Network meets with staff of HRSDC

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Network meets with staff of HRSDC

Network meets with staff of HRSDC (Human Resources and Skills Development Canada), the federal government department with responsibilities for workforce, disability and income security issues.  Representing HRSDC were a manager from the Office of Disability Issues and a manager from the Program Operations Branch.  Margaret Parlor and Anne Marie MacIsaac represented the National ME/FM Action Network.  The following are notes of the meeting.  As you can see, it was an introductory meeting that covered a range of issues.  We are very hopeful that a active, constructive relationship will develop from here.

 

Notes from National ME/FM Action Network meeting with HRSDC:

On Wednesday (July 10, 2013), we met to discuss disability issues facing the ME/FM community in Canada. The National ME/FM Action Network would like to thank you very much for the time you spent preparing for the meeting and for the open and respectful attention you gave to to the issues at the meeting.

The National ME/FM Action Network is a registered charity that has been serving Canadians with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and Fibromyalgia for 20 years. There were 756,000 Canadians with a diagnosis of ME/CFS and/or FM in 2010 according to Statistics Canada data. The data shows that ME/FM community experiences a high degree of disability and disadvantage. ME/FM patients are an important segment of the disability community in Canada. This fact is not well recognized. That is a problem.

There has been remarkably little interaction between our organization and HRSDC staff considering the importance of the issues. The Network would like to see greater collaboration between our two organizations. Previous interactions include: The Network gave a presentation to staff of the Office of Disability Issues in early 2009. The Network had discussions with the CPP-D program in 2011- 2012. Dr. John Wodak, who volunteers with our organization, sits on a CPP-D roundtable. The Network applied for a Social Development Partnership grant in August 2012 and was turned down.

At yesterday's meeting, we talked about the symptoms of Myalgic Encephalomyelits/Chronic Fatigue Syndrome and Fibromyalgia and the type of impairment that results. The key disabling feature is reduced mental and physical activity levels. Think of a flashlight with weak rechargeable batteries. It might be able to produce a good beam of light for a short period, but the beam cannot be sustained for as long as normal. It doesn't become fully functional after being recharged. Similarly, people with ME/CFS and/or FM might be active for periods of time but they cannot sustain the activity. A good night's sleep doesn't return them to full functionality.

The reduced activity levels play havoc with their lives. Some people have to cut back on their school or employment, and some cannot get to school or work at all. The impairment affects social, family and recreational activities as well. I showed you a functional capacity scale that measures the range of functioning from level 1 (dependent-bedbound) through partial functioning to levels 9 and 10 (full functioning). The Network would argue that anyone at level 6 or lower is disabled under CPP-D criteria, with level 7 being borderline. For people below this threshold, there are issues around income support, social services and community participation. For people still able to work or study, there are issues around accommodation such as reduced demands, part time, or allowance for absences.

ME/CFS and FM are very much physical illnesses. It was noted at the meeting that reduced activity levels can result from other causes like depression or lack of motivation. We agree, but that does not mean that ME/FM, depression and lack of motivation are the same or should be treated the same way. The automatic response of many people to someone with reduced activity levels is to tell that person to push through the problem. That might work for some people with depression or lack of motivation but it can be terrible advice for someone with ME/CFS or FM. The responsible thing for people with ME/CFS and/or FM to do is to function at their capacity level. Functioning above that level puts their health at risk. Patients who refuse to be pushed beyond their level should be supported, not criticized.

There seems to be a fear that acknowledging someone who is operating at reduced levels would send the signal to others that they can operate at reduced levels as well. For example, arranging home instruction for a homebound youngster could send the message to classmates that they can stay home whenever they want. It is hardly fair to deprive the homebound youngster of his education because of that possibility. That would be equivalent to forbidding anyone from using a wheelchair for fear that other people would want to use one too.

The lack of recognition of ME/FM disabilities causes tremendous suffering within the patient community. It puts great stress on families and relationships. It is not a wise or productive way to manage Canada's human resources. Respecting the disability and handling it appropriately leads to better results.

We talked about how other disabilities were ignored or poorly handled in the past and then moved to the right footing. We looked at how autism was misunderstood and off the disability radar screen a few decades ago but is better understood and well accepted as a disability today. Mental illness is another topic that is being built into the disability model. The comment was made that ME/CFS and FM (along with related illnesses like Multiple Chemical Sensitivities) will be sorted out and accepted as disabilities sometime in the future.

Our question is simple. Why wait for sometime in the future? ME/CFS and FM are disabilities and are going to be accepted as disabilities. The sooner it happens, the less suffering there will be for patients and their families and the more efficient Canada's human resource system will be.

The Network thinks that HRSDC can play an important role. We would like to put together a list of ways that HRSDC could help. Some possibilities include

• reviewing disability policies and programs to ensure that they cover the full scope of disabilities and that people with ME/CFS and/or FM have fair and equitable access

• reviewing disability websites and documents to ensure that ME/FM issues are presented and that the presentation is fair

• including the ME/FM community on committees dealing with disability issues

• organizing meetings and conferences to examine the interests of the ME/FM community

• organizing or funding awareness campaigns to sensitize the public, employers, educators etc about ME/FM issues

• assigning HRSDC staff to work with the ME/FM community


As well, there is a need for research into ME/FM issues and there is a need for community development.

We have asked to meet with the Minister to discuss this situation because we believe it is important for her to become involved with such a large and needy community. We would like to participate in the upcoming federal budget submission process and would like to present these initiatives along with initiatives we have discussed with the Health portfolio.  In order to make our presentations as productive as possible, we would appreciate your help in developing these ideas.  Where these ideas do not fall within your scope of responsibilities, we hope you can point us to others within the department who could help.

It is important to emphasize that the tide is changing. There is growing recognition across the country that ME/FM issues can be handled better. One very positive development has been the opening of a speciality clinic for ME/FM and Lyme disease in BC. The time is very ripe for the types of initiatives we are proposing.

At the meeting , you outlined some of the programs HRSDC offers, including the Social Development Partnership grant program, the Enhancing Accessibility grant program, and the information program about the Registered Disabilities Savings Program.

We understand that there were only 17 successful applicants among about 340 groups that applied for a Social Development Partnership grants. We appreciated the opportunity to apply and we appreciated the feedback you gave on our grant application. We are considering the feedback carefully and will take it into account the next time the competition is run (likely two years from now).

We recognize the importance of the Enhancing Accessibility grant program for people with a wide range of disabilities. There are a number of ways that this program could benefit people with ME/FM or MCS (examples: quiet room, ventilation, webcasting), and we ask that the program description make this more clear.

The Network was concerned that our inability to put together a standing offer for the RDSP program might mean that information about the program wouldn't be shared within our community. We were relieved to learn that successful applicants could be asked to provide information to our community. Yes, we would like to be hooked up with a successful applicant.

We left you with a number of resources including brochures, the Overviews of the Canadian consensus documents for ME/CFS and FM, the CPP-Disability Guide which includes the functional capacity scale, and several newsletters. As you know from reviewing our website, there is much more information there.

To summarize, the ME/FM community has a number of disability issues that cannot wait. This meeting was very useful to begin developing a relationship that will benefit the ME/FM community while furthering the aims of HRSDC.

Thank you for the meeting and we look forward to working through these issues with you.

Margaret Parlor
President
National ME/FM Action Network

 

 

 

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