ARISE - EFR
The theme of the podcast is independent living and advocacy for people with disabilities.
ARISE - EFR
Navigating Life with Lawrence
In this episode of the ARISE-EFR podcast, host Bruce Drake talks with Sue Stalker, a Direct Support Professional (DSP) with 15 years of experience, about her longtime partnership with Lawrence. They discuss how Sue became Lawrence’s DSP, the trust and consistency that have held their relationship together, and her role in supporting his daily life—especially in helping him make healthier choices, participate in community activities, volunteer, and explore new possibilities like independent living. Sue also reflects on life planning, goal-setting, and the deep satisfaction and challenges in her work.
This is the Arise Exceptional Family Resources podcast, with your host, ceo, bruce Drake.
Speaker 2:Hi everyone. I'm Bruce Drake, the CEO at Arise and Exceptional Family Resources, and I'm your host for today's Exceptional Talk on Disabilities. I'm really excited today because we're gonna be joined by our very own Sue Stalker, who's a direct support professional at Arise and Exceptional Family Resources. Welcome, Sue. Good morning. So, Sue, why don't you start off by telling everybody a little bit about yourself?
Speaker 3:I have worked at Arise EFR for 15 years with the same individual. We've come a long way.
Speaker 2:So before you started working at Arise EFR, what did you do?
Speaker 3:I worked for Upstate Medical.
Speaker 2:Okay, what did you do there?
Speaker 3:I had telecommunications so I did all the hospital paging, emergency paging.
Speaker 2:And how long were you at the Upstate?
Speaker 3:20 years.
Speaker 2:Okay. So at some point you decide you're going to leave Upstate Hospital and you think I'm going to be a direct support professional. So how does that tell us your origin story? How did this all start.
Speaker 3:What happened was a friend of mine was his DSP.
Speaker 2:Okay.
Speaker 3:And said to me that he was leaving. And he said you know, you know him so well. I think you'd do very well with him and, uh, and what?
Speaker 2:was it about you that thought would make you a good DSP, and why don't you just give us your, the person that you work with, what's his first name, cause I think we'll be talking about him a lot?
Speaker 3:Lawrence, lawrence, all right.
Speaker 2:So so what was about you that made your friend think that you would be good to work with Lawrence?
Speaker 3:He's a lot of fun and he just needed some direction, and also being consistent with him has been a big big thing for him.
Speaker 2:So that's 15 years ago. So I'm going to draw down on your memory a little bit. So at some point, this person who knows both you and Lawrence thinks that you'll be a good fit together. So you decide. You know what. I'm going to give this a try. What was that first meeting like?
Speaker 3:I was a little surprised at myself because it wasn't a field I had went to when I was a kid. I worked the summer job programs and I would go work at Syracuse Developmental Center or group homes and take people in the community. So I had a taste for it always. But I just enjoyed his company and I thought, well, I'll give it a try.
Speaker 2:Great. So you have your first meeting and 15 years later, you're still working together.
Speaker 3:We still are.
Speaker 2:Had you, other than the working in the summer programs, had you had any interactions or any relationships with people with a disability? I had not, no, no, okay, were you nervous at all?
Speaker 3:No.
Speaker 2:No, just because why.
Speaker 3:I just felt when I was comfortable with him, he seemed comfortable with me and I always follow through with him and whatever I tell him we're going to do, we do.
Speaker 2:Okay.
Speaker 3:And I think he likes that.
Speaker 2:Okay. So when you say, whenever I tell him what we're going to do, we do, do you mean that you tell him what we're doing? Or you mean that once you make a commitment, you stand by?
Speaker 3:once I make the commitment and or we talk about what is going to, what we're going to do that day or coming up, then we do it, we, and I try not to ever change it okay and I think he enjoys that great.
Speaker 2:So he he's someone who likes structure in his life very much. Do you need structure in your life sometimes? Okay, that's a fair question, all right, so why don't you tell us what a typical day looks like? Well, first, how frequently do you work with Lawrence? 20 hours per week? 20 hours per week, yes, and who decides when you're going to be working with Lawrence and who decides when you're not?
Speaker 3:He does, or if, where we volunteer, there's certain days that they need someone, okay we do it that way, or whatever's going on in the community.
Speaker 2:Okay. So why don't you tell us a little bit about a typical day?
Speaker 3:Well, I go to his house and pick him up.
Speaker 2:Okay.
Speaker 3:And then we go out in the community. Wherever we're going. He loves to go out to eat and shopping. Okay, and he's getting better at he's having to make healthier choices.
Speaker 2:You mean in regards to what he's eating, and whether or not he's exercised, so is he getting a little bit older. Is that what's happening? Like all of us, we all have to make better choices.
Speaker 3:That too he looks 19, but he's 35.
Speaker 2:Okay, 36 now Okay.
Speaker 3:But going out in the community and, like when he volunteers at Webster Pond, he likes feeding the ducks. He walks around, feeds lettuce, waits on people, he gets to fish and then they've given him a lot of benefits as well, well, we can get back to that in a second.
Speaker 2:But so when you say Lawrence has to make better choices, right? So who's telling Lawrence he has to make better choices?
Speaker 3:The doctor.
Speaker 2:The doctor. So he's going to his primary physician and you know, I know Lawrence a little bit and he's saying you know what, lawrence, maybe you know blood pressure is high or your weight's a little bit higher. How are you supporting Lawrence to make better choices? What is your role in that?
Speaker 3:When we're at Wegmans we ask questions or helping him make a list before shopping.
Speaker 2:Okay.
Speaker 3:And he's very good about he likes change and he doesn't mind that. Okay, so it's been good about he likes change and he doesn't mind that. Okay, so it's been good.
Speaker 2:Okay. So what other things are you supporting him to do in making these choices? So is the change he has to make that he has to lose a little bit of weight or he just has to eat healthier? Just maintaining it? Just maintain his weight, yes, so you're sitting down with him beforehand, you're creating lists. We do that a lot Healthy choices. Down with him beforehand, you're creating lists. We do that a lot healthy choices. What about right? So I? There's been times in my life where my doctor has told me I need to drop a couple of pounds and for the most part, I'll be good with it, but then there are just days where I'm just like you know what? I don't feel like this today. I imagine lawrence has similar days. So how do you handle that?
Speaker 3:sometimes he surprises me because we'll be places and he's offered things and he realizes that he needs to step back a bit and I tell him give and take, you know yeah.
Speaker 2:So what is your role on the days when he doesn't feel like following his diet? Are you the food warden and you're supposed to say no, you can't have that? How does that interact?
Speaker 3:He'll kind of answer the question himself which is nice. He'll say oh, I better not have regular soda, I better have diet soda, and I'm not going to have that.
Speaker 2:Right. So, other than eating healthier or living a healthier lifestyle, what are some of the other things that Lawrence is working on?
Speaker 3:We volunteering, we go bowling, we volunteer at a few different places at the church.
Speaker 2:Yeah.
Speaker 3:Also at Webster pond.
Speaker 2:Okay.
Speaker 3:And um, he likes to go shopping and swimming. We've done a lot this summer.
Speaker 2:So, as the DSP, um, what is your responsibility in regards to planning or developing a plan for Lawrence and then documenting that plan? How does that work?
Speaker 3:We plan a lot about what's going on, and especially whatever events are going on at EFR.
Speaker 1:Okay.
Speaker 3:Because, as you know, we participate in the Fun Fridays and the Fantastic Fridays and he loves that a lot. He looks forward to it. There's so much to do and activities all the time, so he enjoys that.
Speaker 2:So, as a DSP, I imagine you're reviewing Lawrence's life plan. Yes, Right, and what's the information that you find inside the life plan that's meaningful to you and to Lawrence as you plan it, as you help him? Plan his days meaningful to you and to Lawrence, as you, plan it, as you help them plan his days.
Speaker 3:They're very helpful because the only goal that changed recently was the diet. Other than that, it's about using good manners, about not repeating the same subjects, stuff like that. We work on all different kinds of things.
Speaker 2:It can just be greetings to people and stuff like that. So when you say he's working on these things, are these things that he's chosen that he wants to work on, or are these things that someone else has chosen for him?
Speaker 3:When we've had the meetings they are things, yes they are talked about at that time, or it's been said to him do you want to work on that, or do you want to work on whatever?
Speaker 2:So people who aren't familiar. So life plan meetings are things that happen twice a year with an individual and what we call their circle of support. So it wouldn't be unusual for Lawrence's care manager to be there. It wouldn't be unusual for any family that Lawrence wanted to invite. I know I've met Lawrence's grandmother recently at a picnic on Tuesday.
Speaker 2:I know he also has a sister. It wouldn't be unusual for a DSP or any service providers to be there, and that's the place where people are asking Lawrence what he wants to work on and helping him develop a plan. So you've had 15 years with Lawrence. Have you worked with anybody else? No, no, it's just been Lawrence all the time Just been. Lawrence, that's fantastic. You must have grown very close over the course of time.
Speaker 3:I enjoy him and I think he enjoys being with me and he trusts me a lot, and so he's had a lot of inconsistencies and so I think the more I keep my word with him and we do what we talk about, then he's the same.
Speaker 2:That's excellent.
Speaker 3:I laugh because if his family makes him mad, he'll go. I'm going to call Sue.
Speaker 2:Now people should know. I think it was in 2023 that Sue was elected the day service provider of the year, dsp of the year. So out of 20,000 potential applicants, sue was one of six people selected across New York State. So when she says, when she talks about the job and the things that she's doing right, she comes with a little bit of experience. Thank you, you're welcome. So why don't you tell us about a success story with Lawrence? Is there something that comes to mind?
Speaker 3:I think again with the health, with the food, because before he would eat a can of corn and you're like you can't do that, you know just stuff like that. I just give him some suggestions and he'll be like you know what. I did it that way and I like when he does that. But he's gotten to go to the camps and that's very important to him?
Speaker 2:What type of camps are there?
Speaker 3:He went to Delta Lake. He went to New Vision.
Speaker 2:Okay.
Speaker 3:And then he goes to a camp related to his church, and Camp Whitman is in Rochester. But that's very important for him. He looks forward to it.
Speaker 2:Are those overnight camps? Yes, and does he do all of those each summer, or does he do one each summer or two each summer?
Speaker 3:He used to start out with one, that's all he had. And then the pond said if you continue volunteering like he always does, then we'll pay for your camp for you.
Speaker 2:So Webster Pond, because he volunteers there, pays his tuition to go to all these camps.
Speaker 3:And he can stay overnight because they changed the camp up at New Vision because it wasn't overnight and they pay the difference so he can spend the night. That's great, because a lot of people just get day camp. Okay, he's got a million-dollar. Smile.
Speaker 2:He does.
Speaker 3:And I enjoy that.
Speaker 2:And he's got a soft easy way about him. Yes yes, so 15 years. I know you're working on him making better decisions. Is there another place where you've seen growth in Lawrence that you feel that you might have had some impact on?
Speaker 3:He's really liked his independence For a while. He's had some struggles where he wants to live and he was raised with his grandma and then he didn't like that anymore and so some, some behaviors in there so he told me that they're moving into a new apartment, or he's moving or he's hoping to move into a new apartment.
Speaker 3:Yes, okay but so what I did was he wanted to go try and I said you know you need some help where you want to go, and he he said no, I know I need somebody to help me. I probably need a roommate too, and I mean mixed feelings from me, but that's his right to be able to try that.
Speaker 2:Right, it's not. It's not our moral compass that we have to operate by it's Lawrence's moral compass.
Speaker 3:Do you?
Speaker 2:struggle with that at all, that when you see him making decisions that you don't necessarily agree with.
Speaker 3:Sometimes he kind of realizes it on his own.
Speaker 2:Yeah.
Speaker 3:You know I'll put both things out there. Yeah, and sometimes he'll go. I agree with you. I mean it just depends on what the subject is. But I made sure like he wanted to sign up for an apartment. So I said to the case manager this is what he would like to do.
Speaker 2:That's great. So you do a wonderful job. You've been recognized across the state for doing a wonderful job. You've been doing it for 15 years. What's the downside of being a DSP?
Speaker 3:I don't really have a downside. I really don't. I love working for Arise EFR now and I like your policies. I like you have open door, open conversations. I feel like I have good support behind me when I need it and I'm a fan big time.
Speaker 2:Excellent. Well, thank you. So that was Sue Stalker. Everybody, ladies and gentlemen, that was Arise and Exceptional Family Resources, dsp. Sue Stalker, as always. Thank you all for listening and we hope you join us next time as well.
Speaker 1:This has been the Arise Exceptional Family Resources podcast with CEO Bruce Drake, recorded and produced at the WCNY Public Broadcasting Studios. For more information, visit our website at contactefrorg. You can also follow us on Facebook. Thank you for listening.