Demand for disability support services outweighs supply

Jan 23, 2020

Dozens of deaf-blind people throughout Rochester are waiting for funding to help them with everyday activities. One of them is sitting in a conference room of a nonprofit called the Center for Disability Rights.

There’s seating for 10 or 15 in the room, but there are about 25 people at this late September meeting, including U.S. Sen. Kirsten Gillibrand.

Gillibrand sits at the head of the table as she hears stories from person after person in Rochester’s disability community. People like Patty Starr, who is deaf and legally blind.

It's Starr’s turn to speak to Gillibrand. They’re about 10 feet away from each other. Starr has some vision but can only see up close, so through interpreters, she asks Gillibrand to come closer. The room goes silent as Gillibrand says “yes,” walks to Starr and pulls up a chair.

“Hello,” Gillibrand says.

“My name is Patty Starr. I’m unsure if you’ve met before or interacted with deaf-blind people in the past," Starr says. "Have you had experience with deaf-blind people in the past, Senator?” 

“Uh, no. No,” Gillbrand says.

“Never? That’s OK,” says Starr.

Starr has an interpreter sitting to her right and one standing near her. The standing interpreter explains what’s happening in the room to the sitting interpreter using American Sign Language. 

The sitting interpreter, who is deaf herself, explains what the standing interpreter is saying to Starr, through tactile signing, typically by touching her hands. She’s Starr’s Support Service Provider, or SSP. 

SSPs help people with degrees of hearing loss and blindness navigate their communities and do basic tasks like shopping, going to medical appointments, and in Starr’s case, attend meetings like this one. 

She tells Gillibrand about the need for more funding to help hire more SSPs.

“Many deaf-blind are very frustrated without SSP services,” Starr says via her interpreters. “Here at CDR, we have been very fortunate to have that kind of service.” 

Stephanie King and Brooke Erickson run the deaf services department at the Center for Disability Rights. They say there are dozens of people in the area like Starr, but many of them aren't receiving SSP services. King says they can afford only 20 SSPs who work with 10 clients, and each client is limited to 20 hours per month. 

“If their time is used up before the month is out, they just wait till the next month and get their next 20 hours,” King says. “But for the most part, they ration their time and they utilize their time very carefully.”

The funding for the SSP program comes from a mix of government and private sources, including the Wegmans Foundation, which they hope to renew. Erickson, who is deaf, says through an interpreter that she’s hoping the state and federal governments come through with permanent funding. That way, they can hire more SSPs and boost access.

"The deaf-blind community really wants an increase. They want an increase in those hours," Erickson says. "If we can get it at the state level, and that's successful, then there's no doubt that we can move on to the federal level."

After meeting Gillibrand, Starr says her SSP helps her escape isolation and connect with the community.

“Remember, many deaf-blind people live in isolation, many people don’t see deaf-blind people generally in the community,” Starr says. “That’s a very big problem. If you had more SSP services, society would see us more in the community.”

A spokesperson for Gillibrand says the senator has supported measures involving direct support professionals. Earlier this week, Gillibrand introduced an act that would allow patients with disabilities to maintain their direct support professional during hospital stays.

This story is part of Dialogue on Disability week -- a partnership between WXXI and Al Sigl Community of Agencies -- in conjunction with the Herman and Margaret Schwartz Community Series.