Mainstreet Interview with PEICA president, Twilah Stone

Mainstreet PEI with Matt Rainnie

These have been challenging times for the non-profit organization PEI Citizen Advocacy, working to support Islanders with intellectual disabilities. We speak with Twilah Stone, president of the organization about their work and an online fundraiser happening this Friday night.

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Interview with Matt Rainie feat. Twilah Stone

Matt Rainnie: Islanders with intellectual disabilities face a number of challenges, including getting equal access to justice. PEI Citizen Advocacy Inc. has received a $5000 grant from the Law Foundation of PEI that will research and document some of those struggles.

“It’s all with an eye to coming up with solutions.” Twilah Stone is the president of the board of PEI Citizen Advocacy and Angela spoke with her earlier. She began by asking Twilah to explain what PEI Citizen Advocacy does.

Twilah Stone: We (PEICA) are a not-for-profit group, and we’ve been around on PEI for 32 years now.

Islanders who have an intellectual disability are among the most marginalized groups of people in our community, and they often have no friends in their life or they have no one in their life that is not paid to be there. This creates a lot of issues for people with intellectual disabilities. They’re very lonely, isolated from the community and they often experience some breaches in their human and legal rights.

Our focus here at Citizen Advocacy is to identify adults who need support, friendship, and protection. We go out and recruit volunteers from the community and we basically act as a matchmaker. We bring these people together to help them navigate the system, make sure they get access to quality services and become a friend and also a protector of their rights.

We currently only have a part-time staff person and we felt like we weren’t really able to fully complete the work that we strongly believe in. So, last fall we applied to the Law Foundation of PEI for some grant money.

Recently we got word back that our grant was accepted, and so the law foundation has been very generous with us and they want to work with us so we’re pretty grateful for this opportunity.

What the funding is being granted for is to create what we’re calling a research framework. This framework will involve looking at the key issues around people who have an intellectual disability and issues they may be facing with the justice system.

It will probably include collecting information on intellectual disabilities, access to the justice system, and what are more problematic areas that people’s rights need to be protected. We’re also going to be, I expect, looking for information about who actually comes to Citizen Advocacy and why.

We anecdotally know why most do, but this framework will help us to come up with more kind of measurable data that will we’re hoping down the road assist us in further applications for various grants to various foundations.

Angela Walker: So you call it a framework but really it’s a study, right?

Twilah Stone: It is essentially a study that quantifies what we already know as best as we can.

Angela Walker: Right, and then from there you can move forward and say OK how can we rectify this problem or the situation and hopefully tap into some money to do that in the future.

Twilah Stone: Precisely, that’s exactly what we’re trying to do. As part of the framework, the process will also involve us speaking with other groups and organizations who support the kind of work that we do or share in the same issues. There’s really no organization on PEI that does exactly what we do, but there are other organizations that support individuals or families who have intellectual disabilities. So it’s important to involve as many people, like-minded people, as we can.

Angela Walker: How much is the grant that you received from the Law Foundation?

Twilah Stone: We received $5000, so we’re pretty pleased with that. We’ve taken the funds and we have hired a researcher, Haley Arsenault, who is from the Summerside area, and she’s going to actually be conducting and creating the research framework.

Angela Walker: When do you hope to have this completed?

Twilah Stone: The grant money is good for one year so we have until the Fall so we may be able to finish sooner, but it’s nice to know we have the time we need to do it right.

Angela Walker: Ultimately you know what’s your hope here that will come from all of this.

Twilah Stone: My hope is that in a more kind of measurable way we will be able to identify the issues that we already sort of know our advocates and individuals with disabilities are facing do you know if there is access to the actual justice system we know that that’s been an issue that some of our matches have been facing.

There are always issues around language and communication barriers for people who have an intellectual disability you know when they’re dealing with the service system or with let’s say medical professionals who really may not have a lot of experience in communicating with people who maybe communicate differently than the rest of us.

We have unfortunately been made aware of a number of issues in the past a lot of people who have an intellectual disability. issues around being able to make decisions for themselves this is around safe and appropriate affordable housing for people like.

We have a number of people that we have matched who have had their human and legal rights taken away from them by being placed under guardianship because the service system questions their competency in their ability to give consent and make appropriate decisions when we know that with the right kind of help and support these issues do not have to come to the forefront.

If we could create a little roadmap that would come allow us to gain additional funding down the road we could certainly help a whole lot more people.

Angela Walker: Thank you for your time.

Twilah Stone: You’re welcome.

Matt Rainnie: That was Twilah Stone, the president of the board of PEI Citizen Advocacy inc.