I-CAN: Instrument for Inclusion & Empowerment Support

1. The I-CAN: Support Needed for Inclusion and Empowerment IASSID 2nd Asia Pacific Conference www.i-can.org.au Samuel Arnold Vivienne Riches Trevor Parmenter Roger Stancliffe

2. www.i-can.org.au I CAN DO IT! I-CAN v4.2 Samuel Arnold Vivienne Riches Trevor Parmenter Roger Stancliffe Gwynnyth Llewellyn Jeff Chan Gabrielle Hindmarsh

3. Acknowledgements Aussies: Vivienne Riches, Trevor Parmenter, Samuel Arnold, Roger Stancliffe, Gwynnyth Llewellyn, Keith McVilly, Jeffrey Chan, Gabrielle Hindmarsh, Julie Pryor, Marie Cameron, Jennifer Hennessy, Tony Harman, Rachel Dickson (and many others) Conceptual underpinnings… POMs: Helen Sanderson, Edwin Jones, David Felce, Sandy Toogood, Jim Mansell and colleagues Yanks: John O’Brien, Marc Gold, Michael Smull, AAIDD WHO ICF

4. How happy are you? In comparison to the happy times in your life, how happy were you in the past two weeks? Proxy Respondent

5. How healthy do you feel? In comparison to the times in you life when you felt healthiest, how healthy have you felt in the past two weeks?

6. .98

7. What is the I-CAN? The Instrument for the Classification and Assessment of Support Needs (I-CAN) “a support needs assessment designed to assess and guide support delivery for people with a disability including mental illness. It provides a support services and family friendly holistic assessment, conceptually based upon the internationally recognized WHO ICF framework.”

9. I-CAN v4.2 Domains About Me, My Dreams & Aspirations, Current Life Situation, Support Network My Goals

10. Individual Support Needs Report

13. Track Changes Compare Needs

14. *Thanks to Marie Cameron of HISA and Royal Rehab, and to Jennifer Hennessy, Royal Rehab, for their crucial support

15. Support Needs Assessment What’s so different about assessing support needs instead of assessing functioning, health or adaptive behavior? • The questions we used to ask were: • Can you count change? Can you walk? • Now we are asking: • How much support do you need to go to the shops? Do you need support to get around? (No, I use my electric wheelchair, just occasional roadside assistance from NRMA)

16. Conceptual Flaws In popular support needs assessments • Skills / Adaptive Behaviour assessments that call themselves support needs assessment • Assessments that ask “How much support do you need even if you don’t need that support”? • Assessments that are primarily focused on $$ • Failure to integrate into PCP despite claims to do so – how is a quantitative number 0 to 10 going to help me achieve my dreams? (i.e. personal competence)

17. Conceptual Flaws In popular support needs assessments • Illogical Likert scales • Limited range of applicability to other / multiple disabilities • Don’t take into account different levels of need in different environments • Based in traditional paradigms • How much group support do you need? • Support = Formal supports • Do this assessment then we will know what is best for you

18. Conceptual Flaws In popular support needs assessments • Simplistic addition of scores • If I need constant supervision because of Behaviour of Concern (BoC) … then the level of support I need is constant supervision • Assumption that support needs is a simple, one-way linear construct, not dynamic or categorical in nature. • If I live in a community group home with 24 hour support, then I receive 24 hour support (whether I like it or not!)

19. Conceptual Flaws • What equity does a flawed Support Needs Assessment give you?

20. Predictive Validity And the young science of support needs • When no one gold standard has been set to compare against, we have tried comparing support needs scores with: • Adaptive Behaviour Scores • Historical funding / support arrangements • DOORS Wyoming • Direct Observation / recording of support hours • Clinical Judgment

21. A paradigm shift occurred in 1992… • …restated in 2002

22. The AAIDD 2002 Theoretical Model of Intellectual Disability I. Intellectual Abilities II. Adaptive Behaviour III. Participation, Interactions, Social Roles Individual Functioning Supports IV. Health & Etiology V. Context

23. Body function&structure(Impairment) Activities (Limitation) Participation (Restriction) Environmental Factors Personal Factors I-CAN is based on the WHO ICF framework Health Condition (disorder/disease)

24. The I-CAN Theoretical Model – Mapping it out, v1.04 Person Environment Supports Activities Participation Barriers Facilitators Limitation Opportunity Attitudes Society Culture Built Environment, Natural Environment (pollution) Political / Economic Family / Friends Technological Historical Personal Factors People (Family, Friends, Community Members, Staff, Health Professionals), Education, Technical Aids, Equipment, Advocacy, Industry, Funding, Transport … Physical Health Mental Emotional Health Behavioural Concerns

25. The I-CAN Theoretical Model – ‘We are all people’ version Disablement a human condition, not a category The Human Experience Supports Environment Person (the supports continuum)

26. No longer person with • (mild-moderate-severe-pervasive) • Intellectual Disability -Floor?- http://wilderdom.com/intelligence/IQWhatScoresMean.html

27. Support Needs – Redefining our definition of Disability and Intellectual Disability • Diagnosis of Intellectual Disability requires • 1. IQ Assessment • 2. Adaptive Behavior Assessment • 3. Support Needs Assessment

28. Now, Person with Intellectual Disability … and (limited, intermittent, extensive, pervasive) Support needs??

29. The AAIDD "ILEP" Classification Luckasson, R., Schalock, R.L., Snell, M.E., & Spitalnik, D.M. (1996). The 1992 AAMR Definition and Preschool Children: Response from the Committee on Terminology and Classification. Mental Retardation, August, 247-253

30. Conceptual Flaws In the table I showed you in the last slide • Confusion of level of support need with duration of support need • Big overlaps and non-distinctive categories • Assumption that less need = natural supports and greater choice • I’m sure there are some others, but I want to tell you about some I-CAN ideas…

32. None / No Formal Support:No support needed in addition to the support that naturally exists for the average person in the person’s community. Mild:Person only needs up to drop in support once, twice or a few times daily, or occasional supervision, physical support or mentoring, in addition to support that is naturally available. Moderate:Person needs several hours of direct support each day, in addition to support that is naturally available. Substantial:Person needs direct support readily available 24 hours per day, in addition to support that is naturally available. Pervasive:Person needs the direct support of two or more people a few times daily, in addition to other substantial support needs.

33. Method Data de-identified by web application and then de-identified by admin assistant • Reports read and coded for: • Quality • AAIDD and I-CAN Support Level Classifications • Statistics calculated so far: • Internal Consistency (Cronbach) • Domain Correlations with Clinical Judgment (Spearman) • Clinical Judgment vs. I-CAN Prediction Algorithm

34. Quality Codes • Quality controls weren’t in place for the majority of data used in these statistics

35. Quality Control and Support Needs Assessment • A proportion of ‘Poor’ and ‘Failed’ quality reports due to: • Initially poor training – tried to squeeze everything into half a day! Now more practical examples, role plays, and philosophy included in training, and ideally follow-up mentoring / support groups. • Several changes from V4.0 -> V4.1 -> V4.2. Several improvements and simplifications. E.g. addition of graphics to scoring scales. • No limit set on required qualifications of Facilitators – Direct Support Professionals generally know the person best, but may or may not have the necessary skills to do a good interview / assessment / report. • Quality control of Facilitators – trainee Facilitators have to return a completed report to be checked for accuracy and positive perspective. Only as qualitative data is collected auditing is made possible. • Therefore: • Need good training • Need to audit accuracy of Facilitators – need qualitative or other data to do this • Question – How accurately are other support needs assessments being completed?

36. Inter-Rater ReliabilityOf Clinical Judgment • n=12 reports • Coded by two separate registered psychologists from the project team. • 100% agreement on I-CAN classification levels • 92% agreement of AAIDD classification levels. • Due to highly positive results and time constraints (the Singapore deadline!) no further checks of clinical coding reliability yet completed.

37. Sample Characteristics • Mostly people coming from NGO formal support services for people with intellectual and / or physical disability, some institutional settings, hence higher proportion of pervasive and substantial needs than would be expected. • Some people with primary Mental Health diagnosis from a Mental Health service. • A few people from smaller services / the NSW DDHU clinic.

38. Internal Consistency

39. Correlation of Domain Scores with Clinical Judgment

40. Constructing an I-CAN Logic Based Prediction Algorithm(First Draft) Step 1: Match all pervasive records - At least 1 item that needs pervasive (2 on 1) support Scores are above the mild cutoff Step 2: Match all mild records - Total raw score < 100

41. Constructing an I-CAN Logic Based Prediction Algorithm(First Draft) • Step 3: • Sort the Substantial from the Moderate records (the hard bit) • Weight the frequency of ‘Constant’, ‘Daily’ or ‘Weekly’ support needs: • ‘Constant Extensive’ x 5 • ‘Constant Moderate’ x 3 • ‘Constant Minor’ x2 • ‘Daily Extensive’ x 3 • ‘Daily Moderate’ x 2 etc. • + Do you need Wakeovers, Sleepovers or no night support x 4 • Hours you can go unsupervised x 2. • = Split into two groups based on this number

42. .98

43. Correlations of Clinical Judgment with I-CAN Prediction Algorithm

44. Where to from here? • I-CAN v5!! Based on “People, the Support they Need, and the Environment” that they live in model. • Expanded document storage / e-health database functionality. Practical / easy online database systems that make services happy and run better. • More data, further refinement and testing of online prediction algorithm. • Factor Analysis, data mining and other fancy statistics. • Brief version of I-CAN 4.2 being trialed. • Implement I-CAN within a true Person Centered / Individual Funding / Supports Paradigm. • Influence the next definition of Intellectual Disability?

45. An I can statement • Instead of writing ‘Bob can’t count change’ (an I can’t statement) • Simply try ‘Bob can use a dollar more strategy to make minor purchases’ I-can’t: (name) cant (do this) I-can: (name) with (type of) support can (do this)

46. Let’s turn those I can’t statements upside down! • ‘John can’t tie shoelaces’ • ‘Judy can’t catch the bus unless she has been on it before’ • ‘Robert can’t dress himself’

47. “You're not disabled by the disabilities you have, you are able by the abilities you have.”* I Can do it! Oscar Pistorius www.i-can.org.au aka ‘Blade Runner’ ‘The Fastest Man on No Legs’* *Courtesy of wikipedia