LLG FASD Work Group partners with Citizen Advocacy FARP

The LLG FASD Work Group has invited the Citizen Advocacy FARP to join them in creating the implementation proposal to be submitted to Queen's Park and Citizen Advocacy has accepted.  Based on MPP Hillier and Clark advice, we are looking at a service provider for Lanark, Leeds and Grenville who can receive provincial monies and has an existing FASD program.  With Citizen Advocacy's experience and expertise, they will make a wonderful partner in helping write the proposal for our rural area.

The main areas of focus is having a Key Worker to serve as a system navigator for individuals and caregivers impacted by FASD, a parent support group, marketing, and training.

While we are currently trying to determine when Queen's Park needs this proposal, we believe August 24 is the deadline and working accordingly.

MPP Hillier advocating for Lanark Leeds Grenville at Queen's Park

The following letter was sent by MPP Hillier to MPP Kiwala as result of the LLG FASD Work Group meeting with MPP Clark and Hillier.  We are keeping the irons to the fire and hopefully we will get the money to the individuals who are being directly impacted by FASD.

MPP Hillier letter

FASD Interview on Lake 88

Lake 88 recently had the Lanark Leeds Grenville FASD Work Group come in studio and talk about what FASD is and what we are trying to do locally.  As a result, the LLG Foster Parent Association and Connections have representatives joining us now.

To hear the interview, go to Lake 88 interview

FASD Implementation proposal for LLG to Sophie Kiwala, MPP, Steve Clark, MPP, Randy Hillier, MPP

Lanark, Leeds and Grenville

                                                                                                                                            June 5, 2017

Dear Mr. Clark, MPP and Mr. Hillier, MPP,

               Thank you very much for taking the time in your busy schedules to meet and speak with us on Friday, June 2.  We were greatly encouraged by the types of questions you asked as it is apparent both of you appreciate the impact FASD is having on your ridings.

To recap what we discussed, Mrs. Greer shared with you that we fully agree with the key findings of MPP Granville Anderson’s report.  Education to eliminate the stigma around FASD, lifetime tailor-made services, increased early screening, a joint strategy focusing on health, justice, education, and social services and finally a Key Worker program devoted to FASD are all needed in Lanark, Leeds and Grenville.  Ms. Bertrand, our chair, shared with you what she is seeing from the perspective of a service provider.  As a Manager of Leeds and Grenville Developmental Services Crisis Centre, she has consistently seen clients impacted by FASD turned away because while they do meet the adaptive skill pillar, they are consistently above the 2% intelligence pillar.  Thus, they get sent to assorted agencies depending on their current need, and they are left to try and navigate the system themselves.  Finally, Mrs. More, parent of three children impacted by FASD, shared with you the challenges her family have dealt with over the past ten years.  Her story of how she went through a psychologist, a psychiatrist, a pediatrician, a general practioner and finally the genetics department out of CHEO while her daughter was in crisis for 16 months before getting the diagnosis is a typical story.  Her other two children are still waiting for the diagnosis simply because they are not currently in crisis.  Mrs. Greer sharing how it was due to her son being incarcerated before getting the diagnosis is another example of how difficult it is to get a diagnosis.

We recognize the budgeted 26 million dollars for the province will get used up quickly.  For Lanark, Leeds and Grenville, we are requesting funding in the following areas: 

·        One full time FASD Key Worker for Lanark, Leeds and Grenville to support parents with system navigation, guidance and act as a key liaison/advocate for families who are impacted by FASD whether they have an official diagnosis or not,

·        Monies to provide FASD education to service providers including educators, justice services, social services, and health care providers,

·        Monies to support an FASD Parent/Caregiver Support Group modelled after the South-East Kingston Parent Action Group that provides monthly parent meetings for support, guidance, guest speakers and child care services for their children.  In addition, we would like monies to market this newly formed group throughout Lanark, Leeds and Grenville.

As mentioned at our meeting, we are currently exploring the possibilities of establishing a partnership with Citizen Advocacy Ottawa and their Fetal Alcohol Resource Program to be the organization that would receive funding on our behalf.  They have been doing amazing work in all the above areas, and their staff are well versed in the BC Key Worker program, Strength Based Approach to FASD and Diagnostic Services required to support families affected by FASD.  We were informed today that 1/3 of their requests for supports comes from our county. However, due to their funding model, they are currently unable to provide services to this area.  They will be attending our meeting on June 7, 2017 to move this conversation forward.

In addition, we would like to express the importance of having a rural voice on the proposed consultation group that has been outlined in the FASD Strategy announcement and would love for one of our members to be that voice.

Our discussions also highlighted the importance of having an Integrated Ontario FASD Strategy as outlined by Durham MPP Granville Anderson’s report. Although we appreciate that the Ministry of Children and Youth Services has taken this first step, there are still key issues that will need to be addressed at some point such as:

·        Currently, the Ministry of Education has no designation for FASD which is a Brain-Based physical disability.  The lack of designation makes this invisible disability challenging for parents and caregivers. Parents are continually relying on the co-operation of their local school board or in some cases their local school to get the supports they need for their children and often are met with resistance or lack of understanding.

·        Our Region does not have a multi-disciplinary approach for FASD diagnosis.  CHEO and Hotel Dieu are the main sources for diagnosis, but the wait lists are very long delaying a timely diagnosis, as indicated in our specific examples mentioned today.  Starting this process should come from an entry point into service and educational support and not because of crisis.

·        You heard from Development Services the majority of individuals identified with FASD who come through the crisis centre cannot get the supports through this organization as they do not meet the IQ eligibility requirement of under 2%.  This needs to change as these individuals cannot function independently in daily life.  They need the resources and the “External Brain” that Development Services can provide to live productive and contributing lives.

In conclusion, the LLG FASD WorkGroup will be forming a subcommittee at our upcoming meeting to develop implementation strategies and determine the specific financial dollars required to support the above requests.  Our counties have demonstrated a shared concern and collaborative approach on how to best serve those impacted by FASD.  Our network continues to grow and so we now have the fortitude, determination and the desire to work collaboratively with all stakeholders to have a positive, long lasting impact to reduce prevalence of the disorder, increase coordination of services, improve quality of life for those affected with FASD, and enhance supports for families and caregivers.

We appreciated the opportunity to have such a positive conversation with you and we look forward to continuing work with you.  We also appreciate your offer to help bring to our group representation from the Lanark, Leeds and Grenville Family Services.  Knowing that we have informed advocates at Queen’s Park is a great comfort to us and one that will have a very positive impact on our local FASD community.

Sincerely,

LLG FASD WorkGroup

FASD- Physical Disability at CDSBEO IPRC

My wife and I recently had the opportunity to attend the Catholic District School Board of Eastern Ontario SEAC meeting on May 24.  We had been invited to sit as a delegation for FASD at this meeting by chair and trustee Sue Wilson.  We were on the agenda to be nominated as the FASD reps on behalf of the LLG FASD Working Group.
In attendance at the SEAC meeting with Ms. Wilson were representatives of ten support organizations including VOICE, Community Living, Best Buddies, ABC, Easter Seals, and others.  The Superintendent of Special Education, Dr. Hawes, the Principal of Special Education, Ms. Perrault and other Board reps were also present.
Within the discussion of the Special Education Report draft for next year, the question was raised involving IPRC's and IEP's.  The report stated if a student meets the criteria for identification, they are to be identified and placed accordingly.  CDSBEO determines meeting criteria according to the seven Ministry of Education definitions for exceptionalities.  Dr. Hawes was asked if FASD meets one of those exceptionalities.  She stated that FASD is a physical disability and meets the criteria as such.  She went on to say, a student impacted by FASD may also meet the multiple exceptionality if there is a communication, intelligence, or behaviour component as well.  However, the primary exceptionality should be a physical disability.
As you are probably aware, IPRC's continue to be a huge battleground regarding FASD.  From school board to school board, procedures and understandings change.  It reminds me that ultimately there needs to be direction given by the Ministry of Education regarding how FASD is to be defined.  Just like Autism has its own definition under the Communication umbrella, FASD needs its own definition under the Physical Disability umbrella.
To have a Special Education Superintendent make this statement is a testimony to Dr. Hawes and the Catholic District School Board of Eastern Ontario.  She is to be commended for taking the lead on this and establishing the model others should be following.