By Taylor Heagler
Like many young adults, I was eager to move out of my childhood home as soon as I could. At age 15, I had dreams of taking NYC by storm and backpacking across Europe as soon as I got out of college. It wasn’t until I realized that living independently is way harder for people with disabilities when you live in a state that has a waitlist for Community Home Care services that can last as long as 15 years. Forty-one states have Home and Community-Based Services (HCBS) waiting lists totalling more than 800,000 people, according to a February 2020 report by the Kaiser Family Foundation that surveyed state waiting lists. Texas, where I currently reside, leads the way with 385,000 people waiting on independence.
Those familiar with the system will tell you "get your kids on the waivers as soon as they are born" but I grew up in an upper-middle-class family in a Houston suburb. And as the only disabled child in my family, my parents knew nothing about planning for my future (at the time, they were told I wouldn’t have one) and didn’t qualify for any government assistance due to my dad’s income. Due to my father’s work schedule and my parent’s separation, I got my first caregiver/nanny when I was 10 years old which led to me becoming very independent early on. As someone with Spinal Muscular Atrophy Type 2, I am 100% dependent on someone helping me with my daily needs. I am also not mobile at all when I am out of my wheelchair and need someone with me at night when I’m sleeping in case something happens. Though I require services from providers to help me live my life, it doesn’t mean I shouldn’t be able to live independently and make my own decisions.
I started receiving Medicaid and SSI as soon as I turned 18. The most in-home attendant care services basic Medicaid will offer is 45 hours a week. I received 42. When I started navigating my care for college, I realized I was gonna have to find my own way of living independently. I offered free rent to my full-time caregiver. It became a roommate/provider dynamic that worked well for me in college because of my flexible school schedule and the state government program DARS paying for my rent while I was studying. Once I graduated, things got really rough in terms of working entry-level jobs. I was still number 10,000 on the waitlist for the Medicaid waiver CLASS. I started working entry-level jobs to build my skills and gain work experience. I lived in large cities (as they typically offer the best resources for people with disabilities) with a high cost of living, with rent for two-bedroom apartments being $1500-2,000 a month, I wasn’t left with much of anything to live off of after providing housing for my aid to combat the lack of hours I received for care.
Living independently was my only option, because I didn’t have a support system to take care of my needs in the city I grew up in. For years, I often had to rely on others and hope for the best, to get the care I needed. As I’ve moved up in my career and started working at DREDF, I finally have more resources to prioritize the care I need from financial security provided with my income.
I shouldn’t have to wait to live independently. And neither should anyone else. But until the resources we need are allocated by elected officials who are supposed to represent “we the people” disabled communities will continue to be left behind.
We have an opportunity to correct this imbalance, as a community and as a nation. The Build Back Better Act is so important because my story is one of many. No one should be waitlisted for the tools needed to live life on their own terms.
Taylor Heagler has a BFA in Emerging Media and Communications plus a minor in Visual Arts at the University of Texas in Dallas. Since 2016, she has been volunteering and working in museums plus community art centers. At the age of one, she was diagnosed with a neuromuscular disease called Spinal Muscular Atrophy.
As a multimedia artist, Taylor has a fascination for experimental concepts and being playful with materials. She is constantly experimenting with materials and mediums to create unique textures along with layering powdered pigments on top of acrylic paint to amplify texture. Storytelling is very important to her and is often depicted in her work asking questions over current interests and a connection with her body as a disabled person.