Employment and Related Services for Adults with Autism Spectrum Disorders



Fred R. Volkmar, Brian Reichow and James C. McPartland (eds.)Adolescents and Adults with Autism Spectrum Disorders201410.1007/978-1-4939-0506-5_6
© Springer Science+Business Media New York 2014


6. Employment and Related Services for Adults with Autism Spectrum Disorders



Peter F. Gerhardt , Frank Cicero  and Erik Mayville 


(1)
The McCarton School, New York, NY, USA

(2)
Eden II Programs, Staten Island, NY, USA

(3)
Institute for Educational Progress, Milford, CT, USA

 



 

Peter F. Gerhardt (Corresponding author)



 

Frank Cicero



 

Erik Mayville



Abstract

The past decade has seen a general consensus regarding an increase in the prevalence of autism and related disorders (ASD) and, subsequently, steadily growing numbers of adolescent and young adults on the autism spectrum. With this increase has come an increased demand for appropriate services for adults with ASD in the post-school years. Unfortunately the employment, day, community, and residential needs of these individuals continue to far exceed the available resources leaving a generation of individuals with autism and their families in a programmatic, financial, and personal limbo (e.g., Intellectual and Developmental Disabilities 50:441–451, 2012; American Journal on Intellectual and Developmental Disabilities 117:478–496, 2012).



Introduction


The past decade has seen a general consensus regarding an increase in the prevalence of autism and related disorders (ASD) and, subsequently, steadily growing numbers of adolescent and young adults on the autism spectrum. With this increase has come an increased demand for appropriate services for adults with ASD in the post-school years. Unfortunately the employment, day, community, and residential needs of these individuals continue to far exceed the available resources leaving a generation of individuals with autism and their families in a programmatic, financial, and personal limbo (e.g., Parish, Thomas, Rose, Kilany, & Shattuck, 2012; Perkins & Berkman, 2012).

The resulting poor outcomes for adults with ASD, while not unexpected, are also not easily addressed. Among the contributing factors are poorly implemented transition services intended to guide individuals from school to adult life; a general lack of societal understanding as to the potential for adults with ASD to be employed, active, and contributing members of their; a near total absence of coordination between the educational, behavioral, mental health, vocational rehabilitation, and the adult intellectual/developmental disabilities systems; an absence of qualified staff to work with older learners; and the shift from an entitlement services (i.e., IDEA) to nonentitlement services made available as a function of available funds.

Note that none of these challenges focus on the individual challenges of living with autism. Rather, the potential of individuals with ASD to become employed and engaged adults seems limited more by the failure of the systems charged with supporting them than by the challenges associated with their being on the spectrum. Not surprisingly, the economic cost of these systemic inadequacies is rather far reaching. As Ganz (2007) notes “Autism is a very expensive disorder costing our society upwards of $35 billion in direct (both medical and nonmedical) and indirect costs to care for all individuals diagnosed each year over their lifetimes” (p. 343). Absent a concerted effort on behalf of all stakeholders (i.e., parents, professionals, employers, society at large) to correct these inadequacies, the costs can only be expected to grow in the coming years.

Despite recognition of the complex and lifelong needs of adolescents and adults with autism, the development of appropriate and effective services continues to lag far behind those currently available for persons with less severe disabilities. This disparity between the potential for an integrated and productive life and the lack to services to achieve this potential represents an ongoing challenge to parents, professionals, and adults with autism.


Employment and Related Services


Vocational settings for individuals with developmental disabilities, including individuals with a diagnosis of ASD, are diverse; ranging from segregated day programs to competitive employment without supports. Unfortunately, there is no specific government program or agency that is designed to exclusively meet the needs of individuals with ASD. Adolescents transitioning into the adult vocational world need to choose from a variety of public and private programs designed for individuals with a range of developmental disabilities. The decision on which program to choose is made based on the needs of the individual, his or her transitioning and vocational goals, the nature of his or her disability, the economic resources available, and eligibility requirements amongst the various options (McDonough & Revell, 2010). Currently, possible placements include day habilitation settings, sheltered workshops, supported employment programs, and competitive employment without support.

Many individuals with developmental disabilities are placed in vocational and employment settings through programs that are funded through state run Vocational Rehabilitation agencies (Wehman, Inge, Revell, & Brooke, 2007). Vocational Rehabilitation programs often provide an array of services and supports including assessment of eligibility, vocational counseling, guidance and referral services, vocational on the job training, and supported employment. As part of their services, Vocational Rehabilitation agencies will develop an Individualized Plan of Employment (IPE) for each eligible individual. IPEs outline the support services that are needed in order for the individual to achieve his or her personalized goal (McDonough & Revell, 2010). Research suggests that traditional Vocational Rehabilitation programs may not appropriately meet the needs of individuals with ASD. Out of 382,221 individuals who received services through vocational rehabilitation programs whose cases were closed in 2005, 4.3 % of individuals with ASD had a case closed to their disability being determined to be too severe to benefit from services as compared to only 2.0 % of individuals with cognitive impairment and 0.4 % of individuals with specific learning disability (Lawler, Brusilovskiy, Salzer, & Mandell, 2009). Despite this finding, Vocational Rehabilitation programs are showing an increase in the number of cases they are receiving with individuals with a primary diagnosis of ASD. It has been found that cases involving individuals with ASD cost more in supports than cases with individuals with other developmental disabilities. Employment outcomes are found to be mixed. Out of all disabilities, individuals with ASD had the third highest rate of successful employment post Vocational Rehabilitation services (only individuals with a diagnosis of sensory impairment or learning disability were found to achieve more successful outcomes), however individuals on the spectrum are found to work fewer hours and earn lower wages than nearly all other disability groups (Cimera & Cowan, 2009).

Segregated day settings, such as day habilitation and pre-vocational programs, continue to be the most popular setting for individuals with developmental disabilities. In 2004, state disability agencies reported a 3:1 ratio of individuals in segregated settings as compared to supported employment settings (Wehman et al., 2007). Day habilitation settings are “community-based programs that provide long term personal and social development opportunities within a structured environment for individuals with developmental disabilities who are unable to function independently in social, recreational or employment settings. Services are available on an hourly or daily basis and may include daily living skills instruction, basic education, recreational and social activities, exercises to improve coordination and other forms of developmental support which help participants develop and maintain the functional skills that are required for community involvement, self advocacy, self care and employment” (Day habilitation, n.d.). Although theoretically designed to lead toward less restrictive vocational settings, day habilitation programs are often inconsistent with independence and community inclusion. In fact, in 2001 the Rehabilitation Service Administration (RSA) of the US Department of Education stated that positive employment outcomes will only be considered those that are within integrated settings (Wehman et al., 2007).

Sheltered employment programs/sheltered workshops are another vocational option for individuals with developmental disabilities. Sheltered employment refers to “employment provided under special conditions (e.g. in a special workshop or at home) for handicapped persons who, because of the nature and severity of their disability, are either totally unable to carry out a job under ordinary competitive conditions or are able to do so only for a very short period of time” (Sheltered employment, n.d.). Individuals in sheltered workshops can either be paid or not paid for their work, which often includes a variety of activities including sorting, collating, assembly and disassembly tasks set up in contracts with local businesses. Although not an integrated setting, the RSA allows the use of Vocational Rehabilitation monies to fund sheltered employment programs as long as the service is being provided on a time-limited basis in preparation for integrated employment (Wehman et al., 2007).

Initiated in the United States in the 1980s, based upon the 1986 amendment to the Rehabilitation Act in Title VI Part C, supported employment programs were created to enable individuals with disabilities to obtain paid, community-based employment with the addition of necessary supports directly in the job site (Mawhood & Howlin, 1999). Supported employment programs are in accordance with RSA requirements stating that positive outcomes are those where jobs are in integrated settings; “Integrated setting” being defined as a setting typically found in the community where the individual has interaction with people without disabilities, other than those individuals providing supportive services (Wehman et al., 2007). Within supported employment programs, an employment specialist or job coach provides individualized training to the person with a developmental disability. Providing stability and predictability in an independent work environment is the mission of the supported employment paradigm. True supported employment has three main characteristics: paid employment, an integrated work setting, and ongoing support (Garcia-Villamisar & Hughes, 2007).

Outcomes of supportive employment programs seem to be superior to outcomes of sheltered employment and day habilitation settings. Specifically, research has shown greater financial gain for participants, greater social integration, increased worker satisfaction, and savings related to service cost (Mawhood & Howlin, 1999). Ridgeway and Rapp (1998), as cited in Wehman et al. (2007), indicate key employment interventions for effective supported employment. Specifically identified as important elements of supported employment are workplace accommodations, job coaching, supportive counseling, off-site assistance, on-site assistance, support groups linked to community supports, ongoing assessment of support needs after securing a job and ongoing assessment of the job site environment making accommodations as necessary. Bond (2004) outlined six evidence-based principles for successful supported employment, specifically (1) eligibility for the program is based on individual choice, (2) supportive employment is integrated with other services and treatments, (3) the goal of the program is focused on competitive employment, (4) job searching and placement is rapid, (5) job finding is individualized to participant preference, and (6) supports are ongoing and continuous. Programs adhering to these principles showed greater employment outcomes as compared to programs that did not adhere to best practice supportive employment principles.

Mawhood and Howlin (1999) conducted a study to compare employment outcomes of individuals with ASD within a supported employment program to the outcomes of individuals with ASD within nonspecialist day programs. Thirty participants were included in the study, all with a diagnosis of ASD, IQs of 70 or above, able to travel independently and without comorbid psychiatric conditions. Participants within the supported employment group were assessed for their level of functioning and past employment history. Employment specialists were then responsible for indentifying an appropriate integrated job site and providing guidance to the worker on a full-time basis for the first 2–4 weeks of the program. Employment specialists were also responsible for ensuring that the participant could cope with the social and occupational requirements of the job, educating employers about autism and the focus of supportive employment, and advising coworkers and supervisors on how to deal with problems. The amount of support was faded to weekly visits within the second month and then further faded to occasional visits by the fourth month. Planned meetings continued on a regular basis and the employment specialist was made available at all times in case of an emergency. Results indicated that two-third of participants in the supported employment program obtained competitive jobs as compared to only one-quarter of participants in the control group. Of the supported employment participants who obtained competitive employment, over 80 % of the jobs were in administration or computing. Only one of the jobs in the control group was at this level. Regarding participant satisfaction, high levels of dissatisfaction were reported from control group participants while participants in the supported employment group reported high levels of satisfaction.

In another outcome study, Howlin, Alcock, and Burkin (2005) investigated the efficacy of a supported employment program for individuals with ASD in the UK over an 8-year period. Within the first year of the program, eight individuals were enrolled in paid employment. By the eighth year, paid employment was obtained for 192 cases with 70 % of jobs meeting the UK Department for Work and Pensions job criterion of 16+ h per week, sustained for over 13 weeks. Most individuals surveyed were satisfied with their jobs and the pay they received. Almost all individuals reported that the supported employment program was extremely helpful in allowing them to succeed. One problem was that many individuals reported that they did not make friendships in the job site and only seven individuals reported that they met up with coworkers socially after work hours.

Schaller and Yang (2005) reviewed the case closure data for 815 individuals with autism who received services through Vocational Rehabilitation programs in 2001. 55.2 % of individuals had received services to obtain competitive employment and 44.8 % had received supported employment services. Results indicated that individuals who had received supported employment had significantly greater successful closure rates than individuals who had only received competitive employment services. The authors hypothesize that this difference is attributed to the core feature of supported employment which is to provide on the job supports in order to enhance job retention. Although a portion of individuals with autism were able to obtain competitive jobs, without supports they were less likely to retain those jobs over time. In the opposite direction, it was found that individuals who received supported employment earned significantly less wages and worked significantly less hours than individuals who only received competitive employment services. The authors offered two hypotheses for this finding. First, it could be that the range of jobs available for individuals who require supported employment naturally pay less and require less hours than jobs that would be more appropriate for independent workers. Second, it could be that individuals who qualified for supported employment programs needed to earn less pay per year in order to retain Supplemental Security Income (SSI). It is likely that individuals who were appropriate for independent competitive employment were not eligible for SSI support.

Garcia-Villamisar, Wehman, and Diaz Navarro (2002) tracked the outcomes of 55 individuals with autism who were either receiving sheltered workshop or supported employment services. Results indicated a positive relationship between supported employment and improved quality of life; with quality of life being defined by environmental control, community involvement and perception of personal change. In comparison, the quality of life of individuals receiving sheltered workshop services did not change.

Hillier et al. (2007) studied the outcomes of nine individuals with ASD who received supported employment within community-based settings over a 2-year period. Overall, employment levels increased by 78 %. Seven out of nine individuals who were placed in jobs held their first positions for an average of 12.5 months. On average it took 4.5 months to find correct placements based on participant vocational interests, previous experience, and aptitude for particular jobs.

In addition to successfully promoting job placement and retention, supported employment programs have been found to result in increased job satisfaction among individuals with autism (Hillier et al., 2007), increased knowledge of autism among community employers (Howlin et al., 2005), and improvements in standardized test scores related to nonverbal intelligence as compared to individuals in noncompetitive vocational day programs (Garcia-Villamisar & Hughes, 2007). Despite all the evidence showing the benefits of supported employment programs for individuals with ASD, the majority of adults on the spectrum continue to be unemployed, work only to a limited degree or work only within sheltered settings (Lattimore, Parsons, & Reid, 2008).

There is also an economic benefit to supported employment programs beyond the direct benefit to participants. It has been found that supported employment programs cost less per individual in the long run than sheltered workshops or day habilitation programs. Cimera (2008) investigated the financial costs of four adult service agencies providing both supported and sheltered employment services to individuals with cognitive impairments. Results indicated that the cumulative cost of services per individual were significantly higher for individuals served in supported employment settings ($6,618.76 per employment cycle) as compared to individuals served in sheltered workshop settings ($19,388.04 per employment cycle). These numbers indicate that for every one sheltered employee being served, nearly three individuals can be served in community-based supported employment settings. Looking at the trend in cost over time, Cimera (2008) found that supported employment programs showed an initial increase in cost over the first three fiscal quarters followed by a decreasing trend over future quarters. Sheltered workshops, on the other hand, showed an increasing trend in costs over all fiscal quarters.

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Nov 27, 2016 | Posted by in PSYCHOLOGY | Comments Off on Employment and Related Services for Adults with Autism Spectrum Disorders

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