For the past 2 years, stakeholders from all corners of the autism community have been working collaboratively under the umbrella organization "Advancing Futures for Adults with Autism" to come up with policy recommendations to address an impending crisis: the demand for currently non-existent services for the rapidly growing population of adults with autism. School based services and supports stop cold when individuals "age out" on their 21st birthday. What happens to people with autism for the next 50+ years of their lives? This morning, we're holding an "Autism Congress" hosted by Co-Chairs Senator Bob Menendez and Congressman Mike Doyle in the Kennedy Caucus Room of the Russell Senate Office building to lay out our priorities to legislators and policy makers. We're asking for their attention not just because it's the right thing to do...it's the smart thing to do. Getting ahead of the curve on these issues will enhance lives and save a ton of money!
Unlike many issues in the autism community: causation, incidence, research priorities, therapies, etc., individuals with autism spectrum disorders (including Asperger's syndrome), parents, advocates of all stripes, and existing service providers are largely in agreement on adult issues. It's all about Community Life, Employment, Housing, and Cross-Cutting issues (like funding and safety).
The recommendations were crafted via think tanks and a full day national town hall held last November. The town hall linking stakeholders from all over the country via video and satellite. We worked our tails off on behalf of ourselves, our kids, our adult children, our constituents, or our clients to cut through the noise and craft consensus. It was a long, informative and rewarding process. The executive summary can be found here: http://www.afaa-us.org/...
I'm going to highlight our strategies below. If you're interested in seeing how to get there, please read the above summary or go to the Advancing Futures for Adults with Autism website for our full, detailed report: http://www.afaa-us.org/...
First, many may ask why can't existing developmental disability policies and infrastructure help adults with autism when they "hit the system" at age 21? The answer is that these structures and policies were largely designed to help individuals with Down Syndrome or other cognitive impariments. Autism is a wide spectrum disorder and often presents service providers with challenges that exceed their historical mission that they are neither trained for nor staffed to handle. For example, for some adults with autism, a one or two to one staffing ratio might be needed for someone with behavioral challenges. That is a near impossiblity for most existing support providers or facilities. Many of our existing adult population have been "kicked out" of the system. Most live at home...which presents it's own challenges to parents and cargivers. What happens if they are unable to provide care or die?
Other individuals may need minimal support. Another example is the support a college educated individual with Asperger's Syndrome may need to get (and hold on to) a job. It can be very challenging for some with social differences or impairments to navigate an office environment. I've spoken with highly qualified people with multiple graduate degrees who can't get past first base on a job interview or some who go from job to job to job because they can't read social cues or act "typically". Most could hold down jobs if simple supports were put in place. People with asd's are terrific employees if planning and support is in place, but now, it only exists at a few trailblazing companies like Walgreen's and Home Depot. I could give you dozens more example why these policy changes are needed but cutting to the chase, here are our priorities.
Cross-Cutting Strategies
Strategy #1: Change existing systems to ensure funding streams follow the person, and can be used in a variety of ways to meet a person’s unique and evolving needs.
Strategy #2: Increase the availability of qualified and motivated personnel who support adults with autism.
Strategy #3: Ensure that adults with autism have access to the supports they need to develop the life skills necessary to live safe, independent and productive lives.
Housing Strategies
Strategy #1: Engage leaders and institutions that direct capital and influence housing policy by presenting a clear, compelling picture of the substantial demand for housing options for adults living with autism.
Strategy #2: Increase collaboration and coordination among housing and service agencies at the local, state and federal levels.
Strategy #3: Motivate the overall real estate community (including government agencies, developers and others) to create housing options that are transit-oriented and accessible to employment and recreation, and increase opportunities for independence and integration.
Strategy #4: Direct support toward residential service models that are person-centered and actively seek to meet the needs and interests of adults living with autism.
Strategy #5: Expand both public and private funding for residential services for adults with autism.
Employment Strategies
Strategy #1: Engage employers by presenting a clear and compelling picture of the benefits of employing adults with autism.
Strategy #2: Increase and expand the number of successful programs that match adults with autism with meaningful jobs.
Strategy #3: Ensure ongoing accessibility to employment supports (including both technical and social dimensions) for adults with autism.
Strategy #4: Encourage employers to develop model programs that adapt the work environment to help adults living with autism be productive and successful employees.
Strategy #5: Create and expand career development and vocational skills training programs while individuals with autism are still in the educational system.
Strategy #6: Create meaningful alternatives to traditional employment, such as volunteering, entrepreneurial and self ownership opportunities.
Community Life Strategies
Strategy #1: Create a comprehensive public awareness campaign that enables the general public to better understand, engage and support adults with autism and their families.
Strategy #2: Educate local recreation organizations as well as the community about the positive benefits of including adults with autism in their programs.
Strategy #3: Educate first responders about the challenging behavior that might arise in dangerous situations involving adults with autism so they are prepared to handle these occasions in the safest and most effective manner.
Strategy #4: Assist adults with autism to access public and private transportation making it possible for them to live, work and recreate where they choose, including providing training for transportation service providers enabling them to be more responsive.
Finally, if housing issues are your thing, this related report (linked below), prepared by the Southwest Autism Research & Resource Center (SARRC), Arizona State University, and others, is absolutely the state of the art on housing issues for adults with autism. It highlights the range of current choices for residential models and development options...from individual apartment units/condos to group homes to campus or village based to rural agricultural communities (some with Commmunity Sustainable Agriculture "CSA" programs!).
http://www.autismcenter.org/...
On behalf of the autism community, thanks for your support. Now, and especially when we meet each other over the backyard fence, at the grocery store or movie theatre, or at work in the years to come.
Update: Thanks for the rescue!
Quasi or real segregation permeates our culture (and most others too), whether it's autism, other developmental disability, or mental illness. It pains me most of all that my own baby boom generation, which has a pretty good track record of achievement in breaking down barriers, has shown little interest in including adults (or kids) with autism, people with other developmental disabilities, or those with mental illness. The "if disabled kids are in my kid's class they can't get into Harvard" or "special ed budgets keep our school from helping gifted kids" is all too pervasive...and factually wrong. Inclusion helps typical kids in many ways. Ask your college placement counselor!
Then, when our kids turn into adults, it's as if they don't exist or are to be avoided, save a charity event every now and then (not that I'm an ingrate...I appreciate all support large or small). But we hear all too often, "A group home on our block? Think of the decline in property values! No way." or "A zoning change to allow disabled people access to our community? Impossible!" Unfortunately, NIMBY is alive and well as it impacts adults with autism and other developmental disabilities. Instead of knee jerk opposition, working together can bring (and has brought) great results!
But perhaps more meaningful may be the time when you come across a group outing at the mall or ballpark or movie, or have an interaction with someone who's on the autism spectrum or has a disability. If you do, please consider slowing down and think about whether it could be a teaching moment for your family or an opportunity to make somebody's day (which includes your own)!
Diversity is just that, diversity. Including and recognizing that disability and difference exists in kids and adults and reaching out helps all of us at least try to be better people.
The good news is that we're starting to get a bunch of policy makers, legislators, and real folks to listen. These guys are helping too:
http://www.equipforequality.org/
Thanks again!