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

Tombstone-your-name-here


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 entrepreneurial 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 venture philanthropy 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 autismadvocate@yahoo.com 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.

Comments

Gina Krobath

I am trying to get long term care for my brother. I was so excited when I won base funding after Kennys medicaid was cancelled. Sad part is he is now in "Delta House" living with 2 Roomates. Now he doesn't have a nurse so everytime he pulls out his feeding tube it's an ER trip. He's lived the 9 days and pulled out his G-tube 7 times. So our dad passed away and Kenny's survivor benefits made his "income" too high to qualify for medicaid. I fought to get base funding. Melmark was so excited for him to get base funding. They were going to move him into the base funding house. All of the houses are separated due to insurance coverage. When the county realized it was $880/day and started to get the bill for base funding. They moved him to delta house. It's so frustrating.. When someone is saying woo hoo it's for their own financial needs. My poor brother should be back at Melmark where he had all of the care he needed. Now he's in the hospital and had a short procedure to try to keep the feeding tube in. When someone in an RTF or the county says woo hoo. That just means they saved a little money. You never hear my mom say woo hoo.. Kenny is going to be 21 at the end of may. Ill keep fighting PA until they get it right, they are trying but it's not enough. We need to protect the 19 and 20 year olds. There really is nothing for them... I know the long term care fight all too well.

Catherine Boyle

A quick correction: "Use a portion of your child’s SSI/SSDI to offset your own income". You won't be able to use SSI for this, as you have to account for how the money is spent for the child. What you can do is, in a state in which there is Adult Family Care, invest the tax free stipend you are paid as the caregiver.

Catherine Boyle

Birgit, what a terrible outcome. It does point out the importance of everyone involved being licensed, with clear protocols for what to do in what instances, including a methodology for firing the care agency. It's just a fact of life that anyone we hire as a caregiver when our child is in his/her 20s will probably not be there when our child is his 50s. Training is crucial.

I am so sorry.

Cathy Boyle
Autism Housing Pathways

To Martha Moyer

Dear Martha Moyer,

God bless you and your son. My daughter is now 20 and is the beginning of the epidemic numbers to come. With so many on the horizon, there is a real concern for funding. Meg is completely nonverbal with very limited communication. Equally concerning are her numerous medical issues that cause most of the behaviors related to her "autism."

Please stay tuned here about adult housing and also about the medical issues that may help you son as well. Bipolar, OCD and even Autism may be behavioral diagnoses for extreme medical and immune issues for our children. Hope to see you post more.

Warm Regards, Teresa

jean

Thank you so very much Dan for this very valuable, needed and deeply appreciated guidance. I appreciate you, your son and his mom from afar.

Angus Files

Song for the kids ..I think..

Eurythmics - I've Got A Life

http://www.youtube.com/watch?v=zSTXNOFjAQ4

Angus

Martha Moyer

It is indeed a challenge when you have an older person with autism to take care of. My son is now age 39. Over the years he has been through all sorts of traumatic situations including institutional neglect. Seth is pretty severe with limited communication skills, moderate autism, bipolar, OCD, and so he needs someone to order his life. He can't do it alone. I am nearly age 75 and my husband deceased.

I designed the first one person support system in Texas called a microboard. Seth has a wrap around system...a board that meets and monitors care; a medicaid waiver program. He lives in his own apartment with live in caregiver and has a dayworker to take him into the community. Has section 8 housing. There are few work options in San Antonio. I keep looking but when an individual can't communicate very well then it makes issues in finding jobs. The rehab system won't work with people like him. In Tx. you have to be able to transition to natural supports. Seth can't transition. He needs one on one support. I have done all I can and can never retire. Seth is my fulltime job, unfortunately. I have become a Home and Community Based Services Medicaid waiver provider for just my son.

Angus Files

Good article its the end my friends but not how they should have been

all the wasted life..

Angus

John Stone

Birgit

All so sad, so completely unfair.

John

Birgit Calhoun

What makes this worse is the fact that at the time when we had to find a place for Erik the State of California did not give us parents money for the care we gave, i.e. we the parents were not allowed to be caregivers. My husband went on disability around that time, and I had to go to work. The only way we could afford living where we were was to find a place for Erik outside our home. I would have preferred being the caregiver. That option was not open to us. California law has changed; but it isn't any easier finding a good caregiver because of all those professionals out there.

John Stone

Birgit

What a tragic, appalling story. This is what haunts so many of us in advance. Everyone's heart will go out to you.

John

Birgit Calhoun

My son Erik died before we did. He suffered a lot; and for us it was the end of a long struggle. We did buy a house. A care-giver couple moved in who brought in as many as 6 mentally handicapped persons. That went well until after about 25 years of caring the husband died. The death of the husband was also the beginning of the end for Erik. The wife did not have a license to run the home. The person who took over received Erik's money; but the wife who stayed in the home to take care of Erik only received a pittance. She barely survived on the allowance they gave her. We complained; but it didn't do what we had hoped. A bit more than five years ago, the caregiver couldn't take it any longer. She left the house without telling anybody.

The new caregivers meant well; they were professionals, but they didn't know what Erik needed. He got worse. There was just no love with all the different people going in and out to essentially babysit. Erik died about two years later.

Teresa Conrick

Inspiring to read! Thank you and see you at A1!

Twyla

Nooooooooooo! We're not gonna die, not everrrr!

John Stone

Dan,

What a tireless fighter you are, but also even better - what a practical man!

You are an inspiration.

John

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