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Life with a Disability is Seriously Expensive

I have been seeing some absolutely disgusting comments by people in the LGBT community towards people with disabilities who are LGBT, as well. There is a level of classism in the LGBT community that is heart-wrenching. For a community that was discriminated against so much, how quickly they forget. I have seen so many people telling people with disabilities to get a job, and to quit whining about needing services or disability benefits. It isn’t just the LGBT community. Society in general is very ugly to the disability community.

No one understands until they have walked a mile in our shoes. It is a massive misconception to say that people with disabilities are freeloaders. Many of us have jobs. Those of us with the most severe disabilities often cannot earn a lot of money, so our jobs do not pay a lot. We are also often highly educated, but in order to get needed services, life and death services even, we cannot make a huge amount of money, so we have no choice but to have lower paying jobs.

When I was helping to set up the nonprofit NMD United, we gave a survey to people with neuromuscular disabilities, and what we found was consistent with this. Most of the participants were highly educated, most with at least a bachelor’s degree, though many with PhDs, JDs, or Masters degrees. At the same time, the average median income was around $20,000 a year, and participants cited that the reason for this was they had to keep their home healthcare services.

A lot of people seem to think that living with a disability requires no extra spending, at least not at the level it is. How sadly mistaken they are. I am going to try an experiment, and I hope you will follow along.

To start the experiment, I want you to look at your current income.

You have a disability. Since I understand my disability the best, let’s say you have Spinal Muscular Atrophy. You require a wheelchair to get around. You cannot do any of your ADLs (activities of daily living) such as getting out of bed, showering, dressing,, etc. without help. With the right support, you can have a job. So, for the experiment, the government has said people with disabilities no longer qualify for any health care services or insurance that pays for equipment. You have to pay for it out-of-pocket, or else your partner has to take care of you financially, and do it themselves.

To start, you need a a power wheelchair, so every five years you need an extra $30K. Power wheelchairs get run down from daily use, so every five years they need to be replaced. You also have to pay for tires every year, and new batteries every year, which is an additional $250-$500.

You need something to sit in when you are bathing so that’s an additional $1000 every five years. You may also need an additional toilet option, because you can no longer sit on the toilet without falling over, so that is an additional $2000 every five years. You need a lift, because it is too dangerous to lift you out of bed, on the toilet, etc. That is an extra $2700–$5000 every five years.

You require 24 hours of care, seven days a week, because you take medication, and maybe you have a trach. You cannot dress yourself, get yourself on the toilet, brush your teeth, brush your hair, or shower without help. You need help eating, you need help getting out of bed, and need to be positioned in your wheelchair every few hours. You need to have someone move your arms if they fall off your wheelchair controller, and so on and so forth. Using the amount that Medicaid pays for this experiment, that is an additional $240 a day, because Medicaid pays about $10 an hour depending on the state. That is an additional $1680 per week or $6720 per month. Mind you, this is several thousand dollars cheaper per year, then the option of living in a nursing home on the taxpayer’s dime, which is the only other option most people have. Nursing homes cost taxpayers hundreds of thousands of dollars per year, per person, so keeping us in our homes is much cheaper. It also allows us to contribute to society as consumers, workers, etc.

You take medication, which is over $500 a month.

You have a BiPAP machine, which you need to sleep. There is an additional $500 or $600 every couple years. Plus every single month, you need to replace some supplies. Every three months, you need a new mask. So that’s about $100.

You also have to get gloves and other medical supplies, in order for people to safely work, and take care of you. The monthly added expenses just keep adding up.

You also have to get a wheelchair accessible vehicle because public transit is unreliable, and you will lose your job if they do not take you to work in time. It has to have a wheelchair lift or ramp. Maybe you live in a rural area where there is no wheelchair public transport, so without a van, there is no work. For a new vehicle, you’re looking at $60,000. For a used vehicle, $30,000-$40,000. Now, the used van will only last about five years, if you’re lucky. The new van will probably last 7 to 10. Yes, wheelchair vans cost more than most luxury cars.

This is not counting the cost of therapy to help you stretch your body, anything you need for pain management, and various other accoutrements you generally have to pay out-of-pocket for, to make yourself feel more comfortable sitting down all the time.

Now, add in all the current bills you have…food, clothing, groceries.

Having figured out your cost of living, as a person with a disability, please tell me you and/or your partner can afford this out-of-pocket? Unless you are a millionaire, you are lying if you said yes.

People with disabilities NEED these services. Without them we have no choice but to go into a nursing home. As I mentioned above, that is incredibly expensive. It costs the taxpayers way more to do that, than it does to help us stay in the community. In the community, we can be consumers. We can get jobs. We can contribute to society. Well, many of us can.

I don’t think it is fair to shame a person with a disability who has not worked or cannot work because of their specific disability. I have been working almost my entire life, mostly low-paying jobs, despite going to college. I’m not asking people to pay my bills. I’m not asking for a vacation. I’m asking for the tools I need, to succeed. However, for those with serious disabilities who cannot work, I think it is wrong to shame these individuals, because it is not their fault they cannot work. They depend on things like SSI to survive. They contribute to society in many other ways, and deserve to be a part of our society.

Living with a disability is insanely expensive. I just wish people would not be so judgmental. This could be you, tomorrow. Nearly every single person experiences a disability at some point in their lives. You should care about disability rights, before it happens to you, because by then, it is too late to help the situation.

Photo courtesy of CC: Full Coverage Insurance

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4 comments

  1. Thank you for putting this out. My partner is a partial parapalegic, and fortunately is still able to ambulate in our home. So our expenses are not as high as you stated, for now. Eventually, she will lose the ability to walk, and will be in a wheelchair all the time. I have my own disabilities, which will prevent me from being able to provide most of her physical care. I worry about this all the time, and am so glad that you are speaking up. I hope that we can get the changes we need so all of us with disabilities can live our lives the way we want and deserve…not shut up in a home somewhere.

  2. I really was kind of conservative with the numbers…. because I didn’t account for anything like home modifications, which can be hard to get paid with assistance, or any other needs people with a non-physical disability must pay. I ignored any type of therapy that might not be covered, hospital bills, doctors appointments, etc.

    I just hope people understand the idea.

    Thank you for sharing your story! I agree with you, and thank you for the comment.

  3. Very nice thought-provoking article. Why do you think it is very nice thought-provoking article. Why do you think it is that knowing The income limitations, so many disabled people still choose to get advanced degrees knowing that The odds are they will not be able to use their further education to better themselves monetarily? It seems like a lot of us in the disability community are t The odds are they will not be able to use their further education to better themselves monetarily? It seems like a lot of us in the disabled community are throwing a lot of time and money away on student loans

  4. I was already feeling depressed, so this came at sort of the wrong time. But I know it’s important, and hope your words reach the brains (and hearts) of fellow citizens, LGBT or simply an ally.
    I don’t need a wheelchair, so I don’t have the HUGE expenses. But since I’ve only had a disability for 2.5 years, I notice EVERY item I have to buy that I wouldn’t have bought when I was whole. I needed a more expensive fan I could reach and turn on and off; I can’t just buy vegetables, I need already chopped vegetables; my apartment manager gives me a good deal on a garage because there’s no WAY I can scrape ice off of my car (if it’s the fluffy snow, I can do that, though it’s easier to use my arm than a snow brush).
    There’s other expenses, like having someone come over to take laundry and trash down the steps. And if we ever move? HTF can I pack? I used to be able to carry stuff. I have an old photo of me as an Army private at a base in Massachusetts and my buddies, jokingly, had put a 300 pound canvas command tent (rolled and folded, obviously) across my shoulders. I couldn’t lift it, but I could carry it pretty easily; I weighed 149 pounds at the time and I’m laughing in the photo. Now? I can’t carry a box of books. Trying (which I still tend to do) is frustrating. So do I find a place that comes and packs up all our shit prior to loading in a truck, delivering it and then unloading it? What’s THAT going to cost? This isn’t a poor me post. I mean, it is, but that’s not the main point, which is people living with a disability have more expenses than the visible ones; it’s not just leg braces and canes and meds (my med costs are under $100 a month, thankfully) but stuff able-bodied don’t even think of, or maybe think of as luxury items. Thanks for your article, thanks for the great headline; I wish the headline alone would get spread all around the ‘net!

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