NEW! Links Digest
- 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 125 October 2012
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 Care Reform Implementation
Learn how the Affordable Care Act is making a difference for the people of New York:
States continue to move forward in building Affordable Insurance Exchanges. This link from the Department of Health and Human Services provides a brief overview of the purpose of the Exchanges and provides links to further information:
Information specific to New York Stateâs use of federal funding to support the development of an Exchange can be found here:
Medicaid Redesign in NYS
Follow updates on New York Stateâs Medicaid 1115 Waiver Amendment request here:
The Care Management for All initiative seeks to move virtually all NYS Medicaid enrollees to a care management model by April of 2016. A one-page overview of this initiative can be found here:
More detailed information about the draft Care Management for All transition timeline for specific programs can be found in this Excel spreadsheet (open the Population Chart tab at the bottom and then scroll to Section H which is at line 34, People Transitioning to Managed Care Based on Timeline):
1.Advocacy 101 â" items that help strengthen advocacy skills â"
(Communication skills, parenting skills, letter writing, speaking with professionals, asking questions)
In this blog entry from Child-Psych.org, the author discusses a 2010 article from the journal Pediatrics which documents the prevalence of anxiety and depression in children with special health care needs:
This article by developmental pediatrician Dr. Mark Bertin demystifies the ADHD evaluation and diagnosis:
2. Financing issues â" health insurance and other ways to finance the costs of needed services (including grievances, denials and appeals â" i.e. Strategies for Appealing Health Plan Decisions)
If you are uninsured in New York State, Community Health Advocates (CHA) can assist you in finding health insurance that best suits your needs. A CHA advocate will work with you to determine your eligibility and options for various public, subsidized or commercial insurance, as well as help you enroll into a plan of your choosing:
The article âWhat If Your Health Insurance Doesn't Cover a Test or Procedure? What Can You Do?â offers practical suggestions regarding how to obtain coverage:
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?)
On this webpage, the New York State Department of Education answers âFrequently Asked Questions About Roles and Responsibilities in Relation to Nursing Procedures and Health-Related Activities for All Children in the School Settingâ:
âAccommodating Children with Special Dietary Needs in the School Nutrition Programsâ"Guidance for School Food Service Staffâ is written by the US Department of Agriculture Food and Nutrition Service. It provides information regarding the regulations that govern the responsibilities of a school to meet specific dietary needs during the school day:
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 National Military Family Association offers information about services provided through the EFMP (Exceptional Family Member Program). Military families raising children with special education or health care needs benefit by having those needs considered during relocation assignments and may be able to receive additional support services:
The National Center on Health, Physical Activity and Disability offers a wide range of resources to support active, healthy lifestyles for people with disabilities:
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?)
When encouraged to allow her daughter to become more independent in managing health care needs, this family leader from Massachusetts was hesitant. She shares the story of how one âbaby stepâ suggestion helped set her on the path to preparing her daughter for a smooth transition:
eHow.com offers âWhat Are Some Ways to Respect Cultural Diversity?â
6. Keeping Records is a learned skill. Parents will learn what kinds of records are important and how to record necessary information. Your childâs health care providers rely on your records to help them make sound medical recommendations.
The Health Passport offers valuable information to health professionals, including a brief medical history, communication strategies, and tips for what works best in providing daily support and care. It has been designed to encourage completion by the person who will be receiving care whenever possible:
Your family health history can help your health care practitioner provide better care. If a higher risk for a disease is noted, your practitioner can recommend actions for reducing risk and monitor closely for early warning signs. Use this tool to document family history; Thanksgiving is a great time to have the conversation:
Available in English, Spanish, Portuguese, and Italian
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 âmedical homeâ and how can parents access it for their child with special health needs?
This YouTube video demonstrates how to navigate the National Center for Medical Home Implementation website:
The University of Minnesota website offers tips on how to communicate with your physician:
8. Understanding Medicaid funded Waiver Services (Including the philosophy of individual and family-centered supports)
Looking for a particular service or support? Check out the Provider Directory at OPWDD that allows you to select specific supports and your county for more information:
A summary of the eligibility determination process for OPWDD services, updated October 2, 2012:
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 Empire Justice Center explains your legal rights as an applicant for public benefits:
The Empire Justice Center also provides this compilation of resources regarding the eligibility of immigrants for public benefits and programs:
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 internet has become a frequently used source of medical information. Help young people learn how to evaluate the quality, accuracy, and validity of web-based information with this helpful list of strategies from the University of North Carolina at Asheville:
What is self-advocacy? This article from LD OnLine defines the term and offers several tips for supporting the development of self-advocacy skills:
11. Fathers â" from Jim Swart, Fathers Network Coordinator
Papas of Preemies is a blog that shares the experiences and perspectives of fathers raising children born prematurely:
An interesting look at the popularly held belief that 85% of marriages between parents of children with disabilities end in divorce; the article suggests available data does not support this figure and the underlying premise is misleading in suggesting that a childâs disability causes divorce. The article also includes data which suggests fathers of children with disabilities are actually more involved with their children when compared to fathers of children without disabilities:
12. Other Links:
The webcast of the 2012 National Forum on Disability Issues, held in Ohio on September 28th, has been archived for viewing and transcribed. A non-partisan event, the Forum focuses on the disability positions of the 2012 Presidential candidates. Edward M. âTedâ Kennedy, Jr. and Rep. Cathy McMorris Rodgers (R-WA) spoke on behalf of their respective parties to present their campaignsâ positions on matters relating to Americans with disabilities:
New Yorkers can check if their voter registration is still active, be directed to their polling place, and verify which Congressional, Senate, and Assembly District they reside in via the link below:
â Have you found valuable links that you would like to share?
Please send them to Michele Juda at f2fhealthtools@...
â If you would like to speak to someone regarding your child with special health care needs, contact Michele at the above-referenced number.
â Would you like to speak to Jim Swart, Regional Coordinator supporting our Fathers Network? Call 1-800-305-8817 or email jmswart1@...
â our website at www.parenttoparentnys.org