Monica Yant Kinney: Corbett cuts hurt the mentally handicapped

Marian Zlotnikoff with son Steven Schwartzas an infant. She now cannot care for him.
Marian Zlotnikoff with son Steven Schwartzas an infant. She now cannot care for him.
Posted: June 28, 2012

In May, a 49-year-old Northeast Philadelphia man arrived at Jefferson Hospital with an infected toe.

Steven Schwartz, a diabetic, had already lost one digit and part of an arm. He may need a third amputation, a routine operation complicated by the fact that Schwartz is severely autistic and mentally retarded. He's unable to communicate consent, only confusion.

The patient has scratched staff, hurled trays, and shocked nurses with nudity. When not yelling, he asks the same question of all he sees:

"I go home now?"

As doctors administer antibiotics, some of the brightest minds and biggest hearts in social service diagnose a more dire condition: Steven Schwartz has nowhere to go.

He lived until recently with his elderly mother, whose own health and mental state are deteriorating. Both she and he require professional intervention to safely occupy the family home. But 15,000 intellectually disabled Pennsylvanians, including 3,000 in Philadelphia, already languish on waiting lists for such services.

Rate cuts recently imposed by Gov. Corbett have already resulted in the closure of emergency respite homes where Schwartz could have gone to avoid far costlier, and unnecessary, hospitalization.

As the budget battle intensifies this week in Harrisburg, Corbett is seeking 10 percent cuts in aid for the intellectually disabled. Beyond that $84 million in lost funding, he wants to radically overhaul how counties help the vulnerable.

If Corbett succeeds, the cost-conscious conservative will have inadvertently set up people like Schwartz to drain even more tax dollars.

If he can't receive modest assistance ($15,000) allowing him to reside with his mother or more ($50,000 to $100,000) for shared living or a group home, Schwartz is legally entitled to be placed in an intermediate-care facility or state institution - the highest-priced options, which can run $250,000 a year.

"Gov. Corbett says there's no money, but [Schwartz's hospitalization] is 24/7 care paid for by the same government," notes Emilio Pacheco, Schwartz's frustrated advocate at the nonprofit group Vision for Equality.

"Steven," he sighs, "is a hostage in the hospital."

Doing nothing at home

Born in 1962, Schwartz was diagnosed in an era without inclusion programs or high-tech communication devices. He spent his teen years at a special-needs school in Elwyn. At 21, as per the law, he was back home on his own.

Marian Zlotnikoff sought vocational training for her son, but his inability to communicate and erratic behavior limited his options.

"There were quite a few years," she recalls, "where we just sat at home with absolutely nothing for him to do."

Zlotnikoff is 76, a widow, and, by her own account, a recluse whose "mental state is terrible." On a day of relative clarity, she invited me to see what pains her to admit:

"Steven can't come back here. I can't even check his blood sugar. It's too dangerous."

The musty rowhouse has mice and rats, little furniture, and a basement filled with trash. Zlotnikoff and her 75-year-old sister, Shirley Cohen, tell me they have bladder problems, are afraid to cook, and forget to eat. They have no friends and rarely venture out of the house.

"The living conditions here have really gone downhill," Zlotnikoff shares, ruefully. "I've let Steven down, I've let my sister down. I guess I didn't ask for enough help, and by the time I asked, it was too late."

A money crunch

Funding for people with intellectual disabilities flows from both the federal and state government to programs that aim to serve as many as possible at home or in community settings, since it's cheaper and families rarely want loved ones institutionalized.

Pennsylvania has frozen allocations despite a waiting list that swells each spring as 700 special-needs teens graduate from high school. And this year, seeking even greater efficiencies, Corbett proposed slashing funding and lumping aid for a half-dozen needy groups into a single Human Services Block Grant.

The governor believes this will give local officials flexibility and incentives to spend wisely. Advocates say vulnerable people will invariably lose, since counties could decide, for example, to direct funds to drug and alcohol treatment and zero out services for mental health.

In Philadelphia, the families of 2,000 intellectually disabled people - some receiving just $500 in relief care a year so they can go to the grocery or a doctor - face the loss of a lifeline.

"We're always underfunded," notes Marianne Roche, special projects manager with the city office of Intellectual Disability Services, "but this is an abuse of what a commonwealth is supposed to be."

Even Republican legislators like Bucks County Rep. Gene DiGirolamo question Corbett's motives: "$673 million is a lot of money to risk in an untested model."

A patient's predicament

I got a glimpse of Schwartz in his room at Jefferson, but he cannot consent to an interview, and hospital lawyers would not let doctors comment on his predicament.

Pacheco attends care team meetings and praises Jefferson staff for its work with such a "high-maintenance" patient.

"He's basically living there, but they cannot justify keeping him forever."

Pacheco has struck out with every service provider he knows.

"Let me tell you what's going to happen," he predicts. "Steven will have the surgery. He'll be transferred to a rehab for a couple weeks. When the money runs out, he ends up on the street. He'll be taken to a shelter or an institution. That's what's going to happen."

Back in Northeast Philadelphia, Zlotnikoff can't comprehend how much she saved the state in decades of caring for her son herself, or how much he's costing taxpayers now. But she knows she can't take him back without help. Lost in her own mind, she can't even get herself to the hospital to visit him.

Contact Monica Yant Kinney at 215-854-4670, or @myantkinney on Twitter.

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