On March 12 of 2020 I told my mother in the nursing home that I would see her tomorrow. Tomorrow did not come for 202 days. We Texas families came together as Texas Caregivers for Compromise and helped change this state forever. We fought to protect people like her from ever being isolated again. We were incredibly blessed with:
legislators that listened who took our calls and responded to our correspondence even though the legislature was not in session
a House and Senate that eventually voted unanimously to adopt our bill in one of the most contentious sessions we've ever seen
a state ombudsman who held weekly online Q&As to answer questions and reassure families
Texas Health and Human Services who worked week after week holding webinars, putting out provider letters, educating facilities and families, and then embracing our group as family stakeholders and soliciting our input during the process of putting guidelines in place.
Our group introduced the concept of Essential Caregivers to Texas and while the concept itself is not unique, Texas was the first to put comprehensive emergency guidelines in place that included Essential Caregivers and is still the ONLY state where long-term care residents have a CONSTITUTIONAL RIGHT to access an essential caregiver even in a health emergency. Sec. 35 Texas Bill of Rights
And, while many states have since followed suit with similar legislation, lesser legislation, combining their bills with hospitals, creating "no patient left alone" provisions that amount to little more than guaranteed end of life visits, most did nothing at all and trusted facilities to follow CMS guidelines which allowed long-term care residents to languish in isolation, semi-isolation, and exist under whatever policies facilities to chose to put in place until CMS finally lifted the visitation restrictions. March 13, 2020 to November 12, 2021. 610 days.
I know the exact day because it was the day of my mother's memorial service when CMS finally said "all visits must be allowed at all times". And it felt like a miracle.
In the 117th Congress (last session), Representative Claudia Tenney worked with us and our colleague groups from CA, NJ, FL, IL, KY, NY, CT, NC, and several other states to draft H.R.3733, the Essential Caregivers Act of 2021. We were able to recruit over 80 co-sponsors to the bill but it didn't move.
We have since gained the support of 150 legislators who said they would sign on a similar bill if it is filed during this congressional session. It is our sincere desire to see those states that do not have essential caregiver protections receive them.
What an Essential Caregiver bill does is protect residents from isolation while acknowledging safety and infection control protocols. We proved in Texas with our 1200 nursing homes, 2000 assisted living centers and 780 plus intermediate care facilities, that they would not be overrun with people OR disease. From September 2020 to June 2021, only one single family member ever brought COVID-19 into a facility while hundreds of staff members did. That is not a condemnation on staff members but rather proof that nobody has a greater vested interest in the health and safety of long-term care residents than their family members.
We are praying a bill is filed that provides the same protections in other states provided for residents in Texas. It is grossly unfair for long-term care residents to be forced to live and die in isolation simply because they were not fortunate enough to land in Texas.