The beginning

The Self-Advocacy Association of New York State was founded in 1986 by Bernard Carabello, a former resident of the Willowbrook State School. Between 1985 and 1986 Bernard and twelve other self-advocates serving as the SANYS steering committee worked together to make SANYS a reality. On April 29th, 1988 the Self Advocacy Association of New York State was recognized by New York State as a 501c3 not for profit organization.


A Living Legend

From age 3 until age 21, Bernard Carabello lived at Willowbrook State School, an institution synonymous with neglect and deplorable conditions. With incredible strength and resilience, Bernard was instrumental in joining with Geraldo Rivera and others in exposing the abuse and neglect that was happening at the institution. Bernard’s voice was at the center of the movement that would eventually close down Willowbrook and institutions across New York State.

“I became a self-advocate. I advocated for people who couldn’t speak up for themselves. I became their voice.”

Bernard believed that all people with developmental disabilities should be supported to speak up for themselves and he started SANYS for that purpose. In addition to founding SANYS, Bernard served as its Executive Director from 1986 to 1993 and went on to work as an Ombudsman for OPWDD until 2017. Though retired, he remains a passionate advocate on behalf of people with developmental and other disabilities and continues to be a key figure in the self-advocacy movement. Bernard is one of the great civil rights leaders of our time.


Thank you, Amy

In the early years of the organization, Amy Bittinger worked as Administrative Coordinator of SANYS, supporting the board of directors to recruit a full-time Director. SANYS is indebted to her for her hard work and dedication.

A champion of self-advocacy

Steve Holmes was hired by the Board of Directors to serve as SANYS Administrative Director in 1994. Steve began his career working in a state institution in Massachusetts. From those early days Steve had a deep belief in the inherent dignity of every human person and chose to dedicate his life to promoting the voice of people with disabilities.

Steve served SANYS as its Administrative Director for nearly 24 years. In that time, he was known as one of the foremost disability rights advocates in the nation, and a champion of self-advocacy. He was privileged to stand behind self-advocates as they accomplished great things.

Steve Holmes, retired from SANYS in 2017 but is still advocating through his many social justice activities, including his songs of self-advocacy that have become the soundtrack to the self-advocacy movement in New York State.

Arnold Ackerley with Self-Advocate and former SANYS Board Member Victor Colon.

A passion for people

After Steve Holmes retired in 2017, the Board of Directors hired Arnold Ackerley to serve as the Administrative Director of SANYS. Arnold has a passion for people and enjoys nothing more than promoting the success of others.

Arnold reports to and works closely with the SANYS Board of Directors to promote self-advocacy across the state.

“It is always important for people to use their voice to work towards a better world for themselves and others and that’s what our Board of Directors, staff and self-advocates are doing all across New York State. I am humbled and proud to be a part of this remarkable organization.”


SANYS Leadership

In the decades that followed, many self-advocates have taken up the challenge of serving as leaders of SANYS and the self-advocacy movement. The following self-advocates have served as President of the Board of Directors of SANYS.

  • Harold Patterson
  • Kathryn Schrout
  • Chester Finn
  • Clint Perrin
  • Tony Phillips
  • Don Christman
  • Joseph Perez
  • Rain Ripple
  • Kelly Schultes
  • David Liscolmb
  • Robert Klein
  • Cathy Loquercio
  • Tim Tomkins
  • Coleen Mackin


A Thriving Movement

Over its first 30 years, SANYS crafted a grassroots network that now includes more than 150 self-advocacy groups. There are now SANYS offices in all five regions of New York State. The grassroots presenter project has provided limitless opportunities for emerging self-advocate leaders to give voice to the self-advocacy movement.

SANYS was also instrumental in bringing self-determination (later to become self-direction) to New York State; a project that has increased independence for tens of thousands of people with developmental disabilities. Our AmeriCorps project “Our Experience is the Best Teacher” saw over 300 members offer thousands of self-advocacy-based trainings to more than 50,000 people. And let’s not forget that “we changed the name”.

Self-Advocates spoke up about the use of the “R” word’s inclusion in New York State’s “Office for People with Mental Retardation and Developmental Disabilities (OMRDD)”. We were heard, and, in 2010, the name was changed to the “Office of People with Developmental Disabilities”.

Regional Organizer Mike Rogers sits, wearing a light blue collared shirt.

Our story continues...

Standing on the shoulders of great leaders like Bernard Carabello, all the self-advocates that have served on our Board of Directors, and all those self-advocates who have had the courage to speak truth to power, we look back with a boundless gratitude and move into the future with an unshakeable belief in the power of the human voice to move the world forward.

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