By 2040, state leaders expect a nearly 30% increase in the number of long-term care residents on Medicaid who remain in their homes, and they’ve committed more than $1 billion annually to that cause.
But a year-long review by The Connecticut Mirror that encompassed interviews with state officials, elder care advocates, legislators, nursing home leaders and union representatives has found the intricate web of resources supporting those ambitions is fraying.
Private agencies and the state are struggling to recruit enough workers to care for this expanding population. Residents complain of difficulty navigating a convoluted home care system that operates with little oversight. A dearth of affordable housing and a lengthy process for accessing Medicaid are undercutting efforts. And Connecticut lacks a streamlined process for hospital discharges to the community, as it has with nursing homes.
The stakes are extraordinarily high. The nation’s 85-and-older population is expected to more than double by 2040. And Connecticut shoulders a disproportionate number of older adults. The state ranks 4th-highest nationally for its share of people in that age group.
“We’re in a care crisis, a housing crisis and a nursing home crisis. We’re at a dire point now,” said Rep. Michelle Cook, D-Torrington, a member of the legislature’s Human Services Committee. “There is a rapidly aging community. A vital part of our state’s future is how we navigate this.
“We have a moral and ethical obligation to take care of people.”
“I don’t think enough people are paying attention to this,” said Sen. Cathy Osten, D-Sprague, co-chair of the Appropriations Committee and an influential member of the Nursing Home and Assisted Living Oversight Working Group. “The things we pay attention to concern the next generation, what we are doing for children, and we certainly should do things for children. But we need to put as much into services for seniors as we are putting into services for young people.”
Advocates, lawmakers and elder care experts say there is an urgent need for better strategies to attract and retain a workforce that will aid Connecticut’s aging and disabled population, to ease the cumbersome process of navigating the home care system, to speed up Medicaid enrollment, and to address peripheral problems like housing that have an outsized impact on how and where people age.
“We need to address this in a big way, or we’re not going to have the workers and the physical infrastructure to care for an older population,” said Anna Doroghazi, associate state director of advocacy and outreach for the AARP in Connecticut. “We can’t just react to what the need is now.”
“We have to meet the immediate need but also to anticipate what that’s going to be years from now, when we will have more people over the age of 60 than under 18,” she said. “We’ve never had that. We don’t know what that world looks like. But we do know that it’s on its way and we have to rethink a lot of things.”
Problems mount in nursing homes
For decades, the bulk of the state’s long-term care spending went toward institutional settings like nursing homes. But just before the pandemic began, that trend shifted considerably.
In 2018, for the first time ever, the state spent more Medicaid funds on home and community-based services than on institutional care, 53% to 47%, state data show. By 2022, it had spent 58% of its Medicaid long-term care money on home services, versus 42% for nursing homes and other facilities.
Although the spread of COVID accelerated that swing, a migration from institutionalized care to home services had been underway for years. In 2009, 65% of the state’s long-term care Medicaid expenditures went to nursing homes. By 2017, that number had dropped to 50%.
Nursing home occupancy fell steeply during the early months of the pandemic. Hovering around 88% statewide before the first reported case of COVID, it plunged to 71% by July 2020.
As of February 2023, it had climbed to 83% but still hadn’t reached pre-pandemic levels.
Facility operators have sought $193 million more from the state to sustain struggling buildings. State officials balked at the request, and lawmakers raised questions about how several infusions of money during the pandemic were spent.
“We’re concerned about quality,” said Matthew Barrett, president and CEO of the Connecticut Association of Health Care Facilities. “As we move to the other side of the pandemic, especially as it relates to high Medicaid facilities and serving low-income communities, there is evidence that they continue to be under-resourced, and without proper focus and attention, we’ll continue to see slippage.”
Nursing home owners say they are having extraordinary difficulty recruiting and retaining workers, and many facilities are understaffed. From February 2020 to December 2022, the nursing home industry lost 210,000 jobs nationally, and staffing tumbled to levels not seen since 1994, officials with the American Health Care Association and National Center for Assisted Living said.
And in recent years, complaints about care in nursing homes have increased. In 2017, the Office of the State’s Long-Term Care Ombudsman logged 3,090 grievances from nursing home residents and their loved ones. Last year, it received 4,278.
Complaints range from lack of access to care, typically from understaffing, to meals arriving late and cold, problems with heating and air conditioning, trash piling up and residents missing daily activities.
During the last quarter, the health department issued four “immediate jeopardy” findings in Connecticut. In general, there has been an increase in those orders, at least partially due to staffing issues in nursing homes, Barbara Cass, chief of the department’s health care quality and safety branch, said at a public meeting recently .
The findings indicate that violations in a nursing home caused or were likely to cause serious harm or death to a resident.
The problems have stirred debate at the Capitol.
“People send me pictures and videos of their loved ones in nursing homes with their bed sores and whatnot. It’s horrific,” said Rep. Jane Garibay, a Democrat from Windsor who is co-chair of the Aging Committee. “Here we are discussing if we can afford to put in air conditioning for seniors when the majority of our animal shelters have air conditioning. We have to change the way we think.
“When someone says, ‘I went to see my father. He got up in the morning, and they didn’t answer his bell so they could assist him to the bathroom. After three hours, he went in his bed and they served him lunch in that state without cleaning him,’ people will say, ‘Oh, that’s awful.’ But there’s just not the outrage. I get outraged.”
Lawmakers have introduced bills during the 2023 legislative session to raise the mandatory minimum staffing hours in nursing homes, to require more transparency in how facility operators spend state money, to mandate that owners provide air conditioning in resident rooms, and to prompt broader disclosures about private equity investment in long-term care, among other proposals.
State officials are also trying to “right size” the nursing home industry by scaling back the number of beds — and, eventually, facilities — to align with current demand. Lawmakers are weighing a measure that would slash funding for buildings whose occupancy drops below 90% over a 12-month period.
“Essentially, we no longer want to pay for excess beds,” Andrea Barton-Reeves, the state’s social services commissioner, said at a public hearing in February.
A push for home care, a lack of direction
Home care services are ideal for both residents and the state. Most people prefer to age at home, and it costs less for the state to fund a Medicaid recipient in home care than in a nursing home.
But difficulty navigating the system has left many people feeling lost. For people already at home, the confusion can cause delays in getting care. For those in nursing homes who want to move back to the community, it can mean extra time sitting in institutional settings waiting for services to line up.
One issue is the absence of an updated home care worker registry. People on the state’s Medicaid program seeking care at home receive a binder with printed pages containing the names and contact information of potential employees.
But several residents have said the paper registry, produced by the state’s payroll agency, does not have up-to-date information for employees. Some people reported spending weeks calling candidates, only to be told they no longer work in the field, they could not take on additional clients, they did not live within a reasonable commuting distance or, in cases of people with special needs, they did not have the right skills.
Workers have complained about providing updated contact information but never seeing it reflected in the registry.
“There is a paper list. The reports we tend to hear about it are that it’s not up to date and it often does not reflect who’s actually looking for work,” said Diedre Murch, home care director with SEIU 1199 New England, the state’s largest health care workers union. “I’ve heard consumers talk about having to go through dozens of workers just to find someone who’s looking for another client. People tell me they live in Stamford and get names of employees from Manchester.
“Some of the workers say, ‘Oh my God, I’ve given my updated contact information 40 times and they still have my bad phone number on the directory.’ I hear a whole constellation of problems.”
After receiving care in a nursing home for 10 months, Alan Coker, 65, wanted to transition back to a home. Through a state program called Money Follows the Person, Coker set out to hire aides who could help him prepare meals, clean, run errands and shuttle him to doctor appointments.
But the process proved difficult. During an initial visit with an employee from the state’s payroll company, Coker said he was able to ask questions, but the answers weren’t especially helpful in picking a home care aide. After calling several candidates and conducting interviews, Coker spent more than a month in the nursing home waiting for paperwork to be processed.
“I was getting worried because I couldn’t leave the nursing home until I was able to find somebody,” said Coker, who lives in Manchester.
He wishes he had received more guidance and information about the system up front.
“I was given a notebook and told a checklist of employment information and questions you can ask — ‘You can ask for references, you can do this, you can do that.’ But there was no help from there,” Coker said. “Mistakes could be prevented or done away with if there was more initial assistance given. They’re basically throwing the consumer and the new personal care aides right into the fire.”
Mairead Painter, the state’s long-term care ombudsman, and others have recommended developing an electronic database with worker information that can be updated regularly.
“It is so antiquated, the way it’s done,” she said. “It needs to be electronic. There needs to be a database where someone can click and see — ‘I’m still working’ or ‘I’m not working,’ instead of literally this thing of paper. Everything should be computerized.”
Officials at the social services department said they plan to issue a request for proposals to hire a company that could develop an electronic database, though they did not give a target date for when the request would be issued or when the project would be completed. It would be funded with state and federal money.
The revolving door of home care workers is hard on some people and disrupts continuity of care. And trouble navigating the system means residents are going through a burdensome hiring process repeatedly.
Sharon Thorstenson, 58, began needing care in 2017 after a tick bite left her with a disability. She made a volley of calls to potential workers before landing a person who was right for her.
“Initially, I want to say I probably made 30 phone calls,” said Thorstenson, a Southington resident.
“It was very challenging, because there was so much thrown at you. And they really didn’t walk you through the program. You pretty much were given a binder with legal forms and things like that. There were so many things, and I wish there was more guidance from the agencies so it wasn’t so time-consuming and frustrating.”
To make matters worse, problems with compensation from the payroll agency and other issues meant workers kept quitting. From 2017 to 2021, her first years of home care, Thorstenson estimates she hired 28 different aides. Aside from disrupting her care, the exits were painful because she formed relationships with workers, only to have them leave over and over again.
“It breaks my heart,” Thorstenson said. “It’s kind of like grieving, because you’re losing somebody.”
‘Massive need’ for increased workforce
Home care is a fast-growing field in Connecticut. In 2011, there were nearly 21,000 home health and personal care aides working in the state. By 2021, there were about 38,000.
But the industry experiences staggering turnover, and the population it serves is expected to grow substantially. That has raised alarms for officials in the long-term care sector.
Turnover is 30% to 50% a year in the 11,000-member unionized workforce of personal care aides that serves residents on Medicaid. Low wages, problems getting paid on time and, until recently, a lack of paid time off have hampered efforts to keep workers in the industry.
Even at private sector agencies where benefits are better, some employers report an annual turnover of 50% or more.
“The biggest challenge — and it’s getting worse — is workforce availability,” said Julie Robison, professor of medicine at the UConn Center on Aging. “There is a massive need for an increased workforce in institutional settings but even more so in the community. You have lots of demand, and you have organizers who are willing to help set up plans for people. But just getting the day-to-day workers on the ground has been extremely challenging.
“The wages are low, the benefits are spotty, and it’s really hard work. Some people are just made for it and are so good at it. They should have a living wage.”
“It’s a real struggle,” added Painter. “We have many, many more older adults and individuals who may have care needs than we do the population of people who want to do that work.”
Nationally, the median pay for home health and personal care aides in 2021 was $14.15 per hour, or $29,430 per year, according to the Bureau of Labor Statistics.
Until recently, the personal care aides represented by 1199 SEIU in Connecticut made an average salary of $16.25 per hour, or $33,800 annually. After more than a year of rallies and bargaining, the union reached a new agreement with the state that raised pay to $17.75 an hour in 2022. For many members, it increased again to $18.25 this year.
“Our members are excited about the raises, but it’s clear this is still not a living wage in Connecticut,” said Murch, the 1199 home care director. “A living wage is north of $20 an hour. Even at $17.75, if you work full time, you’re making $36,000 a year. So it’s still a real struggle.”
In a 2022 union survey, roughly one-third of the personal care aides reported being behind on their rent or mortgage payments during the last year. Forty-two percent said they had paid late fees or were referred to a collection agency for unpaid bills, and more than one in five received a shutoff notice for utilities or had their utilities turned off during the past year.
Thirty-seven percent of the aides said they rely on food stamps, and a third could not afford groceries or did not have enough food to feed their families over the last year. Seventy-two percent reported using some form of state assistance.
Half of the PCAs reported taking unpaid days off during the last six months due to illness or quarantine. For years, the workers did not have regular paid time off (federal programs during the pandemic provided some relief, as did the recently enacted paid leave law). Under the terms of the new union contract, full-time aides were granted five paid days off, though union leaders say that benefit is on hold until the state hires a new payroll agent.
“There’s still a long way to go,” said Murch. “It’s not like illness neatly confines itself to five days a year.”
Aside from low wages and scant benefits, many personal care aides have complained about late payment or non-payment from an agency hired by the state to manage payroll. The unreliability of the agency, Allied Community Resources, to pay employees promptly has caused some workers to leave the industry, union officials and employees said.
For those living paycheck to paycheck, the consequences are worse. Some workers have been evicted from their homes or faced the threat of eviction.
Ebony Ross-Peel, 27, took on a new home care client in July 2022, her only one at the time. After two weeks of work, Ross-Peel had not received payment.
She and union leaders sent urgent pleas to the state and its payroll agent about the missed compensation. Confusion over paperwork was blamed for the problem.
But the late paycheck caused Ross-Peel, who has a 2-year-old son, to be evicted from her home.
In an email she sent to union leaders and the state on Aug. 18, Ross-Peel pressed for answers.
“So am I going to be receiving payment today or tomorrow? Because I had to let my son stay with my mom last night and sleep in my car,” she wrote. “I just need to know what I am doing tonight.”
“I shouldn’t have to go through this amount of stress over not getting paid for work,” she said in an August interview. “I just don’t understand it. I have never been through something like this in my life.”
Ross-Peel eventually was paid, but she left the field not long after.
“I most certainly do not want to work in home care anymore,” she said. “You give so much and you get so little out of it.”
Murch said many aides have complained about nonpayment or late payment. In 2022, the union received 1,653 grievances against Allied from personal care aides over payment problems. It has received 622 so far this year, she said.
She remembered one worker who went as long as 12 weeks without compensation.
“I can’t even talk about this without getting emotional,” Murch said. “I have been texting with a worker who is being evicted because Allied didn’t process her new hire paperwork. … I wish I didn’t hear these stories ever, but I wish I didn’t hear them every single week.”
Don Waddell, executive director of Allied, said all kinds of issues can cause problems with payment. For example, he said, if a client is discharged home from the hospital and begins receiving services, the company can’t pay a worker until it knows the client’s discharge date.
“We have rules and rules that we have to check before we actually make the payment,” he said. “We just can’t pay anything that comes to our office.”
In a joint statement, Waddell and Allied CEO Leigh Gallivan Mahoney added: “Our staff work extremely hard to clear up issues with employers and providers and are dedicated to processing the payroll ... as quickly as possible,” they said. “We know how critical it is for them to receive their pay every week.
“We have also introduced multiple ways for employers and their providers to report payment issues, all to streamline the problem-solving necessary for managing such a complex system. One of these areas is our website, which has an integrated problem-resolution form and online chat.”
State officials said they are aware of the payroll problems and put out a request for proposals to hire a new company to manage payments.
“The RFP process has concluded, and the state is in active contract negotiations with the selected vendor,” said Jalmar De Dios, a spokesman for the Department of Social Services. “The contract, which will include specific service level agreements, will start when negotiations are complete.”
State officials did not provide an estimate for when the new company would begin work.
“The goal [with the new vendor] is 100% payment on time, which we don’t have right now for a lot of different reasons,” said Dawn Lambert, co-leader of the Community Options Unit at the social services department. “There is a history of corrective action with Allied. We are aware of some performance targets not being met and have put in place corrective action over the years.”
But that hasn’t stopped the issue from recurring, even recently.
Union leaders said that even when a new company takes over, the state should provide better oversight to ensure payroll problems don’t keep happening.
“Sadly, the state has been slow on this,” said Pedro Zayas, a spokesman for 1199 SEIU. “Hopefully, the new payroll agency will make good for these members. We don’t expect perfect payroll, we know it’s thousands of workers, but we need good customer service.”
Challenges abound
Aside from an unwieldy system and cratering workforce, the state faces other barriers as it tries to encourage more people to age at home.
Lengthy wait times for accessing Medicaid, the lack of a streamlined process for hospital discharges to the community and challenges with housing also pose obstacles.
Medicaid, the primary funder of long-term care services, has a long approval process, sometimes as many as 90 days for verifying eligibility, state officials said. For people who need elder care urgently, the system can unintentionally steer them toward nursing homes.
“Nursing homes will typically admit an individual pending Medicaid eligibility determination because they are generally able to bear the cost of providing services until they are eventually paid, or even to withstand a total loss if they are never paid,” officials with the AARP noted in a 2021 report . “In contrast, agencies that provide home and community-based care typically cannot afford to start services without the certainty of being paid right away.”
“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,” the authors wrote . “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.”
Advocates have urged the state to consider “presumptive eligibility” as a way to help more people avoid institutionalized care.
Under the program , case managers and social workers can use screening tools and basic financial information to determine if a person is qualified for Medicaid and temporarily provide services, the AARP noted.
“To say, ‘Go sort it out for 90 days at home while we do the paperwork’ — some people can’t go 90 days without services. If they can, it might be because they have a friend or daughter or son who can take on a lot of that care, which also comes at a cost,” said Doroghazi, the AARP advocacy director. “There’s a big ripple effect, so presumptive eligibility is something that would be helpful.”
At least seven states already offer it. Five of them — Michigan, Washington, Ohio, Vermont and Rhode Island — adopted policies that allow for presumptive eligibility. Two states, California and Indiana, are offering it under a temporary Medicaid amendment.
In Connecticut, lawmakers introduced a bill in 2021 that would have established a presumptive eligibility program for certain home care applicants, but the measure never made it out of the Human Services Committee.
The program poses a risk. 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.
“It’s really about underwriting it upfront,” said Lambert at the social services department. “We’re going to assume that you’re going to qualify, and we’re going to pay your claims as if you qualify. And then we’re going to go through the [eligibility] process.
“If we’re right, we’ll go back and claim all of that money appropriately to Medicaid. But if the state’s not right, it’s going to continue to fund that, which could be expensive.”
Despite that, advocates say the state should consider the potential savings in averting unnecessary nursing home care.
“On average, states can provide care for approximately three individuals at home for the cost of one in a nursing home,” AARP officials wrote in the 2021 report. “Washington state officials determined that each client in their ‘fast-track’ presumptive eligibility program saves Medicaid an average of $1,964 a month by helping individuals access community services instead of institutional care.”
As Connecticut tries to keep more older residents at home, it also must explore better options for hospital discharges to the community, advocates say.
The hospital discharge process often shuffles older adults and people with disabilities to nursing homes because those facilities already have the infrastructure to care for them and can ensure a smooth transition.
“Ownership structures, in some cases, lend themselves to going from hospitals to nursing homes because they have the same management. A big health care system might have its own rehab center and nursing homes,” Doroghazi said. “It’s an easier lift for case managers and care planners.”
The Connecticut Hospital Association acknowledged that hospital discharges to the community are rife with challenges but said patient releases of any kind can be difficult.
“A lack of available home care services, due to the present health care workforce shortage, is impacting the staffing of home and community-based care programs and agencies, and delays in securing the necessary durable medical equipment to meet needs ... can create further challenges," said Nicole Rall, a spokesperson for the organization.
Residents who would prefer to be discharged to the community might not know they have that as an option, Doroghazi said. And hospital discharges to the home can be more difficult because there is no streamlined process for accessing community support systems. Low-income residents who need care immediately after their hospital stay may be steered toward a nursing home, because those facilities can accept people while they are waiting to be approved for Medicaid.
But discharging people to nursing homes increases their risk of remaining there. Data show nearly two-thirds of all Medicaid participants who enter nursing facilities are still there after six months, according to a state study of long-term care needs .
“Thus, for vulnerable populations, entry into a nursing facility can often lead to permanent institutionalization and loss of community ties and individual freedom of choice,” the report’s authors wrote.
Transitions from nursing homes back to the community are also complicated by a lack of affordable housing.
If a Medicaid recipient is looking for an apartment, it must be within the state’s maximum allowable rent, which varies depending on the town of residence and the number of bedrooms. It also must suit the person’s needs; someone who relies on a wheelchair must have a wheelchair-accessible unit.
Finding safe, affordable housing has proven difficult for many aging residents and people with disabilities.
“Affordable housing is critical, and we don’t have it,” said Painter, the long-term care ombudsman. “We cannot get people out [of institutions] because they can’t live in their community of origin. It’s so expensive.
“If you want to live in your community of origin and you live anywhere [in Fairfield County], for example, you really can’t find housing for most people unless you’re going to put them in horrible housing.”
The state study also cites affordable housing as a key impediment to home-based care.
“Finding adequate housing can be more challenging than developing the array of services needed to assist consumers,” its authors noted.
Weighing solutions
State officials say they are working on solutions to help ease the migration from nursing homes to home care.
For people seeking long-term care, they have launched a website, myplacect.org , with information about the process and what services are available.
Organizers say they plan to add podcasts and other elements to the site “to reach a broad range of audiences.” But advocates contend that the website still has a low profile, and a state study recommends increasing its readership.
The state also plans to build an electronic registry of home care workers that will be updated regularly.
“An RFP has been drafted and is near finalization and will then move through the final approval processes before issuance,” De Dios, the social services department spokesman, said.
In the meantime, the state Department of Developmental Services will put some worker contact information on its website to help connect people in its programs with personal care aides.
Painter has suggested the addition of a mobile app where consumers can search for prospective home health aides on their phones.
In the coming months, state employees will begin testing screening tools that could be used in a presumptive eligibility program, though no funding is lined up to launch the initiative.
“We have screening tools, we have an interview tool, and we’ve done training on them,” Lambert said. “We’ve worked with other states on the development of those tools.”
But to offer presumptive eligibility, Connecticut will need to set aside money to fund care for people awaiting Medicaid approval. Officials at the social services department said they did not know of any immediate plans to do that.
“It would have to be money appropriated by the state, because the state would be at risk,” Lambert said. “I’m hopeful of continuing the discussion.”
The study on long-term care lays out recommendations to prepare for the ballooning aging population.
To expand the home care workforce, it suggests recruiting employees who have left the nursing home industry. It also recommends boosting the profile of myplacect.org , increasing the number of physicians’ offices, hospitals and other locations that provide information on long-term care options, and creating an educational campaign for hospital social workers and discharge planners to improve awareness of home care services.
“Given the aging demographic, there is an urgent need for systemic reform,” the authors wrote.
The state’s health czar agrees.
“The country as a whole is undergoing a shift in demographics,” said Deidre Gifford, senior adviser to the governor on health and human services and executive director of the state Office of Health Strategy. “The population of the country is aging, and people are wanting to age in place. We need to adapt our health care system to align with those changing demographics.”
Legislators say that in the coming years, a wide-ranging bill or set of proposals is needed to address these issues in a broader way.
“The plan is not there,” said Garibay, co-chair of the Aging Committee. “We see the problem coming, but right now we’re just trying to plug the dike with patches. We need to have an overall plan, and we have to work together.”
CT Mirror staff writer Katy Golvala contributed to this story.
