36: We already live in compassionate communities
Neither the government nor Saint Dymphna will save us
A lot of people have told me that they want the government to help them care for their family members. People with disabilities want the government to give them the support they need to live their lives independently. Unfortunately, when there are government programs providing this support, it often comes with so many restrictions and requirements as to range from unusable to undesirable. The amount of effort required to enroll and maintain enrollment is usually comically high for the ultimate “reward” of a few hours of minimum wage a month. People are understandably wary about inviting the government to scrutinize their financial decisions, inspect their homes, and oversee their family lives. Perhaps the elderly are so afraid of government intervention because they remember the era when government care meant forced institutionalization and isolation.
Many people today are in financially precarious situations, including people who are not yet responsible for care work. For many people, the added demands of care work – administrative, emotional, and hands-on – are simply one of several types of “burnout” and “crisis” they’re facing. People have debt burdens from housing, education, and medical care. People have insecure employment and onerous working conditions. Dramatically increasing housing costs lock people into inappropriate housing and push people out of their homes. These problems are so big that caregiver support programs are unable to address the greatest struggles their participants face.
Learning about Geel has demonstrated just how different programs considered “community care” can be. It can be a total institution offering residents a relative wealth of autonomy. It can be life within a second family – be that a foster family, a commune, or a club. Or, most commonly, it can be living in a motel room, being given some pocket money from your disability payments, and meeting with a social worker a few times a year. The same sets of laws can be interpreted so differently.
Participation in Geel’s foster care system parallels the era of institutionalization. There are plenty of other factors influencing community care that fall outside of medical and disability history. We make decisions not solely based on our personal ethics and the law, but also based on the general circumstances of our lives and what we view as our options. Whether or not adult foster care was commonplace seems to track the practice of placing teenagers in other people’s homes as part of an apprenticeship. Boarding-out in ways is simply an apprenticeship that can continue indefinitely. Boarders in Geel are encouraged to engage in training programs and paid employment. When it was still a colony, those who were able to maintain paid employment were granted permission to leave.
When apprenticeships and boarding homes were commonplace, all the ingredients for adult foster care programs were readily available when they were needed. Zooming in on the history of asylums, nursing homes, medical insurance companies, the two-earner household, and caregiver visa programs encourages us to forget the larger cultural shifts that change how care is provided.
People who have placed family and friends in residential care during any era have done so because of compulsion. We are pushed by the realities of our own financial and physical needs. We have, at times, been compelled by law. Today, laws and regulations shrink the possibilities we have to provide care. Our risk averse culture further limits what seems safe to do without potential legal and social repercussions. Our systems are designed to demand inhuman levels of perfection and then we blame individuals when things go wrong.
The rules and regulations we’ve put in place to prevent abuse don’t seem to be doing a very good job at preventing abuse. They do seem to be quite effective in making it difficult to provide care at all. They’re also good at making sure care feels bad to providers and recipients. The same goes for efficiency. Our attempts to make things efficient seem to be consistently making things less efficient and less pleasant. This is perhaps because top down policies are unlikely to work well when they collide with the complexity of real life situations. What does work is giving people the authority to make decisions about their lives and avoiding situations where people are so socially isolated that people fail to intervene when problems arise.
The government (and attorneys and well-intentioned crusaders) are not going to go away any time soon. Nor will bureaucrats figure out how we can easily manage all of our paperwork with an app (you have to believe me that they’re trying!). Luckily for us, there are plenty of people creating effective community care programs and fostering caring communities, despite these hurdles placed in their path. Designing with, not for, is generally a good guideline.
Informal foster care
Living with other families used to be incredibly common. The families celebrated as having founded the United States – the Puritans – did not allow people to live alone. People were legally required to live with a family. It didn’t have to be their biological or legal family and it often wasn’t. It was common for children to be “sent out” to be raised by another family. This was done so kids would learn skills, build social ties, and to manage discipline issues.
Until recently, a household in Europe and North America would include all sorts of people. It was exponentially more common for there to be household servants and for those people to live in the home of their employers. Even non-servant employees often lived with their employers. Unmarried women lived in boarding homes or with relatives. Even well-off families rented rooms. Families in less flexible financial circumstances shared homes, one family to a room. People didn’t necessarily enjoy living with a bunch of other people, often in cramped conditions. It was simply the way things were.
When we read a period novel where people are living in hotels or a weird mix of people share a home, we don’t think anything of it. These practices became far less common because government subsidies allowed many more people to afford to live alone (or at least with fewer people). Laws and regulations reduced opportunities for shared housing and created disincentives. These shifts made it much more difficult to arrange for adult foster care.
Did everyone else know that adult foster care is quietly happening in every community and, like in Geel, my obliviousness to it was so extreme no one quite knew what to say? Am I the unreliable narrator taken to the extreme? Did you realize how common adult foster care was?
My family lives in Ocean Grove, NJ, where boarding out the formerly institutionalized was a major controversy during my childhood and the reason I grew up a few minutes outside the town gates, rather than within them. In Brooklyn I rented a room in a building where the majority of tenants were in three-quarters housing programs.
Perhaps I didn’t view these programs as foster care because they’re so obviously inadequate. Placing dozens of people in apartments or hotels with some theoretical support from dozens of different agencies is not the same as providing someone with a family, even if both things happen through the same legal framework.
All the regulations put in place to protect the vulnerable, which make placing people with host families effectively impossible, fail to prevent abuse. A ProPublica investigation into guardianship abuse notes that “In New York City, there are just over a dozen judges who handle the 17,411 people in guardianships, data provided by the courts show.” Safety regulations prevent the placement of people with families and then the lack of enforcement of regulations after placement essentially abandons people.
As ProPublica notes, New York “state’s guardianship statute bars guardians from being the provider of health care, day care, educational or residential services to their wards “whether direct or indirect” unless the court finds that no one else is “available or willing to act” in either capacity.” This, of course, is not interpreted to mean a parent, spouse, or sibling named as guardian is freed from the assumption that they will personally provide whatever care is required. It does make it unclear whether taking the bulk of their pension, social security, or disability payment to cover the cost of their care while they live at home is legal in New York, although this is automatic when wards reside in group homes, nursing homes, or with foster families in Geel.
This is why foster care arrangements largely must be a DIY affair. Because it’s regulated at the local level, not the county or state, those interested in making private foster care arrangements with a neighbor are unlikely to face trouble so long as they’re not already entangled in the legal system. No one is actively going door to door, making sure your brother isn’t living with a neighbor who has agreed to provide support in exchange for payment. If the prospective boarder wants to live with an extended relative or friend, likely no permission needs to be sought nor registration made. I imagine we can all think of someone who has done this, with a relative moving between family members every few years. As long as there is only one boarder involved, it's unlikely anyone will take interest in whatever private arrangements you make.
You need to make sure your neighbors like you. If certain supervisory bodies got word of this informal arrangement, there could be issues, since there are regulations that could be applied to every circumstance if you want to make something impossible. Of course, it’s entirely acceptable for a paid caregiver to live in the home of a disabled person. The problem with these acrobatic work-arounds is that they don’t scale. Also, having to work around the rules and keep quiet about what you’re doing just to ensure someone’s basic needs are met makes it feel like you live in a very uncompassionate community.
This lack of a system actually works reasonably well for plenty of people. One big problem is that we need a match between boarder and host within our social circle. It needs to be a situation that’s financially viable, even if money remains tight. It helps if there’s someone in your inner circle who has a spare room and is short on cash for the bills. It doesn’t work when no one in our community is an appropriate host or if there’s no money to cover basic expenses. Everyone needs to agree, since if the family of someone who’s deemed to be legally incapacitated disagrees on their care, the court is likely to assign a professional guardian. Many professional guardians place their wards in institutional care by default.
This is the gap in our adult foster care system, the gap that leaves us fantasizing about some other place where everyone is accepted as they are and provided a safe and loving home. If you can’t quietly arrange care among your family and friends, with minimal support from government agencies and the legal system, the consequences are dire.
Geel is a city like any other, with people like people everywhere. They are neither uniquely good nor uniquely bad. The type of care provided in Geel has changed dramatically over the centuries as the trends for care have changed generally. Geel has never offered unusual or even “cutting edge” care, it’s always offered care that was available in any number of other places. The myths about Geel were created by a few men in power seeking to push their own agendas and were never taken seriously by people in Geel.
The myth of Geel feels right because it tells us there’s some other, better place with other, better people. We cannot go to this place, nor can we replicate it. It allows us to resign ourselves to fate and accept that nothing can be done. Luckily for us, this is a myth that falls apart under the slightest scrutiny.
When we think of every community as a supportive community, it’s easier to see what we already have and identify what we can build on. This is the beauty of asset based community development. Instead of focusing on weaknesses, we notice the strengths of our community and appreciate our potential. There is no one perfect solution. There are a great many imperfect ones, any of which might be perfect for you.
Even in today’s era where there’s an app to monetize and surveil every micro-interaction, our communities continue to be full of supportive exchanges without strict scorekeeping. I love David Graeber’s label of everyday communism to describe the ways we act outside of the exchange and monetary systems and simply support each other as neighbors. Regardless of the obstacles, we continue to come together and care for each other.
Love this. Thanks Cori!