Keisha Greaves is the founder of Girls Chronically Rock, an adaptive fashion consultant, and a self-advocate. In a new blog series, Keisha will share her story, as well as her perspective on key issues for the disability community. In this entry, Keisha writes about the importance of caregiving, and provides advice for navigating a complex system for people with disabilities.
When people hear the word “caregiving,” they might think of an elderly person being helped by a family member, or maybe a nurse coming into someone’s home a few hours a week. But for those of us in the disability community, caregiving is our day-to-day reality, and often, it’s the difference between surviving and truly living.
Living with Muscular Dystrophy means that I require assistance with tasks many people don’t even think twice about, such as getting dressed, preparing meals, transferring from my bed to my wheelchair, even brushing my hair some days. And as the founder of Girls Chronically Rock and GCR Adaptive Solutions, I balance not only my personal health but also running two organizations focused on empowering the disability community. The need for caregiving in my life is not occasional. It’s essential.
I want to take you through what that journey has looked like for me, how I found the support I needed, the challenges I’ve faced, and what I’ve learned that might help you or a loved one navigating this system.
What Caregiving Means to Me
For me, caregiving isn’t just about physical help. It’s about dignity. It’s about having a routine. It’s about being able to get out into the world and run my business, host events like Disability Pride Day, and travel for my brand without constantly worrying about who’s going to help me in the morning or get me in and out of my wheelchair.
Caregiving means independence, even when it’s built around interdependence. That might sound like a contradiction, but it’s not. With the right support, I’m empowered to be the boss of my own life.
What Are the Resources Available for Disabled Folks?
Over the years, I’ve learned that there are some powerful (and underutilized) resources available to people like me. It wasn’t easy to find them, there’s no one-size-fits-all manual for this, but here’s what I’ve personally used and found helpful:
PCA Programs Through MassHealth
I live in Massachusetts, where we’re fortunate to have a relatively robust PCA (Personal Care Assistant) program through MassHealth, our state’s Medicaid system. This program literally changed my life. Through it, I’m able to hire and manage my own care team. That means I get to choose who helps me and when, and I can train them according to my needs.
Centers for Independent Living (CILs)
Places like Boston Center for Independent Living (BCIL) offer so many services, from help applying for PCA hours to peer mentoring and advocacy. They’ve been instrumental in helping me understand my rights and advocate for myself when things got difficult.
GCR Adaptive Solutions
I started GCR Adaptive Solutions to help other disabled folks navigate the same systems that I had to figure out on my own. We connect people to caregiving, transportation, and housing resources, and we offer a safe space to share these experiences without judgment.
Online Support and Community
Sometimes, just hearing someone else’s story makes all the difference. Whether it’s through Instagram DMs or virtual support groups, I’ve been able to connect with other women of color with disabilities, trading tips and encouragement when the system feels too heavy.
How I Got Started with the PCA Program
Let me walk you through what getting set up looked like for me:
Getting Evaluated
First, I had to apply through MassHealth. They sent someone to my home, a nurse assessor, to evaluate my needs. It felt a little nerve-wracking at first. I had to be very honest and open about what I could and couldn’t do.
Being Approved for Hours
Based on the assessment, I was approved for a set number of PCA hours per week. I remember that moment so clearly, feeling relief but also pressure. How would I find the right people?
Hiring and Training My Team
I’ve hired friends, referred acquaintances, even posted in Facebook groups and asked around my community. It’s been a mix of trial and error. I always make sure to set boundaries and create a respectful working relationship.
Ongoing Management
Managing timesheets and communicating with the fiscal intermediary (who handles payroll) is another part of the job. It took a while to learn the system, but now it’s become second nature.
The Challenges No One Talks About
Let me be real: caregiving is not always smooth. Here are some of the struggles I’ve personally dealt with:
PCAs Who Don’t Show Up
I can’t tell you how many mornings I’ve woken up ready for the day, and no PCA shows. No text. No call. And just like that, I’m left figuring it all out. It’s stressful and at times, scary.
Burnout (Mine and Theirs)
It’s a lot of emotional labor to constantly manage your own care, advocate for your needs, and also be a good employer. Sometimes, I feel like I’m running two businesses: Girls Chronically Rock and my own care team.
Invasion of Privacy
You’re inviting someone into your most intimate moments, into your home, your personal space, your body. That takes trust, and not every caregiver gets it. I’ve had to have difficult conversations when someone crossed a boundary.
Navigating the System
The paperwork. The delays. The bureaucracy. I once waited nearly two months for reassessment paperwork to go through, during which I was down a PCA and couldn’t get coverage. That kind of delay impacts your whole life.
What I’ve Learned Along the Way
If you’re just starting this journey, here’s my advice:
- Trust Your Instincts. You know what you need better than anyone. Don’t let anyone minimize your voice or your care requirements.
- Build a Backup Plan. Life happens. Have a few backup caregivers or friends who can step in temporarily if someone flakes.
- Treat Caregivers with Respect, but Set Boundaries. This is a working relationship, and communication is key.
- Advocate Relentlessly. Whether it’s for more hours, better pay for caregivers, or more accessibility, don’t stop speaking up.
What Needs to Change?
We need systemic change, starting with:
- Higher Pay for PCAs. This is skilled, essential work and should be compensated as such.
- Streamlined Application Processes. The red tape is overwhelming and inaccessible for many people who need help urgently.
- Emergency Support Networks. When a PCA cancels, there should be a list of on-call or backup staff available through agencies or the state.
- Cultural Competency. As a Black woman with a disability, I’ve had experiences where I didn’t feel seen or understood. More training, more inclusion, and more diverse caregivers would make a world of difference.
Final Thoughts: Caregiving Is Power
Caregiving is a form of power. It enables me to live, to travel, to speak on panels, to run my businesses, and to exist in a world that’s not always made with me in mind. There’s nothing weak about needing help. In fact, it takes strength to ask for it, to manage it, and to keep moving forward through all the hurdles. If you’re in the thick of navigating care, I see you. If you’re feeling alone in this process, reach out. Share your story. And if you’re considering becoming a caregiver, know that your work changes lives. Together, through advocacy, community, and compassion, we can build a world where caregiving is accessible, sustainable, and dignified, for all of us.