IMPACT OF CEREBRAL PALSY
Our Foundation funded a research project which studied the social-psychological and the financial ramification on 315 families of children with disabilities due to cerebral palsy. The principal investigator was Dr. L. A. Koman of Wake Forest University. Results will be published. In the interim, the following is a summary of the findings. The study was done in several sites in North Carolina. The majority of persons studied were male (58%) and Caucasian (80%). Most are of grade school age (average 8.2 years) and are in regular classrooms. 3% are in foster care or in institutions. The findings are:
A. The Children The severity of the disability range is: mild (24.9%), moderate (43.8%), and severe (31.3%). The motor disability is: diplegia (36%), hemiplegia (20.5%), and quadriplegia (40.5%). Many of the children also have other medical problems associated with cerebral palsy including seizures, visual and/or hearing difficulties, and swallowing difficulties. A variety of orthopedic aids were being used: braces (58.3%), shoe inserts (20.8%), AFOs (55.8%), manual wheel chairs (36.6%), strollers (19.8%), walkers (24.8%) and positional aids (41.5%). In regard to the type and amount of therapy, 84.5% receive physical therapy about 6 times a month, 50% receive occupational therapy about 5 times a month and 37% see a speech therapist about 5 times a month.
B. The Family 90% of primary care givers are the child's mother. Two-thirds of the parents are currently married - 15.7% of the parents are separated or divorced. Two-thirds of the parents have additional children of which about 20% also have special health care needs. Of these additional children with special health care needs: 33% have cerebral palsy, 18% have an attention deficit disorder, 12% have developmental delays, 9% have learning disabilities and 9% have hearing disabilities. 43% of the parents have difficulty finding appropriate babysitters and caretakers. They often rely on relatives for regular and for emergency child care assistance. 13% of parents have had to reduce the number of hours they were employed in order to care for their child; an additional 34% have had to quit their jobs. 59% of families have an income of less than $30,000 per year. The child's medical care costs are assisted by Medicaid in 63% of families. In general, 93% of parents are satisfied with the amount of medical attention their child receives. However, 30% have significant financial concerns about the cost of physical therapy and 36% are concerned about the amount and quality of physical therapy. Some parents expressed frustration about knowing where to go for social or physical services to assist their child.
C. Impact on the Family Positive Impact: About 90% of parents report that learning to manage their child's disabilities has increased their own self-esteem and that the family has grown closer together. Also, parents often discuss their problems together and relatives have been helpful and understanding. Negative Impact: 65% report living on a "roller coaster" and 40% report having no time left to care for the rest of the family. Over 40% report family sacrifice and parent fatigue as common problems. 45% have considered having no more children.
Comment Is this study done in North Carolina representative of the whole of the USA? Probably not, but the findings do not surprise us and appear to be a reasonable documentation of experiences that are described in other geographical areas. There are probably other situations with somewhat different experiences that are strongly influenced by cultural, economic and educational factors. However, as a whole, children with disabilities due to cerebral palsy are well looked after by their parents (usually the mother), the families are strong and medical attention is reasonably good. We are surprised to learn of the number of sisters and brothers who also have evidence of a developmental disability. We don't know what that may mean. Again, we learn that having a child with a disability means hard work for the parents, but it is very rewarding work.
© UCP Research & Educational Foundation, January 1997

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