This is a blog post by Shelley Ourian, a young woman who participated on the stakeholder panel during the Advancing Futures for Adults with Autism Congressional Briefing last July in Washington, D.C.
It’s been a year since I was invited to participate in the Congressional Briefing sponsored by Advancing Futures for Adults with Autism (AFAA) in Washington, DC last July. I was a part of the Stakeholder Panel, along with a few other individuals living with autism and their family members. Looking back on the whole experience, I felt very humbled to be in the presence of many brave individuals, dedicated to make people more aware of the need for more funded programs for adults living with autism. The moderator, Linda Fiddle, founder of The Daniel Jordan Fiddle Foundation, was such a wonderful addition to the Briefing. It was amazing how she took so much time to get to know all of us individuals and to guide us through the process of advocating for ourselves and for everyone with everyday challenges. If I could something like this all over again, I would do it in a heartbeat!
What I hope for in the future is for there to continue to be a positively growing progress in funding for programs for adults living with autism throughout the United States. I also hope for the neurotypical population to see those adults as equals…as human beings who can bring their own abilities and contributions to society.
To view the summary of the AFAA Congressional Briefing, visit the AFAA website at www.afaa-us.org.
This is a guest post by Shannon Knall, Autism Speaks Connecticut Chapter Advocacy Chair.
President Obama’s Federal Budget for the Fiscal Year 2012 allocated funding to various programs and initiatives designed to help “Win the Future for People with Disabilities.” These proposals include: expanding autism research, increasing support for workers with disabilities, and increasing funding for the education of children with disabilities. Click here to read more.
Have you met my son Jack? He’s pretty awesome. Ok, I’m kind of biased, but he really is. He’s handsome and smart, with a goofy sense of humor. He loves to play the violin, go bowling with his friends, eat pizza and watch old Tom & Jerry cartoons. He has two brothers, who are equally awesome, and they spend a lot of time being gross boys together. You know, laughing about gross boy things. Jack likes hotels a lot and spends a lot of time researching them, because he wants to own a hotel when he grows up.
Sounds pretty typical on paper, doesn’t it? Jack has autism. And in that one word, anything typical goes right out the window… and fast.
His past, present and future are anything but typical. As his mother, I am plagued by questions about how my baby boy “got” autism. I am constantly fighting someone for access to insurance coverage, or for his therapies, or for appropriate educational services. Like most parents of a child with autism, I lie awake at night wondering how my child will support himself, because although he is very smart, the social and communication deficits that are the core of autism will make sustainable employment very challenging – and that’s if there is even a company that would hire him.
One out of every 110 people in America today is a “Jack.” The tsunami is coming.
In my life as Connecticut’s advocacy chair, I try to read and process as much as I can about policy and legislation that may impact all of the “Jacks” here in my state, so I can be as effective as possible when communicating the needs of our community to state and federal policy makers. I am NOT a policy maker, but I’m a mom advocating for my very own Jack and every time I see “autism” in a legislative document, I consider it a victory. Having been at this autism gig for over seven years now – helping my state enact autism insurance reform law, as well as cultivating a close working relationship with elected officials – I also have a pretty decent understanding of what it takes to get policy-makers to pay attention to the issues that affect individuals with disabilities like autism.
I recently read President Obama’s federal budget proposal for people with disabilities, which became the impetus for this blog piece. I was pleased to see that the President’s proposal included funding for research through the NIH (National Institute of Health), so that we can get to the root of the autism epidemic and provide appropriate treatments for our families. The President’s proposal also includes “a $200 million increase for the Individuals with Disabilities Education Act (IDEA) State Grants to provide a high quality education and help offset state and local education costs for children with disabilities.” Among other recommendations, the President’s budget plan proposes funding to encourage workforce innovation to make jobs accessible to people with disabilities (as Walgreens Distribution Centers has done) and suggests appropriating “$24 million to the Department of Labor for the Disability Employment Initiative, which awards grants to build the capacity of One-Stop Career Centers to serve individuals with disabilities.”
I might actually sleep a bit tonight knowing these proposals exist. I’m also comforted knowing that Autism Speaks has developed resources for kids like Jack as they make their way through adolescence towards adulthood (see links below).
Make no mistake, this is not a political endorsement. Autism is not defined by a political party. It is defined by the families who live it day in and day out. That being said, I do hope our elected officials in Washington, DC read this blog entry and take it to heart. One out of every 110 people in this country are relying on them to help us take care of our precious children.
For more information:
This Family Services blog post by Marianne Sullivan, the Assistant Director of National Outreach and Resources for Autism Speaks. Marianne is the mother of an 18-year-old young man with autism.
California’s Taft Community College offers an invaluable Transition to Independent Living (TIL) program that provides adults with developmental disabilities the opportunity to work, live independently, and participate in their community while they earn a Transition to Independent Living certificate.
About two weeks ago, a group of us from Autism Speaks visited the Taft program in Kern County in hopes of gaining insights into this successful program. As the mother of a son with autism who just celebrated his 18th birthday, and as a member of the Family Services Team at Autism Speaks, I know the impact of watching a child with autism become an adult with autism. I know all too well that the future will bring yet more concerns. For me, one of my greatest sources of hope comes from all of us working together to figure out what works and what doesn’t for the growing numbers of adults with autism.
The TIL Program at Taft is a two-year residential program that began in 1996. The program has a proven track record, with 82 percent of its graduates living independently. Currently, one third of the TIL students have autism, and the staff at TIL expects to see the demand increase as more and more individuals with autism transition to adulthood. Jeff Rose, the Director of Student Support Services, said that this year, one out of every two applicants seeking admission to the program is an individual with autism.
Students come from all over California to enroll in the TIL program, which immerses participants in an inclusive environment on a mainstream campus. The program provides instruction, training, and support in real world skills, with an emphasis on vocational skills; in other words, it helps individuals work toward obtaining real jobs for real pay. As part of our tour, we visited the dorm rooms of first year students, along with several homes in the community that house students during their second year. We found that students were successfully taught how to move about their community easily; going to grocery stores, churches, coffee shops, and movie theaters.
We had the opportunity to speak with a group of TIL students during our tour. Most shared their personal experiences in the program. Autism Speaks Board Member Brian Kelly asked the students, “What is your dream job?” Students gave a variety of answers, including a preschool teacher, a cartoon artist, and an IT support specialist. Although the dreams varied, the students expressed the motivation and commitment they will need in order to go after their dream job. They also recognized the TIL program as a stepping stone towards achieving their goals. The important insight our group took home is that students at TIL will have the opportunity to do just that. We all know that people with autism need to have opportunities to learn how to live independently, and get and maintain paying jobs. We also know that the more opportunities these individuals have, the greater skills and confidence they will be able to develop, and the greater the chances of realizing their goals.
Autism Speaks recognizes the tremendous need for programs such as Taft and asks other community colleges across the country to join Taft in developing transition programs to better prepare students with disabilities. In July 2010, Advancing Futures for Adults with Autism (AFAA) developed an agenda for life-long living and learning for people with autism. AFAA’s agenda represents new projects/initiatives, and policy changes that will influence the quality of life for adults living with autism today!
For more information about the TIL program at Taft College visit www.taftcollege.edu
or call (661) 763-7775. You can also e-mail requests for information to firstname.lastname@example.org.
Taft’s TIL program has been awarded a Federal TPSID Grant and is part of the consortia of institutions under the model comprehensive Transition Programs for Students with Intellectual Disabilities (TPSID). There are 27 TPSID grantees, located in 23 states, http://www.ed.gov/news/press-releases/us-secretary-education-duncan-announces-109-million-awards-under-new-programs-he
This is a guest post by Gene Besinger. Gene is a parent advocate on issues affecting adults with autism.
“Agricultural Communities for Adults with Autism” is the name of a new alliance of the two dozen or so existing agricultural communities (and several in formation) spread across the country.
For some adults with autism, agricultural communities can be a very important lifespan option that elegantly and simultaneously addresses the two largest issues facing our community: a 95% unemployment rate and severe housing challenges for many adults with autism. These challenges were highlighted in detail by the recent Advancing Futures for Adults with Autism initiative, led by Autism Speaks and partner organizations. If you aren’t familiar with this effort, please visit the website to learn more. (www.afaa-us.org).
Everyone in an agricultural community has an interesting, stable, meaningful job of their choice. For example, some manage and staff community supported agriculture (CSA) programs (several of our communities have highly successful ones), there are many livestock related tasks available, some adults choose to be farmers by growing food, some maintain machinery and equipment. All the jobs are driven by individual choice, interests, and ability. Many of our adults enjoy an active lifestyle and outdoor tasks, some prefer indoor jobs.
Housing is also a very tough issue for adults with autism. Nearly 80% of people with autism aged 19-30 live in their parent’s home versus 32% of typical young adults. High costs and the lack of safe, good choices are a big reason why. We can help solve this issue for some adults. But we can’t keep up with the demand.
Every single one of our communities has a huge waiting list. Turnover rates are near zero. We get daily inquiries from people all around the world who would like to have the option of a model like one of ours. In spite of this huge, demonstrable demand, new agricultural communities are very difficult to get off the drawing board. This strikes us as a big policy problem that needs fixing.
We’ve created our organization because we think there ought to be two hundred or more communities in the U.S., not two dozen. We’re sharing best practices with one another and helping people navigate the considerable roadblocks to new community formation.
Our communities range in size from 4 to 30 beds. Most have day programs and jobs for adults from nearby areas. None of us are “institutional” or “congregate” in the sense of the large multi-hundred bed DD communities that many activists want to see closed down. We cannot be large because large simply doesn’t work for most adults with autism. In fact, many of our current residents tried that route and either didn’t do well or got kicked out due to behavioral issues.
We believe that rural community based solutions and person centric planning and funding should be available to those who want it. Most adults in our communities live in individual apartments in a few on-site four to five bedroom single family homes. Our sites range from a few to over a hundred acres. Our farms and homes are mostly within walking distance to small and medium sized communities. We’re not isolated outposts at the fringes of civilization, as some wrongly assume; we’re highly integrated members of our non-urban communities.Our residents and our many day program participants shop, recreate, worship, and interact with our neighbors on a regular basis.
If you have interest in learning more about “Agricultural Communities for Adults with Autism”, please contact the folks who started it all here in the United States 25 years ago (and are still going strong), Bittersweet Farms, just outside Toledo, Ohio. Vicki Obee-Hilty, Bittersweet’s terrific Executive Director, and her staff will put you on an email and conference call list. www.bittersweetfarms.org
Family Services provides resources and information. If you have a question, contact the Autism Response Team today. If you’re concerned that your child may be affected with autism or if you’ve received a diagnosis, browse the Tools for Families section, where you’ll find our 100 Day Kit, and the Autism Video Glossary. If you’d like to do a quick search for service providers near you, selectFind a Local Resource and browse the Resource Guide.
In a story scheduled to air tonight, ABC World News Tonight with Diane Sawyer will feature Autism Speaks Executive Vice President of Programs and Services Peter Bell and his family in a segment on preparing adolescents with autism for life as adults. ABC recently spent the day following Peter and his wife Liz at home as they build a transition program for their 17 -year-old son Tyler, who has autism. The segment will highlight the challenges many families face in preparing their children for adulthood when educational entitlements go away and services are limited and opportunities are few. For more information on what Autism Speaks and other organizations are doing to improve the outlook for adults with autism, please visit Advancing Future for Adults with Autism.
Click here to find the viewing time in your area.
This is a guest post by Sharon Rosenbloom. Sharon is a speech and language Pathologist, autism consultant, and author of the award winning book: Souls: Beneath and Beyond Autism. She is the mother of Joey Rosenbloom, a 22 year old with autism. Sharon and Joey, along with their family members Raia and Bob, are passionate advocates for individuals living with autism – especially those with limited access to communication.
On July 15, my son Joey climbed the steps of the Russell Senate Office Building on Capitol Hill, Washington, D.C. Watching him, it struck me that for a person with autism; this was not so much “The Hill” as yet another mountain to be climbed. To the casual observer, those steps looked deceptively easy. But for Joey, a 22-year-old man with autism, the journey that brought him to Washington, D.C. with the honor of testifying as part of the Advancing Futures for Adults with Autism Congressional Briefing had been a long and arduous one. This was never more evident than as he ascended those steps. Only those of us who live in the world of autism can imagine the amount of effort it took for Joey to simply wear a suit, let alone develop the skills to access a voice, manage crippling anxiety and transcend the abyss from autism to the steps of this historical government building.
As both Joey’s anchor and rudder, I begged my eyes to stay dry and my heart to stop racing, in order to be the calm presence he needed as he viewed this audience of influence seated before him in The Kennedy Caucus Room. On every level of our senses, each of us at that table knew the importance of this unprecedented event: here sat the faces of adults with autism, each one representing a story of relentless effort and unwavering hope. Finally, beyond the statistics and symptoms, those given the label of autism were truly going to speak. I knew all too well that each panelist with autism had spent their entire life being judged for what the textbooks called “idiosyncratic” behaviors. Yet on this day, these remarkable individuals were being given an opportunity to represent the truth about what adults living with autism have the potential to be, and how the ceaseless love and energy poured onto them yielded extraordinary returns on that investment. As Joey fidgeted with the microphone, I was filled with profound respect for him that dropped a blanket of calm over the sharp edges of my apprehension. Overwhelmed by emotion, I took Joey’s hand, and he let me hold it. I found myself replacing that familiar anticipation of stinging public scrutiny with a prayer that those watching might see each panelist with the eyes of their hearts, listen with their minds wide open and ready themselves for paradigms to shift.
As the last thought was shared and the audience rose to their feet, filling the room with applause, I caught a glimpse of something I had never seen: pride, spreading like a smile across my son’s face. It was then I knew I had witnessed a milestone event which had lit a small candle of hope for Joey, and for all those labeled with autism: that by the miracle of human connection they might now be viewed, if for only those brief moments, through a truer lens.
As a society, we have an obligation to secure a brighter future for individuals with autism spectrum disorders. By taking action now, we can ensure that adults with autism break free of the all-too-common status of “dependency” and become engaged, involved and ideally, tax-paying, members of their communities. It is time to develop and drive policies that provide for life-long living and learning with autism. Last year, in response to this urgent need, Autism Speaks assisted in the formation of Advancing Futures for Adults with Autism (AFAA), a national consortium seeking to create meaningful futures for adults with autism that include homes, jobs, recreation, friends and supportive communities.
We love to share success stories of adults who have autism and we also look to recognize socially responsible companies who help them on their path to independence. The video below highlights Ryan, an adult with Asperger Syndrome and his positive experience working at Best Buy.
We also would like to recognize Best Buy for its efforts in hiring adults with autism and developing their careers. Best Buy has a new program called FACE – Facing Autism in a Caring Environment. FACE is a Focused Involvement Network (FIN) at Best Buy. The mission of FACE is to build a community of Best Buy employees that will promote awareness of autism spectrum disorders (ASD) and support their families through networking, the sharing of resources and providing encouragement. The campaign was launched this month at Best Buy, and Ryan was a big part of the launch at the Best Buy headquarters in Minneapolis.
Join us in congratulating Ryan on his success (and the new car he bought with his earnings!) and in thanking Best Buy for its efforts to employ adults with autism to promote their independence.