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Developmentally disabled adults face uncertainty as N.Y. changes Medicaid payments and deep federal cuts loom

Christine Barker, right, and Alissa Slade talk about the EEDA program with CEO Lisa Fertal and Matthew Kuriloff. Photos: Denise Civiletti

With elected officials and others arguing about the House Republican bill intended to repeal and replace the Affordable Care Act, some local residents who are dependent on Medicaid — and the nonprofit organization that serves them — are anxiously awaiting the outcome.

Christine Barker and Alissa Slade are two residents of a group home for developmentally disabled adults operated by East End Disability Associates in Manorville.

They rely on Medicaid for a lot more than doctor visits and prescription drugs.

That’s because their housing, supervision and assistance, various therapies, job training — a wide range of services — are all largely paid for by Medicaid.

“I rely on Medicaid for just about everything, I think,” said Slade, 23, who has autism spectrum disorder. “I am developmentally disabled.” Her resulting behavioral issues required several hospitalizations for psychiatric treatment before being placed with EEDA.

EEDA’s Matthew Kuriloff and Alissa Slade share a laugh.

The Riverhead-based organization provides housing in an “independent residential alternative” facility that’s supervised 24/7. It provides a day program, occupational and behavioral therapy and job training.

“I wouldn’t have any of that without Medicaid,” Slade said.

Barker, who has cerebral palsy, described in slow, halting speech the services — the lifestyle and freedom — the Medicaid program allows her: housing, physical therapy, medical treatment and more.

“I don’t know what I would do if I didn’t have Medicaid,” said Barker, 39.

Not many people in Washington are talking about altogether abolishing the 52-year old program initially intended as a safety net program for poor people. But hundreds of millions of dollars in cuts to Medicaid and fundamental changes to how the funds are distributed have been proposed and could be approved by the House of Representatives this week.

Much of the national debate and discussion has focused on the future of Medicaid programs expanded by 31 states under the Affordable Care Act and the shift in responsibility from the federal to state governments. But looming dramatic cuts to Medicaid will have profound impacts on programs like those run by East End Disability Associates, an organization that relies on Medicaid for 93 percent of its $16.5 million annual budget.

The two women seated at the round conference table in the cheerful downtown office of East End Disability Associates CEO Lisa Meyer Fertal Monday were worried. They spoke at length about their lives, their challenges, their dreams for their future as Fertal and Matthew Kuriloff, EEDA’s manager of development, advocacy and public relations listened quietly.

“Medicaid has given me the life I have now. I live independently. I have a job,” Barker said.

Deep cuts to federal Medicaid funding in New York — estimated today by Gov. Andrew Cuomo at $6.9 billion — combined with funding changes already underway in New York could be crippling for organizations like EEDA.

“These are two storms colliding,” Fertal said. Medicaid reform in New York is putting organizations that provide direct care to the developmentally disabled population into the “managed care” system, she said.

“The people we support aren’t sick. They shouldn’t be part of that system. In the treatment of physical illness, it’s possible to determine a range of fees,” Fertal said. “If you have a broken arm, these are the things you need to do to fix it. This is what these measures should cost. This is what we’ll pay,” she explained. “In this field, there’s great variance.”

Under the new system, instead of the state Medicaid system paying the organization for the various services it renders to an individual, the state will assess the individual and arrive at a flat-rate fee for that person’s care.

“It’s so hard to categorize people in this way — putting that assessment into the hands of a third-party,” Kuriloff added.

“Another problem is things change in people’s lives,” Fertal said. “What meets their needs one year may not meet their needs the next.”

Both Slade and Barker experienced life-changing events in the past year. Slade lost her father and Barker’s boyfriend, who had suffered an aneurysm and remained in a vegetative state, died in August. Her best friend broke her leg and had to be moved into a rehab center.

Christine Barker talks about what EEDA has meant to her.

“I got through these things because of the people in my house and EEDA. They become like your family,” Barker said. “They are my family.”

With the focus on reducing expenditures, Fertal said, “I’m concerned that there will be a return to a philosophical view of institutional care because it’s much cheaper.”

As it is, hers and other organizations like it, are struggling to be able to pay caregivers enough to retain them. And on top of managed care and additional cuts, New York’s $15 minimum wage law is increasing the nonprofit’s expenses.

“We’re just being squeezed from every angle,” Fertal said. “How are we going to be able to provide the same services with a lot less money?” Nonprofits like EEDA are “really getting hammered,” Fertal said. Nobody really knows what’s going to happen.

The uncertain future gnaws at both the providers and recipients of care.

Barker, who has been receiving service from EEDA since 2003, said “the people at East End don’t look at us as a disability. They look at us as a person.”

She described a childhood of being picked on at school for how she looked and spoke — and always feeling less valuable to her parents than her two sisters. “I didn’t have anyone to talk to growing up,” she said. She was withdrawn and quiet — very different from her outgoing and loquacious demeanor today.

“All that changed as soon as I came to East End, starting in their day-hab program,” Barker said. “Without Medicaid it wouldn’t have happened and I wouldn’t be here.”

Fertal, a registered nurse, founded EEDA in 1993. Her son Andrew had been diagnosed with autism and neurological impairments and she discovered the first-hand the lack of services that then existed on the East End. The organization has grown to one that today employs more than 475 people and serves more than 600 developmentally disabled adults.

Kuriloff began working for EEDA at a group home and has been a mentor and friend to both Slade and Barker. The work has become his calling, he said.

“People who come into this field find their own lives are improved and enriched by this work,” Kuriloff said, smiling at Slade and Barker.

Slade beamed back.

“If you let somebody with a disability in your life they can give you a lot,” she said. “If you let them.”

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Denise Civiletti
Denise is a veteran local reporter and editor, an attorney and former Riverhead Town councilwoman. Her work has been recognized with numerous awards, including a “writer of the year” award from the N.Y. Press Association in 2015. She is a founder, owner and co-publisher of this website. Email Denise.