Ready, Willing and Disabled: On Being Determined To Work

By Kathleen Downes

Photo of Kathleen Downes

Photo of Kathleen Downes

I am twenty two years old. In a few months, I will graduate with honors from the University of Illinois at Urbana-Champaign. I want to be a social worker and a disability activist. By every official measure, I have successfully transitioned into that shadowy place with a notorious lack of information- adulthood with a disability. “Disabled adult”- it’s a title that attracts little public concern in a maze of government programs designed as though we never grow up. Twenty two is a pretty standard age to “grow out” of many disability services as though the supports and funding will no longer be necessary with the dawn of adulthood. “Silly rabbit, Medicaid waivers are for kids!” Oh. Is that not how the phrase goes? I totally meant to say Trix. Anyway, now that we have established that disabled people do not live in Neverland, let’s talk about a grown up thing that remains a big scary frontier, even more so than realizing that Mom can’t always be there to tell you what is microwave safe…. That scary frontier is employment.

Many are quick to judge, and think that finding work with a disability is a mere matter of effort. Oh, if only. The way our Social Security system is set up creates huge barriers to our inclusion in the workforce. As some of you may know, Medicaid is the only health insurance program that will fund certain essential disability related items and services such as consumer directed personal care assistance. Furthermore, private insurance often offers insufficient durable medical equipment coverage, making it difficult to afford power wheelchairs. Policies with limited durable medical equipment coverage may only give a small fraction of the money required to buy a properly fitted chair with needed features, while the rest must be funded by private pay or medical savings accounts. Thus, many of us rely on Medicaid for sufficient coverage of equipment we can’t live without… things we need to survive, but are treated as luxury items by the healthcare system.

In order to qualify for Medicaid, the rules require recipients to remain in poverty just to get the services they need. Too much income, and you kiss those services goodbye. It is not as simple as getting a job and using what you earn to fund those services yourself. Personal care assistance, which enables me to do basic things like bathe, dress, use the bathroom, and prepare meals, costs $30,000 to $40,000 a year, possibly more. That doesn’t even account for the price of a power wheelchair. They can cost up to $60,000 with all the bells and whistles. Obviously, these expenses represent most, if not all of the average person’s annual salary, frequently making private funding of the services we need to live impossible. In order to remain eligible for Medicaid, the resource limit is $2000. Yes. You read that correctly. Two. Not twelve. Not twenty. Two.

Recently, the ABLE Act passed. This was encouraging, because it allows for the creation of special accounts for disability related expenses. ABLE accounts allow for some savings that will not affect benefit eligibility. However, there are limits to what types of expenses qualify. What’s more is the ABLE Act only presents a solution for people disabled before the age of 26, and more importantly, only for people who have money to save in the first place. A meaningful change in policy will require the contributions of anyone and everyone with an interest in justice. Our work begins with getting the word out through platforms like CareerACCESS, where our voices and talents are valued.

I will always continue to work hard, to love life and to make jokes about how the government will buy me a shiny new wheelchair, but only allow me enough money to buy lollipops and an accessible cardboard box. These ridiculous policies will not steal my joy. But sometimes in my quiet moments, as I see my able-bodied peers getting jobs and complaining about having too many interviews instead of too few, it is hard not to grow disillusioned. When people make those comments, they don’t mean to be ignorant, but still they are overlooking the fact that they have been granted the dignity of work while so many others have to sit on the sidelines to protect their basic care. No matter what the job is, they have a chance to contribute and be rewarded for it. The denial of the same opportunity for people with disabilities is a moral and economic outrage. Enough is enough.

Many people like Kathleen face challenges because of current Social Security disability benefits policies.  You can help Kathleen and other young adults in similar situations by signing our CareerACCESS petition to reform current federal policies to allow young adults with disabilities to pursue their career goals and achieve independence. You can also follow CareerACCESS on Facebook and Twitter and share our updates and posts. 

For more about Kathleen Downes, visit her blog: The Squeaky Wheelchair

DISCLAIMER: Readers are invited to add their views and experiences to the entries we post. The blogs we post are not edited; they are the candid and courageous views of real life experiences of young adults with disabilities. Sometimes the blogs we post may not describe current SSI or Social Security rules accurately, but it's important to share how people actually try to navigate these complex and complicated systems.

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