SUBJECT:

PURPOSE:

The rapidly increasing number of children being diagnosed with a disorder on the autism spectrum is cause for public concern. Federal research on ASDs, a group of developmental disabilities defined by significant impairments in social interaction and communication and the presence of unusual behaviors and interests, demonstrates the growing prevalence of ASDs. Previous studies indicated that one in every 166 children was living with an ASD. A recent study by the Centers for Disease Control and Prevention suggests that the rate of ASDs among children is more prevalent than previously believed. According to the CDC study, nearly one in every 150 U.S. children has an autism spectrum disorder.

Since 1992, there has been a seven hundred percent increase in the number of children in New York State diagnosed with autism. With thousands of children needing special services and treatment, the State must ensure that long-term care and service plans are in place to assist these children throughout their lifespan. Currently, the demand for ASD services and treatment far exceeds the availability of services provided by the State's mental hygiene system. The need to review current resources and to evaluate the need for future services is critical in light of the alarming rates of ASD.

Families of autistic children frequently cite the need for better access to educational and health services, and the need for long-term assistance for individuals with more severe forms of ASD. For those children with ASD who are aging-out of the school setting, there is a vacuum of services and an increased need for government policies that will provide long-term care. Without early assessment and intervention, access to necessary developmental and medical services, and proper health care, children with ASD are being relegated to a lifetime of disability, unemployment and, for many, institutionalization. On human grounds, this is tragic. However, it is also bad economics. By focusing resources on planning and intensive early intervention services, more children with ASD would have the opportunity to learn skills that would assist them live healthy and productive lives.

The Committees would like to hear from families of children with ASD, treatment providers, health care experts and policy makers in order to gather information related to strategies and possible program changes necessary to adequately address this growing public concern.

Please see below for a list of subjects to which witnesses may direct their testimony.

Persons wishing to present pertinent testimony to the Committees at the above hearing should complete and return the reply form as soon as possible. It is important that the reply form be fully completed and returned so that persons may be notified in the event of emergency postponement or cancellation.

Oral testimony will be limited to 10 minutes in duration. In preparing the order of witnesses, the Committees will attempt to accommodate individual requests to speak at particular times in view of special circumstances. These requests should be made on the attached reply form or communicated to Committee staff as early as possible. In the absence of a request, witnesses will be scheduled in the order in which reply forms are postmarked.

Ten copies of any prepared testimony should be submitted at the hearing registration desk. The Committees would appreciate advance receipt of prepared statements.

In order to further publicize these hearings, please inform interested parties and organizations of the Committees' interest in hearing testimony from all sources.

In order to meet the needs of those who may have a disability, the Assembly, in accordance with its policy of non-discrimination on the basis of disability, as well as the 1990 Americans with Disabilities Act (ADA), has made its facilities and services available to all individuals with disabilities. For individuals with disabilities, accommodations will be provided, upon reasonable request, to afford such individuals access and admission to Assembly facilities and activities.

SELECTED ISSUES TO WHICH WITNESSES MAY DIRECT THEIR TESTIMONY:

1. To what factors is current research attributing the increased rates of ASD diagnosis?

2. What successful options are being used for early intervention and for treatment of children with ASD? What measures should the State consider to improve access to early intervention and treatment options?

3. What obstacles to treatment are families of children with ASD encountering?

4. What are state and local governmental entities doing to provide care, services and resources to autistic children and their families?

5. Are the current resources made available for autistic children and adults through state- operated agencies adequate to meet the current and future demand for care and services?

6. What services and programs has New York recently put in place to address the needs of the increasing number of New Yorkers diagnosed with ASD?

7. What types of multi-agency collaboration needs to take place to ensure that children with ASD are receiving coordinated services, efficient long-term planning, and the most current treatment resulting from medical breakthroughs?

8. Should New York establish an office or bureau focused on ASD as a means of improving the coordination of current research, health services and care options for those impacted by ASD?

9. How well are our educational institutions equipped to meet the needs of children with ASD?

PUBLIC HEARING REPLY FORM

Persons wishing to present testimony at the public hearing on the rising rate of autism in New York State are requested to complete this reply form as soon as possible and mail it to:

Amy Nickson
Legislative Analyst
Assembly Committee on Mental Health, Mental Retardation and Developmental Disabilities
Room 522 - Capitol
Albany, New York 12248
Email: nicksoa@assembly.state.ny.us
Phone: (518) 455-4371
Fax: (518) 455-4693

I will address my remarks to the following subjects:

I will require assistance and/or handicapped accessibility information. Please specify the type of assistance required: