…being born with autism, or Down Syndrome, or cerebral palsy, or a brain disorder — or getting wounded while honorably serving this country — should never mean the death of your right to liberty and basic dignity. READ THE ARTICLE HERE

Families Issue Report to the Governor Regarding Urgent Housing Crisis

It has become increasingly difficult for people with intellectual and developmental disabilities to secure the residential placements they need to live safe, secure, and independent lives in their communities. Families are doing more to make people aware of this crisis and they need YOUR help. Please read more about this problem and how you can help HERE.

OPWDD Schedules Care Coordination Webinar For August 7

OPWDD is moving forward with a new initiative aimed at enhancing care coordination for people with developmental disabilities. Acting Commissioner Delaney has announced a webinar on Monday, August 7 for individuals and families served through the OPWDD system. This online presentation will describe plans for the move to enhanced care coordination, as well as provide the reasons for this shift and a timeline of anticipated next steps.  READ MORE HERE


For anyone interested in Self-Direction, SWAN is establishing a work group to specifically focus on issues related to Self-direction.  The work group will be co-chaired by Jim Karpe (  and Brad Pivar ( who are members of the SWAN steering committee and whose children are participants in Self-Direction.  If you would like to participate on this work group, please contact Jim or Brad.

Families Ride From Baton Rouge To Washington To Highlight Critical Importance of Medicaid

Families joined forces to take a stand against Senate Republicans’ health care bill, which proposes deep cuts in federal spending on Medicaid. READ MORE HERE


OPWDD Announces Web-Based Resource:

The website is a free tool to help all New York State students and young adults with disabilities who are ready to move from school and other settings to a paying job. According to OPWDD, the website gives users one place to find all the information they need, regardless of where they live in New York State, to create a path towards employment.

Here ( is a video tutorial that helps explain the website.

Advocacy Groups Work to Stop Devastating Cuts to Medicaid

Dozens of advocacy groups joined members of Congress to sound alarm bells about proposed cuts to Medicaid, which they say will have severe consequences for people with disabilities READ MORE HERE


ANCOR, a national organization based in Washington, D.C.,  is working with other organizations to organize a disability advocacy rally in Washington on June 6 in an effort to protect Medicaid funding. The rally will draw attention to the need to prevent the Senate from passing any bill even remotely similar to the America Health Care Act, which was passed in the House of Representatives and contains provisions that will significantly impact people with disabilities, including over $800 billion in cuts to Medicaid. New York Governor Andrew Cuomo has repeatedly spoken about the devastating impact this bill would have on New York, including billions of dollars in cuts to the state’s Medicaid program.

We encourage anyone who can to attend the rally and make your voice heard.  for more information on the rally and the effort in Washington to prevent these devastating cuts please visit their website HERE.

What’s at Stake Under a Block Grant or Per Capita Cap?


Governor Andrew Cuomo promises to join Legislature and #bFair2DirectCare.


Governor Andrew Cuomo joined the NYS Legislature and backed a plan to raise wages for direct care workers.


 A Report on The Justice Center

Provider groups representing more than 250 not-for-profit agencies supporting New Yorkers with disabilities issued a report in November 2016, calling for a review and refocusing of the New York State Justice Center for the Protection of People with Special Needs (Justice Center). The report, The Justice Center: Opportunity Missed, is based on responses to a survey from 119 organizations across the state that provide supports and services for people with disabilities.

View the news release HERE

View the full report HERE

View the Executive Summary HERE