FASD Committee of agencies organized in 1996
History of a Network
NWR FASD Society-Mackenzie Network
The High Level FASD Committee was established in 1997 by local community members hoping to create awareness and to educate surrounding communities about FASD. They volunteered their time because they struggled to get funding and grants. The committee created awareness by getting the community involved in projects, like the FASD “knot”, handing out bookmarks, quilting a blanket. The vision the FASD Committee had was to provide for the Mackenzie Region, along with FASD awareness and education, a Rural FASD Diagnostic service.
In the spring of 2002 the committee was approved for funding for a conference. Becoming a non-profit registered charity was the route chosen by the committee. In May 2003, the Northwest Regional Fetal Alcohol Spectrum Disorder Society became a legal entity and the voice in the north for caregivers and individuals around FASD. Now plans for training the diagnostic team began. The training was done by the Lakeland Centre for FASD using the Seattle model of diagnostics. Collaboration with the surrounding communities, children’s services, education and health began in earnest. Once funding was established and training was completed, the NWR FASD Society held its first Diagnostic clinic in the spring of 2003 under the coordination of Colleen Burns. Clinics continued until 2006, when funding became increasing difficult to get.
In the fall of 2006, the Society began advocating for either CFSA or Health to take responsibility for the FASD Diagnostic Clinics in the Mackenzie Region. The Northwestern Health Region CEO, Bernie Blais, agreed to fund the coordination of the FASD clinic within the High Level hospital.
Overcoming obstacles such as changes in health region, changes in coordinators, and funding clarification the Northwestern Primary Care Network began FASD clinics in earnest in the spring of 2009. Collaboration with the NWR FASD Society-Mackenzie Network and the NW Primary Care Network resulted in Youth FASD clinics once again being offered in the Mackenzie Region.
The FASD coordinator position was funded under Mental Health, but the clinic was run under the umbrellas of the PCN Youth and Complex Needs Coordinator, with funding for the pediatrician and neuropsych covered by the FASD Society with FASD Network, education and CYS funding. The Speech assessment was covered through the hospital. Collaboration among stakeholders in the Mackenzie region proved to be at the heart of the success of the PCN FASD clinics.
In the fall of 2010, AHS Mental Health withdrew the coordinator funding and position. Again through collaboration and advocating, the Northwest Primary Care Network once again stepped forward and agreed to fund the FASD youth clinics to a maximum of 24 until March of 2012.
In 2011 the Northwest Primary Care Network continued to fund the FASD Diagnostic Youth Clinic, with clinic coordination for the last 7 months being done by the NWR FASD Society - Mackenzie Network until a clinic coordinator can be hired. The SLP and OT assessments are covered by AHS. The local Diagnostic Team consists of pediatrician, neuropsych, SLP, OT, CFSA, Fort Vermilion School Division, NWR FASD Society, justice and support from the NW Primary Care Network.
Initially in 2002, along with clinic work, the NWR FASD Society developed a local library, and provided education and awareness about Fetal Alcohol Spectrum Disorder to various agencies and communities. In 2002 the Society hosted a FASD Conference, in 2005 they held workshops and in 2007 another conference was held. The local Parent Support Group became active and attempted to reach out to all caregivers with children with disabilities.
By 2005, the society recognized that the continuum of care needed, once the diagnosis was completed, was becoming a concern. There were no supports or programming in place for the caregivers or the individuals. Not only were agencies in the area uninformed of the complexity of the disability, but even when some understanding was there, there was no mechanism to provide the appropriate supports.
In 2006 - 2007, talk about the lack of agency involvement in the Society, led to the decision to do a needs assessment in the area and work at developing a mechanism to meet with the various agency stakeholders specifically around the continuum of care services in the area begn. Other than caregivers, the society had involvement from probation and the school division.
In the spring of 2007, the needs assessment was done in the region. There was a 50% return rate of the assessment. A “wish list” was developed by the parents support group of services they would like to see in the region. This information would guide the work of the FASD Society.
After successfully having the hospital take over the clinic, work focused more on the conference being planned in 2007. It was also around the time of the conference, that the Alberta FASD CMC Initiatives Funding was announced.
The hope of the Society at the time was that the funding announced would provide the society an opportunity to develop programming in the area for FASD. High Level and area was included as the northern part of the NW FASD Network centered in Grande Prairie. The Society president and the Primary Care Network Director became our regions voice on the NW FASD Network Leadership Team in the fall of 2007.
In the spring of 2008 the Alberta FASD Cross-Ministry Committee expanded the number of provincial networks from seven to twelve. The NWR FASD Society was asked if the Mackenzie area would be interested in being a separate Network. The Society felt that it would be a positive move for the area. In August of 2008 the Mackenzie Network came into existence with a start up.. In January of 2009, the Mackenzie Network Leadership Team began to look at developing new programming for the area.
In February of 2009, due to the confusion about the Mackenzie Regional Network of agencies and the Northwest Regional FASD Society, the two entities amalgamated under the legal entity of the Northwest Regional Fetal Alcohol Spectrum Disorder Society also known as NWR FASD Society-Mackenzie Network. The same people were working with both, and because the society was already established and entrenched in the region, the decision was made to remain as a legal entity within the NWR FASD Society, with the work being guided by the Society. The Society continued under its bylaws and has developed other guidelines with direction from the Provincial FASD Network Coordinator.
On April 1, 2009 the Society moved into its own office space, creating a physical presence in the community of High Level. There were 2 workers. By the fall of 2009, with 5 FTE, the PCAP Program and the Family Coach Program had clients, with the Youth Mentoring Program under development. By April 1, 2010 the Society moved into a larger office which in June of 2011 had 5.5 FTE workers, 9 FTE workers by 2013 and 8 youth mentors, 20 FTE and 9 youth mentors by June of 2015 and as of June of 2016 we have a staff of 31 FTE and 9 parttime and 2 casual.
The growth in staff, clients and programming between 2009 to 2016, highlights the need for supports and services for individuals and families impacted with FASD. In the Our Work section, the current programs being offered can be viewed.
Staff travel to all the communities in the Mackenzie Region providing services around awareness and education as well as front line programming and supports for individuals and families impacted with FASD. The programs offered through the society are:
- Parent Child Assistant Program (PCAP)
- FASD Life Coach
- FASD Family Coach
- FASD Youth Coach
- FASD Youth Transition Coach
- Prevention Conversation
- Diagnostic Clinics for Youth and Adults
- Mackenzie Housing Project Pilot (Supported Housing for adults impacted with FASD) May 2016
The NWR FASD Society-Mackenzie Network has satelitte offices in Fox Lake, Fort Vermilion and Chateh and through the Metis Network contract, offices in Gift Lake, East Prairie, Peavine and Paddle Prairie Metis Settlements.
With continued support from the Alberta government and the Alberta FASD Cross Ministry Committee, the NWR FASD Society-Mackenzie Network continues to develop, research and advocate for appropriate programming and supports for individuals and families. There continues to be gaps in services, and few identified "Best Practice" programs for those impacted with FASD. The NWR FASD Society-Mackenzie Network recognizes the complex needs of individuals impacted with FASD and the importance of providing supports to help them find "success" in their lives.
The Family Coach Program has evolved to providing support groups within communities, monthly newsletters, advocacy support, crisis phone support and home visits when necessary.
The Adult clinic coordinator has been working on collaboration with local and regional bodies including North Peace Tribal Council CFS, provincial CFS, medical centres, nursing stations, PDD, AISH and our local probation office to ensure that individuals accessing the diagnostic process are supported in a timely fashion. The collaboration with all agencies has proved very helpful in gathering data for the coordinators’ reports. She has streamlined the adult clinic and post clinic supports and is ensuring that recommendations are followed by those involved with the individual and family. The Clinic Coordinator has been developing a streamlined system to identify risks, need and ensure a pathway for needed documentation is created. Funds to continue to provide and increase Adult clinics must be obtained as the wait-list of 126 individuals gives a wait-list of 31.5 years.
The Youth Diagnostic Clinic has been operated by the NW Primary Care Network since its inception in 2006-07. As of April 2017 the NWR FASD Society will be responsible for clinic costs which include doctor and psychologist. The NWR FASD Society will continue to work with local agencies and communities to ensure the continuation of one of the longest operating diagnostic clinics in the province. The clinic process has, in the past, supported families to access and receive appropriate school and community accommodations and modifications for their child or adult. Continued access to Youth and Adult Diagnostic Clinics in the Mackenzie region is absolutely essential to ensure timely access to appropriate supports and services.
The Housing project has proven to be of interest to various groups within Canada and Alberta. Again the supported living residence is providing our agency with an opportunity to inform practice for persons with FASD beyond our Network Catchment area. Continued advocacy and planning to ensure that the Supported Housing model for individuals with FASD moves to the next level with an apartment building with NWR FASD services on the main floor. The NWR FASD Society as well as the whole Mackenzie Region will need to continue to bring the importance of supported living requirements to all levels of government to ensure our voices and the voices of families and individuals living with FASD are heard and this need addressed.
This year saw the introduction of the Provincial Adolescent “Lets Get Real” Campaign that will be bringing in the message of the importance of abstaining from alcohol when planning or during pregnancy. In cooperation with communities, schools, administrators and divisions, students from grades 7-12 will receive consistent messaging and information about the risks of alcohol use during pregnancy and begin the knowledge base for youth to have the conversation about alcohol and pregnancy with family, friends and acquaintances.
There is still work to be done with the schools and parents to ensure support for this new awareness campaign.