Understanding and Communicating with Assessment/Diagnosis Teams

1. Understanding and Communicating with Assessment/Diagnosis Teams Dr. Christine Lilley Registered Psychologist Sunny Hill Health Centre for Children clilley@cw.bc.ca

2. Topics • Context: What is the CDBC network and what is it trying to do? • Diagnostic issues: How are FASD and CDBCs diagnosed in practice? • Communication: Working towards a common language

3. CDBC=Complex Developmental Behavioural Conditions CDBC Network created in 2005 and still evolving

4. Goals of the Network • To make assessment services available ‘closer to home’ so that they are more accessible to families and better integrated with local resources • To increase the capacity to diagnose FASD in BC • To make in-depth multidisciplinary assessment available to a broader group of children

5. Organization

6. Organization

7. Organization

8. CanFASD The Canada Northwest FASD Partnership is a voluntary organization of 7 provinces and territories. Its goal is to coordinate efforts to address FASD. The Partnership funds the CanFASD Research Network, headed by Sterling Clarren. PHSA is the “Host Agency” for the CanFASD Research Network. On a practical basis, PHSA and CanFASD are independent but mutually supportive.

9. Referrals to CDBC Pediatrician referral required if available. If no pediatrician is available in a child’s community, referrals are accepted from family doctors or nurse practitioners.

10. Referral Criteria Children to be functioning significantly below average in 3 of: • Development and learning • Mental health and behaviour • Adaptive and social skills • Biomarkers a. Substance Exposure b. Dysmorphic Features c. Growth Retardation

11. Tier 3 vs. Tier 4 Referrals always go to the region first. Some cases may be bumped up to the Tier 4 level given degree of complexity – but we have found that this is difficult to define.

12. Current Assessment Pathways (under review) Current model is that almost all cases are seen by a multidisciplinary team. Almost all cases will receive pediatrics and psychology input, with some exceptions for children who have already had an extensive work-up in one of these areas. In practice, many cases also receive social work input. Speech and language therapy, occupational therapy, recreation therapy, and physiotherapy added to the team on an as needed basis.

13. Discussion of Assessment Pathways A ‘consultant model’ is under discussion in which the child would see a single professional first (pediatrician, psychiatrist or psychologist) and that professional would decide who else was needed.

14. Interactions with school-based assessment services Schools may or may not be asked to complete some initial assessment – e.g. intelligence, academic and adaptive testing. Any existing psycho-educational assessment reports from schools are reviewed to see if further psychology input is needed.

15. What’s different about CDBC assessments than school-based assessments? • Multidisciplinary with physician • For children over 6, psychology assessments are usually but not always more extensive -they often include assessment of memory, attention, and executive function

16. Assessment and Diagnosis Functional Assessment: The gathering of information from as many different sources as possible to get an accurate picture of a child’s strengths, weaknesses and needs Diagnosis: Taking all of the information from the assessment and using it to answer a question about whether a person has a specific disorder. There is always something a little arbitrary about diagnoses, since they require answering a yes or no question about something that probably exists on a continuum.

17. FASD Diagnosis Requires information about: • Growth • Face • Brain • Alcohol Exposure • Other Prenatal Risks • Other Postnatal Risks Plus information needed to rule out other disorders and make good recommendations

18. Diagnostic Criteria: Canadian Standards and Guidelines (2005)

19. Fetal Alcohol Syndrome (FAS) Children with this diagnosis have all three of the features associated with prenatal alcohol exposure – (1) growth impairment, (2) characteristic facial features, and (3) severe learning and behaviour problems. This is the only fetal alcohol spectrum diagnosis that can be made without a confirmed history of alcohol exposure, because it is unlikely that all three would occur together for any other reason.

20. Partial Fetal Alcohol Syndrome (pFAS) Children with this diagnosis have characteristic facial features AND severe learning and behaviour problems, as well as a confirmed history of alcohol exposure.

21. Alcohol Related Neurodevelopmental Disorder (ARND) Children with this diagnosis do not have growth impairment or the characteristic facial features of prenatal alcohol exposure but do have severe learning and behaviour problems, as well as a confirmed history of alcohol exposure. Children with this diagnosis may be just as disabled as children with the above two diagnoses. In fact, some evidence suggests that they have worse outcomes, probably because it is more difficult to get people to believe that their problems are real.

22. Fetal Alcohol Spectrum Disorders (FASD) A term for all three of the diagnoses related to prenatal alcohol exposure: Fetal Alcohol Syndrome, Partial Fetal Alcohol Syndrome, and Alcohol Related Neurodevelopmental Disorder.

23. ‘Near Miss’ Terminology The Canadian Standards and Guidelines are great at describing who is clearly on the FASD spectrum – they do not offer guidance about what to call the near misses – you may see terminology from a previous set of criteria in these cases

24. Static Encephalopathy This is a descriptive diagnosis and not a causal diagnosis. In plain English, it means a brain disorder that is not getting worse and not getting better. In this context, it is used to describe individuals who have a pattern of learning and behaviour problems that are severe enough and varied enough that experts would agree they are probably related to a problem in how the brain works. Children with all three of the FASD diagnoses are described as having Static Encephalopathy. However, the term is also used when a child or youth has the kind of learning and behaviour problems associated with FASD, but there is no confirmed prenatal alcohol exposure. In this case, they would be described as having Static Encephalopathy, Alcohol Exposure Unknown. Currently, the term Complex Developmental Behavioural Condition could also be used in these cases.

25. Neurobehavioural Disorder This is a descriptive diagnosis and not a causal diagnosis. It is used to describe individuals who have learning and behaviour problems that are less severe and/or less varied than those described as having Static Encephalopathy. In this case the experts would say that these problems are possibly related to a problem in how the brain works. Keep in mind that many children will get this description just because they are too young for formal testing of all aspects of learning and behaviour (we can do this testing with more confidence when they reach the age of 8 to 12). Young children with this description should still be considered at high risk for a diagnosis of fetal alcohol spectrum disorder when they are older.

26. Evaluating Brain Function in FASD Diagnosis There is no single FASD profile – probably due to differences in timing and amount of exposure, nutrition, genetics, other substances Instead of trying to find out “are these symptoms FASD-like?” we ask “are these problems severe and diverse enough to conclude that they are probably neurologically based?”

27. 8 Brain Domains • Sensory/Motor • Cognition • Communication • Academic Achievement • Memory • Executive Function • Attention/Activity Level • Adaptive Behaviour/Social Communication If available, imaging results showing differences in brain structure can count as a 9th area.

28. A domain is considered “impaired” when on a standardized measure: a. Scores are 2 standard deviations or more below the mean This equates to: -a percentile rank of 2nd or lower -a standard score of 70 or lower

29. A domain is considered “impaired” when on a standardized measure: or b. There is a discrepancy between subdomains, so rare as to exist in less than 3% of the population a. Verbal vs. nonverbal IQ b. Expressive vs. receptive language c. Verbal vs. visual memory

30. 1. Sensory/Motor a. Sensory processing -occupational therapist: history/questionnaire/observation Motor functioning -physician: history, qualitative observation and neurological exam -OT or PT: standardized assessment of fine and gross motor skills

31. 1. Sensory/Motor You are likely to see significant problems with sensory processing – this often manifests clinically as outbursts in noisy and busy environments or an aversion to such environments You are likely to see a variety of motor deficits with lots of written output problems

32. 2. Cognition a. Overall intelligence, verbal intelligence, nonverbal intelligence -standardized assessment by the psychologist -common measures: Wechsler scales – the WAIS-III, WISC-IV, WPPSI-III -a significant minority will have an intellectual disability; others will have even, average profiles; others will have highly uneven profiles, usually with visual-spatial skills better than verbal skills -IQ is not highly predictive of function

33. 3. Communication -standardized assessment by the speech and language pathologist a. Core or simple language: vocabulary, grammatical structures, etc. b. High level language: abstract reasoning, -story-telling, talking about other’s states of minds Language skills may be globally low, or, you may see relatively good simple and concrete language, but weak abstract language.

34. 4. Academic Achievement -standardized assessment by the psychologist plus review of school records: Reading, Writing, Math Academic skills may be relatively intact or may be very low; Math problems are very common; Those who have language problems are also likely to have poor reading comprehension.

35. 5. Memory -standardized assessment by the psychologist plus interview -Visual memory, Verbal memory -Encoding, retrieval, recognition Many have poor functional memory – however, you may see a variety of reasons for this. Some won’t be able to pay attention to what they’re supposed to learn. Some won’t be able to actively search their memory, but can recognize info in a multiple choice framework. Those with language problems may have better visual than verbal memory.

36. 6. Executive Function A set of high-level thinking skills responsible for organizing and directing the brain’s activities in order to meet long-term goals Difficult to assess – use a combination of standardized testing, parent/teacher report, observation, and history -Working Memory (the ability to hold information in mind while thinking), Inhibition, Shifting, Planning

37. 7. Attention and Activity Level A sensitive indicator Some standardized testing may be possible, but most crucial information is probably parent and teacher report on formal questionnaires Many children and youth seen in the system already have an ADHD diagnosis – if it is considered ‘trustworthy’ then that alone may constitute evidence of impairment

38. 8. Adaptive Behaviour/Social Communication Tests in many of the other areas are intended to measure what the child can do under the best possible circumstances; Adaptive and social communication both measure what the child does do in their own environments Adaptive behaviour is measured by parent/teacher report Common measures: Vineland, ABAS Time, money, safety, social vulnerability are key areas Adaptive behaviour is often very low in this population, even when intelligence is average

39. A “Standard” Set of Tests Developed through clinician consensus by the Canada Northwest FASD Research Partnership Suggested but not required – clinical concerns may dictate the use of other tests in a certain proportion of cases e.g. ESL, very low functioning, sensory or motor impairments

40. Test Protocol for Ages 8 to 16: Direct Tests Cognition -WISC-IV Academic Achievement -WIAT-II, TOWL-3 Memory -WRAML2 Executive Function -diverse set of subtests from DKEFS, Rey Complex Figure, etc.

41. Test Protocol for Ages 8 to 16: Interviews and Rating Scales Executive Function -BRIEF Attention/ADHD -BASC-2 Adaptive Behaviour -Vineland or ABAS

42. Clinical Judgment In areas where standardized measurements are not available, a clinical judgment of “significant dysfunction” is made, taking into consideration that important variables, including the child’s age, mental health factors, socioeconomic factors and disrupted family or home environments may affect development but do not indicate brain damage.

43. Young Children Not all of the 8 domains can be assessed in preschool or even early elementary aged children. We may need to rely on clinical judgment to supplement test scores, or defer a final diagnosis if unsure.

44. Complex Developmental and Behavioural Conditions (CDBC) Originally, a term used in BC to describe the children seen by the CDBC network of developmental clinics. This was intended to describe children who have difficulty in multiple areas of functioning, whether or not they have prenatal alcohol exposure. It is now explicitly mentioned in the definition of a Chronic Health Impairment, but the term itself has no formal definition.

45. Complex Developmental Behavioural Conditions In practice, it is often interpreted as either 3 or more brain domains impaired OR medical diagnosis with functional impairment.

46. Chronic Health Designation Designation under this category is ultimately the school district’s decision but you will need the information that our network provides. Requires: (1) a ‘health’ diagnosis, which may include FASD or CDBC, and (2) functional disability in 2 of: -social-emotional functioning -communication -physical functioning -self-determination/independence -academic/intellectual functioning

47. Functional Impairment We do feel that it’s appropriate for us to comment on functional impairment in the five domains, since our assessments cover these areas. However, note that the official definition of impairment in these areas references classroom performance, not standardized tests.

48. Chronic Health Impairments other than FASD Be aware that physicians may be unable to give yes/no answers to questions concerning genetic or neurological diagnoses. If you have a student with functional impairment but do not feel you have enough clear information about whether he has a CDBC or other medical diagnosis, it is appropriate for you to contact the assessment professionals with parental consent.

49. Chronic Health Designation “Given Little Johnny’s diagnosis of FASD/CDBC and its impact on his education in the areas of (social-emotional functioning, communication, physical functioning, self-determination/independence, academic/intellectual functioning), the school district is encouraged to review Little Johnny’s file to determine whether he meets criteria for a Chronic Health Impairment.”

50. Issues of Privacy and Confidentiality Ethical codes binding health professionals emphasize confidentiality and informed consent. We ask for consent to release information after families have heard the diagnosis. Ideally, professionals talk to families about the benefits of releasing information to schools. Most families are comfortable releasing diagnostic information to schools. However, a few are not, and we feel that decision should be respected.