Parents of students on the autism spectrum and their neurotypical peers begin to think about college as they progress through high school. According to the Department of Labor, students with disabilities who earn a bachelor’s degree are employed at about the same rate as their non-disabled peers (DoL, 2018). Armed with this knowledge, parents then focus upon getting into the “right” college as the end goal. However, this focus misses the mark. College in and of itself should NOT be the end goal. Rather, the goal of transition should be living independently and finding gainful employment. Many higher functioning individuals on the autism spectrum are intellectually capable of completing college level coursework, but struggle to find employment. Four-year liberal arts degrees teach students to think broadly, but do not explicitly teach job and independent living skills. Students on the autism spectrum need concrete training that connects the dots between what is learned in the classroom and what is expected in the world of work.
Ernst VanBergeijk, PhD, MSW, Professor and Director
The statistics on employment for youth and adults on the autism spectrum are grim. People on the autism spectrum have employment rates lower than all other disability groups, make less money per hour than other disability groups, and worked in fewer fields (Roux, 2013). They earned less money than all other disability groups, worked 36% less hours per week than other disability groups, and the proportion of individuals who worked full-time is 1/3 of all that of other disability groups (Standifer, 2012). Shauck (2012) found 34.7% of transition-aged youth on the autism spectrum attended college and 55.1% had paid employment with 6 years after high school. His team also found that over 50% did not participate in employment 2 years after high school. Consequently, transition planning with an eye past college to employment is paramount.
When should parents start thinking about transition planning? The answer is immediately. Many feel that because their child is young, those thoughts and decisions can be put off until high school. Federal legislation helps to re-enforce this notion. Under the Individuals with Disabilities Education Act (IDEA) a student with a disability must set a goal for their transition at age 14 years. An explicit transition plan needs to be in place by age 16 that outlines the activities which would support the transition plan goals. Typically, those goals are either entering the world of work and independent living, or post-secondary education.
When a child is born, many families begin saving for college and planning for their child’s transition from high school to college. Some families do this through a 529 College Savings Plan. Families with a young child on the autism spectrum are no different than the families with a neurotypical child. However, receiving the autism diagnosis can have a devasting effect upon the parents. It leads often to anxiety, uncertainty, and a loss of hopes and dreams. Some families give up those dreams and stop thinking about the transition after high school. They are focused upon daily survival. Thanks to early detection and intervention with empirical based techniques, the outcomes for children on the autism spectrum have improved and some students are able to attend post-secondary education.
With the passage of The Achieving a Better Life Experience (ABLE) Act of 2014, parents of children with any kind of a disability can begin saving for not only post-secondary education, but a wide variety of support services. The ABLE Act Savings Plans were modeled after the 529 College Savings Plans. It can be used to supplement other benefits and pay for expenses such as education, housing, transportation, employment training, supportive assistive technologies, personal support services, or health and basic living expenses. Savings accounts through The ABLE Act function like College or Health Savings Accounts – the earnings grow tax-deferred and are federal income tax-free when used for qualified disability expenses. In order to be eligible, an individual must be entitled to benefits based on blindness or disability under Title II (SSDI) or Title XVI (SSI) or certify that they are blind, disabled, or have a condition listed on the “List of Compassionate Allowances” maintained by the SSA. The applicable blindness or disability must have occurred before the individual turned 26-years old. Accounts created through the ABLE Act have an annual contribution limit of $14,000 and an account limit of $400,000. The accounts are subject to a $30 annual account maintenance fee. Balances below $100,000 do not impact SSI benefits, balances over $100,000 will be counted as a resource of beneficiary and could result in suspension of SSI. Money in these accounts does not impact Medicaid. Money in the account may be invested in eight portfolio options, varying in risk and fee. Qualified disability expenses are any expenses for the benefit of the account owner in maintaining or improving his or her health, independence, or quality of life. If the funds in the account are not spent on qualified disability expenses, taxes and a potential 10% federal penalty tax may be owed on earnings associated with the withdrawal. The savings are called a variety of different names and are administered by a number of investment firms which vary by state (Froehlich, 2017).
Transition planning for the long haul involves being able to visualize where one envisions a child on the autism spectrum will wind up and work backward from there. Will the child go to college or some other post-secondary program? Or will she or he go to work? To which level of independent living will this child aspire? Schools do an excellent job of reaching the Individualized Education Plan (IEP) goals that deal with their core strengths which are the teaching of academic skills. The combination of a lack of training and structural challenges make it more difficult to be successful in attaining IEP goals in the realm of the acquisition of independent living and social skills. Parents may need to take the lead in writing and teaching the skills related to those goals. For example, there are three predictors of a successful transition to our college-based program for students with disabilities. Those habits are: (1) getting themselves up and ready for school or work every day; (2) administering their own medication; and (3) washing their own laundry on a weekly basis. Although, these goals are not directly related to school work, they are directly related to living independently over the long haul. Other independent living skills that help with living in the long-term include: (1) financial literacy; (2) travel training; and (3) pre-employment and employment skills.
Knowing what one can expect from the school district in terms can help parents in the transition planning process. According to the Individuals with Disabilities Education Improvement Act (IDEIA, 2004), transition services are defined as: a coordinated set of activities for a child with a disability that is designed to be within a results-oriented process, that is focused on improving the academic and functional achievement of the child with a disability to facilitate the child’s movement from school to post-school activities. This includes: postsecondary education, vocational education, integrated employment (including supported employment), continuing and adult education, adult services, independent living, or community participation; is based on the individual child’s needs, taking into account the child’s strengths, preferences, and interests; and includes: instruction, related services, community experiences, the development of employment and other post-school adult living objectives, and, when appropriate, acquisition of daily living skills and functional vocational evaluation.
Where school districts and parents disagree, is where and when those transition services end as well as who is financially responsible for those transition services. Prior to the re-authorization of IDEA, the U.S. Department of Education held a commentary period where this issue was highlighted:
Comment: A few commenters recommended that the regulations clarify that schools can use funds provided under Part B of the Act to support children in transitional programs on college campuses and in community-based settings.
Discussion: We do not believe that the clarification requested by the commenters is necessary to add to the regulations because, as with all special education and related services, it is up to each child’s IEP Team to determine the special education and related services that are needed to meet each child’s unique needs in order for the child to receive FAPE. Therefore, if a child’s IEP Team determines that a child’s needs can best be met through participation in transitional programs on college campuses or in community-based settings, and includes such services on the child’s IEP, funds provided under Part B of the Act may be used for this purpose. (34 CFR Parts 300 and 301 Assistance to States for the Education of Children with Disabilities and Preschool Grants for Children with Disabilities; Final Rule, page 46,668).
Under IDEIA, the local educational agency or school district is responsible for the education of a child with a disability in the least restrictive environment until age 21 years if the student has not graduated from high school, met his or her IEP goals, and had an exit interview. Under this law, the notion of transition-aged youth ended at age 21.
Any parent can tell you that a transition-aged youth ends at age 21. Whether or young person has a disability or not, young people still need support and help transitioning into adulthood. With the passage of the Workforce Innovation Opportunity Act (WIOA), the age of transition-aged youth is extended to age 24. This Act has been hailed as “Most significant piece of legislation for people with disabilities since the passage of the Americans with Disabilities Act of 1990 because it focuses on transition-aged youth and mandates that 15% of State Vocational Rehabilitative Services budgets be allocated to this population. The goal is to obtain competitive integrated employment for transition-aged youth. It also moves away from sheltered workshop placements and sub-minimum wage jobs. No longer is a mere closing of a case after 90 days used as an outcome to demonstrate the success of the organization. The emphasis is now on longevity in a career and the generation of a living wage. WIOA specifically calls for “… transition services for students with disabilities that facilitate the transition from school to post-secondary life, such as an employment outcome in competitive integrated employment, or pre-employment services…” (H.R. 803-233). Previously, parents of a transition-aged youth could not rely upon state offices of vocational rehabilitation to fund pre-employment training. WIOA NOW funds pre-employment transition services which can include:
- Interview skills
- Dressing appropriately for the work setting
- Travel training
- Independent living skills
- Resume writing
- Appropriate peer and supervisor communication
- Financial literacy
These skills are critical for students on the spectrum to gain and keep employment. The hope is that this new legislation will result in more collaboration between schools, office of vocational rehabilitation (VR), and institutions of higher education. Miligore et al. (2012) found that the odds were greater for employment if job placement services were provided by VR. However, only 48% ASD youth received such services. Post-secondary college services are the best predictor of better earning, according to Miligore’s team, BUT only 10% of the VR dataset received these services. Wehman et al (2013) and Moore and Schelling (2015) in their studies found that post-secondary vocational training and college-based transition programs significantly increases the chances that a student on the autism spectrum will be employed. Roux, A.M., Rast, J.E. & Shattuck, P.T. (2018) research indicated that transition-aged youth who received vocational rehabilitative services while in high school were more likely to be employed. The implication for parents is to encourage the participation of representatives for the state office of vocational rehabilitative services at IEP meetings starting at age 14.
If a student on the autism spectrum is not going to pursue a college degree, then they should seek a college-based or community-based transition program, if appropriate, as a part of their transition to adulthood. Finding these programs can be difficult. Four resources available to parents who are thinking about transition planning and looking for programs are:
- Think College! https://thinkcollege.net/
- Heath Center National Youth Transition Center: https://www.heath.gwu.edu/
- Comprehensive Transition & Post-secondary (CTP) programs: https://studentaid.ed.gov/sa/eligibility/intellectual-disabilities
- Lesley University Threshold Program e-Book – Comprehensive Guide to Transition Programs – https://www.lesley.edu/six-qualities
When looking for such a program, ask what are the outcomes for their graduates? Do they have data tracking how their alumni are doing? What do graduates of these programs do once they complete the program? Some programs have a naturally occurring community of people with disabilities who wind up riding permanently in the community near by the transition program. What do these programs do to continue to support these graduates? Howlin, Goode, Hutton, and Rutter’s (2004) findings indicated that few young adults on the autism spectrum lived alone, were employed, and had friends. Most relied upon family for living arrangements and continuing support. After interviewing numerous families of students with disabilities and soliciting feedback regarding what would help their students transition into adulthood, Lesley University Threshold Program fund raised and built an alumni center dedicated to the on-going support of students with disabilities who graduated from their transition program. The goals of this center are continued employment, social engagement in the community, and the provision of a variety of support services. Transition planning for the long-haul includes trying to find a community in which transition-aged youth on the autism spectrum can engage, find gainful employment, and have a good quality of life.
Ernst VanBergeijk, PhD, MSW is a professor at Lesley University in Cambridge, MA, and is the Director of the Threshold Program which is a post-secondary transition program for students with a variety of disabilities. For more information, visit www.lesley.edu/threshold.
References
20 Code of Federal Regulations (CFR) Parts, 676, 677, and 678. Department of Labor. Employment and Training Administration.
34 CFR Parts 300 and 301 Assistance to States for the Education of Children With Disabilities and Preschool Grants for Children With Disabilities; Final Rule
34 Code of Federal Regulations (CFR) Parts 361 and 463. Department of Education. Workforce Innovation and Opportunity, Joint Rule for Unified and Combined State Plans, Performance Accountability, the One-Stop System Joint Provisions; Final Rule
34 CFR Parts 361, 363, and 397 RIN 1820-AB70 [Docket ID ED-2015-OSERS-OOO1]
State Vocational Rehabilitation Services program; State Supported Employment Services program; Limitations on Use of Subminimum Wage https://s3.amazonaws.com/public-inspection.federalregister.gov/2015-05538.pdf
Froehlich, K. (2017). ABLE Act Fact Sheet in Massachusetts. (Unpublished document).
Individuals with Disabilities Education Act (1997). U.S.C. 20. Part A & Part B. §1400, §1401, §1412, §1414, and §1415.
Individuals with Disabilities Education Improvement Act (IDEIA) of 2004.
Migliore, A., Timmons, J., Butterworth, J., & Lugas, J. (2012). Predictors of employment and postsecondary education of youth with autism. Rehabilitation Counseling Bulletin, 55(3), 176-184. doi: 10.1177/0034355212438943
Moore, E.J. and Schelling, A (2015). Postsecondary inclusion for individuals with intellectual disabilities and its effects on employment. Journal of Intellectual Disabilities. DOI: 1744629514564448
National Skills Coalition. Federal Policy. The Workforce Innovation and Opportunity Act. Retrieved from: http://www.nationalskillscoalition.org/federal-policy/workforce-investment-act. September 28, 2016.
Roux, A.M., Rast, J.E. & Shattuck, P.T. (2018). State-Level Variation in Vocational Rehabilitation Service Use and Related Outcomes Among Transition-Age Youth on the Autism Spectrum. Journal of Autism Developmental Disorders, pp.1-13. https://doi.org/10.1007/s10803-018-3793-5
Roux, A.M., Shattuck, P.T., Cooper, B.P., Anderson, K.A., and Narendorf, S.C. (2013). Postsecondary Employment Experiences Among Young Adults With an Autism Spectrum Disorder Journal of the American Academy of Child & Adolescent Psychiatry ,52 (9): 931-939.
Shattuck, P.T., Narendorf, S.C., Cooper, B., Sterzing, P.R., Wagner, M. and Lounds Taylor, J. (2012). Postsecondary Education and Employment Among Youth with an Autism Spectrum Disorder. Pediatrics, 129:1042–1049. doi:10.1542/peds.2011-2864
Standifer, S. (2012). Fact Sheet on Autism Employment. Autism Works. The National Conference on Autism Employment. Retrieved from http://autismhandbook.org/images/5/5d/AutismFactSheet2011.pdf. October 15, 2017.
The Workforce Innovation and Opportunity Act (WIOA) (H.R. 803).
U.S. Department of Labor Bureau of Labor Statistics (2018a). Economic New Release. https://www.bls.gov
U.S. Department of Labor Bureau of Labor Statistics (2018c). Persons with a Disability: Labor Force Characteristics – 2017.
Wehman P.H. et al. (2013). Competitive employment for youth with Autism Spectrum Disorders: Early results from a randomized clinical trial. Journal of Autism and Developmental Disorders, DOI 10.1007/s10803-013-1892-
