FASD: The Life-saving Benefit of Social Services

In our last blog on the 23 initiatives, we will look at the current status of social support for people with FASD in the province of Ontario.  As seen by the Ontario roundtable report on FASD, the key elements to success already exist.  They just need to be more purposeful with a clear vision and strategy.  With a clear overarching FASD strategy, general knowledge within our province, regular conversations among all parties and eligibility for all necessary supports, the province of Ontario could easily lead the way in creating an inclusive, compassionate and accessible society for everyone.

The Rural FASD Support Network sees its niche as being the people with lived experience that gets the conversations started.  We know we need the help of the Ontario Legislative Assembly to be the one that creates the clear overarching strategy among all ministries and all ridings similar to the one proposed in the U.S. Congress and the province of Alberta.  Expert knowledge comes from our training partners like Citizen Advocacy, Kids Brain Health Network, and CanFASD.  The Rural FASD Support Network and other support groups with their media partners create the regular conversations.  Finally, the positive models of support with access to existing services come from our service partners.  The province of Alberta conducted an evaluation of the effectiveness of their strategy after just seven years and discovered they saved $97,000 per person with their program.  When you consider supporting people with FASD will bring positive outcomes such as less health needs, higher employment rates, larger tax base, greater contributions to our society and less policing and justice requirements, it only makes sense.  

As stated before, successful outcomes for people with FASD happen when they have a community, purpose and support from all.  Within MCCSS, we are extremely thankful for the current support, but need access to other current supports, starting with Developmental Service eligibility.  MCCSS states there is a new definition for developmental disability which will be applied fairly and consistently.  However, FASD is rarely understood as a developmental disability and so the rejection rate for our adults with FASD is extremely high.  And because our Social Inclusion Act of 2008 states it is a privilege to receive services and not a right, we are finding this obstacle to literally be life-changing for adults with FASD and their caregivers.  With the elimination of the children to adult transition through the new MCCSS, the FASD support worker should also be eligible to continue working with their clients instead of having to stop at age 21.  However, we do recognize that would entail additional workers who would need to have adult support backgrounds. These proposals already exist within our Indigenous partners support system.  The Ontario Federation of Friendship Centres has completed their pilot project on their Nutrition program within four sites and has seen the benefit of the program after just three years.  What is important to note is eligibility only requires self-declaration and they receive health and mental health support, employment support, and access to a support group, education and a worker.

The Rural FASD Support Network Indigenous members are not able to access this program as well due to the fact it is only located in four urban locations.

For us, though, if there was one thing that could be done right now, it would be to renew Ontario’s membership with the Canadian FASD Research Network which has currently expired. Just like the Kids Brain Health Network, CanFASD is the key partner in our national strategy development, the main source of FASD online training for provinces, and watchdog of all FASD research within the world.  If an FASD champion at Queen’s Park wanted to make an immediate difference, we would ask you to contact Kathy Unsworth at kathy.unsworth@canfasd.ca to find out what CanFASD could do for Ontario.

In our final two blogs before we gather together on Feb 24, you will get to meet our youth with FASD who will be joining us on this momentous day.

FASD: How Housing leads to Employment

One of the biggest challenges our youth with FASD face is becoming productive and contributing members of our society as adults.  While school can be very challenging, it can provide structure and strategies for success when informed educators and medical personnel are working in collaboration.  During that transition into adulthood, though, the individual with FASD experiences huge changes to their routines and structure.  For an adult with FASD, we have seen when a community with housing and employment opportunities, positive outcomes can be achieved .  Amongst the seven adults with FASD within our membership, we have confirmed what the research says.  When someone with FASD has a stable home with external support and a steady occupation, positive outcomes can be achieved.  When one of these three elements are missing, life can become very challenging.

Just like any adult, most adults with FASD want to live somewhere else besides their parent’s home.  However, it must be an interdependent model as explained by CanFASD’s paper on housing and homelessness.  This model exists in various places including 360 Kids and Participation House in Markham.  It basically consists of having people with disabilities living in an open and inclusive community consisting of their service providers and other members of the public.   This is why the Rural FASD Support Network is supporting the endeavor that Cornerstone Landing and Redwood Homes are proposing in terms of a rural housing model.  Cornerstone Landing is proposing a tiny home village where homeless youth, seniors, members of the public, a community hall and an administrative office are all located together.  Within this village, a supporting municipality is key.  Current codes make this model impossible and require changes at the municipal level.  Having a gathering place for the residents which is ran by the municipality for insurance and maintenance purposes is also key for building the village into a community.  One of the big advantages a tiny home provides over an apartment is cost and sensory processing.  For someone with FASD, these are huge considerations.  Instead of having a huge lump sum cost at the beginning for all funding partners, it could be done in small increments.  However, there are challenges to this model based on current legislature.  This is why we have partnered with Yuergen Beck of Redwood Homes and Cornerstone Landing to lend an additional voice in exploring these challenges and finding solutions.  These challenges include no specific code related to tiny homes or any regulation related to how they are built. 

Having a home and supportive community is not enough.  In the three earlier examples, work opportunities are also provided.  Work provides that same self-esteem, structure and purpose that people with FASD crave.  However, our current system is creating obstacles.  There are limited incentives for employers to invest in hiring people with FASD.  As a result, it is not encouraged to even state the existence of FASD during the hiring process which leaves both the employer and individual at a disadvantage.  Finally, when you consider that someone with FASD has a 74% likelihood of being unemployed compared to the national average of 6%, we need to build a system that encourages hiring people with FASD rather than sending them to social assistance.  As our adults with FASD will tell you, they have unique strengths that can benefit our economy.  Within the adults of the Rural FASD Support Network, we have a baker, a horse trainer, a dishwasher, a tent installer, a homemaker, a musician, and a computer programmer.  However, we also have several unemployed individuals looking for work that is sustainable for them and youth who can’t get into college because of the theory requirements.  While hands-on work is a strength for them, the lack of apprenticeship opportunities removes that possibility.

In our pursuit of inclusivity within our society, when adults with FASD have support, structure and purpose, they too become valuable contributors to our society.  We are thrilled to have Yuergen Beck, Shelley More, Karen Huber, Cassie More, and Rick Graham come with us on Feb 24 and share their expertise.  If you have any questions, please feel free to contact us at ruralfasd@gmail.com.

FASD: Connecting Health and the Solicitor General

One of elements the Rural FASD Support Network has focused on is breaking down the silos that exist in our society.  It has been through this desire that we have seen the benefits of different organizations working together including our families, our service providers, our FASD workers and the ridings across this province.  Because our voting membership consists solely of those with FASD and their family members, we currently have the pleasure of serving in an advisory capacity in our local and national Mental Health, Policing, Education, Research, Housing, Employment, Support Services and Health sectors.  Through this advocacy, we would like to bring to your attention a link between the Ministry of Health/Mental Health and the Solicitor General which may not be well-known.

When mental health supports are lacking for those with FASD, adverse outcomes such as trouble with the law and incarceration become much more likely as our youth and families have discovered.  This is part of why we reached out to our policy leads at Citizen Advocacy and CanFASD to develop legislative suggestions for these particular ministries focusing on education and capacity building. 

The first thing we learned was there is not currently an OHIP code for diagnosing people with FASD which makes determining just how much impact FASD has on our province challenging.  However, we do know from specific studies that 3-5% of our population is a very realistic estimate.  The other challenge that comes from not having an OHIP code is it limits interest from our medical community in building diagnostic capacity.  In Alberta, British Columbia, and Manitoba, there is a diagnosing clinic for every 1.5 million adults.  In Ontario, that would require about 9 clinics to meet the population need.  There is progress being made in educating our medical personnel and correctional officers but it is limited to particular areas within the province.  Citizen Advocacy has developed a training model for these sectors and has delivered it to over 4,000 people within the province.  We have also heard from our mental health partners that there is a difference between childhood trauma and adult trauma.  Our current mental health models do well with short term support but children with FASD and/or have been adopted tend to require much longer support.  We also learned that mental health challenges is now considered to be a primary characteristic of FASD and not a secondary characteristic due to the very high prevalence among youth and adults with FASD.

While there is more emphasis being put on FASD training within our medical personnel in school, more education is needed with our current medical personnel.  This is why CanFASD created the series of videos with Dr. Hanlon-Dearman and Citizen Advocacy.   Our obstetricians and nurses serve as our frontline workers for FASD prevention and have a huge impact on future outcomes for these children.  At the same time, studies have shown our incarcerated population has a high prevalence for FASD.  When you consider that correction tends to use behaviour modification techniques which someone with FASD can’t understand, it is not surprising the prevalence is so high and further education on FASD is needed. 

In Lanark County policing, there has been an understanding for a while that mental health can impact behaviour.  Traditionally, the local police would take someone to the emergency ward if they were having a mental health crisis.  However, the follow-up that was needed was missing.  The Smith Falls Police made the decision to partner with Lanark County Mental Health for two purposes.  Their nurses provide mental health training to officers on when to call them and the officer will bring in the nurse to do an immediate intake on site.  The nurse will then provide the follow-up.  However, this partnership is based on a one year grant and needs further financial support.  When multiple partners collaborate, it is fabulous to see what can be achieved.  To learn more about this model and our partners, please speak to us on Feb 24 in Room 230 starting at 10am and we will be happy to introduce you to these service providers.  We will also have a special presentation starting at 1pm on this subject as well.  To request a private audience, please contact Rob at ruralfasd@gmail.com.

Panel Presentation on FASD: Linking Mental Health and Justice on Feb 24 at 1pm

In 2004, Dr. Streissguth et al released a ground-breaking study on FASD that shocked everyone.  Within this large sample group of 415 adults with FASD, it was discovered that 80% of these adults went through the foster care system and were extremely vulnerable to five primary adverse outcomes.  The study showed generally 50% of these adults experienced disrupted school experiences, trouble with law, confinement, inappropriate sexual behaviour, and addictions.  The study also showed, however, early intervention while they are a child will reduce those prevalence numbers of 50% to 12%.

The youth within the Rural FASD Support Network know first hand the legitimacy of this study.  Most of our youth have came through the foster care system, experienced all five adverse outcomes multiple times and have found their success through interventions and support.

CanFASD has also done multiple studies since 2004 on this subject of preventing these five adverse outcomes and just released its latest paper by Dr. Pei and others.

We understand there is a direct link between Health, Education, Justice and MCCSS as it applies to FASD.  The U.S. Congress in the House of Representatives have introduced a bill which passed the first two readings with support from both parties and has now gone to committee.  In their bill which states 5% of first graders in America have FASD, they have linked Health, Mental Health, Education, Justice and Social Services together.  

There are also four youth in our support group who have experienced firsthand how mental health and justice go together.  With FASD, life for a teenager can be very overwhelming at times.  In those situations, what we have seen is an overpowering desire to escape pain and not really understanding why.  Kim Barthel, Occupational Therapist and Counselor to Theo Fleury, former NHL player, has proven that traumatic events that happen to a infant will remain within their body’s memory.  When you consider an adopted child journeys through traumatic events in their life and their brains with FASD is not physically equipped to deal with the trauma, it is not surprising that 90% of individuals with FASD have mental health challenges.  However, when they don’t get proper support, they eventually become stigmatized and isolated.  They are now vulnerable to the five primary adverse outcomes.    Three of the four families have been able to turn their lives around because of one primary reason.  They are surrounded by strong communities including their relatives, their support group, and their service providers who have supported them in an informed way throughout these challenges.  Stephane Grenier has demonstrated the importance of peer-based mental health education, and our support group reflects this complementary role. 

This is why the Rural FASD Support Network is thrilled to now announce a special panel presentation at Queen’s Park in Room 230 at 1pm on FASD: Linking Health, Mental Health and Justice as part of the Feb. 24 FASD Awareness Day at Queen’s Park.  Dr. James Reynolds of Queen’s University, Dr. Kaitlyn McLachlan of Univ. of Guelph, Lorena Crosbie, Executive Director of Children’s Mental Health of Leeds-Grenville, Chief Mark MacGillivray of the Smiths Falls Police, Rebecca Fromowitz, Executive Director of Lanark Mental Health and Skylar More, adult with FASD will share their expertise in this area.  These six individuals will show with evidence why supporting mental health creates positive outcomes for everyone in society and in particular youth with FASD.  

Aidan Moore, one of our youth who recently had his first show in Almonte, will also be recording the presentation and will be happy to share it with you afterwards if you are unable to stay.  If you want to learn how policing and mental health are supporting each other with proven positive results in Lanark County and how it could be done in your riding, we would encourage you to stay with us after the noon presentation.  Boxed lunches and wraps will also be served by Dana Hospitality.  We look forward to seeing you there and thank you for all your positive comments.  For any questions, please feel free to contact Rob at ruralfasd@gmail.com