What's Really Keeping People With Disabilities Unemployed

October is Disability Employment Awareness Month, a time when we talk about job discrimination, show employers how much people with disabilities can contribute to a company and promote self-employment and entrepreneurship in the disability community. There’s no reason you shouldn’t hire a person with a disability. We make great employees. Statistics show we’re dedicated and reliable. Many of us think outside the box because we live outside the box.

However, there is a major reason why many people with disabilities don’t work even though we want to, or we intentionally limit our work hours and income. Most articles about disability and employment don’t talk about this issue; it moves away from safe, feel-good “inclusion” territory and into the shark-infested waters of politics. But if we don’t talk about it, we’re ignoring what is arguably the biggest factor trapping Americans with disabilities in a vicious cycle of poverty and unemployment: The broken disability benefits system.

As a person with a disability who wheels a fine line to work without losing benefits, I know from experience that dealing with government programs is a job in and of itself. I have to work hard just to work hard, while also coping with the physical difficulties my cerebral palsy throws my way and trying to live a full life. It’s worth it, but I’m reminded every day of how the system fails me and makes it impossible for far too many others to succeed.

How Disability Benefits Trap People in Poverty

Here’s a bit of background for people outside the U.S., as well as the majority of Americans who have not had to endure the nightmare of applying for disability benefits. The U.S. has two different disability programs: SSI and SSDI. SSDI recipients can qualify for Medicare; SSI recipients do not. In addition to federal Social Security benefits, many people with disabilities rely on Medicaid because they either can’t get health insurance any other way or their other insurance doesn’t cover the services they need. For example, Medicare and private insurance don’t cover home and community-based services such as the personal care attendants people like me need to get out of bed, dress and bathe. Without Medicaid, my home care would cost over $4,000 per month. I have no choice but to stay within the income and resource limits of these programs.

To receive Social Security, Medicare and Medicaid, you can’t have and/or make much money, so if you need them, you are trapped in poverty. SSDI doesn’t consider personal assets or non-work income, but to keep SSI and Medicaid, you have to meet certain income and resource limitations, one of which is having under $2000 in assets or $3000 for a couple. Your house and one car are exempt, but almost everything else counts — bank accounts, retirement funds, etc. Your spouse’s income counts against yours, and it’s considered “unearned income,” which can’t be deducted under work incentive programs. So if you have a disability and depend on SSI and/or Medicaid to survive, you can’t get married. Many couples have no choice but to get divorced so a seriously ill spouse can qualify for Medicaid. It’s a cruel, heartless system and we feed it every time we falsely accuse people of faking or playing up their symptoms to get money from the government. The so-called “free money” comes at a price no one would want to pay if they had any other choice.

It usually takes a year or more to get on disability benefits, and many applicants are rejected. If your disability isn’t visible or well-understood, you’ll likely have to endure a grueling appeals process and go before a judge. To qualify, you must claim and prove you are unable to work at any job. This is often a massive barrier for people with adult-onset disabilities who have done manual labor and aren’t trained for anything else, or people who have invisible conditions that cause fatigue and pain and have to prove they can’t even work a desk job. It’s also contradictory because once you receive benefits, you can work, albeit under a complex system of incentives, limitations and restrictions.

You Can Work and Receive Benefits, But…

Over the years, new government programs have tried to create pathways for people with disabilities to return to the workforce. Laws have been passed like the Ticket to Work program, which gives people on Social Security a trial work period where they can be employed for several months without losing benefits and deduct disability expenses from their countable income. Other changes include allowing SSDI recipients to keep Medicare benefits; “working disabled” Medicaid programs, which allow for a higher income while keeping Medicaid, and ABLE accounts, a special bank account that allows people who became disabled before the age of 26 to save money above SSI and Medicaid’s $2,000 resource limit to use for living and disability-related expenses. Some of these programs are federal, others are state-run, and others county-based with rules that vary based on where you live.

Are you confused yet? Me too! Yet this is the system millions of people with disabilities depend on to survive. And therein lies the problem. This patchwork of programs that are supposed to help people with disabilities achieve employment are confusing to navigate, and the risks of enrolling are high. If an agency doesn’t accept your documents, if a program gets changed or canceled or you make a tiny paperwork mistake, you could lose everything: rent assistance, personal care attendants, food stamps and Social Security income. Struggling to scrape by on $900 a month is miserable, but for many people, it’s less terrifying than spending sleepless nights wondering if you’ll end up on the street because you started earning $200 a month and forgot to mail in a form. It’s no wonder most people with disabilities don’t work, even if they can or want to try.

I can work because I’ve found some solutions to limit my countable income, and I have a safety net in the form of a supportive family. Getting to this point involved a combination of emotional trauma and hard work. It’s been worth it, but I can see the lines on my face getting deeper as I go through each day with worry always at the back of my mind. I dread checking my mailbox and my stomach churns every time I receive something from Social Security or Medicaid. Will this be the day it all goes wrong? Will I have to live with this fear for the rest of my working life? I encourage every person with a disability who can work to go for it, but I also know it’s so much harder than it should be.

What Disability Employment Awareness Month Articles Won’t Tell You

We can’t solve the low disability employment rate without fixing the broken Social Security benefits system. So how do we do it? Here’s my take.

1. Stop basing eligibility for disability benefits on an inability to work.

Disabilities affect each person differently and the current one-size-fits-all system actually fits almost no one. Yes, some people with disabilities are too ill to work and they should be able to live above the poverty line and without being stigmatized. But many people with even severe disabilities can work if they have access to quality medical care, personal care assistants, accessible transportation, adaptive technology and other resources. Making employment the dividing line between “disabled” and “not disabled” defies logic. Instead, disability should be determined based on a person’s medical and psychological circumstances and the services they receive tailored for those identified needs.

Some people need money for living expenses or reimbursement for out-of-pocket medical costs. Some need help with making their house and vehicle accessible, traveling to see a rare disease specialist, training to do a less strenuous job or finding a mental health treatment program. These people could be employed or they might not be. It shouldn’t matter.

2. Remove income and asset restrictions from disability programs.

The stereotype of rich or lazy people getting disability benefits so they don’t have to work is false. Such individuals are rare; the opposite circumstance is far more common. Many people who become disabled must deplete their life savings and force themselves into poverty because they can’t meet their needs any other way. Living with a disability is mind-bogglingly expensive. Only the richest people in the world, the 1 percent, could actually manage these costs on their own; working-class and middle-class families are routinely financially devastated by a permanent illness or injury.

Imagine a woman who is paralyzed, uses a ventilator and requires 24-hour personal care assistance — and is an attorney earning $100,000 per year. A non-disabled person in that situation would be well-off; you might even classify them as wealthy. But under the current disability benefits system, she would earn too much to qualify for Medicaid, even though the out-of-pocket cost of her care would almost certainly exceed her income. She would have no choice but to quit her job and subsist at the poverty line, or work part-time to hover just above it via a precarious Medicaid “working disabled” program. This is not only an insult to her as a capable, hard-working person, but it makes no sense from a financial point of view. She needs services which exceed her income regardless. Isn’t it better for her to be a productive citizen and pay some income tax rather than none at all?

In other countries such as the U.K., people with disabilities can get financial assistance with disability-related expenses as well as self-directed personal care assistance services regardless of their income and employment status. Their system isn’t perfect either, but I don’t think it’s a coincidence that half of U.K. residents with disabilities are employed, compared to just over a third of disabled Americans.

3. Medicare and Medicaid should be available to all.

The most important change I believe we could make to increase the disability employment rate is universal health care. Many people with disabilities apply for Social Security and especially Medicaid because they need health care. They have no choice but to meet income requirements and go through the intense scrutiny required to qualify for cash benefits, even if just getting health care would enable them to return to work. Wouldn’t it be better if we made Medicare and Medicaid available to anyone who needs them, whether they’re deemed “disabled” or not?

Proposals such as Medicare for All or the option to buy into Medicare would help people with disabilities whose needs are poorly served by private insurance companies. I understand why some Americans fear single-payer; they don’t want “the government” running health care and taking away their choice to use a private insurer. But it’s equally unfair that people who want to enroll in federal or state health care programs cannot make that choice without being forced into poverty and jumping through dozens of hoops.

While I support universal Medicare access, it’s important to note that our current version of Medicare falls short in terms of disability services. Medicare has inadequate coverage for mobility equipment such as prosthetics and power wheelchairs, and there’s no coverage at all for personal care attendants. However, these coverage gaps could be resolved through legislation and adding universal Medicaid eligibility. An important but little-known bill called the Disability Integration Act would require Medicaid to fully cover home and community-based services including personal care attendants for everyone who needs them. Unfortunately, this bill has repeatedly stalled in Congress.

I believe access to health care is a human right and that people with disabilities deserve a decent, stable life whether we can work or not. It’s the just and moral thing to do — and it also makes sense economically. When illness is prevented or treated at early stages, people are healthier, happier and more productive. When people with disabilities have the health care and support services we need and don’t have to constantly fear losing them, we can strive for more. We can pursue independence, education and employment, and we can succeed. This Disability Employment Awareness Month, let’s celebrate the progress we’ve made, thank employers (like The Mighty!) who welcome and respect their disabled employees, and support the people with disabilities who are working despite tremendous challenges. So often, our disabilities aren’t what limit us. It’s time we change the things that actually do.