Parent to Parent of NYS

New York's Family to Family

Health Care Information and Education Center

Links Digest- Volume 79          December 1, 2008

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.


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

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


This checklist from the National Heart Lung and Blood Institute helps parents evaluate the safety of children with asthma within their child-care setting.  Useful resources are included for promoting a safe environment:


This article from the American Academy of Pediatrics discusses how parents can assist their children in coping with chronic illness/disability:


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)


Child’s Health Plus was expanded effective September 1, 2008 making more children eligible.  The charts on this link explain the income guidelines for both Child Health Plus and Children’s Medicaid:


Social Security Representative Payees can now submit their annual payee reporting forms online:



3.                504 Accommodation Plans related to Health Conditions (i.e. what are the legal obligations of schools to provide health-related services and therapies? Accommodations needed for equal access)

This link discusses how to create a “Teacher Information Packet” as a means of collaborating with the school regarding the care of your child.  Be sure to click the embedded link entitled “Preparing the School” for diagnosis specific information:


This information from Rutgers University provides a brief introduction regarding how the protections provided under IDEA, 504 plans, and the ADA apply (or don’t apply) in the college setting:


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?


Increasing numbers of children and adolescents are relying on government-sponsored dental insurance:


Social Security has unveiled the Compassionate Allowances Program which identifies 50 conditions that will qualify for expedited disability determinations:


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?)


This article provides tips for grandparents as to how to best support their family when a grandchild has a disability and/or special health care need:


Information regarding Social Security is provided in 15 languages through this link:


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.


A well-kept family health history provides useful information for health care providers.  Learn more about this tool and how to create a family health history here:


The U.S. Food and Drug Administration provides on online medication record here:


7.                Parent-professional collaboration strategies.  How can families work with their health care provider to secure quality care and coverage for 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 National Center on Birth Defects and Developmental Disabilities has introduced a campaign entitled:  “Learn the Signs.  Act Early.”  Their website has many useful tools regarding child development so that parents can be better informed and be prepared to engage the assistance of their doctor if necessary: 


The Family-Centered Care Self-Assessment Tool from Family Voices assists families to both understand the concept of family-centered care and assess how close their current care relationships come to this ideal:


8.                Understanding Medicaid funded Waiver Services (Including the philosophy of individual and family-centered supports)


Brief descriptions of the most commonly used Medicaid waivers in NYS:


Medicaid waivers are not entitlement programs.  This article explains the difference:


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?


Learn more about GINA, The Genetic Information Nondiscrimination Act here:


This site provides a listing of agencies that offer free legal services.  The user enters their location, language and area of legal concern to obtain a personalized listing of resources:


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).


An in-depth study of the issues concerning transitioning to adult services and supports for youths with mental illness, including several “best practices” from four states that have taken a lead in developing programs for this population:


This article from The National Alliance to Advance Adolescent Health discusses the current perspectives and practices of pediatricians regarding the transition of their adolescent patients with special health care needs to adult health care systems:


11.    Fathers – from Jim Swart, Fathers Network Coordinator


As the stress level rises in a family due to having a child with a disability our parenting skills are more important than ever to get us through whatever issue we are facing at the time. Many times we may need assistance in increasing our skill as a parent and find outside sources to do so. Please look at the links below as resources for this increased knowledge. Also look to your regional area for similar agencies that may provide this service.


Cornell University Cooperative Extension Parenting Classes


Northeast Parent and Child Society


12.    Other Links:


The holidays bring many opportunities to spend time with extended families and friends.  While this is usually joyful, issues related to a child’s disability can make this a stressful and difficult time.  These articles provide some useful tips:


Ø      Have you found valuable links that you would like to share?

Please send them to Michele Juda at



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


Ø      Would you like to speak to Jim Swart,  Regional Coordinator supporting our Fathers’ Network?  Call 1-800-305-8817 or email


√ our website at


Janice Fitzgerald, Executive Director, Parent to Parent of NYS

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