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The web of bureaucracy that ensnares parents of disabled children is difficult for others to even imagine.

COURTESY PHOTO: SHASTA KEARNS MOORE - A bubble chart with 77 different titles. The author explains that these are all the entities she must interact with for her disabled children as part of "Special Needs World."

Three years ago, I was on a beach weekend with all of my mom friends, the ones who also have kids with significant medical needs.

It's probably easy to imagine the scene: wine, jigsaw puzzles, overstuffed couches.KEARNS MOORE

What may be harder to imagine for those who don't live this life are the topics of discussion at our retreats. Things like:

• Will my husband and I ever be able to travel again since air travel is so difficult for my daughter and I can't leave her with anyone else?

• Should I hormonally stunt my 7-year-old's growth so he stays small? Must I give up on the idea that he will ever be able to get himself out of bed?

• Does my child deserve to be segregated from the public school down the street? Or do I spend thousands of dollars on a lawyer to contest the school district's decision, knowing that most special education parents don't win?

• Because of my 8-year-old daughter's disability, she is starting puberty already. Should I shave off her pubic hair for easier diaper changes?

• Is my child starving to death? Does he need a surgical implant so I can feed him?

• My 9-year-old's doctor suggested I put her on birth control so that a life-threatening pregnancy doesn't become the way I find out she's being raped. Can you believe that? But should I do it?

• Do I give up intimacy and privacy in my own home? Is it necessary to allow aid workers to work around the clock for my daughter? Is it even safe to allow that many strangers in my house?

• How long will my child live? What will it be like at the end? Will I have to make a decision to let him die?

Someone had brought markers for coloring. I picked one up.

I drew two circles with each of my sons' names in them. From there, I drew spokes and more circles, each with the title of a person or agency that I had to interact with because of their disabilities.

I called it Special Needs World.

This is what it looks like to care for someone with a disability in the modern age. A crazy-making Rube Goldberg-esque process that sucks out your soul and saps your strength, leaving you very little time to actually care for your child. Special Needs World is now my shorthand for the overwhelming and othering systems that parents of disabled children have to navigate.

By the time I was done with my depiction of Special Needs World, there were 77 circles.

I drew the school ones in red. There were administrators and teachers and specialists and aides and school bus drivers and front office staff, nearly all of whom needed to be notified if my child were to be absent for one of their many medical appointments.

In blue were the medical folks. There are doctors and therapists and PAs and NPs and who-knows-how-many other designations, as well as all their office staff and their individual, idiosyncratic forms to fill out.

Then comes the companies who sell the items the medical professionals prescribe. The people who provide wheelchairs are different than the people who provide diapers, who are different than the people who provide medicines. And you have to know which is which. For example, does Pedialyte come from a pharmacy or a medical supply company? Try one and find out — after several weeks of it not showing up. Or, spend an hour on the phone and talk to someone who has no idea either.

After that, in brown, the entire health insurance apparatus. We currently are lucky enough to be privately insured through my husband's job and have Medicaid as secondary. So, two systems to navigate, numbers to call and approval processes to sift through or appeal.

In purple were social services: my child's caseworkers (one for the county and another for the state), their many program evaluators, the home modification contractors, our home-aid workers, and their separate agencies.

Then family in orange. I put them in because even though I would still interact with family if my kids were typical, I don't think I would lean on them nearly so hard financially and for respite. I even added pets — the cat I got for my mental health and the dog we got specifically because her size and breed would be good for therapy.

I didn't add circles for the wild goose chases. There were plenty of those that led to dead ends.

When I finished my picture, I realized something: in most of the circles were people paid with taxpayer dollars.

On the one hand, this is wonderful. Most people really do care about the plight of disabled children and are willing to put their money where their mouth is. That is why these programs exist in the first place. That is why Americans vote for politicians and policies that take their money (in the form of taxes) to give to people with disabilities (in the form of benefits).

That part is beautiful. But if my experience — and those of every medical mother I've talked to — is any indication, taxpayers' compassionate intentions are not well-executed.

As has been made clear to many Americans during the COVID-19 crisis, our country's collective bungling over its medical, social services and K-12 systems is not a theoretical or abstract harm. In medical motherhood, government inefficiency is no less than the difference between freedom and captivity, success and failure, life and death.

These are huge multi-billion-dollar institutions, set up for the express purpose of helping people with disabilities. Social Security, Medicaid, early intervention, K-12 education, vocational rehabilitation, social services, children's hospitals — so many places use our kids to make a play for more money.

Once they get it, so many of them seem to use it to set up more hoops for us to jump through.

And we do. For them. For our kids. We jump.

Shasta Kearns Moore lives in a Portland suburb and publishes medicalmotherhood.com, a weekly e-newsletter for people raising disabled children.


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