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Statement of Need - The Autism Epidemic and the Need for a National Comprehensive Policy for Adults with Autism by our Government: Creating a Menu of Replicable Models for Community Living Options for Adults Across the Autism Spectrum

A national health care crisis of unprecedented magnitude looms for adults with autism, their families, and the ill-prepared and under-funded adult services systems in our country charged with meeting their needs

Autism spectrum disorders (ASD) are the fastest growing developmental disabilities in the United States. The Centers for Disease Control and Prevention now recognizes that ASD affect one in every 91 individuals. Now an epidemic, it is estimated that more than 1.5 million people in the U.S have ASD. The number of adults living with autism today is less certain. Some experts cite that roughly 80 percent of those individuals with autism are under the age of 22. According to the Autism Society of American, autism is increasing at a rate of 10-17 percent a year. The numbers of children who will become adults with autism over the next few years are only the tip of the iceberg. As these numbers continue to crest, some worry that we are approaching an “autism financial and societal tsunami.”

The economic cost of autism to our society is far reaching. In a 2006 publication titled “The Costs of Autism,” Michael Ganz, assistant professor at the Harvard School of Public Health, estimated that the lifetime costs for caring for and treating a person with autism in the United States is $3.2 million, totaling at least $35 billion for all people diagnosed with autism in the U.S. Ganz believes that lifetime costs to care for this population could be as high as $76 billion. Given that the federal autism budget has been, historically, less than $100 million per year, Ganz hopes his research will provide a useful reference for policymakers and advocates to help them more fully understand the financial impact of autism on U.S. society so they will allocate the scarce but necessary resources to properly serve the needs of this population.

According to a document prepared by the Organization for Autism Research for a gathering in 2009 called the Current State of Services for Adults with Autism

  • The majority of adults with autism (85%) continue to live with parents, siblings or older relatives.
  • Outcome studies of adults with ASD document that, independent of current ability levels, the vast majority of adults with ASD are either unemployed (about 80%) or underemployed.
  • While some appropriate and effective residential and employment models exist, access to these models is greatly restricted due, primarily, to a lack of adequate funding.
  • The current economic slowdown can be expected to a have a direct, and negative, impact on the availability of adult services

A California Legislative Blue Ribbon Commission on Autism summed it up this way: “People with autism spectrum disorders will be served by a public response one way or another, either by humane policies and informed programs or by poverty, homelessness or a dehumanizing criminal justice system.” The members of the ARCHway Consortium believe that the moral test of government is how that government treats the sick, the needy and the handicapped.

An entire generation of our nation’s most vulnerable citizens is about to leave the entitlement-based world of special education and enter the under-funded and already overwhelmed arena of non-entitlement adult services

According to the National Association of Residential Providers for Adults with Autism (NARPAA), although more than 600,000 adults with autism live in the United States, as of 2008, there are fewer than 30 identifiable residential providers currently specializing in autism-specific residential homes, facilities and services in the country. These facilities serve only around 1,500-2000 adults with autism, leaving parents of adult children with autism to fend for themselves.

This enormous, unmet need in our country for housing and high quality services has become an unacceptable daily hardship for hundreds of thousands of families in the U.S., families struggling to provide a meaningful and productive life for loved ones who have aged-out of school. Consequently, parents of adults with autism feel great fear, uncertainty and confusion about what will eventually happen to their children when they're gone

While federal dollars have been primarily focused on issues of prevention and early intervention for young children with autism, the federal government now desperately needs a proactive strategy to meet the needs of an exploding number of adults with autism. Local, state and federal funding sources must be maximized, and funding levels for programs must consider the unique, complex and shifting needs of adults with autism.

A national comprehensive autism policy must tackle any number of complicated issues relating to the costs to fund a wide range of needed services. These costs include: In-home and community based supports; residential services and supports; employment supports and adult day services. Other problematic issues need to be tackled as well, including the serious problem of the lack of autism-specifically trained support staff needed for group homes, community living options and supported employment options (with an average annual staff turnover rate of about 50%).

It is important to note that the initial property costs (purchase or building costs of the actual residence) represent a relatively small expense when compared to the overall operating expenses of residential programs. As such, it is of critical importance that the availability of adequate long-term funding be taken into consideration when deciding upon a particular program model. A national comprehensive autism policy must provide for an appropriate budget for operating expenses for community living options. These funds must include appropriate living wages and benefits for support staff as well as funds for appropriate training staff training in a national best practices curriculum.

In 2006, the New Jersey Center for Outreach and Services for the Autism Community (COSAC) convened a meeting called “Meeting the Needs of Adults with Autism” to create “A Blueprint for the Future”.

Their report noted a consensus in the autism community around several key areas:
  • The autism community should advocate for a lifelong entitlement for services for adults with autism.
  • Families and adults with autism must have more control over services and more discretion over use of resources.
  • Adults with autism should have every opportunity to live and work in the communities they choose, with supports and services they and/or their families select and control.
  • Adults with autism have a unique and complex constellation of needs, distinct from those individuals with intellectual disabilities, in the areas of receptive and expressive communication, social skills, behavior and sensory issues, and environmental needs.
  • Autism is a spectrum disorder, and the full range of its functional abilities and limitations must be considered when planning services and supports. Those with the capacity for more self-direction must be afforded the opportunity to build on individual strengths to maximize independence.
  • A “best practices” curriculum needs to be implemented for direct care professionals with measurable standards in areas such as safety skills, assessment and interventions for challenging behavior, crisis intervention, community integration and general knowledge of autism spectrum disorders.
  • The support needs of an adult with autism are subject to change during the lifespan, so the level of public fiscal support must periodically be reassessed.

In 2009, Advancing Futures for Adults with Autism conducted a think tank with key stakeholders on the central issues concerning adults with autism. Click here to view a pdf of their findings. (Think Tank Findings Report)

While this report offers many important stepping stones to define a way forward regarding national policy, it does not yet offer the layperson a clear approach to achieve their goals. A comprehensive national policy is critical, because many states currently do not have the adequate funding to provide housing and support services for adults with autism around the clock. We must all support a comprehensive national policy that provides all state development disability agencies with enough funding to take everyone off these long waitlists for residential funding, support services, as well as job and vocational training for adults with autism.

To download a PDF version of Advancing Futures for Adults with Autism's November 2009 National Town Hall Meeting Participant Guide, go to www.afaa-us.org (near the bottom of their home page).