November is Diabetes Awareness Month, a time to share information and inspire action around preventing and managing diabetes. At WILC, our team is dedicated to helping people with disabilities access the tools and resources they need to lead healthier, more independent lives. In this special interview, Joan O’Brien, Outreach Specialist for NY Connects, and Aimee Parks, Director of Regional Resource Programs at WILC, discuss the importance of accessible, quality healthcare. We discuss WILC’s new Diabetes Prevention Program (DPP), designed to empower individuals with developmental disabilities to make informed, lasting changes for their health and well-being.
AUDIO TRANSCRIPTION:
Let’s talk a little bit specifically about the DPP, the Diabetes Prevention Program. Can you tell me a little bit about it? How does it operate? Why is that program specifically important as we talk about health care quality and just advocacy overall at WILC?
Okay, so we at WILC have been offering the DPP program for a number of years, I think it’s almost nine perhaps, through a contract with our state agency. That contract ended and through that contact, I made connections with the CDC and the National Chronic Disease Agency and they threw our name in the hat for this new grant opportunity. It’s funded through Special Olympics, so it’s specifically a program designed for folks with developmental disabilities dealing with diabetes prevention. So somebody can’t come to us with diabetes; we’re trying to head that off at the pass and get them on to a healthier lifestyle.
So we were very happy to be awarded the contract and be included in this. And really, this actually I think is going to be really amazing work that Joan, because Joan is going to be the one leading the groups and doing the actual work, I’m sitting here talking, but it’s another way of giving folks who may not have had a really strong voice in their own health at all, really their entire life, the tools to navigate and advocate for their lifestyle choices. A lot of the folks I think that will be participating live in possible group home settings or more of not an institutional setting, but more of a setting that kind of limits their ability to choose healthy foods, possibly choose when and where and how they can exercise.
Nobody’s probably really talked to them about managing their stress, because everybody has stress, nobody is exempt from that in this world, no matter who you are and what you have going on, there’s stressors in your life. So I think this is really going to be an important program for folks who are identified as possibly having a risk to become diabetic, hence pre-diabetes, and then learning how to manage that and giving them, empowering them really, even if it’s a small piece of their life, they can build off that. And I think that’s really important.
And that’s why I’m excited about this program. But Joan, take it away.
I was really honored that Aimee and our Executive Director, Margaret Nunziato, thought of me. I have extensive background with persons with intellectual disabilities, having worked with them extensively in New York City, and up here, and diabetes, as we know, is a very, very serious, you know, life altering disease that’s affected this country unbelievably. And in my experience, everything that Aimee pointed out is so true. Oftentimes, and it’s changing, but oftentimes, persons living in certain congregate settings or what have you, really don’t have a lot of control, okay, about when they eat and what they’re choosing.
Okay, that being said, I also, Aimee and I have discussed, as she has had a lot of experience as well with persons with IDD, is that oftentimes I find a large, the greater population really has oftentimes an obsession with food. Okay, but unfortunately, it’s not always healthy foods. So I think that there are times when people with intellectual disabilities don’t understand that you can actually replace an unhealthy choice with a healthy choice that tastes good, okay, and is satisfying.
And also, as Aimee mentioned, a huge component of this program is about stress and learning how to manage your stress, because we’ve all heard of the term stress eating, and I think we’ve all done it at some point. So I am extremely excited about this, and I think it’s a program that is very much needed, and I think that it can help a lot of people. I truly believe that. And I don’t know if you’re aware of this, but Aimee educated me on this. My classes do have to have a certain percentage of persons with IDD. However, the whole class doesn’t have to be.
So my, if I had my druthers, and I went to, let’s say, a residential program, I would like the staff that works with some of these people who is pre-diabetic, that is a requirement, to be a part of it, because I think that would be a great way to, you know, continue. So yeah, I’m really excited, Michelle.
And then the support system around them is also aware of contributing factors and ways to prevent. So that’s just as important. It doesn’t put all the onus on the individual, it’s “We’re all considering what decisions should be made,” especially if they’re responsible for, preparing food for example. So…what does or what would a typical DPP program session look like? How does the group operate? What kinds of things do you do? Is it more of a lecture style, or what would you say for that?
Well, you know, initially, we’re going to learn about the people, okay? We’re going to discuss with them the goal of the program. There, it will not be a lecture type program, because I don’t think that, especially for this particular population, that that would work, okay? There is a lot of inclusion in this program, okay? The participants are literally participating in what we’re discussing, giving their feedback, okay? There will be some fun activities, okay? I have not led a class yet, so I can’t go too much into detail, but there will be activities.
So this will not just be a you’re sitting around, you know, a table, so don’t eat chips, you know, have a banana instead, and if you’re feeling stressed out, take a walk. It’s not going to be like that, okay? It is intended to encourage the client to participate. This is their life, and this could be, and I want to stress this with my class, this is empowerment, okay? Changing how you eat to better your life and stave off diabetes is major empowerment, and I want them to feel that, and I want to convey that.
And I can just say, because we have had past groups, you know, not with folks with developmental disabilities, but physical disabilities, and we have seen through those groups friendships form. There’s a lot of group motivation, so, you know, it checks off that social box, too, you know? You’re giving people the opportunity to better their lives in a social environment with people in like situations rooting you on, not just telling you what not to do, but encouraging you to make better choices. I think we could all probably use something like that, so.
Absolutely. And this is knowledge that has been developed to be, you know, be available to folks that may have different learning styles that they’re going to get a workbook so they can reflect back, and it’s something that they can take with them and possibly, you know, talk to their peers about. I love that.
There’s a sense of camaraderie around it, accountability, a shared purpose behind all of it. And I ask this with no insensitivity at all, just really to clarify and out of curiosity, is there any evidence or sense that persons with either physical or intellectual disabilities, are they more at risk for diabetes for any reasons? And if so, could you illuminate that a little bit?
I don’t know statistically, but I do know that a lot of folks with physical disabilities, and there’s a lot of combination between developmental disabilities and physical disabilities, that they’re on a lot of medications sometimes that may increase that just by increasing appetite, decreasing mobility. So, this program also has that component.
So, we may be dealing with folks that are wheelchair utilizers with developmental disabilities. That’s a very common thread that we see in folks. So, when we’re talking about moving your body more, right, to become healthier, to ward off diabetes, we can tailor that to folks who may not be able to stand up and exercise, but there’s lots of other ways we can be moving our bodies.
So, yes, I think there probably is a higher, I don’t know, I can’t be certain, but I would assume that there is a higher level of risk for some folks just for those reasons that I mentioned. Absolutely. Absolutely. And the medication is a huge factor. It can be a huge factor. Yep.
This has…brought a lot of light to what sounds like a really important program and something that could actually be kind of fun for people who participate as well and leave a lasting impact on them! So, I wanted to ask, what would you say to people, whether it’s potential group members for the DPP or loved ones who might be interested in getting their loved ones in this program, what would you say to them to get them interested or get them on track to find the right place and time to get involved? And then kind of a part two to that is, what would you speak towards healthcare as it stands right now for persons with disabilities across the board? Is there a message to the community or the healthcare community at large that you think is important to resonate at this moment?
I think that pretty much everybody that sees their primary care physician one time or another will have an A1c blood draw, and they don’t know what that is. It’s never explained. There’s typically never any follow-up unless that number is high. And that is a huge indicator of pre-diabetes, right?
So, I would say to folks, if you want to be involved, this is not something that you’re signing on the dotted line that you have to participate for 26 weeks, 26 sessions rather. It’s a choice. So, come visit the session zero with Joan. Let Joan tell you about the program. Take that information and digest it for those that may be considering it, whether it be family members or the person themselves.
Healthcare providers, I would love to see some… Obviously, it clicks with doctors that they need to be monitoring the A1c, right? But we also need to be saying, why are you doing that? And some people don’t want to ask those questions. So, could healthcare professionals please elaborate on blood work that’s being done and empower their patients? I mean, they really have a really good opportunity to empower people. And I think because of that rushed sense that you get when you’re at the doctor, that might not be happening.
And that doesn’t just apply to DPP, that applies to diabetes, that applies to everything. I think there needs to be more attention given to not assuming that somebody knows why they’re getting a test done. We always hear, well, don’t be a keyboard diagnosis, right? You don’t want to be going home and looking up A1c or looking up your blood work. Well, how am I supposed to learn if you’re not telling me? So, I hope that answered the question. Yeah, that’s an excellent point because as Aimee pointed out, this is educational. Okay? This is very educational.
So, I would say, come to the first class. Okay, just come. As Aimee said, you know, take what you will with it and see if it’s a good fit for you. But, you know, I would mention that, we all know that diabetes is, it can be preventable, but that it is a very serious illness. And there are ways to empower people to prevent that from happening. And I think when people hear that, and they have that sense of, wow, I’m in control of my own destiny here.
And I would also let them know, Michelle, this is not a lecturing type of class. This is a fully participation, it’s participation oriented, and we’re going to have some activities. We’re going to learn, but we’re also going to have some fun. It’s almost like a fun support group. If that were to exist, I don’t know if that’s the thing, but, you know, that’s the way I see it.
So, do we have dates and location for this, or is that still in the works? Still in the works. So, for now, maybe they would just call WILC or shoot you an email. Absolutely.
Just put their name on a list or something like that. Absolutely. We are now, Aimee and I are now reaching, we’re doing outreach for the program. So, we’re reaching out to, you know, specific, for example, we have a meeting tomorrow with an executive director at one of the ARCs, okay, of MidHudson. So, you know, this, we’re getting the word out that way. Okay? And as time progresses, and we have a little bit more information, perhaps we’ll post it somewhere else as well.
But right now, this is what we’re doing. We’re doing the outreach to get that first class going. What we’re thinking, Michelle, is that, especially for folks within the OPWDD realm of the world, which is typically where folks with developmental disabilities land, because that’s their service system, that perhaps Joan could go to them so that they don’t have to coordinate transportation and do all that stuff that’s, as Joan said, that can be very difficult for folks.
So, we’re trying to make this as easy as possible. So, we’re hoping to possibly host a group within a already existing dayhab with an OPWDD provider so that everybody can just converge in a room that’s participating. They don’t have to get in a van or a bus or a car or anywhere and go anywhere.
Joan’s going to come to you. So, that’s really what we’re hoping. I mean, we can offer it, you know, we certainly could offer a group at Putnam, at the Putnam offices, but then we would have to, you know, worry, are the folks going to be able to get to us? So, Joan’s really going to be, you know, a traveling professional and, you know, make it easy on the person attending.
I’m so glad that you brought that up, Aimee. I didn’t mention that. Yes, Michelle, I will be going to them, okay? My goal is a day habilitation program as opposed to a residential program, only because having worked in that system for so long, I know that when persons get home from their dayhab, okay, oftentimes the last thing they want to do, okay, is participate in anything like this.
They want to go to their rooms, relax, have a snack, you know, and then before you know it, it’s dinner time, you know, and then they have to, you know, and prior to that, they might have to do their laundry. So, I’m really, really hoping that we can incorporate this into a day habilitation sector because they’re already there, okay? They’re already there and oftentimes, in my experience, dayhabs are trying to find recreational ideas. They’re just, they’re looking all over the place to try to find a recreational activity.
Here, I’m going to come to you. You don’t even have to take the residents or the clients out. So, I’m hoping that that will be, for lack of a better word, a good pitch because that’s pretty convenient, you know? They don’t even have to travel.
Aimee, thank you so much for bringing that up. I left that out. Yeah, that’s a really key component.
That’s true outreach and really incredible work. I’m excited to see where it goes. I’m excited to share this with the broader community because I think it’s so important, not just for people with disabilities, but especially and I think the tone of kind of empowerment that you’re bringing to it and fun makes it pretty unique. So, thank you both so much for everything that you do and thanks again for taking the time to speak with me. Absolutely. Thank you for having us.
Thank you for thinking of us. Yes, definitely.
