#HandsOff is a series on The Arc’s blog that features a new story each month from individuals and families across The Arc’s network about how some of today’s key policy issues impact their day to day lives.
By: Steve Grammer
My name is Steve, I live in Roanoke, Virginia and I have cerebral palsy. I like to do the kinds of activities many people do — go out to the mall, restaurants, concerts, bars, and travel to places like the beach. I am an advocate with people with disabilities, I go to a lot of events to talk with members of the legislature and other government officials. I recently attended an event with U.S. Senator Kaine, and a Town Hall Meeting with Delegate Rasoul. I also serve on several state boards.
I have a lot of expenses due to my condition. In order to live in the community in my own apartment, I have to have caregivers assist me in daily activities that most people don’t think twice about. They help me with everything from healthcare, making phone calls, administering medications, meal prep and eating, housekeeping, and they accompany me to events in the community.
I receive Supplemental Nutrition Assistance Program (SNAP) benefits to help me pay for food, but sometimes it’s not enough to cover my groceries. I also have Supplemental Security Income (SSI) that I use to pay for rent, transportation, personal hygiene, and other bills.
SSI helps me to have a decent life in the community — like everyone deserves. As someone who lived in a nursing home for nine years, I know how important that is. Living in the community, I am more independent. I can set up my own schedule, I know I will get good care, as I get to choose who I want to take care of me through Consumer Directed Services. I’m able to choose what and when I want to eat versus not knowing when, what or if, I will get fed (not to mention being rushed to eat in the nursing home).
I’m able to use the restroom when I want without waiting an hour or more for someone to answer my call light. I can sleep at night, go to bed when I want, versus having to use ear plugs every night because of other residents, or loud staff. If I have transportation I can be out in the community as late as I want without having to sign in and out of the nursing home and having to be back before midnight.
SSI gives me this independence. That is my only income. If the government decreases it or takes it away from people with disabilities, we cannot survive. Without SSI, many people with disabilities — like me — would end up back in institutions.
I strongly encourage the government to think about this very carefully and not make any type of cuts to SSI. Please do not take our independence away from us.