Alliance Note: The late push to implement changes to New York’s Consumer Directed Personal Assistance Program (CDPAP), a program which allows people with disabilities or long-term medical needs choose their home care workers, led the legislature to reduce the number of fiscal intermediaries for the program. Now the program will have one statewide entity as the fiscal intermediary, but this entity is required to subcontract with the eleven existing Independent Living Centers after successful advocacy from the Independent Living Community.
While we are happy to see the ILC role in administering the program has been preserved, there are persisting concerns with the plan to transition the program from having hundreds of other intermediaries to just one and how this will affect the nearly 250,000 New Yorkers who benefit from it. A consolidation of intermediaries for a similar home-care program in Massachusetts led to delayed payments and workers leaving, putting the beneficiaries of the program at risk of losing trusted workers or not receiving services at all.
While it is important to reduce fraud and abuse in our care system, attempts to do so should not jeopardize the continuity of care for people who have gotten their lives back due to programs like CDPAP. Much more must be done to protect the beneficiaries of the program while the state looks to root out fraud from some intermediaries. Ensuring that any transition does not harm people using the program and any chosen intermediaries have extensive knowledge and understanding of how to serve New Yorker’s diverse, unique needs must be New York State’s priority because people’s lives depend on this program. See below for more information.
Home-Care Program for 250,000 New Yorkers Faces Upheaval
By Amanda Glodowski | Crain’s New York Business | July 10, 2024
A popular program that lets people choose and train their own caregivers has grown at an astonishing rate, blowing a multi-billion dollar hole in the state budget and leaving officials, including Gov. Kathy Hochul, with a big dilemma.
Spending on the Consumer Directed Personal Assistance Program, or CDPAP, has mushroomed by 4,055% since 2014, when it cost the state just $219 million, according to data from the federal Centers for Medicare & Medicaid Services. Spending reached $9.1 billion in 2023.
The growth stems in part from a 2015 relaxation of rules for who qualifies for the program that opened the floodgates and made it more vulnerable to fraud. There are now nearly 300,000 people working in New York’s home health care services sector, according to data from the state Department of Labor. That’s a 173% increase from 2014, when there was an average of about 109,000 workers, a boom fueled mostly by the low-paying, government-funded jobs provided by the program.
The largesse has also fueled a cottage industry of as many as 700 middlemen companies that facilitate the program in exchange for a cut of the caregiver’s earnings.
Now, Hochul’s administration is trying to stanch spending. In the coming months, the state will move to reduce the number of middlemen companies to a single contractor. Hochul has said the change will “allow us to start putting controls and guardrails in place for what has historically been a very underregulated program.”
“That’s how we ensure that the people who really need it get the best quality care while limiting the waste, fraud and abuse,” she said.
However, it’s unclear how pending changes will affect the 250,000 New Yorkers who have grown to rely on the program for care. The program began as a way to empower individuals with chronic health conditions and disabilities to have control over their care and avoid institutionalization.
“It kind of flew under the radar for a while,” said Bill Hammond, senior policy fellow at conservative think tank The Empire Center. “Until the dollars started piling up.”
Newfound Freedom
There’s no question that there are success stories for the program. Jose Hernandez was 15 when he dove into the water at City Island in the Bronx. It was much shallower than he thought, and he broke his neck. As a result, Hernandez, now 44, has lived most of his life as a quadriplegic, unable to use his arms or legs.
Hernandez would not be able to care for himself or his child without a rotating staff of about five “personal assistants” — home care workers he finds and trains himself. Each day, one helps him with his bowel and bladder routine, then with getting dressed and into his chair.
The aides’ help is made possible through CDPAP. Hernandez discovered the program nearly two decades ago, after years of going through traditional home health agencies, which sent him an array of “random” people, he said, many of whom struggled to handle such a difficult case. The constant change in caretakers prohibited Hernandez from establishing a routine; he would have to bring each new worker up to speed on his many needs. Sometimes it would take two-and-a-half hours to get ready in the morning.
“It was just constantly a new person every day,” Hernandez said. “That’s exhausting.”
The program is set up so that Hernandez can be a greater master of his own destiny, a luxury he rarely gets to enjoy. He can choose and train personal assistants to care for him how he wants and needs. The Medicaid-funded program intends to allow those in need of care, such as individuals with disabilities or the elderly, to employ home health workers of their choosing. Created in 1995, the program took off in 2015 when New York relaxed its rules to include most family members as potential paid caregivers.
“It gave me a level of freedom that I never experienced before,” he said.
Popular to a fault
People like Hernandez can employ almost anyone except a spouse. A parent caring for a child under the age of 21 also would not qualify under New York’s rules.
There’s no formal training required, and caregivers are generally compensated less than a trained home health aide. Personal assistants in the city make $18.55 per hour, and outside of the city they make $17.55. If they have another job, they aren’t required to give it up, and they are eligible for overtime, paid time off and benefits.
Supporters say it’s an attractive arrangement that grants agency to vulnerable people while compensating the mostly female caregiving workforce.
New York’s aging population is one reason for CDPAP’s explosive growth, but policy changes are a more important contributor, according to a research report by Step Two Policy, a think tank founded by Paul Francis, former deputy secretary for health and human services under Gov. Andrew Cuomo.
The posters plastered on subway cars speak to a relaxation of rules that began in 2015. A typical ad reads, “We are hiring caregivers! Flexible hours, great benefits, PTO, holiday pay & more,” with some even touting sign-on bonuses.
That year, state officials expanded the universe of people who could receive personal care services, as well as those who could provide services under the program. The looser rules, combined with a 2017 “wage parity” provision — an hourly rate set at $4.07 above minimum wage in the city — were the two primary factors accelerating the growth of the program, according to a report by Step Two Policy.
The growth is by far the largest of any employment sector, according to James Parrott, director of economic and fiscal policies at The New School. He said the average annual wage is about $38,000.
“It really has been an independent force on its own,” he said.
The workforce, which reached 299,000 in May, outnumbers retail clerks and fast food workers combined, according to Hammond.
Costly and murky
Critics say the program’s spending is out of control, and that the industry supporting the program has been allowed to proliferate unchecked and with minimal oversight.
A 2018 federal audit from the Department of Health and Human Services found that New York billed Medicaid nearly $75 million in fraudulent CDPAP claims from 2012 to 2016.
“New York’s lack of effective monitoring of the CDPAP leaves the program vulnerable to misuse of Federal funds and could potentially place beneficiaries at risk of harm,” the audit reads, noting that it was conducted because previous reviews identified personal care services in New York as vulnerable to abuse.
The audit pinned much of the blame on the middlemen companies, which manage payroll and help participants navigate the program; in exchange, they receive a share of the funding, according to Bryan O’Malley, the executive director of the Consumer Directed Personal Assistance Association of New York State, an industry group that supports the program.
As the program has swelled, the number of middlemen companies have also grown across the state to meet demand. There were just 68 such companies in 2013, according to O’Malley.
Now, they are a target of regulators.
The state estimates there are as many as 700 companies managing the administration of the program. Late in this year’s budget process, in an effort to save money and increase transparency, the governor proposed streamlining the administration to just one company. The move is expected to save $200 million in the first year and $500 million after.
Last month, the state released a request for proposals for a sole company to administer the program, and the race is on. Public Partnerships, a firm that operates in more than a dozen states and is expected to compete for the contract, recently inked a $6,500 monthly contract with lobbying firm Cozen O’Connor for “strategic advice and business development,” according to state records.
Maximus, a Reston, Virginia-based health care company that focuses on government services and brings in more than $4 billion in revenue annually, is another organization potentially in the running for the contract. It operates in 13 states.
There’s a case to be made for reducing CDPAP, said Hammond of The Empire Center.
“Where do you draw the line? There’s a lot of unpaid caregiving going on,” he said. “But traditionally we don’t think of all interactions between family members as labor. We don’t pay parents for raising their children. There are an awful lot of families down through the ages who have taken care of their elderly relatives without expecting to get any money for it. So if we redefine all that activity, it’s going to get very expensive.”
Streamlining in Massachusetts
Massachusetts underwent a similar shift with its Personal Care Assistant program in 2022. The program is much smaller than New York’s, with a workforce of about 55,000 people serving 40,000 residents.
The program began in 1988 and has grown but not as quickly; eligibility remained limited to the disabled community. Massachusetts reduced the number of middlemen companies as a cost-cutting measure, but on a much smaller scale: The Bay State had just three providers compared to the hundreds in New York.
Chaos ensued as payments were delayed for thousands of caregivers due to administrative snags. In the days immediately following the switch, the state’s selected single organization, Tempus Health, wrote on its Facebook page that it had received 32,000 phone calls, according to The Boston Globe.
About 10% of workers missed payments when the change was enacted, which led to workers leaving, according to O’Malley. In New York, that would equate to about 25,000 consumers and 35,000 workers.
“That is an immediate health care crisis that is entirely avoidable because we have a system that works today,” he said.
Massachusetts Gov. Maura Healey’s budget proposal targeted the program again this year as a way to close a $950 million gap in MassHealth, the state’s version of Medicaid. The proposal says that only those who receive more than 10 hours of care per week would be eligible for the program.
In New York, applications to become the sole administrator for CDPAP are due by the beginning of August, and the contract is set to start on October 1st.
Hernandez is wary of the change. “I made a life for myself and I’m trying to make a life for my family,” he said. “Now I’m just scared.”
Group Launches Ad Blitz to Roll back Changes to NY Home Care Program
By Raga Justin | Times Union | July 4, 2024
ALBANY — A midsummer pressure campaign to roll back proposed changes to a popular home care program has triggered an aggressive multi-million-dollar lobbying blitz — but it’s unclear if state officials will pay attention.
The Alliance to Protect Home Care launched its advertisement campaign late last month in an attempt to reverse plans by Gov. Kathy Hochul’s administration to curtail spending within the Consumer Directed Personal Assistance Program, a Medicaid-funded health care model that allows people with disabilities or long-term medical needs to choose who they want to be their caretakers, including family members. Those caretakers are then reimbursed through federal and state dollars.
The program, beloved by numerous consumers, has also been criticized for its rapidly ballooning growth in recent years and has been blamed for fraud and uncontrolled spending at a time when Hochul and budget officials have attempted to reign in exorbitant health care costs.
In April, state lawmakers drastically changed the scope of the program at the last minute despite a surge of protests from so-called “fiscal intermediaries,” or companies who act as brokers between home care patients and health coverage programs like Medicaid.
Under the new rules, New York is now seeking to eliminate an entire group of fiscal intermediaries and instead use one administrative company to handle all the program’s logistics, which serves over 200,000 people in the state.
In numerous television and social media advertisements, the Alliance to Protect Home Care urges residents to “reject Albany’s plan to gut critical home care for older and disabled New Yorkers.”
Laura Cardwell, director of operations at the Consumer Directed Personal Assistance Association of New York State, which is spearheading the newly formed coalition, pointed to a recent report from the state comptroller’s office that deemed the contract bypassing pre-audit review as “problematic.”
“We’re very concerned that lives will be at risk as the move to a single statewide fiscal intermediary could create delays and disruptions in care from people falling through the cracks,” Cardwell said.
It’s unclear how many fiscal intermediaries exist in New York. Under the state’s new rules, most would be wiped out. A handful of independent living centers, which operate regionally as hubs for people with disabilities who use the program, were exempted from the overhaul as part of a compromise between lawmakers this past spring.
The ads may not be auspiciously timed: lawmakers left Albany in early June and are not scheduled to return for months. And the state Department of Health’s plans to onboard the statewide company overseeing the care program appear to be moving quickly; a project bid proposal released weeks ago cites an anticipated start date of Oct. 1.
But the Alliance to Protect Home Care contends the proposal is narrowly tailored to effectively exclude New York-based companies from assuming control. Instead, they’ve identified a handful of possible contenders elsewhere in the U.S. and have argued that a single out-of-state provider cannot adequately support New York’s diverse consumer population that relies on the program.
A statement from Hochul spokesman Sam Spokony doubled down on the administration’s “common sense reforms” to the program and did not respond to questions about whether they would consider altering those reforms to alleviate concerns from the Alliance to Protect Home Care.
“Our common sense reforms to CDPAP will protect the long-term viability of the program and ensure it continues playing an important role in providing direct care to New Yorkers at home,” Spokony said in a statement.
Assemblyman John T. McDonald, a Capital Region Democrat, said he received numerous auto-messages from the alliance last week; a pre-made format implores lawmakers “to rebuke this disastrous plan.”
McDonald said though he sympathized with the fiscal intermediary companies that now stand to lose their businesses, he does not anticipate that lawmakers will consider walking back the new rules.
“I don’t see this program rolled back in any way,” McDonald said, though he added there could be some adaptations made to the program down the line. “Why someone is spending millions for a rollback is beyond me.”
But the group has likely seen an opportunity to capitalize on what could be a delayed timeline, given the policy’s complexity, said Bill Hammond, a health care policy expert with the right-leaning think tank Empire Center for Public Policy.
It will likely be extraordinarily difficult to transition thousands of customers from over 600 fiscal intermediaries into one single overarching company in less than a year before New York’s current fiscal year ends, which serves as a deadline of sorts for the policy’s implementation.
Legal action to try and prevent the policy from taking hold is not off the table either, Hammond said.
“There’s a lot of doubt that the state can pull it off and there’s a lot of opportunity for a course correct,” Hammond said.
Group launches ad blitz to roll back changes to NY home care program