Penny Shaw is a Dignity Alliance Massachusetts participant. She has lived in a nursing home in Massachusetts for about two decades and is a renowned advocate for residents in long-term care. Penny was a policy advisor to CMS and was part of the White House’s Coronavirus Commission for Safety and Quality in Nursing Homes.
What It Means to be the Chief Complainer
By Penelope Ann Shaw, PhD, February 2024
I am a resident of a nursing home. I also have had to take the responsibility of becoming the chief complainer on important issues for myself, other residents and staff. My facility has had several owners during the years I’ve been living there. The following are some examples of problems I’ve addressed.
One owner – the first day the company took over daily management – cut one CNA from each of our four units and all nurse overtime. Then, in their first annual cost report they made a profit of over $2,000,000 on our facility alone. This did not stop them – only a few months later – from giving our administrator one day’s notice to cut the budget 10%. The only way she could do this was through staff salaries.
She was told to implement this cut on a Thursday. Friday morning, she had no choice but to tell some staff – when they came to work – they had to go home. We were so short-staffed it was an emergency. So that Friday afternoon I filed a complaint with our state DPH. The lead surveyor was at the door of my room early Monday morning.
This surveyor – and a second surveyor – checked out what was happening on our units on the 7-3 and 3-11 shifts. And, at my request, they came back in the middle of the night – to check conditions on the 11-7 shift. The surveyors found – as is in the 2567 – the following. Some residents were in wheelchairs barricaded in corners of common-area rooms by tables. They also found two residents fighting each other with forks.
Three CNAs were seen wearing splints on their arms – as they had injured themselves working alone – instead of as 2-person assists they should have been doing. All three had been injured and required surgery. One was deemed too injured for surgery. Of the two who had surgery one was successful. But for the other CNA it was not successful. Now, after many years, 2 CNAs continue out on permanent disability.
In the Plan of Correction, the facility was required to hire back staff.
When the COVID virus became rampant there was a facility policy that staff were required to go to our admin’s office and sign for their PPE. At 11 pm our admin was never in her office. So, 11-7 staff were expected to work unprotected. My filing a complaint on their behalf resolved this!
We had an administrator who only wanted to pay for limited medical supplies. Two Central Supply staff resigned because they were in the middle – being criticized when they did not deliver all the needed supplies to the units. This administrator targeted me personally saying my supplies – for which I had a physician order – were too expensive. But our corporate office – to whom I made a complaint – disagreed, telling him I could have them. Our DON resigned sharing with me she was afraid she’d lose her license – given the conditions residents were living under because of him (in part the lack of essential supplies).
I had to file a complaint once with our state Elevator Board because one of our two elevators was not being repaired. My complaint was based on the regulation requiring two working elevators – given the number of beds in our facility. Had our second elevator not been working we would have had a serious safety problem. How would ambulance drivers get a gurney upstairs to take a resident out in an emergency? The cost for the repair was not high – but our owner still didn’t want to pay for the elevator did get repaired.
One year I filed a complaint with our state DPH because the A/C was still on in our facility – after the legally-required date for heat. It was in the 30’s outside and both staff and residents were saying they were cold. The heat got turned on but the A/C was still operational and sometimes turned on.
At one point the word came from our corporate office that residents should be getting their showers at 5 am or 6 am. No longer on regular shifts like 7-3 or 3-11. The intent of this policy appeared to be to keep 11-7 CNAs working the entire shift and decreasing the number of CNA care hours needed on day shifts. This policy I believe was a money-saving strategy. Residents were angry at being awakened so early like that and the policy failed. I documented the new policy with our state DPH as evidence of our owners’ attempt to put profit over appropriate care.
On the unit where I live residents have been put there with serious behaviors. We had a man assaulting both residents and staff. We had a very large woman who repeatedly threw herself on the floor. It took several staff to get her up – and they were being injured pulling muscles during the process. A resident – whose room was on the floor above mine – was flooding my room frequently.
I filed complaints with DPH and our corporate office. Two of these residents were put on our behavioral units where there are specially-trained Mental Health Counselors to work with residents with behaviors. The flooding was resolved by staff monitoring more closely the resident who did this.
I personally was assaulted by a resident in one of our elevators. She grabbed a cane I have and use as a reacher for elevator buttons. She bloodied me in several places. I called the police to come and write up an incident report – as this resident has brain injury and was not supposed to go about the facility unaccompanied.
I was repeatedly verbally abused by a CNA on the 11-7 shift. She complained if I turned my call light on for any assistance. She told me she had the right to sleep when she was actually being paid to work! I reported this CNA to our corporate office.
She was so angry at me the next time she saw me she tried to assault me. But she was stopped by another CNA and then was fired.
We had a cook in our kitchen who refused to send food to units when staff requested this for residents. He believed staff were lying and the food was for themselves. I contacted our corporate office at staff request – because staff in my facility are sometimes reluctant to complain. The issue got resolved.
I had to file complaints in November 2023 with our state Architectural Access Board to try to get problems in our parking lot repaired.
Dangerous potholes that need to be filled in. A very dangerous deep grate. Speed bumps that need to be repainted yellow so pedestrians can see them and won’t trip over them and be injured. An insufficient number of handicapped parking spaces of the right size. The need of a sidewalk so pedestrians don’t have to travel unsafely with vehicles in the vehicle path of travel.
Personally, one day in December 2023 I was driving my electric wheelchair in our parking lot. I was at the corner of our building about to make a sharp turn and leave the parking lot. But instead, I was terrified to be surprised by a semi-truck backing up toward me almost hitting me. I drove immediately out of the way but had narrowly escaped injury. This incident underscores the importance of having a sidewalk.
These deficiencies in our parking lot remain outstanding as I write.
The problems I have identified here are examples of events that have happened in my facility. I also have general concerns. Substandard care. Polypharmacy. Unhealthy food. Lost clothes. Violations of residents’ right to self-determination. Lack of privacy. A lack of person-centered care. We are thus not unexpectedly a 2-star facility under the CMS system.
What clearly needs addressing in my facility is the ongoing lack of both high standards and regulatory compliance affecting residents’ well-being. We need accountability.
It is very important that someone to develop infrastructure for individual advocacy in each facility by creating training programs for nursing home residents about their federal and state rights and resources. In this way residents can empower themselves.
CMS, state DPHs and public health officials should recognize that people are too often forced by policy to live in institutions where they are denied civil and human rights. They have the right to live in their own homes and communities as evidenced by the Olmstead Decision.
Public health officials should therefore work to fully implement Olmstead. This would assure there are sufficient long-term services and supports available – so people with disabilities can live in the community with independence, dignity, autonomy, empowerment, choice and control. This would avoid the trauma and lack of well-being associated with being forced to live in institutions.
Public health officials can in these ways be leaders in developing and implementing meaningful policy actions and interventions to protect people needing long-term care. Better policies will improve the physical and mental health and overall well-being of people with disabilities. Very importantly leaders should also connect individuals with disabilities living in institutions to the disability community. These individuals can then become part of our community, benefiting by belonging. By our philosophy of living. By our knowledge about entitlements. By receiving emotional and instrumental support and opportunities to familiarize themselves with resources including agencies such as independent living centers.