Update 7/17/22: The Essential Caregivers Program will be law as of 8/28/22!
It is no secret that nursing homes became a place of intense isolation during the COVID-19 pandemic. When everyone felt alone and isolated, long-term care residents were left in understaffed facilities where even their basic needs were not being met. Many stories arose of residents being given meals without the assistance they needed to eat, being left in wheelchairs or beds, and too many residents dying from deterioration from intense isolation.
Attempts were made to combat isolation and ensure quality care but often failed to achieve their goal. Some family members tried making window visits in an effort to see their loved ones at a safe distance, which often left the resident confused and hurt that their loved ones would not come inside. Other families tried connecting through video and phone calls, only to realize there was not enough staff in the facility to help facilitate these calls. While measures such as cameras in nursing homes have been implemented to help family members keep an eye on loved ones, it does not help ensure residents receive all the care they need. But an Essential Caregivers Program could.
Missouri currently has an incredible opportunity to pass legislation to ensure residents are never again left isolated in their nursing homes. With only one week left of the legislative session, we must ensure lawmakers voice their support for the Essential Caregivers Program.
What is an Essential Caregiver
Essential caregivers are individuals designated by a long-term care resident to visit the facility during periods of restricted visitation like we saw during COVID. The essential caregiver role has the potential to provide protection and relief to both staff and residents by filling three primary functions: routine caregiving, isolation reduction, and serving as a resident advocate.
A resident’s care needs can take many forms. Ranging from basic hygiene such as mouth care, bathing, toileting, and grooming to routines such as helping with eating, drinking, and mobility. All are necessary elements of care that nursing homes struggled to provide adequately during the height of the COVID pandemic. Based on the most recent data from the Centers for Medicare and Medicaid Services (CMS), Missouri ranks 50th in the nation for the number of care hours we provide per resident per day. On average, nursing home residents in Missouri only receive 2.99 hours of care per day. This number falls far short of the federal standard of 4.1 hours per day. Essential caregivers can help fill this gap by assisting with routine care and Activities of Daily Living.
In addition to improving care, essential caregivers can help prevent extreme isolation. For nearly 12 months, long-term care residents were confined to their bedrooms without social connections. To mitigate the spread of COVID, visits from loved ones were entirely cut off, and this sudden intense isolation brought severe consequences. Residents were experiencing high COVID death rates, but they were also dying from “failure to thrive,” a condition where a resident’s health suddenly declines due to unmet mental, physical, and emotional needs. This is a process that, under adequate circumstances, would take months to years, but in this environment where care is being rationed and basic needs go unmet only takes a matter of days to weeks.
Essential caregivers also can serve as an advocate for their loved ones’ care. Long-term care residents deal with many health and physical challenges and rely on nursing facility staff to meet their basic needs. When families and friends can not see their loved one, they are not able to recognize when those basic needs are being unmet. Allowing essential caregivers into facilities at a time when all other visitation has been restricted ensures that residents still have access to at least one person who can advocate for their needs. Essential caregivers often have a personal relationship with the residents and are keenly aware of health status changes or concerns about the resident. Essential caregivers can bring attention to the nursing staff of potential health and safety concerns, and residents can receive early intervention before health problems become more complicated.
SB 671- Essential Caregivers Program Act
The Essential Caregivers Program Act in Senate Bill (SB) 671 creates and defines the parameters and responsibilities of essential caregivers in nursing homes. First, a nursing home resident may select at least two people as their Essential Caregivers who, once approved, will then be added to the resident’s care team. Should there ever again be a time when facilities must restrict visitor access, this program would ensure that the residents retain their right to visitation by allowing the essential caregiver continued access to in-person visitation. Second, during this time, the facility will be required to establish an in-person visitation schedule with a minimum of four hours a day to ensure adequate time for caregiving and social connection. And third, procedures for these in-person visits, such as safety and security measures, will be set. For example, essential caregivers will be required to follow all safety procedures, public health standards, and infection control requirements, such as the use of Personal Protective Equipment. The Essential Caregivers Act is a bill that would not only promote residents’ well-being but could also relieve some of the pressure on nursing home staff. If you are interested in learning more about the Essential Caregivers Program Act or are interested in advocating for residents’ rights, check out VOYCE’s Policy and Advocacy page and consider registering to Become an Advocate.
Hello, do you have any volunteers that do inservices? I am with Center for Behavioral Health in Maryland Heights. We will be opening soon and are always looking for education 🙂
Hello, Melissa. VOYCE staff does speak and provide education. You can call 314-919-2411 to speak with Chien Hung, our Program Director and find out more about having someone come out and speak. You can read more about this here:
I reside at Jefferson City Manor. My roommate was left unchanged(she wears adult briefs). She has open areas on her buttocks. I’m concerned. She has not been out of bed for 2 days. She does not get turned in bed. She is diabetic and gave me permission for this information. Call bells may not get answered for up to 5 hours.
She was not changed for 12 hours
Thank you for reaching out, Mary. The Regional Ombudsman Coordinator for Jefferson City Manor is at a different agency than VOYCE. Below is the contact information for your Regional Ombudsman Coordinator. I would advise giving them a call to discuss your concerns.
Ronda Giger, Rebecca Baker
201 W. Broadway, Bldg. 1, Suite E
Columbia, MO 65203
(573) 443-5823 or (800) 369-5211
FAX: (573) 875-8907
I read some of your information, I have a question. My sister who lives in California has dementia. It is steadaly getting worse. She recently had COVID. She acted out violently to her roomate. She was very confused. She did not hurt the lady but still had to be put in isolation, Which made us all very sad. She had only one child who had been paying 1,000.00 more a month so she could stay in assisted living. Now to put her in a private room its going to be 1500.00 on top of that. Which she doesn’t have. She has reached out to the family but with limited resources ourselfes its going to be tough to meet. My question is what is she to do about this? Is there any federal programs or any programs she can apply for. Its a shame to leave her isolated and she wonders whats wrong and what did she do to deserve this. I believe each state is different on their laws. I get it and I’ve been try to research this. Hope you can give me some insight to this situation.
Hi, Sandra. I would advise starting with California’s ombudsman program. The long-term care ombudsman program is federally mandated, so all states have them. Here is some information about California’s program:
It looks like you can find more services by county here: