Preventing
Secondary Conditions Associated with
Spina Bifida or Cerebral Palsy Symposium
February 17-19, 1994, Crystal City, Virginia
Facilitating
Employment Opportunities for People with Spina Bifida or Cerebral Palsy: The
Importance of Individualization
Melinda L. Mast
THE ISSUE of secondary disabling conditions and how they affect employment for
people with severe physical disabilities is just now coming to the attention of
people who work in the employment field. One reason is that employment for many
people with severe physical disabilities has been occurring only since the late
1980s.
In 1987 United Cerebral Palsy Associations (UCPA) was awarded a federal grant to demonstrate that people with severe physical disabilities could be successfully employed. This was one of the first projects to work specifically with people with severe physical disabilities. The project ended in 1990 and successfully assisted 115 people to find employment (Callahan, 1991). This project now serves as a national model.
As more and more people with severe physical disabilities are employed, the need to identify secondary disabling conditions and to prevent them or reduce their effect becomes critical. Sometimes within weeks of being employed, people participating in the project began to identify problems related to specific secondary conditions of cerebral palsy and spina bifida. With regard specifically to spina bifida and cerebral palsy, secondary conditions that are of concern include medical problems such as urinary tract infections, incontinence and the odor caused by incontinence, and bronchial and lung infections.
Others
include lowered self-esteem, joint stiffness, spasticity and pain from
spasticity, com-munication difficulties, pressure sores, the perception by
others of mental retardation due to appearance and communication difficulties,
and complications arising from the aging process.
THREE CASES
Bob
Bob (not his real name), who is 45 years old, has cerebral palsy. He has been
employed as a microfilm retrieval clerk for more than six years. When he began
working, he used a cane for assistance with walking, he had some spasticity in
both arms and hands, and had difficulty with his speech. He was able to live
semi-independently and to drive a car. During the past several years Bob's age
seems to have affected his cerebral palsy. Current research indicates the
overall aging process begins earlier in people with certain physical
disabilities. This secondary condition of cerebral palsy has caused Bob to
experience extreme stiffness in his legs so that he can walk only with the
assistance of a walker.
Most of the time he uses a scooter because of the stiffness that is beginning to occur in his arms. He is stooped more than ever before, and his eyes do not focus properly, even with corrective glasses. He is no longer able to drive or live independently. He has a live-in attendant. It was becoming more and more difficult for Bob to perform some of the essential duties of his job-reaching for the computerized reels of microfilm, sitting for long periods of time, and focusing on screens for long periods. When Bob began working with a local agency to find a job, the person assisting him, the agency's job developer, used an individualized approach.
By getting
to know Bob through the Vocational Profile, the job developer came to understand
that changes might occur as Bob got older and that those changes would affect
his employment. There was no way to predict when the changes would occur, nor
was there a way to prevent them. In defining an ideal employment situation, Bob,
his family, and the job developer agreed that it was essential to find an
employer who would make the needed supports available as Bob's physical status
began to change as part of the secondary disabling condition of aging. The
microfilming company fit that description.
As his work became increasingly difficult, Bob and his local agency negotiated
with the employer to make some adjustments in his work environment and in his
duties. He no longer had to retrieve the reels themselves; a coworker took over
that job. At the same time, Bob took over more of the cataloging (filing) duties
from that same coworker. So a trade was made. The screen on Bob's screen reader
was magnified, which made it easier for him to see the documents he needed to
read. In addition, a new chair contoured to Bob's changing back was provided.
These were minor changes and were quite easy to negotiate. They seemed to work
for another year.
However,
in early 1993 Bob decided that he could no longer do most of his job without
extreme pain and that he simply could not tolerate a full day of work. His
feelings of dependence over the home care and transportation issues added to his
feelings of frustration. He quit his job in March of that year.
The Americans with Disabilities Act (ADA) and the reauthorization of the Rehabilitation Act have made it possible for Bob to receive retraining. As a hobby, Bob provided typesetting services from his home for several of his friends. His local vocational rehabilitation agency has provided him with more sophisticated training and assistance that included typesetting software and computer adaptations. Bob now works when he is physically able, in his own home. A friend has moved into his home and provides assistance and transportation in exchange for rent.
Bob is
very happy about this sharing arrangement. Bob's requests to voca-tional
rehabilitation are his right under the ADA and the new reauthorization
regulations. No longer are these requests considered frills, but individual
rights for people with disabilities.
Anna
Anna works as a receptionist for a private law firm. She is a friendly
28-year-old woman who has spina bifida. Using an individualized approach to
employment, the job developer took into consideration one of Anna's biggest
concerns surrounding work-incontinence. Anna believed that she might not be able
to work. Frequent urinary tract infections meant that catheterization was not a
possible solution. Anna was unsure of being well enough for long enough periods
of time to be a good employee. Not only were the secondary conditions of her
spina bifida an issue on a medical level, but incontinence and the odor
associated with it had become a social issue.
This was a situation where the secondary conditions of spina bifida were known and needed to be addressed as she moved toward actual employment. If an individualized approach had not been used, the job developer might not have been aware of Anna's concerns or sensitive to her needs. Anna's parents and her physician played an integral part in assisting Anna define an ideal job-one that would not compound her disability. During the profile meeting, Anna indicated that she wanted to work in an office part time. As for an employment site, the accessibility of the bathroom would be as important as the job itself. The job developer began by looking at the bathrooms and then, if they were accessible, determining if the job itself met Anna's criteria.
When a job was located, Anna and the employment specialist who provided support and training, negotiated with the front office secretary to cover the phones for ten minutes at the beginning of every hour. Anna would use the bathroom at this time. In trade, she worked for one half-hour extra each day. This arrangement was discussed with and approved by the office manager.
The
arrangements have proven to be satisfactory. Anna has fewer urinary tract
infections and is secure in the belief that her incontinence and odor are not a
problem on the job.
Joan
Joan works as a receptionist and is the first person anyone encounters as they
enter the office building. She has severe cerebral palsy with spasticity and
speech difficulties. She uses a power wheelchair. When Joan was 30, she moved
from a nursing home into her own home with a roommate, also a person with a
disability, and a live-in support person. She loved the independence her own
home gave her and, for the first time, felt like taking a job. She had never
even considered being employed and had frequently been told that her disability
was far too severe for her to do meaningful work.
Working with a local agency that provided supported employment services and that used an individualized approach, Joan found just the job she wanted. In getting to know Joan by compiling the Vocational Profile, the job developer became aware that joint stiffness, pain from spasticity, chronic bronchial problems, and frequent pressure sores were conditions secondary to Joan's cerebral palsy. The job developer used this information in preparing Joan for work and in negotiating the terms of her employment. Part of the job was to use the telephone and the computer, both of which Joan would operate with a hand stick.
Reasonable accommodations as identified by ADA prompted the employer to adapt the telephone and computer so that Joan could more easily use them. A telephone headset, an expanded keyboard, and a system that linked them adapted the job in such a way as to prevent further complications from the secondary conditions. In addition, Joan's work area was moved to an inside corridor where her desk is protected from the outside to minimize the possibility of bronchial problems. She was given a seating and positioning evaluation to readjust her seat cushion. Joan, her employer, her physician, and her employment specialist and trainer all agree that she is her own worst enemy.
Her strong
desire to succeed at her job causes her to neglect her health. She has had to
learn to respond to her symptoms before more serious problems were allowed to
develop. She also has had to learn to trust her employers and to believe them
when they reassure her that people who get sick do not lose their jobs.
THE EMERGENCE OF INDIVIDUALIZATION
Implementation of best practices in employment has indicated that the more attention professionals and other service providers pay to individual needs, the more likely it is that people with disabilities will be successful in employment. Indeed, the individualized approach used in UCPA's demonstration project seems to be the most effective method for assisting a person with a severe physical disability to find employment.
Moreover, the project found that the more severe a person's disability, the greater the role individualization played in locating a good job match. Of the 115 people assisted by the project, all indicated their primary disability to be severe physical disability; 93% had either spina bifida or cerebral palsy (Callahan, 1991). Many of the participants had cognitive and multiple disabilities as well. They were employed in such jobs as data entry operator, janitor, telephone operator, microfilm operator, mail clerk, receptionist, secretary, messenger, cashier, bank clerk, printing apprentice, file clerk, dietary aid, and food preparer (Callahan, 1991).
An individualized approach begins with getting to know the person seeking employment, including identifying and considering all possible secondary conditions relating to the person's disability. In other words, professionals who provide services to people with disabilities need to begin to work with each person as he or she is in order to discover the whole person and the extent of the disability. It is most important to find jobs that truly match a person's wishes, dreams, and abilities, and that benefit his or her overall quality of life. For instance, if a man wants to work in a mailroom but can get to work only when his parents are available, finding a job for him in a mail house late in the afternoon is far better than placing him in a large company whose hours are nine to five. The latter might seem to be a better job, but the hours do not make sense for him.
Successful individualization depends on information. The more information available on the person to be employed, the better the job match. The Vocational Profile provides a strategy for gathering information (Nisbet & Callahan, 1987). The information to be gathered is based on already existing information, the life experiences, skills, and abilities of the person to be employed. This creates a real picture of the person, not the sort of picture based on traditional evaluations, which use comparison (Callahan, 1991). It is a process that is completed by the person to be employed and the person assigned to help him or her find employment, known as the job developer.
The Vocational Profile strategy is an outgrowth of the ecological strategy suggested by Lou Brown and his associates (Brown et al., 1986; Sweet et al., 1982), combined with a person-centered planning approach as supported by Beth Mount's Personal Futures Planning (Mount, 1987). The Profile tries to balance the need for accurate and meaningful information with the most natural and individualized methods of seeking employment (Callahan, 1993; Mcloughlin, Garner, & Callahan, 1987). It results in a completed life painting, one that includes all aspects of a person's life. It looks at a prospective employee's existing skills, experiences, family and home life, neighbors, friends, job preferences, transportation, and other support needs. These are the same consid-erations anyone would weigh when looking for employment.
The Vocational Profile is completed cooperatively by the job developer and the person to be employed, his or her family, friends, and anyone else the prospective employee wants to include. Through this process existing health and disability-related concerns, including secondary disabling conditions, can be addressed. The resulting information becomes part of the overall picture of employment.
With this information in hand, the job developer is able to anticipate possible aggravation of any secondary conditions and needs for individualized support the employee might have. For example, a good job match for a woman who has frequent abrasions from leg braces would be a job that requires little movement because it would minimize the risk of complicating a secondary condition.
By 1990, service providers and other professionals working with people with disabilities in the area of employment began to see a greater willingness on the part of employers to get involved in individualized approaches to employment. Employers were experiencing first hand the commitment to the job and the contribution to the organization being made by the employee with a disability. They were willing to return that commitment by getting involved and in facilitating training and support needs. Traditionally, it was believed that employers were unwilling and unable to meet the needs of people with severe disabilities.
Professionals in the human services field (job developers, job coaches, employment specialists, and trainers) were seen as the only people capable of facilitating that process and interacting with employers. As some job developers have stated, they often felt they had to "sell the farm" in order to develop suitable employment situations for people with disabilities. They quickly found, though, that they could not deliver on all promises, that employers were not really committed to the employee, and that the employees were not being integrated into the workplace.
When job developers use a more natural approach of involving the employer in the entire employment process, they are essentially asking the employer to make a commitment to the employee with a disability, the same commitment the employer would make to any employee-to provide training and support during the tenure of employment. This commitment then makes it possible to negotiate any supports or adaptations necessary to prevent or minimize the effects of secondary disabling conditions in the person to be employed.
Not only
are employers willing to be more involved, the changing economic trends are
necessitating their involvement. There seem to be many people looking for few
jobs. Employers are hiring people who are willing to work and who can contribute
to the organization. By balancing these needs with the needs of the employee
with a disability, it is possible for the job developer to communicate the whole
picture of the prospective employee, a picture that meshes with the needs of the
employer.
CONCLUSION
The
obstacles to employment confronting people with physical and multiple
disabilities are still great. Concern over secondary disabling conditions that
may be aggravated by employment further complicates the existing problems. This
only reinforces the need for human service professionals to be keenly aware of
the life experiences, choices, abilities, and situations of each person and to
use that information to drive the search for employment.
REFERENCES
Brown, L., Albright, K., Solner, A., Shiraga, B., Rogan, P., York, J., & VanDeventer, P. (1986). The Madison strategy for evaluating the vocational milieu of a worker with severe intellectual disabilities. Madison, Wis.: University of Wisconsin and Madison Metropolitan School District.
Callahan, M. (1991). Common sense and quality: Meaningful employment outcomes for persons with severe physical disabilities. Journal of Vocational Rehabilitation, 1(2), 21-28.
Callahan, M. (1991). Final report for United Cerebral Palsy Associations Three Year Demonstration Project on Supported Employment. Washington, D.C.: United Cerebral Palsy Associations.
Callahan, M. (1993). The seven phase sequence for balancing naturalness and individual employee needs. Gautier, Miss.: Marc Gold & Associates.
Mcloughlin, C. S., et al. (1987). Getting employed, staying employed: Job development and training for persons with severe handicaps. Baltimore, Md.: Paul H. Brookes.
Mount,
Beth. (1987). Planning futures together. Atlanta, Ga.: Georgia Advocacy Office.
Nisbet, J., & Callahan, M. (1987). The vocational strategy. Gautier, Miss.:
Marc Gold & Associates.
Sweet, M.,
Shiraga, B., Ford, A., Nisbet, J., Graff, S., & Loomis, R. (1982).
Vocational training: Are ecological strategies applicable for severely
multihandicapped students? Madison, Wis.: University of Wisconsin and Madison
Metropolitan School District.
Melinda L. Mast is Director of the United Cerebral Palsy Associations Employment
Staff Project: Research and Demonstration on Supported Employment Initiatives
for People with Severe Physical Disabilities, Springfield, Illinois.