Ohio DD Talks

Creativity Meets Supported Decision-Making, with Ohio Network for Innovation's Josh Young

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In this inspiring episode of Ohio DD Talks, Shari Cooper chats with Josh Young, Director of Operations for the Ohio Network for Innovation (ONI). Together, they delve into the importance of supported decision-making, its role as a less restrictive alternative to guardianship, and ONI's creative approaches to empowering individuals with disabilities to make their own life decisions. From the development of a unique role-playing game to strategic planning for self-advocacy groups, Josh shares practical insights into fostering self-determination and improving access for people with disabilities.

Host:
Shari Cooper, Ohio Developmental Disability Council Ambassador

Guest:
Josh Young, Director of Operations at the Ohio Network for Innovation

Key Topics:

  • Josh explains ONI's mission to meet unmet needs in the disability field, including affordable housing, employment, and decision-making supports.
  • The Evolution of Supported Decision-Making: Josh highlights how ONI helps individuals make informed decisions by understanding their options and the risks involved.
  • The Global Movement of Supported Decision-Making: Learn how supported decision-making has become a worldwide initiative and why Ohio is helping lead the way.
  • Practical Examples of Decision-Making Support: Josh provides real-life scenarios, from informal supports to structured tools like supported decision-making agreements.
  • Creative Tools for Education: Discover ONI's innovative "Dungeons and Dragons and Decisions" game, which teaches decision-making skills in a fun, safe environment.
  • Strategic Planning for Self-Advocacy Groups: Learn how ONI helps groups refocus their mission, values, and goals for greater impact.
  • Personal Stories and Perspectives: Josh shares his journey of self-discovery as an autistic individual with ADHD and how it shaped his passion for self-determination and advocacy.

Resources Mentioned:

Connect with Shari and ONI:

  • Follow Shari Cooper for more conversations on disability advocacy and empowerment.
  • Reach out to ONI for partnerships or to learn more about their work.


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[Host Shari Cooper]
What’s up everybody, it’s me again, Shari Cooper, Ambassador for the Ohio Council for Developmental Disabilities. I’m coming at-ya with an extra special episode of Ohio DD Talks. It’s extra special not just because of the great conversation you’re about to hear, but also because it’s my birthday episode! 

So I’m happy to start my celebration with Josh Young, director of operations at the Ohio Network for Innovation, which is frequently called ONI for short. 

Josh and I are going to talk about supported decision-making and how ONI has developed some truly creative services that build confidence and empower people with disabilities to make their own life decisions. You will even hear about their super imaginative game, Dungeons Dragons and Decisions. 

So let’s go! Let’s celebrate! Let’s learn something new!

[Country rock music plays]

[Shari Cooper]
So Josh, tell Ohio who you are.

[Josh Young]
Thanks Shari, and happy birthday. I am the Director of Operations for ONI, the Ohio Network for Innovation.

[Shari Cooper]
Okay, so can you tell us about what ONI is and how it got started?

[Josh Young]
Sure, so we haven't been in existence that long, but I feel like there's a lot to say about how we got started. So, we started back in 2018. There were some needs in the disability field that neither county boards nor COGS, councils of government, were able to meet.

And so our first program was short-term, it involved providing respite for youth. And then we started exploring other unmet needs. I ended up doing some housing stuff, some employment stuff.

So we're actually a housing corporation. We partner with county boards to ensure that people with disabilities have access to affordable housing. And then we do a bunch of employment stuff as well.

In 2020, I started at ONI to lead a supported decision-making project. So basically, there were counties that wanted to learn more about supported decision-making, kind of how to practice it. So we developed plans for each of those counties, which included training and education for their staff, for their families, providers, for educators, and of course for people with disabilities.

And we helped them create resources like one-page informational summaries of things. One of those was common misconceptions about guardianship. And once they had those, they could share those with other people that they serve.

So we started accepting referrals. So if a person or a team needed help to navigate a decision, we could provide that. We still accept those referrals from our partners.

And our goal is never to tell someone what decision to make, but to help them understand their options, kind of think through the risks and the benefits, possible outcomes, so they can make their own decision. So basically, if a partner needs something related to self-determination or advocacy or support decision-making, they ask us and we would try to go find the resource or the information or create it if it didn't already exist. So that led to some really creative things, one of which was the creation of the Supported Decision-Making Network of Ohio.

Because we knew when we were doing this project that in order to get the word out about supported decision-making, we were going to need some help. So while the project was happening, I was the only employee doing it. Just one person.

So I reached out to Dana Charlton at OSDA and some other people who are connected to UCEDD, University of Cincinnati Center for Excellence in DD. And we started talking about how to create a network across the state that could bring attention to support decision-making and encourage people to practice it in every setting. So that group has been working for several years now, and it's on the verge of becoming its own nonprofit.

We meet once a month, and every meeting just kind of feels more exciting and more productive than the last. So eventually, that supported decision-making project ended after two years. But we, ONI, and the counties that we had partnered with kind of felt like there was more work to be done.

They were also pretty clear about needing more options for guardianship, which is a more restrictive way to support people with decision-making, but it is sometimes necessary. And we felt like we could do that in a way that honored a person's right to make as many of their own decisions as possible. So we started providing guardianship services in late 2022, early 2023.

So that's part of our bigger decision-making supports program, which provides this continuum of support to people, which I think we'll talk about more in a few minutes.

[Shari Cooper]
So, Josh, you already answered my next question, but I want to go into detail. So for those who might not know, what is supported decision-making, and why is it important? Can you tell me what would be some decision-making a person might want to make for themselves?

[Josh Young]
When I talk about supported decision-making, I like to describe it as three things. They're related, but different. So first, supported decision-making, it's a worldwide movement.

So there are countries in the world that have been doing this for a while and doing it really well. There are states in our country that have been doing it. They're even changing their laws to make sure that it happens.

So it's nothing that Ohio can't do. We just have to know about it and decide that it is important enough to do something about. So that's the first thing.

It's a worldwide movement. Second, supported decision-making is a less restrictive alternative to guardianship. Again, sometimes legal guardianship is the best way to support somebody with decision-making, but it's also the removal of a person's civil rights to make their own decisions.

So many times people pursue guardianship because they aren't aware that there are other ways to support people. So before we end up at guardianship, which might happen but should be a last resort, we want to explore as many other less restrictive ways to support people as possible. So two, it's a less restrictive alternative to guardianship.

And then three, and finally, it's just a natural part of life. We kind of have this habit, I think, in our system of coming up with words and phrases and terms that apply specifically to people with disabilities but describe things that most people experience. Like the first time I heard the word elopement in a disability context, it made no sense.

It still doesn't make a whole lot of sense. Or the way that we tend to use the word behavior to represent some action that's seen as negative by others. So we use the term supported decision-making in our field to describe something that everyone does.

That's just getting help to make decisions when we need it. It's really that simple.

[Shari Cooper]
And for those who don't know what elopement means, what does that mean? Elopement.

[Josh Young]
So elopement, as I learned it, was really just running away. Leaving a place that you don't want to be at in a disability context. But prior to that, I understood elopement as kind of going off and getting married on your own.

But we use it a little differently in a disability context.

[Shari Cooper]
Well, you can't elope. I'm like, is that the runaway bride?

[Speaker 3]
Exactly.

[Shari Cooper]
Well, thank you for that clarification. So my next question to you is, why is this topic important to you personally?

[Josh Young]
So personally, well, let me talk a little bit about why I think it's important broadly. And then I'll go into the personal story. So why is supported decision-making important?

One, it's just related to self-determination. The people having voice and choice and control and being able to direct their own lives. And they've done studies.

So they know that people who have more self-determination, they just live better lives. They have more independence. They have better jobs.

They have more privacy. They spend more time with friends. So the biggest one is that people with more self-determination are actually better at recognizing and resisting abuse and exploitation.

So that's one of the reasons it's so important. I also like to frame the conversation about supported decision-making as one about access and accommodations. And I typically use this analogy.

So if you are a wheelchair user or you're with someone who uses a wheelchair and you're out in public and you want to go into a store and that store doesn't have a ramp, what we don't do is turn to the person using the wheelchair and say, I'm sorry, you don't have the right to go into that store. Because of course you have the right to go into that store, right? What you need is an accommodation or support to be able to do that.

So supported decision-making is the exact same thing. Just because somebody needs support or an accommodation to be able to make their own decisions doesn't mean they don't have the right to make their own decisions. They do.

They just need the right kind of support. And then personally, I've worked in a field. I've been part of the system for about 20 years now.

And aside from being just pretty passionate about basic human rights, I also happen to think that the disability system is pretty disconnected from the actual disability community. That doesn't mean the disability system hasn't accomplished some good things. But it also occasionally feels like we're treading water and you feel like we're not going anywhere.

All the while, people with disabilities are having their rights ignored or restricted while the system is trying to figure out how to move things forward. So I think the topic of supported decision-making invites this conversation about changes at a personal and systemic level. Because you can start doing supported decision-making in your own life today.

And we can work on changing perspectives of other team members or community members as we go. But we can also work to change the way the system works by just putting more control in the hands of people with disabilities. And then I had an experience in my late 30s which really did change my perspective.

So I was diagnosed as autistic. I also have ADHD. But since then, my understanding and acceptance of myself has really evolved.

Because I can look back and see how often I acted in ways that were not authentic. Where I deferred to others on a routine basis when I was making decisions. I also gained, I think, some perspective on why certain things in life have been so hard for me that maybe weren't for others.

And that includes decision-making. But also like just the day-to-day stuff, Sherry, of processing or organizing day-to-day information. So when I struggled with those things prior to knowing that I was autistic, I just thought I was a failure.

I just thought I wasn't good enough. And that took a pretty big toll on my self-esteem and my outlook on life. So now understanding that there were probably accommodations I could have received that would have helped.

Or just accepting that I still have value as a person even if I struggled with things that other people didn't seem to. So I want to be able to help others better understand and accept themselves. And to ask for help along the way without feeling ashamed.

And I think that supported decision-making is a pretty good vehicle for that.

[Shari Cooper]
Josh, I thank you so much for sharing that. Because you know, sometimes as a person with a disability, we might not think we're good enough or not making the right decision. But with other decisions, we are making them for ourselves and what's best for us.

And we have to remember that and to teach others how to appreciate that. So I really appreciate you giving me your perspective. Thank you for that.

[Josh Young]
The other thing, Shari.

I like to talk about the fact that you can't really own your decisions if you're not making them by yourself, right? How are you going to take responsibility and learn from your decisions if you're not given opportunities or you don't have opportunities to make those decisions by yourself?

[Shari Cooper]
And I think the younger you can start making decisions for yourself, the better.

[Josh Young]
Agreed.

[Shari Cooper]
Because, as you said, today is my birthday, I'm 52 years old, and I think about if I hadn't started making my decisions for myself when I was 15 or even younger, where would I be?

So yeah, I'm with you. I'm with you, Josh. I'm glad ONI did this.

So moving on to my next question. Talk to us about the three categories of supported decision-making: informal support, formal support, and guardianship.

[Josh Young]
Sure. I'm going to go back to that continuum of decision-making supports it only provides, but let me try to offer one caveat first. So we partner with organizations to provide support, but I do not want to give the impression that supported decision-making itself should be a service or a commodity that people have to pay for to receive.

So our goal is to help people understand it and how to practice it so that it can happen more naturally for people. So I don't want to be understood as a commodity, like a certain price per unit of supported decision-making. That's not how it works.

But in terms of the three categories of supported decision-making, informal supports are when somebody just asks someone else for help to make a decision. It can be friends, family, experts, professional. It occurs naturally in life.

It doesn't typically have some kind of documentation that accompanies it. So if we make decisions about changing jobs, moving to a new house or apartment, buying a new car or some medical issue, and we just ask somebody for help to think through that decision, that's supported decision-making. When you use formal supports, that can include something like a power of attorney form.

Or in Ohio, we have the chosen representative option through the state. Or even a supported decision-making agreement where we document our supporters, people that help us with decision-making, and what kind of decisions they're going to help us with. We don't have to have something like that in place in order to use supported decision-making.

But these can be helpful to put some structure around decision-making for people. And then the last one, guardianship, as we talked about before, it's a legal process. It happens when the probate court grants someone else authority to make some or most decisions for another person.

I will say, though, that even when guardianship exists, we should be looking for opportunities to promote and practice supported decision-making. Just because I have a guardian or because I'm acting as guardian for someone else doesn't mean that I should be exercising that authority unnecessarily. My role and my goal is still to support that person to make as many of their own decisions as possible.

[Shari Cooper]
Yeah, that's good stuff, Josh. That's good stuff. So how does ONI approach these and what makes the organization stand out from other organizations?

[Josh Young]
I think that even though we are still relatively small and still relatively young, we are one of the most unique organizations in the state. What we do is we kind of walk the walk instead of just talking the talk. So, you know, we strive to be a person-centered organization.

We're never going to fully achieve that, but we are constantly striving to get better and improve, to treat people with dignity and respect. And then as it relates to supported decision-making and or guardianship, we are always looking, always looking for creative solutions that maybe don't meet the conventional standards. So we are willing to challenge convention or the way that things have always been done if there's a better way to do it.

And we find that there's often a better way to do it. And we welcome those conversations, even internally. You know, there might be a better way to do something that we are currently doing it and we will challenge ourselves.

I invite everybody only to challenge me. Like, not that the titles don't matter at all, but we want to create an environment where everybody feels like they can bring whatever they have, bring their potential and push things forward. So always looking to challenge convention, always looking for creative solutions and always looking for less restrictive ways to support people.

[Shari Cooper]
So it sounds like you don't mind thinking outside of the box.

[Josh Young]
I'm not sure that, from a very young age, I'm not sure that I understood there was a box. And then eventually, like, the box gets forced on you and you start operating within that box. But yeah, I mean, I'd like to eliminate the lines that create the box and just think, and whatever solutions come, come.

[Shari Cooper]
Okay. Can you tell us a story about a creative solution you might have had with a customer or client?

[Josh Young]
Sure. You know, we get a lot of requests to develop trainings. Just ways to educate people, to help them practice things.

And one of the things we're really good at at ONI is taking complicated concepts and making them really easy to understand and practice. And just making it relatable, using conversational language, things like that. Well, one of the things that we ended up creating was this training and a game called Dungeons and Dragons and Decisions.

And it's a role-playing game, a choose-your-own-adventure game. So if you remember, like, the choose-your-own-adventure books, where you read them and the first part's always the same. But then you have different decisions you have to make throughout it.

And depending on the decision you make, it tells a different story. Well, we created a game that does that. And the whole purpose of the game is to teach decision-making skills.

So you got a group of people playing the game, and they're faced with decisions while they're playing. And as they make decisions, they experience different outcomes.

[Shari Cooper]
Where can we find that game? I am so interested. Can we find it on your website?

[Josh Young]
You can find our service catalog on our website, OhioNetworkForInnovation.com. And if you go to the Services section, you'll see our service catalog. And that tells you all about our trainings and other services we provide.

But there are three or four pages in there about Dungeons & Dragons and Decisions. And so if you're interested in learning more about it, please go there. But just reach out to us.

We do two different things with that. We do demonstrations, typically for advocates, people with disabilities, sometimes them and their families, where we go in for about an hour, and we just let them play the game. And then at the end, we bring everybody back and say, all right, you had fun, but, like, what was the purpose of doing that?

Well, all of the things that you did while playing that game, the strategies you used to make decisions, thinking about risks and benefits, working together, getting advice from other people, sometimes taking risks, even when other people don't agree. All of those things can be used in real life, too. But with the game, we created a safe fictional setting where you can practice that, right?

Because one of the other things that I've experienced, at least, is if a person with a disability who is in the system makes a mistake or things don't go well, sometimes there's just panic in response. Like, oh, they can't do that again. We can't let them make those decisions.

That's just part of life, man, making decisions and sometimes messing up and learning from those. So this game gives opportunities to take some of those risks and learn from it without it ruining your life. Like, if you choose to go to the town in the game instead of the farm and it doesn't work out, guess what?

You get to go on with your life afterwards, right? The other thing we do is we do a Train the Trainer series, and that's approved by DODD for five CPDs for employees of county boards, for people with disabilities, for family members, really anybody. And we do a deep dive into what supported decision-making is, deep dive into self-determination, and then we look at game-based learning, which is basically using the principles of playing games to teach, because there's a lot of research around that and how effective it is.

So we spent about six hours doing that and playing a lot of games to teach decision-making skills. And then at the end of that training, people get to walk away with a copy of the game. So that's one way to get it.

If you see us at a conference like OACB or other conferences, we usually have copies of the game there that you can purchase.

[Shari Cooper]
I'm gonna have to track you down, Josh, because I really want to play this game.

[Josh Young]
Yeah, please do. We love to demo it. It's a fun time.

[Shari Cooper]
Okay, so moving on, what are the most common areas that your clients need assistance with?

[Josh Young]
And that really does depend on the person, but how do I ask for that help? What kind of help can I ask for? It's things like, did you know that you can ask for more time to make your decision?

Because a lot of people don't know that, and so they don't ask for it, and they're in a meeting, and they feel pressure to make a decision, and they just make it, even if they would have made a different decision if they had more time to think about it. So did you know you can ask for more information? Did you know that you can ask for more time?

Are you thinking about whether or not someone's trying to influence your decision-making? So I think that's probably the theme, is helping people understand how to ask for help, what kinds of help you can ask for in making decisions.

[Shari Cooper]
That is so simple, and sometimes we don't know, and sometimes we forget. Because you're right, when we're in the meeting, it is a lot of pressure to make a decision.

[Josh Young]
When I was doing a training on this subject a couple years ago, and I threw that question out to a group, like, do you ever feel pressure to make a decision? And one of the guys raised his hand, and he said, yes, at the fast-food drive-thru. It makes complete sense, right?

I hadn't thought of it, but it's brilliant. If you're in the car, and you don't know what you want, or you haven't been there before, as soon as that loudspeaker comes on and asks you what you want, you feel pressure to make a decision. There may be a line of cars behind you, right?

Yeah. Yeah, that's one example, but we can extend that to your planning meetings, and a doctor's appointment, right? Feeling that pressure.

So always knowing that you can ask for time to make your decision. What a great example.

[Shari Cooper]
At a drive-thru restaurant. That is so true. That's a great example.

So moving on, what does ONI have planned for 2025?

[Josh Young]
We are expanding a lot of what we do, so we're always looking for new partners. Organizations we can partner with so that we can provide this support to people that they serve, or to their staff, their employees, to help change perspectives. We're going to try to do more with the Dungeons & Dragons and Decisions, get out to more parts of the state so that people have an opportunity to experience it and get the game in their hands, too.

Always coming up with new trainings. I mentioned the service catalog. Check that out.

Looking for grant funding to be able to do more of this stuff because we're still small, right? So we only have so much wiggle room, so more grant funding to do this stuff. And then probably the newest thing that we've started is strategic planning for self-advocacy groups.

So what we've heard is some self-advocacy groups are kind of showing up to their groups, to their meetings, and going through the motions. Maybe it's a good time to hang out with friends, but they might have lost track of what they're trying to accomplish, the potential they really have when they come together as a group. And so a lot of people think of strategic planning as this really complicated process, but it's not.

And so we go in with these groups and we help them on their own, with some support from us, choose their mission, their vision, their values, and then come up with goals or objectives they want to accomplish as a group and create a plan to accomplish those things. So that's like five, six sessions that we spend with most groups. And at the end of it, they have come up with their own mission, vision, values, and objectives.

They take ownership of it, and then they have like a trajectory or a plan to move forward. So we're excited about that one too.

[Shari Cooper]
Okay. We look forward to more of that in 2025. So my last question to you, Josh, is for those who may want to hire you to help with supporting decision-making services, what's your pricing and payment structure at ONI?

[Josh Young]
Yeah, thanks for asking that. I would defer people back to the service catalog to learn more about what we can offer. And then if you're interested, the most common way is to enter into a partnership with ONI.

And that partnership is a little under $4,000 for a year or a little under $8,000 for two years. And what that gets you is a certain number of hours to use however you want to use it. So for a one-year partnership, you can get around 40 hours to use us however you want.

You want us to come in and do an initial training with your SSA so they understand supported decision-making, or do a training every quarter with your SSA so they know how to practice it and encourage other people to use it? Great. Use some of the hours for that.

You want us to meet with families who have loved ones who are becoming adults and they think they have to get guardianship? Great. Use some hours for us to come in and talk to them about what their options are so they know.

You want us to come into meetings and help a team navigate a really difficult decision? Cool. Let's do that.

Really anything that is related to supported decision-making, advocacy, self-determination, you can use those hours for. It's very, very flexible. And then guardianship is a slightly different conversation.

The way we do guardianship has become so popular that we kind of have to build more capacity before we take on new partners. So if anybody is interested in that part of it, they can schedule a meeting with us and we can go over those options.

[Shari Cooper]
So before I let you go, you gave us great information, but is there anything else you would like to add?

[Josh Young]
I don't know that there is, aside from just reiterating one thing about ONI. Our origin is really in finding creative solutions. It's something that defines who we are.

So if that means that we do have to challenge convention or the way things have always been done, then kind of so be it. When an idea is proposed, we're going to practice curiosity first. So we're going to explore what it might look like to take this thing on, to make it happen.

We're not going to ask, can we do it first? We're going to ask, what would it look like if we could do it? Because that opens up the conversation.

So whether it's anything I talked about today or some other need that's out there that is going unmet, we will gladly bring it to the table and brainstorm about how we might be able to help.

[Shari Cooper]
And for the people who need to know, can you call out your website so people know how to get to you?

[Josh Young]
Sure, it's www.OhioNetworkForInnovation.com and from there you'll be able to navigate to our services page and see everything that we offer.

[Shari Cooper]
Well Josh, thank you so much for joining me today. This was a great conversation and it's a great organization. And I'm sure people, as me, will learn a lot from ONI.

So I appreciate you doing your podcast today.

[Josh Young]
Thank you, Sherry. I appreciate the opportunity. And you don't look anywhere near 52.

[Shari Cooper]
(Shari laughs) Thank you! 

[Country rock music plays]

[Shari Cooper]
Well Ohio, there you have it again. This is your girl Shari Cooper.

We had a great conversation with Josh Young of the Ohio Network for Innovation. 

The transcript for this episode is available on our website, along with more episodes of Ohio DD Talks. 

And, we want to hear from you! Do you have a story to share with us? You can find a survey in the description of this episode, and if you fill it out, you might get a chance to be featured on the podcast! We can’t wait to hear from you! For more information visit: ddc.ohio.gov.

As far as me, I'm about to go party because it's my birthday! So I will holler at you for the next podcast. Have a good day! I'm out!

[Country rock music fades out]