Insurance & Disability: What’s Covered, What’s Not, and What You Can Do About It

If you're parenting a child with a disability, it doesn’t take long to realize that the healthcare system wasn't exactly built with our families in mind. From the moment you're handed a diagnosis, you enter a confusing world of paperwork, waiting lists, denials, appeals, and hours on the phone just trying to understand what your insurance does (or more often, doesn’t) cover.

So let’s break it down: public vs. private insurance, what’s usually covered, what’s often not, and what you can do to advocate for the services your child needs.

What Insurance Usually Covers

Whether you're on a private plan through an employer or using a public option like Medicaid, there are certain “medically necessary” services most plans will include:

• Doctor visits

• Hospital stays and surgeries

• Basic prescriptions

• Emergency care

• Some therapies (speech, OT, PT—more on that below)

If your child has a formal diagnosis and your provider uses the right codes, you might get a portion of these services covered. But even when the service itself is “included,” there’s often a maze of conditions, restrictions, and fine print around how much, how often, and in what setting.

What Insurance Often Doesn’t Cover (But Should)

This is where things get frustrating—and frankly, disheartening. Many of the things that make a major difference for children with disabilities aren’t seen as “medically necessary” by insurers, even when your child’s entire care team agrees they are essential.

Here are some common examples of what’s often not covered:

• Adaptive equipment (specialized strollers, walkers, wheelchairs, or adaptive bikes)

• AAC devices (communication devices), especially without extensive documentation and trial periods

• Feeding therapy (if it’s not related to weight gain or aspiration risk)

• Intensive therapies (like multi-week intensive PT, OT, or speech programs)

• Home or vehicle modifications (ramps, lifts, bathroom renovations)

• Out-of-network specialists when your local area lacks what your child needs

Even when something is technically covered, it might come with arbitrary limits—like 30 therapy sessions a year for a child who needs therapy three times a week—or be restricted to certain settings (like a hospital only, rather than a private clinic or home).

Private Insurance vs. Medicaid / Public Programs

Each type of insurance has pros and cons, and many families end up navigating both at once.

Private Insurance (through an employer or the marketplace)

• Often has more restrictive definitions of “medical necessity”

• Higher deductibles, co-pays, and out-of-pocket maximums

• May deny therapies, equipment, or alternative care settings

• Denials are common, but some employers can make exceptions

Medicaid (state-based, SSI-based, or waiver programs)

• Typically offers broader coverage for children with disabilities

• Often covers services private insurance will not

• Can serve as a secondary insurance for families with private plans

• Access may depend on income, disability level, or long waiver waitlists

Many states offer Medicaid waivers or programs that allow families to qualify based on their child’s medical needs—not just family income. These programs can be game-changers, but the application process is lengthy and the waitlists are often years long.

What You Can Do

Even though the system is flawed, there are ways to advocate for your child’s needs and work within (or around) insurance limits. Here are some practical steps:

• Get everything in writing. Therapists, doctors, and specialists can help you build a paper trail that justifies why a service or device is medically necessary. The stronger the documentation, the better your odds.

• Review your Explanation of Benefits (EOBs). Don’t just glance and toss. EOBs can reveal billing errors, incorrect coding, or denials that are appealable. Understanding what was paid, what was denied, and why is essential.

• Learn the language. Familiarize yourself with the CPT codes (Current Procedural Terminology) used for the services your child receives. Sometimes, the difference between a denial and approval is just a billing code. Ask your providers which codes they’re using and whether alternatives exist.

• Push back on denials. Don’t be afraid to question your insurance company. A denial isn’t the end of the road—it’s often just the beginning of the process. Call and ask why something was denied, whether there are alternate CPT codes or different documentation your provider can use, or if there’s a covered service the claim could be refiled under.

And here’s something that’s becoming increasingly important: many insurance companies are now using AI systems to review and deny claims automatically. That means some decisions are being made without a human ever reviewing your child’s specific situation. These systems are fast but they’re not always accurate or fair. Appealing and requesting a manual review is more important than ever.

Also, remember: insurance companies make mistakes. A lot of them. They may misprocess claims, incorrectly apply deductibles, or deny something based on outdated rules. If you don’t notice it, it likely won’t get fixed. They’re not going to go back and correct it on their own. That's why reviewing your Explanation of Benefits and keeping a paper trail matters so much. You're your child’s best advocate—and often the only one reading the fine print.

• If you have private insurance, connect with your employer. Talk to your HR department or benefits manager. Some employers can advocate on your behalf or even make case-by-case exceptions for services not technically covered under the contract. This is especially worth trying for one-time or high-need items like equipment or intensive therapy.

• Ask about secondary coverage. Even if you have private insurance, your child may qualify for Medicaid as a secondary insurer, which can pick up co-pays or cover services your primary doesn’t.

• Appeal. Appeal. Appeal. A denial doesn’t always mean “no forever.” Many services get approved after multiple appeals, especially when you have the right documentation and support from your child’s care team.

• Talk to other parents. This is honestly where the gold is. Local and online communities are full of practical tips, provider recommendations, and real-life workarounds. We’ve all learned things the hard way and sharing that knowledge makes the road a little easier for the next family.

Personally, I’ve spent countless hours on the phone with insurance companies. I’ve had denials overturned, equipment approved, and therapies covered, not because it was easy, but because I was relentless. I asked questions, filed appeals, looped in providers, called again, and refused to give up. If you’re in the thick of it and need someone to talk through strategy or just vent to—I’m more than happy to connect. No one should have to navigate this alone.

• Know your state laws. Some states require insurers to cover specific autism therapies, habilitative services, or pediatric therapies. Learn what your rights are because insurance companies won’t volunteer that information.

Final Thoughts

Insurance—public or private—is rarely enough on its own. Most families end up paying out of pocket for services their child needs to survive, communicate, and thrive. Others go without because the system makes access nearly impossible. That’s not okay but it’s also not your fault.

If you're exhausted by the denials, buried in paperwork, and feeling like you need a law degree just to get a gait trainer or feeding therapy approved you are not alone. This system is broken. But there are ways to push back, advocate smarter, and find support.

You shouldn’t have to choose between your child’s progress and your family’s financial security. And you definitely shouldn’t have to carry this alone.

Keep fighting but also…take breaks. Rest when you need to. Let people help you. And know that you’re doing more than enough.