As we all know, with no warning in March 2020, visitors were no longer allowed in LTC communities as mandated by the federal government. The only exceptions initially made were for end-of-life visits. Then with the OK of the federal government, NJ began allowing compassionate care visits in the summer of 2020. The problem with compassionate care visits as defined was this type of visit could not be “routine”, which meant many facilities interpreted a compassionate care visit as a one off. Even this changed when additional constraints on visits were put in place during an outbreak at a facility.
As advocates, the LTCO office understood that the purpose of compassionate care had to go beyond people who were not eating, were increasingly passive and not engaged. Visits needed to be regular in order to sustain and nourish the soul. In response to concerns from the LTCO and family groups, the NJ Department of Health in August 2020 created a new category of visitor: essential caregivers.
Essential caregivers were an attempt to carve out ways for families to come back into their loved one’s life. A product of COVID-19 and emergency services, essential caregivers were defined as those who provided essential care before lockdown. The term was associated to caregiving tasks like personal grooming, organizing clothes, cleaning out the refrigerator or getting residents to eat.
Unfortunately, because it was tasked focused, families had to jump through hoops to be designated as essential caregivers. A family member had to give the facility a laundry list of tasks they would perform before coming in as an essential caregiver. Then it became an issue when essential caregivers were denied entry because “Your mother (with dementia) doesn’t ask for you.” Fortunately, NJ updated visitation requirements as of March 22, 2021 to include all types of visitors, even those who are not technically providing care or accomplishing an established list of tasks on behalf of the resident.
We are at a tipping point in our health care system and how we will care for our most vulnerable. There will always be the need for people to live in Skilled Nursing or Assisted Living facilities. If you are currently looking to place your loved one, pay close attention to staffing levels. Right now, the census (number of “heads in beds”) is down. When census is down, it is important to pay attention to staffing levels. Staff tends to let go in this situation. Not enough staff means problems like poorer incontinence care and not getting showered. To find staffing levels, look for the number of nursing hours in a facility on the Medicare and Medicaid (CMS) website. Just be careful because this federal data is backward looking. Assisted Living facilities are licensed by the state so you will not find these data points on the CMS site.
One outgrowth of this awful past year is that the breakdowns in these facilities, both in hands-on care and the need for socialization, are being reviewed at the federal and state level and by facilities.
“I hope we see better staffing ratios in every facility. Of course, what would help is a salary increase for the direct care worker. The work of Certified Nursing Assistants (CNA) and Home Health Aides (HHA) is literally back breaking work. They are rarely paid a living wage, offered healthcare benefits or sick leave. Business is having a hard time finding people to take on this work for these reasons. New Jersey has leaned into trying to reform the system with a new 1:8 staff ratio bill and additional funding to bump up salaries in this fiscal year’s budget.”
“What I would like to see happen is for facilities to mandate that workers get vaccinated. They are resistant to a mandate unless everyone agrees to it, afraid it will put them at a competitive disadvantage for hiring. My argument is that you could market 100% staff vaccination and wind-up gaining residents.”
“I would like to see more oversight of LTC facilities. The Department of Health does annual surveys but there should be more routine inspections. I’d also like to see more infection disease specialists in LTC. Also, I would like to see single room occupancy in skilled nursing facilities. The two to three people in a room is unacceptable in Skilled Nursing facilities when you are looking at a system where infectious disease can run rampant when an outbreak occurs. Currently, the census is about 67% where it normally would be 83-84% in these types of facilities. Families have an opportunity right now to advocate for single rooms where available.”
Laurie Facciarossa Brewer
NJ Long Term Care Ombudsman
If someone currently in a LTC facility would like to go home, the LTCO oversees the federal Medicaid program “Money Follows the Person”, known as “I Choose Home” in NJ. This national program moves people out of nursing homes or other institutions and helps them to live at home. The NJ LTCO markets this program, identifies residents who want to leave and then in partnership with the Department of Human Services, works to get them Medicaid-paid services in the home. The biggest barrier to this program is the lack of affordable housing in New Jersey which is in on top of not having enough housing vouchers. In addition, many individuals do not have family to support this move into a home.
However, many families are looking to keep their loved ones at home and trying to find support systems. Unfortunately, there is no office equivalent to the LTCO for people who want to age-in-place. The closest thing is adult protective services. If someone reports abuse or neglect for someone living at home, local police will involve adult protective services, which is a county-based system and they may remove them from the home. The Division of Aging Services (Office of Aging) does offer structural support but does not offer hands-on support.
“Coming out of the pandemic, I’d like to see more support for home – and community-based services, especially more community-based services to support people who want to age in place. This is a tough nut to crack because of the sheer number of people who would need these services. I was pleased to see the issue of bolstering the long-term care home- and community-based system addressed in the federal infrastructure bill that is being proposed. We need to make aging in place a reality in this country, not just a slogan.”
Laurie Facciarossa Brewer, NJ Long Term Care OmbudsmanFree 30 minute consulting call
Deb is the author of “Your Caregiver Relationship Contract.” This book explains how to have an intentional conversation and the how unspoken expectations can cause problems. Click here to learn more about Your Caregiver Relationship Contract.