Fighting for the Essential Caregivers Act on the steps of the U.S. Capitol

Fighting for the Essential Caregivers Act on the steps of the U.S. Capitol

Who We Are

and

How the Essential Caregiver Movement Was Born

The Essential Caregiver Movement is a group of state grassroots advocacy leaders fighting for the designation of an essential caregiver for long term care residents and the restoration of those residents’ rights. Collectively, we represent hundreds of thousands of families and residents living in long term care.

 
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But Who Are We, Really?

We are the children, spouses, parents, siblings, etc. of loved ones living in nursing homes, assisted living facilities, independent living facilities, memory care units and more. On March 13, 2020, we were locked out without warning and have been kept out for over a year. We are essential caregivers; the people who visited multiple times a week, sometimes daily, to trim their nails, take them out on walks, track down their missing belongings, report their abuse, watch over their well being and guarantee their quality of life. We are everything that connects them to their life outside of institutional living. We are their voice. 

When the doors shut, we did what anyone would do when they are cut off from their loved one… we panicked. Across the nation, hundreds of thousands of us frantically called facilities desperate to understand what was happening. When there were no answers, we called our state Departments of Health demanding to know how to reconnect with our loved ones. And when that failed, we called our governors. And our legislators. And the press. We are still calling.

This is how we found each other on Facebook and started a movement. Thousands of families in crisis, unable to see or speak with their loved ones, some watching them die through windows, gathered on social media to find answers and support. Through this flood of need, we found ways to educate ourselves, forge relationships, build armies and launch campaigns.

A sea of yellow ‘Isolation Kills, Too!’ signs moved across the U.S.

A sea of yellow ‘Isolation Kills, Too!’ signs moved across the U.S.

Grassroots groups formed in various states, bonded together in their push to drive policy and legislation to allow access for Essential Caregivers. This worked, to some degree, in a few states: AR, CT, IN, ND, NJ, NY, PA, SD and TX. The rest are still trying. None of it is the solution we need. 

In the beginning of 2021, leaders from seventeen states came together to form the Essential Caregiver Movement. We recognized that we were effective at the state level and would only be able to amplify our strength if we worked together. The week of March 8, 2021, our collective memberships sent hundreds of thousands of letters in yellow envelopes to state and federal agencies, participated in a traveling lawn sign campaign across five states, rallied at thirteen state capitols and held memorial vigils—all to acknowledge the year anniversary of the long term care lockdown, honor the lives lost and call for a reissuing of guidance. Our work was featured in over 40 news articles and stories across the nation and on March 10th, the Centers for Medicare and Medicaid Services reissued their visitation guidance; calling out specific attention to “person-centered care” and stating facilities “must” allow indoor visitation.

Today, in addition to supporting our group members through a second phase of lockdown, our work is to get the federal Essential Caregivers Act (H.R. 3733) passed. This is a monumental task as ever there was one. We are not lobbyists. We are not policy makers. We are not even political scholars. We are school teachers, writers, bank employees, retired city workers. We run church groups, book clubs and Alzheimer ministries. We are simple American citizens trying to save our loved ones on our own dime and driven by our determination to end isolation for all. Our biggest weakness is also our greatest strength: we have no idea what is impossible, therefore to us, everything is possible.

Texas Caregivers for Compromise leader, Mary Nichols testifying before the TX Senate on behalf of Essential Caregivers.

Texas Caregivers for Compromise leader, Mary Nichols testifying before the TX Senate on behalf of Essential Caregivers.

We have…

  • passed state legislation

  • participated on task forces

  • helped develop state emergency visitation guidelines and long-term care policies

  • built on-going working relationships with state and national legislators, agencies, commissions, departments, provider groups, and government staff members

  • testified in state hearings

  • written state and federal bill language

  • spoke on the steps of the U. S. Capitol

  • presented before the staff and members of the House of Representatives

  • had our stories read on the House floor and submitted to the Congressional Record

    Every one of us has been profiled multiple times in various state and national news stories and reports, including several of us featured in the March 2021 Human Rights Watch report, “US: Concerns of Neglect in Nursing Homes: Pandemic Exposes Need for Improvements in Staffing, Oversight, Accountability”.

    We are a bipartisan citizen movement and we are just getting started.