Autism Action NY

Assemblyman Angelo Santabarbara joined parents, family, friends, professionals and people with Autism Spectrum Disorder Friday to unveil a significant package of legislation meant to enhance the quality of life for New Yorkers living with autism.

The comprehensive bill package, called Autism Action NY, 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.

"This package of bills could make a difference for thousands of families across the state - and it hits home for me," said Santabarbara, whose 14-year-old son, Michael, was diagnosed with autism at age 3. "As the father of a teenage son with autism, I know firsthand the challenges that families in similar situations to mine face each and every day. I want the parents, siblings, friends and other caretakers of people with autism across the state to take comfort in knowing that they are not alone.

"I'm fighting to create more opportunities for those living with autism, and it's my hope that this package of legislation will unlock the potential for thousands of New Yorkers."

The bill package has the support of the Autism Society, Schenectady ARC, Liberty ARC, GRASP (The Global and Regional Asperger Syndrome Partnership) and New York State Industries for the Disabled, all of which were represented Friday.

"I'm very familiar with the needs of the autism community in the areas of adult services, and Autism Action NY would go a long way toward addressing those needs," said Janine Kruiswijk, executive director for the Autism Society of the Greater Capital Region. "For one, there is a lack of housing for individuals with development disabilities in general, especially those with autism. People with autism also have one of the lowest rates of employment among people with developmental disabilities."

Kirk Lewis, executive director of Schenectady ARC, said, "This package of legislation addresses several issues that are critical for individuals living with Autism Spectrum Disorder, as well as for their families and the organizations that provide supports and services. As an agency that provides a variety of residential, day and employment supports and services for individuals with intellectual and other developmental disabilities, including Autism Spectrum Disorder, we see the growing need for programs and systems that meet the unique needs presented by people with ASD. These legislative proposals, if enacted, will help providers take advantage of the latest research and the best technology to provide the best supports and services possible. "

Assemblyman Santabarbara's 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 development disability in the country, and there is a crisis for support services that needs immediate attention," Santabarbara said. "This is only the first step in bringing awareness and solutions to the obstacles our families affected by autism are facing, but it's an important step in the right direction. About 1 in 68 children in the United States are living with autism, and at some point it will be 1 in 68 adults.

"Now is the time to take action. We must do everything we can to give people with autism the support and interventions required to ensure they live a full and productive life."

The plan includes:

  • The creation of a statewide Autism Spectrum Disorder Advisory Board (A.8635) which would implement the Autism Action Plan, develop a state service delivery system and incorporate new information as it becomes available.

  • ACCES-VR (A.5141), which would add communication support to the state's current vocational rehabilitation services to improve employment outcomes for job-seeking with autism;

  • An Autism Home Loan Program (A.8696) to provide interest-free loans for the construction of long-term need specific housing, allowing families members of people with autism to leverage their own resources. The owner-occupier of single family homes where someone with disabilities lives with their families could obtain a loan for up to $50,000 or half the cost of the construction costs to add an accessory unit of up to two bedrooms;

  • A Communication & Technology Bill of Rights (A.8708) that would give people with disabilities better access to technology and information by making devices and platforms more compatible with the needs of people with developmental disabilities; and

  • A first-of-its kind standardized Autism I.D. Card (A.8389) for New Yorkers to replace locally issued identifications and homemade notes. This card would assist people with autism in their communication with law enforcement and first responders in emergency situations.

Leaders and advocates in the autism community locally and across the state, as well as public safety officials, have voiced their support for Autism Action NY.

"Individuals on the Autism Spectrum and others with developmental and physical disabilities deserve meaningful opportunities, in their everyday lives, to feel fulfilled and productive," said Jennifer Saunders, CEO of Liberty ARC, a nonprofit organization that provides support and services to children and adults with disabilities in Montgomery County. "Autism Action NY will, without a doubt, help facilitate significant changes in housing, employment and access to technology, therefore improving the quality of life for these individuals. On behalf of Liberty, our families and advocates, we thank the assemblyman for his continued support for all individuals with special needs."

Schenectady Fire Chief Ray Senecal said, "In emergency situations of all types, it is often difficult to obtain proper personal identification, contact information and medical information. Having this information readily available to emergency personnel in written form would be of great benefit in providing the proper care and medical treatment to all, but especially to anyone that may have difficulty communicating or that may be unconscious."

Rebecca Botta-Zalucki, a graduate student at SUNY Albany and disability rights advocate who helped craft the job-training legislation, said, "There is nothing worse than being told one cannot pursue great things in life based simply on a diagnosis whose name has become synonymous with 'deficit.' Let's continue to recognize the unique strengths and skills autistic persons possess and focus our attention on more effective services, like communication support, which may transcend across various sectors and provide a platform for autistics to find their voice. This legislation proves that New York is on the verge of becoming a model state, helping to break down systemic barriers which have prevented autistic persons from achieving gainful employment."

Ron Romano, president and CEO of New York State Industries for the Disabled Inc., said, "NYSID celebrates the contributions of New Yorkers living with Autism Spectrum Disorder to the social and economic well-being of our communities. We applaud Assemblyman Santabarbara for his comprehensive plan designed to create services and supports for these New Yorkers, their families and caregivers. We join the assemblyman in his call to include communication support services through vocational programs like ACCES-VR, to improve employment outcomes for some job-seekers, particularly those with autism."

Kate Palmer, president and CEO of GRASP (The Global and Regional Asperger Syndrome Partnership, Inc.), said, "The five bills that comprise Autism Action NY are necessary and vital to increasing the quality of life for New Yorkers with Autism and their families and caregivers. With regard to autism I.D. cards, I have supported the idea of having a clear, reliable, and recognizable means of identification for individuals across the lifespan with our members and the community for years. The creation of the state-issued autism I.D. cards would be a life-changing and life-saving opportunity for individuals who encounter first-responders or need assistance in the community. Assemblyman Santabarbara has continued to advocate for individuals with autism and their families with the introduction of Autism Action NY and I fully support his efforts for our community."

According to the Autism Society:

  • About 1 percent of the world population has Autism Spectrum Disorder.

  • An estimated 1 in 68 children in the United States are born with autism.

  • More than 3.5 million Americans live with an autism spectrum disorder.

  • Prevalence of autism in U.S. children increased by 119.4 percent from 2000 (1 in 150) to 2010 (1 in 68), making autism is the fastest-growing developmental disability.

  • Prevalence has increased by 6-15 percent each year from 2002 to 2010.

  • 35 percent of young adults (ages 19-23) with autism have not had a job or received postgraduate education after leaving high school.

  • In June 2014, only 19.3 percent of people with disabilities in the U.S. were working or seeking jobs. Of those, 12.9 percent were unemployed, meaning only 16.8 percent of the population with disabilities was employed. By contrast, 69.3 percent of people without disabilities were in the labor force, and 65 percent of the population without disabilities was employed.

If you would like more information about Autism Action NY, please click here.