From Parent to Parent-April Links Digest

Parent to Parent of NYS

New York’s Family to Family

Health Care Information and Education Center

Links Digest- Volume 83 April 1, 2009

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)

The Advocacy Institute is a non-profit organization dedicated to the development of products, projects and services that work to improve the lives of people with disabilities:

Parents as Collaborative Leaders: Improving Outcomes for Children with Disabilities, a national partnership between the University of Vermont, PACER Center, and several other parent and advocacy organizations, offers an on-line training entitled “Listening and Asking Clarifying Questions” (a free registration is required):

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)

ACCESS NYC is a free service that identifies and screens for over 30 City, State and Federal human service benefits programs (i.e. Medicaid, food stamps, school lunches, child care, etc):

Accessing Durable Medical Equipment (DME) with Managed Medicaid in NYS (Family Health Plus, Child Health Plus B):

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)

New York State Department of Health – Diabetes in Children – A Resource Guide for Schools (February 2008):

Here are two examples (one from Hawaii and one from North Carolina) of protocols used to meet the needs of children with swallowing difficulties and/or feeding tubes within the school environment:


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?

View a list of community organizations that can help you apply for Children’s Medicaid or Child Health Plus here:

This parent’s guide has valuable insight into the process of selecting a doctor, including questions families should ask:

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?)

In this article, “A Silent Epidemic: Health Illiteracy”, strategies for effective communication between medical providers and patients with limited literacy skills are discussed:

¡TradúceloAhora! (Translate Now!) can translate emails and websites from English to Spanish and Spanish to English thanks to technology powered by IBM. The user must be affiliated with a participating school or non-profit; the list of participating organizations is available on the registration page. Find a direct link here:

Another site for translation: Will translate text or websites to 41 languages.

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.

This article offers tips for letter writing and discusses the empowerment that results from effective record keeping:

10 myths about HIPAA (series of pages on the web):

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 American Society for Parental and Enteral Nutrition (A.S.P.E.N.) has released “Enteral Nutrition Practice Recommendations”, a document which culminated from the work of a task force assigned to gather expert opinion about both the safe use of enteral nutrition and best practices. A free PDF download is available here, as well as posters that can be used during hospitalizations to prevent errors:

Find tips for talking with your child’s doctors here (also available in Spanish):

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

The New York State Department of Health offers a program manual to provide information about the policies and procedures of the Nursing Home Transition and Diversion (NHTD) Medicaid Waiver:

From that program manual, a description of the rights and responsibilities of NHTD waiver participants:

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?

On October 3, 2008, the Paul Wellstone and Pete Domenici Mental Health Parity and Addiction Equity Act of 2008 was enacted. This law requires large employer groups (groups with more than 50 employees) that offer mental health and substance abuse disorder benefits to offer those benefits in full parity with the other medical benefits:

NYS had already enacted Timothy’s Law which provides broader protections than the Federal Law, but which is set to expire on December 31, 2009. The NYS Office of Mental Health explains the implications of this (scroll about half-way through the newsletter to find the article):

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).

This recent Boston Globe article discusses the difficulties of locating adult-care providers for children with disabilities:

Developed by the Illinois Chapter of the American Academy of Pediatrics this brochure provides teen transition facts for health care professionals:

11. Fathers – from Jim Swart, Fathers Network Coordinator

As spring arrives and the end of “cabin fever” comes with it we must remember that our children are also anxious to go out and enjoy the coming nice weather. A couple things to think about are how our children react to dining out and the planned family trips. Dads can take the lead on these subjects and be proactive in researching the needs of our children. has some tips for parents who have a child with special needs, please see the links below:

Dining out:

Family Trip planning:

12. Other Links:

The Catalyst Center’s latest publication,” Breaking the Link between Special Health Care Needs and Financial Hardship”, describes three distinct links between having a child with special needs and family financial hardship and provides examples of proven strategies and policy solutions to reduce or eliminate their impact:

New York Medicaid is implementing regional demonstration pilots that will test an interdisciplinary model of care to improve health care quality, ensure appropriate use of services, improve clinical outcomes, and reduce the cost of care for beneficiaries with medically complex conditions. The pilots will be based in New York City, Long Island (Nassau County), Capital District Region (Albany County), Western Region (Erie County), and Westchester County:

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

Please send them to Michele Juda at


● 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

√ our website at

Janice Fitzgerald, Executive Director, Parent to Parent of NYS

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


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