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Perspectives in Disease Prevention and Health Promotion Residential Arrangements for Adults with Cerebral Palsy -- California, 1988

In the United States, an estimated 274,000 persons have cerebral palsy (CP) (1), a neurologic condition defined as a group of nonprogressive disorders in which an abnormality of the central nervous system can result in motor dysfunction (e.g., paresis, involuntary movement, and incoordination). CP is the third leading cause of the need for assistance with basic life activities and the fifth leading cause of activity limitation (1). An adult with CP may require adaptive housing to improve accessibility (e.g., to entrances and toilet facilities), attendant care to assist with activities of daily living, and/or nursing care to meet specific health-care needs. These needs can be met through a variety of residential accommodations. However, because the residential environment has a considerable impact on well-being and quality of life (2), the accommodations should be in the least restrictive environment* and, when possible, community-based. This report summarizes an assessment of characteristics of adults with CP to determine which factors are associated with placement in a more restrictive environment.

This study used data from the 1988 annual Client Development Evaluation Reports (CDER) to compare health characteristics with the residential arrangements of 11,050 adults aged greater than or equal to 20 years with CP enrolled with the California Department of Developmental Services (CDDS). The CDDS contracts with regional centers to provide statewide case management for persons with developmental disabilities, including CP, regardless of economic need. Each year, the CDER obtains for each of these persons demographic data and diagnosable conditions and provides an assessment of the person's functional abilities. Living accommodations were classified into four categories, ranging from the most to the least restrictive: 1) developmental centers (DCs) (large state-run residential facilities); 2) group quarters, ranging from four to greater than 50 residents per facility; 3) residence with a parent or guardian; and 4) independent or semi-independent residence. Characteristics compared with residential placement were 1) the severity of CP, as indicated by use of a wheelchair; 2) mental retardation (MR); and 3) seizure disorder. Based on the presence (or absence) of these characteristics, eight combinations could be compared with residential placement. Information on bowel and bladder control and psychological problems** also was reviewed.

The analysis indicated that 24% of persons in the study group resided in DCs; 38%, in group quarters; 32%, with a parent or guardian; and 7%, independently or semi-independently. Persons living with a parent or guardian were younger and were more likely to be racial/ethnic minorities than persons living elsewhere (Table 1). Of those who resided independently or semi-independently, 92% had complete bowel and bladder control, compared with 9% of adults in DCs. Among persons living in DCs and group quarters, the relative frequency of psychological problems was more than twice that of persons living elsewhere.

Of adults who did not have MR or seizures and did not use a wheelchair, 29% lived independently or semi-independently (Table 2). With the presence of MR, the proportion of persons living independently or semi-independently decreased appreciably. Conversely, the proportion of persons living in DCs increased markedly with the presence of MR and seizures and with the use of a wheelchair. Reported by: Developmental Disabilities Br, Div of Birth Defects and Developmental Disabilities, Center for Environmental Health and Injury Control, CDC.

Editorial Note

Editorial Note: The National Council on Disability's report Toward Independence emphasized that all persons with disabilities should be able to live in settings that promote their independence and dignity (4). Placement of persons with substantial disabilities into less restrictive environments is an important goal that has permitted gains in developmental growth, cognitive improvement, and social skills (5-7).

The persons evaluated in this report may not represent all adults with CP in California. Although the CDDS has no economic criteria for enrollment as a client, not all California residents with CP have been registered with a regional center. Those who were registered may be more cognitively impaired than unregistered persons with CP. In this study group, 86% had MR, compared with 62% in a recent population-based study of 10-year-old children with CP (8).

Based on the findings in this report, the low proportion of adults with CP who live independently suggests the need to examine whether specific factors are associated with residence in more restrictive environments. This assessment did not indicate the extent to which the severity of CP and associated conditions or the presence of secondary health conditions influenced residential placement. Other factors, such as lack of accessible housing, deficiency of training, and inadequacy of support programs for independent living, may affect residential arrangements for adults with CP. Further efforts are required to clarify these issues and identify potential factors that may prevent persons with CP and other developmental disabilities from living in the least restrictive environment.

References

  1. NCHS. Disability statistics report. Rockville, Maryland: US Department of Health and Human Services, Public Health Service, CDC, 1989:8,14. (Report no. 2).

  2. Schalock RL, Keith KD, Hoffman K, Karan OC. Quality of life: its measurement and use. Ment Retard 1989;27:25-31.

  3. Lakin KC, Jaskulski TM, Hill BK, et al. Medicaid services for persons with mental retardation and related conditions. Minneapolis: University of Minnesota, Institute on Community Integration, 1989.

4. National Council on the Handicapped. Toward independence: an assessment of federal laws and programs affecting persons with disabilities--with legislative recommendations. Washington, DC: National Council on the Handicapped, 1986. 5. Conroy J, Efthimiou J, Lemanowicz J. A matched comparison of the developmental growth of institutionalized and deinstitutionalized mentally retarded clients. Am J Ment Defic 1982;86:581-7. 6. Eastwood EA, Fisher GA. Skills acquisition among matched samples of institutionalized and community-based persons with mental retardation. Am J Ment Retard 1988;93:75-83. 7. Larson S, Lakin C. Deinstitutionalization of persons with mental retardation: the impact on daily living skills. Minneapolis: Institute on Community Integration, University of Minnesota Policy Research Brief 1989;1(1)(rev):1-5. 8. Yeargin-Allsopp M, Murphy C, Trevathan E. Cerebral palsy in Atlanta: preliminary results from the Atlanta Developmental Disabilities Study. Ann Neurol 1988;24:348.

  • The least restrictive environment is the setting that provides

basic health and safety while offering the fewest restrictions on a person's independence and the greatest opportunities to further a person's independence (3).

** Psychological problems were defined by a Diagnostic and Statistical Manual of Mental Disorders, 3rd Edition, Revised diagnosis other than MR or related conditions, or by a current prescription for a behavior-modifying drug.

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