Parent to Parent of NYS

Parent to Parent of NYSNew York's Family to FamilyHealth Care Information and Education CenterLinks Digest- Volume 68 February 1, 2008As part of the Family to Family Health Care Information and EducationCenter, Parent to Parent of NYS has established the Links Digest to providelinks relevant to the issues of health care. Below is the most recentlisting of website links which we have found valuable and hope they will beof benefit to others.1. Advocacy 101 - items that help strengthen advocacy skills(Communication skills, parenting skills, letter writing, speaking withprofessionals, asking questions) Parenting skills: click on the links on the right side of the page to readon specific topics:http://www.parentingskill.info/The Pop-Up IEP is intended to help parents respond to school administratorswho can sometimes have priorities that are not clear to parents. As suchthese tools provide administrators with the information they need topetition local school boards for the funding necessary to help each childreach their full potential.http://www.unco.edu/ncssd/resources/popup.shtml 2. Financing issues - health insurance and other ways tofinance the costs of needed services (including grievances, denials andappeals - i.e. Strategies for Appealing Health Plan Decisions)Since 1999, New Yorkers have the legal ability to have an "external appeal"of their health insurer's denial of coverage in certain situations. Readmore here:http://www.ins.state.ny.us/extapp/extappqa.htm3. 504 Accommodation Plans related to Health Conditions (i.e.what are the legal obligations of schools to provide health-related servicesand therapies? Accommodations needed for equal access)When is a school district in violation of Section 504?http://www.slc.sevier.org/504adhd.htm 4. Who helps with what? Which state agencies are involved inhealth care and health coverage? What do medical and managed care termsmean? What should families look for in selecting a provider? Whatquestions should families ask?The distinction between managed care and medicaid managed care from the NYDepartment of Health:http://www.health.state.ny.us/health_care/managed_care/5. Parent-to-parent support skill-building (How can parentsprovide support and assistance to families without substituting theirjudgment? Understanding and respecting cultural diversity. How can parentsbe culturally competent in working with diverse families? How can parentsemotionally support, inform, and educate parents so that they are strong,knowledgeable, and confident in caring for their child with special healthneeds?)The basics of parent to parent support from NICHCY:http://www.nichcy.org/pubs/basicpar/bp2txt.htmThe Father's Network talks about working with culturally diverse families:http://www.fathersnetwork.org/644.html?page=644<http://www.fathersnetwork.org/644.html?page=644&SESSION=f54173ee2cc1a1c1ee0b3ef614ce0a3f&s=0> &SESSION=f54173ee2cc1a1c1ee0b3ef614ce0a3f&s=06. Keeping Records is a learned skill. Parents will learnwhat kinds of records are important and how to record necessary information.Your child's health care providers rely on your records to help them makesound medical recommendations. Are nutritional or digestive disorders a part of your child's medicalprofile? Read about keeping a "food diary":http://familydoctor.org/online/famdocen/home/healthy/food/general-nutrition/299.html7. Parent-professional collaboration strategies. How canfamilies work with their health care provider to secure quality care andcoverage for their child? How can health care providers and familiescommunicate more effectively? What are effective health advocacystrategies? What is a "medical home" and how can parents access it fortheir child with special health needs?A very detailed methodology for health care advocacy from Ohio Legal RightsService:http://olrs.ohio.gov/ASP/pub_PAIMILetsGetStarted.asp8. Understanding Medicaid funded Waiver Services (Includingthe philosophy of individual and family-centered supports)An article on the philosophy of family-centered care:http://findarticles.com/p/articles/mi_m0FSZ/is_6_26/ai_n186110029. Legal information - what are the rights of children tomedical coverage under Medicaid, SCHIP, fee-for-service coverage. How canfamilies use complaint, arbitration, and grievance procedures to resolvedisputes? What are the legal obligations of schools to providehealth-related services and therapies? January 22, 2008, SCHIP Veto holds: http://thehill.com/leading-the-news/bushs-schip-veto-holds-2007-10-18.html10. Transition from Pediatric to Adult Health Care and SelfDetermination in Health Care (the important leadership role that individualswith disabilities and their families must play in moving from pediatric toadult health care).Adolescent Health Transition Project-a site for transitioning children/youngadults with disabilities:http://depts.washington.edu/healthtr/11. Other Links and Information New York State Rehabilitation Association 2008 Legislative & PolicyAgendahttp://www.nyrehab.org/PDF/Legislative_Agenda_2008.pdfWhere do the presidential candidates stand on health care? Click on theappropriate spot in this matrix to find out:http://www.msnbc.msn.com/id/21116732/Cultural diversity and school re: children with special needs, a compilationof links:http://www4.oakland.edu/upload/docs/SEHS/Field%20Services/culturaldiversityK-12.docHave you found valuable links that you would like to share? Please send them to Lisa Terenzio at lisasdesk@verizon.net Phone: 1-631-434-6196 or 1-800-559-1729v our website at www.parenttoparentnys.orgJanice Fitzgerald, Executive DirectorParent to Parent of NYSP.O. Box 1296Tupper Lake, NY 12986Janice FitzgeraldParent to Parent of NYSP.O. Box 1296Tupper Lake, NY 12986www.parenttoparentnys.org518-359-3006Fax 518-359-2151"Nastiness comes from external sources that sabotage the environments orsupports a person needs to have access to their life-thereby making adifference disabling". (T.Abrams)