“Many of you may be aware of or have used VIHA’s home support services program, but not so many are aware that they have other choices when you require more assistance with daily living. Home support services provide a home care which we pay for according to our income. This service, though staffed by excellent workers, can be inconsistent and limited. Staff are only allowed to perform certain tasks and you may be assigned a different worker each day. The other option, which many of us do not consider, or may not be aware of is CSIL: Choice in Supports for Independent Living,” explained Quadra Island resident Ann McLean, in her rich Scottish brogue.

Talk At Gorge Hall

“This is a self directed program whereby the Health Authority provides funding for you to hire your own staff, and manage your own care, in your home.” 

She was speaking to a circle of Cortes Island residents in the Fireside Room at Gorge Hall, on Cortes Island. The Cortes Island Seniors Society and Seniors Helping Seniors sponsored the event. 

Husband Suffers From MSA

McLean’s husband suffers from a rare neurological progressive degenerative condition called Multiple System Atrophy (MSA). 

“His symptoms first appeared in 2004. At first they progressed slowly. Balance was the biggest concern. He suffered many falls and injuries. His condition was treated as Parkinson’s until 2012, when he was diagnosed as having MSA. There is no known cause, cure or treatment – only Parkinson’s medication, which helps his balance a little.”

“In 2009, I started receiving and paying for my client portion for some respite care from home support services. As the disease continued to progress, the respite time was not enough. My husband could not be left unattended and it was taking a toll on my health. My health case manager was pressuring me to put my husband’s name on a waiting list for long term care. He is mentally competent and I felt that long term care was not right for him.”

Learning About CSIL

McLean learned about CSIL through a radio program. 

According to the study Caregivers In Distress: A Growing Problem (p 14): 

“The data indicates that caregivers of clients under the CSIL program have a 50% lower risk of caregiver distress even though they are caring for someone who, on average, has a higher level of complex care needs than nonCSIL home support clients.”

McLean added, “At that time, in 2017, there were only 900 people in the province receiving CSIL funding. These numbers haven’t changed much. There are still only a little over 900 in the program. I think this data indicates we are not very well informed about this choice.” 

Applying for CSIL

She asked her husband’s case manager for an application. It took a year for this to be processed, during which time McLean was told her husband would be better off in a home. She finally signed a contract with Island Health on August 3, 2018. 

“The first two months involved finding an accountant, registering as a business, setting up an account with WorkSafe BC and opening a business account. I also began recruiting and training staff. Having had no past business experience, this was a steep learning curb with a few bumps along the way. In retrospect, It was well worth the wait and work involved.”

“My husband now enjoys the best care possible. His quality of life is greatly improved and he is happy to be cared for in the comfort of his own home.” 

“As for me, I have a life again – with some time to pursue my own interests and take care of my health. The amount of time required for my CSIL accounting amounts to a couple of hours a month. It amounts to printing the payroll and writing the cheques. The accountant takes care of everything else.”  

 Every Minute Counts

The funding applicants receive is determined by the supportive lifestyle plan they submit. McLean advises them that when taking care of a high needs disabled person, every action and every minute counts. 

“Funding is provided for every hour of care required and the current rate is $31.47 per hour. So if you are approved for 200 hours per month, you would receive $6,294 which would be deposited into your CSIL business account. You will still be assessed a client rate, based on your income, which you will have to contribute to these funds …” 

“You may purchase a limited amount of administrative expenses, business supplies, safety items, recruitment advertisement and accounting fees. 

“I employ an accountant and four care aides. They have all been with me for more than a year now. My care aides all have all excellent nursing skills. They keep extensive notes on my husband’s health and daily routine.” 

Savings To Canadian Taxpayers

According to Caregivers In Distress (p 3), CSIL is much more cost effective than putting people in homes:

“ … Seniors who are not able to live independently at home will overwhelmingly reside in one of B.C.’s 28,000 publicly funded residential care beds at a much higher cost than living at home with support.”

“ … Statistics Canada estimates there are approximately one million unpaid caregivers in the province. According to the Health Council of Canada, unpaid caregivers provide roughly three-quarters of care for people receiving care at home in Canada. Replacing this care with paid caregivers would cost over $25 billion per year in Canada, or $3.5 billion in British Columbia. The work of caregivers can feel undervalued and at times invisible, but there is no question that the work they provide every day, in every corner of the province, is a critical pillar in our health care system, allowing seniors to remain at home and delay – or even prevent – costly care options, such as subsidized residential care or hospital stays.” 

Top photo credit: “Sunrise over Quadra Island” by Hugo Chisholm via Flickr (CC BT SA, 2.0 License)