MHAF Statement for Nov 29th Congressional Hearing on Autism

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Statement for the Record

Madison House Autism Foundation

Submitted by

JaLynn Prince

Cofounder and President

 

to the

Committee on Oversight and Government Reform

United States House of Representatives

 

Hearing of 29 November 2012

 “1 in 88 children: A Look into the Federal Response to Rising Rates of Autism”

 

 

Mr. Chairman and Members of the Committee:

 

On behalf of Madison House Autism Foundation, I want to thank you for holding this important hearing of the House Committee on Government Oversight and Reform to evaluate how funding for autism research has translated into research results. We are grateful for the opportunity to provide this statement for the record of this hearing to the Committee.

 

I am reminded of the story of the blind men attempting to understand an elephant, but each of them touched and felt and different part of the animal.  One, who fell against the side of the animal, pronounced it to be like a wall.  The one who touched its tusk, said it was like a spear; the one who felt its trunk said it was like a snake; the one who grasped it tail said it was like a rope; and so on.  Likewise, in approaching autism, there is a wide range of different issues and problems that result from this condition.  This variety was evident in the different ways in which autism was discussed in the hearing and in the strategies for dealing with this condition.

 

As Chairman Issa noted in his opening statement, in the past twelve years the rate of Autism Spectrum Disorders (ASD) has doubled from 1 in 150 to the current rate of 1 in 88.  In an effort to deal with this exponential increase, the Combating Autism Act (Public Law 109-416 [2006]; Reauthorized Public Law 112-32 [2012]) sought to bring together ASD professionals, researchers, self advocates, and government agencies to help guide research into autism disorders.  We wholeheartedly welcome this positive effort to increase significantly the funding for research and to provide better focus and guidance to the enhanced research effort.

 

At the same time, however, the increased research funding and the better focus is geared towards finding a cure for the condition, but the legislation has not given attention to those who are living with autism.  It is this serious and growing problem of dealing with this developmental condition throughout a lifetime that is the focus of my comments.

 

The economic costs are staggering and the social impact of not responding to life-span issues is devastating.  Echoing one of the autistic panelists in this hearing, this is not a public health crisis; it is a public service crisis that will affect every autistic adult for decades to come. On a national level, we are on the verge of “going off a services cliff.”  Only 2% of the total funding for autism research deals with lifespan issues and with preparing to deal with an growing number of autistic adults.

 

Every 12 minutes a child is born who will be diagnosed with autism. These children have the same chance as you and I – or any other adult in the United States – to live an average lifespan of 80 years, the same lifespan as any other adult in the United States.  In the next decade alone,500,000 of these young, autistic adults will turn 21 – the age at which federally mandated services are no longer provided.  Those beyond age 21 today continue to face enormous challenges.

 

There is currently a lack of discussion and no real sense of urgency about how to deal with growing numbers of Autistic individuals who are “aging out” of school-based programs.  All funded services and supports which are established throughout a student’s school career is dropped once he or she turns 21 and is no longer eligible for school-based programs.  During the next 2/3 of their lifetime, these individuals do not have access to supportive services.  It is estimated that 90% of areas in this the country have waiting lists for these essential support services.  The Inter Agency Coordinating Committee reported that “adults with ASD struggle with ongoing and mostly unmet needs”

 

These are the most urgent needs facing adults with autism:

 

  • Housing.  Waiting lists for housing are decades long – according to one study, only 2,000 housing units in the country are dedicated for adults with autism.   Another study reports that supportive housing for individuals with autism is available for less than 13% of the demand.  Easter Seals Disability Services reported that 71% of parents of Autistic children are not sure where their child will live once the parents pass away.

 

  • Employment.  Unemployment rates for adults on the spectrum, many of whom have exceptional gifts to contribute, exceed 80%.

 

  • Social Interaction and Continuing Education.  Opportunities for social interaction and ongoing education are nearly non-existent after age 21.

 

Professionals, caregivers, housing agencies, first-responders, legislators and policy makers need to better address the issues of this fast-growing population of Autistic adults. Families across the nation face unimaginable anguish knowing their adult child’s chance of receiving assistance, stability, and understanding as they age is extremely rare.

 

Madison House Autism Foundation is dedicated to creating awareness of the lifespan challenges facing autistic adults and their families; and to finding, developing, and promoting solutions that allow adults with autism to make choices, live as independently as possible, hold jobs, feel connected to their communities and become participating members of our society.

 

Currently, Madison House Autism Foundation (MAHF) is focusing on the following priorities:

 

  • Research on Issues of Adults Living with Autism: MHAF is partnering with Johns Hopkins University on a multi-disciplinary study of adults with autism.  Initial results will provide a blueprint for policy, partnership, and action.

 

  • Special Needs Trust Legislation: MHAF and industry partners are designing trust vehicles and advocating for legislation that would create a 529 plan for autistic children – a legislative solution that would encourage parents who are able to put aside funds to provide for financial maintenance of adult children with autism.  This will help families create funding streams that will make possible for-profit and non-profit housing for autistic adults.

 

  • For-profit and Non-profit Housing Model:  MHAF is collaborating with private sector partners to create viable housing models through shared government, family, and for-profit investment. Through projects such as Indigo Trails in Arizona, we can develop and replicate quality of life solutions that share the economic and societal burdens.

 

  • Promoting Innovation: MHAF is launching the first interactive national autism housing network that promotes promising concepts; engages and connects the community of providers, advocates, and individual supporters; and creates opportunities to discover, support, and promote shared approaches to a national health crisis. We also organize housing think tanks to advance innovation and supportive national policy.

 

  • Awareness and Acceptance: MHAF Arts for autism events create spaces for autistic adults to showcase their artistic talents, gain opportunities to realize self-expression, and raise understanding and awareness. Concerts and exhibits benefit autistics, artists, and audiences of diverse backgrounds.

 

Mr. Chairman, we see many challenges ahead, but more importantly we see opportunities for American ingenuity and innovation. Working together, we can find ways to allow the millions of people with autism to live as independently and productively as possible, contributing positively to economic growth, community development, and medical understanding. It is important that we given greater attention to lifespan issues for those on the spectrum and the dissemination of solutions to mitigate this national crisis–our country cannot afford to neglect research in adult issues on autism.

 

Thank you for this opportunity to call attention to the concerns that we are seeking to address at the Madison House Autism Foundation.  Autism affects individuals and their families and it cuts across social, cultural, economic and other boundaries.  It is imperative that we work to deal with these serious and growing problems.

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