Supporting Adults Affected by FASD with Complex Needs ©2010

Walking the Journey Together: Supporting
Adults Affected by FASD with Complex
Needs ©2010
Brenda Bennett, Executive Director
FASD Life’s s Journey Inc.
17-794 794 Sargent Avenue
Winnipeg, Manitoba R3E 0B7
b.bennett@fasdlji.ca
1-204-772-1591

My Manitoba….
Population 1.3 million
Capital city is Winnipeg, Manitoba
Winnipeg has serious safety and security
problems
Identified as the crime capital of Canada
Significant Aboriginal population in
Winnipeg, expected to continue to grow
rapidly due to urbanization

Our Winnipeg..
The closer to the city’s s geographic centre, the higher the
incidence of violence and property crime
Such crimes are the product of poverty and social
exclusion and are concentrated in the inner city
Policing strategy for the inner city is incident driven
policing – 911
2005 introduced Operation Clean Sweep – zero
tolerance policing based on New York City model –
created great divide between police and community
First Nations population that struggles with
transgenerational affects of colonization

FASD Life’s s Journey Inc.
Evolved from a 2002 Coalition on Alcohol
and Pregnancy (CAP) sponsored Think Tank
on the service needs and gaps for adults and
late adolescents affected by FASD
Broad range of stakeholders participated to:
Identify the needs
Identify the service gaps, and
develop an action plan to address
the issues

The Response….
Development of the Manitoba FAS
Community Mobilization Project – 3 year
broad based community development
initiative
17 initiatives including the development of
a direct service model for late adolescents
and adults impacted by FASD & an FASD
focussed agency in Manitoba

FASD Life’s s Journey Program
Began providing intake and supportive
services in the fall of 2002
Direct service demonstrated the support
needs of this population
Provided neurodevelopmental services
that government programs valued and
relied on

FASD Life’s s Journey Inc.
By June 2005 secured funding for the
continuance of the direct service program
through the newly formed FASD Life’s
Journey Inc.
September 2005 FASD Life’s s Journey Inc.
initiated services for late adolescents and
adult Manitobans affected by FASD

FASD Life’s s Journey’s s Path
over five years
2005 2010

Definition of Complex
Whole made up of complicated or
interrelated parts
A group of obviously related units of which
the degree and nature of the relationship
is imperfectly known.
Intricate, involved meaning having
confusingly interrelated parts
Hard to separate, analyze or solve
Webster’s s 7 th new Collegiate Dictionary – purchased at Young’s s Stationary Ltd in Saskatoon

Complex Issues & FASD
When supporting FASD affected individuals we are
confronted with the addition of a myriad of complex
issues that are very difficult to support, manage &
explain.
We experience the reality that there is a growing gap
between the complexity of these problems and the
human capacity to comprehend them and to deal with
them.
In this situation there is a need for better methods and
tools, more knowledge and imagination then there
seems to be available in our standard domains of
knowledge, even in the realms of scientific knowledge.

Our consumers…
Individuals who have developmental disabilities
(IQ less than 70) and adaptive functioning
deficits (existing prior to age 18)
Co-occurring occurring disorders – schizophrenia, conduct
disorder, PTSD, etc.
Chronic neuropsychiatric abnormalities
Frequently homeless
Have failed in repeated “treatment” settings and
across the lifespan
Frequently in trouble with the law – often same
crime over and over and repeatedly breaking
probation or parole conditions

Our Consumers
Their behaviours are interpreted as willful and non
compliant
Their children are relinquished to care
Attitude that “being bad is better than being stupid”
Chronically unemployed
Involved in violent domestic relationships
Have high degree of health problems including
HIV/AIDS, HEP-C, diabetes, seizure disorders, STI’S
Have committed violent and serious criminal offences
Socially vulnerable
Criminalized due to disability
Have histories of severe neglect, physical and sexual
abuse

Our Consumers…
Pose risk to self or community
Have spent significant portions of their life
incarcerated/institutionalized
Have almost non existent family
involvement
Highly street and gang involved
Are at various stages of change related to
their addiction(s)
Survivors of CFS care

Brain Based Disability - FASD

9 Brain Domains

All Behaviour Isn’t t Due to FASD
Complex trauma
Developmental Disability
Acquired brain injury
Environmental –their
“Normal”
Significant physical and sexual abuse
Neuropsychological deficits related to substance
abuse
Mental health disorders
Addiction related
Chaotic developmental history
Reactive attachment disorder

Complex Issues
Unlikely to make sufficient change to own
internal resources to result in meaningful,
observable change
Autonomic (involuntary)nervous system arousal
when dealing with potent content issues
Neuropsychiatric abnormalities (ADHD)
Egosyntonic with respect to substance use
Reactivity, impulsivity and attention problems
Low stress tolerance
High risk behaviours that pose risk to self or
community

Complex Issues
High societal expectations for change/cure
Complex systems involvement with varying
degrees of understanding of FASD and related
complex issues
Struggle of dependence vs. independence
Grief issues related to living with a disability
Rage issues related to the chronic and
persistent harm that they have survived
There is little to no generalization of skills
acquired through traditional residential inpatient
addictions programs

Complex Issues
Stability will fluctuate and change over
time
History of multiple caregiver burn out
Disruptions in development
Typical developmental stages do occur,
but at different times – some behaviours
may be an expression of normal
development (what age of development
does the behaviour feel like?)

Complex Issues
Co-morbid mental health disorders across
multiaxial dimension e.g. dissociative identiy
disorder (formerly multiple personality disorder),
borderline Personality Disorder & antisocial
personality disorder
High risk, sensation seeking behaviour
Sensory over stimulation
Attachment Issues
Toxic pervasive shame – All-pervasive sense
that they are flawed & defective human beings

Social Conditions
Colonization
Exploitation & victimization
Cultural Discrimination
Neglect
Life experiences
Shame and blame
Multiple placements through CFS
Normalization of substance abuse
Normalization of inappropriate sexual behaviour
Partner substance abuse & domestic violence
Poverty
Sexual and physical abuse
Complex trauma

Secondary Characteristics
Self harm behaviours, suicide threats
Emotional/physiological problems
Eating disorders
Sexual offending history
Substance abuse & treatment history
Homelessness/transient
Co-morbidities
ABI
Health issues

Secondary Characteristics & Social Conditions

Best Practices
Statements based on
scientific evidence
and/or on the
perspectives of
consumers, expert
practitioners and
educators

In the Absence of Research…
It is important to note that the amount of research
conducted to evaluate the effectiveness of any
intervention intended to provide appropriate care
and support for individuals affected by prenatal
alcohol and other drug use, has been quite limited.
This is particularly the case with interventions
directed to adolescents and adults. In light of this,
observations of experts that work with these
populations are brought into the discussion to a
greater extent.
Health Canada 2001

Service Model
Practice based model that utilizes a best practices
approach based on the longitudinal finding of A.P
Streissguth (1997), Health Canada, others prominent
in the field, and anecdotal experience gained
through FASD Life’s s Journey Inc. programs
Case management (advocacy) mentorship model

Program Model
Neurodevelopmental
Framed by a harm reduction and
empowerment philosophy
Recognizing the lifespan nature of the
disability – won’t t accept temporary
funding for an individual

The Model
Individualized and holistic
Gender specific
Expectations are based on understanding
unique needs – strengths & disabilities
across the lifespan
Focus on the primary disabilities
Habilitative in nature
Culturally responsive
Change environments not people

Service Model
The model is not silo based
It is designed to meet relevant individual
needs.
The model doesn’t t attempt to modify the
individual to fit the system.
It is a system that accommodates FASD and
its diversity

Neurobehavioural Case Management/Mentorship Model
• Multi system collaborative continuum of care
• Practice based model based on therapeutic theories utilizing a best b
practices
approach based on the longitudinal research finding of A.P Streissguth
(1997), Health Canada, Diane Malbin, others prominent in the field, and
anecdotal experience gained through the FASD Life’s s Journey Program
• Case management (advocacy) mentorship
• Neurodevelopment approach to neurobehavioural challenges
• Honours safe cultural and spiritual choices of consumers
• Individual & gender centred – they are the experts on who they are and what
they need to live with their disability
• Recognizes the lifespan nature of the disability
• Understands and accommodates for a trauma perspective that doesn’t
blame the victim
• Appreciates the significant interconnectedness between traumatic
victimization and substance abuse
• Modify environments to ensure they are conducive to positive
interdependent living
• Reconnect with, or facilitate development of, caring social relationships
• Adult and Youth FASD Neurobehavioural - Case Management Mentorship Model (Bennett
and Wyllie 2002) ©

Program Features
Prevent FASD through primary prevention efforts with
consumers
Improve lifelong outcomes through the provision of
appropriate and accommodating service delivery
Responsive to vulnerable youth and adults
Designed to achieve maximum interdependence
Community intake through one point of access
Screen individuals to enter a coordinated &
complimentary continuum of supportive services
Key case workers will develop engaging, culturally
appropriate, mentorship relationships
Assess functionality through the use of functional
assessment tools so that supports can be appropriately
targeted to each individuals needs
Identify service/support needs of the consumers
Develop individualized transitional /or habilitative plans

Program Features
Utilize transitional teams/network of support that are inclusive of
service partners and those adults identified by the individual as a
significant in their life
A primary focus on elucidating the individuals long term
neuropsychological consequences of FASD
Coordination of services among a multidisciplinary network defined
ed
by the consumers needs
Screen and refer youth for diagnostic services
Provide culturally appropriate services that strengthen the ties to
their culture and communities
Strengths based
Gender specific and responsive
Document the progress and evaluate program outcomes
Identify emerging issues ongoing and advocate for the development
of services identified as gaps in the service system
Provide basic life essentials
Referral to programs where eligible to meet relevant needs
Reintegration to community from Provincial Correctional facilities

The Culture of the Services
• Promoting protection and safety
• Individual centered - Consumers must
have a discernable influence over
their life –even if small steps initially
• Fostering of interdependence, not
independence
• Respectful - accepting & non
judgmental based on
• Relational – building and
maintaining positive, trust based
supportive relationships that are
caring and consistent
• Trauma Informed - account for the
trauma perspective
• Gender Centered - women-centered,
men-centered
• Provides necessary life resources
• Harm Reduction Oriented – minimize
known harms associated with
substance use
• Individualized -Accommodate the
individuals unique needs and
deficiencies with realistic social
expectations based on the persons
actual abilities
• Culturally competent & culturally
safe
• Strengths based
• Voluntary – non mandated
• Use of a Neurobehavioural Lens -
Belief that behaviours are acting
out of disability
• Proactive approach to anticipate
and avoid problems and also a
reactive response to provide
assistance when crisis occur.
• Reconnect with, or facilitate
development of, caring social
relationships
• Holistically health promoting

Services are informed by the
following:
Functional assessments – SIB-R, ICAP,
etc.
Diagnostic assessment (where available)
Identification of the brain domains
Clinical consultation
Social mapping
Consumer identified/endorsed support
Consumers cultural and spiritual context

Neuropsychological
Assessments
Neuropsychological assessment from a
practitioner knowledgeable regarding FASD
Neuropsychological assessment will identify
cognitive and functional deficits and individual
strengths
Once the strengths and weakness profile is
established it will assist to construct strategies
and accommodations

FASD Neurobehavioural Domain
Domains
Communication
Adaptive behaviour
Assessment tools
California verbal learning
test 2nd edition, sensory
motor difficulties, sensory
motor profile
Observation, adaptive
behaviour
Cognition
Executive Functioning
Attention deficit/hyper
activity
Academic/higher order
problem solving
Wechsler adult intelligence
scale-3 rd edition
Behaviour rating inventory
of executive functioning
(BRIEF)
Observation, Connors rating
scale
Halstead category test

The Service Team

“People Make the Difference,
Not Programs”

Multi-Disciplinary Service Team
Clinical Case Manager
Psychiatric consultations/assessments-risk
assessments, functionality assessments,
brain domains, offender counselling, etc.
Occupational therapy consultations,
assessments and recommendations
Case Workers/Support Mentors
Elders / Cultural Workers
Those family or friends important to the adult
Community Collaterals – Probation, CFS,
EIA, MH, other community agencies, etc.

Case Study

Axis I
Cocaine dependency
Cannabis dependency
PTSD chronic and severe
Learning disorder
ADHD
Rule out dissociative disorder

Axis II Diagnosis
Mental retardation
Effects of exposure to ethanol in utero
Personality disorder (NOS) – borderline,
antisocial, compulsive sexual acting out

Axis III
Pregnancy
Recurrent STI’s

Axis IV
Ongoing chaotic and dangerous lifestyle, severe
childhood neglect, chaos and abuse, active in
sex trade, past poor adherence to medication,
burned out many resources
Ongoing relationship that is not in agreement
with the treatment team
Strengths & resources - sense of humour,
enjoys music, and dancing, decreasing cocaine
use, beginning to respond to structure and
support

Protective Factors
Develop relationships over the course of time in
a non demanding and non threatening
atmosphere
Utilize situational inducement which adapts the
environment in order to mitigate concerning
behaviour
A long term approach to begin to engage in a
longer term relationship even though the
individual will remain very high risk in the context
of their current lifestyle and substance use

Protective Factors
Psychotropic medication
Structure, support, routine
Appropriate level of support in a
safe/secure residential setting
Integrate the therapeutic approach within
the context of the individuals day to day
lifestyle
Require longer term re-socialization
Adapted environment

Assessing Appropriate Housing
Related to Risks
Inconsistent psychiatric function –
psychosis
Neuropsychological deficits related to
substance abuse
IQ level (55-68)
Adaptive functioning that precludes them
from living on their own

Residential – Men’s
“Running and gunning”
Extreme behaviour – arson, sexual
assaults, manslaughter, harassment, utter
threats, breach of probation, car theft, B &
E, trafficking, possession, assault with a
weapon, mischief, destruction of property

Women’s s Residential
Due to extreme vulnerability to exploitation
Pose significant risk to community or self
Parenting home to allow mothers a role in
mothering to the extent possible
Severe addiction issue that place them at risk of
harm in the community
Those with significant mental health disorders
who require significant support to comply with
medication management or physical health
issue such as diabetes or HIV/Aids.

Foster Placements
Social vulnerability -Vulnerable to
exploitation and victimization
Don’t t have extreme psychiatric issues
Small stature males with FAS diagnosis –
they feel safe in foster placements than
living interdependently in the core area of
Winnipeg where they are victimized and
exploited

FASD & Addictions

Inpatient Addiction Treatment
To benefit from inpatient addictions
programs the individual must be:
• Ego-dystonic (cognitively able to internalize
concepts)
• Have the ability to generalize these concepts
outside of the parameters of the stimulus
context within which they are taught

Addictions Screening & Response
• Utilize in house addictions screening questions specific to this population that accommodates for
their communication and cognitive challenges.
Screening questions will occur in a manner that is comfortable and a
safe for the consumer
(SAMHSA 2003).
We undertake the initiation of conversations regarding substance use which provides an
opportunity to assist the individual to connect substance abuse with unfavorable consequences
e.g. incarceration. It is common that affected individuals have not identified that they have
addiction issues and that they will know when to access addictions treatment.
Addiction screening will occur through an incorporation of questions into practical conversations
that program staff have with consumers. In these conversations we will identify factors that have
enhanced and or hindered their ability to achieve abstinence or reduce harms related to
substance use.
We utilize the stages of change model (Prochaska and Di Clemente -1986) to develop
individualized addiction supports in tandem with making environmental ental adaptations to support
success. This model is preferred as it is based on collaboration n with those who are receptive to,
or not yet open to or able to, pursuing change.
Staff have a non judgmental attitude and the intent of encouraging and empowering consumers to
pursue positive life changes by adapting their environment. Program staff do not have a moral
evaluation of consumers’ behaviours or substance preferences.
Referrals are made to existing Manitoba addictions programming available a
at Addictions
Foundation of Manitoba, Behavioural Health Foundation, Marymound (Meth unit), etc. Program
staff will assist the treatment program to accommodate for the affects a
of FASD.

“Probations Substance Prohibition
Consequences
Not a matter of prohibiting substance use –
individuals need to develop the personal
supports and internal resources for any reliable
change to occur in their substance use habits
Entanglement in the subsequent legal
consequences only further remove then from
community based programming and place them
in harms way with their “range mates”

Harm Reduction Features..
Pragmatism: Harm reduction accepts that
some use of psychoactive substances is
inevitable, and that substance use can be
expected (80%) as a secondary disability
in the absence of universal protective
factors.

Harm Reduction..
Humane Values: The dignity and rights of
the person who uses substances are
consistently respected. No moralistic
judgment is made, either to condemn or to
support use of substances regardless of
the level of use or the method of intake.

Harm Reduction
Focus on Harms & the Primary Disability:
The extent of the person’s s substance use
is of secondary importance to the harms
resulting from that use. We do not treat
individuals for their secondary disability
rather than their primary disability.

Harm Reduction
Hierarchy of goals: : The individuals most
pressing needs are addressed first. The
harm associated with substance use and
abuse can include: dependence, chronic &
acute health problems, accidents,
aggression & violence, alcohol & drug
related crime, overdose, public nuisance &
contribution of infectious diseases such as
HIV/AIDS, Hepatitis C, significant
victimization and chronic homelessness.
Adapted from Marlett, G.A & Gordon, J.R. (1989)

FASD & Addictions Needs © Bennett.B 2006
Access to immediate detox services
Addictions treatment should ideally take place
in their natural environment
Long term residential /supported
environment/program
Alternate to traditional addiction models based
on adapted cognitive behavioural approaches
Stages of change and motivational
interviewing (adapted to accommodate for
primary disability)
Daily reinforcement with a focus on pro-social
activities, lifestyle and with competing
responses to substance use/abuse
Emphasize enhancing self esteem, self
respect and promote interdependency
Environmental adaptations

FASD & Addictions Needs
© Bennett. B 2006
Create a peer network that is healthy and
functional –this can be very challenging
More structure and less free time with an
emphasis on life skills, leisure and recreational
activities
Eliminate or reduce triggers – e.g. location of
residence, money, people, etc.
After care program adapted to individual needs
in their natural environment
Utilize individualized harm reduction strategies
Account for the trauma perspective & respect
the interconnectedness of trauma and
substance abuse

Addiction Treatment Should:
Be adapted
Take place within the individuals natural environment
Promote and validate their attendance within the residential
placement
Be reinforced daily
Focus on pro-social activities, lifestyle and competing responses to
substance use/abuse.
Place emphasis on self esteem, promoting autonomy, self respect,
and create peer network that is healthy and functional
Emphasize life skills, recreation,leisure
Decrease anxiety with intervention around transitional issues, social s
stories, and teachable moments
Due to Axis II pathologies this intervention must be ongoing across
time
Respect the individuals spiritual journey

Challenges..
Need a Neurobehavioural sensitive service system – ethical principles drive
the work/involvement of collaterals and systems, however, this can c
significantly interfere with the FASD specialists ability to provide supports to
youth and adults
Systems that focus on targeting behavioural symptoms rather then
recognizing the causation of the behaviour – brain based
High societal expectations
Rehabilitation expectations vs habilitative focus across the lifespan
Response of police in the absence of knowledge about the disability. ity. FASD
is an explanation not an excuse
Belief that structure is a form of control

Challenges…
Beliefs that structure, environmental
adaptations and mentorship is simply
“glorified babysitting”
Tension between community living sector
principles and beliefs, and the
environmental adaptations implemented
for those living with FASD
Mental health sector has a one size fits all
approach to service

Challenges
New agencies marketing themselves as
FASD specialized when they don’t t utilize a
best practice program model
The internet
Gang cultures and practices
Economic downturn

How to Support Success…
Adjust your expectations to the developmental age,
which may be very different from the chronological age
Receptive and expressive communication may not be
the same. Often can repeat something back but may
not fully understand it. Follow through with individual
to ensure that understanding is reached.
Validate their experience and emotions
Develop a neurobehavioural sensitive service system
– ethical principles drive the work/involvement of
collaterals and systems, however this can significantly
interfere with the FASD specialists ability to provide
supports to youth and adults
Have patience with systems – your focus is to
advocate and educate

How to Support Success…
Repetition of directions/instructions – allows
information to be stored in the habit area of the
brain (hippocampus) where it will be
remembered more easily
Routine and consistency help the individual
make better sense of their world. This helps
them function more effectively
Impulsivity can make them impulsive at times
and can affect their relationships. Role
modeling and visual cues can help enhance
interactions with others

Questions????