The Agenda with Steve Paikin (Audio) - Community Living is Campaigning For Survival

Episode Date: May 27, 2024

Community Living Ontario received a two per cent funding increase inn the latest provincial budget, when what it needed was at least fiver per cent. What is the long-term plan to keep these vital services going?See omnystudio.com/listener for privacy information.

From epic camping trips to scenic local hikes, spending time outdoors is a great way to create lasting memories to share with friends and family. This summer, TVO is celebrating the natural wonders that inspire unforgettable adventures with great documentaries, articles, and learning resources about beloved parks in Ontario and beyond. Visit tvo.me slash Ontario summer stories for all this and more. And be sure to tell us your stories for a chance to win great prizes. Help TVO create a better world through the power of learning. Visit TVO.org and make a tax-deductible donation today. Community Living Ontario was hoping for a 5% funding increase from the province

for the developmental services sector, which it said was vital for its survival. The provincial government came up short on that plea, and as a result, the organization and its 119 agencies have cut down services or sold property to pay their bills. But with thousands of people on the waiting list for housing and no financial relief in sight, can these organizations afford to keep the lights on? Let's ask. In Hamilton, Ontario, Monique Taylor, NDP MPP for Hamilton Mountain and critic for children, community and social services. Chris Beasley, CEO of Community Living Ontario. Nico Pupela, Council Treasurer of Community Living Ontario. And Susan Zilma, sister of an Adult with an Intellectual Disability

and a Volunteer with Community Living Toronto. Welcome all. Thank you so much for joining us. Thank you Monique for joining us virtually as well. Chris, I'm going to start with you. What is Community Living Ontario and Breakdown? Because there's a structure there as well. Right, yeah. Community Living Ontario was founded 71 years ago by a group of local organizations

who were concerned about supporting people who have intellectual disabilities in their communities. And so previously to that, people used to just go to institutions and lived there throughout their lives. And over time, we realized that probably wasn't the best idea to support people. So in the 1950s, that's where local associations started springing up.

And Community Living Ontario was a response to recognition for a need for a provincial voice, an advocacy voice, a voice that could help coordinate issues and priorities and supports for people who have intellectual disabilities. And we had mentioned there's 119 agencies so that's spanning the entire province. Yeah we're in most towns and cities across the province and part of a larger system in developmental services where there are some 200 organizations who actually provide supports around around the province. All right Nico with a housing and affordability crisis right now in this province, why is it that these services are even more vital in the community? Well, having gone through a housing crisis

myself, I was actually out of my apartment for over a year and a half, so being on the actual receiving end of that was very different. And just the lack of support I received from the region regarding it was very poor. I don't wish it on anybody, obviously, but I mean, obviously, it's happening everywhere. And having the services in place makes it easier for people to get the help they need. And when staffing are getting cut back, it makes it very difficult for people to do their daily things that they need to do. Like an example, if someone needs to do shopping, they have their staff supports in place. If you're in a supported independent living program and say that staff has to cancel because of something coming up, that puts that

person out of being able to do their supports. And then they're stuck doing it on their own. Is that fair to them? No. But it's also not fair to the staff that they're having to cut services back. So you've seen it from both ends. All right. I'm going to grab Monique. We're going to crunch the numbers shortly. But tell me what's at stake for people with intellectual disabilities if the organization doesn't get immediate financial relief? community living are vital to our communities. We see so many families now who are desperate to be able to get into those homes. I believe we have 14,000 people on wait lists and adding 1,200 each and every year. So families are absolutely desperate to make sure that their loved ones have safe, affordable, supportive housing so that they can now live their lives peacefully also, right? So the fear factor of what people are seeing and what parents are currently telling me

of how scared they are is devastating. So I'm shocked, quite frankly, that the government didn't provide the 5% that was required and necessary. Susan, same question to you. What's at stake? So my story is actually a personal one. My brother Robert has an intellectual disability and he's lived with my mom all his life. Over the years, we've done the best as a family to provide the supports that he needs to teach him what we could and to include him in community activities and programs. But with the advice of some professionals in the sector years ago we

made an application for supported living like a housing placement for him and we got a letter back indicating that we were on a waiting list fast forward to last early last year and my brother still lived with my mother and she is now in her 90s and he is in his 50s and we hit a crisis point. It had been 36 years since that waiting list letter arrived and we had to figure out how to do something to get them out of that crisis. So the long-term care sector is pretty difficult to navigate and we had that with my mom but we had a path forward that we identified there and I've been involved with the sector as a volunteer for many years,

and I thought I knew how to navigate a little bit. But I found it almost a full-time job to find out where my brother was on the waiting list, figure out how we could get him up the waiting list and actually get him a housing placement. At the end of the day, we did find a place for him, and I'm very grateful. He's now in a group home arrangement and is supported by lovely people.

So I am very grateful. But he doesn't any longer have the opportunity to live independently. He's now being, I'll call it taken care of at his stage in life. And my mother hasn't had the opportunity to ever see his new room and his new setup because his room is in the basement and her mobility doesn't allow her to get down there. So some missed opportunities, honestly, and 36 years of waiting. Frustrating, and I know you had mentioned bittersweet as well.

Bittersweet. All right. As we know, it's Community Living Month, and just two weeks ago, Monique, you were at Queen's Park asking the Minister of Children, Community and Social Service, Michael Parsa, about the lack of base funding the organization is facing. Let's have a look at that clip. We are investing more than $3.4 billion on developmental services this year.

That, Mr. Speaker, is over a billion dollars more than the previous government was doing. Now, why do I mention that, Mr. Speaker? It's because the NDP held the balance of power for three years, Mr. Speaker. You've been here long enough to know what you can do when you hold the balance of power. They could have forced the Liberals to invest more in amazing partners who are doing great work across our province. They didn't. They failed the people of this province.

It took this Premier, it took this caucus to stand up for people with developmental disabilities across the province and say we will have your back just as we have since we formed government. I should mention we reached out to the minister to join us on this panel, but he was unavailable. But his office did provide a statement that reads in part, the 2024-25 budget includes an investment of $310 million over three years to address increasing operational costs for targeted community organizations such as those involved with people with disabilities. In addition, effective April 21st, 2022, our government made the temporary wage enhancement

permanent through the creation of the Personal Support Workers and Direct Support Workers Permanent Compensation Enhancement Program. This increase applies to eligible workers delivering publicly funded direct support services in the social services sector. Now, Monique, obviously in that clip, you got to respond there to Michael Parsa. I'm going to give you an opportunity to respond to that statement as well. For sure. Look, I believe in the last 30 years, community living has had a 3.9% increase in 30 years. So, I mean, this isn't just new to this government. This has been decades of governments going back forward, going backwards.

And it's not okay. These are our most vulnerable residents. We have to ensure it is our duty, our responsibility to ensure there is housing for these folks and that the 14,000 people who are waiting, their families will have an opportunity to make sure, just like Susan's brother, right, that he has that safe home and that mom knows and been to visit and can see that he's safe and that life's okay. The way that the system's set up, built on crisis, is just not okay. All right, Chris. I hope you can paint the picture for us a little bit about the financial crisis that is going on within that sector. Talked about the 3.9 over 30 years.

Not even a percent here, right? Well under that. Paint us a picture. So, yeah, Monique's right. Over those 30 years, a cumulative 3.9% investment in the sector. In the same times period, you've got about a 60% increase in the cost of living. So an additional 2% obviously doesn't cover the gap. 2% is better than 0%. Don't get me wrong. But I think the minister would also agree there's a lot more to be done. And we you know certainly look

forward to engaging with he and his government on on that basis it's you know 3.4 billion sounds like a big number but relative to what and so when you've got 14 000 people who are waiting for for those residential supports obviously 3.4 billion isn't enough and And so it becomes a number that in the scope of things, the government spends over $200 billion a year. That's a much bigger number. So what is reasonable and appropriate to support people? And when you see people in crisis, like Susan was referring to,

sometimes parents have to die before they get that support, before a loved one is supported in their living arrangement. And that's just not right. I mean, is it reasonable to think that as a parent, you have some assurance that your son or daughter will be looked after? And sometimes parents have come up to me and said, I hope my child dies before me. Before me. Can you imagine as a parent that they would want that? And it's not because they don't love their child. They love them so desperately that at least they would know

what happened to them and what became of them. And so that's where we're at when you talk about 14,000 people. That's 14,000 families. 14,000 times however many people, right? There's tens of thousands of people who are affected. And we just think that more can be done and needs to be done right now. The organizations have been underfunded for years. We get that. How did that create a gap between staff in the developmental services sector and those in health or education, for example? I had mentioned in the quote there that, you know, there's mention of the PSW workers program and stuff, but it's a little bit more complicated than that. It's not as simple.

It's a lot more complicated than that. But yeah, it's a great question. And I think, you know, it goes back to where we as society and as a reflection of society, where government places its priorities. And we tend to invest in things that we find value in. Traditionally and historically, we haven't found value in people who have an intellectual disability. Quite frankly, we think that they're not as productive, they don't contribute as much, they're a net liability. And so you only invest in those things where you have priority, where you find value.

And so by extension, support workers, how are you supposed to value them to the extent that we value educational workers and hospital workers? Because that affects all of us. And so I think as a society, I think, you know, people generally think, well, those people are looked after. So government must be looking after those people. But I think if we could, you would think, but it's not the case. And I think, you know, NICO is living proof that people are very capable, have a lot to contribute, and are doing things every day that contribute to society. And yes, they might need some support to do that. But so let's invest in people's lives and in community and in inclusion.

And I think by, you know, the end of the day, we're all better off because of it. All right. So, NICO, tell me about the on the front lines, what's the advocacy work that you're doing? Obviously, Queen Spark is not just, not the only place that you guys are doing your work. No. So, we've also developed presentations. We're continuing to develop presentations on various topics, aging in place, making sure that people can actually live where they want to, with whom they want to live with, and still be part of their community. where they want to, with whom they want to live with, and still be part of their community.

We're working on a few other ones that are coming up. My actual local group that I'm part of, we're doing a webinar this afternoon on accessibility and housing. So again, touching on those two main things, and it's a huge barrier to a lot of people. And I love the work that we do, honestly. I mean, I hope to continue doing that,

even if I'm not part of it, but it's still a huge piece of the puzzle. You were at Queen's Park not that long ago as well. Tell us more about the hashtag five to survive campaign that's been rolled out. So it's again, like trying to get that extra push to help the local agencies be able to support people. And when they're seeing the drastic cut in the number that we obviously see, it's hurting

everybody. I mean, like my friend who's part of her group in Guelph, hers is facing a lot of restrictions. Ours up in the north is facing restrictions and it's not... What type of restrictions? So like staff cutbacks, not getting enough support for people that need it, whether it's like their daily living, doing different... There's a lot of factors. It's like, I couldn't just name one. It affects it as a whole. And especially with what I went through with my housing crisis, that was more to do with actually the tornado that went through my town. But again, it's those resources. How are people supposed to access them?

Are they getting the appropriate resources and funding to help them when they're faced with those crises? So it's very challenging. Monique, I'm going to come to you. Tell us a little bit more in terms of the reception to the campaign itself. Is there a movement? Well, I had the number of actual petitions signed to date. It's over 10, like it's the tens of thousands of people who have signed these petitions,

knowing that we have to be able to keep these doors open with 14 000 people on wait lists and with houses actually closing uh it's going to get that much worse and and that's why shows like this are so important uh to be able to raise the attention to be able to have folks actually hear what's going on. Unless it affects you directly, you have no idea what's happening in community living homes and within the sector as a whole. So we need this. I put myself in me, but folks need this money. We have to be able to keep these doors open.

We have to make sure that they're suitable vehicles, that the staff is able to retain staff. They're the lowest paid in the sector. And, you know, the minister talks about making increases good because they were literally making not much more than minimum wage and taking care of our most vulnerable sector of folks, right? A lot of responsibility and a lot of time put in, a lot of heart and a lot of compassion needs to go into those jobs. And to not respect them and pay them properly has been a problem, right? So they're still not up to the wages that we would like to see them at. But, you know, like, we have to do better. We have to do better making sure that it's that social

care infrastructure that is stable and strong in our communities to make sure that we keep people working in the sector. Susan, not only as a first-hand experience, you know, waiting 36 years for your brother to get home, but as a long-time volunteer as well, there are many more people on that waiting list. How's that putting pressure on families? What does that look like? So before we hit the crisis point last year, we were actually stepping in as a family to support my mom and my brother pretty much every day. And we also found a way to hire some support workers,

some PSWs, things like that. So we cobbled together a solution, but it got harder and harder to keep that working as their needs increased. And all the same challenges, right? Turnover of PSWs, turnover of support people. So it is very difficult and puts pressure on a family. But what I would say is actually the hardest thing

alludes to something that Monique said. You don't have a clear path forward as a family. There's no transparency about where you are on the wait list or when you might be offered a spot. God forbid that Chris is right and you have to wait to die before your loved one gets a spot. But so having a clear idea of a path forward for your loved one with an intellectual disability would be wonderful.

And then I would also say that the difficulty that I found as someone with some experience with the sector navigating, it's not exactly client-friendly. So the client experience or the family experience could be much better and make the whole process, which is already difficult, a whole lot easier. I had read, you know, the importance of getting access quickly. That would have, it's hard to look back now, but, you know, in your particular situation with your brother, do you think that would have helped him in his life? Just being able to, you know, not wait 36 years, but to have that earlier.

I mean, sure. I think he missed out on all kinds of opportunities that he would have been able to take advantage of with greater independence. And so someone asked me, you know, once, do you think your brother lived his best life? And I think he has a great life, but I think he missed out on having an even better best life, which is all we could hope for, for any of us. Chris, are you optimistic for the economic statement coming this fall? Is that where your eyes are glued to right now? I mean, I have to be optimistic. That goes with, I mean, as a father and in my role, yeah, you have to be optimistic. I think, again, the work continues, the advocacy continues. So, you know, we're hopeful that we can continue to work with the government

and get the kind of investment that we desperately need. What's the work that needs to happen now up until the economic fall statement? Oh, gosh, it's, I mean, it's more of what we've been doing. We talked about, you know, five to survive. And it's keep that the pedal to the metal, as they say. I mean, we've got great engagement in our communities, within our membership, with our families and with self-advocates, people with lived experience. It's trying to get that message out. It's kind of like, remember Dr. Seuss, Horton hears a who?

Right. We're here, we're here, we're here. Right? Horton hears a who, we're here, we're here, we're here, right? And we need to get that message loud and clear and keep it, keep on it so that the government understands that this is a clear and present danger to people, as well as an opportunity to do the right thing. Are there other venues for perennial funding that can help? Depending on the individual circumstances, for example, if there is some medical complexity, then we look to the health care system.

You know, if they're while, you know, people younger, they're in school, we look to the education system to provide those supports and make sure people are well supported. So it's just like everybody else, we look to government to provide those supports where we need them, when we need them. And I guess for, you know, within community living, obviously our priority is on people who have intellectual and developmental disabilities. So what is the appropriate support for the person at the time? And we do a great job of that.

And we can do an even better job if we have the proper tools and resources. Monique, I'm going to bring back that question. What are your hopes for the economic statement coming out this fall? That we see that 5% solid and not a one-time funding, but solid sustainable funding that community living homes

know they can count on year after year. They're cutting back on their capital costs. So houses will start to crumble, which will, you know, take away from those beds and those homes that we already have in the system. So those funds have to be there. I will plea with the government to please make sure that they see vulnerable people as an asset to our communities and that they know that taking care of our most vulnerable residents is the right direction for thousands and thousands and thousands of families who are counting on these support systems to help them get through

and to make sure that people can live their best lives. And Monique raises a great point there, though, around sustainability, right? So thinking that every year or every six months trying to get some sort of increase, if there was a path forward to sustainability and a multi-year commitment that said, you know what, we're going to index increases to the cost of living,

or something that gives us a path forward so that our organizations can actually plan for doing better rather than planning a retreat and a downsizing in services. I did want to follow up on the funding. You know, a lot of it is, we're talking public dollars here. We're talking when you mentioned healthcare, you mentioned education. Is there an opportunity in the private sector to get involved as well? Listen, there's always opportunities for for people and organizations to to come to the table with um resources and supports that are appropriate to the person uh you know whether it's whether it's not for profits or or or public or private rather um you know obviously we're biased to the

non-profit sector and that's where our history is and we think that that's the most effective use of resources and certainly more effective than having people in in in long-term care homes or in hospital settings that end up being far more expensive and inappropriate for people so it's it's effective use of resources we think we do a really good job of it because we've got over 70 years of experience in it we already made all the mistakes so we're we're we know what we're talking about and we know what inclusion looks like and we know how to bring people together and belong in the community. All right. My last question is to all three here in studio, only because Monique had the opportunity to ask the minister this question. But Nico, we'll start with you. What do you want

to tell the government to understand when making the budget to help community living agencies across Ontario? Well, I mean, to view us as an actual person, not as a number or a statistic. I mean, Chris said earlier that like people that are like us are like trying to get into the workforce. It's very difficult when we're also facing clawbacks of our money that we're making, and we're also being discriminated against when we're trying to apply to jobs. Like, how is that fair? I mean, I see it every day. I hear it every day. It's just like, stop looking at us as a number. Treat us like a regular human being.

Yeah, we're different, but that's who we are. We're unique in our own way. Don't view us as a number. All right, Susan. So I love Nico's answer, and I'm going to piggyback on it a little bit. I actually think that there's a lot to be said for that. It really is about thinking about the value that these individuals can bring to us as a society. But we need to then support them properly and make sure that we permit them and encourage them to be fully included in all kinds of aspects. And that's what I would ask, building on your wonderful answer, Nico.

Chris, you got the last word? Wow, I mean, great words. So I don't know if I can do any better than that. But, you know, listen, Minister Pars is a good guy, right? He wants to do right by people. He wants to be able to invest in the sector. I think this is broader than strictly the Ministry of Children, Community and Social Services.

This is an all-of-government issue and putting priority to our most vulnerable and investing in the sector that has been starving for 30 years. All right. I can't imagine 30 years.

It's a long time. Yeah. All right. Chris, Susan, Nico, Monique, thank you so much for joining us on the program and sharing your expertise and your personal stories.

And hopefully we will continue this conversation. Definitely. Thanks very much. Thank you for having us. So good. Thank you so much. The Agenda with Steve Paikin is made possible through generous philanthropic contributions from viewers like you. Thank you for supporting TVO's journalism.