Urgent-looking bills in envelopes.

SMA Financial Frustrations

I stopped working back in 2008. I was working for a bank in a mortgage call center. Some of you younger readers probably don’t remember the financial collapse back then.

The bank I worked for had about a dozen mortgage call centers in the United States. The one I worked in, was on the smaller size. We had about 500 employees in our building.

Working full-time was too much

The decision was made to close our call center. Around my 31st birthday, SMA was starting to wear me down physically.

Spending about 45 hours a week in the office became too much. I would be so exhausted by the time the weekend came that I was starting to not socialize the way I was used to.

I didn’t want to work and not enjoy my life. The call center closing came at the right time for me. I collected my severance pay and signed up for disability.

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Focusing on my health

Now it was time to focus on my health. I joined a local gym and started doing aqua therapy every day. The problem became money.

I was lucky for the first few years. My mom’s employer kept me on her health insurance since I was disabled and living at home. I think we all know how expensive insurance can be.

Paying for health insurance

After my mom retired, I went on Medicare. Medicare only covers 80%, so I purchased Medicare supplemental insurance to cover the remaining 20%.

Paying for Medicare and supplemental insurance took a significant chunk of my monthly income. I bought the best supplemental insurance plan which is expensive.

However, I like the fact that it covers everything and my health costs are fixed. I don’t have to pay any copays or deductibles.

Monthly income limits

Health insurance drives my decision on trying to work full time. I’m now in my mid-40’s and if I want to stay on Medicare, I am limited on how much I can earn.

I would like to be able to start a business of some sort. Due to SMA, I don’t have the energy to put in 40 hours at an office. If I were to start a business and start earning more than disability allows, I could be in danger of losing my Medicare.

The cost of health insurance is expensive. It becomes cost-prohibitive to try to start earning money. Living on disability limits my purchasing power. 

Advice, knowledge, and loopholes

What advice can I offer my younger audience? Great question!

Start investing at a younger age. Residual income from stocks, bonds, even rental income doesn’t count against SSDI. I know things get tricky when you are on SSI.

It’s important to start gaining knowledge when you are young so you know and understand all of the loopholes so that you can maximize your earning potential while still remaining eligible for assistance when it comes to your health care and personal care.

Most services for disabled people fall under Medicaid. In order to receive the benefits we need, most importantly personal care assistance, we can’t accrue any wealth.

Some states are better than others. I live in Pennsylvania which has a program called Act 150. This program doesn’t look at your assets. You only pay on a sliding scale according to your monthly income.

I’d love to hear what programs and loopholes you have discovered.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The SpinalMuscularAtrophy.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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