Emerging rehabilitation needs of adults with developmental disabilities.

This Special Issue reflects a number of trends for those adults with developmental disabilities that have surfaced within the last decade or so in the United States. For professionals in rehabilitation assisting those with developmental disabilities new demands are being made for community inclusion, autonomous decision making, independent living, supported employment, career development and retirement planning. These are new requirements in some cases for those with developmental disabilities and reflect fundamental changes in how those with developmental disorders are perceived professionally and publicly. However, such changes in "mind set" (Harper, 1991) and emphases on developmental disabilities are reported to be slow to move into graduate training programs (Szymanski et al., 1991) in psychology or medicine. The topics in this Special Call (mental retardation and psychiatric disorders - dual diagnosis, vocational assistance of adults with specific learning disabilities, habilitation of adults with autism, career planning in developmental disabilities, and retirement planning for aging adults with mental retardation) have appeared only within the last decade. Moreover, numerous authors and forecasters (Borsay, 1986; Jongbloed and Crichton, 1990; Harper, 1993) have noted a dissatisfaction with existing static-disease models for viewing disability in adults and children and chronicled the movement from an individualistic conception of disability to a socio-political definition. Disability differences, traumatic or developmental, can certainly be understood from an ecological perspective that includes the reality of the physical differences and their adaptive limitations but as importantly their genesis in social and economic environments. The implicit and explicit messages in each of these manuscripts in this Special Call is that personal growth flourishes for those with developmental disorders in environments that promote increasing autonomy in real life settings. Changes in rehabilitation potential also reflect newer understandings of developmental disorders (e.g., autism as a neurobehavioral communication disorder) and most importantly activism of consumers (Fine and Asch, 1988). The following paragraphs detail some of the key issues and contemporary trends in understanding the emerging needs of adults with developmental disabilities.

Those with developmental disabilities, in particular adults with significant mental retardation are living longer (Walz, Harper, and Wilson, 1986; Harper, 1989, 1991) and residing in community settings in greater numbers (Wadsworth, Harper, and McLeran, 1995). This simple fact has placed more demands on all rehabilitation service sectors. It is likely that this trend will continue and increase in other developmental disorders (e.g., cerebral palsy), (Janicki, 1989). These increases in longevity are in part a function of general growth in longevity for all Americans as well as related to better access to ongoing health care and more healthy and active lifestyles available to all those with developmental disorders now living in community settings.

As part of another contemporary trend having an impact on rehabilitation professionals, the definition of mental retardation as a major component of developmental disabilities is changing and evolving (Luckasson et al., 1992). This current definition "represents a paradigm shift, from a view of mental retardation as an absolute trait expressed solely by an individual to an expression of the interaction between the person with limited intellectual functioning and the environment," (Luckasson, et al., 1992). This definition is described as a move from a "deficiency-model to a support-based-model of mental retardation" (Reiss, 1994, p1). This support-based model is viewed by many as part of the response to and dissatisfaction with science as truth in the "post-modern epoch" (Merydith, 1995). Mental retardation is viewed as a "state" which implies limitations on current functions of the person. The impact of this "state" is variable dependent upon the availability of existing environmental supports both physical, psychological, and social. This variable state idea acknowledges its permanence as well as the relativism inherent in behavioral definitions. This change is not without its problems or critics (Jacobson and Mulick, 1994; MacMillan, Gresham, and Siperstein, 1993). Concerns about this new definition have noted: measurement/psychometric changes of intellectual "cutoffs" of mental retardation as arbitrary and inconsistent with newer cognitive tests; significant increases in the numbers of individuals classified as displaying mental retardation; overrepresentation of minority groups as having mental retardation. Clearly these new definitions proposed in the American Association on Mental Retardation definition have implications for all rehabilitation settings and providers. This new definition will have an impact on rehabilitation settings as we move toward this "support-based model;" more specificity will be required in defining adaptive services, more frequent monitoring will be needed to evaluate an individual's response to supports, and less emphasis will be placed on diagnostic labels as entry tickets to service systems. Many of these changes may reflect positive aspects for those with developmental disabilities. The present use of this 1992 definition is not easily incorporated into existing delivery or evaluation systems and a few states have moved to use the complete classification system currently.

Finally, in this brief review of contemporary trends it should be noted that there has been a long-standing debate related to the occurrence and etiology of psychiatric disorders in mental retardation dating to the comments by Esquirol in 1828 that mental retardation and mental illness were separate entities (Hayman, 1939). Contemporary experts (Matson and Barrett, 1993) note that co-morbidity of mental illness and mental retardation is clearly evident and a higher percentage of such coexisting problems are documented (Sevin and Matson, 1994) in those with mental retardation. The issue of co-morbidity or dual diagnosis (mental retardation and mental illness) has been problematical for those with developmental cognitive disorders (Reiss, Levitan and Szyszko, 1982). Despite the higher incidence of mental illness in mental retardation a wide variety of clinicians tend to diagnostically emphasize their client's mental retardation and underemphasize existing psychopathology (White et al., 1995). This diagnostic bias referred to as diagnostic overshadowing (Reiss et al., 1982) has been shown to effect treatment access generally by a variety of practitioners. Recently this bias in the form of ageism has also been extended to older adults with developmental disabilities (Wadsworth, 1996). Interestingly this phenomena has been extended to rehabilitation professionals regarding clients with developmental and physical disabilities (Garner, Strohmer, Langford and Boas, 1994). These data suggest that rehabilitation professionals among others are susceptible to such clinical bias and need to exercise more "critical thinking about their thinking" (Garner et al., 1994). These treatment biased studies have been confined to analog designs which may clearly limit their generalization of this phenomena. Nevertheless, rehabilitation educators might profitably explore how to incorporate training against bias in clinical decision making to sensitize young practitioners against such "overshadowing bias" (Garner et al., 1994).

The foregoing issues: increasing longevity for those with developmental disorders, a new definition of mental retardation, and psychiatric co-morbidity in mental retardation all have a significant impact on the current rehabilitative-support service systems in the United States. Each issue also brings about a need for more specific knowledge in graduate training and in continuing professional education. Contemporary trends impacting on the service demands for those with developmental disorders is clearly increasing in the United States and quite likely elsewhere in the world as well. Presently in the United States we are experiencing a period of reduced governmental spending for public welfare in all human service sectors. These authors in the current papers provide very important information for the needs of those with developmental disorders as they mature into adulthood. This information is instrumental in efficiently documenting the emerging needs of those with developmental disorders in these times of diminishing resources.

This Special Edition of the Journal of Rehabilitation attempts to address selected issues in understanding the rehabilitative needs of adults with developmental disorders as they mature. The first group of authors (Jacobson; Fletcher and Poindexter; Hurley) open with a review of mental health needs of adults with mental retardation. Historically (Menolascino and McCann, 1983) there has existed much confusion about the relationship of mental retardation and mental illness. Etiology, classification, and treatment have seen major advances chronicled by these current manuscripts. Jacobson (1996) notes that the social and adjustment needs of this group of adults with developmental disorders are underdiagnosed and underserved. Interestingly these limitations are not seen as a function of knowledge of limitations per se' but more related to historical policy of competing service agencies and policy issues. Jacobson suggests some new tasks and focus for rehabilitation professionals to assist those with mental retardation and mental illness. Fletcher and Poindexter (1996) characterize a need for effective service models to utilize the best of mental health and mental retardation service systems conjointly. The National Association for the Dually Diagnosed (N.A.D.D.) is a focus group for these service issues in the United States. Hurley (1996) a well-known professional in the field of developmental disabilities presents a combination of practical and empirical data to evaluate depressive episodes in adults with Down Syndrome. Standard psychiatric nosology is augmented by presenting a "framework of mental retardation equivalents" to assist in understanding depression in those with Down Syndrome. Each of these authors identifies important advances and trends in assisting those with developmental disabilities and concurrent psychiatric disorders.

Learning disability as noted by Kavale and Forness (1996) has indeed "grown up." Learning disability is not confined to the school years and clearly has long-term implications for the adult and their vocational direction and success. Transition planning is an important key for those assisting in the rehabilitation process and such planning needs to occur for youth prior to departure from the public school setting. Dunham, Koller and McIntosh (1996) present data exploring actual vocational outcomes of individuals with specific learning disabilities (SLD). Standard psychometrics reveal limited success in predicting particular vocational rehabilitation interventions according to these authors. Multiple personal, and in some instances neurobehavioral factors were related to and impacting on obtaining and maintaining employment for these adults. Individuals with SLD are known to present a complex array of characteristics for rehabilitation counselors to consider in more depth. Assessment and awareness needs to move beyond common cognitive limitations and achievement deficiencies according to these authors.

Career development models for those with developmental disabilities is presented by Szymanski and Hanley-Maxwell (1996) who stress both an ecological and individualized orientation. Career development planning and counseling is a needed focus for many with developmental disorders which is often disregarded. Conceptual models and interventions are presented and discussed as a practical and, rather importantly planful way to assist adults with developmental disabilities in developing appropriate career and vocational expectations. Rimmerman, Botuck, Levy and Royce (1996) present data on employment for urban youth with developmental disabilities. On this challenging group of youth it became apparent during the course of this study that selected sociodemographic factors had a more powerful influence in determining job placement than disability functioning per se'. Young adults with disabilities employment rates were noted to be influenced by family factors, a not often recognized issue in placement outcome studies.

Adults with autism represent a new challenge for rehabilitation counselors and all human service providers. This developmental disorder remains a complicated mixture of myth and concern. VanBourgondine and Schopler (1996) describe one of the landmark service, education and research programs for individuals with autism in the United States. The philosophy of Division TEACCH, derived by Eric Schopler is briefly reviewed and applied to adults with autism. The basis of programming/treatment explicate the unique needs of these adults as they become adults. Giddan and Obee (1996) present a description of Bittersweet Farms as a working/habilitation community for adults with autism. This unique living setting provides interesting insights into adults as they mature with autism. These foregoing authors describe the challenges of assisting adults with this unique communication disorder on a daily interactive basis.

Finally, Heller, Sterns, Sutton and Factor (1996) present an important topic of "late life planning" for those with mental retardation. Due to the increasing longevity of all those with developmental disorders and aging of their parents as well, a life span orientation is needed for rehabilitation professionals. Positive aspects of change are presented based upon the often forgotten premise: "behavior change can occur at any point in the life cycle."

This edition presents an Opus for many rehabilitation professionals who are assisting those with developmental disabilities. We thank them for their effort and expertise and commend these manuscripts to your reading and enjoyment.

References

Borsay, A. (1986). Personal trouble or public issue? Toward a model of policy for people with physical and mental disabilities. Disability, Handicap and Society, 1, 179-195.

Fine, M. and Asch, A. (1988). Disability beyond stigma: Social interaction, discrimination, and activism. Journal of Social Issues, 44, 3-21.

Garner, W.A., Strohmer, D.C., Langford, C.A. and Boas, G.J., (1994). Diagnostic and treatment overshadowing bias across disabilities: Are rehabilitation professionals immune? Journal of Applied Rehabilitation Counseling, 25, 33-38.

Harper, D.C. (1989). Aging and mental retardation. Current Opinion in Psychiatry, 2, 603-606.

Harper, D.C. (1991). Aging in mental retardation. Current Opinion in Psychiatry, 4, 717-721.

Harper, D.C. (1993). New paradigms in research and practice in childhood rehabilitation. Occasional Papers in Psychology, Visiting Fellowship Series #3, Department of Psychology, Massey University, New Zealand.

Hayman, M. (1939). The interrelations of mental defect and mental disorder. Journal of Mental Sciences, 85, 1183-1193.

Jacobson, J.W., and Mulick, J.A. (1994). Behavior modification and technologies, the power of positive stereotyping, or have you changed the way you think yet? Psychology in Mental Retardation and Developmental Disabilities, 19(3), 8-15.

Janicki, M.P. (1989). Aging, cerebral palsy, and older people with mental retardation. Australia and New Zealand Journal of Developmental Disabilities, 15, 311-320.

Jongbloed, L. and Crichton, A. (1990). Difficulties in shifting from individualistic to socio-political policy regarding disability in Canada. Disability, Handicap and Society, 5(1), 25-36.

Luckasson, R., Coulter, D.L., Polloway, E.A., Reiss, S., Schalock, R.L., Snell, M.E., Spitalnik, D.M., and Stark, J.A. (1992). Mental Retardation: Definition, Classification, and systems of support. (9th Edition) Washington, DC: American Association on Mental Retardation.

MacMillan, D.L., Gresham, F.M., and Siperstein, G.N (1993). Conceptual and psychometric concerns about the 1992 AAMR definition of mental retardation. American Journal on Mental Retardation, 98, 325-335.

Matson, J. and Barrett, R. (1993). Psychopathology in the Mentally Retarded. Allen and Bacon: Boston.

Menolascino, F.J. and McCann, B.M. (1983). Mental Health and Mental Retardation Bridging the Gap. University Park Press: Baltimore.

Merydith, S.P. (1995). A postmodern definition of mental retardation: Conceptual changes with psychometric uncertainties. Assessment in Rehabilitation and Exceptionality, 2(1), pages 15-23.

Reiss, S., Levitan, G.W., and Szyszko, J. (1982). Emotional disturbance and mental retardation: Diagnostic overshadowing. American Journal of Mental Deficiency, 86, 567-574.

Sevin, J.A. and Matson, J.L. (1994). An overview of psychopathology. In D. C. Strohmet and H. T. Prout (Editors), Counseling and Psychotherapy with Persons with Mental Retardation and Borderline Intelligence (pp. 21-78). VT: Clinical Psychology Publishing.

Szymanski, L.S., Madow, L., Mallory, G., Menolascino, F., Lace, L. and Eidelman, S. (1991). Task force report 30: Report of the task force on psychiatric services to adult mentally retarded and developmentally disabled persons. Washington, DC: American Psychiatric Association.

Wadsworth, J.S., Harper, D.C. and McLeran, H.E. (1995). The transition from work to retirement among adults with mental retardation. Journal of Applied Rehabilitation Counseling, 26(3), 42-48.

Wadsworth, J. (1996). Clinical judgment bias in case management decision making for older persons with mental retardation. Unpublished dissertation, The University of Iowa, Iowa City, IA.

Walz, T., Harper, D.C., and Wilson, J. (1986). The aging developmentally disabled person: review. The Gerontologist, 6, 622-630.

White, M.J., Nichols, C.N., Cook, R.S., Spengler, P.M., Walker, B.S. and Look, K.K. (1995). Diagnostic Overshadowing and mental retardation: A meta-analysis. American Journal on Mental Retardation, 100, (3), 293-298.

Dennis C. Harper, Ph.D. Professor Special Editor Journal of Rehabilitation January 1996