REPORT ON BILLS FAVORABLY REPORTED BY COMMITTEE

TITLE OF BILL:

AN ACT ESTABLISHING A PILOT PROGRAM TO PROVIDE SERVICES TO INDIVIDUALS WITH AUTISM SPECTRUM DISORDERS.

SPONSORS OF BILL:

REASONS FOR BILL:

To require the commissioner of Mental Retardation to establish and operate a pilot program to coordinate supports, services, and case management for individuals with autism spectrum disorders who do not qualify for services from the Department of Mental Retardation.

RESPONSE FROM ADMINISTRATION/AGENCY:

House Speaker James Amann testified in support of this bill. According to the Centers for Disease control 1 out of 165 people fall somewhere on the Autism Spectrum. That equates to 22,000 people in Connecticut. Experts say that many adults with developmental disorders are more than capable of living productive, independent lives, but they need job, life skills, and independent living coaching. Given many autistic adults' ability to learn, once services are in place, with time, they are likely to need only minimal supports and will become tax paying contributing citizens.

James McGaughey, Executive Director Office of Protection and Advocacy for Persons With Disabilities, testified in support of this bill. Connecticut is one of only three states that do not provide support services for individuals with Autism Spectrum Disorder. Most adults with Autism Spectrum disorder do not need hugely expensive programs of support. Rather, they need assistance with life planning, specific strategies to compensate for their disabilities at work and within their neighborhoods, help building networks of support; guidance in solving routine problems; and varying levels of service coordination. With a little help these individuals could lead fulfilling lives as contributing members of their families and communities; without it many face bleak futures of dependence, risk and rejection.

Representative Christopher G. Donovan testified in support of this bill. The families of adults with autism spectrum disorder continually run into road blocks when they seek state services because their needs have been deemed less severe than those with mental retardation. Yet many services sought by adults with autism spectrum disorders are very similar to those offered to adults with mental retardation. We should expand, and modify where necessary, our existing services to include this vulnerable population. The $10 million pilot program proposed in House Bill 5471 will help 500 residents reach their full potential for being integrated members of our community.

Jeanne Milstein, Office of the Child Advocate, testified in support of this bill. Children with Autism currently receive services through the special education system but do not have any services available once they leave school or reach the age of 21. As a result, even after significant progress in school, these young adults suddenly begin to fail. Children and young adults with Autism spectrum disorder often display many strengths such as: high IQ scores, good long term memory, ability to perform precise tasks, adherence to strict rules or schedules, honesty, integrity. However, do to difficulties with many tasks most take for granted making the transition to adulthood can be very challenging. Services for persons with autism spectrum disorders cost approximately $10,000 to $19,000 per year. For People with autism spectrum disorder without mental retardation, social and independent living skills training can make a full productive life in the work force possible.

Representative Catherine F. Abercrombie testified in support of this bill on behalf of her friend Dillon. Dillon was born with autism and thanks to early intervention and the determination of his mother is now in the 4^th grade and will soon go on to middle and then high school. After high school, however, things will change for Dillon as Connecticut is one of only three states that do not provide services for Autistic adults. This bill offers the opportunity to change the future for Dillon and many other individuals with Autism.

Representative Cathy Tymniak testified in support of this bill. Connecticut is one of three states that do not provide services for adults with autism spectrum disorder. The pilot program would help adults with autism spectrum disorder to live more independently in their communities and be able to secure employment. This small step toward addressing the problem will hopefully eventually lead to an expanded state wide program.

Senator Judith Freedman testified in support of this bill. It is important to establish needed services, for the young adult population living with this disorder. The medical profession has become more sophisticated and knowledgeable about this disorder over the past 35 years but the state has failed to keep up with that research as it continues to fail to provide services that this group requires. This program will give help to those who have fallen through the cracks to obtain services already available in 47 other states. For far too long, the advocates for the autistic population have been trying to get services for their family members. This program is a small step but shows that Connecticut as a state is still compassionate about those who need our help.

Representative Linda M. Gentile, provided testimony in support of this bill, stated that having family members with autism create financial hardship and emotional strains for the entire family and this bill would help alleviate those issues.

NATURE AND SOURCES OF SUPPORT:

Kathryn Strout submitted written testimony in support of this bill. The testimony stated that people with Autism Spectrum Disorders can be taught the life skills that they need to function independently and should have the same services provided to those with more sever disabilities.

Alice B. Buttwell submitted written testimony in support of this bill. Someday the lines will NOT be drawn as to what kinds of disabilities and disorders people have in order to be eligible for State services.

Tara J. Glennon, Professor of Occupational Therapy, Quinnipiac University. Since Autism Spectrum disorder implies a spectrum of functional ranges various new adult roles are possible for children with this disorder including: graduating from college, going directly into the workforce after high-school, or finding a way to engage in meaningful leisure pursuits. Children are currently serviced under the Education for All Handicapped Children Act of 1975 and Individuals with Disabilities Education Acts of 1990. It is confusing but this support does not continue into adulthood. The testimony recommends that given the new research findings and literature with regard to the diagnosis of autism spectrum disorders, the state should adjust its programming to meet current societal needs.

Diana J. LaRocco, Ed.D. testified in support of this bill. Despite a legislatively mandated report (Advisory Commission, 2002) that recommended serving individuals with Autism Spectrum Disorders and related developmental disabilities, who do not have mental retardation as defined in section 1-1g of the general statutes as amended, Connecticut does not yet provide services and support to this population. A May 16, 2005 report, Autism Spectrum Disorders Road Map, the Federal Interagency Autism Coordinating Committee (IACC, 2005) stated: “All individuals, including those with ASD, deserve to grow, learn, live, and work in inclusive communities where differences are respected and needs met” (p. 12).

The Arc Connecticut submitted testimony in support of this bill. The testimony recommends that the current legislation being considered by the Human Services Committee requiring DMR to seek a federal Medicaid Waiver for services for individuals with Autism Spectrum Disorder be merged with HB 5471 and funding be appropriated to fund them.

Ronald Sallerson testified in support of this bill. The family moved from Minnesota in order to send their Autistic daughter to a private school that provided her with the best environment to learn the skills necessary to live independently. However, this turned out to be a trade off as Minnesota coordinates services for adults with Autism Spectrum Disorder under the Department of Developmental Disabilities and Connecticut currently provides no services to this population.

Ami Klin, PhD, Associate Professor of Child Psychology and Psychiatry, Yale University, testified in support of this bill. There are 4 individuals with autism and related conditions per 1,000 births. That equates to 14,000 individuals in the state of Connecticut, approximately 10,000 of whom are adults. Epidemiological data also shows that 30 to 40% of these individuals do not have mental retardation. The testimony gives a very in-depth outline of the core areas where intervention and services are needed for normative IQ adults with autism spectrum disorders including: social and communicative skills, Adaptive Skills, Comorbid features, Organizational skill deficits, vocational opportunities, organizational and daily living challenges, and meaningful relationships. Professionals assigned to work with these individuals need to undergo training in a number of areas. Adults with autism spectrum disorder working with competent well trained professional can become valuable assets to firms which employ them and learn to live independently.

Lois Rosenwald, co-director of The Connecticut Autism Spectrum Resource Center, testified in support of this bill. Connecticut has a substantial shortage of trained professionals to work with the population of ASD. Therefore even when families are willing to hire private providers of service it can be difficult to find them and even more difficult to find those who are truly qualified. A critical part of this pilot program needs to be the training of a competent work force.

Chera S. Gerstein, parent of a 16 year old child with autism, spoke in favor of this bill. Personal testimony was given as to the positive impact this bill would have on adults with autism.

Scott J. Kernberg, offered support with same personal testimony.

Elaine Groth, parent of a child with Asperger's Syndrome, offered testimony in support of this bill. Asperger's Syndrome is a disability within the autism spectrum of disorders. Patients that suffer from brain disorders have varying degrees of disability. Some people with these disorders have the capacity to be taught to function and become productive members of society, but programs are needed.

Beth Curtis Cvejanovich, provided testimony in support of this bill. She has a brother as well as a son with autism and is familiar with the way the system works. She stated that her brother, because he was also diagnosed with mental retardation, will receive services until his death, and she questions why the same services are not provided for people with autism after they reach the age of 18.

Lois Rosenwald, Co-Director, Connecticut Autism Spectrum Resource Center testified in support of the bill. Autism spectrum disorders (ASD) are estimated to affect 1 in every 166 individual and Connecticut is one of few states without services for adults with ASD. Connecticut has displayed through their lack of action, the lack of awareness, compassion and responsibility to a large number our citizens.

On-going appropriate support and services from school to adulthood will help individuals with ASD develop the skills needed to work and live independently and become taxpayers of our state. This pilot program will be a wonderful first step but, a Medicaid Waiver is needed to expand services to the remaining ASD residents.

Ellen Durnin testified in support of the bill. Children with autism and not mental retardation have special needs that are addressed by the school system until their 21^st birthday. Upon their 21^st birthday there are no services or support offered by the state of Connecticut. These young adults will continue to require support in areas of transportation, personal finances, vocational support, and life skills instructions.

Connecticut, Alabama and Mississippi are the only three states in the country that does not provide support for adults with autism without mental retardation.

Sherri Vogt testified in support of the bill. My daughter attends school out of district due to her lack of social skills. If the Department of Mental Retardation provided services and support for people with autism spectrum disorder my family would have the support we need.

Finding a mentor or respite to help has been a long journey. Systems of care and wrap-around services should be easier to find. Having health insurance coverage does not solve the problems of families of individuals with autism spectrum disorder; we need the help of the state.

Jessica L. Tell, parent of an adult child with Asperger's Syndrome, offered testimony in support of this bill. She stated that instead of the concept of “no child left behind” the state should adopt “no disabled child left behind” and “no disabled young adult left behind”. Statements were made that it is a tragedy that an intelligent, willing individual with a lot to offer and contribute to society will have no choice but to rely on public support for basic needs throughout their entire life. By offering training and assistance through programs being proposed, adults with autism will be able to maintain some independence.

Ten other families testified with personal stories of the struggles faced by their children how a program that provided services to them as adults could improve their lives. The testimony is on file in the Public Health Committee Office.

NATURE AND SOURCES OF OPPOSITION:

None