State-wide Family Advocacy Network

The State-Wide Family Advocacy Network of New York State (SWAN of NY) is a new organization dedicated to advocating for individuals with Intellectual and Developmental Disabilities. We are an independent coalition of families and guardians of people with Intellectual and Developmental Disabilities. Caring for our loved ones is our life-long commitment.

Our goal: Ensure families have a voice in every policy decision and at every step of policy implementation that affects the lives of our loved ones. Family participation must be built-in, routine and continuous. After-the-fact consultation or participation in the occasional “advisory panel” is not adequate and not acceptable. Our on-going participation will ensure the creation and sustainability of a system which:Focuses first on the person getting services, not on regulations or agencies;

Focuses first on the person getting services, not on regulations or agencies;

Offers a full range of services to meet the full range of needs, covering all individuals from the most vulnerable to the most capable.

Our reasons: Family members are there from birth to old age, providing care and supervision for our disabled children and loved ones. Our agenda is the welfare of the people we love. We are ideally positioned to assess the impact of policy on our family members and to provide feedback on what is working and what is not. Policy has a concrete and immediate impact on our lives and the lives of our children, siblings, and loved ones. We do not come and go. We are the built-in watchers who will provide a long-term assessment.

We are the ones who worry every day about what will happen to our loved ones when we are no longer there to watch over them. We know that positive change is needed, that society’s treatment of people with disability continues to evolve. Our knowledge and perspective will make that evolution more effective.

 

Member organizations

We have come together from across New York State. We are the parents and families of children with developmental disabilities. We were there at the start, and we are not going away. We are independent of any government or private agency. We are committed to a constructive, cooperative effort with all parties wishing to improve the lives of our loved ones, the disabled citizens of New York State. The founding organizations are:

DDAWNY Family Council: www.ddawnyfamilycommittee.org , (716) 877-7007                                            ddawnyfamilycommittee@gmail.com

ENYDDA :   enydda@gmail.com

LIANDD: liddadvocates@gmail.com

NYC FAIR :  www.nycfair.org ,  nycfair@gmail.com

We come together for continuous mutual support, and for periodic coordinated action. We welcome additional organizations and individuals. To join up, please contact your local organization, or reach out to us at info@swan-ny.org