Invisible no more 
Families across State band together

Parents and family members of individuals with developmental disabilities have come together from across New York State to form a new coalition dedicated to advocating for their loved ones.  “Developmental Disabilities affect the lives of hundreds of thousands of New Yorkers. We might be the largest invisible group in the state.” said Brad Pivar, an Albany parent.  To raise visibility, family advocacy groups from across the state have created SWAN, the Statewide Advocacy Network of NYS for individuals with intellectual and developmental disabilities (www.swannys.org).

Family Advocacy has been vital to the development of services in New York State. The level of care in NYS under OPWDD (Office of People with Developmental Disabilities) has been hailed as a model, nationally and globally. Now, say advocates, there is a quiet transformation aimed at reducing costs regardless of the outcome—and family members have a front-row seat to the negative results.

“We have thousands people who have spent years on the waiting list for housing,” says Barbara Delong, a Buffalo parent and member of DDAWNY Family Committee, “but there is little development of new housing opportunities. And housing isn’t the only issue.  There are waiting lists for all types of services and more people are entering the system every day.”

Advocacy efforts have been going on all across New York State, but there has been little coordination until now.  To change that, parents from four organizations in different parts of the state started a dialogue in September, to figure out how they could all work together.  “We welcome all advocates,” says Jim Karpe, a Queens parent and member of NYC FAIR, “including self-advocates, parents, relatives and friends.  Our aim is to create a vision which people across the state can endorse.”

“Our group has always wanted to connect with other parents around the state,” said Will Mayerik, a Westchester parent and GROW member.  Mr. Mayerik expressed his hope that the network continues to expand.  He added, “We know there are many families across the state who share our concerns.”

For information on SWAN and to have your local group join in, visit the website atwww.swannys.org.  Or, contact one of the four founding groups:  DDAWNY Family Committee in Western New York, ENYDDA in Albany Region, GROW in Westchester and Hudson Valley, and NYC FAIR in New York City.