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.