For some, it’s about living in a location with a milder winter or being closer to family members. For others, it’s about being closer to specialized medical care. And sometimes, it’s all about relocating for a new job, or simply needing a change of scenery. Whatever their reasons, some SCI BC Peers, like other British Columbians, choose to move to a different town or city within our province.
Moving is universally acknowledged to be one of life’s most stressful events, regardless of ability. Factor in an SCI, and supports the degree of difficulty is compounded. And if that SCI is high level, the stress is increased exponentially.
The most obvious problem for anyone with an SCI is the challenge of finding affordable, accessible housing. It’s really, really tough. In fact, according to Heather Lamb, one of SCI BC’s information resource specialists, housing is the number one issue that Peers contact her about. The shortage of accessible housing is a long-term, chronic problem in our province, and we could write volumes about that alone.
But there’s an additional layer of complexity that’s specific to people who rely on caregivers to maintain their independence.
Consider the experiences of Ken Legros, C4 quadriplegic and SCI BC Peer, who recently moved from Prince George into his new apartment in central Kelowna— a process that took almost four years to complete.
Legros is originally from Victoria, but had made his home in BC’s north since 1989, where he lived in Terrace and Prince George. “I decided to make the move after going through a rough stretch finding care aids, and after enduring long, cold winters for 28 years,” says Legros.
His first step, once he’d made up his mind to move, was a staggeringly long and drawn out search for a fully accessible apartment that he could afford. He contacted the Canada Mortgage and Housing Corporation (CMHC), which provided him a list of subsidized housing in three different locations in the Interior region.
“Once I had the list, I looked at all the possibilities and evaluated them by accessibility and location,” says Legros. “I came to the conclusion that I wanted to settle in Kelowna, as I have several friends here. With that decided, I contacted the Society of Hope (the largest steward of accessible, subsidized housing in the Okanagan) and requested a housing application. After sending in the application and meeting all requirements, it was all about playing the waiting game.”
And wait he did. Finally, after three and a half years, a suitable unit became available. And that’s when Legros’ work really began.
He had to deal with all the usual exhausting aspects of moving—finding a mover, packing, cleaning, forwarding mail, changing addresses and doing all the time-consuming chores that anyone would have to do. But by far, the biggest challenge turned out to be transitioning his caregiving needs.
Legros has been a client of BC Health’s Choice in Supports for Independent Living (CSIL) program since 1998. CSIL clients receive funds directly from their local health authority to hire, train and manage their own caregiving staff.
Suddenly, he had to deal with giving notice to his caregivers in Prince George, while simultaneously trying to find and hire qualified workers in his new community— he would need support from the moment he arrived. “I had to make sure I had care aids lined up by putting ads online, and then taking applications and doing over-the-phone interviews while still in Prince George,” he says.
But the most jarring aspect of his CSIL transition was yet to come.
“I’d first talked with CSIL staff in the Northern Health Authority months before the move,” he says. “According to them, it would be an easy move—my file would be transferred to the Interior Health Authority, and when I arrived in Kelowna, they would come over do a meet and greet, go over my file and assessment, and it would be done.”
Well, that wasn’t the case.
“After the interview and assessment was done here in Kelowna, I was told by my new case worker that I had to reapply for CSIL—even though I have been on it since 1998 and had 20 years of history,” Legros explains. “So what I thought would be an easy cut-and-dry transfer became a stressful start to the settling into Kelowna.”
CSIL’s lack of portability for those moving within BC isn’t widely-publicized— we had to really dig to confirm this fact when we wrote this story. But you would at least expect that the program’s staff and administrators across the province, including the Northern Health Authority personnel who advised Legros, would be knowledgeable about this aspect of the problem.
Fortunately, Legros was told that CSIL would maintain his level of funding support at his previous, Prince George level while his application would be processed and his needs reassessed.
But when we interviewed him at the beginning of November for this story, he was still uncertain about his status going forward with CSIL. “It’s taken me a month to figure out all this,” he says. “I’m not moving to a different province, so this should be easy—why would my needs change from Prince George to Kelowna? I’m still in the ‘waiting for approval’ stage which is adding more stress, not knowing the outcome. But all I hear from my case worker is, ‘It will be okay, but it still needs to go to a supervisor for approval on hours allowed.’ I won’t know until closer to the end of November. I think that once you’re approved for CSIL, and if you’re moving within BC, you should be able to continue your daily lifestyle, because the criteria and guidelines are the same in all regions. They should not make someone’s life so stressful, and make it so hard to move, for anyone simply trying to better their quality of life.”
Here at SCI BC, we agree—we believe BC Health should have removed this lack of portability from this vital program a long time ago. We’re hoping we’ll have an opportunity to discuss this problem with BC Health.
Caregiving wasn’t the only area where a surprise lay in waiting for Legros. He’d also assumed that, since he wouldn’t be ditching his wheelchair anytime soon, his BC Transit subsidies would also be transferable to Kelowna. But again, that wasn’t the case.
“After 33 years as a quadriplegic, I suddenly had to reapply to BC Transit to get reassessed,” he says. “Despite being registered in Prince George, I needed to prove that I still needed taxi savers and specialized transit. So…let’s add more stress to the move.”
However, he adds that, at the time of writing, BC Transit was is in its final stages of approval, and he was expecting to get a letter of acceptance within acouple of weeks.
For the most part, life’s back on track for Legros now that the bulk of the hard work has been, and he’s settled in his new home.
“Things now are going better. I’ve been trying not to stress, and am just taking the little steps to complete the process for getting the approval for everything. I’m very happy on my decision to move to Kelowna. I’ve wanted to do this for years; start a new chapter in my life. And my new place is great—like a penthouse suite!”
We asked Legros if he had any advice for other Peers contemplating a similar move. Not surprisingly, he says the top priority should be your caregiving and CSIL, if that’s what you rely on.
“Please contact both health authorities for clarifications on the process of file transfer before deciding to move, because when you find out the news as I did, it’s pretty stressful—it leaves you in the dark with more work to do than need be. It’s not like you have enough to deal with just with address changes and the cost of moving to begin with. Above all, good luck in your endeavour and do your homework first. And when it works, it will be rewarding because you’re in a place you want to be.”
Moving: A Priority Checklist
Heather Lamb, SCI BC Information Specialist
- HOUSING: This is obviously the most important factor. Without housing in place ahead of time, I would advise people to be very cautious about even thinking of moving.
- CSIL: Talk to your local (current) case manager, and the Home and Community Care office in destination community, to confirm details of interim CSIL support and the reapplication process required. Also contact the Individualized Funding Resource Centre (IFRC) Society, as they are more familiar with CSIL across the province. (www.ifrcsociety.org)
- CAREGIVERS: Talk to Peers in the destination community to see if they know of any caregivers looking for work, and for their recommendations about the best ways to recruit caregivers in your new community.
- MEDICAL: Ask your current GP for a referral, or talk to family members or peers in your destination community to find a suitable doctor who is accepting patients. Find out whether the doctor will prescribe necessary medications—especially pain management meds. Know the locations and hours of walk-in clinics in the new area. Fill prescriptions before the move to ensure an adequate supply. Have a current list of medications on hand. And know where the closest pharmacy is.
- MEDICAL SUPPLIES: Make a list of medical equipment stores in your new community and ensure they can meet your equipment maintenance and medical supply needs. Have an adequate supply of catheters and other needs on hand before the move.
- PACKING & UNPACKING: Arrange for family and friends to assist with the tedious chore of packing and unpacking. Ensure that necessary items such as a hospital bed or commode can be packed last and unpacked first to ensure they’re available when needed. You might also want to consider rental equipment for a few days during the move.
- TRANSPORTATION: Familiarize yourself with your new specialized and regular transit services, along with accessible parking options and rules. Find out which gas stations offer full serve.
- SUPPORTS: Have a support system in place in your new community—for example, SCI BC Peer connections, family support, and friends who can help out with information and assistance.
- EVERYTHING ELSE: Make a checklist of all the usual businesses and facilities people need to find when moving, such as location of grocery stores, schools, recreation centres, restaurants, and more. Find out which grocery stores or restaurants have delivery—especially for the first days after the move.
Have more questions? Contact the SCI BC InfoLine toll-free from 9:00 am to 5:00 pm, Monday to Friday, at 1.800.689.2477. You can also reach us via email at info@sci-bc.ca.
This article was originally published in the Winter 2018 issue of The Spin. Read more stories from this issue, including:
- SCI Nutrition
- Adaptive Mountain Biking
- Neuromodulation Research
And more!
