I have been writing about the politics and policies around disability in the United States for almost 20 years. My wife is the board chair for a Minnesota disability nonprofit organization. So when it comes to disability policy, I usually feel like I know what’s going on — in the abstract, that is.
And yet, when it comes to my son, a disabled adult, I often feel at sea. I never really know what he should apply for, what the process will be like or whether he’s likely to get the support he needs without a fight. And here’s the bigger problem: You’re not supposed to know what you or your loved ones qualify for. Otherwise, you might get what you are actually owed.
Complicated administrative systems, by their very complexity, do the work of shrinking social programs and promoting an anti-safety-net agenda.
On Tuesday, ProPublica revealed that the Trump White House is about to make this terrible system even worse, “according to four federal officials, internal emails and a federal regulatory listing.” More specifically, the administration is trying to shrink supplementary security income payments by changing two rules that benefit disabled adults who live with their families. My son lives with his family, i.e. me, my wife and his brother, and despite all the qualifications we bring to table, I really can’t say what these changes would mean for us. But I can say this: The confusion is a feature, not a bug.
Nico, my son, is autistic and has Down syndrome. He’s “functionally non-verbal,” which means that although he talks all the time, he does not communicate in a way that lends itself to truly independent living or working. He has considerable agency in his life, but he is vulnerable and always needs a responsible adult nearby. Not so long ago, government support for him likely would have required placing him in a large residential facility. But recent decades have brought landmark disability civil rights laws, regulations and court decisions. We entered an era where, for a minute, there was a pretty broad bipartisan consensus around providing resources to adults like Nico that allowed them to choose where to live, who to live with and find the support they needed.
But to Republicans today, that seems intolerable.
Here’s what the administration is proposing (or at least what I think it is proposing): First, the value of disabled people’s bedrooms will now be deducted from the monthly payments under SSI. So if I let my son live in his bedroom for free, that will now be considered an asset that reduces his SSI payment. It’s possible that I can charge him rent to avoid this, but the whole goal of SSI (for me) is to give him a small steady income that lets him be independent. And to figure it out how to comply with this change, I can hire a lawyer, but most people don’t have those means. It’s not the first time some new disability services rule was designed to most impact people who can’t afford lawyers.
The second rule involves SNAP. Basically, if your family went through the process of qualifying for food assistance, then the federal government would also assume your family could not provide meaningful support to a disabled adult, thus ensuring they received the full possible SSI payment. The Trump administration is proposing changing this, making it harder for a household to qualify for aid, in the name of what the program listing calls “program integrity.” (A spokesperson for the Office of Management and Budget told ProPublica that its report was “false because it speculates about policies that have not yet been decided.”)
All of this falls under the rubric of what scholars Pamela Herd and Donald Moynihan long ago coined as “administrative burdens.” Complicated administrative systems, by their very complexity, do the work of shrinking social programs and promoting an anti-safety-net agenda, while avoiding the politically unpopular route of telling Americans that their benefits are being cut.
I should be able to reliably predict what my son’s financial, medical, housing, educational, employment and social opportunities will look like in the next phase of our lives.
At times, Democrats have created administrative burdens out of a misguided sense of fairness (such as means-tested benefits). But what’s coming from Republicans right now is much more cynical — cut programs in the name of “integrity.” By this, the administration means the change is being done to protect against unspecified fraud — a favorite tactic of this White House. It’s possible the administration will reverse course now that this proposal has been noticed, just as happened last fall with planned changes for aging workers’ disability benefits. But the confusion has already been sown, leaving families such as mine scrambling to figure out what’s actually happening.
We applied for SSI for our son about a year ago, not long after he turned 18. As chance would have it, the day I started drafting this essay, we got a call from the Minnesota Department of Human Services. The department said a decision had been reached and we would be contacted soon. I don’t know what that decision was. I do know that I should be able to reliably predict what my son’s financial, medical, housing, educational, employment and social opportunities will look like in the next phase of our lives. I want to be able to plan. Instead, I just wait for the next bad news to come from the White House.
David M. Perry
David M. Perry is a journalist and historian and the co-author of "Oathbreakers:The War of Brothers That Shattered an Empire and Made Medieval Europe." His newsletter is Modern Medieval. Follow him on Threads.