As its population continues to gray, the state is increasingly turning to nursing homes to care for aging and disabled New Yorkers. But as the number of nursing home residents rises – New York now leads the nation, with more than 100,000 residents in certified homes – advocates claim that lawmakers and state agencies have not done enough to meet the needs of this vulnerable population.

Personal needs allowance

One issue that advocates hope the state Legislature will address in the upcoming session is the long-term stagnation of nursing home residents’ monthly personal needs allowance. The allowance, which is administered by the state to help residents with costs not covered by Medicaid, is set at $50 per month, a rate that has not been changed since 1981. (Adjusted for inflation, that would equal $131 today.)

Judy Wirkula, a liaison with the Family Service League’s Long Term Care Ombudsman Program in Suffolk County, says many nursing home residents on Medicaid rely on the allowance for items widely considered to be basic necessities.

“In many cases, this is the only way that residents can pay for things like toiletries, new clothes, or even just a candy bar from the vending machine,” Wirkula said. “Residents also can have recreational therapy opportunities, but they have to pay for those trips out of their personal needs allowance. They use that money to feel some connection with the rest of the community.”

Carol Mortimer, a resident at Gurwin Jewish Nursing & Rehabilitation Center in Commack and a member of the Nursing Home Leadership Group, an advocacy group composed of nursing home residents across the region, says the current allowance rate simply cannot meet residents’ needs.

“The way it is now, you can’t afford to buy even a blouse,” Mortimer said. “You have to save up for months to buy the things that you need. God forbid that you need a winter coat. ... And if you don’t have family members – and many don’t – you simply don’t get the support you need for basic items that most people take for granted.”

In response to repeated pleas from residents and advocates, a bill has been brought before the Legislature to raise the monthly allowance to $75, and would introduce an annual cost-of- living adjustment. While advocates are cautiously optimistic that a bill has been taken up for consideration, similar legislation has failed to make it out of committee in previous sessions.

“What do we have to do to make an impact on legislators?” Mortimer asked. “I’m sure that they couldn’t survive on that.”

Binghamton’s Clifford Crouch, the Republican sponsor of the bill in the state Assembly, agrees. “Too often, we forget the needs of the elderly,” Crouch said. “We need to pay attention to their needs and make sure that number does not get stale. All costs continue to go up.”

While he says the $25 per month raise is only a fraction of what residents should really be receiving, Crouch said the legislation would be an important step in the right direction.

“Frankly, I think that if we were to ask for there to be parity with the 1981 allowance in terms of inflation, there would be a lot of pushback because it would be a significant cost to the state,” Crouch said. “However, built into the language of the bill is a clause for the allowance to be automatically adjusted each year. That way, decades won’t go by before we get another adjustment.”

Utica Assemblyman Anthony Brindisi, a Democratic co-sponsor, said a bipartisan push during the session’s early weeks could keep the bill from faltering again.

“I think it’s always hard to get legislation passed that has budget implications,” Brindisi said.

He implored fellow legislators to listen to their constituents. “I have one constituent who has been refusing to shave in an act of protest,” Brindisi said. “I get calls from older adults who reside in nursing facilities who will tell me about situations – they can’t afford clothes, can’t afford dentures, can’t send a card to a family member.”

“It’s a matter of basic human dignity,” he said.

Living Independently

In addition to the effort to raise the personal needs allowance, other nursing home advocates say the state has not properly administered its Nursing Home Transition and Diversion waiver program, which is designed to help able residents transition out of nursing homes and into home- or community-based Medicaid services.

This allegation is the subject of a class-action lawsuit brought by the nonprofit MFY Legal Services on behalf of several New York City nursing home residents against the state Department of Health and the Visiting Nurse Association of Staten Island, a nonprofit that manages the day-to-day operations of the waiver program. The complaint, filed in the Eastern District of New York in August, alleges several nursing home residents have been unable to take advantage of the waiver program even though they are capable of receiving care in more independent settings.

“The NHTD Medicaid waiver program was developed based on the philosophy that individuals with disabilities, or seniors, may be successfully served and included in their surrounding communities,” a spokesperson for the Department of Health said in an email.

However, the complaint claims several residents were denied eligibility either without explanation or for reasons outside the scope of the program, such as criminal history. The complaint also alleges that some residents were not informed of their right to a fair hearing upon being denied eligibility. At least one resident who was initially deemed eligible, the complaint says, has waited over a year to access waiver program benefits.

Nahid Sorooshyari, an attorney at MFY Legal Services, says the various obstacles keeping residents from accessing the waiver program, such as an overly complicated application process, violate the due process clause of the U.S. Constitution, as well as the Medicaid Act.

To apply for the program, an individual must first contact their regional resource center – in the case of the complaint, VNA of Staten Island – which will send a specialist to make a preliminary determination of that person’s eligibility. If a resident is deemed initially eligible, they must select a service coordinator from a list of approved options, who in turn helps the resident complete a formal application and identify potential housing in the community. That application then goes back to the original specialist, who will make an ultimate determination and notify the applicant of his or her eligibility.

Given the “Byzantine” nature of this process, Sorooshyari says it is not surprising when applications languish at various stages of the process.

“There is no question that this program is laudable,” Sorooshyari said. “However, it doesn’t matter how worthy the program is if you’re forcing residents to navigate such a convoluted, multi-tiered application process. Many of these residents don’t even have cellphones, so it is incredibly burdensome to go through the many necessary steps.”

The case of one plaintiff, Gary Milline, a 63-year-old resident of Terrace Healthcare Center in the Bronx, highlights the many roadblocks applicants can face. Milline decided he would like to live in the community, since he is able to walk short distances and perform daily activities with proper assistance.

During his intake appointment with VNA of Staten Island, the complaint says Milline was incorrectly told that his prior criminal record could impact his eligibility. Two weeks later, Milline’s request was denied. After an appeal, Milline was granted a second interview and was finally told that he was in fact eligible for the program.

Yet Milline was never provided with a list of approved service coordinators, according to the complaint. And after independently finding a service coordinator that agreed to take his case and notifying VNA of Staten Island, he still has not received any NHTD waiver benefits. His initial request for eligibility was over a year ago.

Sorooshyari says Milline’s case is not unusual.

“The cap for enrollment in this program was set at 4,400 participants; to date, only about 2,200 have been enrolled across the state,” Sorooshyari said. “Given the work that we’ve done in the community around this issue, we find it pretty unlikely that the lack of enrollment is due to a lack of interest in receiving these benefits.”

VNA of Staten Island has not responded to repeated requests for comment.

While declining to comment on the complaint’s specific allegations, a spokesman for the state Department of Health said the state’s Care Management for All initiative could improve the process for recipients of long-term care services. The initiative aims to have all Medicaid enrollees served in care management programs by April 2018. “The Care Management for All approach will improve benefit coordination, quality of care and patient outcomes over the full range of health care, including mental health, substance abuse and developmental disability and physical health care services,” the spokesman said in an email.

Despite these efforts, Sorooshyari worries that her clients – and many others – will not be able to experience the dignity of independent living without changes to the implementation of the NHTD waiver program.

“Studies have shown that nearly 10 percent of nursing home residents can – and want to – live independently,” Sorooshyari said. “It’s the responsibility of the state to provide them with that opportunity.”