Self-concept has been examined in children with cerebral palsy. This affects many different areas of life including social, athletic and academic competence. There is some debate whether young children with cerebral palsy have a lower overall self-concept than children without any impairment, but a recent study of children with mild-to-moderate spastic diplegia or hemiplegia at Gross Motor Function Classification System (GMFCS) levels 1, 2 or 3, generally had no difference in their global self-worth than children without disabilities. It has been proposed that children with mild or moderate degrees of cerebral palsy are expected to do more by their peers, so might be more vulnerable than children with more severe cerebral palsy.
It was found that children with cerebral palsy had a positive self image in areas of overall self-worth, physical appearance and behavioral conduct. Boys with cerebral palsy scored lower than boys without disability in scholastic and athletic competence, with girls scoring lower in areas of social acceptance and athletic competence. Young children with cerebral palsy scored lower in areas of scholastic and athletic competence. The fact that children with cerebral palsy generally score themselves as lower in athletic competence is possibly a sign of a realistic view of themselves with their physical challenges. Additionally, the fact that their overall sense of self-worth was not affected by this indicates that athletic competence is not strongly valued. There is also a question whether the boys and younger children scoring themselves lower on scholastic competence may be due to more frequent absenteeism with illness or visits to the doctor or therapist or possibly due to cognitive or communication deficits. These are important considerations in setting goals for each child.
Studies of social interaction and social adjustment in children generally show that children, particularly girls, tend to have a positive perception of other children based on physical similarities, social status and behavior. Girls tend to form small, homogeneous groups. Boys tend to form larger groups that are more heterogeneous with personal and social characteristics. The potential risk for girls with cerebral palsy having more social difficulties appears inherent in how young girls interact, particularly around the ages of 9 to 12.
There are, therefore, some who advocate working on particular social skills from a preschool level. This would include working on regulating emotions, interpreting intentions of others, positive reinforcement of desirable behaviors (such as sharing, helping and cooperating) which are associated with positive social status with peers in the general population. Therefore, theoretically, working on these skills before school age would enhance the ability for more positive social interactions with children.
It has also been shown that having at least one friend reduces the feeling of loneliness. It is also a protective factor against being picked on, unless the friend is a potential victim too, which then is an additional risk for rejection. The role of family, parents and teachers in maintaining positive social adjustment is important but not well defined. It has been suggested that having teachers or administrators monitor social situations several times a year could be helpful for promoting positive social interactions for children.
It has been reported that children who grow up with physical disabilities do not have a sense of loss. It is only around adolescence when they have more social awareness that they have problems with adaptation. Early on, it is only a problem with parents’ adaptation. To follow a child’s physical status is not a child’s response. In fact, when looking at surveys of quality of life in children with cerebral palsy, those with more severe motor involvement do not necessarily show a lower quality of life. Additionally, the children rate themselves higher than their parents do. Therefore, it is important to identify the child’s strengths and to create opportunities to develop these and their self-confidence.
A group of 16 to 20 year olds with cerebral palsy reported that they had restrictions in daily activities and social activities such as mobility, self-care, community living, leisure activities and employment, mostly due to gross motor function deficits, lower levels of education and younger age (Netherlands). Another group in the Netherlands age 21 to 31 reported that over half had completed secondary education, 36 percent had paid employment, 75 percent were independent in the activities of daily living with 90 percent moving about independently indoors. One-third of them lived alone, 30 percent lived with their parents and 12 percent lived in apartments with half living in a house that was not adapted. The large majority were independent in activities of daily living, mobility and communication but found difficulties with education, employment and sports activities.
There have been studies attempting to predict social interaction among adults with cerebral palsy. Two-thirds of those with cerebral palsy were living independently either on their own or with friends or a partner, with 13 percent living with their parents and 16 percent living in some type of facility for those with special needs. The biggest predictors for not living independently were decreased cognition, seizure disorder and severe motor impairments.
Approximately 30 percent are married or live with someone. No one with severe cognitive deficits or inability to walk and very few with seizure disorder live alone. Twenty percent of those studied had children including 27 percent of the women and 13 percent of the men. Approximately 80 percent of those who were parents had normal cognition and 90 percent were able to walk. It is felt that specific cognitive or perceptual deficits in people with cerebral palsy may contribute to difficulty in these social areas. Difficulty in concentrating and reduced ability to structure tasks along with physical fatigue in adults with cerebral palsy may contribute to these results. Selection bias in studies like this probably contributes to overestimating the difficulties and social problems of cerebral palsy. Those with mild cerebral palsy are either not diagnosed or not connected to a system that would have them enrolled in such a study. Therefore, the information is hopefully somewhat more positive than these numbers reveal.
There is a movement to include children with disabilities in the general education system so that people are looking both at the children and the school environment to maximize participation and inclusion. Studies looking at participation show that children with spastic hemiplegia participate more than those with diplegia who participate more than those with quadriplegia. Children with Gross Motor Function Classification System (GMFCS) level 2 participate more than those with level 3. This was true for both participation and activity performance. Participation and activity performance increase as the severity and complexity of motor disabilities decrease. Physical, cognitive and behavioral variables can limit participation and predict functional performance.
Not surprisingly, looking at function in different environments in school including the classroom, cafeteria, playground, bathroom and transportation have different sets of predictors in each context. This is helpful in suggesting future pathways for maximizing success in each area. Children with self-contained classes require greater physical and cognitive support than children in inclusion classes. Approximately two-thirds of students have barriers to participation in the physical and social environment. This is a more significant problem as students progress to higher levels of education. It is important to identify these physical and social barriers to maximize participation academically and socially for students with cerebral palsy.
In the middle 1960s, state legislatures and Congress began to formulate educational rights for children with disability with 45 state legislatures passing laws with special education programs by 1975. The federal courts then interpreted the equal protection and due process guarantees of the 14th amendment of the U.S. Constitution to state that schools could not discriminate on the basis of disability and gave parents due process rights related to education of their children. A federal court case in 1972 and passage of federal legislation in 1975 of public law 94-142, Individuals with Disabilities Education Act (IDEA), mandated free appropriate public education for all children with disabilities. This gave protection for eligibility of special education services, parental rights and a requirement that children be educated in the least restrictive environment. There was also an obligation to provide related services such as counseling, physical therapy, occupational therapy and speech therapy.
This mandated individual education programs (IEP), which are the unique written plans for each child that document their special education related services. The IEP is developed by the parents, school personnel and anyone else the parents invited to the meeting. It is reviewed annually, with evaluation of whether educational goals have been met. Children must be served in the least restrictive environment and educational matters, such as curriculum, are left to the local education system to specify. This governs education from birth to age 21. When a child is deemed to not benefit from education in a school setting, other placements should be considered. Special education for students with disabilities is one of the largest categorical programs in public school. The regulations have been amended yearly giving states more flexibility with their regulations. Cost should not be a deterrent in obtaining the services a child needs, but when there are several appropriate options of services, the school may consider the cost of alternatives.
IDEA has allowed access to public school for many children. It has decreased the need for institutionalization of children with severe disabilities due to the previous 24-hour day demands on parents, which is now a shared responsibility.
Several studies have also been done looking at employment in adults with cerebral palsy. These studies have found 30-50 percent were competitively (regular job) employed. One study found that speech deficits lead to verbal difficulties and decrease in competitive employment. Individuals with hemiplegic cerebral palsy most often had competitive employment compared to those with other types of cerebral palsy. No one with very low IQ with inability to be in a regular school or with severe motor impairment was competitively employed. The severity of cognitive and motor impairment, seizure disorder and type of cerebral palsy were predictive factors in competitive employment. The severity of motor impairment in those who were able to walk, however, was only a minor influence. The single most important factor in employment was cognitive abilities.
Even with this information, only half of those with cerebral palsy who went to mainstream school had a competitive job, which leads to questions about specific kinds of perceptual deficits as well as environmental factors including employee policy, attitudes towards those with disability, accessibility and social interactions. These studies would not have included those with very mild cerebral palsy, making the information gloomier than it likely is. Additionally, advances in rehabilitation technology, more organized home support services and legal mandates should be helping make conditions for those with cerebral palsy better. One difficulty with competitive employment is receiving income so high that termination of disability benefits including financial support and insurance coverage leads to overall financial loss. This is a serious societal and political problem. Approximately one-third of those living independently have an attendant. It is challenging to find, train and continue with reliable attendant services. This has a significant impact on both vocational and social opportunities.