Autism Vox

Helping HANDS for Autism Act

by Kristina Chew, PhD on April 28th, 2008

Below is the press release about the new autism legislation that New Jersey Senator Robert Menendez unveiled this morning in Weehawken, in Hudson County in northern New Jersey. The legislation has three parts: The creation of “autism navigators” to help families “navigate” their way through services, treatment options, and much more; the development and implementation of autism training for first responders (police, fire departments, emergency medical technicians and other volunteers); the creation of an HUD Task Force to address the “serious lack of sufficient housing” for autistic adults. The legislation is specifically about services and community supports.

The need for housing for autistic adults is underscored in a story from KGW.com in Washington state. 41-year-old Ronny Johnson has autism and was until recently cared for by his now-65 year old father, Ron Johnson. Ronny Johnson only received a Core Waiver—a special state program that provides funds for high-level care of the type he requires—-after his father needed bypass surgery and was simply unable to take care of his disabled adult son any more (his wife, Carole, had died of cancer in 1994). The family had simply not known about such a waiver. Said another of Ron Johnson’s, Scott:

“Dad said it felt to him they had this special treasure they never told him about before, and they let him in on the secret only when he couldn’t take it any longer,” Scott said.

When, that is, it might be too late.

Here is Sen. Menendez’s autism legislation package:

AS AUTISM AWARENESS MONTH DRAWS TO CLOSE, SEN. MENENDEZ UNVEILS PLAN TO SUPPORT FAMILIES DEALING WITH AUTISM
-Three-part legislative package includes program to guide families seeking services and care, public awareness and housing for adults with autism
-New Jersey has highest rate of autism – 1 in 94 children

WASHINGTON – U.S. Senator Robert Menendez (D-NJ) unveiled new legislation today to support families dealing with autism spectrum disorders. Senator Menendez was joined by the groups Autism Speaks and the New Jersey Center for Outreach and Services for the Autism Community (COSAC), as well as local parents of autistic children, in announcing the plan, which comes as Autism Awareness Month draws to a close.

The Helping HANDS for Autism Act is a three-part legislative package that includes a program to guide families seeking services and care, increased public awareness and housing for adults with ASD. At 1 in 94 children diagnosed with ASD, New Jersey has the highest rate in the nation.

“As a society, we have to make sure that our autistic citizens and their families never feel abandoned or ignored by the community,” said Senator Menendez. “Families dealing with autism should have a helping hand if they want one, and that’s the purpose of these programs – so that we can be there for them. New Jersey families are touched by autism spectrum disorders more often than families anywhere else, so any nationwide autism program like this will end up helping our state tremendously.”

“Each of the three titles included in this legislation offers an important opportunity to address an area of concern for families affected by Autism,” said Elizabeth Emken, Vice President, Government Relations, Autism Speaks. “Autism Speaks thanks Senator Menendez for his leadership in helping families face the challenges associated with autism”.

“Nothing is more important to families then to know their government understands the issues they’re facing and to present solutions to aid them,” said Leslie Long, Director of Public Policy and Systems Advocacy COSAC. “Senator Menendez has empowered the autism community through his impactful legislation.”
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Helping HANDS for Autism Act of 2008
Sponsored by Senator Robert Menendez
An Act to Increase Housing, Awareness, and Navigation Demonstration Services (HANDS) for Individuals with Autism Spectrum Disorders

Title I: Autism Navigator
The Helping HANDS for Autism Act creates a grant program to provide autism navigator services to help families of individuals with autism spectrum disorders ‘navigate’ the complex, fragmented, and often confusing web of services and care that they need. Navigators will help guide families to current health, education, housing and social services that are often available to individuals in the autism spectrum. Too often families feel overwhelmed after diagnosis and often lost as to where to turn for help. For example, this program will help connect families to important treatment options soon after diagnosis, help families identify education options, help coordinate individuals’ care and community support. This program would provide a trained, knowledgeable hand to help families from the moment of diagnosis throughout their child’s development.

Title II: Autism Awareness
This bill provides for the development, demonstration and dissemination of a standard curriculum for the training of first responders (police, fire departments, emergency medical technicians and other volunteers) in assisting individuals with autism and other cognitive behavioral disabilities. It provides grants to states and local government to support training of first responders. People with developmental disabilities, including autism, have up to seven times more contact with law enforcement officers than others, according to an article in the F.B.I. Law Enforcement Bulletin in April 2001. That is why training is so important. Something as simple as first responders turning off flashing lights and sirens on a police car could make the difference between a peaceful or chaotic encounter.

Title III: Home of Their Own
This bill also addresses the serious lack of sufficient housing for adults with autism. It creates a HUD task force comprised of appropriate national and state autism advocacy groups, community-based organizations and parents who are charged with developing a housing demonstration grant program for adults with autism. The goal of the grant program is to provide individualized housing and services to adults with autism spectrum disorders.

Supported by:
Autism Speaks
New Jersey Center for Outreach and Services for the Autism Community (COSAC)
The Daniel Jordan Fiddle Foundation

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POSTED IN: Adulthood, Legal Issues, Living Arrangements, New Jersey, Parenting