WELLINGTON COUNTY – Community Living Guelph Wellington is closing its centres in Harriston, Mount Forest, Fergus, Erin and two centres in Guelph as it transitions to a “person-centred” approach to supporting people with developmental disabilities.
And while person-centred care sounds good on paper, some staff and families are worried it will mean less support and will not lead to better, independent lives for those using the centre and the day programs it once offered.
Victoria Waltham-Kingsley said her 40-year-old son Greg Blagdon, who has Down syndrome, has been using the centre in Harriston for 18 years.
To lose it will mean he won’t see his friends, he won’t be busy with constructive activities all day, and he will lose – not gain – independence, she says, which is counter to one of the aims of the person-centred approach.
Community Living stopped its day programs and volunteer opportunities in March when the pandemic began and has focussed on its group homes and keeping staff and residents safe, healthy and meaningfully occupied.
A recent survey to families about hours of care for loved ones in the day program seemed to be the result of shutdowns due to COVID-19, but in fact was about closing the program, Waltham-Kingsley said.
“March 16 was the last day at program,” Waltham-Kingsley said in a phone interview.
“We were getting emails, but all we heard was about the group homes. What happened to us? We dropped off the face of the Earth.”
She said the day program resumed a few weeks ago, but Greg only gets one hour per week with a worker, who takes him to an activity or a location in the community.
“We’ve gone from 30 hours a week to one or two hours a week. Where can he go? What can he do in one hour?,” she said.
“It’s his goal, his dream to be in a program and to be with his friends. It’s his life.”
Waltham-Kingsley said Greg was able to walk to the centre and his day launched from there.
There were often trips outside the centre – to the library or a swimming pool or a restaurant. But there were also crafts, computer time and social time at the centre.
She said Greg is already spending more time alone at home since COVID and she worries he is becoming bored and depressed.
Joanne Smithers, president of CUPE Local 4392, which represents about 500 developmental services workers, said staff is concerned about job loss.
“But it’s really about the people we support,” Smithers said. “Some were getting six or seven hours a day, five days a week at the centre.
“Now they’ll get two to six hours a week and activities will be based in the community. Parents are calling us in tears.”
Smithers said it’s a bigger blow in rural communities as “there simply are not enough accessible community spaces to meet the need. Day programs were the only option.”
She noted that when the pandemic hit, the union worked with management on a plan to protect both staff and the people they support.
But that situation has become untenable since emergency orders have been extended.
Initiating the new delivery model on the heels of COVID-19, has only made it more difficult on workers, she said, who now must deal with the fears and concerns of family and the people they support.
Laura Hanley, executive director of Community Living Guelph Wellington, said in an email interview the organization has been moving toward the person-centred model for years.
The philosophy behind the change is to integrate people with disabilities into the community and not isolate them in facilities with no interaction with the public.
Person-centred also means individuals can set life goals and choose activities they enjoy doing and avoid activities they don’t like.
“Day services are not ending,” Hanley said.
“They are, and have been, changing. We have been working towards this change for the past several years, where day services will be inclusive and community-based.
“That does mean that the buildings, whether it’s Fergus, Mount Forest, Harriston, Erin or Guelph, will not re-open for day services.”
One-on-one support means tailored support, she said.
“We know that the people we support have unique likes and dislikes. They enjoy spending time with their friends,” Hanley said.
“Through one-to-one support, we can prioritize the activities they enjoy the most, while spending time with people they’re excited to see.”
She added, “There may be times when a person wants to invite two or three friends to do an activity together.
“While the support was initially one to one, it may become four to one by the very nature of inviting other people to come together.”
Hanley acknowledged it may mean fewer hours of support for some people. But it will not mean layoffs for staff.
“We recognize that in this new way of offering service, there may be gaps,” she said.
“Together with the people we support, their families, and the people who matter most to them, we want to plan and address those gaps.
“That may include other community partners and service providers, and we will help navigate those conversations.”
Hanley said staff will now have caseloads rather than run programs at the centre.
Transportation to and from these activities will also be part of case management.
“This new way of offering services is not meant to increase costs for families. Before, if a person wanted to go to Tim Hortons, they were paying for their coffee or snack,” she explained
“If they wanted to attend a class, they still had to pay for it.
“There were some classes offered at the Community Living Centres – these were often offered by volunteers, or community members who rented the space and offered the people we support an opportunity to join in at a reduced cost. “
She added, “We’re going to work with volunteers and community members, in hopes of continuing to offer inclusive and community-based opportunities.”
The agency was to hold a virtual town hall meeting on Oct. 27 to further explain the changes to parents and caregivers.
“CLGW’s role is to provide support that builds confidence and independence, while connecting people with their community,” she said.