The Hidden Cost of Disability: When Disabled People Can't Afford to Get Promoted

Living with a disability is expensive.

We want to work. We want to make meaningful contributions to society. We want to actually afford to live.

To achieve that, we need sustainable careers that pay the bills and then some. We face numerous disability-related out-of-pocket expenses on top of everyday costs. Mobility equipment and accessibility tools aren’t just handed to us, we have to earn them and sometimes even pay extra for them. We need employment that pays fairly so we can not just survive, but move forward.

Many assume people living with disabilities are simply “taken care of” by government programs or healthcare systems—that is simply not true.

Millions of individuals living with disabilities rely on public benefits for income, health care, food, and housing—systems that come with serious strings attached. These programs often restrict how much we can earn, save, or even own, creating an impossible financial roadmap that forces us to choose between independence and survival.

Paying out of pocket for personal care, medical supplies, or mobility equipment is incredibly expensive. For most, it’s not sustainable. So we remain bound to these restrictive systems out of necessity—a matter of life and death. This is our reality.

Medicaid/Medicare offers many waivers for assistance, such as the Home and Community-Based Services (HCBS) program, which helps cover the cost of personal care attendants (PCAs) to assist with activities of daily living (ADL’s). These services allow for Medicaid beneficiaries to receive services in their own homes or communities rather than institutions or other isolated settings.

PCAs are essential and a lifeline. It’s how many disabled individuals literally get out of bed each morning, with the assistance provided by caregivers covered through HCBS waivers. To be a candidate for these waivers, you must qualify for Medicaid.

That qualification comes with strict income and asset limits. Earning too much, saving too much, or marrying can cause you to lose benefits entirely. For many, it’s a cruel choice between the personal care they need to live and the income they need to thrive. It’s a near-impossible balance—one that keeps far too many trapped in “disabled poverty” that they’ll never escape. 

It’s an impending doom that lingers once one realizes just how serious earning wages actually means for their prospective outlooks. It causes many to distance themselves or withhold from the job force altogether simply because of these ramifications. Understanding these terms and blockades is difficult for the average person to navigate, so out of fear, many disabled people decline work completely.

These so-called supports come with severely outdated rules that punish financial freedom and career betterment. We get penalized for making too much money, for saving, or for legally marrying a partner. Yes, this is still the case right now.

Attempts to enact real change to these outdated policies exist, yet we’re still waiting for real progress.

Bills and initiatives have blossomed out of this need for a better, less controlled, repressed outcome for our disabled population. Sadly, we’re just not there yet.

The SSI Savings Penalty Elimination Act, a bipartisan bill introduced and reintroduced for years, would significantly raise the outdated asset limits for those on Supplemental Security Income (SSI). Currently, individuals can have no more than $2,000 in assets or $3,000 for married couples. The bill would increase those limits to $10,000 and $20,000, respectively, and finally adjust them for inflation.

Those original asset thresholds haven’t been adjusted since the 1980s. We’re still living under financial rules and archaic policies crafted nearly 40 years ago.

Marriage adds another layer of inequity. When someone on SSI marries their partner, their benefits are reduced—love literally costs them income. Instead of being rewarded for building a life together, couples are stripped of resources simply because they’re married. This encourages a couple to exclude themselves from the traditional cultural ritual of marriage all because a silly piece of paper now says that, together, they are actually not worth more.

The Eliminating the Marriage Penalty in SSI Act (EMPSA), another bipartisan effort, aims to ensure individuals living with disabilities aren’t penalized for marrying. But like many disability-related bills, it hasn’t yet passed. We are still stuck choosing between love and financial security. 

There are a few workarounds and avenues of savings that can potentially help, but they still come with limitations and caveats. ABLE (Achieving a Better Life Experience) accounts allow the disability community to save and invest for disability-related expenses without losing eligibility for Medicaid or SSI. Funds can be used for housing, education, transportation, or healthcare. The disability onset age limit expands from 26 to 46 starting in 2026—a positive change.

But even ABLE accounts come with limits and fees. They’re still exclusionary for some, and costs—even if small—add up. It’s yet another line on the “disabled tax” receipt we pay just to get by. Just because we have to.

So, what do we do?

We take pay cuts. We pass up advancement opportunities. We watch others climb above us, just so we can exist.

Yes, we might get a seat at the table thanks to the push for more accessible workplaces, but there’s still an overwhelming shadow hovering over every choice we have to contemplate. Accepting a promotion and elevating up the corporate ladder could mean losing the support we rely on to survive.

Is that really what a flourishing occupation and fulfilling life looks like? Just getting by?

The disability community wants the same opportunities as anyone else—a raise, promotion, and the chance to succeed in those coveted positions. We are capable. We have talents to showcase, drive, and perspectives that strengthen the workplace, just like everybody else. So let us.

Is it really an equal workforce if we’re offered a position, wholeheartedly knowing we’ll have to turn it down just to keep our basic supports intact? Saying “yes” to such an opportunity could mean a disabled individual comes home at night without the care they need to live.

Antiquated policies are failing to keep up with today’s times and will forever hinder us from reaching achievable career goals. They rob us of joy, professional freedom, and the chance to thrive.

Until these policies truly change, the disability community will remain excluded from the top-tier seats we’ve earned. Our future—cluttered with barriers and bureaucratic limits—deserves better.

After all, we’ve been creating our own seats for years. It’s time policy made room for us at the table.