Overwhelmed? Help for Ontario caregivers is a call away

By Louise Kinross

Last week a new help line for Ontario caregivers, including parents of children with disabilities, was launched by the Ontario Caregiver Organization, an independent non-profit founded last year by the Ontario Ministry of Health. The line, available 24-7 in French and English, is a direct response to a 2019 survey of over 800 Ontario caregivers conducted by the Ontario Caregiver Organization and The Change Foundation, a think tank dedicated to improving health care in the province. We interviewed Amy Coupal, CEO of the Ontario Caregiver Organization, to learn more.

BLOOM: Why was there a need for this help line?

Amy Coupal: Seventy-seven per cent of caregivers in the survey said they wanted one place where they could go for information, resources and support. That was the primary driver in developing and launching the help line.

BLOOM: How does the line work?

Amy Coupal: It’s available 24-7 in French and English, and we have a live chat site on weekdays from 7 a.m. to 9 p.m. We also have a website that has lots of information about emerging programs and services. Some people prefer the phone and some prefer to use chat if they’re at the bedside and not able to have a phone conversation.

BLOOM: Who does a caregiver reach on the line?

Amy Coupal: They are community resource specialists who will help you identify programs and services available in your community, as well as organizations and associations you can connect with provincially, depending on your particular caregiving role. Something we are just launching is a peer-support network.

BLOOM: Is that something that could benefit a parent of a child or adult with a disability?

Amy Coupal: The needs we will fill are just emerging, but if there’s a cohort of caregivers who fit that description—who are parents of children or adults with disabilities—we would work with them on developing a customized peer-support solution. One of the things we’re very enthusiastic to do is work in partnership with other organizations. We want to look at what programs already exist, and would be delighted to connect people to those programs. Where there’s a gap, we’ll be stepping up.

BLOOM: What kind of help can a caller get on the help line?

Amy Coupal: It depends on what issue they bring. That will often be dictated by where they are in the caregiving journey.

If someone is new to caregiving because someone has become ill, or their child has received a diagnosis, it might be an exploratory conversation to figure out what services and resources they need to be connected with. If a caregiver is further along, it might be looking at what supports they need to sustain themselves. We will always try to gain an understanding of what the caregiver feels is the most important thing we need to talk through.

For example, if a caregiver is feeling overwhelmed or challenged, we can look at what respite services are available.

BLOOM: Are there any additional dollars being put into respite services? Or will they just be directed to existing services?

Amy Coupal: It does mean referring them to existing services. Our focus is connecting people with what’s in the community, and gathering information about where there may be gaps. Over time, we’ll be able to analyze areas where we understand there are issues, and work on them in collaboration with other organizations.

BLOOM: What were some of the key things you heard from caregivers in the survey?

Amy Coupal: One thing I would underscore is that we know a third of caregivers are not coping well emotionally, and that means higher levels of stress, negative emotions, and really finding the process overwhelming. That increases to half when the caregiver is looking after someone with mental-health challenges.

We also know a third are facing financial hardship. They may be paying out of pocket for additional services, or for the cost of transportation and parking. And for caregivers who are working, they may have challenges around employment, underemployment, and losing a lot of work time as a result of their caregiving responsibilities.

BLOOM: What happens if a caller to the help line needs professional help, or is in crisis?

Amy Coupal: The people we have answering the phone are trained in mental-health first aid. So they’re able to identify—am I in position to support this person, or is this a situation where it would be more appropriate to call 911.

We certainly know caregiver distress will be a factor and to that end, we’ve planned to give everyone a call back. So perhaps if a person calls with a high degree of distress, and maybe right now we can only deal with what’s right in front of you, to extend your rope so you can keep going, and then we’ll call back and follow up to see how things are going and look at practical solutions to keep you sustained. Perhaps it’s counselling. One of the things we want to be sure of is that we are offering both paid and unpaid options.

The other thing is there’s no limitation on caregivers calling us back, as a situation evolves.

BLOOM: How is the help line funded?

Amy Coupal: The Ontario Caregiver Organization is funded by the Ontario Ministry of Health and this is one of the initiatives we’re working on.

BLOOM: Do other provinces have similar help lines?

Amy Coupal: There are three other provinces—Nova Scotia, Alberta and British Columbia—which all have some variation on a help line based on the resources they have. They’re not always 24-7.

BLOOM: What has the response been since the line’s launch?

Amy Coupal: We’ve had a lot of calls. Almost immediately, when we started to share the information, the phone started to ring.

BLOOM: Is there anything else you’d like to tell our readers?

Amy Coupal: We are here for caregivers, regardless of age, condition or geography, across the province. I would want members of your community to know that they’re not alone, and we are absolutely there for them.

I also wanted to mention that I have a personal connection with Holland Bloorview. My brother was a patient there when it was Hugh MacMillan, and I spent a lot of my childhood hanging out there when he was getting his wheelchair fittings or visiting the dentist. I had my first swim in your pool. I later worked in the pool, teaching swimming and lifeguarding. I was there when Lady Di came to visit. I was on the pool deck when she came in in a dusty rose pink suit, in heels, and crouched down to talk to the children in the pool. Everyone was starstruck.

I spent a lot of time at Hugh MacMillan. When I was a teenager I sat on a panel there about being a sibling.

The new caregiver help line is 1-833-416-2273.  Or visit the Ontario Caregiver Organization website to learn more about the help line and other supports. You can download the 2019 caregiver survey.