Diane Wilush, president and CEO of the United Cerebral Palsy (UCP) groups in Georgia and South Carolina, isn’t big on work/life balance, at least not on her own work/life. Wilush begins her day at 4 a.m., skips lunch, and grabs about six hours of non-REM sleep each night. The schedule is necessary, she says, because she’s passionate about helping people with developmental and intellectual disabilities. And there’s so much work, still, to be done.
Wilush, 64, grew up in Ridgefield, Conn. and earned a social work degree from Florida Atlantic University. She joined UCP of Georgia in 1994, overseeing the group’s growth from a small nonprofit serving the Atlanta area to a statewide organization providing services to more than 500 people. Nine years later, Wilush established the UCP of South Carolina. Nationally, Wilush serves as chair of the UCP Board of Trustees and sits on the 501(c) Agencies Trust Board of Trustees.
Wilush now lives in Marietta, Georgia with her husband of 40 years, Joe. During an interview with 501c.com, Wilush talked about the challenges of running two nonprofit organizations with about 700 employees, and about how people with disabilities still struggle to be fully integrated into society.
Why have you devoted your professional life to people with cerebral palsy?
It’s a common mistake, but UCP actually provides support and services for people with all types of developmental and intellectual disabilities including people with autism and Down syndrome.
I’ve been interested in people with differences since I was in first grade, and there was a girl I played with who had Down Syndrome. I didn’t have the words to identify the difference, but always thought she was neat. In third grade, we had a boy in the class who was blind and used a Braille typewriter. I was interested in that kid.
Mainstreaming kids with disabilities was unusual when you were a child.
Ridgefield, this little Connecticut town where I grew up, was pretty trailblazing. At that time, most kids with disabilities were institutionalized. There was no mandate for public education. There was no special ed when I went to school.
There has been a sea change in the philosophy. Professionally, I came up at the beginning of deinstitutionalization. Kids with disabilities who are in public school now are, on the whole, more included in a typical classroom. Schools make a more informed and concerted effort to create opportunities. I can see generational changes, especially in what families expect a young person’s life to be in the future.
But, there’s still segregation for people with disabilities. People with developmental and intellectual disabilities are still marginalized. Helping them to become part of the community is our next frontier.
There will be a time when people with disabilities are seen as just another citizen. I think expectations are rising and changing. But it takes a long time.
What can speed up that acceptance?
It’s more common to see a person with a disability out in the world. When I was growing up, it was not that way. Now, there are TV shows about people with disabilities. There are Target ads with people in wheelchairs.
Whenever there are people in the public eye who have disabilities, people who are achieving recognition, it helps educate the public.
What’s a typical day for you?
I start working from home at 4 or 5 in the morning. I catch up on email and try to get into the office by 7.
A large measure of our work is 24/7 residential care in small group homes. Part of our responsibility is seeing to all manner of medical care, and it’s always a struggle to find doctors who have enough understanding to provide primary care to the people we support. So, I’m working on collecting data and looking at state policies that impact medical care.
I don’t go to lunch. I know, it’s a horrible habit. But I stay in the office until about 3, when I get home and work for another couple of hours.
A good night’s sleep would be six hours. I know, it’s crazy. But it is what it is.
Don’t you believe in work/life balance?
I love my work and feel very passionate about it. It’s not like work to me.
When I was younger and juggling kid activities, I manipulated my work around when I had to take my kid to something. My son is grown now, and I’m in a different place in my life. But I don’t expect anybody to work like I work.
Turnover is a big challenge for any company. What do you do to keep good employees?
I’ve got about 450 employees who do the hands-on work of providing care for people. Staff turnover is one of my biggest struggles. In fact, retaining that support workforce is a national problem.
These are entry level jobs where they bathe, feed, cook and clean for people. It’s a very difficult job, and we’ve got 40% turnover every year, which is below the national average. It’s stunning and our biggest challenge.
We don’t have a boatload of money to pay people. So, we think of ways to stabilize this workforce that are not about money.
We’ve got a person in our HR department who is a go-to person for staff members who, say, need to find childcare, apply for food stamps, or just vent. We’re hopeful that will be a benefit for our employees.
We also do little celebratory things, like recognizing people agency-wide who do cool things. Sometimes we send them little gift cards. And I always write a handwritten note, thanking them. I send it to their homes. It’s very meaningful to the person who gets it.
You’ve worked in the nonprofit world for over 40 years. What have you learned?
Age has helped me moderate my tone. I’m not as in-your-face with people. I’m still pretty direct and assertive, but less edgy. I’ve seen I can get to the same place with a gentler approach.
What keeps you going when you feel tired or discouraged?
I often reflect on what’s been accomplished. That keeps me going and reminds me that the change is slow but steady.
About the Author
Lisa Kaplan Gordon is a veteran content producer, e-book creator, and social media writer with two Pulitzer Prize nominations and three National Headliners Awards. Her writing has appeared in Washingtonian Magazine, Redbook, Yahoo!, AOL Real Estate, AOL Daily Finance, USA Today, and US Weekly, as well as major metro dailies. She writes several times a month for 501c.com.