Saturday, 16 September 2017

Young Lady impacted by FASD in her element

My daughter and I spent this beautiful Saturday afternoon playing with her horses.  We created a video that has been added to her portfolio and thought you might enjoy seeing it.

Sky and Clipper doing Team Building

MCYS Initiative #1 One-Stop Hubs: What Does It Mean?

If you haven't seen the latest MCYS announcement regarding FASD, be sure and go to  However, I have also been making weekly phone calls to Jacqueline Hamelin, MPP Kiwala's Executive Assistant to get clarification on how they are rolling out the 6 step, 26 million initiative announced in the last budget and received a reply yesterday.
The first factor that stands out is the MCYS is separating the six initiatives as independent of each other.  They have also prioritized the six initiatives with the one stop internet hubs as number one, establishment of parent support groups as number two and research projects as number three.  The remaining three initiatives are being rolled out later including the Key Worker.  
The second factor is the fact they are accepting letters of expressions as the first step.  This means any organization/ NOT INDIVIDUALS can write a one page letter stating their desire to be considered for that particular initiative.  They will then send an organization the application form where the organization will state their objectives and how they will be implementing them.  
This has huge impact on how our FASD network and groups need to proceed.  The LLG FASD Work Group is currently establishing their communication policy and putting the final touches on their Internet hub.  We will then be taking that information to a third party webmaster and encouraging them to write the letter of expression using the information the LLG FASD Workgroup gives them.  
As a former teacher of high school media studies, I would like to pass along my vision of what this one stop hub should look like.  The website needs to have a Facebook page and Twitter account associated with it.  The website will have a home page, a mission page, an events page focusing on conferences and support group meetings, a community partners page including how to contact the Key Worker and community services, a resource page, a sharing page where people impacted by FASD can submit blogs, stories or videos and a contact page.  This website needs to be designed to read which device is opening the site because it will look different on a laptop versus tablet versus phone.  It is more of a static site to provide information which is why the Facebook and Twitter is important.  They allow interaction and will reach a larger public audience than a static website.  The best part of Facebook is once the account is setup, parent support groups or any other organization can live stream through their page any guest speaker or presentation and save it onto the site for future usage.  So the information isn't being presented to 50 people, it is going to 500 people.  Add in twitter feeds during the presentation and now you are getting 1000 people who will watch that presentation.  And you can download that Facebook link into a movie editor and upload it into a Youtube video to get an even larger audience.  To accomplish this, you need a smartphone or tablet with a $50 tripod stand to hold it and start recording.  Any professional webmaster can set all of this up in an hour.  If I was to ranked the current FASD websites right now, I really like the Halton FASD one.  The Niagara FASD Coalition and Chatham FASD sites also have the required elements but are in need of additional resources and funding.
What organizations need to be aware of, though, anyone can do this.  Any individual with the technical know-how can easily create a one-stop hub.  You register with the CRA as a publishing company, set up your ISBN account, partner up with a person in the FASD community and away you go.  And they will be controlling the message with no supervision as to what information is being disseminated.  
Our FASD community needs to be proactive like the LLG FASD WorkGroup and be involved in the application process for these one stop hubs.  Find a local webmaster organization and get them to write that letter of expression on your behalf.  I would include in the terms of agreement that they have to hire a local adult directly impacted by FASD as a consultant in site development and maintenance with input from the local FASD network.

My next blog will be on initiative number two - augmenting and supporting parent support groups.

MCYS announcement Parent Support Groups and Research

If you haven't seen the latest MCYS announcement regarding FASD, be sure and go to  However, I have also been making weekly phone calls to Jacqueline Hamelin, MPP Kiwala's Executive Assistant to get clarification on how they are rolling out the 6 step, 26 million initiative announced in the last budget and received a reply yesterday.

In my last post, we looked at the One-Stop Hub initiative and its impact.  In this post, we will look at initiative number two and number three: a program to augment the number of family/caregiver support networks and assist those already in existence; and a FASD research fund to learn more about FASD, and how to prevent it.

Again, the announcement states organizations will be invited to submit an expression of interest to request funding to develop a program which augments family/caregiver support networks and assist those in existence.  It is interesting they have separated this initiative from all others.  The Key Worker which we will look at later is not part of this funding.  Websites are not part of this funding.  Research is not part of this funding.  This money is devoted exclusively to parent support networks.  Augment means add or increase.  So they are likely looking for organizations which can receive provincial monies to create new parent support groups within this new program and assist those already in existence.  The LLG FASD Work Group would love to start a parent support group but currently needs funding for a location, child care and possibly guest speakers.  This announcement is extremely exciting and will allow us to get started.  However, it also means if there is a pocket of people anywhere in the province who want to start a FASD Parent Support Group, you only need to approach one of these organizations receiving this funding and get it started.  
It is due to our involvement in our local FASD network that we have learned about FASD and how we and our children can manage it.  I have said before and will state again it is our local pioneers from the last generation of people impacted by FASD that we know anything at all.  They had no support but still wanted to pass their experiences along to benefit us.  We are in a much better place today on their backs.  We need to continue building on this momentum and that leads to research.
I consider the third initiative of research funding to directly impact us as well.  While we will not be the organization applying for this funding, we need to be encouraging those individuals to do so.  In turn, they will need people impacted by FASD to be available for research purposes.  In an earlier post, I stated my wife and I are working with the Strongest Families Advisory Committee for a research project.  It is a very minor commitment of participating in a couple Skype sessions, and then give feedback on a website.  However, it will have a large impact on families impacted by FASD.  Seek out those opportunities and don't be afraid to give your opinion.  If you are like us, it is hard to believe that we are experts, but we truly are.  It doesn't take long to have a conversation with someone not impacted by FASD to realize we really do have a lot to share.
In the last post, we will look at the fourth initiative of the Key Worker.

MCYS announcement - Key Worker

If you haven't seen the latest MCYS announcement regarding FASD, be sure and go to  However, I have also been making weekly phone calls to Jacqueline Hamelin, MPP Kiwala's Executive Assistant to get clarification on how they are rolling out the 6 step, 26 million initiative announced in the last budget and received a reply yesterday.

Within the reply, MPP Kiwala's office also answered my direct inquiry of the Worker proposal.  It is not clear at this point if they will be using the same method of inviting expressions of interest from organizations to provide a Worker who focuses on system navigation for those directly impacted by FASD under the age of 18.  They have targeted 50 regions who will receive one Worker each.  I also know they have also completed their fifth initiative of establishing a consultation group for planning and prioritization.  It is this consultation group who are establishing the role of the worker with an emphasis on system navigation with current service providers.  It also appears this group will be instrumental in determining the recruitment and allocation of these workers.  The LLG FASD Work Group is planning on submitting a proposal on how that Worker will be allocated and recruited in our local area.  It is important to note MCYS is only providing the worker for children and youth.  Clearly, this is an area that will need to change going forward.  FASD is a permanent, lifetime disability and so the individual directly impacted by FASD needs lifetime support.
Finally, I also know MPP Kiwala is not finished.  She has been given the opportunity to present a motion to the floor of Queen's Park.  As a parliamentary assistant within the Ministry of Children and Youth Services, this is highly unusual and a reflection of how effective she has become as our advocate.  Her motion is currently under discussion within the Premier's office and if she receives assent, it is highly likely the motion will pass.  She recognizes FASD is beyond the Ministry of Children and Youth Services and so she is endeavoring to make it a provincial wide issue in other relevant ministries.  Stay tuned to when the motion will be read.  She has asked that once we get that date, we turn out en masse at the Queen's Park gallery to show our support.
I was initially concerned on how quickly the 26 million for four years would get used up, but it appears MCYS is doing a good job ensuring all initiatives will have the necessary funding to get started.  Obviously, funding will need to continue to increase but at least it gives us a start.