Special Needs World

The web of bureaucracy that ensnares parents of disabled children

“I interacted with no fewer than 12 healthcare providers, their representatives, or insurance companies today. It might have been more. But this is medical motherhood. I tend not to complain about the sheer amount of administrative work that goes into managing a family that includes a disabled person or persons. But today, I'm complaining. Because I'm tired.” — Dawn Schoppe, medical mom

TW: Sexual assault of a minor; child death; food insecurity

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.

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 aide 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 case workers (one for the county and another for the state), their many program evaluators, the home modification contractors, our home aide 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, childrens’ 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.

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Next week’s essay will dive into the part of Special Needs World that is the Social Security Administration. Don’t miss it!

What I’m reading this week

A round-up of news for parents of disabled children.

• From The New York Times: What Activities Can Unvaccinated Children Do? Advice From 828 Experts.

“I think a lot of families are frustrated and feel left out and anxious as to how to navigate life now,” said Dr. Sahera Dirajlal-Fargo, an infectious disease pediatrician at Case Western Reserve University.

…“Isolation of children is detrimental to their mental and physical health,” said Kevin Andresen, leader of the Covid response team for the Colorado Department of Public Health. “Finding safe ways to have children socialize and play needs our full attention while we continue to evaluate vaccine efficacy in this group.”

• From NBC News: Bill heading to Congress to ban seclusion, restraints in schools

“The data tells us that seclusion and restraint practices in school are dangerous, ineffective and predominately used against kids of color and students with disabilities,” Murphy said in a statement. "These practices leave traumatic, and sometimes fatal, fingerprints on those affected, and we need to stop them."

...Seclusion and restraint practices are commonly used in schools, most often on boys and kids with disabilities, according to the U.S. Government Accountability Office. Some 101,990 students total were secluded or subdued with a physical or mechanical restraint during the 2017-2018 school year, the CRDC found.

• From Holland Bloorview’s Bloom Blog: Ableism isn't easy to talk about. This bold new book shows you how

In bright, bold images, it follows a group of children, with and without disabilities, navigating their day in an urban environment. They move in different ways—fast, slow, on feet, in wheelchairs, using scooters, bikes and canes. Along the way they work together to overcome obstacles—whether it's learning American Sign Language so everyone can communicate or building a small ramp so wheelchairs can get over a step into the ice cream shop.

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