Bridging the gap between education and the demands of adult life
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 of 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 tremendous 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, possibly 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:
- Once I have learned some community skills, where do I use them?
- Where and how do I find a job?
- How do I get there and back?
- Who will help me once I am there?
- Who will train my support staff and monitor their competence?
- Who will help educate the community about me and my autism?
- What resources are out there to help me find a welcoming community
- To what public benefits am I entitled?
- How and when does SSI/Medicaid come into play?
- What is an IRS SEP plan? What is a PASS plan?
- Do my parents need to pursue legal guardianship me when I am an adult?
- Where can I live as an adult?
- 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.
- Develop a highly individualized program of formal and informal sources of transition support for each individual in the PAAL program.
- Locate formal sources of support include those provided by federal, county and/or commonwealth government agencies.
- Locate Informal sources of support including those available through communities of faith, service organizations, youth groups, retired senior volunteer programs, neighborhoods, and local businesses.
- 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.
- Directly coordinate with PAAL to ensure instructional continuity between pre and post-graduation services and supports.
- Focus specifically on individual needs, preferences, and challenges to develop a truly individualized program for each adult participant.
- Partner directly with parents and families of graduating individuals to coordinate all post-21 services.
- Work with community stake holders (e.g. employers, restaurateurs, laundromats, supermarkets, convenience stores, and related community resources) to promote increasingly greater levels of active participation for each individual with autism.
- Work to develop individualized employment opportunities for each individual, thereby decreasing individual reliance on external sources of support.
- Work to reduce the long-term individual, familial, and societal costs of autism into adulthood
- 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.