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Parent to Parent of NYS Parent to Parent of NYS New York's Family to Family Health Care Information and Education Center Links Digest- Volume 92 January 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. 1. Advocacy 101 – items that help strengthen advocacy skills – (Communication skills, parenting skills, letter writing, speaking with professionals, asking questions) Written by a parent, this article provides valuable tips for advocating within the health care system and partnering with professionals to assure you are heard: http://articles.complexchild.com/nov2009/00169.html Disability Scoop offers this “How-To” guide to Self-Advocacy: http://www.disabilityscoop.com/2009/07/21/self-advocacy/4203/ 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) If you are considering appealing insurance coverage denials there are several strategies that can bolster your case. An article from the Wall Street Journal offers some tips: http://online.wsj.com/article/SB122230334120773621.html This article provides practical guidance to those who are utilizing COBRA coverage on steps to take when the federal COBRA subsidy expires: http://www.nytimes.com/2009/12/12/health/12patient.html 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) © Parent to Parent of NYS January 1, 2010 1 This article from the American Society for Deaf Children examines IDEA regulations regarding the use of assistive devices, including cochlear implants: http://www.deafchildren.org/resources/31_What's%20the%20IDEA%20- %20AT.pdf ProjectIDEAL (Informing and Designing Education for all Learners) offers this tip sheet on accommodations and assistive technology that may be helpful to the student with an orthopedic disability. Guides for other disability categories are available as well: http://www.projectidealonline.org/orthopedicImpairments.php 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? Information on public and private funding sources available to help pay for or modify an accessible vehicle: http://projectaction.easterseals.com/site/DocServer/vehicle_funding.pdf?docID=10 203 Respite care is a service that offers temporary care for a child or adult with disabilities or chronic or terminal illnesses. The National Respite Locator Service helps parents, caregivers, and professionals find respite services in their state and local area to match their specific needs: http://chtop.org/ARCH/National-Respite-Locator.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?) “Of Geese and Community”—a reminder of the strength inherent in supporting each other: http://nysccc.org/advocacy/advocacy-basics/advocacy-tools-for-parent-groups/of- geese-and-community/ “Disability and Emotions”-- emotions have to be recognized and validated in order to best advocate for and support our children with exceptional challenges: http://ddpcmonthlyupdate.us/archive/2009/november/11_09_disability_emotions.php © Parent to Parent of NYS January 1, 2010 2 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. Medical Records 24/7 is a secure Internet "vault" for your family’s important medical records. There is a $19.95 annual charge for this service: http://www.medicalrecords247.org/ Learn More About Personal Health Records –A personal health record (PHR) is a confidential and easy-to-use tool for managing information about your health: http://www.medicare.gov/PHR/LearnMoreAboutPHR.asp#PHRWorkforme 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? This article discusses how Home Health Care Providers and the families they serve can partner together to create an Emergency Disaster Plan: http://www.dhs.gov/files/programs/gc_1221055966370.shtm “Talking With your Health Care Provider” is a group leader guide for providing practice in preparation for health care visits. It includes good tips on questions to ask and how to choose a health care provider: http://www.wvu.edu/~exten/infores/pubs/fypubs/436.wlg.pdf 8. Understanding Medicaid funded Waiver Services (Including the philosophy of individual and family-centered supports) This article details the origins of waiver programs for children with skilled nursing needs: http://www.specialneedsanswers.com/resources/article.asp?id=19059 This article explains the Circle of Support and offers tips on creating one: http://www.iidc.indiana.edu/irca/education/CircleSupport.html 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? © Parent to Parent of NYS January 1, 2010 3 This New York Times article looks at how the Children’s Health Insurance Program would be affected under health care reform legislation from both the Senate and the House: http://prescriptions.blogs.nytimes.com/2010/01/03/program-for-children-has- uncertain-future/ The National Health Law Program offers this Fact Sheet on Medicaid Early and Periodic Screening, Diagnosis and Treatment: http://www.healthlaw.org/images/stories/epsdt/3-ESDPT08.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). This article provides useful advice on how to help a young adult learn to access accommodations after high school: http://www.pacer.org/parent/php/php-c165.pdf This is a brief overview of an array of mechanisms available to address medical and financial decision-making once a child with special needs reaches 18, the age of legal capacity: http://www.specialneedsanswers.com/resources/article.asp?id=5468&section=4&st ate 11. Fathers – from Jim Swart, Fathers Network Coordinator Flame, a band comprised of musicians who happen to have a disability, recently were profiled on Good Morning America. You can find their inspirational story here: http://www.flametheband.com/news.cfm/article/82093 Music is good for the soul. It also is a great therapy for individuals who have a disability. Here is a story showing the wonderful things that music can do: http://www.america.gov/st/washfile- english/2007/December/20071212155612bcreklaw6.284732e-02.html 12. Other Links: This article describes the process for reporting a violation of IDEA (Individuals with Disabilities Education Act) to an official state agency: http://www.nichcy.org/EducateChildren/disputes/Pages/statecomplaint.aspx It is a New Year! Monica J. Foster offers “5 Disability New Year’s Resolutions”: http://www.bellaonline.com/articles/art65025.asp ● Have you found valuable links that you would like to share? Please send them to Michele Juda at [email protected] © Parent to Parent of NYS January 1, 2010 4 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 [email protected] √ our website at www.parenttoparentnys.org Parent to Parent of NYS is New York’s Affiliated Agency of Family Voices, Inc. © Parent to Parent of NYS January 1, 2010 5 Parent to Parent of NYS New York's Family to Family Health Care Information and Education Center Links Digest- Volume 93 February 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. Employment Listening Sessions The U.S. Department of Labor's (DOL) Office of Disability Employment Policy (ODEP) will hold a series of six Listening Sessions across the country on disability employment. Each Listening Session is an opportunity
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