Over a hundred protestors from the elderly and disability communities crowded in the cold on March 7 in front of Governor Cuomo’s New York offices. Wearing orange t-shirts that read “#SAVECDPA,” they chanted those letters aloud, led by a few bullhorn-wielding organizers. Protestors ranged in age, race and ability, and many operated power wheelchairs.
The crowd was protesting proposed cuts of up to 17 percent to the popular CDPAP program and new regulations that would wipe away the majority of companies that manage staff and payroll for the program.
Among those present was Iffat Mahmud Khan, a Bronx resident who relies on two CDPAP-funded aides for daily help.
“Any regular person can get up with no assistance and it’s not a problem,” she said of the program. “So why shouldn’t disabled people have the same opportunities and rights as someone else?”
Governor Cuomo’s executive budget proposes large cuts to a Medicaid program that allows elderly and disabled people to manage home-health aides and avoid institutionalization. The program, called Consumer Directed Personal Care, or CDPAP, allows New Yorkers who need personal care for daily tasks to remain in their homes and select health aides to care for them.
The Cuomo budget proposes a reduction in the number of “fiscal intermediaries” of Fis, the payroll companies that handle billing and administrative duties, in some cases acting as a guide for the consumer in the process. It additionally proposes 17 percent cut to the program overall, although money is earmarked to compensate FIs for the state’s minimum wage increase to $15, which will impact many personal aides.
Bryan O’Malley, director of CDPAANYS, the trade group that represents many fiscal intermediaries, or FI’s, estimates the proposed changes would result in a 90 percent cut in the number of FIs, from over 600 to about 60.
City Limits reached out to the state for confirmation on O’Malley’s estimate. A Department of the Budget spokesperson neither confirmed nor denied the number, saying instead that the governor’s budget “does not set a specific limit on the number of organizations that can provide fiscal intermediary services.”
The state claims the proposed cuts will not result in reduced hours or enrollment in the program.
For those who want to hire home caregivers through the program, fiscal intermediaries are crucial. The FI handles all payroll and provides guidance to the client receiving or managing personal aides. Some FIs are primarily home-healthcare companies that offer the additional service for those enrolled in CDPAP, while others are companies that operate exclusively as fiscal intermediaries. Hundreds of FI’s have sprung up across the state since 2012,when the program transitioned from city and county-administered services to private insurance plans. Many FIs specialized services, catering directly to a specific disability or to a linguistic or cultural group.
A crack down on ‘bad actors’
In 2011, Cuomo assembled a Medicaid Redesign Team to develop a policy map for reducing fraud and misspending in the state’s Medicaid programs. Among the changes proposed was MRT90, a proposal to change the state’s Consumer Directed Personal Assistance Program by mandating enrollment in private insurance plans, called Managed Long Term Care Plans. Some of these insurance plans existed prior to the change, but their use was optional.
But regulation was threadbare in the new system, and problems inevitably arose. Many MLTCs, which received a flat per-enrollee fee, low-balled the needs of those receiving care in order to devote fewer staff hours to their care and boost company earnings. And over the following six years, the program became cluttered by providers operating with little quality control, a point advocates and state officials seem to agree on. Many fiscal intermediaries and Managed Long Term Care Plans sprang up, some of which were not offering consumers the range of services they were intended to.
“You wound up with a new Wild West forming,” O’Malley says of the state of the industry.
By late 2018, over 600 fiscal intermediaries existed across New York State, up from 58 when the MLTC changeover began in 2012. Some were staffing agencies sending in their own home health aides—not permitted under the program—but sneaking through because CDPAP had no clear oversight process.
CDPAANYS, the trade group, had pushed from the beginning for the Fiscal Intermediary industry to be regulated, O’Malley says, but the state showed little interest.
“You know there might be a problem when a trade group is yelling, ‘Please regulate us,'” he says.
The group pushed for a bill that would require FIs to be licensed by the DOH commissioner. It passed the Assembly and Senate in 2015 but was vetoed by the governor, at the request of the Department of Health.
In 2017, however, DOH acknowledged there were problems, and the bill creating a certification process was passed in the state budget. In 2018, the state began collecting applications online, and 565 FI’s submitted them, according to a list on DOH’s website.
A drastic shift?
The existing process, which would be discontinued under the governor’s new proposal, involves a 19-page applicationthat DOH made available on its website. There is no in-person evaluation or application fee, making it easy for many to apply.
But the governor’s proposed budget skips this certification altogether. It would instead drastically cut down the amount of fiscal intermediaries through a bidding process controlled by the DOH commissioner, the prerequisites for which discount the vast majority of FIs in operation from applying. According to the proposal, only FIs that are assisted living centers and FI’s that were contracted before January 1, 2012 may submit a bid.
Advocates say it’s a drastic shift that could cause chaos for consumers and for the FIs remaining in the system.
“Mass execution is not the best way to achieve (regulation),” O’Malley says. “They’re abandoning that process they’ve invested two years of state resources in for this more draconian process that has no transparency.”
Among the FI’s that filled out the application was Consumer Directed Choices, an Albany-based FI. CEO Elizabeth Martin says the company never received an approval or denial. She supports the certification process and believes it could weed out less scrupulous FIs.
“I don’t want an FI not doing this right,” she says. “This program is awesome. The last thing I want is to ruin its integrity.” Martin, who also worries that the additional 17 percent funding cut in the budget, which would reduce her $33 million operating budget by $4 million, would hobble their existing services. She hopes that the state will sit down to discuss the budget with FIs before a final budget is reached in April.
FIs’ complex role
Martin and others express concern that the state doesn’t understand the role of fiscal intermediaries, which would be altered dramatically if the system was collapsed to less than 60 statewide.
Under DOH guidelines, the approved role of FIs include payroll processing for home-health aides and monitoring the ability of the client (or the person appointed to manage aides on their behalf) to remain in the program. FI’s aren’t permitted to directly supervise or terminate the services of any of the aides, although they can recruit and hire some aides.
Martin says that good FIs work closely with clients and guide them through the confusing CDPAP process. When someone is disenrolled from Medicaid, for instance, they reach out to the plan, to the state, and to their clients to see if the problem can be resolved and to walk them through the process.
And other FIs provide mentorship, workshops, and guidance for clients on how to train their aides, though they are not permitted to home health aides themselves.
“I don’t know if people who are making some of these proposals truly understand,” Martin says of the services FIs provide.
Consumer Directed Choices, Martin’s company, has 940 clients across 11 counties around Albany. In turn, those clients hire about 2,300 personal aides, for whom the company provides payroll services. The recipients of care range in age from infants (whose parents have been appointed as designated representatives, in charge of hiring and supervising aides), to centenarians. The overall age of the clients she serves has been trending higher, she says, and is now 62.
The medical issues they deal with range from developmental disabilities, neuromuscular issues, spinal cord and traumatic brain injuries, as well as age-related disabilities like dementia. The majority of clients are self-directing and fewer than half have a designated representative.
FIs also provide cultural and linguistic competence, which would be diminished if the number were to shrink.
“Certain FI’s specify in care for their communities,” says Allison Cook, New York Policy Manager for PHI, the Paraprofessional Healthcare Institute. “We’re concerned with this sudden potential shift and drastic reduction that some of those very important supports might disappear.” Because many FIs provide guidance through the complex system, the dissolution of intermediaries that serve Spanish language communities, for instance, would hinder accessibility for some.
There’s an additional concern that the speedy pace with which the budget proposes these changes—FI’s could be removed from the program as early as July 1st – would lead to a bottleneck in which a dwindled list of companies must absorb a large group of consumers.
O’Malley estimates that of the close to 70,000 CDPAP consumers statewide, 50,000 to 60,000 would be transitioned to a new intermediary due to the closures. It takes an FI three to six months on average to begin collecting revenue from insurance plans, the trade group estimates, which means companies rely on existing assets to bridge the gap until payment. But O’Malley says even the largest FIs would be unable to take thousands of new consumers in a short amount of time while also meeting payroll.
Martin, whose company is among the largest statewide, says the company would need to scale up very fast and is currently working on disaster plans.
A shortage of workers
A spokesperson for the state’s Department of the Budget told City Limits that the governor’s proposal won’t reduce enrollees or hours of care, saying, “The Executive Budget maintains the state’s full commitment to the Consumer Directed Personal Assistance Program. The more than 70,000 self-directing consumers who employ their own aide, including in some cases family members and friends, will continue to receive services as they do today without any reduction in care, with no change in cost, and the program will continue to be available as it is today to new consumers.”
CDPAANYS and others contest this, pointing out that the projected $75 million in cost-savings to the state – and the additional $75 million in Medicaid matching funds—can not be achieved merely by cutting the administrative cuts of FI’s.
“There’s not that much administrative overhead built into the system,” O’Malley says. “Where are we milking more money out of the system in administrative costs unless it is reduction in services?”
Cuomo has been trying to reduce the amount of enrollees in CDPAP for years in an effort to shrink Medicaid payments, advocates say. While total Medicaid spending statewide has grown from $54 billion to $70 billion since 2011, that growth happened at half the speed than occurred nationally. Most of this growth is the result of new enrollees under the federal Affordable Care Act (ACA).
Cuomo’s Medicaid Redesign Team has mostly succeeded in cutting down per enrollee Medicaid costs,which decreased from $11,400 to $9,900 since 2011. Cuomo is under additional pressure to reign in per enrollee costs due to federal threats to the ACA this year.
Before this year’s proposed cuts to CDPAP and fiscal intermediaries, the state tried other methods to trim the number of FI’s. Last year, for instance, the governor’s budget proposed restrictions on advertising for FI’sthat were ostensibly intended to root out fraud, but which advocates say would have had the effect of eliminating ads altogether.
Reducing FI’s and potentially making it more difficult for people to enroll in CDPAP would be dangerous, FI proponents say. There is a statewide home health aide shortage, especially felt in upstate New York. Allison Cook of PHI says that there’s currently not enough support for CDPAP to make up for the home health aide shortage and that more disruption will only make the workforce shortage worse.
This means that for many clients, especially those who live upstate where FIs are less densely packed, there will be few available options for those who need care.
“Workers are doing this work because they care,” Cook says. “Not only do they need the money, to make ends meet, but no one would do this job that’s physically and emotionally demanding if they didn’t feel driven to provide this care,” she says. “I think this budget has not thought about innovative ways to invest in the workforce.”
A form of independence
Among those at the rally was Anastasia Samoza, the City Council’s first Community Liaison for Disability, Civil and Human Rights.Samoza, a former Hillary Clinton surrogate who spoke at the 2016 Democratic National Convention, is herself reliant on CDPAP. Anastasia and her twin sister Alba have cerebal palsy and spastic quadriplegia and have been using the program since they were 12. Their mother, Mary Samoza, says they were the first children ever enrolled.
Anastasia says she and her sister rely on aides for all of of their activities of daily living. Without the program, she says, she would not be able to do her work for the city.
“It would take me from a person who lives a happy healthy productive life in my community, where I’m able to work and contribute to society, to making me completely dependent on the city and state again,” she says.
Iffat Mahmud Khan, who has been using CDPAP for eight years, feels similarly.
“We’re part of the community and we don’t want to be segregated out of our community,” she says.
Some feel the budget proposal is a step back at a time when the state should thinking about ways to invest more in aging and disabled New Yorkers.
Rachel McCollough is Co-Campaign Director for the New York Caring Majority, an umbrella coalition of advocates whose members include CDPAANYS, PHI as well as the National Domestic Workers Alliance. The group is advocating for universal homecare, which McCollough believes would not only grant autonomy and dignity to the disabled but will become important as the aging population booms.
“It’s a program that centers self-determination,” she says of CDPAP, “and is the kind of thing that could serve any of us and all of us who value our ability to make choices about our own lives as we age.”