Episode 13 Transcript
00:15 [Allycia Wolff] Welcome to Focus on the Future, a future planning podcast for caregivers and families supporting people with disabilities. Focus on the Future is a podcast of the Minnesota, a nonprofit organization advocating for people with intellectual and developmental disabilities. My name is Allycia Wolf. I’m an advocate with The Arc Minnesota, and your host and producer for Focus on the Future. In this week’s episode, we’re going to be talking about person-centered planning and person-centered philosophies. This is a topic that is getting a lot of attention right now on disability services as it should. For a long time we have lived in a service-centered world where people with disabilities and families have had to fit into what the service system has had available. Person-centered planning and person-centered philosophies and ways of thinking are changing this and are saying that people with disabilities can live the life of their choice in what makes them happy, while also receiving surfaces and supports from a more formal system. So today we’re gonna talk about that. Before we go into the interview and the conversation for today, I do want to note that The Arc Minnesota, like the world, has been impacted by the Covid-19 and coronavirus pandemic. Our offices are currently closed, so this interview and this episode here is recorded from my home in Minneapolis, Minnesota. You may notice a little difference in the sound quality, so thank you for your patience and understanding and that as we work hard to make sure that the people that we support and serve are safe and healthy, as well as our staff and the people that we work with. So thank you for understanding that. Additionally, if you or your family need any resources about COVID-19, how to explain it, or different community resources and ways to support your family or your loved ones. Please reach out to The Arc Minnesota, or look on our website as we have a lot of information there as well. Best to you as we all work through this time together. One of the things that COVID-19 and this pandemic bring up for almost all of us is a stress and uncertainty so while we wanted to talk about person-centered planning in this episode, given where we are at as a nation and a world we thought that focusing on persons-centeredness and well being would be timely in this episode. We’ve talked about this a few times throughout this podcast. How, when people feel safe and loved and supported and like they’re heard and what they want and what their hopes and their dreams are, people live better lives by extension. Then, when people feel good, when people feel healthy, physically, mentally, spiritually, that also leads to a better life. So being person-centered is really all of those things. Coming together on a day-to-day basis, person-centered thinking and person-centered philosophies is a way of being. They’re things and practices that we do on a day to day basis in our own lives. It looks like us asking how we want our day to look and what we want our future to hold. When we are supporting people with disabilities, acting in the person-centered way means always asking what a person wants before taking any steps forward. What a person wants may also come with additional supports. It may come with the need for some creativity, but being person-centered on a day to day basis is a way of being that we can all practice. And then person-centered planning is an intentional, facilitated conversation. It’s usually led by a professional, not a part of somebody’s network, and it starts with what a person hopes for their future, what they want. And it is a strength-based conversation to really put some intentional planning into place. This person-centered planning process really addresses what kind of support needs a person needs and also what the overall network needs to be able to really support a person. Acting with a person-centered mindset is something that we, as professionals and caregivers, try to do on a day-to-day basis. I have many people ask me often when is a good time to do a person-centered planning meeting? When’s a good time to have that facilitated conversation? And I say, always, really taking a step back and thinking about your life is, I think, always a valuable and beneficial process. But I would say especially person-centered planning can be important when people are going through a transition or something new is happening in their life, where there’s a big change coming up. It can also be a valuable process when people just want to feel heard and acknowledged overall, bringing it back to that concept of general overall well-being. We feel better, and we feel more supported, when we feel like the people in our lives hear our concerns and are there to support us. When I was doing research for this episode of the podcast, I came across an episode of the LOMAH Special Needs Podcast focused on person-centered planning. Episode 49 of the LOMAH Special Needs Podcast, again, talks about person-centered planning. I would highly recommend this episode of the LOMAH special needs podcast and the podcast overall, really. The host is a woman who is navigating her way through learning disability services because she is a mom of a child with a disability. In this episode, specifically on person-centered planning does a great job of explaining what planning is, why it’s important and why it’s different than all of the other ways that she’s been supporting her daughter throughout her life to day. I’m going to be featuring an interview with Dan Baker. He works currently with the Department of Human Services, and he has worked with people with disabilities throughout his lifetime. He and I are going to discuss some important person-centered philosophy concepts and what it means to be person-centered in our careers. So this is a little bit of a unique perspective, and I hope you enjoy. Hey, Dan, welcome to the podcast.
07:25 [Dan Baker] Thank you so much for the invitation. It’s an honor to be on the podcast with you guys.
07:30 [Allycia Wolff] Great to have you here. I would love if you could introduce yourself quick to the audience.
07:36 [Dan Baker] Absolutely. My name is Dan Baker. I’m with the Minnesota Department of Human Services. I have a doctorate in educational psychology from the University of Minnesota, and I’m certified as a clinician through NADD, the National Association of Dual Diagnosis.
07:50 [Allycia Wolff] Great. And you’ve worked a lot and supported people with disabilities throughout your career, right?
07:56 [Dan Baker] Absolutely. I’ve worked in everything from educational programs to rec programs and, of course, residential and vocational programs for people with disabilities. I’ve also helped many people with disabilities find the jobs of their dreams.
08:11 [Allycia Wolff] And what is it that your that your career looks like? Currently what are you doing on like a day-to-day basis that that ignites your passion?
08:19 [Dan Baker] Well, one of the things I love to do is see that people with disabilities get the exact supports that are designed for them and tailored for them, helping open doors to new activities, new things they would love to do, find their dreams and also find ways to make their days better, for example, by handling stress better and by building the ability to cope with daily frustrations such as being shut away due to COVID-19.
08:49 [Allycia Wolff] Yes, we’re all experiencing a lot of stress with right now. You do a brilliant job trying to make disability services fit people individually, instead of trying to make people bend to fit what is currently available in the system. You do a really great job of speaking to that.
09:11 [Dan Baker] Well, thank you. Everybody has their unique set of interests. The unique set of skills and services always need to be tailored around them, whether it’s building an IEP for a young person so that they can learn about what the world of work really means, or designing a residential program for somebody. So their lives are filled with meaning and meaningful activities.
09:36 [Allycia Wolff] Now, you just mentioned an IEP now an IEP, individualized education plan, is something that the school and teachers help people create. So they work with a student. They see what kind of supports they need, maybe what deficits they have. And then they worked to put a plan into place and help a student succeed in school. It’s what an IEP basically is, right? And so you could be person-centered in an IEP. But a person-centered plan is a separate process that doesn’t have any preconceived notions of what those goals should be. And so often, when I’m facilitating these person-centered planning meetings, I ask people, What are you were overall dreams and what is your vision for your life. And then from there, once we create the idea of a vision and a dream and what people really want outside of any context of what currently exists, people then are able to make smaller goals and objectives.
10:40 [Dan Baker] Absolutely. We all have objectives which I consider to be the little day to day things. For example, I’ve been running more lately, and my objective would be to run a little bit further. That’s a good thing to have, and I like to have little goals that I can accomplish. But dreams and vision are so much more important. We all need a vision in our life so that we can find meaning. Vision to me is what I would like my life to be like in the future. Vision to me is more around the overarching principles which I want for defining my life. And then dreams are the lofty aspirations we may someday have for me. Many of the people I work with struggle to identify what their vision is. They struggle to figure out what their dreams might be because they simply haven’t had the necessary life experiences. And I see often part of my role in supporting people is to help people figure out what their vision might be. What is a dream they might have? The example we always give is if I’ve only tasted strawberry ice cream. I might not know that vanilla is really my favorite. So I see my job in people’s lives is helping broaden an understanding of what people can do. What are the different types of jobs that are out there? I spent much of my life working with transition age youth. That’s youth who are 14 up through the end of their school days. And many young people have gone to one job site or zero, or they’ve gone to two job sites. And what I’ve often worked with schools about is get those young people into many, many different types of jobs and just don’t just take them out for a quick field trip but have actual lesson plans so that young person understands and can reflect on what they might like and what they might not like. Same for adults with disabilities who are thinking about what different types of homes they might have. Same for adults with disabilities who are thinking about what different types of jobs they might want. But even more importantly, what type of lifestyle things would they like. What type of recreational activities? Recreational activities, our hobbies, our passions, are so important in everybody’s life. And I would argue that those things are a gigantic part of mental wellness, too. So for me, many people just haven’t had the life experiences to figure out what their vision is for their future or what dreams they might like for what might happen someday.
13:51 [Allycia Wolff] A lot of times when I’m working with families directly and people directly, it’s hard to think about what the future can hold because there’s a lot of uncertainty and what it can be. And so when I’m facilitating person-centered planning meetings, I ask people to take a step back and think about a world that is perfect. And that’s a hard thing to do sometimes because it’s hard to dream outside of the context of what currently exists. But it’s important also because if we’re able to dream lofty goals then we’re not gonna be held back by what the system currently says that we’re able to do. I always use the example of, like, Lyft and Uber. If you would have told me 10 years ago that I could call a car on my phone, that was a computer and a phone and like a 1,000,000 different things, I could call a car and I would feel safe in having somebody pick me up, I don’t know if I would fully believe you. But somebody dreamt it and somebody created it and made it happen.
15:00 [Dan Baker] Absolutely. In terms of looking at what possible things could occur to me, the sky is always the limit. The danger for that, of course, is that people may also not understand what it will take to get there. And the what it will take to get there is often the structure for the goals that we create. How will I teach somebody to use Uber or use Lyft? How will I teach somebody how to use a prepaid debit card? I often think that we waste a lot of time teaching people about coins because if it’s gonna take someone a really long time to learn penny nickel dime, I tell you what, I haven’t used a penny a nickel or dime, probably in a year. So as life gets more complex, we have to make sure that people disabilities do not fall behind in the digital divide.
16:07 [Allycia Wolff] Yeah, and the digital world. I mean, just in in the self-quarantine that we’re all experiencing right now, I think that we have all appreciated technology and everything that it has offered to us. You know it presents its own challenge, but it’s also a really wonderful tool that more and more people can use as assistive technology moving forward.
16:31 [Dan Baker] It’s a wonderful tool. It can also be incredibly frustrating. So as part of teaching people how to operate technology, it’s also so important. We teach management of frustration. We teach coping and we teach problem solving. And I know when I’ve worked with many people with disabilities, I’ve spent a lot of time on the what ifs. What will you do if it is out of batteries? What will you do if the device doesn’t operate right now? And people have sometimes criticized me for saying I stress people out. But I’m teaching people how the world really works and it’s critical to work off the stress and the frustration that people experience and prepare people for managing all that type of stuff.
17:28 [Allycia Wolff] And why is that piece so important, specifically for people with intellectual and developmental disabilities?
17:36 [Dan Baker] Well, I would argue it’s important for everybody, but for people with intellectual or developmental disabilities who don’t have coping skills and struggle to manage frustration, what that episode will quickly turn into is some pretty significant problem behavior and some pretty significant challenging behaviour. And when people with disabilities have really bad days just like anybody else, it’s often because something happened that the person had trouble coping with, or found it more frustrating than they could handle.
18:12 [Allycia Wolff] Yeah, I would say also that just like you said that it’s important and an underutilized skill for everybody in our community to be able to better learn how to cope and deal with stress. And I’m sure you would agree, specifically for people with intellectual and developmental disabilities, if you aren’t able to really deal with your own stress in a healthy, productive way, and that comes out as quote unquote behaviours, which is a way that you’re expressing yourself, that can give people, oftentimes a really negative persona to people….to care providers and everything. So I think that it’s very important as a skill for everybody to learn, and especially people that have higher consequences in when negative behavior is displayed.
19:11 [Dan Baker] Without a doubt. For somebody who learns in a typical manner, we can have one bad thing happened and remember, “Oh, I did this and it turned out really badly.” And hopefully we can use that one bad incident to guide our future decisions. We know that many people with intellectual disabilities might not learn quite as easily, and that means we need to teach those things directly. What do you do when you’re stressed? What do you do when you’re frustrated? What do you do when you’re bored? What do you do when something happens that you didn’t expect? For example, my phone didn’t turn on when I thought it would. So I think all of those things need to be taught directly the same way we teach to read a bus schedule, and the same way we teach somebody to make a shopping list for going to the grocery store.
20:07 [Allycia Wolff] Absolutely. And that’s such a key part of person-centered planning. Because when we’re talking about people’s goals and their vision for their future, reality is, is that everybody is gonna need supports along the way. So person-centered planning doesn’t ignore the supports or the help that people need as much as it helps restructure the way that we think about it, and it puts it into a context like you just said. You know, maybe somebody needs more intentional learning opportunities to deal with stress than I, for instance, would. And that’s what makes it person-centered.
20:44 [Dan Baker] I believe that person-centered thinking has completely revolutionized the way we conceptualize supports for people with disabilities, and hopefully someday, the way we think about supports for everybody. We will only get so far by looking at what somebody can’t do. We will get immeasurably further by looking at what people can do. Everybody has things they’re not good at. We don’t need to spend that much time thinking about them. Whether it’s you, I, or a person we support. We get so much further by looking at what somebody’s strengths are. And when we know that somebody has a signature strength, whether it is kindness, whether it is integrity, whether it is curiosity, or whether it is love for other people, by capitalizing on those strengths, we can make somebody’s world so much richer. The old fashioned way of looking at supports for people was you find out what somebody’s not good at, what their disability is or what is wrong, and then you apply an intervention to fix that.
22:11 [Allycia Wolff] Yeah, deficit based planning.
22:15 [Dan Baker] Yeah, that might be good for solving just that one little problem, but it doesn’t help erase supports that will make somebody’s life all that much better. I think we’ve revolutionized the way we do things, and by blending person-centered thinking with good support methods, we can open up a world of new possibilities for everybody who receives supports and ourselves.
22:46 [Allycia Wolff] Yeah, that’s the way that we think about all of our individual lives. You know, when I think about my life, I want to focus on what I’m good at and what I can do. And, of course, I want to address the things that I struggle with, and the supports that I need and what I appreciate about this movement of strength-based planning and person-centered planning, is it reflects more the way that I like to live my life personally.
23:09 [Dan Baker] There’s a classic saying out of supported employment: Nobody ever got a job because of what they can’t do. People get jobs because of what they can do. I would argue that’s true for everything. Nobody ever made a friend because of what they can’t do. Nobody ever found love because of what they can’t do. Nobody ever found a great new hobby they love because of what they can’t do. Good things happen in people’s lives because of what they can do, and we need to array our planning for people around what they can do. We don’t ignore what somebody might need some support in. We don’t make that the sole focus. You know, that reminds me a story of a person I knew and this was an individual who, when he got stressed, he wanted to go for long, vigorous walks. By the way, let me note that that works for lots of different people. And as we think of teaching people to manage stress, going for a nice, vigorous walk is one of your best interventions. So this person lived in an area where going for walks wasn’t exactly a safe as could be, due to traffic, due to all sorts of different factors. So the team supporting him ended up finding a home that was out in more of a rural area. Now I might not like to live in a rural area because I like to have stuff around me, but for him, he could safely walk down farm roads and could de-stress on his own and was able to come back when he felt better. We looked at what worked for him and found a way to build that into an environment that suited him better.
25:11 [Allycia Wolff] So even though where he was living before, there wasn’t anything quote unquote wrong with it, right? Like the place that he was living, that was that was in more of an urban area. There wasn’t anything wrong with it. He wasn’t receiving bad care by any means, but it just didn’t work for him and what he needed and what was most important in his life.
25:29 [Dan Baker] Correct. We know that sometimes when people get upset, they just need some time to themselves. And unfortunately for many of the people we support when an individual gets upset, how we respond is the exact opposite of what works best for the person.
25:51 [Allycia Wolff] Which is exactly why helping people find coping mechanisms and stress reducing techniques that work for them is a really important component of person-centered planning because to be able to live a good life and feel satisfied, you want to feel calmer and happier yourself. So with this in mind, as people are working towards feeling better and more comfortable right now, which is also a part of future planning, it’s feeling good right now because you have to feel good right now to be able to feel good in the future. With that, as people are looking into the future and thinking about that, what they want and what their hopes are, sometimes it’s hard for people to come up with what those ideas even are and what people even want for their future.
26:43 [Dan Baker] We all need something to look forward to. The basic nature of optimism is that you know that good things will happen in the future. In my career, I’ve worked with so many people who don’t feel like there are good things coming down the pike for them. And in those cases, what I’ve done is directly teach people how to look forward to stuff, the idea that right now things might feel a little boring. But there will be good things happening in the future. Of course, that requires there to be things to actually look forward to, and in my career, sometimes I’ve worked with people who really don’t have much to look forward to. So in those cases, what I will do is help people find what are some dreams for fun stuff. You arrange for those things to happen, and then you put them on somebody’s calendar. It can be a print calendar. It could be a phone calendar. It can be a calendar on the wall, but I will physically walk the person over to that calendar or take the phone out and look at the calendar and I’ll say, Hey, right now, you might be a little bored, But I’m Thursday you’re gonna go to the comic book shop or on Friday, your favorite TV show comes on. Or next week, the new season of your favorite show will start and I’ll say, “Let’s practice looking forward to that.” What are you gonna look for in the kind of book shop? What is your favorite comic book you’ve ever found? What do you think’s gonna happen in the new season of your show? Or what happened on last week’s episode that you watched? And you directly teach people how to look forward to something good in the future right now. On this very day as we record this, many of us air frustrated because we can’t go to the gym. We might not even be able to go to work, but we know someday that will pass. That’s how we’re coping. And for people I’ve helped design supports for, I have put that optimism and teaching optimism as an integral part of what I’ve done. We know that people with disabilities are no different than anybody else is. Just the types of support might be different. I am such a believer that mental wellness is what we do. We support people. To be mentally well is the cornerstone of everything we do.
29:50 [Allycia Wolff] Thank you for that, Dan. I would like to ask one last question. And that is, as you’re thinking about person-centered planning and the things that you want to share from your decades of knowledge, is there anything else that you would like to bring forward here in this conversation? Anything to share with people listening?
30:12 [Dan Baker] Yes. Sometimes in our teams we get hung up thinking, “Oh, are we gonna do this or we gonna do that? Are we gonna do the other thing?” We’ve got so many different types of planning and so many different documents. My answer is to do as much as you can and with each of those ways of looking at supporting somebody we’re learning. We’re learning more about the supports that somebody needs, and we use person-centered planning as the way to bring it all together so that we can deeply understand somebody and figure out how to help somebody have the type of life that they want and that works for them. I know there’s a lot of families listening as well, and I also have, when I work with families, I remind everybody that the number one intervention you could do is just to love your kid.
31:15 [Allycia Wolff] It’s an easy one. Thanks, Dan. Thanks for joining us. Thank you so much to Dan Baker for taking time and being patient as we navigated how to record a podcast episode amongst a stay in place order in Minnesota. As you continue to learn more about person-centered philosophies and person-centered practices, I would suggest that you look into the LOMAH Special Needs Podcast Episode 49 as well. Cornell University has some great information on their person-centered planning educational site and The Arc Minnesota also has our Arc guide to person-centered planning. And, as always, please don’t hesitate to call The Arc with any questions. If this episode brought up any questions specifically for myself or another advocate at The Arc, please give us a call at 833.450.1494 The next episode of Focus on the Future will be our last episode in this future planning context. I will be wrapping up the podcast and we will be talking about the future and what is to hold for The Arc Minnesota’s podcast. Focus on the Future is a podcast of The Arc Minnesota. Subscribe to the podcast on your favorite streaming service to stay up to date with the newest episodes. If you’re enjoying, listen, please support the podcast and our mission by donating at thearcminnesota.org/podcast. Our podcast music is composed and recorded by Micah Kadwell. Micah is a talented guitarist from New Brighton, Minnesota, who also has autism. Thank you, Micah. Focus on the Future is a product of The Arc Minnesota, and is produced by a team of wonderful people. Thank you, everyone. And thank you for tuning in. Have a great day. Stay safe. We’ll see you next time.