“If you do nothing, nothing happens.” This is one of Marion Resnick’s mantras. One of the Executive Committee members of NYC Family Advocacy Information Resource (NYC FAIR), Resnick has been fighting for decades to make sure that New Yorkers with intellectual and developmental disabilities (I/DD) receive the support they are entitled to and need to thrive. She is one of many citizen advocates, a group that includes parents, siblings, and people with I/DD that advocate for themselves. And the job has never been more demanding.
Elly Rufer, a long-time friend of Resnick’s, is a co-founder of NYC FAIR, which launched in 2015. Both women readily acknowledged being known as “that parent” – the outspoken, persistent, intermittently obstreperous member of the community whose voice can be ignored only at great institutional risk. As Rufer, who got her start advocating on behalf of her daughter Katie four decades ago, put it, “I was the parent who started parent associations in every spot where Katie's been. [I was the] pain-in-the-butt parent. Even though I was working full time, I was lucky to have an employer who allowed me to do this work at the same time.”
Resnick, too, had to balance full-time work with advocating on behalf of her son Jeffrey. Starting in 2001, she recalled helping lead the charge to develop a group home for Jeffrey and his friends—an outgrowth of a theater program he participated in. "I was the advocate for that residence,” Resnick said. “I moaned, I complained, and people stopped wanting to listen to me. Eventually, over 10 years, I pushed and pushed and pushed, and a family member with political connections got a meeting with the acting director of OPWDD. They stated our case and convinced her to open that house."
It became clear to Resnick and Rufer that many other parents did not have the time to advocate in the same ways or the knowledge of OPWDD’s complicated service landscape.
“All government meetings happened during the day when people were working,” Rufer said. “We started replicating meetings attended during the day in our homes in the evening…and that’s how NYC FAIR was born—a need to provide information to working families who were otherwise clueless.”
Today, Rufer says that things have never been harder. Not since the horrors of Willowbrook State School, which was so notorious that it spurred the national movement for deinstitutionalization, have parents been as concerned. The workforce crisis currently affecting provider agencies threatens basic services throughout the United States. New York providers have seen no cost of living increases for more than a decade, save the latest bump in 2021. As a result, Direct Support Professionals, who are the backbone of I/DD services, are paid close to minimum wage. Since all agencies struggle to hire new workers, day programs are short staffed and residential vacancies remain unfilled.
This crisis spurred an advocacy emergency for all involved in New York I/DD services. Providers like YAI engage in their own advocacy efforts and participate in the statewide New York Disabilities Advocates (NYDA) coalition to influence the budget. Whether advocacy takes the form of direct lobby meetings, people powered rallies, or the tried-and-true letter-writing campaign, it always comes back to Resnick and Rufer’s core belief: “be loud or be ignored.”
Resnick recognizes that many families may struggle to find the capacity for the necessary advocacy, “Now that Jeffrey has achieved many of his goals, I advocate more for the community. Many people just don’t have the time, wherewithal, or language to advocate. When we were growing up, we were always taught to help others.”
“Everyone needs to step up and be heard,” Rufer says. “I can talk all I want, but many say, ‘Oh, Elly’s at it again.’ Volume counts, and we need phone calls, letters, emails. We need urgency—it's time to step up because you won’t have anything if you don’t.”
For more on NYC FAIR’s advocacy and other resources for families, visit http://www.nycfamilyadvocacyinformationresource.org/
For more on YAI’s advocacy and how you can get involved, visit www.yai.org/advocacy
For more on NYC FAIR’s work and other resources for families, visit http://www.nycfamilyadvocacyinformationresource.org/