In the US and Canada it’s assumed that if someone needs ADL support they will live with their parents. If that’s not possible for some very compelling reason, such as their parents having died, they are sent to live in a nursing home. With enough work they may be able to find a spot in a group home instead.
There’s little support for other options. The needs and desires of everyone involved, beyond the most basic care in order to keep someone alive, aren’t a consideration. That’s just not how it works.
The government effectively forces families to care for any disabled family members on their own, without pay. The government provides the bare minimum of support to get them to continue providing this care for as long as possible, with the threat of subpar institutional care as the only alternative.
Broadview recently shared a story on the way people with disabilities are forced into institutional care, demonstrating the ways this limits the lives of people with disabilities.
One thing I found off-putting about an otherwise excellent article was the assumption that the issue with nursing homes is that young people are being put in them.
Sure, a 24 year old doesn’t want to live in a nursing home. Neither does a 94 year old.
No one wants to live in a nursing home.
It can be a burden on families to require them to provide and coordinate care for a disabled child for as long as that child lives.
It’s also cruel to deprive these adults with disabilities the right to choose where and how they live. They are beholden to their parents, on whom they rely for essential care.
I don’t relish the idea of having either of my parents assist me in the shower, but it’d be fine if it was something we had to do. It’s a lot harder to imagine dating if I needed their assistance with any aspect of it. Relying on a single person for care limits who we are able to be, the aspects of ourselves that are allowed to flourish, regardless of how accepting that care provider aspires to be.
Programs that allow the person requiring care to select, train, and pay their own caregivers are a lot of work to participate in. They also give the care recipient — and their families — the ability to choose who does what and access outside help. When done well, they restore dignity and autonomy to everyone involved.
We stopped putting children into orphanages. Why is it still okay to put people over the age of 18 into institutional care?
It’s very hard to remain a person living in an institution. To maintain your identity, your interests, your relationships. People living in institutions are cut off from being part of the larger community. It doesn’t have to be this way. Colleges are institutions that enable people to discover and create their identities as they nagivate the shift of one phase of life to another.
Some institutional care facilities are designed to mitigate this. My maternal grandmother’s facility was like a college campus. There was always some activity to join. There were garden plots, gym facilities, and enticing food. There were shuttle buses to local attractions. Different levels of care were provided, making it easy to maintain friendships developed with your neighbors. It was conveniently located and my grandma wasn’t much for long visits, so I had no excuse not to stop in for coffee whenever I was passing by.
My grandmother briefly lived with her son. She’d stayed with us for a while, then moved into a house in our neighborhood. She lasted only a few days sharing a house with her twin brother. She decided where she wanted to live and how she wanted care to be provided. She had the money to allow her to make those decisions.
We seem to forget that home care doesn’t have to happen in someone’s own home. When someone can no longer live alone, we calculate how much it would cost for them to have a live-in aide. We debate whether they will move in with us or if we will move in with them. We’re too overwhelmed by caregiving responsibilities and the health crisis to consider other options.
It’s entirely legal for someone with disabilities to live with another family or a group of roommates who provide them with the support they need. Why is this option so incredibly rare?
I’m not suggesting anyone be removed from their childhood home once they age out of children’s services. I’m not advocating for a ban on institutional care, either.
I’m saying that the provision of housing and care should be a decision made by the person most affected by it — the person who needs care.
All too often its the primary caregiver and the family deciding where someone who needs care should live. This process involves a lot of soul searching about what’s best for everyone. Then there’s careful planning for how to let the care recipient know what’s going to be happening.
Perhaps when the Broadview article assumes it’s okay for the elderly to be placed in institutional care, it’s on the assumption that elderly people in nursing homes are all so affected by dementia that they aren’t cognizant of what’s going on or capable of being involved with decisions about their life. If only that were the case.
Lucy Series explores what it means for a place to be a home. How in institutions like hospitals people are stripped of their ability to make many choices based on policies, regardless of their individual circumstances. She references how a home is a place that provides us with autonomy, privacy, and security.
I’ve joked that, for me, home is anywhere where the wifi credentials are saved in my laptop, I can find the lightswitch in the dark, and I can make breakfast without having to search through cabinets. The explanation Series brings us, inspired by the writings of Lorna Fox O’Mahoney, are more universal. I had assumed that I’d be allowed to make myself breakfast. I’d assumed that I’d feel safe.
If you’re interested in what home means, you’ll probably enjoy Avery Trufelman’s podcast Nice Try! The first season shared the rise (and fall) of several utopian communities. The second season shows how our utopian vision has been channeled into household objects we now take for granted.
Given how I’d been hopping around intentional communities before the pandemic and have spent the pandemic falling into research rabbit holes (on why and how labor became divided as it is into ‘care’ and ‘work’) and the way she interviews so many of the researchers and activists I admire, listening to this podcast makes me feel like we’re on the same wavelength.
If you want more podcasts, Radiolab had a beautiful episode on dying, grief, and Elisabeth Kübler-Ross.