The article below was co-authored by AHRC NYC’s Self-Advocacy Advisor, Matthew Estep and Dylan Watton, Communications Coordinator.

Advocacy has taken on fresh importance as the I/DD field undergoes rapid change over the past few years. It is essential for local, state, and federal legislators to hear firsthand how their support can make a difference in lives of people with developmental disabilities, their families, and the staff members and organizations that support them. In 2019, staff members, board members, and self-advocates from several AHRC NYC programs visited with legislators in Albany and Washington D.C. to make their voices heard.

Now more than ever, the focus on open and direct communication is paramount. AHRC NYC has an obligation to open those doors,” said Marco Damiani, CEO. “We continue to identify and empower many people we support to be passionate and compelling advocates of things that matter to them.”

Advocating in Albany

In February, four self-advocates representing AHRC NYC made the trip to Albany to educate their elected officials on issues that affect the community of people with disabilities in New York. They were joined in Albany by a group of students from the Melissa Riggio Higher Education Program at Hostos Community College. These students made their voices heard in a rally for funds to support students with disabilities in college alongside their colleagues from CUNY.

Elyssa Zeller, a self-advocate from EBS – Brooklyn’s Day Habilitation Without Walls program spoke to her representatives about the staffing crisis our industry currently faces and the #bFair2DirectCare campaign. Chad DeRoche from Brooklyn Day Habilitation described the struggles he has faced accessing public transportation and called for more funding for transit accessibility.

Danielle Levine, a senior from the Melissa Riggio Higher Education Program at Kingsborough Community College, made her third trip to Albany to advocate for a change to employment laws that she says discriminate against people with disabilities. Her work paid off when Senator David Carlucci sponsored a bill, S-3890: “Allows the Individualized Education Program or IEP diploma to be accepted whenever a high school diploma or GED is required for employment.”

If this bill becomes a law it will allow people who hold IEP diplomas to interview for jobs that are currently out of reach due to their credential not being treated as equivalent to other forms of diplomas.  This is especially important for people applying to entry-level positions which usually require online applications which do not recognize the IEP diploma. The bill is currently being debated in the Education Committee.

Watch as the self-advocates explain their positions in their own words:

AHRC NYC at the Disability Policy Seminar and Capitol Hill

From April 8-10, a cohort from AHRC NYC attended the Disability Policy Seminar in Washington, D.C., learning more about current federal legislative issues facing the disability community while also taking the opportunity to speak directly with legislators and their aides in Congress. Among important priorities, AHRC NYC highlighted to legislators were protecting Medicaid, especially from the threat of block grants; supporting frontline workers, the majority of whom are female and of an ethnic minority; and ensuring access to education and employment for people with intellectual and developmental disabilities.

Our team, led by Marco and the participation of Board Members, staff members, parents and self-advocates joining together to visit our representatives, was extraordinary,” said Sharyn Van Reepinghen, President of the AHRC NYC Board of Directors. “We focused on the highest priorities affecting our people:  Medicaid, Social Security, and Supplemental Security Income.  We further discussed the need for a fair living wage for DSPs, improving funding for education, housing, and employment. The self-advocates clearly brought a very strong voice to the discussions by expressing their accomplishments and their desire to speak out for those who cannot speak for themselves.  They were truly impressive!

Legislators/aides that met with AHRC NYC included both New York Senators, Chuck Schumer (the current Senate Minority Leader) and Kirsten Gillibrand; Representative Grace Meng of Queens; Rep. Carolyn Maloney of Manhattan; Rep. Nita Lowey of Westchester County; and Rep. Max Rose of Staten Island.

Self-Advocates Make Their Issues Heard

In Washington, self-advocates Michael Carbonaro and Danielle Levine engaged with legislative staff on the issues of educational opportunities and quality employment, respectively. “The college experience has changed me drastically for the better,” said Michael in his remarks at the Capitol.  “All people, both with and without disabilities should have the opportunity to go to college because they will gain so much perspective on their lives and on the lives of their fellow students.  As a person with a disability attending college, I ask you to please reauthorize the Higher Education Policy Act not only for our programs but for all programs across the fifty states so that myself, Danielle, and all people with disabilities who want to go to college can prove to ourselves and the world what we are capable of.”

The classes I took in college helped me to get ready to work and when I graduate I will be working as a team coach for Punkin Futz where I will assist other people with disabilities work to assemble products for the disabled community,” Danielle said. “Unfortunately most people with disabilities struggle to find jobs.  Most of my classmates and peers are not working.  I am one of the lucky ones and I want my friends to have the same kinds of opportunities to work. People with disabilities have a lot to contribute but they struggle to find opportunities to do that.  We are capable of doing more and just want the chance to prove ourselves.”

The AHRC NYC Advocacy team attending the Disability Policy Seminar was a cohesive group of self-advocates, parents and board members and staff,” said Laura Kennedy, Board Member at AHRC NYC and the Arc of the United States. “Our self-advocates, Danielle and Michael, were the best in expressing their accomplishments and aspirations to those legislators who we have entrusted to support us. This was the best year ever and I am thankful for the opportunity we all had to be a strong voice on behalf of everyone AHRC supports back in New York!