The Disability Tax No One Talks About

By Giselle Ramirez

Public Advocate, Citywide Council for District 75

There’s a cost to raising children with disabilities that never shows up on receipts, budgets,or tax forms—but parents know it well. I call it the disability tax.

The disability tax is the extra money, time, emotional energy, and mental load families pay simply because our children don’t fit neatly into systems built for “typical” kids.

Let’s start with something simple: shoes.

For many families, buying shoes is a quick seasonal errand. For us, it’s a months-longprocess of trial, error, and stress. My children can tolerate only one specific brand, one exact model, one particular texture, or sole. When I finally find a pair that works, I don’t buy just one—I buy multiples, because I know it won’t last. Styles get discontinued. Materials

change. Sensory-friendly options disappear without warning.

That means hours of searching, limited choices, and spending more money to keep things consistent. And when that shoe disappears, the cost isn’t just financial. It shows up as discomfort, meltdowns, dysregulation, missed school days, and very little sleep for anyone.

Clothes are the same story. Tags, seams, waistbands, fabrics. When something works, you rebuy it again and again—often at a higher price—until it no longer exists. And honestly, shoes and clothes are the easy part. Extracurricular activities are where the disability tax becomes impossible to ignore. Sports,

arts, camps, clubs—so many of these spaces aren’t accessible, aren’t trained, or aren’t willing to accommodate kids with higher needs. Families are usually left with three choices:

pay more for a specialized program, pay privately for one-to-one support so their child can

participate, or opt out entirely. Inclusion, when it exists, often comes with an invoice.

This isn’t just a personal experience. Research backs it up. Families raising children with disabilities spend about $10,000 more per year than families raising typically developing children. At the same time, about 17 percent of these families report that a parent has left a job, reduced work hours, or taken unpaid leave due to caregiving demands—resulting in an average of $18,000 in lost income each year.

That’s not a lifestyle choice. That’s a system that isn’t built to support families.

In New York, where the cost of living is already high, the impact is even heavier. Housing modifications, transportation, therapies, adaptive equipment, and specialized services add up quickly. And even when services are technically “covered,” families still pay in copays, deductibles, long waitlists, unpaid time off work, and the constant labor of advocating just

to make things happen.

What makes the disability tax so hard to see is that it’s cumulative. It’s not one big bill. It’s a

• Paying more for fewer options

• Spending hours researching instead of resting

• Buying backups because consistency isn’t a preference—it’s survival

• Losing income while expenses increase

• Paying privately because public systems are underfunded or inaccessible

And somehow, families are still expected to be grateful. Grateful for minimal accommodations. Grateful for partial access. Grateful for systems that require parents to become case managers, advocates, and full-time problem solvers just to secure basic dignity for their children.

We talk a lot about equity, but equity means naming the disability tax and actually doing something about it—through policy, funding, tax credits, accessible design, and inclusive programs that reflect real life, not averages.

Until then, families will keep paying. Not because we can afford it—but because our children deserve comfort, participation, and joy.

And that should never be considered a luxury.