Article Review: Post-incarceration Experiences of Adults with FASD & Mental Illness

The lived experience of paroled offenders with fetal alcohol spectrum disorder and comorbid psychiatric disorder

Authors: Caroline L. Tait, Mansfield Mela, Garth Boothman, and Melissa A. Stoops

Journal: Transcultural Psychiatry

Dr. Caroline Tait is a medical anthropologist with particular research interests in Indigenous health and social justice, and the challenges faced by women who are marginalized. She is with the Department of Psychiatry at the University of Saskatchewan. Dr. Mansfield Mela is an academic forensic psychiatrist in the University of Saskatchewan and a founder of the forensic subspecialty in Canada. He is a CanFASD research lead in diagnostics. He brings a clinical perspective to his research questions and seeks to generate research and implement knowledge to achieve evidence-based practice amongst forensic mental health and FASD populations. Garth Boothman is one of the subjects of this research and chose to be a coauthor. Melissa Stoops was a student researcher on the project.

 


 

This paper shares the stories of two men, Garth and Arnold, who met and became friends in prison in 1980 and eventually lived together as roommates in the community in 2013. The authors explore the elements that supported their successful cohabitation for 18 months and what contributed to its breakdown.

As an introduction to Garth and Arnold’s stories, the authors summarize the issues many individuals with FASD face as they move through the criminal justice system. Because of variability in learning, language, and memory skills, some individuals with FASD may seem to understand certain parts of their charges, rights, and trial experience, but they may not be able to remember these details or be able to follow through with standard probation conditions. As a result, breaches of conditions of release are common for paroled offenders living with FASD, which can lead to ongoing involvement with the criminal justice system. The authors use the word vulnerable to describe the transition to the community after incarceration:

“Undiagnosed FASD with comorbid psychiatric illness, along with a lack of supports such as stable housing and transportation, and effective treatment options, exacerbates the problem and increases the risk of recidivism.”

Garth and Arnold are men in their 60s whose life histories involved significant turbulence and trauma in their childhoods, suicide attempts, and psychiatric illnesses that were diagnosed while in prison serving lengthy sentences for serious crimes. In addition to their FASD diagnoses, Garth is diagnosed with borderline personality disorder, antisocial personality traits, and schizoaffective disorder and Arnold is diagnosed with depression and schizophrenia. Fortunately, Garth and Arnold attended a specialized clinic in Saskatoon, Saskatchewan that is dedicated to addressing the gap in FASD assessment for paroled offenders living with mental illness. Earlier research out of this clinic identified five success factors for parolees living with FASD and comorbid psychiatric illness:

(a) a stable, consistent, and trusting relationship with a psychiatrist;

(b) a medication regime that provides optimal satisfaction (e.g., fewest side effects while successfully regulating symptoms);

(c) living in a stable, safe home environment;

(d) consistent family and social support networks; and,

(e) constant and reliable mentors trained in the skills required for hands on mentoring with individuals with FASD

To explore how these factors play out in the lives of parolees with FASD and mental illness, Garth and Arnold shared their lives with the researchers through interviews and photographs representing their everyday lives.

Supports and Success: Upon release from prison, the men shared the same community support worker and parole officer. After living in different living arrangements for a few years (supervised mental health approved home, then less structured home, then independently for Arnold and semi-independently for Garth), the support workers suggested they share an apartment to help with living expenses. The men were proud of their home and found many positives in living together. These included “having another person around to talk to, share a home life with, who understood what it was like to live with mental illness, and whom they could rely on to help them if they were becoming sick again.” They made community connections and were contributing to society in meaningful ways. The shared and coordinated supports meant they received regular check ins that helped them adhere to their parole conditions and organize their daily routines.

“To foster independence, mental health services usually encourage reducing and withdrawing services when clients are doing well.” However, the next part of Garth and Arnold’s story is a powerful and persuasive argument against this reduction in services even when things are going well.

Breakdown: Unfortunately, contact with their care team decreased over time. There were several stressors in Arnold’s life that led to him becoming very sick and losing touch with reality, and although some steps were taken to connect him with his health care team, there was an over-reliance on Garth to manage Arnold. Arnold became increasingly disordered and violently attacked Garth, resulting in acute injuries for Garth and two months in the psychiatric hospital for Arnold. Remarkably, the men remain friends. Garth asked for charges not to be laid against Arnold because he understood “Arnold was very sick when he attacked him and because he knew that being sent back to prison would destroy the progress Arnold had made postincarceration.”

The Lessons:

  • Success and stability should not be met with complacency or the removal of community or health services for individuals living FASD with or without comorbid mental illness.
  • Although there are no specific guidelines for long-term treatment of FASD, the authors suggest “support, supervision, and structure as well as mentoring by support workers and referral to specialists including psychiatrists and psychologists.” Garth and Arnold experienced 18 months of success with this model until supports were decreased.
  • There is resilience and vulnerability in Garth and Arnold’s story. 24-hour mentor availability and hands on access to care can support resilience through treatments and supports while also recognizing ongoing vulnerability by monitoring for relapse signs and risks for recidivism.
  • Garth and Arnold experienced significant adversity in their childhoods. This adversity, combined with neurocognitive deficits, likely elevated their risk for criminal justice involvement. The authors point to the “need within our society to protect and nurture vulnerable children, best done by notable reductions in poverty, comprehensive and sustainable supports for vulnerable families, and revisions to the child welfare system”  (Link to more work done by Dr. Tait on this topic).

     


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    Hello! I’m Dr. Marnie Makela and I’m one of the voices behind the CanFASD blog. I’m also a researcher with CanFASD and a Registered Psychologist in Edmonton, AB. I received my PhD in School and Clinical Child Psychology from the University of Alberta.  I work with individuals with FASD and other complex disabilities, their families, and their service providers to complete assessments and develop effective intervention plans that will create meaningful and positive life experiences. 

     

     

     

     

     

 

 

 

 

A Reflective Essay on Housing and FASD by Elizabeth Carlson

Today’s post is a reflection piece by Elizabeth Carlson, a PhD student from the University of Alberta. You can reach her at emcarlso@ualberta.ca to continue the conversation about housing initiatives for individuals with FASD.

 

Elizabeth Carlson
Elizabeth Carlson, M.A

As a student member of the Alberta Clinical and Community-Based Evaluation Research Team (ACCERT), at the University of Alberta I have the privilege of being a part of the Housing Initiatives team.  As many of you may know, or have heard through the grapevine, we were able to bring together a group of experts for two days of impactful discussion about housing individuals with FASD.  Following the meetings, I was asked by CanFASD if I could write a blog about why I thought the housing meetings had been such a success.  In my reflection, I’ve chosen to focus on the collaborative nature of the meetings, and my belief that we can change the way we do things by pooling our knowledge and having these tough conversations.  I think the benefits of working this way are many, and I wanted to share my experience, and the appreciation I felt after being part of that meeting with the wider community.

Over the holidays, I’ve had some time to reflect on my experiences of the last year.   On November 20th and 21st, 2017, I was privileged to be involved in the CanFASD Housing Initiatives meetings.  These meetings brought together people with Fetal Alcohol Spectrum Disorder (FASD), parents of children with FASD, academic researchers, and housing and FASD experts to discuss current understandings of housing for individuals with FASD.  The end goal of the CanFASD funded Housing Initiatives project is for the researchers to present a framework and evaluation plan for housing individuals with FASD that can be piloted in the community.  Rather than solely consulting the academic literature to create this framework, we wanted the voices of all those involved and impacted by housing decisions to have the opportunity to share their knowledge and expertise.  This was my first meeting of this kind, and I was nervous about how it was all going to go as we brought these diverse groups together to discuss a very important and hot topic.

As a doctoral student in School and Clinical Child Psychology, most of my meetings are at conferences where I’m surrounded by fellow academics.  Throughout my schooling I’ve heard of the divide between researchers and frontline workers, between disciplines (e.g., psychology and medicine), and between researchers and the general public.  At the heart of the divide is a lack of communication – people, often unintentionally, become stuck in their bubbles.  Time constraints may prevent researchers from reading much outside their discipline, traditional venues for the dissemination of information are often geared toward academics in one topic and/or discipline, and, although improvements are being made, academic research isn’t always widely disseminated in accessible language for the general public to access.  What happens then, is that people become niche experts.  For instance, people may become experts in the lived experience of parenting children with FASD, some may know all the latest research on the most successful housing models for people with mental illness and substance abuse, and some may be policy experts that have a more firm grasp on the political side of social programming.  It is wonderful that we have experts in all sorts of areas, but when we fail to consult outside of our bubbles, we end up with knowledge gaps.  When experts in one domain begin to plan or make changes without consulting one another things may not end up as planned.  That is not to say that getting a diverse group of experts to talk about a hot topic is easy!

We first came together as a group on the 20th.  That day, approximately 40 experts from the housing and FASD realms were presented an overview of the current scientific support for housing considerations, and models for individuals with mental illness and substance abuse problems.  One such model is called Housing First, and speaks to the need for housing individuals first before attending to any of their other needs.  This model is based on the view that having a home is a basic human right that everyone should have regardless of their financial, health, or psychological status.  We discussed what parts of the Housing First model work well for individuals with FASD, and what the experts saw as problems with the model.  This part gave an introduction to the housing world for those who were primarily experts in FASD.  An overview of FASD was then given as a refresher and introduction for those who were not as familiar with the disorder.  Finally, we had a parent of a child with FASD discuss his experiences as a father, and the considerations he had to make when thinking about his daughter’s housing needs.  A lot of information was given on this first day as people discussed pressing issues in groups and began to feel comfortable interacting with one another.  By the end of the day, the glimmers of the hard discussions to come were starting to show.

As I drove home that night, my researcher brain was firing and I was unsure if we were going to get the information we were looking for out of this meeting.  Typical social conventions of niceties had seemed to reign supreme.  I didn’t know if people were going to challenge each other and get down to the nitty gritty, so to speak.  Well, I needn’t have worried!  We came in on the 21st with a reminder of why we were all there, and a verbal acknowledgement that we were about to have some tough conversations.  This acknowledgement, and a message of appreciation for all those who were about to engage in these dialogues set the tone for the day.  Tensions visibly subsided, and people were ready to get down to business.  Attendees identified many considerations that weren’t evident in the academic literature, but were, nonetheless, just as important.  Without an innovative collaborative meeting such as this, the information we collected through the lively discussions would have remained siloed in experts’ bubbles.  Instead, we now had invaluable and expansive data for our framework creation process.

At the end of the second day, I was elated about the outcome.  The attendees had been passionately engaged, many had shared their contact information and had expressed an interest in remaining an active part of the housing for individuals with FASD framework creation process, and all had graciously left us with tokens of their passion and expertise.  I chose to write this post about the process rather than the information collected, as the latter is yet to come and the former was what impacted me the most.  Post-meetings, I felt invigorated as a researcher and part of the professional community.  I learned that bringing together great minds from different areas is possible and can lead to the production of some wonderful results.  I saw firsthand that my knowledge as a researcher was limited, and I experienced growth by challenging myself to step outside of the box and invite others in to expand my horizons.  After all was said and done, I knew that this type of collaboration was something I want to continue as much as possible in my professional career.  I cannot thank all those who attended these important meetings enough for sharing your time and knowledge with us, and for leaving me with such a lasting impression.  Finally, much appreciation is given to CanFASD for promoting and funding such an innovative professional and research experience.  It makes me hopeful for the future, that we are moving toward more collaborative research, practice, and policy planning where we keep the best interests of those in need front and centre.  I believe that pooling all of our knowledge and power is the best way to do so.

Top Articles of 2017

CanFASD staff, researchers, and Family Advisory Committee members worked together in selecting certain articles to highlight some of the work that has been published over the last year in the field of FASD. Over 520 papers published on FASD in 2017 were narrowed down to a final list of 35 that focus on CanFASD’s areas of emphasis in FASD prevention, intervention, diagnosis, social justice, child welfare, and family collaboration. Additional consideration for what constituted the “top” articles included: generalizability to Canadians, influence on practice or policy, novelty, scientific rigour, and media attention. For a PDF version of the final document please click here: Top Papers of 2017 FINAL 

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KellyEric-21
Hello! I’m Dr. Kelly Harding (née Coons) and I’m one of the voices behind the CanFASD blog. I’m also the Research Coordinator and a Research Assistant with CanFASD working in Ontario, Canada. I received my PhD in Interdisciplinary Rural and Northern Health from Laurentian University.  My work focuses on health services in rural and Northern Ontario, with a particular focus on health care professionals in training and their preparation regarding FASD.

 

Unique Ways to Participate at the 8th International Research Conference on Adolescents and Adults with FASD

The 8th International Research Conference on Adolescents and Adults with FASD is coming up from April 18th to 21st in Vancouver, BC. There are some great opportunities for people to contribute to the conference this year. Here are two ways you can take part:

1) “This Is Me” is a poster format presentation that will showcase the work of teens and adults who have FASD. The conference invites individuals with FASD to share photos, poetry, artwork, written personal stories, crafts, opinion pieces (what you think about something that is important to you or to others), ideas for change, and any other topic or idea that can be displayed on a poster. These posters will be exhibited at the conference and everyone attending will be able to see them.

2) FASD Marketplace: This year, the conference is also looking to provide a marketplace area for teens and adults who wish to sell art and craft products they have made. Sellers are responsible for their own items. If you wish to sell your work, please contact Cynthia at cynthia.ipce@ubc.ca or at 604.822.7524 ahead of time so that a space can be arranged for you.

Screenshot 2018-01-18 21.06.45

For more information about the posters and marketplace click here and for more information about the conference click here

Survey from The Society of Obstetrics and Gynaecology Alcohol & Pregnancy

Survey link: https://www.research.net/r/providersaboutalcoholandpregnancy

The results will be anonymous and we need to have as many respondents as possible to make the data meaningful.  Participants will be entered into a draw for an iPad

Service providers are ideally suited to screen pregnant women for alcohol use during pregnancy, as they are the point of contact with the healthcare system for these women.  It is imperative that they have appropriate training and skills to feel comfortable and competent working with pregnant women in a culturally safe and sensitive manner. As well, they must have the knowledge needed to assist and connect individuals and families with existing resources and services.

The Society of Obstetricians and Gynaecologists of Canada is leading a large National study and wants to work with you (service providers in social services, education, justice, public health, nursing, midwifery, substance abuse, mental health, child welfare, women’s shelters, homelessness workers, adult literacy, etc) to determine the knowledge, attitudes and behaviors of service providers with respect to alcohol use during pregnancy. The results of this survey will be used to inform the direction and content for training and education material for service providers related to screening and counselling for alcohol use during pregnancy.

Sincerely,

Dr. Jocelynn Cook

Chief Scientific Officer

The Society of Obstetricians and Gynaecologists of Canada

Learning Together: Family Advisory Committee Reflections Part 2

This is the second part of the CanFASD Family Advisory Committee’s reflections on the Learning Together workshop themes: FASD as a Whole Body DisorderAging and TransitionsSupports and Strategies, and Advocating for Supports. Today’s post is Part 2, and includes reflections from FAC members on the third and fourth themes. See Part 1 here.

Thanks again to FAC members Tammy Roberts, Simon Laplante, and Jennifer Noah for their reflections. You can find their biographies on the CanFASD webpage here.


The third theme emerging from the workshop was about Effective Intervention Strategies and Supports. Participants discussed their priorities for research on supports for caregivers and individuals with FASD:

  • Addressing caregiver wellbeing was important to participants and they suggested respite is needed across the lifespan. Caregivers also want support with: “parent support groups, financial assistance, strategies for coping with mental health issues, supported parenting models, resilience building, and support for grief and mourning.”
  • At a broad level, participants see the need for changing general perceptions of FASD, reducing stigma, recognizing invisible barriers, changing media portrayals of FASD, and implementing mandatory FASD training for all service providers working with this population.
  • At the individual level, participants emphasized the importance early intervention that is low-cost and tailored to individual needs. They praised structure, repetition, and trial and error in finding effective strategies and are interested in seeing studies about the impact of exercise, sports, and nutrition.
  • Participants want to debunk hopelessness and replace it with hope-based practices.

We asked FAC members some follow-up questions about strength-based practices and what strategies actually look like for their family members:

Q: Participants highlighted the need for a strengths-based, person-centred approach when working with people with FASD. Can you describe what this means to you and your family members? 

A: Strengths-based, person-centered approach means to our family, that our child’s specific strengths are thoroughly considered, as well as the deficits, and seeking to find solutions and strategies that can bolster our child’s strengths and successes. Person-centred means the person with FASD, and at present because our child is quite young, our needs and strengths are what drive the interventions and approach. By drawing upon personal, family and community strengths and resources, we all feel more empowered, rather than imposing clinician values or strategies that might not be a good fit culturally or don’t acknowledge our family’s resilience and capabilities. 

Q: Structure and repetition are so important for many people with FASD, but they can take on different forms depending on the person. Can you share what structure and repetition looks like for you and your family members? 

A: Just a small example. Structure and repetition are vital for our daughter, and essentially for all of us to prevent crisis or explosive or risk taking behaviour for our child with FASD. We have visual schedules posted that we refer to multiple times per day. We have finally had the school create a visual schedule at school which helps our daughter’s anxiety and keeps things predictable. Even if we have to change things, because life happens, we include it on a written schedule that our child checks frequently. One very important reminder, and it’s slowly starting to sink in and transfer across multiple settings, is looking both ways before crossing the street (all streets), parking lot (in all lots including school, store, up north and down south, etc.). You can think you’ve covered a basic safety principle such as crossing the street, but if you only do it outside your home, it might be the only place your child remembers or considers road safety because of executive functioning difficulties. We have family agreements printed that are posted on the walls and rehearsed at all meal times and reminded throughout the days. We review social stories with simple messages. We use these messages, mostly for safety and social appropriateness as scripts that we repeat, repeat, repeat. 

A: I find that structure and repetition works well in my family with the basics, i.e.: safety, shelter, and food.  As they become adults we can incorporate some flexibility when it comes to curfew and choices that are not harming or that they might be able to learn the negative


The fourth and final workshop theme was Advocating for Effective Supports for People Living with FASD. Feedback from participants covered training and education, stigma, justice interventions, prevention, and defining success for FASD:

  • Participants discussed the need to reduce stigma and blame, use research to counter negativity, explore how attitudes impact the provision of services, and educate the public about the trauma that is often part of the FASD picture (the common messaging and language guides discussed in this post are great resources for these issues).
  • Regarding justice involvement, participants want to see a shift toward flexible, creative, individualized, sensible, and realistic expectations.
  • Ensuring safe drinking levels and harm reduction is targeted for all demographic groups, not only those deemed to be “high-risk.”
  • Evaluation of program outcomes that go beyond cost analysis, because this approach results in people with FASD being portrayed as a burden.
  • Participants shared that research on successful outcomes must be: “practical, interconnected across multiple systems, country-wide rather than region-specific, and always involve consultation with individuals living with FASD and their families.”

Q: Participants emphasized the value of peer training and learning exemplary parenting practices from other caregivers of individuals with FASD. What are your go-to resources for learning from other caregivers? 

A: I am a member of Shifting the Paradigm Toward a Neurobehavioural Approach on facebook. I also follow several FASD organizations and blogs that provide evidence based information, are not shame based and are respectful in the way people and children with FASD are talked about. I don’t really have a circle I can check in with, now I do with FAC, but mostly I consult the literature all the time, several times a week. I also review grey literature and organization promising practices and parent voice often. 

A: The only resources I have is meeting face-to-face with other parents/cargivers.

Q: The final line in this section was: “the ultimate hope is that our systems might one day develop the capacity to recognize the unique needs of each individual and value different forms of success for people living with FASD.” Can you share what success means for you and your family members? 

A: Right now success is our daughter attending full day grade 1 with the school finally believing us and implementing sensory breaks, a visual schedule, extra support with classroom instruction and a visual timer for transitions. Since this has become a part of her life, we have seen a complete disappearance of violence and aggression after school and on weekends. Her hyperactivity has diminished. Those small accommodations, for now at least, have given all of us some quality of life and peace. Sometimes it really can be that simple, to just trust that parents know what they are talking about and what the child needs to settle and learn. Success right now is me being able to cook while my children colour, play lego or do something quietly. I can cook supper…that was not a possibility before the school began accommodating. Our daughter with FASD could not stay safe, could not settle her body, could not refrain from violence and property destruction and could not play with anything and have any imaginative capacity at all. This is a beautiful success for as long as we have to savour it. 

A: For me success can change from day to day. Sometimes if might just mean that my child gets out of bed and other days it might be a huge accomplishment like completing something they have been working in for a long time. We all know that individuals with FASD experience failure so we need to create and environment so they can succeed.


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Hello! I’m Dr. Marnie Makela and I’m one of the voices behind the CanFASD blog. I’m also a researcher with CanFASD and a Registered Psychologist in Edmonton, AB. I received my PhD in School and Clinical Child Psychology from the University of Alberta.  I work with individuals with FASD and other complex disabilities, their families, and their service providers to complete assessments and develop effective intervention plans that will create meaningful and positive life experiences.