Meet An Independent Health Advocate Who Used Her Skills to Advocate On the State and National Level

June 02, 2023 | by Anne Llewellyn

1. In Issue 4 we meet Mary Daniel, Independent Patient Advocate from Jacksonville Fl. Mary shares how she used her skills and creativity to advocate for her husband and others who were in nursing homes, during COVID and could not have visitors. Her work resulted in a new State Law in Florida, No Patient Left Alone Bill allowing caregivers to have visiting privileges to their loved ones during the COVID lockdown. The legislation is now moving forward as a Federal Bill known as the Essential Care Giver Act, allowing every resident to have two essential caregivers who can be with them following the same safety protocols as staff. Take a minute to read her story and join her efforts!
2. Here is Mary’s Story!
3. As a professional patient advocate, I spend my days helping clients of ClaimMedic, the medical billing advocacy firm I started in 2016. ClaimMedic was acquired by PinnacleCare, a private healthcare navigation and medical intelligence firm in March 2020 and is continuing to grow to support PinnacleCare members with their health insurance and medical billing needs.
4. As a private patient advocate my work is different every day. For almost ten years I cared for my husband Steve who was diagnosed with Alzheimer’s disease in 2013 at the age of 59. I placed Steve in a Memory Care Center in 2019 and boldly advocated for him during the pandemic when I was unable to see him for 114 days during the lockdown of long-term care facilities. You may remember the story; I worked desperately to get to Steve, eventually taking a job as a dishwasher at Rosecastle at Deerwood so I could be with him. That story went viral and I quickly realized that there were thousands of others just like me who needed to get to their loved ones too. The Facebook group Caregivers for Compromise was born and groups were started for every single state to offer support to those experiencing the devastation of isolation and to organize state advocacy efforts to get us back in. The viral story also got the attention of Gov. Ron DeSantis who appointed me to his Task Force to Reopen Long-Term Care facilities. Following the task force’s guidelines, Florida reopened their LTC facilities in September 2020, months before other states and we proved that we could safely be with our families again, paving the way for us to significantly contribute to the “No Patient Left Alone” bill that became law in Florida on July 1, 2022.
5. Caregivers for Compromise is now working diligently on the federal level to get the “Essential Caregiver Act” passed in this session of Congress which will allow every resident to have two essential caregivers who can be with them following the same safety protocols as staff. We are speaking to legislative aides and House Committee members weekly and are excited to have a Senate Companion bill in the works as well. Both bills will be introduced in the coming weeks with the House bill already having 82 cosponsors, split almost equally between both parties.
6. Steve passed away on December 21st. As his wife and #1 advocate I always knew how our story would end. Watching him slowly die from Alzheimer’s was truly the saddest thing I have ever witnessed, but the advocacy that resulted from Steve’s life has changed lives and there’s great comfort in that. As an advocate my goal has always been to empower others to boldly advocate for the ones they love so when all is said and done, they can look back with no regrets. I’m blessed to have that gift today.
7. References:
8. Facebook Group: Caregivers for Compromise: www.facebook.com/groups/CaregiversForCompromise
9. Husband of woman who took dishwasher job during pandemic to keep them together dies 'peacefully.' www.firstcoastnews.com/article/news/local/husband-of-woman-who-took-dishwasher-job-during-pandemic-dies-peacefully/77-bb7bd8fc-82ef-4f74-813c-fd83e9110dd0
10. Wife takes job as dishwasher to see husband in memory care center during COVID-19 pandemic. www.today.com/health/mary-daniel-works-dishwasher-see-husband-nursing-home-t186518
11. Essential Caregiver Act: www.congress.gov/bill/117th-congress/house-bill/3733?s=1&r=55
12. Bio: Mary Daniel is a Board-Certified Patient Advocate and the Founder of ClaimMedic, a medical billing advocacy practice and the Daniel Advocacy Group. Mary’s husband, Steve was diagnosed with Alzheimer’s disease in 2013 at the age of 59 and was a resident at Rosecastle at Deerwood Memory Care Center in Jacksonville from July 2019 until his recent passing on December 21, 2022. In July 2020, Mary gained national attention after taking a job as a dishwasher at Rosecastle so that she could spend time with Steve after being separated for 114 days during the lockdown due to COVID-19.
13. As a result, Mary founded the Facebook group Caregivers for Compromise – because isolation kills too! which has over 14,000 members and group pages in every state. Her grassroots effort got the attention of Florida Governor Ron DeSantis who appointed Mary to the Florida Task Force on the Safe and Limited Re-Opening of Long-Term Care Facilities. The recommendations of the Task Force were accepted by the Governor on September 1,2020 and Essential Caregivers were allowed back in facilities to see their loved ones.
14. She has continued advocating for long-term care residents by leading Caregivers for Compromise to promote H.R. 3733, the Essential Caregiver Act. Her Congressman, John Rutherford is an original co-sponsor of the bill. She has also worked extensively with Gov. DeSantis’s office to get SB 988, the No Patient Left Alone bill passed in the recent session of the Florida Legislature. Governor DeSantis signed the bill into law on April 6, 2022.
15. Mary is a lifetime member of the Georgia Bulldog Club of Jacksonville, a two-time past president and currently serves on its Board of Directors. She also is President of the group’s 501©(3), the Jacksonville Bulldog Alumni Scholarships, Inc. Mary also volunteers as a puppy raiser for K9s for Warriors. Her fifth service-dog-in-training Riggs, a Golden Doodle, was placed with a veteran in October 2022. To reach Mary, email her at mary@marysdaniel.com