How to Build and Manage Personal Care Teams for Independent Living
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Managing a team of Personal Care Assistants (PCAs) is one of the most important tasks for achieving independence. Building and managing a care team takes time, effort, and careful consideration, but a strong team can help you thrive and live a self-directed life aligned with your personal goals.
First, you need to secure funding and authorization for PCA hours. Most private insurance companies don’t cover Home and Community-Based Services (HCBS), so Medicaid will likely be your best option. Applying for Medicaid can be a lengthy process, so I recommend contacting your local Center for Independent Living (CIL). Every CIL is required to provide Information & Referral services to help people navigate Medicaid applications and understand the programs and waivers available in their state.
Programs and waivers vary in the types of assistance PCAs can provide. Some may allow attendants to drive you, help with pet care, or support you in the community, while others may have limitations. Be sure to ask about these details to ensure the program matches your needs.
Once you’ve secured funding, you’ll need to choose between an Agency Model, a Consumer Directed Services (CDS) model, or a combination of both. Each option has advantages and drawbacks, so it’s important to think about your lifestyle and preferences.
In this model, the agency handles hiring, training, and firing attendants. Your role is to work with a care coordinator to set up a schedule and outline your needs. The agency then assigns PCAs to assist you and manages any staffing concerns.
With CDS, you recruit, hire, train, and manage your own PCAs. This model, designed by and for people with physical disabilities, offers autonomy but requires significant involvement. Depending on your state, you may work with a CDS vendor (such as a CIL) to handle payroll and tax requirements or receive direct funding to pay your PCAs. Medicaid case managers or CIL staff can guide you in navigating program options.
For some, a mix of Agency and CDS works best. For example, I use the Agency Model for nurses who assist me at home and CDS for helpers who support me in the community, at work, and at school. This approach doesn’t work for everyone, and it may take time to find the structure that suits you.
If you choose the Agency Model, research agencies with strong reputations for reliability. During the intake process, clearly outline your needs, preferences, and the types of personalities you work well with. If an assigned PCA isn’t a good fit, let your care coordinator know as soon as possible so they can address the issue or arrange a replacement.
Building your team with CDS requires you to manage everything, including scheduling, recruiting, interviewing, and training.
Start by creating a schedule or routine. I prefer using a Google Sheet with color-coded shifts and activities, but you can choose any organizational system that works for you. Provide a typed description of each shift’s tasks to ensure potential PCAs understand their responsibilities. Some people may not want to drive or handle tasks like transferring you to your soccer chair, so it’s important to be upfront about expectations.
If I’m recruiting new PCAs, I’ll often make a flyer using Canva (please don’t judge I am not a designer) with information about myself, available shifts, and a brief description of tasks. Share your flyer on social media, with local college programs like OT/PT/Nursing, or through family and friends.
Before hiring a new PCA, have a few conversations to ensure they’re a good fit. I typically schedule a phone call followed by an in-person meeting. Over the years, my process has become more informal—sometimes I’ll chat with potential PCAs while walking in the park or grabbing a sandwich. I like to have potential new PCAs help me with something, even if it is just refilling my water bottle, to see how they follow verbal instructions since that is a key part of the job.These casual interactions help me gauge their personality and ability to follow verbal instructions, which is a key part of the job. There is no one best way to conduct meetings and determine if you want to hire someone as a PCA, and it might take several years to feel confident with this process.
Once you decide to hire someone, follow up with a call to review the onboarding process, finalize their schedule, and plan training. Training may include shadowing another PCA or practicing tasks like transfers. I expect the first few shifts with a new PCA to be a little clunky as we establish a routine.
Since PCA tasks are so personal, it is important to be open and kind about providing feedback. I check in regularly with my PCAs to ask if they need clarification or updates to their schedule. When I need them to adjust how they assist me, I frame feedback positively:
For example: “You’re great at helping me get ready for bed, but I haven’t been sleeping well because I’m uncomfortable. Could you try rolling me using my hips and shoulders instead of my knees and shoulders? It should help me sleep better. Thanks for everything you’re doing!”
Giving feedback is difficult, but your PCA is there to help you, so it is important to be able to ask for what you need. Practicing giving feedback to a friend or family member can make the conversation with your PCA a little bit easier.
Sometimes, a PCA isn’t the right fit, and you’ll need to ask them to leave your team. While this is tough, having a plan makes it easier. Notify trusted friends or family in case you need backup care. When having the conversation, thank the PCA for their time, explain why it isn’t a good fit, and outline next steps. I always try to provide constructive feedback so they can improve if they choose to take on another PCA client, but you don’t have to do that if you feel uncomfortable.
PCA relationships often end naturally due to schedule changes or life events, like starting a full-time job or moving away. In many cases, you can maintain a positive relationship with former PCAs as friends. Some of my closest friends started as PCAs and became part of my life long after they left my care team.
Managing a care team is a journey that requires patience, communication, and flexibility. Whether you use an agency, CDS, or both, the key is creating a team that supports your independence and aligns with your goals. It may take time to find what works best for you, but with persistence and creativity, you’ll build a team that helps you thrive.