From Fear to Future: How Families Plan for a Good Life with Sheli Reynolds, PhD

E24—"I don't know what life can look like for my child." If you've ever felt that, this episode is for you. Sheli Reynolds, PhD, is a leader in disability innovation. She joins Amy Julia Becker to share free, practical tools that support individuals and families experiencing disability in planning for friendship, independence, employment, and joy.

00:00 Dr. Sheli Reynolds and Disability Advocacy
03:40 Understanding the Lifecourse Framework
09:15 Tools for Envisioning a Good Future
12:29 Person-Centered Planning Explained
16:04 The Importance of Life Experiences
21:36 Taking the First Step: Practical Advice for Parents

MENTIONED IN THIS EPISODE:

• LifeCourse (home page)
• Charting a LifeCourse Framework
• LifeCourse Facebook page

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WATCH this conversation on YouTube: Amy Julia Becker on YouTube

SUBSCRIBE to Amy Julia's Substack: amyjuliabecker.substack.com

JOIN the conversation on Instagram: @amyjuliabecker

LISTEN to more episodes: amyjuliabecker.com/shows/

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ABOUT OUR GUEST:

Sheli Reynolds is the lead developer of the Charting the LifeCourse framework and a national leader in person- and family-centered disability innovation. Her passion, knowledge, and experience comes from growing up as a sibling of a brother with developmental disabilities. She has spent her career advancing research, policy, and practices that support individuals and families across the lifespan. She serves as Associate Director at the UMKC Institute for Human Development, where she has worked for 28 years, and has held national leadership roles, including on the President’s Committee for People with Intellectual Disabilities. She has her Masters in Occupational Therapy from Rockhurst University and earned her doctorate in Public Administration and Sociology from the University of Missouri, Kansas City. 

www.lifecoursenexus.org
https://www.linkedin.com/company/lifecoursenexus/
https://www.facebook.com/lifecoursenexus/
https://www.linkedin.com/in/michelle-sheli-reynolds-phd/

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Take the Next Step is produced in partnership with Hope Heals Camp. Hope Heals creates sacred spaces of belonging and belovedness for families affected by disabilities to experience sustaining hope in the context of inclusive, intentional, inter-ability communities. Find out more about our resources, gatherings, and inter-ability communities at hopeheals.com. Follow on Instagram: @hopeheals and @hopeheals.camp

Transcript

Note: This transcript is autogenerated and does contain errors. Please check the corresponding audio before quoting in print.

Amy Julia Becker (00:06)
Hi friends, I'm Amy Julia Becker and this is Take the Next Step. This is a podcast for families experiencing disability. We've teamed up with our friends at Hope Heals to bring you weekly conversations with fellow parents, therapists, and disability advocates and experts about practical ways to cultivate a thriving future for the whole family. Here at Take the Next Step, we see your family as a gift to our society and to your local community. Your family matters.

Your child matters. We need you among us. Today I am talking with Sheli Reynolds, who is the lead developer of the Charting the LifeCourse Framework. We'll talk more about what that means. Sheli also serves as associate director at the UMKC Institute for Human Development. She's been a leader in the disability field for decades, and she's helped create a series of tools. These tools are for families who believe their child with a disability can live a good future.

So we're gonna talk today about the mindset we need in order to envision a good future and how to access those tools in the context of schools and families that allow us each to thrive.

I am here with Dr. Sheli Reynolds. Thank you so much for joining us today.

Sheli Reynolds (01:25)
Yes, I'm very excited to be here. Thank you.

Amy Julia Becker (01:29)
You are a pioneer in the disability space. I am so grateful for the incredible work that you've done in many different areas. And I thought we'd just start by getting a little bit of a sense of not only, yeah, who you are, but what prompted you to do the work that you're doing.

Sheli Reynolds (01:44)
Yeah, and I'm humbled by you saying being a pioneer. ⁓ I am here. I tell people I am where I am because of multiple hats that I wear. ⁓ The most important hat to me is that I'm a sibling of a brother with a developmental disability in his 40s. ⁓ He actually was a foster child that came to our family when I was in third grade. ⁓

you know, really have lived the life of disability alongside him and my parents throughout his schooling and my own schooling as well. And when on, I ended up getting my master's in occupational therapy and started to work at a university center on excellence in developmental disabilities, which I had no idea what that was. But my professor at my OT program,

had said, know, go over there if you have some, because we were having sort of issues with my little brother and in school, which is obviously common sometimes, unfortunately, for lot of families and came across the street because it's a university across the street from where I was actually attending and learned about this program 28 years ago. So I have been here now for 28 years and able to really take ⁓

sort of my personal experience being a sibling ⁓ and my work originally started out working alongside self advocates or adults with disabilities that were really working on their own self determination and their rights and had the opportunity to really bring together the family voice along with the self advocates voice to really kind of think about our work. And so, ⁓

Bringing all that together is the fun work I get to do every day.

Amy Julia Becker (03:40)
That's awesome. Well, again, there's so much we could talk about, but I do want to introduce our listeners to the LifeCourse Framework, which you've been integral in kind of creating and putting out into so many different contexts. could we just start with an explanation? What is the LifeCourse Framework? I'm sure many people are like, I don't know what you're talking about. How did this develop? How can people find out more about it? ⁓ Yeah, tell us about it. ⁓

Sheli Reynolds (04:02)
Yeah,

you know, the framework to me is a mindset. know, unfortunately, we have to spend a lot of time helping people realize the strengths and abilities of people with disabilities and helping to, you know, think about how do we support them to have everyday lives. And so there's a lot about the framework is a mindset. And so we have a set of principles that we use.

to really help people think differently or validate the way they think about people with disabilities. And so I use the analogy of 3D glasses. And I talk about how you can go see a movie, a 3D movie, and not put your glasses on, and you could still experience the movie. But if I put my 3D glasses on, which is I kind of is my analogy for a mindset or a framework, really changes the way I experience the movie, right?

I hear things differently, I think about things differently. And so the Lifecourse framework is being used around the country to help people have common 3D lenses on, to really think about how to support their loved one, how to support their own life. And we're even having policy makers and teachers use it as well, ⁓ because in addition to it being a mindset, there's a set of really practical tools.

for helping people think through just really any kind of area of life.

Amy Julia Becker (05:34)
So tell me about the mindset first. Like what is the, what are these 3D glasses? And then let's talk about the tools.

Sheli Reynolds (05:42)
Yeah, you know, it really came about. it starts with what we call our core belief. it's, you know, the core belief is that we believe that all people have the right to live, love, work, and play in their community. I tell people I could spend an entire day giving a presentation just on that core belief. the first part is, is helping people realize that when we're talking about people with disabilities, we shouldn't set a core belief differently.

for people with disabilities because automatically that segregates them and we think differently, right? And so the core belief is just about all people. ⁓ the other really important thing about the mindset is that like, you know, it's everybody's right to live, love, work and play in their community. And so not only do we want people to have the services and supports that they need, but we also want people to realize they have the right to the opportunity to those things.

Amy Julia Becker (06:38)
huh.

Sheli Reynolds (06:39)
The other comp, the other thing I focus on on our core belief is the concept of love. You know, there's a big emphasis on health and safety for people with disabilities, but we don't talk about friendships and love and that's what life is really about. And so ⁓ that really is the umbrella of the different principles. And then the principles really kind of go into that and help you really understand that core belief about, you know, we can't just think about

people that are with disabilities receiving services, our first concept is the all concept. Because what we know is that, you know, if you look at who's getting long-term disability services from their state agencies, only 25 % of people receive services from that. And so when we're thinking about the change that needs to happen, it can't just be the change with inside special ed or with inside our state DD service systems. And so

⁓ that concept of really focusing on all people and all families is core to that. And so, you know, there's several other principles about like the different quality of life areas. But the other one that I think really resonates with people is that as we focus on helping a person with a disability have the good life that they want, we can't forget the context of the family and their really important role in their life, both because they're

a family unit and they love each other. But families also need support on this journey as well. And so it really kind of brings together that sort of person and family concept as we really think about applying this concept.

Amy Julia Becker (08:22)
I was looking on the website and this is kind of just to underscore what you've just said, but ⁓ one of the lines about the LifeCourse Framework is, charting the LifeCourse Framework was created to help individuals and families of all abilities and all ages develop a vision for a good life, think about what they need to know and do, identify how to find or develop supports, and discover what it takes to live the lives they want to live. And I just think that's like a wonderful...

I don't know, really just again, kind of highlighting what you've just told us, but it does lead to that question. Again, we could spend our entire time just talking about the mindset and more, and listeners here know ⁓ that I really do think it was a huge shift for me as a parent, and it is something that I encounter regularly in talking with other parents that when we shift that mindset, there's just like kind of possibilities that are unleashed. But I also want to just name some of the types of tools that

out of this really can build on that mindset shift. So can you tell us a little bit about the tools?

Sheli Reynolds (09:27)
Yeah, you one of the first tool, and again, I tell people like, you don't need to go to the website and get the tool. can just either think this way or like grab a piece of paper and draw them. And think that's the beauty of them is they're the simplicity. Although they appear simple, they're complex in terms of the conversations you can have. And so, you know, one of the things that I've really found ⁓ when having conversations with families and individuals with disabilities, right, is that ⁓

you know, we want to understand their vision and where they want to go. And the vision could be like my vision for next week or next year, or it could be in 10 years, right? It could be really anything that I'm striving for. And, you know, I find that a couple things happen when we ask that question. First of all, some people might rattle off their vision or other people sit there almost with a question mark. And especially for families that they're like, I don't know what a life for my child can be.

you know, when I received the diagnosis, like things became unknown there. But in our vision tool, I think one of the most important boxes is underneath it and it's what I don't want. ⁓ I find so much power in that question because I've yet to meet a parent who cannot completely fill that box out of what they don't want for their child, even if they're unsure of what life might look like for their child.

And I tell people that is an amazing starting point of being able to say, you know, I don't want my child to be bullied. I don't want them to live far away. I don't want them to live in this type of setting. Right. And so, ⁓ you know, really, really pulling on the strength of what I don't want, especially for families is important. The other thing on that exact same tool is, and this is what we call our trajectory tool is

is there's this line that goes towards our vision. And so often, right, being a family, you get a lot of professionals talking about the services you're eligible for. they're wonderful. And services are a really important part of many people's lives. But I always tell people, if our life becomes a service line of always worrying about what service is next,

we're not actually keeping you on your life trajectory, which is really those life experiences that you should be having. Like that's what makes you who you are. It gives you the life that you want. And so ⁓ that life trajectory tool allows for that sort of conversation about what's going well in my life and what's not going well in my life. And so it helps you both to start exploring, but then also use that as a stepping stone for some of what we call our.

planning documents where you're like, okay, now that I've explored ideas, like, what's next and how do I start actually breaking that down into smaller steps?

Amy Julia Becker (12:29)
Yeah, so let's talk about that for a minute. There's this concept kind of in, you know, disability circles of a person-centered plan, which I know resonates with the work that you're doing. you just talk about person-centered planning and how that's different from other types of planning?

Sheli Reynolds (12:45)
Yeah, and I think that, you what I always tell people, especially when I'm talking with families, is ⁓ our whole sort of national, whether it's in education, whether it's in healthcare, whether it's in long-term services or disability services, this concept of person-centered and person-centered thinking and person-centered planning has come about.

Amy Julia Becker (13:09)
Yeah.

Sheli Reynolds (13:10)
My mom used to always tease me. She's like, we already are person centered. We only think about Eric's needs and our family's needs. And so what I like to remind families is that the concept of person centeredness or person centered planning really came about as a counterbalance to really what we call professional driven systems or professional driven decisions. so, you know, the day and age of your doctor only knowing what's best, but not knowing your goal.

would be a patient-centered outcome, right? And you go into schools and ⁓ you're not just thinking in terms of groups. You my child has Down syndrome, so here's their goals. It's more this child, you know, my brother Eric is a person with his own needs. And so the concept of person-centered is really being able to ⁓ tailor and think about services and supports for the needs of that individual. so person-centered planning

has become the sort of formal regulations and evidence base to say, how do we help professionals truly understand the individual needs of that person so I can create the services and supports and the team around them that they need? so, China Life course is being used in schools and the foster care system and the long-term service system for meeting.

requirements that are related to person centered. So professionals are using them to really gather that information that they want about that child or person so they can better develop formal plans. But it didn't start there. That's not why we started it. We actually started it because a group of families in Missouri and individuals with disabilities, ⁓ we would get together and we would talk about

What do we need to not feel alone or isolated and navigate the life that we want, not just the services that we want? And so we started to have these conversations and organize our thinking in a way that was like, it has to be common speak. It has to be everyday language, the way families call and ask about problems they're having or, you And so we started to develop tools for individuals and families to navigate life experiences.

⁓ And so those tools became a way for families to sit down and be like, well, let's talk about what your vision is and what do you want for employment or housing or, you know, depending on the age of the child. And so that's the beauty of LifeCourse is that it wasn't designed to meet a regulation, but it's being used to help ⁓ meet those regulations, but it was developed for people to use in their own everyday life.

Amy Julia Becker (16:04)
Well, and I will say it was not, ⁓ we had a school district that initiated person-centered planning for our daughter when she was in sixth grade, which is part of where this podcast has come from over the years because it was so helpful to us to pull back, ask the questions of who is she, let her advocate for herself in terms of what she wants in the future. As you said, whether the future is next week or 10 years from now. And I've said this probably here before, but... ⁓

early on in middle school, she said, you know, when I'm older, I want to live in an apartment with friends. And so it was like, okay, well, there's not much we can be doing right now about that. You're 12, you know, but you can learn how to do laundry. And so these kind of like household tasks, which went from being chores to being something that were much more motivating for her because she, it was like, well, if you don't want me...

Like, I'm not gonna do your laundry if you're living with your friends. So, you know, so it was just, that's a little example, but at the same time, there was so much wrapped up in that in terms of my mindset towards her, her mindset towards herself, as well as actually developing a skill of being able to do the laundry.

Sheli Reynolds (17:15)
⁓ If I talk about sort of the disability sort of life trajectory, it's like, you go to school, you go to early childhood, you go to special ed inside schools, and then some people don't know what to do after adulthood and they're taking down some of your traditional paths of like, what is available? Is it a group home? Is it what type of employment? And we try to help people understand of like, if I just think about my life,

⁓ Whether I realized it or not, I was having life experiences essentially since I was a toddler that took me in the direction of my career because, you know, I started to pretend play, I started to learn social skills. My parents gave me chores around the house. And so, unfortunately for people with disabilities, we have to be intentional about saying, are you exposing them to life experiences?

Amy Julia Becker (18:12)
Yeah.

Sheli Reynolds (18:13)
Those life experiences give them dignity of risk. They expose them to things they like and they don't like. And I think about some of the things that unfortunately we probably did to my little brother out of love and fear of safety, You're like, let him go make mistakes. let's let him, no, don't let him just go out and do something outside like you would your other children. And I'm not saying you do things unsafe, but I'm saying...

You know, we can cool our loved ones so much that their opportunity for life experiences. And so we have life experience resources that are some of my favorite, because it's like, let's think about what somebody that age is doing and what my mom has reminded me. And we organize them by life stages. we like to look at them and say, for my brother who's in his 40s is like,

We ignore the life stage or the age at the top and we're like, he now has the building blocks to do the next step. And I think that's what's so very important is that like, he didn't just stop learning because he left high school and people almost forget to keep teaching him things now that he's an adult.

Amy Julia Becker (19:26)
totally resonate with that. And I do think, I mean, obviously, this podcast, I'll take the next step for exactly that reason, to both on the one hand, try to get off of the measurements and thinking, oh, if you haven't achieved this by this time, there's something wrong. Right. So getting away from that. And yet at the same time, being like, but possibilities, learning, growth, connection is all possible. One, I have kids who went, my other two kids went to a Montessori school and their head of school always said to us as parents,

what is one thing you're doing for your child that they can do for yourself, for themselves. ⁓ Identify that and stop doing it. But also what is one thing your child can almost do for themselves. And that has been really helpful for me in this idea of the dignity of risk of like, what can she almost do for herself? It's like this kind of growing edge where I at the very least need to pull back my support in that area. And it might mean that I still need to support her.

Sheli Reynolds (20:07)
then I'm

Amy Julia Becker (20:24)
But the fact that I've been doing it for her is really taking away her dignity and that opportunity to make mistakes, to grow, to learn how to ask for help, whatever it is, ⁓ without putting her in a really dangerous position, which I certainly could do otherwise. That's all really helpful.

Sheli Reynolds (20:41)
Well, and I tell families all the time and it's hard, right? So I can say it, it's not as easy to live it, right? But is that, you know, ⁓ when we do for them, we think we're making their lives easier and we think we're making their lives safer, but we're actually doing the exact opposite because we're not going to be with them forever. Right. And so, you know, how are we, you know, setting those those seeds of experiences and

I often tell families is like, it's gotta be within the culture of your family. Like if none of your kids do chores, then don't have your child with a disability do chores. But if you expect your children to do other things, you should expect all your children. you know, we as families, we want the world to accommodate and include our children. Have we taught ourselves as a parent how to make the adaptations and accommodations to the same expectations in our own family home? Yeah.

Amy Julia Becker (21:33)
That's great. Well, so we're coming to the end of our time here. I can talk to you all day long, but I'm curious for a parent who's listening here and who's interested in what you've been talking about, but maybe feeling a little overwhelmed also at the thought of like, don't know how to do this. I've got to shift my mindset and I need to make a plan and I don't even know what the future holds and all that. What is one step? Where do they get started?

Sheli Reynolds (21:56)
Yeah, yeah. So, you know, ⁓ this was not something we set out to create. It is something that has just evolved from talking to families and meeting needs. And so I always warn people we have a website that is so full of rich, in-depth information and that's free tools and the free videos and all of that. And it's partly because the demand of like, we know you have this tool out here. You've talked about it, but I can't find it. So some of it we've

this throne stuff up there. And so ⁓ that is overwhelming. And I understand that, but a lot of people also start there too. ⁓ And so I tell people, it's kind of like walking into a teacher store of like teacher materials, but you know, you can also learn from those. But I will tell you it's not out yet, but we are launching a page that is dedicated to really sort of walking people through this in a much more

family-friendly approach. But what I always encourage people is to even start on the home page and go to those videos. Those are videos of moms and dads and individuals with disabilities who are talking through certain things. that's really where I start. And the page probably a lot of people skip over is probably the principles and the framework.

But that's where there's a lot of really good information about this. ⁓ And so I would start there. ⁓ And again, getting to the problem that you've addressed is I'm also hoping that we will have that more simple version for individuals and families soon.

Amy Julia Becker (23:41)
Well, we will certainly link to that website in our show notes and make sure, again, if you are a parent who's listening, that you go with maybe that question of what is one step I want to take today. ⁓ One video I want to watch, one tool I want to download. And then when you're ready, the next step will be waiting for you because it's a very rich resource and we're grateful for that.

Sheli Reynolds (24:03)
Yeah, and I would also add is that, ⁓ you know, the life course is what it is because we have partnerships all over the country. It really accelerated nationally when we partnered with the National Association of State Directors for Developmental Disability Services.

which is the organization that provides support to the state DD service systems. And ⁓ they were the ones that really saw value in it in terms of systems change in addition to it being valued for a day to day. And so I'm sharing that with you because we have a lot of family organizations who host lots of workshops on it in different states. So there's different places to get stuff online.

you know, our Facebook page, we talk about the different workshops being hosted around the country. So it's possible your state has opportunities as well for that exposure.

Amy Julia Becker (25:00)
Awesome. We will make sure that people at least know how to go check those things out. And we are also looking forward to the family page when it comes. So please let us know. But mostly just thank you for the work you've done, as you said, for almost three decades officially now and even longer, I know, as a sibling. So we are grateful for it and glad to get to talk to you today.

Sheli Reynolds (25:21)
Yes, well, I really, it was quite an honor to be here and I hope that this was just starting to expose people to it and hopefully we can get people more connected to it. So that's why we're here. So thank you for having me.

Amy Julia Becker (25:33)
Absolutely. Thank you.

Thanks so much for joining me here at Take the Next Step. This show is produced in partnership with our friends at Hope Heals, a nonprofit that creates sacred spaces of belonging and belovedness for families affected by disabilities to experience sustaining hope in the context of inter-ability communities. We have one more episode in this season of Take the Next Step. Next week, I will be talking with Mike Erie,

about his experiences being a dad. He's also a pastor and a friend of Hope Heal's. So I think you'll really enjoy what he has to say. And I'm happy to let you know that although this show will be on pause for a little while, a new episode of my other podcast, Reimagining the Good Life, will drop in mid-May. So this other podcast is about reimagining the good life through the lens of disability, faith, and culture. So over there, I interview guests in conversations that

challenge assumptions about what makes life good, proclaim the inherent belovedness of every human being, and help us envision a world of belonging where everyone matters. So as we finally come to a close here, please follow, rate, review, take the next step. We want more people to know that this exists. And as always, you can just share this conversation with others. It's a great way to get people to know about it. ⁓

you want to be in touch with me, we are planning for next season, so send me a text or email me at enejuliabeckerwriter at gmail.com. And I want to thank Jake Hansen for editing the podcast and Amber Berry, my assistant, for doing everything else to make sure it happens. I hope you leave this time feeling encouraged to start with the light, connect a community, and take the next small step toward a good future for your