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.

B次元官网网址淗e needs one-on-one care. He canB次元官网网址檛 be left alone at all,B次元官网网址� said his mom Debra Downton at their Langford home. B次元官网网址淗e 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 B次元官网网址� the bigger he is harder he falls.B次元官网网址�

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 B次元官网网址� Shayne and Ben Defrane B次元官网网址� have Dravet and autism respectively, with associated behavioural and cognitive issues. The girls B次元官网网址� Corrine Eisenstein and Ciarra Blahitka B次元官网网址� 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.

B次元官网网址淭he plan is to pool whatever funds from CLBC, SIDES into one pot,B次元官网网址� said Kris Eisenstein, mother of Corrine. B次元官网网址淭he question becomes: is that amount enough to sustain one-on-one support for Ben and Shayne and enough for the two girls?B次元官网网址�

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 B次元官网网址� Victoria InclusionWorks networks with University of Victoria and Camosun, and a number of businesses and agencies.

B次元官网网址淵ou have to look locally for resources, create partnerships and assume youB次元官网网址檒l get as much as you give,B次元官网网址� Zuckernick said. B次元官网网址淵ou just have to jump in and do it. If you wait for the system to catch up with you, it wonB次元官网网址檛.B次元官网网址�

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 thatB次元官网网址檚 wheelchair accessible, on a bus route and can meet the specific and complex physical needs of the boys and girls.

B次元官网网址淭he girls are very sociable, their cognitively a lot higher. Their needs are  totally different (than the boys),B次元官网网址� Eisenstein said. B次元官网网址淏ut they are physically dependent. That is the catch."

The parent group says itB次元官网网址檚 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 B次元官网网址� 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.

ItB次元官网网址檚 also frustrating the funding rules change at an arbitrary point B次元官网网址� the level of provincial support fell as the kids ticked over to age 19, said Scott Downton, ShayneB次元官网网址檚 dad. ShayneB次元官网网址檚 $1,000 per month for respite and support workers was cut by more than half.

B次元官网网址淭hey are out of school, but their needs donB次元官网网址檛 change,B次元官网网址� Eisenstein said. B次元官网网址淭heir disabilities donB次元官网网址檛 magically disappear, but the supports disappear.B次元官网网址�

B次元官网网址淭urning 19 is traumatic,B次元官网网址� agreed Zuckernick. B次元官网网址淚tB次元官网网址檚 like falling off a cliff, but the system is much better than it used to be.

B次元官网网址淚B次元官网网址檓 impressed with what they are doing. IB次元官网网址檓 glad someone beyond us is jumping into the same set of challenges. ItB次元官网网址檚 a positive experience B次元官网网址� if I had to do it again, IB次元官网网址檇 do it again.B次元官网网址�

Shayne, for one, has spent the last five years at Belmont school B次元官网网址� itB次元官网网址檚 what he knows, thinks about, and is looking forward to in September. With his support worker, he went swimming and shopping at the mall. TheyB次元官网网址檝e helped sort bottles at Alpine recycling and he holds a small paper route with the Goldstream Gazette.

B次元官网网址淪hayne talks about school every day, about his computer, about his TA,B次元官网网址� Debra said. B次元官网网址淭hey need structured programs. They want to be active members of the community.B次元官网网址�

B次元官网网址淭hey had such wonderful support at Belmont and they want to stay in this community,B次元官网网址� remarked Lynne-Mari Defrane, mother of Ben. B次元官网网址淚f we want that to continue, the only way to do that is to set up a program like this.B次元官网网址�

B次元官网网址淭his program has positive potential,B次元官网网址� Eisenstein added. B次元官网网址淚tB次元官网网址檚 great to put something together, but itB次元官网网址檚 too bad there is very little suitable out there.B次元官网网址�

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 skinmin31@shaw.ca.

editor@goldstreamgazette.com