33: Why it’s so difficult to provide community care
I spent a year researching this and know far less than when I began
This is part 33 of a series. To go back to the very beginning, start with part one.
I’m sorry that I made you read so many words just to be like, you know what, bureaucracy sucks and people are not so bad, actually. Perhaps it’s not the length that’s the issue, though, given that last week I not entirely jokingly suggested the secret to creating community care programs might be to set up some new penal colonies. If I wasn’t writing this in real time, I probably wouldn’t have written any of this at all. I set out to figure out how to get around the zoning laws giving us so much trouble, spent six months studying mythology and the reformation, and found myself wondering if it was time to reconsider total institutions. What a delightful journey life is.
It’s fitting that versions of the Dymphna story are narrated by the fool. I passed quizzes on European history, wrote essays on mythology for art classes, and then promptly forgot it all. Researching adult foster care for such a long time only to realize I was surrounded by it all along is a bit much, even for me.
I’m going to point a finger and say that the myth of Geel encourages us to overlook what we already have and ignore our own potential. I don’t think I’m the only person who thinks of the US and Canada as being places where adult foster care is vanishingly uncommon. It turns out it’s incredibly common, we just don’t have statistics on it because it’s managed at a municipal level when there’s any paperwork involved.
I got on a flight to Belgium thinking I had already learned that the secret to resilience in care work was being part of a community. I had already noticed that the people I met because they invited me, a complete stranger, home for dinner were no less likely to have care responsibilities yet far more likely to have integrated those responsibilities into their life. People who were private and aimed for self sufficiency were more likely to have care responsibilities take over their lives, leading to burnout.
That’s not to say extroverts and active community members didn’t also burn out, just that they tended to have access to (and an openness to accept) support that allowed them to make it through. I’d seen how those who were really involved in any community – be it a bird watching group or something that might be a cult – fared better when life happened. Having meaningful social connections with a diverse group was far more protective of burnout than any program I saw that was designed specifically to prevent caregiver burnout. Being part of a tight-knit family or group of friends wasn’t enough, since small, insular communities had access to fewer resources, fewer types of experiences, and were more likely to all be in crisis at the same time. In order for people to show up when we need them, they need to be both willing and able to be there consistently.
I knew this in my heart from personal experience, without a shred of quantifiable evidence. Yet I still went to Geel thinking I was looking for verifiable facts. I thought the lessons to take from Geel were about zoning laws, funding policies, and community buy-in. I was still looking at things from the perspective of someone who wanted to identify best practices, like I was a consultant for a health insurance company looking to reduce expenses.
I went to Geel looking for facts and wow did I find some…facts. There are some identifiable things for why it’s such a struggle to provide community care and adult foster care.
Risk aversion and lack of authority
If we’re all born caring about other people, why do we believe the accusations that our own communities don’t care and cling to fantasies about somewhere else? We know all the dirty details and personal failings of our own communities, while we have only the barest outlines of life in other times and places. The grass is always greener on the other side is not enough of an answer, though. To give a legal answer for what’s ultimately a legal problem, we’re suffering from misaligned incentives.
We demand our government be efficient. Efficient care requires institutionalization or the sort of “boarding out” that happened in Ocean Grove.
Our culture full of attorneys leads organizations to interpret the rules in the most punitive and draconian way possible in order to minimize potential liability. Following legislation and tradition to the point of absurdity doesn’t get you in trouble, even if what you’re actually accomplishing is in opposition to your goals.
Because the problem of caring for adults cuts across multiple domains, there are a lot of people who feel required to make decisions that reduce risk. The most motivated change maker has to face numerous authority figures from the government, religious groups, nonprofit sector, and the private sector, none of whom have any incentive to do change things, since change puts their career and their organization at risk. These layers of bureaucracy aren’t new. There’s a reason Geel’s foster care program sprang up during the chaos of war, when Catholic authorities had been outlawed and civil leadership was in dispute. Any of us who has dealt with bureaucracy, from co-op boards to government agencies, understands that sometimes you need to break the rules to get basic necessities done.
This is how we can all want something and yet it can be effectively impossible to have it. This is why no matter how hard we work to create programs that provide care with dignity, the default is for things to morph into something awful. You cannot create something beautiful when risk aversion is the ultimate goal of the entities providing funding and approvals.
Why do we believe our neighbors are not nice people and dream of another place where the neighbors are nice? The same reason we need to remind ourselves of Hanlon’s razor.
Funding
Geel demonstrates that funding is not necessarily the hurdle to foster care that it seems to be. Host families in Geel aren’t paid to care, they are simply given a set amount of the boarders income. This is essentially the same system as is used for adult foster care programs in the US. It’s the arrangement many family caregivers have with their care recipient, since caregivers who feel forced to give up paid employment often have no choice but to live off of whatever disability income their care recipient receives.
That’s not to say an increase in funding wouldn’t result in an increase of boarders moving from boarding homes and sheltered care to the homes of family and friends. As pensions and state support for the elderly and disabled became more common in the US, caring for the disabled at home became more common.
“Only when the pension system was introduced...did some families make a stronger attempt to take in their parents when they needed care, despite a lack of living space, since the caregivers would then be able to get a share of their parents pension.”
The way they phrase it makes it sound greedy. Really, though, many people feel compelled to place someone in residential care because they cannot afford to reduce their working hours, stop working to provide care, or make home modifications. I encounter people who persist in providing care to family members at home, despite unsafe living conditions, extreme poverty, a lack of training, and a lack of respite (even breaks to sleep, bathe, and run errands). While I admire their dedication, it’s not behavior I would like to see become more widespread.
Unfortunately, disability payments are insufficient to meet the actual expenses of the recipient, nevermind to also provide for their caregivers. Disability payments are often decreased or eliminated if the recipient has a working spouse or is part of a household with other income sources. It denies people with disabilities the right to marry or cohabitate with a romantic partner. Reducing disability payments based on household income creates unhealthy household dynamics. It forces people to provide care, regardless of their capacities. It leaves disabled people beholden to their relatives. It creates desperation and suffering. These are all ingredients in the recipe for abusive situations. If governments want to encourage family and friends to care for people at home, disability payments should be sufficient to meet the full financial needs of recipients.
Paid employment and volunteering
During the heyday of Geel’s foster care program, in the 1930s, boarders were encouraged to engage in paid employment whenever they were capable. Government support for boarders was not means tested.
Today, the types of government support provided to boarders (and non-boarders with similar diagnoses) is means-tested in the US, Canada, and Belgium. This means that there is a financial penalty for working. Volunteering can also put one at risk of losing benefits, as this demonstrates the capability to work. Penalizing people for working and volunteering denies them the ability to contribute to their communities.
Income taxes already serve to redistribute wealth. There is no need to have these draconian regulations preventing people from accessing necessary medical care and financial support.
A navigable program
Ultimately, the thing that makes Geel’s adult foster care system so successful is that it remains a total institution. In Geel, adult foster care is run by a single organization, the OPZ. Boarders and host families deal with a single organization, with one set of procedures and staff. The OPZ places boarders with families, manages transportation, runs support and social programs, and manages issues that come up.
We are reasonably wary of total institutions. This is why people assume the worst of JPUSA and view Camphill projects as nice but weird. This wariness led to responsibility for community care to be broken up and distributed across hundreds of organizations in the same district. While this prevents the potential evils of total institutions, it creates evils of its own. Namely, when one must sift through hundreds of organizations in order to determine which programs they qualify for and then navigate the process of enrolling in a dozen different programs run by different organizations, it becomes effectively impossible to access support.
Programs like Fountain House style clubhouses and less formal organizations like community cafes and time banks step in to provide the missing middle. These organizations help people navigate these incredibly disorganized systems.
There is not one right answer. Or, rather, the right answer is to have both total institutions and support hubs. It’s like students being allowed to live on campus – living in a dorm, using the campus gym, eating in the cafeteria, seeing the campus doctor – or live off-campus and arranging whatever services they need. In places where people have the choice, they sort themselves according to their needs and preferences. The problem is not the existence of total institutions, the problem is that people have too often been stripped of their autonomy before being placed in them. Institutions of any size can support and empower.
There is no need to raise awareness of the caregiving crisis. Everyone knows disabled people exist. People who theoretically want to support people who need care may not prioritize that support because of needs they view as more urgent. Decades of increasing costs in housing, education, and medical care has expanded the percentage of people who are struggling to provide for themselves and their families.
You do not need pagan murderers fueled by incest fantasies in order to establish an adult foster care system. People are providing care around us. My quest to uncover the origins of Geel’s foster care system was preposterous from the outset. No one invented giving a shit about other people. No wonder the experts responded with “Once upon a time, there was a beautiful Irish princess…”
The myth of another place with greener grass is so popular because it’s oddly satisfying to avoid reality. Bemoaning how unjust our world is feels like we’re doing something. Fantasizing about another place, an alternate reality, allows us respite from the present. Spending the afternoon reading about the denticles of snails or watching trashy reality TV feels like an escape, while identifying all the ways our world fails to live up to a utopia feels like a productive use of time. Reading the news seems so productive, doesn’t it? Even when we aren’t actually doing anything.
I thought I could step off the train in Geel, chat with whoever happened to be there, wander around a bit, and learn something important to share with people back home. Instead, I learned a far more useful lesson: that I was misunderstanding so many things I thought I knew. Also, experiencing a moment of delight while reading about snails is a better use of my time than treating a myth like a mystery to solve.