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Serving and Supporting the Missing Millions – A Moral and Economic Imperative

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Submitted by JaLynn Prince, President and Co-Founder of Madison House Autism for the April 8, 2014 IACC Full Committee Meeting

Madison House Autism Foundation is a public 501 c 3 non-profit, national organization working to eliminate barriers and increase opportunities for the rapidly growing numbers of adults with autism. Its immediate priority is to address the near total lack of flexible housing options for adults with autism. Its programs and philosophy are based on the belief that sustainable, replicable solutions must engage all sectors including public and private sectors, non-profits, families and advocates. For more information, visit www.madisonhouseautism.org.

IACC is making important and promising strides addressing issues in autism and adults. But a silent crisis still exists, and it is growing. I refer to the growing number of undiagnosed and underserved adults with autism. They are largely invisible, and they and their families are in crisis. We have both a moral and an economic imperative to respond.

With our new prevalence rates looking at children age 8, we know for a certainty that most of those 8-year-olds will live the vast majority of their lives as adults and that they are likely to have little or no services.
We know that in 13 years, a blink of an eye, these beautiful children will disappear from view and will join an existing population of uncounted numbers, who are already adults.

We know that among these thousands, if not millions, of individuals, there are
Those who have not been able to qualify for adult services,
Those who have limited services,
Those who are living with aging parents,
Those who are on the streets, and
Those who have taken up residency in our penal institutions.

This invisible group is called, “Adults on the Autism Spectrum.”

We cannot afford to ignore these individuals, or families, either morally or for economic reasons.

Let me share three examples:

This past week, a mother sat across from me at Madison House Autism Foundation. She is in her mid-70’s. Her son, now 30, was not diagnosed with autism until the age of 26. Because of a later diagnosis, he has been unable to secure any services. Unless he becomes violent and is a threat to his parents or has an altercation with the police, they will not be able to get much-needed help in the foreseeable future. His elderly mother has just one resource – a few respite hours, and they quickly run out.

A second mother came in to talk about her son who is 28. The parents served our nation in the diplomatic core, transferring from country-to-country throughout their careers. Because they didn’t live in a state and were abroad, their son has no funded services. He is living at home, and the mother is her son’s 24/7 caregiver, teacher, health care provider, and advocate. She is without help and exhausted. The father has retired from working in our embassies but is now taking jobs to enable them to fund their son’s care and future.

My own son, Madison, represents a typical story of a young adult aging out of services. When he graduated 20 months ago, the student body gave him a standing ovation. He had a transition plan in place. He was to be in a placement in a yearlong program that would be the bridge to a longer-term program. But the interim program did not have in place staff that knew autism, though we were assured they did. Although he was promised a position for the following year, the ball was dropped, and then his first caseworker moved, the second one quit the agency. The next was fired. Another resigned. The next was reassigned. He now has finally has landed in the lap of the sixth caseworker – all since last May. The program he was to enter last fall denied him, I am sure largely, because of lack of follow through. My once happy, productive young man –- was in crisis for 20 months — needing medical intervention, suffering from depression and low self-esteem, and experienced a complete lack of community with peers. With no remedy in sight, recently we put together a private program for him, and he is starting to come back to us. The system designed to help him has actually hurt him.

If this can happen to me, a professional in the autism arena, what happens when parents have no resources, are single parents, have other children, or which is often the case, and have multiple children on the spectrum? And what is happening in our own neighborhoods to families who are silently, with dignity, diligently trying to cope day-to-day with adult children in their homes who are becoming increasingly more depressed, agitated, aggressive, and overweight. And may I add lonely. The strongest among us would reach a breaking point.

With all of the progress with children, little is being done for the invisible millions of adults and families dealing with particular types of autism – a true public health crisis.

Many decisions that have been made on behalf of those with disabilities are placing large portions of our population at risk — physically, emotionally, economically and socially.
All of us need to roll up our sleeves and take a look at the big picture: What is being done that needs correcting, and what needs to be done that is NOT being done? We need a more comprehensive approach looking at things between each of your agencies, with none of us placing ourselves in a position of defending policies that don’t work in harmony with creating better, person-entered, positive futures. We need to innovate to have public-private partnerships to address the issues before us. Madison House Autism Foundation and thousands of parents, and individuals stand ready to help find comprehensive solutions. We need your unwavering leadership. And we need to work on behalf of those on the spectrum and beyond our own careers. We can retire from our jobs, but these individuals will be living with autism for the rest of their lives.

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1 Comment

  1. Holly Bortfeld
    Holly Bortfeld04-09-2014

    Hi, we were at IACC yesterday too (I testified third) and I really wanted to thank you both for your talks. We are creating a farm-residence for my son and other young men like him here in PA and I was hoping to connect with you ladies but we had to leave to get home. Please add me to your email list and keep up the good work!

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