Parent to Parent of NYS

New York's Family to Family

Health Care Information and Education Center

And NYS Affiliate Organization of Family Voices

Links Digest- Volume 102 November 1, 2010

As part of the Family to Family Health Care Information and Education
Center, Parent to Parent of NYS has established the Links Digest to provide
links relevant to the issues of health care. Below is the most recent listing
of website links which we have found valuable and hope they will be of
benefit to others.

Health Reform Implementation

The Joint Center for Political and Economic Studies has issued a report detailing
how health care reform addresses the issue of racial disparities in health related
services and health care outcomes. The report entitled: “The Patient Protection
and Affordable Care Act of 2010: Advancing Health Equity for Racially and
Ethnically Diverse Populations” is available for download at no charge from their
website:
http://www.jointcenter.org/hpi/sites/all/files/PatientProtection_PREP_0.pdf

In 2014 under a provision of the Affordable Care Act, insurers will be required to
pay for “routine care” regardless of whether an insured is participating in a clinical
trial. This means that care that would have been covered under the health
insurance policy if the insured was participating in a standard treatment must be
covered even if they elect to enroll in a clinical trial. This applies to all clinical trials
that treat cancer or other life-threatening diseases:
http://www.cancer.gov/ncicancerbulletin/051810/page5

1. Advocacy 101 – items that help strengthen advocacy skills –

(Communication skills, parenting skills, letter writing, speaking with
professionals, asking questions)

Healthy Transitions offers a video on how to help someone with a developmental

disability prepare for surgery. The video, “Preparing for an Operation”, can be
found in the “Scheduling an Appointment” section on their video page:
http://www.healthytransitionsny.org/skills_media/video_show

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The following link provides information about preparing for a Social Security
disability benefits or SSI disability benefits hearing:
http://www.disabilitysecrets.com/disability-reflection-10.html

2. Financing issues – health insurance and other ways to finance

the costs of needed services (including grievances, denials and appeals –
i.e. Strategies for Appealing Health Plan Decisions)

The following article discusses various types of Managed Care Plans and their
impact on children’s’ health care. It includes a discussion of issues related to
access, quality of care, and cost:
http://education.stateuniversity.com/pages/2196/Managed-Care-Children.html

The Center for Medicare and Medicaid Services provides an overview of CHIP dental
coverage:
http://www.cms.gov/CHIPDentalCoverage/

3. Meeting health needs at school (i.e. What are the legal obligations of
schools to provide health-related services and therapies? What are 504
accommodations to assure equal access?)

The Oley Foundation has outlined the importance of having an Individual Health
Plan (IHP) for students with chronic health conditions. Although an IHP is not a
legal document, if it’s included in your Childs IEP or 504 Plan it becomes part of
that legal document. An IHP expands upon the health condition and how it relates
to the individual child:
http://www.oley.org/lifeline/IHP_IEP.html

New York State does not require schools to have a school nurse; however, if the
school hires a school nurse, NYS Education law requires that they must hire a
Registered Professional Nurse (RN). In this position statement, the NYS Association
of School Nurses advocates that Licensed Practical Nurses (LPNs) can also play a
valuable role under the supervision of a RN:
http://www.nysasn.org/LPNPositionStatement.pdf

4. Who helps with what? Which state agencies are involved in health
care and health coverage? What do medical and managed care terms
mean? What should families look for in selecting a provider? What
questions should families ask?

November is National Adoption Month. The NYS Citizens’ Coalition for Children
provides support, information and advocacy for foster and adoptive parents and
professionals in New York State, including those caring for children with
developmental disabilities and special health care needs:
www.nysccc.org

November is also a time to recognize military families. The National Defense

Authorization Act (NDAA) for Fiscal Year 2010 has expanded the Exceptional Family

© Parent to Parent of NYS November 1, 2010 2

Member Program (EFMP). This program identifies service members who have
family members with special medical or educational needs and determines whether
these needs can be met at a new location when the service member is being
considered for an assignment overseas. Under the expansion increased information
and referral services will be available and families moving within the states will also
be served:
http://blog.govdelivery.com/usodep/2010/07/department-of-defense-exceptional-
family-member-program.html

5. Parent-to-parent support skill-building (How can parents provide

support and assistance to families without substituting their judgment?
Understanding and respecting cultural diversity. How can parents be
culturally competent in working with diverse families? How can parents
emotionally support, inform, and educate parents so that they are strong,
knowledgeable, and confident in caring for their child with special health
needs?)

“Supporting Family Life for Children with Disabilities: What We Know and Don't
Know” discusses children with disabilities within the child welfare system,
specifically the difficulties in identifying and meeting their needs within the context
of families:
http://ici.umn.edu/products/impact/191/over2.html

Understanding cultural disparities and cultural diversity is important while providing

support and assistance to families. The following article provides some current
statistics and perspective on cultural disparities as it relates to family-centered
care:
http://esciencenews.com/articles/2010/05/19/study.finds.racial.ethnic.disparities.fa
mily.centered.care.kids.with.special.health.needs

6. Keeping Records is a learned skill. Parents will learn what kinds of

records are important and how to record necessary information. Your
child’s health care providers rely on your records to help them make sound
medical recommendations.

OpenNotes is a demonstration project started in the summer of 2010 which studies

the effect of increased transparency in the medical record. Approximately 100
physicians and 25,000 patients have agreed to share information electronically,
including electronic access to the medical record for 12 months. Learn more here:
http://www.myopennotes.org/

The Center for Children with Special needs at Seattle Children’s Hospital has a
variety of record keeping systems available, many of which help your child become
involved in the process:
http://cshcn.org/planning-record-keeping

7. Parent-professional collaboration strategies. How can families work

with their health care provider to secure quality care and coverage for

© Parent to Parent of NYS November 1, 2010 3

their child? How can health care provider and families communicate more
effectively? What are effective health advocacy strategies? What is
a “medical home” and how can parents access it for their child with special
health needs?

The following link provides some tips for communicating effectively with your child’s
health care providers:
http://www.medicalhomeportal.org/living-with-child/caring-for-children-with-
chronic-conditions/managing-and-coordinating-care/communication-guide

The following article talks about family-centered rounds which are designed to get
parents more involved in decisions about their child’s care during hospitalizations:
http://www.reuters.com/article/idUSTRE65R4A620100628

8. Understanding Medicaid funded Waiver Services (Including the

philosophy of individual and family-centered supports)

Changes in how Medicaid Service Coordination services are delivered to eligible

families took effect on October 1, 2010. OPWDD (Office for People with
Developmental Disabilities) provides information regarding the new program
framework and associated changes here:
http://www.omr.state.ny.us/images/hp_msc_framework.pdf

A comparison of Home and Community Based Services Waivers offered through the
Office of Mental Health, OPWDD, and the Bridges to Health program (for children in
foster care or under the supervision of the Division of Juvenile Justice and
Opportunities for Youth) is offered here:
http://www.ccf.state.ny.us/Initiatives/ChildPlan/cpResources/ComparisonOfWaivers
.pdf

9. Legal information - what are the rights of children to medical

coverage under Medicaid, SCHIP, fee-for-service coverage. How can
families use complaint, arbitration, and grievance procedures to resolve
disputes? What are the legal obligations of schools to provide health-
related services and therapies?

The Office of Mental Health offers this guide to patient rights for those who receive
outpatient mental health services:
http://www.omh.state.ny.us/omhweb/patientrights/outpatient.pdf

The Office of Mental Health offers this guide to patient rights for those who receive
inpatient mental health services:
http://www.omh.state.ny.us/omhweb/patientrights/InRtsWeb.pdf

10. Transition from Pediatric to Adult Health Care and Self Determination
in Health Care (the important leadership role that individuals with
disabilities and their families must play in moving from pediatric to adult
health care).

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"Embedding Health Outcomes in the Individualized Education Program" is a video
recording of a 40 minute teleconference that provides information and specific
examples of health related goals for an IEP. This recording is available, at no cost,
from the Wisconsin Department of Public Instruction web site:
http://dpimedia.wi.gov/main/Viewer/?peid=f44dfa70439241dd85e99cce0cb70e26

New Hampshire's Center for Medical Home Improvement has been awarded $1.3
million by the federal government to create a National Health Care Transition
Center for Youth with Special Health Care Needs. Mallory Cyr is working with the
center and shares some of her experiences in making the transition to adult care
providers and college as a young adult with chronic health issues here:
http://www.seacoastonline.com/articles/20100705-NEWS-7050328

11. Fathers – from Jim Swart, Fathers Network Coordinator

How does an MTV series fit into the world of disability? The “World of Jenks”, from
award-winning documentary filmmaker Andrew Jenks, tells the story of inspirational
strangers living their everyday lives. This episode focuses on Chad, a 20 year old
living with Autism. Jenks finds that autism is not what he thought it was and
witnesses the struggles Chad encounters everyday in order for people to
understand and accept him:
http://www.mtv.com/videos/world-of-jenks-ep-2-cant-make-me-
be/1647734/playlist.jhtml

What do you think about disability, sports and the fact that losing is part of sport?
One father thinks his child should be allowed to lose in a sport, just as any child
will:
http://www.parentdish.com/2010/05/13/opinion-disabled-children-should-be-
allowed-the-dignity-of-losi/

12. Other Links:

The following information may be of interest to families of children with IEPs.

Under a cooperative agreement with the U.S. Department of Education’s Office of
Special Education Programs (OSEP), Project Forum at the National Association of
State Directors of Special Education (NASDSE) surveyed all states to examine their
current practices regarding the implementation of standard-based IEPs. Standard-
based IEPS are developed around the framework of state grade-level academic
standards. A summary of what was learned in the study is available here. A total
of 41 states responded; NYS was one of 5 states that indicated they were not
using, implementing, or developing a standards-based IEP:
http://projectforum.org/docs/Standards-BasedIEP-ImplementationUpdate.pdf

The California Department of Developmental Services provides this guide to

adaptations, changes, and tools that can be used to support the participation of
those with developmental disabilities on boards and committees. Editor’s note: it
would have been preferable if the guide was entitled “Ways to Make Complex

© Parent to Parent of NYS November 1, 2010 5

Information Understandable”
http://www.dds.ca.gov/ConsumerCorner/WaysComplex.cfm

The Early Intervention Partners Training Project is scheduled to be held in Saratoga

Springs for the Northeast Region (Albany, Clinton, Columbia, Essex, Franklin,
Fulton, Greene, Hamilton, Montgomery, Otsego, Rensselaer, Saratoga,
Schenectady, Schoharie, St. Lawrence, Warren, and Washington counties). For
more information go to http://www.eifamilies.com/training.asp

● Have you found valuable links that you would like to share?
Please send them to Michele Juda at f2fhealthtools@verizon.net
1-800-305-8817

● If you would like to speak to someone regarding your child with special
health care needs, contact Michele at the above-referenced number.

● Would you like to speak to Jim Swart, Regional Coordinator supporting our
Fathers’ Network? Call 1-800-305-8817 or email jmswart1@verizon.net

√ our website at www.parenttoparentnys.org

Janice Fitzgerald, Executive Director, Parent to Parent of NYS

P.O. Box 1296, Tupper Lake, NY 12986

© Parent to Parent of NYS November 1, 2010 6