My Twin Brother, Danny, Needed Better Home and Community-Based Services (by Brian Trapp)
Brian’s brother, Dan. [image description: A man with light skin and close-cropped dark hair wears a white and orange football jersey. He is seated in a wheelchair that is decorated with orange crepe paper. He’s smiling. A shelf filled with house plants is behind him.]
Danny loved to tease me. I was his younger brother by four minutes, a fact he never let me forget. If you asked him, “Danny, who’s ugly?,” without fail he’d yell “I-an!”-- his version of my name. When I sang to him, he heckled me with a long blasted “Ahhhhh!” drowning out whatever melody I had.
Danny had cerebral palsy and intellectual disabilities. He lived at home with us until he was 24, until my mother did not have enough help to provide the 24/7 care he needed.
If Danny had had access to the level of Home and Community-Based Services (HCBS) that President Biden has proposed in The Build Back Better Act, he could have continued living at home, where he belonged.
In 2005, when we were 22 years old, I worked as Danny’s home health aide before I left to teach English in China. I cherished those hours with my brother, falling into the rhythm of his needs. I loved pushing him through the mall, where I’d give him wheelies down the department store aisles. I loved taking him for ice cream, spooning him bite after bite and hearing him say, “More.” I loved taking him to the movies, where he’d crack up at all the dirty jokes he wasn’t supposed to “get.” I’d spent four years in college but here was another body of knowledge: how to help him brush his teeth hand-over-hand, how to position him for bed with a pillow under every stress point, how to translate what he meant by reading the tone of his 12 words and physical expressions. He made me feel more useful than I’d ever felt in a classroom.
I started working for Danny because my mother had difficulty finding help, due to a lack of Home and Community-Based Services in Ohio, where we lived. My mother provided Danny’s care by herself for the first 18 years of his life. When Danny qualified for Supplemental Security Income (SSI), Ohio only approved help for showering and feeding, about 17 hours per week. Often, the aides wouldn’t show up. I wasn’t sure how my mother would manage after I left for China. I thought about canceling my overseas plan.
But she told me not to worry: “You need to have your adventure.” Getting on that plane was one of the hardest things I’ve ever done.
In China, over the phone, my mother told me that Danny wasn’t doing so well. The aides often didn’t show up, and the ones who did often seemed disinterested. For one guy, she timed it: 40 minutes before he said one word to my brother.
Then my brother’s swallow reflex failed and he got a feeding tube, which required a whole new level of care. There were not many home health care workers who could handle his feeding tube. Four months later, my mother reached her breaking point and made the difficult choice to transfer him to a group home.
From left to right, Danny, their mother, Brian. [image description: Two young boys in matching striped shirts wear cone-shaped party hats. One is seated in an adapted high chair, the other stands next to him. Their mother wears a pink sweater and poses between them, holding out a cupcake with four lit candles.]
I returned from China just after he moved. It killed me that I wasn’t there to help with his transition. One night, he came home and was his normal happy teasing self until it was time to go back. In the kitchen, as it grew late, he sensed it: he got stiff and his neck strained against his head rest.
I asked him, “What are you mad about, Dan?”
“Mama,” he said and then yelled. He knew he was going back. My mother stood in the kitchen, doing the dishes, trying not to cry.
I said, “Danny, listen. We have to grow up. We can’t live with Mom and Dad forever. We have to move out and get our own places. Our sister had to do it. I had to do it. You have to get your own place now, too. Dan, we are still a family.”
From that day forward, Danny seemed to accept his new home. He let me help him through his transition, and I was proud I could finally be there for him. But in retrospect, when Danny yelled at my mother that day, he was right: he should’ve been allowed to live at home. Although he handled his transition with grace and maturity, he wanted to live with his family. But the lack of long-term Home and Community-Based Services made his transition inevitable.
At the group home, he was exposed to neglect: after an aide failed to check on him, he fell out of his bed. He did not feel safe. Danny died in 2011, due to complications of pneumonia and a medical mistake.
If Danny had had access to the level of HCBS that President Biden proposed investing in, and that the House passed as part of the Build Back Better Act, he could have continued living at home, where he belonged. The Build Back Better Act would increase the care workforce by creating better jobs for home health care workers: raising wages and providing better training. It would create thousands of new jobs and allow millions of unpaid caregivers to get the support they need. It would save lives.
My twin brother passed away in 2011 but I still have his messages on my phone, when he called to make fun of me. “I-an!,” I still listen to him say. Danny deserved better. People like my brother should be able to stay at home, where they can tease their little brothers and be with the family they love. We need the Senate to fulfill President Biden’s promise to our families and finally pass the Build Back Better Act.
Brian Trapp is a fiction and creative nonfiction writer. He teaches creative writing and disability studies at the University of Oregon and is currently a Steinbeck Fellow at San Jose State University. He is at work on a novel and a memoir, both based on life with his twin brother, Danny. If you’d like to read more about Dan, check out "Twelve Words" and "You Robbie, You Baka," both available online. Follow Brian on Twitter at @btrapperkeeper.