Shape of Care:  Episode 3 Rick and Tutu

Rick When I was growing up I made deliveries of food to the commissary at an institution for people with developmental disabilities. It was a state institution that became relatively well known as a result of a court case – Willowbrook Developmental Center – and I made regular deliveries there as a teenager. 

That’s Rick Surpin. When Rick was making those deliveries to Willowbrook Developmental Center, the place was a sprawling state-run institution. It took up 300 acres on Staten Island. It was built in the 1930s as a facility to treat children and adults with developmental disabilities. In the early 70s, a young investigative reporter named Geraldo Rivera was contacted by a former doctor from Willowbrook. He told him about the horrific conditions at Willowbrook, so Rivera decided to see for himself, and he went  into the institution with hidden cameras. 

Rivera’s reporting attracted national attention. Some people called Willowbrook a “human warehouse”. Parents of residents sued the state institution. And finally, it was shut down, 15 years after his report. 

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This is The Shape of Care, a podcast that explores the world of caregiving. In this series, we look at who does the caregiving in the U.S., and why we should care about this work. In this episode, Rick Surpin talks about the link between the quality of jobs for home care workers, and the quality of care they provide. We’ll also meet Tutu, a seasoned home care worker who loves supporting frail elders and their families. I’m your host and the creator of this podcast, Mindy Fried. [Again] Here’s Rick Surpin, who delivered food to Willowbrook Developmental Center as a teenager. 

Rick I never forgot how bad the conditions of the place were how brutally people were treated who were residents and how it seemed totally out of control and came to believe that people needed to be living in the community and not in an institution like that. There was no way it seemed to me that there could be a humane institution. 

Rick witnessed something else at Willowbrook that still haunts him: a young man sexually assaulting a young woman.

Rick It was in total public view. And nobody paid attention to it. And I was a teenager that wasn’t used to seeing anything like that. And I wanted to get completely away from it, get my delivery done and get out of there. But it was, I often have nightmares of that. 

And there was something going on to Rick’s personal life. Rick was very close to his father’s sister, who had cerebral palsy. She could still walk independently. But then she was hit by a truck while she was standing on a corner, and she ended up in a wheelchair. As a young boy, Rick thought his father and his aunt had a good relationship.

Rick But as I got older, and a teenager, and she had private conversations with me, she considered him incredibly patronizing and considered him worse than people who didn’t pay attention to her at all. And I loved my dad. I thought he was great. 

Rick came to understand, that as much as he loved his parents, he didn’t always agree with them. And he was moved by what his aunt told him. 

Rick And so, I ended up siding with her, but quietly because I lived in my father’s house, in my mother’s house. 

Rick believed that these two life experiences – witnessing abuse in an institution and observing the conflict between his father and his aunt – led him to the work he’s now been doing for decades.

Rick What I would say today is that what was often talked about as being person-centered is an incredibly difficult thing to do because to see the world through the eyes of the person who was experiencing the care is very, very hard. 

In 1985, Rick founded Cooperative Home Care Associates. It’s a worker-owned company that hires home health aides. They provide care to people who are frail, elderly or disabled. The company started in the Bronx with only 12 employees. Now there are over 2,000 people, serving families in the Bronx, Manhattan, Queens and Brooklyn.

Rick I think because Cooperative Home Care started out with such a focus, initially on the worker, and then we quickly realized that we’re not getting paid to provide a good job for the worker. We’re getting paid to provide good care for our clients. And we had to make that connection between the job having a big impact on the quality of that care. [38:39] [38:44] That frame that I had about my aunt’s story, with my dad, enabled us, I think, to think differently about what this process of care is. 

At Cooperative Home Care, each employee owns one share. And each of them can vote on all policy decisions.

Rick means that workers control the company; they get to decide on wages and benefits. They get to decide how to allocate the profit or surplus, meaning that it could go into increased wages and benefits, it could go into dividends for worker owners. They get to decide if management isn’t doing a good job to not have them anymore. 

Rick says this model leads to workers feeling more committed to their jobs.

Rick We feel a lot better when we’re being paid well, we have a lot less problems to worry about when we’re well-paid and have stable employment. We are able to do a lot more in our families when we are not depressed, our psychology is something totally different than when you’re struggling and you don’t have work or you have intermittent work. 

It’s all connected. The wages workers earn, and the quality of their work experience, affects their attachment to the job. And that affects the care they provide to their clients.

Rick If you’re talking about your kids and you can’t put regular food on the table, if you’re talking about your hours of work aren’t enough and you’re thinking about leaving. Well, the client is often trying to be helpful, but they’re on the other end of needing care and they worry about what’s the impact, ‘are you going to leave me,’ the client, ‘and go work someplace else?

According to the Bureau of Labor Statistics, home care workers earn around 10-66 cents an hour. Working in fast food pays more than working to provide care to people in need. So it’s not surprising that the annual turnover rate for home care workers is over sixty percent.  

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Tutu My real name is Ayesha Sharif. But everybody call me Tutu. Tutu is my nickname. 

Meet Tutu. Tutu’s from Guinea in West Africa.  And she’s been providing care to elders and their families for over 20 years. At first, she worked for a home care agency. She got training and earned a certificate. Now she runs her own home care business. 

Tutu I’m a caregiver and I love to give care. I love to interact with family, good families. I got a lot of connection today because of this job. Those family is like part of my family. I love them dearly and they love me, too. With respect. They respect me, I respect them. Yeah.

Like many immigrants, Tutu came to the US hoping for a better life.

Tutu So I was happy to come here because I lost my first husband. So I have two children. I say to myself “let me go to America and I go to school.

Tutu expected that she would first go to school to learn English. Instead, she ended up going to work in a factory. Then the factory moved to Mexico and Tutu needed to find another job. One of her nieces told her about live-in care work. 

Tutu So she took me to the agency I applied as a homemaker. That’s how I was introduced to the job. 

For a while, Tutu lived with families with young children. She was cooking, cleaning, taking care of the kids. And she felt overwhelmed. Then she got her first job caring for an elderly woman. 

Tutu Well, it was nice, I like it because the lady needed the help and I could give that to her. That make me happy. 

Tutu lived with this woman for six years. And when the woman died, it hit Tutu really hard.

Tutu Anytime they die, I don’t want to cry. it’s like I lost one of my family member. Yeah, I cry, because anytime they die I’m right there at the end. When she died I said to myself, no, no more no more I’m not going to do this no more because it was so touching. Then, when I think about it, I say, but somebody have to do the job, why not, and I’ll go back. 

There’s a reason Tutu loves the job so much.

Tutu Because my mom died when I was very little. My oldest sister and my mom family, they took good care of us. But I always miss one thing. Because I didn’t take care of my mother. So I used to be very good with my aunts. Because my grandmother have five daughters. So all of them passed away. So when I came here, I start taking care of people. Anytime. I’m taking care of like a woman, in my head I’m taking care of my mother.  If he’s a guy he’s like my father. 

And when Tutu’s taking care of a frail, elderly client, she feels like she’s part of the family.

Tutu You know, when I’m doing the job I enjoy it, I enjoy it, especially I work with family. The family need you and the patients need you. Sometimes it’s tough for the family. I’m not caring only for the patients I’m caring for the patients and the family, too, because sometimes when the family come they heartbroken. You have to be there for them. You have to listen. You have to have compassion, love, you know. I don’t work just to work and get the money and go No. I work from my heart. I can’t do half way, I have to do exactly like the way I take care of myself because they are human beings. And the family call me to come help them in a way to represent them because they are so busy, they can’t be there for them. So I have to be there for their parents. 

There can also be a downside, Tutu says she’s had clients who have treated her disrespectfully. 

Tutu But when they treat me bad, I know they’re sick. [12:02] [13:01] I don’t take that personally because most of the time they are sick, because some of them they will tell you that after five minute they will cry. They will hug you, say I’m sorry. So if I have to take that seriously, I wouldn’t do the job. [13:19][12:10] Sometimes when I see I’m getting a little bit upset, I’ll back up, walk away for five minute, drink water, and come back. 

As an experienced independent provider, Tutu feels comfortable negotiating relationships with her clients. When she worked for a home care agency, they would intervene if there was a problem. Tutu found this helpful. Rick Surpin of Cooperative Home Care, says the agency plays an active role in supporting positive relationships between clients and home care workers. But sometimes, there are problems. He told me the story of one situation with a home care worker where the agency had to intervene. 

Rick She did really well in the home because she was so engaging and when it didn’t work it was because she was treated as a maid. She grew up in the Jim Crow South and she was Black and there are places where she did incredibly well. And there are homes where it didn’t work and she had to go. So compatibility and understanding that is a really big issue in turnover. 

In difficult situations, the agency has the option of moving the worker to another home or making the job short term. Rick says that what’s important is supporting both the worker and the family.

Rick So there are a lot of variations on this theme, but we’re first trying to intervene at the family level. 

Tutu says there are other advantages to being part of a home care agency.

Tutu When you work for an agency, it’s good, too, because, when one client die, it would be easier for you to get the next one. But when you work as a private aide for yourself, is a little bit tougher, because if one dies sometimes it take you time to get another one. 

Tutu’s referrals come from a variety of places. A lot of her jobs come through word-of-mouth. And she even gets referrals from home care agencies. When Tutu is hired to provide round-the-clock care, she brings her sister and friends on board to work with her.

Tutu Like you hire me to take care of your dad, then, if the job is more demanding, a lot of hours, I’ll ask one of my family member, who doing the same job as me, they have the certificate to come help me. We work together. All my client the family, they always say, ‘Tutu, thank you so much. Without you, we don’t have no life. Thank you.

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Do you have a caregiving story to share? A question about navigating the care system? We’d love to hear from you. Our phone number is: 6-1-7-600-87-90, that’s 6-1-7-6-0-0-8-7-9-0 or e-mail us: at contact@the-shape-of-care-dot-org. We’ll try to get the answers and include them in Episode 6 of the series. You can learn more about this series: connect with us on Facebook, Twitter and Instagram @the-shape-of-care. You can find out more about the people we’ve interviewed, read The Shape of Care Blog and see lots of caregiving resources at the-shape-of-care-dot-org.  This project has been a labor of love, with the support of friends and family. If you like what you’re hearing, please support The Shape of Care financially at the-shape-of-care-dot-org.

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On the next episode of The Shape of Care, we’ll hear how a woman is coping with her wife’s illness.

Laura Barr I realized early on that, knowing myself, I just couldn’t allow this to be terrible. Because I couldn’t handle it if it was, I couldn’t handle it if it was just sad and really hard, cause I’m just not built that way, you know. So, I pretty much decided it was going to be as good as it possibly could.

The Shape of Care is produced at Whiskey Lane Productions in West Roxbury, Massachusetts. Helen Barrington is the Executive Producer; the mix engineer is James Donahue; and our assistant producer is Alex Birch. Special thanks to podcast advisor, Lisa Mullins. Sarah Wasko created our logo; Kate Krosschell developed our marketing plan; and Maggie Taylor is our marketing consultant. Our theme music is “Break Out” written by Josh Rosen. He performs his composition on piano, with Stan Strickland on sax and percussion. Other music in this episode is by Blue Dot Sessions. I’m your host and the creator of this podcast, Mindy Fried. See you next week.

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