In order to ensure that no one is isolated and truly alone in a declared emergency (such a a pandemic) no one ever again should be denied access to family/friend caregivers who provide not only assistance with daily needs, but true love, caring and support. Out of the ravages and losses of life from COVID 19, the creation of a Federal ‘Essential Caregiver Bill’ was born -H.R. 3733 in January 2021.

The brainchild of this bill was due to the initial tireless efforts of Mary Daniel, wife of Steve Daniel. from Jacksonville Florida. Steve was diagnosed with Alzhiemer’s disease in 2013 at age 59. During the lockdown, Mary knew that her time with Steve was precious and slipping away. She was denied access, as were other families. However, desperation is sometimes the ‘mother of invention.’ She inquired about a job in the building, left her professional job and learned that she would be a dishwasher. Tht didn’t matter a bit, as long as she had access to steve! After 114 days, she was able to touch her husband and try to re-establish with Steve. Her joy was immense! Local media, then national media picked up her story. Governor DeSantis initiated an Essential Caregiver designation in Sept 2020 under safe conditions, allowing family caregivers inside.

Sadly, Steve passed away at his memory care facility on December 21, 2022.

Definition-

Now HR 8331 (House of Representatives, Senate bill 4280), a bipartisian bill amend titles XVIII and XIX of the Social Security Act to require skilled nursing facilities, nursing facilities, intermediate care facilities for the intellectually disabled, and inpatient rehabilitation facilities to permit essential caregivers access during any period in which regular visitation is restricted. It also requires CMS to set clear and fair guidelines for essential caregivers to protect the safety of facility staff and residents. 

It grew from Mary Daniels initial heroic ‘be the voice’ grass roots efforts.. Despite so much effort, the 2024 updated version has yet to be passed. As of the end of October, there currently are 95 House Sponsors- Co-sponsors (47 Republicans and 48 Democrats). Sponsorship in the Senate is 16, with 8 Republicans, 7 Democrats and 1 Independent.

I am very proud to say that Senator Richard Blumental, Congressman John Larson fron Connecticut, as well as Congresswoman Claudia Tenney (New York), have led the charge from the beginning.

When I think back to my many, many childhood surgeries as a child, I knew immediately, that my Mom was truly the original ‘Essential Caregiver.’

What can the documented, designated EC’s do, you ask, particularly under short staffing circumstances? Provide companionship, love ansd support, but also advocate for them with nursing staff, assist with personal care, eating, feeding, bed comfort, read to them, assist with connecting them to other family members, kiss and hug them, do their nails, brush their hair, laugh and cry with them etc, etc.

To Truly Understand…PLEASE LISTEN AND SHARE THIS PODCAST….

Mairead Painter, CT Long Term Care Ombudsman and Lori Smetanka, Executive Director of the National CONSUMER VOICE (for Quality Long Term Care) the nation’s leading non-profit, completed this timeless podcast on January 12, 2022, on Mairead’s podcat series-

“Your Care-Your Rights-Your Voice” (on Apple, Spodify and Google) I listened more than once.

It is EXCELLENT!

LINK- Apple- https://podcasts.apple.com/.../your-care.../id1590905890

***Scroll down the podcast list to January 12, 2022 - entitled, “Consumer Voice for Quaity Long Term Care’

(26 min)

I encourage you to listen to any in the entire series…Thank you for caring!