As Connecticut’s population of older adults grows and more people choose care outside of nursing homes, advocates worry that access to services for the aging will become more unequal.

The cost of care and housing can be obstacles to those who want to spend their final years at home. And advocates say not enough is being done to track disparities and find solutions.

Assisted living facilities, considered a more independent arrangement than nursing homes, are largely paid for privately, limiting who can afford it. A lengthy process for enrolling in Medicaid means people who need care urgently but can’t pay out of pocket may be pushed toward a nursing home, even if they prefer to stay at home. And a lack of affordable housing bars some people from staying in the community.

Despite an aggressive push by the state to fund more home and community-based services, some care remains out of reach for people who can’t afford it.

“There’s incredible inequity across our health care landscape but particularly in places like care for the elderly,” said Sen. Matthew Lesser, co-chair of the Human Services Committee. “If you look at elder care, you’ll find enormous inequities in how different folks are treated across Connecticut. A lot of it depends on your ZIP code, your affluence and, frankly, your race.”

Assisted living facilities allow people to continue living independently. Residents have private quarters but receive on-site services like home health care, transportation, meals, and unit maintenance and repairs.

But because the facilities are mostly private pay, fewer low-income residents and people of color are able to access them, researchers noted in a 2021 national study in the Journal of Post-Acute and Long-Term Care Medicine.

In Connecticut, the median monthly cost to reside in an assisted living center is $5,129, according to the Genworth 2021 Cost of Care Survey. That’s higher than the U.S. median monthly cost of $4,500.

And of the 119 assisted living centers in Connecticut, 77% are located in towns with a higher median income than the state overall, while 68% are located in towns that are both wealthier and whiter than the state overall. 

“Few assisted living communities take Medicaid, and most are located in high-income, primarily white neighborhoods; so not surprisingly, Black individuals constitute only approximately 4% of assisted living residents,” authors of the national study wrote. “Thus, assisted living has become the residential option of choice for many individuals who can pay privately, most of whom are white, whereas nursing homes, nearly all of which accept Medicaid residents, have emerged as the default residential long-term care option for Black individuals.”

The median wealth of the average white household nationally is 10 times that of the average Black household, they noted.

“Over multiple generations, the economic impact of chronic racism has been to limit the current generation’s income-generating ability and create marked disparities in the ability for wealth to accumulate and be passed from one generation to the next,” the authors wrote. “Consequently, far more white individuals than Black individuals have resources to enter long-term care on a private-pay basis and to choose their setting.”

Mairead Painter, the state’s long-term care ombudsman, pointed to assisted living centers as an area of disparity in access to elder care.

“One of the biggest pieces of evidence of [inequities] is the expansion of assisted living,” she said. “Other than a few PILOT programs [for low-income people], which are very few in number, it’s only available to the wealthiest people who can spend privately for years.”

Barriers also exist in home care. A long process for accessing Medicaid — as many as 90 days — means people who need care quickly but can’t afford to pay out of pocket while they wait for approval could be pushed toward a nursing home.

Nursing homes will typically admit people while they await Medicaid eligibility determination because they generally are able to bear the cost of providing services until they’re paid, or to withstand a loss if they are never paid, according to a 2021 AARP report. Companies that provide home and community-based care often cannot afford to start services without the certainty of being paid right away.

Medicaid covers more than 70% of nursing home residents in Connecticut.

“The time period between applying and final approval of Medicaid eligibility can be particularly perilous and stressful for individuals who urgently need long term services but have limited resources,” AARP officials wrote in their study. “To avoid a nursing home admission, they must either rely on family caregivers or privately pay for home-based services, all the while navigating a complex, fragmented system of providers.”

The lack of affordable housing in Connecticut is another hurdle for many who prefer to age in the community.

If a Medicaid recipient is looking for an apartment, it must be within the state’s maximum allowable rent, which is used to calculate the amount of housing assistance a person may receive and varies depending on the town of residence and the number of bedrooms. It also must suit a person’s needs; someone who relies on the use of a wheelchair must have a wheelchair-accessible unit. That can limit choices.

“One of the biggest tragedies of the increased utilization of home- and community-based service waivers is that not all communities have the housing stock, the transportation and the support needed for somebody to successfully make the transition out of institutional care,” said Alyssa Norwood, director of the Connecticut Age Well Collaborative. “And that’s disproportionately reflected in the BIPOC [Black, Indigenous, and people of color] population.”

Tracking disparities

Researchers and advocates say not enough attention is being paid to disparities in access to elder care. Connecticut does not have robust data collection on race, ethnicity and language in assisted living facilities and home care settings, they said, and similar data in nursing homes can be unreliable.

While nursing home staff are required to complete a form for each resident upon intake that features questions about race, ethnicity and language, some workers put down their best guess instead of asking, Painter said.

“A lot of individuals are not necessarily always comfortable asking, so they score what they think,” she said. “That’s why there’s been a reluctance from the federal government side to want to use this data, because they know [a problem] is the person doing the scoring. If they don’t have a comfort level or know how to have a conversation, they just mark what they think. And so we haven’t always been sure about the reliability of this.”

If you’re rich, you can have it, and if you’re poor, you can’t have it. But some fundamentals, like health care, everybody should have.

Toby Edelman, senior policy attorney at the Center for Medicare Advocacy

More policymakers should be focused on tracking disparities and exploring solutions, advocates say. That also includes better care for people residing in nursing homes.

“Lots of people have raised this concern over the last 30 years, and not much has changed,” said Ruqaiijah Yearby, a law professor at Ohio State University who co-authored the study in the Journal of Post-Acute and Long-Term Care Medicine. “That was quite clear during COVID … [nursing homes] were going to be places where people were going to be the most vulnerable, where there was a need to increase money, staffing and protection for everybody, and it did not happen.”

“Figuring out solutions is not easy,” added Toby Edelman, senior policy attorney at the Center for Medicare Advocacy. “We can see that, OK, it’s not fair. But that’s how a lot of things are in this society. If you’re rich, you can have it, and if you’re poor, you can’t have it. But some fundamentals, like health care, everybody should have. And we’re a long way from having a long-term care system that is publicly financed.”

Will Connecticut expand programs for low-income residents?

In the early 2000s, the state began construction on a series of assisted living facility units designated for lower income residents. For a program dubbed the Senior Assisted Living Demonstration, officials set out to develop 300 units for people on Medicaid waivers in the Connecticut Home Care for Elders initiative. To qualify, residents must be 65 or older, be at risk of nursing home placement and meet the financial eligibility criteria.

The state completed 226 total units across four facilities in Hartford, Glastonbury, Seymour and Middletown. It also participated in another program, Assisted Living in Federal Facilities, that allowed managers of housing projects for older adults to seek federal grants for rehabilitation and assisted living services. At least seven facilities have received those grants to upgrade their buildings and services, according to the state Department of Housing.

But advocates say the state should expand its affordable assisted living options, especially as the nation’s older adult population is expected to surge in the coming decades.

This is not an opportunity that everybody has … but it’s an opportunity everybody should have.

Heidi Lubetkin, vice president of clinical and senior services for the Community Renewal Team

“These subsidy programs do not serve a ton of people,” said Christopher Carter, president of the Connecticut Assisted Living Association. “For some time, we’ve known about the success of these programs. … To the extent that we can expand them for the benefit of folks who have less assets and less income, it just makes sense to do that so they don’t wind up in a more costly institutional setting.”

Carter has suggested the state conduct a study of what has made the programs successful and how it could build upon them.

At The Retreat in Hartford, one of the four facilities created under the demonstration program, there are 100 spots for people with lower incomes. Residents pay as little as $50 a month for rent.

“We are a hodgepodge of a blended community. We have people from Myanmar. We have people from Puerto Rico. We have people from Africa, Jamaica, so many different countries,” said Heidi Lubetkin, vice president of clinical and senior services for the Community Renewal Team, which owns The Retreat. “We are a melting pot of lots of different populations, which is very different than traditional assisted living.”

“If it wasn’t for The Retreat, the more than 600 people who have ever lived here would not have had the opportunity to live in their own private apartment with the services they need and would most likely have been in a nursing home,” she said. “This is not an opportunity that everybody has … but it’s an opportunity everybody should have.

“It gives an opportunity for equality across the board.”

Sherry Mallia lost her job at a dental office during the height of the pandemic and was later evicted from her Plainville home. She spent five months moving from hotel to hotel in 2021, until a social worker connected her with staff at The Retreat.

It requires a whole lot of legislative commitment to make it happen.

Michael Santoro, director of policy research and housing support at the state’s housing department

The assisted living center helped restore some stability to her life.

“It was a long struggle, but then I was here, and it totally changed my life,” said Mallia, 72. “I had, like, one folding chair. And the people here brought me furniture, they brought a bed, a TV, a couch. They just took care of me and got me back on my feet.”

Funding the programs is complicated. For the demonstration initiative, the state relied on a mix of general fund appropriations and borrowed money, plus some federal dollars.

“It requires a whole lot of legislative commitment to make it happen,” said Michael Santoro, director of policy research and housing support at the state’s housing department. “That’s difficult over a 30- or 40-year period. That’s how long the capital financing is for. There’s a mortgage on the property for 30 or 40 years. And you want the eligibility for the program to last that same amount of time.”

And to help people who need access to Medicaid quickly for home care, advocates have urged the state to consider presumptive eligibility.

Under the program, case managers and social workers use screening tools and financial information to swiftly determine if a person qualifies and to offer services. But there is risk involved. If a person ultimately is found ineligible for Medicaid, the financial burden of the services falls on the state or is shared with home care providers.

Connecticut officials say they are testing screening tools that could be used as part of that effort, but so far, no funding has been committed.

“It would have to be money appropriated by the state, because the state would be at risk,” said Dawn Lambert, co-leader of the Community Operations Unit at the Department of Social Services. “I’m hopeful of continuing the discussion.”

Lawmakers have begun to contemplate how they might improve services. This year, they have proposed new staffing mandates in nursing homes and greater transparency measures for long-term care funding, among other requirements. But so far, no specific proposals have been raised about assisted living programs for lower income residents or presumptive eligibility this legislative session.

“Figuring out how we can care for all the folks who need care is going to be the biggest challenge facing the state over the next couple of decades,” Lesser said. “It’s a major challenge. And it’s going to keep us busy.”