Our Mission
Who We Fight For
Why We Fight
To fight for the immediate restoration of rights for residents in long term care facilities.
We demand the federal designation of an essential caregiver to be granted access no matter the public emergency. This Essential Caregiver would be tested as staff, trained as staff, PPE supplied as staff and therefore pose no more safety threat than staff.
Since federal and state policies dictate the wellbeing and rights of our loved ones in long term care, many of whom cannot speak for themselves, as well as our involvement with their care, we demand a process where we are allowed to comment before guidance is issued and/or amended, now or in the future.
“Nothing about us, without us.”
The doors of nursing homes weren’t the only ones locked.
Yes, we are fighting for our elderly parents and grandparents, but we are also fighting for…
Spouses and siblings living with disabilities in Skilled Nursing Facilities
Adult children living with disabilities in Independent Living Facilities and Specialized Mental Health Facilities
Parents and grandparents in Assisted Living Facilities
There is an ongoing massive violation of rights based on ageism and ableism that is keeping a population locked in their facilities under the pretenses of a continuing national health emergency. When will it end?
In March 2020, when the COVID-19 public health emergency was declared, the 1135 Waiver was issued by the Department of Health and Human Services granting state governors executive power to control various policies regulating residential healthcare facilities, including visitation. Despite the national emergency being canceled, the ability of the government to shut down visitation has not changed and the threat of nursing home residents being locked in without their essential caregivers is still a threat today.
In 1987, the Nursing Home Reform Act established a Nursing Home Bill of Rights into federal law which guarantees residents the right to receive visitors, use their own physician, be free of physical restraints (leave the facility when they choose), participate in resident and family groups, make their own care choices, use their own property, be free of abuse and neglect, and receive medical, physical, psychological, and social care. None of these rights are guaranteed without the outside visitors who advocate on behalf of the residents with dementia, Alzheimer’s, cognitive disorders, or cognitive injuries. The current restrictions on long term care visitation is a direct violation of these rights.
Beginning in March of 2020 and throughout the next few years, our loved ones were denied their visitation rights and lived in various states of social isolation, which led to an increase in death rates due to “failure to thrive”. In addition, families were locked out during the end-of-life stages and too many loved ones died alone.
A historically unprecedented national staffing shortage and lack of oversight are now the foot soldiers to an increase in resident neglect and abuse. While the world has returned to a version of pre-pandemic life, facilities still use tactics to keep families out, voices silenced and residents in jeopardy. Even without a declared state of emergency, a humanitarian crisis is growing.