Reflections on Ten Years of Legislative Advocacy In Massachusetts

By Rep. Barbara A. L’Italien, Andover, 18th Essex

Ten years ago, upon receiving a diagnosis of Asperger’s syndrome for my then 5 year old son, I set out to find out as much as possible about the diagnosis on the web and through Gail Kastorf at the Autism Support Center (ASC) in Danvers. Having been a social worker in my prior professional life, I decided that I would put those skills to work to figure out the best path for my son. In the process, I began a journey of advocacy for others as well.

After attending a support group for children with autism it became clear to me that my son’s communication difficulties, though more subtle, were every bit as real as those of nonverbal children. I realized that parents of children with AS needed their own group, where they could address their children’s unique needs without having to feel guilty or to “compete” with parents of nonverbal autistic children. With Gail Kastorf from ASC help and support, I established the first AS support group north of Boston, meeting at Merrimack College in North Andover and facilitated by ASC staff. My experience at the support group taught me that the need was great and that families were pretty much alone in their search for resources to help their family members with AS.

Through Gail, I heard about the concept of starting an organization solely dedicated to AS, in order to address the growing need of families and adults in a broader, more coordinated fashion. Initially I found my niche by helping to plan AANE’s educational conferences. Those conferences became (and still are) a God-send for people with AS.

Along with AANE staff and community members, I became interested in legislative advocacy as it became clear that the Commonwealth of Massachusetts was not set up to address the needs of those with AS and High-functioning Autism. The Department of Mental Retardation (DMR) was set up solely to meet the needs of those with low IQs, and the Department of Mental Health (DMH) was not in a position to address neurological disorders unless the person with AS had a co-morbid mental health issue. AANE staff and volunteers made phone calls and set up meetings to explain that the AS community was not being served.

In 2002, the Massachusetts State Legislature was redistricted and a new seat was established in my town. I decided to run for political office and was elected to the Legislature. Shortly after being elected, I hosted a meeting between legislators and the Commissioners of DMR, DMH, and the Department of Public Health (DPH), where I shared my personal story. The Commissioners all agreed that our population was underserved, and agreed to internally work out which agency might best coordinate services in the future.

I reiterated the need for services for all people with AS at Autism Awareness Day in April of 2003. At Autism Awareness Day 2004, Commissioner Gerald Morrissey (DMR) and Commissioner David Driscoll (Department of Education) announced that any future services for people with autism would be placed under DMR. Finally there would be a place for our families!

During July of 2004 I collected 94 legislators’ signatures of my House colleagues to support initial funding for this project. Money was included in the proposed budget but the Governor vetoed it.

I spent the first half of 2005 recruiting advocates and professionals from AANE and elsewhere to educate people at the State House about the autism spectrum. In April we did the first-ever teach-in on autism. Dr. Daniel Rosenn, Dr. Karen Levine, parent Anne Guay, and John Hatton, an adult with AS, presented to a large audience of legislators and staffers. Thus began our effort to build awareness of and momentum for starting an Autism Spectrum Division of MA.

We also set up a list of other bills to advocate for:

  • H 4177 requires DMR to apply for a Medicaid Waiver to attract some federal funds for services for children with developmental disabilities. This bill passed in July with a unanimous vote and was signed by the governor in September. We do not yet know how DMR will define eligibility, and how the federal government will respond.
  • H 1123 seeks to ensure that IEP teams consider the complex communication, behavioral, social, emotional, sensory and other academic needs of a student with ASD.
  • S 615 would require that insurance companies cover the costs of services for people on the autism spectrum.
  • Rep Garrett Bradley introduced a bill (yet to be assigned a number) to have medical exam forms list ASD, so better numbers of occurrence can be obtained.

I spent April advocating for funds in the state budget to start up the Division of Autism, gaining the support of House Ways and Means Chair Robert A. DeLeo and Senate Ways and Means Chair Therese Murray. The Division of Autism was funded at $1.2 million and began July 1, 2005. While the dollar amount for this year is modest, and age 18 the current cut off for services, it is a start.

There is much more to do. Nevertheless, we have cause to celebrate. We have come a long way in ten years, and AANE’s vision and leadership have been responsible in large measure for our accomplishments to date.

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