Federal law gives nursing home residents the right to “immediate access” to their immediate family and other relatives, 24 hours per day seven days per week[1] and immediate access to others they want to see.[2] Families are critical to the daily operations of nursing homes. They participate in assessment and care planning, help provide care and emotional support to their loved one, and inform staff of issues and problems. The public oversight system also relies on families to talk with state surveyors and to file complaints with the state department of health or federal government, as needed. Many family complaints alert government officials to the most serious problems in nursing facilities.
However, when the public health emergency was announced in March 2020, families were absolutely and completely barred from facilities.[3] Residents were isolated in their rooms. Families and studies reported enormous physical and mental declines in residents as a result of isolation, loneliness, and neglect. Many residents died alone.
Although the Centers for Medicare & Medicaid Services (CMS) lifted the ban a year later, in March 2021,[4] the ban on families continues, in actual practice, in far too many facilities. Many facilities, even now, continue to limit the frequency and duration of visits, telling families that they can visit for 40 minutes once or twice a week and not at all on weekends.
Families organized at the state level and formed a variety of groups, such as the Essential Caregivers Coalition, and successfully supported state laws and executive orders recognizing the principle of essential caregivers – people who perform critical functions for residents and must be allowed to be present, even during a public health emergency.
Federal legislation, the Essential Caregivers Act, H.R. 3733, has now been introduced in Congress. The bipartisan legislation says unequivocally that the government cannot ever again totally ban families. Regardless of any public health emergency, the bill guarantees that all residents can choose up to two people as essential caregivers who can provide them with assistance 12 hours each day and for an unlimited number of hours at the end of a resident’s life.
At a June 30, 2021 press conference,[5] the legislation was introduced by its original sponsors, Congresswoman Claudia Tenney (R-NY) and Congressmen John Larson (D-CT) and John Rutherford (R-FL). Family members spoke movingly about the suffering of their parents and loved ones. Center for Medicare Advocacy’s Senior Policy Attorney Toby S. Edelman participated in the roundtable discussion[6] later on June 30 that continued the discussion.[7]
The Center supports H.R. 3733, the Essential Caregivers Act.
July 1, 2021 – T. Edelman
[1] 42 C.F.R. §483.10(f)(4)(ii)
[2] 42 C.F.R. §483.10(f)(4)(iii) provides “immediate access” to “others visiting with the consent of the resident, subject to reasonable clinical and safety restrictions and the resident’s right to deny or withdraw consent at any time.”
[3] CMS, “Guidance for Infection Control and Prevention of Coronavirus Disease 2019 (COVID-19) in Nursing Homes,” QSO-20-14-NH (Mar. 13, 2020), https://www.cms.gov/files/document/qso-20-14-nh-revised.pdf
[4] CMS, “Nursing Home Visitation – COVID-19 (REVISED),” QSO-20-39-NH (rev. Mar. 10, 2021), https://www.cms.gov/files/document/qso-20-39-nh-revised.pdf
[5] The full press conference is available at https://www.youtube.com/watch?v=7LPaOos5e_Q
[6] The roundtable discussion is available at https://www.youtube.com/watch?v=RjgZxJQTGvQ
[7] The Center’s statement is available at https://medicareadvocacy.org/wp-content/uploads/2021/07/Nursing-homes-Essential-Caregivers-Roundtable-06.30.2021.pdf