Why is SSDI Failing Keilani?

Get on disability, they said. It will solve all of your financial problems, they said. Well. They were *bleeping* wrong. Many of you have had questions since we started the new campaign, so let me explain why getting on disability has been more of a curse than a blessing.

The first thing to know is that when you become officially disabled under the United States Social Security Act, you start receiving Social Security Disability Insurance, or SSDI. (That’s good!) But getting approved for SSDI takes a loooong time — more than three years, in my case. (That’s bad.) However, because I was below the income threshold — like, WAY below it — I qualified for Medicaid while the SSDI process played out. Medicaid is GREAT. It covers 99.9% of all insurance-related medical costs. 

As soon as you start receiving SSDI, your primary insurance automatically switches from Medicaid to Medicare. (That’s bad.) While they sound similar, they ain’t. Medicare covers a fraction of what Medicaid does. Medicare also doesn’t recognize my primary care doctor as in-network, so I had to find a new one, which is notoriously hard. Medicare has deductibles for doctor visits, hospital visits and medications. (If you’re new here: I have a lot of those, along with expensive atypical/unconventional-use medications and medical equipment.) 

Here’s where it gets really fun: unfortunately, my SSDI puts me JUST above the monthly income threshold to qualify for Medicaid for the Blind and the Disabled (MABD). However, I can eventually qualify for MABD if I meet something called a “spend down.” 

That’s *essentially a deductible — usually around $5,000 for me — that I have to meet every five months for Medicaid to kick in as my secondary insurance and pick up whatever Medicare doesn’t… for however much of the five-month spend-down period is left and we start all over again. In case you’re wondering, spend downs eat up about half of my SSDI annually.

If you’ve gotten this far, thank you for reading. I hope it makes a little more sense how going on disability has created as many financial problems for me as it’s solved. Please reach out if you have any questions, comments, or need me to clarify something. 

With so much gratitude,

Keilani

PS: Stay tuned for updates on the upcoming surgery for the prolapses, and what I do to fight back against these injustices as the Chair of the Vermont Democratic Party Disability Caucus. Again, even if I am barely hanging on by a thread myself, I won’t stand idly by and watch this happen to others without trying to create positive change.