The cost of being disabled

The parent / family phase of life

I've been debating writing a post about money for months and months. Was there a purpose that would serve A-, and other disabled folks, to writing about the financial impact of raising a disabled kid in an ableist, capitalist society?

Yes. There are government programs being decimated, that have a real impact on disabled kids and families who grow up to be disabled adults, and I think shining a light on the disability tax for kids is an important piece of disability tax as a disabled adult.

So here goes. Capitalism and ableism makes it financially impossible, or incredibly difficult, to try to raise a disabled kid in a disabled-centering way, and avoid ableist institutions. And no matter what, our kids suffer for it.

I'll be specific.

For us to unschool, Daniel had to stop working. And not in one of those "I'll just stop tutoring for a few years until my kid goes to preschool / kindergarten and then get back at it." But in a way where we knew this was it - he very likely would not work again. And we had to figure out how to structure our finances accordingly. And unlike other families who have all the options, and choose homeschooling, that isn't our case. Our choice of school was segregated, behavioral schools, where routinely we see flyers passed around FB of non-speaking kids who went missing from their schools (there was that 3 year old who was found blocks away at a deli, yay!), who have no flexibility and teach kids to push around coffee carts. While people see our ability to homeschool as a privilege, I see the ability for their kids to go to school as a privilege.

Some states will pay the parents to be the caregivers of their disabled kids, but NYS is not one of those. So you either quit, because your kid's needs are such that you can't just hire workers easily. Respite workers... who gets paid wages that are abysmal. That are lower than the standard babysitter wages I see posted in my local parent FB groups. Resulting in a massive shortage of caregivers, and no way to solve it by just having it be you instead. This is the caregiving crisis that advocates are trying to fight - but I'm afraid I don't know where to point people to join that fight! If someone else knows, please share!!

Then therapies. We get a system where you should be provided therapists through the education system but there are a bunch of issues (at least in NYC). One, that I wrote about, is the turnover of therapists when your kid turns 5. Another is the turnover of therapists in school. Another is that the therapists are most easily accessed if your kid is in school, and then you aren't able to get the "GLP, AAC, trained, ND-affirming speech therapist", you just get "speech therapist". So to be able to keep A- with the therapists he spent 2 years getting comfortable with, who have the expertise he needs, we have to pay privately for them starting next year (I have out-of-network insurance, so we'll be paying about half). We're going to reduce our therapy a LOT to make it work financially - maybe one session every other week? - but that's a really big expense still.

And there's the cost of stuff, as y'all can relate to. Sensory swings, special clothes for some kids. The stuff where you have to brainstorm how to do things and support learning, and buy new things to try to make it work - and hope it works. Of course, many people are more creative than me and are figuring it out with what they have at home, getting things second hand, and on buy nothing groups (Also the disability program in NYS theoretically covers things like sensory swings and clothes, but over the past year we never managed to actually get reimbursed for those things despite filling out a lot of paperwork), but that takes time and energy.. Something we don't really have!

Which brings me to the social resources. Part of how we as people resource ourselves - financially, time-wise, etc - is through our village. And for many families you form a village through play dates, connections at school, having folks take care of your kid. But if you have a kid who doesn't want to play with other kids, who needs their space more predictable, who can't just show up at a playground at a specific time, who communicates in unique ways so can't have a revolving door of babysitters, who can't have birthday parties, etc, that village is really hard to form. And this is something I heard in the anti-internalized ableism group I was in from disabled adults too. For many, the mutual aid communities they want to join, require more energy and spoons or physical abilities than they're able to do. I remember leah lakshmi piepzna-samarasinha also mentions this as an aside in her book Care Work - that there are disability community who practice mutual aid but not all disabled people can connect with the folks with the resources to help out, so they're marginalized that way as well.

Then there are other costs for having to get specialized help. For example, there are dentists in NYC that specialize in working with disabled kids, but they're all out of network and extra expensive, and we'll have to do a few appointments to get him comfortable. There are extra costs for kids who need sedation (very high extra costs!), etc. We finally bit the bullet and are going with a "concierge pediatrician" (it's actually A-'s amazing pediatrician who went private and because capitalism, can't accept insurance), because having to go to a doctor's office is a thing, and it's been a barrier. Once I even asked around for if there is ANY doctor's office in Brooklyn who at least does social stories for kids - that start from going into the lobby all the way to meeting the doctor - and then follow the actual routine from their story. Crickets. Anyway, the concierge pediatrician requires paying out of pocket each month too.

And lastly, the one that's the most stressful for me and I think most of us, is that in terms of long-term savings (for those of us lucky enough to be able to save) there's our own retirement, and there's lifelong savings for A-. There are deteriorating programs for disabled people, ostensibly meant to keep them out of institutions and in homes, but from my limited experience I see cuts to funding, below-livable wages for caregivers (which means a shortage of caregivers), increasing red tape and bureaucracy to access anything, all of which means in an ideal world there is extra savings for A-. And we can’t follow the financial advising advice we got ages ago - we’ll have more expenses and a reduced income temporarily but then our kid will go to school and turn 18 so we’ll be able to save for our retirement again then.

So in short, going from a 2 person to 1 person income, having higher expenses all around, and needing to save for retirement plus an entire life. And THEN this doesn't end, of course, when A- becomes an adult because then he will have disability tax to pay as well.

I'm hoping folks can share any organizations or advocates that you think are important to follow and support who do work around this!