Long-term care providers and government agencies need to do more to educate and empower residents and their families about their rights and how to exercise them.
That was the core message from a prominent legal representative of a consumer advocacy group Tuesday during a special online session that could lead to more demands on providers’ time.
The skilled nursing sector has been slow to address residents’ concerns, despite many years of advocacy, said Eric Carlson, director of long-term services and supports advocacy at consumer advocacy group Justice in Aging. While he avoided painting all long-term care providers with the same broad brush, he clearly indicated that operators should be doing more.
“I’ve been doing this for a long time,” he told attendees at the Long Term Care Community Coalition-sponsored event. “I’m not saying that we haven’t made progress, but there are still a lot of bad things that were true several decades ago that are still true now.”
The attorney cited examples from his past legal work stretching back nearly 35 years, in which facilities had tried to evict residents after they lost access to Medicare coverage — erroneously claiming that Medicare-certified beds could only be used for Medicare beneficiaries. He also described facilities trying to deliver cheaper, less personalized care to Medicaid beneficiaries, despite federal regulations requiring equal care be given to residents regardless of payment source.
Carlson also noted that federal resources like the consumer-facing Care Compare website place a significant emphasis on finding a highly rated nursing facility. Yet relatively few resources are invested in educating residents and their families on their rights or how they can proactively advocate for themselves, he said.
“The system makes it worse in a variety of ways by assuming that you don’t, as a resident, have anything to say,” he argued. “Care Compare … is focused almost exclusively on just finding a facility. … The unstated premise is that you just have to find a good facility and once you’re in a ‘good’ facility everything is fine. That’s not how it works — you have to be educated, you have to be prepared to advocate, you have to know what your expectations should be.”
Sharing the power more
For Carlson, the way forward lies through making family members more interactive with facility workers. He said that beyond educating staff and changing nursing home policies, residents and their families need to get more involved in care decisions.
Consumer advocates — long at odds with providers over issues such as ownership transparency, required staffing levels and other regulatory measures — actually may have some common ground with the long-term care sector on this issue, he pointed out.
Empowering resident councils is a significant part of recent efforts within the sector from groups such as the Moving Forward Coalition, for example.
But challenges remain in a sector governed by complex regulations and plagued by short staffing. There are many staff retention woes and fixed reimbursement rates that many skilled nursing providers say leave them operating with tight margins, or even at a loss.
Carlson cautioned consumer advocates that longstanding complaints likely will not bring quick changes, but progress can be made with consistent steps toward patient empowerment.
“If there were more of a sense of residents and their families and communities saying, ‘We know something about nursing facilities, we’re concerned about this’ — that could be a tremendous help,” he said.
