AARP Answers: Nursing Homes and the Coronavirus

The latest on evolving rules, visiting loved ones, your rights and more

A woman sitting in a wheelchair in her nursing home room

Why are nursing homes so vulnerable to COVID-19?

People age 65 and older are at higher risk for COVID-19, the disease caused by the new coronavirus. So are people with chronic medical conditions such as heart disease, diabetes, kidney disease and respiratory illness. Both groups are heavily represented among the nation’s 1.3 million nursing home residents.

That concentration is a key reason why 2 in 5 U.S. deaths from COVID-19 have occurred in nursing homes and other long-term care facilities, according to tracking by the Kaiser Family Foundation, but it’s not the only one. Certain conditions at nursing homes can exacerbate the spread of the disease:

  • shortages of coronavirus tests
  • shortages of or lack of access to personal protective equipment (PPE) such as masks and gowns
  • frequent physical contact between residents and staff
  • understaffing
  • employees who work in multiple facilities, increasing chances for exposure
  • residents sharing rooms
  • transfers of residents from hospitals and other settings

These factors make nursing homes potential breeding grounds for viral and bacterial diseases, especially given  chronic problems with infection control that predate the pandemic. According to a recent federal report, 4 in 5 nursing homes surveyed between 2013 and 2017 were cited for deficiencies in infection prevention and control. Half were cited more than once during that time.

What’s being done about it?

The Centers for Medicare & Medicaid Services (CMS) and the Centers for Disease Control and Prevention (CDC) have issued guidance on reducing the spread of COVID-19 in nursing homes. Facilities have been instructed to:

  • strictly limit visitation
  • suspend communal dining and group activities for residents
  • screen residents daily for fever and other COVID-19 symptoms
  • screen anyone entering the building for symptoms and observe flexible sick-leave policies for staff members
  • require staff to wear masks

If the disease is identified at a nursing home, the federal agencies urge the facility to restrict residents to their rooms; require health care staff to wear gowns, gloves, eye protection, and N95 or medical masks; and treat suspected and confirmed COVID-19 patients in a designated area, away from other residents.

The CMS is requiring facilities to quickly alert residents, their families or representatives, and the CDC about new COVID-19 cases. The agency is also posting data, updated weekly, on coronavirus case counts at the national, state and individual nursing home level, and in May it announced tougher rules on infection-control inspections and enforcement.

AARP is pushing for policies and legislation at the federal and state level to require more transparency around coronavirus cases in nursing homes and more support for virtual visits between residents and loved ones. The organization is calling on Congress to address the shortage of staff, personal protective equipment and tests in facilities.

Can I visit my loved one in a nursing home?

Most senior-living facilities are effectively in lockdown, with building entry restricted to essential staff, health care workers and vendors. Under CMS guidelines, outside visitors can come only in “compassionate care situations,” such as when a resident is near death. The CMS issued recommendations on May 18 aimed at helping state and local authorities determine when and how to resume visitation, but progress is likely to be slow. 

A number of states, including Connecticut, Illinois, Indiana, Maryland, Massachusetts, Minnesota, Missouri, North Dakota, Oklahoma, Vermont and Wisconsin, have authorized nursing homes that meet benchmarks for coronavirus testing and case counts to allow visits in designated outdoor spaces as a transitional step, with strict rules for distancing, face-covering and sanitizing. Studies have shown the risk of coronavirus transmission is considerably lower outside. 

In the meantime, the best way to “see” your loved ones during this period is through video-chat and conferencing platforms like ZoomFaceTime and Skype. AARP is advocating stronger measures by Congress and state governments to require nursing homes to facilitate virtual visitation during the pandemic and has endorsed the federal ACCESS (Advancing Connectivity during the Coronavirus to Ensure Support for Seniors) Act, which would provide grants for nursing homes to buy tech tools and services to support virtual visits. Phone calls are another option to speak with residents.

What can I do to support my loved one?

Stay connected. It’s crucial for your loved one’s well-being, physically and emotionally. Isolation “can have very real and serious health impacts” for nursing home residents, says Megan O’Reilly, AARP’s vice president of health and family.

If you haven’t already established ways to visit virtually, ask the nursing home what it can do to facilitate communication. Does it have tablets residents can use for televisits? Can staff help those who have mobile devices but aren’t familiar with video-chat apps?

Use tech to do more than just check in. With smartphone cameras and video apps, you can take a locked-down loved one for a walk in the woods, share a virtual meal or watch a movie together. Also think about non-digital ways to boost morale, like sending handwritten cards or arranging a delivery from their favorite restaurant. (Not all facilities may allow this, so check first.)

You can also support loved ones by staying informed about what’s going on at their facility. Identify a point of contact on staff for when you have questions and concerns. AARP has a list of six key questions to ask about circumstances at your loved one’s nursing home.

Will the nursing home tell me if people there are infected?

The CMS has announced it will require nursing homes to tell residents and their families or representatives within 12 hours if a COVID-19 case is confirmed on-site. The information must also be reported to the CDC. Some states have made public the names of nursing homes with cases, but not all states are doing so.

AARP and other advocates for seniors say the CMS guidance does not go far enough and are demanding greater transparency and accountability at both the federal and state level. “This information is critical to share with residents and their loved ones and facility staff so that they can make informed decisions about their health and safety,” says Elaine Ryan, AARP’s vice president of state advocacy and strategy integration.

Don’t be shy about contacting the nursing home to ask if it’s had cases and deaths and about what protective measures they’re taking. If the facility is not forthcoming or if you have a concern or complaint, contact your state’s long-term care ombudsman.

How are nursing homes regulated?

They are regulated by the federal government, specifically the Centers for Medicare & Medicaid Services, in collaboration with the states. State survey agencies conduct inspections of nursing homes on behalf of the CMS to check that they comply with federal laws and standards in areas such as staffing, hygiene, record keeping, and residents’ care and supervision. Facilities must be deemed compliant to be certified by the CMS and eligible for payments from Medicare and Medicaid. State surveyors also ensure compliance with state laws, which frequently go beyond federal requirements.

Last year, the CMS proposed rolling back what it deemed “excessively burdensome regulations” on nursing homes. The proposals, which have not yet been finalized, include relaxing rules on documenting grievances and investigations; requiring facilities to conduct assessments of staff and resource needs every two years, rather than annually; and allowing them to use consultants for infection prevention rather than hiring at least one part-time staff member for that purpose.

AARP and other advocates for seniors have voiced opposition to many of the proposals.

What if I have a complaint or concern?

First, try talking to the nursing home. Learn as much as you can about the situation you want to address and have specific questions ready. AARP has extensive coverage on the crisis in nursing homes and resources on broader issues in long-term care.

If the facility is not responsive, reach out to your state’s long-term care ombudsman. Ombudsmen programs were established by the federal Older Americans Act in all 50 states, plus the District of Columbia, Puerto Rico and Guam, to address problems related to the health, safety, welfare and rights of residents of nursing homes and long-term care communities.

Staff and volunteers at ombudsmen offices work to advocate for residents of long-term care facilities, and to investigate and resolve complaints. AARP has a directory where you can find contact information and a website link for your state ombudsman.

If an issue persists, you can file a complaint with your state survey agency, which inspects nursing homes to determine if they comply with CMS regulations. Keep in mind that infection control is getting priority attention, so other concerns may take longer to resolve.

What are nursing home residents’ rights?

The CMS has a list of residents’ rights and protections under federal and state laws. Broadly speaking, these include the right to:

  • be treated with dignity and respect
  • be free from abuse, neglect and discrimination
  • have friends and family visit and participate in your care
  • take part in activities
  • make complaints without fear of punishment
  • receive proper medical care
  • have a doctor, family member or legal representative notified of changes in your condition or treatment

Keep in mind that state statutes on resident rights often go beyond federal rights. But rights related to visitation and activities are being restricted as part of efforts to curb the spread of COVID-19. The National Consumer Voice for Quality Long Term Care, an advocacy group that focuses on care issues, has a fact sheet on how the pandemic is affecting rights and rules in nursing homes.

Should I consider taking my loved one out of a nursing home?

There is no one-size-fits-all answer. Some individuals and families may decide that it makes sense for a spouse, parent or other loved one to come home during the pandemic, particularly if there are COVID-19 cases at their facility. But the reality is that some nursing home residents have medical or other needs beyond what can be provided at home. Ask your loved one’s medical provider for advice before making a move.

Here are some questions to consider:

  • How is the facility handling the coronavirus? For example, are residents and staff being tested? Are there confirmed cases among them? Do staff have PPE? Are staffing levels adequate?
  • What type and level of care does your loved one need, and are you able to provide it?
  • Is in-home care available during the pandemic?
  • Can your home accommodate a loved one with mobility issues or dementia? For example, is there a ground-floor bedroom if they can’t use stairs, or ways to guard against wandering?
  • Will your loved one be able to return to the nursing home? Many residents rely on Medicaid to help cover their long-term care costs, and leaving a facility can affect eligibility.

If you’re concerned about the safety and well-being of a loved one in a nursing home or other senior living facility, contact your state’s long-term care ombudsman.

Do these answers apply to other long-term-care facilities, like assisted living?

Many assisted living facilities and senior care communities have implemented lockdowns and other restrictions to combat COVID-19. The CDC has issued recommendations for assisted living that mirror much of its guidance for nursing homes on controlling the disease, including no outside visitors or group activities and regular screening of staff for symptoms.

Unlike nursing homes, however, assisted living facilities are generally not subject to federal oversight. For example, the CMS rules on disclosing COVID-19 cases to residents and family members do not apply to assisted living facilities. They are licensed by the states, many of which have not issued disclosure orders, and regulation varies by state.

If you have a loved one at an assisted living community and have questions or concerns about its COVID-19 caseload and response, contact the facility and ask to speak to an administrator. You can also bring issues to your state’s department of health, department of health and human services, or department of aging.

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