Dissertation

BOSTON UNIVERSITY
SARGENT COLLEGE OF HEALTH AND REHABILITATION SCIENCES
Doctoral Project
A PARENT SUPPORT AND ADVOCACY PROGRAM:
ACCESSING CONNECTIONS
by
ANN MARIE KLINE
B.S. Quinnipiac University, 2001

M.S., Boston University, 2006
Submitted in partial fulfillment of the
requirements for the degree of
Doctor of Occupational Therapy
2009
UMI Number: 3357661
Copyright 2009 by
Kline, Ann Marie
All rights reserved.
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ANN MARIE KLINE
2009
Approved by
Academic Mentor. fioA (JtibU PU. ML FAttA

Christine A. Helfrich, PhJ# OTR/L, FAOTA '
Assistant Professor, Dept of Occupational Therapy
Academic Advisor ' '

Karen Jacobs, EdD./DlWL, CPE, FAOTA
Clinical Professor oKQecupational Therapy
Acknowledgements
First and foremost I would like to thank my family, because without their
support and love, I would have not been able to achieve this dream of earning a
terminal degree in my chosen field of practice. My daughter has been my
inspiration for this project and I know she has driven me to be even more of an
advocate for children and their families. I would also like to thank the many
families and children that I have had the pleasure to work with over the last
eight years. All of you have taught me that it is so important to believe in
yourself, your abilities and your family. I want each and every parent I come
into contact with to learn that they too can believe in themselves and that they
know their child best!
I would not be where I am today personally and professionally, without the
support of Boston University and all of the professors at Sargent College. I could
have not asked for a more phenomenal group of colleagues to guide me on my
path to my doctoral degree. Christine Helfrich and Karen Jacobs have been the
most wonderful support system I could ever ask for! Thank you also to all of my
classmates, colleagues, New Hampshire Family Voices and colleagues at
Gateways Community Services, who were part of my circle of advisors.
iv
A PARENT SUPPORT AND ADVOCACY PROGRAM:
ACCESSING CONNECTIONS
(Order No. )
ANN MARIE KLINE
Boston University, Sargent College of Health and Rehabilitation Sciences, 2009
Major Professor: Christine Helfrich, Professor of Occupational Therapy
ABSTRACT
As a professional who works closely with children and their families on a daily
basis, I chose to research and address the need for more accessible and
comprehensive parent education, support and advocacy programs in New
Hampshire. Unfortunately, in the State of New Hampshire, most parents do not
know where to go for help and many families have little understanding of what
services are available for their children with special needs. During the eight
years of my career, I have participated in parent education/support/advocacy
programs and have observed that these programs are most effective and
beneficial for families if they are utilized and understood. Increasing both the
accessibility and comprehensiveness of parent support and advocacy education
is needed.
v
To address the critical gap in service acquisition and delivery for New
Hampshire area families of children with special needs and or suspected needs,
research was examined to note what methods have been used and what methods
are currently in use around the country and the world to support parents in their
journey and this has helped to shape ACCESSING CONNECTIONS.
ACCESSING CONNECTIONS is significant to the pediatric population and
their parents, because it will be an education program that will address the
common needs of parents of children with special needs or suspected needs. It
will be a program that will be able to address diversity, culture and all levels of
literacy. I will work with already existing programs to promote their services
and encourage parents to interact with programs that will support their needs.
ACCESSING CONNECTIONS will also provide parents with a database of
information that they could utilize at any time and it will also afford them the
opportunity to create their own social support network. Many parents of young
children with special needs may also appreciate that the classes will be recorded
and available for future use as well in-case they are unable to attend. This
program promises to be supportive of parents needs while providing them with
the tools to manage the care of their children therefore allowing them to be the
parents they want to be.

vi
Table of Contents
Title Page i
Copyright page ii
Reader Approval Page iii
Acknowledgements iv
Abstract v
Table of Contents vii
List of Tables xiii
Chapter 1: Introduction 1
Chapter 2: Theoretical and Evidenced Base to Support the Proposed Project 3
A: Current Methods of Parent Support 5
1. Peer Support Programs 5
2. Community Support Groups/Support from Medical
Professionals 8
3. Care Coordination Services 11
vii
B: Education Regarding Diagnosis 12
1: Education of Professionals 12
2: Education of Parents 14
C: Tools Currently In Use to Support Parents of Children with Special Needs 17
Chapter Summary 19
Strengths of Current Approaches 19
Limitations of Current Approaches 21
Support for Proposed Program 24
Chapter 3: Proposed Program Description and Information 26
Target Population and Criteria for Identifying Clients for the Program 29
Description of Proposed Program 30
Class 1 32
Class 2 33
Class 3 34
Class 4 35
viii
Class 5 36
Class 6 36
Class 7 37
Research Support for Proposed Program 38
Theoretical Perspectives used to Design the Program 39
Current Programs in Place in the State of New Hampshire 44
Potential Barriers and Challenges 45
Chapter 4: Evaluation Plan 51
Implementation Evaluation 51
Stage 1 52
Stage 2 53
Logic Model 54
Stage 3 55
Stage 4 56
Summative Evaluation 56
ix
Chapter 5: Conclusion 59
Future Objectives 59
Chapter 6: Funding Plan 61
Available Local Resources 63
Needed Resources 65
Budget Year 1 67
Year 2 Operation/Maintenance 69
Needed Resources 69
Budget Year 2 71
Potential Funding Resources 73
Chapter 7: Dissemination Plan 76
Dissemination Goals 78
Long Term Goals 78
Short Term Goals 79
Target Audiences 79
x
Key Messages 79
Sources and Messengers 81
Dissemination Activities, Tools/Techniques, Timing and Responsibilities 81
Budget 84
Evaluation 84
Appendix A: Annotations 86
Appendix B: Informational Survey for Parents 145
Demographic Information to Support Parent Networking 148
Appendix C: Data from National Family Voices Program 149
Appendix D: Class Four Outline 152
Appendix E: Class Four Resources 154
Bibliography 255
Curriculum Vitae 260
XI
List of Tables
Table 1
Table 2
xii
A Parent Support and Advocacy Program: ACCESSING CONNECTIONS
Chapter 1: Introduction
As a professional whom works closely with children and their families on a
daily basis, I chose to research and address the need for more accessible and
comprehensive parent education, support and advocacy programs. I have been
blessed with the opportunity to work with many families, service providers and
organizations and have learned that unfortunately, most parents do not know
where to go for help and many families have little understanding of what
services are available for their children. Services can include organizations that
provide therapy, family support and financial aid as well as advocacy training.
During the eight years of my career, I have participated in parent
education/support/advocacy programs and have observed that these programs
are most effective and beneficial for families if they are utilized and understood.
Increasing both the accessibility and comprehensiveness of parent support and
advocacy education is needed due to the decreased accessibility and
understanding of what is available in the community to families of children ages
birth through five with special healthcare needs.
1
I have found in the state of New Hampshire that organizations, that would
provide this help to families, cannot promote their services very well due to poor
funding and poor accessibility. The poor funding of these programs is a direct
reason why they are not as well known and are underutilized. Services available
in the community and the state need to be maintained and promoted, so that
they can appropriately address families' needs. This project is important
because it will provide a resource to assist parents in finding information and
help in a timely manner, as well as provide assistance to existing organizations in
promoting their programs.
I have created a parent support and advocacy program called ACCESSING
CONNECTIONS. ACCESSING CONNECTIONS is a series of classes that will
address common concerns of families of children with special needs and ensure
that parents are provided with understanding of diagnoses and developmental
concerns, how to cope with diagnosis and disabilities, how to navigate healthcare
and insurance, how to communicate with healthcare and insurance companies,
how to connect with educational, community and state supports and how to
interact with family members and maintain a sense of family. I will utilize expert
presenters on these topics as well as provide question and answer periods after
each class. The information included in the classes is supported by the literature.
2
The appendices of this paper include many resources that will be used in the
programs. It is my hope that parents will find these programs helpful and also a
way to form their own social support networks from meeting with others in the
classes.
Chapter 2: Theoretical and Evidence Base to Support the Proposed Project
Throughout my work as an Occupational Therapist, I have found that there is
a need for increased accessibility and a greater understanding of parent support
and advocacy programs in the State of New Hampshire. Through past
discussions with families of children ages birth through five with special
healthcare needs, I have learned that parents feel that they are at a distinct
disadvantage in their understanding of available supports and programs because
they feel they have "limited access" to this information. They also feel less
supported by medical professionals because there is a perceived lack of
collaboration between disciplines (doctors and therapists) and that doctors and
therapists in general lack awareness of what is currently available in the
community. Regarding family needs, there is a perceived lack of understanding
by the medical community, leading parents to feel unsupported in their quest to
obtain help for their child. If parents do not know where to go for help, or if they
3
ask for help and do not get it, they cannot learn appropriate coping mechanisms
to deal with what is happening to their children.
ACCESSING CONNECTIONS will address a critical gap in service acquisition
and delivery for New Hampshire area families of children with special needs.
The program is meant to increase parents' understanding of state and
community resources for children ages birth through five, with special needs and
to help parents learn to advocate for their child by increasing understanding of
their own family's needs. Participants in the program will be parents that have a
child(ren) with a known diagnosis between the ages of birth through five and/or
parents that have a child(ren) between the ages of birth through 5 with suspected
difficulties or that have concerns regarding their child(ren's) development (Gross
Motor/Fine Motor Delays, Socialization/Behavior difficulties, Feeding difficulties
e t c . ) . I will be partnering with New Hampshire Family Voices, Gateways
Community Services (Area Agency Region-6) and the Parent Information Center
of New Hampshire to further develop this program. I want the project and my
association with N H Family Voices to propel the state into further action to
support parents and programs that are valuable for the wellbeing of our
community.
4
A. Current Methods of Parent Support:
To address the critical gap in service acquisition and delivery for New
Hampshire area families of children with special needs, research was examined
to note what methods have been used and what methods are currently in use
around the country and the world to support parents in their journey. In the
following paragraphs various methods of parent support will be presented such
as peer support programs, community based support programs, support from
medical professionals and care coordination services.
1: Peer Support Programs
Many parents have difficulty meeting the daily needs of their children
effectively and there are many consequences that arise from these difficulties for
both families and service systems. Often parents of children with special needs
may lack the time needed to access resources, research what programs are
available to them, attend programming and purchase needed items. Some
parents may not be aware of their child's needs and/ or do not understand their
child's needs. They may not understand typical development or what their
child's diagnosis is, and how it can affect their child's growth and development.
Parents of children with special healthcare needs also may lack coping
5
skills/mechanisms to deal with difficulties surrounding diagnosis, health and
accessing services due to increased stress. Parent support programs and groups
help to "provide a community of similar others that are trained to listen and be
supportive and they also provide an opportunity for matched parents to
experience equality and mutuality in their relationship" (Ainbinder, Blanchard,
Singer, Sullivan, Powers, Marquis & Santelli, 1998, p. 99). It is also essential that
the support programs provide information and assistance that is practical,
resourceful, congruent with other aspects of care and use a team approach
(McGill, Papachristoforou, & Cooper, 2005).
Research has demonstrated that parent to parent support groups, community
based (early intervention and pediatric medical care) as well as the use of family
caregivers are programs that help reduce the stressors that parents face when
they have a young child with a disability. Some of the stressors such as difficulty
with acceptance of the diagnosis, adjustment to their child's medical or
behavorial needs, adjustments for families needs, financial demands and
limited or no accessible information about their child's disability (Ainbinder, et
al, 1998), can be reduced with the understanding obtained from support groups.
6
Family support interventions appear to be highly endorsed in the literature as
evidenced by Ainbinder, et al., (2002) and Chernoff, Ireys, DeVet, & Kim, (2002)
who report that there were positive effects of their family support interventions.
Chernoff, et al., (2002) studied the effects of providing new families (to the world
of disabilities) with support from experienced parents and child life specialists
that included telephone contact, face to face visits and attendance at special
events and found that this helped to promote adjustment for families and
children that had selective chronic health conditions. Ainbinder, et al., (2002),
noted three components of a parent to parent support relationship that are
essential: 1. the receiving parent of the program feels that his/her situation and
that of the supporting parent are similar, 2. there are comparable situations for
learning skills and gathering information and 3. there is availability and
mutuality of support.
When one parent is a
"mentor to another they have to be eaisly accessible/available, they have
to be percieved by the mentee as being in a similar situation to their own
and parents that need the support want to know and understand that
their feelings or situations are not abnormal" (Ainbinder, et al., 2002).
7
Positive outcomes that are obtained when participating in a parent to parent
program include: parents gaining a feeling of normalcy, parents learning tips on
how to manage day to day operations of their household and achieving
increased feelings of empowerment (Ainbinder, et al., 2002).
2: Community Support Groups/Support from Medical Professionals
Community support groups such as those provided by Early Intervention
programs and assistance from more experienced parents or child life specialists
are especially important for families of very young children (Bailey, Hebbeler,
Scarborough, Spiker, & Mallik, 2004 and Chernoff, et al., 2002). Early
intervention programs are meant to provide theraputic services, support with
finding medical care or other community programs, support for transition to
school programs and helping parents to navigate the world of services from
learning about insurance coverage to obtaining help with getting medical
supplies (Bailey, et al., 2004). An issue that often arises in the state of New
Hampshire is: What happens to those children who do not qualify for Early
Intervention services because they did not demonstrate enough of a delay?
Often these children and their families are given a few pieces of paper explaining
that there are some programs to assist them. The programs featured on these
8
pieces of paper are not always discussed at great length and parents often feel
lost and are afraid that they may pester their local agency if they call them
repeatedly. In the end, calls are not made and parents become frusterated. Once
this happens, the probability that parents will access further information is
unlikely. This is why ACCESSING CONNECTIONS was created, to assist
families in learning about what is available in their communities regardless of
whether or not their children qualify for Early Intervetion services.
For those families with children that meet criteria to be enrolled in Early
Intervention in this state, they receive much more information on local and state
supports. Each family is always assigned a case manager or primary therapist
who is a personal contact and this person helps to put them in contact with other
families who might be in similar situations. Sometimes early intervention
programs can even put parents in contact with child life specialists. Chernoff, et
al., (2002) note that child life specialists and more experienced parents that
provide telephone contact, face to face visits and attendance at special events are
helpful for new families of children with special needs to cope more easily with
their new found challenges and that children also adjust to their disability or
chronic illness more easily.
9
Once a child is enrolled in Early Intervention services in the State of New
Hampshire, the child's pediatrician and any other service providers are made
aware so that the treating team and the early intervention team can work as a
cohesive unit. The involvement of Pediatricians and Occupational Therapists as
part of parent support teams or as advocates for children that needed certain
services has also been supported (Hinojosa, Sproat, Mankhetwit, & Anderson
2002; Perrin, Lewkowicz & Young, 2000; Care Coordination: Integrating Health
and Related Systems of Care for Children with Special Health Care Needs 1999
and The Pediatrician's Role in Family Support Programs 2001). Many families
have also expressed the need to have doctors and other health professionals
realize what it is like for a family to receive a diagnosis for their child and how
the initial interaction with a professional can leave a lasting effect on a parent's
ability to feel that they can successfully communciate with medical professionals
(Graungaard & Skov, 2006). Webb (2005), shares in her study, the importance of
parents feeling like they can provide a more normalized life for their child with
special needs and other sibilings. This can be achieved through support groups,
pediatricians having an understanding of the families' needs and the
community being supportive and holding programs for children and their
families.
10
3. Care Coordination Services
The use of Care Coordination (1999) services are also encouraged by the
American Academy of Pediatrics to address the overwhelming need for parents
to have one or two contact people out of a whole team to work mainly with to
coordinate appointments, paperwork and funding for medically related
programs. The services of care coordination should provide full access to needed
health, education and social services for families of children with special needs.
The use of medical and theraputic professionals as a part of care coordination
teams for families of children with special needs has also been found to be an
effective method in trying to provide parent support and advocacy education.
Although this has been found to be effective, professionals feel that they need
further education on how to support families in their quest for knowledge and
services (Hinojosa, et al., 2002; Perrin, et al., 2000; AAP, 1999 and AAP, 2001). If
professionals do not have an understanding regarding how to support families,
this aspect is often missing from the care plan and parents can feel overwhelmed
with having to find out information on their own. Families should feel that they
are able to become the leaders in care coordination efforts for their child, with
support from medical professionals. In addition, research should be done to
11
develop new approaches to coordinate care and interdisciplinary training should
take place to educate medical professionals in this aspect of care.
B. Education Regarding Diagnosis
Parents need to be aware of health information regarding their child and in
addition professionals need to be educated on how to help parents gain access to
information and sometimes how to properly support them through their journey
when they have a child with special needs. Research highlighted the need for
both education for families and education for professionals in the realm of parent
support and advocacy.
1: Education of Professionals
In a study by Perrin, et al. (2000), it was found that, pediatricians should be
"more aware of the parents need for increased diagnoses-specific information.
Pediatricians also need to be aware of community support programs and the
need to arrange joint planning meetings with families of children with special
healthcare concerns. Doctors should not underestimate parents needs for
assistance and they need to understand financial barriers families might face in
care" (Perrin, et al., 2000, p. 284). Health care practicioners, especially
pediatricians, need to be aware of the increaseing numbers of families seeking
12
services for their children (AAP, 1999 & 2001). Doctors need to be prepared to
have open and ongoing relationships with parents to facilitate discussions,
monitor and guide development and address concerns (AAP, 2001). There were
studies that indicated pediatricians were unaware of how often parents were
interested in being involved in groups, as well as networking and counseling and
that the pediatricians were less likely to identify a need for care coordination.
This was something that was indeed shocking and has helped to shape
ACCESSING CONNECTIONS into a program that will incorporate pediatricians
and family practice doctors in the teaching of concepts to families to help
encourage a positive relationship to be formed between parents and medical
professionals. Professionals are also encouraged to engage in continuing medical
education programs, to engage in shared decision making with families, to
become involved in community programs addressing parent support and
advocacy and to provide technical assistance to these groups.
Occupational Therapists always appear to be on the front line of educating
families. We often have more time to spend with families than other medical
professionals and we have a rich history in our profession of understanding
psychosocial aspects of care. Even though we have training in psychosocial
aspects of care and mental health, information was found throughout the
13
research indicating that Occupational Therapists felt that it was very difficult
working with parents that faced multiple stressors. These multiple stressors
include unstable family units, poor accessibility of parents by their children,
increased parental stress, lack of financial resources, poor parenting skills and
limited social interactions (Hinojosa, et al., 2002). These stressors impacted the
effect of occupational therapy intervention for the children that were receiving
services and impacted the role of therapists in family and parent education.
These very stressors though, are what Occupational Therapists need to be able to
address in treatment and another reason there needs to be a more comprehensive
parent support and advocacy program available. Throughout the research there
were specific recommendations for educating medical/theraputic professionals
including developing collaborative partnerships with families and developing
curriculum around learning to address family stress, limited social interactions
and financial constraints (Hinojosa, et al., 2002).
2. Education of Parents
Parents continue to be frusterated with health systems, they express they felt
like they are being given the run around by service providers and are uncertian
about diagnoses and how to advocate for their child (Rodger and Mandich,
14
2005). Families continue to want help in the form of coordinated care, increased
communication with primary care doctors and a family support system (Perrin,
Lewkowicz, & Young, 2000). Education programs offered to parents should
encompass information on how parents can make others aware of their needs.
Studies have been conducted to understand parents needs when their child
has a specific diagnosis. Some of the diagnoses described in the literature
include severe physical and mental disabilities such as Infantile spasms,
Lissencephaly, Lumbar Meningo-myelocele, Wolf-Hirschorn syndrome and
Down's Syndrome as mentioned by Graungaard & Skov (2006). Other authors
researched families of children with disabilities resulting from Shaken Baby
Syndrome and Seizure Disorders of unknown origin (Olson & Esdaile, 2000),
Autistic characteristics, Chromosomal abnormality, severe Cerebral Palsy, life
threatening abnormalities, faulty shunt issues and learning/behavioral
disabilities (Pain, 1999), Cerebral Palsy (Raina, et al., 2005), Developmental
Coordination Disorder (Rodger & Mandich, 2005) and Duchenne Muscular
Dystrophy (Webb, 2005). The parents identified needs related to accessing
services as well as information regarding their child's disability and receiving
recognition that they understand their child's needs (Pain, 1999 and Rodger &
Mandich, 2005).
15
According to Graungaard and Skov, (2006), many parents had difficulty
coping with intial diagnoses of their children and dealing with the diagnostic
process that is often highly demanding of time and financial resources. Parents in
the studies mentioned above felt the overwhelming need to be supported by
medical and theraputic professionals and to not be told they are imagining
things are going wrong with their children. Being taught to use coping skills in
dealing with everyday life and care for their children was a primary method of
support. Coping was defined as " the constantly changing cognitive and
behavioral efforts to manage specific external and or internal demands that are
appraised as taxing or exceeding the resources of that person" (Graungaard &
Skov, 2006). Some positive coping strategies included collecting information on
diagnoses, learning new skills (such as how to interact with health professionals
or learning new theraputic techniques to use at home), investigating alternative
medicine and training possibilites as well as seeking second opinons. Using
these coping strategies made parents feel more in control of their situation
allowing them to change their feelings of hopelessness (Graungaard & Skov,
2006). If parents cannot cope well with situations they are in, or if they have
mental health difficulties it impacts satisfaction with medical teams and services
which can lead to feelings of inadequacy on the part of the parents. This can
16
hinder their ability to communicate effectively with medical or therapeutic
professionals, therefore possibly creating a rift between them and medical
professionals, further increasing the chance that their needs will not be met.
A study done by Ireys et al., (1996), provided tentative evidence that
percieved availability of support and enchanced support decreases mental health
symptoms while Mazurek et al., (1998) reported that mothers had a stronger
belief in themselves regarding their ability to understand and predict their
child's responses to hospitalization after they participated in parent
support/education programming. Mothers in the Mazurek (1998), study
reflected on the support they received to help them learn to decrease their stress
levels and how to decrease feelings of being overwhelmed. This information
supports the need for a program such as ACCESSING CONNECTIONS to
decrease the stress that parents face when having a child with special needs.
C. Tools currently in use to support parents of children with special needs
around the United States and World:
Parents that seek support in the physical sense from groups of people or
medical professionals, could also benefit from utilizing tools to help support
their children and family. The following studies from Blackburn & Read, (2005)
17
and Stewart, Law, Burke-Gaffney, Missiuna, Rosenbaum, King, Moning & King,
(2006) promote the use of tools to provide support and advocacy strategies to
help ensure that parents can independently obtain information and present it to
their family members or medical professionals. The tools helped to increase
effective communication therefore decreasing stress. Stewart, et al., (2006),
demonstrated in their study how information about children with special needs
is provided to and used by medical professionals and how this is a major concern
to families. The authors created a tool called the Parent Information KIT. The kit
is an "information management system and child advocacy tool designed to
assist parents in getting, giving and organizing information regarding their child,
in an effective way" (Stewart, et al., 2006). It includes strategies, tips and
resources to teach parents how to organize their child's health and
developmental information in an efficient way, therefore promoting their ability
to be effective communicators of their child's needs. Through their research,
Blackburn & Read, (2005) found that for some parents the internet is a viable and
flexible medium for accessing useful information and services. For others that
don't have access to the internet, information needs to be available and written in
a way that others can understand it.
18
Summary
Strengths of current approaches:
The most important components of the methods that have been found in the
studies analyzed for this paper include encouraging parents to be team leaders
in the care of their child and providing parents with means to communicate
openly about their child with medical professionals and their families. Another
important component of these methods that was found, was that the community
should take part in supporting parents of children with special needs through
the use of parent support groups, family activities and encouraging working
with medical professionals by making the professionals and programs more
accessible.
Parent to parent programs are known to provide support like no other group,
because the assistance comes from peers who may be in the same situations as
parents that are seeking services. The studies found, support the need for these
programs and suggest that they could be effective for children with any chronic
illness and implemented in a variety of settings because they are focused mainly
on parents needs (Ainbinder, et al., 1998 and Chernoff, et al., 2002). Ainbinder, et
al. (1998), also state, that in order to make these parent to parent support
19
programs even more beneficial there needs to be a quality control tool
implemented to make sure that what is being provided to parents is monitored
and thorough. Other important components of methods mentioned in articles to
substantiate the effectiveness of parent support and advocacy programs are: that
if there is increased education for medical and therapy practicioners regarding
how to support parents of children with special needs, there will be more
positive outcomes in relationships between parents and medical professionals
(Hinojosa, et al., 2002). Products and services mentioned in the article for this
project such as the parent information KIT and the use of the internet also have
proven effective components to support parents and help them advocate for
services. The parent information KIT (Stewart, et al., 2006) was effective because
it was a single location (binder) that parents went to, to utilize and share
information about their child with medical professionals when in appointments.
It was something that was solely created by parents that assisted them, in
learning more about their child and therefore increased the parents ability to
better advocate for what they felt their child needed (Stewart, et al., 2006). Care
coordination was another method that had components that were clearly
effective in supporting parents and their ability to advocate for their children.
Some effective strategies in care coordination services were as follows: parents
20
were encouraged to be team leaders in the care of their child, which served to
increase their knowledge about their child and reinforced their ability to
advocate and it also encouraged open communication with medical professionals
therefore "leveling the playing field" (AAP, 1999).
All of the research both from the United States and around the world found
for this project, demonstrate support for the increased need for parent education
and advocacy programs. However, as will be discussed in the following section
of this paper, the current parent programs based on the research fall short in
their ability to provide information that all parents feel that they can benefit
from.
Limitations of Current Approaches:
It has been noted throughout the research that.a lack of evidenced based
practices, unsophisticated approaches (just verbal advice and nothing written)
and equality of access to help, all can impact parent perceptions of helpfulness
(McGill, et al., 2005). The three primary shortcoming of methods noted in the
research for this project are, that practices involving families and children need
to be evidenced based, equally accessible and easily understood, by parents
seeking them (McGill, et al., 2006). If these components are met, parents are more
21
likely to feel supported and better able to advocate for their children's needs.
Also noted is, if practices are more evidence based, medical professionals will
tend to favor those programs over ones that are not as well-proven to be
effective.
Parent to parent support groups, community based (early intervention and
pediatric medical care) as well as the use of family caregivers, need further
evidenced based research to be undertaken especially within the same state, the
same geographical area of the country and in all areas of the United States.
Evidenced based research should also be undertaken to compare programs in the
United States and other foreign countries. Further research will clarify which
programs work in various parts of each state or geographical area such as the
northeast and how programs differ between countries and why they work. In the
future, it would be ideal if each state and country that runs programs for
children with special healthcare needs could communicate and work with one
another to have similar support systems in place. With this further research,
hopefully there could be a consensus to create programs that are very similar, so
that when and if families move, they could have access to comparable programs
that they are moving away from.
22
It may also be beneficial for manualization of programs to occur, because it
would ensure that the level of detail that permits treatment to be carried out in
the same way across participants, therapists, and clinical sites (in a multi-center
study), can be replicated in future research, and then the findings could be
generalized to clinical use. The goal for this would be to ensure that programs in
place can be more effective when utilized and that if a parent moved within a
state or state to state or country to country they could expect a similar program
(Hart, n.d.). If there were more programs that were manualized there may have
been different outcomes noted in the research or there may have been similarities
that could have been found in different programs around the country. The
research for truly effective methods of parent support and advocacy specifically
outside of the support of early intervention and pediatricians was difficult to find
in the age ranges that were targeted for this project.
It appears that in studies that were performed outside of the United States, the
focus was more on products to support parents rather than groups that provided
support. I think that there are certain barriers in all countries to properly
support parent to parent programs due to cultural differences, different belief
systems, different class systems and religions. Many families have different
views on who should care for children with disabilities and who they will accept
23
assistance from. It is interesting to note that the use of products such as the
Parent Information KIT (Stewart, et al., 2006) and the use of the internet
(Blackburn, et al. 2005) were a popular method in foreign countries but were not
fully researched or the research was not as easily accessed in the United States.
There are barriers (stated mainly in studies in countries outside of the United
States), to the use of the internet including financial ability to purchase a
computer, decreased time to be able to use the internet due to needing to travel
to a place to get service, difficulty with transportation to and from places with
internet access and difficulty navigating sites for information.
Support for Proposed Program:
Support for a program such as ACCESSING CONNECTIONS is positive, as
evidenced by the literature and theories found for this research. There is strong
positive evidence that providing early support, that is easily identifiable and
accessible increases the likelihood that families are able to engage and/or re-
engage with the community and its services to benefit their child (Carpenter,
2007) and that parents can become better equipped to handle stress and anxiety
in order to reach out for services that help them adjust to new challenges of
raising a child with a special need (Pain, 1999). Engagement in social support
networks, whether they are due to a planned group meeting (Ainbinder, et al.,
24
1998; Ireys et al., 1996 & Rahi, Manaras, Tuomainen, and Hundt, 2004) or a
naturally occurring support system (Cohn, 2000), are also effective for increasing
emotional support that parents feel, which allows the parent to learn a great deal
to help support their child and advocate for them.
It is important to note that legally, assistance needs to be provided to families
of children ages birth through five who have been found to require the support
of early intervention programs. Part C of IDEA was formed to protect the rights
of children aged birth to five year old and their families. According to the law,
"Part C of IDEA was created to enhance the development of infants and
toddlers with special needs, to reduce educational costs by minimizing the
need for special education, to minimize institutionalization and maximize
independent living and enhance the capacities of families to meet their
child's needs" (Wrightslaw, 2008).
By law the capacities of families to meet their child's needs has to be addressed
and further supports the need for a comprehensive program like this to be
available and supported by other professionals.
The overwhelming positive evidence for programs and products mentioned is
encouraging because I plan toimplement the use of the tool KIT, become
involved in parent to parent support programs, and will bridge the gap with
25
medical professionals to increase coordinated care for children that I serve. It is
important that Occupational Therapists learn how to support families and
advocate for them (Hinojosa, et al., 2002).
Chapter 3: Proposed Program Description and Information
ACCESSING CONNECTIONS was designed to be a series of parent support
and advocacy classes that would empower parents of children with special
healthcare needs. The program will also provide parents with a resource guide
of organizations that are available to lend support to families. The series of
classes will be given in partnership with New Hampshire Family Voices. This
partnership between New Hampshire Family Voices (NHFV) and myself was
established in July of 2008 and is meant to also provide this organization with
further referrals for their services. New Hampshire Family Voices (NHFV) is an
organization that is run by parents that have children with special health care
needs, multiple disabilities and mental health conditions. The program has many
components, but the component that I find to be particularly helpful is a free
lending library of over 2,000 titles of books, videos, and audio tapes with a
specialty in children's books on specific conditions and disabilities, sibling
26
relationships, behavior and social issues. Parents are able to access these items
via the internet or by mail.
NHFV is both grant and state funded and is a part of Family Voices which is a
national grassroots organization. The national organization helps to provide
information and education about ways to ensure and improve family-centered
health care for children and youth with disabilities and chronic conditions. The
Family Voices website contains information on their programs and how they
serve the national population. There is a document on the website that presents
a Summary of Data Reported to Family Voices by Family to Family (F2F) Health
Information Centers (HICs) and Network Members July, 2003 through June, 2004
for 31 states across the country. The summary of data show statistics related to
how many requests for information and assistance there were from both families
and professionals and what types of information were sought by families and
professionals. This document demonstrates just how important a program like
Family Voices is in the 32 states that it is currently servicing as of 2008 and
proves the need for New Hampshire's Family Voices program to rise above and
beyond these statistics so that we can ensure the success of our own state's
families (information from this document can be found in appendix C).
27
The development of ACCESSING CONNECTIONS, will involve two steps to
address a critical gap in service acquisition and delivery for New Hampshire
area families of children with special needs.
These steps include:
Distribution of a survey (to be done in June of 2009) to understand/identify
the needs and concerns of local parents of children with special healthcare needs.
This survey will assist in my understanding of what specific information parents
are searching for and to find those parents that may be interested in attending
programming. The families who will be invited to complete the survey will be
identified through early intervention programs, pediatrician's offices, therapy
clinics and current families that access N H Family Voices programming. (Please
refer to appendix Bfor the survey)
The development of a series of parent education classes with built in time
during the classes to help parents create connections to social networks and
resources in the state. Time will also be spent on helping parents increase
advocacy skills. The proposed program will help families learn about
community/state programs that provide support and advocacy training and will
strive to empower families to become advocates for their children. Parent
education classes will also strive to be culturally competent and relevant to
28
participants. Based on information obtained via surveys and phone calls,
participants may be grouped by similar culture, same age children, same age
parents, socioeconomic status etc....
The targeted population and criteria for identifying appropriate clients for my
proposed program are as follows:
• Parents that have a child(ren) ages birth through five with a
known diagnosis (such as Cerebral Palsy, Developmental
Delays, Mental Retardation, Seizure Disorder, Genetic
Disorders, Autism Spectrum Disorders etc..) or children with
suspected difficulties or concerns regarding development (Gross
Motor/Fine Motor Delays, Socialization/Behavior difficulties,
Feeding difficulties etc...)
• Parents that are referred by their child's pediatrician
• Parents that want information from support organizations
and/or advocacy organizations
• Parents that are interested in meeting other parents that have
similar needs
• Parents living in the state of New Hampshire
• Parents whose children are involved in early intervention
29
• Parents of children not involved in early intervention but that
have concerns about their child.
Parents do not need to meet all criteria to become involved in the program.
Description of Proposed Program:
The proposed program was created with the assistance of New Hampshire
Family Voices. The classes were developed from the following website
http://www.nhfv.org/Publications.html and the structure of each class was
created based on feedback received from parents throughout my career, from
documents on the website noted above and from feedback that NHFV receives
on a daily basis.
Documents used (via the above website) are as follows:
• Maneuvering Through The Maze 2008 Edition - N H resource guide of
agencies, organizations and services.
• Plugged In - a 67 page N H resource guide for young people with special
health care needs or disabilities.
• Quality Health Care for Children with Special Health Care Needs -
Outlines the principles that provide quality health care for children with
special health care needs.
• Tips On Handling Medical Appointments - For families who have
30
children with special medical needs.
• Medical Prescription Tips - Practical tips and questions to ask once a
decision is made to prescribe medications.
• Meeting Your Child's Health Care and Related Needs at School
This brochure is to help families plan for their children's healthcare needs
at school and to learn what role public schools have in addressing health-
related needs of children with disabilities, chronic illnesses or other
conditions.
• Using Children's Literature - Learning to use literature to assist in the
child's understanding of a chronic health condition or disability.
• Planning for Medical Emergencies
The purpose of this brochure is to help families think about how to plan
for health emergencies or accidents that would affect their children with
disabilities, chronic illnesses or other special needs.
• Does Your Child with Special Health Care Needs have a Medical
Home? - Learn about this new way of thinking around primary care.
• Parent Participation - When working on a program or project, parent
participation will bring a new depth and enrichment to the process. This
brochure outlines some ways to reach out to parents and the supports
31
they may need to feel valued as full participants.
• Speaking Up For Yourself - Self advocacy tips for youths with special
health care needs.
The classes that will be provided will address the following topics:
Class One: Understanding of Diagnoses and Developmental concerns: 60-90
minute talk with 30-60 minutes of socialization after class with refreshments
I will partner with a Pediatrician, Pediatric Nurse Practitioner or
Developmental Specialist for this class so that answers can be given to
parents who may have more medically based questions. I plan to utilize
Dr. Duxbury who is in my circle of advisors if her schedule allows, if not I
will meet with other pediatricians who may be interested in support and
advocacy programs.
Based on feedback from the informational surveys that are
returned, I will:
• Provide information on diagnoses that parents need
information on such as Cerebral Palsy, Mental Retardation,
Genetic/Metabolic disorders etc...
• I will also share information on child development with
32
parents who suspect their child has a delay.
• I will hand out developmental checklists so that parents can
track their own child's development.
Class Two: How to cope with diagnosis and disabilities: (60-90 minute talk
with 30 to 60 minutes of socialization after class with refreshments)
I plan to co-teach this class with either a social worker or speech
and language pathologist (the SLP is someone who has provided
many different kinds of support groups in the past and is very well
versed in communicating information to parents in a calm and
gentle manner) or a parent from New Hampshire Family Voices.
We will help parents to explore the use of:
• live parent support groups
• online support groups
• family support groups
• play based therapy for parents and children
• counseling
• community support programs
33
Class Three: How to navigate healthcare and insurance: (60-120 minute talk
with 30-60 minutes of socialization after class with refreshments) (this can be
broken up into two classes if needed)
I will co-teach this class with a professional who deals with insurance in
outpatient practices. New Hampshire Family Voices has offered assistance
to help me obtain the help of this type of professional. I will also provide
handouts of all information covered.
I will research insurance plans prior to this class and talk about the
following topics:
• what an insurance rider usually looks like
• what insurance terms mean
• how to talk to insurance companies about services
• how to ask if certain programs/DME are covered by
insurances
• talk about whether or not they may need referrals for
services
• talk about flexible spending plans from their places of work
if they are available
• talk about Medicaid programs, etc....
34
Class Four: How to communicate with healthcare personnel and insurance
companies: (60-120 minute talk with 30-60 minutes of socialization after class
with refreshments) (outline of handouts for this class will be provided in
appendix E)
I will partner with New Hampshire Family Voices to provide the
following information:
• How to create a personal health notebook/binder of their
child's health and developmental information that allows
easy access to information when it is needed to communicate
with professionals
• How to make concerns known to doctors and therapists,
how to ask questions
• We will provide ideas such as writing down questions prior
to appointments
• How to use a calendar to chart concerns
• How to deal with wait times for appointments (if this is a
concern)
35
• How to obtain referrals for professionals you would like to
have on your child's medical team
Class Five: Navigating the Resources: (60-120 minute talk with 30-60 minutes
of socialization after class with refreshments)
I will partner with N H Family Voices to provide the following
information:
• We can talk about workshops that are provided that help
with understanding what Family Centered Care and
Medical Home consist of and how to collaborate with health
care professionals
• We can also talk about how to negotiate the resources
available within New Hampshire Department of Health and
Human Services, tertiary care centers and community
hospital settings.
Class Six: How to connect with community and state supports: (60-120 minute
talk with 30-60 minutes of socialization after class with refreshments)
I will co teach this class with N H Family Voices
36
• I will create a running computerized list of organizations that
would be good sources of information and services
throughout the state with the organizations permission and
provide this list to families and place it online
• We will talk about how to interact with these agencies
• Talk about how to obtain paperwork for services if needed
• How to communicate with schools and daycares, etc....
Class Seven: How to interact with family members and maintain a sense of
family: (60-120 minute talk with 30-60 minutes of socialization after class with
refreshments)
I plan to co-teach this class with a social worker or family support
personnel and we will provide information on how to:
• Effectively manage family tasks/finances
• How to make sure that all siblings needs are met if there are
siblings in the family
• How to maintain social life
• Talk about respite programs
• How to tell your family about your child's needs
• How to communicate effectively with your partner and
37
family members
• How to involve family in your child's care
These classes are meant to be taught in person, but will also be recorded for
future use. Information will also be available for families via the internet and in
local pediatrician's offices. Respite care will also be provided to increase the
number of parents that are able to participate in face to face classes.
Research Support for the Proposed Program:
When deciding how to meet the needs of parents of children with special
needs ages birth through five, a search of the literature was undertaken, to find
out what programs have been beneficial in the past and what ones have not.
After research was completed, the program was developed. This program
draws upon existing literature noted previously, is relevant to policies and
systems that are in place in the state of New Hampshire and is feasible, relevant
and scientifically sound.
Collectively, the studies that are presented throughout this project highlight
the need for parents to feel supported and educated about what their child's
needs are. In addition to finding theories that support ACCESSING
CONNECTIONS, research was completed on parental needs and stress, medical
systems and legislative impacts. It has been found that parents' stress and needs
38
can be addressed rather appropriately through support groups, pediatricians
having an understanding of the families' needs and the community being
supportive and holding programs for children and their families.
Theoretical Perspectives used to Design the Program:
In designing a program such as ACCESSING CONNECTIONS, that can
address these unmet needs of families, several theories provide useful guidance.
First, Bandura's Social Cognitive Theory emphasizes the "importance of
enhancing a person's behavioral capability (knowledge and skills) and self
confidence (self-efficacy) to engage in particular behaviors" (Baranowski, Perry,
& Parcel, 2002, p.171-173.) The major tenets of this theory that directly apply to
this project are observational learning, self efficacy and emotional coping
responses. When a person is able to watch the actions of another person and the
reinforcements that the person receives for performing actions or completing
actions, observational learning occurs. Self efficacy relates to how confident the
person feels when performing an activity and the confidence needed to
overcome any barriers or issues to performing that activity. When a person can
use different strategies to help them deal with situations that may not be
favorable they are said to use emotional coping responses. Having the ability to
use emotional coping responses helps with stress management when learning to
39
deal with difficult situations (Baranowski, et al., 2002).
The tenants of this theory underscore the basic need for ACCESSING
CONNECTIONS: To prepare parents to be effective in seeking out resources
and/or advocating for their child they need support and the ability to make
connections with others. Many parents learn how to seek out services and
programs, feel more confident in their abilities and can better cope with stress
and their child's needs, when they have someone to work with that is in a similar
situation.
Second, Heaney and Israel's theoretical perspective on Social Networks and
Social Support was chosen to help explain how and why ACCESSING
CONNECTIONS was created. Heaney and Israel define social networks as "the
web of social relationships that surround individuals" and social support as "aid
and assistance exchanged through social relationships and interpersonal
transactions" (Heaney & Israel, 2002, p.187.) Heaney and Israel, (2002) emphasize
the importance of understanding the characteristics of participants in social
networks, as they (the participants) influence the quality and quantity of social
support that is exchanged within a network. The typology presented in this
theoretical perspective is that of "enhancing social network linkages, developing
new linkages and training of supportive persons" (Heaney & Israel, 2002, p.197.)
40
This theoretical perspective and typology can help to explain why it is
important for ACCESSING CONNECTIONS to provide parents with a built in
social network and social support relationships. The typology promotes
education on how to provide parents with skills to help them learn to provide
social support to another person, to create mentor/mentee relationships between
parents and to help them to identify those who could help them in their own
community. ACCESSING CONNECTIONS plans to promote local community
groups to show parents, that there are people to contact in the community to
help with any needs they may have.
Third, the Transactional Model of Stress and Coping was used to develop
ACCESSING CONNECTIONS, because it helps to evaluate the processes of
coping with stressful events (person-environment transactions). These
transactions are the impact of an external stressor or demand on a person that is
mediated by the person's understanding of the stressor and the resources he or
she needs to combat that stress (Wenzel, Glanz and Lerman, 2002). When faced
with a stressor, in this model, "a person evaluates the potential threat (primary
appraisal), their ability to alter the situation and manage negative reactions
(secondary appraisal) and use coping efforts that are aimed at problem
management and emotional regulation which help to provide outcomes of the
41
coping process"(Wenzel, et al., 2002, p. 212.) This model helps one understand
how stress impacts a parent's ability to change his or her thought processes and
how stress impacts areas of daily functioning. ACCESSING CONNECTIONS
hopes to provide parents the ability to use these appraisal techniques to cope
with stress by providing parents with information and ways to address any
issues they may face. If parents can move through the stages in this model the
end result would be that they are more optimistic about their situation and they
become more interested in seeking out information to help their families rather
than being bombarded by stress.
Finally, Interdependence Theory (Kelley and Tibault, 1978 & Rusblat and
Van Lange, 1996) was chosen to support the ACCESSING CONNECTIONS
program because it is a dyad level social psychological theory that explains how
influence and communication affect behavior by taking into account the
outcomes experienced by interacting partners (Lewis, DeVellis & Sleath, 2002).
Since the program is based on interactions between all different types of people,
it would be important to understand the three key tenets of this theory:
Relationship Interdependence, Interdependence and Correspondence of
Outcomes. This theory explores structural characteristics of a relationship that
bring people closer together or drive them apart. How people influence each
42
other's experiences or the effects an individual exerts on another person's
motives, preferences, behavior and outcomes and also how interacting partners
should be included in interventions that usually target individuals is explored.
The theory also examines the degree to which interacting partners agree about
the shared or joint outcomes in a relationship. Better outcomes occur when
partners are fully cooperative with each other in determining the desired
behavior. The level of agreement between partners in a relationship can help
focus attention on important values, motivations, and barriers to behavioral
change.
With the use of this theory, health educators can focus on skill building,
increasing knowledge and maintenance activities to retain information and skills
of participants in programs (Lewis, DeVellis & Sleath, 2002). During the
programming that will be provided through ACCESSING CONNECTIONS, it is
a goal that parents can form their own social support network, during facilitated
times at the end of each presentation. It is also a goal, that through guidance
from the interdisciplinary presenters, that parents will be assisted in focusing on
how to be a resource for one another, how to help one another increase their
knowledge and help them set goals for their newly formed partnership with one
another.
43
Current Programs in place in the State of New Hampshire:
Research was also undertaken to learn about programs that are already available
in the state of New Hampshire.
The following is not an exhaustive list of what is available at this time:
Ten Area Agencies Developmental Clinics
Parent Information Center Early Intervention Programs
State Medicaid Office Easter Seals Programming
New Hampshire Department Beaureau of Special Medical
of Health and Human Services Services
Family support groups Hospitals
New Hampshire Family Voices Therapy Clinics
All of these programs appear to have a vested interest in supporting parents
in their quest for further information regarding their child and community/state
programs. The programs mentioned above usually provide handouts of various
programs to parents and always have staff members available that are able to
talk to parents about what may be available in the state of New Hampshire.
44
Some of the issues found with the utilization of these programs above are
funding, where in the state the programs are located, waiting lists for services,
changes at the state level for eligibility of programs and parents lack of
understanding that these types of programs are available.
ACCESSING CONNECTIONS is different from the individual programs
stated above as it is meant to be a comprehensive program that provides parents
with information regarding what services are available (some of which are stated
above) to their child and their family and helps to encourage families to become
advocates for their needs. The New Hampshire Family Voices Program and Area
Agency Region 6 (Gateways Community Services) have a vested interest in
ACCESSING CONNECTIONS as they have stated that they will provide support
in the form of space to hold programs, will help to provide professionals to speak
to class members, will allow me to use information they have put together
previously and will also help with monetary funding.
Potential Barriers and Challenges
I have learned about potential barriers and challenges to the implementation
of my proposed program from both personal and professional knowledge. The
following table, Table 1 represents potential barriers or challenges and what I
propose to do to help them not become insurmountable barriers.
45
Table 1
Barriers and Challenges to Proposed Program
Challenges that were present How they are currently being addressed? What is the plan to prevent challenges from
becoming more difficult?
Will organizations be willing to I have found that currently there are at My plan is to continue to approach the
share information regarding least 3 organizations that are willing to organizations well in advance of needing
their programs? share information with me regarding their services and to make sure that regular
their programs and what has worked for contact is kept with them so that any potential
*».
ON
them. problems can be addressed.
Will the organizations have time I was able to obtain commitments from
to work with me? the above mentioned groups (such as
time, space to hold classes and
information to aid in presentations.)

Will a parent organization be At the present time, three organizations At anytime these partnerships could be in
secured to help coordinate the will help coordinate the program. One jeopardy especially if the organizations falter,
program within the geographical organization is in an adjacent town and change hands or no longer want to
area that the program will be two are in the capital of the state. New participate. Active communication with these
available? Hampshire Family Voices will be my organizations is important.
main parent organization.
VI Will there be parents who will There will always be parents that want Informational surveys will be mailed out and
want the education provided by the education being provided. The issue current programs that provide services to
the program? What strategies that always arises with this type of children age's birth through five with special
would be best to use to obtain programming is obtaining the needs will be contacted to secure participants
information from families to commitment from the families or reaching in the program.
participate in this program? out to families.

Where would it be best to hold This will always be a challenge for the The classes will be videotaped and the
the group classes? program and the program may need to be information will be placed on the internet so
held in many different locations in order more families can be reached.
for it to be successful.
Should classes be held at a These will be explored prior to the start of A survey will be distributed to find out best
community center, school, the first set of classes to determine what places to hold the program as well as
GO medical office, hospital, or the best place is to hold classes; surveys maintaining communication with community
parent's homes? can be developed to help gain based agencies and asking for their opinions
information on where to hold classes.
Should there be paper handouts I believe that all of these should be made The program needs to have a budget in place
of talks? Should classes be as options when providing this type of to be able to present these types of options, so
videotaped? Should there be a program in order to meet everyone's this will be explored further.
website with information on it? needs.

Will these classes increase stress Classes could possibly put increased This will be an area more adequately explored
to families? stress on families in the form of trying to after the first series of classes given and
get to classes, trying to absorb all the feedback questionnaires are returned.
information presented, creating social
networks and listening to others could
prove to be stressful.
Will expert presenters be willing Social workers, pediatricians, insurance New Hampshire Family Voices plans on
to present information for the workers, parents, Occupational providing assistance with this specific
topics that have been chosen? Therapists, Physical Therapists and concern. NHFV plans to provide the program
What disciplines would be best Speech Pathologists are some disciplines with contact information for providers that
to present information? that would be best to present this they interact with on a daily basis to support
information. each of the classes

Should childcare be available? Yes, childcare should be available so that Respite care can possibly be provided with
more parents can participate in the the help of local day care programs and or
program (this is currently an issue in students enrolled in college courses related to
programs currently available)... early childhood education, special education
or different therapy fields as part of their field
placements.
Ol
Funding for project? New Hampshire Family Voices will assist NH Family Voices has already agreed to provide
o
, . . . c J- J i. copies of pertinent information that has been
Should grants be written? r r
in obtaining funding and cost
created to build parents packets of information,
What will costs be? analysis/budget should be formed
Personal funding will not be used. Exploration of

Is personal money utilized?
fundraising would important
All of the potential barriers and challenges described could affect the outcome of
my project, but many things will not be known until the project is closer to
completion. This also may not be an exhaustive list of potential barriers or
challenges.
Chapter 4: Evaluation Plan
Both Implementation evaluations and Summative evaluation will be
conducted for ACCESSING CONNECTIONS. According to Love (2004),
implementation evaluation assists with, " identifying and meeting the needs of
consumers, delivering high quality programs, continually improving services,
applying evidenced based practice, demonstrating accountability for achieving
the outcomes and using performance measures to bridge the gap between
planning and program implementation." For ACCESSING CONNECTIONS,
Implementation Evaluation will assist in documenting program activities such as
classes, parent support groups formed and relationships parents have formed
with other programs due to the education provided. It will also assist in
providing evidence that the program is being delivered as described and that
any changes are documented. This documentation can be presented to potential
stakeholders for future development of the program. There are four stages to
51
Implementation Evaluation (Love, 2004) and questions to help develop an
Implementation Evaluation are included:
• Stage 1: Assessing the Needs and Feasibility of the Program:
In preparation for designing ACCESSING CONNECTIONS an
implementation research review (stage 1) was undertaken to synthesize relevant
research, to identify the implementation variables (what is the best way to reach
parents to give them this information, where is the best place to hold sessions,
what are the things that parents will need or ask for in classes? Etc...) associated
with the program's success or failure and it helped me to synthesize methods
and use them rather than reinventing the wheel (Love, 2004). I was able to
identify key words related to the population I wanted to serve, the purpose of
ACCESSING CONNECTIONS and the model of the program. A literature
review using computerized library searches/internet was undertaken; articles
were reviewed for their relevance to my proposed program and how I wanted
the program to be implemented. I met with community and state resources to
determine needs and based the project on this information and
personal/professional knowledge. The following questions were asked or looked
at in this stage: What are the needs of the parents that have sought out
ACCESSING CONNECTIONS Education Program? Were similar programs ever
52
attempted? What were the obstacles to their success? What resources are needed
to make ACCESSING CONNECTIONS successful?
Stage 2: Program Planning and Design:
Especially because of the state of the economy in the nation at this time, I need
to be able to implement an effective and efficient program that is evidence based.
I want this program to be responsive to my target group of parents of children
ages birth through five with special needs and provide the outcomes to this
group that I am proposing throughout this project. A logic model has been
created that will depict the intended outcomes of the program and what steps or
activities will be undertaken to ensure the success and implementation of the
program. A logic model is a brief diagram that will show a picture of how I
predict ACCESSING CONNECTIONS working to help meet its intended goals.
A cause and effect relationship among resources, activities and outcomes will be
demonstrated. I would want to make sure that the logic model is clear to all that
need to be able to understand it as depicted on page 54 (Love, 2004).
53
Table 2
Logic Model: ACCESSING CONNECTIONS
Problem Statement: The program was designed to address the need for more accessible and comprehensive parent education, support
and advocacy programs for parents of children (birth through 5) with special needs/suspected needs
Theoretical Perspective: Bandura's Social Cognitive Theory, Heaney and Israel's theoretical perspective on Social Networks and Social
Support, Transactional Model of Stress and Coping and Interdependence Theory
Resources ' > Activities'^ Outputs i= :£> Short Term Goals c = S Long Term Goalsc Impact
•Partnerships • Developing • This program •Participants of this •Participants of this • The program will
with 3 large state educational provides parent program will become program will apply strengthen and
organizations programming for support and knowledgeable about skills and information broaden the parents
that support parents advocacy community and state learned knowledge of how to
parents of •Information packets education to resources • Participants will advocate for their child
children with will be distributed to parents of children •Participants will be report back each year •The program will
special needs families and sessions with special able to access at least 3 regarding what help them obtain
• In kind will be recorded for needs/suspected community resources changes have been information needed for
On financial support future use needs, between for support occurring in their life their child's care and
is available to the •Selection of staff to the ages of birth • Participants will in response to the to help them form their
program teach and be part of through age 5 demonstrate increased program own social support
• Presenters from the program • This program confidence in their • First group of networks.
many disciplines •Forming provides skills to advocate for participants returns to • Social support
will participate partnerships with opportunities to their child and will tell program to facilitate networks will help
• New state and community increase one story about how new support networks parents to carry over
Hampshire organizations participation in they advocated for current participants their learning to
Family Voices •Implementing the social support successfully for their of the program benefit their child and
will provide program to first networks child's needs • Previous their family
needed start u p cohort of individuals • Participants are • Participants will be participants provide •Participants will
costs •Develop an internet provided with the able to engage in a information to the maintain their ability
• Multiple related database of tools to gain parent support system database, of area to advocate for their
facilities information parents knowledge in the and retain support services and will help child and remain an
available for can access areas of support after the program has update it active participant on
program and advocacy ended their child's team.
Stage 3: Program Delivery Stage:
Data obtained throughout the program on participants enrolled, participation
in activities, type and intensity of services, use of services and participation in
support groups will be collected to help confirm whether or not the program
delivery was faithful to the plan for the program. Coverage Analysis will be
completed to provide information about acceptance of the program by the target
group and the extent of their participation. It will help ensure accountability that
the target population is reached by the program (Love, 2004). I would also want
to make sure that I analyzed data regarding the characteristics of the target
population to determine if the participants are really in need of the program so
that responsible use of the resources for the program occurs. I would also want
to examine any bias occurring in the program. Component Analysis will be
employed to help identify any contextual, structural or environmental factors
that could impact program development or participation and collect and use
data to ensure that the program was implemented the way it was intended to
(Love, 2004). Record keeping will be important for this program and it will help
to provide immediate feedback regarding how the program is progressing and
what impact it has on the participants. Questions asked related to this stage are:
Is the program serving the right mix of parents? Are parents rejecting the
55
program or not continuing in the program and why? Is the program being
delivered as planned? If no, why? Is the program moving towards achieving its
objectives? What obstacles are being encountered?
• Stage 4: Program Improvement Phase;
Evaluation of the program will be continuous to help improve the design of
the program, to modify the program and to strengthen services. Client feedback
will also be important and essential to guide further program development and
feedback will be obtained through feedback at the end of each session, then six
months post program, one year post program and yearly after that. Questions
asked related to this stage are: Is the program achieving its goals? What are the
strengths of the program? What are the weaknesses of the program? Is there
anything external to the program that is affecting its goals? What can be
improved?
Summative evaluation will be utilized upon the completion of the program
because, the overall goal of ACCESSING CONNECTIONS is to educate parents
about the services that their child (ren) can access to improve their life, health and
family time. This type of evaluation will be completed so that policy makers,
funding sources or potential adopters of the program, clearly understand the
benefits generated by ACCESSING CONNECTIONS as well as the costs and
56
essential conditions necessary to gain the benefits. I would like to use the data
obtained to provide evidence for the outcomes as well as to inform potential
clients who might benefit from adopting or continuing to use the program.
In order to obtain qualitative data, I would formulate questions for an
evaluation of the program, regarding the adequacy of the classes in meeting the
needs of the participants, what the parents felt the level of the experience of the
instructional staff was and if they thought they were helpful, the
appropriateness of the skills or information being taught; and finally, evaluation
questions may relate to the extent to which parents are meeting the objectives set
forth by the instructional program. Data collection instruments recommended
include questionnaires/surveys, interviews, focus groups or other assessment
measures (Sullivan-Soydan, 2008). Summative evaluation is very important
because it "provides documentation that program services are providing what
they state they are going to provide, and that the program can be justified for
future funding" (Sullivan-Soyden, 2008). Questions that I want to answer overall
are: Have the parents learned what they were supposed to after participating in
the classes? Are the classes helping and teaching what they were supposed to?
57
I would like to employ at least the two following approaches for evaluation of
my program: Objectives-oriented approaches - the focus is on making clear the
goals and objectives and measuring how the program has done in reaching them
and Participant-oriented approaches -program participants and stakeholders are
the key sources of both questions and the information to answer the questions.
The following evaluation areas: Relevance (refers to whether the program or
service is needed), Progress (refers to the tracking of the activities), Efficiency
(refers to whether the program results could be obtained less expensively),
Effectiveness (refers to whether the program results meet predetermined
objectives) and Impact (refers to the long-term outcomes of the program) may be
helpful to utilize as well.
Outcomes from evaluation of the program would help to guide further
cohorts, it would allow me to understand if I am meeting the needs of parents
with the classes, if I am reaching out to the right parents and if parents can use
information I am providing to them. If for any reason any of these answers are
negative, I will be able to find out why and address it to improve ACCESSING
CONNECTIONS and I will be able to make it more accessible to the general
public.
58
Chapter 5: Conclusion:
ACCESSING CONNECTIONS is significant to the pediatric population and
their parents, because it will be a program that will address the common needs of
parents of children with special needs in one place. It will be a program that will
be able to address diversity, culture and all levels of literacy. I will work with
already existing programs to promote their services and encourage parents to
interact with programs that will support their needs. ACCESSING
CONNECTIONS will also provide parents with a database of information that
they could reuse at any time and it will also provide them with a built in social
support network. Many parents of young children with special needs may also
appreciate that the classes will be recorded and available for future use as well
in-case they are unable to attend. This program promises to be supportive of
parents needs while providing them with the tools to manage the care of their
children therefore allowing them to be the parents they want to be.
Future objectives of program:
Future objectives of this program are to assist existing organizations in
promoting their programs and addressing the issue of referral for state and
community based services by healthcare professionals. My initial project that is
59
explained in detail above will hopefully be a springboard for future action in
areas of practice and the community that need to be addressed. I would like to
have Accessing Connections become part of a resource and referral center that
ultimately works for the families of children with special needs/suspected needs
and the community to provide the highest level of care for our children.
60
Chapter 6: Funding Plan
ACCESSING CONNECTIONS is a series of parent education/support classes
that will address common concerns of families of children with special
needs/suspected needs and ensure that parents are provided with understanding
of diagnoses and developmental concerns, how to cope with diagnosis and
disabilities, how to navigate healthcare and insurance, how to communicate with
healthcare and insurance companies, how to connect with educational,
community and state supports and how to interact with family members and
maintain a sense of family. I will utilize expert presenters on these topics as well
as provide question and answer periods after each class. It is my hope that
parents will find these programs helpful and also a way to form their own social
support networks from meeting with others in the classes. ACCESSING
CONNECTIONS will address a critical gap in service acquisition and delivery
for New Hampshire area families of children with special needs. The program is
designed to increase parents' understanding of state and community resources
for children ages birth through five and to help parents learn to advocate for
their child by increasing understanding of their own family's needs. I will be
partnering with New Hampshire Family Voices, Gateways Community Services
61
(Area Agency Region-6) and the Parent Information Center of New Hampshire
to further develop and disseminate this project.
62
parents, socioeconomic status etc...
AVAILABLE LOCAL RESOURCES
• Facilities for classes: facilities to hold classes will be provided free of
charge by either New Hampshire Family Voices or Gateways Community
Services for the first year of the program. After the first year, rentals of
rooms or payment for space will be needed.
• Volunteer Meeting/Training Room: will initially be provided by New
Hampshire Family Voices and Gateways Community Resources. After
the first year of the program, space may need to be purchased or rented
for a fee.
• Volunteer Coordinator (half time position 50%): this person is currently
on the staff New Hampshire Family Voices or Gateways Community
63
Services and therefore their salary will be paid for by their current place of
work
• Volunteers for program: local colleagues will be instrumental in
providing information for participants throughout the first year of the
program. They will be provided with gift cards of $50.00 each time they
present information, but after the first year of the program payment for
their services will be rendered.
• Initial Supplies for first cohort of program: initial supplies such as
binders, paper handouts, pens, markers and hole punchers will be
donated to program.
• Website for program: website will be linked to sites by N H Family Voices
and Gateways Community Services.
64
NEEDED RESOURCES
• Personnel: During Year Two of the program (second cohort), two part
time staff and six part time presenters will be needed. The two part time
staff would be the director of program and an assistant to the director. Six
part time persons would be those presenting information to parents
• Facilities: Community Meeting Place (to be determined) rental fee could
be approximately $300.00
• Equipment:
•S Chairs and desks for one to three offices (the use of desks and
chairs will be free for the first year of the program)
S Chairs and tables for a large classroom/community meeting
space (the use of a large classroom or meeting space will be free
for the first year of the program)
•S Chalk board/White board (the use of a whiteboard/chalkboard
will be free for the first year of the program)
•S Notebook computer/printer (the notebook computer used will
be my current computer and the printer that will be utilized will
be free of charge)
65
S Video recorder (the video recorder used will be my own)
•S Photocopier (for preparation of informational educational
material, paper and ink will be free for the first year of the
program)
• Supplies: Paper, pencils, chalk, markers, binders, highlighters (initial cost
is donated to program)
• Communications: phone charges (donated to program through use of
phones from New Hampshire Family Voices and Gateways Community
Services), postage (44 cents per letter x 1,000 letters)
• Materials Preparation: printing of handouts and family education binders
will be free of charge for the first year
• Travel for personnel: volunteers will not be paid for travel time during
first year of program, but will receive a $50.00 gas card after the program
has ended ($50.00 x 6 volunteers)
• Cultural competence training: payment to 6 volunteers to take training
($25.00 gift card each) and payment for presenter ($100.00 gift card)
66
Budget -
• Year 1 - Development of Operation of program before and
during initial cohort phase
S Personnel
Project Director Time is donated $0.00
Assistant Director Volunteer from New Hampshire $0.00
Family Voices or Gateways
Community Services
Expert Presenters (6) Volunteers will receive gift cards $300.00
$50.00 each for their participation
in presenting information during
classes
67
Project Evaluator Doctoral Student will volunteer $200.00
time and will receive a gift card
Development/Production of Educational Materials (Free of cost for first year of
program)
Development of Advertising/Promotion (Free of cost for first year of the
program except for postage)
Postage 1,000 mailings to prospective participants
44 cents/mailing $440.00
Other:
Gift cards for cultural competence training
6 at $25.00 and 1 at $100.00 $150.00
Gas Gift cards for volunteers $300.00
YEAR ONE TOTAL = $1390.00
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Year 2 - Operation/Maintenance of Program
NEEDED RESOURCES
• Facilities for classes to include Volunteer Meeting/Training Room: New
Hampshire Family Voices or Gateways Community Services will be paid
$300.00 a month for rental of their space to include an office and meeting
space furnished with chairs, desks, tables, whiteboard.
• Director of Program (half time position $20,000.00 salary for 12 months)
• Assistant Director of Program (half time position at $10,000.00 salary for
12 months)
• Class Presenters: local colleagues will be instrumental in providing
information for participants throughout the program. They will be
provided with a $1000.00 stipend for the year.
• Supplies for second year of the program: binders, paper, pens, markers,
and hole punchers will be donated to the program.
• Website for program: website will be linked to sites by N H Family Voices
and Gateways Community Services and this will be paid for through the
monthly rental fee.
69
• Notebook computer/printer: The notebook computer used will be my
current computer and the printer that will be utilized will be paid for by
part of the monthly rental fee.
• Video recorder: The video recorder used will be my own
• Photocopier: For preparation of informational educational material (paper
and ink) will be paid for through monthly rental fee.
• Communications: Phone charges (donated to program through use of
phones from New Hampshire Family Voices and Gateways Community
Services), postage (44 cents per letter x 1,000 letters).
• Materials Preparation: printing of handouts and family education binders
will be paid for by the monthly rental fee.
• Travel for personnel: volunteers will not be paid for travel time during
the second year of the program, but will receive a $50.00 gas card after the
program has ended ($50.00 x 6 presenters)
70
Budget -
• Year 2 - Operation of Program
S Rental Fee $3,600.00
•S Personnel
Project Director $20,000.00
Assistant Director $10,000.00
Expert Presenters (6) Presenters will receive a $6,000.00
$1,000.00 stipend for their
services throughout the year
Project Evaluator Doctoral Student will receive a $1,000.00
stipend for their time
71
Development/Production of Educational Materials (cost is included in the
rental fee per month)
Development of Advertising/Promotion (Free of cost for first year of the
program)
Postage 2,000 mailings to prospective participants
44 cents/mailing $880.00
Other:
Gas Gift cards for volunteers $300.00
YEAR TWO TOTAL = $38,180.00
This budget will be funded by grants, donations and possible state funding.
72
Potential Funding Resources:
The following are programs and grants that would be beneficial to explore to
help fund ACCESSING CONNECTIONS
S United Way of Greater Nashua, New Hampshire: This agency could
potentially fund parts of ACCESSING CONNECTIONS through
monetary donations
•S New Hampshire Family Voices: This agency could potentially fund parts
of ACCESSING CONNECTIONS through monetary donations
•S Gateways Community Resources: This agency could potentially fund
parts of ACCESSING CONNECTIONS through monetary donations
•S Statewide Early Supports and Services: This program at the state level
could fund ACCESSING CONNECTIONS as statewide program that
would be funded through their dollars
S United States Department of Health and Human Services Grants/
Maternal and Child Heath Bureau grants/Title V Block Grants
These grants would help to provide funding to ensure that ACCESSING
CONNECTIONS can provide programming to families that will lead to an
73
increase in access to health care, that would provide an increased ability for
community organizations and health professional to develop programs for
families that were positive in nature and that would allow families to participate
in education sessions to become informed partners in decision making efforts for
their child.
o Healthy Tomorrows Partnership for Children
Program (HTPC) grant
o Family/Professional Partnership-Children
with Special Health Care Needs Program
(CSHCN) grant
o Family/Professional Partnership- CSHCN and Family
Opportunity Act grant
o Cooperative Agreements for Comprehensive Community Mental
Health Services for Children and their Families, funded through
the Substance Abuse Mental Health Service Administration
(SAMHSA) grant
74
S Brendan and Liam Shanahan Foundation
This organization that was formed by a longtime friend and classmate is willing
to provide support and funding to ACCESSING CONNECTIONS participants to
enroll in parent education and advocacy training.
S University of New Hampshire Institute On Disability Program
It will be important to obtain faculty/student support for ACCESSING
CONNECTIONS to assist with writing grants and performing research for
program longevity. It would also be helpful to learn how ACCESSING
CONNECTIONS can utilize funds from the United States Department of Health
and Human Services Administration for Children and Families since the Institute
on Disability is part of the University Centers for Excellence in Developmental
Disabilities, Education, Research and Service grant funding program.
75
Chapter 7: Dissemination Plan
ACCESSING CONNECTIONS is a series of parent education/support classes
that will address common concerns of families of children with special
needs/suspected needs and ensure that parents are provided with understanding
of diagnoses and developmental concerns, how to cope with diagnosis and
disabilities, how to navigate healthcare and insurance, how to communicate with
healthcare and insurance companies, how to connect with educational,
community and state supports and how to interact with family members and
maintain a sense of family. I will utilize expert presenters on these topics as well
as provide question and answer periods after each class. It is my hope that
parents will find these programs helpful and also a way to form their own social
support networks from meeting with others in the classes. ACCESSING
CONNECTIONS will address a critical gap in service acquisition and delivery
for New Hampshire area families of children with special needs. The program is
meant to increase parents' understanding of state and community resources for
children ages birth through five and to help parents learn to advocate for their
child by increasing understanding of their own family's needs. I will be
partnering with New Hampshire Family Voices, Gateways Community Services
76
(Area Agency Region-6) and the Parent Information Center of New Hampshire
to further develop and disseminate this project.
77
parents, socioeconomic status etc...
DISSEMINATION GOALS:
LONG TERM GOALS
1. By disseminating ACCESSING CONNECTIONS, the State of New
Hampshire would be provided with a reputable resource for parents to
use, for services and assistance, whether or not their child qualifies for
early intervention services.
2. By disseminating ACCESSING CONNECTIONS, specialized services
provided throughout the State of New Hampshire to children ages birth
through five with special needs will be highlighted and further utilized
therefore strengthening service delivery and funding for services.
78
SHORT TERM GOALS:
1. Implementation of a new and comprehensive program in the State of New
Hampshire.
2. Increased knowledge and awareness of programs in the state by families,
therapists and other organizations therefore increasing referrals to these
services.
TARGET AUDIENCES:
Primary audience is parents of children ages birth through five with special
needs or suspected needs.
Secondary audience is organizations providing services to children with special
needs throughout the State of NH as well as doctors and therapists in all
disciplines
KEY MESSAGES:
Primary Audience:
1. ACCESSING CONNECTIONS is a culturally competent and culturally
relevant program that provides assistance (for advocating, obtaining specific
services and forming social support networks) to families of children with special
needs/suspected needs ages birth through five
79
2. Participants will be grouped for education/support programs based on their
choice to be involved in specific groups related to culture, ethnicity, educational
level, language spoken in the home, marital status and age of parents/children
specific groups versus non specific groups
3. Participants will be afforded the opportunity to form their own social support
networks throughout the education courses and they will be groups that parents
can choose to continue to be with long after the education classes are completed.
Secondary Audience:
1. ACCESSING CONNECTIONS will assist organizations already formed with
disseminating their products to families of children ages birth through five with
special needs/suspected needs, thereby increasing referrals to programs already
in place.
2. ACCESSING CONNECTIONS will maintain a database that will be easily
accessible by organizations and families to use as a resource to obtain services for
specific needs.
80
SOURCES/MESSENGERS:
Representatives from both New Hampshire Family Voices and Gateways
Community Services will be influential spokespersons for this program
especially for the primary audience. I have already partnered with these
agencies to provide the education classes and they are already in contact with
many other organizations that would benefit from ACCESSING
CONNECTIONS promoting their unique abilities to help families of children
with special needs.
Expert presenters will be influential spokespersons for the secondary audience as
they will be colleagues that could be involved in community agencies and
groups that will be participating in ACCESSING CONNECTIONS.
DISSEMINATION ACTIVITIES, TOOLS/TECHNIQUES, TIMING, &

RESPONSIBILITIES
PRIMARY AUDIENCE: PARENTS
Written information:
•S Brochure (to be created by August, 2009)
•S Article in local parenting magazines, newsletters to be placed in
doctors' offices/therapy offices (to be created by August, 2009)
81
Electronic media:
S Web site linked to Gateways Community Services and New
Hampshire Family Voices (developed by September, 2009)
•S Pod cast/Talkshoe program (developed by myself and other
presenters by October, 2009)
S Video tapes of classes for rental (developed by staff and
available after first cohort of program is complete by
September, 2010) projected official start date of program to
be January, 2010)
•f Televised on community channels (group effort to start
during second cohort in January, 2011)
Person-to-person contact
•S Workshops/education classes (by myself and presenters,
throughout each cohort)
•S Phone calls (by myself and presenters, throughout each
cohort)
82
SECONDARY AUDIENCE: Organizations providing services to children with
special needs and or suspected needs, throughout New Hampshire as well as
doctors and therapists in all disciplines
Written information:
•S Brochure (to be formed by myself by August, 2009)
•S Article in local parenting magazines, newsletters to be
placed in doctors' offices/therapy offices (to be written by
myself by August, 2009)
Electronic media:
•S Web site linked to Gateways Community Services and New
Hampshire Family Voices (developed by September 2009)
•S Pod cast/Talkshoe program (developed by myself and other
presenters by October, 2009)
•S Video tapes of classes for rental (developed by staff and
available after first cohort of program is complete by
September, 2010) projected official start date of program to
be January 2010)
S Televised on community channels (group effort to start
during second cohort in January 2011)
83
Person-to-person contact
•f Workshops/education classes (by myself and presenters,
throughout each cohort)
•S Phone calls (by myself and presenters, throughout each
cohort)
•f Class to be offered to community
personnel/therapists/doctors on how to refer parents and
families for services, how to help parents advocate for their
needs, how to form positive partnerships with families, how
to work with families going through difficult times (to begin
simultaneously with first cohort of parent program)
BUDGET:
The budget includes the needed materials for both audiences
• Development of Advertising/Promotion $18,000
EVALUATION:
WRITTEN MATERIALS: will send out short surveys with Likert Scales and
short narratives to participants of the programs (both parent programs and
community/therapist programs) to obtain feedback on how the written materials
84
provided had an impact on how easily parents were able to understand the
material presented. The surveys will be sent out after each cohort of participants.
A successful outcome of the survey will be 90-100% positive responses on
returned surveys with feedback indicating that parents were able to easily
understand written material.
ELECTRONIC MATERIALS: will send out short surveys with Likert Scales and
short narratives to participants of both programs to determine the impact of this
method of dissemination. These will be sent out after each cohort of participants.
A successful outcome of the survey will be 90-100% positive responses on
returned surveys with feedback indicating that parents were able to easily
understand electronic materials
EDUCATION CLASSES: will send out short surveys with Likert Scales and
short narratives to participants of both programs to determine the impact of this
method of dissemination of information for ACCESSING CONNECTIONS.
These will be sent out after each cohort of participants. A successful outcome of
the survey will be 90-100% positive responses on returned surveys with feedback
indicating that parents were able to attend classes and benefitted from all
materials.
85
Appendix A:
Annotation #1
Ainbinder, J. G., Blanchard, L. W., Singer, G. H., Sullivan, M. E., Powers, L. K.,
Marquis, J. G., et al. (1998). A qualitative study of parent to parent support for
parents of children with special needs. Journal of Pediatric Psychology, 23,2, 99-109
Study Focus: The purpose of this study was to examine qualitatively the
experiences of parents participating in a Parent to Parent support program.
Parent to Parent support programs offer assistance (in the form of social support)
to parents and match them in a one to one relationship with a veteran supporting
parent, who has a child with a similar diagnoses and need. Training is typically
is provided to the supporting parent on support techniques and how to offer
information and emotional support to his or her referred parent. Parent to
parent support is meant to decrease documented stressors including: difficulty
accepting and adjusting to their child's disability, financial demands for
necessary medical equipment and care, limited or no accessible information
about their child's disability, time management conflicts, appropriate respite care
and other services to relieve their caretaking activities (p.99).
Methods: This study was completed by investigators in New Hampshire, North
Carolina, California, and Kansas. Three hundred and forty parents of children
86
with special needs were randomly sorted by computer into two total groups, one
by site and one by whether they felt the program (Parent to Parent) was helpful.
Of these parents, 38 names were randomly selected to be contacted about
participating in the study and 24 parents responded favorably. Parents included
23 mothers and one father ages 22-51 (M=37). Eighty three percent of the parents
were Caucasian and 17% were African American. Children's age ranges were 1-
16 (M=7), with 38% under the age of 5. Children lived at home with a wide range
of disabilities. Twenty-one semi-structured telephone interviews (using a
standardized interview guide) were completed by one person trained in
psychology research that was not a parent of a child with special needs or
associated with the program. Recorded interviews lasted between 15 and 45
minutes and were transcribed. Interviews were coded using an interactive
process in which themes were identified from reading the transcripts of the
interviews. Many different iterations of the coding were used to analyze factors
that kept the parent to parent program from working. It was not clearly
indicated as to what the final coding system was but the final system was
assisted by the program HyperQual.
Results: A successful parent to parent match for the program relied on the idea
of a "reasonable ally" in the supporting parent. A "reasonable ally is comprised
87
of four main components: perceived sameness, situational comparisons that
enable learning and growth, round the clock availability of support and
mutuality of support (p. 103). Logistical barriers of the program identified were
parent's busy lives, long distances between parents/difficulty paying for phone
bills, lost phone numbers and negligent supporting parent follow-up. Parent to
parent support was found to create a "community of similar others trained to
listen and be supportive". It was noted that there needs to be quality control in
the management of the parent to parent program specifically from improved
matchmaking and follow-up efforts in the parent to parent support groups.
Increased program funding to cover phone costs of parent contact was found to
be needed. It was also found, that a program like parent to parent support
should be supported by pediatricians and family doctors who can encourage
parents to look for support and contacts.
Critique: Strengths: The sample was randomized and represented a large
geographic area of the United States (NH, KS, NC and CA). Other strengths were
that parents perceptions of services was paramount and that the findings
supported the importance of equality and mutuality that successful supportive
relationships that lead to self worth and empowerment of parents (p. 107).
Limitations: The sample was very small, with only one father included. The
88
coding system was not clearly stated and it was not clearly stated, which parents
came from which state or where successful parent to parent programs are located
to learn information from.
Relevance to Project: This study supports the use of parent-to parent support
programs. Thirty eight percent of the children in the study were under the age of
5 with a wide range of diagnoses and severity which matches my targeted
population. I hope to create parent to parent support groups by fostering
socialization during my parent education classes. This article specifically helps
me to understand what parents are looking for when matched with another
parent. I also hope to include both parents in the groups and classes, I would like
to know how fathers feel when they are involved and it has led me to want to
specifically interview fathers that participate in my programs to have a better
understanding of their feelings.
89
Annotation #2
Chernoff, R. G., Ireys, H. T., DeVet, K. A., & Kim, Y. J. (2002). A randomized
control trial of a community based support program for families of children with
chronic illness: Pediatric outcomes. Archives of Pediatrics and Adolescent Medicine,
156, 6, 533-539.
Study Focus: The purpose of the study was to develop, implement and evaluate
child outcomes of a 15 month community based family support intervention, that
was designed to reduce the risk for poor adjustment and mental health problems
in children with one of four illnesses (diabetes mellitus, sickle cell anemia, cystic
fibrosis or moderate to severe asthma) and their mothers.
Methods: The study was a randomized, controlled clinical trial design with
multiple measures of mental health based on both child and parent reports,
taken one year apart. Children ages 7-11 with the above listed chronic conditions
and 136 mothers were enrolled and randomly assigned to the experimental or
control groups. Data was collected in 45-90 minute face to face structured
interviews at base line and 12 months later. The setting of the community based
15 month intervention was linked to 11 subspecialty clinics and 5 general
pediatric and practices. The intervention/experimental group titled "family to
family network" was designed to reduce the risk for mental health problems via
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an intervention that had 2 components. One component called KIDS was
designed for enhancing mental health, adjustment and self esteem in children
with chronic illness and was implemented by 3 child life specialists (CLC's). The
other component focused on the mothers and a selected trained group of veteran
"experienced mothers of older children". This group was called Network
Mothers - NM. This component focused on the use of regular phone contact
(initiated by the Network Mothers) and weekly meetings for the experienced
mothers to provide support to the new parents to go over significant issues that
the mothers or children may be facing. A Pediatrician and social worker also
attended the meetings to provide support to the team. The mothers that
participated in the control group were given phone numbers of experienced
mothers to use if they wished. The parents supporters had no specific training,
didn't initiate phone calls and the children did not participate in the KIDS
program mentioned above. Main Outcome Measures include Personal
Adjustment and Roles Skill Scale (PARSIII), Children's Depression Inventory,
The Revised Children's Manifest Anxiety Scale and 4 subscales of the Self
Perception Profile for Children to assess mental health, anxiety and stress of
children and mothers.
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Results: At the end of the study 72 families were in the experimental group and
64 families were in the control group. Bi-variate analyses indicated that the effect
of the intervention was more pronounced for those children who had low self
esteem at baseline. A child's ability to adjust to their chronic illness increased in
the experimental group, especially if the children initially had low self esteem.
This study demonstrates that "family support intervention has modest positive
effects on the adjustment of children with selected chronic illnesses, and was
similar across the board for all diagnoses mentioned" (p.538).
Critique: Strengths: The sample was large and sufficient for reasonable
statistical power and it was a randomized trail design completed in the United
States. Limitations: The sample may not be representative of the broader
population of families of children with chronic health problems because of
selection bias. The study did not include assessment of the mental health of
fathers and siblings. Many of the families received a low dose of the intervention
and the potential influence of the intervention may not be well represented.
Relevance to project: Many children and families that deal with special needs
have increased stress and difficulty coping with outcomes of disabilities and
chronic conditions. Coping strategies and the needs of the children and families
could be further explored as part of my project. The importance of this study was
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that both the experimental and the control group were given the opportunity to
form parent support relationships that helped them to deal with advocacy and
needs issues. Although the study was mainly about mental health needs, the
information is applicable, because I have to look at all the needs of the families
and children that would benefit from services. This study has given me a greater
understanding of the multifaceted work needed for my project. I also need to be
mindful that the children participating in this study did not match the age range
included in my project, so the information gleaned from the article should be
taken into consideration and I should be aware that the needs of my targeted
population may be different.
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Annotation 3
Stewart, D., Law, M., Burke-Gaffney, J., Missiuna, C , Rosenbaum, P., King, G., et
al. (2006). Keeping It Together (tm): An information KIT for parents of children
and youth with special needs. Child: Care, Health and Development, 32,4, 493-500.
Study Focus: The purpose of the study was to develop and evaluate a Parent
Information KIT. The KIT is an "information management system and child
advocacy tool designed to assist parents in getting, giving and organizing
information regarding their child, in an effective way" (p.493).
Methods: Draft one of the KIT was pilot tested with 21 parents and 9 service
providers in 2 communities in Ontario, Canada. It was designed for parents of
children and youth with special needs ages birth-21. Questionnaires and focus
groups were used to evaluate the use of the tool and parents satisfaction with it.
Based on the findings of draft one, a second version of the KIT was developed
that included recommendations of how to put it together and better ways to
utilize it. The KIT (Keeping It Together) was evaluated a second time by a
sample of 440 parents. The main outcomes of use, utility, impact and the
perceptions of family centered care were measured at baseline (time 1), after 16
months (time 2) and after 15 months (time 3). Complete data was collected from
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439 participants at time (1), 268 at time (2), and 206 at time (3). Interviews were
completed by an independent evaluator for 20 parents over 6 months of use of
the KIT and perceptions and further suggestions for the KIT were explored. The
KIT includes a customized binder with a manual of strategies, tips and resources
such as record keeping forms in an accordion style folder. This KIT helps to
teach parents how to organize their child's health and developmental
information in an effective way, therefore promoting a family's ability to be
effective communicators of their child's needs.
Results: The first draft of the KIT yielded results of overall satisfaction with its
design and utility for parents and for service providers. The organization, ease
of understanding, ease of use and relevance of the KIT for families and their
children was paramount. Results of the impact questionnaire found that parent's
perception of their ability, confidence and satisfaction when using the KIT
improved significantly. Parent's perceptions of service provider's care also
increased considerably. The final model of the KIT demonstrated parents
perception of the use and utility of the KIT had a low to moderate positive effect
on the perception of the impact (.31) and a moderate positive effect of perception
of the KIT on participants perception of care (.52). Increased use/utility of the
KIT led to significant changes in perceptions of care such as increasing parent's
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engagement with service providers (p.499). Results indicate parents were using
the KIT in a many situations and in several different systems such as healthcare,
education and social services. Use of the KIT also assisted families in finding
new resources as well as providing increased advocacy skills. Parents stated that
the KIT would be of "great use to parents of children newly diagnosed and are
just entering the service system" (p.498).
Critique: Strengths: Positive outcomes of the KIT directly related to the
significant increase in parents perceptions of their ability and self confidence in
getting, giving and using information related to their child's care and needs.
Limitations: The two biggest limitations were the before-after design of the
evaluation because it did not allow for comparison with families who did not use
the KIT and the attrition especially from time 2 to 3. Those that did not continue
in the study felt they did not have time to set the KIT up properly.
Relevance to Project: The increased need for parent support, a way to
communicate better with medical and therapeutic professionals, the need for
increased knowledge of their child's diagnosis and the need to maintain and use
information related to their child to assist in arranging and receiving services
were common themes found not only in this study but in other studies
highlighted throughout the article. These common themes are applicable to my
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doctoral project because they highlight common issues for parents and can help
me to provide a program that can make access to services easier. I now
understand that when I try to introduce this type of organizational strategy, I
need to make sure that there is education behind what I am doing or the families
may not be invested enough to go through with a program. I also need to keep in
mind that the children participating in this study did not match the age range
included in my project so this information should be taken into consideration
and I need to also be aware that the needs of my targeted population may be
different.
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Annotation 4
Hinojosa, J., Sproat, C. T., Mankhetwit, S. P., & Anderson, J. M. (2002). Shifts in
parent-therapist partnerships: Twelve years of change. American Journal of
Occupational Therapy, 56, 5, 556-563.
Study Focus: The purpose of the study was to "identify occupational therapists'
current attitudes and values in the working relationships with parents of
preschool children with developmental disabilities after 2 decades of legislative
support and educational efforts" (p.556). In 1987 (original survey) Occupational
Therapists working with parents of children with cerebral palsy did not believe
that basic professional education had adequately prepared them for working
collaboratively with families or in counseling parents of children with
disabilities.
Methods: Surveys were sent to a random sample of 400 Occupational
Therapists from the Developmental Disabilities Special Interest Section of the
American Occupational Therapy Association. Surveys returned represented 46
states, the amount of them returned equaled 327 and only 199 therapists
identified themselves as currently working in preschool settings. Demographic
differences among respondents were analyzed using chi-square analysis for
independence at the alpha level of .05. After calculating descriptive statistics for
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each item in the survey a one-way analysis of variance (ANOVA) was performed
for 4 demographic variables (OT's age, place of practice, years in pediatrics and
degree attained) to determine whether total scores on the survey differed
significantly on the basis of the independent variables.
Results: Demographic information of OT's participating in the research: 61.2%
of respondents had a BSOT degree 36.7% had an MSOT degree and 1% had a
doctoral degree, 38.1 % worked in preschools, 12.7% worked in private settings
and 12.7 % worked in home based therapy and female respondents equaled 97%;
For OT's attitudes towards working with parents: many OT's felt that they
worked best with parents who were invested in their child's progress and most
reported that they considered working with parents to be an important aspect of
OT intervention. Many therapists (72.5%) reported that their professional
education adequately prepared them to work with parents, 76.6% felt that
working with parents has a greater impact on children than any other aspect of
intervention and 59.4% believe that therapists do not have enough time to spend
with parents; For OT's perception of the attitudes, concerns and needs of
parents: The highest ranking parental concern about a child's progress was
related to ambulation @ 49.5% and speech and language concerns rated as the
second highest concern. Many OT's (29.7%) ranked parents having difficulty
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adjusting to their child's disability as an issue during interactions with them, and
26.6% of therapists felt that it was the child's progress in therapy that parents
ranked as a high priority; For OT's roles with parents and issues: It was found
that 30% of time in a therapy session is usually spent directly related to parent
concerns during a visit. It is also important to explore parental goals, help
parents understand therapist roles, provide information about the abilities of the
child and instruct parents on home programs as well as to provide support and
information on advocacy programs and support programs. Difficulties and
satisfactions that arise from therapists working relationships with parents:
Dealing with parent denial, unrealistic expectations and an inability to recognize
child needs ranked high in score of being difficult challenges therapists face.
Another theme was parental noninvolvement (parents often expected others to
assume care of their child and they did not follow through with
recommendations). The most satisfying aspects of working with families that
were identified were: that parents often placed trust in therapist's professional
judgment and in the parent therapist relationship, increased parental
empowerment, parental appreciation of services and parent acceptance of child's
disability.
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Critique: Strengths: The study explored occupational therapists (OT's) feelings
regarding working with parents of children with special needs and how well
OT's feel they are prepared to take on this role. Limitations: A small sample of
therapists replied to survey and test retest reliability was not done, therefore
results of the study were limited to therapists' interactions with parents, mainly
mothers of preschool children. Findings could not be generalized to the vast
majority of children with special needs that were not in preschool. I was also
unaware of what states were included in the study therefore it may not be
applicable to my area.
Relevance to Project: This study is applicable to my project, in so that I can be
cognizant of how therapists feel when presenting information to parents. This
study will also help me, when I try to plan a class for professionals regarding
parent support and advocacy. Understanding the results of this study will allow
me to prepare a lecture for therapists and other professionals on how to provide
support and advocacy.
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Annotation 5
Rodger, S. M. (2005). Getting the run around: accessing services for children with
developmental coordination disorder. Child: Care, Health and Development, 31,4,
449-457.
Study Focus: The purpose of the study was to gain a greater understanding of
the experiences of parents of children with DCD in accessing services and in turn
to provide/alert healthcare professionals to the importance of listening to parent
concerns and allowing them to express their worries/fears.
Methods: A qualitative design incorporating in-depth interviews,
phenomenological approaches and criterion sampling was used (all participants
met the same criteria of having accessed services for a child with DCD). Parents
of 10 children that ranged in ages from 7-12 years with the diagnosis of DCD
were interviewed. The children attended Kids Skills Clinic at the University of
Western Ontario and were referred there by their parents, teachers, doctors or
psychologists. The Movement Assessment Battery for Children was used to
assess all children and they all had scores that put them below the 15th percentile.
Parents also completed a demographic questionnaire that indicated difficulties in
relation to academic skills and activities of daily living. All children engaged in
10 sessions of therapy based on cognitive orientation to daily occupational
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performance. At later stages of the therapy one or both parents were interviewed
(12 in total 10 mothers and 2 fathers) and asked 3 questions: "What brought you
to the clinic? What sorts of motor performance difficulties did you observe and
Why do you think it is important that children are able to do these things"
(p.450-451). Credibility, transferability, dependability and confirmability were all
taken into account with the rigor of the study.
Results: Results were broken down into two terms: common participation problems
experienced by children with DCD that led parents to seek referral and services
and the parent's journey to access services. Common participation problems
included, general clumsiness, mixed/uneven motor skill development,
difficulties participating in play and leisure activities, difficulties with self care
skills (especially dressing/ eating/ organization), gross motor skills, missed social
opportunities/decreased ability to keep up with friends, fine motor skills and
difficulties with handwriting. Parents were often frustrated with the health and
educational systems as there seemed to be several overall themes such as their
feelings being trivialized, they felt they were going at it alone and that they were
given the run around by service providers. Parents also felt that the schools did
not recognize medical feedback; they felt that teachers tried to explain away their
children's difficulties and that DCD is usually not treated in the school system.
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Parental advocacy appeared to be a critical factor enabling these parents to find
appropriate services.
Critique: Strengths: Recommendations were included to assist parents that are
attempting to access services and to help them specifically to advocate within the
school system. The study reviewed both parent's needs and the needs of the
child and explained that without advocacy, parents would not be able to get as
far as they have in trying to get DCD recognized by the school systems.
Limitations: There was a small sample of parents and children in the study, it
only reflected one diagnosis and the age group was older than what is intended
for my project.
Relevance to Project: "Between 5%-10% of school aged children have motor
difficulties consistent with Developmental Coordination Disorder (DCD) that
affect performance in ADL's, sports, leisure activities and school work.
Involvement in these occupations is critical to development of self esteem, self
efficacy and social adjustment" (p.449). Parents often found it difficult to
navigate both healthcare and the educational system to find a diagnosis and
appropriate interventions/services for their children. This study assists me in
understanding the need to obtain life stories of those that I want to teach about
how to advocate for their children. I also need to understand what families are
104
dealing with at home as well as when trying to access services in the community.
I need to learn this information to help me gear my classes towards talks that
would be beneficial to parents. Even though the study had limitations it gives
me an understanding of what parents may be facing as their child gets older and
will allow me to create a transition class from ages 5 and up with greater
confidence in what parents might need in order to face the challenges head on
with confidence.
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Annotation 6
Perrin, E. C , Lewkowicz, C , & Young, M. H. (2000). Shared vision: Concordance
among fathers, mothers and pediatricians about unmet needs of children with
chronic health conditions. Pediatrics: Official Journal of the American Academy of
Pediatrics, 105,1, 277-285.
Study Focus: The purpose of the study was to: "determine the extent and
characteristics of agreement among mothers, fathers and physicians regarding
the unmet needs of particular children with chronic health conditions and their
families and to investigate the factors associated with greater or lesser disparity
among different participant's perceptions of these needs" (p. 278).
Methods: "Eleven pediatricians from 5 practices throughout Massachusetts
participated. Families were identified via billing records for the two years prior
to the study and a range of diagnostic codes using the ICD-9 Coding System
were used to obtain participants. Chronic health conditions were defined as a
condition that had lasted or was expected to last more than 1 year or more, and
that could be expected to require made for the study more than the usual amount
of medical supervision" (p. 278). There were 4 diagnostic subgroups: children
with respiratory condition only (i.e. asthma, otitis media), neurologic condition
only (i.e. cerebral palsy, seizure disorder, mental retardation), children with a
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wide variety of other conditions such as diabetes, cardiac conditions and
orthopedic issues and a group of children with either a neurological or
respiratory condition in addition to a different chronic condition identified in the
3 rd group. Billing data identified 234 children as having a chronic health
condition and 163 provided informed consent as well as demographic
information and were enrolled for a 70% participation rate. Children ranged in
age from 2 months to 15 years with an average of 6.78 months of age, 48% were
female, 33 children had multiple conditions, 25 had a primary respiratory
condition, 39 had a neurological condition and 22 had a variety of other
conditions.
Results: Mothers and Fathers reported a high level of agreement about the
severity of their child's condition and the number and types of needs that were
insufficiently met independent of the diagnostic category. The only consistent
disagreement between them was mothers had a greater desire for social contact
with other families facing the same issues such as using a parent to parent
program or family voices organizations. Parents who rated their children as
more severe indicated a larger number of needs. Despite a high level of
concordance with pediatricians there were consistent differences between
parent's views and doctors. Doctors rated severity of illnesses as greater but the
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extent of children's unmet needs as lower than parents. The pattern did not
differ by condition or diagnostic category. Pediatricians did see the need for
more information to be given to families whose children have more severe
conditions that impact the families the most. Pediatricians were unaware of how
often parents are interested in being involved in groups, networking and
counseling and were less likely to identify a need for care coordination.
Critique: Strengths: Various statistical methods were used to obtain
information. Recommendations were made for families and their primary care
physicians to be centrally responsible for identifying, obtaining, coordinating
and monitoring a wide range of services for children with chronic health
conditions. The article also highlighted that care coordination is challenged by
scheduling and finances. It gave a suggestion to make systematic and universal
arrangements for financial risk adjustment and modification in the organization
of practice systems to help families by providing more comprehensive care for
children. Limitations: The sample 70% was drawn from a group of pediatricians
with particular interest in the care of children with chronic health conditions in
one state and cannot reflect a standard of care for general practice. The study
may not accurately identify the true population of children with chronic
conditions and their families.
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Relevance to Project: In relation to my project the data from this research
indicated the need for "pediatricians to be more aware of what families of
children with chronic health conditions need and suggested that a mechanism
needs to be found to integrate regular communication between parents and
doctors about a family and child's long term needs" (p.283). As I plan my parent
education classes this is something that I can speak to my interested
organizations about possibly finding a way to incorporate into practice. If
parents feel supported by medical professionals they may be more likely to seek
support from others and have it be beneficial., I am now more aware of needing
to look at a number of practices in the state of New Hampshire and in more than
my surrounding towns of parents to gain information that I may need for my
project. I want my project to be well rounded and reflective of the needs of the
state rather than a few small towns.
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Annotation 7
Graungaard, A., & Skov, L. (2006). Why do we need a diagnosis? A qualitative
study of parents' experiences, coping and needs, when the newborn child is
severly disabled. Child: Care, Health and Development, 33, 3, 296-307.
Study Focus: The purpose of the study was to investigate parents' reactions
when first realizing their child's disability, the impact of the diagnosis and
parents' ways of coping with their child's needs. In addition another purpose of
this article was to address initial experiences with health professionals and how
they interact with families. The article also highlighted parents' wishes and
needs for communication, which supports parent support and advocacy at all
levels.
Methods: Longitudinal interview study of 16 parents (8 couples) of severely
disabled children, all interviewed (1.5-2 hours in duration) twice and audio-
taped, simultaneously recorded and transcribed verbatim. The first interview
was at least 3 months after the initial disclosure of the disability and the second 2
years later. An interview guide was used that included main themes of parents
perception of the diagnostic process and disclosure, parents ways of managing
practical and emotional demands in the initial phase, parents perceptions of their
child, of the consequences for their future life and parents ways of mobilizing
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resources. All data from the interviews was approved by the participants.
Recruitment was in cooperation with doctors of the pediatric department and
neonatal ward as well as the department of clinical genetics and the National
University Hospital Copenhagen, Denmark. Eleven suspected severely disabled
children were invited to participate and 8 remained in the study that were
between the ages of 1-27 months at the time with the majority of them in the 1-10
month old age range. Only parents of children with inborn severe mental and
physical disabilities that were recently diagnosed were included in the study.
Results: The main finding of the study was that parent's experiences and
possibilities for coping when realizing that their newborn child is disabled are
strongly influenced by the nature of the diagnostic process and the certainty of
the stated diagnosis (p.299). Five main themes were identified that were of
central importance in parents experiences and they were: creating future images,
identifying possibilities of action, perceiving the child and communicating with
health professionals as well as implicit expectations of the healthcare system. It
was also understood, that the fathers and mothers in the study were not always
at the same point on the emotional scale at the same time which could have
impacted communication. Parent's coping strategies identified in the study were:
problem focused such as collecting information, learning new skills and seeking
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training as well as emotionally focused such as retaining hope, seeking social
support and creating future images. Under the theme identifying possibilities of
actions, many parents felt uncertain as to whether the training offered by
healthcare and social systems was enough and often felt a lack of support in their
own efforts to stimulate their child. The parent's needs for communication as
shown in the results are consistent with other findings that parents prefer a
proactive and individualized service plan to be in place.
Critique: Strengths: Validity of the findings was secured using the Grounded
Theory method and coding was validated by the two authors as well as the
interviewees. The age range of population explored in study directly related to
my doctoral project as did the five main themes of the study. Limitations: Items
that impacted the quality of the study were as follows: unbalanced
representation of interviewees in terms of educational level, socioeconomic
status and geographical location as well as exclusion of parents of foreign origin.
Relevance to Project: It is important to realize that first impressions of
healthcare experiences are very important to families of children with special
needs. As health professionals we need to understand and provide support for
families going through the diagnostic process. It is my hope that the classes I
provide families include support that the parents identified in the main themes
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of the study. The limitations of the study are important to take into account
when I am setting up my classes and presentations. I need to make sure I am
providing families with relevant information in a clear and concise manner,
which is easily understood. I need to make sure that the area of the state that I
hold my presentations in is located centrally to where many people need these
services.
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Annotation 8
Bailey, D. B., Hebbeler, K. P., Scarborough, A. P., Spiker, D. P., & and Mallik, S. P.
(2004). First experiences with early intervention: A national perspective.
Pediatrics: Official Journal of the American Academy of Pediatrics, 113, 4, 887-896.
Study Focus: This purpose of this planned longitudinal study was to ascertain
families' initial experiences in determining their child's eligibility for early
intervention, their interactions with medical professionals, the effort required to
obtain services and their interactions with professionals.
Methods: A 3 stage stratified sampling procedure was used to identify the
sample for the study in which 20 states were identified to participate as well as 3-
7 counties per state. Children were selected, who were enrolled in EI between
September 1997 and November 1998 and were less than 31 months of age when
the initial Individualized Family Service Plan (IFSP) was begun. A total of 3338
families agreed initially to participate in an interview that covered a variety of
topics including characteristics of the child, characteristics of the family, the early
identification process, initial services being provided and perceptions of the early
identification and EI experience 16 weeks into services for the family. Only 2974
initial interviews were completed within the 16 week timeline so this is what the
results of the research are based on.
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Results: It was found that most children were eligible for EI services because of
Developmental Delay (62%), with 22% eligible due to a diagnosed condition with
a high probability of resulting in delay and 17% were eligible because of more
than one risk factor being met. First concerns for families seeking EI services
were expressed at 7.4 mo of age. Children were first diagnosed with difficulties
at 8.8 months, EI services were first sought at 11.9 months, with referral to EI
programming at 14 months and the IFSP was developed at 15.7 months. About
86% of families discussed their concerns regarding their child within the first
month of their birth with the pediatrician and found them to be a source of
support, 22% said medical professionals were somewhat helpful and 12% said
that the doctor was not helpful at all. Approximately half of the respondents
indicated that it took no effort at all to find EI services, 43% found that once they
were enrolled no effort was required to obtain further services, 11% of
participants said a lot of effort was required to find out about services and 9%
reported that it took a lot of effort to get services started once they were
identified. Families (76%) felt that their child was getting the right amount of
therapy and 82% felt that they were getting the right amount of EI, but 1 in 5
respondents indicated that their child was getting less therapy than needed and
13% reported that their child was getting less EI services than needed. A small
115
percentage of families experienced difficulty in accessing services and feel that
the amount of services received is inadequate and ~l/5 of the families were not
aware of the written plan for goals and services.
Critique: Strengths: The study is unique because it is the first to reflect parental
perspectives and can be said to reflect the state of the nation (at the time) on the
variables presented. It also demonstrated that ethnicity, income and education
level were associated with less favorable experiences and suggests the need to
develop models, practices, and professional skills that are more supportive of the
entire array of families who need access to EI and its delivery system.
Limitations: The findings are based on a few questions conducted in a phone
survey and the study only includes families actually enrolled in EI programs. It
was hard to ascertain what states were involved in the study and that the states
can interpret Part C of IDEA differently therefore there are changes in how hard
or easy it is for a child to be awarded services.
Relevance to Project: Only about 1.8% of children ages birth through age 2 and
- 5 % of children ages 3-5 receive special education or early intervention services
in the United States. There is considerable variability across states in the nature
and extent of services provided. Families of young children with disabilities are
116
eligible for early intervention (EI) services as mandated by Part C of the
Individuals with Disabilities Act.
This article and its findings are important to my project because of the age range
assessed and that families were asked specific questions that would spark
interest in them to find out more information regarding their child and level of
services being received. I also felt that I had a better understanding of families
and their needs related to early intervention and that I can possibly tailor my
parent courses around what is known already, what is not known and what
families can do to become involved in EI process.
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Annotation 9
McGill, P., Papachristoforou, E., & Cooper, V. (2005). Support for family carers of
children and young people with developmental disabilites and challenging
behavior. Child: Care, Health and Development, 32, 2,159-165.
Study Focus: This purpose of this study was to gain information from parents of
children with disabilities, about help received regarding their child's challenging
behavior. Parents were asked about medication, psychological and
communication advice received from healthcare professionals. If families used
complementary medicine they were also asked about how they received help in
this area. Parents were asked to rate helpfulness of professionals and parental
satisfaction ratings were also obtained.
Methods: A questionnaire was sent to 250 parents on the Challenging Behavior
Foundations mailing list. The foundation provides information and support to
parents and caregivers of intellectually disabled persons with challenging
behavior. Eighty seven questionnaires were returned and 66 were used in the
study. Children in the study were diagnosed with an intellectual disability and
or autism spectrum disorder. Topics on the questionnaire were as follows:
background and demographic information, child's disabilities and behavior,
nature and perceived helpfulness of professional advice, helpfulness of respite
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care and overall satisfaction ratings.
Results: The average age of children in the study was 12.3 years with a range of
3-19 years. Seventy percent were male and 30% were female, 58% had autism
spectrum disorder and 41% had a severe learning disability. In addition to the
above diagnoses 29 % also had epilepsy, 17% had a physical disability, 4% had a
hearing impairment and 3% had vision impairment. All children were rated as
displaying challenging behaviors such as aggression (95%) and it was a serious
problem for 45% of the children. Families (53%) reported that psychotropic
medication was used to help manage challenging behaviors, psychological
advice/treatment had been provided to 71% of respondents at an average range
of 8 years of age. Ninety one treatments were identified and 24% were rated as
helpful. Communication advice and treatment had been given to 58% of the
families at an average age of 6 years for the child, there were 59 treatments and
49% were rated helpful. Twenty six percent of families reported receiving other
advice and treatment (parent training, equipment and adaptations) to help
manage challenging behavior with 9% reporting this was helpful to them. There
were 7 common themes found through at least 5 respondents in the overall
satisfaction and additional comments area of the questionnaire and they were:
experience of receiving insufficient help and support, importance of insufficient
119
respite provision, perception that professional staff and or services lacked
understanding of challenging behavior, interactions with services were a
constant battle, family strain, having to find out everything for themselves and
experience that the only useful support came from family members, friends or
other parents.
Critique: Strengths: Findings of this study suggest that parents of disabled
children with serious challenging behavior are often not receiving helpful
support/advice or treatment, there are concerns raised about the extent of
evidenced based research for treatments being used and there are concerns
raised about equality of access to help. The fact that this study demonstrated
these findings made it strong in the way that it can prove the need for services in
this diagnostic area. Limitations: A small sample in foreign country was utilized
for the study and findings may or may not be the same in our country or my
geographical area. The parental report in this study reflects on families whole life
experience with their child u p to the last 20 years and may not represent current
experience. Parental accounts may not represent actual advice/treatment and
support provided and it was a convenience sample.
Relevance to Project: This study has provided me with information regarding
how I can work with families that may have a child with a disability and
120
challenging behaviors. I learned that there are specific desires of these families to
receive help and maybe I can point them in directions to receive that help by
providing contacts in the area where they live as well as teach them how to
advocate for their needs. The limitations impact my project in that the study was
not done in the United States so the findings may not be able to be replicated.
Nonetheless even with this limitation, the awareness I now have will only help to
support me in my quest to provide families with support and advocacy
experiences.
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Annotation 10
Pain, H. (1999). Coping with a child with disabilities from the parents'
perspective: the function of information. Child: Care, Health and Development, 25, 4,
299-312.
Study Focus: The purpose of this study was to gain a better understanding of
the role information plays in the coping process for parents of disabled children.
Information is a vital component in understanding the practical implications of
the disability and facilitating adjustment to it.
Methods: Fifteen semi structured interviews (done in the home lasting 45
minutes) were conducted with 20 parents (n=5 with both parents; n=10 with
mother only) of disabled children between the ages of 4 and 8 years, who had a
range of intellectual and physical disabilities. The interviews were meant to
explore what information they (the parents) had received about their child's
disabilities, from whom and whether they had found it useful. Information needs
were also explored. Interviews were audio taped and transcribed and then coded
according to whether the information was received or was an unmet need with
sub codes for the received information to identify its source and medium.
Results: Parents reported personal communication was preferred to any other
mode of communication and that written word was valued as a back up to what
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was said rather than a primary source of information. The use of a home to
school communication book was also deemed helpful as were books or
newsletters and written records of assessments or reviews of their child.
Professionals were deemed to be the most frequently utilized source of
information about the child's condition, management of it and services that were
available and that other parents were also a source of information for families.
Parents also stated that voluntary organizations were used and that having
access to these organizations helped parents to plan and feel more in control.
Three themes were found for the reasons why parents sought out information
regarding their child and they were: to enhance management of their child (for
things such as feeding and/or behavior management), to help them cope
emotionally and to be able to access benefits and services. The majority of
parents who joined a specialty voluntary organization indicated that knowing
others in similar situations was helpful, as was an understanding of their child's
diagnosis to help explain it to others such as family. Parents all expressed a need
to know what services, benefits and facilities were available to enable them to
choose what was most appropriate for their child.
Critique: Strengths: Strengths in the findings of this study suggest that the
ability of professionals to provide information in a way that is easy to
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understand is positive and helpful/important for parents. For maximum impact a
professional should select leaflets of information and direct parents to what to
read regarding their child's needs and what is available (Pain, 1999). Availability
of support groups or key workers for families was also determined to be needed
by families and to me was strength in the findings. Limitations: Data was
possibly biased towards things that were important to interviewees rather than it
being comprehensive to cover all information sought and the findings are not
directly able to be generalized to all parents of disabled children. This study
sample was small and it was not conducted in the US. The study should be
replicated in the US to determine what the needs are of families in this country
and then possibly replicating the study in New Hampshire.
Relevance to Project: It was found in this study that parents wanted information
regarding: "bringing up their child, they wanted help to identify sources of
information, and usefulness of the sources of information to their life and needs.
Parents of disabled children face the difficulty of balancing the normal task of
parenting with treatment programs, additional physical duties and the need to
adjust emotionally to their child's difference from their expectation" (Pain, 1999).
Although this study was completed in another country, the results/findings are
very important for me to understand. I need to be aware that when providing
124
parent education classes I need to prepare my information for parents with the
understanding in mind that parents need to be directed to the information that
would best suit their needs.
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Annotation 11
Blackburn, C , & Read, J. (2005). Using the internet? The experiences of parents of
disabled children. Child: Care, Health and Development, 31, 5,507-515
Study Focus: The purpose of this study was to establish baseline data in the
United Kingdom on adult caregiver's access to and use of the internet and to
gather information about their perspectives and opinions about their experience.
This study also examined the use of the internet by parents of children with
disabilities. Methods: A national cross sectional postal survey of 3014 adult
caregivers, of which 788 cared for disabled children ages 0-17, was completed.
The questionnaire collected data from 788 parents on the use, experience and
views of the internet, their socio-demographic and economic characteristics as
well as the circumstances around caring for their child. Survey data were
analyzed using frequency distributions and cross tabulations to describe patterns
and assess differences between groups.
Results: The majority of respondents were women (93%), over half (56%) were
not in paid employment and 75% lived in owner occupied accommodations. The
majority (89%) of the children were of school age. A high proportion of
respondents reported having home access to a personal computer (83%), while
28% used an internet phone and 13% used a web-enabled television. Seventy five
126
percent reported that they had previously experience using the internet. Parents
reported using the internet for a variety of purposes related to both the caring of
their child and other aspects of their lives. Parents (72%) used the internet
directly for obtaining information related to their role as parents of disabled
children, which included information on benefits, services and medical
conditions. Parents (36%) also used the internet to make contact with
organizations relevant to their child or parenting responsibilities and other uses
were to obtain equipment for their child, shopping, work, education and to find
out information on leisure activities for their child. They also were asked to share
what the barriers or problems they ran into when using the internet were, if there
were technical issues and the time it took to find information they were seeking.
Critique: Strengths: This study draws attention to the fact that the internet
assists parents to find services and information for their children with
disabilities. The internet can decrease social isolation, decrease barriers to leisure
activities and help parents accomplish everyday tasks like shopping. This
research study highlighted the fact that the internet was used in a positive
manner to benefit the families and to help circumvent barriers to activities that
were more difficult to do with their children due to the severity of their needs.
Limitations: There were limitations to the study such as the cost of the internet,
127
the technical difficulties surrounding its use and the needs of the families were
very complex, so information may not be available or easily accessible as of yet.
The cost of the internet is a huge barrier to consistent and effective use to meet
essential needs of families. The study suggests that the government in the United
Kingdom, the local authorities and other public organizations need to reduce the
barriers or remove them so that the internet can be useable to those that may
need it the most. The other limitation was that there are and always will be a
portion of the population that does not use the internet so there will always need
to be printed information and other forms to ensure that those caregivers are not
excluded. Another limitation of this study is that it was performed in the UK and
not the United States, where technology may be at a different point and that
there are already programs in place for families of disabled children to obtain the
internet at reduced cost.
Relevance to Project: The strengths and limitations of this study highlight the
fact that the use of the internet for my project could be both a blessing and a
curse. A blessing in the fact, that I could potentially reach those families that are
unable to come out for a parent education class, but I would still need to hold
face to face classes or put them on video for parents to watch that don't have
access to the internet. My ideas for having a website about my work will also
128
have to be printed for those that do not have access and will need to be provided
in places that people generally go such as a doctor's office or school based
program. Research has offered "consistent evidence that the provision of crucial
information to parents of disabled children at a time when they need it and in a
form that they can use is an intractable problem" (Blackburn & Read, 2005). It is
important to develop new and effective approaches to information presentation,
distribution and delivery.
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Annotation 12
Olson, J., & Esdaile, S. (2000). Mothering young children with disabilities in a
challenging urban environment. The American Journal of Occupational Therapy, 54,
307-314.
Study Focus: The purpose of this qualitative study was to examine mothering
occupations as two mothers living in a challenging urban environment have
experienced them in relation to their children with disabilities.
Methods: Two single urban African American mothers in their mid 20's were
interviewed with a semi-structured protocol. The sessions were audio-taped;
data was transcribed and were analyzed with a phenomenological method.
Mothering was defined as a "variable relationship constructed within different
historical and cultural contexts in which one person usually female nurtures and
cares for another" (Olson & Esdaile, 2000). The two mothers in this study were
26 and 27 respectively. One had a child who was typically developing until
suffering shaken baby syndrome with resultant cerebral palsy, blindness and
severe cognitive and language delays and the second mother had a child with a
seizure disorder of unknown origin who was severely multiply handicapped and
died at one year of age.
130
Results: An essential overarching theme was found of "What I got to do" with
subthemes of (1) mothering as caring, with separate components of mothering as
nurturing and mothering as advocacy and (2) the impact of support systems or
lack thereof on the occupations of mothering (Olson & Esdaile, 2000). The two
mothers felt defined by their children and that mothering was what they had to
do such as diapering, bathing and feeding as well as sharing family activities and
normalizing the experience of caring for a child with severe disabilities. The
mothers performed different activities in the name of caring such as routine
physical care and in addition, one mother had to acquire skills to handle and care
for a feeding pump for her child, which was helping her maternal occupation of
feeding her child. The other mother had to give her child seizure medication at
carefully prescribed times as well as other life preserving activities to keep her
son healthy. Neither of these mothers felt angered or burdened by these
additional roles it was what they had to do. Both mothers found and organized
agency services to meet their children's educational needs and they acted as
advocates and case managers. They attended meetings, made phone calls, wrote
to agencies and went to university training sessions to help their children. Both
mothers did not receive help to do this from outside professional case managers
and both of them identified these activities as components of caring for their
131
children. They were also responsible for scheduling appointments, maintaining
medication schedules and planning activities/transportation and personal safety
as well as obtaining, maintaining and using a variety of equipment and working
with their child's therapists. Both mothers felt that support for their occupations
as mothers was deficient. The authors (1999) feel that mothering is deserving of
the attention of Occupational Therapy practitioners, because it contributes to the
mental health that is essential to child development and that they wanted the
occupation of mothering to be treated by occupational therapists especially when
working with parents of young children with disabilities.
Critique: Strengths: The study identified the occupations of the mothers as
caring for their child's everyday health needs and then finding the time and
having the ability to perform activities that allowed their children to go to
doctors and therapy appointments as well as having family members participate
in leisure activities. Limitations: Only two participants from the same
geographical location (with different contextual factors than those in upper-class
areas) were involved in the study and the themes they identified might not be
the same for other mothers in different areas of the United States.
Relevance to Project: "Mothering is a pivotal occupation for many women. In
Occupational Therapy practice with children who have cerebral palsy and other
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developmental disabilities the occupation of mothering may go unseen as
therapeutic efforts rest on working with the child first then the family" (Olson &
Esdaile, 2000).
This study demonstrated to me that it is important to look at what families have
to do daily and what their needs may be, when providing programming to them
as a therapist. It also helped me to understand the role that mothers have and
how that can impact their ability to come to education classes that I would like to
provide. It has given me more thoughts as to how to arrange classes and where
to hold them when thinking about the context of daily life for families of children
with special needs. The limitations have encouraged me to perform a small needs
assessment via mailing about where to hold classes, what classes do the families
want to come to, what information do they need and in what form would they
best be attended (in homes, center based or via video or internet).
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Annotation 13
Webb, C. (2005). Parents' perspectives on coping with Duchenne muscular
dystrophy. Child: Care, Health and Development, 31,4, 385-396.
Study Focus: The author has a grown son with Duchenne Muscular Dystrophy
(DMD) and has personally experienced a lack of available information for
parents about coping with the disease; therefore she developed the study to
address the lack of information available. DMD is the second most common
genetic disorder in humans and leads to progressive muscle wasting and results
in severe debilitation and eventually death due to respiratory or cardiac failure
in the late teens. The diagnosis of DMD presents parents with many challenges
such as self blame, powerlessness, rejection and parent/child related stress.
Researchers have learned that many different coping mechanisms are used
within families to deal with the disease.
Methods: Study sample was selected from volunteer participants and the final 15
families were selected based on the age of the boys in the study, family
demographics and geographical location. Individualized semi-structured in-
depth interviews were conducted and audio-taped. Actual interview questions
were developed from the statements and responses made by the families as the
interviews progressed, this allowed the researcher to gather additional data to

134
support and corroborate her findings. An independent professional transcribed
the tapes verbatim to allow for data analysis using grounded theory.
Results: From analysis, coping themes used by families emerged such as:
Genetics, Reactions to Diagnosis, Treatment, Equipment and School issues. In
coping with DMD, many parents were frustrated by the initial inability to
convince the doctors there was a problem, although the signs of DMD were
present. Many of the mothers were told that they were being overprotective and
were worrying over nothing. Parents felt that medical and other professionals
needed to appreciate parents' instincts and give credit to their expertise and
concern for their child. Many parents reaction to the diagnosis included "various
stages of the grief process such as denial, anger, fear, guilt, confusion,
powerlessness, disappointment and rejection" (Webb, 2005). It was found that it
was important for medical professionals to be aware of the grief process, to
handle diagnosis with empathy and to provide support to parents until they
develop coping skills necessary to deal with the diagnosis. There is no treatment
to halt the progression of DMD, but it was found that willing parents have
several treatment options available to help slow the progression such as being
proactive in keeping their boys active such as swimming and stretching, the use
of medications and preventative surgery. Parents also rely on the use of special
135
equipment such as ankle foot orthoses, wheelchairs, ramps, lifts, accessible
showers, hospital beds, modified vans for transport and accessible homes. They
also felt that they had the responsibility to see that their children's schools
provided the necessary accommodations so that the children received an
appropriate and accessible education.
Critique: Strengths: Findings of this study reiterate the value of relying on
parents as sources of expert and practical advice. There were implications
suggested for professionals who work with children with DMD and they were:
give credit to parent concerns, be aware of the grief process and work
cooperatively and collaboratively with parents. Limitations: Small study
sample, only one diagnosis utilized, the study only included boys and findings
may not be able to be generalized to other diagnoses.
Relevance to Project: This information presented has given me a great
understanding of what parents want and need from medical professionals to
learn to cope with life altering situations. The findings will guide me when
forming my parent classes and will encourage me to include more time for
parents to share their stories so that they feel heard. Even with the limitations in
this study I was able to learn how to better organize my classes so that parents
can be provided with an outlet to share information.
136
Annotation 14
The Pediatrician's Role in Family Support Programs. (2001). American Academy of
Pediatrics, 107, 1,195-197.
Paper focus: The purpose of this paper was to demonstrate how pediatricians are
able to serve as family advisors and community partners in supporting the
wellbeing of children and families. This paper recommends that "opportunities
be presented to pediatricians to increase their expertise in assessing the strengths
and stressors in families, how to counsel families about strategies and resources
and how to collaborate with others in the community" (p.195). The article also
focuses on the changes in life challenges in America from longer hours that
parents have to spend at work to make ends meet, to being further away from
close family and to children possibly being in a household with only one parent
due to divorce (p.195). These are just a few of the challenges described in the
paper and it is said that pediatricians can play a crucial role in the child and
families well being during stressful times. The paper also suggests that there are
social changes as well as economic inequalities that make it difficult for families
and children. It is difficult especially for those living in poverty stricken areas to
participate in well rounded care and receive the support they need to ensure
proper child development and health.
137
Methods: The article highlights different types of community support programs
that are available to families such as: afterschool programs, school based health
services, employers having benefits such as onsite daycare, flexible hours and
shared jobs and religious venues being places to obtain social services and
support.
Results: An important aspect of this article is that it states that, services should
be provided to all families regardless of economic or ethnic background and that
families seek out services for at least 3 reasons. The 3 reasons are as follows:
"families need or desire certain services; they have encountered difficulties in
using existing services and thirdly that, they want to be part of a group of people
with similar concerns" (p.196). Important principles of Family Support
Programs are highlighted in this article and they are: "that the family is the
primary responsible party for the development and well being of the child, that
families are part of a community and support needs to be provided to them
through links with community resources, that social support for parents of
young children serves to prevent behavioral and developmental problems and
that types of support families need should be determined by individual families"
(p. 196-197). Family support plays a crucial role in promoting the positive
functioning of families and ensuring wellbeing of children. Family support is
138
especially effective with families that have a low income. A few
recommendations are especially supportive of parent support and education
programs as well as pediatrician involvement in supporting parents.
"Pediatricians were encouraged to have open and ongoing relationships with
parents to facilitate discussions, monitor and guide developmental progress and
address concerns. They should continue to participate in continuing education,
should consider needs and resources of families, they should work to develop,
refer and participate in community based family support programs, provide
technical advice on health and safety aspects of services and should actively
work in community to develop plans for programs" (p.196-197).
Critique: Strengths: Strengths of this article were that there were definite
recommendations made to pediatricians that are meant to increase their
participation with families and communities that they serve. Community
support programs were highlighted as well as principles of family support
programs. Limitations: Limitations of this article were that it is not known
where these community support programs will be successful, it is not known
how much money these would cost to run and the biggest limitation is the fact
that pediatricians are very busy and may not be available to be part of family
support programs the way that this article intends.
139
Relevance to Project: This article provided me with an understanding of what
the American Academy of Pediatrics feels should be the role of the Pediatrician
when working with families of children with special needs. It allowed me to
have a greater understanding regarding how I can possibly involve local
pediatricians in programming that I hope to provide through my doctoral
project. The limitations found in this article, could impact my ideas for my
program about involving pediatricians in my education classes as there may not
be enough time in their schedule to become involved in anything outside of their
responsibilities that they currently have.
140
Annotation #15
Care Coordination: Integrating Health and Related Systems of Care for Children
with Special Health Care Needs. (1999). Pediatrics: Official Journal of the American
Academy of Pediatrics, 104, 4, 978-981.
Paper focus: This purpose of this paper was to focus on care coordination which
is, "a process that links children with special health care needs and their families,
to services and resources in a coordinated effort to maximize the potential of the
children and provide them with optimal health care" (p.978). This article was a
policy statement and it reviewed, "the importance of the primary care
pediatrician's role in care coordination in the context of the medical home"
(p.978).
Methods: The article reviewed multiple systems of care, the components and
types of care coordination, the family's role in care coordination and the primary
care pediatrician's role.
Results/Findings: When a child is involved with medical/therapy and
educational professionals in various practices (multiple systems of care), families
and pediatricians often are working with organizations that may have different
belief systems than what the family and pediatrician have. Due to the possibility
of children having more than one specialist provider, there can be difficulty
141
linking systems of health care to provide a coordinated effort. Another issue that
was raised in this paper was of third party payors being involved in most if not
all of the organizations that children might receive care in. Third party payors
such as insurance companies do not always approve of certain treatments, tests
and even at times don't pay for specialty services. An eligibility criterion is also
another issue, as eligibility is usually dependent on the child's diagnosis, family
income and expected benefit of services. Each program that a child may be
involved in may have different eligibility criteria. Families have been known to
experience difficulty obtaining access to services and often need extra assistance
from primary care doctors. In the educational system children with special
needs are at times excluded from services because they do not meet criteria in
certain categories and this is especially difficult since many states do not follow
the same criteria. Findings of parent and medical/therapists roles are that, family
members are able to lead care coordination teams due to their personal
relationship with their child, but in order to be effective as coordinators they
need to understand their child's needs, condition and skills and should be
supported by their family. Pediatricians, nurses and therapists are also able to
lead care coordination teams especially when there is a medically complex child
involved, because they often have access to services that families may not know
142
about. It was found that "positive changes do occur when families and
professionals work together and when they do not work together cost of care can
increase, patient satisfaction decreases and care becomes disorganized and
fragmented" (p.979). There are barriers reported regarding the pediatricians role
as care coordinator within the medical home concept. Barriers are: "a lack of
knowledge about the child's chronic condition, community resources and/or how
to coordinate services, a lack of communication between team members, extra
time and effort required to be a care coordinator; lack of adequate
reimbursement and many people may want to perform the role" (p .979-980).
Critique: Strengths: Specific recommendations are made on how to support the
roles of pediatricians and professionals as well as families in care coordination.
Limitations: It is not known how this program will affect the medical profession
in the form of time needed for it and how the care coordination program will
work in every state or pediatrician office.
Relevance to Project: I can take the recommendations from this paper and
directly apply it in conversations that I want to have with medical professionals
about why it is important to have someone in the care coordination role. When
speaking with families I can educate them on movements made to have medical
professionals more aware of care coordination and can make families aware of
143
programs that are available to educate professionals on this specific matter. One
of the limitations of this study was that often professionals want to know how
much time it will take for them to perform roles and how they will be
reimbursed. I believe a study of this type of service should be done to better
understand what is needed by the pediatrician or medical professional.
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Appendix B: Informational Survey for parents (to be completed in June 2009)
Child(ren)
(gender and age for

each)
Diagnosis
Concerns
Services that are

currently being
received
(OT, PT, SLP,

Nursing, Social
Work etc..)
What services have o Occupational Therapy

been received in the
past? o Physical Therapy
o Speech and Language Therapy
o Early Supports and Services
o Feeding therapy
o Applied Behavior Analysis
o Nutrition services
o Other:
What programs in o Parent Information Center

the state and
community do you o Area Agencies
know about?
o NH Family Voices
145
o Bureau of Special Medical Services
o Early Supports and Services
o Other:
How did you find o Newsletters

out about services
and programs? o Magazines
o Medical provider
o Internet
o Friends
o Family
o Daycares
o Other:
Do you belong to an o Region 1 o Region 5 o Region 8

Area Agency? If so,
which one? o Region 2 o Region 6 o Region 9
o Region 3 o Region 7 o Region 10
o Region 4
If you are not part

of an Area Agency
would you like to
be referred?
How did you

become involved
with your Area
Agency?
146
Who referred you
for Area Agency
Services?
Do you feel your

child's doctor is
aware of state and
local programs that
provide support
and advocacy?
What would you Respite care How to navigate insurance and

like to learn about? healthcare
Parent support programs
Circle programs Legislation related to healthcare and
you are interested Understanding diagnoses or disabilities
in learning about concerns
State programs
Coping Skills
How to speak with medical
How to interact with families and professionals
friends
OTHER:
Contact
information: name,
address and phone
number (if you
would like to
participate)
147
Demographic information to support parent networking: (this will be sent out
with survey)
In order to place families in groups for utmost support the program director
would like to understand your opinion regarding the information below:
When creating groups are there any characteristics of others that you would
most be looking for in a peer support group? Please describe below.
S Similarity in ages of parents and children
S Similarity in household income?
•S Similarity in level of education achieved?
•S Similarity in marital status?
•S Similarity in primary language spoken in the home?
•f Similarity in literacy level?
S Similarity in ethnicity?
S Similarity in cultural views?
Would you be willing to speak with the program director regarding any
concerns?
If you would like to speak with the program director please leave a phone
number and a convenient time to reach you.
148
Appendix C: Data from National Family Voices Program
The following is a summary of topics and data reflected in this document from
31 states across the US that participated in this data report (states were not
i d e n t i f i e d ) (Summary of Data Reported to Family Voices by F2F HICs and Network Members July, 2003
through June, 2004, 2008).
Helping Families and Professionals:
D 64,791 requests for assistance were received from families.
• 37,216 requests for assistance were received from professionals.
• 64% of requests were from families.
• 36% of requests were from professionals.
Providing Information & Assistance to Families and Professionals:
• Information and assistance on Health Care Financing (HCF), which includes
public health care programs, private insurance, and health services covered by
an educational program, was provided more often than any other measured
category of information.
• Information / assistance on HCF were provided during 37,901 requests for
assistance from families and professionals.
D The total # of requests in which Parent to Parent information & support was
provided was 24,748.
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• Community resource information was provided in 14,180 requests for
assistance from parents and/or professionals.
Helping Families and Professionals understand Health Care Financing:
• Within the category of HCF, the information / assistance most frequently
provided was about public HCF programs such as Medicaid, Waivers, SCHIP,
Title V, DD and SSI.
• The number of requests for assistance in which information /assistance was
provided on public HCF increased from 2,011 in Jul- Sept 2003 quarter to 11,441
in the Apr-Jun, 2004 quarter, almost a 500% increase.
Listening to and helping Families resolve problems with Health Care
Financing:
• Families reported problems with a public health care financing program
(Medicaid, Waivers, SCHIP, Title V, SSI, and DD) in 6,388 requests for assistance.
• Many families reported problems with health services covered by an IEP, 504,
or EI program
Providing Information to Many People in a Variety of Ways:
• Distribution of almost 2 million newsletters
• Distribution of about Vi million handouts
• Discussions with an average of 10,839 listserv members
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• Participation in 6,809 meetings attended by over 215,000 family members
and/or professionals
Partnering with Professionals:
D Received 1,295 requests from professionals to review materials.
Helping Families from Underserved Communities
D Reached an average estimate of 45% of families from underserved
communities through all activities
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Appendix D: Class Outline
Class Four: How to communicate with healthcare personnel and insurance
companies: (60-120 minute talk with 30-60 minutes of socialization after class
with refreshments) (outline of handouts for this class will be provided within
appendix E)
I will partner with New Hampshire Family Voices to provide the
following information:
• How to create a personal health notebook/binder of their
child's health and developmental information that allows
easy access to information when it is needed to communicate
with professionals (a notebook will be presented and for
view in the room). We will begin to create binders in the
class)
• How to make concerns known to doctors and therapists,
how to ask questions
• We will provide ideas such as writing down questions prior
to appointments
• How to use a calendar to chart concerns
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• How to deal with wait times for appointments (if this is a
concern)
• How to obtain referrals for professionals you would like to
have on your child's medical team
Document titled MAZE 08 (pdf) will be used in this class and specific sections
will be handed out, that will address how to make concerns known, how to ask
questions. Pages three and four and pages fifty eight through eighty four
specifically will be used as information that will be presented and handed out in
a packet. From pg one hundred and two on will be available for participants to
take with them if they so choose to. These documents from MAZE 08 are
attached in appendix E.
Document titled Medical Appointment will be utilized and handed out
Document titled Medical emergencies will be utilized and handed out
Document titled NH Medical Home will be utilized and handed out
Document titled Prescription Tips will be utilized and handed out
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Appendix E: Class Four Resources:
For Getting Answers to Your Questions (page 3, MAZE 08)
Families/parents/consumers need to find easy ways to get information about
available resources and services to meet their needs. Here are some tips to help
"If s about not giving up and about asking a lot of questions. Persistence is the
word I use. Pushy, sometimes yes. But persistent is really it because you don't
have to be pushy, you just have to not give up."
• Keep calling and keep asking questions.
• Ask for names and phone numbers of other people to contact.
D If the recorded voice on the phone is confusing, often you can just stay
on the line. Then you will be connected with a person.
• Written request or email may result in a prompt response.
"Get organized. Write down when you called, who you talked with, and what
the conversation was about. You're going to need to go back to that at some
point - you're not going to be able to remember it all."
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Keep track of:
• Who you talked with, the phone number, and the date of the call.
D The name of the organization and the information you were given.
D What you and what they agreed to do - and by what date.
• Their ideas about other people to contact.
"Families need to educate themselves about all aspects of their child's special
needs."
• Get information from your providers, the library, other parents, or the
internet.
• Make sure the information you receive is correct and u p to date. Ask your
doctor or health provider about the information you find.
Keep Trying - Keep Notes - Educate Yourself
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Information to Have at Your Finger Tips (page 4, MAZE 08) for class four
Many agencies and service providers need basic information when looking at
what your family may qualify for. Having this information written out ahead of
time -can save time and energy.
Legal Name: Date of Birth:
Address: Town: Zip:
Telephone numbers: Home: Work:
Cell:
E-mail address:
Child's/family members SS#:
Primary Care Doctor:
Address:
Tel:
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Health Insurance Information
Subscriber Name:
Policy #:
Child/Family Members Diagnosis:
Family Information
Number of members in household:
Income (annual gross):
Service Providers that know your family member
Name:
Tel:
Name:
Tel:
Name:
Tel:
These sheets will be provided to all families to help them be able to tell doctors and
therapists important information as well as fill out applications for different programs
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Resources for Class Four
Community Health Programs
Many NH families benefit from a variety of preventive health care and education
services throughout the state. Many of these services are offered either directly
through the NH Department of Health and Human Services, Division of Public
Health Services or through a contract with local health agencies. Emphasis is
placed on providing services to people who do not have access to medical
services.
Primary Care Centers
The Community Health Agencies are staffed with family physicians, nurse
practitioners, social service providers and other health professionals. These
centers provide the full range of primary care for all members of the family. The
Community Health Centers accept most forms of health insurance and offer a
sliding fee scale based on income for uninsured clients. No one is turned away
due to inability to pay.
The Child Health Program
Nine local community health agencies and ten community health centers
administer the Child Health Program (CHP). The CHP allows these health care
providers to offer comprehensive, preventive direct health care to low-income
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children through clinic and home visits. Services include physical exams, health
screenings, immunizations, anticipatory guidance, assistance with health care
enrollment, referrals, case management, care coordination, and education and
counseling relative to the child and family.
Community Health Agencies
PORTSMOUTH AREA
Families First Health Center
Portsmouth site: (603) 422-8208
ROCHESTER & DOVER AREA
Avis Goodwin Community Health Center
Rochester site: (603) 749-2346
Dover site: (603) 749-2346
NEWMARKET, RAYMOND AND NASHUA AREA
Lamprey Health Care
Newmarket site: (603) 895-3351
Raymond site: (603) 895-3351
Nashua site: (603) 883-1626
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MANCHESTER AREA
Manchester Community Health Care
Manchester site: (603) 626-9500 x 9523
CONCORD AND HILLSBORO AREA
Capital Region Family Health Center
Concord site: (603) 228-7200
Hillsboro site: (603) 464-3434
CONWAY AND WOLFEBORO AREA
White Mt. Community Health Center
Conway site: (603) 447-8900
Community Health
Women, Infants & Children Nutrition Services (WIC)
NH DHHS Office of Community & Public Health
Women, Infants & Children Nutrition Services
29 Hazen Drive
Concord, NH 03301
Telephone: (800) 942-4321 or (603) 271-4546 TDD Number - (800) 735-2964
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Web: www.dhhs.state.nh.us/DHHS/WIC/default.htm
WIC Nutrition Services administers health and nutrition programs. The WIC
Program has locations statewide. There are income guidelines.
Woman, Infants and Children (WIC): provides free food and nutritional
information to pregnant woman, new mothers, infants and children under the
age of 5 years.
Commodity Supplemental Food Program (CSFP):
a nutrition education program that provides free food and nutrition information
to promote good health for children up to age 5 years and postpartum women
for a year after the birth of a child as well as seniors age 60 and over.
Farmers' Market Nutrition Program (FMNP):
provides coupons to WIC & CSFP participants to purchase fresh fruits,
vegetables and herbs at participating Farmers' Markets throughout NH.
Breastfeeding Promotion and Support:
A public awareness effort to increase awareness of the benefits of breastfeeding
for both a mother and an infant as well as to provide resources and support to
women breastfeeding. Breastfeeding Promo-Support - (800) 852-3310 Ext. 3858 or
(603) 271-3858
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WARREN, LITTLETON, WOODSVILLE AND WHITEFIELD AREA
Mt. Moosilaukee Health Services
Warren site: (603) 764-5704
Littleton site: (603) 444-2464
Woodsville site: (603) 747-3990
Whitefield site: (603) 837- 2333
Franconia site: (603) 825-7078
FRANKLIN AREA
Health First Family Care Center
Franklin site: (603) 934-1464
Laconia site: (603) 366-1070
NEWPORT AREA
Valley Regional Health Care/Partners In Health
Newport site: (603) 543-6960
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BERLIN AREA
Coos County Family Health Center
Berlin site: (603) 752-2040
Community Health
Childhood Lead Poisoning Prevention Program
NHDHHS Division of Public Health Services
29 Hazen Drive
Concord, N H 03301
Telephone: (800) 852-3345 X 4507 or (603) 271-4507
Web: www.dhhs.state.nh.us/DHHS/CLPPP/default.htm
The program is a resource for N H residents who need help addressing the
hazards of lead in their children's environment. The CLPPP conducts statewide
surveillance; provides medical case management and home inspections for lead-
poisoned children; and provides information and referral for reduction and
abatement of lead hazards. Professional program staff provides free phone
consultation and referral to lead screening providers, as well as free lead
poisoning prevention information kits.
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Immunization Program
NHDHHS Division of Public Health Services
29 Hazen Drive
Concord, N H 03301
Telephone: (800) 852-3345 X 4482 or (603) 271-4482
Web: www.dhhs.state.nh.us/DHHS/IMMUNIZATION/default.htm
The program promotes immunization initiatives for children and adults to assure
the opportunity for a lifetime of protection from vaccine preventable diseases.
Information about NH Statutes and laws pertaining to immunizations required
for school and day care entry.
Children and Youth with Special Health Care Needs
Special Medical Services
NHDHHS Division of Developmental Disabilities
129 Pleasant St,
Concord, NH 03301
Telephone: (800) 852-3345 Ext. 4488 or (603) 271-4488
Web: www.dhhs.state.nh.us/DHHS/SPECIALMEDSRVCS/default.htm
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Special Medical Services provides medical care coordination and financial
services to children with physical, developmental disabilities, chronic health
conditions and other special health care needs. Financial Assistance for health
care and related services to families are also available if the child is under the age
of 21 years, has an eligible medical condition and the family is financially
eligible.
Healthcare Insurance Resources
NH Healthy Kids
25 Hall Street, Suite 302
Concord, N H 03301
Telephone: 1-877-464-2447
Web: www.nhhealthykids.org
Healthy Kids Medical Insurance
NH Healthy Kids provides free or low-cost health insurance to uninsured New
Hampshire children. Healthy Kids (HK) premiums are based on family size and
income. Income includes any income earned from working or self-employment
and unearned income such as child support, alimony, Social Security Disability
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(SSDI), other Social Security payments, unemployment, Veteran's, or Worker's
Compensation benefits, or any income received on a regular basis. Your family's
income may be adjusted to reflect certain additional expenses such as Child or
Adult Day Care so you can work, Court-Ordered Child Spousal Support or
Wage Garnishment.
The non-financial eligibility requirements are:
• Age: Your child must be under the age of 19.
• Residency: Your child must be a N H resident.
• Citizenship: Your child must be a US citizen or an eligible qualified non-
citizen.
• Insurance Status: Your child may be eligible for Healthy-Kids Gold regardless
of insurance status. However, if your family's monthly income places your child
in the Healthy-Kids Silver program, your child must have no other health
insurance coverage or must not have had coverage within the last 6 months
(unless certain good cause reasons for termination of health coverage, such as job
loss, exist). Social Security Number: Your child does not have to provide an SSN
if your family's monthly income places your child in the Healthy-Kids Silver
program. However, if your child is eligible for Healthy-Kids Gold, your child's
SSN must be provided.
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Healthy Kids Silver
Healthy Kids Silver coverage is provided through a managed care plan from
Anthem BCBS. The Anthem network of health care providers is available to your
child. Dental services are available through the Northeast Delta Dental network
of dentists. Special Eligibility: Your child must be uninsured for six consecutive
months prior to enrollment. This requirement may be waived for good cause. Job
loss or cases of domestic violence are examples of good cause reasons. Cost:
There is a monthly premium cost. Cost is based on income and family size. A co-
payment (usually $10) is required for some services. Co-payments are due at the
time of the visit. Preventive cares, including well-child and dental checkups are
fully covered. Premium costs have a family maximum for the number of children
enrolled. The total of premiums and co-payments cannot exceed 5% of your
family income in a calendar year.
Healthy Kids Buy-In
The Buy-In program does not receive any state or federal funding. Families who
are not eligible for State sponsored coverage through Healthy Kids may be able
to buy into the Silver program. Co-payments and benefits are the same,
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excluding maternity services, at a monthly cost per child. There are income
guidelines for this program.
Eligibility for the Buy-In program is available to:
• Families with children ages 1-19 with higher incomes
• Non-citizen children who are legal residents but otherwise not eligible
• Children over the age of 19 who are still enrolled in high school
• Children who have been uninsured for three consecutive months prior to
enrollment
Healthy Kids Gold is the NH Medicaid program for children up to age 19 with
income no higher than 185% of the federal poverty income limits or, if the child
is younger than 1 year and has no other health insurance coverage, income can
be no higher than 300% of the federal poverty income limits, (see FPL) No
premium.
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NH Medicaid Medical Assistance Eligibility
These are "doorways of eligibility" for qualifying for Health Kids Gold Medicaid
services, or Medicaid for adults (over the age of 19). These require a medical
eligibility determination in addition to a financial eligibility determination.
• Home Care for Children with Severe Disabilities (HC-CSD): commonly
referred to as Katie Beckett: requires children to meet SSI eligibility criteria for
children and an institutional (nursing facility) level of care. Only considers the
child's income and resources for financial eligibility. The coverage is the same as
Healthy Kids Gold.
H Aid to the Needy Blind (ANB): a category of eligibility that requires an
individual (child or adult) to be diagnosed as legally blind. The visual acuity in
the better eye can be no greater than 20/200.
• Aid to the Permanently and Totally Disabled (APTD): an adult service
category that requires individuals between ages 18 to 64 to meet the Social
Security impairment severity requirements and to be unable to perform
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substantial gainful activity for 48 consecutive months as a result of the
impairment.
NH HB 790 - Dependent Care Expansion
In July, 2007 the N H Legislature passed the "Dependent Care Expansion" that
required certain insurance plans to expand the definition of dependent to include
a subscriber's child who:
D is less than 26 years of age,
D is unmarried
• is a resident of NH, or is enrolled at a public or private institution of higher
education, and
• is not provided coverage as a named subscriber under any other group or
individual health plan or entitled to benefits under certain governmental
programs.
This gives families the opportunity to keep their child on their health insurance
until their 26th birthday. For more information call the N H Insurance
Department (below).
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The New Hampshire Insurance Department
Consumer Division
21 Fruit St. Suite 14
Concord, N H 03301
Telephone: (800) 852-3416 or (603) 271-2261
Web: www.nh,gov/insurance
Information about companies offering Health Insurance in NH; Individual
Health Plans; Medical Savings Accounts (MSA); IRS information on MS As; Short
Term Medical Plans; Health Maintenance Organizations in New Hampshire;
Long-Term Care Insurance; Small Group Health Plans (1-50) as well as legal
information can be accessed through the N H Insurance Department.
Minority Health Resources
NH DHHS Minority Health Office
129 Pleasant Street, Concord, NH 03301
Telephone: (800) 852-3345 x3986 or (603) 271-3986 / TDD Number: (800) 735-2964
Web: www.dhhs.state.nh.us/DHHS/MHO/default.htm
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Eligibility for services provided by DHHS Minority Health Office is based upon
the need of individuals to resolve issues of access to DHHS services.
NH Minority Health Coalition
25 Lowell Street, 3rd Floor
P.O. Box 3992
Manchester, N H 03105
Telephone: (866) 460-9933 or (603) 627-7703
Web: www.nhhealthequity.org
The Minority Health Coalition's mission is to identify populations in the state
with barriers to accessing appropriate healthcare, to advocate for adequate and
appropriate services and to empower these populations to be active participants
in their own health care. Services include educational programs, home visiting,
and medical interpretation.
International Institute of New Hampshire (IINH)
315 Pine St.
Telephone: (603) 647-1500
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Web: www.iiboston.org/imh.htm
Offers comprehensive resettlement services to newcomers in New Hampshire,
and provides the resources, guidance, and educational opportunities that enable
new Americans. All IINH services are offered free of charge, except certain legal
and citizenship services, which are provided at nominal fees.
Services currently offered include:
• Refugee Resettlement • English-as-a-Second-Language • Health Services •
Employment & Training
• Social Services • Immigration Legal Aid
NH Refugee Program
Office of Energy and Planning
57 Regional Drive, Suite 3
Concord, N H 03301-8519
Telephone: (603) 271-2155
Web: www.nh.gov/oep/programs/refugee/index.htm
The New Hampshire Refugee Program at the Office of Energy and Planning
(OEP) provides federally funded services to refugees resettled in NH. The major
goal of this program is to assist refugees in achieving economic self-sufficiency
and social adjustment.
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Latin American Center
521 Maple Street
Telephone: (603) 669-5661
Latin American Center activities are designed to support, strengthen and
enhance the lives of the Hispanic community.
Programs include:
• Escuelita (a summer enrichment program for inner city children);
D Bilingual assistance in completing forms and applications;
• Spanish interpretation and translation services; English as a Second Language
(ESL) classes;
D Parenting classes;
D Mentoring and positive role modeling.
ALPHA Youth Services provides middle and high school youth with academic
tutoring, resiliency training, computer skills, counseling life skills training, and
recreational activities in a structured, supportive setting.
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Translators / Interpreters
New Hampshire Department of Education
English for Speakers of Other Languages (ESOL) Program
New Hampshire Department of Education
101 Pleasant Street
Concord, NH 03301
Telephone: (603) 271-3196 or (603) 271-3887
Web:
http://www.ed.state.nh.us/education/doe/organization/instruction/ESOL/transdir
ectory.htm
On the Department of Education's web site is an alphabetical listing of
translators / interpreters by name as well as an alphabetical listing of
translators/interpreters by language.
The New Hampshire Language Bank
Lutheran Social Services of Northern New England
261 Sheep Davis Road, Suite A-l,
Concord, NH 03301.
Telephone: (603) 224-8111 or Cell phone - (603) 491-4255
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Fax: (603) 224-5473
Web: www.lcsnne.org/languagebank.html
If an interpreter is needed, call and an Interpreter Request Form will be faxed to
you. Fax complete form, back a minimum of 48 hours prior to appointment. If
less than 48 hours, fax form and call for confirmation. The fee is $45 per hour
with a 2-hour minimum.
Community Health Resources
New Hampshire Family Voices
129 Pleasant Street
Concord, N H 03301
Telephone: (800) 852-3345 X4525 or (603) 271-4525
Web: www.nhfv.org
N H Family Voices is a Family-to-Family Health Information and Education
Center. We are parents having children and adults with special health,
developmental, physical, or behavioral needs. We assist families with:
• Information and resources including information on diagnosis and specific
health conditions
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D Technical assistance with health care insurance and healthcare financing
• Health in educational settings
D Workshops and presentations
• Lending library of books, videos, and audio tapes with a specialty in children's
books on specific conditions and disabilities, sibling relationships, behavior and
social issues
• Free newsletter "Pass It On"
Partners In Health
The Hood Center for Children and Families
One Medical Center Drive
Lebanon, N H 03756
Telephone: (603) 653-1483
Web: www.nhpih.dartmouth.edu
PIH is a community-based program designed to address the needs of families of
children with chronic health conditions in NH. They work with schools, medical
providers, churches, social services, and other community institutions to create a
setting that will enhance the quality of life of families. They serve families with
children from birth to age 21 with a chronic health condition: certified by a
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physician, expected to last six months or more, and having a significant impact
on daily life.
Below are the community based contacts and the towns they serve.
Region and Towns Served by Partners In Health
REGION 1
Berlin, Carroll, Clarksville, Colebrook, Columbia, Dalton, Dixville, Dummer,
Errol, Gorham, Jefferson, Lancaster, Milan, Northumberland, Pittsburg,
Randolph, Shelburne, Stark, Stewartstown, Stratford, Wentworth, Whitefield.
Family Resource Center
Child and Family Services
123 Main Street
Gorham, N H 03581
Telephone: (603) 466-9027
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Region and Towns Served Partners In Health
REGION 2
Acworth, Charlestown, Claremont, Cornish, Croydon, Goshen, Grantham,
Langdon, Lempster,
Newport, Plainfield, Springfield, Sunapee, Unity, Washington.
Pathways of River Valley
654 Main St.
Claremont, NH 03743
Telephone: (603) 542-8706
Web: www.pathwaysnh.org
REGION 3
Alexandria, Alton, Ashland, Barnstead, Belmont, Bridgewater, Bristol, Campton,
Center Harbor, Ellsworth, Gilford, Gilmanton, Groton, Hebron, Holderness,
Laconia, Meredith, New Hampton, Plymouth, Rumney, Sanbornton, Thornton,
Tilton, Wentworth.
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Community Health and Hospice
780 N. Main St.
Laconia, NH 03246
Telephone: (603) 524-8444 X344
Web: www.chhnh.org
REGION 4
Allenstown, Andover, Boscawen, Bow, Bradford, Canterbury, Chichester,
Concord, Danbury, Deering, Dunbarton, Epsom, Franklin, Henniker, Hill,
Hillsboro, Hopkinton, Loudon, Newbury, New London, Northfield, Pembroke,
Pittsfield, Salisbury, Sutton, Warner, Weare, Webster, Wilmot, Windsor.
Community Bridges
525 Clinton St.
Bow, NH 03304
Telephone: (603) 226-3212
Web: www.communitybridgesnh.org
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REGION 5
Alstead, Antrim, Bennington, Chesterfield, Dublin, Fitzwilliam, Francestown,
Gilsum, Greenfield, Greenville, Hancock, Harrisville, Hinsdale, Jaffrey, Keene,
Lyndeborough, Marlborough, Marlow, Nelson, New Ipswich, Peterborough,
Richmond, Rindge, Roxbury, Sharon, Stoddard, Sullivan, Surry, Swanzey,
Temple, Troy, Walpole, Westmoreland, Winchester.
Monadnock Developmental Services
121 Railroad Avenue
Keene, N H 03431
Telephone: (603) 352-1304
Web: www.mds-nh.org/
REGION 6
Amherst, Brookline, Hollis, Hudson, Litchfield, Mason, Merrimack, Milford,
Mont Vernon, Nashua, Wilton.
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Gateways Community Services Inc.
144 Canal Street
Nashua, NH 03064
Telephone: (603) 459-2744
Web: www.region6.com
REGION 7
Auburn, Bedford, Candia, Goffstown, Hooksett, Londonderry, Manchester, New
Boston
VNA of Manchester and Southern NH
33 South Commercial St. Suite 401
Manchester, NH 03101
Telephone: (603) 622-3781
Web: www.manchestervna.org/
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REGION 8
Brentwood, Deerfield, East Kingston, Epping, Exeter, Fremont, Greenland,
Hampton, Hampton Falls, Kensington, Kingston, New Castle, Newfields,
Newington, Newmarket, North Hampton, Northwood, Nottingham,
Portsmouth, Raymond, Rye, Seabrook, South Hampton, Stratham
Families First Health Center
100 Campus Drive Suite 12
Portsmouth, NH 03801
Telephone: (603) 422-8208 X 146
Web: www.familiesfirstseacoast.org/
REGION 9
Barrington, Dover, Durham, Farmington, Lee, Madbury, Middleton, Milton,
New Durham, Rochester, Rollinsford, Somersworth, Strafford
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Community Partners
Forum Court, 113 Crosby Rd. #1
Dover, NH 03820
Telephone: (603) 749-4015 X 209
Web: www.dssc9.org/
REGION 10
Atkinson, Chester, Danville, Derry, Hampstead, Newton, Pelham, Plaistow,
Salem, Sandown, Windham
Gateways Community Services, Inc.
144 Canal Street
Nashua, NH 03064
Telephone: (603) 459-2763
Web: www.region6.com
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REGION 11
Albany, Bartlett, Brookfield, Chatham, Conway, Eaton, Effingham, Freedom,
Harf s Location, Jackson, Madison, Moultonboro, Ossipee, Sandwich, Tamworth,
Tuftonboro, Wakefield, Wolfeboro
White Mountain Community Health Center
298 White Mountain Highway
PO Box 2800
Conway, NN 03818
Telephone: (603) 447-4240
REGION 12
Canaan, Dorchester, Enfield, Grafton, Hanover, Lebanon, Lyme, Orange, Orford
The Hood Center for Children and Families
One Medical Center Drive
Lebanon, NH 03756
Telephone: (603) 653-1483
Web: http://hoodcenter.dartmouth.edu/
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Council for Children & Adolescents with Chronic Health Conditions
21 South Fruit St. Ste. 22
Concord, N H 03301
Telephone: (603) 225-6400
Web: www.ccachc.org
The Council for Children and Adolescents with Chronic Health Conditions was
established to analyze the barriers for families of children and adolescents with
chronic health conditions in obtaining appropriate and effective community and
family-based services and support. The Council works with state and local
agencies to improve the capacities of communities to respond to needs of
children and adolescents with chronic health conditions and provide support to
their families.
Chronic Conditions Information Network (CCIN)
PO Box 3,
Cavendish, VT 05142
Telephone: (802) 226-7807
Web: www.cc-info.net
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CCIN of Vermont and New Hampshire, is an independent, non profit
organization, providing a free electronic network of information and resources
for those living in New Hampshire and Vermont who are affected by chronic
illness/injury, CCIN has developed a comprehensive website to address the
multiple problems and issues that can occur.
REGION 13
Bath, Benton, Bethlehem, Easton, Franconia, Haverhill, Landaff, Lincoln, Lisbon,
Littleton, Livermore, Lyman, Monroe, Piermont, Sugar Hill, Warren, Waterville,
Woodstock.
Ammonoosuc Community Health Services
25 Mount Eustis Road
Littleton, N H 03561
Telephone: (603) 444-5962
Web: www.ACHS@nchin.org
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Dental Clinic - NH Technical Institute
31 College Drive
Concord, N H 03301
Telephone: (603) 271-7160
Sponsor: N H Technical Institute
Web: http://www.nhti.edu/campuscommunity/dentalclinic.htm
Area Served: Concord
Low cost check-ups and general oral prophylaxes. NHTFs dental hygiene
students under supervision of faculty, provide services to the public which
include oral prophylaxes exams, x-rays, and the application of sealants. Clinic
open to all New Hampshire residents at nominal fee of $20 for adults and $15 for
children. Clinic runs Sept-April.
Seacare Health Services
11 Downing Court
Exeter, NH 03833
Telephone: (603) 772 8119
188
Web: www.seacarehealthservices.org
Area Served: Seacoast
SeaCare Health Services helps people, who do not have health insurance and
cannot afford to pay for medical services, get health care. A group of committed
dentists treat SeaCare members for emergency dental services for $20 per visit.
Home Care Association of New Hampshire (HCANH)
8 Green Street, Suite 2
Concord, N H 03301
Telephone: (800) 639-1949 or (603) 225-5597
Web: www.homecarenh.org
Area Served: Statewide
The Home Care Association of New Hampshire (HCANH) represents licensed
agencies that provide in-home health care and supportive services to individuals
living in New Hampshire. The Association promotes the delivery of responsible,
high quality health care in the home by offering education and networking
opportunities for home care professionals, providing leadership on home care
issues, and serving as a home care advocate in the public policy arena.
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Crotched Mountain Children's Specialty Hospital
1 Verney Drive
Greenfield, N H 03047
Telephone: (800) 258-1466 or (603) 347-3311
Web: www.crotchedmountain.org
Crotched Mountain offers a full range of clinical and rehabilitation services for
children and adults with disabilities.
Outpatient Services: Aquatic Therapy, Audiology, Assistive Technology,
Developmental Pediatric Diagnostic Evaluations and follow-up consultation,
Dysphagia and Functional Assessment of Swallowing Disorders, Occupational
Therapy, Physical Therapy, Psychological and Neuropsychological Assessments,
Sensory Integration Therapy, Speech and Language Assessments and Wheelchair
Seating & Mobility Assessments.
Children's Hospital at Dartmouth - CHaD
1 Medical Center Drive
Lebanon, NH
CHaD Information Line. (603) 650-KIDS
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Web: www.dhmc.org
Children's Hospital at Dartmouth offers an array of pediatric sub-specialties,
outreach clinics and in hospital supports and services.
New Hampshire Poison Information Center
If you have a poisoning emergency, call 1-800-222-1222 immediately.
Home Health Care
There are different types of caregivers who provide home health care services to
children with special health care needs. They may be an RN, LPN, LNA
(Licensed Nurse Assistant), or a Personal Care Attendant (PCA).
You, the parent or guardian, should be able to interview and have the final
approval of the home based caregiver for your child. You should decide if your
child or other family members should participate in the interview and in
preparation make a list of questions applicable to the care of your child. Some
suggested questions for the interview might be:
• Where have you worked before?
D What were your duties?
191
• How do you handle people who are angry, stubborn, or fearful?
• Are you able to lift or transfer from a wheelchair to bed?
D Is there anything in the job description that you are uncomfortable doing?
Consider what qualities/skills you require and what you can train a good
candidate to do. Be sure that you have a chance to watch the interactions
between the in-home caregiver and the family member for whom he or she will
be providing care. It is natural to feel nervous and unsure about having someone
you may not know come into your home to provide care or other services for
your child with special health care needs. To ease your fears and to help you get
a good start in your relationship with your child's in-home caregiver, here are
some steps to take before services begin:
• Learn as much as you can about the scope or description of services to be
provided, and about the agency that employs the person who will be your child's
caregiver.
• Be open and honest about your expectations and discuss them with the agency
management. Find out what the agency expects of you.
D Ask about your rights and options in case you are not satisfied with the care or
services your child receives. You may want to ask the agency for a different
caregiver or switch to another agency altogether.
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• Talk with other families who use in-home caregivers and learn from their
experiences.
Home Health Care Providers
Agency
Services Provided (This does not represent all services)
Type of Payment Accepted
Benda HomeCare Solutions
10 Vaughan Mall, Suite 16
Portsmouth, N H 03801
Tel: (877) 628-3772 or (603) 431-0505
Web: www.bendahomecare.com
Home Health Aide, Homemaker, Medical Social Services, Newborn Assessment,
Pediatric High Tech Nursing, Private Duty Nursing
Medicaid Medicare Private Insurer Private Pay
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Nurses PRN, Inc.
PO Box 122,22 Greeley St.
Merrimack, NH 03054
Tel: (800) 642-3686 or (603) 424-9479
Psychiatric Nursing, Pediatric High Tech Nursing, Newborn Assessment,
Intravenous Therapy, Homemaker, Home Health Aide
Medicaid, Medicare, Private Insurer, Private Pay
Connecticut Valley Home Care
958 John Stark Highway
Newport, N H 03773
Tel: (603) 543-6800
Web: www.vrh.org
Pediatric High Tech Nursing, Respite Care, Respiratory Therapy, Psychiatric
Nursing, Private Duty, Newborn Assessment, Intravenous Therapy,
Homemaker, Home Health Aide
Medicaid, Medicare, Private Insurer, Private Pay, Sliding Fee
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Home Health & Hospice Care - Merrimack
80 Continental Boulevard
Merrimack, N H 03054
Tel: (800) 887-5973 or (603) 882-2941
Web: www.hhhc.org
Homemaker, Newborn Assessment, Nursing, Occupational Therapy, Pediatric
High Tech Nursing, Personal Care, Private Duty, Psychiatric Nursing, Respite
Care
Concord Regional Visiting Nurse Association
PO Box 1797, 250 Pleasant Street
Concord, N H 03302
Tel: (800) 924-8620 or (603) 224-4093
Web: www.crvna.org
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Respite Care, Rehab Nursing, Psychiatric Nursing, Private Duty, Pediatric High
Tech Nursing, Newborn Assessment, Homemaker, Home Health Aide
Home Health & Hospice Care - Nashua
22 Prospect Street
Nashua, N H 03060
Tele: (800) 887-5973 or (603) 882-2941
Web: www.hhhc.org
Respite Care, Psychiatric Nursing, Private Duty, Pediatric High Tech Nursing,
Newborn Assessment, Homemaker, Home Health Aide
Home Healthcare, Hospice & Community Services, Inc.
PO Box 564, 312 Marlboro Street
Keene, N H 03431
Tel: (800) 541-4145 or (603) 352-2253
Web: www.hcsservices.org
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Psychiatric Nursing, Private Duty, Pediatric High Tech Nursing, Homemaker,
Home Medical Equipment, Home Health Aide
Interim HealthCare - Keene
403 Winchester Street
Keene, N H 03431
Tel: (800) 486-3746 or (603) 352-7290
Web: www.interimhealthcare.com/newhampshire
Interim HealthCare - Laconia
277 Union Avenue, Suite 202
Laconia, N H 03246
Tel: (800) 486-3746 or (603) 524-7212
Web: www.interimhealthcare.com/newhampslTire
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Interim HealthCare - Manchester
PO Box 1780
Tel: (800) 486-3746 or (603) 668-6956
Interim HealthCare - Nashua
159 Main Dunstable Road
Nashua, N H 03060
Tel: (800) 486-3746 or (603) 880-4412
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Interim HealthCare - Portsmouth
875 Greenland Road
Tel: (800) 486-3746 or (603) 436-4155
Interim HealthCare - West Lebanon
1 Glen Rd, Plaza Ste 222
West Lebanon, NH 03784
Tel: (800) 486-3746 or (603) 298-7411
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Lake Sunapee Region Visiting Nurse Association and Affiliates
PO Box 2209,107 Newport Road
New London, N H 03257-2209
Tele: (800) 310-4077 or (603) 526-4077
Web: www.lakesunapeevna.org
Pediatric High Tech Nursing, Respite Care, Respiratory Therapy, Rehab,
Psychiatric Nursing, Private Duty, Newborn Assessment, Homemaker, Home
Medical Equipment, Home Health Aide
Franklin VNA & Hospice
75 Chestnut Street
Franklin, NH 03235
Tel: (603) 934-3454
Web: www.vnafnh.org
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Pediatric High Tech Nursing, Respite Care, Respiratory Therapy, Rehab,
Psychiatric Nursing, Private Duty, Newborn Assessment, Homemaker, Home
Souhegan Home & Hospice Care
24 North River Road
Milford, N H 03055
Tel: (800) 453-1310 or (603) 673-3460
Web: www.souheganhhc.com
Respite Care, Respiratory Therapy, Rehab Nursing, Pediatric High Tech Nursing,
Newborn Assessment, Home Medical Equipment, Home Health Aide
Visiting Nurse & Hospice Care Services of Northern Carroll County, Inc.
PO Box 432
46 Seavey Street
North Conway, N H 03860
Tel: (603) 356-7006
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Web: www.thememorialhospital.org/visitingnurses.html
Psychiatric Nursing, Private Duty, Pediatric High Tech Nursing, Newborn
Assessment, Home Health Aide
Visiting Nurse Association of Manchester & Southern NH, Inc.
1850 Elm Street
Manchester, N H 03104-2911
Tel: (800) 622-3781or (603) 622-3781
Web: www.manchestervna.org
Respite Care, Respiratory Therapy, Rehab Nursing, Psychiatric Nursing, Private
Duty, Pediatric High Tech Nursing, Newborn Assessment, Homemaker, Home
Medicaid, Medicare, Private Insurer, Private Pay Sliding Fee
Upper Connecticut Valley Hospital Home Health Agency
181 Corliss Lane
Colebrook, N H 03576
Tel: (603) 237-8460
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Web: www.hitchcock.org/pages/dha/vcvh.html
Respite Care, Respiratory Therapy, Rehab Nursing, Psychiatric Nursing, Private
Live Free Health Care
PO Box 218
New Hampton, NH 03256
Tel: (603) 346-4214
Web: www.LiveFreeHomeHealthCare.com
Respiratory Therapy, Rehab Nursing, Psychiatric Nursing, Private Duty,
Pediatric High Tech Nursing, Newborn Assessment, Homemaker, Home
Medicaid, Medicare, Private Insurer, Private Pay
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VNA and Hospice of VT and N H
46 South Main Street, Suite 1
White River Junction, VT
05001
Tel: (800) 858-1696 or (802) 295-2604
Web: www.vnanh.org
Speech Therapy, Respite Care, Rehab Nursing, Psychiatric Nursing, Private
Health Aide
VNA/Hospice of Southern
Carroll County and Vicinity, Inc.
PO Box 1620
South Main Street
Wolfeboro, N H 03894
Tel: (888) 242-0655 or (603) 569-2729
Web: www.vnahospice.net
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Speech Therapy, Respite Care, Rehab Nursing, Psychiatric Nursing, Private
Health Aide
Medicaid, Medicare, Private Insurer, Private Pay Sliding Fee
These agencies are a starting point. This list may not include all of the agencies in
the state that provide home health care services. Always check with your health
insurer about a list of home health agencies they cover.
Out of Home Respite and Residential Options
The Children's Specialty Hospital at Crotched Mountain
1 Verney Drive
Greenfield, N H 03047
Telephone: (800) 966-2672 or (603) 547-3311, X494
Web: www.crotchedmountain.org
Crotched Mountain offers a full range of education, clinical, rehabilitation and
residential support services for children and adults with disabilities from New
Hampshire.
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Residential Services: provides round-the-clock nursing care and medical
supervision by a team of physicians who specialize in the care of children who
have experienced a traumatic injury or who were born with a developmental
delay. Accepts children between the ages of 2 and 22 and who are medically
stable. Applicants can be admitted with tracheotomy, catheters, feeding tubes,
and orthopedic needs. The program rates are generally covered by private health
insurers or Medicaid.
Respite Services: The respite program serves families throughout N H who are
caring for children with complex medical needs and who need a break from a
sometimes stressful home schedule. Weekend, a week or longer respite is
available.
Cedarcrest
91 Maple Avenue
Keene, N H 03431
Telephone: (603) 358-3384
Web: www.cedarcrest4kids.org
Cedarcrest is a small, non-profit pediatric facility offering specialized care to
children from birth to age sixteen who have a variety of disabilities, including
high-risk medical conditions and/or multiple disabilities.
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Residential: Provides round-the-clock care for up to 26 children with complex
medical and developmental needs. A carefully orchestrated daily routine assures
individual attention to each child's medical, personal care and developmental
needs. This care is coordinated and supervised by the Medical Director and the
Director of Nursing Services.
Respite/Short Term Care: Cedarcrest provides short-term care, post-operative
care, feeding assessments and comprehensive evaluations. Cedarcrest also serves
as a transitional placement between hospital and home, providing both the
specialized medical care needed by the child as well as training for families
around the child's unique medical needs.
Resources for Specific Conditions and Disabilities
The following is a quick list of agencies, programs and organized groups that
provide information and support regarding specific conditions and disabilities
here in NH.
AIDS / HIV
Dartmouth-Hitchcock Medical Center - Infectious Diseases Clinic
(603) 650-6060
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Merrimack Valley Assistance Program
Web: www.mvap.org
(603) 226-0607
Greater Manchester Assistance Program (603) 623-0710
Positive Action (603) 775-2083
N H AIDS Hotline (800) 752-AIDS
N H Department of Health STD/ HIV Program (603) 271-4486
State of NH HIV Drug Reimbursement Program (603) 271-4483
Southern N H AIDS Task Force
Web: www.aidstaskforcenh.org
(603) 595-8464
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ALLERGIES / ASTHMA
The Food Allergy Group of Southern N H
(603) 888-9536 or (603) 888-1108
New England Asthma & Allergy Foundation of America
Web: www.asthmaandallergies.org
(877) 2-ASTHMA
Breathe NH (formally the American Lung Association of N H
Web: www.breathenh.org
(603) 669-2411
ARTHRITIS
Arthritis Foundation Northern New England Branch
Web: www.arthritis.org
(603) 224-9322 or (800) 639-2113
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AUTISM
Autism Society of New Hampshire
Web: www.nhautism,com
(603) 679-2424
Jacob's Bridge Through Autism Web: www.jbtautism.org
Asperger's Association of New England (AANE)
Web: www.aane.org
(617) -393-3824
BLIND / VISUALLY IMPAIRED
N H Blind and Visually Impaired (NHBVI)
www.nhbvi.com
N H Chapter of the National Association for Parents of Children with Visual
Impairments (NAPVI)
Web: www.spedex.com/napvi
(603) 432-2273
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New Hampshire Association for the Blind
Web: www.sightcenter.com
(800) 464-3075 or (603) 224-4039
BRAIN INJURY
Brain Injury Association of New Hampshire
Web: www.bianh.org
(800) 773-8400 or (603) 225-8400
CANCER
Childhood Cancer Lifeline
Web: www.childhoodcancerlifeline.org
(603) 645-1489
American Cancer Society
Web: www.cancer.org
(603) 472-8899
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CARDIAC
American Heart Association
Web: www.americanheart.org
(603) 669-5833
CYSTIC FIBROSIS
Cystic Fibrosis Foundation, Northern New England Chapter
Web: www.cff.org/Chapters/newengland
(603) 598-8191
DEAF AND HARD OF HEARING
Northeast Deaf and Hard of Hearing Services
Web: www.ndhhs.org
(800) 492-0407
HEAR in New Hampshire
Web: www.hearinnh.org
(603) 624-4464
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DIABETES
N H Chapter of the Juvenile Diabetes Research Foundation
Web: www.jdrf.org/newhampshire
(603) 222-2300
American Diabetes Association N H Branch
Web: www.diabetes.org
(603) 627-9579
DOWN SYNDROME
Northern New England Down Syndrome Congress
Web: http://nnedsc.org
(603) 622-6904
DWARFISM
New England Chapter Little People of America
Web: www.lpadl.org
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FRAGILE X
New Hampshire Fragile X Resource Group
Web: www.fragilex.org/html/newhampshire.htm
(603) 329-4632
HEMOPHILIA
New England Hemophilia Association
Web: www.newenglandhemophilia.org
(781) 326-7645
LIVER
American Liver Foundation New England Chapter
Web: www.liverfoundation.org/chapters/newengland
(800) 298-6766 or (617) 527-5600
MENTAL HEALTH
National Alliance for the Mentally 111 New Hampshire Chapter
Web: www.naminh.org
(800) 242-6264
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MITOCHONDRIAL
Marcel's Way-
Website: http://www.marcelsway.org
(877) 412-4141 or (603) 487-5500
MULTIPLE SCLEROSIS
National MS Society New England Chapter
Web: www.nationalmssociety.org
(800) 493-9255
MUSCULAR DYSTROPHY
Muscular Dystrophy Association
Web: www.mdausa.org
(603) 471-2722
PRADER - WILLI SYNDROME
Prader-Willi Syndrome Assoc, of New England
Web: http://members.aol.com/pwsane
(508) 478-2065
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RETINOBLASTOMA
New England Retinoblastoma Support
Web: www.spedex.com/napvi
(800) 562-6265
SPINAL CORD INJURY
N H Chapter National Spinal Cord Injury Association
Web: www.nhspinal.org
(603) 216-3120
TOURETTE SYNDROME
Maine /New Hampshire Chapter Tourette Syndrome Association
Web: www.tsa-maine.org
(877) 368-9800 or (207) 428-3040
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NH Department of Health and Human Services (NHDHHS)
RSA 126-A: 4
Department Established
"... to provide a comprehensive and coordinated system of services, to promote
and protect the health, safety and well-being of NH citizens, directed at
supporting families, strengthening communities and developing the
independence and self-sufficiency of N H citizens to the extent possible."
The N H Department of Health and Human Services is an agency that helps
people in partnership with families, community groups, private providers, other
governmental agencies and many thousands of foster parents, neighbors, and
citizens. The majority of the people who use programs and services have
multiple needs and require services from more than one program. DHHS is
responsible for many of the regulatory, programmatic, and financial aspects of
NH's health care system and plays a key role in the planning, delivery and
financing of health care. It provides social and support services to families with
chronically ill or disabled members and to families in crisis. DHHS also provides
economic supports including child care funding, financial grants, employment
support services, medical assistance, food assistance and child support services.
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Financial and social services are provided, to a large extent, through a network of
12 District Offices located across NH. Behavioral health services are made
available through Community Mental Health Centers, institutions such as the
Glencliff Home for the Elderly, New Hampshire's Acute Care Psychiatric Facility
and the Tirrell House. People with developmental disabilities receive
community-based services through a system of non-profit Area Agencies. In
addition, DHHS provides services through networks of contractual providers,
both public and private. Local contractors complement and expand DHHS'
capacity to provide community-based services.
Web: www.dhlis.state.nh.us
NHDHHS
District Offices (DO's)
Twelve DHHS "field" offices, called District Offices (DO), provide a single point
for individuals and families to access DHHS services within their own
communities. District Office staff determine eligibility or provide help for
individuals and families for a wide array of programs and services. Programs
and services available at a DHHS District Office include: financial assistance,
child support enforcement, nursing home care and long term care, protective
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services for elderly and disabled individuals, child protection, foster care,
adoption, juvenile justice, food stamps, child care, Medicaid and other medical
assistance programs.
Berlin Office
231 Main Street
Berlin, N H 03570
Main Number: (603) 752-7800
Toll Free Number: (800) 972-6111
TDD Number: (800) 735-2964
Claremont Office
17 Water Street Suite 301
Claremont, NH 03743
Main Number: (603) 542-9544
TDD Number: (800) 735-2964
Concord Office
40 Terrill Park Dr.
Concord, N H 03301
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Main Number: (603) 271-6200
TDD Number: (800) 735-2964
Conway Office
73 Hobbs Street
Conway, N H 03818
Main Number: (603) 447-3841
TDD Number: (800) 735-2964
Keene Office
809 Court Street
Keene, NH 03431
Main Number: (603) 357-3510
TDD Number: (800) 735-2964
Laconia Office
65 Beacon Street W.
Laconia, N H 03246
Main Number: (603) 524-4485
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TDD Number: (800) 735-2964
Littleton Office
80 N. Littleton Road
Littleton, NH 03561
Main Number: (603) 444-6786
TDD Number: (800) 735-2964
Manchester Office
195 McGregor St. Suite 110
Main Number: (603) 668-2330
TDD Number: (800) 735-2964
NH DHHS Ombudsman Office
129 Pleasant Street Concord, N H 03301-3857
Telephone: 800-852-3345 X 6941 or (603) 271-6941
TDD Number (800) 735-2964
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The Ombudsman Office assists clients, employees and members of the public to
resolve disagreements related to matters within the jurisdiction of DHHS. Types
of issues the Ombudsman Office deals with are complaints regarding:
D Medicaid services
• Cash assistance services
• Services to persons with developmental disabilities
• Mental illnesses and substance abuse problems
• Regulatory problems
• Services for children, youth and families
• Juvenile justice services;
• Administrative decisions
• Employee concerns
D Any other services provided by DHHS or its contractors.
The Ombudsman Office utilizes unbiased investigation, mediation and other
alternative dispute resolution methods and provides information and referral
services.
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Nashua Office
19 Chestnut Street
Nashua, N H 03060
Main Number (603) 883-7726
Toll Free Number (800) 852-0632
TDD Number (800) 735-2964
Portsmouth Office
30 Maplewood Avenue Suite 200
Main Number (603) 433-8300
TDD Number (800) 735-2964
Rochester Office
150 Wakefield Street Suite 22
Rochester, N H 03867
Main Number (603) 332-9120
TDD Number (800) 735-2964

Salem Office
154 Main Street
Salem, N H 03079
Main Number (603) 893-9763
TDD Number (800) 735-2964
NHDHHS Services: Division of Family Assistance (DFA)
129 Pleasant Street
Concord, N H 03301
Telephone: (800) 852-3345 X4238 or (603) 271-4238 /TDD: 800-735-2964
Web: www.dhhs.state.nh.us/DHHS/DF A/CONTACT+INFO/default.htm
Client Services - (800) 852-3345 x4238 or (603) 271-4238
Client Services TDD - (800) 735-2964
EBT Electronic Benefit Client Questions - (888) 997-9777
The Division of Family Assistance (DFA) administers programs and services for
eligible N H residents providing financial, medical and food & nutritional
assistance, help with child care costs, and emergency help to obtain and keep
safe housing. Family assistance staff helps to determine initial and continuing
eligibility. The amount of benefits and delivery of benefits is determined using
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federal and N H guidelines and policies. There are seven major types of
assistance administered by DFA for N H residents. The following is a brief
description of those assistance types.
These services are accessed through the DHHS District Office (DO).
• Cash Assistance is provided through DFA in two general program areas, the
Temporary Assistance for Needy Families (TANF) and State Supplemental.
• TANF provides assistance to needy families with dependent children and is
divided into two programs, the NH Employment Program (NHEP) and the
Family Assistance Program (FAP).
• State Supplemental is divided into three programs and provides assistance to
the disabled, blind and seniors through the Aid to the Permanently and Totally
Disabled (APTD) Program, the Aid to the Needy Blind (ANB) Program and the
Old Age Assistance (OAA) Program.
• Food and Nutritional Assistance assists individuals and families through the
Food Stamp program.
• Medical Coverage assists disabled and elderly adults, blind individuals,
children, pregnant women and families through the Medicaid and N H Healthy
Kids Programs. DFA determines eligibility for medical coverage and works
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cooperatively with the Office of Medicaid Business and Policy, the Division of
Elderly & Adult Services, the Division of Developmental Services and the NH
Healthy Kids Corporation to ensure that eligible adults and children have access
to needed health care services. Preventative dental care is included for those
under age 21.
• Emergency Assistance assists families with dependent children who may
qualify for TANF in obtaining and keeping safe and healthy permanent housing.
NHDHHS Division of Family Assistance
• Medicare Beneficiaries Savings Program assists individuals who qualify for
Medicare coverage through the Social Security Administration by paying some
of the associated costs of Medicare coverage such as monthly premiums or
required deductibles.
• Child Care Assistance assists parents engaged in work, training or
educational activities leading to employment to afford quality care for their
children. DFA determines eligibility based on rules and policies administered by
the Child Development Bureau. Payments to child care providers are
coordinated by DFA in cooperation with the Child Development Bureau. Cash
assistance is issued twice per month via Electronic Funds Transfer (EFT) or
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Electronic Benefits Transfer (EBT). Cash assistance issued via EFT is deposited
directly into an individual's checking or savings account and is accessible in the
same manner as any other cash in the account. Cash assistance issued via EBT is
accessed through a debit-style EBT card and individuals can either swipe the
EBT card through a point-of-sale machine at participating retailers or use ATM
machines to access the cash assistance. Food Stamp benefits are issued once per
month via EBT and individuals swipe the EBT card through a point of sale (POS)
machine at participating retailers when purchasing food.
Office of Medicaid Business and Policy
129 Pleasant Street
Concord, N H 03301-3857
Telephone: (800) 852-3345 X5254 or (603) 271-5254
TDD Number - (800) 735-2964
Web: www.dhhs.state.nh.us/DHHS/MEDICAIDPROGRAM/default.htm
Client Services: (800) 852-3345 X4344 or (603) 271-4344
The Medicaid program is a federal and state funded program that serves
individuals and families who meet financial and /or other eligibility
requirements. The Division of Family Assistance (DFA) determines financial
eligibility and categorical eligibility and Medicaid Administration determines
227
medical eligibility when it is required. The program provides payment for
medical services ranging from routine preventive medical care for children to
institutional care for the elderly and disabled.
NHDHHS Office of Medicaid Business and Policy
Some of the specific medical services covered by the Medicaid program include
hospital, physician, nursing facility, home health, lab, x-ray, family planning,
rural health clinics, prescription drugs, physical-occupational-speech therapy,
adult medical day care, medical transportation, medical supplies, durable
medical equipment, dental, chiropractor, psychotherapy, podiatry, interpreter,
advanced registered nurse practitioners, certified midwife, private duty nursing,
EPSDT (early, periodic, screening and diagnostic testing), newborn home visits,
extended services to pregnant women, personal care attendant, vision care,
audiology, nursing facility, home and community based care for the elderly. The
program also covers services for developmentally disabled individuals and
persons with acquired brain disorders, as well as services at community mental
health centers.
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Targeted Health Services
• Healthy Kids: administered in partnership with the N H Healthy Kids
Corporation, this program provides health care access to NH's uninsured
children by promoting healthy lifestyles, encouraging preventive health and
dental care, treating illness early and managing chronic health conditions.
D Home Care for Children with Severe Disabilities (HC-CSD), commonly
referred to as the Katie Beckett program: Administered in partnership with the
Division of Family Assistance (DFA) for severely disabled children up to age 19
whose medical disability meets SSI eligibility criteria for children and be
institutional level of care, but are cared for at home.
• Home and Community Based Care for Acquired Brain Disorders (HCBC-
ABD): managed by the HHS, Division of Developmental Services (DDS), these
services are available to individuals with traumatic brain injuries or neurological
disorders that chose to remain in community settings in lieu of
institutionalization.
• Home and Community Based Care for Developmentally Disabled (HCBC-
DD): managed by the HHS, Division of Developmental Services (DDS), these
services are available to individuals with developmental disabilities and their
families who chose to remain in community settings in lieu of
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institutionalization. Developmental disability determinations for eligibility for
services are made within DDS.
• In Home Supports (HCBC-IHS): managed by the HHS, Division of
Developmental Services (DDS), these services are available to children under the
age of 21 with significant needs and who reside at home with their families.
Developmental disability determinations for eligibility for services are made
within DDS. This program is also referred to as Independence Plus.
Office of Community & Public Health Bureau of Maternal & Child Health
29 Hazen Drive
Concord, N H 03301
Telephone: (800) 852-3345 X4517 or (603) 271-4517
TDD Number: (800) 735-2964
Web: www.dhhs.state.nh.us/DHHS/BMCH/default.htm
Bureau of Maternal and Child Health administers a broad array of programs.
Community health agencies around the state receive funds through contracts
with BMCH to deliver services to pregnant women and their infants including
prenatal care, child health services, family planning and home visiting services.
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BMCH staff develops program guidelines based on best practices and monitor
the performance and quality of services delivered.
BMCH also administers these programs:
• The Sudden Infant Death Syndrome (SIDS) Program offers information,
support and resources to family and care providers of infants suspected to have
died of SIDS.
• The Newborn Metabolic Screening Program monitors the blood screening of
all infants born in N H for as many as 32 potentially serious disorders and
ensures immediate follow-up for abnormal results.
• The Universal Newborn Hearing Screening Program screens newborns for
possible hearing loss or deafness to ensure timely and appropriate intervention.
• The Preschool Vision & Hearing Program conducts screening clinics
throughout N H for children ages 3 1/2 to 6 years old and provides referrals and
follow-up.
NH DHHS Division for Children, Youth & Families
129 Pleasant Street
Concord, N H 03301
231
Telephone: (800) 852-3345 X4451 or (603) 271-4451
TDD Number: (800) 735-2964
Web: www.dhhs.state.nh.us/DHHS/DCYF/default.htm
The Division for Children, Youth and Families manages protective programs on
behalf of NH's children, youth and their families. DCYF staff provides a wide
range of family-centered services with the goal of meeting a parent's and a child's
needs and strengthening the family system. Services are designed to support
families and children in their own homes and communities whenever possible,
as long as safety is not an issue. DCYF is comprised of six major program areas.
Bureau of Child Protection: Telephone: (800) 852-3345 X4451 or (603) 271-4451
Child Abuse Report Line: (800) 894-5533
The Bureau of Child Protection works to protect children from abuse and neglect
while attempting to preserve the family unit.
Foster Care: Telephone: (800) 852-3345 X4711 or (603) 271-4711
Specially trained Foster Care Workers in each DHHS District Office recruit, train
and license foster families and match children entering the system with a foster
family best suited to meet the specific needs of each child.
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Adoption: Telephone: (800) 852-3345 X4707 or (603) 271-4707
Placement specialists provide assessment and case management services for
children whose parents' parental rights have been terminated. Children are
assessed for potential adoption and adoptive parents are recruited, trained and
provided with needed support.
Domestic Violence Services: Telephone: (800) 852-3345 X4702 or (603) 271-4702
Domestic Violence Program Specialists employed by local community crisis
centers are located in each DHHS District Office (DO) to help identify domestic
violence situations and provide support to victims of domestic violence.
Child Development Bureau: Telephone: (800) 852-3345 X4451 or (603) 271-4451
The Child Development Bureau provides technical assistance and support to
early care and education programs as well as provides consumer education and
child care training programs to help communities develop and maintain child
care programs.
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Child Welfare Resources
NH Foster and Adoptive Parent Association
PO Box 2802
Concord, N H 03302
Telephone: (877) 964-3272
Web: www.nhfapa.org
This organization, comprised of individuals who promote by attitude and action,
constructive social action needed to bring about changes and improvements in
Child Welfare Systems and in Legislation pertaining to all Children and Families.
They also act as an information center and research body regarding Child
Welfare matters and disseminate such information, as well as provide the vehicle
for communication among Foster and Adoptive Parents, Local Foster and
Adoptive Parent Associations and Child Welfare Agencies.
Manchester Headquarters
99 Hanover St. Manchester, N H 03105
Telephone: (800) 640-6486 or (603) 518-4001
Web: www.cfsnh.org
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Child and Family Services is an independent nonprofit agency dedicated to
advancing the well-being of children by providing an array of social services to
strengthen family life and by promoting community commitment to the needs of
children.
Casey Family Services
105 Loudon Road, Bldg. 2
Concord, N H 03301
Telephone: (800) 417-7375 or (603) 224-8909
Web: www.caseyfamilyservices.org
Casey Family Services is a fully licensed and accredited nonprofit child welfare
agency. Casey Family Services provides foster care (including treatment care and
supporting youth making the transition to independence) along with post-
adoption, family reunification, preservation and advocacy and other services for
families and children. Casey Family Services has also established innovative
community-based programs to strengthen families and enable parents to provide
the healthy, nurturing environments their children need to grow and thrive.
235
Casey Family Services Casey Family Services Resource Center
551 Meadow St. Franklin Middle School
Littleton, N H 03561 200 Sanborn Street
Telephone: (866) 622-2739 or (603) 444-9909 Franklin, N H 03235
Telephone: (603) 934-3170
Lutheran Social Services of Northern New England
261 Sheep Davis Road, Suite A-l
Concord, N H 03301
Telephone: (603) 224-8111
Web: www.lssne.org/aboutus.html
Lutheran Social Services of New England Offers the following programs here in
NH.
• International adoption services in Concord, N.H.;
• Therapeutic Foster Care in Concord, N.H.;
• The Antrim Girls Shelter, Antrim, N.H.
• Interfaith Refugee Resettlement in Concord, N.H.
236
NH Catholic Charities
215 Myrtle Street
PO Box 686
Manchester, N H 03105-0686
Telephone - (800) 562-5249 or (603) 669-3030
Web: www.catholiccharitiesnh.org
N H Catholic Charities provides a range of social services to persons regardless of
creed, social, or economic background. Through a network of offices and
parishes throughout the ten counties of the state their services strive to heal,
comfort, and empower persons in need and to advocate for social justice.
Family Strengths
Home-Based Behavioral Health Solutions
85 North State Street
Concord, New Hampshire 03301
Telephone: (603) 228-3266
Web: www.familystrength.org
Family Strengths is a non-profit agency providing state of the art, in-home
counseling and support to individuals and families throughout New Hampshire.
237
From regional offices around the state, Family Strengths offers a flexible array of
culturally sensitive services to help family members of all ages address a variety
of challenging life circumstances and crises.
Seacoast Region, Manchester Region, Southwestern Region
728 Central Avenue
Dover, N H 03820
Telephone: (603) 742-5662
540 Chestnut Street
Telephone: (603) 641-3001
206 Roxbury Street
Keene, N H 03431
Telephone: (603) 357-8772
Western Region Derry/Salem Region North Country Region
169 Main Street
Claremont, N H 03743
Telephone: (603) 543-5984
238
72 West Broadway
Derry, NH 03038
Telephone: (603) 432-0463
123 Main Street
Gorham, N H 03581
Telephone: (603) 466-9015
Children's Alliance of NH
2 Greenwood Avenue
Concord, N H 03301
Telephone: (603) 225-2264
Web: www.childrennh.org
The Children's Alliance of New Hampshire is a statewide, nonprofit advocacy
organization with over a decade of experience working on behalf of the health
and well being of the children of this state.
Division of Developmental Services (DDS)
105 Pleasant Street
Concord, N H 03301-3857
239
Telephone: (800) 852-3345 or (603) 271-5034 /TDD: (800) 735-2964
Web: www.dhhs.state.nh.us/DHHS/DDS/default.htm
The Division of Developmental Services (DDS) works with NH's developmental
services system to ensure public resources are used effectively to support
individuals and families in their community. The N H developmental services
system offers its consumers with developmental disabilities and acquired brain
disorders a wide range of supports and services within their own communities.
DDS is comprised of a main office in Concord and 10 designated non-profit and
specialized service agencies that represent specific geographic regions of NH; the
community agencies are commonly referred to as Area Agencies. All direct
services and supports to individuals and families are provided in accordance
with contractual agreements between DDS and the Area Agencies. Supports
include service coordination, day and vocational services, personal care services,
community support services, assistive technology services, specialty services and
flexible family supports including respite services and environmental
modifications. Funding for supports and services for people with developmental
disabilities and acquired brain disorders in N H is provided through two primary
mechanisms: the Medicaid Home and Community Based Care Waiver and funds
commonly referred to as "state flexible funding." DDS operates three Medicaid
240
Home and Community Based Care Waivers. The Home and Community Based
Care For Individuals with Developmental Disabilities waiver (HCBC-DD), The
Home and Community Based Care For Individuals with Acquired Brain
Disorders waiver (HCBC-ABD) and the In Home Supports (HCBC-HIS) for
children with developmental disabilities.
Acquired Brain Disorder Services
105 Pleasant Street
Concord, N H 03301-3857
Telephone: (800) 852-3345 or (603) 271-5034 /TDD: (800) 735-2964
Web: http://www.dhhs.state.nh.us/DHHS/DDS/default.htm
Offers eligible adults with acquired brain disorders and traumatic brain injuries a
wide range of supports and services within their communities. All direct services
and supports to individuals and families are provided through the
Developmental Disabilities Area Agency system.
241
Family Resource Centers
Family Resource Centers offer a welcoming atmosphere for family-oriented
programs, resources, activities and classes to strengthen families and promote
positive parenting. A Family Resource Center is a non-profit, community-based
setting available and accessible to all families in that community. The center has
services and programs that are designed to meet the needs of the community it
serves. Individuals may access services not only in times of need, but as a regular
part of day-to-day life.
The Children's Place & Parent Education Ctr.
27 Burns Avenue
Concord, N H 03301
Telephone: (603) 224-9920
Web: www.thechildrensplacenh.org
Concord Heights Neighborhood Family Center
The Dame School
14 Canterbury Road
Concord, N H 03301
242
Telephone: (603) 225-0830
Web: www.concord.kl2.nh.us/comm/dam/dame.html
Families First of the Greater Seacoast
100 Campus Drive
Telephone: (603) 422-8208
Web: www.familiesfirstseacoast.org
Family Connections at the Adult Learning Center
4 Lake Street
Nashua, NH 03060
Telephone: (603) 882-9080 X205
Web: www.adultlearningcenter.org
Family Resource Center of Gorham
123 Main Street
Gorham, N H 03581
Telephone: (603) 466-5190
243
Web: www.frcberlin-gorham.org
The Grapevine Family & Community Resource Center
43 Main Street
Antrim, N H 03440
Telephone: (603) 588-2620
The HUB Family Resource Center
23 Atkinson Street
Dover, NH 03820
Telephone: (603) 749-9754
Web: www.hubfamilies.org/
Lakes Regional Community Services Council Giggles and Grins Family Resource
Center
67 Communications Drive
Laconia, N H 03247
Telephone: (603) 524-8811
244
Child & Family Services
99 Hanover Street
Telephone: (603) 668-1920
Web: www.cfsnh.org
Easter Seals - The Family Place
Cozy Corners Plaza #5
61 Route 27/107
Raymond, N H 03077
Telephone: (603) 895-1522
Family Resource Centers
The Upper Room
36 Tsienneto Road
Derry, N H 03038
Telephone: (603) 437-8477
Web: www.urteachers.org
White Birch Community Center
9 Hall Avenue
Henniker, N H 03242
Telephone: (603) 428-7860
Web: www.whitebirchcommunitycenter.org
Riverbend Parent-Child Centers
Locations in Concord, Penacook, Pittsfield, Franklin and Hillsboro
70 Pembroke Road
Concord, N H 03302
Telephone: (603) 226-7505 X3215
Web: www.riverbendcmhc.org
Family Connections Center
Lakes Region Facility
1 Right Way Path
Laconia, N H 03246
Telephone: (603) 528-9266
246
Good Beginnings of Sullivan County
169 Main Street
Claremont, N H 03743
Telephone: 542-1848
Web: http://sullivancounty.goodbeginnings.net/
Monadnock Family Services
64 Main Street
Keene, N H 03431
Telephone: (603) 357-6870
Web: www.mfs.org/
Family Center of Greater Peterborough
P.O. Box 207
44-46 Concord Street
Peterborough, N H 03458
Telephone: (603) 924-6306
Web: www.thefamilycenter.us
247
Wolfeboro Area Children's Center
180 South Main Street
Wolfeboro, N H 03894
Telephone: (603) 569-5733
Web: www.wolfeborochildren.org/
Whole Village Family Resource Center
258 Highland Street
Plymouth, NH 03264
Telephone: (603) 536-3720
Web: www.wholevillage.net
Family Resource Center at Franklin Middle School Casey Family Services
200 Sanborn Road
Franklin, NH 03235
Telephone: (603) 934-3170
248
VNA Community Services
33 South Commercial Street, Suite 401
Telephone: (603) 622-3781
Web: www.manchestervna.org
Family Resource Connection NH State Library
20 Park Street
Concord, NH 03301
Telephone: (800) 298-4321
Web: www.nh.gov/nhsl/frc/faq.html
Special Needs Support Center of the Upper Valley Parent to Parent of New
Hampshire
12 Flynn Street
Lebanon, NH 03766
Telephone: (800) 698-LINK (5465) or (603) 448-6311
Web: www.snsc-uv.org
Web: www.parenttoparentnh.org
249
Offers parent to parent matches, information and referral, and training.
NH Family Voices
129 Pleasant Street
Concord, NH 03301
Telephone: (800) 852-3345 X4525 or (603) 271-4525
Web: www.nhfv.org
Parent support, lending library, resources, information as well as specialized
supports for families having children with special health care needs.
Parent Information Center
P.O. Box 2405
Concord, N H 03302-2405
Telephone: (800) 232-0986 or (603) 224-7005 (V/TTY)
Web: www.parentinformationcenter.org
Provides information, referrals, workshops and support to families of children
with disabilities.
250
Upper Valley Fatherhood Network
66 Benning Street, Suite 6
W. Lebanon, N H 03784
Telephone: (603) 443-5154
Serving men in the Upper Valley, the Fatherhood Network has individual
assistance, as well as support groups discussing parenting, custody, discipline
and many other topics of interest.
Easter Seals Autism Network, Family Support Program
555 Auburn Street
Telephone: (877) -6AUTISM (628-8476)
The Easter Seals Autism Network Family Support Program offers the following
services to support parents raising a child with an Autism Spectrum Disorder:
Support Meetings, Seminars and Parent Education, Respite Program, Family
Social Events, and more.
251
99 Hanover Street
Telephone: (800) 640-6486 or (603) 518-4000
Web: www.cfsnh.org
Offers many family support programs. Example: Parenting Plus, Families
Connecting Family Skills. This program offers emotional support and practical
solutions in managing family life. In home supports help to develop skills in
areas of discipline, communication, budgeting, nutrition, conflict resolution and
resourcefulness. There is no fee for this support. Offered through the following
offices:
Child and Family Services/Manchester Child and Family Services, Nashua
Telephone: (800) 640-6486 or (603) 518-4000 Telephone: (603) 889-7189
Child and Family Services, Concord Health First, Franklin
Telephone: (877) 556-7479 or (603) 224-7479 Telephone: (603) 934-4885
252
Child and Family Services, Littleton
Telephone: (603) 444-0418
Family Support New Hampshire (FSNH)
PO Box 64
Concord, N H 03302-0064
Email: info@fsnh.org
Web: www.fsnh.org
FSNH acts to bring together the diverse leadership from existing and forming
family resource centers and family support programs within New Hampshire
under the common vision of establishing a statewide network of family support
practice.
Family Resource Connection NH State Library
20 Park Street
Concord, N H 03301
Telephone: (800) 298-4321 or (603) 271-7931
Web: www.nh,gov/nhsl/frc
The Family Resource Connection is a lending library with topics relating to
families with children. Their website includes: an online Directory of Children's
253
Services and Family & Youth Development Calendar listing statewide
workshops, classes, conferences and other events for professionals and families
who provide care, health, and education for children
254
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259
Curriculum Vitae
CONTACT INFORMATION
Ann Kline
20 Sargent Road, Brookline, NH, 03033
Home: 603-672-0454
Cell: 508-561-5471
Email: annkline78@gmail.com
EDUCATION
May, 2009 Boston University Boston, MA
Post -Professional Doctor of Occupational Therapy (OTD)
September, 2006 Boston University Boston, MA

Post -Professional Master of Science in Occupational Therapy
January, 2001 Quinnipiac University Hamden, CT
Bachelor of Science in Occupational Therapy
CERTIFICATIONS
• Certified New Hampshire Early Intervention Provider, July 2003

• National Board Certification in Occupational Therapy: Registered
Occupational Therapist
• Occupational Therapist, Commonwealth of Massachusetts
• Occupational Therapist, State of New Hampshire
• Sensory Integration and Praxis Test Certification
260
EMPLOYMENT HISTORY
Pediatrics:
Responsibilities include/but are not limited to:
• Providing in-depth Occupational Therapy assessments/evaluations
• Creating and maintaining treatment plans and goals related to therapy
• Provide oral/written communication with family, medical staff and school

staff, doctors, adaptive equipment vendors, wheelchair vendors and
insurance companies.
January 2009-Present
Staff Occupational Therapist (contracted position through Clark Associates)
Nashua School District, Nashua, N H
• School based therapy in preschool aged classrooms
• Occupational Therapy evaluation
• Consultation to child's team
December 2008-Present
Staff Occupational Therapist (hourly)

Groton Integrated Therapies (Private Pediatric Clinic), Groton, MA
• Provide Sensory Integration based therapy/evaluation
• Clinic therapy, Consultation to child's team
• Home based consultations/sensory based modifications in the home
261
Tanuary 2008-October 30, 2008
Staff Occupational Therapist and member of feeding team
Seven Hills Pediatric Center (Pediatric Nursing Home and onsite Special
Education School) Groton, MA
• Provided Occupational Therapy services to children and adults who were

medically fragile and dependent on all self care tasks
• Member of Feeding Therapy Team
• Created adaptive equipment, splints and adapted/modified wheelchairs
Tune 2006-Tanuary 2008
Staff Occupational Therapist/Feeding Team Member and Developer of First

Pediatric OTISensory Integration Clinic in the Hospital Outpatient setting
Southern New Hampshire Medical Center- Pediatric Occupational Therapy and

Sensory Integration Clinic Nashua, N H
• Occupational Therapy treatment and evaluation
• Member of Pediatric Feeding Team
• Consultations to child's team
• Responsible for Pediatric Occupational Therapy Budget/ Equipment

purchasing
February 2005-Tune 2006

Occupational Therapist assisted in development of new clinic
Easter Seals New Hampshire - The Family Place Sensory Integration Clinic,
Raymond, N H
• Occupational Therapy treatment and evaluation
• Responsible for creating clinic, school and community partnerships
262
Tuly 2003-Febmary 2005
Occupational Therapist (covered maternity leave and then became staff member)
School Administrative Unit 41 Brookline School District, Brookline, N H
February 2003 - Tune 2003

Occupational Therapist (Per Diem evenings)
Kidz Play Pediatric Therapy and Wellness Center, Londonderry, N H
• Provide Sensory Integration based therapy/evaluation
• Clinic therapy, Consultation to child's team
• Home based consultations/sensory based modifications in the home

December 2002-February 2005
Occupational Therapist (Per Diem)
Sunrise Early Intervention Program through Regional Services and Education
Consortium, Amherst, N H
• Home based Occupational Therapy treatment and team evaluations
• Transition/Placement meetings with local preschools/school districts
263
December 2002 - September 2003
Occupational Therapist (coverage of Maternity Leave)
Regional Services and Education Consortium: Sunrise Children's Center
(integrated preschool setting), Amherst, N H
September 2002 - December 2002
Occupational Therapist (contracted position)

The Protestant Guild for Human Services - The Learning Center, Waltham, MA
• Occupational Therapy treatment and evaluation in residential and school

based setting
Tuly 2002 - August 2002

CNS Pathways Academy on Grounds of Mc Lean Hospital, Belmont, MA
• School based therapy for young men with Asperger's Syndrome
February 2002- Tune 2002

SAU#10 Derry Cooperative School District, Derry, N H
• School based therapy

264
March 2001 - February 2002
Occupational Therapist and Service Coordinator
Valley Child Development Center Early Intervention Program, Milford, MA
• Home based Occupational Therapy treatment and team evaluations

• Transition/Placement meetings with local preschools/school districts
Medical Rehabilitation:
Responsibilities include/but are not limited to:

• Evaluating patients referred for therapy
• Developing goals and treatment plans per individual patient
• Co-leading therapy groups
• Providing consultation to family and clients
• Providing Occupational Therapy treatment in home and hospital settings.
Tune 2006-Present
Staff Occupational Therapist (per diem)
Southern New Hampshire Medical Center Inpatient and Outpatient
Departments, Nashua, NH
Tune 2002-October 2005 and Tanuary 2009 to present

Occupational Therapist (Per Diem)
Saint Joseph Hospital Outpatient Rehabilitation Department, Nashua, N H
Saint Joseph Hospital Inpatient Rehabilitation Department, Nashua, N H
Senior Adult Mental Health Unit, Nashua, NH
Souhegan Home Health and Hospice, Nashua, N H
265
PROFESSIONAL MEMBERSHIPS
• World Federation of Occupational Therapists
• American Occupational Therapy Association
• New Hampshire Occupational Therapy Association
SKILL
American Sign Language
266

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BOSTON UNIVERSITY

SARGENT COLLEGE OF HEALTH AND REHABILITATION SCIENCES

A PARENT SUPPORT AND ADVOCACY PROGRAM:

ANN MARIE KLINE

B.S. Quinnipiac University, 2001

Submitted in partial fulfillment of the

requirements for the degree of

Doctor of Occupational Therapy

All rights reserved.

Academic Mentor. fioA (JtibU PU. ML FAttA

Academic Advisor ' '

terminal degree in my chosen field of practice. My daughter has been my

eight years. All of you have taught me that it is so important to believe in

know their child best!

I would not be where I am today personally and professionally, without the

have not asked for a more phenomenal group of colleagues to guide me on my

classmates, colleagues, New Hampshire Family Voices and colleagues at

Gateways Community Services, who were part of my circle of advisors.

ANN MARIE KLINE

Boston University, Sargent College of Health and Rehabilitation Sciences, 2009

Major Professor: Christine Helfrich, Professor of Occupational Therapy

comprehensive parent education, support and advocacy programs in New

Hampshire. Unfortunately, in the State of New Hampshire, most parents do not

years of my career, I have participated in parent education/support/advocacy

accessibility and comprehensiveness of parent support and advocacy education

journey and this has helped to shape ACCESSING CONNECTIONS.

ACCESSING CONNECTIONS is significant to the pediatric population and

common needs of parents of children with special needs or suspected needs. It

ACCESSING CONNECTIONS will also provide parents with a database of

program promises to be supportive of parents needs while providing them with

parents they want to be.

Reader Approval Page iii

Table of Contents vii

List of Tables xiii

Chapter 2: Theoretical and Evidenced Base to Support the Proposed Project 3

A: Current Methods of Parent Support 5

1. Peer Support Programs 5

2. Community Support Groups/Support from Medical

3. Care Coordination Services 11

C: Tools Currently In Use to Support Parents of Children with Special Needs 17

Strengths of Current Approaches 19

Limitations of Current Approaches 21

Support for Proposed Program 24

Chapter 3: Proposed Program Description and Information 26

Description of Proposed Program 30

Research Support for Proposed Program 38

Theoretical Perspectives used to Design the Program 39

Current Programs in Place in the State of New Hampshire 44

Potential Barriers and Challenges 45

Chapter 4: Evaluation Plan 51

Chapter 6: Funding Plan 61

Available Local Resources 63

Potential Funding Resources 73

Chapter 7: Dissemination Plan 76

Long Term Goals 78

Short Term Goals 79

Sources and Messengers 81

Dissemination Activities, Tools/Techniques, Timing and Responsibilities 81

Appendix B: Informational Survey for Parents 145

Demographic Information to Support Parent Networking 148

Appendix C: Data from National Family Voices Program 149

Appendix D: Class Four Outline 152

Appendix E: Class Four Resources 154