In preparation for this meeting we documented our personal care needs in detail, we need 30 hours/week assistance excluding assistance with shopping and meal preparation which is provided by friends and people from the church.

The net result, reinstatement of hours that were cut. A good thing for us but really not the way things should be in a perfect world. We have a progressive disease that relentlessly plods on and our service hours should be expanded to keep us independent, in a perfect world that is.

Christine and I were living in an assisted living unit in Orillia where I was receiving 10.5 hours care per week and she was receiving 14 hours care per week as she battled cancer. We both are living with Secondary Progressive Multiple Sclerosis and our move to Cobourg in July 2007 was the direct result of our search for accessible housing, something that was made possible through the diligent commitment of our friends and finding a compliant builder in Mark Rollins at Ryerson Commons.

We had been receiving services through the CE CCAC since moving to Cobourg based on the same hours we received in Orillia although that was understandably reduced to 10.5 hours for each of us when the cancer threat was removed. We both need care in the morning and evening, it is only because we are two people under one roof that we were able to get by with 21 hours of assistance; if we lived independently the minimum time per visit is one hour so the total time commitment would be one third higher, a total of 28 hours.

Outlining the services we received provides a clear understanding of the importance of in-home community services. In these 21 hours we were able to have help with food preparation so we could prepare our own healthy meals with an emphasis on fresh vegetables. Edema is a problem for me that requires wearing special socks, my hands do not work very well and regular socks are a challenge so consequently compression stockings can only be put on and off with help from someone who knows what they are doing. Neither of us can transfer safely into the shower and require help undressing, drying and dressing.

Despite these shortcomings we lead a full life with a strong commitment to our community. Art de Triomphe www.artdetriomphe.org (Christine’s creation) is in its third successful year. I actively advocate for frail seniors and persons with disabilities with results ranging from the establishment of the national award winning Cobourg Wheels/Van Air accessible taxi service to finding funds for an electric wheelchair for a senior amputee.

When we came to Cobourg we also applied for Self Managed Attendant Services — Direct Funding and were placed on the waiting list with the expectation that there would be a three year wait, June 2010 was the expected date for our applications to be processed. We have now been told that this very successful cost saving program is still oversubscribed and not being expanded, we must continue to use the CCAC system that is struggling to provide adequate services to those requiring acute care and is not well-positioned to effectively provide chronic care.

We are people with a chronic, progressive condition for which there is no cure. The CCAC program is designed to best serve the needs of acute care patients rather than the needs of persons with chronic conditions, and it simply makes sense that persons with chronic disease who have the necessary skills and cognitive abilities to self manage their own care plan be on the Direct Funding program. Providing these services through the CCAC is a totally inappropriate use of strained CCAC resources, the unit service cost is considerably greater at the CCAC level than that provided under Direct Funding.

The recent pressure from the CCAC system to reduce our care levels while our care needs are in fact increasing is untenable, we have a progressive chronic disease that is relentlessly progressing and our needs will only increase over time. those with acute care needs and properly categorize us as persons receiving long term care. As a result of these cutbacks our combined care level has been reduced to 18.5 hours per week, dishwashing and food preparation are discontinued, regular showers are reduced to a maximum of two per week and our exercise regimen that three years ago had been established by the physiotherapist from CCAC has been reduced from five times per week to three. Note that this exercise program had been designed by the CCAC physiotherapist to help us maintain our health, the CCAC cuts clearly show that money is more important than our health, is this what you expect from our universal healthcare system?

Enquiring of a care worker about the rationale for eliminating food prep the response was that there are prepared meals that can be purchased which eliminates the need for food preparation. Relegating people to TV dinners and Meals on Wheels is hardly a step forward in terms of nutrition or cost effectiveness, prepared meals cost more although downloading the costs from the MOHLTC to people with limited resources certainly addresses the very narrowminded and short-term pass-the-bill approach to cost reductions that is being forced upon the CCACs. Like most persons with disabilities we are living on a very limited fixed pension, we simply do not have the resources to increase our grocery budget 40% or more buying prepared foods.

After all is said and done it is our health that will suffer and the long-term healthcare cost will be greater. This of course assumes we do not die and relieve the government of it’s obligations, which raises very interesting questions – is there a squadron of MOHLTC employees tracking the life impact of denying needed medical care? Are these service reductions just an inconvenience or are they resulting in shortening the lives of service consumers? Denying the essentials of life is a criminal act….

The relative cost relationship warrants comment here for clarity. The least costly level of long term care is that provided in people’s homes under the Direct Funding program, the cost of providing the same service through the CCAC is 25% greater when only direct costs are considered. Placing people in long-term care facilities is the most expensive and least palatable option, but the system in place actively discourages independence and creates an environment where more people will be moving at an earlier age to long-term care facilities.

We must receive the level of care needed to accomodate the sporadic fluctuations in our needs, a pattern that is distinctly part of Secondary Progressive Multiple Sclerosis. The Province of Ontario has a moral and legal obligation to provide us with the level of care we need, a level of care that must be determined by healthcare providers rather than dictated by accountants with red pencils at the MOHLTC.

Participating in the Direct Funding program it is the most cost-effective, logical way to meet the needs of people with chronic conditions but the government seems determined not to expand this program although it has been proven to be significantly more cost-effective while providing a much higher level of service to the care recipient. The only alternative we have is to rely on the CCAC program that has been cut back significantly, thereby endangering our ability to remain independent, healthy and active as contributing members of our community.

Why is our national  healthcare system in such a deep crisis that the CMA just released a report calling for major change? We have our opinions of course, and  are arrogant enough to believe we have some of the answers. We even think we have some good ideas to fix the problem in Ontario, but telling an entrenched MOHLTC bureaucracy we have a better idea is the ultimate arrogance!  

Does anybody other than those who work for the MOHLTC really believe that the people who created the problem, the people who keep trying to fix it using techniques that have never worked in the past, the people with administrative jobs that are immune to cuts, are  the experts who should be trusted with our health? 

Does anyone else think they can be trusted to look after our interests? NOT ME!!!!! What about you? Tell us what you think, tell us about your experiences.  Have the CCAC cuts had an impact on your life?

ay.