Aging with disabilities, such as multiple sclerosis, spinal cord injury, muscular dystrophy, and postpolio syndrome, can lead to barriers to participation, including employment barriers. Many individuals develop strategies for overcoming these barriers that may become less successful as they experience more secondary conditions concomitant with the aging process. Rehabilitation professionals can help to overcome barriers to workplace participation and should work with clients to enhance employment outcomes.
Individuals with disability, such as multiple sclerosis (MS), spinal cord injury (SCI), muscular dystrophy (MD), and late effects of polio (LEP), often develop a range of skills and strategies that when combined with environmental and social accommodations compensate for barriers they encounter to participation. As their function changes with age, however, these strategies and accommodations may not serve as effectively, especially at work.
Today, many individuals with disability live into later adulthood because of advances in medical knowledge and practice. For example, in 1940 the average life expectancy after SCI was just 18 months. In 2005, the same individual with SCI is expected to live approximately 85% of a normal life span (approximately 68 years). By way of comparison, in the past 50 years the survival rate for individuals with SCI has increased 2000%, as opposed to only 30% for people in general.
Although individuals with disabilities are living longer, they also are confronting higher levels of secondary conditions and barriers to participation than people in general. Increases in pain, weakness, fatigue, and other secondary symptoms may influence their work performance and their ability to remain in the workforce. For example, cardiovascular data from individuals with SCI indicate that they may “age faster” than those without SCI. Moreover, older individuals with disabilities report higher rates of unemployment than older individuals who do not have a disability. It is not surprising that given the high levels of unemployment, one of the significant risks associated with disability is poverty.
In addition to the financial challenges that come with shifts in employment status, maintaining employment has been repeatedly linked with improved quality of life. Issues around employment can be paramount as people age with increasing functional limitations.
Little is known about the impact of aging on employment for individuals with MS, SCI, MD, or LEP. Approximately 90% of individuals diagnosed with MS are employed before their diagnosis. As few as 30% remain in the workplace 5 years postdiagnosis, however, despite the fact that many (40%) who are unemployed want to return to work. There have been few studies about vocational rehabilitation and individuals with MS. In a study in the United Kingdom, Sweetland and colleagues concluded that individuals with MS need assistance with managing the interaction between the impairments caused by MS, the physical environment, and the demands imposed by the work. Studies conducted in the United States have found that interventions to preserve employment are more successful than those returning people to work, and that issues impacting employment are both related to the disease and to the work environment. A few recent studies have examined issues around aging with MS, concluding that individuals with MS leave work earlier than the national average because of disability. There are very little data, however, specific to the impact of aging and secondary conditions related to MS on employment or on the potential role of vocational rehabilitation interventions to prolong worklife.
About 60% of individuals with SCI were employed before their injury, yet only 20% to 40% are employed 10 years and more postinjury. Those individuals with SCI who do return to work require assistive technology, job placement, support services, and counseling. As with individuals with MS, however, little is known about the impact of secondary conditions on continued employment as they age. Krause found that it is extremely unlikely for those with SCI injured after the age 55 to return to work unless they are returning to their preinjury job. Those who do return to employment are not likely to remain until the traditional retirement age. Krause and others also found that employment rates after age 50 continued to decline for those returning to work, although the reasons for this decline in employment rate and early retirement are not clearly determined beyond the relationship between employment and personal factors, such as increased education and functional status, and decreased medical complications.
As with individuals with MS, those with LEP experience early educational and professional options at the same level as their nondisabled siblings. A total of 80% of the more than 1,000,000 survivors of poliomyelitis living in the United States experience symptoms consistent with LEP after age 40. These symptoms, which include increased weakness, fatigue, and pain, are frequently severe enough to result in significant employment loss. Most people with LEP have significant fatigue and 40% report that fatigue interferes with their ability to work. To date there is no literature that investigates the role of vocational rehabilitation interventions addressing these symptoms and extending participation in employment for those with LEP.
No recent literature is available on the impact of aging with MD, secondary conditions related to MD, and participation in the workforce. Fowler and colleagues found that employment decreased as individuals aged. Of the 157 people with MD that they interviewed, 40% were currently employed and 50% had previously been employed. Gagnon and colleagues found that more than 45% of those surveyed with MD had experienced disruption in employment because of disability-related factors.
Barriers to employment
There are both individual and programmatic facilitators and barriers to employment for people with disabilities. The interaction among these facilitators and barriers form a personal economy of energy and resources. As barriers increase, the resources within the personal economy decrease, and as this happens individuals must make difficult decisions about resource allocations: whether to continue allocating increasingly scarce personal resources to employment at the expense of applying those resources to family and leisure. In several studies subjects described that as their secondary conditions worsened, they found that when they arrived home from work, they often did not have enough energy to participate in family or leisure activities, and felt caught between valuing work, income, and health care benefits and missing out on important non–work-related quality of life. It is not just the progression of secondary conditions but rather the interaction of that progression with social and environmental barriers that takes a toll on the available economy.
Individual disability factors contributing as barriers to employment include secondary conditions, such as pain, fatigue, changes in mobility, depression, changes in cognition, changes in vision, and bowel and bladder control. Individual factors can also include characteristics of the individual that may or may not be related to disability, such as educational level, level of social support, and assertiveness.
Societal and environment variables also can serve as barriers to employment for people with disabilities. Societal variables, such as the lack of universal health care coverage and the lack of portable health care coverage that follows an individual from job to job, are significant barriers. For example, people with disabilities may find themselves in the “disability trap” where their only viable option for health care coverage is associated with disability income subsidy. Similarly, they may have limited options, even with federal work incentive programs, to work while on subsidy. Environmental variables may include lack of accessible physical environments, such as restrooms and curb cuts, or inaccessible information technology, such as lack of usable computer interfaces.
To assist people with disabilities to retain or gain employment, informal or formal accommodations are often useful. Under many circumstances an employer is required by federal and state laws to provide accommodations for disability if asked.
Key legislation
Because societal barriers have been so profoundly disabling, people with disabilities advocated unsuccessfully for disability status to be included as a protected class in the civil rights legislation of 1964 to 1966. In the 1974 amendments to the Rehabilitation Act of 1973, civil rights for people with disabilities were protected with respect to employment, education, and access if the entity (eg, school or employer) received federal dollars. It was not until the passage of the Americans with Disabilities Act (ADA) in 1990 that true disability civil rights legislation was enacted.
The ADA provides true civil rights protection under most circumstances. The ADA prohibits discrimination in employment against qualified individuals with disabilities who are able to perform the essential functions of the job with or without accommodation. It also prohibits discrimination against individuals with disabilities in the areas of transportation, public accommodations, state and local governments, and telecommunications. Title I of the ADA, which took effect on July 26, 1992, prohibits private employers, state and local governments, employment agencies, and labor unions from discriminating against qualified individuals with disabilities in job application procedures, hiring, firing, advancement, compensation, job training, and other terms, conditions and privileges of employment. Because of recent federal and US Supreme Court decisions limiting the scope of ADA by finding that individuals may not sue state governments for discrimination in federal courts (although they may still file a complaint and the federal government could chose to sue a state government) and that “treatable” disabilities are not covered (eg, if the disability related to low vision is eliminated by eyeglasses, then the disability is not covered), Congress passed what was known as the “ADA Restoration Act,” or the ADA Amendments Act of 2008. In the Act, Congress clarified its intent that the ADA covers a broad range of people and conditions and contexts.
ADA does not extend protection to every individual with a disability. Protection is limited to those individuals with disabilities that limit major life activities. Under ADA, a qualifying disability is defined as physical or mental impairment that substantially limits one or more of the major life activities of such an individual, record of such an impairment, and being regarded as having such an impairment. Reasonable accommodation may include but is not limited to making existing facilities used by employees readily accessible to and usable by persons with disabilities; job restructuring, modifying work schedules, reassignment to a vacant position; and acquiring or modifying equipment or devices, adjusting or modifying examinations, training materials, or policies, and providing qualified readers or sign language interpreters.
An employer must make an accommodation to the known disability of a qualified applicant or employee if it does not impose an undue hardship on the business. Undue hardship is defined as significant difficulty or expense in light of such factors as the employer’s size, financial resources, and the nature and structure of its operation. Employers are not required to lower quality or production standards to make an accommodation, or to provide personal use items, such as eyeglasses or hearing aids.
Even though it is common practice, employers may not legally ask job applicants about the existence, nature, or severity of a disability but may ask about the applicant’s ability to perform specific job functions. This can place the applicant in a difficult position because some disabilities, such as SCI, may be obvious to the employer, whereas for some people with MS or LEP, disability may be hidden. Strategies with respect to disclosure are discussed later in this article. A job offer may be contingent on the results of a medical examination only if the examination is required for all entering employees in similar jobs. Medical examinations of employees must be job-related and consistent with the employer’s business needs. Similarly, qualifying tests must be clearly related to the demands of the job, and if accommodations are necessary for the employee to have a fair take on the test, they must be provided.
The US Equal Employment Opportunity Commission has issued regulations to enforce the provisions of Title I of the ADA for employers with more than 15 employees. Many states have laws that complement or exceed ADA requirements.
Key legislation
Because societal barriers have been so profoundly disabling, people with disabilities advocated unsuccessfully for disability status to be included as a protected class in the civil rights legislation of 1964 to 1966. In the 1974 amendments to the Rehabilitation Act of 1973, civil rights for people with disabilities were protected with respect to employment, education, and access if the entity (eg, school or employer) received federal dollars. It was not until the passage of the Americans with Disabilities Act (ADA) in 1990 that true disability civil rights legislation was enacted.
The ADA provides true civil rights protection under most circumstances. The ADA prohibits discrimination in employment against qualified individuals with disabilities who are able to perform the essential functions of the job with or without accommodation. It also prohibits discrimination against individuals with disabilities in the areas of transportation, public accommodations, state and local governments, and telecommunications. Title I of the ADA, which took effect on July 26, 1992, prohibits private employers, state and local governments, employment agencies, and labor unions from discriminating against qualified individuals with disabilities in job application procedures, hiring, firing, advancement, compensation, job training, and other terms, conditions and privileges of employment. Because of recent federal and US Supreme Court decisions limiting the scope of ADA by finding that individuals may not sue state governments for discrimination in federal courts (although they may still file a complaint and the federal government could chose to sue a state government) and that “treatable” disabilities are not covered (eg, if the disability related to low vision is eliminated by eyeglasses, then the disability is not covered), Congress passed what was known as the “ADA Restoration Act,” or the ADA Amendments Act of 2008. In the Act, Congress clarified its intent that the ADA covers a broad range of people and conditions and contexts.
ADA does not extend protection to every individual with a disability. Protection is limited to those individuals with disabilities that limit major life activities. Under ADA, a qualifying disability is defined as physical or mental impairment that substantially limits one or more of the major life activities of such an individual, record of such an impairment, and being regarded as having such an impairment. Reasonable accommodation may include but is not limited to making existing facilities used by employees readily accessible to and usable by persons with disabilities; job restructuring, modifying work schedules, reassignment to a vacant position; and acquiring or modifying equipment or devices, adjusting or modifying examinations, training materials, or policies, and providing qualified readers or sign language interpreters.
An employer must make an accommodation to the known disability of a qualified applicant or employee if it does not impose an undue hardship on the business. Undue hardship is defined as significant difficulty or expense in light of such factors as the employer’s size, financial resources, and the nature and structure of its operation. Employers are not required to lower quality or production standards to make an accommodation, or to provide personal use items, such as eyeglasses or hearing aids.
Even though it is common practice, employers may not legally ask job applicants about the existence, nature, or severity of a disability but may ask about the applicant’s ability to perform specific job functions. This can place the applicant in a difficult position because some disabilities, such as SCI, may be obvious to the employer, whereas for some people with MS or LEP, disability may be hidden. Strategies with respect to disclosure are discussed later in this article. A job offer may be contingent on the results of a medical examination only if the examination is required for all entering employees in similar jobs. Medical examinations of employees must be job-related and consistent with the employer’s business needs. Similarly, qualifying tests must be clearly related to the demands of the job, and if accommodations are necessary for the employee to have a fair take on the test, they must be provided.
The US Equal Employment Opportunity Commission has issued regulations to enforce the provisions of Title I of the ADA for employers with more than 15 employees. Many states have laws that complement or exceed ADA requirements.
The vocational rehabilitation process
Many people with SCI, MD, MS, and LEP are currently employed, or have a history of employment, and may even have a job to which they may return. The vocational rehabilitation process may be applied by individuals seeking to preserve their employment or find employment. It should not be viewed as a lockstep process but rather as a flexible set of interventions and tools that can be tailored to the needs of an individual. For individuals newly injured with SCI, this process may begin on the day of admission on the inpatient rehabilitation unit, if such services are provided. For people who have lived with SCI, MD, LEP, or MS, the vocational rehabilitation process can be initiated in the outpatient clinic or by the individual themselves. Whenever the process begins, it includes the following steps discussed next.
Referral
Health care providers are often in an ideal position to make referrals for vocational rehabilitation services. Note that many individuals also self-refer. Not only should individuals who are not working be considered for referral, but so should individuals who are working if there is an indication that they are dissatisfied with their employment or are at risk for losing their job. The vocational rehabilitation process should be driven by the person with the disability and supported by the rehabilitation counselor and others.
Assessment
The assessment begins with a review of records and an interview with the client, significant others, family members, and other key informants. The assessment process includes a review of functional limitations and strengths, and an investigation of current and potential barriers to employment. A careful review of educational, vocational, and avocational history yields a list of transferable skills and an employment history (eg, a resume). An appraisal of the career interests may be useful either through the counseling process or with career assessment instruments. Generally, people are more satisfied in employment that is consistent with their career interests, for example preferences for working with data versus people, or in activities requiring creative problem solving versus routine activities. Similarly, it may be useful to understand an individual’s temperament or personality style. This can be evaluated by a review of history, interview with the client and other key informants, observation, or psychologic assessment.
If potential rehabilitation goals include return to school or pursuit of occupations that require certain levels of educational attainment, then it is necessary to evaluate achievement by a review of educational records, interview, and perhaps through achievement testing. An assessment of readiness for education can often be obtained by the client by taking the placement tests at community colleges and vocational training programs.
When possible, the best assessment involves review of actual performance, interview, and real world tryouts. The validity of paper and pencil tests is limited. Another approach to vocational evaluation involves the use of work samples. Work samples are either organized along various tasks common to many jobs or tasks thought to represent a specific job. For example, one might have activities that sample the individual’s ability to manipulate small objects or demonstrate eye-hand coordination. Commercially available vocational evaluation systems using work samples often include norms that purport to allow the evaluator to compare the performance of the person being evaluated with a standard necessary for successful occupational performance. These predictions do not hold up well; however, the vocational evaluation systems may provide a useful way for people with disabilities to try out a variety of occupational activities and for the evaluator to collect observational data about the way the client engages in the task.
Situational Assessment
Situational assessment is the generic term for using real-life situations to assess performance. In vocational rehabilitation, job stations or paid employment may serve this purpose. Job stations may be created by collaborating with employers to have the client try out elements of a job for a period of time. For example, consider a 55-year-old woman with LEP who has worked as a telephone reservations clerk for an airline for 20 years. Because of increasing fatigue and pain, she simply cannot keep up with the demands of the job despite accommodations. She is uncertain what else she could do. She has excellent public interaction skills and good computer skills. A job station is set up for her at the medical center where she performs the work of a patient care coordinator. Here she is able to change positions frequently, take breaks as necessary, and there is less focus on production speed. She is able to use this experience as a job tryout, and can get a recommendation from the supervisor and perhaps an introduction to a potential open position.
Labor Market Analysis
As part of the assessment process, the outlook for employment in various occupations is evaluated. The US Department of Labor and State Departments of Employment Security maintain statistics on trends in occupations including the number of people currently employed part time and full time in each occupational group, and the percent growth or decline predicted during the next 5 years. Clients can identify the number of jobs currently available in an occupational group within their immediate geographic area. They can also find out the wages, tasks, educational preparation, and other characteristics of occupations. This information is readily available on the US Department of Labor and other governmental Web sites.
Counseling
Many clients with disabilities find counseling useful to help them re-evaluate their expectations, enhance their personal adjustment, and understand and react to the perceptions and biases of others around them including family members, potential employers, and coworkers. As part of the counseling process the clients may take stock of the resources they bring to bear on the issues, the barriers they confront, and compensatory strategies to which they have access or can learn.
Selecting a Goal
Through the counseling process, the client evaluates the assessment data and develops a terminal goal and intermediate steps. For example, a 45-year-old woman with relapsing remitting MS who is having increasing difficulty with fatigue and cognition might set as her long-term goal to try and work until she is 55 and then go out on medical retirement. To reach that goal, she may need to develop intermediate steps that could include (1) improving accommodations in her job; (2) putting aside more savings in anticipation of reduced earnings in retirement; (3) engaging in careful estate planning to ensure that she preserves assets for herself and her family if her health deteriorates and she requires assisted living or skilled nursing; and (4) as her fatigue increases, she may need to either negotiate with other family members to pick up household chores, such as cleaning and shopping, or hire outside help.
Educational or Vocational Re-entry
Once the goal setting and planning is completed, the next step in the vocational rehabilitation process is intervening to preserve employment; vocational re-entry if a new job is the goal; or if additional education is the outcome, then educational re-entry. To preserve employment, individuals may be able to self-initiate informal accommodations in the workplace and negotiate necessary changes outside the workplace independently. Often, however, consultation from a rehabilitation counselor or other professional is useful. In vocational re-entry, the client may be able to secure a job independently, but often may require assistance in job development and placement from the rehabilitation counselor. Although discrimination against qualified individuals with disabilities is illegal, discrimination at the point of hiring is difficult to prove and may not be intentional on the part of the employer. Employers may not have experience interacting with people with significant disabilities and may not be able to imagine them working productively. Advocacy and assistance in obtaining employment is often an appropriate role for the rehabilitation counselor.
Supported Employment
Some people with disabilities require ongoing support in the workplace to sustain employment. For some, such as persons with high-level tetraplegia, support may involve assistance in positioning in relation to a task, manipulating materials, and so forth. They may also require personal care assistance in the workplace. Others, such as individuals with MS who have advancing cognitive difficulties, may require ongoing support in the form of job coaching from a coworker or paid assistant.
Job Placement
When the rehabilitation counselor is assisting with the job placement process, he or she begins by searching for jobs that meet elements of the client’s goal. When potential jobs are identified, the rehabilitation counselor conducts a job analysis to determine the actual kinds of work done in that particular job; the cognitive, social, and physical demands of the job; and potential accommodations. Incidentally, this is the same process conducted to assist an individual to preserve employment. Then, in collaboration with the client and the employer, the fit of the job with the client is evaluated:
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Is this job a good match for what the client was seeking in terms of interest, skills, distance from home, social environment, pay, and benefits?
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Can the client do the essential functions of the job with or without accommodation?
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Given the size of the employer and the employer’s resources, are the accommodations reasonable?
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If the client cannot perform the essential functions of the job, is the employer willing to modify the job or create a job the client could do by merging components of other jobs?
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Could the client do the job with additional accommodations not paid for by the employer, such as the support of a job coach?
Job Accommodation
Dowler and colleagues reviewed the requests for information on accommodation made by 1000 people with SCI who called the national Job Accommodation Network. They reported that callers with tetraplegia most frequently reported difficulties with gross and fine motor skills, such as keyboarding, manipulating small parts, holding pens, and sorting. Those with paraplegia reported difficulty with driving, heavy lifting, carrying objects, reaching work areas, and so forth. Job accommodations can include modification in work schedules; modification of tasks; and modification of the environment to make it more accessible (eg, installing electric door openers or a ramp). Some accommodations are as simple as removing a desk drawer or raising the height of a desk with four wood blocks to permit wheelchair access. Other accommodations are high technology and involve designing computer interface software and hardware, or writing scripts to allow a user to control multiple applications using voice recognition. Still other accommodations are practical, such as providing a private changing area and storage for a change of clothing for a male employee with tetraplegia who uses a condom catheter in case of bladder accidents when the condom becomes disconnected during transfers. In many cases, the need for additional accommodations becomes apparent as the employee begins settling into the job.
Accommodations for fatigue include modifying schedules so that the employee can take rest breaks. Teaching the client pacing skills may also be useful and working with the employer to allow the client to maintain control over the pace of activity is a reasonable accommodation. Accommodations for cognitive changes include allowing the employee to begin the work day early before others arrive so he or she can focus on more difficult tasks before the environment becomes more distracting. Also, using common tools, such as email, electronic calendars, office computers, and smart phones, as “cognitive prosthetics” may be useful.
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