The employment statistics for people with disabilities are dismal and particularly low for those with cerebral palsy. As practitioners working with young people who have moderate to severe cognitive and physical challenges, including those with cerebral palsy, the authors assert that there are best practices that make a difference. There are states and programs showing successful outcomes. Those who create partnerships among education, businesses, and rehabilitation agencies are seeing direct positive results in employment outcomes for people with disabilities, as well as cultural and perceptional changes in businesses and people who have hiring capability. This article reviews the relevant literature; conclusions are drawn and recommendations made to improve the employment outcomes for youth with cerebral palsy in their transition to adult life.
“It’s Monday … everyone works on Monday.” So says the familiar line of one of our favorite movies “Dave.” Do you look forward to work on Monday? Do you look forward to the job itself, the people, and the pay? Do you think about your job over the weekend with dread, frustration, or excitement?
For many of us, work defines us, or at least a big part of us. At a party or picnic people ask, “What do you do?” meaning “Where do you work?” and “Do you like it?” The other underlying message is “How do you contribute?”
But what if you don’t work? Not because you are retired, or a student, or staying home raising children, but because you have never had the opportunity to work. The employment statistics for people with disabilities are dismal and particularly low for those with cerebral palsy (CP). Michelsen and colleagues reported that only 29% of 819 participants with CP aged 21 to 35 years identified from Denmark’s unique Danish Cerebral Palsy Registry were competitively employed, in comparison with 82% of controls, and 5% of those who were studying. Participants with CP generally had a lower annual income than controls. Participants with hemiplegia had the highest employment rate (46%), followed by those with diplegia (26%), and among those with quadriplegia, only 12% were competitively employed. Among the participants with CP who were able to walk, the severity of motor impairment was found to be only a minor influence. The odds ratio for not being competitively employed was 22.5 for those individuals with a developmental quotient (DQ) of 50 to 85 in comparison with those with a DQ over 85. Completing education had training and employment implications. Fifty-one percent of participants obtained secondary school education, whereas 45% of participants with CP, compared with 5% of controls, never passed an examination in lower secondary school. Type and severity of CP differed substantially with educational attainment, but even among individuals with hemiplegia, only 50% had education beyond lower secondary school compared with 77% of controls. Participants with education beyond lower secondary school often had mild CP. Rather simple clinical characteristics in early childhood seem to predict future employment. Motor disability, which is the defining characteristic of CP and the focus of much of the rehabilitation effort, seems to be of relatively minor influence across all types of CP. In the Danish study, significant predictors of not being competitively employed were severity of cognitive impairment, type of cerebral palsy, presence of epilepsy, and severe motor impairment.
A literature review of employment outcomes in CP yields limited studies. Most available data are from studies with small numbers and varied work outcomes that show an overall low employment statistics. In the United States the National Health Interview Survey, conducted by the Census Bureau/National Center for Health Statistics, is a very large longitudinal study, however its statistics are reported in relation to the general population of people with disabilities and not broken down by persons with specific impairments such as CP. A small study of male workers with CP (8) focused on those using augmentative and alternative communication (AAC) with college level education. Although interesting predictors were identified, the lack of data available on young adults with significant cognitive challenges is still highlighted.
An estimated 764,000 children and adults in the United States exhibit one or more symptoms of cerebral palsy. The range of motor function impairment varies widely from mild isolated impairment of motor abilities to severe disabilities in motor, speech, cognition and epilepsy. As persons with cerebral palsy age, they may develop secondary conditions (see also the article by Murphy and colleagues in this issue). Daily living skills may become more difficult over time. Secondary conditions and decreasing overall function may significantly affect the amount of technical and personal support a person with cerebral palsy needs to be successful in an integrated working environment for the a prolonged period of time. The three areas of functioning that are critical to job seeking and work performance are self-care, physical functioning/mobility and communication. Job seeking is severely affected because of intense personal needs and perceptions of employers and human resources personnel. A person with intense personal care needs may use some of his earnings to pay for someone to help him get ready for work, assist him during the job, meet after-work needs and even assist with navigating the complicated maze of government work incentives. Low tech and high tech solutions can often make it possible for someone to be productively employed and overcome deficits in these three areas.
The national advocacy organization United Cerebral Palsy (UCP), in their Annual Case for Inclusion 2008, developed a vision for persons with CP with intellectual and developmental disabilities containing 4 commitments:
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People with disabilities will live in and participate in their communities
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People with disabilities will have satisfying lives and valued social roles
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People with disabilities will have sufficient access to needed support and control over that support so that the assistance they receive contributes to lifestyles they desire
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People will be safe and healthy in the environments in which they live
Even though these commitments have been articulated in a number of legislative, administrative, and judicial statements describing national policy, they do not specifically mention employment. One can speculate that the goal of competitive employment is implied in the first 3 commitments. It would seem critical for any prominent national policy organization for persons with CP to articulate explicit strategies for increasing employment opportunities and lead the way to impact employment outcomes positively.
In his review of the health and well-being of adults with CP, Liptak observed that, in our culture, well-being has traditionally been defined to include completing formal education, entering the work force, living independently, having romantic relationships, participating in recreation and/or leisure, driving a car, and enjoying social group encounters. Literature and experience indicate that many young adults with CP are not achieving these common accomplishments.
This article reviews the relevant literature; conclusions are drawn and recommendations made to improve the employment outcomes for youth with CP in their transition to adult life. It is widely recognized that youth with disabilities have articulated that their top priority is employment. What are some of the reasons why they are not being successful in that endeavor?
Barriers to employment of persons with cerebral palsy
When most job seekers are making decisions on which job offer to accept, they consider factors such as quality of match for their life, their skill set, and their knowledge. For youth and adults with disabilities, these decisions are much more dynamic. They may need to consider additional factors such as the availability of specialized or public transportation, access to assistive technology (AT), effects on their disability benefits, and overall attitudes and perceptions of people toward those with disabilities. Attitudinal and cultural barriers continue to exacerbate environmental constraints such as inaccessibility and discrimination continues to define the disability experience. For those with significant physical challenges such as CP, these considerations are more critical. Individuals with severe CP may not be able to perform simple work tasks without accommodations or even a personal care assistant. Additional challenges include access to appropriate training and skill acquisition leading to adequate preparation for work. Acquisition of appropriate behavior and social skills are additional factors. Young people with CP may be less socially active (and sometimes less socially appropriate) than their typical peers. As they get older, they may lack the social competence to seek and maintain personal friendships and to seek needed services. Coupled with the other factors, this creates barriers to successful employment. Individuals without disability, in contrast, become more socially active after school age. Wadsworth and Harper noted that for adults with and without disability, the lack of ability to function socially is a very important factor associated with failure to obtain employment and difficulty in adapting.
Expectation level is another key factor in employment outcomes of youth with CP. Are parents, teachers, family members, and the young people themselves expecting a competitive job when they graduate from high school? How often does a family member say to a young child with a disability, “What are you going to be when you grow up?” Does the high school guidance counselor ask a teen with CP, “What are you going to do when you graduate? How will you prepare for the job that you want?” Instead, educators are often forced to concentrate on high stakes testing, required classes for graduation, physical accommodations, and development of educational goals that do not prepare the young person for a successful transition to adult life and competitive employment. Work-study programs too often concentrate on traditional jobs in food service, which are often not suitable for youth with CP. High expectations from families, schools, and society that young adults with disabilities will enter the competitive workforce would drive government policy, create appropriate training programs, and result in more outcomes of young adults with CP moving seamlessly from high school to a job that matches their interests, preparation, and skill level.
Stevenson and colleagues found that teachers, care assistants, or others involved with the daily activities of young people with CP rated the prospects for employment for most of them as poor or rather poor. These young people still in school ranked the importance of getting a job a top priority. The mothers of 27 young people (36.5%) considered their children unfit for employment. Just over half of the others indicated that help was needed in forming a realistic plan for the future of their child, but most of them did not know who would help in forming such a plan.
In a study by Murphy and colleagues, involving 125 adults with CP in 2000, 21% were involved in competitive employment. Based on their outcomes, the investigators provided advice for adolescents with CP entering high school:
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Set your own goals
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Do not accept unnecessary school restrictions because of your disability
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Seek out successful adult role models with a similar disability
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Recognize that feelings of identity crisis are common in all adolescents
Another barrier to setting high expectations for employment of youth with CP is that society often regards disability due to CP as a medical issue. When this occurs, the focus may become the cure or treatment of the symptoms of the disability instead of the preparation and training of the young person to develop competitive and marketable skills. When the individual with CP is a “patient,” it is difficult to change the paradigm to the individual as a “worker.” Cultural perceptions and systemic changes need to take place before employment outcomes for youth with CP improve.
Another study warranting attention is that of McNaughton and colleagues of a small population of 8 males with CP, aged between 30 and 57 years, with education ranging from completion of some college credits to completion of a doctoral degree, who used AAC and were employed full time. Through participation in a focus group conducted on the Internet, this small group provided a rich array of recommendations that have application across the age spectrum to youth with disabilities. Some of the benefits of employment included accomplishing personal goals, increasing self-esteem, putting their minds and education to use, making a positive contribution, and achieving financial benefits and positive experiences at work. Also of significance were the negative impacts of employment: physical demands, time demands, and societal prejudice. Their list of personal characteristics, as well as accommodations and supports for successful employment, are applicable to youth with CP and cognitive issues. Factors identified as key to preparation for successful employment included appropriate education, career exploration, and vocational experiences. Community networks, government policies, and computer technology were identified as important supports for obtaining employment. Personal characteristics such as a strong commitment to employment, work ethic, determination, persistence, and time management skills were key factors. Technology, supportive coworkers, personal care assistance, and family support were described as important supports for maintaining employment. These study subjects provided some very insightful recommendations to educators:
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Be aware of the students’ abilities and assist them to reach their full potential
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Prepare them with productive skills
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Expand students’ knowledge of job options
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Have high expectations
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Design adequate training in job search skills
Employment statistics for education and employment of people with disabilities
Almost all of the research shows that the employment rate for persons with disabilities is low. A variety of different reports using diverse measures all have similar outcomes. From The State of Disability in America: According to the US Census Bureau’s Current Population Survey, the 2005 employment rate for working-aged Americans with a work disability was 22%, whereas the employment rate for working-aged Americans without a disability was 76%. The Census Bureau’s American Community Survey found that 38% of working-aged Americans with disabilities and 78% of working-aged Americans without disabilities were employed in 2005. The Census Bureau’s Survey of Income and Program Participation found that 45% of working-aged Americans with severe disabilities were employed in 2002, compared with 88% of working-aged Americans without disabilities. Men with disabilities worked one-third as many weeks during 2002 as men without disabilities. Women with disabilities worked about one-fourth as many weeks as women without disabilities. The data offer only a recent snapshot at the end of a long slow decline in the employment rate of adults with disabilities. Government statistics and academic studies consistently show that employment rates for men and women with disabilities have declined steadily since the recession of 1991 to 1992.
Studies on employment of people with disabilities, although not specific to those with CP, are inclusive of them, and directly correlate with the data associated with income and poverty. 2 In 2005, the median annual household income of working-aged Americans without disabilities was $61,500. The median annual household income of working-aged Americans with disabilities was $35,000, a deficit of more than $26,000. Adult workers with disabilities were almost 3 times as likely to live in poverty as people without disabilities. Individuals with disabilities are more likely to live in poverty and to be dependent on government support. They are less likely to have positive educational opportunities and outcomes, to be employed, or to own a home. In 2005, more than 37 million Americans lived in poverty, about 40% of whom had a disability. Poor families are twice as likely to have a child with a disability and 50% more likely to have a child with a severe disability. Adults with disabilities were more than twice as likely to have less education than a high school degree than were adults without disabilities. Twenty-two percent of students with disabilities failed to graduate high school compared with 9% of students without disabilities.
Employment statistics for education and employment of people with disabilities
Almost all of the research shows that the employment rate for persons with disabilities is low. A variety of different reports using diverse measures all have similar outcomes. From The State of Disability in America: According to the US Census Bureau’s Current Population Survey, the 2005 employment rate for working-aged Americans with a work disability was 22%, whereas the employment rate for working-aged Americans without a disability was 76%. The Census Bureau’s American Community Survey found that 38% of working-aged Americans with disabilities and 78% of working-aged Americans without disabilities were employed in 2005. The Census Bureau’s Survey of Income and Program Participation found that 45% of working-aged Americans with severe disabilities were employed in 2002, compared with 88% of working-aged Americans without disabilities. Men with disabilities worked one-third as many weeks during 2002 as men without disabilities. Women with disabilities worked about one-fourth as many weeks as women without disabilities. The data offer only a recent snapshot at the end of a long slow decline in the employment rate of adults with disabilities. Government statistics and academic studies consistently show that employment rates for men and women with disabilities have declined steadily since the recession of 1991 to 1992.
Studies on employment of people with disabilities, although not specific to those with CP, are inclusive of them, and directly correlate with the data associated with income and poverty. 2 In 2005, the median annual household income of working-aged Americans without disabilities was $61,500. The median annual household income of working-aged Americans with disabilities was $35,000, a deficit of more than $26,000. Adult workers with disabilities were almost 3 times as likely to live in poverty as people without disabilities. Individuals with disabilities are more likely to live in poverty and to be dependent on government support. They are less likely to have positive educational opportunities and outcomes, to be employed, or to own a home. In 2005, more than 37 million Americans lived in poverty, about 40% of whom had a disability. Poor families are twice as likely to have a child with a disability and 50% more likely to have a child with a severe disability. Adults with disabilities were more than twice as likely to have less education than a high school degree than were adults without disabilities. Twenty-two percent of students with disabilities failed to graduate high school compared with 9% of students without disabilities.
Related posts:
New Clinical and Research Trends in Lower Extremity Management for Ambulatory Children with Cerebral Palsy
The Adult with Cerebral Palsy: A Provider-Consumer Perspective
Bone Density in Cerebral Palsy
Clinical Applications of Outcome Tools in Ambulatory Children with Cerebral Palsy
Understanding Function and Other Outcomes in Cerebral Palsy
Establishing Access to Technology: An Evaluation and Intervention Model to Increase the Participation of Children with Cerebral Palsy
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