By Dan E. Burns
Macbeth shall never vanquished be until
Great Birnam wood to high Dunsinane Hill
Shall come against him. – Witches prophecy, Macbeth, IV.i
I asked Ruth Christ Sullivan in a radio interview, “What would you do if you had another 30 years to live?” Ruth is the eighty-plus-year-old founder of the Individuals with Disabilities Education Act (IDEA), which guarantees a free and appropriate education for our disabled kids. She said, “I would go back to Washington. And I would make residential care for our adult children a Federal entitlement, not a Medicaid waiting room.”
Great idea; thank you, Ruth. Then she passed the torch: “You do it.”
So I journeyed to Washington, DC, carrying my torch through the Rayburn House Office Building, Dunsinane, bleak and regular as an egg carton. My plan was to roam the halls, top floor to bottom, knocking on Texas Representatives’ doors. I tried to imagine myself a prophet in the corridors of power, Jonah on mission in Nineveh; but the closed doors, identical as post office boxes, reminded me more of those kids’ books where you lift the flap to see the surprise behind it.
Here’s a Texas door. “Repent!” I cried, lifting the flap. The young staffer, who was alone and had not yet opened his mail, offered me a cup of coffee.
My message was this. “In Texas, we have a wave of disabled children on the autism spectrum graduating from high school and headed for the streets. Most of them will need support all their lives. It costs $100K to $160K per year to house a disabled adult in a state institution. It costs half that to support him in a traditional group home. Through our pilot project An Independent Me, a residential and vocational center, the Autism Trust USA is modeling how that support might work to lower the cost and improve the quality of life for these young adults in a community, village, or campus setting.”
“I’m listening,” said the note-jotting staffer.
“Let’s say we get the cost down to $60K per year,” I went on. “One-third of that comes from enterprise income, because with the support of Texas Department of Assistive and Rehabilitative Services we are putting these young adults to work in micro-enterprises, self-employment, and jobs. One third comes from private pay -- trust funds, insurance, family savings, and fundraising. The last third, that’s where we’re asking for help: permanent, reliable, Federal funding for long-term residential support. Give us the tools, and we will build these communities.”
The staffer put down his pencil and said, “You know, I can sell this idea to the boss as a deficit-reduction measure.” And I thought, Yes, Yes, Hallelujah Amen!
Picking up the pace, I roamed the corridors opening doors, thirty-six of them. I found four staffers willing to engage: two Democrats and two Republicans. That’s the start of a network that can grow to make An Independent Me and hundreds of communities like it a dream come true.
My sense is that Washington can be stirred, and we must do the stirring. Representative Dan Burton recently published a call to action, HERE, for Congressional hearings into the causes of autism (including mercury and vaccines), the inadequacy of the Federal government’s response to the autism epidemic, and the failure of the Vaccine Injury Compensation Program. “The autistic children of today,” he writes, “will be the autistic adults and autistic seniors of tomorrow. Our nation is ill prepared to deal with the complex challenges posed by a generation of autistic individuals. We need prominent and influential leaders to step forward and spark a national debate on autism.”
Do you see prominent and influential leaders stepping forward? I don’t. But we can lead the way. There are more House Office Buildings to traverse, Cannon and Longworth. You too can grasp Ruth Sullivan’s torch. Within these vast and lonely halls are pigeon holes, Congressional offices as plain as a small-town library. Private chamber in the back; government-issued reception desk on right and left. Behind the desks, staffers open the mail and read the news: Autism Is Stealing Our Kids. One in 88 twelve-year olds, on top of the uncounted younger children and grandchildren swelling the ranks.
The staffers know the numbers. The reps are waking up; some are primed to listen. They have kids and grandkids too.
Cornered in his fortress, twisted by greed and ambition, innocent blood on his hands, Macbeth fights on. But once the opposition rallies, there is no doubt how the play will end.
So I would encourage you to take your issue peacefully to Washington. Vaccines; environment; housing, safety, and a job for your child with ASD as he or she heads toward the high school exit. The time is now. Birnan wood is stirring. The doors of Dunsinane conceal a secret labyrinth of high-tension power lines extending into the vast and varied reaches of America herself.
And there’s nothing between you and your representative’s staffer except an unlocked door.
Dan E. Burns, Ph.D., is the father of a 24-year-old son on the autism spectrum and the author of the award-winning Saving Ben: A Father’s Story of Autism. Dr. Burns is a Contributing Editor for Age of Autism and is Adult Issues Liaison for AutismOne. He chairs The Autism Trust USA, (www.theautismtrustusa.org), a 501(c)3 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.