IASSID 2 nd Asia Pacific Conference The I-CAN: Support Needed for Inclusion and Empowerment Samuel Arnold Vivienne Riches Trevor Parmenter Roger Stancliffe

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

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

How happy are you? In comparison to the happy times in your life, how happy were you in the past two weeks? 5 Very Happy 4 Happy 3 A Little Happy 2 A Little Unhappy 1 Unhappy 0 Very Unhappy Proxy Respondent

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? 5 Very Healthy 4 Healthy 3 A Little Healthy 2 A Little Sick 1 Sick 0 Very Sick

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.”

Health & Well Being Physical Health Mental & Emotional Health Behaviour of Concern Health & Support Services Activities & Participation Applying Knowledge, General Tasks & Demands Communication Self-care & Domestic Life Mobility Interpersonal Interactions & Relationships Life Long Learning Community, Social & Civic Life About Me, My Dreams & Aspirations, Current Life Situation, Support Network I-CAN v4.2 Domains My Goals

Individual Support Needs Report

Track Changes Compare Needs

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

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) What’s so different about assessing support needs instead of assessing functioning, health or adaptive behavior? Support Needs Assessment

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? Conceptual Flaws In popular support needs assessments (i.e. personal competence)

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 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!) Conceptual Flaws In popular support needs assessments

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

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 Predictive Validity And the young science of support needs

A paradigm shift occurred in 1992… A paradigm shift occurred in 1992… …restated in 2002

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

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

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

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

No longer person with (mild-moderate-severe-pervasive) Intellectual Disability -Floor?-

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

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

INTERMITTENTLIMITEDEXTENSIVEPERVASIVE TIME duration As needed Time limited occasionally ongoing Usually ongoing Possibly lifelong TIME Frequency Infrequent low occurrence Regular, anticipated, could be high frequency High rate, continuous, constant SETTINGS Few settings, typically one or two settings Across several settings, typically not all settings All or nearly all settings RESOURCES Professional/ Technological assistance Occasional consultation or discussion, ordinary appointment schedule, occasional monitoring Occasional contact, or time limited but frequent regular contact Regular, ongoing contact or monitoring by professionals typically at least weekly Constant contact and monitoring by professionals INTRUSIVENESS Predominately all natural supports, high degree of choice and autonomy Mixture of natural and service-based supports, lesser degree of choice and autonomy Predominately service-based supports, controlled by others 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,

1.Confusion of level of support need with duration of support need 2.Big overlaps and non-distinctive categories 3.Assumption that less need = natural supports and greater choice 4.I’m sure there are some others, but I want to tell you about some I-CAN ideas… Conceptual Flaws In the table I showed you in the last slide

None / No Formal Support: 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: 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: Moderate: Person needs several hours of direct support each day, in addition to support that is naturally available. Substantial: Substantial: Person needs direct support readily available 24 hours per day, in addition to support that is naturally available. Pervasive: Pervasive: Person needs the direct support of two or more people a few times daily, in addition to other substantial support needs.

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

Quality Codes Quality controls weren’t in place for the majority of data used in these statistics Quality Classification Rating Criteria Fail Scoring highly unreasonable. Poor Scoring inaccurate for several items, person may be rating problem rather than support, and/or description of support needs may be lacking. Scoring somewhat unreasonable. Average Scoring inaccurate for some items, person may be rating problem rather than support, and / or description of support needs may be lacking. Good Scoring accurate for majority of assessment, appropriate description of support needs or necessary information mostly given. Very Good Accurate scoring, good specific description of support needs / support activities. Generally an example of a fantastic report.

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?

Inter-Rater Reliability Of 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.

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.

Internal Consistency

Correlation of Domain Scores with Clinical Judgment

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

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

Correlations of Clinical Judgment with I-CAN Prediction Algorithm Good Data Good & Average Data Good, Average & Poor Data n=49n=114n=186

Where to 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? from here?

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)

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’

“You're not disabled by the disabilities you have, you are able by the abilities you have.”* Oscar Pistorius aka ‘Blade Runner’ ‘The Fastest Man on No Legs’* *Courtesy of wikipedia