SANYS 2017 Policy Statement


Self-Advocacy Association of New York State, Inc.

2017 Legislative and Policy Platform


We at the Self-Advocacy Association of New York State (SANYS) are an organization founded by and for New Yorkers with developmental disabilities.  The voting members of our board of directors are self-advocates who employ professionals, with and without developmental disabilities, to support our important mission.  We have been supporting people with developmental disabilities to speak for themselves for over thirty years.

We believe that people with developmental disabilities want to live the same lives as everyone else.  To achieve this goal, we feel that it is important that we and our allies understand the following principles:


We must be supported to plan our lives in the ways we want with our friends and family.  We are seeking increased self-direction in our own lives and the continued development and innovation of person centered planning practices across NYS.  We also support the development of supported decision making models within NYS.


We must have control over our own resources and enough resources to live full lives.  To achieve this, self-directed services must become increasingly available in New York State.  Too often, people requiring intensive supports, or those living in rural areas, are unable to access self-directed services.  Self-directed services must be simple to access and robust.  There must be an adequate number of professionals, Fiscal Intermediaries and Self-Direction Brokers, to support timely entry into services and provide quality support throughout transition and duration of services.


We need the right support to live the lives we desire and participate fully as citizens in our communities, state and nation.  We need a skilled, caring, and properly paid workforce. The people who work with us work hard and we appreciate them a lot.  We ask that the Direct Support Professionals we rely upon receive a living wage.  A living wage will help safeguard relationships and continuity of services for people with developmental disabilities.


We recognize that the rights of citizenship and self-determination come with responsibilities and we embrace them.  However, we deserve to be recognized as responsible people.  We also recognize the need to manage our resources correctly and give back to the communities that we live in.


Self-advocates need to be at the table locally and at the state level on policy making and training.  It is vitally important that we be leaders in developing the plans for our own lives. Policies and services need to be person-centered on all levels; one size does not fit all.  Services should be about us, not the system. True person-centered planning and thinking needs to be supported.  In particular, we seek greater transparency from policy makers and continued input from self-advocates and other stakeholders regarding the upcoming transition to managed care.


We want accessible, affordable and safe homes in the communities of our choice.  These choices should include houses and apartments in our names when possible.  When self-ownership or leasing is not an option, opportunities should be provided in small group homes that are compliant with the HCBS community rule; they must be integrated, provide community access, chosen by the person, support privacy, dignity and respect, and promote maximal independence and self-determination for people with developmental disabilities.


We want many options for what we do during the day. The first option explored for everyone should be employment in a job of their choice at minimum wage or better. If that is not possible, then innovative, person-centered daytime opportunities should be offered.  We also want to be supported to volunteer and give back to our communities. We want to do these things at the times and places we choose.


We want relationships with our friends and family. We also seek to define the nature of our own intimate relationships.  These must happen in the time and place of our choosing.  As adults, or youth transitioning to adulthood, we need the freedom to freely form our own identities, this includes the areas of sexuality, gender, disability, religion, and political affiliations.


We also need transportation to help us to get to all the places we need to go. Transportation must be safe and reliable and readily available in our communities.  However, currently the limited availability of transportation is a significant barrier to people with developmental disabilities living more independently and contributing more to their communities.

We ask that you consider today meeting the beginning of a dialogue with self-advocates for the upcoming year.  We urge you to consider the above principles anytime you are engaged in any planning that impacts New Yorkers with developmental disabilities.  We look forward to speaking with you further in the future.

The above statements represent views of the board of directors and members of the Self-Advocacy Association of NY State.  For more information, or to schedule a meeting or visit, please contact: Arnold Ackerley, Administrative Director at or 518-382-1454.

To download a Word version of our SANYS 2017 Policy Statement, Click HERE.