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What Happens When You're Gone? Aging Out – ASD Adults & Their Parents Need Solutions for the Future

Posted Apr 01 2013 12:00am

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By Dan Burns

Our ASD kids turn 21 or 22 and the school bus stops coming, “student services” are gone and social services dwindle to a trickle, but life goes on for them. How independent will your adult child be? And what happens to our kids after you and I leave the planet? The good news: creative residential options are springing up around the country. Here are some ideas for creating live/work/play situations and environments that go beyond traditional group homes and could outlast us and our at-home care.

Diane Belnavis. Buy an abandoned house on a cul-de-sac and rehab it. Rent bedrooms to your ASD friends, who pay out of their SSI/SSDI and housing choice (Section 8) vouchers. If vouchers are not available, share with a housemate to offset costs. Your renters hire their own support staff as needed, so you’re off the hook. Your job is to provide vocational opportunities and extra income through home-based microenterprises, horticulture, or job carving. For example, you might grow vegetables and share a stall at a farmer’s market, or partner with a retirement village to provide painting, maintenance, or lawn care service – a job that is often done at cash-strapped senior centers by prisoners – in exchange for cash stipends for your guys. Enrich your day program by holding weekly pot-luck lunch get togethers – or a get together plus Bingo. Invite other DD folks in the area to join you for lunch and bring their support staff as guests. Service clubs and church groups typically come loaded with ideas for educating, employing, and entertaining your guys. For more enrichment, partner with local charities, sororities, and fraternities for outings to parks, nearby cities, and recreational centers. Properly nurtured, your unlicensed “not-a-group-home” can evolve into an attractive, vibrant, mutually supportive community. To spice things up, buy and rehab another house on the same street, and create a microboard to run it when you enter your dotage. You’re not licensed and not accepting Medicaid, so Olmstead restrictions don’t apply. For a shining KISS (Keep It Simple) example, see www.juniperhillfarms.org

Inspired by Cathy Boyle. At age 18, enroll your child on the waiting list for food stamps, a Section 8 rent voucher, and a Medicaid waiver. Use a portion of your child’s SSI/SSDI to offset your own income, which you invest until your child pops to the top of the wait list. Use your investment to make a down payment on a house ($400/month for a ten year wait = about $50K plus return on investment). Lease the house to a service provider who will bring in more ASD guys. Their rent pays the lease which pays the mortgage and most of the cost of services, so your monthly out-of-pocket costs are minimal. Because you’re the owner, you’re the boss, which is the way you want it for your child. For more ideas, go to http://www.autismhousingpathways.net/

Mark Olson. Self-sustainable campus communities such as the LTO Ventures model begin with a visionary and a vision. Articulate the vision in words and illustrations so that it can be communicated to families, adults with autism, and potential funders. Use those words and images to create a website, Facebook page, and a basic brochure and PowerPoint presentation. Evangelize the vision to anyone who will listen. As you gain commitment from others who share your vision, form a board of directors, incorporate as a non-profit in your state, and file IRS Form 1023 to get your 501(c)(3) tax exempt status. Partner with local businesses, create for-profit small businesses/micro-enterprises and provide real jobs for adults with autism and typical adults, all of which provide key revenue streams for self-sustainability. Identify and acquire a property. Fundraise relentlessly for the businesses and campus community, including through a offering. Develop the project in phases until complete. For a closer look at our model, go to www.ltoventures.org

Peg Pickering. Join Forces with other families. Work to “build a village”-- a network of homes for adults with autism, retirement homes for their parents, housing for non-disabled supportive individuals/families, ad college students as well as vocational and recreational opportunities for your adult child. Be sure to include lots of non-disabled housing to avoid Olmstead issues. If your child is already on an HCBS waiver, consider working with a local HCBS provider on a joint plan. HCBS provides supervision and transportation to work; residents pay rent and other expenses. Supervision can vary from 24/7 to “look in” contractors coupled with individual attendant care support. I’m pursuing these options in north Mississippi. Email me at for more information and ideas on how to do this in your area.

Cathy Cherry. Incredible models like those above and many more are developing across the country. As the mother of a transitioning youth on the spectrum and the principal of Purposeful Architecture and Purple Cherry Architects, I’m developing a modular solution in hopes of reducing the initial construction costs for some of these homes. To find solutions to solving the remaining financial needs, let’s work at a federal level to redefine permitted housing and allow housing selection by choice of the individual with special needs. Let’s incentivize families and developers to promote public-private partnerships to create more affordable housing options. Visit www.purplecherry.com/about

Dan Burns. Join us at AutismOne in Chicago on May 25 at 1:45 pm at the Residential Roundtable Discussion: Spectrum of Possibilities – A Discussion of Housing and Funding Options. We’ll brainstorm action that can be taken to initiate the changes needed to ensure the greater availability of successful housing options for the transitioning ASD population. Come learn about the spectrum of possibilities for independent living ASD adults, and share your story. For the latest on time and place, go to  the Autism One wesbite.

Dan E. Burns, Ph.D., is the father of a 25-year-old son on the autism spectrum and the author of Saving Ben: A Father’s Story of Autism Through his new dba, Appleseed Ventures, Dan empowers parents to organize communities where their adult ASD children and friends can live, work, play, and heal.

Posted by Age of Autism at April 19, 2013 at 5:45 AM in Dan Burns Permalink

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