Since March, and in the tidal wave of the pandemic, many of our relatives have been in the lockdown grip of nursing homes. These long-term care facilities take care of our Hoosier loved ones who are young and disabled, elderly with dementia, impacted by unforeseen events like brain injury, stroke or other degenerative diseases that require a new level of “skilled” care beyond the scope of family care.
By the numbers:
• More than 15,000 nursing facilities in the U.S. care for more than 1.3 million people on any given day, most of them elderly.
• One of every 10 Americans over the age of 85 is a nursing home resident and nearly a third of older Americans spend time in a nursing home in their final months of life.
• In Indiana, only 20 of 546 nursing homes have received an overall rating of 5 out of 5 (the top score) by U.S. News & World Report.
• By August, it was reported that nursing homes accounted for more than 60 percent of all deaths in Indiana – all the while as families were locked out.
Indiana families have been locked out entirely or limited to minimal outdoor visits of less than 30 minutes – peeking through windows, barred at a distance by hand-made plexiglass barriers, parked in driveways as delivery trucks come and go with zero privacy. The shared photos and stories of the toll these months have taken are heartbreaking. Families have snapped mobile phone photos of family members who are propped up, unresponsive, depressed and “failing to thrive.”
Medical authorities have long documented how this type of isolation affects the physical and mental health of our elders. In the meantime, the much-needed layer of in-facility oversight by families has evaporated during the lockdown. In most cases, the state-designated ombudsmen – who would ordinarily respond to complaints about care – are denied in-person access.
Now, we have a slight change in direction. The federal government issued guidance (https://www.cms.gov/files/document/qso-20-39-nh.pdf) on Sept. 17 stating nursing homes should provide both outdoor and indoor visitation or face potential penalties. Indiana Caregivers for Compromise, which has recently started organizing and speaking up, weighed in on the new federal guidance and stated that it won’t work without penalties. We plan to hold the federal government, and subsequently state regulators, accountable in that measure.
There are several basic parameters to the guidelines, mostly focusing on rates of local infection, prevention and testing practices in facilities and tracking. But the one that makes the most sense to us is this one: Visitation should be “person centered” and facilities should ensure visits are conducted with privacy. Penalties are also part of the equation with denied access.
While the government has stated facilities cannot restrict visitation without a reasonable clinical or safety cause, it will still be incumbent upon exhausted families to make it so. There is no automatic right of appeal. So, it is still up to families to continue to document their complaints, file them with the state, and make these details – and their stories – part of the public record.
As caregiver groups continue to independently organize in the U.S. triggered by the pandemic lockout, you will witness a larger scale movement to hold nursing homes and their owners accountable. We are losing people – not just to COVID-19, but also due to separation from families and the loving care and touch only they can provide. Like everyone else, we are working through the pandemic. But we will not be shut out – and we will be working to make safe visitation a reality before more are lost.
(If you have a loved one in long-term care, look for Caregivers for Compromise groups on Facebook. All state groups are public. This letter was also copied to members of the Public Health Committee in the Indiana House of Representatives and the Health and Provider Services Committee in the Indiana Senate.)
Vickie Ayres, Bringhurst, IN
Kyle Niederpruem, Indianapolis, IN, Administrators of Indiana Caregivers for Compromise