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What you need to know for 01/16/2017

Three families struggle to find a home and care for their developmentally disabled daughters

Three families struggle to find a home and care for their developmentally disabled daughters

In advance of Tuesday's rally at the state Capitol, three local families talk about their struggles
Three families struggle to find a home and care for their developmentally disabled daughters
From left, Linda Karins, Susan Nevins and Rusty Kindlon stand above daughters Marci Tymchyn, Allison Nevins and Kelly Kindlon inside the Nevins residence in Guilderland. (Jeff Wilkin photo)

Some words are beyond the grasp of Allison Nevins.

One word she knows is “independence.”

Allie is developmentally disabled. At 33, she is friendly, conversational and loves baseball and camping.

More than anything, she wants to leave her parents’ Guilderland home and move into her own place with longtime friends Kelly Kindlon, 32, also of Guilderland, and Marci Tymchyn, 31, of Colonie.

“We’re like three peas in a pod,” said Allie, who has difficulty walking and was born with one eye. “We’re just best friends forever. I want to move out with my friends, I want to be independent ... I’m so ready.”

The three young women — Kelly and Marci are also disabled — have few options for independence. The ideal situation would be a home owned and operated by New York state and staffed by certified, state-employed health care personnel. Parents of the three women have been trying to find the friends a group home for the past 10 years. But cuts in the state budget have stalled the process — no money is budgeted for new homes or round-the-clock staffing.

Hundreds of parents throughout the state with similar placement problems are expected at a “flag rally” Tuesday at the Swan Street entrance to the state Capitol. The organizing group — Family Advocates United, a consortium of nine Western New York groups that work with the handicapped — hopes to raise awareness for the need for residential funding and services in the state. Small flags will be planted in the Capitol lawn, each one representing a handicapped person waiting for placement in a group home.

“This is not a Western New York problem and it’s not an Albany problem. It’s a statewide problem,” said Pat Muir, Family Advocates’ chairwoman. “The more families that are involved and advocating for a similar cause, the louder our voice will be.”

Raising awareness

Muir and others with developmentally disabled children want legislators to know about their troubles. “We want to increase awareness of how many are waiting,” she said. “There are over 12,000 people with intellectual and developmental disabilities on the New York residential registry — 4,000 of those individuals are in critical need.”

Allison, Kelly and Marci all spend time in “dayhab” programs run by the Center for Disability Services in Albany, and Allie and Kelly have part-time jobs — as an office aid and supermarket bagging clerk, respectively. Allie and Kelly read at a second-grade level; Marci reads at a kindergarten level.

Parents like Susan and Jim Nevins have lived with the emotional and physical challenges that come with raising a daughter with special needs. They’re worried what will happen when they’re too old to handle tasks that are already harder than when they were in their 30s and 40s.

“Grabbing that wheelchair in and out of the car all the time, it’s hard now at our age,” said Jim Nevins, 61. “I can’t imagine what it’s going to be like in 10 years.”

“Here’s the bottom line,” said Susan Nevins, 63. “We’re all getting older. Our other children move on. They leave the house at 18, they have a social life, they go to college, they become independent. They have apartments, they live with friends, they have girlfriends and boyfriends. They get married. They have children.

“Our daughters do not have that; they never will. A huge part of this is to give them the same opportunities that all other people have in life.”

Quality of life

A four-person home would fit the National Council on Disability’s definition of a non-institutional setting, the kind of place that offers “a higher quality of life,” according to the council’s statement on deinstitutionalization — a federal trend in which large, hospital-style homes for the disabled are being closed. The O.D. Heck Developmental Center in Niskayuna will close next spring.

Nevins and her friends Rusty Kindlon and Linda Karins — mothers to Kelly and Marci — have been trying to find suitable placement for their daughters since 2005, back when the state was still buying and renovating houses, and staffing them with caregivers. After multiple meetings over two years, they had a home approved for their daughters.

“We were all excited,” Susan Nevins said. “We were going out shopping for housewares.” Then came an email saying the budget had been cut and there would be no house, and no move toward independence.

“We were devastated, yes,” said Kindlon, 60, who lives with her daughter in Guilderland. “But our devastation was multiplied by watching what our daughters went through. Try to explain to developmentally disabled girls that it’s not going to happen, you’re not going to live with your friends.”

The new home also would have meant freedom for the young women, but also for their parents.

“I know this sounds very selfish,” Susan Nevins said. “We were approaching at that point our late 50s, early 60s, you’d never go out without somebody coming to the house, making arrangements in advance.”

‘Portable’ funds

The state’s plan for helping disabled people includes “Consolidated Supports and Services” — funding for families to design and manage services themselves.

“With assistance from a financial management services agency, CSS participants control their own individualized, portable CSS budgets, and may choose to hire and manage their own staff supports,” the Office for People With Developmental Disabilities says on its website.

Jennifer M. O’Sullivan, spokeswoman for the OPWDD, said in an email response to questions that if an individual is eligible for services and does not have an immediate need for residential placement, Developmental Disabilities will help them and family members plan services.

O’Sullivan, who declined a request for a telephone interview, said OPWDD does not have a waiting list of people in need of residential services.

O’Sullivan also said development of new certified residential and day service places “will be considered if existing opportunities are unable to meet the needs of the people that we serve.”

Jim Nevins believes the state just wants families to pick up the staffing slack. That might not be feasible in the long run, he said, wondering aloud if his 7-year-old niece would be willing to care for Allie in 30 years.

Nevins said Allie and her friends recently were offered space in a group home, but it wasn’t a good fit. It had stairs — a challenge for Allie — and men and women in the facility.

He added that the existing state system “will work for a few of the highly functioning disabled people where they can go to an apartment and may be checked on periodically, but most of the clients in the state need that old group home model.”

No relief in sight

Both Rusty Kindlon and Linda Karins, 61, say their daughters face long waits for placement in group homes. If the situation remains the same in 20 years, Karins said, “She will either still be living with a very aged mother or unfortunately, her brothers or sisters are going to have to step up.

“Her brothers and sisters love her, there’s no doubt in my mind,” Karins said. But should they be responsible for her in 20 or 30 years?

Kindlon said she and her friends accepted long ago that people in their children’s lives would be paid to care for them. She wants the state to treat caregivers fairly.

“It’s important those people be compensated in a way that’s commensurate with the responsibility we’re giving them,” Kindlon said. “The house itself ... really isn’t the problem. Houses can be purchased one way or another. It’s the staffing that has been the huge stumbling block for us all along. They do need that level of available care.”

Kindlon had hoped the three friends could stay together.

“Kelly doesn’t have the language skills that Allie has, so Allie will jump in and advocate for Kelly,” Kindlon said. “Kelly watches out for Allie — ‘Allie can’t do those steps, she needs a wheelchair if we go there.’ They constantly advocate for each other.”

Karins said she’s written political leaders, hoping for help and advocacy for developmentally disabled placement. While Sen. Neil D. Breslin (D-Delmar) made some telephone calls on her behalf, others were not as encouraging.

“The responses I got, if I got responses, were pretty much ‘I understand you have a need, but you have to understand budgetary issues,’ ” Karins said.

While parents talked in one room, the three young women laughed and talked about their futures in another.

“I’ve known Allie since kindergarten, I’ve known Marci since high school,” said Kelly Kindlon. “It’s time ... I’d miss my mom, but I want to be with my friends and hang out.”

Reach Gazette reporter Jeff Wilkin at 395-3124 or at wilkin@dailygazette.com.

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