I’ve been advocating for people with developmental disabilities for over 30 years, but the truth is—I didn’t choose this fight. I was born into it. Living with cerebral palsy, I’ve faced a lifetime of challenges, and I’ve learned that silence gets you nowhere. If I didn’t fight for myself, no one else would.
Medicaid—specifically Florida’s Home and Community-Based Services (HCBS) waiver—is the reason I can live in my own home in South Miami, and not in an institution. It’s what allows me to have dignity, freedom, and a voice. But just because I have Medicaid doesn’t mean the struggle disappears. Every single day is a battle—physically, emotionally, and mentally.
Living with Cerebral Palsy: My Daily Reality
Let me take you through what a day in my life really looks like.
I live with my elderly mother, who I love dearly—but she can’t help me. She suffers from severe arthritis, which makes it physically impossible for her to assist me with any of my daily care. So when my caregiver doesn’t show up, I’m truly on my own. That’s a terrifying reality to live with.
I wake up in the morning and—unlike most people—I can’t just roll over or get up. I rely on a special ceiling lift system to safely transfer me from my bed to the bathroom or to my wheelchair. That equipment is absolutely essential—it protects both me and my caregiver from injury. Without it, I couldn’t start my day.
From there, it’s onto personal care. I need help with bathing, especially in the mornings when my muscles are tight and cold water can trigger painful spasms. My caregiver helps prepare warm water and assists me throughout the entire showering process. Without that help, I’d go without bathing.
Getting dressed isn’t something I can do alone. Even putting on a shirt or positioning my legs into my lateral thigh supports in my wheelchair requires help. I have limited mobility, and every small task is a coordinated effort between me and my aide.
At breakfast, I depend on someone to prepare my meal, bring it to me, and sometimes help me eat—because I can’t reach high cabinets or safely use the stove.
Throughout the day, I need help transferring to the toilet, taking medications, repositioning in my chair to avoid pressure sores, setting up my tablet or computer, and getting in and out of vehicles for appointments. If I want to go outside for some fresh air, someone has to be there to help me.
At night, the routine repeats itself in reverse—help getting undressed, brushing my teeth, using the ceiling lift to transfer back to bed, and adjusting my position so I don’t wake up in pain. If I drop something like my phone or remote control after I’m in bed, I can’t just reach down and grab it. I have to wait for someone to come.
This is my daily reality. Every single day.
Medicaid Is What Keeps Me Going
None of these tasks would be possible without the help I receive through Medicaid. The HCBS waiver pays for my personal care attendants, transportation, medical equipment, and the ceiling lift that makes safe transfers possible. Without it, I would lose not only my independence—but also my ability to live safely.
And yet, I live with constant fear—fear that a caregiver won’t show up, that the program could be cut, or that all the support I rely on could vanish with the stroke of a pen.
The Human Cost of Cuts
Politicians talk about “tightening budgets” like it’s some simple numbers game. But for people like me, these aren’t numbers—they’re lives.
A few years ago, one of my personal care aides disappeared without warning. Just vanished. But this wasn’t during a normal time—this happened in the middle of the COVID-19 pandemic, when everything was already falling apart. I was alone, vulnerable, and terrified. No backup. No agency staff available. Hiring someone new was impossible. For months, I was left without the professional care I needed to survive.
My mom—who already suffers from severe arthritis—couldn’t help. One of her friends tried to step in out of kindness, but she couldn’t operate my ceiling lift—it was too high for her to reach, and too complex without proper training. We were stuck. I couldn’t get out of bed, shower, or even use the bathroom without risk.
We had to rely on neighbors, church members, and family friends to do whatever they could. Sometimes that meant someone holding me steady just to keep me from falling during a transfer. Sometimes it meant going hours—or a full day—without help at all. I lost sleep, I lost weight, and I lived in fear that one wrong move would land me in the ER during a pandemic that was already overwhelming hospitals.
That experience was traumatizing. It showed me just how close I live to the edge—and how fast everything can fall apart when even one caregiver disappears.
It’s Not Just About Me
I’m not the only one depending on these services. Millions of Americans—children, adults, seniors, and veterans—rely on Medicaid every day. And their families do too. When Medicaid is cut, parents may have to quit their jobs to care for their children full-time. Seniors may be forced into nursing homes when they’d rather age in place.
And let’s not forget the caregivers themselves. These are dedicated workers doing demanding jobs for very low wages. I’ve lost good caregivers because they couldn’t survive on what they were being paid. Some have left to work fast food jobs that paid more and offered better hours. That’s not just sad—it’s a systemic failure.
I’ve Been in This Fight My Whole Life
For over 20 years, I’ve been a client of Florida’s Agency for Persons with Disabilities, calling lawmakers, speaking out at meetings, and sharing my story again and again. Our silence will cause the system to fail—and abandon the people who rely on it.
Because people often ignore disabled voices, I show up and fight harder.
My Life Depends on This
Medicaid isn’t a favor. It’s not a handout. It’s what makes it possible for me to live with dignity, safety, and independence.
Disability doesn’t discriminate. It can happen to anyone—through birth, illness, accident, or aging. One day, you or someone you love may need these same supports.
So I’m asking you—stand with me. Let’s protect Medicaid. Let’s fight for the people who depend on it every single day.
Because our lives depend on it.
Bio:
My name is Daniel Carvajal. I was born with cerebral palsy and have used a wheelchair my whole life. I have a Bachelor of Business Administration in Computer Information Systems from the University of Miami. I gained strength, patience, and a voice for myself and others through living with a disability. Through my writing, I share my experiences to help raise awareness, break down barriers, and show that living with a disability is about resilience, dignity, and hope. Â
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