Peter Reynolds 00:00
Welcome to Community Living Out Loud, brought to you by Community Living Mississauga. I'm your host, Peter Reynolds. On this podcast, we celebrate the lives of people who have an intellectual disability, and the incredible work being done to advocate for them and their families. Through conversations with experts, advocates, and people with lived experiences, we hope to inspire and educate listeners on the importance of building strong supportive communities. Let's get loud.
Peter Reynolds 00:38
The Parent Connection Help Group is a parent run resource, allowing parents and family members of people who have an intellectual disability to share their experiences and resources with one another. While the group has support from Community Living Mississauga and Community Living Ontario, it's the parents who plan the sessions and make the presentations. This group is just one example of how family members are now having to look beyond traditional support models due to a system that has been pushed beyond its capacity. Today to talk about the challenges people who have an intellectual disability have in accessing resources, and what actions are being taken to overcome those obstacles, are Don Osmond, a longtime member of the parent connection help group and Chris Beesley, Chief Executive Officer of Community Living Ontario. Gentlemen, welcome to Community Living Out Loud.
Chris Beesley 01:32
Great to be here.
Don Osmond 01:33
Good afternoon,
Peter Reynolds 01:34
Don, perhaps I could start with you. And for those members of our audience who don't know, what is the Parent Connection Help Group?
Don Osmond 01:41
Parent Connection Help Group is a family oriented organization that was started by Carrie Ahrens when she was with the school parent council was hoping to help families to work for the transition from school to work. And then into the future. This turned into a group of 35 families which it started out with, and has now grown to over 300 in the contact list. These people are family members and actual people who can speak for themselves in the handicapped areas, but that basically is to associate people to help one another. In other words, what one person might know as someone else might be able to be find that useful information. And that's part of carries theme is someone in the room will know something that will help you and for you get to organize some work together and understand what's going on.
Peter Reynolds 02:48
So the idea being that you don't have to reinvent the wheel.
Don Osmond 02:52
Exactly. There's a lot of families who are been around like myself, and my family, we've been through a lot of it, we still are learning, we're still moving ahead. And with the changes that have happened in the past. It's making it tougher for families to realize on their own or work with community supports all the time to get what they need. And they're having to work amongst themselves and develop services and develop programs that they can work with and join together and produce to bring their loved ones forward.
Peter Reynolds 03:30
What are some of the topics that that you would discuss at a meeting?
Don Osmond 03:34
That's quite varied, because it'll all depend on what level that your family is situated in anywhere from leaving school, work to transition all the way to families like yourselves, which are dealing with needing homes and looking to the future, the planning, building circles of friends and also learning about the newest ways that things are happening with microboards and then getting on to housing, is it going to be roommates? Is it going to be in your own home? Is it going to be in apartments or any form that you can come up with to provide that situation that living situation, that life situation, but it's an individualized thing.
Peter Reynolds 04:19
But I guess when it comes to lobbying government or just trying to find those services, there's power in numbers,
Don Osmond 04:27
Very much soul and Chris and community living Ontario has proved that for us as well, with all the support that they've been pushing forward in helping us to come up with paperwork and the different programs that they initiate to get in touch with your community members and your associates. That uh, I'm losing track here of my thoughts
Peter Reynolds 04:55
That's okay, Don. It's a perfect segue to talk to the person beside you. And Chris, can you tell us a little bit about how organizations like Community Living Mississauga, and Community Living Ontario? What they're doing to help organizations like Don's?
Chris Beesley 05:12
Sure, yeah, Thanks, Peter. Community Living Ontario exists to be that provincial voice. So when he you know, when Don was talking about advocacy and having that voice brought forward to government, we're also the were conveners we're facilitators we're educators, we're trying to be that space, to provide conversation and learn about and talk about different things that affect families, people who have an intellectual disability, and the organizations which support them. And so the more we work with those three constituencies, the more we can be of value to our membership, and vice versa in terms of what they contribute.
Peter Reynolds 05:54
So the direction that is determined by the group, but the when it comes to professional services, or sort of understanding how government works, that's where you would come in?
Chris Beesley 06:05
Yeah, absolutely. Each each of our local associations is an independent organization with its own governance, its own funding structure, and its own way of delivering supports and services. So what we do is try and provide sort of an overarching ethos, if you like, our philosophy on why it is we provide the supports and services? Why is it important to support people who have an intellectual disability and their families? And so we, we propose that it's important because people deserve to have opportunities, they deserve to have equal opportunities, they deserve the support that's required to have those opportunities towards what we would think of as a typical life in the community, being present, and even more importantly, bringing their own gifts and contributions to that community. And so those organizations who subscribe to or support that notion, choose to be members of Community Living Ontario.
Peter Reynolds 07:04
I can see you nodding there, Don, the when it comes to the support that that organizations like Community Living Ontario are providing
Don Osmond 07:12
The families are need the direction as well, and the organizations to know where to direct their efforts. They can build on their own and they can work on building those efforts, but having some extra direction, and especially when it comes to the political needs, and who do we talk to, and where do we go, it's not always easy. Community Living Ontario has been providing a lot of that direction for us in the past, now, and hopefully more in the future. But with that continuity, that's also providing a provincial type continuity, that more and more of our organizations are collaborating and understanding and working with one another.
Peter Reynolds 07:58
I'm just wondering, Don, if you can, if you have a personal story about how the group has helped you and your family?
Don Osmond 08:07
Yes. One of the things that happens is we bring in speakers from different outlets in different ways that are going on in life, wow, along without his bringing in facilitators, and having them discuss how they work to help families to develop the programs that they're in. We were working with one facilitator who's got a great program. He's quite good at what he does, because he's very well because he is in the situation because of one of his family members. And now we've moved on with another facilitator who is actually helping us and building helping to build the circle of friends and then working towards a micro board. So that facilitator is actually doing a lot of the background work for us, which is very good in our respect, because we at 75. we're getting to that point where we're getting concerned what's going to happen to our sons in the future as we have two sons that are needs. This allows us then to take the pressure off us and take the stress and the strain away from my wife and I because we're getting more direct support as well.
Peter Reynolds 09:25
Obviously, that direct support is critical. And Chris, I'm just wondering, as an organization, what would you consider as the biggest challenge when it comes to supporting families like Don's?
Chris Beesley 09:39
Well, I think he made made mention of his old situation and you know, as as parents as we get older, we wonder what is going to happen to our kids and have it at all a fear really, of what that's going to look like and I think the you know, over the years, community living as a movement, I mean, we started 75 years ago be because there was there was nothing, right the there was no system, there was no right to education, there was no right to getting, you know, support to get a job or to live in one's own home, there was institutions. And so that was the default. And over the years when community living and as a result of families coming together, started lobbying for a collective voice and support from governments. And so over the years, we got that support, like education and like Community Living local organizations, and, and really saw some wonderful supports and services being being offered. To the point where we were, we were kind of, in some ways a victim of our own success, because people came to rely on those supports and services, sometimes to the exclusion of themselves, their own families, their own neighbors, their own neighborhoods. And so when Don talks about the like circles of support, we've we've now come to realize that the system doesn't necessarily provide everything to everyone. In fact, we know it doesn't. And we've also come to realize that it probably shouldn't, in the sense that, and don't get me wrong, but there's tremendous capacity that government is still unable to fulfill, we need more resources, we need more people to access those resources, because they're critically important to to people's lives. But we've also co me to recognize that the family, friends, allies, people in the community, those what we call natural supports, are also critically important. So now we're getting to back to the sort of maybe a balance really between at the beginning a lack of supports, or any sort of government supports or system to you know, can really focused on what became, in some cases, sort of a wraparound, keep my kids healthy, you know, safe and secure to know recognizing, no, we need we need people in the community, because we're all better off if everyone is part of the community. So what does that look like? What role do parents have? And what role do extended families and families connecting with each other, and our neighbors and our friends? And there's a role for everyone? And what does that look like? And how can we? How can we be more creative and cohesive to bring all those things together? So that's really the, you know, where we're at now?
Peter Reynolds 12:24
Would you agree with that, Don, that in some ways, it needs to be a different approach that in, you know, basically to deal with a very strained system?
Don Osmond 12:37
Very much so. We have a lot of families who are people who have immigrated here and don't have family support, here with them. So for them, it's critical to actually build on community support, and maybe other families within the organization. But you don't want to become dependent on other families who were also looking for support for themselves. So it's very important, as Chris said, to bring in the community to bring in school, workplace, people who have been involved with the kids, whether it be church or in other ways, organizations that can, can help the these, this is where you find other people who might be interested in helping you and your child and being part of your child's family support group for the long term, and not just short term, hopefully long term. But they've also got to remember and the parents often remember, some of it is only short term, but it's welcome help, and welcome support, even if it's in the short term.
Peter Reynolds 13:42
Absolutely, I'm just thinking about those parents that might be watching. And I mean, it can be obviously overwhelming. And and you know, there are so much to deal with in life to begin with, and just sort of trying to deal with the day to day situation that you find yourself in and just day to day issues that come up, the idea of being part of a group or or helping others, you feel like maybe I just don't have the hours in the day, I'm barely getting sleep as it is to go out there and help but you're saying that people really should get involved in the community and helping others and there's that there's value in that.
Don Osmond 14:24
There's great value in that. And the thing is, is that you need to go into the areas where you can find that support, that's the whole point is that whether it be church, work, school, there's there's so many people out there that are actually willing to help. And they don't always have the time themselves because they have families and they have their own situations to deal with. So you're always looking at how can you actually make that work? And sometimes it's not always on a daily or weekly basis. It could be a monthly basis. It might be every couple months, but it's getting someone else and getting support involved.
Chris Beesley 15:02
Yeah, right. And that's it's a really good point that the Don raises in terms of the, you know, the where, when and how and recognizing that everybody is at a different points on that journey or has different circumstances in their lives and, and I think it's really important for for family groups that like, like Don's are there and can make the invitation. I think it's really important to have families, hold out the hand and invite other families as opposed to professionals or organizations that, sadly, to family outreach, and it might not be taken up right away, a family might not be in that sort of, you know, Don referenced new Canadians, if you just come into Canada, you're trying to know which way is up and up. And if somebody reaches out, you know, and says, Hey, you want to be part of the group? You're, you're probably like, I don't know, right? You just don't know. But if you get back to if you if you make another outreach six months or a year from now, that might be better timing for that family and their situation. And so just recognizing that everyone's at a different place, but that the value of, of collaboration and fellowship can be found in many different places, but families reaching out to families, I think, is one key component of that.
Peter Reynolds 16:24
So done talking about families that are either new Canadians, or are sort of just joining the group, just trying to figure this out, what advice would you have for them, when it comes to sort of navigating the social services and the system in Ontario?
Don Osmond 16:41
Well, the very important part is actually to sit down and have a little chat with them, have it over a coffee or something, just to understand where they are, what they do know what they don't know. And then you can offer what help you might be able to provide. Being in the group, you invite them out, we can invite them out to a meeting. And say, there are families here who are in your same situation with your same situation, problems, and you can talk to them, because you'll be able to get more advice from them than you will from me because they understand that situation better than I do. I can help families and other situations. But this whole point of the being the parent group is that there's enough people there, that there's someone else who understands your situation, and what you're doing and what you're trying to do. And where that might be able to help point you in the direction that you need to go.
Peter Reynolds 17:37
And I just gotta say, with the parent, just to confirm with the parent connection, help group, these, this is for parents at any stage in the journey. At any stage.
Don Osmond 17:46
At any stage, we have, what we have our meetings, Carrie sets out the tables, and she puts markers on the tables. And this table is for school to work transition families. Another table might be for families wanting to look into roommates for their kids. Another table might be families looking at doing their own housing or building on a project. Another table might be family, so just want to help to build circles of friends and microboards. And how to do work on that more, so that you get groupings, and you don't necessarily go to the same table every time you go to a meeting, you might change tables or something your situation, you're looking for something else at that time. So you'll go to another table with that group of people.
Chris Beesley 18:30
Yeah, one of the things that that that your Don was talking about in terms of families, helping families, access supports and services. And one of the things that we've found over the years at Community Living Ontario, is backing that up a little bit to talk about the "why". In other words, and we put we think there's a lot of value in values. And so when you when you first talk to parents, and you know, they feel like, well, I need to get out a waiting list, I need to get plugged into supports and services. And I need, you know, how do you how did you do that? And when should I apply for that? And all of the things that are important in having paid supports and services. But if you back it up a bit and say, Well, why? Why are you chasing those supports and services. And when you get down to the nub of it. It's because we want our kids like I think I said earlier than we want our kids to be safe. Safety for parents is always a big thing. Not so much for our kids, but for us as parents. But when you talk about well, what is it you want for your kids? Well, we want them to of course we want to be safe, but we want them to be happy. We want them to have a healthy long life. We want them to have friends. We want them to feel like they're they're important that they have a purpose that they they have some roles in the community that they feel good about, and that they somehow realize their own potential. And when you compare that description to their other so called typical kids, it's exactly the same. And so because we all want the same things for our kids, regardless of ability or disability, we just then recognize okay, well, what is it about our kids who have, have been identified with disabilities that's a little bit different? Well, they, you know, they, they, they could be a little bit more vulnerable in certain situations, they might need some more support, to get a job or to find those social spaces or to to get a house or in a home that they're proud of. Okay, so now you're starting to get to the why, why do we want to connect with other families? Why do we want to connect to supports and services, if you suddenly have a grounding of values, that allows you to start having the conversation about well, what is the vision for the life of your your loved one? So it's not just chasing the money or getting on the waiting list? Or getting ODSP? Or whatever it is? It's in order to support and do those things that we feel are our give our kids a good life?
Peter Reynolds 21:06
Chris, we've been talking about the parent connection help group. And I'm just wondering if there are other groups out there on Ontario that are that are doing something similar that you're aware of?
Chris Beesley 21:16
Yeah, absolutely. There are over 100 groups in the province, that we've we did a bit of a mapping exercise to do some migration, say, Hey, who are you? Where are you? Because we wanted to have a better and more consistent connection to those families, and find out where they're at what they're talking about, and how we could be supportive in in their journey, and, and help bring them together as well. So we've got over 100 groups, we recently put out a call, we were issuing some small grants to some of those groups we had last fall, we had 56 applications. And basically we just put out the word and said, Hey, if you had a little bit of money, and you want what what would you want to try? What are some of the things you've been thinking about as a group? And what might that look like? And these groups are, you know, half a dozen families who meet at Tim's on Sunday mornings, to to larger groups or meet more regularly. Some are even incorporated, some are affiliated with local associations, others aren't. So it's really spans the gamut. And some are focused around here. If they're all younger families, they might be focused around the school years. Others it's a real mix more, some are on employment, but really the bottom line is they're whether they realize it or not. It's about how do we, what might we think about and do together in in supporting good lives for our kids in the community.
Peter Reynolds 22:45
It's very interesting, as I as I hear both of you talking and as we have this conversation, Don, this idea that your group was started so that parents didn't have to reinvent the wheel. And, Chris, it seems like Community Living Ontario is bringing all these organizations together so that the organizations don't have to reinvent the wheel, because someone might have done that already and can help another group.
Chris Beesley 23:11
Absolutely, and that's that's part of the exercise we've been going through both on the what we would call the first voice or self advocacy side of the equation, you know, Where where are there groups of people with lived experience who want to come together and want to advocate on their own behalf? And how can our local associations support that, so we're doing some work on that side. And then as I said, on the other side, connecting with those family groups, finding out where they are, what they're up to how we can support them. And then next next phase is really to create more of a, a collaborative platform, could be a listserv could be a team's channel, you know, those sorts of things that exist, that allow people to share ideas, conversations, access resources, again, to your point, let's not reinvent the wheel. Let's connect each other to each each group. And let's see where they're at what they can learn from each other. And so if we can provide or fulfill that role, we think there's real value there.
Peter Reynolds 24:08
So, Don, what's the first step for a parent watching this, that that feels they need to help and wants to get involved?
Don Osmond 24:18
Boy, that's a big question. Firstly, myself, I would probably be looking to make sure that I've got my paperwork in place. Make sure you've got your diagnosis, make sure you've got what you need to get in touch with your local community living who can give you some direction as to things that are available. The schools are doing more now to help instruct families as well, because you need to make sure that you're right aligned and ready to set up with the DSOs since that now is the major place for everyone to be connected to get services. Basically, we need Need to make sure that you are available to be open to wanting that need. There are still a lot of families who aren't quite ready to accept the need yet. But that comes with time. And that comes with them realizing that the support is out there, and that they can get the help. They're not alone. But seeking it, it's you need to contact certain organizations to get started. And Community Living is a very good one to get started.
Chris Beesley 25:30
Yeah, and if you're if you're looking to get connected to a family group, or you're looking to start a family group, I mean, obviously in Mississauga area, contact Community Living Mississauga, and they'll, they'll connect you to Carrie and Don in the in the group there. If, if it's elsewhere in the province, Chris@CommunityLivingOntario.ca, that's my email, I'll hook you up, I'll point you in the right direction, right. If you want help in starting a group, we can help you there. Or if you're living wherever, wherever in the province, I can point you in the right direction. Happy to do that.
Peter Reynolds 26:03
Don. I just if we don't mind, I want to touch just briefly on this idea of stigma, this idea that people might not be ready to ask for help, you know, families out there might not want to talk about their family situation with other people, what would you say to them?
Don Osmond 26:21
That, again, is another tough, tough question to answer. Because certain families have the stigma that they might have a stigma that comes from the origin, their community, their their nationality, to not recognize that they may have a child with a problem, to keep it under cover, so to speak. And then that's, that's sad, because then that child doesn't get the the support that they need right away, which will help them develop a better life in the future. So trying to encourage people that might be having a stigma problem is to point out that they're holding their child back, and that their child can grow so much more by getting the supports that are available.
Chris Beesley 27:11
And I think wherever we have the opportunity to, to reach out to other communities. I mean, here we are, you know, three old white guys talking about the, you know, families and what's going on. And really, there's I mean, I'm joking, but I'm not right, because we need to be aware of when we talk about inclusion, it's many forms. And so it's not just disability related, but how do we reach out to the ethno-cultural, socio-economic, right, there's a there's so many factors that go into, to how people identify, and cultural is a big one. And if there is a bias or a stigma there, we need to be reflective of the communities in which we operate. And so if somebody, for instance, of you know, in in Don's family group, if they knew of a of a family or a cultural organization that they were a part of, for them to reach out so that they're they're seeing themselves in that outreach, right. And same with staff at one of our local associations, if they are reflective of the community they're serving for that reach out, that goes a long way for you to see somebody recognize somebody that shares a language, share some customs, maybe shares a religion, all those kinds of things allow for that, that bridge to be crossed more easily, especially when there is stigma involved.
Don Osmond 28:31
Very much so.
Peter Reynolds 28:33
Don, any final thoughts?
Don Osmond 28:35
Well, just for people that need to get out, get in touch with an organization if you're not sure, there's no harm in coming out to a meeting or just calling and asking. Carrie can put you in touch with people in touch with other families who are in very similar situations just so they can get an understanding. But the whole key is to get in touch, get involved.
Peter Reynolds 29:01
And how can they get in touch?
Don Osmond 29:03
Through Carrie Ahrens at the Parent Connections Group. We'd have to the person can do that through Community living Mississauga, or I'm sorry, Community Living Ontario. They have the way it means to put out information, Carrie does do emails to all the association groups or to everybody that's involved. We also depend on DSO. DSO, puts up a lot of information of meetings and different organizations that are out there. And if you're on their mailing list, there's lots of contact information available through that.
Peter Reynolds 29:41
And DSO stands for?
Don Osmond 29:43
Developmental Services Ontario.
Peter Reynolds 29:46
Any final thoughts, Chris?
Chris Beesley 29:48
I mean I have a family member myself and I have a son who was who has an intellectual disability and I'm part of a family group. I just cannot undersell the value, or oversell the value I guess I should say, of families connecting with families commiserating, sharing, there really is no substitute for it. There's there's no nothing, nothing paid in the world that will take the place or the value of somebody who's walked a mile in your shoes, who understands the day to day, the good, the bad and the ugly, and, and can really share in that journey. I think that's really, really valuable. So that would be my, my plug for family groups in general, really encourage people to to reach out and connect.
Peter Reynolds 30:36
Well, Don, Chris, thank you so much for sharing your expertise with us today. I think you both really helped shed light on the vital role that grassroots initiatives like Parent Connection Help Group play in filling the gaps left by a strained traditional support systems. It's clear that fostering these connections and leveraging community resources and advocating at the provincial level, we can really work towards creating a more inclusive and supportive environment for people who have an intellectual disabilities and their families. Thanks again for joining us.
Chris Beesley 31:11
Thank you, Peter.
Don Osmond 31:12
It was my pleasure.
Peter Reynolds 31:14
And as always, thank you to our audience, your continued support is very much appreciated. And don't forget whether you're watching this on YouTube or listening on your favorite podcast app, be sure to subscribe and leave a review. We want to hear what you think. So for Don, Chris, and everyone here at Community Living Mississauga, I'm Peter Reynolds. You've been listening to Community Living Out Loud, and until next time, stay loud
