Cerebral Palsy Resources and Support Groups
Those feeling the effects of cerebral palsy may feel overwhelmed and alone at times. Fortunately, there are many different resources and support groups to help parents and their children.
The following resources will help put parents in touch with others who are experiencing the same types of issues, and with organizations which offer support and assistance.
Networking With Other Parents
Look online for forums and websites where you can network with other parents of children with CP. Facebook, Google+ and other social networks will have options for you, including support groups that you can join. Not only will this benefit you and your child, but it can also benefit others with cerebral palsy as well.
Others in the community may be able to give you some great tips, and if their child is older and the parents are more-experienced, they may be able to let you know what you should anticipate in the future. This is a great way to get to know new people and to get information from people other than healthcare practitioners.
Sometimes, networking with other parents isn’t just about asking how to deal with every crisis that comes up. It’s also a great thing to do because the parents of other CP sufferers will also understand the little victories you achieve from day to day.
Your family physician is the first and most obvious place you should turn for advice. While cerebral palsy itself cannot be “cured,” the symptoms can be treated.
There are quite a few new and exciting forms of treatment out there that can provide tremendous results. Speak with your physician about the treatment options available, and what might work best for your child.
Hearing and Speech Troubles
Look to your local school district and your medical provider for assistance with these issues. Some people with CP are completely developed mentally but have a hard time speaking and hearing. This can be very frustrating for them, as people may treat them with condescension. Your school district or medical provider should be able to refer you to a speech therapist.
Sometimes, physical therapy can help CP suffers to become more mobile. It can also help with the lack of coordination that comes with many types of cerebral palsy; providing a safe way to take on challenges that help the sufferer to improve balance and reflexes. Aside from therapy, look for organizations that offer used mobility equipment. If your child needs a particularly advanced type of wheelchair, this could save you a lot of money.
Cerebral Palsy Associations
United Cerebral Palsy (UCP)
UCP was the first major cerebral palsy association. It is a national organization with local affiliates all across the United States and beyond. The association is 55 years old and is one of the largest health charities in the U.S. Their goal is to work for the inclusion of people with cerebral palsy in every facet of society; work, education and the community.
1825 K Street NW Suite 600, Washington, DC 20006
CP Family Network
The CP Family Network mission is to provide information to all cerebral palsy families about diagnosis, treatments and resources for their child, as well as provide information and legal resources to families that suspect a preventable birth injury may have caused their child’s CP.
6700 Manchaca , #101, Austin Texas 78745
CP Daily Living
CP Daily Living is designed to give families and caregivers dealing with cerebral palsy a central place for practical information and resources within the context of an emotionally-supportive community.
Reaching for the Stars
Reaching for the Stars has grown into the largest pediatric cerebral palsy nonprofit foundation in the world led by parents, with a focus on the prevention, treatment and cure of cerebral palsy.
3000 Old Alabama Rd., Suite 119 – 300, Alpharetta, Ga. 30022
American Academy for Cerebral Palsy and Developmental Medicine (AACPDM)
AACPDM is a scientific association with a multidisciplinary membership. It studies cerebral palsy from all angles and combines research and information about the disorder form many different areas of medicine. The association works to promote professional education for the treatment and management of cerebral palsy and to increase quality of life for cerebral palsy sufferers.
555 East Wells, #1100, Milwaukee, WI 53202
Pediatric Brain Foundation
Much of the work done at this association is supported through the National Institute of Neurological Disorders and Stroke (NINDS), the National Institute of Child Health and Human Development, and other agencies within the Federal Government. It is multidisciplinary association where medical professional combine their research to solve unanswered question s about cerebral palsy. The association works on treatments, diagnosis and prevention of cerebral palsy.
2144 E. Republic Rd., Building B, Suite 202, Springfield, MO 65804
Independent Living Research Utilization Project (ILRU)
ILRU has a long history of providing research, education and consultation in the areas of independent living, home and community-based services, and the Americans with Disabilities Act.
1333 Moursund, Houston, TX 77030
Easter Seals is an American nonprofit charitable organization that assists more than 1,000,000 children and adults with disabilities and special needs (including cerebral palsy) through a network of more than 550 service sites in the United States, Canada, Australia and Puerto Rico.
233 South Wacker Drive, Suite 2400, Chicago, IL 60606
National Rehabilitation Information Center (NARIC)
NARIC is the library of the National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR). They collect, catalog, and disseminate the articles, reports, curricula, guides, other publications and products of the research projects funded by NIDILRR.
8400 Corporate Drive, Suite 500 Landover, MD 20785
Children’s Hemiplegia and Stroke Association (CHASA)
CHASA is the oldest organization in the United States dedicated to improving the lives of children and families affected by hemiplegia, hemiparesis, or hemiplegic cerebral palsy, often resulting from a perinatal or childhood stroke, traumatic brain injury, hemispherectomy, cancer surgery and a host of other causes.
4101 W. Green Oaks, Suite 305-149, Arlington, TX 76016
Links to Cerebral Palsy Facts and General Information
There are literally hundreds of links on the web that provide information about cerebral palsy. The following list includes just a few to help you get started.
- Nemours Children’s Health System –Provides information about cerebral palsy and links to other sites that provide additional information.
- Hemi-Kids – Support for parents of children with hemiplegia, hemiparesis, or cerebral palsy on one side of the body. Features Hemi-Kids e-mail list.
- 10 Helpful Cerebral Palsy Resources – Website with list of links to cerebral palsy resources.
Websites and Information from Others with Cerebral Palsy
Not everyone has the same experiences with cerebral palsy, so it can be very helpful to speak with others who are dealing with the condition. These websites will connect you with people who have cerebral palsy and are willing to discuss their condition. This will help you learn about the challenges other people face and help you better understand how to deal with your own challenges in a positive manner.
- The CP Diary – Jesse shares daily blogs and stories about her life with cerebral palsy.
- Love That Max – A blog about kids with special needs who kick butt!
Information about Collecting Disability Benefits
Those who are suffering from cerebral palsy are often unable to pursue a career on a regular basis. These websites will provide information about collecting disability benefits or at least helping parents cover expenses of those disabilities.
- Guide to Disability Benefits from Disability.gov – A website that contains links to information about collecting disability benefits.
- Medicare & Social Security Benefits for Disabled Individuals – A website that provides information about qualifying for Medicare Disability for those who are collecting social security disability benefits.
- Extra Help with Medicare Prescription Drug Plan Costs – This website provides information for those who need to obtain help with the costs of Medicare prescription drug plans.
Guide to Transportation for Those with Cerebral Palsy
Anyone who has cerebral palsy needs to still feel he or she is independent. Those with CP must be able to secure transportation in order to get places, whether this means having public transportation that can cater to those with disabilities or a vehicle that has been modified to allow those with CP to drive or ride comfortably.
- Disability.gov’s Guide to Transportation – Links and websites to help those with cerebral palsy find transportation and become independent.
Housing Information and Links
Those with cerebral palsy and/or their caregivers often have a difficult time finding housing they can afford or that has the necessary accommodations for their disabilities. The following websites and associated links will help those who need to finding appropriate housing or help moving.
- Guide to Moving for the Disabled – This website provides information and resources about moving in several large cities to help those with disabilities.
- Fair Housing Rights of Persons with Disabilities – Provides information on home design and construction requirements, sale or rental discrimination based on disabilities, reasonable accommodations in a housing provider’s rules and policies, and reasonable modifications of an apartment, due to a person’s disability.
Home Modifications and Safety
Sometimes it is necessary to make modifications to a home in order to make it possible for those with cerebral palsy and other disabilities to live independently. This includes not just modifications to help them move around easily, but also additional safety features that might be necessary. The following links provide information about making necessary accommodations for those with disabilities.
- Home Modifications to Promote Independent Living – The AARP website provides facts about making home modifications in order to accommodate those with disabilities, including cerebral palsy.
- Home Safety & Preparing for a Disaster – The American Red Cross provides tips for home safety, as well as implementing and maintaining a disaster plan for people with disabilities.
- Fire Safety & Disabilities Guide – Includes tips for maintaining fire safety for those with disabilities, and a list of additional resources on fire safety.
Additional Resources by State
Select your state from the list below, and we’ll provide a list of helpful resources in your area.