Roselyn M. Dixon and Catherine A. Reddacliff

E-mail address: rdixon@uranus.nursing.su.edu.au

Paper presented at Researching Education in New Times, AARE Conference, Brisbane, 2 December 1997.

This paper reports the results of a qualitative research study of vocationally competent people with mild intellectual disabilities. The study identified many factors inside and outside the individual that allowed them to maintain employment. One of the most significant factors that emerged from the study was the importance of family to the individuals' efforts to maintain employment. The participants ranged in age from 19-30 years and were clients of a competitive employment and training program. The participants were purposely sampled using the criteria of having maintained competitive employment for 6 months. The data were collected through semi-structured interviews with the participants and their parents. The results indicated that certain family characteristics led to more successful employment outcomes.

Young adults with mild intellectual disabilities can successfully obtain and maintain competitive employment. Competitive employment allows young adults to develop their "identities as workers" and also their vocational skills. Additional benefits include opportunities to build self-confidence, independence from family, and social competence (Dixon & Reddacliff, 1996; Riches, 1993 ; Turnbull, Turnbull, Bronicki, Summers & Roeder-Gordon, 1989).

Kuh (1990) identified three major developmental goals for young adults with disabilities: obtaining and maintaining employment, learning to live away from home, and developing social networks. Family members with disabilities influence the family system and therefore the ways in which these goals are addressed. "Families play a critical role in helping persons with developmental disabilities to live independently" (McCallion & Toseland, 1993, p.579). Lustig and _Thomas (1997) reported that young adults with developmental disabilities usually live with their parents, at least in their twenties. At a time when parents are usually withdrawing support from their children as they move into the work force, families of young adults with developmental disabilities are often required to increase their level of involvement (Lustig & Thomas,1997; Thorin, Yovanoff, & Irvin, 1996). As a result, the period of transition from school to work is a period of high stress for such families ( Krauss & Giele, 1987; Lustig & Thomas, 1997; McCallion & Toseland, 1993).

Separation from the family is an issue for these young adults as they "launch" into their working lives (Gath, 1993, Krauss & Giele, 1987). They begin to establish roles and identities outside the home. The families themselves are frequently torn between the perceived need to protect the young adult from failure and exploitation while simultaneously encouraging independence (Freedman & Fesko, 1996; Thorin et al. 1996). Parents sometimes place restrictions on opportunities to try new activities and to develop increased personal autonomy (Thorin et al., 1996; Yura, 1987; Zetlin & Turner, 1985).

One of the major consequences of disability for many families is decreased participation in aspects of community living such as employment, recreation and social activities (Franklin, 1977). Young adults with disabilities are much more likely to be unemployed or employed only part-time (Kuh, 1990; Turnbull et al., 1988) and to have limited opportunities for social interaction outside the family (Kuh, 1990; Yura, 1987).

On the other hand, greater family cohesion is a positive effect of having a family member with a disability (Darling, 1979 cited in Tan, 1994; Yura, 1987). Cohesion involves the development of both family unity and the individuality of each of its members. Support networks involving grandparents and extended family members are positively correlated with adjustment for both the individual with disabilities and the family system (Yura, 1987).

Patton, de la Garza and Harmon (1997) pointed out the importance of family support in employment success for adolescents with mild disabilities. "To secure and maintain employment, individuals with mental retardation must exhibit behaviours that are valued and considered appropriate in employment settings" (Chadsey-Rusch, 1986, p.273). The skills of personal and social interactions are primarily learned within the family and family members provide role models for work behaviours such as attitude to work, punctuality and attendance (Clear & Mank, 1990).

Clear and Mank (1990) found that parents were the main source of support for their sample of employees with intellectual and developmental disabilities. Parents were found to have a major role in advocacy and liaison with service agencies and employers. The extent of this involvement was measured and shown to be considerable in terms of time investment. Zetlin and Turner (1985) noted that a significant proportion of young adults with disabilities in their study depended on their parents for protection and guidance even after leaving home.

According to Freedman and Fesko (1996), however, little is known about the specific roles which families play in the working lives of their relatives with disabilities.

The study reported here examined the perspectives of young adults with mild intellectual disabilities on their work, family and social lives. The findings described are concerned with the family variables. These young people were initially supported in their employment by a competitive employment and training agency in the south-west metropolitan area of Sydney. The agency identified these clients as being vocationally competent because the agency's support had been withdrawn and the clients had continued to maintain employment for a period of at least 3 months.

Qualitative data were gathered using a semi-structured interview with the emphasis on the clients' perspectives of their work, family and social lives. Informed consent was obtained from each client prior to the interview and assurance given of confidentiality. Interviews were audio-taped with the clients' permission and transcribed in full. Researchers made reflective memos following each interview.

Data were analysed according to thematic content (Bogdan & Biklen,1992)

The literature was searched after data collection in order not to bias or pre-determine the outcomes.

RESULTS

The participants' ages ranged from 19 to 30. All participants were living at home with their families except for one female who was married two weeks prior to the interview. Examples of jobs held by the participants were gardener, food preparation worker, cleaner, receptionist, hospitality worker, factory worker and car yard hand. Some of the clients had been employed in several jobs.

Many themes emerged as a result of the analysis of the interviews. One of the most significant themes that related to families was that most clients saw their families as being highly supportive of their efforts to gain and maintain employment.

All participants were members of intact families. No families in this study had experienced family breakdown through divorce or separation. In two cases the participant had a step-father, but in both of these the biological parent had died and there was a subsequent remarriage.

The families lived in the same area for many years and owned their own homes, except in one case. Families generally had lower-middle level incomes and in all but one case both parents were employed.

participants in this study identified many different ways in which their families were supportive. The first area could be conceptualised as practical assistance.

Many parents provided practical assistance in the areas of accommodation, laundering of uniforms, money management and transport.

One client depended on both parents for various forms of practical assistance:

Another client said:

Practical assistance was also given by families in the areas of initial contact with service agencies and assistance with getting jobs.

One mother made the initial contact with the employment service:

Another mother helped her daughter by encouraging her buy a newspaper every day and going with her to the Commonwealth Employment Service. Another mother assisted her daughter by reading and editing her job applications.

The families had both a male and female role model for work behaviour and work ethic. In all but one case, both parents held jobs. Clients generally had older siblings, as well as parents, who had been employed for several years. One client had neither parent working but had older siblings who were employed.

Clients felt that they were motivated by their families to stay in a job and to value work. Some families offered verbal encouragement and emphasised work-related goals:

The families in this study were highly supportive of their family members. However, a very significant theme emerged in that these families exhibited high levels of protection for young adults in our culture.

The launching stage into adulthood is when young adults prepare for separation from parents. Whilst emphasising the need to gain and maintain a job, many parents were less likely to encourage the acquisition of the other goals of young adulthood such as learning to live independently and establishing social networks outside of the family.

There were varying levels of independence exhibited by the participants. Some participants demonstrated independence in being able to handle travel, driving, recreational activities and obtaining employment without assistance. Conflict with parents arose over participation in activities which were seen as being more adult or having a significant element of risk, for example, consuming alcohol or travelling overseas alone.

Some parents seemed to have difficulty in 'letting go'. They were afraid to allow their children to fail. They also seemed over-involved in some day to day decision-making and their children's social activities.

All of the clients were living at home and depended on their parents for tasks of daily living such as meals, laundry and cleaning which they would have to perform themselves if they were living independently.

Finances were a particular area of concern for parents. Some clients were dependent on their parents for saving , budgeting, and the management of loans.

Most clients had control of their own bank accounts.

A mother commented:

One mother stated that she keeps her son's access card:

One mother made sure her son ate before he went to work and laid out his uniform on his bed. Two participants said that their mothers usually checked their appearance before leaving for work.

Another area of protection was interacting with professional agencies such as Social Security, for example, if a pension needed reinstating. At least two clients' mothers went with them to the Commonwealth Employment Service.

Many of the parents were concerned about the possibility of exploitation in the workplace and often initiated contact either with an employer or with the employment agency when trouble arose.

Difficulties included exploitation from co-workers, unfair dismissal and unrealistic demands:

Many of the families were very protective of their young adults outside of the work place as well. This included protection in the areas of money, transport, supervision and friendships outside of work. Examples of comments by parents were:

One parent was concerned about supervision of her son during non-working hours because of his part-time employment:

One client wasn't allowed to look for work in the city because her parents believed that train travel was unsafe.

Individuals were rarely left alone. An element of supervision existed which is more characteristic of an adolescent developmental stage.

A related but significant finding was that of protecting these young adults from risk and/or failure. Many of the families in this study had curtailed their children's activities as a result of them gaining a job because they were afraid it would be 'too much' for them even though many of the jobs were part-time.

Parents seemed to be unaware of some of their children's competencies and tended to exaggerate difficulties and underestimate what they could do.

Many of the parents were concerned about their young adults involvement in the research. Some stayed in the room and clarified responses and corrected misunderstandings. Whilst this allowed researchers to gain an understanding of family functioning it is indicative of high level of responsibility that some parents (particularly mothers) still have towards young adults with mild intellectual disabilities. It was indicative of this responsibility that mothers often used 'we' when they talked about future plans and past achievements.

There was an emphasis on participation in normal activities for both the family as a whole and for the individuals as members of the family system.

Families of these clients engaged in activities which demonstrated the normalcy of family life. Family activities included attending church, shopping, movies, holidays, parties (particularly 21st _birthdays), visiting grandparents and clubs, playing and watching sports.

A large majority of the participants engaged in recreational pursuits which did not always include their families. Examples of such activities were sports, dancing, going to clubs or the movies with friends and involvement in community groups. Three clients had few social contacts outside of their families. For example one client watched his brothers play sports but did not participate himself and another client went ten-pin bowling with her father's social group.

Families had goals that followed the normal developmental periods. All of the clients wanted to learn to drive a car and pass the test for a driver's licence. Five clients had already obtained a driver's licence and at least four were currently learning.

In spite of the independence that the families encouraged the families were fairly closely bonded. Many of the clients were quite enmeshed in their families' social activities. They often went to clubs and on outings and holidays with their parents and/or siblings.

When asked, few of the clients had plans to establish independent living arrangements. One client's mother said she would find the place if he wanted to move out but he said "I like it at home". Another client said that he would not be leaving home for at least ten years.

Most of the clients in this study had regular contact with a _valued family member outside the nuclear family. In most cases this was a grandparent and in one case it was an uncle. These contacts were indicative of the importance that these families seemed to place on staying in regular social contact with their families and maintaining strong support for family members.

Families contributed to the vocational success of the young adults by providing stability, moral support and practical assistance such as transport. Family members were often called on to liaise with service agencies and to network with the local community in finding jobs. These findings were consistent with those of Freedman and Fesko (1996) and Clear and Mank (1990).

Concerns of parents about exploitation in the work place supported previous findings by Freedman and Fesko (1996). Parents were worried about the young adults’ interactions with supervisors and co-workers, and they feared a lack of acceptance in the work place.

Out of the work place parents were protective of their children venturing into new situations. In previous literature it has been suggested that young adults with intellectual disabilities be allowed to try new activities which have a normal, but not extraordinary level of risk (Thorin et al. 1996, Yura, 1987). It is also vital that parents recognise the need of these young adults to establish a social life of their own (Thorin et al., 1996).

Goals consistent with cultural norms such as establishing relationships with the opposite sex and learning to live away from home were not actively encouraged by these families. Most parents expected their children to achieve these goals in the future, perhaps at a later time than would be expected for the regular population. Gath (1993) warned that if independent living arrangements are not established by the time siblings leave home then young adults with intellectual disability may never separate from their parents.

Most families in this study exhibited normal levels of cohesion. They showed unity at times but they also allowed individual members to engage in independent activites outside of the family. The goal of owning and driving a car was very important to the clients. This goal appeared to take on significance for the clients as a symbol of total acceptance into society and independence from their families.

However, a small number of the clients were overly enmeshed in their families. This seemed to be reciprocal They were neither encouraged not did they express the need to establish autonomy.

The fact that most clients and their families had regular contact with their extended family network signified the importance placed on maintaining strong support for family members.

Bogdan, R. C. & Biklen, S. K. (1992). Qualitative research for education: An introduction to theory and methods. 2nd edition. Boston: Allyn & Bacon.

Chadsey-Rusch, J. (1986). Identifying and teaching valued social behaviours. In F. R. Rusch (ed.), Competitive Employment Issues and Strategies. Baltimore, MD: Brooks.

_

Clear, M. E. & Mank, D. M. (1990). Supported and competitive employment outcomes and sources of support for individuals with disabilities in integrated jobs in New South Wales. Australia and New Zealand Journal of Devlopmental Disabilities, 16(3), 245-257.

Dixon, R. M. & Reddacliff, C. (1996). Vocational competence in young adults with intellectual disabilities. Paper presented at ERA-AARE Conference, Singapore, November.

Franklin, P. A. (1977). Impact of disability on the family structure. Social Security Bulletin, 40(5), 3-18.

Freedman, R. I. & Fesko, S. L. (1996). The meaning of work in the lives of people with significant disabilities: Consumer and family perspectives. Journal of Rehabilitation, July/August/September, 1996.

Gath, A. (1992). Changes that occur in families as children with intellectual disability grow up. International Journal of Disability, Development and Education, 40(3), 167-174.

Krauss, M. W. & Giele, J. Z. (1987). Services to families during three stages on a handicapped person’s life. In M. Ferrari & M. B. Sussman (eds.), Childhood Disability and Family Systems, pp. 213-229, New York: Hawthorn Press.

Lustig, D. & Thomas, K. (1997). Adaptation of families to the entry of young adults with mental retardation into supported empoyment. Education and Training in Mental Retardation and Developmental Disabilities, March, 21-31.

MacCallion, P. & Toseland, R. W. (1993). Empowering families of adolescents and adults with developmental disabilities. Families in Society, 74(10), 579-587.

Patton, P. L., de la Garza, B., & Harman, C. (1997). Employability skills + Adult agency support + Family support + On the job support = Successful employment. Teaching Exceptional Children, 29(3), 4-10.

Riches, V. (1993). Standards of Work Performance. Sydney: Maclennan and Petty.

Turnbull, H. Rutherford, Turnbull, A. P., Bronicki, G. J., Summers, J. A. & Roeder-Gordon, C. (1988). Disability and the family: A guide to decisions for adulthood. Baltimore, MD: Brooks.

Tan, L. (1994). Aspects of disability: The effect of a handicapped child upon a family. Professional Care of Mother & Child, 4(1), 10-12.

Thorin, E., Yovanoff, P. & Irvin L. (1996). Dilemmas faced by families during their young adults' transitions to adulthood: A brief report. Mental Retardation, 34(2), 117-120.

Yura, M. T. (1987). Family subsystem functions and disabled children: Some conceptual issues. In M. Ferrari & M. B. Sussman (eds.), Childhood Disability and Family Systems, pp. 135-151. New York: Hawthorn Press.

Zetlin, A. G. & Turner, J. L. (1985). Transition from adolescence to adulthood: Perspectives of mentally retarded individuals and their families. American Journal on Mental Deficiency, 89, 570-579.