Families team up to launch West Shore day program
In his Henrik Sedin jersey and padded helmet, Shayne Downton smiles and hugs his mom, and goes off to watch Disney cartoons.
Gregarious and friendly, the big 19-year-old loves his computer, swimming and delivering newspapers. Born with Dravet syndrome, his motor skills and speech development are similar to a three-year-old and he suffers grand mal seizures, perhaps once a week these days.
“He needs one-on-one care. He can’t be left alone at all,” said his mom Debra Downton at their Langford home. “He has no concept of safety. He could run into the road or burn himself on the stove. And his seizures have increased in the past few years – the bigger he is harder he falls.”
The Downtons and three other West Shore families are bonded together through their adult children, all who live with developmental challenges and all who turned 19 this year. The boys – Shayne and Ben Defrane – have Dravet and autism respectively, with associated behavioural and cognitive issues. The girls – Corrine Eisenstein and Ciarra Blahitka – have cerebral palsy and limited mobility, and are in wheelchairs.
Since turning 19, the group aged out of their Belmont secondary lifeskills day program, but no similar programs for adults, at the necessary level of care, exist on the West Shore.
In response, the parents are launching their own program from scratch, called West Shore InclusionWorks. They are pooling limited funding resources to rent a suitable space, supply it with activity gear, and hire three specialized, full-time care workers.
Each youth is allotted funding from Community Living B.C. (CLBC) for support hours, and together the group has $42,000 per year in funding from the South Island Distance Education School (SIDES) for two years, although it remains unclear if that is enough to pay for the high level of care.
“The plan is to pool whatever funds from CLBC, SIDES into one pot,” said Kris Eisenstein, mother of Corrine. “The question becomes: is that amount enough to sustain one-on-one support for Ben and Shayne and enough for the two girls?”
The group found inspiration from the original InclusionWorks in Victoria, started by Arlene Zuckernick and Eleanor Liddy in September 2010.
Zuckernick said a key goal for the West Shore group is to build partnerships within the community – Victoria InclusionWorks networks with University of Victoria and Camosun, and a number of businesses and agencies.
“You have to look locally for resources, create partnerships and assume you’ll get as much as you give,” Zuckernick said. “You just have to jump in and do it. If you wait for the system to catch up with you, it won’t.”
Where Victoria InclusionWorks focuses on preparing special-needs adults for jobs or volunteer positions, the West Shore group has a different aim, and an added dimension of difficulty. They need to rent a space that’s wheelchair accessible, on a bus route and can meet the specific and complex physical needs of the boys and girls.
“The girls are very sociable, their cognitively a lot higher. Their needs are totally different (than the boys),” Eisenstein said. “But they are physically dependent. That is the catch.”
The parent group says it’s been a frustrating process learning that the Belmont program is shut off and then having barely a few months to cobble together something similar. The stress is mounting – the parents work full time jobs and care for their kids, which is usually a full time task in itself. None of the four teens can be left alone for extended periods of the day.
It’s also frustrating the funding rules change at an arbitrary point – the level of provincial support fell as the kids ticked over to age 19, said Scott Downton, Shayne’s dad. Shayne’s $1,000 per month for respite and support workers was cut by more than half.
“They are out of school, but their needs don’t change,” Eisenstein said. “Their disabilities don’t magically disappear, but the supports disappear.”
“Turning 19 is traumatic,” agreed Zuckernick. “It’s like falling off a cliff, but the system is much better than it used to be.
“I’m impressed with what they are doing. I’m glad someone beyond us is jumping into the same set of challenges. It’s a positive experience – if I had to do it again, I’d do it again.”
Shayne, for one, has spent the last five years at Belmont school – it’s what he knows, thinks about, and is looking forward to in September. With his support worker, he went swimming and shopping at the mall. They’ve helped sort bottles at Alpine recycling and he holds a small paper route with the Goldstream Gazette.
“Shayne talks about school every day, about his computer, about his TA,” Debra said. “They need structured programs. They want to be active members of the community.”
“They had such wonderful support at Belmont and they want to stay in this community,” remarked Lynne-Mari Defrane, mother of Ben. “If we want that to continue, the only way to do that is to set up a program like this.”
“This program has positive potential,” Eisenstein added. “It’s great to put something together, but it’s too bad there is very little suitable out there.”
The parents are reaching out to the community for help, for a space that is affordable and meets the specific needs of the group. For more information on West Shore InclusionWorks, email Debra Downton at firstname.lastname@example.org.