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Zaccary Fargo, at NYSARC Habilitation Center in Canton. Photo: Julie Grant
Zaccary Fargo, at NYSARC Habilitation Center in Canton. Photo: Julie Grant

Proposed developmental disability cuts worry families

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New York's government has proposed cuts of nearly a quarter of a billion dollars from programs for the developmentally disabled. That's got a lot of North Country families worried, as agencies that provide those services say they're going to have to make some cuts of their own if this goes through as part of the budget.

Daphne Pickert is executive director at the St. Lawrence NYSARC. She says her organization's budget was cut by nearly $1.3 million just a couple of years ago. They made adjustments, and were able to keep all staff and programs intact. But now the agency is slated to be cut by the same amount again this year.

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"The loss to us just becomes too difficult to handle. And unfortunately we know it would affect services. Some people would either have services taken away or reduced significantly."

Pickert says NYSARC will need to cut one of every ten employees.

This loss of services could be devastating for some developmentally disabled adults and their families.

Why do so many people work here?

The St. Lawrence NYSARC agency employs more than 600 people, and serves 750. When I first saw those numbers, I didn't get it. Why did so many people work there?

Then I walked around the Commerce Lane Day Habilitation Center in Canton.

Kelley Rheaum is the program director. As we walk down the hallway, there are pairs of people everywhere. One man limps passed us, groaning, leaning on a worker's arm. We walk into one room, and before I know what's happening, there's a heavy hand grasping the buttons on my jacket.

It was startling, and a little scary. But it was a vivid example of why NYSARC needs so many employees. The clients need someone paying attention to them.

Zaccary Fargo

In the lunchroom, we meet Zaccary Fargo. He's a burly 21 year old, with dirty blond hair and a shy smile.

Zaccary is one of the more active clients at the Center. He decides what he wants to do each day, and he keeps busy. Sometimes Zac swims. Or helps deliver meals on wheels to older folks in the community.

He was hard at work before lunch today, cleaning bathrooms. Zac's excited because he's going out in the community with one of the workers this afternoon.

The worker might take him to Burger King, or the Fashion Craze, or to swing at the park.

Zac's mother Kelly Simons says he loves it. "He looks forward to it."

Braeden Fargo and his mother, Kelly Simons, at their home in Lisbon. Photo: Julie Grant
Braeden Fargo and his mother, Kelly Simons, at their home in Lisbon. Photo: Julie Grant
I drove to Lisbon to meet Kelly and Zac's siblings while he was on his adventure. Their country home is small and newish. The house is clean and organized. Simons says Zac needs structure, the NYSARC program provides it, "and if he doesn't have that it all kind of goes out the window, and he gets very very stressed and upset."

Breaden Fargo, Zac's 15 year old brother, talks about what that means: "He'll claw things, he yells, bursts out things, when he's angry." Kelly says he gets very aggressive, "mostly toward Braeden, when he doesn't have something specific that he should be doing."

Kelly says Zac will get up in someone's face when he's angry. Or he'll walk up to strangers for a hug or kiss when he's feeling good.

Kelly's job is working with developmentally disabled children, so she understands the value of NYSARC.

She says the cuts will be devastating, to Zac and her. But also to Braeden and his sister.

"It's overwhelming, basically. There's all these variables, and what if's. What if he doesn't have programming. What if I have to quit my job and stay home. That's going to have effects on them. They're not going to be able to play sports, they're not going to do what kids do. It's just not going to be a possibility anymore."

Even with the NYSARC services, having a developmentally disabled brother is a lot of work.

Kelly leaves for her job in the mornings before Zac gets on the bus to the Habilitation Center. Braeden and his 16-year-old sister make sure he has his shoes tied, has his lunch, and that he gets on the bus to Canton okay.

"Well I actually enjoy having him as a brother. He's not like everybody else, but he's still my brother."

Braeden says they tease each other like any brothers, and he misses Zac when he's not around.

But still, he's thankful Zac has the NYSARC program on weekdays, and that he goes out on late afternoon outings with an aid, like right now.

"We can do our homework without him talking to us, telling us to write things down, telling us to do stuff for him. Just gives us a break."

Braeden says he has more responsibility than his friends: "Most of my friends, they go home and play Xbox and stuff all day. I have to come home and talk with Zac and do what Zac wants me to do. I mean, not all the time. But it's just they don't have the responsibility we do as much. I don't think. I mean they have to put their clothes away or something. But we've got Zaccary."

Zac has made a lot of progress since joining the NYSARC program a couple of years ago. Kelly says he's learned how to act in public.

But there are still tough moments. Braeden chokes up as Kelly recalls an incident last summer. Zac was wearing a Transformers mask at the park. Another boy came up to them.

"He asked why he had the mask on. And he basically called him a retard. It's very upsetting and it hurts, and you get very angry with people."

What makes Kelly most angry is that the cuts are targeted to people who don't understand what's happening, and can't fight back. If services at NYSARC and other agencies are cut, she fears developmentally disabled adults like Zac will be forced to stay at home, instead of learning to be part of the community.

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