Cerebral Palsy - Advice for Parents

Some helpful tips for Parents of someone with Cerebral Palsy

First, talk with your child's doctor or teacher if you are concerned about your child's development.

The National Dissemination Center for Children with Disabilities (NICHCY) has resource sheets that list key programs in each state for children with developmental problems and for their families. The lists include state agencies serving children and youth with disabilities, state chapters of disability organizations and parent groups, and parent training and information projects. [View the NICHCY Resource Sheet for your state]

You can also call NICHCY at 800-695-0285 (voice or TTY) to talk with a staff person about your questions or concerns or e-mail them at nichcy@aed.org.

Every state provides education services for children who have developmental problems. These programs can start right after a baby is born and last until he or she turns 22. You can find out more about these programs from the following resources:

U.S. Department of Education (DOE)
DOE has written a guide to help parents, teachers, and education agencies put in place Individualized Education Programs (IEP) for children (including preschoolers) with disabilities. [View "A Guide to the Individualized Education Program"]
 
The DOE Web site also has an article on parents' rights and responsibilities in the special education process. It includes suggestions of ways a parent can have input into their Individualized Family Service Plan (IFSP) or their child's Individualized Education Program (IEP). [View "Rights and Responsibilities of Parents of Children with Disabilities"]

National Dissemination Center for Children with Disabilities (NICHCY)
NICHCY has written a guide for parents on how to get early intervention services for children ages birth to 3 years and special education services for children ages 3 to 5 years. The guide is available in both English and Spanish.
[In English: Parent's Guide to Accessing Programs for Infants, Toddlers, and Preschoolers with Disabilities]
[En Español: Guía para Padres: Programas para Infantes y Niños Pre-escolares con Discapacidades]
 
Another NICHCY publication answers questions and concerns that parents, teachers, and others who work with children with disabilities have about the Individuals with Disabilities Education Act (IDEA). IDEA is the federal law that supports special education and related services for children and youth with disabilities. This publication is available in both English and Spanish.
[Questions and Answers about IDEA]

NICHCY has also written an article on the educational and civil rights of children and youth with disabilities through age 21 years. The article focuses on IDEA, Section 504 of the Rehabilitation Act of 1973, and the Carl D. Perkins Vocational Education Act. It is available in both English and Spanish.
[The Education of Children and Youth With Special Needs: What Do the Laws Say?]

Financial help may be available for health care.

Children's Health Insurance Program
Each state has a Children's Health Insurance Program that provides free or low-cost health insurance for eligible children. The Insure Kids Now! Web site has basic facts about these programs. It also has links to every state's insurance program for children, where you can learn who is eligible for the program, how to apply, and what services are covered. Information is available in English and Spanish.
[ Insure Kids Now! | Your State's Program]

Medicaid
People of all ages who have disabilities may be eligible for health care coverage through Medicaid. Each state runs its own Medicaid program. The Centers for Medicare & Medicaid Services Web site has general information about Medicaid, including who is eligible and what services are provided. It also has the Web address for each state's program. [Go to the Centers for Medicare & Medicaid Web site] [http://www.insurekidsnow.gov/states.htm]

People with developmental disabilities may be helped by using assistive technology (AT). AT is any item that helps a person do things in his or her daily life. Examples of AT devices include wheelchairs, a keyguard that helps children find the right keys on a computer keyboard, a simpler remote control for a TV or stereo, an adapted mouse that makes computer navigation easier, switches that help children play with toys, and talking books.

The National Institute on Disability and Rehabilitation Research (NIDRR)
NIDRR funds state projects that help people of all ages with disabilities get access to AT devices and services. [Find the NIDRR assistive technology project in your state and visit the project's Web site]

National Library Service for the Blind & Physically Handicapped (NLS)

NLS provides a free library service for people who cannot read regular books and magazines because of vision impairment or physical disability. NLS offers books and magazines in both Braille and audio formats. NLS libraries are located throughout the country. [Read more about NLS]

MEDLINEplus: Assistive Devices

MEDLINEplus is an online service of the National Library of Medicine. It links users to information about specific health topics, including assistive devices. The site includes general information about assistive devices, plus links to information about funding, research, specific conditions, dictionaries, organizations, statistics, and children, teenagers, and seniors. MEDLINEplus brings together information from many sources and is updated daily. Some information is available in Spanish.
[In English: MEDLINEplus Health Information: Assistive Devices]
[En Español: MEDLINEplus Información de Salud: Aparatos de asistencia]

Possible new treatments for people with disabilities are studied through clinical trials. ClinicalTrials.gov is a Web site run by the National Library of Medicine that has information about studies funded by the National Institutes of Health, other federal agencies, and companies that make drugs. You can find out about studies involving people who have certain disabilities, including who is doing the study, what the purpose of the study is, who can be in the study, where the study is being done, and how to get more information about the study. When you go to the ClinicalTrials.gov site, you can enter the name of the disability you are interested in, such as “cerebral palsy” or “blindness.” Then click on the Search button and you will see a list of related studies. [Find studies on ClinicalTrials.gov site]

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