Effective Practices for Supporting Individuals with Fetal Alcohol Spectrum Disorder (FASD)

1. Effective Practices for Supporting Individuals with Fetal Alcohol Spectrum Disorder (FASD) Presented by Nancy Hall on behalf of The Southern Network of Specialized Care

2. Presenter Information • Currently, Facilitator for The Southern Network of Specialized Care • Previously, FASD Community Development Facilitator representing 29 service delivery agencies, doctors and parents working in the Hamilton, Burlington, Niagara and H/N communities • Worked in social services for over 20 years as program manager supporting individuals with physical, developmental and mental health issues • Specializing in behavioural consultation and intervention • Member of the FASD Ontario Network of Expertise

3. The information presented here is, primarily, the results of a research paper produced by the Support and Intervention Working Group of the FASD Ontario Network of Expertise (FASD ONE) See www.fasdontario.ca to find this document, as well as documents dedicated to Respite Needs and Education. Towards a Provincial Strategy Advancing Effective Service Provider Practices in Fetal Alcohol Spectrum Disorder (FASD) 2010 Intervention and Support Working Group

4. Advancing Effective Service Provider Practices in Ontario Goals: • To determine what practices are most effective with individuals affected by FASD- resulted in a review of existing resources/literature • To determine if service providers in Ontario are using these practices- survey of the parents/caregivers of children with FASD in Ontario

5. Results • Eight primary effective practices were identified as critical in the successful support of this population; -Emphasis on early diagnosis -Training and education in FASD -A paradigm shift to a positive, strength-based approach -Structure, routine and supervision -Effective communication approaches -Awareness of and supports for Sensory Processing Disorders -Collaborative services -The need for life-long interdependent supports • 30 service providers in Ontario were identified as effective and all 30 confirmed their consistent support and/or use of these eight practices

6. Acknowledgements • Stephanie Jones, co-author of the booklet “Strategies Not Solutions”. Stephanie has acted as a case consultant and has been training professionals in both FASD and successful intervention techniques since 2002 • Ann Streissguth, 1997 • Dan Dubovsky from SAMHSA FASD Center for Excellence, Rockville MD • Nathan Ory, M.A. • Diane Malbin, MSW from FASCETS, Portland, Oregon

8. Fetal Alcohol Spectrum Disorder (FASD) FASD is an umbrella term referring to a range of disabilities resulting from prenatal exposure to alcohol. This includes: • FAS- Fetal Alcohol Syndrome- all three facial features, neurological damage • pFAS- Partial Fetal Alcohol Syndrome- 2 out of 3 features, neurological damage • ARND- Alcohol Related Neurodevelopmental Disorder- no facial features, neurological damage

9. FAS & pFAS> Collectively represent approx. 15% of those affected ARND>Represents 85+% of those affected- most will go unrecognized Current research tells us that at least 1 out of every 100 people is affected by prenatal exposure to alcohol- this is permanent brain damage FAS – only the tip of the iceberg

10. FASD: Impact on the Individual “Of all the substances of abuse (including marijuana, cocaine and heroin), alcohol produces, by far, the most serious neurobehavioural effects to the fetus” -IOM Report to Congress, 1996 FASD is the leading cause of disability and with 10% also having a developmental delay, it is also the leading cause of developmental delay.

11. Inconsistent performance Poor regulation of emotion- acts immature Poor memory-erratic (esp. short-term) Lack of abstract reasoning Failure to predict Do not understand cause and effect Fails to generalize Tendency to be oppositional or boastful with figures of authority Poor self-monitoring Poor sense of self Strong verbal expression Poor receptive language Short attention span-erratic/impulsive Difficulty with time concepts Difficulty with transitions Appears unmotivated/ lazy (cannot ‘walk the talk’) or manipulative Sensory sensitivities very prevalent- watch the environment FASD Behavioural Profile- Reflects Poor Executive and Adaptive Functioning

12. Secondary Disabilities • Mental health problems-*research may redefine this as a primary disability with 95% affected also having MH problems • Disrupted school experiences (68%) • Confined in prison/treatment centre (55%) • Trouble with the law (68%) • Inappropriate sexual behaviour (52%) • Alcohol and drug problems (30-35%) • Problems with employment (70%) and living independently (82%)

13. Effective Intervention and Support

14. Diagnosis • Diagnosis is critical for Effective Intervention • Research indicates that prognosis is best with diagnosis before the age of six • Accurate diagnosis assists caregivers to understand the disability and adjust intervention strategies- Typical behavioural supports tend to be ineffective • Appropriate support and understanding acts as a protective factor against secondary disabilities

15. Diagnosis (cont.) • To reduce unrealistic expectations-look more capable • Allows for life long planning for supports • This information may result in the prevention of other affected children (education, monitoring and support for mom) • Using a pre-screening tool to identify those potentially affected or “thinking FASD first…” in the absence of diagnostic services will reduce the occurrences of damage to the child through inappropriate interventions • Early recognition allows for better outcomes for both the individual and their family

16. Comparing FASD, ADHD and Oppositional Defiant DisorderDan Dubovsky, 2008

17. Beliefs Dictate Interventions • Behaviours are willful =Punish • Behaviours are symptoms =Support *Education and Training in FASD is critical to this understanding!

18. Behaviors, Misconceptions and Accurate Interpretation

19. Behaviors Misconceptions and Accurate Interpretation

20. Why Education and Training? • There is a prevalent lack of knowledge of FASD and its effects in both the general public and the medical field • In addition to the problem of no diagnosis we see high rates of misdiagnosis • Diagnosis is not enough…we must then understand the affects of FASD and what supports will result in success- typical behavioural approaches are not usually successful • Education of professionals is equally important to the education of family and of the individual themselves

21. From Seeing Person as: -Won’t -Bad -Lazy -Lies -Doesn’t Try -Mean -Doesn’t Care, shuts down -IS a problem -Acts Immature To understanding Person as: -Can’t -Frustrated, challenged -Tried Hard -Confabulates/ fills in -Exhausted/ can’t start -Defensive, hurt, abused -Cannot show feelings -HAS a problem -Is dysmature Paradigm Shifts- Changing understanding

22. Changing What we Do From: -Assuming -Punishing -High Expectations -Failure -Changing People -Trying Harder To: -Observing -Preventing Problems -Appropriate Expectations -Success -Changing Environments -Trying Differently

23. Paradigm Shift • UNABLE not unwilling to understand consequences • “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 • We are changing what WE do, not the person • “If they could get it for themselves, they wouldn’t need us!” Dubovsky 2007

24. The Big Picture- Paradigm Shift We know they aren’t doing it on purpose and they cannot understand consequences, so now what?? • Get Curious: When you seek to change the individual, ask yourself what is it that you also need to change. • Notice your own reactions • Catch yourself assuming • Observe disruptions in routine • Look at the environment

25. Think Can’t not Won’t- How Do We Adapt?

26. Start with Seeing Success Attendance is success Not having secondary disabilities is success Having a good day is more important than completing all assignments Learning how to self monitor and self regulate is just as important as learning math Giving the words is not giving the answers If he is successful in 1 class than why push for more?

27. Positive Strength Based Approach • Assessment includes determining strengths and weaknesses • Includes; -what they do well? -what do they like? -what are their best qualities? -what do you like about them? • A good program should have a ‘no eject’ policy because of brain based behaviour

28. Using a Strength Based Approach • Effective programs understand behaviors are the result of permanent brain damage- it is not see as willful • A positive approach; - moves from punishment to understanding and changing the environment or expectations -moves from trying to change symptoms to changing our reactions -has no negative carry-over from one day to the next -the inventory of strengths includes family and service provider strengths to determine strong supports -positive/strength based activities are never used as a treat or punishment resulting from good or bad behaviour

29. Strengths of People with FASD great speakers trusting don't give up easily caring friendly artistic musical creative working with hands

30. “Find something that the person does well (that is safe and legal) and arrange to have the person do that regardless of behaviour”

31. A Positive Outcome Means Talking about FASD • Talk about FASD – no shame • FASD is a disability • The ability to express their challenges and strengths will help them advocate for themselves in adulthood

32. Structure Supervision Support • Supervision is an absolute MUST. All the time- type/intensity dependent on functional level. • Structure keeps the person anchored in time and reduces anxiety. • Helps them think less-anticipate/predict more • Means doing the same thing, in the same order, in the same manner (with the same cues and prompts) and with the same expectations. These are the rules. • Make a plan of things he is good at/enjoys- for activities when there is none

33. Structure Supervision Support • Support means modeling, cueing, prompting and getting everyone on board with it. • What is modeling? -Think Aloud-give key self talk phrases -Follow through -Write out pro / con lists -Make the connection again later when they are ready

34. Support (continued) Focus on what they can do; ensure expectations are within their capacity. -If they fail to follow through on a task, shows signs of anxiety or frustration, some form of accommodation is required -Consider inconsistent performance on tasks Step in early to prevent escalation of problems-Poor problem solving skills means they have limited capacity to adapt their responses -Brain impairment means they cannot self-correct and will repeat mistakes (perseverate)

35. Structure Supervision Support

36. If there is Goingto be a Change • “I have an announcement, there is going to be a change. Sometimes that happens but I’m not going to have a big hairy fit about it.” • Show them what the expected behaviour looks like. • If time, change the calendar, write a post-it note. Organize for them.

37. Repeat after me: Prevention(Overall) • lock up your purse, cupboards and fridge. Colour code her things. Sew up/rip up pockets. Ask “Should we search your pockets?” • Be their external brain. If you know something bad is going to happen if…. Don’t let it happen. • Be ready. A birthday + long weekend + sharing your attention = disaster

38. Memory Strategies • Keep your routine!!! “Tacos on Tuesdays” “House cleaning on Saturdays” • Colour-code to a calendar or day timer • Schedule in locker • Post lists, charts, pictures- visual cues • Review, reteach, remind • “Give gentle reminders rather than nags and then watch him like a hawk” faslink

39. Communication Supports • Individuals with FASD tend to be very verbal with little content. • Receptive language is more impaired than expressive. This presents as a larger problem when we consider that successful outcomes are reliant on receptive language in many situations. Including; -parenting techniques -education -justice system and -treatment (motivational interviewing, cognitive behavioural therapy, group therapy and AA/NA groups) Dubovsky, 2008. • Consider the total communication approach. Pairing words with pictures, photos, gestures and signs.

40. Communication Supports • Match your language to that of the level of the person. Consider variations depending emotional state. • Use eye contact and exact repetition • 10 words or less, simple and clear • Come to the end of the thought and wait a few seconds • Avoid giving instructions in places where you can’t control the environment (the mall) • Body/facial expression exaggerated • State directions in positive terms (what they can do vs what they cannot do) • Check for concrete understanding

41. Communication Supports (cont.) • Refrain from the use of sarcasm and ensure individual has jokes explained to reduce misunderstanding and conflict-concrete • Always refer to persons in a group not ‘they’ or ‘them’- be concrete • Link one task to another to establish sequences i.e. the bus comes after breakfast • Use sign language if possible • Be careful with abstract words (‘get ready’) or generalize (‘watch’)

42. Abstract Language • Why?, Wait, Watch, Listen • Get ready, Clean up • Join, Get in line • Respond, Choose • Be responsible/appropriate • Do it later, Wait • Use your words, Ask for help • What are you feeling? • “When you’re done, take a cab home.”

43. Visual Cues Visual cues can be used to reduce the amount of verbal communication required. It can be used to communicate; • Physical Boundaries • Rules • Personal Routines • Schedules • Anger Management Plans • Etc.

44. Pictorial Cueing

45. Pictorial/Visual Cueing • When can we stop using cueing? • When can we stop using pictures? Sample…..

46. Communicating a Transition • Routine and Structure • Pictures on hand (wall, wallet, desk) • A Gesture • Marking on floors • Visual clock • Watch alarm • Other concrete object

47. Sensory Integration Dysfunction Individuals with SID have difficulty processing and interpreting sensory information resulting in over or under-stimulation and behaviours. Defensiveness: Includes impulsivity, self injury/aggression, avoid contact, picky eater, wears same or inside out clothing, dislikes face washing, hair brushing etc. Modulation: Includes distractibility, activity level extremes, difficulty with transitions and low tolerance levels

48. Sensory Integration Dysfunction (cont.) Registration: Includes acute awareness of noise/lights/sound/smells, lowered awareness of pain and temperature, tip toe walking, poor body awareness Integration: Includes hand preference delayed, poor eye-hand co-ordination and problems with motor planning (may have apraxia) **OT identification is vitally important as often behaviours are seen in all 4 areas with children affected

49. Sensory Integration Dysfunction Behaviours resulting from SID should cue us to determine the cause for behaviours rather than targeting the behaviour itself. To reduce the effects of SID it is important to Modify the Environment. This will; -Reduce Over Stimulation -Increase ability to attend -Increase prediction and ease of transition with posted schedules -Increase ability to self-regulate with boundaries identified and prepared ‘comfy corners’

50. Possible Environmental Modifications • Pale/ soft colours • Bookshelves turned so all information is not ‘in your face’ • Limit number of pictures • Reduce smells/ sounds in the environment (tennis balls on chair legs) • Minimalist environment-less knick-knacks, less furniture, less choices **When unsure what will help…ASK!