In this commentary, an SSI recipient, shares his powerful perspective on how the benefits program is both limiting and life-sustaining, and what needs to change.

This commentary is part of the Voices of Disability Economic Justice Project, a partnership with TCF’s Disability Economic Justice Collaborative. Voices of Disability Economic Justice showcases disabled writers’ first-person perspectives on the economic issues that matter most to them.

Growing up with Cerebral Palsy, my mom was my only caregiver. When I was 10 years old, I remember a social worker from the local Department of Social Services (DSS) telling me that if something happened to my mother, DSS would place me in a facility. Unfortunately, that day came when my mother was no longer able to care for me. When I was twenty-two, she became ill and I was forced into a nursing home.

No other options were given to me. I lived in the nursing home for nine years, which violated my right to access the home- and community-based services I need to live in the community—a right upheld by the Olmstead v. L.C. U.S. Supreme Court decision and protected by the Americans with Disabilities Act. Because of my condition, I was placed on the Alzheimer’s Unit, living with people who had dementia who were much older than me. While living in the nursing home, I had to argue with some of the nurses to get my medications. Sometimes I would wait an hour for a certified nursing assistant (CNA) to answer my call light, and most of them would turn the call light off without asking me what I needed. The CNAs would walk the other way when they saw me in the hall. Due to residents and staff being loud, and janitors buffing the floors at 2:00 AM, I never truly slept.

Every time that I left the nursing home property, I had to sign out due to Medicaid regulations. Per regulations, I was only allowed eighteen overnight trips a year. If I were to arrive back after midnight it would be classified as one of my overnights. Living in these conditions was very restrictive for me and I did not enjoy the basic freedoms that most people have.

This September I celebrated eleven years of freedom. Currently, I am able to sleep in peace and get my medicine on time. I can go out and do the things I want without having to jump through multiple hoops. I can also eat the foods that I enjoy. I am able to do these things through the support of having caregivers.

I am a fierce advocate now. I advocate to help ensure that people with disabilities have equal opportunities and access to things like safe and affordable housing and better transportation options. Unfortunately, where I live these things are still insufficient and people with disabilities like me really struggle with these issues on a daily basis. I currently work with local, state, and federal legislators on improving the quality of life for their disabled constituents on these issues. I serve on several local boards and committees.

A few years ago, I also served on state boards. Unfortunately, I had to resign because I didn’t have a ride to attend the meetings. However, I was recently able to get my own van. While I didn’t qualify for a traditional loan because of my lack of income, I was able to qualify for a specialty loan through the Assistive Technology Loan Fund Authority (ATLFA), a fund to help Virginians with disabilities obtain assistive technology. Every month I have to make a payment on it, which I am able to do thanks to Supplemental Security Income (SSI).

During my years spent in the nursing home, I only received $30 a month from my SSI check. Now that I no longer live there, I receive the maximum amount of SSI each month. SSI plays a big part in the freedom of disabled people by helping us pay our bills, buy personal items and make sure things are covered if there’s an unforeseen obstacle. SSI allows me to pay for gas and the upkeep of my van so I can go to the places that I want and need to be.

Even though SSI helps, disabled people still face many challenges. For example, when I contact my local Social Security Administration office and they cannot understand what I say because of how my disability affects my verbal communication, they will not allow my caregiver to translate for me, or they’ll say that something is taken care of when it’s not. I believe that people working in the Social Security office should be better trained on how to communicate with people who have communication disabilities.

It’s also important to note that for those of us living in housing that is based on income, our rent goes up when there is an increase to the amount of SSI we receive. I am also not allowed to have more than $2,000 in my bank account without being penalized. I used to work for my local baseball team. I want to work but cannot without being at risk of losing my benefits. And SSI’s $2,000 asset limit means that I cannot build up savings in case of emergencies.

As we are recognizing the fiftieth anniversary of SSI, I am very grateful for my SSI benefits. However, the Social Security system needs improvements so that individuals receiving SSI can thrive.