To:
2008 Joint Committee on Children's Issues
From: Wendy Parent, Ph.D.
Date: December 9, 2008
RE:
Transition Services for Persons with Autism
I come to you today as an expert and national leader in the area of transition and integrated
employment for individuals with significant disabilities including autism. My background is in
special education and rehabilitation counseling with an emphasis on transition from school to
work and supported/customized employment. I have been employed in this field for 25 years
with the last four being in Kansas at the Kansas University Center on Developmental
Disabilities.
Nationally, the number of youth with autism between the ages of 6 and 21 who are receiving
special education services under the Individuals with Disabilities Education Act is close to
194,000 (U.S. Department of Education, 2006). This number continues to increase as indicated
by data that suggest 1 in 150 children in the United States have an autism spectrum disorder
(ASD) (CDC, 2007). It is estimated that 1.5 million Americans and their families are affected by
autism at a cost of $35 billion dollars annually (Rehabilitation Research & Training Center on
Workplace Supports, 2008; Retrieved from http://www.crprcep.org/resources/viewContent.cfm/618).
Currently, many youth and adults with ASD continue to be unemployed or attend sheltered
workshops and day activity programs (National Organization on Disability, 2004). Data from
the Rehabilitation Services Administration reports fewer than 2,000 individuals with ASD
received vocational rehabilitation services in 2005 (Dew & Alan, 2007). Of these individuals,
the number who were considered successfully closed in employment were 1,141 or only 0.6% of
the total number of successful closures by vocational rehabilitation in 2005 (Rehabilitation
Research & Training Center on Workplace Supports, Retrieved from http://www.crprcep.org/resources/viewContent.cfm/618).
In Kansas in 2006, 10% of the individuals receiving day work services were in supported
competitive employment; less than half of the national average reported at 21.5% (Braddock,
2008). We are tied at 47th in statewide rankings of % of people who are in supported
employment versus day programs (Braddock, 2008). In comparisons with other states on use of
Medicaid dollars for meaningful employment, Kansas ranked 46th in 2007, a decline from their
ranking of 44th in 2006 (Baker, Mixner, & Harris, 2008). It is reported that approximately 1,100
individuals with developmental disabilities are working in part or full time competitive
employment while 6,492 individuals with developmental disabilities are currently being served
in day programs in Kansas (SRS Division of Health Care Policy, 2008).
In addition, vocational rehabilitation data from 2006 indicate that while Kansas follows the
national downward trend in supported employment numbers, our state is reported to have
approximately half the number of supported employment closures when compared to the national
average (Institute on Community Inclusion, Retrieved 3/24/08 from http://www.statedata.info).
While specific data for individuals with a label of autism are not available, anecdotal evidence
from the many calls I receive on a regular basis from parents of young adults with autism who
are between the ages of 18 and 25 and sitting home or in day programs and want to work
substantiates these reports.
We know people with autism can become contributing members of the competitive labor market
when provided with the individualized services and supports that enable them to work.
Supported and customized employment services provided by skilled professionals, known as job
coaches, are essential to insure that quality supports and accommodations are in place for
successful employment. Illustrations of success in Kansas and the nation are numerous. For
example, Gary, an adult with autism, works as an Office Assistant in a bank where he has been
employed for more than ten years. John, a young man with autism, owns a very successful
popcorn business whose customer base extends way beyond his home state of Kansas.
Youth and young adults with autism who work in competitive jobs become tax paying citizens
and contributors to the Kansas economy. Studies show that those persons with disabilities who
are working in integrated employment earn incomes that are 250% to 300% higher than those in
segregated day programs (APSE: The Network on Employment, 2007). Taxpayers receive more
than $1.00 in benefits (taxes paid, reduced government subsidies, and elimination of segregated
program costs) for each dollar of public investment in supported employment services
(Choosework, 2007). A recent study indicates that costs are much cheaper for supported
employment than sheltered work; for every person funded in sheltered work, 2.82 supported
employees could have been funded in the community (TRN InfoLines, 2008). In addition,
research indicates that individuals with autism who work and receive supported employment
services exhibit improved cognitive performance as compared to their unemployed peers
(Garcia-Villamisar & Hughes, 2007; retrieved from
http://www.ncbi.nlm.nih.gov/pubmed/17217478).
Based upon the benefits of work for individuals and society, why are so few people with autism
actually employed? Failure to determine support needs and effective ways to provide supports
have been identified as major contributing factors (Holmes, 2007). The unique and varied
characteristics of individuals with autism and their wide range of skills, interests, abilities, and
support needs poses challenges to education and adult service agencies in their efforts to achieve
post-school outcomes. My experience is that individuals who exhibit specific talents or excel in
certain areas are often perceived as being able to work and are placed in employment without
adequate supports and accommodations ultimately resulting in job loss. On the contrary, other
individuals who exhibit skill deficits, behavioral issues, or communication limitations are often
underemployed in jobs that address their challenges without taking into consideration their
strengths which often results in boredom, increased behaviors, poor performance, and
termination. Often what is seen as a problem interfering with employment can be an asset to an
employer when an individual is matched to the right job.
Good transition planning and services are essential for enhancing these bleak outcomes.
Transition planning needs to begin early on but no later than 14 years of age. The focus should
be on what does this student and his or her parents want for his or her adult life after leaving
school, e.g., postsecondary education, independent living, employment. This transition plan
becomes the blueprint for achieving that outcome and is accomplished through IEP goals that are
established and evaluated each year. Transition is a shared, longitudinal, outcome-oriented
process that involves all key persons and adult service agencies; no one entity can do it alone.
School is the time for exploration to determine likes and dislikes, learning styles, support needs
and preferences, environmental characteristics, and interests/passions. Functional information
from natural environments gained through community-based instruction and work experiences is
the most useful. For example, learning to interact with one's supervisor is most effective through
actual on-the-job experience at real businesses in the community as skills learned in isolation
often do not generalize to other settings. In addition, determining what kinds of supports and
accommodations are most helpful to an individual is invaluable information for those responsible
for job placement. It is important to provide multiple and varied community-based work
experience opportunities while in school starting generally and becoming more specific as
graduation nears. The number one predictor of successful employment after graduation is paid,
permanent employment while still in school.
To this end, several recommendations for building capacity and improving employment
outcomes for transition-aged youth and young adults with autism in Kansas are proposed.
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Establish an Employment First priority from the executive office whereby integrated
employment is the first (or default) option of choice driving expectations, policies,
funding systems, and in time, service delivery.
Design and implement a longitudinal shared data collection, tracking, monitoring, and
reporting system across agencies to determine outcomes and gaps in transition service
delivery systems.
Provide professional development and in-service training opportunities for school
personnel on best practices in functional curriculum, transition, community-based
instruction, and employment for individuals with autism.
Develop transition policy which allows for collaboration including shared funding
and personnel resources between education, vocational rehabilitation, and adult
service providers including the development of state-of-the-art 18 to 21 programs.
Enhance the value of employment and create provider incentives for real work
through funding rates that are higher for community integrated employment and
lower for segregated day services.
Address family concerns and elevate expectations through the provision of resource
materials, parent/professional trainings, access to benefits planning, sharing of
success stories, and safety nets following unsuccessful jobs.
Increase the availability of supported and customized employment through the
provision of job coach training for school and adult service personnel focusing on job
development, training, and retention strategies.
Implement an on-going mechanism for information sharing and technical assistance
for all key stakeholders on job matching, customized placement, and creative support
resources such as job carving, created jobs, resource ownership, self-employment.
Insure quality supported and customized employment services by implementing a
system of quality control, certification, evaluation, and accountability that is guided
by data-based decision-making.