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Carolyn Lewis and Sheila Artis on Self Directed Supports: 'How do You Quit Someone's Life?'

Carolyn Lewis, left, wears a black, white and gray striped shirt and smiles into the camera. Sheila Artis, right, wears a green polo shirt and smiles broadly.
Rebecca Smith
/
KBIA

Carolyn Lewis lives in Audrain County, Missouri. She has worked for a man in Audrain County for ten years through the Missouri Department of Mental Health’s Self Directed Supports program.

She spoke with her cousin, Sheila Artis, about some of the struggles she has faced while working with this program – like lack of benefits and raises throughout the years.

The man she works for also received a letter in the mail earlier this month letting them know that, following state budget restrictions, the program’s individual budget allocations had been adjusted to reflect a 2.82 percent budget cut.

Carolyn also spoke about her fears going forward – for herself, her employer and this program - as future Missouri budget cuts loom.

Missouri Health Talks gathers Missourians’ stories of access to healthcare in their own words. You can view more conversations at missourihealthtalks.org

Carolyn: So you mean to tell me that if I would have went to McDonald's, I know I would have at least gotten a penny [raise] in ten years.

Sheila:  And no benefits.

Carolyn:  And no benefits. I have no sick leave. No vacation.

Sheila: No holidays. 

Carolyn: No holidays. Nothing. You just get point blank your pay. You get no overtime. No nothing. 

How is it that you say that this is a program that you want to see succeed? You're not setting it up for success when it can't compete. And it's not to say that working at McDonalds or anything is below anyone. That's not what I'm talking about, but here it is, I'm talking a life.

Carolyn:  What is supposed to be the entities to keep good help? What are the things that keep people there to be able to have quality care? How is it that you say that you want people to have quality care, but yet you offered no benefits. 

Like I said, no sick leave. No holiday. I mean it's nothing. No 401k. No opportunities for nothing. And to me that speaks volumes about the people that you are providing these services for - they are worth having - to be able to hire competent people to be able to work for them and to be able to compensate the people that are working for them.

Devil's advocate, I could leave, but what happens to him? What happens to him? 

I look at the news every day and I'm in a panic. When I see them talking about the [budget] cuts - because I know that if they cut something, that could be my job.

And I'm sure the average person would say, "You're crazy. I would've left a long time ago." But to me I wouldn't be quitting the state. I'm not quitting Self-Directed Services. I'm quitting someone's life. And how do you quit someone's life? 

"Oh, you're not worthy of taking and having care."

Carolyn:  How many people are not saying anything - like I did for nine, ten years? How many people are not getting the care that they could be getting because someone's looking - "Why would I take this job? It's not paying and I'm never going to get anything?" 

No matter how hard I work. No matter how much I do - I'm never going to get anything.

I don't get health insurance. I don't get holiday pay. I don't get sick leave. I don't give vacation. I get nothing. 

I qualify for [Medicaid] through the state, which is ironic that you work through the same system. It seems like that you would want the people that work in that system be able to make more than being qualified for the system.

I will tell you what I make an hour. I make $14 and that's it, and my taxes are being taken out. That is it. There's no 401k. There's no nothing. I have worked on Christmas, New Year's, every holiday, because a person's life does not stop.

Rebecca Smith is an award-winning reporter and producer for the KBIA Health & Wealth Desk. Born and raised outside of Rolla, Missouri, she has a passion for diving into often overlooked issues that affect the rural populations of her state – especially stories that broaden people’s perception of “rural” life.
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