This guest blog post kicks off a new series written by my friend and colleague – Dr. Dan E. Burns. Dan’s series will address many of the challenges faced by families with adult children living with Autism Spectrum Disorders. In this first post, Dan breaks down and describes many of the ways families can go about “Funding Autism for Life” with pertinent suggestions and ideas for parents with younger children as well. I know you’re going to learn a lot and enjoy Dan’s guest series. Please help me welcome Dan!

Funding Autism for Life: A Map to Treasure Island

By Dan E. Burns

“It’s autism. There is no medical treatment. Let the schools take care of him and save your money for his institutionalization when he turns 21.” Those were the final, chilling words Ben’s pediatric neurologist spoke to me on Pearl Harbor Day, December 7, 1990. Ben was three years, four months old.

I declared war. With an ABA manual in one hand and biomedical primer in the other, I fought for Ben’s future. But as the months and years went by and the hope for a full recovery dimmed, I had to admit that his pediatrician was right. Where would Ben live, work, and find friends after the school bus stopped coming? And given the high cost of therapies, plus the asteroid crater in my own career when I cut back work to jump start his therapy, how could I possibly save enough money to place him in a “home” and pay his bills for life?

There were four options. First, Ben could live out his days in one of the Texas state schools. These cavernous “State Supported Living Centers” are the disintegrating detritus of the insane asylums of yore. Called “prisons for the developmentally disabled,” they are nonetheless a welcome choice for some families whose adult children need 24/7 care. And they are free. Second, Ben could live in a group home, assuming I could find a good one that would take him. If he qualified for a “Medicaid Waiver” (more about that later), the state would cover most of the cost – at a list price of around $60K per year or more. Third, Ben could get on the waiting list for a privately-funded planned community or farmstead, a utopian “private pay” solution that would cost about the same as an upscale college, most of it out of my own pocket, for life. Not a likely option for me. Fourth and finally, like most young ASD adults, Ben could continue to live at home. In a recent study, “Living with Autism,” Easter Seals found that more than 80 percent of individuals with autism between the ages of 19 and 30 continue to live with their families. It’s the most convenient and least costly option.

Where does the money come from? Typically, from Social Security (SSI & SSDI); from family savings and special needs trust funds; and from the cog-wheeled Medicaid Waiver program, a state and federal superfund not to be confused with Medicaid health insurance. Here’s what you need to know about each of these.

Social Security (SSI & SSDI): For Social Security purposes, when your disabled child reaches age 18, he or she is an adult and is no longer on your ticket. So unless he owns property or has a great job, SSI (Supplemental Security Income) sends him a monthly check for $675. And he gets Medicaid health insurance. Next step: if and when you or your spouse retire and start collecting Social Security, your adult child becomes eligible for SSDI – Social Security Disability Insurance – which replaces SSI and may give him a modest raise. SSDI awards 50% of your payment to the child when you retire and 75% when you die. For some people this can be a big increase. Not nearly enough to live on, but a whole lot better than nothing. See www.ssa.gov/disability for details.

Family Savings and Trust Funds: Let’s say SSI/SSDI covers the rent. Where will your adult child get the extra funds for food, utilities, transportation, clothes, movies, and vacations? Possibly from charity, but unless he or she earns a significant income, chances are you will need to contribute most of the gap funding out of your own pocket. How? At age 26 (used to be 22) your child drops off your private pay policy. But if he qualifies for government-funded health care, that could save you hundreds of dollars a month toward his living expenses. Or you may want to use the freed-up income to create an endowment, securing your ASD child’s future after you leave the planet. You can do this with a last will and testament that automatically creates a third-party, special-needs trust (also called a supplemental needs trust) plus a life insurance policy that funds it.

The Medicaid Waiver: Oddly named and different in each state, this is the disability superfund – Treasure Island if your child is eligible for Medicaid. We’re talking about cash money as one of the options here, so stick with me through the Rube Goldberg-like maze of moving parts and murky acronyms that follows. “Waiver” means you sign a paper waiving your child’s right to live free in a medical facility, state school, or ICF/MR group home. Instead, you may elect to become your own child’s foster parent and get a monthly check courtesy of the state and federal governments. If you had the opportunity to cut through the murk and put your child on a state Medicaid Waiver “interest list” in Texas before he was 10 years old, his name should come up for Home and Community Services (HCS); its sister program, Texas Home Living (TxHmL); or it’s cousin Community Living And Support Services (CLASS) at about age 21.

How do these programs work? In Texas, they are administered by the Department of Aging and Disability Services (DADS), which contracts with privately-owned “service providers” – hundreds of them across the state – to do some of the government paperwork. For a mild-to-moderate “level of need” (disability), the program kicks in around $1500/month. That’s like winning the Texas Lottery. There are important extra benefits as well, including “dayhab,” which is a kind of sheltered workshop; respite, which is like babysitting while you take a break, and speech therapy. But be advised: your child is not automatically placed on the interest list. See www.dads.state.tx.us to apply for a slot. Unless he’s already in a state school, there’s an eight-to-ten-year wait, first come first served. Good news: the state has recently added about 5000 Texas Home Living slots, so the wait could shrink. Contact DADS annually on your child’s birthday to update his spot on the list.

Pitfalls on the path are troubling. The Medicaid Waiver is a favor, not a right, so it’s a political football and subject to state and federal whims. What if your child has severe behavior problems or requires 24/7 supervision or medical care? Or if his IQ is too high – 75 or above – in Texas? What if Congress severely restricts Medicaid or scraps it altogether? What if the Texas Governor attempts to privatize the program and sends the matching federal Medicaid check back to Washington, as he has proposed? These questions answer themselves. You lose.

Among the risks, there are some certainties. Here are three steps you can take right now:
1. Get on the Texas DADS “interest list” (waiting list) at www.dads.state.tx.us It’s never too late.
2. Invest in a life insurance policy for yourself and your partner or spouse, one that creates a special needs trust fund on your death. Get a good lawyer and be careful how you set it up; a botched trust fund can kick Medicaid to the curb.
3. Work the political process to make Medicaid eligibility a federal entitlement like Social Security or IDEA – the Individuals with Disabilities Education Act. The original IDEA Act of 1975, recently improved, made a huge difference in our children’s lives. It mandated a free and appropriate education for developmentally disabled children until they reach adulthood. But what about the other 75% of our disabled children’s lives? Not covered.

Where do we go from here? In her paper on “The National Crisis in Adult Services for Individuals with Autism,” disability advocate Ruth Sullivan, who nursed the original IDEA act through Congress, lists the three options available to us as a society: Do what’s right (provide appropriate services). Do as little as we can get by with (provide custodial care). Do what Hitler did (dig a big ditch). For parents of children on the ASD spectrum, the big ditch is not an option.

We can do this. Our challenges are significant, but we are not without resources. Join the Canary Party at www.CanaryParty.org. Let’s get a national version of California’s Lanterman Act and make funding for our children’s future a right, not a favor. For more ideas, contact us at theautismtrustusa@gmail.com. Together we can create a better future for our kids.

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Dan E. Burns, Ph.D., is the father of a 24-year-old son on the autism spectrum and the author of Saving Ben: A Father’s Story of Autism. Dr. Burns is Adult Issues Liaison for AutismOne. He chairs The Autism Trust USA, a 501(c) charity focused on empowering parents to organize communities where their ASD children and others can live and work, enjoy life, continue to heal, and give back to society.