Autism Acceptance Month – Day#7 :A driving force behind the change

In the 1980s, the number of individuals in Pennsylvania diagnosed with Autism Spectrum Disorder (ASD) has risen by over 2000%, from 2 per 10,000 people to over 40 per 10,000. State and local agencies responsible for providing care to this population, especially the Special Education system and the Mental Health/Mental Retardation system, have struggled to meet their needs, but have lacked appropriate resources, planning, and vision. In response to this growing problem, Estelle B. Richman, Secretary of the Pennsylvania Department of Public Welfare, created the Autism Task Force. This Task Force, which is comprised of over 250 family members of people living with autism, service providers, educators, administrators and researchers, was
charged with developing a plan for a new system for individuals living with autism and their families that would make Pennsylvania a national model of excellence in autism service delivery.

As a rule, there are fewer services available to individuals living with autism as they age. Nowhere is this more apparent than when individuals turn 21. Adults living with autism have no entitlements to any services. Depending on their abilities and needs, adults with autism could benefit tremendously from various levels of vocational, educational, and life skills training, as well as supported housing
arrangements. If proper community supports are put in place, many (if not most) adults living with autism can become productive, tax-paying citizens. Without the proper supports, these same adults often live atbhome, resulting in personal hardship for themselves and their families. When families are unable to assume the financial realities or caretaking responsibilities for their loved ones living with autism, these
individuals are often sentenced to a life in an institution or heavily supported housing. This can cost the state upwards of $100,000 per individual, per year.

Just as autism is a spectrum disorder with a wide range of presentations, families living with autism vary widely, reflecting that persons of all ethnic and socio-economic groups are affected. It follows that families
have differing beliefs, strengths and resources to bring to bear in facing this challenge. The current system
places the burden on families to seek information on autism, learn what services are available, apply for those services, and, once receiving them, coordinate services from different sources. At the same time, it
provides few resources to assist families in doing so. Families who do not have necessary financial.resources, do not have a strong command of English, are not aware of how state and local bureaucracies
function or related responsibilities, do not live in locations where services are readily available, do not have the tools to advocate for their children, or come from groups that are traditionally underrepresented
or discriminated against, face even greater challenges in obtaining appropriate services for their family members with autism.

While we have made improvement over the past decade and a half ago, there is a more prevelant need for more spectrum specific services locally to accommodate needs of individuals on the spectrum. The question is always of what system should it be housed under. A suggestion might be to create a new department and model and make it a inclusive model using new and existing supports to meet the individuals best need. To enhance this delivery, individuals on the spectrum should be employed in some aspect when ethically possible to create a mutual support system as well as utilize the talents of individuals, as many do attend post secondary School, including several at the Office of Vocational Rehabilitation’s Commonwealth Technical Institute at the Hiram G. Andrews Center. (I have wrote an article about my time there years ago. Things have enhanced for individuals on the spectrum and we will include this resource this week.) Individuals attend other education entitles. With several individials having an IEP in school, many utilize Vocational Technical Schools to acquire a trade, of which Perkins grants are used for the assistance of Special Education students within the Vocational Technical Realm. Some do go to the Colleges and Universities. Likewise, some of the big name Universities have autism specific programs.

In closing of today’s post, we know there’s a need, let’s do something about it, not just kick the can down the road, it’s not going away anytime soon.

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