After an acute non-resolving episode of Guillain-Barre syndrome in 2001, being in an ICU not expected to live, and a year in a respiratory rehabilitation hospital, I was transferred to a nursing facility where I where I have been living for 16 years. Due to the residual effects of my illness I have quadraparesis —muscle weakness in all four limbs. For five years I had a tracheostomy and a feeding tube, both of which were successfully removed in 2006. I am today “total care.”* I would like to live in the community, but am unable to do so, because of my need for access to 24-hour care, which MassHealth [Massachusetts Medicaid] does not provide.
I would spend nine-and-a-half years inside medical facilities, before regaining my independence and reintegration into the real world in 2011.
Mine is a story of good staff and good care, but also of barriers to escaping institutionalization, and being able to freely be my own person — low expectations, unnecessary drugs, paternalism, policies with no basis in law, and even design problems.
Unlike in the rehabilitation hospital where I got up, participated in activities, did watercolors, went outside in nice weather and had a friendly visitor to talk to, I was mostly bed-bound in my facility for several years. I read non-fiction and scholarly books. A CNA assumed I was only turning the pages, and offered me a picture book instead. Once, when I tried to talk about a book I was reading to a staff person, she asked if the words I was saying were words. Intellectually, I was isolated among the direct care workers.
I knew a woman in 1990 who used a wheelchair, while simultaneously being on breathing support. Nothing like that was suggested to me by the rehab staff in my building. It was not until 2010 at age 67, when I was outside at a medical appointment, that a clinician asked why I didn’t have a power chair. So, I got one, which transformed my life by providing me with mobility and freedom. The failure to understand the importance of assistive technology denied me many years of enjoying life in the community.
I was amused as my advocacy became well-known, that I was told, “We just thought you were a nice person,” confirming my belief that little had been expected of me.
Institutions can be paternalistic and disempowering, but I fought back against this. I suffered from infantilization, staff patting me and calling me “boo-boo” and “baby.” I had to ask for my name back. A phlebotomist, obsessed with the fact that my neck weak on the right caused my head to tilt, wouldn’t stop trying to fix the problem. So, I went outpatient for bloodwork to get away from her. I encountered paternalism when a staff person was obsessed in summer, that I neither used sunblock nor a sun hat, and when a physician who had forgotten the federal Patient Self-Determination Act, repeatedly pressured me to change the insulin I’d been using for years without incident. Both thought they were acting in my best interest. I ignored the woman, and chose my own physician, now going outpatient for primary care to avoid boundary violations.
The paternalism I continue to deal with is resistance to resident-direction, the belief of some CNAs that they, not me, are the experts in my care routine. Offended when I direct them, they tell me how many years they’ve been a CNA, unaware of the importance of lived experience. I respond that each resident is unique, that I know the most efficient and correct way. Alas, CNAs have been trained to do tasks — wash, dress, transfer, but not to be curious and ask questions. One of my favorite CNAs and I banter back and forth about this. She says, “You can’t do anything for yourself,” implying therefore she has the right to decide what care I need. I just insist on the routine I want, my right to do so supported by federal regulation as person-centered care.
In 2010, I went to a resident council meeting where an ombudsman gave me a booklet listing some of the nursing home residents’ rights. I learned I could read my medical record, which I thought would be interesting. I discovered that I had many wrong diagnoses, and was being given inappropriate drugs crushed in applesauce — psychosis “Not Otherwise Specified” [Geodone], depression [Prozac], pain [Oxycodone], GERD [Prilosec], edema [Lasix]. insomnia [Ambien and Trazadone]. Knowing these were all incorrect, I discontinued them that day. No apology was ever forthcoming. This was the beginning of my real recovery — thinking and questioning seriously about where I lived, what was going on, challenging the system by speaking up and managing my own care.
As a survivor of psychoactive drug misuse, I was pleased to have the opportunity to consult on, and to be named in the acknowledgments of, the Human Rights Watch 2018 study on the misuse of antipsychotic drugs in nursing homes, They Want Docile: How Nursing Homes in the United States Overmedicate People with Dementia
Policies Without Basis in Law
I had to challenge a couple policies to promote my independence. When my power chair was being charged in a room down the hall away from the room where I sleep, numerous times I had insufficient power to go out, as the batteries had not been charged. I researched the laws regarding having my chair charged in my room, and discovered this didn’t violate fire or building codes, and was already happening in other facilities. I now have my chair charged where I can see if it’s actually being done properly. I also had to use my rights to insist CNAs safely move my chair manually, as the controller is not designed to be used from a standing position.
A rehab person informed me of a new corporate policy, that I would no longer be allowed to keep the Roho cushion [state-of-the-art] on my power chair, but would be provided another cushion instead. Rohos are most protective of pain and pressure ulcers, which are common in users of wheelchairs. I questioned, and found that there was no recall of the cushions, and learned as I’d suspected, that there’d been an incident in a facility where staff had not kept the Roho properly inflated, causing a wound. I let my administrator know the chair and cushion are my personal property, not of either our facility, nor of our corporate owner, and that I was keeping it to be comfortable, especially in long van rides in the community.
I was told after years of doing so, that I could not have anyone but a nurse or CNA put a sweater or jacket on me. This meant I might waste as much as a half hour before going out, navigating busy elevators up to my unit and back, and to find an available staff person. I checked and was told that anyone can dress me, because all staff in my building have liability insurance and also, that the licenses permitting nurses and CNAs to dress me are not restrictive.
Solving problems with designs that don’t work as they should has been essential to my independence. An unpadded reclining shower chair made of hard PVC was extremely painful to lean on, and would have discouraged me from having showers to be clean enough to go into the community. I had CNAs put heavy blankets on the chair to make it comfortable. As is common for those of us who are not weight-bearing, we often develop kidney stones due to poor circulation. Drinking six 16-oz cups of water daily is preventative. But when the lids of the cups our central supply was getting us had only side-of-lid openings for straws, this would have allowed water to pour all over me. I went to the hardware store and bought a small $2 breakaway knife, with which I create holes in the tops of the lids. This helps keep me out of the hospital and able to go into the community.
The most serious design problem I encountered was when the loops of the lift sling I used were starting to fray, making the sling soon unusable. I had my facility buy a new sling — same company, same design, same size, only to find a disastrous design change. The “hand holds” in the back of the sling to pull me back, and position me properly in my chair for comfort, were 6” lower than on my current sling, causing staff to have to let go before completion of a proper transfer. I could not go out positioned like that. I contacted our supplier and the manufacturer, both unsuccessfully, and found that a colleague who knows the “textile people” in the disability community was out of the country. Thinking I might have to have a requiem for a sling, as I might have no more independence, it finally occurred to me to take two of the same slings to an upholsterer. I had him remove the band with the holds from one sling, and attached it at the right height on the other sling, without affecting in any way the integrity or safety of the sling.
An unresolved barrier to full participation in society for nursing home residents on MassHealth, is the low personal needs allowance of only $72.80 monthly, which has not been increased in 10 years. There is an assumption that nursing home residents don’t need much — not transportation to get to places they want to go, nor decent clothes to be presentable in public, nor a working cellphone for safety — all of which residents are responsible for paying for themselves. So, it is often state governments which block the doors to the outside.
After years of being inside walls, I reintegrated myself into the community incrementally. I now have an ordinary life. I manage my care and personal life — making appointments and transportation for medical, dental, advocacy and leisure activities. I have a cellphone, use the internet, have an account with a debit card at a bank in my neighborhood, go shopping, go to the farmers’ market, eat out with friends, take classes, go to the beach and conservation areas. I belong to a writers’ group, vote at my polling place, visit museums, march in my town’s Fourth of July parade and go to the library to attend special events.
I also became an advocate, first a nursing home one, then a disability one. I became increasingly asked to participate in many advisory ways.
I testify at committees at our state legislature. I speak at government offices, my town council, and at professional meetings of academics and aging service providers. I consult, am in the news and publish in scholarly journals. I do access tours, and have worked as a user/expert with design students at several Boston-area colleges and universities, on development of adaptive devices for individuals with physical disabilities.
I do not consider myself institutionalized, but community-dwelling, actively engaged socially, intellectually and civically. I am continuing the meaningful roles, social relations and lifestyle I had before paralysis. Being outside my facility, I am not isolated from my community. I have normalcy, critical to my self-worth and personhood.
Personal Strategies and Solutions
The strategies I use to empower myself, and to successfully navigate the nursing home system and be independent include research, legal awareness of both nursing home residents’ and disability rights, and articulating them in my day-to-day life. This has not been without backlash, as one nurse told me I’m spoiled and not following the rules. I also use disability community thinking — that it’s not an individual deficit, but the environment that disables, the importance of taking control, self-determination and self-advocacy. I reach out to, and learn from, individuals in my social network — friends and colleagues, lawyers, government officials, providers and advocates — who provide support and resources essential to my survival as an independent person. Without them I would feel intimidated. Patience and persistence are essential too.
There are a thousand reasons not to live in a nursing facility. Facilities can inhibit independence and community integration, as they are complex organizations of people of varying skills, personalities and experiences. I do not think it is possible for staff to predict what each resident is maximally capable of. So residents and their representatives need to make requests, advocate, and fight relentlessly against obstacles, sometimes just saying “No!” Although no one intentionally kept me inside and made me a prisoner, that would have happened had I not been empowered and solved problems each step along the way.
In my particular case, the management of my facility is supportive of my life in the community by partnering with me. They do this with a schedule that makes my life predictable, by having working lifts and internet access, and by paying for private transportation to speak at a conference. They also support me by valuing my work, with a framed picture in our reception area of me as an advocate, on the front page of the Boston Globe.
* “Total care” is a billing term under skilled nursing care meaning my functional needs approach total. I need to be washed, showered, dressed, positioned, transferred.
About the Author
Penelope Shaw is an older adult —75 — with a disability who lives in a nursing home. Despite her disability, she has pursued a career as an educator, writer, disability advocate and advisor. She has become a respected voice for people with disabilities in the Boston, MA area and beyond. She testifies at committees of the Massachusetts Legislature, appears in local TV and radio news broadcasts, and interviews by The Boston Globe, the Braintree Forum, and the Associated Press. She is a professional writer, having published in peer-reviewed scholarly journals, newsletters and blogs. Her writing appears in an advocacy book, and on advocacy websites. The Administration for Community Living recognized her advocacy efforts by designating her an elder trailblazer for Older Americans Month 2016. She is affiliated with a wide range of policy-making bodies including the Disability Policy Consortium, the Massachusetts Executive Office of Elder Affairs, the Massachusetts Advocates for Nursing Home Reform, the Museum of Fine Arts, the Massachusetts General Hospital and the Institute for Human-Centered Design.
Ms. Shaw has a PhD in French Language and Literature with a specialization in psychology and literature. She taught French for several years, but most of her career she was an English Language Learning faculty member and administrator. She worked at the University of Michigan Ann Arbor, the College of the Virgin Islands/Peace Corps Training Camp, the Instituto de Estudios Superiores in Santo Domingo, Dominican Republic and in the Boston area — Boston University, UMass Boston and the Kennedy School of Government, Harvard University.