FASD Grows Up

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FASD Grows Up

• A presentation by
• Mary Berube, MSW, RSW

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DEFINITION
Fetal Alcohol Spectrum Disorder is a term used to
support individuals who have been diagnosed with
a spectrum of effects related to prenatal
alcohol exposure. It includes (but is not
limited to) Fetal Alcohol Syndrome, Alcohol
Related Neurobehavioral Disorder, Partial Fetal
Alcohol Syndrome and Static Encephalopathy.
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DIAGNOSTIC STANDARD

• Prenatal and/or postnatal growth retardation
  (weight and/or length below the 10th percentile
  for gestational age)
  
• Central nervous system involvement
• Characteristic face
• Evidence of maternal alchol consumption during
  gestation

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PRIMARY DISABILITIES

• LEARNING PROBLEMS
• ATTENTION
• JUDGEMENT
• IMPULSIVITY
• SLEEPING/EATING
• SOCIAL PERCEPTIONS

• COMMUNICATION-RECEPTIVE LANGUAGE
• ABSTRACTION
• MATH PROBLEMS
• MEMORY PROBLEMS

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SECONDARY DISABILITIES

• Not completing school/training programs
• Problems with social compliance (and the law)
• Addictions, substance abuse
• Problems acquiring and maintaining housing
• Employability issues
• Challenges with acquiring and managing
• Relationship problems
• Health problems, MH issues, reproductive issues

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• Therefore, adults affected by FASD usually
  need an external system of support to enable them
  to manage challenging situations and daily living
  skills. These issues may include parenting,
  employment, housing, educational training and
  social behaviour.

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• How can we improve the well being and stability
  of individuals with FASD?
  
• By enhancing protective factors and decreasing
  risk factors, through addressing prevention and
  management of secondary disabilities.

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PARENTAL SUPPORT

• It is the job of professionals to ensure that
  persons with FASD and their families/caregivers
  are well connected to the community and to each
  other with a variety of supports

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• Build on family strengths
• Ensure the affected person is in a safe and
  stable environment, prevent placement disruptions
  where possible
  
• Provide families with strategies and tools to
  decrease the risk of secondary disabilities
  

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• Provide advocacy for family/social network
  members as needed.
  
• Develop network of relationships with everyone
  involved in a participants life.
  
• Connect a participants service providers with
  each other to create an effective plan.

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• Ensure affected adult is able to assess current
  situation and to identify and communicate her own
  strengths, resources, needs and aspirations
  independently, or has the support to do so.
• Ensure affected adult is effectively connected
  with reliable resources that provide appropriate
  concrete support.

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• Ensure affected adults know how to set goals and
  to plan for their achievement either
  independently or with support.
  
• Ensure family is able to step back and let the
  system of supports take the responsibility for
  daily care, housing, food, finances, and other
  life essentials.

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• NOTE Parents must be able and encouraged to take
  breaks from the demands of care-giving,
  especially when their child is over 18 and living
  with at least some supports. Do not let support
  staff use shaming tactics to keep you on 24
  hour call!

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• Building supports and removing barriers
  encountered by individuals impacted by FASD
  requires advocacy, case conferencing, meaningful
  participation in the life of the community.

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• Bottom line
• Although we know that adults who have been
  affected by prenatal exposure to alcohol face
  limitations and barriers we believe that they do
  have strengths on which to build.

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FASD AND ADDICTIONS TREATMENT
FASD affected persons are at increased risk of
alcohol and drug problems, and substance abuse or
misuse is one of the major secondary disabilities
associated with having this disability.
There are several primary hurdles to successful
treatment of FASD clients
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• Recognition and diagnosis do not occur with
  enough frequency
  
• Unhelpful philosophic approaches of counsellors
  do not support individuals with FASD
  
• Precipitate discharge and inadequate post
  treatment supports
  
• Counsellors belief that client is able to
  follow through at discharge

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NOTE the dysfunction noted by addictions
counsellors is generally due to brain organicity,
not alcoholism per se, though ETOH and substance
use further reduces functioning, and requires
intense coaching to lessen its effects
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However, disabled persons with alcohol/drug
problems have many more serious problems and
disruptions than others they are more
debilitated by substance use and may as a
consequence exhibit violent, unpredictable, or
unexplainable behaviours, and higher frequency of
conduct disorders.
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• Inconsistent attendance is a problem for these
  persons, usually present as manipulative,
  unmotivated, depressed, thought disordered, in
  denial, or dishonest
• Group therapy and dredging up past may cause
  enormous trauma and be overwhelming for these
  persons

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• Worthlessness, depression, suicidal thoughts and
  panic are typical for a young adult with FASD,
  which are further exacerbated by substance use
  and abuse
• Client may state strong desire to change and
  become self-sufficient, but this goal is
  frequently not realistic without support

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• Affected individuals who have learning
  disabilities and low IQ are at risk to be turned
  down for treatment
  
• Those clients that are seen as non-compliant are
  frequently turned away from treatment

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• Addressing daily living needs as well as the
  almost insurmountable problems of living (as well
  as removing access to substances) is far more
  beneficial than insight work for these persons

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• Primary treatment goals should be realistic
  living arrangements and sheltered work
  environments, life skills enhancement
  
• Relapse prevention should focus on increased
  supervision and community supports rather than
  increased self-monitoring by client

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Financial issues remain one of the most
challenging to manage in the life of adults with
FASD
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Finding ways to manage their finances and
restrict spending raises ethical and moral
dilemmas matched only by the family planning
issues
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Many adults with FASD become parents in spite of
carefully orchestrated family planning efforts by
others. Families may end up caring for these chi
ldren unless they have specifically planned to
avoid doing so.
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What are the ways that families can attend to
this very delicate issue? How does having a suppo
rtive and understanding physician assist with
this? What are the options for caring for their c
hildren?
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SETTING BOUNDARIES

• Need to identify things you will not participate
  in - ahead of time!
  
• Need to make a plan for managing crises that do
  not involve rescuing
  
• Need to identify what issues cannot be ignored,
  who will manage them, and for how long

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SETTING BOUNDARIES cont

• How can a support group for parents assist with
  setting limits and boundaries?
  
• Are you willing to abide by limits that have been
  set and protect the family?
  
• How does this affect the siblings?

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PRIORITIES

• Regular family meetings
• Grief and loss counselling
• Planning a will and arranging a trustee
• Planning regular breaks from care-giving
• Setting clear limits for affected person