Many of us need some help during the day, and some of us need a lot. We get that assistance from people all around us — our family, friends, coworkers, random good Samaritans and of course, personal care attendants. Personal care attendants in the morning, personal care attendants in the afternoon, personal care attendants in the evening, and personal care attendants at night … once to turn to the right and once more to turn to the left.
We need to hire qualified staff, build professional relationships, train employees, coordinate shifts, ensure tasks get done, keep things friendly and track hours and money so people get paid. It can be frustrating. Sometimes, exhausting. Managing it all can be the equivalent of running a small business — one that your life depends on. Your success really comes down to getting a few key things right: the hiring process, organizing shifts, human relations and payroll.
From Family to Professionals
Olivia Davis, 26, has muscular dystrophy and has relied on caregivers her whole life. Growing up, her parents provided most of her care. “I lacked a lot of independence because I had to rely on them,” she says. She couldn’t stay out late, hang out with friends, or do all the stupid high school things that teenagers do. Her folks burned out from the work, creating some stress in the family dynamics. It was time for a change.
In 2010, shortly after Davis graduated high school, her parents hired her first PCA. “The attendant would come to my house and hang out from 10 a.m. to 5 p.m.,” she says. “It was really awesome because I got to go to movies all the time, went out whenever I wanted, and used the bathroom whenever I needed.” Her parents still did morning and evening shifts — which were still stressful to an extent — but having some relief during the day gave them more freedom and Davis more independence than she had before. It was the first step toward handing over the business to Davis.
The next step came when Davis transferred to UC Berkeley and enrolled in the Disabled Student’s Residence Program. The program taught independent living skills, including personal attendant management, to freshmen with disabilities. “The DSRP taught me how to hire, fire and manage attendant care, and was one of the most important things I’ve learned in life,” she says. Unfortunately the program was eliminated last year due to budget cuts.
For Ligia Zuniga, 37, the stress of relying on friends and family after she was paralyzed in a car accident eight years ago also proved difficult. As a C5-6 quad on one side and a C3 quad on the other, Zuniga relied heavily on her mom, children, friends and other family members for her care after she was discharged. Balancing work schedules, her care needs and family dynamics proved too much. “Relationships stay the same, it’s just the circumstances that change,” she says. “And that affects the quality of your care with your family or your spouse or your children.”
Eventually she found somebody for the mornings, which were her tougher shifts. Now she lives with her partner, while regular care attendants come through, and her mom still helps on occasion.
There are more than a few ways to find new attendants. Classifieds, print or online ads, job sites, Facebook walls and groups, word-of-mouth, flyers, and, of course, acquaintances, are all good sources. Davis has had good luck with advertising on Indeed.com. “I posted an ad there and I’m still getting responses, even though I’ve already found somebody,” she says. “These are really short shifts that I thought no one would want, like half hour shifts.”
Davis has quite the list of shifts: two hours for the morning and breakfast, an hour for cooking dinner, another for getting into bed (with slightly longer shifts on shower nights), and an overnight where she is turned once and her attendant stays for around four hours. She gets 283 hours per month from the state, divvied up between nine and 10 hours per day, and she uses every one of them. People want jobs, so even a quick $6 shift can get replies galore when they are put in the right place.
I have a similar deal — several hours in the morning, midday help when I need it, dinner and night routines, and my roommate being on call in case something happens in the middle of the night. Having a plan in case of last minute cancellations or to find backups on short notice is a must. I have a texting group, Davis has a Facebook group just for her attendants, and some people keep a list of vetted people to call. It’s vital to have some sort of a backup plan in case somebody gets sick or needs to head out of town — nobody wants to sleep in their chair or be stuck in bed all day.
Many of us need to track hours to make sure people get paid correctly, whether it’s out of our own pocket or the government’s. Both Davis and I use Microsoft Excel, with some tables and a couple formulas to double-check how many hours somebody has worked in a week or month. It’s even possible to keep a file on the Cloud so you can access it on your phone, because who knows when some random shift will come up or you need to check logistics on the road. Everybody has a strategy that works for them — a sign-in sheet, a Word document, a monthly calendar with puppies on it — and it never hurts to play around and see what works best.
One place you can’t play around is with finances. Zuniga learned that the hard way. Like many quads, she was employed before her accident, financially stable with savings in the bank. Her savings actually impeded her from getting the level of personal attendant care she needs, as she had more than the $2,000 allowed by her state’s asset limit. “Nobody tells you about the money piece,” she says. She later learned that a special needs trust would have enabled her to keep her money and still enroll in In-Home Supportive Services without problems. Instead, Zuniga funded all her care and went bankrupt, her savings vanishing until she qualified for California’s Medicaid program. Today, Zuniga is eligible and enrolled in IHSS and, like Davis, receives the maximum amount of hours and uses all for her care.
The Fuzzy Line
With the logistics out of the way, you can focus on what is often the most difficult aspect of running your new small business — finding the right balance between professionalism and friendship. Most employment is clearly work first and fun second. But with personal care, it can feel like a fuzzy line. After all, with regular jobs, you are often around a group of people in a business setting and at least some managerial structure. With attendant work, though, it’s all one-on-one and it can be hard for things to not get blurry. Davis puts it perfectly, “This is an intimate job and it’s hard to hold a professional relationship with someone who is wiping your butt every day and showering you.”
You might be spending two or three hours together in the morning, in the bathroom or taking a shower or getting dressed or eating breakfast or watching the news or … well, the list goes on. If it’s all work and you don’t get along, that makes for some boring and awkward shifts. If you treat the work lightly and joke around, it may come at the cost of things not getting done. Then, if you become best friends on the job, it can be difficult to hold people accountable out of fear of ruining a friendship. This little conundrum is a tricky balance, to say the least.
Should you decide to hire acquaintances or friends, be prepared: It can end in ruined, or at least diminished, friendships — but other times, it can be just fine. As Davis says, “Sometimes it works and sometimes it doesn’t.”
I’ll be honest, I’ve hired many friends and acquaintances. In doing so, I discovered the value of healthy communication about where things are at on the job, what stresses might be coming up, and establishing boundaries between work and friendship.
A Job First
No matter what, attendant work should be like any other employment — it’s a job first. Many find it helpful to simply have things written down. Davis has a contract that outlines what she expects: If you are running more than 10 minutes late, let her know as soon as possible; if you are going to be taking time off, let her know as soon as possible; and don’t bring in drama. “A lot of it is just basic knowledge, but it’s good to have it on a piece of paper so that they see it and sign it and know what is expected from the job,” she says.
Being specific about what you want and need is critical. “Leg stretch first, then ankle, not the other way around.” “Green cup for my coffee, brown one for the smoothie.” “Make sure you scrub the entire bathroom, especially that one spot on the right-hand corner.” “Tilt the tray up. No, down a little. No, back up. No, tiny bit down. Almost there. Aaaaaaand, good.” This may sound nitpicky, but if you want your life to run the way you’d like, being accurate in your requests is the way to go.
This point was hammered home by attendants I spoke with. “Tell us why you want things done a certain way,” says Hannah Karpilow. Karpilow has been working as a personal care attendant for the last 35 years, and, like many, derives great satisfaction from the job. “I like feeling appreciated and useful and helping people, and it just feels natural,” she told me. She says she would rather be doing helpful things than just sitting around on the clock. Even if a checklist is all the way done, she usually looks for a task or two that could be completed before she leaves.
While this all may sound easy in concept, feelings of frustration, resentment, and even passive-aggressive anger can develop. I’ve certainly felt the need to snap at guys in my crew, then realized I have a responsibility in the workplace to stay calm, be a constructive manager, and keep a comfortable working environment. Respectful language, positive feedback and active direction can guide attendants through the process to finish tasks just the way I want. It’s also good to give feedback if an attendant is being unhealthy in their work or communication. “In my experience, keeping an open mind has helped me, and seeing other people as human beings always helps,” says Zuniga.
It’s Totally Doable
Managing the caregivers you need can seem like an overwhelming task, but as Davis and Zuniga and others have learned, it is totally doable. After her tough time adjusting to life as a quad, Zuniga built connections with other people with disabilities to find out how to do things better. “There’s no easy transition into this type of life,” she says. “Be open to as much advice as you can and to different ways to look for people to hire.” The ideas and steps in this article will help, but don’t stop here. The disability community has untold knowledge about how to live independently, from finances to benefits to transit and personal care. Seek it out.
With a respectful approach, attention to detail and some hard work, you can develop your small personal care business into a thriving success that ensures you get the care you need and the happiness you deserve.