Editor's note: This story accompanies a four-part series on Connecticut’s aging population and the challenges in finding ways to care for people.
The number of residents choosing home care over nursing homes has escalated in recent years.
Shortly before the pandemic began, the state for the first time spent more Medicaid dollars on long-term care at home than in institutional settings. When COVID tore through nursing homes, killing thousands, that trend accelerated.
But while people in nursing facilities have access to the state’s ombudsman program, which investigates complaints and advocates on behalf of residents, the tens of thousands of people being cared for at home do not.
Mairead Painter, Connecticut’s long-term care ombudsman, has for years called on state leaders to expand the number of workers in her office so people in home care can also receive the benefit. Painter’s office currently has eight regional ombudsmen who deal with people in nursing homes, assisted living centers and other institutions.
In 2022, the legislature signed off on a state budget that funds one additional position – a manager to help design and oversee a program for home care residents. But no funding has been set aside for the employees who would field complaints.
This year, Painter asked for enough money to staff 12 positions that will serve home care residents. So far, Gov. Ned Lamont’s proposed budget includes enough funding for one more worker.
When asked why only one additional position was included in the proposed budget, Adam Joseph, a spokesman for Lamont, pointed to other long-term care priorities the governor has suggested funding, such as a quality assurance unit for health care facilities.
“We are committed to protecting the health and safety of our vulnerable seniors and individuals with disabilities,” he said in a statement. “The administration has proposed significant, meaningful strategies that enhance quality, align financial/industry incentives with consumer interests, and accelerate our rightsizing goals.”
Painter said she receives dozens of calls each month from home care residents who need an ombudsman’s help.
“There is a gap in the support for ensuring those individuals’ voices are heard,” Painter said. “People assume if they’re in the community, that people can just advocate for themselves. But it’s really challenging and the system is hard to navigate.”
“It’s a big gap,” she said. “And it’s getting bigger. We’ve seen the population of older adults grow. We’ve seen the population of people choosing to stay in the community grow. And so the demand has grown.”
The ombudsman’s office investigates complaints, resolves problems, educates residents about their rights, provides information about long-term care services and supports, and advocates for improvements in state and federal policies.
There currently is no federal funding or authorization for ombudsman programs to serve home care residents. States that want to do so must pass their own laws permitting the service and funding the positions.
At least 11 other states have adopted policies allowing their ombudsman programs to respond to home care residents, including Alaska, Idaho, Maine, Minnesota, Ohio, Pennsylvania, Rhode Island, Virginia, Wisconsin, Wyoming and New Hampshire, as well as Washington D.C. But not all have funded the additional positions.
In Ohio, the ombudsman’s office employs just over a hundred paid staff and recruits hundreds of volunteers who respond to both nursing home and home care issues.
“Like most other states, we have organizations such as adult protective services. They’re investigating crime, abuse, neglect and exploitation, which is great. We still need that,” said Erin Pettegrew, Ohio’s deputy long-term care ombudsman. “But then there’s – ‘My aide doesn’t show up on time.’ Maybe they’re bilking their hours. Maybe I’m not getting the food I’ve ordered, or maybe I go to the day center and the activities aren’t offered as promised. Those are things adult protective services and law enforcement don’t have the resources or the authority to investigate and try to help resolve. So I think that is the gap ombudsman stand in place of.”
“Most people who live in the community have some kind of support – they’ve got family members, friends or neighbors who can advocate for them,” she said. “But so many people are aging past a spouse or their own children, so having an ombudsman who can step in and navigate difficult settings and situations can be very helpful.”
Mark Miller, Washington D.C.’s long-term care ombudsman, said more states should consider services for home care residents as a growing number of people age in the community. The District of Columbia serves home care residents who participate in Medicaid waiver programs, which fund care at home with the aim of keeping people out of a nursing facility.
“It’s a huge gap,” he said. “The number of people at home receiving services in most states is exponentially greater than the number of people in long-term care facilities. And that’s only going to grow as waiver programs expand.”
In states without home care ombudsmen, Miller said, “If you have a problem with your home care services, you’re likely to be able to complain to two places: the agency that’s providing the service, or the regulatory agency. And their ability to respond quickly may be limited. So you’re really out there without an independent, objective person to be on your side.”
For now, Painter said, she refers home care residents who call her to state agencies with the authority to investigate. But turning people away is disheartening, she said.
“It’s really frustrating when someone discharges to the community and they have that rapport and relationship with my office and they’re used to having someone walk alongside them, and then we’re not able to provide them with that,” she said.
Rep. Jane Garibay, a Democrat from Windsor who is co-chair of the legislature’s Aging Committee, said lawmakers must take a hard look at funding for the ombudsman’s office and try to do more.
“We’re not good at planning. It’s like everything or nothing,” she said. “So if [Painter] needs 12 positions, how many can we do this year? How many can we do next year? We have to plan outward to meet these needs. We’ve gotten where we’ve gotten because a lot has not been done for the aging population.”