IASSID 2nd Asia Pacific Conference
The I-CAN: Support Needed
for Inclusion and
Empowerment
www.i-can.org.au
Samuel Arnold
Vivienne Riches
Trevor Parmenter
Roger Stancliffe
I-CAN v4.2
www.i-can.org.au
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?
Proxy
Respondent
5
Very Happy
4
Happy
3
A Little Happy
2
A Little Unhappy
1
Unhappy
0
Very Unhappy
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.”
I-CAN v4.2
Domains
About Me, My Dreams & Aspirations,
Current Life Situation, Support Network
Activities & Participation
Health & Well Being
Applying Knowledge, General Tasks &
Demands
Physical Health
Communication
Mental & Emotional Health
Self-care & Domestic Life
Mobility
Behaviour of Concern
Interpersonal Interactions & Relationships
Life Long Learning
Health & Support Services
Community, Social & Civic Life
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
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)
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”? (i.e. personal
competence)
• 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
• 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
What equity does a flawed Support
Needs Assessment give you?
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
• 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
Supports
Individual
Functioning
I-CAN is based on the WHO ICF framework
Health Condition
(disorder/disease)
Body
function&structure
(Impairment)
Activities
(Limitation)
Environmental
Factors
Participation
(Restriction)
Personal
Factors
The I-CAN Theoretical Model –
Mapping it out, v1.04
Person
Supports
Environment
Activities
Participation
Personal
Factors
Barriers Facilitators
Limitation Opportunity
Physical
Health
Mental Emotional
Health
Behavioural
Concerns
Attitudes
People (Family,
Friends, Community
Members, Staff, Health
Professionals),
Education, Technical
Aids, Equipment,
Advocacy, Industry,
Funding,
Transport
Built Environment,
Natural Environment
(pollution)
…
Technological
Society Culture
Political / Economic
Family / Friends
Historical
The I-CAN Theoretical Model –
‘We are all people’ version
Disablement
a human condition, not a category
The Human Experience
Person
Supports
(the supports continuum)
Environment
No longer person with
(mild-moderate-severe-pervasive)
Intellectual Disability
-Floor?http://wilderdom.com/intelligence/IQWhatScoresMean.html
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
Now,
Person with Intellectual Disability
… and
(limited, intermittent, extensive, pervasive)
Support needs??
TIME
duration
TIME
Frequency
SETTINGS
RESOURCES
Professional/
Technological
assistance
INTRUSIVENESS
INTERMITTENT
LIMITED
EXTENSIVE
PERVASIVE
As needed
Time limited
occasionally
ongoing
Usually ongoing
Possibly
lifelong
Infrequent low
occurrence
Regular, anticipated, could be high
frequency
High rate,
continuous,
constant
Few settings,
typically one or two
settings
Across several settings, typically not all
settings
All or nearly all
settings
Regular, ongoing
contact or
monitoring by
professionals
typically at least
weekly
Constant
contact and
monitoring by
professionals
Occasional
consultation or
discussion, ordinary
appointment
schedule, occasional
monitoring
Predominately all
natural supports, high
degree of
choice and autonomy
Occasional contact,
or time limited but
frequent regular
contact
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, 247-253
Conceptual Flaws
In the table I showed you in the last slide
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…
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.
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 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.
Fre que ncy of Quality Code s
80
70
60
50
40
30
20
10
0
Fail
Poor
Average
Good
Very Good
• Quality controls weren’t in place for the majority of data used in these statistics
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.
Frequency of Classification Levels
80
70
60
50
40
30
20
10
0
None
Mild
Moderate
Substantial
Pervasive
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
0.980
0.893
0.813
n=49
n=114
n=186
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?
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
www.i-can.org.au