Adults Living with Cerebral Palsy

Adults with cerebral palsy face unique challenges. They have to simultaneously deal with symptoms of cerebral palsy, and with the problems of aging. Additionally, there is very little information available about what to expect as you grow older with cerebral palsy. The focus of cerebral palsy research seems to have always been on how kids live with the disorder. Health professionals and researchers neglected to study aging issues associated with cerebral palsy because it's a non-progressive disorder. However, even though cerebral palsy doesn't progress, aging does!
Why is Research about Adults Living with Cerebral Palsy So Important?

The number of adults with cerebral palsy is increasing but the amount of research about the subject is not. The population growth of adults with cerebral palsy is directly related to advances in medicine increasing population longevity and survival rates of pre-mature babies. As the number of people reaching adulthood with cerebral palsy increases so will the necessity for medical attention. Unfortunately, the lack of current research about the subject will leave these people with little knowledge to draw upon. The lack of current, relevant medical training programs threatens to result in a lack of qualified care in the future as well.
Statistics of Adult Cerebral Palsy

According to Cerebral Palsy statistics, the prevalence of cerebral palsy in children increased from 1 in 1,000 in the 1960's to 2 in 1,000 in the late 80's. This increase matches the increasing survival rate of pre-mature babies. According to cerebral palsy statistics, the number of adults living with cerebral palsy in the United Sates is estimated at 400,000. As medicine advances, so will longevity and the growth in this section of the population.

Motor deficiencies and mental retardation are the two most prevalent symptoms of cerebral palsy. Statistics show between 75% and 95% of children with motor deficiency symptoms will live to the age of 30 years old. 90 % of children with moderate mental retardation due to cerebral palsy will live until the age of 38 years old. Overall statistics indicate the current number of children who will pass into adulthood, at the age of 20, with cerebral palsy is 90%.

What the Cerebral Palsy statistics indicate is that cerebral palsy is increasing in the adult population. The number of medical specialists trained to understand and treat adult cerebral palsy is currently inadequate and is not increasing. Another problem is the current trend of transferring cerebral palsy adults out of specialized, long term care facilities and back into the community. While this endeavor is excellent for the socialization of those with cerebral palsy, it isn't as good for them medically. Very few primary care physicians, or even specialists, have any special training in adult with developmental disability medicine.
Adults with Cerebral Palsy and Health Care

While the lack of information and research about adult cerebral palsy is one issue, general health care is another. As children, people with cerebral palsy often have caretakers, be they family members or governmentally supplied assistance. At the age of 20, children previously cared for by the state become exempt from the supported programs they participated in as children. The number of available, governmentally supported adult programs is much smaller. Parents age and gradually lose the ability to care for their (now adult) children when they begin to deal with their own health and aging issues. In most cases adults with cerebral palsy become almost exclusively responsible for their own health care.

Interestingly, the problems of self-care for adults with cerebral palsy match the problems of self-care for elderly adults. Studies find elderly adults caring for themselves decrease in the participation of regular, periodic heath care as their age increases. Aging difficulties such as fatigue and movement problems were determined to be the culprit. Elderly adults were too tired to go to the doctor, found it too difficult to make the trip, dismissed symptoms as "old age" or overlooked symptoms. Similarly, adults with cerebral palsy are often overly fatigued from the daily requirements of living with the disorder or consider it too difficult to go to the doctor for a minor symptom. The problem for both the elderly and adults with cerebral palsy is that poor health surveillance results in a lack of early detection of major health issues.
What Can We Do to Help Adults with Cerebral Palsy?

Life expectancy for a person with cerebral palsy is similar to a non-disabled person. Adults with cerebral palsy require the nearly the same care needed as a child, with the addition of medical care typically required as people age. Statistics indicate the numbers of people surviving into adulthood with cerebral palsy will increase. With the lack of specialized training programs and research dedicated to the care of adults with cerebral palsy, will we be ready to handle the increase?

What can we do now? Governmentally, more care programs for adults with cerebral palsy should be developed. Research conducted now about adults with cerebral palsy needs to be compiled, studied and made available to general heath professionals. Major educational institutions need to begin specialized programs combining gerontology and developmental disability medicine. Adopting some of these solutions now will help insure adults living with cerebral palsy in the future won't face the same challenges as they do today.