A few months ago, I got an awesome job. I am a part time (roughly 3/4 time) editor for a major disability and health website. I like my job because I’m helping people, using my writing and editing skills, and learning about the Internet media market. I can work from home, and I have some flexibility to travel. I have great coworkers and my disability is actually an asset. Most of my coworkers also have disabilities, or have relatives who do. It’s an ideal working environment.

I really enjoy my job. I’d love to increase to full-time, or nearly so. But I can’t, because I already have another part-time job. It’s not one I applied for or even wanted, and I’d quit in a heartbeat if I could. Unfortunately, that’s not an option. Because you see, having a disability is a part-time job.

I’m not talking about health, per se. Yes, I have the occasional day where I’m not feeling well, and it’s nice that I don’t have to go into an office. I can sit at my desk in my PJs with a heating pack and not worry about people seeing how crappy I look. My job is on West Coast hours, so I have some extra time in the morning in case I need it. All those things put me on a level playing field with other workers. My disability in and of itself rarely hinders my work. The hassle of handling our byzantine system of financial, housing, healthcare, and attendant care benefits while working with a disability is another story.

I am able to work and keep my SSDI, Medicare, Medicaid, and Medicaid waiver benefits because of various state and federal programs known as “work incentives.” They allow working people with disabilities to earn income for a certain amount of time, or permanently, without losing cash and/or health benefits. Medical expenses and impairment-related work expenses can be deducted from countable income. There are also various accounts, some currently available and some pending due to the recently passed ABLE Act, for working people with disabilities to save money without it counting as income or resources.

spreadsheet of working with a disability expenses

A spreadsheet showing just a few of my numerous disability-related expenses. Blurred for privacy.

That all sounds great, right? It is, up to a point. I’m thankful that I have the ability to work, because it means a lot to me. I have a Master’s degree; I don’t want to sit around all day doing nothing. I want to succeed in a career that is meaningful, rather than being broke or trying to earn bits and pieces under the table. I want to earn money so I can restore my standard of living that was significantly reduced after the robbery. I want to be able to travel, and eventually move to the East Coast. I know I can accomplish all of these things, but our system doesn’t make it easy.

In order to keep my benefits while working with a disability, I have to document my medical and impairment-related work expenses. On the positive side, there are many deductions I can make, such as out-of-pocket attendants’ pay, food and supplies for my service dogs, my new computer, voice dictation software, and much more. I hope to get a new van soon, and I’ll be able to deduct at least part of that expense as well. I have to supply these expenses every three months to the Social Security and Medicaid offices. I save every receipt, and keep a spreadsheet of everything. I have to be careful not to earn too much money. I have some leeway for keeping my Medicaid waiver attendant care services, but for other stuff, there are actually disincentives for working too much because benefits go down. Sounds crazy, right? But it’s true.

Getting access to proper health care is another huge problem that takes up a lot of my time. One of the keys for me to succeed in a “regular” job was finding the right medication for my fatigue and depression. I’m allergic to SSRIs, the traditional antidepressant, and the related SNRIs carry a risk of seizures that is not acceptable for someone with cerebral palsy. My biggest issue is fatigue. Thankfully, I found the perfect medication — Modafinil, a.k.a. Provigil. It lifts away the heavy blanket of fog that sits over my body and frees my mind to think and function as it should. I hesitate to call anything a miracle, but it has been for me. There are studies showing how this medication helps people with cerebral palsy to move better. It has also been shown to help people with multiple sclerosis and other disabilities with fatigue.

So great news, I can live my life more like everyone else now, right? Not quite. After filling my first prescription, my insurances — all three of them — are refusing to pay. My doctor has appealed and been denied multiple times. They don’t seem to care that typical antidepressants don’t work for me, or that I deal with crushing fatigue. And even though it’s a generic medication, it costs $754 per month if I were to pay out-of-pocket. That’s almost half what I make every month. I can split the pills and only take half, but it’s still an insane expense. I’m trying to go through a nonprofit pharmacy that will give me three months of pills for $80, but who knows if they will actually come through. If not, my choice is basically pay $377 per month or lose my job. No one should be put in that position.

Due to the cost of my medication, I’ve been having to skip taking it on the days I don’t work. That leaves me feeling like a zombie when I’m trying to do the other tasks I must do to keep my job, like documenting my work expenses, dealing with Medicaid and disability paperwork, and taking care of myself by going to physical therapy and having a social life. I also need time to pursue my own personal goals, such as building this blog and my own brand/identity. I’m a strong believer in work-life balance, but in order for me to have it, I need more downtime than the average person. My unwanted part-time job dealing with the system makes fitting everything in next to impossible.

It doesn’t have to be this way. My problems could be virtually solved with a few simple changes. First and most importantly, we need universal health care. I know some people hate the idea of government insurance (often while simultaneously looking forward to having Medicare when they get old) — but public health care should be an option for everyone. All types of insurance need to cover attendant care like what I receive, so that working people with disabilities like me don’t have to limit our income and document every expense to get the help we need.

I should not be able to fall into a position where I make too much money to qualify for the home care I need to get out of bed, shower, get dressed, and so much more, but not enough to pay for it without impoverishing myself. No matter how much I will realistically earn, short of winning the lottery, I won’t make enough to cover my home care costs of nearly $4000 per month and still also survive. So why should I have to document my income and every monthly expense to mail in quarterly, just to keep my care? A yearly tax return should be enough. Yes, I cost more in taxes than I’ll ever pay, but if I can work while keeping benefits, I can give more value to society than some rich CEO who would otherwise be using that money to buy himself another fancy car.

Our current disability system is designed around the assumption that people with disabilities can’t work. It just perpetuates the harmful stereotype that we are not employable. I believe that many people who receive disability could work, at least part time, but don’t because they fear losing their benefits, even with the work incentive programs. This could be easily solved by separating the cash benefits from the health benefits and having different criteria for each. Receiving disability health benefits and attendant care should be based solely on medical need, and not tied to work status.

I’m very proud to be employed and succeeding with a disability. I won’t let these challenges stop me, just like I don’t let my cerebral palsy stop me. But I’m sharing my story in the hope that people will think about these issues when they vote. Currently there is a very important bill pending in Congress that would significantly help people like me. The Disability Integration Act would end state waiting lists for home and community-based services (including attendant care), prevent public and private entities from refusing care based on cost or service caps, and much more. It would give me the freedom to move to any state and still receive the same number of hours and quality of care as I have now. It would require that all insurance cover long-term care in a person’s home, which would free me and everyone else from having to limit and justify our incomes. Most importantly, it would mean that no person would ever be forced to live in a nursing home — including you, when you get old.

Disability issues are political issues, but they aren’t necessarily partisan. Most disability legislation over the years has had wide bipartisan support. So regardless of your affiliation or your representative’s affiliation, please contact him or her today and encourage them to cosponsor the Disability Integration Act. It will benefit everyone. And maybe then I can quit my “figuring out how to live on disability ‘job'” to focus on my actual job and life!

 
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Karin

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