Embracing Independent Living for Young Adults with Disabilities

Genia  (00:00:02):

Welcome to The Good Things In Life podcast. I’m Genia Stephen. Things in my life have been pretty intense in the last few months. My sister has been in the hospital, we’re still on the middle of a pandemic and I’ve reached out to my community and I’ve asked for help. Inclusion Academy members have risen to the occasion. Inclusion Academy, if you don’t know, is Good Things In Life’s membership, monthly membership, where we meet with experts in the field of disability and we have a community. And so members have really shown up to say, these are the people that I would love to hear on the podcast. And I’ll interview them for you. This episode is one of those interviews. So Carrie, a mom and Inclusion Academy member is interviewing Lynne Seagle. And Carrie does some introductions, but I just wanted to add a couple of words about caring parents.

Genia  (00:00:58):

We do our best. We often are doing our best with incomplete, always, I guess, or doing our best with incomplete information. And one of the things that Carrie has been really working on in the last few years is expanding her access to opportunities, to ideas, and really challenging herself to think bigger and more broadly about the way she supports her daughter to build a good life. And this interview for Carrie, I think is another example of the work that she’s done to really push the boundaries around her own thinking. And I just want to tip my hat to Carrie because I think that that’s a hard thing for all of us to do and an important thing for our kids. So thanks Carrie. And I’ll let Carrie and Lynn take it away now.

Carrie  (00:02:04):

Hello and welcome to the Genia Stephen, Good Things In Life podcast. I’m Carrie Ahrens. And I’m your host for this episode. I’m an, a wife and mom of two adult children living in Mississauga, Ontario, Canada. And for the last three and a half years, I’ve worked with community living Mississauga on a parent engagement project in [inaudible] funded by community living Ontario. Our group is called The Parent Connections Help Parent Group, and we’ve grown to connect over 200 parents. I’m originally from Parry Sound Ontario. So then, um, I missed the lakes, rocks trees, landscape that that area provides. And I also enjoy a well equipped workshop and being on the water. And most of all, talking to people today, I have the great pleasure to have a conversation with Lynn Seagle. Lynn has been, uh, began her career at hope house foundation in 1978 as Director of Residential Services and has been their Executive Director for more than three decades.

Carrie  (00:03:02):

Um, under Lynn’s leadership, the whole post has become internationally known for its innovative person centered approach. One of her proudest accomplishments was guiding them through their transition to group from group homes to supporting people in their own apartments in the early nineties. In other words, Lynn gets it that everyone including, and especially our sons and daughters need a home among everybody else where they belong, where people get to know their names. They need a role that’s meaning, uh, has meaning in, in order for them to contribute and they need to have family and friends enrollments to fill in the gaps. And that’s what creates community. And only with everyone, will it be an inclusive community? So welcome Lynn.

Lynne  (00:03:45):

Thank you. Thank you for having me, Carrie.

Carrie (00:03:49):

Well, it’s just been a joy, um, to even consider this conversation. So, um, the first time I heard about you and The Hope House Foundation was two and a half years ago and it was through a podcast and, uh, it really impacted my thinking around expectations and planning for my daughter. Um, you use stories and there’s just such power in stories for learning. And I, I really gravitated to, um, your approach and your, uh, the way you explain what was happening and what you’ve, you’ve been involved with. The other thing I noticed is that on an institutional level, um, you have been doing the things that parents really want to do for their kids. So, you know, you parallel the things that we’re thinking. And sometimes we get a little off because that parent within us becomes all protective and, and, uh, unfortunately almost isolating and all the things that, you know, you were trying to, to work, um, to free our kids, uh, from. So, uh, one of the things that struck me in what I read, um, in some of the newsletter writings that you did was that the, there is a huge importance of learning how to listen.

Carrie  (00:05:06):

And, uh, you had said that, um, that when you look back and you contemplate the decision to close all of the group homes in favor of supporting people in their own homes and apartments, it was not because we were so ahead of our time or that we were exceptionally innovative. It is really quite simple and basic, we simply listened. Yeah.

Lynne  (00:05:27):

Yeah, exactly. Well, you have to start with asking a question, right? Um, I think in this field, we’re very good at surveys and satisfaction, questionnaires and so forth, but do we really listen to people with disabilities and their families, um, and, and truly hear what they’re saying? I think we are less skilled at that.

Carrie  (00:05:54):

And, and as parents, you know, we have our own agenda to keep them people, our kids safe and keep our kids doing what we think is the best for them. And we forget that in order to have your own life, I really have come to believe in the next, last little while that people have to have their own home away from their parents in order to really have a life.

Lynne  (00:06:18):

Yeah. And I have talked to numerous family members that are quite literally shocked at who their son or daughter is separate from them, you know, um, you know, things that, uh, family members thought people would struggle with. They spread their wings and sort things that they thought they would be just fine with, you know, like, Oh no, he loves bacon and eggs every morning. What he’s eating pizza for breakfast. So, you know, it also provides that great, um, uh, viewpoint of seeing someone in a whole different light, just like what happened for my mother, you know, when I left home, you know, the person that I became and things that I liked that, or decided I disliked was all evolving. So she was getting to know me differently as a separate human being, from living with her as a child. So I don’t think it’s any different for people with disabilities.

Lynne  (00:07:27):

I mean, the one thing that I will note that seems a little different is when people with disabilities live in their family home, say until their thirties, um, some family members are shocked to see when they move out and have their own place. That it’s almost like the teenage years, you know, which, you know, looks similar for me, you know, but it, but I was 19. Right. You know, uh, so it may happen a little later, but those, uh, those feelings and need to explore and to test and determine who, who am I, and what, you know, that doesn’t change.

Carrie  (00:08:09):

I would agree. Um, one of the things that, that you had said was, um, like there’s no new tests and there’s no permission needed to direct your own life. Like, and I think as, as far as parents go, sometimes, you know, that’s what we do. We try to direct our kids, our kids’ lives. And unfortunately, because of that, oftentimes their life experiences like this big instead of this big, and because of that, a lack of experience, we chronically underestimate

Lynne  (00:08:40):

Own kids. Oh yeah. I mean, I think that it’s not just family members that do that, but society in general, uh, chronically underestimate people with disabilities and rarely overestimate their abilities. And you’re exactly right. I mean, what, um, I mean, there was no test for me and I’m sure if there was a test for me to have my own apartment, I would have failed it miserable. And, um, yeah, I think, I think you have to start with the basic humanity of the issue and get out of this industry talk, which, you know, uh, I think the industry in itself taught that family members too, um, about diagnoses, models of care, assessments, limitations. I think the industry taught families that I think at families had been left to their own devices with out this whole system that you would find that things are less problematic.

Carrie (00:09:43):

Yeah. I would agree. Like we, we, we just take in what’s out there and unless we’re, we’re focused on something else or we have new information to go on. Yeah. You know, that’s the only way we can kind of move forward for them. So yeah, it’s, um, it’s a real challenge to figure out what to pursue sometimes because there’s a lot of people talking at you.

Lynne  (00:10:08):

Well, exactly. And so from the moment of birth for family members who have a kid with a disability, um, aspirations and dreams and imagination sees this, this system creates don’t, don’t be thinking like that. You need to replace all of that with worry concern, um, scarcity of resources, lack of celebrations. That’s what to replace it with. So is it any wonder that we get to this point?

Carrie  (00:10:43):

Yeah. Yeah. So, um, I’d like to go back to that art of listening and, and you had made a statement that your, um, organization has a culture of listening and you actually train your staff to listen. So I’d love to hear more about that because I think as parents, we need to really listen better to our kids and know how to ask the questions and then step way back so that they have some air to breathe, to actually answer them.

Lynne  (00:11:12):

Right. Um, yeah, you can’t get what you don’t give. So we, uh, had in place in 1978, a management philosophy, and it’s called Participatory Management and simply put, it means no decision shall be made that directly or indirectly affects you without first hearing what you think. And it sounds so basic, but it’s quite complex to put in place and have the discipline to keep it in place. So any policy decision or expansion or change in health insurance, I know you Canadians don’t, don’t relate to that. Um, any of that requires us for anyone affected to weigh in with an opinion and to hear it. And what we’ve learned is that people don’t necessarily need to get their way. They need to have their say. And if you treat, uh, staff members, employees direct support professionals in this manner consistently, it’s much easier for them to transfer that to people with disabilities. Being heard, being seen, having an opinion that is maybe different from your own or others, you know, and not judging that. That we found that connection, you know, voice matching touch has been paramount.

Carrie  (00:12:47):

I can see why, like the expression you used, it’s equivalent to two. You give what you get, but you said it much more eloquently. Um, yeah. Listening is, especially for parents, I think is really, really hard because in the backs of their mind, they want to be a good listener. They really want to make their kids happy, but they have all this construct around them as far as what they know will make their kids happy.

Lynne  (00:13:18):

Exactly. And I don’t think that that is, um, just for parents or family members of people with disabilities. I am very attuned to my mother. And if I’m talking about something that I know I can tell, she doesn’t even have to say it that she disapproves, or she doesn’t think that that’s the way to go, or she doesn’t want me to do that. She feels like that’s too much for me. You know? I mean, you, you know this, I mean, what person are you closest to? Who do you know better? And I think people with disabilities pick that up too, you know? I mean now sometimes yeah. They know what’s going to really tick you off and they will impose in that button. But I mean, it’s hard to just seem impartial in those kinds of relationships. Right. Very difficult. Whether you have a disability or not, whether you’re a parent of a kid with a disability or not, I think that’s universal.

Carrie  (00:14:17):

Yeah. Yeah. There’s, there’s because it comes down to our kids are our people and we’re all human and we’re fallible and we’re certainly not perfect. And we say the wrong things and, Oh my goodness. We were thinking down the wrong path and it becomes very complicated.

Lynne  (00:14:41):

I think, uh, I mean, some of the advice I’ve given family members is stop with the low expectations, start with high expectations and prove yourself wrong. But at least start there. Yes. He will be employed gainfully. Yes. He can live in his own home with the right amount of support. Yes. He will fall in love. Yes. There will be people unpaid that will want to be around my son. Start there.

Lynne  (00:15:15):

Most

Lynne  (00:15:16):

Family members don’t start there.

Carrie  (00:15:19):

Yeah. Yeah. It’s yes. That is correct. Expectations are huge. And I found the other element of, to that Lynne where we’ve had success is just to get out of the way, create, create space mostly out of your own home and just give them space to, to do what you did when you left home. Uh, you know, I can remember I left home. I think when I was 18, went away to school, um, never really came back, uh, except for little intermittent parts between either like different school or, or, um, yeah, like at once you were gone, you were gone and you figured it out. Yeah. And that’s, that’s just the way it was. It’s less like that now because people are always texting and like long distance was, Oh, so expensive because you didn’t even call because it was so expensive. I didn’t have a cell phone. You didn’t have email, you had letters and they do get there. Exactly. We were so much more far removed from what was going on. And my mother and my father didn’t know what really had a sense of what I was doing. They moved me there, like through all the places that I lived, exactly what I did there and what happened. Like, unless I ran out of money, uh, they didn’t really know what was going

Lynne  (00:16:54):

Exactly. I mean, I think also be living in your own space and, and creating your own life. It allows for a reciprocity as well. I mean, when you get to a certain point, it’s you having your mom over for lunch. Or you hosting Christmas this year and that’s something that I think we overlook the need for that reciprocity as adults, you know, that you move from being that kid to doing something like that. And also, you know, technology. Yeah. It can be a double-edged sword, but the technology available now in regards to safety and, um, you know, aging in place. I mean, that’s, who’s really driven the technology boom of home security has been people, the elderly who’s who are saying, ah, I’m not gonna go to a nursing home. You know, I I’m going to employ as much technology as possible to age in place. Well, those very same mechanisms, apps, techniques, um, apply to people with disabilities as well. And you know, the disability field is woefully behind in the use of that technology woefully behind, you know, we’re still doing things in very old-school ways. Yeah.

Carrie  (00:18:23):

It takes, there’s some ships it’s really hard to turn. And, uh, the people maybe also providing those skills may not be technology kind of people. So I think that impairs the whole process of integration into, uh, into somebody’s like how you live your life. If you’re not living it yourself, then it’s hard to vision what that might be like in somebody else’s life.

Lynne  (00:18:48):

Yeah. You got, I mean, just like before technology, uh, people who used wheelchairs trained the people that were helping them, how they transferred, you know, because it’s very different for different people, right? Well, it’s the same thing needed in the use of technology, whether it’s a door opener or smart home technology, it’s the same thing. People need to be trained to understand it, to be able to use it and to know when it’s not working as well. I mean, it has to go that way. I mean, we have, we support, um, a gentleman right now who was living in a nursing home and he, uh, he uses a very large power wheelchair and does not have movement beyond his neck down. Um, and he, he never thought that he would have a life outside of nursing. Um, even though he was miserable, well, it was his brother.

Lynne  (00:19:44):

Once his parents passed away, it was his brother that said, this makes no sense. You’re 34 years old, you know? And for 10 grand that his brother paid for, um, through us, uh, installed, um, smart home technology. So Jesse can now pull up to his door and say open sesame, the door opens, he says, close estimate. Roseanne says, turn on the lights, adjust the thermostat, turn on CNN, call my brother all about stuff. And, you know, I said to him, uh, not too long ago, I said, you know, Jesse, we really should tell some of the legislators here, this same, so much money over a year because you do this several times a day. Do you know how much staff time would cost? And he said, Lynn, I mean, I know you care about that. He goes, but what I care about is I don’t have to wait anymore. I just don’t to wait.

Carrie  (00:20:49):

Yeah. Waiting. Yeah. Like you can live. Yeah. Like, yeah, because if you’re waiting around for somebody else, you’re just, you’re just sitting there and you’re not actually living. You’re just putting in time and, and you want to talk about building dependency and who’s in control of your life, you know? Uh, that’s a good way to do it, you know, and I’m not blaming stuff. I’m saying, you know, five minutes when you want the thermostat adjusted, waiting five minutes, you’re still cold for five minutes and you, you don’t have the power of that change. Like it, which to us, it would be like ridiculous to not yet be able to have control over ourselves or the environment that we’re living in. Correct. Um, it it’s uh, yeah. Technology is, is, um, we got our daughter who is 21. She, um, uh, a cell phone in the summer and the amount of motivation she has to figure that all out and to then use that, to have her own relationships is just amazing.

Carrie  (00:22:08):

And when you think back, do you think, why did we wait so long? Um, because things skills came as you needed to develop them in order to do what everybody else was doing. Thing isn’t, it always comes from outside, you know, programs or family homes. It’s external. It’s not, it’s not inside the home. Yeah, absolutely. I remember your story about, um, was it Willie and he worked at the dock yards and just the comment from a waitress saying, you know, you’d look pretty cute if you lost a few pounds. Well, you know, like in that, that sort of social influence, you know, is, is something that no parent know, like it just doesn’t happen. Other than through that sort of natural exactly. Natural way people go, Oh, well maybe I have a reason to, I have benefit at the end of this, this, um, this thought pattern, you know, outside of just me and how I want to live. Uh, so, and I think we base our expectations on what we’ve seen as far as motivation. And sometimes if someone’s not happy, they don’t have motivation about anything. So when we can actually provide, uh, and they are kids pick up on the fact that they can take that part of their life back yeah. And grow it, then huge motivation there. And it’s so exciting to watch,

Carrie  (00:24:01):

Like, you know, the stories I get tower, uh,

Carrie (00:24:05):

I thought things were going one way and, you know, some, she sent a text to somebody else and it clearly was going a different way than I expected. It should be. The mother shouldn’t know exactly what the kid is thinking because she has her own thoughts in her own way of doing thing in the way she wants to live her life.

Lynne  (00:24:25):

Right. And, you know, privacy, you know, everybody wants privacy. It’s not just physical privacy. Sometimes just like what you referred to it’s thought privacy, you know, I want to be able to think without having to tell everything I think.

Carrie  (00:24:44):

Yeah, exactly. I also remember, um, you were talking about a gentleman and, and, uh, trying to convince him to go to a meeting, uh, like a update meeting. And, and, um, he had just said, you know, I’m not going because they’ve got the goods on me when we have these binders of, of details in say a group home situation. And people know what things that we would never tell anybody about how we lived, or like in the future, what we were thinking like who we affected that is deeply personal, yet very public information for people with a disability that where people are trying to help them in a certain context.

Lynne  (00:25:32):

And, you know, even if we were described in certain ways, we wouldn’t never be described in the kind of language that people with disabilities are described as, you know, um, whether it be, uh, perception ever rates on. I mean, I would be described as really, really loves to read books and list the books she reads, you know, no one has ever set up, I persiverated on listing all of the books. So it even sounds, you know, not only are you right, that, you know, this kind of public information about yourself, but even the way it’s described makes you different. And somehow that doesn’t feel good either.

Carrie (00:26:21):

Yeah. And I, you know, The Hope ho who posts, um, Foundation approach to, to giving people or providing it, to develop what they need, that, that, that what they need and what they want, like in really understanding that. Like, and I love, I love, I actually re told your story about, like, when people ask me about a podcast, I say sent to this one, cause it’s all about, um, uh, just, you know, people wanting their own place. Um, like when you changed the question, that was the thing, change the question of, do you like living here versus how do you want to live? Like what a powerful way to ask the question and get the three simple answers that anybody else that you were talking to in the world would probably say

Lynne (00:27:12):

Exactly. I mean, that, that was the, how ironic that is that, you know, we, we feel at the time when we did this, we were like, Oh wow. So people want their own home and a, a job where diverse people work and friends and romance in their life. Wow. Let’s look at all our perfect program plans and see how many address that.

Carrie  (00:27:36):

Well, not, well,

Lynne  (00:27:38):

Isn’t that incredible because you’re right. Those are basics basics that you could ask almost any human being and they’d hit on at least two of those three. And yet, you know, in 1984, it was a phenomena to us. Because I think in a large part, we had been in these programs versus helping people have a life. We were running great programs, but we were not helping people have a lot.

Carrie  (00:28:13):

And when you think about that, I was thinking about, um, just when we move out and, and how life kind of builds around us. Well, you think, okay, so, so we have friends, we have, um, but we don’t see our friends all the time. We have a job, but we’re not working all the time. So, you know, sometimes we think about, you know, how are we going to support our kids in their own home? Well, you know, laundry takes a long time and cleaning takes long time, and meal preparation takes a long time, and shopping for those foods to prepare. And it’s we kind of forget all the things that fill up our lives. Part of it that we can have interest in. What we’re cooking we can build is around that, we can, um, you know, take an interest in, in how we care for our homes, our possessions, and maybe we’ve never had possessions that are, were totally hours before. We get to appreciate those things and be thankful for them and figure out how to, to care for them and have that role of a home owner of, uh, you know, someone that likes to cook and, and it gets good at it.

Carrie  (00:29:30):

And, you know, then, like you were saying, the whole hospitality thing. Hospitality is a huge measure of that, ive got a home to share. That I have that role and I can fulfill it because I can, you know, figure out and do my own groceries and, you know, pick something to serve and make people look good. And at whatever level that they’re capable of, but everybody eats, everybody sleeps.

Lynne  (00:30:03):

Yeah. And I mean, I think also when you support people and you’re not supporting them in the context of the group, but you’re supporting them truly as just them, you don’t tend to over support and you don’t tend to under support because you’ve only got one focus and that’s that person. So, you know, they can plan their menu. They can go online and pick out all of their groceries. Uh, but they need help with lifting certain pots and pans. Okay. It gets very clear versus some program that says, you know, Dorothy will cook spaghetti and you know, all of that. I mean, naturally, yeah. I can see the pictures, pasta, you know, that’s what I want.

Carrie  (00:30:52):

That is so true. Oh, like we, um, I’ve got like 5,000 thoughts running through my head right now, because every time you say something, it, it reminds me that, um, you know, it’s not rocket science and the other big thing I thought was you have to live somewhere. Like I also have aging parents and, um, you know, doing our absolute best to keep them in their own homes. Right. Imagine that want to have them in their own homes because we know that’s a safe and good place for them. Um, and we, uh, I’ve lost my thought unfortunately, um, that you have to live somewhere. Yeah. You know, you have to live somewhere for, so, so what is that, that, that formula that you just mentioned that under support and over support, how do you, how do you find that? And, you know, as people are, are, as parents are thinking about putting their, moving their kids into a place of either of their own with the roommate and whatever, whatever that might look like, how do you figure out what is the right level of support?

Carrie  (00:32:04):

Like, and how do you move through that? Because one of the things that I, I get stuck in my mind is that, so we might say that we’re here, like it’s, it’s, uh, February, whatever it is, whatever it is, and we’re going to start here and then how do we make sure that we’re still moving that ahead? That we, we, wherever we can, we reduce supports. And I heard you say once that that life is messy. And, you know, if you fall in love, support goes down. If your mother dies, support goes up, like how do you actually implement that? Like, how do you, how does that happen? Well,

Lynne  (00:32:40):

I think you have to start with the fact that it’s not that straight line just as you refer to, you know, and the way the industry sets up programs or whatever, is it, it’s a straight line needs overnight support. Well, that stays right, but never get adjusted. There is no effort to say what kind of technology could be put in place where this overnight support isn’t needed. How do we test this overnight support? And whether it’s really needed, um, you know, how do we enable the, the home itself to alert when it’s needed? I mean, we don’t, we just say overnight support. That’s what he needs. And so to what you said, a life, it goes up and down. So the flexibility of services, funding, and resources going up and down without huge bureaucratic, um, processes is really critical for that to happen. Now, secondarily it’s also, um, what we found is people really knowing folks, you know, and, and families being open to seeing change, you know, families being open to people, their kids evolving. And like we talked about earlier, like liking different things, you know, or he, he doesn’t, he doesn’t eat, uh, anything white. Why does he liked mashed potatoes is now, uh, because the gal across the hall made them.

Lynne  (00:34:20):

I mean, you know, I mean, it is. I mean, I’m not saying that it’s a hundred percent of the scientific process. You know, people change, they change, they change when they age. They change when they first, uh, moved from the family home, they change when they get a job, and get exposed to different people change, they’re not static. And I think having a label that is disability oriented, it’s a myth that it means you are static. You are not human beings are not static. Like the earth that we live on is not static cyclic. And we respond to those cycles and the sun comes up, then it goes down low, and then it goes away. Yeah. We’re so tied to cycles yet. Like you just said, we all around us are these re those ones that binder, that yet I’ve talked to some family members who say, well, I don’t want my kid living in his own place because he’ll be lonely.

Lynne  (00:35:33):

That’s why he should live in a group home. Well, if you’re living with people that you had no power in choosing, and don’t need the particularly. Llike you can be very lonely and a crowd, you know, and what, what that loneliness, when you live in your own place creates is a focus for organizations, such as Hope House to focus on helping with that loneliness, you know, but who, who works on loneliness issues when people are living in group homes, they don’t, you got these three other people you’re living with, how could you be lonely? You know, you’re going, you may be going crazy, but you’re not lonely, right?

Carrie  (00:36:22):

Yeah. Our definitions of, or our perceptions of, of just people being there. It is not, not the same as, you know, people wanting to be together. For sure.

Lynne  (00:36:34):

I mean, most people without disabilities struggle to just live with one person and that’s the person they love, you know? I mean, so it seems ridiculous that we set up these well, we keep running these group homes. I mean, that, that were the original reality TV shows. Right. And keep thinking that they work. I mean, I think we know they don’t work. Uh, but we, the industry is very resistant because we know the system. Um, we got it down path, right. And frankly, it is, uh, more challenging to support individuals really truly do support individuals. It takes more work. It takes more effort. I’m not gonna, I’m not going to pretend that it doesn’t. Um, but it’s clearly the right thing to do. And to keep pretending, uh, something you’re doing that is clearly wrong is right. Takes so much more energy. And the,

Carrie  (00:37:36):

Yeah. And it just zaps it right out of you. I can remember when my daughter was really young and I had discovered a place that I thought could really help that thought differently that had different protocols. Like, just look at them as a, as a whole kid, you know, and what they were eating, what, how, how they were exercising and developing physically how their social skills were going, all that intelligence, all that stuff. And I, I, you know, I can remember turning off the computer and thinking, I wonder what this will mean, but you’re right. You cannot once you know something. Oh my gosh, it’s exhausting. Yeah. To think like, he can pretend it. You don’t know what that anymore.

Lynne (00:38:24):

I know. Right. I know.

Carrie (00:38:27):

So, so true. And I wanted to go back to, uh, um, a thought and specifically for families that, uh, you were talking about supporting people in a group, and you only know them in the, in the context of that group. It’s the same as in a family, you only know your kid in the context of the family and, you know, especially with COVID and everything for the last few months, and we’re getting more and more accustomed to that, unfortunately, that you, I only know my kid in the context of living in this house and with the people that, you know, my husband and I, and when my son comes back from school with him and I’m thinking,

Carrie  (00:39:10):

We don’t even know who she wants to be, other than what she might indicate, uh, through happenstance. Almost like, um, she goes into a room and, and, and dances and sings, well, you know, clearly a great motivator. Like she gets more exercise out of that. It comes out all sweaty and because she loves it, it moves her and, and that’s part of it. So what would that look like out of the constraints of her own bedroom place and, and, you know, um, at dance class twice a week and yeah, yeah, it does get that. And, and the, um, the other thing is, is the element of a true friend. Like you only need one and that can make such a huge difference. And it’s so hard. Um, there’s a woman in our region, uh, Janet Gleason, she talks about building the context for relationship and, and how, you know, if you need support.

Carrie  (00:40:14):

Well, the support worker’s job is to get herself out of a job and like to be behind and introduce the, the, the, the person and make sure wherever you are, those people, those new potential friends, those, that social circle is seeing you, not the social worker first. And it’s a beautiful thing. Um, but, but one, uh, friendship and I’ve seen it because we, um, moved from, from having someone work for us and she couldn’t continue working. So she, she, um, still wanted to be involved in my daughter’s life, his life, and, and now Samantha has a true friend and we’re going to sit just more. I’m going to cry now, but I could just, it’s so impactful, but it’s really hard to make a friend when you’re always with your parents, you know, like, like you don’t, you can’t be you. And there you are.

Carrie  (00:41:11):

You’re we see her as, as our daughter, but not the potential friend that she could be, because she’s, you know, she’s excited to be with that person. She’s, um, she’s motivated to, to get on that phone and, and figure out how to spell and, and you know, what, I, my husband jokes, because he said, I was like getting texts from Samantha because there’s only three words, but you know, what gives means, you know, like, so, so it doesn’t take long to respond and, you know, and who doesn’t like straightforward relationships. Oh yeah. Where you can just see what you mean.

Lynne  (00:41:47):

Well, you know, COVID has leveled the playing field a bit for a number of people that we support with everyone having to be online. Right. Uh, inclusion has been easier. What we’ve seen is we have people that we support meeting up with people across the country. You know, with Hangouts or talent shows or whatever that they were not doing before. You know, they’re, you know, we were working with them on trying to get connected to where is their dance, a dance that is not just disability specific, or where can you go to, uh, play a trivia, even if you don’t get the answers. Right. You know, and be included now so much is offered online. In particular, we have a local gentleman, he’s a musician. And like, all musicians are out of work, right? They’re not, they can’t play in anywhere. Well, he’s hosting this thing called Carlos Community where people do videos of them playing music.

Lynne  (00:42:58):

And he posted every Wednesday. Well, one of the people we support, uh, got exposed to it and she’s on there every single Wednesday. And people, this musical community that really stretches outside of our own area. And even our state now are saying that was great, Laurie. I love that song, Laurie. I mean, you know, so, um, you know, not that I want COVID to stay, but I do think it ramped up for people with disabilities, a different way of connecting. And it certainly ramped up for Hope House foundation to get technology in the hands of people with disabilities, um, from, you know, just internet service to having an email. I mean, in our country, I don’t know about Canada. Most people with disabilities don’t even have an email address. Can, can you imagine, I mean, I bet you can’t find 10 people without disabilities that don’t have an email address.

Carrie (00:44:03):

Yeah, yeah, yeah.

Lynne  (00:44:08):

That this has been another aha moment for us that I think has been really beneficial. I mean, I don’t have that many silver linings about this virus, but that is surely one of them.

Carrie  (00:44:19):

Yes. Yeah. I would agree that. The other thing I noticed is that just like, as a parent, there is an abundance of resources that now accessible that you couldn’t even imagine. Well, I would have to have something real quick, get everybody organized, get in the car, go in there, get the information, you know, come home. That’s like a three hour investment. Now you can log in you’re there, it starts. You’re done in an hour or whatever. And you’re back.

Lynne  (00:44:51):

Exactly. Oh yeah. It’s going to change life as we know it. But I, I think it’s going to change for the better life for people with disabilities as well. Really good. I really good. The connections people are making alone. I mean, because no, no one can, um, no one is really going out and listening to me is over, no, one’s going to art shows or know who people who are real foodies, aren’t going to restaurants. Well, the groups are everywhere now and they want to connect. And it ain’t, as you say, it’s easy. You don’t have to deal with transportation and, you know, Oh, do we have enough staff or any of that log on?

Carrie  (00:45:38):

Yeah. Yeah. And I think maybe people will get braver as to what they want to, like, I’ve, I’ve heard different parents say that, that, you know, they really hesitated their kids maybe really hesitate to go somewhere and, and be involved there, try it. But this is so one step removed and that, you know, you can, you can look and see what it is, you know, you’re not physically there to be stared at or, or judged or whatever might be the thing, or, you know, you’re struggling just because of your limited life experience to figure out what that is and that you can just,

Lynne  (00:46:17):

And you don’t

Carrie  (00:46:18):

Have to really put out to discover it.

Lynne  (00:46:22):

Exactly. I mean, most people with disabilities are experience poor. Right. But with this advent of technology and especially forcing it with COVID, you can see, do you like opera? You can, you can watch someone learning how to ride a horse. I mean, yes. You’re. I think you’re exactly right about that. You do that next step. You get that a little closer to, Hm, well maybe, maybe I like the costumes. I wish I had that in my closet. Yeah.

Carrie  (00:47:03):

And it’s so, um, yeah, cause for all of us, for some of us, you know, new is, is scary and, uh, it just provides a non-scary kind of thing and, and the breadth of the things that are out there to discover that’s the other thing. So from a technology standpoint, so, um, and I go back to that just enough support because I struggle with trying not to smother, having huge expectations, but reasonable expectations. And so as a, as a, and I’m trying to find transferable skills here between, between your environment and me as a mom, but that just wants to, um, to look at all the resources out there and the people do it all over the place and provide just enough support. So how do we, how do we start as parents? So we say, okay, we, we actually find a place. Um, we, uh, we know what we need to teach.

Carrie  (00:48:04):

We get support people. Um, but how do you, how do you actually decide, uh, without a cause? What am I, my only thing that happens to us all the time is that we over a board and once you over support, it is really hard to pull back. Just so, so, but one of the friends that I met, she was, she had been born in Ontario, moved out to BC, came back with a family and, um, like a husband and all that stuff. But she taught me that the expression there’s dignity and risk. And so I, I try to, to put that forward in my mind that imagine the joy that will be in Samantha’s heart and her mind and confidence that that will build if, if she has not a risky situation, but you know what I mean? Like that there is, there is potential for it not to go totally. Right? Yeah.

Lynne  (00:49:07):

Well, life, you can’t be alive and on have risk. And I think we confuse risk with like the feel all the time it’s part of living now. Um, and we, again, created myths that, uh, you know, these congregate arrangements were, uh, safe, you know? So you think about prisons, they’re, they’re pretty secure. They’re not safe, um, or nursing homes that they’re pretty secure, but we know there’s huge amounts of neglect and abuse. And then we look at institutions, at least in our country. And one in three people with disabilities were neglected or abused. Well, what makes us think group homes or day centers, anything like that is any different. I mean, what I had found is the more eyes, the more included, the more integrated the safer people are. And that does not mean no risk, because life has risks. You know, it, it just does. You can’t, you can’t eliminate it now, can you have a stove that cuts off automatically with the sensor? Yes. Can you have a smoke alarm? [inaudible] can you have a, you know, can you have things that make us safer where they have a disability or not? Um, yes, you can, but you cannot not eliminate all risk. Like heartbreak, like loneliness, like failure. You can’t, it’s not, it, it makes no sense you can’t do it anyway.

Carrie  (00:50:58):

It’s the struggle that makes it worthwhile. Like, and it’s the struggle that brings you to that next level. So if you never have any risk and nothing ever goes wrong, like there’s a, there’s a line in a kid’s movie, um, Finding Nemo and, and his dad was trying to make sure that nothing ever happened to him and the worry that the other fish said, well, that doesn’t sound too exciting or a Little Nemo, like nothing ever happens to him. And when you actually think about all the good things that happened in my life, and I think, yeah, that didn’t actually go the way it was supposed to go. And because of that, I got you. And when I look at situations where things aren’t going well for my daughter, well, that’s the only time she has a chance to shine and show what she can figure out.

Lynne  (00:51:47):

Yeah. So, and learn from it and learn from it.

Carrie  (00:51:50):

Yeah. There’s going to be underweight and

Lynne  (00:51:57):

Some of us, people with disabilities, as well as people without need to learn it.

Carrie  (00:52:13):

Yes, we do. That and yeah, it is amazing how many times you have to really learn the same thing. And sometimes we have such high expectations for our kids like that every day is going to be a good day for them. Exactly. And we have expectations of compliance and attitude. Well haven’t so how can I expect that of them when they don’t have any control over what’s going on in most cases. And I go back to that, that thing about knowing someone in the context, the way you know, them in the context of a family, they’re the daughter in this role.

Lynne  (00:52:55):

Well, and I also think that, you know, the society indoctrinates us from a very young age to value beauty and intellect, um, you know, heavily. And when you lift up and look, what’s underneath that, oftentimes it’s that, uh, a result of that is not believing people with intellectual disabilities or developmental disabilities are, are equals. And when we fall into that, you know, and we close look at with aren’t, we kind aren’t, we nice, aren’t we special? You know? Um, it’s very dangerous. I think for people with disabilities, very dangerous. Um, and which is why we, again, I think one of the primary reasons of why so many people with disabilities are not leading lives of their choosing.

Carrie (00:53:50):

Yeah. That’s an excellent point. Yeah. There were so many trues that, uh, you know, when we look at the lives we lead and we it’s that lack of choice, that strikes me to the core that, you know, we have, we have such expectations. Um, and we are so like with COVID, you know, our, our choices have been paired away. So we have choice within our own homes. Um, and right now, uh, you know, if we have to stay here, then, then there’s a hierarchy in our, and again, you know, it, uh, choices taken away and choice is the, that’s what we, uh, that’s what we’re designed to do is, is to choose, to evaluate, to see what makes sense for us and pursue the things that are meaningful for us and without, yeah. In the conduct.

Lynne  (00:54:58):

I mean, when you’re a child, there’s no doubt who’s empowered, you know, it’s, you know, foremost, your parents and then your teachers, but once you’re, you’re not a child, you’re, let’s say 21 years old, you know, then that power structure, um,

Lynne (00:55:18):

Development,

Lynne  (00:55:21):

Not necessarily release

Carrie (00:55:25):

Development, excellent point. And his parents, like, I’m just thinking about all the benefits of, of, or opportunities, I guess, in the context of your own home. Like just from A to Z, like not only when you eat or what you eat, but you know, what your home looks like and making those choices of, of wall color or decoration, or just how clean you keep it, or how you clean. You keep yourself. It’s just,

Lynne (00:55:58):

I love just being able to be alone and lounge on the couch and channel surf, you know, they’re, it’s such basic things, you know, whether you like your blinds closed or what, what temperature you like, or how loud you want the music or what music, you know, or whether you just keep the TV on. Though you’re not watching it. Yeah. Like it on, I mean, they’re, it’s such little small things that when put all together, you do, it does make you feel, uh, better, uh, um, much you, uh, I think have more peace, um, when you have your own life,

Carrie  (00:56:51):

Your own life. Yeah. There’s not tension like every single thing doesn’t cause tension is that another person going to point to is my father going to,

Lynne (00:57:01):

And it doesn’t mean it doesn’t mean that, you know, for instance, like you don’t get lonely and that, you know, you’re gonna, you’re gonna cry. You’re gonna eat, um, a pint of Haagen-Dazs. It doesn’t need that it’s but you still have the space to be you.

Carrie  (00:57:17):

Yes. And I think that is absolutely huge as we all appreciate. And now if we can just transfer to, to what, um, our kids need, uh, to be them, because we all want that for them. So it’s just been a pleasure talking to you, Lynne . Um, I appreciate that you’ve taken this time and, and I, I, um, I really enjoyed just the back and forth so much.

Lynne  (00:57:46):

Yeah. I love just having a conversation and also meeting, you know,

Carrie  (00:57:52):

Thank you very much. It’s been, I’ve been really looking forward to this for a long time when Genia suggested that, well, I’ll just, you know, give Lynn a call and see if she’d be willing and I’m thinking

Lynne  (00:58:04):

Yep. And I was, and will be in the future too.

Carrie  (00:58:10):

Great. So, um, you know how to go with your mom and did she have any reaction or yeah,

Lynne  (00:58:18):

She did it, um, mainly, uh, you know, she’s 87, so, uh, real strong fatigue and that didn’t come on for a day and left the two days. Um, well, almost two days. Uh, and then, um, also she had a, she was a little foggy, um, you know, just a little foggy that seems to have subsided, but yeah, but she’s, I mean, look, talk, you were just talking about mo motivation. You know, my mother has, um, you know, some arthritis and so forth and I mean, she had to walk up almost a football field to get this second vaccination. Right. Cause we’re in a big convention center. Well, man, she was, she was moving that direction. I mean, she wanted that second shot. She wanted to be vaccinated you know? Um, so motivation. Yeah. It’s a funny thing

Lynne  (00:59:22):

Telling her move around, mom, you know, just move around, walk around the block. No, no,

Lynne  (00:59:27):

Getting that vaccination [inaudible]

Carrie  (00:59:32):

Yeah, we, uh, and that’s another thing with the whole parent dynamic. Hey, like my mother said that she, like, my parents are both 89. They’re still in their own home. And um, she said, you know, I don’t, we were talking about reaching out

Carrie (00:59:45):

For support. Yeah. Whatever

Carrie  (00:59:48):

It might look like. And she said, you know, I don’t want to be managed by anybody when I can still manage myself. And when there’s going to probably be a time where I can’t manage myself, but until that time comes, I don’t want anybody messing around. And it just made me think of Samantha like that. My daughter, she like, why should she have somebody managing her? If, if she can learn how to do it herself.

Lynne  (01:00:14):

Exactly. Exactly

Carrie  (01:00:17):

There’s so many parallels between the different ends of life, you know, it’s like, and thank goodness, because it reminds us except parents,

Lynne (01:00:29):

But who have kids without disabilities are again from birth on, have the expectation. There’s going to be a time. I won’t be managing you where parents with kids with disabilities. I don’t think start there. No, not start there. So turning that up. Yeah.

Carrie  (01:00:52):

That’s huge. Do you find that people and I’m conscious of the time here? I don’t want to overstay my welcome here, but, um, the, do you find that parents generally get you guys like that?

Lynne  (01:01:07):

Well, it’s funny. I mean, the parents, when we were closing the group home, um, so that was 25 years ago. Um, the parents we were working with then, um, we really just kept our mantra up. We’re changing the walls, not the service, we’re changing the walls, not the service. And it was the first time I think we really had equal partnership with family members, um, with that kind of transition, you know, whether it was okay, we will keep checking overnight, even though we don’t think he needs it, we will, because you’re not ready. Right. Mom, you’re not ready. Um, okay. We will keep driving him, even though he can ride the bus, but can you help with some taxi or Uber costs, you know, cause you’re not ready. You know, but being really clear about that kind of partnership when we were closing each group home, at least in that first year, um, I think built up a lot of trust.

Lynne  (01:02:14):

Now what we’re finding is the younger parents, you know, parents whose kids were never in an institution, there was no thought that, you know, they would be anywhere other than the family home and had expectations that they would have a life are much more attracted to us much more. And if you are, let’s just say you’re a controlling parent and you know, right down to the sock drawer and how that needs to look. Well, this kind of service fits with you a lot better because all you need is your kid to give you the key. And you’re not trying to, you know, not disturb dinner or what the activity is. You just go into your daughter’s house. Right? You have the key, you know, I mean you can influence. I mean, we have one parent, I mean literally helped her daughter decorate her apartment.

Lynne  (01:03:14):

And it’s a mini version of the family home right down to the style that the artificial flowers, the reef, I mean, all of that.  You know, I’m not saying that she’s imposed herself. Uh, her daughter quite, quite likes it. In fact thinks that her place is a little better as she’s got newer stuff, you know? Um, so I mean, there’s just so much more, it’s natural involvement of families when people have their own space. Now, today my mother, my age, wouldn’t come in and say, I’m going to rearrange your paintings, but she’s very free to say she doesn’t like this particular one. Does that influence me? Well, that’s my choice then that’s my choice. Yep. Yep. All right. Thank you so much, Lynne pleasure to meet you. And I’ve really enjoyed her discussion me to thank you. Take care. Bye.

Genia  (01:04:15):

Thanks so much for joining Carrie and Lynne for this great conversation. I hope that you found it valuable and I hope that you will join us next week on The Good Things In Life podcast. Thank you so much. Stay well, be kind to each other and take care.