Episode 1 Transcript
00:00 [music playing]
00:08 [Allycia Wolff] Welcome to Focus on Future, a future planning podcast for caregivers and families supporting people with disabilities. Focus on the Future is a podcast of The Arc Minnesota, a nonprofit advocacy organization working with people with intellectual and developmental disabilities. My name is Allycia Wolff. I’m an advocate with The Arc Minnesota and your host for Focus on the Future. In this week’s episode we will dive into the why’s and how’s of future planning. I will be talking with the Kadwell family from New Brighton, Minnesota. In this episode, they will share the ups and downs of their future planning experience and encourage others to start planning now. Thanks for joining us.
00:45 [music playing]
00:52 [Nicole Kadwell] When you have a child who has a disability, you think that you have to have it all figured out in a matter of a month kind of thing, you know… And it’s okay and it doesn’t have to be scary. You can figure things out, try things out, maybe your child will love it, maybe you’ll all hate it. Hey, but at least you tried. And it’s okay to put yourself out there and it’s okay to have dreams.
01:21 [music playing]
01:29 [Allycia Wolff] Hi, welcome to Focus on the Future. This is the first official episode. In this episode we are going to be talking more in depth about future planning, what it is, how you can start planning and just some overall things to consider as well as why people plan, and then a little bit about The Arc’s services and a family that I interviewed recently to share about their experience and future planning. So usually when families come to us and want to do intentional future planning, it’s for a variety of reasons. Sometimes it can be because something’s happened in their lives and it has brought awareness to the fact that they’re a caregiver and their children will probably outlive them. When we first developed future life options back in 2006, we were hearing a lot of caregivers coming to us and saying, I’m the sole caretaker for my son or daughter with a disability. What happens when I pass away?
02:33 So this was the foundation of our program and we collaborated with different community agencies and an attorney in this area to make sure that our programs were really all encompassing of what a person needed to think about in future planning. So we started working with families to help people create a plan for the future. Legal planning, financial planning, and quality of life planning. All of them have important qualities where if you leave one of those out, the plan isn’t going to be balanced. You need to do the legal planning, like the wills and the trusts, the financial planning, making sure that there’s enough money and resources like government and county resources as well. And then the quality of life planning. You’ve done so much work as a caregiver to make sure that your child is living in good life and you want to make sure that that good life continues regardless of anything that happens with you. And so these three elements really create a sturdy foundation for a future plan. We call it the three legged stool. Without one of those aspects of planning, that stool isn’t going to set up right.
03:49 I’ll describe more about specifically how The Arc helps families when we work with people one-on-one in creating a future plan. But first I wanted to introduce you to the Kadwell family. I started working with the Kadwell family about three or four years ago now, and we met when their son Micah, who has autism, was about to turn 18. And so his family was going to different transition fairs and presentations by The Arc and other organizations to find out more about what it is called, quote unquote educational transition, transitioning from high school to adult life. And so this was where I met the Kadwell families and they are just really incredible people and they ended up enrolling in our FutureLife Options program, which is our all encompassing future planning program. We’ve developed a few different options here at The Arc.
04:44 So if people want to do full future planning, they can do our FutureLife Options program. And if they wanted to just start thinking about the future, we have various self-directed workbooks to do smaller pieces of what we call person-centered planning. Person-centered planning is the idea that people know what they want for their lives and it takes a network to come together with people to really help and think collaboratively about a future. As a part of the future life options program, the Kadwells participated in their person-centered planning meeting with Micah. And at the time he was 17 and he was a senior in high school and he wanted to talk about his future employment and where he was going to live and stuff that he was going to do for fun. And so we talked about all of these different areas and I still remember his meeting because Nicole and Frank, his parents were really intentional with who they invited.
05:44 They invited a music teacher, a few old school teachers. They invited some friends of theirs that also have children with disabilities, and some family members as well. And there were so many people there that loved and appreciated Micah and wanted to help him create a good life forward. And it was just a really awesome meeting because we were able to talk about what Micah wants, but also what kind of support Micah needs and what kind of support Frank and Nicole can use in helping him achieve these goals. And this is really what we want out of future planning and person-centered planning meetings is for people to rally around a person and help them move forward. Because if I think about my life and the things that I like doing, I am a really independent person. I love to do solo backpacking trips and I love to spend full weekends just with me and my dog and, but I also am really, really connected to a network of friends that I have and to a few people, and my life would look drastically different without them.
06:58 And so it doesn’t really make sense to talk about my future, first of all, if I wasn’t part of the conversation, like unfortunately happens with many people with disabilities. But also, it wouldn’t really make sense to talk about my future without the people that meant the most to me. And that’s what was apparent in Micah’s meeting is that his parents were really intentional to bring together people that meant something to him and helped him create a conversation about what his future could look like. Enough of me talking about all this, let’s hear from the Kadwell family and learn from their experience.
07:36 [Allycia Wolff] Welcome Kadwell family. I’m really excited to have you guys here. Um, if you guys could introduce yourself and tell me a fun fact about you.
07:48 [Micah Kadwell] My name is Micah Kadwell. And I play my guitar.
08:07 [Allycia Wolff] You play your guitar really, really well.
08:10 [Micah Kadwell] I play my guitar really, really well.
08:16 [Allycia Wolff] That’s perfect. Thank you.
08:19 [Frank Kadwell] Yeah, my name is, uh, Frank. Well, let’s see – I’m excited that Star Wars is coming out. [all laugh] That’s my fun fact. I enjoy that series.
08:24 [Nicole Kadwell] My name is Nicole and I love the Chicago Cubs. We’re a baseball family.
08:42 [Allycia Wolff] Good! Okay so we already talked a little bit about what initially brought you to future planning. You got pulled in from advocacy and learning more about turning 18, or Micah turning 18. And as you reflect on planning with The Arc Minnesota, what would you say was the best part of the experience?
09:04 [Nicole Kadwell] Um, I think my biggest takeaway after the experience was, um, the peace of mind that it brought because, um, it was, it was broken down into steps that we could handle and it didn’t seem so overwhelming then afterwards.Iit was just nicely laid out and we had a lot of questions and nobody made us feel stupid with the questions we had. So I think for me it was just, just so nice to, um, and at the end to have that binder and to have everything in one area. So if anything, like even if Frank and I were just out one night and something happens to Micah, somebody could go to that binder and see what medication he’s on, you know, things like that. So I think really just the peace of mind that it brings, its really nice. Yeah.
10:05 [Allycia Wolff] Well thank you.
10:06 [Frank Kadwell] I think that we just have, maybe more concerns because of his epilepsy as well in terms of making sure there’s an understanding with people that are taking care of him, kind of that piece.
10:27 [Allycia Wolff] Yeah. So it wasn’t only thinking about the future and planning for the future, it was making sure that Micah was safe here now and taken care of. What about future planning in general? The whole process of setting up your will and talking to a financial planner and documenting everything that you do to support Micah. What’s something that you would tell families about that process?
10:51 [Nicole Kadwell] That it’s okay. [laughs] Well, one of the things for me I felt like, well other than like I know personally a huge piece about taking care of Micah. But it’s not like you have to be a millionaire and think that, um, you know, it’s okay that you don’t have $1 million in the bank, um, you know, to work with these financial planners. They don’t care. They just really want to help you and help you for the future you know, for you, for your whole family. Um, you don’t have to be a Rockefeller to do that kind of stuff.
11:31 [Frank Kadwell] I would say to just….there’s always… We were surprised by what came out of the future planning. Like there was a lot more that we got out of it than we thought.
11:45 [Allycia Wolff] How do you mean?
11:46 [Frank Kadwell] Well, so at the beginning of it, it’s like, okay, we’re going to do these things and you know, we’ll get X, Y, Z out of it. But really, you find things as you go through it that are not necessarily as a parent…like for example, being able to get more ideas or advocate more or do these other things that are sort of side benefits of it. So you know, I think that there’s, there’s more that comes out of it and you might even think, well I feel like I was pretty optimistic about it anyway, but I was, I think we were surprised by just some of some of the ancillary things that come out of future planning.
12:31 [Allycia Wolff] And Micah’s person-centered planning meeting. We had here, and it was probably one of the best person-centered planning meetings that I still to this day have facilitated. [laughs] I didn’t say that. And because you are such uh, you’re a family with so much life and so much love and all the people in your life are full of life and love. And, um, the person-centered planning meeting is where we talked about Micah’s future and what your hopes and your goals were and what Micah’s hopes and goals were for the future. And then we talked about who could support him in what specific ways and what steps needed to happen to move forward. What was the experience of that planning meeting like for you guys as parents?
13:17 [Nicole Kadwell] It was overwhelming and awesome all at the same time. The awesome part was having all these people in one room who love your child and who want to see the best for him. And um, so that part was really great. Along with that though, the overwhelming piece was, was all that love and support and um, and when you, as a parent, when you have a child with any kind of special needs, you worry about that if other people will love your kid and all that kind of stuff. And, um, here in one room were all these people that love Micah and only want the best for him. It was really, um, yeah, it was great. And as a parent, in my mind, I go back to that meeting a lot because, um, yeah, we got, I think Frank and I felt a lot of support there and um, and a lot of hope, you know. It just, it didn’t seem so scary then. So yeah, it was, it was a great experience.
14:30 [Frank Kadwell] And I would say it said a lot about Micah because all of these people did love him and he’s a big part of why.
14:39 [Allycia Wolff] Yeah, he’s kind of the main reason. [All laugh]
14:45 [Frank Kadwell] It was quite inspiring to see how he’s affected people. And that something that was brought to that meeting, was how much people said things about things, about the way they rethought stuff because of his reactions to things or the way he approached life or those sorts of things. So that’s great. That piece was quite inspiring.
15:10 [Allycia Wolff] Is there anything in the process that you wish you would’ve done differently?
15:15 [Nicole Kadwell] Um, I think for me, I wish I would have had my information gathered before we started. And I know that sounds silly because I didn’t know everything, all their information that we would need. But it just, uh, that would have been helpful for me. I kinda like to be planned out, to know what you need and things like that. I wish I would’ve been more prepared in that way. Um, like having his list of medication or emergency contacts, things like that. It was stuff I really hadn’t thought about even though I fill out that paperwork every year for school and stuff. And think too, like just the mindset of being open to hearing information and not feel overwhelmed by it because it really was very helpful information.
16:13 [Nicole Kadwell] And I tend to overthink things too much, so I get nervous and worried if I’m doing things right and stuff like that. So yeah, just being a little more…well maybe it’s more of like just feeling more open and not, um, feeling like I was doing something wrong, maybe…that kind of thing.
16:34 [Allycia Wolff] Yeah. Intimidated by the process maybe.
16:36 [Nicole Kadwell] Yeah, exactly. Yeah.
16:39 [Allycia Wolff] Part of the process too in FutureLife options is coordinating it all and putting it together. So as you say that you wish that you would’ve put it all together, part of the process is just putting it all together.
16:52 [Nicole Kadwell] [Laughs] That’s true. That is very true. Yeah. I wish we would have done it earlier actually if we could go back like when he was 16 or 17 in particular. But being so close to him turning 18 and his senior year, uh, that was a lot busier than we realized. So that last year of high school.
17:15 [Allycia Wolff] Yeah. So you wish that you would’ve started the future planning process when Micah was like 16?
17:21 [Nicole Kadwell] That would have been, yeah-
17:22 [Frank Kadwell] That’s a really good point about his senior year because he’s, he’s a pretty social guy. Like, you know, he had 120 people that came to his graduation party and you know, all that kind of stuff. So he, you know, he’s pretty, uh, you know, he has a lot of friends, so…
17:37 [Allycia Wolff] Sure does.
17:42 [Frank Kadwell] He had a lot of things, you know, that we wanted him to experience too, whether it was, you know, at least getting a taste of prom or this or that. You know, and it’s just all those dates really kind of stacked on each other.
17:55 [Allycia Wolff] So doing future planning before the chaos of senior year would have been better.
18:00 [Nicole Kadwell] Yes.
18:01 [Frank Kadwell] Plus they wound up…I mean, it’s great! They gave him an award that, you know, so then there was, you know, everything was like another date. Not that it’s bad – it was wonderful. But yeah, we just, yeah, we just got surprised by a lot of things.
18:16 [Nicole Kadwell] It’s all good, but just how busy. It’s busy. Yeah.
18:20 [Allycia Wolff] And what was the hardest part of the program? Of doing the future planning? What was the most difficult?
18:29 [Frank Kadwell] I would say coming to terms with looking at things when you’re gone. you don’t really want to, you know.
18:37 [Nicole Kadwell] It’s hard to think about when, when we’re not around for Micah. And things like that, so…
18:44 [Allycia Wolff] A lot of families when they start to think about future planning, they know that it’s a process that they need to do and want to do it and then get really caught up in the fear of having to confront the reality of your own mortality. You know, confront the reality that there’s going to be a time that you’re no longer going to be around to support your child. How did you guys process that?
19:11 [Frank Kadwell] We’ve talked about this in the past, where neither of us are afraid of death. So I think it’s a little easier for us to talk about cause it’s just, you know, it’s there, it’s a reality. I think that made it easier for us to come to terms with it. Um, that’s what I would say.
19:31 [Nicole Kadwell] And the fact that he’s an only child too, kind of puts more pressure on for us to figure things out for when we pass, cause it’s not like there’s a sibling that can help out. Yeah. So I think that kind of him being an only child kind of puts pressure too and…yeah.
19:51 [Allycia Wolff] To do that planning and have that conversation. Yeah.
19:54 [Frank Kadwell] Yeah. And I would say that even if he wasn’t, I think it’s very important to us that we don’t burden other people. So with this necessarily, so… Not that it’s a burden, that’s a bad way of putting it. They should be able to live their life even if there was a sibling involved. And maybe there is going to be some things but at least make sure that he’s, you know, taken care of financially and otherwise so that, you know, there might be some things that they need to do to make sure that he’s safe, to make sure that things are taken care of, but that financially everything is set up and you know, it’s just a matter of sort of doing some administration things that need to be done.
20:37 [Allycia Wolff] Thank you. Is there anything else that you wanted to potentially voice in any regard? So it could be about future planning it could be about The Arc in general, it could be about your life and what you’ve learned as caregivers, or um, your love for Micah. [Laughs] You know, you could literally say anything at this point.
20:55 [Nicole Kadwell] I think sometimes I’m just, you know, as a parent of somebody with special needs, you sometimes get tired of just always asking. You know, as a parent you just sort of want to know sometimes. And you know, you go through all these years, you know, Micah was diagnosed with autism before he was three. So we’ve playing this game for years. And you get kinda tired of it, you know, so you just sort of want to do what you wanted to and not think about, “Oh, what state programs do I need to learn about?” Or you know, what school offers for him or you know, you just sort of want to be. Um, so it’s easy to get kind of stuck in that rut for a while, but um, you just can’t allow yourself to stay there very long. It just, the whole process can, you know, kind of get you down or be overwhelming that way. But um..
21:54 [Allycia Wolff] You shared with me one time too that it becomes frustrating because you don’t know the questions that you need to ask us. [Laughs].
22:02 [Nicole Kadwell] Yes. [Laughs] Right, right, exactly. Yeah. Yeah. When you have a child who has a disability, you think that you have to have it all figured out in a matter of a month kind of thing or you know, and it’s okay and it doesn’t have to be scary. You can figure things out, try things out. Maybe your child will love it. Maybe you’ll all hate it. Hey, but at least you tried. And it’s okay to put yourself out there and it’s okay to have dreams and it doesn’t have to be… [cries] It can be hopeful. [cries] And..I think The Arc has really helped in that. [cries] Sorry. And that, um, that there, there are people out there who are willing to help Micah and his future can be very bright. And it… Yeah. It doesn’t have to be so scary.
23:13 [Allycia Wolff] It doesn’t have to be so scary.Thank you.
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23:21 [Allycia Wolff] If this episode inspired questions for an advocate at The Arc, please give us a call at 833.450.1494.
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23:34 [Allycia Wolff] On the next episode of Focus on the Future, we will be talking with Jason Schellack about estate planning. We’ll cover the various kinds of trusts and why legal planning is important. I hope you’ll join us!
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23:50 [Allycia Wolff] Focus on the Future as 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 listening, please support the podcast and our mission by donating at arcminnesota.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!
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