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, Greaves writes about the critical role direct care workers play in supporting independence for people with disabilities.
When people ask me what independence means, I often smile because my definition might not look like what most people picture. For me, independence isn’t about doing everything by myself, it’s about having the right supports in place so that I can live the life I want to live. And at the heart of that support system are direct care workers.
Direct care workers are often invisible to the outside world. They may not get the recognition of doctors, nurses, or therapists, but let me tell you: they are just as vital. Without them, so many of us living with disabilities or chronic illnesses wouldn’t be able to get out of bed, pursue careers, attend events, or even handle daily routines with dignity.
I’ve experienced firsthand just how critical direct care workers are. My journey with disability has taught me that behind every “I got this” moment is a team of people making sure I can actually “get this.” And I don’t take that for granted, not for a second.
In this blog, I want to share the impact of direct care workers from my perspective, talk about the role of Personal Care Management (PCM), and why these supports are not just about assistance, they’re about freedom, dignity, and empowerment.
Why Direct Care Workers Matter So Much
Let’s start here: direct care workers make independence possible.
Think about all the small daily tasks that most people take for granted, getting dressed, cooking a meal, showering, cleaning, or even running errands. Now imagine what life would look like if you couldn’t do those things alone. Without someone to help, you’d be stuck.
Direct care workers step in to bridge that gap. They are trained to assist with personal care, household tasks, and sometimes even medical needs. But their role goes beyond just “helping.” They are often companions, advocates, and the steady hands that allow people like me to show up in the world on my terms.
For me, a direct care worker isn’t just someone who helps with physical needs, they’re someone who helps me maintain my identity. They allow me to keep being Keisha: an entrepreneur, advocate, friend, and fashion lover.
My Journey with Personal Care Management
One of the systems that has made a huge difference in my life is Personal Care Management or PCM. For those who aren’t familiar, PCM is a service model that allows people with disabilities to have more control over their own care. Instead of relying on agencies to make all the decisions, PCM gives individuals the ability to hire, train, and manage their own direct care workers. This is a game changer.
With PCM, I get to choose who comes into my home, who supports me, and how that support looks. That choice matters more than words can explain. Imagine having someone in your personal space every single day, it’s not just about whether they’re capable of helping, it’s about whether you feel comfortable and respected.
Through PCM, I’ve been able to create a team of people who understand my needs, my routines, and even my quirks. They know how I like things done, they know when I need space, and they know when to step in. That kind of trust doesn’t happen overnight, it comes from the empowerment PCM provides.
PCM also means I have flexibility. If my needs change, I don’t have to fight with a system to adjust. I can have conversations directly with my workers, make a plan, and move forward. It’s about ownership of my care, rather than feeling like someone else is in charge of my life.
The Human Side of Direct Care
What people don’t often realize is that the relationship between a person with a disability and their direct care worker is deeply human.
Yes, it’s a professional relationship, but it’s also intimate. This is someone who sees you in your most vulnerable moments, helping you dress, bathe, or eat. There’s a level of trust and respect required that goes beyond almost any other type of working relationship.
I remember one direct care worker who started with me a few years ago. At first, she was nervous, unsure if she would remember all the details of my routine. But within a week, she not only had it down, she went the extra mile. She learned the exact way I liked my pillows arranged so I’d be comfortable, she noticed my love for fashion and would help me style my outfits, and she even encouraged me before big speaking events when I was feeling nervous. Over time, she wasn’t just a worker, she became a true support system. On days when my body was exhausted, she made sure I had everything I needed while also reminding me that it was okay to rest. That type of care is priceless.
Independence, Redefined
One of the myths about independence is that it means “doing everything alone.” But for those of us living with disabilities, independence is often a team effort.
Direct care workers allow me to live the life I want. They help me attend events, travel, connect with my community, and chase my dreams. They make sure I don’t have to say “no” to opportunities just because of logistics. That’s independence, having the freedom to say “yes.” PCM strengthens this independence because it puts me in the driver’s seat. Instead of someone else dictating what my care looks like, I get to decide. And that’s powerful.
The Challenges Direct Care Workers Face
As much as I love to celebrate direct care workers, I also need to be real: the system doesn’t always treat them with the respect they deserve.
Many direct care workers face low wages, limited benefits, and little recognition. The turnover rate is high, and that instability hurts everyone, workers and the people they support.
I once had a direct care worker who suddenly left because she needed a job with higher pay. I understand that everyone deserves to earn a living wage, but it left me scrambling. For weeks, my schedule was chaotic. I had to rely on family more than usual, cancel a few commitments, and put my own energy into training new people. That instability was stressful, and it showed me how fragile the system can be when direct care workers aren’t supported the way they should be.
The Ripple Effect of Their Work
Here’s the bigger picture: when direct care workers support people with disabilities, they’re not just impacting individuals, they’re impacting families, communities, and society.
Think about it. With the right supports, people with disabilities can work, volunteer, create, and contribute. We can build businesses, share our voices, and show up in ways that enrich our communities. But none of that happens without the foundation direct care workers provide.
Their work ripples outward. When they help me, they’re not just supporting me, they’re enabling me to empower others through advocacy, entrepreneurship, and community work. That’s how critical they are.
Gratitude, Every Day
When I wake up in the morning and someone is there to help me start my day, I feel grateful. When I can attend an event without worrying about logistics, I feel grateful. When I can simply live life with dignity and joy, I feel grateful.
Direct care workers don’t always hear “thank you” enough, so let me say it here: thank you. Thank you for showing up, for caring, for giving me and so many others the ability to thrive.
Moving Forward: What Needs to Change
As I look to the future, I know we need to keep advocating for the recognition and support of direct care workers. That means:
- Better pay and benefits so this work is valued as the essential service it is.
- Training and support systems that prepare workers for the complex needs they’ll face.
- Policies that strengthen PCM programs and expand access so more people can have choice and control over their care.
- Awareness campaigns to highlight the value of direct care workers, not just within the disability community but in society as a whole.
Direct care work isn’t “unskilled labor.” It’s highly skilled, deeply human, and absolutely essential.
Closing Thoughts
At the end of the day, my independence isn’t measured by how much I can do alone, it’s measured by how empowered I feel to live life on my terms. Direct care workers and PCM are at the heart of that empowerment. They make it possible for me to chase my dreams, grow my businesses, advocate for my community, and simply live each day with dignity and joy.
So the next time you hear the term “direct care worker,” I hope you think about more than just a job title. Think about the people whose lives are being transformed every single day because of their work. Think about independence, freedom, and humanity. Because behind every person like me who’s out in the world chasing dreams, there’s often a direct care worker making sure we have the support to soar.
Are you interested in becoming a Personal Care Attendant (PCA)? Visit the Massachusetts PCA Directory to get started.