Integrated employment for people with severe physical disabilities; case studies and support issues.

Integrated Employment for People with Severe Physical Disabilities

Supported employment for people with severe disabilities has expanded markedly since its humble beginnings in 1984 (P.L. 98-527; Wehman & Moon, 1988; Kiernan & Schalock, 1986). Starting as an initiative in a few communities in a few states, supported employment is now being implemented in virtually every state in the country (Wehman, Kregel, & Shafer, 1989). The initiative first began with a grass roots concern for the lack of integrated employment opportunities available for people with severe and profound mental retardation (Bellamy, Rhodes, Bourbeau, & Mank, 1986). Only recently has supported employment expanded to include people with other disabilities.

The logic of supported employment is not disability-specific; that is, supported employment can benefit all people who require long-term support to maintain success in employment, whatever the disability label. Supported employment, as a result, has become an initiative that includes people with a variety of disability labels, including long-term mental illness, traumatic head injuries, severe physical disabilities, and multiple disabilities (e.g., Wehman & Moon, 1988).

While people with severe disabilities other than developmental disabilities are now included in the initiative, the vast majority of people with access to supported employment are those labeled mentally retarded (Wehman, Kregel, & Shafer, 1989). As might be expected, the support strategies most often discussed (e.g., Buckley, Mank, & Sandow, in press) have been designed for those people. Recent months have witnessed an increased investment in expanding supported employment to disability groups other than mentally retarded people. Projects are in existence for people with long-term mental illness (e.g., Noble & Conley, 1987; Anthony, Cohen, & Danley, 1988; Isbister & Donaldson, 1987); and people with traumatic brain injury (Kreutzer, & Morton, 1988). Information regarding supported employment has only recently begun to include people with physical disabilities and to address specific support strategies (e.g., Wood, 1988; Sowers, Jenkins, & Powers, 1988; Everson, Hollahan, Callahan, Franklin, & Brady, 1987).

Five Case Studies

The following section describes the employment for five persons with severe physical disabilities who are served by Elliott Bay Employment Services in Seattle, Washington. Not every job placement has been successful. Even so, those who remain employed are successful because the benefits outweigh the difficulties involved, both for them and the employer. Great emphasis has been placed on each participant's job interest. The mean wage was $5.00 per hour, and each person worked between 20 and 40 hours per Prior to entering service with Elliott Bay Employment, none of the participants discussed here had worked competitively or encountered the rigors of daily employment.

June

June was employed as a data entry clerk for a photo lab. In her job, June's responsibilities included entering all photo orders into the computer so they could be tracked through the plant. June brought a number of strengths to this job. She has excellent social skills and clear speech. Prior to the job, June had been at United Cerebral Palsy's Work Activity Center for 5 years. She has been diagnosed as having the following disabilities; spina bifida, meningomyelocele, ilio loop diversion, paraplegia, VA shunt, thoraco vertebra, osteotomy, and borderline mental retardation.

Support issues. Success on the job has required the resolution of a number of support needs, including transportation, grooming, endurance, bowel control and urine bag problems, support from her residence, overdependence on others, attendance, clarification of employer's expectations, and job performance.

Employment status. During the first month of employment, June worked only 7 hours per week. This required 23 hours per week of coordination and support by program staff. After 9 months of employment, June was working 40 hours per week and receiving ongoing support of 2 hours per week. She was laid off in her tenth month of employment, and chose not to be placed in another position. June's supervisor made sure that June took part in all work related social events, to the point where he took responsibility in arranging her transportation. June had numerous friends on the job, some of which she saw away from work. However, she received little support from her residence and was reportedly subject to physical and verbal abuse in her home for working.

Tucker

Tucker works as a data entry clerk for a hardware store. He is diagnosed as having dystonia musclorum deformans, chronic movement disorder, moderate mental retardation, and speech disorder. His job duties at the hardware store include entering inventory changes into the computer, placing labels on new inventory, directing customers to store items, and fronting and facing stock items on shelves. From the time he graduated from high school in 1977 until this job, Tucker stayed home.

Support issues. Issues that required resolution for Tucker to succeed included communication, work place, computer training, restructuring of the job to meet both Tucker's and his employer's needs, gross motor control, endurance difficulties, gaining his mother's support, and employer's acceptance of his appearance.

Tucker's disability was far more involved than the employer had envisioned. The employer had apparently expected to hire someone whose only disability was being in a wheelchair. When presented with Tucker, the supported employment service had to bridge the gap between expectation and reality. Although his mother gave verbal support to his employment, she was concerned about Tucker using public transportation. By the time the employment support service could no longer provide transportation (after 6 months), Tucker's job was important enough to him and his mother that he began to take the bus to and from work. Tucker agreed to use public transportation, though he dislikes it, because he feels he is an intricate part of the hardware store's workforce. He is well liked by his co-workers, with whom he takes breaks and attends work related social events, such as softball games, company picnics and Christmas parties. He arranges transportation to these events with his co-workers.

Employment Status. In his first month of employment, Tucker worked 12 hours a week and received 18 hours in direct support and external coordination per week from Elliott Bay Employment. After 14 months of employment, Tucker works 20 hours a week and receives 1 hour of support per week.

Matt

Matt is employed as a factory worker at a rubber plant, where his duties include hand-packaging O-rings, which involves operating a sealer and an O-rings packaging machine. His strengths on the job include clear speech, ability to transfer himself from his wheelchair, motivation to work, and the use of his left hand. His diagnoses include spastic guadriparesis, athetosis of the right arm, cerebral palsy, progressive scoliosis, and mental retardation. Prior to this job, Matt had been at a work activity center since graduating from high school in 1986.

Support issues. Success on the job has required attention to a number of support needs, including transportation, attendance, interactions with the supervisor, productivity, clarification of job duties, dependency issues, and behavioral control. Rehabilitation engineering on this site has been extensive though simple. For example, a metal guide was placed on the sealer machine which allows Matt to line up the bag through touch rather than sight, and a plastic plate was mounted on the O-ring machine so that O-rings could be slip onto the belt instead of being dropped, which eliminated Matt's need to use a pinching motion of his fingers. These simple devices increased his overall productivity by 30 percent.

Employment status. In his first week of employment, Matt received 25 hours of support from Elliott Bay and worked 8 hours. After 7 months of employment, Matt works 35 hours a week and receives full-time support from Elliott Bay. This support has primarily involved organizing the work flow, tracking productivity, designing fixtures, facilitating an appropriate relationship between Matt and his supervisor, and presenting strategies of maintaining appropriate behavior at work.

Sadie

Sadie is employed as a check proofer in a bank, where her duties involve pulling checks and bills from open envelopes and stacking them into piles, processing ripped checks and removing staples from checks. Her diagnoses include spastic quadriplegia, cerebral palsy and moderate mental retardation.

Support issues. Her support issues have included increasing her work speed, endurance, transportation, inconsistent work performance, dependence issues, perceptual problems, difficulty in comprehending expectations, and a supervisor who expressed fear about Sadie's disability. She has been at home since graduating from high school. Throughout school she was not in integrated classrooms. It was a major adjustment for her to realize the employer had the same expectations for her as he had for other workers, namely, she was expected to perform the whole job, her performance was to be rated by set standards and she would be required to follow instructions.

Employment status. During her first month of employment, Sadie worked 6 hours a week and received 26 hours of support from Elliott Bay Employment. One year later, she is working 20 hours per week, receives 2 hours of support each week from program staff, has established a strong friendship with her supervisor, attends work related social events, and takes breaks with her co-workers. She is well liked and accepted by co-workers.

Gabe

Gabe has been placed in two jobs by Elliott Bay Employment. Initially, he was employed as a film splicer at a photo company. He worked this job for 6 months, with duties including splicing together video film, packaging and labeling the completed orders. His second job was at an artificial tree factory, where his duties included folding leaves, painting and shaping tree stems. Gabe's strengths on both jobs included a willingness to use the bus system, a knowledge of bus routes, the ability to get around independently on crutches, good dexterity, and a positive attitude. His diagnoses include severe sensory neural hearing impairment, cerebral palsy, congenital knee malformation, and borderline mental retardation.

Support issues. Gabe lacks verbal skills and only understands simple written statements. He tends to say "yes" or to appear to agree with statements without necessary understanding the question or direction given. After referral, his support from home appeared insufficient. His home providers believed that the job coach must be licensed in sign language. Messages were not relayed to Gabe, thereby preventing him from attending a job interview. His home provider also did not want him to start work once he was hired. The employment service requested and received the county's assistance in obtaining support from Gabe's residential provider. One month into his first job, he injured his shoulder and was off work for 6 weeks. Upon his return to work, if became evident that his new supervisor was not supportive of him. The new supervisor would not let Gabe use the systems and fixtures that enabled him to do his job. Without the system in place, Gabe could not function in an organized manner. During his first month of employment, he worked 10 hours per week with Elliott Bay Employment providing 30 hours each week in coordination and support. At the time he was laid off, Gabe was working 25 hours per week and receiving 4 hours of support per week.

Employment status. Gabe has been employed for the 7 months at the artificial tree factory. During his first month of employment, he worked 20 hours per week and received 20 hours of support. After 2 months, he became well versed in his performance systems and the job coach began to fade. Presently, he works 20 hours a week and receives 2 hours of support. He has established friendships that are strong enough that co-workers have learned sign language on their own time so they could better communicate with him.

Overview of Support Issues

Many of the issues faced by people with physical disabilities in integrated employment parallel those of other people receiving supported work services. It is not the uniqueness of specific issues that are different. Rather, differences appear in the extent of coordination and the variety of supports and resources required. These five examples present different employment scenarios and support issues. However, given their individual differences, there are a number of recurring issues which should be considered in supporting people with physical and multiple disabilities in community jobs.

For the purposes of this article, these issues are organized into three main categories:

* The category of Individual Training and Direct Services Issues addresses client needs in terms of physical supports, skills and behaviors.

* Employer Support Issues. These employers were not familiar with employing persons who have multiple disabilities, although they did indicate an interest in hiring someone with a disability. However, these employers apparently had not envisioned a person with such a variety of disabilities. Employers frequently indicated uncertainty when it was difficult to communicate with the person or when it was necessary to use an alternative method of communication. Like the general public, businesses have had very limited exposure to people with multiple disabilities. Even so, four of these workers have developed notable relationships with co-workers.

* Systemic and External Coordination Issues. Perhaps, because people with severe multiple disabilities have traditionally been isolated from the community, they frequently have not learned basic community skills, such as wheelchair safety when crossing streets, use of public transportation, interactions with strangers, and dressing appropriately for the season. This area examines some of the external structures necessary for a placement to succeed.

Table 1 depicts these issues and support strategies. Table 2 presents a summary matrix of issues and basic strategies.

Table : Table 1 Support Issues and Responses

Issue Support Response

Training & Direct Service

Grooming                   * Provided transportation and
(three sites)                appointments for haircuts and shopping
                             for work clothing.
                           * Arranged Vocational Rehabilitation and
                             JPTA payment.
                           * Extensive work with home providers.
                           * Individualized training at home on
                             clothing care.
                           * Set up bathing and grooming schedule.
Bowel/Bladder Control      * Set up frequent bathroom schedule.
(one site)                 * Requested specialist to look at
                             equipment.
                           * Worked with nursing staff to set up
                             home schedule.
                           * Went to residence daily to insure
                             proper preparation.
Social Skills & Behavior   * Restructured jobs.
(all sites)                * Provided training on listening,
                             courtesy and paraphrasing,
                             ramifications of actions.
                           * Held `team' meetings with residential
                             supports.
Expectations & Apparent    * Arranged counseling.
Learned Dependency         * Trained employer to encourage
(all sites)                  independence.
                           * Provided training on `we will help you
                             learn it but won't do it for you.'
                           * Provided training on clarification and
                             understanding of expectations.
Endurance                  * Consultation with occupational
(all sites)                  therapist and rehab engineer.
                           * Adaptive devices for comfort and
                             position.
                           * Designed fixtures for speed, job
                             modification.
                           * Coordinated home support.
                           * Modified jobs for ease in performance.
Communication              * Taught use of pictures for
(two sites)                  communication.
                           * Set up poster signs for co-worker
                             involvement.
                           * Provided signing lessons and
                             interpreter.
                           * Taught co-workers to word questions in
                             a manner that they could be answered
                             in simple statements.
                    Issue                  Support Response

Employment Support Issues

Employer/Co-Workers        * Provided information to employer and
Uncertain                    co-workers.
(three sites)              * Supported co-workers who were
                             positive.
                           * Started job with restricted job
                             duties, then expanded job later.
Supervisor Support         * Frequent supervisor contact.
(two sites)                * Arranged for press coverage about the
                             job.
                           * Began working through a more supportive
                             supervisor.
Employer Uncertain on      * Provided training to supervisor on how
How to Supervise             to give instructions and negative
(all sites)                  feedback.
                           * Provided training on how to interpret
                             and accept instructions.

Systemic & External Coordination

Transportation             * Provided travel and safety training.
(all sites)                * Used taxis and Seattle Personnel
                             Transportation.
                           * Worked with city for curb cuts,
                             putting in lights, cross-walks and
                             signs.
                           * Lights for wheelchairs (paid for by
                             DVR).
Apparent Poor Job Match    * Changed job within business.
(one site)                 * Program performed job duties while
                             developing ways to modify job for the
                             individuals.
Health                     * Worked with home on self-care.
(four sites)               * Planned intervention to increase
                             working time.
                           * Worked with individuals to understand
                             the impact of being tired had on one's
                             body and disability.
Family/Residence           * Frequent home contacts.
(three sites)              * Modified schedules.
                           * Coordinated interventions for personal
                             care, schedules.
                           * Kept families informed.
                           * Recommended marital counseling.

[Tabular Data Omitted]

Discussion

This program was founded on the assumption that reasonable paying job opportunities were available for people with severe multiple disabilities if a place-train supported work model successfully matched clients and jobs, developed employers carefully and used available technology. Although this assumption has proven to be accurate, it also over-simplifies the issue. It fails to consider the complexity of coordinating the supports needed and the limited opportunities available in natural, community settings.

These case studies provide information about the successes of clients and the range of support needed for ongoing employment. From the experience with these cases, several points are clear.

* Many people with severe physical disabilities or multiple disabilities can work successfully if provided individualized support.

* Support requirements were intensive, at least initially, in each job situation.

* Expectations, on the part of the worker and the employer, must be addressed directly from the beginning.

* Family or residential support is extremely important to success.

* Job matching must be done carefully if integration is to occur.

* Costs are high for planning and ongoing support.

To be considered severely disabled and yet able to function, even with supports, in the "able-bodied" world is a notable task. The persons described here have spent years in environments with few opportunities and expectations. The routines and expectations in a 120-bed institution are often the antithesis of requirements in a competitive job. Some severely disabled people have never been allowed to participate with independence and, in fact, may have been taught to be overly dependent on others - sometimes, strangers - to help with basic needs. Some disabled people are encouraged to rely on assistance even when assistance may not be needed. It is critical for employment support personnel to understand this so they may provide clarification and support to the client on how independent and interdependent behaviors can enhance one's image with co-workers and employers. It is important that the job coach not consider such behaviors manipulative.

Another side of the issue is that significant others - frequently, paid staff - may have an investment in a client being dependent and may harbor fears about what will occur once that person begins work. Thus, it is necessary for the supported work service to be capable of providing intensive coordination and individualized case management to the client. Residential providers and families need support and assistance in understanding the importance of their role in helping the client cope with his or her changing expectations and definition of success. All too frequently, people with severe disabilities and multiple disabilities have never been asked to view themselves as capable and contributing citizens, even though projects such as the one described here support this more positive image.

The experience with these five clients also suggests that rehabilitation engineering is often expensive and not always readily available. High technology does not appear to be a "cure-all." Often, the key in these situations was finding a job that highlights a person's strengths rather than providing expensive equipment. It is more difficult to create a good job match for a client than to figure out technically how to make a job work for that person. If elaborate and expensive rehabilitation engineering proves necessary, perhaps the quality of the job match needs to be examined. Often, technological solutions can be found by redesigning jobs or devising simple, inexpensive fixtures.

Each of the persons in these case studies now have jobs that match up with their personalities and interests, and with employers who are interested. These factors appear to set the right environment for integration to occur on the job. People in various work environments were receptive to each of these persons and co-workers took on active roles to ensure that the severely or multiply disabled employee was accepted. It has been the experience of this project that if a business is willing to hire someone who has multiple disabilities, the business is also willing to actively help that person integrate socially into the work environment.

Finally, we must state that this project is costly, with an average placement costing about $16,700. Since the project has only been in existence for 16 months, there is too little data to determine if the cost will decrease significantly over time. This raises the question of how willing and capable the service system is to support people with severe physical disabilities in competitive employment. Even while it is popular to place people who are severely physically disabled into competitive employment, access to resources has been limited.

Conclusion

After evaluating the success of supported employment in the lives of the five persons described in this article, it is clear that both systematic barriers and individual support issues have required significant attention. The strategies reviewed here have addressed some of these barriers and have shown that the issues confronting severely and multiply disabled people in employment can be solved. As with people with other disability labels, individualized support and ongoing problem solving has resulted in successful employment experiences. However, this requires significant financial and support resources. Some may ask if we can afford to do this; yet, in terms of the alternative - idleness, and the high cost of supporting that idleness - can we afford not to? Certainly, these five clients would not have entered employment without support services. I believe their success sends a strong message, and that it is time that we view all people with physical disabilities as having the potential to succeed in integrated employment.

Bibliography

1) Anthony, W.A., Cohen, M.R., & Danley, K.S. (1988). The psychiatric rehabilitation model as applied to vocational rehabilitation. In J. Ciardiello & M. Bell (Eds.), Vocational rehabilitation of persons with prolonged psychiatric disorders. Baltimore: Johns Hopkins University Press.

2) Bellamy, G.T., Rhodes, L.E., Bourbeau, P.E., & Mank, D.M. (1986). Mental retardation services in sheltered workshops and day activity programs: Consumer outcomes and policy alternatives. In F. Rusch (Ed.), Competitive employment issues and strategies (pp. 257-271). Baltimore: Paul H. Brookes.

3) Buckley, J., Mank, D.M., & Sandow, D. (in press). Support strategies in community employment of persons with severe disabilities. In F. Rusch (Ed.), Supported employment: Issues and strategies. Baltimore: Sycamore Press.

4) Everson, J., Hollahan, J., Callahan, M., Franklin, K., & Brady, P. (1987). Getting the job done: A manual for the development of supported employment programs for people with physical and multiple disabilities. Washington, DC: United Cerebral Palsy Association, Community Service Division.

5) Isbister, F., & Donaldson, G. (1987). Supported employment for individuals who are mentally ill: Program development. Psychosocial Rehabilitation Journal, 11(2), 45-54.

6) Kreutzer, J.S., & Morton, M.V. (1988). Traumatic brain injury: Supported employment and compensatory strategies for enhancing vocational outcomes. In P. Wehman & M.S. Moon (Eds.), Vocational rehabilitation and supported employment (pp. 291-311). Baltimore: Paul H. Brookes.

7) Noble, J.H., & Conley, R.W. (1987). Accumulating evidence on the benefits and costs of supported and transitional employment for persons with severe disabilities. Journal of The Association for Persons with Severe Handicaps, 12(3), 163-174.

8) Public Law 98-527: Developmental Disabilities Assistance and Bill of Rights Act. (1984). Washington, DC: 98th Congress.

9) Sowers, J.A., Jenkins, C., & Powers, L. (1988). Vocational education of persons with physical handicaps. In R. Gaylord-Ross (Ed.), Vocational education for persons with handicaps (pp. 387-416). Mountain View, CA: Mayfield.

10) Wehman, P., & Moon, M.S. (Eds.). (1988). Vocational rehabilitation and supported employment. Baltimore: Paul H. Brookes.

11) Wehman, P., Kregel, J., & Shafer, M.S. (1989). Emerging trends in the national supported employment initiative: A preliminary analysis of twenty-seven states. Richmond: Virginia Commonwealth University, Rehabilitation Research and Training Center.

12) Wood, W. (1988). Supported employment for persons with physical disabilities. In P. Wehman & M.S. Moon (Eds.), Vocational rehabilitation and supported employment (pp. 341-363). Baltimore: Paul H. Brookes.

Ms. Cooper is Program Manager, Elliot Bay Employment Services, Seattle, Washington; Dr. Mank is Assistant Professor, Division of Rehabilitation and Special Education, University of Oregon, Eugene.