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Parent to ParentWhen parents feel that no one else understands what they are facing... Parent to Parent Can Help. http://www.parenttoparentnys.org/ Parent to Parent of NYS -- a place where families of individuals with special needs and the professionals who support them can meet and share information. Parent to Parent of NYS New York's Family to Family 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 California Healthline’s Road to Reform feature offers “Four Rules and Regs Health Policy Experts Can’t Wait to Read”. It discusses policy issues related to state health insurance exchanges, minimum essential benefits, accountable care organizations, and meaningful use of certified electronic health records: The Public Policy and Education Fund of New York has issued a report that advocates strong consumer representation and protections in the creation and implementation of New York’s health insurance exchange. The report, entitled “A New Pro-Consumer Health Care System: Enforcing the New Federal Health Care Law in New York State”, can be found here: http://ppefny.org/2011/01/new-report-calls-for-a-pro-consumer-health-system/794 Medicaid Redesign in NYS The Managed Long Term Care Implementation and Waiver Redesign Work Group has been convened. Information regarding the group’s membership and their work is available here. The webpage includes a link through which suggestions and feedback can be submitted to the group: http://www.health.state.ny.us/health_care/medicaid/redesign/managed_ltc_workgroup.htm
http://www.ins.state.ny.us/mif_indx.htm 1.
Advocacy 101 – items
that help strengthen advocacy skills – Ten Questions to Ask the Doctor After a Diagnosis: http://specialchildren.about.com/od/gettingadiagnosis/tp/10questions.htm Students are an important member of the Committee on Special Education team. This article provides tips for preparing your child to advocate for themselves at IEP meetings: http://www.specialeducationadvisor.com/self-advocacy-for-special-needs-students/ 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) SSI beneficiaries are often concerned about losing Medicaid benefits if they elect to work. Section 1619 (b) of the Social Security Act offers some protections in this situation. Beneficiaries who would qualify for continued Medicaid eligibility are identified here: http://www.socialsecurity.gov/disabilityresearch/wi/1619b.htm From the NYS Department of Health, regulations regarding Prior Approval for durable medical equipment (DME), prosthetic, orthotic and supply items for those eligible for both Medicare and Medicaid: https://www.emedny.org/providermanuals/DME/PDFS/Prior_Approval_Process_12_29_2008.pdf 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?) How is Other Health Impairment (OHI) defined? This fact sheet from the National Dissemination Center for Children with Disabilities explains: http://nichcy.org/disability/specific/ohi The American Academy of Children & Adolescent Psychiatry offers an overview of IDEA, Section 504, the ADA and the steps parents can take to assure their child receives appropriate services: Click here 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 Institutes of Health Undiagnosed Diseases Program has temporarily stopped accepting applications: http://rarediseases.info.nih.gov/Resources.aspx?PageID=31
The Child Disability Starter Kit from the Social Security Administration answers questions about applying for SSI disability benefits on behalf of a child. The kit includes a worksheet to help you track the information necessary for the application as it is gathered: http://www.ssa.gov/applyfordisability/child.htm 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?)
This article from About.com discusses the emotions that may be experienced when waiting for a diagnosis: http://rarediseases.about.com/od/isitrare/a/waitingdiagnosis.htm
This article shares how one Mom concluded that sharing her 8 year old son’s diagnosis of Aspergers Syndrome with him was the best decision for their family: http://www.wrongplanet.net/article403.html 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. “Housecleaning? Please Don’t Pitch These Records”, an informative article from the Special Needs Alliance, discusses what records to keep, for how long and why: http://specialneedsalliance.com/the-voice/4/8 From Kids As Self-Advocates (KASA)—Keeping Track of Your Health Care Information: http://fvkasa.org/resources/files/health-track.php 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? What is culturally effective pediatric care? The American Academy of Pediatrics explains: http://practice.aap.org/content.aspx?aid=2992 The Commission on the Public’s Health System issued the report “Culturally Competent Care: Some Examples of What Works” after interviews and site visits with both those who receive and provide care in NYC’s health system: http://www.cphsnyc.org/cphs/reports/august_2010-_culturally_competen/ 8. Understanding Medicaid funded Waiver Services (Including the philosophy of individual and family-centered supports) The impact of health care reform on improving access to home and community- based services for those with long-term health care needs is explained in this Families USA brief. As a point of reference, NYS has indicated that they intend to pursue the Community First Choice option: http://www.familiesusa.org/assets/pdfs/health-reform/help-with-long-term-health-needs.pdf The Olmstead decision held that the ADA requires public entities to provide community-based services to persons with disabilities when such services are appropriate; the affected persons do not oppose community-based treatment; and community-based services can be reasonably accommodated. The Justice Department’s Civil Rights Division recently released a technical assistance document detailing rights and obligations under the integration mandate of the ADA and the 1999 Olmstead decision. Additionally, the Department’s ADA website now has a section dedicated to information and resources regarding the Olmstead decision and its enforcement, including state-specific information. The Press Release announcing these new resources can be found here: http://www.justice.gov/opa/pr/2011/June/11-crt-827.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? There is a wide range of assistive technology (AT) services and devices to which a child may be entitled. The Family Center on Technology and Disability provides a brief overview of Federal laws that impact the provision of assistive technology and special education services: http://www.fctd.info/factsheet/atlaws In May of 2011, the U.S. Department of Education's Office for Civil Rights issued guidance to elementary and secondary schools and institutions of higher education on the legal obligation to provide students with disabilities an equal opportunity to enjoy the benefits of technology: 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 Association of Maternal and Child Health Programs (AMCHP), offers this summary and analysis of a report commissioned by Got Transition, the National Health Care Transition Center, entitled “Health Care Transition for Youth with Special Health Care Needs”. The report examines state and national performance on transition planning: http://publish.amchp.org/AboutAMCHP/Newsletters/Pulse/May2011/Pages/Feature4.aspx The full report is available on the Got Transition website: http://www.gottransition.org/UploadedFiles/Files/GT_report_rev2.pdf The Health Care Transition Initiative of the Institute for Child Health Policy at the University of Florida offers three age-linked planning guides in both English and Spanish. The guides are designed to help parents and youth look at future goals, assess the teen’s level of independence on key health related activities, identify what parents are doing to support the teen’s autonomy in self-care, and develop a plan to transition from pediatric to adult-oriented health care: English Planning Guides:
Ages 12-14 |
Ages 15-17 |
Ages 18+ 11. Fathers – from Jim Swart, Fathers Network Coordinator A Dad shares lessons learned by being a special needs father in “An Ode to Fathers: Those Who Have Special Needs Children and Those Who’ve Lost One”: http://stopseizuresnow.blogspot.com/2011/06/ode-to-fathers-those-who-have-special.html Long Island father, Michael Casano shares how community connections and good communication with his spouse have helped him meet the challenges of parenting a special needs child: http://www.liparentonline.com/dads-corner/being-a-father-of-a-special-needs-child.html 12. Other Links: Clarence Sundram is the Governor’s Special Advisor on Vulnerable Persons. Per the Governor’s March 7, 2011 Press Release, Mr. Sundram’s responsibilities include the following: “Mr. Sundram will evaluate and provide recommendations to the Governor concerning State programs related to developmental disabilities, mental health, alcohol and substance abuse, children, and the elderly. As part of his duties, Mr. Sundram will evaluate the protection, safety, and quality of care of vulnerable persons, the conditions of related State operated and licensed facilities, and the fiscal performance of related programs. Mr. Sundram's initial task will be to review the operations of CQCAPD, which has monitoring and oversight responsibilities with respect to the quality of care and fiscal performance of programs and facilities operated or licensed by OPWDD, the Office of Mental Health (OMH), and the Office of Alcohol and Substance Abuse Services (OASAS).
Mr. Sundram will also coordinate with the Governor's Spending and Government Efficiency Commission (SAGE Commission) to evaluate and provide recommendations concerning the management, design, and structure of state agencies operating or overseeing programs or facilities for vulnerable persons.”
Mr. Sundram is currently drafting recommendations regarding effective safeguards for vulnerable populations in residential care. Anyone who would like to submit suggestions and/or recommendations is encouraged to use the following website to do so: http://governor.ny.gov/AdvisorVulnerablePersons From the Prevention Institute a series of Fact Sheets on the links between violence and chronic diseases, mental illness and poor learning: http://preventioninstitute.org/component/jlibrary/article/id-301/127.html
● Have you found valuable links that you would like to share? Please send them to Michele Juda at f2fhealthtools@verizon.net 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 jmswart1@verizon.net √ our website at www.parenttoparentnys.org Janice Fitzgerald, Executive Director,
Parent to Parent of NYS
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PO BOX 222; Baldwinsville, NY 13027 * Phone: (716) 276-2211 * (800) 442-1655 *
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