Decreased access to health care and social isolation among young adults with cerebral palsy after leaving school

Journal of Orthopaedic Surgery, Jun 2003 by Ng, S Y, Dinesh, S K, Tay, S K H, Lee, E H

ABSTRACT

Objective. To examine if leaving special schools has a negative impact on the health care and social isolation of young adults with cerebral palsy.

Methods. Young adults with cerebral palsy, aged between 15 and 22 years, were divided into 2 cohorts: current students, who were still receiving services from special schools, and school-leavers, who had since been discharged from care. A questionnaire and physical examination were administered to assess the extent of disability, health care received by, and social isolation of these young adults.

Results. School-leavers had a greater degree of dissability than did students, although the results were not statistically significant. Health care exposure to specialists, general practitioners, therapists (physiotherapists, occupational therapists, and/or speech therapists), and medical social workers decreased after leaving school; with the exception of contact with general practitioners, these results were significant (p

Conclusions. Young adults with cerebral palsy continue to have health care and lifestyle needs after leaving school, which are currently not being adequately met.

Key words: cerebral palsy; delivery of health care; disabled persons; health services

INTRODUCTION

The prevalence of cerebral palsy at birth1 and life expectancy of children with cerebral palsy2 are increasing worldwide. These trends have been attributed to improved obstetric and neonatal care, and hence increased survival of infants with low birth weight.3 When these individuals reach adulthood, they still require special medical attention. Young adults with physical disabilities may have severe problems left untreated due to diminished contact with health services after leaving special schools.4 In addition, they can have considerable continuing impairment and disability. Thus, the lack of contact with health services after leaving school may adversely affect their health status.5

In addition, young disabled adults face difficulties in integrating into society.6 Although relationships with parents are described as positive and friends are viewed as very important, most disabled people have extremely limited out-of-school contacts, negligible participation with organised social activities, and a predisposition towards sedentary activities. Dating is rare for these adults, but most of them hope to marry.7 In a case series focusing specifically on adolescents with cerebral palsy, young adults with cerebral palsy were found to be socially less active than a control population; the older age-group was socially less active than the younger.8

In Singapore, disabled young adults with cerebral palsy are cared for mainly by organisations that are funded by a combination of public and private funds, and staffed by professionals and volunteers. Examples include the Spastic Children Association of Singapore, Asian Women's Welfare Association, and the Rainbow Centre. These organisations offer a spectrum of subsidised special education and therapy for disabled children, ranging from early intervention programmes right after birth, to open and sheltered workshop employment training until the age of 18 years. However, there is no structured care programme for these adults after the age of 18 years. Some individuals are eligible for open employment or sheltered workshops, which provide a supervised environment for disabled individuals to earn a basic pay by performing simple tasks. Others remain at day-care centres. The rest inevitably become homebound. Furthermore, there is no central organisation that manages referrals and follow-ups for these individuals. Instead, care is mainly co-ordinated by health care professionals with a special interest in disability.

We aimed to investigate the health care and social integration of young adults with cerebral palsy in Singapore, both while they are in school and after leaving school. In the context of increasing prevalence and survival of children with cerebral palsy, this study has implications for demands on medical resources in the near future.

METHODS

In 1999, young adults with cerebral palsy who were born between 1977 and 1984 and aged 15 to 22 years were identified from school records of the special schools that provide special education and therapy for the majority of children with cerebral palsy in Singapore. The participants were divided into 2 cohorts-the current student cohort, which consisted of young adults who were receiving services from the schools, and the school-leaver cohort, which consisted of those who had left school at the time of the study. Verbal permission was sought from both the schools and parents, and a visit was made to the participants' homes by 2 fourth-year medical undergraduates.

A standardised questionnaire and clinical examination were administered. The questionnaire sought to elicit data about the individual's degree of disability, the amount of health care received, and the degree of social isolation. Measures of disability were identified and adapted from those described by Hutton et al.,2 Evans et al.,9 and Pharoah et al.10 Participants were examined and scored on the following aspects of disability: ambulation, intelligence, vision, hearing, communication skills, and manual dexterity.