They cross my feed every now and then, and every time, I feel a sharp twinge. The stories all read more or less the same; a young person, someone sometimes very close to my age, died in a nursing home far from home. Often the person’s parents weren’t even there, sometimes the person died alone and in silence, other times over the protests of parents screaming, protesting a transfer they didn’t want or a treatment they opposed. NPR probably offers the best reporting on such cases; the media rarely pay them much attention and even more rarely consider what’s going on here, the depths involved in these stories and the facts that they betray.
Why would a young person die in a nursing home, people ask. Nursing homes are for old people.
The fact is that many young people require skilled nursing care to survive. Their impairments are such that they may need assistance with tasks of daily living, physical therapy, operating a ventilator, shifting in bed to prevent sores, and other needs. In some cases they need full-time aides, and those aides may need to be able to provide some medical services to their clients, not just company and basic care needs like bathing and feeding.
In an ideal world, people who need these kinds of services would have a range of options to choose from when it came to receiving them. Some might prefer to get them at home, in accessible housing with assistants provided through a mixture of sources; notably, not family members pressured to provide care full-time and for free, but hired professionals who work with their clients to help them retain as much independence and freedom as possible, with the training to make sure their clients are healthy and happy. Others might prefer a community-based living facility, which could vary in size from a handful of residents to an apartment complex, where people have their needs met by care teams that still work with them as individuals in a community-based setting.
A community-based setting is one where people actually live in their community. They have opportunities to interact with the people around them, and not just the people who live in the same structure, but the community. They can go out onto the streets and socialise, attend community events, take college classes, do whatever else it is that they want to do. The community setting offers the opportunity to get needed care from trained professionals without sacrificing freedom.
Others may prefer institutional settings, which can also be highly variable in terms of what they offer. Some institutions specialise in serving people with disabilities (as separate from older adults, who can also have their own disability-related or skilled nursing needs) and may offer some community-based socialisation as well as ward-based community living. Other institutions are more like dank dark docks where people are thrown away and left to rot, and that includes some skilled nursing facilities.
Particularly skilled nursing facilities that are targeted at older adults and their needs. These facilities don’t know what to do with young disabled people because no one there has the training, which means that people may not get the basic treatment they need. They may struggle to communicate, regress in physical or emotional therapy, and have trouble settling in the nursing home environment. Personnel not equipped to handle specific disability issues might want to help their patients, but they lack the tools to do so, which is when patients end up choking on their own saliva without suction, lying in pools of their excrement, developing massive bed sores because no one thought to turn them, and moldering away in their beds.
This is not a good quality of life; it’s the kind of life that might understandably lead someone to consider suicide, because ‘life’ consists of lying propped up in a bed all day, staring at a television. There is no social or emotional enrichment in an environment where the patient feels utterly isolated from people like her, and unable to make contact with other patients. Imagine having cerebral palsy and being stuck on an Alzheimer’s ward because sometimes you flail and people think you’re violent, and the only place they have for violent patients is that ward. What would you do with your days?
And yet, people are often forced into institutions because they are the only viable option provided, something which seems to genuinely shock those outside the disability rights movement. Insurance companies and government agencies may refuse to pay for community-based care, there may be no support for such services in some communities, or people may be obliged to travel extensive distances to find care for their children. For those who actively choose institutional living, that is a right that should be protected, but the right to community-based living also needs to be protected.
The thing is that a world without forced institutionalisation isn’t ‘ideal.’ It’s actually the law, as interpreted by the Supreme Court in its famous Olmstead decision. Under the Americans with Disabilities act, long-term care must be provided in a ‘least restrictive’ setting, i.e., the community, rather than an institution, at the choice of the patient. Yet, people have to sue, often repeatedly, to defend their right to community-based care, and the DoJ has been heavily involved in a number of such civil rights cases to force individual states to comply with the law and honour the dignity of disabled residents.
Children and young adults don’t belong in nursing homes. They belong in their communities, unless they feel they would be better served in an institutional setting, in which case they belong in facilities tailored to their needs and prepared to handle them as individuals. Until the disability community gets support on this issue, though, young adults are still going to be dying in nursing homes, and it’s still going to be tragic and infuriating.