Largely absent from local and federal policy discussions is the issue of an ‘aging up’ Autism Spectrum Disorder (ASD) population. In truth, alarm bells should be ringing loudly and repeatedly. Massachusetts and the country face a looming social policy and public health crisis, as a wave of ASD youth enter adulthood and no longer legally qualify for a range of education and social services, or therapeutic care they and their families currently receive.
Consider the following:
- A coming surge – Nationally, an estimated 500,000 ASD children will reach adulthood in the next 15 years. Within the past seven years, the number of students with autism in Massachusetts has doubled.
- Shortage of residential services – 81,000 ASD youth/adults are currently on waiting lists for residential programs and services in various states.
- Accessibility/affordability – Exemplary programs are too few and not accessible for all, based on location and cost. Low income families and/or families whose ASD members do not meet disability services requirements are often not able to afford programs and services. Approximately two-thirds of funding for ASD adults goes to those assessed as “high needs” by the Department of Disability Services (DDS), leaving out the majority of ASD adults.
- Primary focus on education/children – the majority of ASD related funding and services in states addresses the education and therapeutic needs for ASD children (21 years of age and under). By comparison, few resources have been invested in services for ASD adults and these have decreased in recent years. This includes funding for disability-specific training for adult ASD direct care providers and supervisors.
Thus, there is a pressing need for accessible, quality community residential programs and services for the rapidly growing ASD adult population. For one, we need new models of sustainable housing development for ASD adults that, for example, bring together HUD, municipalities, banks and mortgage lenders to convert abandoned and foreclosed properties. Second, we need effective partnerships with social-service, education, employment and health care agencies to address the wide range of challenges faced by ASD adults and their families. Lastly, we need higher education partners to properly train education and care providers working with ASD adults.
Movement along these fronts will require creative and bold leadership and dedicated resources. There are many people and organizations (e.g. Wheelock College , the Autism Consortium , Advocates for Autism of Massachusetts , the Institute for Community Inclusion , the Corporation for Supportive Housing , etc.) ready to act and armed with the know-how to lead the solutions we need. Now all of us – public officials, business and community leaders, and concerned citizens—have to rally behind this critical issue.
Jake Murray is the Senior Director of Aspire Institute. He has over 20 years of experience in the education, health and human services fields, serving as an organizational leader, policy analyst, and strategic planner.