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 100 September 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

NY Bridge Plan—Temporary Coverage for those with Pre-Existing Conditions

New York State is now enrolling participants for the NY Bridge Plan. The Bridge Plan will provide temporary insurance for a limited number of legal NYS residents who have pre-existing conditions and have been without insurance for the last 6 months. The NY Bridge Plan will be in effect until health care exchanges become available in 2014.

The press release is available here:

The application and information regarding rates, coverage, and providers is available here in both English and Spanish:

Follow Health Care Reform Implementation in NYS

A website was recently launched that will provide up-to-date information about the implementation of health care reform in NYS, solicit public comment, and serve as a resource on available insurance options in New York:

Input Sought on How Health Care Reform is Affecting Families

Family Voices is partnering with researchers at Georgetown University to track how health reform is affecting families, and in particular, families who have children with special health care needs. If you are willing to help with this effort, more information is available here:

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

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

The Partners in Policymaking program provides an excellent opportunity for people with developmental disabilities, parents and family members to improve advocacy skills and to prepare to assume leadership roles in policymaking. The program is free of charge and for the first time ever in 2011 will be offered in an interactive distance learning format.

Learn more about the program here:

or to apply for the 2011 class (the application deadline is October 15th) visit here:

The University of Michigan offers this article regarding children with chronic health conditions. It includes information about the effects of chronic illness on children and their families and tips for coping:

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 Hearing Loss Association of America offers tips and resources on securing insurance coverage and/or financial assistance for hearing aides:

This report from CNN highlights medical billing statement danger zones which warrant careful attention:

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 United States Department of Agriculture provides several resources on accommodating special dietary needs within child nutrition programs, including school-based services:

The American Academy of Pediatrics offers these tips on what health information to share with your child’s school (if a registration screen pops up, hit “visitor” to view the page without registration):

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?

The American Academy of Pediatrics offers this question and answer guide on how to effectively use a managed care plan:

The following article provides some tips about choosing a pediatrician for a child with special needs:

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?)

The Commission on the Public’s Health System, with funding by the United Hospital Fund and in partnership with the Brooklyn Perinatal Network and The Bronx Health Link, recently released “Culturally Competent Care: Some Examples of What Works!” The publication can be downloaded from their home page:

Caregivers and Your Health: How to Manage Stress—tips from National Family Caregiver Association:

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.

Have you ever wondered what happens when HIPAA privacy rights are violated? These two web pages provide some insight:

and: offers an online medical dictionary:

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 following link from the Maternal & Child Health Bureau describes the six critical indicators of systems of care for CSHCN that are family-centered, community-based, coordinated and culturally competent:

Some medical home practices have implemented the use of a pre-visit interview. The interview assists parents in planning for a visit and also allows the office staff to be prepared in order to maximize the benefits of the appointment. A sample interview form is available here:

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

Champions for Inclusive Communities provides this primer on analyzing results from the National Survey of Children with Special Health Care Needs, specifically the results related to Outcome 5. Outcome 5 measures if services are organized so families can use them easily. Learn how the National Survey measures this desired outcome, view the national results, and learn how to compare state-specific data utilizing the tools available from the Data Resource Center for Child and Adolescent Health:

Learn about Family Support Services and the Family Support Consumer Councils here:

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?

In July, the US Department of Justice reached a settlement agreement with a private day care center in California regarding the provision of diabetes-related care to a student enrolled in their program. The complaint alleged violations of Title III of the Americans with Disabilities Act of 1990:

Dealing With treatment denials from Mental Health America:

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).

The Healthy Transitions website has a “Tools” section which provides a collection of publications related to transition planning from a variety of NYS organizations and government offices. Additionally, there are several checklists available that serve to both teach transition skills and support individuals in utilizing those skills in daily life:

The Office of Disability Employment Policy and the National Collaborative on Workforce and Disability offer two guides, one written for youth and one written for adults who advise youth, regarding the considerations involved when deciding if a disability should be disclosed and if so, how much to disclose:

11. Fathers – from Jim Swart, Fathers Network Coordinator

A story from The Autism News website regarding a martial arts studio that helps children with special needs enjoy the benefits of martial arts:

Lee Stagni, the father of a 21 year old daughter who has a rare metabolic disorder called Propionic Acidemia, has started a blog for fathers that chronicles his experiences and asks for input from other dads who have a child with a disability:

12. Other Links:

The Drug Enforcement Agency is hosting National Take-Back Day on Saturday, September 25, 2010 to provide an opportunity for the public to surrender expired, unwanted, or unused pharmaceutical controlled substances and other medications for destruction. For more information or to find a collection site near you visit:

Protect Tomorrow is a national education awareness campaign that reminds parents about the importance of childhood immunizations:

● 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