A couple of years ago, I wrote an article about the groups that were springing up online for parents to help each other with the special education bureaucracy. As part of my research, I subscribed to several Facebook pages for parents of autistic kids. I never unsubscribed.
Before the pandemic, moms used these sites to get help about ABA therapy or the paperwork for social security. Some of the posts were heart breaking, especially when the parents were poor, had no network of support, and had children with severe autism – nonverbal, self-injurious, no sleep mechanisms, no behavior training. The level of desperation on those forums reached a new low in the past year, because parents and caretakers were left stranded by the state.
In August, a 25-year old woman, who is the caretaker of her 24-year old highly autistic cousin, reached out for help on Facebook. She posted an adorable picture of the two of them smiling broadly with their arms around each other, but she described a much tougher situation. Her cousin didn’t sleep more than four hours a night – a common issue with autism – so she couldn’t sleep, because he would escape the house or eat the stuffing in the sofa cushions.
Now, a person can deal with that situation for a few hours a day, but this young woman managed this situation full time for nearly two years, because her cousin’s state-run day program was closed due to COVID. She had no help from family. On a good day, there is very little help for adults with autism — when the state closed down poorly run institutions in the 1970s, families were forced to take on greater responsibilities — but the pandemic shut down whatever little help exists for those families. So, this poor woman reached out to some strangers on the Internet for help.
Families with high needs children depend on the state to help them. Those without money and networks have no back-up systems. They need help with multiple services spread across various bureaucracies — education, housing, respite, camps, food, therapy, and medicine. The system is hopelessly complicated. (Getting help from the various bureaucracies is a very depressing Easter egg hunt.) Wealthy families hire lawyers to make sure that their disabled children get support from the state, but less wealthy families post cries for help on Facebook.
Like I said, the system is terrible on good days, but the system entirely collapsed last year. Three-year olds with cerebral palsy did not get physical therapy. (I interviewed a physical therapist who talked about the impossibility of helping young children with severe disabilities last year.) Young adults did not leave their homes for nearly two years. Caretakers cried for help from strangers on the Internet.
Even though these various systems did not provide their clients with services, the workers in the system — administrators, social workers, physical therapists, administrators, the bureaucracy, cafeteria workers, janitors — were paid. Some tried to provide quasi-services through the computer at that time, but many didn’t. You can’t create a day program for adults with autism over Zoom.
Now, I don’t want to demonize those individuals. Most are very nice people who do unglamorous, underpaid, unappreciated work. But the reality is that the system as a whole maintained itself for two years, without providing a service or benefit to some very needy individuals. The state did not compensate the individuals for their lost services with vouchers to purchase those services elsewhere. They didn’t even say, “sorry.”
Throughout this pandemic, disabled people and their families were completed ignored by government. Not only were existing programs shuttered, but there was no recognition for the unique and extreme challenges as government scrambled to provide some compensations. Biden’s much lauded Family Tax Credits did not provide parents with special needs children more money, even though their children have much more expensive needs.
Some tried to justify the lack of services saying that people didn’t really need that help anyway. When asked about the indisputable learning lag that students experienced during remote education, one union leader in Los Angeles said that it didn’t matter that students didn’t learn to read or their multiplication tables, because they learned about resilience and survival instead. The obvious response is, “if teaching kids math and reading doesn’t matter, then why are we paying you?”
It seems counter intuitive, but some government employees are now arguing that their job doesn’t matter. I don’t know. It sounds like my Facebook friend with the 24-year old autistic cousin could really use some help. ✓
A bureaucracy is a government agency that is tasked with implementing laws or providing public services. When political scientists think about bureaucracy, they mean more than just guys in suits pushing papers from one side of their desk to the other. A government bureaucracy includes everything from the social security office to public schools to NASA to sanitation. If your paycheck comes from a government office, you are part of the public bureaucracy.
Some political scientists believe that our democracy has become stuck, because our bureaucracy is now too huge for any elected official to control. It’s too hard to make change and to implement the will of the people. The democratic engine is slowly rusting and might even seize up, because there are just too many people employed by the state now.
I think that we are now witnessing a whole new situation. The state is self-sustaining even when it does not do exactly what it was created to do. Its purpose no longer matters. Its main purpose now is to provide its workers with a paycheck; everything else is optional. The Self-Servicing State is even more nihilistic that political theorists could have predicted.
When it comes to social policy, I have always been on the left side of the spectrum. I believe that government needs to create equality of opportunity for its citizens. As a parent of a child with autism, who socializes with people with extreme caretaking needs, I am even more sensitive to needs for safety nets. I live in a high tax state, and always planned to stay here, because my son will need a lot of government support in the future.
However, the abandonment of families like mine has shaken me up. Why should I pay taxes that are intended for needy families with disabilities, but we never actually get anything for that tax money? Schools and services are starting to open and to return to full operation this month, but without extra support or even recognitions for those that they failed for two years. Meanwhile, kids like mine have regressed seriously and caretakers are beyond exhausted.
Will these experiences permanently change my politics? I’m not sure yet.
Apt. 11d 
“The state is self-sustaining even when it does not do exactly what it was created to do” when tested in the middle of the pandemic, I agree that there were swathes of the system that did not provide the service they were paid to provide. I don’t think that says something definitive about the state, though. I think it exposes that a lot of the caring work that we need in society is undersupported and undertrained and underpaid.
Expanding services appropriately and compensating the providers for their labor would be expensive. Inadequate government subsidies might help the wealthier people, since they could supplement to obtain services, potentially. But for those looking for aid on social media (I’m on a parents covid assistance FB page, and read wrenching stories from parents looking for aid, much like the one you describe of the young person caring for her brother), I don’t think it would do much.
My politics haven’t changed because they were pretty far in the direction of providing social services, in favor of universal basic income, universal health care, more labor regulations and more safety nets along with a recognition that taxes would have to be higher to provide those services, and not just on the “rich” (which even progressive voters see as a group richer than themselves). Taxes on probably half of us would have to high enough that we would feel the effects of the taxes on our finances.
And further left of me where I see some, say into the arena of defunding the police and to declaring cars homesteads (if one lives in the car) go further than I am willing because I do believe that human beings are constructing to respond to incentives and disincentives.
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Most nursing homes are privately run, but could not remain functional without the large influx of income from government programs. They did not shut down (nor could they); the trade-off was a significant die-off of nursing home residents (and some staff). Would this have been a preferable alternative? We can see how this is working out in Miami Dade, despite the availability of vaccines (which were not available during the shutdowns).
When my daughter was receiving early intervention, most of the service providers were middle-aged women. Middle-aged women who were highly educated and dedicated to their jobs, but not paid as highly-educated, dedicated professionals. Sure, you could say that they chose that path, but these women were of my mother’s generation—there were fewer paths open to women at that time, so they picked what they could (my mother became a nurse because she loved science. Had she grown up in my generation, she would have been a doctor or a researcher—paths not open to a working class girl from a factory town in 1961, when she graduated from high school). I would have been completely frustrated too, had I had to deal with the complete lack of services (which would have meant long-term unemployment for me, followed by TANF/SNAP/WIC after unemployment ran out, and scrambling to find healthcare providers that would accept Medicaid after my health insurance ran out—because shutdown meant shutdown of childcare too). I get that. But I also, as a worker, get why those front-line providers (teachers and other service providers) would not want to risk their lives. I don’t enter confined spaces on my jobsites without the proper procedures in place, and there has been NO political will from either party to set forth proper procedures, because both parties have been completely cowed by the half of our populace that believes COVID is “fake news”, a conspiracy against Trump, no more dangerous than the flu or a bad cold, and an excuse for Bill Gates to inject people with mind-controlling microchips to further the march of the Deep State and pedophiles kidnapping and abusing children for adrenochrome. (I understand it isn’t half the populace where you live, but it is where I do and this is one of the “bluest” states in the nation. A friend of mine who is an educator who loved her job took early retirement because the small town where she lived is majority anti-vaccine).
I get being frustrated that teachers and service providers still got paid despite not being able to work (or work effectively, if they were in a district that had online education and services and a critical mass of populace that had online access). But what was the alternative to that? If you don’t pay people under these type of circumstances, they will leave and not come back. The older ones will retire and the younger ones will get a different, more viable profession. What were other countries doing? Countries with better services and a bigger safety net?
Worth a mention. Tomorrow is Labor Day. No one begrudges the people in my profession, or any other dangerous, primarily male profession, the right to on-the-job safety via procedures and PPE. That was a hard-won battle of the past, but we have it now. But they did, and currently DO, begrudge the primarily female teachers and other service providers for the disabled the right to on-the-job safety via procedures and PPE. A critical mass of the populace, and damn near all the political representatives, think it is out of the question to require vaccines for those able to receive them, or PPE, social distancing, and other practices to ameliorate the danger from COVID. I’ve been on jobsites where the number of workers is similar to that of Miami Dade school district. I’m on one now (not right this minute; it’s Sunday). I guarantee you that if fifteen workers on this jobsite were killed, the jobsite would be shut down, all public funding would be cut off, all private investors would be screaming for the heads of those in charge, and there would be lawsuits galore. Y’know, in addition to the grieving families of those killed.
We already know what the solutions are. The workable solutions require more money and are politically unpopular. But the real problem remains as always: we, as a society, do not value those involved. Any of them. Not the teachers, not the therapists, not the paraprofessionals, not the kids, and not the families of those kids. They are expendable. A waste of money. That is how our society looks upon children with special needs. Their parents are resented for bringing children “like that” into the world and not magically (“poof!”) being able to generate the requisite amount of money needed to DIY.
I’m just a blue-collar working stiff. Society generally looks down its ski-slope nose at me, but grudgingly accepts that my job is necessary. At the same time, there is a seething dislike for our (tradespeople’s) uppity attitudes re: pay, benefits, job conditions, respect….and so we’re still in the position of having to fight for all of the above so as not to be the literal peasants our ancestors were. But we’ve never progressed (or perhaps we did for a short time, for a limited number of people) to thinking that the jobs of expendable people you mention are necessary. There’s a strong contingent of “leave ’em by the side of the road” feeling.
What are the civilized nations doing?
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Nursing homes, at least in Lincoln this spring, could not get staff if they required them to be vaccinated. This was somewhat infuriating because there were visiting restrictions still in force making it hard to see mom even though we were all vaccinated and the staff seeing were in much closer contact. I think it would have had to have been a state-level requirement to have worked, but there was no chance of that with Governor Ameritrade.
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The Wall Street Journal points out that there’s a shortage of school bus drivers: https://www.wsj.com/articles/schools-are-open-but-dont-have-enough-school-bus-drivers-11630760402?mod=searchresults_pos2&page=1
School districts across the country are grappling with a shortage of school bus drivers after some drivers resigned over worries about being exposed to young unvaccinated children and others quit over requirements that they get a Covid-19 vaccine.
(…)
In mid-August, the district announced that all employees would need to submit proof of full vaccination by Oct. 15. The week of Aug. 23, approximately 10% of bus drivers resigned, which bus vendors said was “likely driven by the vaccination requirements.” Approximately 70 drivers resigned on Aug. 27 alone. The shortage meant the district couldn’t provide transportation for about 2,100 students.
I recommend the entire article.
Both groups of reluctant drivers are driven by fear–either fear of exposure to unvaccinated people, or fear of the vaccine. Also, people refusing to be forced to be vaccinated.
I don’t believe it’s possible to reason with fear. The only thing the school systems can do, in my opinion, is increase pay and benefits to the point that people are willing to take the job. It’s not an easy job to fill, as the split shifts of 6 to 9 and 2:30 to 4 make it very difficult to find other employment.
A quick online search turns up articles reporting that bus drivers were laid off during the pandemic. Not paying them during the pandemic meant (presumably) many of them found other work, which paid better or had better benefits.
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I hire bus drivers. It has been hard this year. We did lay 5/7 of ours off during the pandemic, and that had an effect. But also a lot of our bus drivers, anyway, are retired or semi-retired folks who are/were supplementing their income. Some found other jobs but some just have cut back on their expectations whether that’s not traveling or making a change in where they live, etc. One moved in with her adult children to supervise their kids for virtual school, and then it’s been working out.
I think a lot of people who were picking up extra work are choosing not to do that right now.
I know for me this pandemic has made me weird about money. On the one hand I feel a bit like we should bounce back and live! life! We had planned to do an Italy/Europe trip with the kids in summer of 2020 or spring of 2021 and some of those savings were kind of nice to have on hand. I usually travel to the States at least once a year. Now I’m thinking if my job ends up over, do we really need to do those things at all – life has been pretty good without. Other than the continual existential dread that is.
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We’re just being really patient at the start of the year with the bus. The first day, it was a half hour late on pick-up and over an hour late to drop off at school because she picked up a group of the wrong kids and had to bring them back. It’s gotten better, but it’s very clear the woman has never driven a bus before this year.
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“We already know what the solutions are. The workable solutions require more money and are politically unpopular. But the real problem remains as always: we, as a society, do not value those involved. Any of them. Not the teachers, not the therapists, not the paraprofessionals, not the kids, and not the families of those kids. They are expendable. A waste of money. That is how our society looks upon children with special needs. Their parents are resented for bringing children “like that” into the world and not magically (“poof!”) being able to generate the requisite amount of money needed to DIY.”
All of that.
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Lubiddu wrote, “because both parties have been completely cowed by the half of our populace that believes COVID is “fake news.””
Are there areas where it’s more like half? Sure–but the current US stat is that 75% of all US residents 18+ have had at least one shot.
“What were other countries doing? Countries with better services and a bigger safety net?”
Just about no developed country shut their schools down as long and hard as US blue states and cities.
“But they did, and currently DO, begrudge the primarily female teachers and other service providers for the disabled the right to on-the-job safety via procedures and PPE.”
How many fully vaccinated teachers have died of COVID? That’s the most effective form of PPE there is at this point.
Also, there have been some studies on this, and teachers do not have an especially high COVID mortality rate compared to the general public.
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Oh, yeah, and US schools got tens of billions of extra funding for COVID stuff in 2020-2021.
https://www.dallasnews.com/news/education/2021/06/03/texas-will-distribute-55b-in-federal-pandemic-aid-to-schools-but-how-much-will-make-up-the-states-own-funding-remains-unclear/
This summer, Texas alone was distributing $5.5 billion in federal school pandemic aid.
The feds have been raining money on schools for nearly a year and a half. What happened to it?
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On the larger point I don’t have the experience of having a child with a disability but I am pretty heartsick about what we get with our government. Canada’s Federal election is about to turn the country over to Conservatives, who claim fiscal responsibility but don’t deliver even on that measure over and over. I’m considering retraining to teach or work in long-term care, even, although I suspect I’d burn out in the latter.
I feel like my lesson for this whole thing is that we need other people with expertise to take care of those who are vulnerable.
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What is happening in Canada??? Justin Trudeau was pelted with rocks at a campaign event?
https://www.zerohedge.com/political/justin-trudeau-pelted-stones-campaign-event
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On Wednesday, I’m interviewing that women caring for her cousin. I think I’m going to have to write something about this for a mainstream journal. Ugh. I had pretty much decided to walk away from writing, because $1 per word ends up being less than minimum wage. So much work. Going forward, I’ll do one or two pieces as labors of love, but I have to reinvent myself. AGAIN. Sigh. But first, I’ll write this story.
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People like me do really need to hear the stories, because they are not a part of our lives. I am deeply invested in trying to understand from other points of view, but I can’t when I don’t know about it. And, as we know, the people under stress hanging on, just barely, don’t have the time and energy to tell their stories.
So, a labor of love but one that has the potential to make a difference (though you have to put your own oxygen mask on first).
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Laura, I’ve seen our school system here in Maryland fail families with special-needs kids in the past year and a half, and it’s led me to wonder: Can those parents sue the school system, the county, or the state for services that are mandated by law but weren’t provided during the school shutdowns? Is there some sort of legal “force majeure” loophole that lets governments off the hook during declared emergencies? Nobody seems to know. I get the impression that the people who need answers to these questions are reluctant to ask them, because they’re not used to seeing the school system, the teachers’ unions, etc., as their political adversaries. Have you seen any journalists cover these issues, or will your forthcoming story touch on any of these questions?
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I’m not sure what I’m going to write yet, because editors don’t like to publish “bummer” stories.
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There are groups in Washington asking questions and suing and using organizations like Northwest Justice Project to work towards getting the services the state is legally required to provide. One big problem is that families are desperate, sometimes, resulting in settling for less than they are owed in order to avoid protracted battles. And, another is that these cases must be brought individually by some organizations (ones that receive Legal Services funding, like NJP, can only represent individuals, not classes of individuals). There are disability rights lawyers, some of whom have brought class actions.
Here’s an expert from a Seattle Times article of June 2021: https://www.seattletimes.com/seattle-news/education/state-orders-fixes-at-seattle-schools-after-finding-special-education-violations-during-pandemic/
“The Washington state education department is ordering Seattle Public Schools to make up for excessive delays to in-person instruction and medical care for some disabled students during the pandemic.
Under one of two orders issued earlier this month, the school district must provide a year of after-school tutoring for students who were promised in-person instruction because of their disability but faced significant delays getting it — in one case, up to 21 weeks. The state is currently reviewing the cases of 329 kids to determine who may qualify.
Another order requires the district to meet individually with families of 11 medically fragile students the district declined to compensate for nursing care, and discuss whether reimbursement is necessary.”
There’s another ongoing investigation, according to the article:
“This spring, the school district rescheduled an earlier school reopening date for special education students three times. In January, the U.S. Department of Education launched a probe into concerns that the district told teachers not to provide instruction tailored to student needs at the outset of the pandemic.”
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