MALTA — When surgery to remove a deadly tumor in John Shelffo’s brain caused him to suffer a stroke and brain swelling so severe he needed half his skull sawed off, the then-22-year-old was left with an array of devastating disabilities.
He developed ataxia, which caused him to lose movement in his entire left side and much of the rest of his body. He couldn’t walk, he couldn’t feed himself, he couldn’t bathe himself or go to the bathroom alone. He lost vision in one eye, hearing in one ear, and had difficulty talking.
“Physically, he might be a mess,” his father Jim Shelffo said recently from inside their Malta home. “But cognitively, he’s 100 percent there. He’s the same kid as before.”
Which is why, Shelffo explained, it was so devastating for the family to put him in a nursing home after his time in the hospital. He was there for seven months, with no stimulation but for a tiny TV he couldn’t see and one hour a day spent outside his room in therapy.
“The rest of the time he was just sitting in his room doing absolutely nothing,” Jim said.
In July 2011 the Shelffos were connected with Consumer Directed Choices, an Albany nonprofit that facilitates care for the disabled through the state’s Consumer Directed Personal Assistance Program. The program allowed John to receive care from the comfort of his home, and gave his father the authority to hire and fire personal care aides of his own choosing, including friends and family should he choose to.
As a working, single dad with no other family around, however, Jim ultimately hire aides recommended to him by people he trusted. Soon enough, the high blood pressure John experienced from the stress of living in a nursing home disappeared, he said.
“You just feel more relaxed when you’re home,” said the now 33-year-old John, as he sat in a recliner on a recent weekday, a wheelchair and iPad for entertainment by his side, and family dogs leaping with excitement at the presence of guests.
A booming industry
The future of the Medicaid-funded program that gave John and his dad peace of mind is in a state of uncertainty, as New York grapples with a looming $6.1 billion deficit fueled by what many say is unsustainable growth in the state’s managed long-term care sector.
Under managed long term care, the state contracts with private health plans to manage services for people with chronic illnesses and disabilities. Paid for by Medicaid, the intent is to divert people from high-cost nursing homes to less costly in-home care that keeps them in their communities.
In 2012, the state mandated the transition and enrollment of certain community-based services into managed long term care plans. From 2013 to 2019, spending in the sector ballooned by 301 percent.
In budget materials released last week, the Cuomo administration said that growth was driven largely by increased use of the CDPAP program relied on by the Shelffos. Unlike traditional home care delivered through licensed home care agencies, consumer-directed care is far more flexible and enables beneficiaries to mostly hire anyone they want to provide in-home care, including family and friends.
And that’s an attractive concept to some people.
“We know the people that are coming into our house,” Jim Shelffo said. “We hire them, they’re a referral or we know them somehow, versus complete strangers that come into my house and don’t know anything about my son or his interests.”
That aspect also makes CDPAP uniquely vulnerable to misuse, said Bill Hammond, director of health policy for the Empire Center, a fiscally conservative think tank that has tracked the state’s ballooning Medicaid costs.
“If there’s an agency that’s supposed to be sending someone to your house and they don’t show up or they do a lousy job, you can call the agency and complain,” he said. “If it’s your grandson, you’re not going to complain.”
Potentially vulnerable
In the aftermath of the switch to managed long term care, advertisements began popping up in subways telling people they could get paid to take care of their relatives, Hammond said. Enrollment consequently spiked, and health plans began competing for consumers.
The federal Office of the Inspector General has issued numerous reports identifying New York’s Medicaid-funded personal care services as vulnerable to waste, fraud and abuse. In 2018, it announced it had reviewed the CDPAP program in particular and found untimely or missing documentation for claimed services, reimbursements for services that were not authorized, and a general failure by the state to effectively monitor the program.
“It would be very difficult to police this,” Hammond said. “It would mean knocking on the doors of hundreds of people to see if the caregiver is in the place they say they’ll be at the time they say they’ll be.”
As of June 2019, the program had an estimated 111,000 aides serving some 74,000 consumers, according to Bryan O’Malley, executive director of the Consumer Directed Personal Assistance Association of New York State.
O'Malley admits there are a number of “program integrity” issues within CDPAP. The runaway growth in the number of fiscal intermediaries — agencies that administer pay and benefits for home care workers hired by consumers — is a big one, he said.
State Medicaid Director Donna Frescatore said last year there were roughly 600 intermediaries now operating in the state. Other states with similar programs have only a handful, Hammond said, and they also impose limits on the number of recipients and hours authorized through the program.
“We’ve always maintained that a large number of the agencies need to be curtailed,” said O’Malley. “We don’t think a number of these agencies really know what they’re doing in administering the program.”
The state Department of Health is currently trying to weed out the excess. In 2019 it issued a Request for Offers requiring all fiscal intermediaries in the state to compete apply to remain in the program. Applications are due March 2, and the department has stated its intent is “to award the fewest number of contracts that preserve statewide access and consumer choice.”
Exactly how many contracts that means they have not said. On Friday, the department also declined to say how many groups have submitted applications so far.
Spokeswoman Erin Silk said applicants will be assigned a technical score based on various criteria, including ability to appropriately serve program recipients, geographic distribution that ensures access in rural and underserved areas, demonstrated cultural and language competencies, ability to provide timely consumer assistance, experience serving individuals with disabilities, and demonstrated compliance with federal and state laws and regulations.
Misaligned incentives
Health plans and program observers have also suggested the state’s reimbursement structure, pays intermediaries for each hour of care provided under the program, incentivizes intermediaries to seek out and encourage “higher-utilizing” members.
“The department last year maintained that (fiscal intermediaries), particularly those in managed care, were reaping very, very large administrative payments and profit margins off those payments,” O’Malley said.
The health department responded by pushing through a per-member, per-month rate scheme last year, but received blowback from advocates who said the change would have bankrupt the intermediaries. They sued and won, after a judge said the state failed to follow its own rules for issuing the rate change.
The state is still pursuing the rate change, however, and resubmitted draft regulations late last year.
O’Malley said fiscal intermediaries are open to the implementation of a minimum spending ratio, in which intermediaries could only spend 15 percent of their revenues on administration and must leave the rest to direct care.
His association last month shared $175 million worth of savings proposals with state budget officials, he said, including one that would formalize the process for disenrolling members from the program when it becomes clear they’ve become too sick to self-direct their own care.
“Right now what we see is, rather than doing an assessment and referring them to the proper care, health plans just keep cycling them through different FIs until they find someone who will take the case,” O’Malley said. “That’s a bad practice, and it can present a dangerous situation for the consumer.”
Hammond said program provisions that make it easy for consumers to switch plans also incentivize health plans to keep consumers happy.
“If you’re a plan and your client is saying I want more hours, if you say no, you run the risk they’ll switch to another plan,” he said.
Health plans say they have limited ability to manage program growth.
They have proposed a handful of savings ideas, as well, including a per-member, per-month rate structure; a reduction in fiscal intermediaries to just eight statewide; and a cap of 25 on the number of hours consumers can receive in one week week, with exceptions for “members who have certain conditions that have historically been well-served by the...program, such as individuals with paraplegia or quadriplegia.”
Shelffo, who owns a restaurant currently but spent years as a “fund management specialist” rooting out fraud and waste in the military, said he knows there are scams and fraud in the state’s Medicaid program. But he said an overreaction by the governor to rein in costs could devastate people who really need its programs.
He and others receiving care through CDPAP are demanding a seat at the Medicaid Redesign Team that Cuomo has tasked with finding savings. They have until April 1, the start of the next fiscal year, to identify $2.5 billion worth of savings, Cuomo announced last week.
“This program means the world to us,” Shelffo said. “Without it, I’m a nervous guy as it is, I wouldn’t know who’s in my house, are they abusing my son, what’s going on. I’ve had to make some sacrifices having him here, but he’s my kid. It’s worth it.”
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As state eyes deficit, New York's popular home care program fears cuts - Times Union
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