Democracy Diary: Mother's Day card from Kim Reynolds and IA GQP: "We hate you and other families of kids with disabilities."

TL;DR: Wish me a happy Mother's Day by fighting harder against those who are making my life and my kids' lives harder.

This week I got a Mother’s Day card from Gov. Kim Reynolds and the IA GQP. Despite Iowa’s $1.91 BILLION surplus, kiddo’s application for services was denied because “there is a limit on the number of persons that can be served.” Translation: Iowa Republicans have chosen not to provide services to thousands of Iowa kids and families who need them. The limit could be WAY higher than it is. Or they could remove it entirely. But they hate kids with disabilities and their families.

I’m in a Facebook group for families of kids with special needs, and folks post when “their turn has come.” For one Iowa waiver, they are now accepting kids who applied in December 2018.

This means there are kids in Iowa who have intellectual disabilities, or serious mental health conditions, or complex medical needs, and they and their families get NO HELP in Iowa for OVER FOUR YEARS (1). I think about this all the time. About the single mother in Red Oak who works a low-wage job without health insurance while her teenager with intellectual disabilities is hostile, or violent, or suicidal. And she gets no Medicaid, no respite, no nothing.

I know how hard that is because I have an equal partner, Cadillac insurance (2), helpful extended family, the incredibly inclusive City High, a great community and, for the moment at least, a different waiver that provides some services. Oh yeah, and I’m white and straight and married, so there’s a lot of discrimination I just don’t have to put up with. And kiddo and I STILL sometimes barely make it from one end of the day to the other.

Those of you who haven’t been living with medically complex kiddos for 17 years, and/or didn’t spend hours on the phone this week with DHS, Medicaid, UIHC Pediatric Specialty Clinics, and Veridian Credit Union trying to deal with things and get services straightened out might need a bit of backstory as to why this Mother’s Day card from the state is a real kick in the face to kids and their families.

Basically, there’s a program called Home and Community Based Services. It started because, a long time ago, parents were encouraged or forced to send their kids with disabilities off to state residential facilities. The idea — that it is the community’s responsibility to make sure all people, including those with disabilities, are cared for — is sound. But the residential facilities too often didn’t do a great job. Besides, some folks realized that people with disabilities and their families shouldn’t be forced to live separately just because some of them are more able than others.

And at the same time, some folks have caregiving needs that are more than one nuclear family (3) can provide. So, Home and Community Based services are the solution. People with disabilities live in their communities, or with their families, but they get the support they need: paid staff to provide respite for their unpaid family-member caregivers, assistance with daily activities (shopping, hygiene, housekeeping), Medicaid as a backup to their private insurance (if any), or a variety of other services they may need.

Okay, you may say — but hate? Hate is a strong word. I’ve seen pictures of Governor Reynolds and other Iowa Republicans smiling at children and families - sometimes even those with disabilities! They say words like “family values!”

Hate isn’t an emotion, though. As bell hooks said “[Love] is about what we do not just what we feel. It's a verb, not a noun.” Or, as we used to say in the Augsburg Confession in the Lutheran church in which I grew up, harming others is about what we have done and what we have left undone. So even if they smile and say words that sound nice, what Iowa Republicans have done and left undone makes my family’s life - and those of other families like ours — demonstrably worse (4). It makes us tired, and sick, and suffering, and sometimes dead. That’s hate.

I know I’m not special. I know Republicans hate all kinds of children and parents: children who are raped and need emergency contraception. Children who pee and poop. Children who read. Children who eat.

To paraphrase Franklin Delano Roosevelt when he signed the Social Security bill, we can’t as a community protect each other from all of the “hazards and vicissitudes” of life. Given the kids I have, I was always going to have to be tough as a mother. But our lives — and those of other people with disabilities in Iowa — don’t have to be as tough as they are.

So, whatever you’re doing to fight these people, please do more. (If you want, you can let others know what you’re doing in the comments below).

Footnotes:

(1) I’m a bit vague here to protect my family’s confidentiality. Some waivers have very short lists, with a waiting period of months. One is over four years. A bunch of people are about to get kicked off Medicaid, though, which might open up some spots!

(2) I hate that there is such a thing as “Cadillac” insurance. Ever since my kids arrived, I’m not a wage slave, I’m an insurance whore. And I’m lucky that we’ve had the skills and privilege to get them insurance that mostly provides what they need. So let’s be clear: Health care is a human right. As Timothy Snyder defines our malady in the US in his book of the same name, it’s “physical illness and the political evil that surrounds it.” Also, something like “We don’t have a health care system in the United States. We have a wealth transfer system that incidentally provides a small amount of health care.”

(2) Nuclear families are a stupid idea anyway, brought to you by necrocapitalism (I thought I just made this term up but, of course, someone else already thought of it) and the Fossil Fuel Happy Hour (term coined by Kamyar Enshayan).

(3) It’s not just Iowa Republicans, it’s all of them; and it’s not just children and families; Republicans wreck everything, and have basically since the Depression and the “party realignment” that made Republicans the more strongly white supremacist party instead of the Democrats (which was the party more aligned with white supremacy from the Civil War to the late 30s.). Don’t “both sides” me, because I get that Dems suck, too - they’re killing us by not retiring Feinstein, they’re killing us by not re-regulating all the railroads and banks and other stuff the R’s deregulated, etc. But the Republicans are killing us more with their fascism. I appreciate Biden trying to extend an olive branch by specifying MAGA Republicans versus others, but in practice, there are no others. They’re no longer a functioning party within a democratic system.