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| 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
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