Towards Developing a Manual for Residential Treatment Centers to Support Individuals with an FASD and Their Families

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1 Towards Developing a Manual for Residential Treatment Centers to Support Individuals with an FASD and Their Families Presented By Dr. Pamela Gillen University of Colorado Anschutz Medical Campus and Dan Dubovsky MSW, FASD Specialist

2 Learning Objectives: By the end of this session, participants will be able to: Examine the importance of effective residential treatment in the continuum of services for individuals with an FASD; Discuss why typical programming in residential treatment is not often effective for individuals with an FASD; Describe modifications to treatment approaches that can improve outcomes for individuals in treatment, their families, and the agencies that provide services for them.

3 Why Residential Treatment Different people need different levels of support People need different levels of support at different times in their lives It is important to have a continuum of care options

4 Why Residential Treatment This continuum needs to range from non-intrusive community based informal supports through to hospitalization It is important to determine the least restrictive setting that is the most helpful for an individual at a specific time

5 The Importance of Residential Settings They can provide Safety Support Consistency A controlled setting Help with peers Respite for the family Support for the family in how best to help the individual

6 Learning Objectives: Examine the importance of effective residential treatment in the continuum of services for individuals with an FASD; Discuss why typical programming in residential treatment is not often effective for individuals with an FASD; Describe modifications to treatment approaches that can improve outcomes for individuals in treatment, their families, and the agencies that provide services for them.

7 Why May Residential Care Be Ineffective for Individuals with an FASD? Many residential programs operate on a system where everyone follows the same reward and consequence system How to earn points, stars, levels, etc. When points, stars, or levels are reviewed What happens when points or levels are earned What happens when points or levels are not earned

8 Why May Residential Care Be Ineffective for Individuals with an FASD? Many residential programs operate on a system where everyone follows the same process Treatment is based on the concept that people need to take responsibility for their actions and learn by experiencing the consequences of their actions It is easier to treat everyone the same way Fair and equal are seen as interchangeable terms Individuals are seen as unmotivated or noncompliant if they do not follow the protocols They do not take into account the brain damage in FASD

9 Co-Occurrence in Individuals with an FASD FASD occurs in any community where women drink Many pregnancies are unplanned Many women do not know when they first become pregnant Alcohol is part of the social structure for many We are aware of multigenerational alcohol use in some families For women with mental illness, one of the reasons for substance use is self-medication

10 Co-Occurrence in Individuals with an FASD For women with mental illness, one of the reasons for substance use is self-medication A number of mental illnesses have a genetic component The genetic vulnerability is passed to the next generation Research has shown that the number of stressors and the ability to cope with stress increase the risk of underlying vulnerabilities to develop into full blown disorders The child is at higher risk of developing the mental illness while we miss the co-occurring FASD

11 The Importance of Recognizing All Co-Occurring Issues We need to expand our thinking beyond co-occurring disorders to co-occurring issues Optimal outcomes in the treatment of cooccurring issues only occur when all are accurately diagnosed and treated simultaneously If one, or more, co-occurring issues is not recognized, outcomes will be sub-optimal If issues are misdiagnosed or not recognized, approaches will likely not be optimally effective

12 Risks of Not Accurately Recognizing an FASD Inaccurate diagnosis Mislabeling Inappropriate treatment Unemployment Psychiatric hospitalization Loss of family Homelessness Jail Death Suicide, accident, murder, untreated physical illness

13 D Dubovsky 2010 Substance Use Disorder FASD Mental Health Disorder

14 Substance Use Disorder Homeless Mental Health Disorder FASD D Dubovsky 2010

15 Likely Co-occurring DSM Disorders With FASD Attention-Deficit/Hyperactivity Disorder Schizophrenia Depression Bipolar disorder Substance use disorders

16 Likely Co-occurring DSM Disorders With FASD Sensory integration disorder Reactive Attachment Disorder Separation Anxiety Disorder Posttraumatic Stress Disorder Traumatic Brain Injury Risk for Borderline Personality Disorder Medical disorders (e.g., seizure disorder, heart abnormalities)

17 Possible Misdiagnoses for Individuals With an FASD ADHD Oppositional Defiant Disorder Conduct Disorder

18 Comparing FASD, ADHD and ODD (D Dubovsky 2002) Behavior Underlying cause for the behavior FASD ADHD ODD Does not complete tasks May or may not take in the information Cannot recall the information when needed Cannot remember what to do Takes in the information Can recall the information when needed Gets distracted Takes in the information Can recall the information when needed Chooses not to do what they are told Interventions for the behavior Provide one direction at a time Limit stimuli and provide cues Provide positive sense of control, limits, and consequences

19 Possible Misdiagnoses for Individuals With an FASD Adolescent depression Bipolar disorder Intermittent Explosive Disorder Autism Asperger s Syndrome Reactive Attachment Disorder Traumatic Brain Injury Antisocial Personality Disorder Borderline Personality Disorder

20 Comparing FASD, Adolescent Depression and Adolescent Bipolar Disorder D Dubovsky 2006 FASD Acting out, antisocial behavior Misreading social cues; modeling others; issues communicating thoughts and feelings Provide a mentor to model positive behaviors; utilize a lot of role playing; Adolescent Depression Acting out, antisocial behavior Depression Psychotherapy to address issues; protect from harm; medication (antidepressant) with careful monitoring Adolescent Bipolar Disorder Acting out, antisocial behavior Mania or hypomania Psychotherapy to address issues; protect from harm; medication (mood stabilizer)

21 Challenges for Professionals in Recognizing FASD Recognizing an FASD challenges the basic tenets of treatment and interactions with people Most professionals have been taught that people need to take responsibility for their actions and learn by experiencing the consequences of their actions People are in control of their behavior If a person says that she or he knows what to do and then does not do it, it is because she or he does not want to do it Enabling and fostering dependency are to be avoided in treatment A person has to learn to do things on her or his own because that s the real world

22 Challenges for Professionals in Recognizing FASD Because of the brain processing issues in FASD, these individuals do not tend to learn by experiencing the consequences of their actions Natural consequences are often ineffective and may put the person at risk of being homeless, in jail, or dead In order to improve outcomes for this population, the concepts of dependency and enabling as negative terms need to be rethought Getting someone to their appointment or filling out forms with them may improve their outcomes

23 Challenges for Professionals in Recognizing FASD Some staff in treatment settings are reluctant to talk with women about FASD as they are concerned about possible relapse How the information is presented and the support that is provided is essential In addressing FASD with women in treatment, we need to address issues of possible guilt and support the recognition that no one drinks during pregnancy to harm her child and that recognizing a possible FASD in oneself or one s child can improve outcomes as we can then focus on what the family needs for the best outcomes

24 How Do People Fail in Treatment? Don t follow through on treatment plans Don t take their medication as prescribed Don t follow-up on next steps Don t make required calls Don t set up appointments Don t get to their appointments Don t check in with their probation officer Don t go to meetings Don t stay sober Get in trouble with the law Their parents don t follow through on plans

25 Why Do People Fail in Treatment? Cannot keep track of 4 plans, each with 4 goals and 5 steps per goal Can t process more than one direction (or one step) at a time Cannot remember what they were supposed to do (whether it s a week, a day, or an hour after being told) Are not comfortable with making calls, etc.

26 Why Do People Fail in Treatment? Say that they know what they need to do and we take that at face value Go along with the crowd Take directions very literally Don t ask questions Don t want anyone to think there is anything wrong with them Feel overwhelmed with what they are expected to do Can t decide what the first step is

27 Why Do People Fail in Treatment? Do not follow the program Don t feel like it Feel others are trying to control them Don t have the support to do so Doesn t meet their needs Might have issues that interfere with their ability to follow through Might be misdiagnosed or have unrecognized co-occurring disorders

28 Issues That Might Interfere With the Ability to Succeed in Treatment Memory problems Language processing problems Especially verbal Problems with attention Self esteem issues

29 Issues That Might Interfere With the Ability to Succeed in Treatment Desire to belong Desire to fit in Inability to process multiple directions Literal thinking Doing exactly what they are told Difficulty with the sense of time

30 Learning Objectives: Examine the importance of effective residential treatment in the continuum of services for individuals with an FASD; Discuss why typical programming in residential treatment is not often effective for individuals with an FASD; Describe modifications to treatment approaches that can improve outcomes for individuals in treatment, their families, and the agencies that provide services for them.

31 Strategies for Modifying Residential Approaches Simplify rules and manuals for residents E.g., use photos and checklists Provide one direction or rule at a time Provide one to one support Connect the person with a positive mentor Model behaviors Model the range of affect Utilize a positive reinforcement system rather than a reward and consequence system

32 Strategies for Modifying Residential Approaches Do not use visits as a reward for good behavior Utilizing approaches that use more senses Role playing Use a lot of consistency and repetition Evaluate the use and effectiveness of medication Create chill out spaces Time ins rather than time outs Work with kin and significant others

33 Strategies for Modifying Residential Approaches Use supportive psychotherapy Develop adaptations that address: Fatigue Stress Slow processing Difficulty with verbal receptive language processing Difficulty with social communication

34 Why a Manual for Residential Treatment for Those with an FASD Manuals that have been developed for residential programs do not take into account the brain functioning in individuals with an FASD Residential programs often treat everyone the same How to earn points, stars, stickers, or levels What those points, stars, stickers, or levels mean

35 Why a Manual for Residential Treatment for Those with an FASD Approaches are based on the concept that people need to take responsibility for their actions and learn by experiencing the consequences of their actions This does not work for most people with an FASD Many manuals developed for residential programs are used as cookbooks to work with individuals

36 Why a Manual for Residential Treatment for Those with an FASD FASD is a spectrum of disorders with a variety of strengths and difficulties and how those are manifested A manual for individuals with an FASD has to be flexible in how interventions are provided and how behaviors are responded to

37 What a Manual for Residential Treatment for Those with an FASD Would Include Utilizing a true strengths based approach Strengths and abilities of individuals with an FASD Background information on FASD An understanding of the brain basis of FASD

38 What a Manual for Residential Treatment for Those with an FASD Would Include Information on how the brain damage in FASD impacts behaviors typically seen e.g., Working memory Stress and anxiety response Literal thinking Verbal receptive language processing difficulties Difficulty reading social cues Risk of abuse and trauma

39 What a Manual for Residential Treatment for Those with an FASD Would Include Discussion of misdiagnosis and cooccurrence in FASD Why an FASD as a co-occurring issue needs to be different than other co-occurring issues The notion that a manual cannot be used like a cookbook How to approach rules and regulations for a person with a possible FASD

40 What a Manual for Residential Treatment for Those with an FASD Would Include A process for developing an appropriate approach for an individual with an FASD Viewing each person as a true individual Asking what is causing this behavior as an essential initial step Asking what age behavior does this feel like? Developing a process for prioritizing interventions

41 What a Manual for Residential Treatment for Those with an FASD Would Include The recognition that improving outcomes for a person with an FASD improves outcomes for families, agencies, and systems How to identify a person with a possible FASD Modifying approaches can occur prior to diagnosis The need for a paradigm shift

42 Paradigm Shift We must move from viewing the individual as failing if s/he does not do well in a program to viewing the program as not providing what the individual needs in order to succeed. Dubovsky, 2000

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