Cerebral Palsy by Freeman Miller

Author:Freeman Miller
Language: eng
Format: epub, pdf
Publisher: Johns Hopkins University Press
Published: 2017-10-15T00:00:00+00:00

Who can help me find resources to help my child?

You will find that other parents are a phenomenal source of knowledge, wisdom, and support. Every state has a chapter of Family Voices, a grass-roots organization run by parents who have children with special health care needs. Call on Family Voices for information on state programs and eligibility, insurance questions, advocacy support, and general information. Because the members of Family Voices are all parents, they understand the maze you are faced with and know the importance of timely, accurate information.

Professionals who work with children and adults with disabilities can be very helpful. If they do not have an answer for you, they can usually refer you to someone who does. Search the Internet for keywords such as cerebral palsy, developmental disability, intellectual disability, support, services, family, and the name of your state. Every state has a federally mandated Developmental Disabilities Council. You can check out their website or call them for resources. As you’ll soon discover, there are many ways to gather information on resources and programs, services, and agencies, but it is mostly up to you to do the investigating. There is no “one-stop shopping.” Every state also has education advocates for students with disabilities. You can search the Internet for your state’s Parent Training and Information (PTI) Center, which specializes in education law, IEPs (Individualized Education Programs), 504 plans, accommodations, and parent support.

Many associations can provide a list of resources available for people with cerebral palsy. One of these, United Cerebral Palsy (UCP), is listed in the phone book and on the web under “United Cerebral Palsy.” Each region has a chapter that can provide information on local resources. One thing to remember is that community agencies usually are knowledgeable only about the services offered in their community. If you require broader information, you will have to contact federal agencies or the national headquarters of UCP.

It is often helpful to contact the offices of your state senator, assemblyperson, federal congressperson, and other politicians for assistance in locating the governmental office that can help you gain access to services. It’s a good idea to keep a log of all contacts. Record the names, phone numbers, addresses, and days and times called. Indicate whether the office was helpful and what your conversations were about. You may not need the agency at the present time, but you should tuck the information away for future reference.

Group activities and support groups are valuable for a number of reasons. For one thing, the people who attend can share resource information with you. While getting out of the house one night a week to attend a support group may not seem like the most exciting use of your time, it is a good way to find out from other parents what kind of help they are getting and how they are getting it. Additionally, the emotional support, both given and received, can be of great value. Many agencies offer parent and/or family support or respite opportunities. If you can’t attend all the meetings, at least try to attend a few.

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