NYS Albany Hearing 3/8/2007

[Guest guest]

Below is the testimony of Alison Tepper Singer before The Assembly Standing Committee On Mental Health, Mental Retardation and Development Disabilities and the Senate Standing Committee On Mental Health And Developmental Disabilities on March 8, 2007.

I have seen the many comments related thereto and apparently there seems to be a disconnect on what was said.

On a related note I can add that the school Alison's daughter attends is on the NYS list of approved private schools. Consequently, it is a district paid programs for children who need an out of district placement as a result of the CSE's determination that the needs of the child cannot be served in the local district or BOCES program.

MARCH 8, 2007

TESTIMONY OF ALISON TEPPER SINGER

SENIOR VICE PRESIDENT

COMMUNICATIONS AND STRATEGY

AUTISM SPEAKS

BEFORE

THE ASSEMBLY STANDING COMMITTEE ON MENTAL HEALTH, MENTAL RETARDATION AND DEVELOPMENT DISABILITIES

AND

THE SENATE STANDING COMMITTEE ON MENTAL HEALTH AND DEVELOPMENTAL DISABILITIES

MARCH 8, 2007

Chairman and Chairman Morahan, thank you for recognizing me and for holding this very important hearing today.

My name is Alison Singer. I am a resident of Westchester County and the Senior Vice President for Communications and Strategy at Autism Speaks. Autism Speaks, the largest single organization devoted to autism in the country, was founded in February 2005 by Bob and Suzanne of New York City who have a grandson affected by this disorder. Over the last two years, we have joined forces with the National Alliance for Autism Research and, very recently, Cure Autism Now. I am here on behalf of tens of thousands of parents and their children who belong to our organization.

I am also here on behalf of Jodie Singer, my nine year-old daughter, who suffers from autism, and Tepper, my 42 year old brother with autism. Jodie truly is the sunshine in my life. She was diagnosed at age 2 ½ and received early intervention services through the New York State Department of Health. She attended a special education preschool and then received special education services in public school. However, her needs simply could not be met by the public school system and she is currently enrolled in a private school for children with autism, where she is making good progress, because there is staff trained to meet her unique learning needs. My brother , a former victim of Willowbrook, is currently living in a group home in Rockland County, where he participates in a day program delivering meals on wheels to home-bound citizens. In the last few years he has learned to swim and became toilet trained in his thirties, proving that it is never too late to offer services to persons with autism across their lifespan.

As you know, Chairmen, my family is not alone in the struggle with autism spectrum disorder. Every twenty minutes, another child is diagnosed. According to the Centers for Disease Control and Protection, 1 in 150 children are diagnosed with autism. That means that in every grade in every public school in New York there is likely to be at least one child diagnosed with autism.

Because of this epidemic, Autism Speaks pushed very hard for passage of the Federal Combating Autism Act, which the President signed into law in December. The CAA authorizes nearly one billion dollars to fund research at the CDC, the Health Resources and Services Administration, and the National Institutes of Health into the causes of autism, including environmental factors, and evidence based treatments for autism. Currently, there are no effective means to prevent autism, no fully effective evidence based treatments except Applied Behavior Analysis (ABA), and no cure. It is our fervent hope that the CAA will help change that, and we urge the New York legislature to act on a companion bill. Given the prevalence of autism spectrum disorders in the state, there is no reason that New York should not be a research leader and respond to the huge demand for evidence-based information regarding the education of individuals with autism. We are in desperate need of evidence-based educational treatments. What we have now are collections of consensus-based best practices. But without a research foundation, "best practices" often amount to an exchange of testimonials and fads. With good marketing strategies, any method or approach can become the next new hot therapy. School officials charged with the appropriation of limited resources and expending public funds need to know what interventions are likely to work with students with specific profiles. The opportunists that are looking for a quick buck abound and are feeding on these families' "hopes" for quick answers or cures.

The No Child Left Behind Act and other such legislation require schools to attend to and sufficiently fund programs that will promote academic skills. On the other hand, programs and opportunities that allow for the development of life skills are being reduced. Traditional "shop" programs seen at the high school level, for example, have become "technologized" to the point that an understanding of computer technology and physics is required. Hence, as school districts ratchet up their education programs, young adults with autism and other related disabilities are being further disadvantaged.

Research based programs are needed to help guide school districts in program development and implementation, as well as in program design. Funding needs to be earmarked to help establish centers that will develop basic competencies in those individuals for whom college is not in the future but who have the capability to be functional members in our communities. Such centers need to include career counselors and placement services. Finally, with the number of children with autism rising and more and more of those children being educated in mainstream public school classes, teacher training for all mainstream teachers regarding how to work appropriately with students with autism is necessary.

But funding educational research is just a first step. Please allow me to suggest several other areas that your committees may want to consider:

· First, families that are affected by autism need insurance coverage. By and large, insurance companies do not reimburse parents for the diagnosis, treatment, and services associated with spectrum disorders. At Autism Speaks, we do not believe in competition in human misery. But while health plans cover the broken legs and broken arms of healthy kids, they do not cover the costs of treating a child with autism. That's just plain wrong. You have the opportunity to change that by mandating insurance coverage for evidence based treatments of autism.

· Second, New York should become a leader in providing services to families who live with autism. One of Autism Speaks' highest priorities in Washington this year will be a follow-on to the Combating Autism Act in the form of a state grant program to fund services and treatment programs. We urge you to get ahead of Congress and pass legislation that will allocate resources to ensure that people suffering from ASD can be meaningful members of their communities.

· Third, although not necessarily in the purview of your committees, we strongly recommend revisions to the tax code that would benefit families with autistic children. Mothers and fathers will not be around forever, and without a cure, autism will stay with someone for life. We can use the tax laws to fund pre-tax accounts that allow parents to provide for their kids, just as mothers and fathers can save for college educations.

· Finally, there is great concern among families of children with autism that New York State Ed's interpretation of the Individuals with Disabilities Educational Improvement Act (IDEIA) will mean that children whose school districts cannot provide appropriate placements within the district and who have to attend school outside of their home district will no longer be the responsibility of the school district in which their parents reside and pay taxes, but rather the school district in which the new school the child attends is physically located. For example, if I live in Scarsdale and my daughter attends an autism program at a school in Eastchester, responsibility for reviewing her annual progress and evaluating her ongoing needs is transferred to Eastchester, which may or may not decide that Eastchester is even appropriate. While I understand that this provision was implemented as part of the Child Find program, it will have devastating consequences for families and children, and will result in decreased accountability for the education of the most fragile of children. It also places an undue burden on the districts that have stepped up and created appropriate programs for children with autism. I urge you to recommend that State Education not implement this change.

Chairman and Chairman Morahan, Members of both Committees, thank you again for the opportunity to testify today. All of us at Autism Speaks look forward to working with you on responding to the urgent health crisis in autism. We stand ready to help you in all of your efforts. Thank you.