Vocational rehabilitation for persons with spinal cord injuries and other severe physical disabilities
Katherine J. Inge
The 1990’s must be the time when the dream becomes a reality that all persons with disabilities, regardless of the nature or severity of their disability, have the opportunity to work in the employment situation of their choice. For this to happen, there must be a renewed commitment to this goal and attention focused on developing innovative approaches for improving and expanding the provision of existing vocational rehabilitation services to individuals with spinal cord injuries and other severe physical disabilities. Unfortunately, the vast majority of people with severe physical disabilities have not yet entered community employment and largely remain unserved (Revell, Wehman, Kregel, West, & Rayfield, 1994). They continue to experience rates of unemployment and underemployment that far exceed those of the general population, even after completing postsecondary educational and training programs (Babbit & Burbick, 1990; Bowe, 1983; Liebert, et al., 1990). Many of these individuals could benefit from assistive technology, but they have not gained access to services and remain unserved (Mann, 1991). There are literally hundreds of thousands of people who could live and work independently with the proper application of assistive technology and supports but remain in state run institutions or nursing homes (Turner, Barrett, Cutshall, Lacy, Keingham, & Webster, 1995).
According to a Louis Harris Poll of persons with disabilities, low levels of employment exist among Americans with disabilities despite the passage of the Americans with Disabilities Act in 1990. As of 1994, 68 percent (greater than two-thirds) of people with disabilities between the ages of 16 to 64 were not employed; however, 79 percent of these unemployed individuals indicated that they wanted to work, with an even greater number (84 percent) in the 16-44 age group stating that they wished to work (Louis Harris and Associates, Inc., and The National Organization on Disability, 1995).
The cost of maintaining unemployed adults with disabilities is high. Approximately 42 percent are recipients of public support funds such as Supplemental Security Income (SSI) or Social Security Disability Insurance (SSDI) (Bowe, 1983). The cumulative effect of supporting large numbers of people over their lifetime is indeed substantial (Hill, Seyfarth, Banks, Wehman, & Orelove, 1987). According to the President’s Committee on Employment of the Handicapped (1987), the federal government spent $62 dollars in 1985 on subsidies, medical care, and programs for people with disabilities, more than 93 percent of whom were not working.
People with disabilities have cited that the number one barrier for not working is imposed by their disabilities. Other important barriers to employment identified by the Louis Harris Poll include the following:
* 42 percent stated that employers will not recognize that the person could do a good job;
* 31 percent were concerned about losing benefits or insurance;
* 24 percent cited unavailability of transportation;
* 24 percent expressed a need for a personal assistant; and
* 16 percent indicated a need for assistive technology.
Clearly, these are issues that should be addressed by employment programs.
Federal Policy Initiatives
Several major public policy initiatives hold promise for reversing this trend. First, supported employment, a vocational rehabilitation (VR) strategy authorized by the Rehabilitation Act Amendments of 1986, allows state VR systems to fund time-limited training and adjustment services in competitive employment for individuals who will need extensive ongoing support services to maintain their employment. This strategy has been refined and used for individuals with severe physical impairments in demonstration projects with great success (Cooper & Mank, 1989; West, Wehman, Kregel, Kreutzer, Sherron, & Sasler, 1991).
Second, PL 100-407, the Technology-Related Assistance for Individuals with Disabilities Act of 1988, provided funding to increase the availability of assistive technology services and devices for persons with physical impairments. Congress reauthorized and amended the Act in March of 1994, PL 103-218 (Technology-Related Assistance for Individuals with Disabilities Act of 1994). Two key components of this legislation include the following:
* Title I specifies that protection and advocacy services must be provided by each state in one of two ways. A state may provide funds to an already existing protection and advocacy organization, or it may request that the U.S. Secretary of Education annually reserve funds to develop a protection and advocacy organization in that state. If a state otherwise was providing protection and advocacy services as of June 30, 1993, it may continue to do so using the same plan of operation.
* Title III allows the Secretary of Education to award one-time grants to states for the establishment of alternative financing mechanisms through which consumers can obtain funds to purchase assistive technology devices and services. Each grant can be. for an amount not to exceed $500,000 and is contingent on the state at least matching the funds.
Third, the Americans with Disabilities Act of 1990, through its broad and progressive mandates, promises to bring persons with severe physical impairments into the American work and community mainstreams. Specifically ADA gives “civil rights protection to individuals with disabilities that are like those provided to individuals on the basis of race, sex, national origin, and religion. It guarantees equal opportunity for individuals with disabilities in employment, public accommodations, transportation, state and local government services, and telecommunications” (U.S. Department of Justice, p.1).
In essence, this legislation has removed many of the external barriers that have interfered with the ability of individuals who have disabilities to express their choices, to exert control over their lives, and to achieve employment. In the area of employment, ADA prevents discrimination of a qualified individual with a disability if he or she is able to perform the essential functions of a job with or without reasonable accommodation; therefore, employment opportunities for persons with spinal cord injuries can now be based upon individual choice and merit rather than on the lack of knowledge or the potential misconceptions of employers. Similarly, access to the community, including public accommodations, commercial facilities, and transportation, can now be determined by the individual with a disability rather than by external factors such as availability, accessibility, or attitudes.
Fourth, the Rehabilitation Act Amendments of 1992, PL 102-569, reflects values aimed at empowering persons with disabilities. The regulations specifically address the need for consumers to have choice and control over their rehabilitation services (Inge & Brooke, 1993). The “choice regulations” included in the amendments state that the individual with a disability must jointly develop his/her Individualized Written Rehabilitation Program (IWRP) with the rehabilitation counselor. The IWRP must be designed to include a statement in the individual’s words describing how he or she was informed o and involved in choice related to employment goals, objectives, services, service providers, and methods used to procure or provide services. For persons with spinal cord injuries and other physical disabilities, the ability to exercise choice in a variety of situations is perhaps one of the most important accomplishments and one of the greatest benefits of ADA and the Rehabilitation Act Amendments of 1992.
PL 102-569 also refers to ADA and the Tech Act of 1988 for definitions of assistive technology, rehabilitation technology, and extended services. The Tech Act addresses the need for technology in the workplace for individuals with severe disabilities. Vocational rehabilitation counselors when assisting an individual with a severe disability must include in the IWRP “a statement of the specific rehabilitation technology services to be provided to assist in the implementation of intermediate rehabilitation objectives and long-term rehabilitation goals for the person.” In addition, key report language states the following: ” . . . the IWRP should provide for regular and periodic assessments to ensure that a match exists between the supports, the technology, and the current and changing needs of the individual who will be using the technology as well as other people involved in the provision of services who require the information.. . ” (Senate Report 102-357, p. 39). Finally, each rehabilitation agency must:
* Describe how a broad range of rehabilitation technology services will be provided at each stage of the rehabilitation process [Sec. 101(a)(5)(C)(I)].
* Describe how a broad range of such rehabilitation technology services will be provided on a statewide basis [Sec. 101(a)(5?(C)(ii)].
* Describe the training that will be provided to vocational rehabilitation counselors, client assistance personnel, and other related services personnel [Sec. 101(a)(5)(C)(iii)].
* Describe the manner in which devices and services will be provided or worksite assessments will be made as part of the assessment for determining eligibility and/or needs of an individual [Sec. 101(a)(31)].
Consumer Involvement in Disability Program Planning
Clearly, consumer involvement in disability program planning, implementation, and evaluation has received considerable attention from consumer and advocacy groups, professionals, and policymakers (Bradley & Bersani, 1990; Gradel, 1991). DeJong, in a major address at the 1993 Annual Meeting of the American Academy of Physical Medicine and Rehabilitation, appropriately called for a “new compact” within medical rehabilitation between clinicians and disability rights advocates:
“I am urging that medical rehabilitation work toward a new alliance with people with disabilities to help forge a new sense of community at all levels of our society–local, regional, state, and national”.
Unfortunately, consumer choice in employment seems to remain more the exception than the rule in practice. Within Virginia, lack of consumer involvement and choices has been identified as a major problem faced by supported employment participants across all disability groups (Brooke, Barcus, & Inge, 1992). Additionally, in a recent program evaluation of supported employment for persons with physical disabilities and traumatic brain injury (Virginia Institute for Developmental Disabilities, 1992), only 41 percent of the respondents indicated that they had exercised choice in types of jobs in which they were eventually placed, and 61 percent indicated that they did not like the jobs into which they had been placed and would like to change. These findings suggest that customer self-determination in employment is lacking for participants from these disability groups.
As previously noted, many individuals with spinal cord injuries or other severe physical disabilities require assistive technology services and devices to enter or re-enter the competitive work force. However, as Gradel (1991) notes, accessibility and personal preferences in assistive technology are limited for many individuals with severe physical impairments. She cites data from more than 15,000 consumers responding to the National Consumer Survey sponsored by the National Association of Developmental Disabilities Councils Qaskulski, Metzler, & Zierman, 1990) indicating that specialized services were needed by up to 40 percent of the sample. In addition, the services that are available continue to segregate and insulate consumers from other members of the community rather than integrate them with community life. Gradel further writes that most human service agencies, including employment programs, have not yet fostered a climate of responsiveness to consumers’ wants, needs, expectations, preferences, and standards.
Turner and his colleagues (1995) addressed this lack of responsiveness to the customer’s needs related to technology acquisition and use. Traditionally, consumers have assumed the “client” role deferring to the authority of professionals. Turner and his colleagues stated the following:
“. . . many professionals view persons with disabilities as their clients whom they need to help. This professional attitude has a tendency to place the professional in the dominant role. The professional becomes the ruler and governor of agency policies, funding streams, and technical information related to assistive technology.”
This very traditional approach to identifying technology has been described as one of the reasons that many consumers obtain technology only to take it home, store it in a closet, and never use the device for completing daily living and work tasks.
Good vocational rehabilitation programs must reject this old way of doing business and place customers at the center of the employment process, thus giving them choices in the labor force. To do so, service agencies need to develop a “customer service culture” that listens to its customers, involves them in service planning and delivery, and effects lifestyle changes that are valuable to them. However, there are many outdated service delivery practices that must change in order for this to happen. The following is a description of one approach to empowering individuals with spinal cord injuries and other severe physical disabilities to take control of the vocational rehabilitation process.
Developing a “Customer Service Culture”
Several demonstration projects at the Rehabilitation Research and Training Center (RRTC) at Virginia Commonwealth University have addressed the issue of developing a customer service culture. The components of these demonstrations have included the following:
* a peer-to-peer mentor program
* customer-directed career planning and
* jobsite enabling through assistive technology, personal supports, and other accommodations.
Each of these components are interdependent; however, they will be discussed individually for clarity of presentation.
Peer-to-Peer Mentor Program: Professionals cannot understand all of the issues that an individual with a spinal cord injury or other physical disability will face when entering the workplace for the first time or re-entering after an injury. The most powerful support can only come from someone who has overcome employment berries and achieved his/her dream. A peer-to-peer mentor program can afford customers access to individuals who have achieved what they wish to achieve. As such, projects at the RRTC have designed and implemented a process in which customers of services are matched to peer mentors of their choice.
The first activity of the peer-to-peer mentor program is a formal self-advocacy institute which occurs over a 2-3 day period. The institute introduces the customers to person-centered planning services designed to support and enhance their employment potential. Mentors and other community consumer advocates comprise the training cadre. A sample agenda is provided in Table 1.
Agenda for Project Access Peer-to-Peer Mentor Institute
8:30 to 9:15 Welcome
Introductions and Expectations of the Training
What is a mentor?
9:15 to 10:00 Levels of Self-Advocacy
Understanding and Using Self-Advocacy
10:00 to 10:15 Break
10:15 to 11:45 Know Your Employment Rights
Questions and Answers
11:45 to 1:00 Lunch and Networking
1:00 to 2:15 Know Your Rights Under Social Security
Navigating the Systems
Using the Systems to your Advantage
2:15 to 2:30 Break
2:30 to 3:30 Making It Happen: A Panel Discussion
Deciding to Act
How to Deal with Stonewalling Situations
3:30 to 4:30 Role Play and Case Study Examples
9:00 to 9:30 Review Activity of Day 1
9:30 to 10:15 The Rehabilitation Act and You
Being Eligible for Services
Customer Choice and Services
Client Assistance Program
10:15 to 10:30 Break
10:30 to 11:00 Supported Employment Services
What are they?
How do I use them?
What can they do for me?
11:00 to 12:00 Role Play and Case Study Examples
12:00 to 1:00 Lunch
1:00 to 2:30 Exploring the Pathway to Effective Mentoring:
What is your vision of a mentor?
What are your expectations of a mentor
How can a mentor best meet your needs?
2:30 to 2:45 Break
2:45 to 3:30 How do we get started?
What are our first steps?
Develop an action plan.
3:30 to 4:00 Closing Activity
Consumer Institute Guiding Principles
1. Teaching customers with spinal cord injuries and other severe
physical disabilities to understand their role as
customers who can use choice as a tool of empowerment:
a. assisting customers to understand their role as a customer
with a right to make choices in everyday life;
b. encouraging customers to exercise options in choosing
their rehabilitation services; and
c. obtaining desired employment.
2. Training customers with spinal cord injuries and other severe
physical disabilities to be effective self-advocates by:
a. understanding and using effective self-advocacy techniques;
b. having the knowledge to become good decision makers;
c. learning to be assertive and persistent when
faced with stonewalling situations;
d. becoming skilled at the art of negotiating;
e. using role-play exercise to assist customers in practicing
methods to obtain vocational rehabilitation and
f. using case history assignments to teach problem solving
3. Training customers with spinal cord injuries and other severe
physical disabilities to be mentors who are
equipped to train other customers by:
a. inviting customers who are experienced in using self-advocacy
to initial institutes to serve as examples of good
b. use customers as trainers who can serve as role models;
c. have follow-up institutes to teach individuals to become
d. have unstructured evening activities designed to encourage
networking and bonding between customers that will facilitate
their working together as mentors.
4. Empowering customers with spinal cord injuries and other
severe physical disabilities by:
a. teaching the value of employment to increase self-esteem,
be productive, and make friends in the workplace;
b. training customers to know what agencies can assist them
in their advocacy efforts;
c. training customers on ways to obtain what services they need
from the establishment.
Most individuals with spinal cord injuries are able to advocate effectively for needed services and supports. Other customers, however, may need assistance to identify and obtain the needed supports. To address this issue, the individual with a spinal cord injury or other physical disability should work with his or her employment specialist and family members to make certain that person centered plans identify all needed services and supports, not just those related to an individual’s employment situation. Major areas for possible support are summarized in Table 6.
Employment Related Support Needs of Persons with Spinal Cord
Injuries or Other Physical Disabilities
Transportation–Assistance may be needed in accessing
specialized, door-to-door transportation services, acquiring
vehicular modifications to allow the individual to operate a
motor vehicle, obtaining driver’s education, arranging
car pools, or other transportation alternatives.
Housing–Assistance may be needed in obtaining affordable and
physically accessible housing options, obtaining financial
assistance to pay for housing costs, home modifications, and
Financial Assistance–Many individuals with disabilities may be
receiving SSI or SSDI benefits at the time they enter
employment. Assistance may be needed in accessing and using
available work incentives that allow the individual
to maximize their personal income while participating in these
Independent Living Services–Services that can be provided through
a Center for Independent Living (CIL) include
peer counseling to assist the individual in obtaining all needed
services and supports, training in a variety of independent
living skills, and information and referral services.
Medical Assistance–Assistance may be needed in enabling
individuals to access available medical assistance, obtain
supplemental health insurance, or other services.
Assistive Technology–Assistance may be needed to allow
the individual to become aware of available assistive
technology devices, evaluate the relative utility of
various devices, and then selecting and securing devices
which may aid the individual in both their employment and
independent living settings.
Personal Assistance Service–Assistance may be needed in
identifying the need for a personal assistant; determining
eligibility for a particular personal assistant program; hiring,
supervising, and evaluating the personal assistant;
and funding personal assistant services.
Finally, Peter has been assisted to maintain employment with ongoing support from the employment specialist. Not every customer will need this ongoing assistance, but it has been beneficial to Peter. For instance, the employment specialist has worked with him and the employer to negotiate time off from work due to ongoing healthcare needs when Peter has pressure sores. In addition, he receives ongoing training in new work tasks as well as in new worksite modifications, which continues to make the difference for this customer with a spinal cord injury.
Preparation of this manuscript was supported by the U.S. Department of Education, National Institute of Disability and Rehabilitation Research. The opinions expressed here do not necessarily reflect those of the supporting entity, and no official endorsement should be inferred.
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Katherine J. Inge, Ph.D., O.T.R. Paul Wehman, Ph.D. John Kregel, Ed.D. Pam Sherron Targett, M.Ed.
Dr. Inge is Director of Project Access and Director of Tech Link. Dr. Wehman is Director of the VCU Rehabilitation Research and Training Center on Supported Employment, Dr. Kregel is Director of Research, and Ms. Targett is Director of Employment Services at the Rehabilitation Research and Training Center on Supported Employment, Virginia Commonwealth University, Richmond, VA.
COPYRIGHT 1996 U.S. Rehabilitation Services Administration
COPYRIGHT 2004 Gale Group