The
past decade has seen dramatic reports citing the increase in the
prevalence of autism and related disorders. From an earlier
prevalence estimate of approximately 2-5 cases per 10,000 individuals
the figure most often cited today is approximately 4-7 cases per 1,000
individuals. The higher estimate results in the 1 case per 150
individuals most recently identified by the Centers for Disease
Control. While the reasons behind this increase remain unclear
and at times, controversial, what is generally accepted is that there
are greater numbers of children and, subsequently, of adolescents
and young adults, in need of appropriate services than ever before.
Unfortunately, the need fo services far exceeds the available
resources. In particular, for an individual with autism, the
transition from the educational system to the world of adult services
is, at best, ineffective, and at worst, nonexistent.
Unfortunately the result is that a generation of learners with ASD
(Autism Spectrum Disorder) and their families are left in a
programmatic, financial, and personal limbo. The resulting
economic cost is tremoundous and far-reaching. Autism is a
very expensive disorder costing our society upwards of $35 billion in
direct and indirect costs to care for all individuals diagnosed each
year over their lifetimes. Absent a concerted effort to correct
these inadequacies, these costs can only be expected to grow in the
coming years.
As an example of how this affects the Commonwealth of
Pennsylvania, in 2006 there were 3,020 school aged children (K – 12) in
Chester County alone with an educational classification of
autism. Given an average expenditure of $33,333 per year for each
learner in public education (and $55,000 per year for each learner in a
private educational placement) the expected cost of educating these
Chester County students with autism from the time they enter
kindergarten to the time they graduate exceeds $1.8
billion. Statewide, this translates into an expenditure of
more than $18.25 billion.
At no time since the
1950's , when Leo Kanner identified eleven learners with what he
called “autistic disturbances of affective contact” has interest in
autism been so high. Unfortunately, there has been a general
failure to capitalize on this interest, as well as a failure to
capitalize on the significant fiscal investment made by
the Commonwealth. This failure is evidenced by the
dearth of transition and adult services for individuals with
autism. The lack of an ineffective transition service
for adolescents with autism to competent adulthood means that a
generation of Pennsylvania’s most vulnerable citizens is poised to
languish at home, lpossibly losing the skills they
have learned, while waiting for services to appear.
MECA's ultimate goal is to provide a "bridge" between
the educational world of services to the world of adult services
by providing service coordination and assistance to individuals
with autism and their families. The establishment of the PAAL
program in 2006 was the first step in this process. The successful
launch of the ACE program in 2009 was the next step.
Transition to adulthood involves much more than simply learning a
set of skills. Among questions asked by individuals
with autism and their families are:
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Once I have learned some community skills, where do I use them?
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Where and how do I find a job?
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How do I get there and back?
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Who will help me once I am there?
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Who will train my support staff and monitor their competence?
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Who will help educate the community about me and my autism?
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What resources are out there to help me find a welcoming community
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To what public benefits am I entitled?
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How and when does SSI/Medicaid come into play?
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What is an IRS SEP plan? What is a PASS plan?
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Do my parents need to pursue legal guardianship me when I am an adult?
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Where can I live as an adult?
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What happens after my parents die?
MECA's
aim is to help individuals with autism and their families answer these
questions. To that end, MECA is pursuing a plan to open a case
management services agency called BRIDGES which will provide
service coordination. Securing available resources and
putting necessary plans into place would effectively “bridge” the
transition from school to adulthood.
BRIDGES will:
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Develop
a highly individualized program of formal and informal sources of
transition support for each individual in the PAAL program.
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Locate
formal sources of support include those provided by federal, county
and/or commonwealth government agencies.
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Locate
Informal sources of support including those available through
communities of faith, service organizations, youth groups, retired
senior volunteer programs, neighborhoods, and local businesses.
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Employ
data-based decision-making protocols and empirically validated support
strategies to provide instruction and training to adolescents and young
adults as well as to community members within the informal sources of
support.
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Directly
coordinate with PAAL to ensure instructional continuity between pre and
post-graduation services and supports.
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Focus
specifically on individual needs, preferences, and challenges to
develop a truly individualized program for each adult participant.
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Partner directly with parents and families of graduating individuals to coordinate all post-21 services.
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Work
with community stake holders (e.g. employers, restauranteurs,
laundromats, supermarkets, convenience stores, and related community
resources) to promote increasingly greater levels of active
participation for each individual with autism.
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Work
to develop individualized employment opportunities for each individual
thereby decreasing individual reliance on external sources of support.
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Work to reduce the long-term individual, familial, and societal costs of autism into adulthood, and
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Promote a long term vision of individual quality of life for adults with autism and their families.
In
summary, BRIDGES will develop an effective coterie of connections, or
"bridges" between the educational programming provided to PAAL
students, the programming provided to ACE participants, and the
demands of adult life. BRIDGES will provide case coordination to
identify available formal and informal sources of support, provide
training and instruction to community stakeholders, and create
opportunities for PAAL students and ACE participants to utilize
their skills to the direct benefit of themselves, employers, and the
community at large or, in other words, to be included, participating
citizens of the Commonwealth.
MECA intends to fully mobilize case management services by Fall of 2010.
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