#053 Just Enough Support with Keenan Wellar

#053 Just Enough Support with Keenan Wellar

You can listen to this podcast episode on iTunes or Spotify.

We know that not having the right supports in place can be disastrous in the life of a person with a disability.

But it is also true that too much support is also dangerous.

Just like Goldilocks, we need the type and amount of support to be just right.

just enough support

Keenan Wellar from LiveWorkPlay supports adults with intellectual disabilities to live good lives. LiveWorkPlay uses seven principles to guide them in providing just enough support.

This week on the podcast Keenan explains the concept of “just enough support” and the seven principles that guide that work.

The first principle is the broadest, but really nothing works without it, and that’s Person-Centered Thinking. This doesn’t just mean asking a person questions and using the answers to make a plan, this means a belief in our hearts and minds that our purpose is to get to know a person to the best of our ability and to support them be in the driver’s seat to map out their own life journey.

The second is Assets-Based Solutions. This doesn’t mean ignoring the barriers a person is facing, or pretending that their disability does not exist. What it means is solving problems by focusing on what can be done – how can the person’s gifts and talents contribute to reducing or eliminating barriers. Where support is needed, how can that help be designed to increase the competence of the individual, rather than develop a dependency that will make them less capable.

Third is the principle of Community-First Approaches. Whether it is a problem to be solved or a desire to be fulfilled, what existing community environments, resources, or people might be the answer? For example, instead of “special needs” programming, how might the person be supported to take part in recreation, sports, or the arts alongside other citizens in regular community venues like a YMCA or a community theatre?

Fourth is Barrier-Busting Technology. It’s a routine experience that we’ll be having a person-centered planning conversation with an individual and their family, and the point we’ll be made that “they can’t use a stove” or “they always lose keys” or “they can’t keep an appointment” or “they get lost on the bus” just a few examples. Those can be really powerful statements, because whether they are 100% accurate or fair or not, they certainly present obstacles to having your own apartment, or getting a job, or even going out for dinner.

Fifth is Authentic Valued Roles. There are many books, videos, and studies about social role valorization, so I won’t go into great detail, but I want to emphasize that people with intellectual disabilities are no less desiring of what is real than anyone else. They know and experience a real friendship or a real job just like anyone else – the difference is that because of segregated environments like day programs, it’s possible to develop the perception that “that’s where those people are happy.”

Sixth is Always Building Bridges. Just Enough Support isn’t about eliminating paid support from people’s lives. At LiveWorkPlay providing direct service to individuals who honour us as their choice of service provider is very important and a big part of why we exist as an organization, but a key to our work is always thinking of how there’s an answer beyond that agency relationship. It could be a natural support, such as a friend, or a community-first solution, and we apply a lot of time an energy to being a bridge to those solutions.

The seventh principle was added well after we completed the video series, because we realized that although it is implied throughout all the other principles, it should be clear stated: HONOURING PERSONAL AUTONOMY is principle seven. This means not only respecting the right of each individual to make their own life decisions, but to support each individual to progress in their ability to control all aspects of their life. This does not mean their need for support will be eliminated – but there is a huge difference between helping a person develop their ability to make their own decisions, and making decisions for them.”

If you have ever done something for your son or daughter that was a little more than what they needed then this episode is for you.

So, that’s all of us, am I right? 🤣

Next on the podcast, I’m talking to Karen Hunt, a mom who has been working on the idea of just enough support and is seeing some exciting and positive impacts in her son’s life.

I’m not going to email you about this bonus episode. Make sure that you subscribe to the podcast so that you don’t miss it.

I’ll be adding more and more of these BONUS episodes highlighting a parent’s story. Don’t miss out. Subscribe to the podcast today.

Transcript

Genia:
Welcome to the Good Things in Life, the podcast that helps us support our kids with intellectual disabilities to build good inclusive lives at home, at school, and in the community. I’m your host Genia Stephen. Today. I’m excited to be here with Keenan Wellar talking about Just Enough Support. Keenan is the co-founder and current Co-Leader and Director of Communications at LiveWorkPlay a leading-edge charitable organization based in Ottawa, Canada. It’s been helping the community welcome and include people with intellectual disabilities and autistic persons to live, work and play as valued citizens since 1995. Keenan is a certified Ontario educator with a Master’s in Applied Linguistics from Carleton University and is a BoardSource Certified Governance Trainer. An early adopter of social media, Keenan is also a frequent commentator on local radio and television and an outspoken advocate for charitable sector transparency and accountability. Keenan, welcome and thank you so much for joining me today.

Keenan:
Thanks. Great to be here.

Genia:
So I wonder if you would start by introducing yourself and explaining your relationship with people with disabilities and their families.

Keenan:
Sure. Well for me, it was actually a bit of a happy accident when I was a student back in university and looking for some part time work. And I applied for a job that I thought was actually for working with children from economically disadvantaged families cause the phrasing and the ad was a bit odd. And as I sat in the interview, I quickly realized this was not that. And so it came to pass that some weeks later I actually really met and had conversations with people with intellectual disabilities and autistic persons for the first time in my life actually. Probably went home after the first evening. It was basically a social program and was really excited about it. But then I asked myself, “Why am I meeting not only these individuals but people with disabilities for the first time in my life?” And was actually really upset and started to thinking about it and realizing of course, cause they’d been segregated from me their entire lives and they continued to be segregated from me, including this program that I’m now working in where they are together in a group. And I’m only seeing them cause I’m working there. And but it was my introduction to the population. It was my introduction to their families and the issues they are dealing with. And it’s stuck with me for a long time cause it was another you know, seven or eight years before I got back to it after working in the education system and actually working in high tech community before. Abandoning that and joining with my wife to start a liberal replay and commit to do it full time.

Genia:
That’s great. And can you explain what LiveWorkPlay is?

Keenan:
I’ll try. It is a, one level, it’s a, it’s a charitable organization. We’re focused on work locally here in Ottawa. We have now 25 staff, over 150 volunteers and really focused on supporting people with intellectual disabilities and autistic persons to have a full life in the community, which typically looks like an apartment, job, friends maybe romantic partner and setting things to do that people choose to do in their community and helping them make that happen. That’s pretty much what we do day in and day out.

Genia:
That’s great. And can you explain a little bit of the background to the concept of Just Enough Support?

Keenan:
Sure. I think in the first 10 years of LiveWorkPlay, we did a lot of traditional things and we did have a lot of grouped activities and programs and realized that this was not the answer. But we’re just struggling to figure out how to transition and move to individualized support, which we get throughout about 2006 to 2008 and closed all of our group programs and really invested in learning about person-centered thinking and individualized supports. And we’re doing so by 2008, but struggled with how do you explain this? For example, to new staff or to volunteers or to a family member who’s coming in to ask what do you do? And it was really tricky because we used to say, “Well, these are our programs and this is the thing that you can choose from.” And that switches to, “Well, it depends what’s your son or daughter wants to do in life cause we’re here to support that”, which is wonderful at one level but also baffling at another level if you’re used to just having programmatic explanations of things.

Keenan:
And it sounds a little wide open and a little vague even though ultimately this is probably very specific and very focused. So we were kind of struggling from both perspectives internally. How do we define what it is we’re doing and how do we measure it and how do we hold ourselves to account. And also at the same time looking to solve the problem of how do we explain what we’re doing to people who don’t know about it in a way that will make sense and that they’ll see it’s not something we just make up. There are lots of boundaries and thinking and research behind what we’re doing.

Genia:
Right. Okay. So you have seven print core principles that you use to help yourselves and help others to understand what Just Enough Support means. But maybe, maybe we should back up just a little bit. So that’s the background to kind of where it, why it became a really pressing why the concept became really pressingly important in your organization. But that doesn’t necessarily explain exactly what Just Enough Support means and why it’s important. So maybe we should actually start there.

Keenan:
Sure. We actually first discovered the term, it’s in a document that was put together in 2010 by John O’Brian and Helen Sanderson and various luminaries of the individualized support social role valorization sort of a world. And they were getting together just to talk about, well, we know under supporting people isn’t healthy, but we also know over supporting people isn’t healthy and how do we capture this concept? So in that document, it’s actually just a little bit of a paragraph where they talk about Just Enough Support. And so we took that to mean, well of course, if someone’s not getting, it’s obvious. If someone’s not getting enough support, then they’re going to experience all kinds of issues. And I won’t go into that. But I think it just drove home something we were having difficult, difficulty communicating not only with family members, but maybe even employers or just people in the community, maybe the worker at the YMCA who’s welcoming people and is maybe overdoing it and really taking over learning that the person needs to do themselves instead of supporting them to learn.

Keenan:
Just really taking things over for them, like, “Oh, manager key for you”, or you know what I mean? And so that’s the over support issue and really understanding that that really condemns people to not learning from themselves and yielding a lot of control and autonomy to other people who are doing all those things for them. So if we as an agency or a family members or a support in the community you know, well, meaning way usually is taking on a lot of responsibility for the person, well that pretty much eliminates the chance that they’re going to learn that and take them on for themselves. So it’s creating a dependency. It’s just going to go away. And we also know over time, people’s ability to learn, it’s going to decline. So the longer they aren’t doing it for themselves, the more it becomes routine that they don’t do it.

Keenan:
And then we’ll just declare, “Well, that’s something they can’t do.” And we see this all the time in systems and families and relationships. If we just get used to people not doing something, then they’ll never end up doing it. So we’re just really challenging ourselves to take that head on and just to stop saying, you know these are the list of things a person can’t do. These are lists of things a person hasn’t done yet and [inaudible] to do them for themselves. Our job isn’t to say, “Well, it says here that you can’t”, our job is to say, “Let’s tackle the barriers that are keeping that from happening right now.”

Genia:
Right. Super powerful. Yeah. And you know, other terms that get used to talk about that dependency are learned helplessness. And it’s, it’s interesting. I remember, I remember when I was much younger than I am now looking at old married couples that had been together for 50 years. And, and my, you know, my grandparents were one example where there were a lot of really, for them it was very gender specific, gender specific to, you know, traditional gender specific tasks. And I remember thinking, “Well, that’s never going to happen to me.” You know, like I’m, I’m a, you know, independent woman and like I will, I will never do that. But there’s a certain amount of learned helplessness that comes from people even just in some ways growing into their own strengths. So, you know, I have a spouse you know, the traditional gender roles aside, he has his strengths.

Genia:
I have mine. We tend to just keep in our lane in that, in that way because it’s efficient because we’ve got lots of, you know, business of life to take care of. And all of us, you know, in the family being good at all of the things is not efficient frankly. But when it comes to supporting our kids with disabilities, that efficiency that, that need for efficiency combined with low expectations and a lot of negative messaging about what our kids are capable of means that there, it can apply, that learned helplessness can apply to almost every aspect of one’s life. Instead of some of the very targeted things, which I know frankly refuse to learn how to do because it’s not my job.

Keenan:
Excellent analogy. And the point being of course, that what you, you said that the tail end is that typically for the population we’re supporting, it’s not like they have like 30 things that they’ve been sent. You’re got a dozen there choosing both because they’re favorites. It’s, they’ve been told a hundred things they can’t do. And there, maybe there’s three things that they’re supposedly is their lane. And so it’s a pretty limited amount of choices. So really our, our role typically is let’s create some more lanes according to your own, what we’ve observed and what you are telling us. And let’s explore as well because a lot of people don’t know. I mean, I think you look at something like employment and you can’t just say, “Well, what is it you want to do?” Because a lot of people that we are meeting for the first time, they may have only two ideas.

Keenan:
And if you dig not too deeply, you’ll figure out, well those are the only two things they did in co-op, in high school and someone told them those are the two things that you can do. And so their initial reaction to, “How about an office job?”, is just, “Well, I can’t do that.” And so, you know, we would typically start with, “Well let’s go and visit an office and let’s see some of the different things that they do and see if it all interest you at all. And maybe that’s a difference.” So we really have to be very careful that, and that’s where, you know, when we talked a little person-centered if say a new staff comes on and they haven’t done this kind of work before, they might think, “Well, you just asked the person, then you do what they say. And that’s person-centered.”

Keenan:
But there’s a really important context to that, which is what is their lived experience? What is their ability to answer that question in an informed way, the first time you asked it and how might that answer change if they visited a few different things, urge from some other people, had some experiences? So it’s a little more tricky than just saying, “Oh, of course you just do what the person says or what their family is telling you.” That’s important, important information and we have to respect that. But we have to look at the context. If they’ve had 40 jobs before then of course let’s just, the one they want to do is the one we’re going to pursue. If they’ve had two high school co-ops, well, no, we have to broaden their horizons so they’re making an informed choice.

Genia:
That’s right. Yeah. I love that you’re talking about one responsibility that we have is thinking about how we can explore ways to overturn or overcome deprivation of experience or deprivation of opportunity. You know, when we’re talking about young children, really the focus for parents and, and others is preventing the deprivation of experience and the deprivation of opportunity because you know, the normal pathway of childhood includes rich opportunity for exploration for learning. But we do end up in that, people do experience that repetitive cycle of having doors closed and closed preemptively as well. You know, and I think about this podcast has been on the air, published. I’m not even sure what term I’m supposed to use for that, for a little over a year now. And when I thought maybe I would like to explore this, I had none of the skills are next to none of the skills.

Genia:
And it’s been an iterative, iterative process of exploration, trial error failure, you know, and, and trying again with various levels of me, you know, paying for people to teach me things, paying for people to do things on my behalf because I could only learn so many things at once, you know. And then, and then decreasing scaffolding of support as I figure things out. And interestingly, as I like that for me in this experience of learning how to host a podcast, as I go along and figure some things out, I’m now actually re-introducing in some aspects of this podcast, more support. You know, so I’m figuring out, and we do this in all, it’s just meant to be an example in any aspect of our life. You know, the, sometimes we need to, we need a lot of support at the beginning, which decreases. But then we get to refine how we run our own lives. And that might mean bringing more support back in certain areas of our life so that we’re freed up to really live our best life in other areas. So anyway, that’s, that’s a, okay, so, so Just Enough Support, so we’ve covered kind of what it is. I think that’s great. So I wonder if you could just list the seven principles of Just Enough Support and then we can go back through them one by one.

Keenan:
Sure. Well, I mentioned a person-centered thinking already. Always building bridges, assets based solutions, authentic valued roles, community first approaches, barrier-busting technology, and then last but not least, honoring personal autonomy. That’s the seven.

Genia:
Right. Okay. So let’s start, I mean, I think you’ve given a pretty good summary or description of person-centered thinking, but let’s, let’s just summarize that anyway.

Keenan:
Sure. I’ll just add to it. You know, it’s not about people like to think of person-centered and they think of like the plan on a piece of paper and that sort of thing. And actually it’s really good to have a plan cause then people know what they’re agreeing to and who’s supposed to do what. And accountability, responsibility or like you just mentioned, things can shift as someone as exposed to something new, that plan on paper might quickly become irrelevant. And so it’s not about the plan, it’s about the thinking behind it. And so we labeled it person-centered thinking because we didn’t want to make it about an administrative process. It’s about a pattern in the brain which is we’re just always observing, listening responding, reflecting with the person and their family and adapting as we go along.

Keenan:
So that it’s really reflective of what their needs are. It’s kind of sad, but you will actually see someone’s, a person is expressing something and someone says, “Well, that’s not in your plan.” So we endeavor to never do that. That is not, yeah, no, it really does happen. And I, I’ve heard it way too often. And so you know, I’ve actually ended up in strange situations where I’m defending person-centered planning because it means something entirely different to family member X because their experience of it has been, it’s a piece of paper that was held in her face to explain why something’s not possible. I’m like, “Okay, no.” As let’s say, person-centered thinking then because it’s not about that. So that’s that. Always building bridges is really to keep us focused, particularly from a staff perspective. We’re not there to replace relationships.

Keenan:
We’re there to build them. And so if a person is starting to you know, think of us as their, their friendship circle and they’re not actually developing any friendships. If they’re starting to think of us as a replacement for really any, any natural relationship they wouldn’t encounter in the community. So if the person likes hiking the idea it would’ve be that they get attached to, I only go hiking with John, my staff. The idea would be John is helping you find a hiking club that has the right culture for you so that you can continue with hiking throughout your life. And it’s nothing to do with whether a LiveWorkPlay staff member is available to go with you and hopefully you will, for that hiking club, meet some people that you may go hiking with them outside of the hiking club and it becomes a part of your life and not a part of LiveWorkPlay at all.

Keenan:
We’re there to support it. But beyond that also it’s just the day to day of your supporting someone at the bank and the bank teller is trying to talk to you instead of to the person who has the bank account and just really being out front and an advocate, “Oh, I’m not here, it’s not my bank account. I’m just here in support and really putting the person in charge of their own life and helping them be seen and be heard and the way that they deserve.” So assets based solutions is just our way of reflecting that if you’re a family member coming with your son or daughter to meet with us for the first time, yes we probably been forwarded the binder of things that is wrong with your child. We are not very interested in that other than how some of that may help us support the person.

Keenan:
But really we want to know what they’re good at, what their interests are and develop that because the rest doesn’t really matter other than the ways that it interferes with where the person wants to go. And we’ve used that approach throughout. So whether it’s community participation or employment we don’t do the sort of assessment and you know, “Oh, you’re at the third percentile and forget this kind of work or that kind of work.” It’s really, the person says I want to work. And that’s the only qualification to get employment supports from us. And then we just go from there based on what their known assets are and then what we can find out about them that maybe wasn’t known that helps them make some decisions or helps someone else appreciate what they could offer.

Genia:
Yeah. Can I ask you a question about that?

Keenan:
Of course.

Genia:
So, I, I just want to, I just want to, I guess pause and just say, okay, so an asset then my might be some skills and competencies. It might also be some positive personality traits that would lend themselves well to particular situations. It may also be some of people’s sort of inborn gifts or talents that they bring. So when we’re talking about asset based solutions those are the kinds of assets that you’re talking about. Not necessarily that somebody would have to have an impressive resume of skills and experiences that would be assessed in that.

Keenan:
Perfect. So we’ve done a lot of work with Bruce Anderson around core gifts, and that is one of the ways that we, it’s not for everybody, but for those that are interested in it, really exploring with them about themselves. And yet that’s exactly what I mean. It’s, it’s gifts, talents, all of it. Yeah. And what they’re passionate about. I mean, at one level it’s just about, “Let’s look for the sparkle in someone’s eye, whatever it is, whether it’s theater or work or where they want to live. Like let’s just look for what is clearly exciting them and let’s pursue that.” And that’s to me, what assets based solutions all about.

Genia:
So in your experience, running LiveWorkPlay in assisting people olive the life that they want. Have you ever met a client or had a client walk through the door where you couldn’t identify some rich assets from which to build?

Keenan:
Yeah, absolutely. And I think some of it also has to do with communication. So, you know, we supported a number of nonstandard communicators and it takes us a while. I mean, you need to really invest and spend time and see that person, invite them to different environments and really be observant and obviously listen to family members. That’s going to help you skip quite a few steps often. But also as I think you mentioned before, there may be things that the family members haven’t observed either. And so what are some things that we typically could access that maybe a family member has not where we can observe their son or daughter and, and take notice some things. But yeah, I mean it’s a, it’s, it’s a public a story, but I mean a gentleman we support named Phil who was introduced to us with quite a lot of negative labels and he is a nonstandard communicator but definitely communicates just fine. So it was a matter of learning how to interpret it. And a very long story short, but I know that for his family his parents had certain dreams of their own and they pretty much had set aside for life because in their experience it would probably meant like we need to be at least be in the same city to support him throughout his adult life for as long as we can.

Keenan:
And I think it was about five years. They actually just announced, “Well, we are moving to the Maritimes and we are opening a bed and breakfast. And we are confident that Phil is fine here and we will Skype with him and we will stay in touch. And he has one local relative who will stay in touch and they were play has a relationship with them and we think it’s fine and we’re off and running with our dream.” But that really if I dial it back, that house started with some really unclear ideas about what the future would hold and a long history of that family really facing a deficits-based school system and developmental services system where it was all about the limits on Phil in very little talk about opportunity.

Genia:
So for, when Phil first walked in the door, nobody could make a list of his assets, but not because he didn’t have them.

Keenan:
Right. I mean, some were, were apparent right away. I mean for like within 30 seconds. I’m like, “Okay. He’s a people person.” This is obviously, he’s interested in the people in the room. He wants to interact. He definitely appreciates humor. He knows movies, like a lot of things came out very, very quickly. And then it was just like, how does this apply to these to things like having us an apartment or having a job. And that takes a lot longer. But the apartment piece actually came quite quickly and the employment has been trickier because the communication about whether he likes his job or not. He doesn’t just say, “I don’t like this job.” It’s more he communicates in different ways, like basically not performing as well as same good. And so we sorted through a number of positions with wonderful employers and there was never like a huge issue. But we just started to figure out, okay, when this starts happening we need to get in there and like, is it something we can sort out or is this really he’s either tired of this now or it’s really wasn’t a good idea.

Keenan:
Ending is to try something else. So eventually he got to the right place. But it is, it is different than someone just saying, “Yeah. You know, I don’t like cleaning”, and the person’s been cleaning, but then suddenly they’re not doing as good a job or not showing up on time when, you know, they’re very punctual. These are all, this is all communication. It’s just different. G

Genia:
Right. Linking back to the person-centered thinking as an ongoing process. Yeah.

Genia:
Hey there. I just wanted to take a minute and let you know that in the first year of the Good Things in Life podcast, we had nearly 10,000 unique downloads. Imagine the reach we could have if each person who found even one episode helpful shared the podcast with other parents. Imagine the number of parents who could have an ‘Aha!’ moment or experience the affirmation of knowing that they’re not alone in believing that their son or daughter has gifts to give the world. Or that moment when someone has given the words to express something that they’ve known but couldn’t explain. Or a parent finds a strategy to improve the school experience, create opportunities for friendships to develop or find a place of belonging on a local team or in a club. By subscribing, rating and reviewing and sharing the podcast, you will help another parent just like us to support their son or daughter with a disability to access the good things in life. Thank you so much. Let’s make a difference together in 2020. Subscribing rating and reviewing the podcast is pretty straight forward. There will be a link in the show notes for this episode and that will walk you through the process. It will take you less than one minute.

Genia:
Okay. Next principle.

Keenan:
Let’s go to authentic valued roles. That traces back to, and I can think of some conversations years ago. We were working on a theory of change process and we had like a coach and she was really challenging as well. Isn’t, you know the group programs some agencies have in what you’re doing, it’s just different paths the same thing. Cause if you go through the group program or you’re in a shelter workshop or whatnot, well it’s just a different way to develop relationships and, and to have responsibilities. And so we were like, okay, it’s not the same, but I see what she’s trying to make us do. Like how is it different? And one of the ways we were able to explain that is this whole concept of a, of an authentic role. So if our agency creates a role and gives it to you, that’s not authentic.

Keenan:
So I can create a work like environment within an agency atmosphere or I can give you ribbons and certificates for something you do in the program. But those are, you know, highly artificial roles and, and recognition and all of it. And so we just really looked at authentic rules in the sense of people with and without disabilities, what are authentic experiences and authentic roles that people play. And that we, that’s what we support for the people that we’re involved with. And so it’s easier. Just because we don’t have good programs doesn’t mean we can’t find ourselves doing inauthentic things. So as a team, we still challenge ourselves around decision making when you know, we’re trying to make something happen for somebody and then maybe it’s easy as a staff member to kind of take a lot of things upon yourself and make it happen.

Keenan:
And then the [inaudible] a situation. But actually it’s not very authentic because our role in making that work is, is way too omnipotent or whatever the right word might be, but we’re just way too visible in the situation. And so we got the person to there, it has the appearances of something authentic, but really if we dial up back they don’t own this. The environment they’re in hasn’t really welcomed the person and, and we’ve made it happen. So even though we got rid of some of the sort of institutional trappings of developmental services, anyone can fall into where they’re kind of making things happen as agency or as a staff. And it’s lacking authenticity, which means in the long term, the person isn’t being genuinely valued and doesn’t have genuine relationships, so it’s going to fail. And so in our rush to make it happen we created a new problem. So it’s an ongoing problem.

Genia:
Yeah. And we’re going to be, Good Things in Life is coming out with some additional resources on the concept of social roles and valued social roles. So you’re bringing this up at a really great time because the, the idea of so, or that concept sociological concept of social roles and valued social roles isn’t something that we can do justice to during this during this interview. But it’s a, I think one of the, one of the, it’s absolutely fundamental to accessing the good things in life our valued social roles. And what I interested me about what you were saying about some of the, the trappings and difficulties that can happen when you sort of create a role for somebody. What I was thinking about is that there are rules that are just ascribed. They’re just given to people. So there are lots of honorary roles, for example, or you know, I have a nephew, I barely know. You know, he, he lives across the country and, you know, we were not close.

Genia:
I’m still his aunt. I still have the role, technically. But it’s not, it’s not, so there are ascribed roles. What’s interesting about what you were mentioning around the work roles is that in the, in the general world, outside of human services work roles are not ascribed. So if you look to sort of what happens typically for people and you look at what’s happening within a service for, for example, around work, if there’s a major disconnect between what is described as opposed to applied for, earned, and filled, then you know, you’ve fallen into that that traffic that you’re talking about. There’s just a, yeah. Okay. So I’ve lost track of where we are in our principles.

Keenan:
That’s okay. We’re onto community first approach, which I think is closely related. But one of the jokes that I like to tell in reflection of some of the silly things that we did in the past was of course and family members bring this stuff off in there and sit in fitness. Their child may not be, but nevertheless, let’s just say in the abstract, everyone’s interested in fitness. And so back in the day we had the group program. And so what did we do? We got a grant and we acquired a bunch of fitness equipment and basically traded a gym in our agency’s office where people came from all over Ottawa to come to our agency to use a treadmill, which is ridiculous because every community has gyms of all different types and sizes, private gym, YMCA. And so in a nutshell, community first approach is a person who genuinely says like, I really want to work on fitness.

Keenan:
Or we find the gym in their community that is best suited to their personality and has the right culture and help them become a member and a valued part of that gym. Rather than coming up with some nonsense where we parallel create something to, to fit that vision. So, and then he just takes that same logic and just applied to everything. So as soon as someone identifies something that an interest or a pursuit, it’s our job. Like where is that in the community and not just that, like it’s not about dropping someone off at YMCA and saying, “There’s your gym.” It’s like a really thorough investigative process. Typically. Initially we do it without the person just because in some cases it’s easier to narrow it down and it’s, it’s obvious that we’re not denying the person opportunity. Like it’s just obvious this isn’t right.

Keenan:
And dragging them all over the city, they wouldn’t make a lot of sense. But get it down to a reasonable list of opportunities, it could be, you know, different theater groups, different art groups and dig into, you know, is this someone that’s really into cameras in terms of everything about a camera, everything about photography. They would love to talk about the technical aspects of photography. Or is this a person they really want to take pictures with other people and that is really what it’s about. I want to be in a community of people that takes pictures versus some of them wants to be in like more of a camera club. So that kind of investigative effort and come up with the right group or group of people to approach or a venue to approach in the community, then we would support making that happen.

Keenan:
And that varies obviously. If it’s Phil, it’s very different because even the process of how he would apply to be in the club, how he would attend just first meeting or first gathering, that would be really different. From other people, that support might be entirely background. They would go there the first time and they would need very little support. Whereas perhaps with an [inaudible] and communicator or someone where we anticipated other challenges, like they might need a little bit of help with actually using the camera or communicating. We also do some what we call matching, which is look for other people in the community that’s sharing interests. So is there another person that’s looking to join a photography club? And they could go with Phil and they would know each other before they got there. That’s a whole other story how we do that. But that is essentially, we do whatever we can to support people to access regular venues and in their own community.

Genia:
Right. And so, and parents of young kids are making these decisions all the time. You know, we’re recording this interview at the end of at the end of January, 2020; parents are going to be starting to think about March break. You know, and what choices are we making around how we support our kids during that week when they’re not in school? What school do we choose or what program are we choosing for our kids in school as we move towards the summer? How are we considering daycare and summer camp and those kinds of, of choices. And one of the things that I have learned over the decades is that there will always be first in line and most obviously available a segregated option. Like community first needs to be something that you choose preemptively, not in response to what is offered. Like not, not just choosing from what is first offered to you. So yeah.

Keenan:
Yeah. We’ve had unlimited access like our own municipality. Like Ottawa is a, you know, if you look at it globally, it works a pretty wealthy, abundant community. And one of the downsides of that is they have traded all kinds of segregated things cause they have the money to do it. And it’s really difficult even trying for years, like stop sending us these ads every year for the special needs camp. We want the ad for how anyone can join your camp and have the support they need, but it’s not winning that battle.

Genia:
Right, right. Well, you might not be winning that battle, but individual families are. Like, it’s not like within the city of Ottawa, there are no families who have found that if they just approach their local girl guide camp or YMCA camp or whatever, that that they have, you know, that people are, people are finding welcome in community first approaches. And you, you’ve talked about, you know, how we go out and approach people or how you go out and approach people and you’re, you’re just like spoon feeding me the upcoming content in Good Things in Life in, let me think, March. So February we’re going to be talking a lot about social roles and valued social roles. In March Al Condeluci is coming back to provide a teaching on, you know, gatekeepers, finding those, finding those key people within an organization or a social sphere that can help us to sort of bridge entry and a place of belonging and welcome for our sons and daughters with disabilities. So perfect. Keep going Keenan. We’re on the same page here so far.

Keenan:
That is perfect and I’m glad you brought up Al cause he’s obviously a huge influence behind especially the community first approach and the roles. So, okay, Al, you’ve been acknowledged. And barrier-busting technology, that’s an easy one in a sense. But as you’ve discussed on your own learning curve of everything that you’re doing now, technology and all the support that you needed. And now you’re an expert and could teach other people, like we just continued to be blown away by some of the results of supporting people to use technology. In particular right now, the voice assistance is really changing everything from the perspective of how do we get out of people’s face and literally out of their space for things where let’s face it, like I paid person or whatever it is or a family member has been arranged or however this is happening, that someone’s in their living room and naturally because there’s something they need support with that we rather all not be there.

Keenan:
Whether it’s reminders to take a medication or some maybe a concern about safety or stoves or whatever it is, locks, keys. We were having so much success with just using you know, smart home type products and things to tackle every problem like that and like, let’s just try and solve it. And sometimes we’re still, it’s not so often, we’re still trying to figure it out, but other things, the ability just to, you know, remotely program reminders for people or respond to questions or leave messages people can get at their bus schedule, they can do their grocery list. All of these things we’re using with voice assistance and it’s getting us out of people’s face and also obviously putting them more in charge of their own life. It doesn’t feel good when you need help with your grocery list. Like everyone would rather like, I can make my own grocery list and so it’s helping people feel a lot better about their own abilities, which are always there, but we just didn’t have the tools for them to be in charge.

Keenan:
And so that’s just exploding and it’s only going to get better, which is the good news. It comes with the challenges, like of course there’s safety risks and everything else. So every new opportunity brings with it some new risks. So we’re managing all of those things along the way. But, you know, we’re beyond, but that’s like a choice. We are not going to be able to deny technology that people disabilities. So we’d better [inaudible] now that you’ve been embraced it to this degree, I’m sure it gives you lots of insight into how to support your kids around these different issues. And so the more we invest in it, the more we can not only help people use it and have success, but we can also protect them by not going, “Oh I don’t even know an Instagram is. Like we need to know.” And that’s how we support people. So that’s been exciting charge onto the last one, which encompasses everything, which we actually forgot. You’ll see posters and postcards in the world that have six principles because we forgot to say that honoring personal autonomy is the overriding principle that supports everything.

Genia:
Well done on admitting that. Little bit of humility is always a good thing when we’re, when we’re working on making it getting better.

Keenan:
It wasn’t as bad as building our own gym, but yeah, it was a major oversight.

Genia:
Well said.

Keenan:
It wasn’t a major oversight. And you know, the word autonomy is I think the right one. Cause we’ve, we’ve struggled with confusing people around, you know, the word independent gets used in our sector a lot like independent this, independent that. And that can confuse people that it somehow means like doing it all on your own, which [inaudible] really does a lot of things completely independently of others. So it’s an interdependence, which is an outcome to Lucy term, but sometimes people don’t get that either. And so we really focused on, it’s really about autonomy, which is whoever that person communicates, whatever the highest degree of control is possible for the moment, that’s what we’re aiming for. And then it’s a moving target that just because right now their ability to shop and cook for themselves or you know, whatever it might be, right now it’s at this particular place, but that’s not permanent.

Keenan:
And we anticipate working with the person and that they will continue to increase their autonomy in that area. So we’re just always looking to honor that. And the challenge are, you know, as an agency to challenge our discussions and decision making around are we honoring that because let’s be serious. So we care about the people we’re supporting and sometimes they’re heading down a path that we’re, we’re just worried for them. And so we have to walk that line carefully. It is not our job to try to coerce people into choices that we prefer if it’s, if it’s not illegal in which case some different things keep getting where we have responsibilities we’ve agreed to around an illegal activity or someone’s in danger that said some different things in motion. But if it’s just a choice that we, you know, we don’t think is the best choice, that’s not our job to coerce them or stop them.

Keenan:
It’s our job to support them. If they ask. It’s, you know, obviously making them aware of alternatives helping them make the most informed decision possible. But we do get put in some difficult spots where we get, we get asked, “Can you stop them from ordering pizza or can you make them go for a walk?” And it’s like, “Well, no.” If they want to talk about fitness, we can look at what’s out there and maybe they, there’s things they would enjoy more than what they’ve tried before and we can offer that and support that. But no, we can’t make people work out. We can’t make people eat differently. We can’t make them not hang out with, with Jenny. It’s their choice. So that’s something we have an important principle that, and important discussion to have with family members that we aren’t a parallel or substitute family member that may have a different role around how the person’s autonomy and a different influence in a different relationship that we’re there to support that person. They’re in charge of their support. We can’t dictate. Yeah. It comes for them.

Genia:
Right. Yeah. We, it is interesting the, I mean you’re coming from this from an organizational perspective and I think it gets more, not less complicated if you have a personal relationship with somebody. You know, I, so autonomy I think as a, as one of the core principles is really important regardless of what your relationship is with somebody. Everybody should have reasonable autonomy in their lives, given their age and stage in life. But I always, but it does lead in many circumstances to conversations that extreme conversations about choice. And one of the things that I always that I always, a story I frequently tell about this is that people who are loved well don’t get unbridled choice because the people who love them will stand in the way of poor choices. When I was in my very early twenties, I had experienced a bout of depression.

Genia:
And the perfect example of this is that I, well first of all, I hate getting up early in the morning. That’s just, I’m just not a morning person. But during that period of time, getting up and maintaining a reasonable schedule and getting some physical activity was really important to my recovery from this bout of depression. And my sister woke me up every morning to get up and go for a walk. Maybe it was only three times a week. My memory of it was that it was insistent and every morning. And she held my butt out of bed, you know, early in the morning to make sure that I got up and that I went and did something that was healthy and that would help me in my recovery because she, because she loves me. And so there’s this balance between the tendency for people with disabilities to be denied reasonable and appropriate autonomy and choice.

Genia:
And I think the extreme version of that which is that people should have unbridled choice and that we are somehow violating somebody’s rights as family members if we intervene when we see them doing something or not doing something that is, you know, of concern. So it’s, it’s a tricky one. Like it’s not a, it’s not a blacker. There is no world, no version of this world in which it is a blacker or white issue. And I encourage people to not reduce it to such because I think it minimizes it, it trivializes the importance of it.

Keenan:
It’s the biggest challenge to the, like the family partnership because, like how do you make that subjective decision of when a decision or activity or whatever a person is engaging in gets to the point where, “Yeah, we signed on that this is a private relationship.” And yet we’ve now reached the point where we absolutely have to engage other people in this person’s life and talk about what’s happening and, and we need intervention. And it’s not always, I mean we don’t, we don’t have group homes. We’re not observing people 24/7. Like there’s people we see, you know, say four hours a week and it can get really difficult to discern some of these complex things that are happening in the community and to figure out like, when is the right time to go, “Hey Jeanie, I think we got a problem here.” You know, and if we aren’t careful with that, the other thing that happens is if the person starts seeing us as just like a conduit to other people where they’ve said like, “This is private, I don’t want this shared”, it also gets complex because if we violate that relationship then they’ll just stop talking to us. And then we’ve all got a new problem, which is now they’re not communicating with anybody. So we’re always walking that really difficult line of how do we keep the person’s trust at the same time as exactly what you said. There are points when there’s interventions that are needed and we have to make a judgment calls. So you’re right, it’s not black and white and it’s a difficult dance.

Genia:
Yeah. Agreed. Well, Keenan, if people were interested in connecting with you or learning more about LiveWorkPlay, how would they, how would they find you?

Keenan:
Yeah, well we have our website at liveworkplay.ca and it’s brand new and the contacts page is there and I’m a pretty accessible guy. People have some kind of vision of some sort of executive director guy that doesn’t talk to people. It’s not me. And you can reach me by the social media venue of your preference or the telephone works, email, and that’s all on our website. And also if you’d rather just look up at information or there more about this. There is a whole video series on YouTube, which is connected through our website. There’s a honeycomb that says the seven principles and you can just check that out. It’s got the transcripts and everything if you are more of a reader.

Genia:
Excellent. And we’ll make sure that the link to the website is in the show notes for this episode. Keenan, thank you very, very much. I really appreciate you joining me on the Good Things in Life podcast. And thanks so much for outlining the principles that people can use then to consider Just Enough Support for their son or daughter with a disability. I appreciate it.

Keenan:
Excellent. Looking forward to your next podcast. It sound great.

Genia:
Excellent. Thank you so much.

Keenan:
All right.

Genia:
Thank you so much for joining me today. I’d really like to encourage you to subscribe to the podcast on whatever platform you use – iTunes, Spotify, Google Play. If you subscribe to the podcast and you have an easy way of making sure that you never miss an episode and one of the things that I’m going to be introducing in 2020 are bonus episodes. Often those bonus episodes are going to be stories from parents or others. But stories about the individual lives and successes and struggles of people. Those bonus episodes are really going to be awesome in helping us to see how these concepts operate in real life. You know, not just talking to talk but how it happens when we walk the walk. So go to the show notes. Wherever you’re listening to this and subscribe to the podcast. I won’t be emailing about these bonus episodes. The only way that you will know that they are there is if you have subscribed. And I look forward to hearing your feedback on the upcoming bonus episode on applying a Just Enough Support approach to supporting our sons and daughters to lead the lives they want. Until next week. I hope you are very well. Thanks for joining me.

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Special thanks to Keenan Wellar for joining me this week. Until next time!

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