Linking schools with systems of care that serve adults with chronic illnesses/ disabilities, including vocational rehabilitation (VR) agencies, strengthens the transition process. Knowing the laws that support adults with chronic illnesses, such as The School-to-Work Opportunities Act of 1994 in the United States that provide workplace mentoring and skill certificates for youth with SHCN, can improve the outcome for the young person in the workplace and, ultimately their independence. The Workforce Improvement Act of 1998 links education, employment, and training services to a network of resources in local areas called One-Stop Career Centers (20). Similarly, transition planning mandated under IDEA 2004 stipulates that vocation/ rehabilitation counselors must participate in transition planning if needed before the student exits the school system. Parents and students can request participation as early as age 14 through One-Stop Career Centers (21) or the schools. In the United Kingdom, a similar transition plan is required at age 14 under the Statement of Special Educational Needs implemented by the local educational authority (22). This helps to provide a seamless transition from school to adult service provision. Vocational agencies can provide or arrange for a host of training, educational, medical, and other services individualized to the needs of the person. VR services are intended to help individuals acquire and maintain gainful employment. A VR counselor works with young adults to assess their disability and help him or her develop an individualized plan for employment. This plan will identify an employment goal and the means for achieving it, often including some form of post-secondary education or training. Although VR counselors can provide direct services to the young adult, they more often refer the individual to appropriate community-based agencies for self-advocacy training, development of employment-readiness skills, adaptive driving evaluation and instruction, and job coaching.
Success in the job market and the world of work are critical to successful long-term employment for youths with rheumatic disease. Previous work experience is a prerequisite for many jobs. Unfortunately, most young people with SHCN enter the workforce later than their nondisabled peers. Work activity of a nationally representative sample of nondisabled U.S. high school students who were interviewed between 1997 and 2003 revealed that 41% of high school freshman and 85% of high school seniors had regular jobs either during the school year or during summer months (23). Keeping young people with rheumatic disease on the same developmental milestone trajectory for employment as those without disabilities is essential to their long term independence and well being. The implications of limited early job experience on work-force readiness, long-term employment, economic status, and social functioning in adulthood are profound. In 2004, employment rates for the 14 million U.S. adults with a disability (7.9% of adults aged 18-64 years) were substantially lower than for the nondisabled population (19% vs. 77%). The correlate to this is a poverty rate for adults who have a disability that is substantially higher than that of the non-disabled population (28% vs. 9.2%) (24).
Limited provision of careers counseling in U.K. pediatric rheumatology services has been reported (25) despite evidence that young people themselves want such support (1,26,27). A lack of awareness of such aspects by health care professionals may also be at play (28). A national survey of occupational therapists (OTs) has reported that although OTs felt it was important and appropriate to address the vocational issues of adolescents with a chronic illness, they reported limited perceived knowledge, confidence, and significant unmet training needs (29).
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