According to the Pennsylvania Department of Health, there are more than 700 nursing homes housing over 80,000 residents throughout the commonwealth. Those residents require care and assistance that goes beyond the level of what can be given at home — but that doesn’t mean they don’t have the ability to make their own choices.
Nursing home residents have a wide variety of rights — as well as ombudsmen who help make sure those rights are being honored.
“We are accustomed to thinking that if you’re in a nursing home, you’re not able to make decisions,” says Lori Walsh, program manager at Philadelphia-based Center for Advocacy for the Rights and Interests of the Elderly (CARIE). “It’s really important for residents to be allowed the opportunity to make an informed decision the way we do.”
So what are your rights if you’re a nursing home resident, and whom should you contact if you feel those rights have been violated? Here is what you need to know:
What rights do nursing home residents have?
The various rights for nursing home residents are actually provided in federal law as part of the Nursing Home Reform Act of 1987, which requires facilities to “protect and promote the rights of each resident.” Facilities are also required to have postings about resident rights in prominent areas and provide residents with documents detailing those rights upon admission.
While those rights are numerous, the National Consumer Voice for Quality Long-Term Care — an advocacy organization that works on behalf of long-term care consumers — breaks them down into several categories, including rights to:
Be informed of services, care, risks and benefits of treatment, and facility rules and regulations
Raise grievances without fear of retaliation
Direct your own care, such as by refusing medication or treatment
Personal, medical, and financial privacy
Dignity and self-determination, including freedom from physical and mental abuse
Have or refuse visitors of any kind
Make independent choices, ranging from what you wear to who your physician is
Remain in a facility unless transferred or discharged, which should only happen under a few circumstances, and includes a 30-day notice and the right to an appeal
In general, Walsh says, resident rights put a focus on having a “person-centered approach” to nursing home care, and shift away from older, more medically focused models. Residents should be able to live as normally as possible, and even make bad decisions if they choose to — like, say, sipping a soda despite being diabetic.
“We all don’t necessarily make the best decisions for ourselves, but just because you need nursing home care doesn’t mean you’ve given up the right to make bad choices.”
Who can help if those rights have been violated?
If you’re a nursing home resident who feels your rights have been violated — or if you are a family member of a resident who needs help — the first thing you should do is contact your Local Long-Term Care Ombudsman Program. Each county in Pennsylvania has its own ombudsman program, and the state’s overall ombudsman program is co-housed under the Department of Aging and the Office of Advocacy and Reform.
Locally, the providers are CARIE for Center City, North, South, West, and Southwest Philly, and Center in the Park for Northeast and Northwest Philly. But if you need help figuring out who to go to, you can contact Pennsylvania’s Long-Term Care Ombudsman Office at 717-783-8975, and they can connect you with your local program. However, the nursing home that you or your loved one is in should have postings about the right agency.
Ombudsmen deal with all kinds of issues, including potential rights violations, says Kimberly Shetler, an ombudsman specialist with the state’s ombudsman office. But in general, they are there to advocate for long-term care consumers, help resolve issues, inform you of your rights, and connect you with the resources and information. They can either help you fix the problem yourself, or intervene and try to come to a solution with the facility on your behalf.
“If the resident has a concern and they want ombudsman assistance, we will investigate and see if it’s an individual problem or more of a system problem in the facility,” Shetler says. “Then, our goal is to resolve that complaint by mediating and negotiating with the facility to come up with an amicable solution for both parties.”
Ombudsmen can also connect you to outside resources if you come to an impasse. Options include filing a complaint with the Department of Health or contacting Medicare, but it depends on the individual situation.
“We have a lot of creative fixes at our disposal,” she says.
How has COVID-19 impacted nursing home residents’ rights?
Just about everything has been altered by COVID-19 in some way, and the rights of nursing home residents are no different. The issue, Shetler says, is balancing the rights of residents to assume risk and their right to be kept safe — a longtime ethical dilemma in nursing homes that has been intensified by the pandemic.
“Residents need to know that there are some of their rights right now that are kind of superseded by a pandemic because of the situation that we are in,” Shetler says. “We are doing our best to advocate for them to exercise their rights to the greatest potential they can under the circumstances.”
In Pennsylvania, the ombudsman program is seeing most complaints in reference to care, autonomy, choice, and exercise of rights for residents, and admission, discharge, and transfer issues. Those categories include elements like visitation — one of the biggest issues amid the pandemic — and cohorting, which allows facilities to move residents to create COVID-19 wings, or convert entire homes into COVID-19-positive locations.
Resident rights to visitation were largely suspended early on in the pandemic due to guidance from the Centers for Medicare and Medicaid Services (CMS), which creates federal regulations for nursing facilities. Initially, CMS guidance essentially shut down nursing homes to visitors, save for residents in “compassionate care” — or end-of-life — situations. That guidance, however, has since been expanded to include a wider range of people, such as those who are struggling with social isolation.
Ordinarily, residents also would have the right to receive a 30-day notice of a discharge or transfer, and be able to appeal that decision if they disagreed with it. Now, however, that’s not necessarily the case.
“If they’re being moved as a result of COVID-19, there really is not anything we can do to appeal that move,” Shetler says. “We certainly advocate for that to happen as little as possible, and to keep things as normal as they can for folks. Right now, that’s not one of things you can fight too hard.”
Lori Walsh, program manager at the Center for Advocacy for the Rights and Interests of the Elderly.
Kimberly Shetler, ombudsman specialist with Pennsylvania’s Long-Term Care Ombudsman Office