Founded Caregivers for Compromise – because isolation kills too! Facebook group that currently has over 14,000 members to serve as a place for caregivers who were separated from their loved ones in long-term care to come together for support and to advocate for change.
Founded Caregiver for Compromise – because isolation kills too! individual state groups for all 50 states since every single state was implementing different rules. The state groups have been influential in changing guidelines and establishing new legislation that allows visitation by essential caregivers.
Facebook group: Caregivers for Compromise
Appointed by Governor Ron DeSantis to his Task Force for the Safe and Limited Re-Opening of Long-Term Care Facilities. The Task Force members included:
- Dr. Scott Rivkees, State Surgeon General, Florida Department of Health
- Mary Mayhew, Secretary, Agency for Health Care Administration
- Richard Prudom, Secretary, Florida Department of Elder Affairs
- Gail Matillo, President and CEO, Florida Senior Living Association
- Emmett Reed, Executive Director, Florida Health Care Association
- Michelle Branham, Vice President of Public Policy, Alzheimer’s Association
Link from Task Force Meeting where I present our video at the 4:00 mark
Task Force recommendations were accepted by Governor DeSantis, a new Emergency Order was issued and Essential Caregivers were allowed back in long-term care facilities to care and most importantly, hug their loved ones.
Link from Task Force Press Conference – 4:51 mark
Advocacy efforts continued through the remainder of 2020 and into 2021 to educate facilities across the United States on the guidelines that they were required to follow. Educating our C4C members was important so that they could educate the long-term care facilities who were making their own rules. Our mantra became “Educate yourself so you can educate them.”
Traveling Signs
Caregivers for Compromise groups all over the nation planned events around the one year anniversary of the lockdown. In Florida we organized a traveling sign display of that started in Jacksonville, and then traveled to the grounds of the Florida Capital in Tallahassee, to Orlando and then to West Palm Beach. The signs each had the name of a resident who was isolated during the lockdown and represented just a small number of those impacted. Our purpose was to remind everyone that Isolation Kills Too!
In July I traveled to Washington, DC to come together with our Caregivers for Compromise leaders to speak at a press conference on the steps of the US Capital to introduce H.R. 3733, The Essential Caregiver Bill. I was joined by my Congressman, John Rutherford, an original co-sponsor of the bill.
In an effort to educate our federal legislators on the impact of isolation in long-term care during the pandemic, Caregivers for Compromise joined forced with others in the Essential Caregiver Coalition to publish a book of personal stories from all 50 states. Protecting them to Death: The Impact of Isolation in Long-Term Care was published and mailed to every US Congressman and Senator so they could see with their own eyes that isolation kills too!
The book can be purchased here
I began speaking to Florida Legislators about the introduction of a Florida Essential Caregiver law including a meeting with my local state Representative Clay Yarborough and decided to create a Florida companion book to share with all of Florida’s State Representatives and Senators.
I made the trip to Tallahassee and met with Rep. Jason Shoaf who has introduced H.B. 987, an Essential Caregiver bill in the current legislative session. Rep. Shoaf and I visited every legislator and personally delivered a copy of our state version of the personal stories book, Saving them to Death: The Impact of Isolation in Florida Long-Term Care.
I traveled to Tallahassee to testify in front of the House Health and Human Services Committee.
Our final bill, SB 988, the No Patient Left Behind bill, passed in the house by a 115-2 vote which allows visitation by essential caregivers in hospitals and long-term care facilities, following the same safety protocols as staff. Governor DeSantis signed the No Patient Left Alone Bill into law on April 6, 2022, our 26th wedding anniversary. The bill became law July 1, 2022.
Details of the bill can be found here
Our advocacy efforts continue. Caregivers for Compromise groups all over the United States are meeting with legislative aides every week to gain cosponsors for HR 3733, we are meeting with Senators to work on a Senate companion bill and we are continuing to speak to the media to tell our stories.
In Florida we will be introducing an Essential Caregiver constitutional amendment in the next session to be certain future administrations do not change the bill we worked so hard for. Our Texas group got an amendment passed last year and we will follow suit in Florida.
For more information on our ongoing advocacy go to www.facebook.com/groups/CaregiversForCompromise and www.caregivers4compromise.com
