Last week, Elon Musk, our shadow president, revealed the development of a new task force entitled, the Department of Government Efficiency (DOGE). It would be easier to take this task force seriously if it didn’t sound like an anti-muggle department in Harry Potter’s Ministry of Magic with Delores Umbridge at the helm. But I'm going to take it seriously for the sake of this article, because it’s a real thing that could have a large impact on all of our lives.
As a parent of a young adult with various disabilities and a disability advocate, I was forced to become an expert on the workings of Washington. Disability services keep folks like my autistic son off the streets. Nobody wants those services eliminated. However, if Musk can streamline the cumbersome system, I think every autism mom in the country would worship him.
DOGE could either hurt or help my life, depending on how it’s done.
The Maze and Inequities
Two weeks ago, I gave a one-hour webinar to teach parents how to get through the totally bonkers system of disability support in our country. If you are suffering from insomnia, you can check it out here.
It takes one hour to learn how to fill out paperwork? What?
Actually, that one-hour tutorial was the brief version of the process. I didn’t include all the advanced info like what happens if the parents are over 65 and what happens if a student has a 529 in their name. I just gave them the basic version of matters.
The process covers multiple federal and state bureaucracy, has redundant forms, and can take three years to complete. Even with a PhD, I never really understood what I was doing as I was going through the system. I bumbled my way through until I miraculously finished. Most families drop out or are rejected because they didn’t fill out the paperwork correctly.
The first step is to apply for Supplemental Security Income (SSI), which is administered by Social Security. That takes a year. If you’re approved, then your child will get $650 per month, and you’re automatically enrolled in Medicaid. Medicaid sends a block grant down to the state to distribute more money. Families have to go through another year or two application process to get those funds.
But wait! There’s more! We get funding for anything employment related through the Vocational Rehabilitation Department at the state level, which gets its money from a block grant at the Department of Labor. Because my son has a medical disability, we get another check from a branch of the state’s Health and Human Resources Department. Down the line, there’s support from another agency for housing and another one for food stamps.
Parents collect various parcels of support from multiple government entities, rather than getting it all from one disability department. There’s no one-stop shopping. The lack of road signs adds to the complication. Parents have no guidance as they collect these benefits, no one to tell them what to do next.
Even the most networked, savvy parent takes years to complete all this paperwork. Every government department demands their own paperwork. In duplicate.
In addition, the system is gummed up, because there aren’t enough government workers to process the forms and interview candidates. It’s hard to track down a person to answer a question, since so many are still working from home. Offices are poorly staffed with limited hours.
It takes a very sophisticated parent to know that services are available, get through the onboarding process, and then maintain records to continue receiving services. The complications create a system with deeply embedded inequities.
My imaginary doppelgänger is a single mother in Newark with an autistic, epileptic son. Her kid was decimated by a subpar school system, so he can’t take college computer programming classes and has fewer options than my son. And there’s no way that she would have had the time to figure out this adult disability nonsense. Most likely, she is getting no government support at all.
The Support Itself Is Good
While the system is complicated, I am grateful that it exists. It enables my son to live a fulfilling life with a mix of school and organized social activities. Hopefully, he’ll be employed in the future and no longer need support, but I’ve set up a good safety net for him in case things don’t work out. Either way, he’ll be okay.
My friends with higher needs adult-children need more help. Their funding doesn’t fully cover their day programs. There aren’t enough residential programs for them, so families are managing full grown adults with behavioral issues that put everyone in danger.
There must be large numbers of families who are getting no help, because they didn’t understand the paperwork system to enroll for help.
It’s great that help exists. Frankly, I didn’t know that this help existed until I accidentally stumbled into the system; I’m still in the grateful phase. However, the help should be more generous to those with greater needs, and it should be distributed fairly.
What Should Be
From time to time, I get paranoid that government workers purposely created a system that was so complicated that it would keep the money out of the hands of the disabled people and keep it in the coffers for their salaries and bonuses. These obstacles are a feature, not a bug. But, of course, that’s crazy.
Bureaucracies expand. That’s just what they do. There’s no conspiracy or plots. Just mindless expansion, kind of like that fungus in The Last of Us.
Concern about the size of government isn’t just a conservative slogan. Political scientists have written about the “stickiness” of government bureaucracy, which has grown so big and complicated over time, that no president can make any big changes anymore.
We shouldn’t reject a plan for change, simply because we don’t like the messenger. If Musk has a good plan, then we should listen to it.
I would like to see a new system that didn’t cut funding to disabled people, but instead streamlined the process and made it more fair. There should be a much shorter single application process for all services— the entire enrollment should take weeks, instead of years. And one department should govern all forms of support.
Musk is unrealistic about the depth of the cuts that can happen. We need government workers to process the forms and cut the checks. Of course, we can eliminate special side projects and redundant processes. We could eliminate corruption and questionable hires. If Musk can get rid of the fluff and keep the necessary workers, I’m down with that. The bottom line must always be about serving disabled folks and their families.
Musk has announced that he is looking for high IQ people who can work 80 hours a week to help him with this job. Hey, that’s me! Hello, Mr. Musk. I’m sending my resume through a DM on X right now. Sorry about the Harry Potter joke.
I often wonder to what extent we would be better off just sending people cash. There is alot of money spent on administering various programs and they may not always perfectly fit. What if you just divided up all the money based on expected fraction of program expenditure on their situation?
I'm sure it would be imperfect. Some people would find the money wasn't enough to get the services they'd gotten before. But, as you point out, that's true now because people can't work through the system so it's not obvious it wouldn't be net better.
I'd have a lot more confidence that Musk and his effort will hold disabled people (and their families) harmless if he didn't traffic in eugenics. But, I'm glad you are willing to give him, and it, a try. I'd rather be wrong about where this is all going.