Our chapter puts together a resource directory that contains member recommendations of doctors, therapists, other professionals, and facilities who have been beneficial to our children with PWS. You can view the February 2004 edition of the directory on-line or download an MSWord version of the Resource Directory.
If you would like to add to our directory, send us the names of people and
organizations that you would recommend to others for services to a child or
adult with Prader-Willi syndrome. We are interested in knowing about medical
professionals and specialists of all kinds, therapists (PT, OT, SLP), education
and psychology professionals, work and residential providers, recreation and
camp programs, legal assistance, estate planning, and advocacy services.
On The Arc's national website there are informational materials on the federal Medicaid program to help people understand how it works, its significance for people with disabilities, and changes being contemplated in Washington. There's a 56-page Word document (Introduction copied below), and there are 2-page summary sheets for each state. Check out The Arc of the United States'l website at www.thearc.org.
There’s a wealth of information and resources available on the Web to help you become a more informed parent at IEP time. For those of you whose children haven’t reached school age, the IEP is the Individualized Education Plan that is developed each year by the public school team, including the parents. It’s required by a federal law known as IDEA, and there are specific requirements concerning the process that parents need to learn.
Special Education Rights … and Wrongs, a 43-page booklet published by the Maryland Disability Law Center, has been revised and is available FREE of charge by calling MDLC at 1-800-233-7201. The handbook covers the basics of special education in the state of Maryland and includes sample letters for parents who wish to request evaluations or team meetings.
Planning Now--A Futures and Estate Planning Guide for Parents of Children and Adults with Developmental Disabilities, is a new publication of the Maryland Developmental Disabilities Council offered FREE to Maryland families. This is an extensive guide—129 pages—with resource lists and worksheets to help families plan for a child who will need supports in adulthood. It covers, wills, trusts, guardianship, government benefits, and more. To request a copy, call the DD Council at 410-333-3688 or 800-305-6441
Transition Planning & Anticipated Services in the Individualized Education Program (IEP) Process is "an informational guide for students, families, and professionals" produced by the Maryland Transition Initiative and the state Department of Education. It provides an overview of the transition from high school, the difference between graduating with a diploma and a certificate, and the various services that might be needed after graduation. Call MSDE (410-767-0242) or Maryland Transition Initiative (410-554-9417 or toll-free 888-554-0334) to request a copy.
For online publications that explain the law and your rights at IEP time, go to www.nichcy.org. NICHCY is a federally funded clearinghouse of information on children with disabilities. You can download any of their articles at the Web site. New publications in recent months include ones on IDEA, on the IEP specifically, and on Interventions for Chronic Behavior Problems. If you don’t have Web access, you can call NICHCY and request a free copy of most of their publications (some cost a few dollars). 1-800-695-0285.