Long-term care policy needs a reset, particularly in assisted living, according to one expert from a consumer advocacy group.

Eric Carlson, director of long-term services and supports advocacy at Justice in Aging, said that residents and their families enter senior living communities with little relevant knowledge, “tiptoeing in, unsure of themselves and what should be happening.” 

With little federal oversight, he said during a recent Long Term Care Community Coalition webinar, assisted living follows “relatively loose” state standards, meaning that individual communities often set their own care and service levels. 

Some assisted living communities provide Medicaid services through home- and community-based service programs, which are governed by federal HCBS quality standards announced last year. 

But Carlson said that assisted living quality measures at the state and federal levels don’t actually measure assisted living or quality. Justice in Aging released a report earlier this year that focused on what it called “deep problems” in both federal and state Medicaid policies. The US Government Accountability Office also called out the Centers for Medicare & Medicaid Services earlier this year for not taking action on recommendations from a 2018 report on assisted living.

Assisted living, Carlson said, receives much less attention from the federal government than does skilled nursing. The assisted living sector does “next to nothing” to track quality of care, and the federal government has no identifiable focus on Medicaid-funded assisted living, he said. 

Carlson said that a need exists for the federal government to “start over” on assisted living — step back to see what it can do to establish federal standards if a significant amount of Medicaid dollars are going into the setting.

“The current system is not prepared, at all, to ensure quality in Medicaid-funded assisted living,” Carlson said, adding that the HCBS system is not set up for facility care and providing care for people whose care needs justify nursing home-level care. 

“Long-term care facility policy needs a reset, particularly in assisted living,” Carlson said. “It’s a matter of making progress every single day, which is the way that benefits people individually and the system more broadly.”

Listening to residents

Part of that reset, Carlson said, should include listening to residents. Most facets of long-term care facility policy, he said, could benefit from increased input from residents, resident families and their representatives.

Operators, Carlson said, present themselves as focusing on care and compassion, but residents and families often say that they are afraid of asking for better care. And at the public policy level, Carlson said, providers paint themselves as being “punished by a supposedly punitive enforcement system,” although he said that critics point to intricate corporate structures that seem designed to hide profits.

“There’s something odd in that dynamic where residents should feel so scared of just asking for the care they are entitled to,” Carlson said, adding that the reality is that operators have an “incredible amount of control” over what they are doing, as well as significant financial resources for lobbying. 

Carlson also attacked the long-term care industry’s conversations about culture change. Such discussions generally focus on staff training, he said, adding that real culture change should involve increased power for residents, families and their representatives. Taking person-centered care seriously, Carlson said, means reinvigorated resident and family councils, resident and family education, better funding for ombudsman programs and stronger enforcement of legal violations.

“You can’t wait for a surveyor to come in once a year in response to a complaint,” Carlson said. “You want to be in a position to push back in a variety of ways every day or every week.

“It’s too easy for facilities to assume no harm, no foul,” he continued.

Carlson added that Congress and the Centers for Medicare & Medicaid Services might respond differently if they could hear more from residents and their families.