Professional Documents
Culture Documents
Doctoral Project
ACCESSING CONNECTIONS
by
2009
UMI Number: 3357661
Copyright 2009 by
Kline, Ann Marie
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© Copyright by
ANN MARIE KLINE
2009
Approved by
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
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
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
support of Boston University and all of the professors at Sargent College. I could
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
iv
A PARENT SUPPORT AND ADVOCACY PROGRAM:
ACCESSING CONNECTIONS
(Order No. )
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
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
programs and have observed that these programs are most effective and
beneficial for families if they are utilized and understood. Increasing both the
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
their parents, because it will be an education program that will address the
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.
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
the tools to manage the care of their children therefore allowing them to be the
Title Page i
Copyright page ii
Acknowledgements iv
Abstract v
Chapter 1: Introduction 1
Professionals 8
vii
B: Education Regarding Diagnosis 12
1: Education of Professionals 12
2: Education of Parents 14
Chapter Summary 19
Target Population and Criteria for Identifying Clients for the Program 29
Class 1 32
Class 2 33
Class 3 34
Class 4 35
viii
Class 5 36
Class 6 36
Class 7 37
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
Needed Resources 65
Budget Year 1 67
Year 2 Operation/Maintenance 69
Needed Resources 69
Budget Year 2 71
Dissemination Goals 78
Target Audiences 79
x
Key Messages 79
Budget 84
Evaluation 84
Appendix A: Annotations 86
Bibliography 255
XI
List of Tables
Table 1
Table 2
xii
A Parent Support and Advocacy Program: ACCESSING CONNECTIONS
Chapter 1: Introduction
daily basis, I chose to research and address the need for more accessible and
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.
are most effective and beneficial for families if they are utilized and understood.
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
address common concerns of families of children with special needs and ensure
concerns, how to cope with diagnosis and disabilities, how to navigate healthcare
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.
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
they feel they have "limited access" to this information. They also feel less
collaboration between disciplines (doctors and therapists) and that doctors and
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
and delivery for New Hampshire area families of children with special needs.
community resources for children ages birth through five, with special needs and
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
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
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
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
Singer, Sullivan, Powers, Marquis & Santelli, 1998, p. 99). It is also essential that
resourceful, congruent with other aspects of care and use a team approach
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
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),
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
mutuality of support.
and parents that need the support want to know and understand that
7
Positive outcomes that are obtained when participating in a parent to parent
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
school programs and helping parents to navigate the world of services from
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
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
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
who is a personal contact and this person helps to put them in contact with other
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
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
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,
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
to have one or two contact people out of a whole team to work mainly with to
programs. The services of care coordination should provide full access to needed
health, education and social services for families of children with special needs.
teams for families of children with special needs has also been found to be an
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
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
11
develop new approaches to coordinate care and interdisciplinary training should
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
1: Education of Professionals
need to arrange joint planning meetings with families of children with special
assistance and they need to understand financial barriers families might face in
12
services for their children (AAP, 1999 & 2001). Doctors need to be prepared to
monitor and guide development and address concerns (AAP, 2001). There were
studies that indicated pediatricians were unaware of how often parents were
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
families. We often have more time to spend with families than other medical
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
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
parent support and advocacy program available. Throughout the research there
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,
encompass information on how parents can make others aware of their needs.
Studies have been conducted to understand parents needs when their child
Syndrome and Seizure Disorders of unknown origin (Olson & Esdaile, 2000),
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
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
diagnoses, learning new skills (such as how to interact with health professionals
these coping strategies made parents feel more in control of their situation
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, further increasing the chance that their needs will not be met.
symptoms while Mazurek et al., (1998) reported that mothers had a stronger
reflected on the support they received to help them learn to decrease their stress
decrease the stress that parents face when having a child with special needs.
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
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
assist parents in getting, giving and organizing information regarding their child,
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
18
Summary
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
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
substantiate the effectiveness of parent support and advocacy programs are: that
how to support parents of children with special needs, there will be more
(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
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.
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
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
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.
It has been noted throughout the research that.a lack of evidenced based
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
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.
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.
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
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
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
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
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
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
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,
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
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
and advocacy classes that would empower parents of children with special
healthcare needs. The program will also provide parents with a resource guide
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
lending library of over 2,000 titles of books, videos, and audio tapes with a
26
relationships, behavior and social issues. Parents are able to access these items
NHFV is both grant and state funded and is a part of Family Voices which is a
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
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
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
27
The development of ACCESSING CONNECTIONS, will involve two steps to
address a critical gap in service acquisition and delivery for New Hampshire
the needs and concerns of local parents of children with special healthcare needs.
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
clinics and current families that access N H Family Voices programming. (Please
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
28
participants. Based on information obtained via surveys and phone calls,
participants may be grouped by similar culture, same age children, same age
The targeted population and criteria for identifying appropriate clients for my
similar needs
29
• Parents of children not involved in early intervention but that
Parents do not need to meet all criteria to become involved in the program.
The proposed program was created with the assistance of New Hampshire
Family Voices. The classes were developed from the following website
documents on the website noted above and from feedback that NHFV receives
on a daily basis.
• Quality Health Care for Children with Special Health Care Needs -
Outlines the principles that provide quality health care for children with
30
children with special medical needs.
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-
conditions.
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
• Does Your Child with Special Health Care Needs have a Medical
Home? - Learn about this new way of thinking around primary care.
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
The classes that will be provided will address the following topics:
minute talk with 30-60 minutes of socialization after class with refreshments
parents who may have more medically based questions. I plan to utilize
will meet with other pediatricians who may be interested in support and
advocacy programs.
returned, I will:
32
parents who suspect their child has a delay.
Class Two: How to cope with diagnosis and disabilities: (60-90 minute talk
many different kinds of support groups in the past and is very well
• counseling
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
I will co-teach this class with a professional who deals with insurance in
to help me obtain the help of this type of professional. I will also provide
I will research insurance plans prior to this class and talk about the
following topics:
insurances
services
34
Class Four: How to communicate with healthcare personnel and insurance
companies: (60-120 minute talk with 30-60 minutes of socialization after class
appendix E)
following information:
with professionals
to appointments
concern)
35
• How to obtain referrals for professionals you would like to
Class Five: Navigating the Resources: (60-120 minute talk with 30-60 minutes
information:
care professionals
hospital settings.
Class Six: How to connect with community and state supports: (60-120 minute
36
• I will create a running computerized list of organizations that
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)
• How to make sure that all siblings needs are met if there are
37
family members
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
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
systems that are in place in the state of New Hampshire and is feasible, relevant
Collectively, the studies that are presented throughout this project highlight
the need for parents to feel supported and educated about what their child's
systems and legislative impacts. It has been found that parents' stress and needs
38
can be addressed rather appropriately through support groups, pediatricians
address these unmet needs of families, several theories provide useful guidance.
& 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
actions, observational learning occurs. Self efficacy relates to how confident the
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
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.
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
transactions" (Heaney & Israel, 2002, p.187.) Heaney and Israel, (2002) emphasize
networks, as they (the participants) influence the quality and quantity of social
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
education on how to provide parents with skills to help them learn to provide
parents and to help them to identify those who could help them in their own
groups to show parents, that there are people to contact in the community to
Third, the Transactional Model of Stress and Coping was used to develop
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
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
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
Finally, Interdependence Theory (Kelley and Tibault, 1978 & Rusblat and
program because it is a dyad level social psychological theory that explains how
Since the program is based on interactions between all different types of people,
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
The theory also examines the degree to which interacting partners agree about
partners are fully cooperative with each other in determining the desired
change.
With the use of this theory, health educators can focus on skill building,
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
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 their quest for further information regarding their child and community/state
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
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
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
45
Table 1
Challenges that were present How they are currently being addressed? What is the plan to prevent challenges from
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
Will the organizations have time I was able to obtain commitments from
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
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.
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
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
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.
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.
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
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
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
my project, but many things will not be known until the project is closer to
challenges.
implementation evaluation assists with, " identifying and meeting the needs of
the outcomes and using performance measures to bridge the gap between
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
stakeholders for future development of the program. There are four stages to
51
Implementation Evaluation (Love, 2004) and questions to help develop an
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
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
were reviewed for their relevance to my proposed program and how I wanted
at in this stage: What are the needs of the parents that have sought out
52
attempted? What were the obstacles to their success? What resources are needed
Especially because of the state of the economy in the nation at this time, I need
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
program. A logic model is a brief diagram that will show a picture of how I
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
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:
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
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
that responsible use of the resources for the program occurs. I would also want
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
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
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?
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,
56
essential conditions necessary to gain the benefits. I would like to use the data
clients who might benefit from adopting or continuing to use the program.
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
questions may relate to the extent to which parents are meeting the objectives set
they state they are going to provide, and that the program can be justified for
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
goals and objectives and measuring how the program has done in reaching them
the key sources of both questions and the information to answer the questions.
objectives) and Impact (refers to the long-term outcomes of the program) may be
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
public.
58
Chapter 5: Conclusion:
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
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
parents needs while providing them with the tools to manage the care of their
promoting their programs and addressing the issue of referral for state and
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
needs/suspected needs and ensure that parents are provided with understanding
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
for New Hampshire area families of children with special needs. The program is
for children ages birth through five and to help parents learn to advocate for
61
(Area Agency Region-6) and the Parent Information Center of New Hampshire
address a critical gap in service acquisition and delivery for New Hampshire
the needs and concerns of local parents of children with special healthcare needs.
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
clinics and current families that access N H Family Voices programming. (Please
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
62
community/state programs that provide support and advocacy training and will
participants may be grouped by similar culture, same age children, same age
Services for the first year of the program. After the first year, rentals of
the first year of the program, space may need to be purchased or rented
for a fee.
63
Services and therefore their salary will be paid for by their current place of
work
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
donated to program.
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
be approximately $300.00
• Equipment:
•S Chairs and desks for one to three offices (the use of desks and
be free of charge)
65
S Video recorder (the video recorder used will be my own)
material, paper and ink will be free for the first year of the
program)
is donated to program)
• 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
($25.00 gift card each) and payment for presenter ($100.00 gift card)
66
Budget -
S Personnel
Community Services
classes
67
Project Evaluator Doctoral Student will volunteer $200.00
program)
44 cents/mailing $440.00
Other:
68
Year 2 - Operation/Maintenance of Program
NEEDED RESOURCES
$300.00 a month for rental of their space to include an office and meeting
12 months)
• Supplies for second year of the program: binders, paper, pens, markers,
and Gateways Community Services and this will be paid for through the
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
• 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
70
Budget -
•S Personnel
71
Development/Production of Educational Materials (cost is included in the
program)
44 cents/mailing $880.00
Other:
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
monetary donations
•S New Hampshire Family Voices: This agency could potentially fund parts
•S Statewide Early Supports and Services: This program at the state level
73
increase in access to health care, that would provide an increased ability for
families that were positive in nature and that would allow families to participate
their child.
o Family/Professional Partnership-Children
(CSHCN) grant
(SAMHSA) grant
74
S Brendan and Liam Shanahan Foundation
This organization that was formed by a longtime friend and classmate is willing
CONNECTIONS can utilize funds from the United States Department of Health
and Human Services Administration for Children and Families since the Institute
75
Chapter 7: Dissemination Plan
needs/suspected needs and ensure that parents are provided with understanding
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
for New Hampshire area families of children with special needs. The program is
children ages birth through five and to help parents learn to advocate for their
76
(Area Agency Region-6) and the Parent Information Center of New Hampshire
address a critical gap in service acquisition and delivery for New Hampshire
the needs and concerns of local parents of children with special healthcare needs.
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
clinics and current families that access N H Family Voices programming. (Please
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
77
strive to empower families to become advocates for their children. Parent
participants may be grouped by similar culture, same age children, same age
DISSEMINATION GOALS:
use, for services and assistance, whether or not their child qualifies for
through five with special needs will be highlighted and further utilized
78
SHORT TERM GOALS:
Hampshire.
services.
TARGET AUDIENCES:
Primary audience is parents of children ages birth through five with special
disciplines
KEY MESSAGES:
Primary Audience:
services and forming social support networks) to families of children with special
79
2. Participants will be grouped for education/support programs based on their
level, language spoken in the home, marital status and age of parents/children
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:
disseminating their products to families of children ages birth through five with
in place.
specific needs.
80
SOURCES/MESSENGERS:
especially for the primary audience. I have already partnered with these
agencies to provide the education classes and they are already in contact with
Written information:
81
Electronic media:
be January, 2010)
Person-to-person contact
cohort)
82
SECONDARY AUDIENCE: Organizations providing services to children with
Written information:
Electronic media:
be January 2010)
83
Person-to-person contact
cohort)
BUDGET:
EVALUATION:
WRITTEN MATERIALS: will send out short surveys with Likert Scales and
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.
returned surveys with feedback indicating that parents were able to easily
ELECTRONIC MATERIALS: will send out short surveys with Likert Scales and
method of dissemination. These will be sent out after each cohort of participants.
returned surveys with feedback indicating that parents were able to easily
EDUCATION CLASSES: will send out short surveys with Likert Scales and
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
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
about their child's disability, time management conflicts, appropriate respite care
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.
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
psychology research that was not a parent of a child with special needs or
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
Results: A successful parent to parent match for the program relied on the idea
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
listen and be supportive". It was noted that there needs to be quality control in
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
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
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
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
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
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
156, 6, 533-539.
Study Focus: The purpose of the study was to develop, implement and evaluate
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
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
family network" was designed to reduce the risk for mental health problems via
90
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
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
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
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
91
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
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
Critique: Strengths: The sample was large and sufficient for reasonable
statistical power and it was a randomized trail design completed in the United
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
92
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
mindful that the children participating in this study did not match the age range
taken into consideration and I should be aware that the needs of my targeted
93
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
Methods: Draft one of the KIT was pilot tested with 21 parents and 9 service
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
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
94
439 participants at time (1), 268 at time (2), and 206 at time (3). Interviews were
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
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
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
95
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
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.
communicate better with medical and therapeutic professionals, the need for
increased knowledge of their child's diagnosis and the need to maintain and use
were common themes found not only in this study but in other studies
96
doctoral project because they highlight common issues for parents and can help
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
and I need to also be aware that the needs of my targeted population may be
different.
97
Annotation 4
Hinojosa, J., Sproat, C. T., Mankhetwit, S. P., & Anderson, J. M. (2002). Shifts in
Study Focus: The purpose of the study was to "identify occupational therapists'
Therapists working with parents of children with cerebral palsy did not believe
that basic professional education had adequately prepared them for working
disabilities.
states, the amount of them returned equaled 327 and only 199 therapists
independence at the alpha level of .05. After calculating descriptive statistics for
98
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
of respondents had a BSOT degree 36.7% had an MSOT degree and 1% had a
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
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
99
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
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
child needs ranked high in score of being difficult challenges therapists face.
assume care of their child and they did not follow through with
were identified were: that parents often placed trust in therapist's professional
disability.
100
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
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.
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
101
Annotation 5
Rodger, S. M. (2005). Getting the run around: accessing services for children with
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
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
assess all children and they all had scores that put them below the 15th percentile.
relation to academic skills and activities of daily living. All children engaged in
102
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"
Results: Results were broken down into two terms: common participation problems
experienced by children with DCD that led parents to seek referral and services
difficulties participating in play and leisure activities, difficulties with self care
skills (especially dressing/ eating/ organization), gross motor skills, missed social
difficulties with handwriting. Parents were often frustrated with the health and
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.
103
Parental advocacy appeared to be a critical factor enabling these parents to find
appropriate services.
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.
navigate both healthcare and the educational system to find a diagnosis and
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.
105
Annotation 6
among fathers, mothers and pediatricians about unmet needs of children with
Study Focus: The purpose of the study was to: "determine the extent and
the unmet needs of particular children with chronic health conditions and their
families and to investigate the factors associated with greater or lesser disparity
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
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
with respiratory condition only (i.e. asthma, otitis media), neurologic condition
only (i.e. cerebral palsy, seizure disorder, mental retardation), children with a
106
wide variety of other conditions such as diabetes, cardiac conditions and
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
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
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
parent's views and doctors. Doctors rated severity of illnesses as greater but the
107
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
conditions that impact the families the most. Pediatricians were unaware of how
counseling and were less likely to identify a need for care coordination.
information. Recommendations were made for families and their primary care
and monitoring a wide range of services for children with chronic health
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
108
Relevance to Project: In relation to my project the data from this research
children with chronic health conditions need and suggested that a mechanism
doctors about a family and child's long term needs" (p.283). As I plan my parent
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
project. I want my project to be well rounded and reflective of the needs of the
109
Annotation 7
study of parents' experiences, coping and needs, when the newborn child is
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.
disabled children, all interviewed (1.5-2 hours in duration) twice and audio-
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
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
110
resources. All data from the interviews was approved by the participants.
neonatal ward as well as the department of clinical genetics and the National
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,
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
problem focused such as collecting information, learning new skills and seeking
111
training as well as emotionally focused such as retaining hope, seeking social
support and creating future images. Under the theme identifying possibilities of
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
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
my doctoral project as did the five main themes of the study. Limitations: Items
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
112
of the study. The limitations of the study are important to take into account
which is easily understood. I need to make sure that the area of the state that I
services.
113
Annotation 8
Bailey, D. B., Hebbeler, K. P., Scarborough, A. P., Spiker, D. P., & and Mallik, S. P.
Study Focus: This purpose of this planned longitudinal study was to ascertain
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
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
114
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
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
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
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.
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
Relevance to Project: Only about 1.8% of children ages birth through age 2 and
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
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
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Annotation 9
McGill, P., Papachristoforou, E., & Cooper, V. (2005). Support for family carers of
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
complementary medicine they were also asked about how they received help in
this area. Parents were asked to rate helpfulness of professionals and parental
behavior. Eighty seven questionnaires were returned and 66 were used in the
study. Children in the study were diagnosed with an intellectual disability and
118
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
problem for 45% of the children. Families (53%) reported that psychotropic
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
manage challenging behavior with 9% reporting this was helpful to them. There
satisfaction and additional comments area of the questionnaire and they were:
119
respite provision, perception that professional staff and or services lacked
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.
children with serious challenging behavior are often not receiving helpful
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
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
experiences.
121
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.
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
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.
mode of communication and that written word was valued as a back up to what
122
was said rather than a primary source of information. The use of a home to
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
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
Critique: Strengths: Strengths in the findings of this study suggest that the
123
understand is positive and helpful/important for parents. For maximum impact a
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
possibly biased towards things that were important to interviewees rather than it
being comprehensive to cover all information sought and the findings are not
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
Relevance to Project: It was found in this study that parents wanted information
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
124
parent education classes I need to prepare my information for parents with the
125
Annotation 11
Blackburn, C , & Read, J. (2005). Using the internet? The experiences of parents of
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
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
well as the circumstances around caring for their child. Survey data were
Results: The majority of respondents were women (93%), over half (56%) were
not in paid employment and 75% lived in owner occupied accommodations. The
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
conditions. Parents (36%) also used the internet to make contact with
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
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
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
program. Research has offered "consistent evidence that the provision of crucial
form that they can use is an intractable problem" (Blackburn & Read, 2005). It is
129
Annotation 12
Olson, J., & Esdaile, S. (2000). Mothering young children with disabilities in a
307-314.
Study Focus: The purpose of this qualitative study was to examine mothering
Methods: Two single urban African American mothers in their mid 20's were
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
130
Results: An essential overarching theme was found of "What I got to do" with
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
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
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
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
mental health that is essential to child development and that they wanted the
caring for their child's everyday health needs and then finding the time and
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.
Occupational Therapy practice with children who have cerebral palsy and other
132
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).
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
133
Annotation 13
Study Focus: The author has a grown son with Duchenne Muscular Dystrophy
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 the late teens. The diagnosis of DMD presents parents with many challenges
Researchers have learned that many different coping mechanisms are used
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
were developed from the statements and responses made by the families as the
the tapes verbatim to allow for data analysis using grounded theory.
Results: From analysis, coping themes used by families emerged such as:
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,
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
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
sample, only one diagnosis utilized, the study only included boys and findings
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
136
Annotation 14
Paper focus: The purpose of this paper was to demonstrate how pediatricians are
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
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
families seek out services for at least 3 reasons. The 3 reasons are as follows:
using existing services and thirdly that, they want to be part of a group of people
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
through links with community resources, that social support for parents of
(p. 196-197). Family support plays a crucial role in promoting the positive
138
especially effective with families that have a low income. A few
should consider needs and resources of families, they should work to develop,
technical advice on health and safety aspects of services and should actively
Critique: Strengths: Strengths of this article were that there were definite
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
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
project. The limitations found in this article, could impact my ideas for my
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
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,
children and provide them with optimal health care" (p.978). This article was a
(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
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
and even at times don't pay for specialty services. An eligibility criterion is also
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
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
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
reimbursement and many people may want to perform the role" (p .979-980).
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
Relevance to Project: I can take the recommendations from this paper and
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
144
Appendix B: Informational Survey for parents (to be completed in June 2009)
Child(ren)
Diagnosis
Concerns
o Feeding therapy
o Nutrition services
o Other:
145
o Bureau of Special Medical Services
o Other:
o Medical provider
o Internet
o Friends
o Family
o Daycares
o Other:
o Region 4
146
Who referred you
for Area Agency
Services?
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
When creating groups are there any characteristics of others that you would
S Similarity in ethnicity?
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
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
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.
D The total # of requests in which Parent to Parent information & support was
149
• Community resource information was provided in 14,180 requests for
provided was about public HCF programs such as Medicaid, Waivers, SCHIP,
provided on public HCF increased from 2,011 in Jul- Sept 2003 quarter to 11,441
Financing:
(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
150
• Participation in 6,809 meetings attended by over 215,000 family members
and/or professionals
151
Appendix D: Class Outline
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)
following information:
class)
to appointments
152
• How to deal with wait times for appointments (if this is a
concern)
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.
153
Appendix E: Class Four Resources:
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
D If the recorded voice on the phone is confusing, often you can just stay
"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
154
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.
"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
155
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
Cell:
E-mail address:
Address:
Tel:
156
Health Insurance Information
Subscriber Name:
Policy #:
Family Information
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
157
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
services.
The Community Health Agencies are staffed with family physicians, nurse
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
Nine local community health agencies and ten community health centers
administer the Child Health Program (CHP). The CHP allows these health care
158
children through clinic and home visits. Services include physical exams, health
PORTSMOUTH AREA
159
MANCHESTER AREA
Community Health
29 Hazen Drive
Concord, NH 03301
160
Web: www.dhhs.state.nh.us/DHHS/WIC/default.htm
WIC Nutrition Services administers health and nutrition programs. The WIC
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.
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.
for both a mother and an infant as well as to provide resources and support to
(603) 271-3858
161
WARREN, LITTLETON, WOODSVILLE AND WHITEFIELD AREA
Mt. Moosilaukee Health Services
FRANKLIN AREA
NEWPORT AREA
162
BERLIN AREA
Coos County Family Health Center
Community Health
29 Hazen Drive
Concord, N H 03301
Web: www.dhhs.state.nh.us/DHHS/CLPPP/default.htm
The program is a resource for N H residents who need help addressing the
surveillance; provides medical case management and home inspections for lead-
poisoned children; and provides information and referral for reduction and
163
Immunization Program
29 Hazen Drive
Concord, N H 03301
Web: www.dhhs.state.nh.us/DHHS/IMMUNIZATION/default.htm
The program promotes immunization initiatives for children and adults to assure
Concord, NH 03301
Web: www.dhhs.state.nh.us/DHHS/SPECIALMEDSRVCS/default.htm
164
Special Medical Services provides medical care coordination and financial
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
eligible.
NH Healthy Kids
Concord, N H 03301
Telephone: 1-877-464-2447
Web: www.nhhealthykids.org
Hampshire children. Healthy Kids (HK) premiums are based on family size and
and unearned income such as child support, alimony, Social Security Disability
165
(SSDI), other Social Security payments, unemployment, Veteran's, or Worker's
Adult Day Care so you can work, Court-Ordered Child Spousal Support or
Wage Garnishment.
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
166
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
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,
167
excluding maternity services, at a monthly cost per child. There are income
• 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.
168
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
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
169
substantial gainful activity for 48 consecutive months as a result of the
impairment.
In July, 2007 the N H Legislature passed the "Dependent Care Expansion" that
D is unmarried
education, and
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).
170
The New Hampshire Insurance Department
Consumer Division
Concord, N H 03301
Web: www.nh,gov/insurance
Health Plans; Medical Savings Accounts (MSA); IRS information on MS As; Short
Long-Term Care Insurance; Small Group Health Plans (1-50) as well as legal
Telephone: (800) 852-3345 x3986 or (603) 271-3986 / TDD Number: (800) 735-2964
Web: www.dhhs.state.nh.us/DHHS/MHO/default.htm
171
Eligibility for services provided by DHHS Minority Health Office is based upon
Manchester, N H 03105
Web: www.nhhealthequity.org
in their own health care. Services include educational programs, home visiting,
Manchester, N H 03103
172
Web: www.iiboston.org/imh.htm
and provides the resources, guidance, and educational opportunities that enable
new Americans. All IINH services are offered free of charge, except certain legal
NH Refugee Program
Concord, N H 03301-8519
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
173
Latin American Center
Manchester, N H 03104
Programs include:
(ESL) classes;
D Parenting classes;
ALPHA Youth Services provides middle and high school youth with academic
tutoring, resiliency training, computer skills, counseling life skills training, and
174
Translators / Interpreters
Concord, NH 03301
Web:
http://www.ed.state.nh.us/education/doe/organization/instruction/ESOL/transdir
ectory.htm
translators/interpreters by language.
Concord, NH 03301.
175
Fax: (603) 224-5473
Web: www.lcsnne.org/languagebank.html
less than 48 hours, fax form and call for confirmation. The fee is $45 per hour
Concord, N H 03301
Web: www.nhfv.org
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
176
D Technical assistance with health care insurance and healthcare financing
• Lending library of books, videos, and audio tapes with a specialty in children's
social issues
Partners In Health
Lebanon, N H 03756
Web: www.nhpih.dartmouth.edu
children with chronic health conditions in NH. They work with schools, medical
setting that will enhance the quality of life of families. They serve families with
177
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 1
Gorham, N H 03581
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Region and Towns Served Partners In Health
REGION 2
Langdon, Lempster,
Claremont, NH 03743
Web: www.pathwaysnh.org
REGION 3
Tilton, Wentworth.
179
Community Health and Hospice
Laconia, NH 03246
Web: www.chhnh.org
REGION 4
Community Bridges
Bow, NH 03304
Web: www.communitybridgesnh.org
180
REGION 5
Keene, N H 03431
Web: www.mds-nh.org/
REGION 6
181
Gateways Community Services Inc.
Nashua, NH 03064
Web: www.region6.com
REGION 7
Boston
Manchester, NH 03101
Web: www.manchestervna.org/
182
REGION 8
Portsmouth, NH 03801
Web: www.familiesfirstseacoast.org/
REGION 9
183
Community Partners
Dover, NH 03820
Web: www.dssc9.org/
REGION 10
Nashua, NH 03064
Web: www.region6.com
184
REGION 11
PO Box 2800
Conway, NN 03818
REGION 12
Lebanon, NH 03756
Web: http://hoodcenter.dartmouth.edu/
185
Council for Children & Adolescents with Chronic Health Conditions
Concord, N H 03301
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
family-based services and support. The Council works with state and local
children and adolescents with chronic health conditions and provide support to
their families.
PO Box 3,
Cavendish, VT 05142
Web: www.cc-info.net
186
CCIN of Vermont and New Hampshire, is an independent, non profit
for those living in New Hampshire and Vermont who are affected by chronic
REGION 13
Woodstock.
Littleton, N H 03561
Web: www.ACHS@nchin.org
187
Community Health Resources
31 College Drive
Concord, N H 03301
Web: http://www.nhti.edu/campuscommunity/dentalclinic.htm
Low cost check-ups and general oral prophylaxes. NHTFs dental hygiene
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
11 Downing Court
Exeter, NH 03833
188
Web: www.seacarehealthservices.org
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.
Concord, N H 03301
Web: www.homecarenh.org
agencies that provide in-home health care and supportive services to individuals
high quality health care in the home by offering education and networking
issues, and serving as a home care advocate in the public policy arena.
189
Community Health Resources
1 Verney Drive
Greenfield, N H 03047
Web: www.crotchedmountain.org
Crotched Mountain offers a full range of clinical and rehabilitation services for
Lebanon, NH
190
Web: www.dhmc.org
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
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
preparation make a list of questions applicable to the care of your child. Some
191
• How do you handle people who are angry, stubborn, or fearful?
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
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
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
192
• Talk with other families who use in-home caregivers and learn from their
experiences.
Agency
Portsmouth, N H 03801
Web: www.bendahomecare.com
193
Nurses PRN, Inc.
Merrimack, NH 03054
Newport, N H 03773
Web: www.vrh.org
194
Home Health & Hospice Care - Merrimack
80 Continental Boulevard
Merrimack, N H 03054
Web: www.hhhc.org
High Tech Nursing, Personal Care, Private Duty, Psychiatric Nursing, Respite
Care
Concord, N H 03302
Web: www.crvna.org
195
Respite Care, Rehab Nursing, Psychiatric Nursing, Private Duty, Pediatric High
22 Prospect Street
Nashua, N H 03060
Web: www.hhhc.org
Respite Care, Psychiatric Nursing, Private Duty, Pediatric High Tech Nursing,
Keene, N H 03431
Web: www.hcsservices.org
196
Psychiatric Nursing, Private Duty, Pediatric High Tech Nursing, Homemaker,
Keene, N H 03431
Web: www.interimhealthcare.com/newhampshire
Respite Care, Rehab Nursing, Psychiatric Nursing, Private Duty, Pediatric High
Laconia, N H 03246
Web: www.interimhealthcare.com/newhampslTire
197
Respite Care, Rehab Nursing, Psychiatric Nursing, Private Duty, Pediatric High
PO Box 1780
Manchester, N H 03105
Web: www.interimhealthcare.com/newhampshire
Respite Care, Rehab Nursing, Psychiatric Nursing, Private Duty, Pediatric High
Nashua, N H 03060
Web: www.interimhealthcare.com/newhampshire
198
Respite Care, Rehab Nursing, Psychiatric Nursing, Private Duty, Pediatric High
Portsmouth, N H 03801
Web: www.interimhealthcare.com/newhampshire
Respite Care, Rehab Nursing, Psychiatric Nursing, Private Duty, Pediatric High
Web: www.interimhealthcare.com/newhampshire
199
Respite Care, Rehab Nursing, Psychiatric Nursing, Private Duty, Pediatric High
Web: www.lakesunapeevna.org
75 Chestnut Street
Franklin, NH 03235
Web: www.vnafnh.org
200
Pediatric High Tech Nursing, Respite Care, Respiratory Therapy, Rehab,
Milford, N H 03055
Web: www.souheganhhc.com
Respite Care, Respiratory Therapy, Rehab Nursing, Pediatric High Tech Nursing,
Visiting Nurse & Hospice Care Services of Northern Carroll County, Inc.
PO Box 432
46 Seavey Street
201
Web: www.thememorialhospital.org/visitingnurses.html
Manchester, N H 03104-2911
Web: www.manchestervna.org
Colebrook, N H 03576
202
Web: www.hitchcock.org/pages/dha/vcvh.html
PO Box 218
Web: www.LiveFreeHomeHealthCare.com
203
VNA and Hospice of VT and N H
05001
Web: www.vnanh.org
Health Aide
VNA/Hospice of Southern
PO Box 1620
Wolfeboro, N H 03894
Web: www.vnahospice.net
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Speech Therapy, Respite Care, Rehab Nursing, Psychiatric Nursing, Private
Health Aide
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
1 Verney Drive
Greenfield, N H 03047
Web: www.crotchedmountain.org
residential support services for children and adults with disabilities from New
Hampshire.
205
Residential Services: provides round-the-clock nursing care and medical
delay. Accepts children between the ages of 2 and 22 and who are medically
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
available.
Cedarcrest
91 Maple Avenue
Keene, N H 03431
Web: www.cedarcrest4kids.org
children from birth to age sixteen who have a variety of disabilities, including
206
Residential: Provides round-the-clock care for up to 26 children with complex
needs. This care is coordinated and supervised by the Medical Director and the
specialized medical care needed by the child as well as training for families
The following is a quick list of agencies, programs and organized groups that
here in NH.
AIDS / HIV
(603) 650-6060
207
Merrimack Valley Assistance Program
Web: www.mvap.org
(603) 226-0607
Web: www.aidstaskforcenh.org
(603) 595-8464
208
ALLERGIES / ASTHMA
Web: www.asthmaandallergies.org
(877) 2-ASTHMA
Web: www.breathenh.org
(603) 669-2411
ARTHRITIS
Web: www.arthritis.org
209
AUTISM
Web: www.nhautism,com
(603) 679-2424
Web: www.aane.org
(617) -393-3824
www.nhbvi.com
Impairments (NAPVI)
Web: www.spedex.com/napvi
(603) 432-2273
210
New Hampshire Association for the Blind
Web: www.sightcenter.com
BRAIN INJURY
Web: www.bianh.org
CANCER
Web: www.childhoodcancerlifeline.org
(603) 645-1489
Web: www.cancer.org
(603) 472-8899
211
CARDIAC
Web: www.americanheart.org
(603) 669-5833
CYSTIC FIBROSIS
Web: www.cff.org/Chapters/newengland
(603) 598-8191
Web: www.ndhhs.org
(800) 492-0407
Web: www.hearinnh.org
(603) 624-4464
212
DIABETES
Web: www.jdrf.org/newhampshire
(603) 222-2300
Web: www.diabetes.org
(603) 627-9579
DOWN SYNDROME
Web: http://nnedsc.org
(603) 622-6904
DWARFISM
Web: www.lpadl.org
213
FRAGILE X
Web: www.fragilex.org/html/newhampshire.htm
(603) 329-4632
HEMOPHILIA
Web: www.newenglandhemophilia.org
(781) 326-7645
LIVER
Web: www.liverfoundation.org/chapters/newengland
MENTAL HEALTH
Web: www.naminh.org
(800) 242-6264
214
MITOCHONDRIAL
Marcel's Way-
Website: http://www.marcelsway.org
MULTIPLE SCLEROSIS
Web: www.nationalmssociety.org
(800) 493-9255
MUSCULAR DYSTROPHY
Web: www.mdausa.org
(603) 471-2722
Web: http://members.aol.com/pwsane
(508) 478-2065
215
RETINOBLASTOMA
Web: www.spedex.com/napvi
(800) 562-6265
Web: www.nhspinal.org
(603) 216-3120
TOURETTE SYNDROME
Web: www.tsa-maine.org
216
NH Department of Health and Human Services (NHDHHS)
RSA 126-A: 4
Department Established
citizens. The majority of the people who use programs and services have
multiple needs and require services from more than one program. DHHS is
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
support services, medical assistance, food assistance and child support services.
217
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
Glencliff Home for the Elderly, New Hampshire's Acute Care Psychiatric Facility
both public and private. Local contractors complement and expand DHHS'
Web: www.dhlis.state.nh.us
NHDHHS
Twelve DHHS "field" offices, called District Offices (DO), provide a single point
for individuals and families to access DHHS services within their own
individuals and families for a wide array of programs and services. Programs
child support enforcement, nursing home care and long term care, protective
218
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
Berlin, N H 03570
Claremont Office
Claremont, NH 03743
Concord Office
Concord, N H 03301
219
Main Number: (603) 271-6200
Conway Office
73 Hobbs Street
Conway, N H 03818
Keene Office
Keene, NH 03431
Laconia Office
65 Beacon Street W.
Laconia, N H 03246
220
Toll Free Number: (800) 322-2121
Littleton Office
80 N. Littleton Road
Littleton, NH 03561
Manchester Office
Manchester, N H 03102
221
The Ombudsman Office assists clients, employees and members of the public to
D Medicaid services
• Regulatory problems
• Administrative decisions
• Employee concerns
services.
222
Nashua Office
19 Chestnut Street
Nashua, N H 03060
Portsmouth Office
Portsmouth, N H 03801
Rochester Office
Rochester, N H 03867
Salem, N H 03079
Concord, N H 03301
The Division of Family Assistance (DFA) administers programs and services for
assistance, help with child care costs, and emergency help to obtain and keep
safe housing. Family assistance staff helps to determine initial and continuing
224
federal and N H guidelines and policies. There are seven major types of
These services are accessed through the DHHS District Office (DO).
• Cash Assistance is provided through DFA in two general program areas, the
divided into two programs, the NH Employment Program (NHEP) and the
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
• Food and Nutritional Assistance assists individuals and families through the
children, pregnant women and families through the Medicaid and N H Healthy
Kids Programs. DFA determines eligibility for medical coverage and works
225
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
qualify for TANF in obtaining and keeping safe and healthy permanent housing.
required deductibles.
assistance is issued twice per month via Electronic Funds Transfer (EFT) or
226
Electronic Benefits Transfer (EBT). Cash assistance issued via EFT is deposited
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
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)
Concord, N H 03301-3857
Web: www.dhhs.state.nh.us/DHHS/MEDICAIDPROGRAM/default.htm
The Medicaid program is a federal and state funded program that serves
individuals and families who meet financial and /or other eligibility
227
medical eligibility when it is required. The program provides payment for
medical services ranging from routine preventive medical care for children to
Some of the specific medical services covered by the Medicaid program include
hospital, physician, nursing facility, home health, lab, x-ray, family planning,
EPSDT (early, periodic, screening and diagnostic testing), newborn home visits,
audiology, nursing facility, home and community based care for the elderly. The
health centers.
228
Targeted Health Services
dental care, treating illness early and managing chronic health conditions.
whose medical disability meets SSI eligibility criteria for children and be
• Home and Community Based Care for Acquired Brain Disorders (HCBC-
institutionalization.
229
institutionalization. Developmental disability determinations for eligibility for
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.
Office of Community & Public Health Bureau of Maternal & Child Health
29 Hazen Drive
Concord, N H 03301
Web: www.dhhs.state.nh.us/DHHS/BMCH/default.htm
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.
230
BMCH staff develops program guidelines based on best practices and monitor
support and resources to family and care providers of infants suspected to have
died of SIDS.
throughout N H for children ages 3 1/2 to 6 years old and provides referrals and
follow-up.
Concord, N H 03301
231
Telephone: (800) 852-3345 X4451 or (603) 271-4451
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.
The Bureau of Child Protection works to protect children from abuse and neglect
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
232
Adoption: Telephone: (800) 852-3345 X4707 or (603) 271-4707
children whose parents' parental rights have been terminated. Children are
assessed for potential adoption and adoptive parents are recruited, trained and
centers are located in each DHHS District Office (DO) to help identify domestic
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.
233
Child Welfare Resources
PO Box 2802
Concord, N H 03302
Web: www.nhfapa.org
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
Manchester Headquarters
Web: www.cfsnh.org
234
Child and Family Services is an independent nonprofit agency dedicated to
children.
Concord, N H 03301
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
adoption, family reunification, preservation and advocacy and other services for
families and children. Casey Family Services has also established innovative
the healthy, nurturing environments their children need to grow and thrive.
235
Casey Family Services Casey Family Services Resource Center
Concord, N H 03301
Web: www.lssne.org/aboutus.html
Lutheran Social Services of New England Offers the following programs here in
NH.
236
NH Catholic Charities
PO Box 686
Manchester, N H 03105-0686
Web: www.catholiccharitiesnh.org
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
Web: www.familystrength.org
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
Dover, N H 03820
Manchester, N H 03101
Keene, N H 03431
Claremont, N H 03743
238
72 West Broadway
Derry, NH 03038
Gorham, N H 03581
Children's Alliance of NH
2 Greenwood Avenue
Concord, N H 03301
Web: www.childrennh.org
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
system offers its consumers with developmental disabilities and acquired brain
disorders a wide range of supports and services within their own communities.
specialized service agencies that represent specific geographic regions of NH; the
with contractual agreements between DDS and the Area Agencies. Supports
include service coordination, day and vocational services, personal care services,
modifications. Funding for supports and services for people with developmental
mechanisms: the Medicaid Home and Community Based Care Waiver and funds
240
Home and Community Based Care Waivers. The Home and Community Based
Home and Community Based Care For Individuals with Acquired Brain
Concord, N H 03301-3857
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
241
Family Resource Centers
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
27 Burns Avenue
Concord, N H 03301
Web: www.thechildrensplacenh.org
14 Canterbury Road
Concord, N H 03301
242
Telephone: (603) 225-0830
Web: www.concord.kl2.nh.us/comm/dam/dame.html
Portsmouth, N H 03801
Web: www.familiesfirstseacoast.org
4 Lake Street
Nashua, NH 03060
Web: www.adultlearningcenter.org
Gorham, N H 03581
243
Web: www.frcberlin-gorham.org
43 Main Street
Antrim, N H 03440
23 Atkinson Street
Dover, NH 03820
Web: www.hubfamilies.org/
Lakes Regional Community Services Council Giggles and Grins Family Resource
Center
67 Communications Drive
Laconia, N H 03247
244
Child & Family Services
99 Hanover Street
Manchester, N H 03105
Web: www.cfsnh.org
61 Route 27/107
Raymond, N H 03077
36 Tsienneto Road
Derry, N H 03038
Web: www.urteachers.org
White Birch Community Center
9 Hall Avenue
Henniker, N H 03242
Web: www.whitebirchcommunitycenter.org
70 Pembroke Road
Concord, N H 03302
Web: www.riverbendcmhc.org
Laconia, N H 03246
246
Good Beginnings of Sullivan County
Claremont, N H 03743
Telephone: 542-1848
Web: http://sullivancounty.goodbeginnings.net/
64 Main Street
Keene, N H 03431
Web: www.mfs.org/
Peterborough, N H 03458
Web: www.thefamilycenter.us
247
Wolfeboro Area Children's Center
Wolfeboro, N H 03894
Web: www.wolfeborochildren.org/
Plymouth, NH 03264
Web: www.wholevillage.net
Franklin, NH 03235
248
VNA Community Services
Manchester, N H 03101
Web: www.manchestervna.org
20 Park Street
Concord, NH 03301
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
Web: www.snsc-uv.org
Web: www.parenttoparentnh.org
249
Offers parent to parent matches, information and referral, and training.
NH Family Voices
Concord, NH 03301
Web: www.nhfv.org
supports for families having children with special health care needs.
Concord, N H 03302-2405
Web: www.parentinformationcenter.org
with disabilities.
250
Upper Valley Fatherhood Network
W. Lebanon, N H 03784
Serving men in the Upper Valley, the Fatherhood Network has individual
Manchester, N H 03103
The Easter Seals Autism Network Family Support Program offers the following
251
Child and Family Services
99 Hanover Street
Manchester, N H 03105
Web: www.cfsnh.org
Connecting Family Skills. This program offers emotional support and practical
resourcefulness. There is no fee for this support. Offered through the following
offices:
252
Child and Family Services, Littleton
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
practice.
20 Park Street
Concord, N H 03301
Web: www.nh,gov/nhsl/frc
253
Services and Family & Youth Development Calendar listing statewide
workshops, classes, conferences and other events for professionals and families
254
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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
CERTIFICATIONS
260
EMPLOYMENT HISTORY
Pediatrics:
January 2009-Present
Staff Occupational Therapist (contracted position through Clark Associates)
Nashua School District, Nashua, N H
December 2008-Present
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
Easter Seals New Hampshire - The Family Place Sensory Integration Clinic,
Raymond, N H
262
Tuly 2003-Febmary 2005
Occupational Therapist (covered maternity leave and then became staff member)
Consortium, Amherst, N H
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
Medical Rehabilitation:
Tune 2006-Present
Staff Occupational Therapist (per diem)
Southern New Hampshire Medical Center Inpatient and Outpatient
Departments, Nashua, NH
265
PROFESSIONAL MEMBERSHIPS
SKILL
266