Participating in the ESDC consultative process:

News - NETWORK NEWS

Participating in the Employment and Social Development Canada (ESDC) consultative process: In the answers to the Questions on the Order Paper

http://mefmaction.com/index.php?option=com_content&view=article&id=486:government-provides-information-on-mecfs&catid=69:networknews&Itemid=287

the Minister responsible for ESDC made the following statement:

ODI [the Office for Disability Issues within ESDC] invited the National ME/FM Action Network to participate in a consultative process, as part of its efforts to consult with stakeholders on the eligibility requirements for the creation of a national funding stream. The National ME/FM Action Network declined to participate in this process.

ESDC put forward a proposal under which national disability organizations would compete for funding.  ESDC contacted a number of disability organizations, including the National ME/FM Action Network, inviting them to complete a questionnaire and to participate on a conference phone call.  The  response of the National ME/FM Action Network is summarized in the following statement:

[T]he SDPP-D funding proposal would do little to address the very serious challenges facing Canadians with ME/CFS and/or FM.  The National ME/FM Action Network is very interested in discussing the situation facing Canadian with ME/FM with ESDC and ODI. The SDPP-D consultation process does not provide an appropriate forum for these discussions.

Here is the full correspondence that was exchanged between the National ME/FM Action Network and ESDC.  Look in particular at the questionnaire and ask what it means.

 

***

 On 2014-02-07 06:52, This e-mail address is being protected from spambots. You need JavaScript enabled to view it wrote:

Dear Ms. Parlor,

Thank you for clarifying how you would best like to engage with the Office for Disability Issues. For information, SDPP-D funds will be made available to all Canadian not-for-profit organizations pursuing activities in line with the objectives of the Program through periodic competitive calls for proposals.  Future calls for proposals will be posted on the Department’s website at: http://www.hrsdc.gc.ca/eng/disability/social_development/index.shtml.  If you would like, I can also add your organization to our mailing list to apprise you of upcoming calls for proposals under the SDPP-D.

 

Sincerely,

 

Terri Champagne

819 624-7668

 

MEFM Action Network [mailto: This e-mail address is being protected from spambots. You need JavaScript enabled to view it ]

 

Ms Champagne

Thank you for the follow-up.

As previously stated, the SDPP-D funding proposal would do little to address the very serious challenges facing Canadians with ME/CFS and/or FM.

The National ME/FM Action Network is very interested in discussing the situation facing Canadian with ME/FM with ESDC and ODI. The SDPP-D consultation process does not provide an appropriate forum for these discussions.

 

Margaret Parlor

President

National ME/FM Action Network

 

On 2014-02-04 09:55,  This e-mail address is being protected from spambots. You need JavaScript enabled to view it wrote:

Dear Ms. Parlor,

The Social Development Partnerships Program – Disability Component (SDPP-D) would like to thank you for your email below.  As indicated in our initial email dated November 21, 2013, we are engaging national disability organizations in a conversation on the potential creation of a national funding stream aimed at supporting national disability organizations to enable them to undertake activities that further the inclusion of people with disabilities. Specifically, we are seeking the input from national disability organizations on potential parameters for a national funding stream such as: eligibility, partnership and leveraging to name a few. The consultation process is winding down and it has come to our attention that we have not received a completed questionnaire from the National ME/FM Action Network.

Should you wish to participate in this consultation process, please complete the attached questionnaire and return it to me by end of day Friday, February 7, 2014.  Upon receipt of the completed questionnaire, an invitation to participate in a telephone meeting will follow. This is meant to provide an opportunity to elaborate on your input regarding the parameters of this funding stream. Please contact me should you have any questions.

 

Thank you for your attention. We look forward to receiving your input.

 

Terri Champagne

(819) 624-7668

 

From: MEFM Action Network [ This e-mail address is being protected from spambots. You need JavaScript enabled to view it '; document.write( '' ); document.write( addy_text11791 ); document.write( '<\/a>' ); //--> This e-mail address is being protected from spambots. You need JavaScript enabled to view it
Sent: 2013-12-05 3:22 PM
To: Champagne, Terri T [NC]
Subject: Fwd: TR: Invitation to Stakeholder Engagement Process / Invitation au processus de consultation des intervenants

 

Terri

Yesterday, I sat down to work on the questionnaire you sent as part of the consultation process around how the $11M annual fund of the “Social Development Partnership Program – Disability Component” (SDPP-D) should be administered.

Then the phone rang.

 

The caller was a young man named Ryan who suspects he has Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome. His life started out very well. He finished school, got a good job, and was setting aside money to buy a house. One day he caught a bug. Now, years later, he is still not well enough to return to work. Ryan's symptoms include reduced activity levels, difficulties with concentration, crashing after exertion, feeling dizzy when standing, severe headaches, sleep dysfunction and sensitivities to chemicals. These are all common and disabling of symptoms of ME/CFS. He doesn't have a diagnosis. He doesn't have a doctor to help him work through the illness. His savings have run out and he doesn't have any source of income. The people surrounding him don't know about ME/CFS. What does he do now?

After I hung up the phone, I asked myself how SDPP-D funding would help Ryan.

Maybe, through some miracle, we could carve out a project that both helps our community and attracts the attention of decision makers. We tried hard in 2012 and did not succeed. Then we might get a few hundred thousand dollars for two or three years and have to start again. The government would think that the needs of ME/FM community had been addressed. But it wouldn't be true.

The problems in the ME/FM community have been ignored for so long that they have grown to massive proportions. There are 756,000 Canadians who already have a diagnosis of ME/CFS, Fibromyalgia or both. The cost to the Canadian economy is in the billions of dollars a year in lost productivity alone. The people who have been diagnosed, and the ones like Ryan who might be affected, need greatly increased support from the health care system, more investment in research, better access to social benefits, and more public awareness. These are the barriers they face as disabled Canadians. The SDPP-D might be part of the solution, but it would be only a small part. What is needed is major government attention and major government investment.

We at the National ME/FM Action Network are very proud of what we have accomplished since our founding 20 years ago. We spearheaded the development of diagnostic and treatment protocols for both ME/CFS and FM. The ME/CFS diagnostic protocol is so highly respected that sixty world class researchers and clinicians have written the US Secretary for Health and Human Services recommending that it be adopted as the US standard. We developed a Sourcebook for teachers of students with ME/CFS and/or FM. We intervened at the Supreme Court of Canada in a wrongful dismissal case. Our founder was given a medal by the Governor-General for her work. For a full list of our accomplishments prior to 2010, please visit our website. In the last few years, we have done a lot more including:

  • hosting an international conference bringing clinicians and researchers from around the world to Ottawa
  • publishing a guide for applying for CPP-Disability with ME/CFS or FM, a very important tool since many people with these illnesses have to navigate the system with very little support
  • working with the BC government to establish a Complex Chronic Disease Program based at the Women's Hospital in Vancouver
  • continuing to support the community across Canada through our website, facebook page, publications, newsletters, discussions and hotline.

 

We have done this work with very little money. We have been able to do as much as we have thanks to volunteers. Should so much responsibility be placed on volunteers? Our financial statements are available for public view at the Canada Revenue Agency's charity website. You will see that we rely on memberships and donations. The only government funding we have received in many years was a $23,100 grant from the Ottawa Trillium Foundation in 2011 to provide specific services at the international conference (translation, recording, newsletter). We have found it very difficult to raise money from outside sources. One reason is the lack of recognition of ME/CFS and FM. A recent study noted that fund-raising for ME/CFS, FM and Environmental Sensitivities was a cross-jurisdictional problem which the author attributed to stigmatization.

No, the SDPP-D is not the answer for Ryan or for the ME/FM community in Canada. The difficulties in the ME/FM community are so large that a separate consultation process is desperately needed. The ME/FM community needs to talk to government, and the government needs to talk to the ME/FM community. Partnership is needed. We are ready.

We have to invest our time and energy in activities that will yield benefits for our community. We will be turning our attention to the upcoming International Conference in San Francisco in March and the annual awareness day in May, along with our ongoing activities. Let me add that I have been invited to give a presentation at the International Conference. The presentation is based on statistics compiled from Statistics Canada's Canadian Community Health Survey. I would like to be able to report to the Conference that the Canadian government has recognized the importance of the statistics and has opened dialogue with us.

Margaret Parlor

President

National ME/FM Action Network

 

-------- Original Message --------

Subject:

TR: Invitation to Stakeholder Engagement Process / Invitation au processus de consultation des intervenants

Date:

2013-11-29 14:46

From:

< This e-mail address is being protected from spambots. You need JavaScript enabled to view it >

To:

 

Cc:

< This e-mail address is being protected from spambots. You need JavaScript enabled to view it >

 

English follows

 

Bonjour,

 

Ce courriel fait suite à mon message du 21 novembre où j’invitais votre organisation à participer à notre processus de consultation (voir ci-dessous).

Ce courriel vous rappel qu’en complétant le questionnaire, vous nous aiderai dans le développement d’un volet de financement national au sein du Programme de partenariats pour le développement social, composante Personnes handicapées (PPDS-PH).  Je vous demande d’envoyer le  questionnaire compléter (en pièce jointe ci-dessous) à Terri Champagne ( This e-mail address is being protected from spambots. You need JavaScript enabled to view it ) d’ici vendredi le 6 décembre, 2013.  Si vous souhaitez obtenir un autre format accessible, veuillez nous en informer.

Une fois que vous aurez compléter le questionnaire, nous vous contacterons au sujet de votre participation à une téléconférence, qui aura lieu au mois de décembre 2013 ou janvier 2014.  N’hésiter pas de nous contacter si vous avez des questions.

Nous vous remercions de votre attention.

Veuillez agréer l’expression de mes sentiments les meilleurs.

 

********************************************************************

Good day:

 

This is a follow-up to my email of November 21st in which, I invited your organization to participate in a stakeholder engagement process (see below).

 

This email is a reminder that the completion of the questionnaire will help us in our work regarding the development of a national funding stream in Social Development and Partnership Program – Disability (SDPP-D).  Please return your completed questionnaire (see attached Microsoft Word document) to Terri Champagne ( This e-mail address is being protected from spambots. You need JavaScript enabled to view it ) by Friday, December 6th, 2013.  Should you require another accessible format please let us know.

Once you have submitted the questionnaire we will be in touch to arrange a time for the teleconference, which will take place either in December 2013 or January 2014.  Please contact us should you have any questions

 

Thank you for your attention.

 

Regards,

 

Genevieve Cardinal
Administrative Assistant / Adjointe Administrative

Programs Division / Division des programmes
Office of Disability Issues / Bureau de la Condition des Personnes handicapées

Income Security and Social Development/Sécurité du revenu et du Développement social

Department of Employment and Social Development/Ministère de l’Emploi et du Développement social
Email: This e-mail address is being protected from spambots. You need JavaScript enabled to view it  

*NEW* Tel: 819-624-7667 / *NEW* Fax: 819-624-7680

 

From: Massie, Etienne-René [NC] 

Sent: 2013-11-21 2:14 PM
Subject: Invitation to Stakeholder Engagement Process / Invitation au processus de consultation des intervenants

 

English follows

Bonjour,

Au nom des responsables du Programme de partenariats pour le développement social, composante Personnes handicapées (PPDS-PH) au sein d’Emploi et Développement social Canada (EDSC), j’aimerais vous inviter à un processus de consultation afin d’orienter l’élaboration des paramètres pour un volet de financement national. Le processus comporte deux étapes. La première consiste à répondre au questionnaire ci-joint, et la deuxième consistera en une téléconférence où on discutera des enjeux soulevés dans le questionnaire. Vos commentaires permettront aux responsables du programme de prendre des décisions concernant l’admissibilité des demandeurs, les modèles de financement possibles et les paramètres des prochains processus concurrentiels. Pour un aperçu du PPDS-PH, veuillez lire le document d’information ci-joint.

Veuillez trouver ci-joint, une version Word du questionnaire. Une fois rempli, vous devrez envoyer le questionnaire à Terri Champagne ( This e-mail address is being protected from spambots. You need JavaScript enabled to view it ), ce au plus tard le 6 décembre 2013.  Si vous souhaitez obtenir un autre format accessible, veuillez nous en informer afin que nous puissions satisfaire vos besoins en matière de mesures d’adaptation et d’inclusion.

Une fois que vous aurez soumis le questionnaire, nous communiquerons avec vous afin de fixer une date et une heure pour la téléconférence. Cette dernière se tiendra en décembre 2013 ou en janvier 2014. Si vous avez des questions, veuillez communiquer avec Terri Champagne.

Nous vous remercions de votre attention.

Veuillez agréer l’expression de mes sentiments les meilleurs.

 

**********************************************************************************************************************************

Good day,

On behalf of the Social Development Partnerships Program - Disability Component (SDPP-D) in Employment and Social Development Canada (ESDC) I would like to invite you to an engagement process to inform the development of parameters for a nationally focussed funding stream. The process consists of two stages: the first involves the completion of the attached questionnaire; the second involves a teleconference where the issues brought up in the questionnaire will be further discussed. Your input will help the program make decisions concerning applicant eligibility, possible funding models and the parameters for future competitive processes. For a brief overview of SDPP-D, please see the attached backgrounder.

Please find attached for a Microsoft Word version of the questionnaire to be returned to Terri Champagne ( This e-mail address is being protected from spambots. You need JavaScript enabled to view it ) by December 6, 2013. Please let us know should you require another accessible format so that we may meet your accommodation and inclusion needs.

Once you have submitted the questionnaire we will be in touch to arrange a time for the teleconference, which will take place either in December 2013 or January 2014.  Please contact us should you have any questions

Thank you for your attention. We look forward to receiving your input.

 

Etienne-René Massie 
Directeur, Direction des programmes | Director, Programs Division
Bureau de la condition des personnes handicapées | Office for Disability Issues
Emploi et Développement social Canada | Employment and Social Development Canada 
Tel.: 819.624.7669            Veuillez prendre note des nouveaux numéros de téléphone
Fax: 819.624.7686            Please take note of the new phone numbers

This e-mail address is being protected from spambots. You need JavaScript enabled to view it

Background_document

Consultative_Questions_English

Questionnaire_francais

Document d’information