Last week was an incredibly busy and rewarding week for Trem and I. I do a lot of joking that 'I can't believe I came home from Mexico for this!' in terms of the cold and the snow we have, but in terms of presenting our story it was amazing!
I had been quite relaxed enjoying our break from the winter weather when I received a couple of emails in early January. One was from the ED of Innovative Life Options, Patti Chiappetta, wondering if I might be home by March 1 for the 3rd annual Family Conference that they were hosting in Winnipeg. The other came from the librarian at Austin Elementary School, wondering if I'd be around for 'I love to Read' month. I decided that both were worth returning to the frozen north for, because my heart and my passion still are very aligned with 'Just my Friend' and the work we need to continue to do for people who experience disabilities. So home we came!
I had been quite relaxed enjoying our break from the winter weather when I received a couple of emails in early January. One was from the ED of Innovative Life Options, Patti Chiappetta, wondering if I might be home by March 1 for the 3rd annual Family Conference that they were hosting in Winnipeg. The other came from the librarian at Austin Elementary School, wondering if I'd be around for 'I love to Read' month. I decided that both were worth returning to the frozen north for, because my heart and my passion still are very aligned with 'Just my Friend' and the work we need to continue to do for people who experience disabilities. So home we came!
I worked for LIFE for over 13 years, and the Family Conference was a result of a project I'd been part of starting in 2013. One of our favorite local 'disability gurus', Bob Jones, had approached LIFE about doing something that was more innovative, and the result was what we'd called 'Kitchen Table Conversations'. They were small gatherings of three or four family members in various corners of the province of Manitoba to talk about where things were at for their loved ones, what was going well, what could be built upon...what were the dreams. It was incredible, heart touching work that touched me deeply.
The project resulted in a couple of things. One was the book ‘Family Matters’ that I wrote in collaboration with LIFE and the ICOF (In the Company of Friends) families that were willing to share their stories. The other spin off was the Family Gathering Conference, now in it’s third year.
I made myself available to sit in on most of the conference happenings, all of which were great. Trem and I were lucky enough to get a morning session to talk about our experience in connection and relationship development, which was an awesome experience and well received by attendees.
The project resulted in a couple of things. One was the book ‘Family Matters’ that I wrote in collaboration with LIFE and the ICOF (In the Company of Friends) families that were willing to share their stories. The other spin off was the Family Gathering Conference, now in it’s third year.
I made myself available to sit in on most of the conference happenings, all of which were great. Trem and I were lucky enough to get a morning session to talk about our experience in connection and relationship development, which was an awesome experience and well received by attendees.
Trem Cleaver and Lynda Dobbin-Turner at the Family Gathering Conference
What I was most excited about over the course of the event was to learn about FAN, which is the Family Advocacy Network of Manitoba. FAN is a grassroots collaboration of families for families of people who live with various disabilities. It has been created with the understanding that it’s other families who best know the needs and experiences of others in the province, with the goal of easing and supporting each other’s journeys. They are a group of individuals who recognize that change best happens when we work together and share our voices to promote the change and opportunities that our loved ones with disabilities deserve and require to have the best life possible. I’m excited to see the passion behind this fairly new initiative, and look forward to supporting it’s growth in the province in the years ahead.
Having sat in on their presentation, I asked if they’d be kind enough to share their story with me, so that I could share it with you…and of course they were. So, below is the history and opportunities that are available now because of the newly formed Family Advocacy Network of Manitoba. Please take a few minutes to learn more, because if you have a family member with a disability, or if you know of another family as with everything else, there is strength in numbers. It is the love of family that has created some of the most incredible changes in so many aspects of history, and it is the love of family that will keep moving the world of disabilities forward into a more supported, accepted and celebrated place. I love the use of the world ‘navigators’ because as Rumi said, “we are all just walking each other home”. If what you or I have learned with ease the journey of another towards having a better life experience, then lets band together and use those skills as best we can.
Having sat in on their presentation, I asked if they’d be kind enough to share their story with me, so that I could share it with you…and of course they were. So, below is the history and opportunities that are available now because of the newly formed Family Advocacy Network of Manitoba. Please take a few minutes to learn more, because if you have a family member with a disability, or if you know of another family as with everything else, there is strength in numbers. It is the love of family that has created some of the most incredible changes in so many aspects of history, and it is the love of family that will keep moving the world of disabilities forward into a more supported, accepted and celebrated place. I love the use of the world ‘navigators’ because as Rumi said, “we are all just walking each other home”. If what you or I have learned with ease the journey of another towards having a better life experience, then lets band together and use those skills as best we can.
As parents of children with a disability we have commonalities…...the advocating never ends… as there is always a new stage in life and another hurdle to cross. There is advocating for therapies, with medical professionals, with the school system, transitioning from high school, supported employment, supported housing, respite… . And a humongous commonality is that we advocate as lone rangers… us against the world… issue after issue…. And with authorities that don’t seem to get it.
We fumble our way through and often only learn about resources during connections with each other. There is no manual for us and we often speak of how helpful it would be if we had a navigator to help us see our way…. A real person to guide us.
We hear comments about needing a place where families can connect to provide support, knowledge and share experiences with each other. A place where families can be heard, to be present and to be influential with the “powers that be” with decisions that are being made for the care and quality of life for our loved ones with a disability….. It is as a result of our experiences and journey in our world of supporting children with disabilities that the Family Advocacy of MB has come to be. Rather than feeling like lonely islands in the sea we want to band together to become one big island. We believe there is strength in numbers.
Over the years the need for a family advocacy network was a desire. Through the Inclusion Winnipeg Advocacy Committee meetings this passion grew and in the fall of 2017 we began taking steps for creating a Family Advocacy Network. Around this period of time there was also an interest with several other organizations on Family Engagement where we were able to share our desire for a network and collected names of other parents that were interested in participating.
On March 3rd 2018, we held our first meeting of the Family Advocacy Network. There were 33 families present. We asked the families the following questions:
On May 5th at our second FAN meeting we took what we heard from March 3rd, asked the families to prioritize several topics and held in depth discussions in smaller groups. In closing we agreed that we needed to continue this work to collaborate with each other and to promote change…The persons present in the May 2018 meeting narrowed down the long list of issues that were most relevant to the families and small networks are forming based on areas of interest and/or concern…. Some of which include: 1)Transitioning to Adulthood and Supportive Housing 2) Development of a website 3) Quality of Care in Community Homes and 4) Wages/Training/Education for direct support workers
Just as the butterfly we are evolving and transforming. In the Fall … the cocoon stage. By spring we grew our legs…and in Mid May we gained our wings. We chose our name… Family Advocacy Network of MB or (F.A.N) for short. We have 181 registered members. We want to grow and are ready to spread the word more widely throughout the city and the province. We are asking each and every one of you for your continued participation whether it be through sharing your concerns via emails/letters or by getting involved in an action group. We have our wings but our destination is far reaching. We need you to become involved and to spread the word as we have many destinations that we want to visit along our way to our final destination which is ….. a system that will allow us parents peace of mind. A system where people with disabilities are being adequately supported by the system while being surrounded by a network of caring friends and family and they can feel empowered to live good lives as part of the community.
The following are some actions that have been initiated by the FAN to date:
Our hopes for the Family Advocacy Network….is
For more information, or to get un the FAN mailing list, please send an email to [email protected]
We fumble our way through and often only learn about resources during connections with each other. There is no manual for us and we often speak of how helpful it would be if we had a navigator to help us see our way…. A real person to guide us.
We hear comments about needing a place where families can connect to provide support, knowledge and share experiences with each other. A place where families can be heard, to be present and to be influential with the “powers that be” with decisions that are being made for the care and quality of life for our loved ones with a disability….. It is as a result of our experiences and journey in our world of supporting children with disabilities that the Family Advocacy of MB has come to be. Rather than feeling like lonely islands in the sea we want to band together to become one big island. We believe there is strength in numbers.
Over the years the need for a family advocacy network was a desire. Through the Inclusion Winnipeg Advocacy Committee meetings this passion grew and in the fall of 2017 we began taking steps for creating a Family Advocacy Network. Around this period of time there was also an interest with several other organizations on Family Engagement where we were able to share our desire for a network and collected names of other parents that were interested in participating.
On March 3rd 2018, we held our first meeting of the Family Advocacy Network. There were 33 families present. We asked the families the following questions:
- What is working well for you?
- What resources have been helpful?
- What roadblocks have there been for you?
- What is the most concerning thing about the future?
- What would you like to see changed?
On May 5th at our second FAN meeting we took what we heard from March 3rd, asked the families to prioritize several topics and held in depth discussions in smaller groups. In closing we agreed that we needed to continue this work to collaborate with each other and to promote change…The persons present in the May 2018 meeting narrowed down the long list of issues that were most relevant to the families and small networks are forming based on areas of interest and/or concern…. Some of which include: 1)Transitioning to Adulthood and Supportive Housing 2) Development of a website 3) Quality of Care in Community Homes and 4) Wages/Training/Education for direct support workers
Just as the butterfly we are evolving and transforming. In the Fall … the cocoon stage. By spring we grew our legs…and in Mid May we gained our wings. We chose our name… Family Advocacy Network of MB or (F.A.N) for short. We have 181 registered members. We want to grow and are ready to spread the word more widely throughout the city and the province. We are asking each and every one of you for your continued participation whether it be through sharing your concerns via emails/letters or by getting involved in an action group. We have our wings but our destination is far reaching. We need you to become involved and to spread the word as we have many destinations that we want to visit along our way to our final destination which is ….. a system that will allow us parents peace of mind. A system where people with disabilities are being adequately supported by the system while being surrounded by a network of caring friends and family and they can feel empowered to live good lives as part of the community.
The following are some actions that have been initiated by the FAN to date:
- In May 2018 … we launched our Facebook Page
- In June 2018… FAN held a PATH where two facilitators drew out the group’s ideas on: Possible Future Dreams/Goals and the steps to be undertaken to move the dream forward.
- In July 2018 …Letters were sent to several ministers for the purpose of sharing our concerns... and collaborations have commenced
- We have created a small leaflet describing FAN and are working on developing a pamphlet and a website
- In September 2018 seven family members and 3 self advocates of the Fan Network met with Jay Rodgers, Deputy Minister of Families on the topic of Wages/Training/Education for Support Workers
- In Sept we emailed a one page letter to all the MLA’s in Manitoba and to the Premier’s office to introduce the Family Advocacy Network to them
- In early Oct CBC news featured us in an article in their news feed & in a radio show segment…. This media coverage increased our numbers on our Facebook page significantly
- In January 2019 five FAN families met with the Minister of Families, Heather Stefanson and her support team on the topic of Supported Housing and Independent Living
- We are creating several short videos. The focus is to create a series of videos that tell the story of families of people with disabilities living in MB and to promote the Family Advocacy Network. I am pleased to inform you that the first video in the series is ready and will be shown today.
Our hopes for the Family Advocacy Network….is
- A place where a person can reach out to, whether it be for information, someone to be by their side as a support when they are dealing with a difficult situation, or to offer a helping hand for navigating the system and locating necessary resources.
- An entity that will be welcomed to join the table with decision makers for collaborations surrounding needed supports and policies. Undoubtedly our lived experience would be an asset and have a positive influence for our family members with a disability and their families
- To see a different system come into being for our Manitoba families connected within the disabilities community. A system that will allow parents to have peace of mind knowing their children with disabilities will be safe and secure now and for the rest of their lives.
For more information, or to get un the FAN mailing list, please send an email to [email protected]
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