Help Where It's Needed: NJ Autism Bill

Assistance with figuring out what to do directly after a child receives an autism spectrum diagnosis---more understanding about autism among first responders like policemen and firemen---more housing for adults on the spectrum: Yesterday, New Jersey Senator Robert Menendez re-introduced the Helping HANDS with Autism Act, which addresses these three needs. A similar bill was introduced last year, the Bergen Record notes. Senator Menendez is now "more optimistic the measure could be included in a broader health care reform measure Congress is drafting."

There've been a number of autism bills introduced in state legislatures throughout the US; y can read about them in a database of autism legislation via the National Conference of State Legislatures site. Many of the bills include calls for insurance companies to cover treatment, usually in the form of ABA. I think it's important the proposed NJ legislation is specifically about services, training, and education, and that it addresses the needs of both young children and their families and of adults. At this point in taking care of Charlie---he'll be 12 in May---we don't feel so much that we need an "autism navigator" to figure out what services Charlie needs and how to access them. (Which is not to say, we don't often feel quite uncertain about what to do next!) Autism is lifelong and one of the (many) pressing concerns for individuals with autism in NJ (and elsewhere....) is housing: Over 8000 developmentally disabled adults in NJ have been on a waiting list for housing for over a decade and I suspect that list is growing, and very fast.

Go here to read the original text of the Helping HANDS for Autism Act. A press release about the legislation can be read by clicking "read more."

IN PREPARATION FOR AUTISM AWARENESS MONTH, MENENDEZ REINTRODUCES LEGISLATION TO SUPPORT FAMILIES DEALING WITH AUTISM
At 1 in 94 children, New Jersey has highest incidence of autism

WASHINGTON – With Autism Awareness Month beginning next week, U.S. Senator Robert Menendez (D-NJ) today reintroduced his legislation that would support families dealing with Autism Spectrum Disorders. The Helping HANDS for Autism Act, which is hailed by autism advocacy organizations, is a three-part legislative package that includes a program to guide families seeking services and care, increased awareness among first responders and housing for adults with ASD. At 1 in 94 children diagnosed with ASD, New Jersey has the highest rate in the nation.

“If a family that has been touched by autism seeks support or guidance, it should be readily available,” said Menendez. “This legislation is meant to strengthen the Autism Spectrum Disorder support structure, which can make a real difference in the lives of autistic citizens and their families. I will work to make sure that this issue and these proposals are in the mix as we tackle health care reform.”

"Nothing is more important to families touched by autism than timely access to the information and services they need to meet their daily challenges,” said Leslie Long, Director of Public Policy for Autism New Jersey. “This legislation directly responds to the needs of the autism community and will make a tangible difference in people's lives."

“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 of Government Relations for Autism Speaks. “Autism Speaks thanks Senator Menendez for his leadership in helping families face the challenges associated with autism.”

“Senator Menendez has taken the time to listen to the concerns of individuals with Autism and their families and the need to offer those affected by this lifelong challenge a helping hand in attaining the support, resources and opportunities to live as independently as possible in the community,” said Linda Walder Fiddle, Executive Director of The Daniel Jordan Fiddle Foundation. “The Daniel Jordan Fiddle Foundation fully endorses the Helping Hands for Autism Act, and looks forward to working with Senator Menendez to assure the fulfillment of its goals.”

“The National Autism Center recognizes the importance of the Helping HANDS for Autism Act and its potential positive impact on families,” said Dr. Susan M. Wilczynski, Executive Director of the National Autism Center. “This comprehensive autism legislation encourages enhanced access to autism services, a more prepared community of first responders, and increased independence through housing opportunities for adults -- all vital to the health and well being of individuals with Autism Spectrum Disorders.

Background of legislation:

Helping HANDS for Autism Act of 2009
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 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.

Supporters
Autism Speaks
Autism New Jersey
The Daniel Jordan Fiddle Foundation
National Autism Center
Autism Society of America
Professional Firefighter Association of New Jersey (PFANJ)

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Afshin Mohamadi
Press Secretary
Sen. Robert Menendez (D-NJ)
202-224-4744
For the latest news from Sen. Menendez, including video and audio updates, visit http://menendez.senate.gov/