Financial and Treatment Options for Cerebral Palsy
If someone you love has just been diagnosed with cerebral palsy, you may be frightened, overwhelmed, and unsure where to turn. We created this page for you, to answer your questions, and to provide you with resources, support, and information. Within this page you'll find information about cerebral palsy and how it is caused and treated, support organizations for cerebral palsy, and how to locate financial support.
This page also includes links to state-specific pages with local resources for cerebral palsy in your community and your state's disability application process. Assistance is available for your family and we are here to help you get it.What is Cerebral Palsy?
Cerebral Palsy is the term used for a group of disorders that affects a person's ability to move and support balance and posture. "Cerebral" means having to do with the brain and "palsy" means weakness using the muscles. This perfectly describes the symptoms of cerebral palsy, which can range from mild and barely noticeable, to severe.
There are four types of cerebral palsy, classified by the type of movement disorder involved: (1) stiff muscles or spasticity; (2) uncontrollable movements or dyskinesia; (3) poor balance and coordination, or ataxia; and (4) mixed cerebral palsy. The most common type of CP is spastic cerebral palsy, affecting about 80% of people with the disorder.
Cerebral Palsy is generally caused by abnormal development of the brain or damage to the developing brain. This can happen in utero or shortly thereafter, up to about one year after birth. An infection that the mother has while pregnant or a lack of oxygen during a traumatic labor and delivery can lead to cerebral palsy. A traumatic brain injury after birth can also cause the disorder.How is Cerebral Palsy Treated?
Because cerebral palsy manifests differently in each child, treatment plans are often specifically designed for every child. However, we do know that early intervention can help each child develop to their fullest potential. Both early intervention and school-aged services are available through our nation's special education law, the Individuals with Disabilities Education Act (IDEA). Even if your child has not yet been diagnosed with cerebral palsy, they may be eligible for services.
Early intervention services for each child may include things like occupational, physical, or speech therapy; assistive technology devices; family training; nutrition; vision or hearing loss services; health; and counseling and home visits. Medical treatment for cerebral palsy often involves a comprehensive approach involving orthopedists; neurologists; pediatric specialists; orthotics; and physical, speech, and occupational therapists.Support for Families
There are also support organizations across the country offering assistance to children with cerebral palsy and their families:
- United Cerebral Palsy
United Cerebral Palsy is a nonprofit created 60 years ago that educates, advocates, and provides support services to ensure a life without limits for people with a spectrum of disabilities. UCP offers comprehensive support for families, including respite care, daycare, specialty camps and adult care, employment services, and educational and family training. With 65 affiliates across the country, UCP is one of the largest cerebral palsy support organizations in the country.
- International Cerebral Palsy Society
The International Cerebral Palsy Society was founded in 1969 in the United Kingdom to increase acceptance of individuals with cerebral palsy across the world. ICPS works to promote the rights of people with cerebral palsy and to develop services for children and adults with cerebral palsy to participate more thoroughly in society.
After a cerebral palsy diagnosis, it is completely normal to worry about the long-term financial implications of this disorder and its treatment. Cerebral palsy can be debilitating and expensive but there is help available.
You can apply for social security disability benefits as an adult with cerebral palsy, or for your child with the disorder. While you can certainly complete the application on your own, you may want to seek the assistance of an experienced cerebral palsy disability benefits attorney before you begin the process or before you begin your appeal. Moreover, if you believe your child's cerebral palsy may be the result of a birth injury or other malpractice, an attorney can give you all of your legal options to ease the financial burden on your family.Social Security Benefits
There are two options that fall under the category of "social security benefits." Social Security Disability Benefits (SSDI) are available to those who have paid into social security for at least 10 years and accumulated a sufficient number of work credits. SSDI may also be available for adult children who were disabled before the age of 22.
Supplemental Security Income (SSI) is available to low-income individuals who have either never worked or who haven't accumulated enough work credits to qualify for SSDI. Children may be eligible for SSI if your family meets the income requirements and your child meets Social Security's definition of disability for children, resulting in "marked and severe functional limitations," that have been "disabling, or expected to be disabling" for at least 12 months. In some cases, you may qualify for both SSDI and SSI if you qualify for SSDI and your payments are quite low. Medical eligibility for both benefits programs is determined in the same way.Applying for Social Security Disability Benefits
To apply for Social Security benefits, you can go to your local Social Security office, request that a form be mailed to you by calling (800) 772-1213, or apply online for an adult or child. The Social Security Administration's SSI Child Disability Starter Kit, Checklist, and Worksheet contain lists of all of the documentation and medical information needed to apply. Applying online before attending an in-person interview can help speed up the process. While the application and approval process can be long, cerebral palsy with severe impairments may entitle you to presumptive disability benefits and accelerate approval as well.
Although social security disability is a federal program, every state's disability determination agency is responsible for making medical decisions about each disability claim. In some states, if the disability determination agency approves you for SSI, you are automatically approved for Medicaid as well.
- Request for Reconsideration
If the disability determination agency denies your application for SSI or SSDI, you may file a "request for reconsideration." A different claims examiner at the determination agency will review your claim. If you haven't yet sought advice from an experienced disability attorney, this is a good time to do so.
- Hearing with an Administrative Law Judge
If your reconsideration request is again denied, you have the right to request a hearing with an administrative law judge, where you may submit additional documents and question witnesses. The administrative law judge will either affirm or deny your claim. Hearings are held at the Social Security Administration's Offices of Hearing Operations in your state. Most people choose to have an attorney assist them at this point in the process.
- Social Security Appeals Council
If denied at the hearing level, you have 60 days to ask for a review by the Social Security Appeals Council. If the Appeals Council feels that the hearing decision is correct, it may decline to hear your case. It may also decide your case itself or return your case to an administrative law judge for further review. If you disagree with the Appeals Council's decision, you may file suit in federal district court.
- State Supplemental Payment
In most states, a supplemental payment from the state may be available if you are approved for SSI. In California, Delaware, the District of Columbia, Hawaii, Iowa, Michigan, Montana, Nevada, New Jersey, Pennsylvania, Rhode Island, and Vermont, this supplement is managed by the Social Security Administration and your local disability determination agency, sometimes in coordination with the state. However, in Arizona, Arkansas, Mississippi, North Dakota, West Virginia, and the Northern Mariana Islands, there are no state supplements available. In the remaining states, the individual state health and human services agencies administer the state supplement program.
The process for receiving social security and state disability assistance can be long, frustrating, and overwhelming. In many states it can take more than a year from the initial application to approval of your claims. This means that it's often a good idea to consult an experienced disability lawyer before your initial claim or before an administrative hearing. An attorney can help you prepare your claim, making your initial application or hearing more likely to result in approval. A lawyer can also advise you on your options if you believe that your child's cerebral palsy is the result of medical malpractice.
Remember, you are entitled to seek legal assistance for this complicated process at any time. An experienced social security benefits attorney can shorten the process considerably, decrease the likelihood of an initial denial, and help to ensure that your family receives the assistance it needs after a cerebral palsy diagnosis.State Specific Cerebral Palsy Information