New York’s First ‘Autism Action Plan’ Becomes Reality

Governor enacts Santabarbara’s measure into law

The critical piece of Assemblyman Angelo Santabarbara’s Autism Action Plan has now been signed into law (Chap. 469 of 2016). The measure creates the state’s first Autism Spectrum Disorder Advisory Board to develop, implement and update a statewide Autism Action Plan, incorporates new information as it becomes available, and creates a central location for services.

The bill passed both houses by a unanimous vote this past spring and part of a comprehensive bill package Santabarbara introduced earlier this year, called Autism Action NY, which would carry out its mission through the creation and administration of service delivery models and the development of resources to support people on the autism spectrum – from childhood to adulthood. Autism Action NY is a five-point plan aimed at increasing job opportunities; providing independent housing options; improving access to information; assisting in communication; and, most importantly, creating a centralized location for services in New York.

“Autism is the fastest-growing developmental disability in the country, and there is a crisis for support services that needs immediate attention. With this bill signed into law, New York is taking a critical step to help find solutions to the challenges families affected by autism face each day.” Santabarbara said

Leaders and advocates in the autism community locally and across the state voiced their support for Autism Action NY legislative package during Assemblyman Santabarbara’s Autism Action Day at the State Capitol earlier this year, bringing together self-advocates from around the state, representatives from Schenectady and Montgomery counties such as Schenectady ARC and Liberty ARC and the Autism Society of the Greater Capital Region, and statewide groups like the New York State Association of Community & Residential Agencies (NYSACRA) and New York State Industries for the Disabled (NYSID).

Santabarbara added “I speak passionately about this legislation that has the potential to help thousands of families affected by autism and I’m happy to see New York State take action on such an important issue that affects so many,” said Santabarbara, whose now 15-year-old son, Michael, was diagnosed with autism at age 3. “Like many living with autism, Michael needs a voice in Albany, and I’ll continue to be that voice for all those affected by developmental disabilities.”

“We are thrilled to celebrate the passage of the Autism Advisory Board legislation and its signing into law,” said Liberty ARC’s CEO Jennifer Saunders. “It is a victory for individuals with developmental disabilities, providing them with a voice in which to advocate for needed and deserved opportunities such as housing, employment and access to technology. Enhanced communication and statewide teamwork will be a product of this board and will have a resounding impact on the quality of life for individuals on the Autism spectrum. On behalf of Liberty ARC, our families and advocates we thank Governor Cuomo, Assemblyman Santabarbara and lawmakers for their dedication to support individuals with special needs.”

Janine Kruiswijk, Executive Director of the Autism Society of the Greater Capital Region, stated, “The creation of a dedicated advisory board devoted to the needs of the autism community in New York State will allow for the creation of a comprehensive system of care that will meet the needs of all individuals with an autism spectrum disorder. New Yorkers affected by autism have complex needs spanning a wide spectrum of care that can only be met with a coordinated system of care that address the needs of children and adults diagnosed with autism, their family members and the communities in which they live. The Autism Society of the Greater Capital Region applauds the creation of the NYS Autism Advisory Board and looks forward to a better future for all affected by autism in NY.”

Kirk Lewis, Executive Director of Schenectady ARC, said, “We are very pleased that the legislation proposed by Assemblyman Santabarbara that will create an Autism Spectrum Disorder (ASD) Advisory Board has been signed into law. Schenectady ARC supports approximately 1000 individuals with intellectual and other developmental disabilities, including autism spectrum disorders. The ASD Advisory Board will provide an invaluable resource to link advocacy, research, policy and funding issues to make sure we are providing the best supports and services to individuals with ASD. We are grateful to Assemblyman Santabarbara for his leadership on this issue, and we look forward to working with the Advisory Board as we strive to offer the best supports for individuals with ASD and their families.”

“Autism services and supports, including best practices, will take center stage. Individuals with ‘lived experience’ and those with professional expertise will come together, on an even playing field, to ensure services remain in the best interests of those whose lives are directly affected by autism. I feel so genuinely happy knowing this and have no doubt New York will continue to pave the way for continued autism research and support,” said Rebecca Botta-Zalucki, a disability rights advocate and a graduate student at the University at Albany, who helped craft the legislation.

"The Autism Action Bill is imperative to increasing the quality of life of Autistic New Yorkers and their families. This bill will provide individuals and families necessary support through the lifespan, offering residential, employment, and communication assistance and information on the best practices in the field of Autism. Assemblyman Santabarbara's Autism Action NY will be invaluable to our state and we, at GRASP, fully support this legislation," said Kate Palmer, MA, CCP, CAS, Global and Regional Asperger Syndrome Partnership President/CEO.

Ronald Romano, President and CEO of NYSID, said, “New York State Industries for the Disabled, Inc. (NYSID) celebrates the contributions of New Yorkers living with Autism Spectrum Disorders (ASD) to the social and economic well-being of NYS communities. We applaud Assemblyman Santabarbara for his bill creating an Autism Advisory Board that provides the most effective supports and services for individuals diagnosed with ASD across New York State. We support the Assemblyman’s legislation to improve employment outcomes, among other initiatives, for those with ASD, thereby enhancing their quality of life and supporting their families and caregivers.”

“I extend my thanks for the on-going support to help make this victory possible. As the father of a teenage son with autism, parents, siblings, friends and other caretakers of people with autism spectrum disorder across the state can take comfort in knowing that they are not alone and our work is not done. Autism Action is just the beginning. Together we face the challenges many autism families face, but we can overcome those challenges together,” concluded Angelo Santabarbara.

About 1 in 68 children in the United States are living with autism, according to the Centers for Disease Control and Prevention.