Pay for family caregivers is a cruel joke

Carer payments make sure you become and stay poor

Many people join our Facebook groups because they’ve heard rumors that you can get paid to take care of a family member. These people are usually from the US or Canada, since those are two English speaking countries where there is no way to find a clear information on financial support for informal care work.

When many people are quitting their jobs, taking time off, and reducing their hours to provide unpaid care, it seems only reasonable for the state to provide them with replacement income. This seems especially reasonable in places where laws require this care be provided to children, spouses, and parents. You can’t work if you’re legally required to provide 24/7 care.

Programs that pay caregivers in the US are real and they really suck. The programs available depend on where you live, so the rules and potential income vary significantly. If you were earning more than part-time minimum wage, you’ll almost certainly see your income drop.

If you click on that button to find out how to get paid as a family caregiver in the US, just note that the ‘other resources’ I link to are several excellent books that will probably make you rage scream and a tool where the creators and I once had a very cathartic call where we basically rage screamed together.

The cruelest joke in all of this is that if you somehow manage to jump through all the hoops to find a program you qualify for, convince them you qualify, manage to enroll, and stay enrolled…apparently the states then try to recoup that money from the estate once they die. It's one more way to make trying to get financial support so unattrative that no one bothers.

In order to qualify, the person being cared for is required to have almost no income or assets. They make you jump through hoops to prove you need money to live, send you to unpaid training to do the things you’re already doing, require reams of paperwork to continue getting a laughably small sum of money, and then come after whatever is left over while you're grieving. This typically means the family home, which Medicaid permits you to keep despite their requirement that someone be penniless before they’ll do a thing to help.

It's hard to turn down any amount of income, though, when you're in a position where you need to quit your job to take care of someone. People who haven’t served as caregivers typically imagine care work is about holding hands and wiping bottoms. Care work today is about government paperwork, insurance claims, finding a fax machine, and bringing CDs of test results from one office to another.

So many Americans are being put in this unthinkable situation where they have to give up their career and their homes in order to take care of their family. They’re in good company.

Like the US, Canada has a patchwork of programs that I started to sort through ages ago and never finished. In a moment of extreme naivety, I assumed since Canada only has 13 provinces and territories I could list off all the programs. I had those tabs open for so long, but dealing with audits and immigration paperwork sapped my will to read about any government programs I didn’t personally need to know in order to avoid jail time. So, apologies to Manitoba, New Brunswick, Newfoundland and Labrador, the Northwest Territories, Nunavut, Prince Edward Island, Saskatchewan, and the Yukon.

Most places, mercifully, have national programs. This makes it easier to find information. It doesn’t mean you’ll be able to afford food, clothing, or shelter.

Ireland has the means-tested Carer’s Allowance with lots of rules. You’re allowed to share it between two people as long as you allow the government to dictate how you share responsibilities. The most you can earn as someone under 66 who’s caring for one person full-time is €236 a week in taxable income. Assuming the minimum requirement of 35 hours a week, that comes out to €6.74 an hour. In case you’re curious, the minimum wage in Ireland is €11.30 per hour. The average professional caregiver earns €18.43 per hour.

The UK has Carers Allowance, which gives £69.70 a week in taxable income to the primary caregiver. One of the eligibility requiremnts is that you earn £132 or less a week after tax. If you’re providing the minimum of 35 hours a week of care, you’re earning £1.99 an hour. The minimum wage in the UK is £10.42. The average professional caregiver earns £11.55 per hour.

In Portugal, household inome needs to be under €576.16 a month to, if I’m understanding it correctly, ensure the total from any income and the informal caregiver support allowance is a household income of €443.20 a month. The monthly minimum wage for a full-time worker (for one person, not a household) is €700. The average professional caregiver earns €1490 per month.

New Zealand offers a Supported Living Payment. Australia has the Carer Payment, Child Disability Assistance Payment, Carer Adjustment Payment, and Carer Allowance as well as programs for current and former young caregivers. They don’t provide clear numbers for me to rage scream at, so if you know how much these programs pay, please share it in the comments and know that I’m rage screaming with you.

Why do people who claim to not hate the disabled and regularly declare family caregivers to be saints treat them like criminals while paying them £1.99 (US$2.44, CA$3.35, €2.26) per hour to provide this essential labor?

Research from Stefanie Stantcheva suggests this cruel stinginess stems from a lack of trust:

“Trust in government (or lack thereof) also seems to be a critical element in driving support for redistribution. When faced with negative information about inequality (i.e., that it is high and has increased), respondents tend to say that they trust the government less…In all surveys described here, trust in government in the United States in general is abysmally low…This significantly lowers support for most redistribution policies and increases support for “private charity” over government policies as a better way to reduce inequality.”

The US is a country full of politicians who claim to hate politicians and politics. Medicaid is far from the only government service where applicants are treated as potential criminals — getting a new passport at the US Embassy is a real treat, as is the DMV and all those elementary schools with metal detectors. The early days of the pandemic demonstrated which countries trusted their government and which did not.

She also cites the usual fearmongering about immigrants and outsiders:

“In all countries in the sample, respondents think there are more immigrants than there actually are and that those immigrants are less educated, more likely to be unemployed, more reliant on government transfers, and more likely to benefit from redistribution than is the case. Respondents also think there are many more Muslim immigrants and many fewer Christian immigrants than there really are. It also appears that, in this instance, providing factual information does not have much power to convince people.”

The US has a long history of sabotaging things in order to deny support for those it deems undeserving. The US filled in all those public pools in the 1960s rather than integrate them, so I suppose it’s no surprise that westerners prefer to cut off our nose to spite our face in general. Better that all the disabled and their caregivers live in poverty than a few people get more than they deserve.

These aren’t necessarily the right explanations or the only explanations.

Personally, I suspect that much of our worst policies come as a result of the Christian theology that emphasizes man as fallen, and thus inherently sinful. How many times are we told that we’re always one step away from a war of all against all, it’s a dog eat dog world, it’s every man for himself and God for us all. The story of Job and the properity gospel have taught us to ignore the suffering of others, no matter how righteous they seem. Other interpretations of Christian scripture are radically different and, to me, far more uplifting.

Living through the pandemic has made it impossible to deny that a certain percentage of people openly support letting anyone who needs care die and others quietly support it without bragging about that view on social media. The way MAID is being implimented in Canada feels like it’s fulfilling their wishes. I support MAID, I just want it to give me the power to accept my time when it comes, rather than feeling like we copied our policies from Lois Lowry’s The Giver.

Of course MAID has turned into something dystopian rather than merciful. Just like the deinstitutionalization movement has resulted in so many people living and dying on the streets or in prisons. Just like so many social programs have turned into oppressive regimes of surviellance and control. Just like the asylums meant to heal turned into places of torture. Just like so many medical advances have come at the cost of marginalized communities. These policies were all enacted by the same people who decide how much family caregivers deserve to get paid. Our economic system just fits better with eugenics than it does with care.

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This article on the dystopian outcomes of using AI to detect fraudulent social payments makes it clear that quite a few countries, including Serbia, pay family caregivers.

One group that’s working to fight the mandatory poverty faced by the disabled in Canada is Disability Without Poverty.

In six more years all of the baby boomers will have hit 65. Will US social security and medicare run out of money? Only if we decide to let it.

Speaking of the baby boom, here’s an actual quote I read: “Since the basic needs of the elderly are nominally met by the state, people have less reason to have their own children as insurance for old age.” The article is  quite interesting, despite this line that made me nearly spit out my coffee.

I keep hearing the advice that we should be managing and preventing chronic illnesses with proper nutrition. Here's a reminder that it's not always possible and there are many unknowns in what 'proper nutrition' even is.

A feel-good story to remind us what's required for people to receive the care they should be entitled to by virtue of being human. All of these situations requiring a stranger to step in and rescue a 'solo senior' were the result of policy, not accident.

The Atlantic's book list for coming to terms with death.

"Not all that long ago, cancer was not just seen as tragically incurable; it was something to be ashamed of and hidden from friends and family."

"A non-dysfunctional explanation of a disorder doesn’t imply that treatment isn’t required. Psychiatry has been defining disorder based on debilitation, meaning treatment is justified, even if the disorder is not biologically dysfunctional."

Medical research doesn't want to bother with rare diseases. Which seems to make sense, except:

“NPC is rare in the sense that it is a known genetic disorder of a few thousand children. Something like Alzheimer’s disease, or Parkinson’s, or diabetes, or depression, affects tens or hundreds of millions. But these differences in scale are illusory. NPC is a narrowly defined condition with a known cause. Each of the other health problems I listed is a disease with widely varying expressions, causes, and treatment regimes. When you take into account the personal challenges of dosing, side effects, diet, sleep, and other activities that affect symptoms, the group size of people facing common diseases resolves downward toward a resolution of one.”

Katherine Boyle points out the way our fight to do away with suffering is causing harm:

“Though we may not realize it, nearly all of our modern cultural debates and ailments stem from the contemporary belief that suffering is not a natural or essential part of the human condition. The war on suffering has not only robbed us of resilience; it has sold us a mirage that is making us miserable.”