“It hurts so good.” — my son re: the COVID-19 shot
The cloudless sky is a brilliant shade of blue, day after day. It is one of the many bizarre things about the early days of quarantine here in northwestern Oregon.
The state’s disability services providers are quick to promise continued pay for unionized caregivers when they aren’t able to work. But they fail to offer a solution for family caregivers who have to simply do without help when they can’t or won’t break quarantine to have Medicaid workers in their house.
The school system, the social services system, the health care system, all of them protect themselves first before any thought is given to the end user — the needful person that these complex institutions supposedly exist to serve.
The lockdowns give the rest of our society a taste of what it is like to have many freedoms and abilities taken away — a taste of what it’s like to watch as the safety nets, which everyone assumes would catch you, fail.
Parents in my community — parents of disabled kids — are sharing memes amongst ourselves. One is of a beaten and bloody Brad Pitt with the caption: “Welcome to the club.”
The topsy-turvey Special Needs World that families of disabled children navigate has expanded to everyone. Everyone sees what it’s like when there are no viable childcare options, as parents of disabled children so often experience. Everyone sees what it’s like to deal with a senseless for-profit medical system, as parents of disabled children so often experience. Everyone sees how far away the schools had gotten from a focus on children, as parents of disabled children so often experience.
As NPR’s Scott Detrow says on March 26, 2020: “… every single person in the country in one way or another is just having to rethink every single thing they do right now and just has no answers about when that's going to end.”
Hmm. Sure sounds familiar.
I had high hopes in those early days of quarantine. I thought that maybe — just maybe — COVID-19 would be the catalyst for change in a number of taxpayer-funded systems that most Americans were too privileged to notice weren’t working.
Now that vaccines are here for children ages 5-11, and herd immunity is in sight, it feels like the light is finally beginning to shine at the end of the tunnel. But will we walk out into a sunny new day? Or will medical parenthood still feel like walking in the rain?
Just in the last week I have:
Written a letter to explain that — despite Oregon spending twice as much as for a typical student — my children only receive access to a very poorly designed online school platform and a grand total of three weekly 15-minute class Zooms that often get canceled. All academic accommodations are made by me, unpaid. (But even that work is preferable to in-person school because of the enormous amount of work that would take.)
Attended a meeting with the regional director of a wheelchair supply company in which half a dozen parents complained about how much work it takes us to get their company to actually produce the medical equipment our children need. Some of the parents now choose to pay thousands more per year to find an insurance company that allows them to chose a different supplier.
Yelled at a representative of a company whose job it is to make sure that my state’s Medicaid does its job so that the wheelchair supply company does its job. (How many people does it take to order medical equipment agreed upon four months ago? I’ll let you know. I’ve spoken to 10 directly so far…)
Complained to my local children’s hospital about the roll-out of the COVID-19 vaccine program for 5-11 year-olds. Vaccine appointments were quietly made available on a website and quickly snatched up by employees in the know and their friends — NOT the highest-risk pediatric patients who have sacrificed the most during the pandemic.
Am I taking crazy pills? Why are these programs still not putting the needs of the most vulnerable people first? Why is it my full-time job to make so many other people do their jobs?
And yet. Change still feels far off.
Under that brilliant, bright blue sky in April 2020, Jasper and I ride our bikes to his elementary school to pick up some of their meager offerings: bagged school lunches and printed worksheet packets. Jasper looks longingly at the tiny daisies and bright yellow dandelions through the now-padlocked fence to the schoolyard.
“It’s a shame that all those flowers will go to waste with no kids to pick them,” he says. I nod, also saddened to see the empty playing field.
We continue on to pick up the supplies from school staff, who don’t have students but still have paychecks.
They won’t give me a packet for Mack, Jasper’s wheelchair-driving twin, because he isn’t present. I had left him home with his newly working-from-home dad. The fact that a paper packet would work better for Mack’s education is not a consideration. Their box to check is more important.
I just roll my eyes and don’t push the issue. I don’t need another fight.
On the way back, Jasper spots a small patch of schoolyard outside the fence. In this small corner, outside the lines, he stops and picks a bouquet of daisies and dandelions. He hands them to me with a smile. We hug.
Then we continue on our own way.
Medical Motherhood’s news briefs
• From The Oregonian: “Oregon behavioral health providers warn of ‘collapse’ of system to treat children”
Oregon’s mental health system for children was inadequate even before the pandemic, something that Christy Smith of Springfield experienced as the mother of an 11-year-old son with high needs whom she and her ex-husband adopted from foster care. Smith also works as a special education teacher in Springfield and said she has seen first-hand the breadth of children’s unmet needs for mental health care. “The children I work with are living in poverty, in foster care, and most of them don’t get any of the mental health services they need,” she said in a recent interview.
Our economy hasn’t worked for people like me in decades. It’s long past time that our elected leaders act in the best interests of the people who elected them. We do not need means testing, work requirements and other antiquated restrictions based on an out of touch idea of how the economy works for most people. We need leaders who understand that Americans are exhausted by the stress of living paycheck to paycheck, and worrying about whether they can provide for their children. We need the expanded CTC to be made permanent.
Finding quality and affordable child care is difficult for any parent. When you have a child with special needs it is almost impossible and adds so much more stress. It's not only hard to find but when parents do find quality care, the cost is too much that the average family can't afford it. In a new proposal being presented to Congress, parents and childcare experts are asking for a legal requirement for states to have "accessible and inclusive preschool programs for children with disabilities."
• From Condé Nast Traveler: “The Travel Industry Is Waking Up to the Needs of Neurodivergent Adults”
The movement began with Accomable, a startup focused on finding inclusive travel rentals for neurodivergent adults and beyond. Established by travelers with disabilities in 2015, the startup sought to find accommodations for many types of needs, with features from wider doorways and entry areas to handicap-friendly showers and quieter bedrooms.
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