National ME/FM Action Network’s
Canadian ME/FM Task Force – UPDATE
Tuesday, June 5, 2018 – 11 a.m.
Margaret (Parlor) and I met with the Senior Assistant Deputy Minister of the Accessibility Task Team and with the Executive Director of the Office for people handicapeess.
On February 22, 2016 Margaret and I had a meeting with the Director-General of the Office of Disability Issues and Director of Parliamentary Affairs, at which time we presented the ME/FM issues that our community is faced with.
In the meeting on Tuesday, we pointed out that nothing had improved since that time and we therefore reiterated the difficulties the ME/FM community faces.
In May 2018 the National ME/FM Action Network had received a grant application, although numerous applications had been sent to other disability organizations in the past.
Before applying for this particular grant, you must first qualify as a disability organization which ME/FM organizations were not considered. Finally, we have passed this hurdle and from now on any communications to disability organizations will also include the National ME/FM Action Network.
We requested this meeting on Tuesday as the way the application is written, organizations with invisible disabilities are not in any position to qualify. On Tuesday we pointed this out to them that this is an oversight that must be corrected. The way the application is structured, the disability is presented under body functions and structure and as we have all these functions, both the Disability Tax Credit and the grant application ends up excluding the invisibly disabled. In view of this, doctors do not believe ME/FM people qualify for the credit.
Rather than basing disability under the body functions & structure, it would make more sense to base disability on participation and activity. [See model of disability analysis in newsletter 106].
In preparing for this meeting, Margaret and I went over the February 22, 2016 meeting which was published in our ‘Quest’, Spring 2016 quarterly newsletter. [Issues of Quest are available on the National ME/FM Action Network’s website from the beginning in 1993 to 2017. Current issues are to the Network’s members.]
As there are many disability issues covered in this newsletter relating to disability i.e. The Convention on the Rights of Persons with Disabilities (CRPD), Analyzing Disability, Dr. Alison Bested and Dr. Lynn Marshall’s Functional Capacity Scale and an Activity Log that some of you may not be aware of, I am referencing the Link to this newsletter for your information.
What is of particular importance of Tuesday’s meeting is that it was finally understood by the people at the meeting that people with invisible illnesses fall in a different category and are being overlooked and forgotten and are therefore not receiving the medical care and assistance they deserve.
We are encouraged by the willingness now to make changes. As matters develop, we will keep you informed of developments every step of the way.
Sincerely
Lydia
To view newsletter No. 106, please go to:
http://www.mefmaction.com/images/stories/quest_newsletters/Quest106.pdf
