For the last 17 years, I've had to fight two painful battles. One is against a chronic illness. The other is against my own government, to qualify for and keep the disability benefits and health care that I need to survive. No one should ever have to go through what I've been through. Congress now has a rare chance to fix and update some of the key problems with Supplemental Security Income (SSI) as part of the Build Back Better package.
When I was in college in 2001, I got food poisoning that paralyzed part of my stomach. And so began a long battle with an illness. I never thought I would need Medicare, Medicaid, or disability benefits. But I couldn't pay my bills anymore and had to file for SSI and Social Security Disability Insurance (SSDI).
My experience with SSI has shown me how outrageous it is that Congress has failed to act to update the program in decades. As a result, it has become a poverty trap for millions of disabled people.
It took me years and an attorney to finally get a judge to approve my applications for Social Security disability benefits. I was told at the time I would get housing support from the government as well. After 17 years, I currently sit at number 4000 on the waitlist for Section 8 housing.
My experience with SSI has shown me how outrageous it is that Congress has failed to act to update the program in decades. As a result, it has become a poverty trap for millions of disabled people. I am highly educated--graduated summa cum laude--and I live in the suburbs. But the program's rules are so complicated and outdated that it's nearly impossible to avoid running into problems that jeopardize your benefits.
For example, in 2014, the SSA told me I had $3 too much in my bank account. I was allegedly in violation of an SSI program rule prohibiting recipients from having any more than $2000 in resources--an amount that hasn't been updated since 1989. Losing SSI wouldn't just mean I could no longer pay my bills; it would also mean losing Medicaid, which I rely on for health care.
For over six months, I fought to stop the government from taking away my benefits and health care. I tried everything I could think of, including contacting my Congressman for help. Finally, I appealed to a Social Security administrative law judge who, after looking into my case, found that I had never actually gone over SSI's $2000 asset limit. The Social Security Administration had made an error. Yet I nearly lost my income assistance and health care.
In my work as an activist, I've met many high-profile individuals from mayors to members of Congress. I've even met President Joe Biden. And in all these years nothing has changed. SSI's woefully outdated rules desperately need to be fixed and updated now--not next year or next Congress.
The Build Back Better package offers us the opportunity to end a moral wrong that never gets the attention from our leaders that it should. The SSI Restoration Act would fix and update SSI by not only updating the program's asset limits for inflation, but also by increasing sub-poverty benefits, raising outdated income limits, and eliminating penalties for marriage and family support.
While the entire Restoration Act is urgently needed to do right by the program's nearly eight million beneficiaries, Congress can and should include at least some of these reforms in Build Back Better. And it could do so relatively cheaply: in just one example, updating SSI's asset limits would cost just $8 billion over the next decade--which, as SSI champion Sen. Sherrod Brown (D-OH) has noted, would be a literal rounding error in the bill, even as it gets slimmed down.
No matter how poor or how rich you currently are, a day may come when you find yourself in need of SSI. Like me, you will discover that the program is outdated, complicated, and needlessly cruel.
Every day, I wake up to a broken promise from the government simply because I became suddenly ill all those years ago. It's time for Congress to finally keep that promise by reforming SSI in Build Back Better.
