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Parent Advocates Leave Legacy for Community

By Contributor
October 19th, 2018

During the past three decades, a pioneer group of parents have been at the forefront of the often challenging pathway of advocating for children with developmental and physical disabilities. In late-September, the trail they blazed through the Kootenay Advocacy Network/Taking Action for Special Kids (TASK) was split in nine exciting different directions with donations totalling $460,000.

Started almost 35 years ago in Nelson, TASK was originally a large organization of doctors, physiotherapists, occupational therapists and professionals focused on supports for kids with a variety of different challenges. When their son Jonathan was born 32 years ago with Down syndrome, Vince and Shellee DeVito entered the world of advocacy established by TASK.

“You get involved because you have to and you want to see things happen,” says Vince DeVito. “Not everybody is equipped to advocate for your child. Over all those years, I was asked a lot of times to advocate for somebody’s child, but I preferred to show them how to advocate for their own child. You need to be forceful, strong and stick to your guns.”

As parents who were faced with similar circumstances started to come on board, TASK became a vital component of the regional community. As their children got older, the parents involved faced new challenges and over the years plenty of wisdom was gained that helped others.

“The journey is filled with trials and tribulations,” says DeVito. “Thirty years ago, inclusion in the schools was not as mainstream as it is today. We were somewhat pioneers in ensuring our kids went to school and did not go to a special classroom. We didn’t want these kids to be in a special classroom in the basement hidden away from everybody. It’s important to be part of a community and be included. We had some battles with the school board where we did get some support, but we also got pushback.”

With a mandate to provide optimal supports and opportunities for their children, the group of community leaders organized events and fundraisers that were embraced by the region as a whole. From the signing choir and ski lessons to parades and picnics in the park, it was a way of building connections with others who may not have a comfort level when it comes to the sometimes painful journey that comes along with ensuring all children are treated the same.

“People with developmental and physical disabilities are just like everyone else,” says DeVito. “They just want to be part of a community. Far too often they are marginalized, so bringing them together in groups for activities and have fun has been wonderful.”

Over the years, TASK began working with other groups like the Kootenay Society for Community Living (KSCL). In Nelson, TASK evolved into the Kootenay Advocacy Network and took over helping to provide low-income housing for those with developmental disabilities or a variety of spectrum disorders.

Earlier this year, the volunteer board for the Kootenay Advocacy Network that includes Laurie and Brian Wood, Sharon Parsons, Dorothy Hatto, Wayne Chanasyk and Liz Nunn, and the DeVito’s, decided that it was time to turn over the foundational work of the last three decades to others who are now doing similar good work in the region. They sold the residential support home they were operating to BC Housing and were faced with what to do with the cash earnings from their years of effort.

At a modest gathering in the Adventure Hotel banquet room in late-September, the parents who gave so much to their own children and those of others invited nine community organizations to their final meeting. It was there thatKootenay Kids, Nelson CARES, School District #8, Selkirk College, Bigby Place, the Nelson Food Cupboard, WE Graham Community Service Society and Friends of the Family were provided individual cheques for projects that will now carry on important work in a variety of ways.

“I’ve done a lot public speaking and I came in thinking this would be no big deal,” says DeVito. “But it hit me in the heartstrings because we have been doing this for a lot of years, we have some great friends that have been involved. It became very real that evening that we are going to give this money away and come to an end. It’s been wonderful and enjoyable, so it was emotional to be in that room.

“I’m very proud of what we’ve done, we created a legacy. I hope that going forward all these organizations and committees that we donated the money to will carry on so that the legacy can move forward.”

TASK has now closed the chapter on its work in the community, but the goal of striving for a more inclusive society is one that will continue.

“There will always be trepidation,” DeVito says of how people perceive others with developmental and physical disabilities.

“No matter how forward a community can be, you are always going to get people that just don’t get it. And if you don’t get it, you don’t get it and never will. That’s okay because there are many who do get it, who are accepting and patient and are willing to have all these folks as part of our community. It makes us all better. If you eliminate anybody from a community, whether it’s somebody with disabilities or someone of a different nationality, it’s just not right.”

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