Hey, Special Needs Moms, you complain too much!

Really, you do. I mean, c’mon already. Aren’t you tired of all the complaining? I am. No, really, I am.

Special needs moms, dads, caregivers, disabled people and pretty much anyone closely connected to the disability community spend an enormous amount of time complaining. And it’s exhausting. But here’s the part people outside our community often don’t understand: We don’t complain because we enjoy complaining.

We complain because, in many situations, that’s how the system is designed to work.

If a wheelchair user can’t get into a building, someone has to report it. If a student isn’t receiving what their IEP requires, someone has to raise the issue. If a person experiences disability discrimination in housing, education or air travel, someone generally has to bring that problem to the attention of the appropriate agency.

There isn’t a magical Disability Rights Fairy floating around, checking every school, apartment building, restaurant, polling place and airplane to make sure everything is accessible and everyone is following the law.

Wouldn’t that be nice?

Instead, enforcement of many disability protections depends heavily on disabled people and their families recognizing that something is wrong and then doing something about it.

In other words, complaining.

Laws That Protect People With Disabilities

There are federal and state agencies responsible for monitoring and enforcing disability laws, so it’s not accurate to say that absolutely everything is complaint-based.

But when an individual disabled person isn’t getting what the law requires, that person or their family often has to initiate the process that gets the problem addressed.

And that means learning which law applies, documenting what happened, figuring out which agency has jurisdiction, meeting filing deadlines and then waiting for the process to play out.

You know, all that stuff you have tons of spare time for while raising a disabled child.

Let’s take a look.

IDEA

Of course you’ve heard of IDEA, the federal law that provides eligible children with disabilities with a free appropriate public education.

IDEA does have federal and state monitoring requirements. States are required to monitor school districts, and federal monitoring is supposed to focus not only on compliance but also on educational results and functional outcomes for children with disabilities.

But that doesn’t mean someone is sitting in your child’s classroom making sure every service, accommodation, goal and support in their IEP is actually happening.

When parents believe their child’s IDEA rights have been violated, the law provides dispute-resolution options, including state complaints, mediation and due process.

Which means parents still have to recognize that something is wrong and take action. That’s why I’ve said for years that parents are the IEP police.

If the IEP says something should happen and it isn’t happening, there’s a pretty good chance you’re going to be the person who notices.

Then you have to document it, communicate it and, if necessary, use one of the complaint or dispute-resolution processes available to you. So yes, you’re “complaining.”

Because what is the alternative? Pretending your child’s IEP is being implemented when it isn’t?

ADA

Then there’s the Americans with Disabilities Act.

The ADA has dramatically changed access for disabled Americans, but having a law doesn’t mean every business, public program or building automatically complies with it.

For example, under Title III, existing public accommodations have continuing obligations to remove architectural barriers when doing so is “readily achievable.” When removing a particular barrier isn’t readily achievable, other requirements may still apply, including providing access through alternative methods when those methods are readily achievable.

And when a disabled person believes they’ve experienced discrimination under the ADA, one enforcement option is—you guessed it—filing a complaint.

Depending upon the situation, that complaint might go to the Department of Justice or another federal agency.

Again, somebody has to notice the problem first.

ADA and Section 504 in Schools

Parents also hear a lot about Section 504 and the ADA in schools.

The U.S. Department of Education’s Office for Civil Rights enforces Section 504 and Title II of the ADA in educational settings. If you believe a school has discriminated against your child because of disability, you can file a complaint with OCR.

That doesn’t mean OCR handles every disagreement about an IEP or 504 Plan. Different issues have different enforcement mechanisms, and OCR generally isn’t there to rewrite your child’s IEP because you disagree with its contents.

But disability discrimination and certain Section 504 or ADA violations can fall within OCR’s jurisdiction.

And how does OCR learn about what happened to your child?

Someone tells them….by filing a complaint.

Fair Housing Act

The Fair Housing Act prohibits housing discrimination based on disability, along with several other protected characteristics.

So let’s say your landlord refuses a disability-related accommodation or you believe your family is being treated differently because your child is disabled.

There are agencies responsible for enforcing fair housing laws. But first, someone has to tell them what happened.

HUD specifically tells people who believe their housing rights have been violated to report the discrimination, and there are filing deadlines involved.

So now, in addition to whatever housing crisis caused you to seek help in the first place, you get to learn another complaint system.

Fun times.

Air Travel

Air travel is another good example.

Disabled travelers have protections under the Air Carrier Access Act. Airlines are required to have Complaint Resolution Officials available to address disability-related problems, and travelers who believe their rights have been violated can also file disability-related complaints with the Department of Transportation.

So if your wheelchair is mishandled, you’re denied an accommodation or another disability-related problem occurs, the enforcement system again depends in part on someone reporting what happened.

Another complaint.

Voting Access

Disabled people also have federal protections designed to ensure access to voting, and inaccessible voting can be reported to the Department of Justice.

There is government enforcement here too, and sometimes agencies proactively investigate accessibility rather than waiting for an individual complaint.

But once again, reporting barriers is an important part of how violations are identified and addressed.

Think about the absurdity of that for a minute.

You encounter an accessibility barrier while trying to exercise a basic right, and then you’re the one who may have to spend additional time documenting and reporting the barrier.

And then people wonder why disabled people and their families seem so cranky.

Why Disability Parents “Complain” So Much

This is the part I wish more people understood–what sounds like complaining to someone on the outside may actually be advocacy.

• It may be documentation.
• It may be legally required notice.
• It may be the first step in an administrative process.
• It may be the only reason anyone with authority ever learns that the problem exists.

And doing this repeatedly is exhausting.

You don’t just experience the problem. You have to prove the problem.

You save emails. You take screenshots. You photograph inaccessible entrances. You keep copies of IEPs. You compare progress reports. You document missed services. You learn acronyms for agencies you never wanted to know existed. You fill out forms. You make phone calls. You follow up because nobody responded to the first email.

Then someone tells you that you’re being negative. Cool.

If it feels like you’re always complaining, there’s a reason for that.

Disabled people and their families are often placed in the position of being the people who identify failures in systems that are supposed to protect them.

There are government agencies, monitoring systems, advocacy organizations and enforcement mechanisms. We are not literally the only watchdogs.

But those systems cannot possibly see every inaccessible doorway, every missed IEP service, every discriminatory interaction or every accommodation that wasn’t provided.

Very often, somebody has to raise their hand and say, “This isn’t happening the way it’s supposed to.”

And very often, that person is us.

So Yes, We Complain

I’d love to complain less.

I’d love for parents not to have to spend evenings comparing an IEP with a progress report because something doesn’t add up. I’d love for disabled people not to have to research which federal agency handles which kind of discrimination before they can even ask for help.

I’d love for accessibility and disability rights to be built into systems so thoroughly that enforcement becomes the exception rather than another task dumped onto the person who encountered the barrier.

Until then, yes, we’re going to complain.

Maybe the better question isn’t why disabled people and their families complain so much.

Maybe it’s why they have so much to complain about.