When my youngest son was in the NICU after being born prematurely, my husband’s family flew from Florida to cold and snowy Pennsylvania to meet him. When his paternal aunt held him for the first time, she looked me dead in the face and asked whether I was going to be able to take care of him with my disability.
I want to be fair to her, because she was not being cruel. It was an honest question, asked from somewhere between concern and curiosity, and on almost any other day I could have answered it evenly. But I was postpartum, healing from my own medical complications, running on no sleep, and dreading having to return home to watch my son over a video monitor instead of in his crib next to me. It did not land like a question. It was a sucker punch, straight to the gut and straight to whatever was left of my sense of my own worth.
What has stayed with me is not that anyone meant harm, because nobody did. It is that the question got asked at all. That it was mine to answer while my baby was in an incubator.
It did not end when he came home from the hospital either. He is a toddler now, and when the two of us are out in public with my home health aide, people routinely assume that my aide is his mother. She is also my sister, so yes, the family resemblance is obvious. I understand how the assumption forms. But I do not think it is really about faces. Nobody studies the two of us and reasons out which one is more likely to have given birth to him.
They notice which one of us is standing up.
Most disabled parents I know have their own version of both of those. The stranger who asks who really takes care of the kids. The nurse who talks to your spouse instead of you. The point at which a well-meaning professional quietly shifts from helping you to evaluating you.
You learn to manage it. You get good at the paperwork, the polite corrections, the being twice as prepared as anyone else in the room. What you cannot manage by yourself is whether anybody is keeping track. Whether there is evidence somewhere proving that parents like us raise fine, happy children, and that the obstacles sit in the systems rather than in our bodies.
For ten years, there has been a place doing exactly that. In about a month, unless something changes, there will not be.
What Is Actually Happening
The National Research Center for Parents with Disabilities at Brandeis University is the only federally funded body in the country dedicated to the rights, health, and well-being of disabled parents and their families. It runs on a competitive grant from the National Institute on Disability, Independent Living, and Rehabilitation Research, an agency housed inside the Department of Health and Human Services. Organizations compete for that grant every five years, and the Center has won it twice.
This year, there was nothing to compete for. As Forbes reported on July 30, the forecasted funding opportunity was pulled from the federal grants database before applications ever opened. No cancellation announcement. No stated reason. A listing that simply stopped being there.
The Center’s current funding runs out on August 31, 2026.
Here is the part that I keep turning over. The money has not disappeared. Congress still funds the agency, and has repeatedly declined to shut down the office that houses it. Other grant competitions in the same portfolio are open right now, taking applications on schedule. HHS has not publicly explained why this particular opportunity vanished. Reporting indicates it is one of dozens withdrawn in recent weeks.
So nobody voted to end this. Nobody defended ending it. It is ending because a line came off a list.
Why This Is Not an Abstract Policy Problem
There are roughly 4.4 million parents in the United States living with a disability. We are one of the least researched groups in the country, and simultaneously one of the most likely to encounter the systems that can take a child away.
I want to be very clear about this next part, because when I first learned it I assumed I had misread it.
In many states, disability by itself can serve as legal grounds for terminating parental rights. Not neglect. Not abuse. Not any finding that a child came to harm. Disability. According to the Center’s research, courts have severed the relationship between parent and child even where the child was well supported, and there was no evidence of mistreatment at all.
That is the legal ground we parent on. And the organization documenting it, mapping it state by state, and giving attorneys the evidence to fight it is about to run out of money.
What Disappears With It
It would be easy to picture a research center as a group of academics producing papers nobody outside a university reads. That is not what this is. Almost everything the Center built is something a parent, or a parent’s lawyer, actually picks up and uses.
- A national data dashboard showing who disabled parents are, at both the national and state level. It is where journalists, advocates,s and policymakers get their numbers.
- Two legal maps. One documents which states allow parental disability to be grounds for termination of parental rights. The other tracks legislation introduced to protect disabled parents in custody, visitation, adoption and foster care cases. If you have ever wondered where your state stands, that map is the answer.
- A Know Your Rights toolkit for disabled parents, plus plain-language legal guidance written for attorneys, courts, child welfare agencies, and health care providers. Materials are produced in Spanish and in plain language, and the videos carry captions and ASL interpretation.
- Working interventions, not just documentation. A virtual peer support program built for Deaf parents. A training program helping behavioral health practitioners talk about parenting with adults who have psychiatric disabilities. Apeer-ledd model that starts from what disabled parents want for their families rather than from what somebody assumes they cannot do.
The Center also functions as a switchboard. Parents call to find out what their rights are. Attorneys call for evidence. Providers call for training. That phone line, and the people who answer it, are part of what closes.
Five Years Is Not a Pause
Maybe the plan is to revisit this in the next funding cycle. I understand why that sounds reasonable. It is not, and the reason is worth understanding.
Five years of evidence would simply never exist. You cannot go back later and study a period you did not study while it was happening, and this is not a quiet stretch for disability rights, child welfare, health coverage, housing, or public benefits. Studies underway now would stop partway through. Research teams would scatter into other jobs. In a field this small, losing five years costs considerably more than five years.
The tools would rot quietly. The dashboard needs new data to stay accurate. The termination of parental rights map needs revising as state laws change. The legislative tracker needs somebody actually tracking legislation. All of it would sit online looking authoritative, with nobody funded to check whether it is still true. That is arguably worse than the pages going dark, because a parent could reasonably rely on it.
And the relationships would go. A multi-university research collaboration, an advisory board made up of disabled parents, community partnerships, an international research consortium. None of that reassembles because a grant reopens in 2031.
A staff member told Forbes she fears “the absence of research will be mistaken for the absence of harm.” That is the whole thing in eleven words. When nobody is counting, discrimination does not stop. It just stops being provable.
What You Can Do in the Next Few Weeks
The Center is not asking to be handed anything. It is asking the federal government to publish the funding opportunity and let organizations compete for it, the way it has worked since the early 1990s. That is a narrow request, and there is still time.
Contact your representatives.
Both your House member and your senators. You can find them through congress.gov. Ask specifically that the NIDILRR funding opportunity for the National Research Center for Parents with Disabilities be restored and issued before August 31. Specificity matters here far more than volume. A staffer who hears a grant named is more useful to you than a hundred general messages about disability funding.
Save the resources now, while they are current.
This one is practical rather than political. Download the legal maps for your state, the Know Your Rights toolkit, and anything else that applies to your family. If those pages stop being maintained, a copy you saved in July 2026 is a copy you know was accurate in July 2026.
Tell other disabled parents.
Most of us have no idea this Center exists, which is part of how something like this passes unnoticed. If you are in a parenting group, a disability community, a support thread, say something.
Send the legal guidance
If you have a caseworker, a lawyer, or a provider in your life, send them the information. Those materials exist to change how professionals treat us, and they only work if the professionals see them.
Why It’s Important
Disabled people are constantly handed advice built on assumptions nobody bothered to check, and the fix is always the same. Somebody has to do the work of finding out what is actually true, and then say it out loud where the rest of us can find it. That is what this Center has been doing for disabled parents for a decade. I have raised my boys from a powerchair. The research saying that is normal, unremarkable, and worth protecting did not write itself, and if it goes away, the assumptions are what is left standing.
If you are parenting from a chair, you already know how much of this work happens without anyone noticing. That includes the work being done on your behalf. It is worth about ten minutes of your afternoon to keep it.
