For years, New York lawmakers have tried — and failed — to pass a law that would regulate assisted living to protect the state’s frailest elderly residents, including the thousands who suffer from dementia.
Since 1997, advocates and lawmakers in Albany have debated how to oversee the growing industry, with particular focus on getting unlicensed centers on the radar screen of the state Health Department.
Because many places are not required to register with the state, health officials say they may not even know they exist.
There is no federal oversight of the industry, but most states have passed laws over the past few years that define it for consumers and require certain protections. However, that’s not the case in New York, where, since 1999, at least three sets of bills targeting assisted living have failed.
Last year, three separate proposals inching toward passage never resulted in a law, though many say the effort was the closest the legislators had ever come.
The reasons for the failure were complicated. The adult home industry, which includes many homes that currently offer assisted living, believed that aspects of the proposals could potentially undercut their business, and the governor’s office had concerns about how the bill would impact the state budget.
Additionally, lobbyists said the issue was just one of many put off after the historic fight over last year’s state budget, when the legislature enacted its own spending plan over Gov. George Pataki’s objections in May.
So, in typical Albany gridlock fashion, the three parties negotiating — the Assembly, Senate and the governor — were unable to hammer out a final measure that would please everyone. The session ended June 20 without an assisted living law in place.
While assisted living falls into an ambiguously gray area between nursing and retirement home, the facilities serve mostly middle- to upper-class people who need assistance with the rhythms of daily life. But as the population has aged and its residents have become more frail and in need of more intense care, the laws haven’t kept pace.
The 2003 legislative proposals would have called for a uniform definition of assisted living that critics say is crucial to regulating the industry. Advocates for the elderly, lawmakers and health officials agree that without a clear definition, regulators and consumers have no baseline to compare services and fees.
Giving assisted living a unique designation would allow the state to create new rules and standards for the specific residents served by this growing industry, experts say. While many adult care facilities, including adult homes, are already licensed and regulated, the rules were written years ago for a different population.
Additionally, consumers would know where to turn if problems arise with medical care, or if their relative is suddenly evicted because he or she is no longer medically appropriate to live there.
National advocates say New York’s spotty regulation of the industry is shameful.
“New York has the dubious distinction of having the worst assisted living regulations in all the states,” said Karen Love, the founder of the National Consumer Consortium on Assisted Living. “It’s because they largely don’t exist.”
Lobbyists on the state level agree. “It’s unbelievable people can be paying this kind of money into an [assisted living] system that has no definition, no consumer protections and no regulation,” said Fred Griesbach, a lobbyist in Albany for AARP. He said passage of such a law has been among the group’s top priorities.
Legislation sponsors are frustrated as well. “We’re not talking rocket science here,” said Assemb. Steve Englebright (D-Setauket), who sponsored the Assembly’s version of the bill.
“I’m appalled that this has been kicking around while the need becomes increasingly apparent,” added Englebright, who is chairman of the Assembly committee on aging. “We have a quite robust growth industry, especially on Long Island, where these are becoming quite commonplace.”
Over the past three days, Newsday’s series on assisted living has documented hundreds of cases in which residents with dementia were endangered because their centers were neither prepared nor regulated to protect them. In many instances, the elderly and frail either wandered away, sometimes with fatal consequences, or were victims of inadequate medical care, violence from other residents with dementia, or theft.
As far as addressing the problems of those with dementia, last year’s failed proposals would have required that facilities give health officials a written description of the specialized dementia services they provide, including staff training, work experience and professional affiliations of workers serving people with such needs. Currently, the health department only offers unenforceable guidelines, issued in January, on how to deal with those who reside in special dementia units.
Additionally, Wayne Osten, the director of the health department’s office of health systems management, said the governor proposed more comprehensive assessments of potential residents, as well as ongoing reviews of residents who are accepted into assisted living to determine if residents are appropriate to stay there.
Medical experts have said frequent assessments are particularly important in dealing with residents with dementia, many of whom have progressive Alzheimer’s disease.
All parties agree that whatever assisted living law was to emerge would have numerous consumer safeguards.
Pataki’s 2003 “Assisted Living Reform Act” called for “plain language” contracts that fully disclose a residence’s services, costs, fees and policies.
These contracts would have included written residency agreements, and full disclosure of fees and services so consumers can compare residences to make the best placement choices. Additionally, the proposals called for “individual service plans,” developed by the assisted living center and the resident or resident’s family, to identify the services the operator will provide. The protections also would have included having plans in place for alternative placement if a resident becomes too sick to continue living there.
A balancing act
State Sen. George Maziarz (R-North Tonawanda), the former chair of the Senate’s aging committee and original sponsor of the Senate’s assisted living legislation, said consumer protection is crucial.
But he said creating legislation like this can be a balancing act for legislators, weighing the needs of consumers against the bottom line cost concerns of the industry.
“People draw lines in the sand,” Maziarz explained. “You want to help the industry, not hurt the industry. You want to help seniors and give them the most consumer protections possible without making it untenable for any of these industries to move into New York.”
The many attempts to regulate the industry have a long and, some say, frustrating history. They began in 1999, when Pataki proposed a bill requiring registration instead of licensure for assisted living facilities that rely on private paying clients. Registration would have formally identified many centers that operate without licenses, but would not have substantially increased the rules with which these centers must comply.
The proposal primarily focused on financial issues involving consumers, including disclosures of services and fee descriptions; complaint-resolution; and referrals to other facilities if a contract was terminated. It addressed the question of health care in these centers by creating new criteria for both admission and discharge.
That bill never went anywhere because of legislative disagreement and because it was opposed by health care interest groups.
In 2000, Maziarz introduced new assisted living legislation, this time holding hearings upstate and on Long Island to get input on the bill’s framework.
Many of the representatives of local facilities said in the hearings they supported some form of state oversight, but the opinions varied. Atria’s vice president of governmental relations, Julie Harding, testified at the Mineola hearing that the company, which currently has five centers on Long Island, “strongly” supported the concept of a “two-tiered” model that included either licensure or registration. “Had this bill forced all assisted living providers into a licensed model, consumer choice and provider flexibility would have been sacrificed,” she testified at the time.
In June 2001, Maziarz tried again. This time, he pushed a refined bill that mirrored the governor’s initial proposal, offering the option of registration, rather than licensure for some assisted living facilities and requiring extensive disclosure, assessment and discharge-planning.
But Maziarz said some factions of the industry, including many companies that operate licensed adult facilities, balked at further regulation. “We knew we weren’t getting it passed,” Maziarz conceded in an an interview, “but we wanted to get the discussion moving.”
Finally, in late 2002, a bipartisan bill emerged, with Maziarz as the Senate’s sponsor and Englebright as the Assembly’s sponsor. The bill didn’t have much input from advocates, Englebright said, and didn’t pass because the legislature was busy with other issues and the clock ran out.
And finally, last year, three separate bills emerged, from the state Senate, the Assembly and the governor. The Assembly passed its version last summer, and the Senate is expected in coming weeks to pass its version.
The ultimate death knell for a compromise among the three parties came when the governor’s budget office found that the latest proposals could create a shortfall in the state’s Medicaid budget.
Under last year’s proposed legislation, licensed adult care facilities, which must include about four hours of personal care a week as part of its room and board fees, could turn in their adult home licenses and become assisted living facilities, said Griesbach. This would open up the possibility that the homes, as well as other entities choosing to become designated assisted living facilities, could collect Social Security disability checks from some residents and bill Medicaid for their personal care, potentially creating a massive impact on the state’s already enormous Medicaid budget.
The governor’s office refused to put a dollar figure on the anticipated shortfall but lobbyists and legislators close to the negotiations said it was anywhere between $5 million and $10 million.
“Because of many assumptions and variables, there was no way to determine a specific amount,” said Ken Brown, a spokesman for Pataki’s budget division.
The largest association representing assisted living and adult homes in the state also had issues with the language of last year’s proposals, believing the legislation didn’t treat fairly the facilities that already were licensed.
Specifically, those homes — which are licensed as adult care facilities — would still have to follow very clear existing regulations that prevent them from keeping sicker, frailer residents. It wasn’t clear, however, if the new legislation would hold previously unlicensed centers to the same standard.
“It wasn’t creating a uniform standard,” said Lisa Newcomb, executive director of the Empire State Association of Adult Homes and Assisted Living Facilities. “It’s not a fair playing field.”
One of the major unlicensed chains offering assisted living on Long Island, Sunrise Senior Living Inc., is in favor of the pending legislation. “We were hopeful that we would have legislation passed this session,” said Maribeth Bersani, Sunrise’s national director of regulatory affairs.
Feds struggle as well
While New York continues to struggle with how to regulate assisted living, so too does the federal government.
In 2001, Sen. Hillary Rodham Clinton (D-N.Y.) testified before Congress, saying families often navigate a “complex terrain” when deciding what kind of facility is best for their families.”Under the current system,” she told Newsday this week, “many consumers lack the necessary information and the adequate standards to decide whether assisted living is appropriate for them or whether more care may be needed. I believe we must develop a true and comprehensive definition.”
Concerned about uneven state regulation, Congress appointed a work group made up of consumer advocates and industry members to examine the state of assisted living and come up with recommendations to improve it.
In its report presented to the Senate last April, the work group offered 110 recommendations and urged that states better inspect facilities before licensing them, especially when they attempt to serve those with dementia.
“Sadly, some facilities that serve people with Alzheimer’s disease and dementia do not even recognize the residents’ cognitive impairments or the need to adapt care to take account of those impairments,” Stephen McConnell of the Alzheimer’s Association testified last spring before the U.S. Senate’s Special Committee on Aging in Washington, D.C.
“They are not health care facilities and when someone develops real health care issues, they probably shouldn’t be in that facility,” said McConnell, vice president of advocacy and public policy for the Washington, D.C.-based group. “They should be somewhere else.”
Should legislation in New York ever materialize, advocates for the elderly say, the state will be pondering similar questions.
Nearly every state in the country has some form of assisted living legislation on the books, said Marvin LeRoy, a lobbyist for the Coalition of New York State Alzheimer’s Association Chapters Inc. “And New York State has been debating this for four or five years. Shame on them.”