(Editor’s note: This story is the first of a two-part series on how to cope with the eviction of a loved one from a nursing home or other long-term care facility. The second story is How to Cope With a Nursing Home Eviction.)
Moving a loved one into a nursing home can be difficult. Getting settled in a new environment, surrounded by strangers, is a challenge for anyone, often made harder if the person has cognitive impairment. Once the transition is made, family members hope it will be a long-term solution. But Laurice Redhead, of Washington, D.C., learned the hard way that nursing homes can force a person to leave.
Redhead’s late mother, Rosa Diggs, ended up in a nursing home after a bout of pneumonia and a hospital stay in 2009 ended up with doctors inserting a tracheotomy to help her breathe. The tracheotomy tube, which she had for the rest of her life, prevented Diggs from speaking.
One of the facilities looked good to Redhead on the outside, but she encountered problems for her mother. The physician there prescribed sedatives that Redhead didn’t think were needed.
“Involuntary discharge (from nursing homes) is the number one complaint that (long-term care) ombudsmen have had to deal with for the past seven years.”
“My mother was very quiet, polite, old school,” she says. “I asked if she was causing any problem, and [the doctor] said ‘No, it’s just to keep her quiet.’”
Eventually, after 18 months of expressing concerns about her mother’s medications and other problems, Redhead was told by the nursing home attorney that she had 30 days to move her mother out. The lawyer said the nursing home could not provide her with the care she needed. Rather than pursue her right to appeal, Redhead moved her mother into what turned out to be a substandard place. She died soon after.
“You live with this for years. It never goes away,” Redhead says of the distress she feels about what happened to her mother.
Rights of Long-Term Care Residents
Eviction stories like Diggs’ happen to thousands of nursing home and assisted living residents each year.
“Involuntary discharge [from nursing homes] is the number one complaint that [long-term care] ombudsmen have had to deal with for the past seven years,” says Lori Smetanka, executive director of the National Consumer Voice for Quality Long-Term Care.
More than 10,000 consumers complained about involuntary discharges in 2018, according to national ombudsman data. One common reason residents are told to move out: behavioral issues related to dementia or mental illness. But experts say these discharges are often unwarranted.
In 1987, Congress passed the landmark Nursing Home Reform Act, guaranteeing a set of comprehensive rights for residents, such as the right to receive adequate care, to be treated with dignity and respect and to make personal choices about how you dress or spend your time. (Unlike nursing homes, assisted living facilities are not covered by federal regulation, and states have varying rules.)
Included in the Nursing Home Reform Act is a section on a resident’s right to remain in a nursing home, unless a transfer or discharge “is necessary to meet the resident’s welfare” or “is needed to protect the health and safety of other residents or staff.”
The nursing home must give a resident at least 30 days notice, put the reason for the discharge in writing, indicate where the person will be moved and include contact information for the state ombudsman.
Residents have the right to appeal. If the eviction is due to non-payment, the resident has the right to remain in the nursing home if the person has applied for Medicaid assistance and is awaiting a decision.
In 2016, the Centers for Medicare and Medicaid Services (CMS) revised the nursing home regulations. “This was the first major update in thirty years,” Smetanka says. One of the updated provisions was in the area of transfer and discharge. CMS found that some nursing homes were inappropriately claiming they could not meet a resident’s needs.
With the new regulations, “They have added extra protections,” Smetanka says. “The nursing home has to document specifically what the [unmet] need is, what attempts they took… and what services [the new place] is providing that the original place says they couldn’t provide.”
National Consumer Voice is training ombudsmen, surveyors, residents, family members and advocates in the updated rights and urges families to appeal improper nursing home discharges.
Blaming the Victim?
“The main medical paradigm is to blame [difficult behavior] on the dementia,” says Dr. Allen Power, who worked in nursing homes for 22 years and is the Schlegel Chair in Aging and Dementia Innovation at the University of Waterloo’s Research Institute for Aging in Ontario. Power is the author of Dementia Beyond Drugs: Changing the Culture of Care.
“I reject this … to say it’s a symptom of dementia means it is caused by brain disease,” he says. “It could be something much deeper. For example, if a person is living in an environment where they have no choice or control; if strangers are bathing you, and there’s high staff turnover.”
Often agitation and anger “are a form of communication,” agrees Smetanka. “The key is finding out if it’s pain, hunger, thirst, fear or boredom.”
“The facility has a responsibility to meet the needs of the individual. They can’t say, ‘because of your dementia, if you become combative, we’ll discharge you.'”
Power has found that rather than evict residents, nursing homes may be inappropriately using antipsychotic drugs. Sedation, he argues, “is a violation of rights.”
Instead, he and others say, nursing homes should conduct thorough assessments.
“You have to ask: ‘Have you really looked at everything? Have you seen patterns or triggers?” says Carmen Bowman, who has a consulting practice called Edu-Catering in Brighton, Colo. Bowman is a former nursing home state surveyor who trains long-term care staff on transforming their institutional culture into one that supports a high quality of life for residents.
People can be upset because they have a roommate or a staff member they don’t like, Bowman points out. Having a consistent, small team of caregivers who come to know the individual is fundamental to receiving good care, she stresses.
In general, though, long-term care facilities do not want to discharge people. “They represent revenue,” Bowman adds.
Dr. David Gifford, chief medical officer of the American Health Care Association, a nursing home trade group, says involuntary discharges are “an issue [our members] really grapple with, because it’s very upsetting when you can’t continue to care for an individual in your building.”
But there is a subset of people with dementia who have extreme problems that most nursing homes are unable to handle, Gifford says.
“Some people with dementia lose their ability to control themselves in socially appropriate ways, and they become intrusive in other people’s lives. Occasionally, those behaviors lead to really unfortunate situations where they harm, or are likely to harm, other residents or themselves. What leads to involuntary discharge is often when they become sexually aggressive or they can’t control their impulses, so they’re hitting other residents,” he says.
In such cases, the resident will be told to leave. Unfortunately, nursing homes that specialize in caring for people with extreme cognitive or mental health problems are few and far between.
What Families Can Do
When moving a loved one to a long-term care facility, families and residents need to have realistic expectations, Bowman says. Sometimes a nursing home or other facility works well for the person for a while, but as the condition and needs change, the home is no longer a good fit.
“Mom or Dad may change due to depression, or (trauma) from (some other time) in their life, or dementia. And now where they’re living is not equipped to handle these,” Bowman says. “It’s nobody’s fault.”
In many cases, nursing homes will convince the family to move their loved one before issuing a formal discharge letter. Families may voluntarily comply, they may agree it’s not a good match or they may feel the home will not provide good care under the circumstances.
But if a formal discharge letter is sent, saying the family has 30 days to move the person, there are several steps to take.
The first is to contact the long-term care ombudsman. If regulations are being followed, the nursing home should have sent a copy of the letter to the ombudsman at the same time as the resident.
The ombudsman should be your advocate, although this is not always the case. For example, Redhead felt the ombudsman “was in bed with the nursing home.”
Ask the ombudsman what assessments have been conducted and what measures the care facility took to ameliorate the difficulty. Find out what services the staffers say they are unable to provide, and ask if the new place has them.
If you feel the discharge is unfair and not in your loved one’s interest, appeal the decision to the facility.
“The facility has a responsibility to meet the needs of the individual,” Smetanka says. “If they accept a person, essentially, they are saying they are able to meet those needs. They cannot ask a resident to waive their rights. They can’t say, ‘because of your dementia, if you become combative, we’ll discharge you.’
“If they can’t provide a specific type of service, such as a ventilator, they can’t accept (the prospective resident) and they have to tell you that,” Smetanka continues. “Dementia is not one of those special diagnoses. It’s one that nursing homes should be prepared to care for.”
Next Avenue Editors Also Recommend:
- Nursing Home Ratings: Who Can You Trust?
- Despite Their Importance, Many Nursing Homes Lack Social Workers
- This Activities Program Engages and Calms People With Dementia
Next Avenue brings you stories that are inspiring and change lives. We know that because we hear it from our readers every single day. One reader says,
"Every time I read a post, I feel like I'm able to take a single, clear lesson away from it, which is why I think it's so great."
Your generous donation will help us continue to bring you the information you care about. Every dollar donated allows us to remain a free and accessible public service. What story will you help make possible?