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En español | As the coronavirus ravages the country's nursing homes, those with loved ones on the inside are wondering where to go for help with concerns or complaints about a long-term care facility.
The answer may be your nearest long-term care ombudsman. Every state — plus Puerto Rico, Guam and the District of Columbia — has a long-term care ombudsman office that works to promote and protect the rights of residents in nursing homes, assisted living facilities and other residential care communities. The offices work with residents to address problems related to their health, safety and rights. If a resident, family member, representative or staff member is worried about a resident's care, they can file a complaint with the ombudsman's office.
With COVID-19 killing more than 17,000 nursing home residents and staff members and infecting tens of thousands more, the offices are getting more attention.
"We're busy in normal times. This is insane,” says Mark Miller, state long-term care (LTC) ombudsman of the District of Columbia and president of the National Association of State Ombudsman Programs. Questions and complaints related to COVID-19 are skyrocketing, he says: “There's no running from it.… And to be honest, we're concerned.”
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Before the pandemic closed nursing homes to almost all visitors, ombudsmen were in nursing homes frequently.
"Our bread and butter, what we do every day, is visit facilities, talk and meet with residents, get to know them, build trust and rapport with them, then gather information as to what their concerns are about,” says Patricia Hunter, the LTC ombudsman for Washington state. With permission from the resident to act on a complaint, which can range from subpar food to claims of neglect and abuse, ombudsmen will investigate the issue and work to resolve it. Their services are free of charge and, if desired, confidential.
More than 1,000 paid staff and 6,000 certified volunteers form the Long-Term Care Ombudsman Program, which is funded by the federal Administration on Aging. Established in the 1970s under the Older Americans Act, the program is government-funded but works explicitly for long-term care residents. “We don't have the trappings of big government agencies,” says Hunter. “We have independence, which is critical.”
State offices varies in size, based on the number of facilities, and most are broken into regions, with a designated ombudsman for each. The most recent data on the national program shows they investigated just under 200,000 formal complaints in 2018. They provided information to an additional 400,000 people inquiring about long-term care.
In addressing complaints, “we're always going to try low-level problem solving first,” says Hunter. “That might entail literally just a phone call or email, or it might involve getting everyone together — the resident, their family member, nursing staff, physical therapist, whoever needs to be involved — to implement a plan going forward that is going to support the resident and their needs.”
If that doesn't work, or if a facility refuses to cooperate, or if a complaint is particularly egregious, ombudsmen can refer complaints to higher-level regulatory or enforcement agencies with permission from the resident. Ombudsmen lack enforcement power, but they can refer cases to the state's health department overseeing nursing home licensing, adult protective services, the police or the courts.
Problem-solving in a pandemic
The pandemic is making ombudsmen's jobs much harder. Like families, friends and representatives of senior care residents, they've been barred by the federal government from entering facilities in most cases, to protect residents and staff. Ombudsmen also want to protect themselves — most volunteers for the program are older, putting them at greater risk for COVID-19.
"It's a huge hurdle,” says Miller, who is also manager of AARP's Legal Counsel for the Elderly, which provides free legal help to D.C. residents. “Generally, when you do any investigation, you're physically there getting eyes on the situation, looking at records, interviewing staff. Trying to solve the issue telephonically is much more difficult."
Nonetheless, complaints keep coming in and investigations continue.
In New York, for example, many families are struggling to reach facilities with questions about their COVID-19 response plans. So ombudsmen there are requiring facilities to fill out questionnaires asking “how they're managing during the crisis, how they're interacting with residents, what activities they're providing, how they're managing meals, how they're managing with” personal protective equipment, says state ombudsman Claudette Royal.
Ombudsmen relay the information back to families, sometimes arranging virtual follow-up meetings between families and facilities, Royal says.
In D.C., residents are calling in feeling scared or lonely, Miller says. So ombudsmen are conducting weekly telephone or FaceTime calls with residents, asking a series of questions about their care and facilities’ infection-control practices. They're also scheduling window visits with residents.
Washington's office is receiving complaints about facilities refusing to allow hospice services in, Hunter says. “There's a potential violation of rights there,” she says, “so we're looking at all the legal options … and I'm not afraid to use them if I have to."
Advocating for systemic fixes
Beyond handling individual complaints, many ombudsmen advocate at local, state and national levels for systemic improvements to long-term care. Each state's priorities vary amid the pandemic, but many are advocating for more timely reporting from facilities on their confirmed COVID-19 cases.
"It's everyone's top question right now: What's the level of outbreak?” Miller says. “And the lack of transparency and public information about that is concerning.”
AARP is pushing for states and the Centers for Medicare & Medicaid Services to require the names of facilities with confirmed cases to be made public daily.
"We believe that data shared on a daily basis, coupled with virtual visitation, will allow both ombudsmen and families to gain a better insight into what really are the circumstances within those facilities,” says Elaine Ryan, AARP vice president for state advocacy and strategy integration.
What to do if you have a nursing home complaint or concern
1. Try contacting the facility first, via phone or email. It may be able to directly address your complaint or query quicker than an ombudsman can. Before contacting the facility, learn as much as you can about the situation and be ready to clearly articulate your questions or complaints. Ask about the best way to maintain contact with the facility going forward. Take good notes, including the names of those with whom you've spoken.
2. If unsuccessful, reach out to your ombudsman. "No question is too big or small,” Hunter says. “The beauty of the ombudsman program is that we're a jack of all trades.” If an ombudsman can't address your query or complaint, you will be directed to someone who can. Also visit the National LTC Ombudsman Program Resource Center, which has up-to-date information on LTC regulations, guidance and ombudsman outreach during the pandemic.
3. Be persistent. Although there will be no delay in the office getting back to you, a lack of access to facilities is making investigations more difficult for ombudsmen. If an issue persists, you can file a complaint with your state survey agency, which inspects nursing homes to determine if they comply with Centers for Medicare & Medicaid Services regulations.