Redefining Disability Challenge – Question 26

Each Wednesday, I post my response to a question from the Redefining Disability Challenge. This is my response to the twenty sixth question in the Challenge. As usual, I am not looking ahead to future questions, so I may inadvertently address some topics which will come up later in the Challenge. Here is this week’s question:

What barriers do you encounter in your daily life when it comes to disability?

I have tried to structure my daily life so I face very few barriers. However I live in a world designed for people who walk, people who have muscular strength, people who can climb stairs and navigate uneven surfaces, people who can reach above their head. The physical barriers are real, and they do present challenges. But, when I think of true barriers to equality what comes to mind are the financial sacrifices I must make due to my need for personal care.

Since I rely on Personal Assistants (PAs) to assist me with the tasks of daily living, I am beholden to the system which makes this assistance possible. As such, I must comply with rules which limit my financial independence and self-sufficiency. I have written about this before in Redefining Disability Challenge Question 6 which you can find hereYou should go read that post now if you haven’t already to get an idea of what I mean. I’ll wait. It’s important background information.

I am fortunate because I have been employed full time in four occupations since I finished my Master degree in 1996. I enjoy my current job and find it very rewarding. Yet, I know I could do more. I remain at my job, a position for which I am over-qualified, because it does not pay me at a level which will make me ineligible for Medicaid, the publicly funded program which pays for my personal assistants. 

Like most adults with disabilities who depend on Medicaid, I do not have an emergency fund. In order to qualify for Medicaid, I am not allowed to have more than $2000 in liquitable assets. This forces me, and others like me, to rely on credit cards or the kindness of others when emergencies occur.

Cars break down. Microwaves stop working. Wheelchairs and durable medical equipment need repairs.

Life happens. When it does, I am forced to pay for it using a credit card. This means I am paying for the emergency over an extended time and paying more than the true cost because of course I don’t have an emergency fund to pay off the card before the interest gets tacked on to the purchase. If I were allowed to have a job which compensates me for what I am worth without losing my personal care, I could develop an emergency fund and pay for these things with the fund rather than a credit card!

The assistive technology and equipment which make it possible for me and others like me to function are wonderful, but they are expensive. Modified vehicles cost two or three times more than standard vehicles, depending on the technology needed by the driver or user. Durable medical equipment purchases for things I require, such as a tub transfer bench and bedside commode, were not approved by Medicaid or my insurance. I guess because the ability to bathe and go to the bathroom were not deemed medically necessary. I pay for other necessities which I use daily such as baby wipes, the device which makes it possible for me to wipe myself after I go to the bathroom (my PAs refer to it as “toilet tongs”), disposable gloves for my PAs, and the reachers which help me independently activate the button to release my wheelchair from the van restraint system (quite possibly, the MOST important tool I own). While not expensive individually as purchases, these add up over time.

Whenever I travel, I must pay for at last two of everything so I can bring a PA with me. This doubles the cost of every trip, which is why I haven’t taken many since I began using PAs. Without the generosity of many friends, family members, multiple Rotary Clubs and strangers, I would not have fulfilled my dream of traveling to Australia in March. There was no way I could come up with the extra $3000 required for another person to travel with me, because I am not allowed to have a savings to make these opportunities possible and I cannot accept a job which pays me thousands of dollars more than I currently make.

I use these real world examples to show the reality of what it is like to live “in the system” as a woman with a mobility impairment, not because I am looking for financial assistance. I am NOT looking for a hand out. I work within the system to the best of my abilities. I live simply. I budget. I follow the rules. I pay my bills and I am not lacking for anything I require.

But I am not financially secure. And neither are millions of other people like me. We do not have true financial independence, because the antiquated rules do not allow us to fully prosper.

That barrier is what truly makes it impossible to achieve full equality.

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8 thoughts on “Redefining Disability Challenge – Question 26

  1. There is something wrong with this picture. Having a background with an agency that deals with social work, young families were always having to make these same decisions such as continuing with food stamps to feed their children, or take a higher paying job that doesn’t cover all costs of basic needs such as food, clothing and shelter. Not to mention that it was in a rural setting, without public transportation and now you are adding in costs of vehicles, tires, insurance, etc. Somehow this needs to change. Maybe your voice, added to others, will open up eyes to this cycle.
    It should not have to be an either or decision. Very good, Denise. I know many of your readers will “get it”

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    • You provide another side to this complex issue. The government is supposedly pushing people with disabilities into employment. But the system still needs work before it will truly promote independence.

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  2. I am outraged by the limitations of the rules in the US. I wonder if Australian rules are as unrealistic; whether our policy and regulation makers understand the ramifications of decisions. To not allow its taxpayers to save money is an extraordinarily bad economic decision for any country.

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  3. It’s hard for me to imagine not having emergency funds. That has to be unsettling to say the least. As always you have provided concrete examples that drive home the absurdity of the system. There has to be a better way.

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    • This year, Congress authorized the ABLE Act, which allows some people with disabilities to create special savings accounts which (similar to college savings accounts) will not interfere with benefits. But, in order to qualify a person must acquire their disability prior to the age of 26. So – break your neck at 28 and you’re out of luck. Also, states have to determine how they will implement the law into state tax law. So my state still has yet to outline how the accounts will work. Like college savings programs, family members can contribute assets so parents can safe for their disabled child’s future. But, I can’t make any additional money – so I still have nothing to save. It’s a start, but hopefully not the final word.

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