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Independence and the individual with severe disabilities.

Independence and the Individual with Severe Disabilities

In the past, children with severe intellectual and physical disabilities were often considered unable to learn, non-productive and non-functioning. Parents were advised to place these children in an institution for the good of the entire family. It is now known that individuals with severe disabilities can and do learn. Many changes in laws and cultural attitudes have taken place, particularly since the Rehabilitation Act of 1973 and the congressional mandates of the seventies. As more options become available in independent living and competitive employment, a possible end result could be acceptance for all individuals within society. But in the process of trying to facilitate welcome change, could the most important concept of all, the right to self-determination, be lost? As individuals with severe disabilities approach adulthood, what choices will be theirs?

The young adults now making the transition from special education to adulthood, are the first generation to receive the advantages of a free and appropriate education under P.L. 94-142 (McDonnell, Wilcox, & Boles, 1986). Rehabilitation will have an importnat part to play in many of their lives.

Wright's (1983) basic philosophical tenets for rehabilitation give certain value-laden beliefs, goals and strategies as guidelines including: (a) the need for all individuals to receive respect and encouragement, regardless of disabling condition; (b) a recognition of environmental issues and their impact on disability; (c) the right of self-determination, or client participation in the rehabilitation process by considering their own unique strengths and needs; (d) a need for cooperation between professionals, agencies and families in providing rehabilitation services; (e) dealing with the client as an individual, particularly when applying predictor variables based on group outcomes; and especially (f) the right of individuals with disabilities to full participation and integration into society, and the general life of the community.

Vocational Rehabilitation (VR) is a process based on these principles for developing the potential of individuals with disabilities, with gainful employment as the goal. If the individuals with various disabilities meet the requirements for eligibility, VR services are provided to give them the power and ability to reach the successful outcome of employment. The requirements for eligibility include a medically defined disability that creates a substantial handicap to employment, and a reasonable expectation that the services provided will enable the invididual to obtain gainful employment (Rubin & Roessler, 1987). Although these requirements seem simple and reasonable, they create a substantial barrier to those unable to meet them. Moreover, the Rehabilitation Act of 1973 requires that services be provided those with most severe disabilities before serving those with less severe disabilities (Rubin & Roessler, 1987). According to McDonnell, Wilcox, and Boles (1986) major barriers to young adults with severe disabilities include: (a) significant shortages and long waiting lists for community-based vocational and residential service programs; (b) ineffective programs; (c) lack of information on the size of the population who will need these services and the time limited protection of P.L. 94-142.


The greatest service possible to individuals with severe disabilities would be to increase their independence, or ability for self-determination, to the fullest extent possible. Because this is a quality of life issue rehabilitation workers must be sensitive, not only to development of skills necessary for living and working in the community, but most importantly, to the wishes and feelings of the individual (Schalock, Harper, & Carver, 1981).

In the early years of life, it is unclear what level of independence and self-determination can, or will be attained. This is particularly true of an individual with severe disabilities. It has long been considered important to maximize growth and development as early as possible. A "normal" or non-disabled child begins making choices by communicating a request for a drink or a favorite food. Young adults with severe disabilities, must have the same choices. Ability for "normal" forms of communication, such as speech, vision, etc., may be inhibited or impossible. Observation of these responses may be obvious in the case of crying, laughing, or smiling. But other indicators may be more subtle. There may be slight changes in head position, motor activity, or changes in vocalization. In order to interpret these indicators, family members and rehabilitation workers regard all behavior as possible efforts in communication (Brown 3 Lehr, 1989). Individuals with severe disabilities may need time to process information and respond. They may feel great frustration at being ignored or misunderstood. But, over a period of time, observations can be more accurately interpreted. Therefor it becomes crucial that parents, educators, and professionals closely observe reactions that may indicate like, dislike, or preferences to different activities. Though they may not understand how best to communicate their desires, individuals with severe disabilities know what makes them happy (Brown & Lehr, 1989).

Independence and self-determination are clearly desired, but most individuals with severe disabilities often have very little control over their lives. They are taught, transported, assessed and evaluated with little possibility of input or understanding. Even the assessments most commonly used are often inappropriate (Patterson, Buckley, & Smull, 1989). A series of studies on graduates of special education (Hasazi, Gordon, & Roe, 1985; Mithaug & Horiuchi, 1983; Wehman, Kregel, & Seyfarth, 1985) showed that special education graduates did not fail in special education programs, they failed when they were on their own (Mirhaud, Martin, Agran, & Rusch, 1988).

All available ways to foster independence and self-determination should be investigated. Using success techniques as a basis, a new teaching approach has recently been developed to encourage independent performance and self-evaluation (Mithaug, et al., 1988). Using this and other consistent strategies, programs can go beyond accumulated observation to independent action from the individuals themselves. When will the professional know if these programs are effective? Perhaps when individuals can do for themselves what was previously done for them.

Integration in Society

It is important that both individuals with disabilities and individuals without disabilities be prepared to live, learn and work together in the same neighborhood (Pumpian, West, & Shepard, 1988). With the first generation of special education graduates since P.L. 94-142, the hope would be that they have received the benefit of interaction with their nondisabled peers on publc school campuses.

If Wright's (1983) basic tenets are to be followed, the focus in an integrated environment should not be directed toward elimination of all deviance, but rather on increased tolerance and support for those who may exhibit atypical behavior. Elimination of all deviance in society, is not possible, or desirable. Interaction between groups greatly benefits all who are involved. Perhaps decreasing deviance and increasing competence should be viewed in a different perspective, that of increasing personal choice and self control (Brown & Lehr, 1989).


Another dilemma facing the person with severe disability is vocational training and employment. Traditionally, individuals were trained until they were job ready before placement was considered. The problem for individuals with severe disabilities is that skills acquired were not readily generalized from the training programs to the demands of the new environment (Schalock & Harper, 1978). Individuals with severe disabilities had practically no chance of progressing through the continuum of services from adult day programs, to the less restrictive sheltered workshops to competitive employment. Though employment options within this continuum are community-based, they are sheltered within the community, and may become like the institutions they were meant to replace (Schlock & Harper, 1978). Supported employment process addressed this problem by assessing the individual strengths and limitations, finding a possible placement, then training the skills needed to place them in a selected job (Pumpian, West, & Shepard, 1988).

Supported employment, however, may be difficult to implement, particularly for those with the most severe disabilities. Although Wehman and Moon (1988) advocated for "zero exclusion", there are considerations of eligibility, tolerance within society, etc. Supported employment has offered solutions for many individuals, but has also raised many questions. Should supported employment options be restricted by intelligence? What choices should be available to individuals with severe disabilities and their families? What about individuals who do not reach higher levels of productivity? Before any of these questions can be answered satisfactorily, many more innovative job development strategies need to be explored (Brown & Lehr 1989). Wehman, Hill, Wood, and Parent (1987) offered some possible suggestions: (a) making placements more flexible, (b) allocating more intervention time, (c) developing support systems for job trainers, (d) providing total financial support to the employer and (e) initiating more innovative adaptations to possible jobs. Whatever the choices for these adults may be, Ferguson and Ferguson (1986) stated that it should never be a debate of individual abilities. Schalock and Harper (1978) found that success in independent living and competitive employment was related to certain skills and not necessarily the level of intelligence. They also observed job satisfaction as being very important.

O'Brien (1987) advocated a new way of thinking: instead of fitting people into services, develop supports that enable the individual to lead a meaningful life. When parents of young adults with severe disabilities were asked the most important issues in choosing vocational placement, they wanted activities that led to individual interest and challenge rather than simple security. The important issue was what their child could do (McDonnell, Wilcox, Boles, & Bellamy, 1985). "Choosing how to live one's life is the 'catalytic trigger' of independence." (Brown and Lehr [1989, p. 269]).

Functional Skills

Parents and professionals have struggled to teach individuals with severe disabilities many skills in order to function within their environment. What happens if these skills are no longer considered important for employment, or the individual is no longer required to use them (McDonnel, Wilcox, & Boles, 1986)? What happens if the individual is only able to have partial participation in the skill? While integration teaches certain skills by "normal" association, what hapens if the process of learning occurs too slowly, or not at all? Individuals with severe disabilities are vulnerable to learned helplessness (Brown & Lehr, 1989). Every effort needs to be taken to increase experiences of personal and environmental control. Focusing strictly on specific skills needed for employment may contribute to "learned helplessness" if the individual cannot function independently from place to place throughout the day? An individual who cannot appropriately care for him or herself in a public restroom is severely impaired. The skill of preparing one's own lunch may be as important to avoiding helplessness as the skill of sorting utensils for the table. While competitive employment will increase an individual's feelings of productivity and self-worth, caring for oneself, even if only in partial participation can be equally valuable. These functional skills are addressed by some professionals (White & Biller, 1988), but too often, particularly during and after transition, these skills are forgotten.

Could individuals with disabilities teach and help each other with proper supervision? For those individuals in community-based programs living at home, this learning time could also provide peer relationship patterns and friendships. If professionals accet the premise that individuals with severe disabilities continue to learn, should a portion of their day be used to pursue learning in all areas of their lives?

Independent Living

Due to the protective laws now in force, individuals are living at home while receiving community-based instruction where they live, work and play. According to Brown and Lehr (1989), the ideal normalized independent living arrangement may be in the home with the individual's family. Certainly this will only be successful if the family is committed to the arrangement. The desires of the individual regarding independent living arrangements should be considered first whenever possible. This decision may also depend on the level of certain basic survival skills for independent living. However, the individual needs and concerns of the family should also be important in determining placement. If the date of the individual and the family is for the person to live at home, encouragement and necessary supports should be available, or the family may be forced to consider outside placement. These supports may depend in part on funds made available by state, federal and other agencies, including adequate respite care for the family. Whatever the decision, it must concern the individual and the family, not professional strangers.

For individuals still living in facilities, deinstitutionalization should proceed in such a way as to minimize the significant psychological adjustments and maximize opportunities for self-determination. Care should be taken to keep these options as normalized as possible, to avoid reflecting more restrictive and outdated institutions replaced. For instance, individuals would need to be involved in community-based vocational programs or other employment opportunities during the hours not normally at home.

While deinstitutionalization is definitely in accordance with the right of the individual to full integration and participation in society, it also creates another dilemma. Should the transfer from the institution come at the expense of the individuals with severe disabilities and their families who have chosen to remain in the community and prepare for community-based instruction where they live, work and play (McDonnell, Wilcox, & Boles, 1986)? Should all these individuals be required to compete for services?

This paper has discussed different dilemmas in fostering and respecting the independence of the individual with severe disabilities. More can be done within levels of government and service agencies to resolve these dilemmas. Most importantly, there should be more interagency planning and involvement to reallocate services so that the main goals of each agency remain intact, yet more individuals are served (McDonnell, Wilcox & Boles, 1986). There should be increased encouragement for family involvement.

Independence, particularly the right to self-determination, is perhaps the most important concept for individuals with severe disabilities. One of the best ways to judge the importance of the word, independence, is to look at the perceptions of those impacted. For example, individuals served through the Supported Housing Demonstration Project in Pittsburgh, Pennsylvania described independence in the following ways: (a) making your own decisions, (b) self-reliance and doing for one's self, (c) taking responsibility for one's life. Perhaps the best comment was, "Independence is in your heart." (TASH Newsletter, January 1988; p. 5)


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Wright, B. (1983). Physical disability: A psychological approach (2nd ed.). New York: Harper & Row.

ELIZABETH B. PRICE is a graduate student in Rehabilitation Counseling at Utah State University.
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Author:Price, Elizabeth B.
Publication:The Journal of Rehabilitation
Date:Oct 1, 1990
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