Post on 27-Sep-2020
Dr Paul WhiteClinical Director
Specialist Disability Services Assessment & Outreach Team
Cognitive disability, the NDIS
& the Guddi Tool
Jennifer Cullen(1,4); Clare Townsend (1,3, 4); Paul White (2)
(1) Synapse; (2) Department of Communities (Disability Services), Specialist Disability Services Assessment & Outreach Team; (3) Griffith University; (4) James Cook University.
1. Indigenous Australians & Neurocognitive Disability
2. The NDIS
3. The Guddi Project
4. The Guddi Assessment
Tool
NEUROCOGNITIVE DISABILITY
Any type of brain damage or neurological disruption occurring (after birth) causing partial or functional disability or psychosocial maladjustment
Impairments may be temporary or permanent • Accidents• Stroke• Lack of oxygen • Trauma• Vascular disease• Alzheimer's disease • Infection• FASD. • Korsakoff's psychosis
NCD is often unrecognized & poorly understood.
Lack of culturally appropriate & safe assessment tools.
Lack of appropriate responses > over-representation in A&E, MH, prisons & criminal justice settings.
DOMAINS: Mental Functions
BLOCK CATEGORY ASSESSMENT ITEM
Global mental functions Consciousness All
Orientation 2A, 2B, 2C
Intellectual functions All
Global psychosocial
functions
WHODAS: D4 & D6
Temperament & personality Observations
Energy & drive KICA Depression
Specific mental functions Attention 8C
Memory 7A, 7B, 7C
Emotional KICA Depression, PTSD
Thought functions 6A, 6B, 6C, 6D, 6E, 6F
Higher-level cognitive 8A, 8B
Language 3A, 3B, 3C, 4A, 4B, 4C, 5
Experience of self & time 2A, 2B, 2C
Alcohol exposed Unexposed
Abnormal facial features 17 percent 1 percent
Delayed growth 27 percent 13 percent
Cognitive delays
(including intellectual)35 percent 6 percent
Language delays 42 percent 24 percent
Hyperactivity 27 percent 2 percent
Aros S et al. (2006). Prospective identification of pregnant women drinking
four or more standard drinks (> or = 48 g) of alcohol per day. Subst Use
Misuse, 41(2):183-197
Comparison
Guide to Dx of FASD
http://www.apsu.org.au/assets/Uploads/20160505-rep-australian-guide-to-diagnosis-of-fasd.pdf
Google “Australian Guide to diagnosis of FASD”
Fetal Alcohol Spectrum Disorder
Prevalence
General Population (U.S.): 5% (FASD) [May, et al., 2014]Adoptees/Foster System: 6% (FAS) and 17% (FASD)[Lange et al., 2013]Juvenile Justice (age 12-18): 23%(FASD) [Fast, Conry, Loock, 1999]Adult Criminal Justice (age 18-30): ~ 25% [MacPherson et al., 2011]
Fetal Alcohol Spectrum DisorderPrevalence in greater Brisbane
Population 2,310,000 (ABS June 2015)
Prevalence 2% = 46,200
Prevalence 5% = 115,000
Comparison
- Type 2 Diabetes 4% = 92,400
- Autism spectrum disorders 1% = 23,100
- Childhood cancer 618/year Australia wide
(Ref: Alan)
Fetal Alcohol Spectrum Disorder
Extrapolating across Australia
Australian population - 23.13M (2015,ABS)
5% prevalence - 1.15M
2% prevalence - 462,000
Juvenile Justice in WA
Banksia Hill Project
Results 1 in 3 children in detention are on the FA spectrum
(Carol Bower 2017)
Cultural and Contextual Issues
NDIS Systems of Access & Eligibility Assessment
Problems of Accessing NDIS Problems meeting Eligibility & Information Provision Requirements
Assessment issues: medical, psychiatric or psychological examination
• Insight & understanding about the NDIS
• Organizational ability to access
• English as a 2nd/3rd
language• Language of disability
Modes of access e.g. • Communications • Access Checklist
May not have been assessed.Accessing prior assessments: organizational skills,memory retention Reliable administrative and recording systems. Having IDHaving language & confidence to negotiate the system to obtain information.
• Organizational skills to attend
• Fear• Lack of culturally
appropriate & meaningful assessment tools;
• Lack of trained, culturally safe professionals particularly in R & R.
• Incapacity to meetassessment costs16
The Guddi Project13 month study, commenced Nov 2014
Partners: Anglicare; Department of Communities, Child Safety & Disabilities; UQ; JCU;
Aims: Culturally safe & & appropriate point prevalence study
• Establish & describe the level, nature & experience of neurocognitive disability amongst a cohort of homeless Indigenous people in Cairns;
• Offer a comprehensive health & mental health assessments, follow up & engagement with health service providers.
• Inform participants about their eligibility to access existing & future services;
• Support participants to access existing & future services;
• ‘Yarn up’ the Indigenous community & existing service system about neurocognitive disability, service needs & culturally appropriate & acceptable service models
19
30 Sept, 2015 Total Female Male
Recruited 80
Clinical Assessment 60 28 Indigenous 15 Indigenous
5 Non-
Indigenous
12 Non-
Indigenous
Qualitative data
collection
40 12 Indigenous 11 Indigenous
5 Non-
Indigenous
12 Non-
Indigenous
Faecal samples 26
Results
High scores on the WHODAS for overall disability;
High levels of head injury
37/60 had a neurocognitive disability;
11 Diabetes (8 poorly controlled) (Indigenous)
7 Ischaemic heart disease (Mixed)
3 hypertension (Mixed)
3 Acute pneumonia (Indigenous)
? TB (Indigenous)
7 acutely psychotic20
GUDDI COGNITIVE ASSESSMENT TOOL
These questions provide a way of engaging with Indigenous people* who may have a
disability. We do this with the blessing of many Traditional Owners, Elders, and
Indigenous people. We recognise the manifold effects of colonisation, the Stolen
Generation and attempted genocide. These questions are part of a story about a
person. They are not that whole story. Everyone is different. One shoe does not fit all.
We have written and yarned about “Proper Way’. This is a reflective, gradual and
considered process. Indigenous people often offer a much more sophisticated
approach to concepts such as time, linearity and relationships affecting objects and
people than non-Indigenous people have encountered. Age, years of schooling,
occupation and cultural issues impact on performance. It is necessary to enquire
about the persons literary and numeracy. Culturally Standard Australian English is
often individuals’ first or second language.
There are other cognitive screens available to identify specific cognitive disorders. It
owes much to the MMSE, and especially the HANNA and KICA. Hugo (2012) was also
helpful. Most professionals have their own particular items and tools that suit them
and the contexts in which they work. The reliability and validity of these items and
tests are often unclear. This tool has construct validity. Administering tests and
interpreting the results within context is reliant on the skills, abilities and cultural
competency of the practitioner.
Each basic cognitive function has its own group of tests. They can often be localised to
particular areas or networks of the brain. Understanding those different patterns of
mental working and capacities can help support the person. This scale is an iterative
process. Items may be added or removed. The professional involved should be aware
that this might affect the results of the assessment.
*Recognise that Indigenous refers to Aboriginal and/or Torres Strait Islander people
Administration fields
Interviewer (name of person writing responses):
Interviewer role (e.g. health worker):
Interview Date: Location (e.g. health clinic)
Postcode:
Start Time: Finish Time:
Interviewee Name: Country of Birth:
Who is your mob?:
Disability (or diagnosis):
Date of birth:
Sex:
Aboriginal and/or Torres Strait
Islander: Yes or No
Communication supports (who - if
anyone - is helping the interviewee
answer questions?):
No informant is present
Support person is present
Name of support person:
________________________________________
Relationship to interviewee:
________________________________________
Introduction
Instructions for interviewer: Go through the following points with the interviewee before beginning
the questionnaire.
- Thank the interviewee for taking the time to meet
- Interviewer introduction, including: name, job title, description of work, and the length of time
with organisation
- Describe the purpose of the interview:
o To find out a little bit of information about you (interviewee)
o How you (interviewee) are able to manage with various parts of your life
o What things you find easy and what things you find hard
- Some of the questions are personal and you do not have to answer any question that you do
not want to answer
- If you need a break as we go along, that is ok. Just let me know, and I will stop between tasks
for a break.
- Some of the questions may be difficult; you (interviewee) can ask me (interviewer) any
questions you may have. I (interviewer) am happy to provide any further explanation about
questions – please feel free to ask me any questions that you have as the interview goes along
- I (interviewer) will write down responses as we go along with the interview
- I (the interviewer), will need a comb, a cup, and a pen.
Section 1: Background Information
✓ Support person can help Interviewer script: “These next few questions are about your school, living and work history” Instructions for interviewer: Ask the following questions and fill in the correct option from those listed below. If the interviewee is having trouble providing a response, prompt the interviewee with the response options. 1A. What is the highest education (schooling) that you have obtained?
Left school, no qualifications Completed secondary school. If so, what year? ___________ Trade certification/apprenticeship. If so, what year? __________ Diploma (undergraduate diploma, associate diploma etc.) If so, what year? ________ Undergraduate University Degree If so, what year? ________ Masters degree/Doctorate If so, what year? ________ Other. Please indicate ______________________________
1B. Where have you been living during the last month? (tick all that are appropriate)
Homeless/no fixed address Crisis shelter Hostel Hospital or Rehabilitation Unit Nursing home, Aged care home, Lodge Supported housing Rented home Self Other Own home Family home Caravan park Town Camp/Aboriginal or Torres Community Prison Other please specify _____________________________
1C. Where have you lived for more than a week during the last 12 months? (tick all that are appropriate)
Homeless/no fixed address Crisis shelter or rooming house Hostel Institution: hospital Institution: nursing home, lodge etc. Group home Supported housing Rented home Self Other Own home Family home Caravan park Town Camp/Aboriginal or Torres Community Prison Other please specify ______________________________
1D. Do you have a job at present?
No job at present, but looking for work No job at present and not looking for work (not in labour force) Employment outside the home, full-time job Employment outside the home, part-time job Housework Studying Retired Not known Volunteering Other ___________________________________________
1E. Have you had any jobs during the past 12 months?
No job during the past 12 months, but looking for work No job during the past 12 months and not looking for work (not in labour force) Employment outside the home, full-time job Employment outside the home, part-time job Housework Studying Retired Not known Volunteering Other ___________________________________________
1F. Have you received any of the following pensions or payments in the past month?
Age pension Service pension Disability support/invalid pension Widow’s pension Carer’s pension Sole parent’s pension Sickness allowance/benefit Newstart/job search/mature age allowance Unemployed benefit Superannuation Insurance (e.g., TAC, workcover, income protection) Not known N/A Other ________________________________________
1G. In the past 12 months, have you attended a hospital (e.g. an emergency department)?
Yes No
1H. If yes, How many times?
_______________________________________________
1I. In the past 12 months, have you attended a Doctor/GP?
Yes No
1K. What was the reason(s) for your visits? 1L. Have you ever been hit on the head and knocked out (loss of consciousness or blacked out)?
Yes 1M. How many times __________ No
Section 2: Thinking Skills
✓ Informants can’t help with any of the items from 1 to 11
2. Orientation
Interviewer script: “These next three questions are about you and where we are”
2A. What is your name?
0 1
2B. What community/place are we in right now?
0 1
2C. What time of year/season is it now?
0 1
/3
For section 3 you will need four items: a cup, comb, keys and coin.
3. Naming
Bring out the three objects listed above and ask the interviewee to name each item. Interviewer to
provide an example item: bring out a cup and say “please tell me the name of this item”. If they don’t
say its name, then teach them how to answer “This is a cup”. If necessary, you may use other items.
3A. comb
0 1
3B. Keys
0 1
3C. Coin
0 1
/3
Interviewer script: “Now I am going to hide these items and I want you to try to remember where I put them. Later, I will ask you where I have put the items”
Hide each item while clearly showing the interviewee where each item has been hidden.
2. Verbal comprehension
Go through the following instructions and indicate the interviewees comprehension of each instruction
out of one.
3A. Point to a knuckle on your own hand
0 1
3B. Point to your eyebrow then to your mouth
0 1
3C. First point to the sky and then point to the ground
0 1
/3
3. Verbal fluency
Ask the question: How many animals can you name? Write down the responses provided by the
interviewee below. Allow one minute (1) for the interviewee to provide as many responses as possible.
0 animals: 0
1-4 animals: 1
5-8 animals: 2
9 animals or more: 3
/3
4. Thinking
Before each set of items state, ‘how are X and Y alike?’e.g., “How are the sun and the moon alike?”
Answer: “They are both in the sky.”
Kangaroo and Dog 0 1
Spear and Gun
0 1
Red and Yellow 0 1
Song and Picture 0 1
7. Recall
Remember the three items that we talked about earlier that we taking to the shop: What were they and where did I put them.
7A. Comb 0 1
7B. Keys
0 1
7C. Coin 0 1
/3
8. Executive function
8A. Copy Shape.
Hand the person a pencil and a blank sheet of paper.
Interviewer script: “Now I am going to ask you to copy this picture. Could you please draw this shape? You can use this piece of paper and pencil that I have provided.”
/1
Score 1 if a shape like the one provided has been drawn (i.e., 2 5-sided figures that intersect)
8B. Draw clock face
Interviewer script: “Draw a clock face showing all the numbers, and with the hands showing 10 minutes past 7 o’clock.”
A shape like a circle has been drawn as the clock contour 0 1
All numbers 1 to 12 (OR 12 markings) are drawn on the clockface 0 1
All 12 numbers (or Markings) are in the correct position 0 1
There are two or three clock hands drawn (pointing to any position) 0 1
Long hand is pointing at the number 2 (or that marking) 0 1
Small hand is pointing to the 7 0 1
/6
8C. Hand movement copy
Interviewer script: “For the next question I am going to ask you to copy my hand movements. Can you copy the hand movement that I am making right now?
Show the person this sequence: Palm down, palm up
Request that the interviewee copy the movement three times.
Interviewer script: “Now please copy the following hand movement 5 times”
Instructions for interviewer: Perform the following hand movements 5 times, counting them out aloud
and then request that the interviewee conduct the same movements.
If, 0 – 1 movements copied correctly (score of 0) If, 2 or more movements copied correctly (score of 1) If, all 5 movements copied correctly (score of 2)
/2
Section 3: Drugs and Alcohol
9a. Have you ever felt you ought to cut down on your drinking or drug use? Yes No
9b. Have people annoyed you by criticising your drinking or drug use? Yes No
9c. Have you felt bad or guilty about your drinking or drug use? Yes No
9d. Have you ever had a drink or used drugs first thing in the morning to steady your nerves or to get rid of a hangover (eye-opener)?
Yes No
Item responses are scored 0 for ‘No’ and 1 for ‘Yes’. A higher score being an indication of or alcohol or substance use problems. Total score of 2 or greater is considered clinically significant.
10. Depression
Interviewer script: “Now I am going to ask you how you have been feeling over the last week. (Give the interviewee the Cue Card). For each question, you can provide the response ‘never, sometimes, a lot, or all the time’.”
Instructions for interviewer: Provide a small cue card with the four response options for the
interviewee to select from. This cue card means that the interviewee does not need to be reminded of the
response options. If the interviewee has difficulty reading, then prompt the interviewee of each response
option following each question. After you have provided the cue card and clarified the response options,
read each question and tick the response indicated by the interviewee.
Question
Number
Question Response (circle the interviewee response)
Never Sometimes A lot All the
time
10A In the last week have you: felt
down, sad or no good?
0
1 2 3
10B Felt like not doing things that you
usually like doing? (things that
make you happy)
0
1 2 3
10C In the last week have you: had
trouble with getting to sleep,
staying asleep or sleeping too
much?
0
1 2 3
10D Felt more tired or slack, like
you’ve had no energy?
0
1 2 3
10E Been eating too much or eating
only a little bit?
0
1 2 3
10F Felt bad about yourself or felt
shamed that you have let
yourself or family down?
0
1 2 3
10G Had trouble paying attention or
concentrating on things?
0
1 2 3
10H In the last week: has anyone told
you that you are speaking or
moving too slowly or too fast?
0
1 2 3
10I Have you had thoughts that you
would be better off dead?
0
1 2 3
10J Have you thought of hurting
yourself?
0
1 2 3
10K Have you felt wild? (angry) 0
1 2 3
TOTAL SCORE FOR DEPRESSION
10L. Have these/this problem/s made it hard for you to do your work, do things at home or get along
with people? e.g cooking, looking after family
No
A little bit
A lot
Big lot
10. Psychosis
Interviewer script: “The next few questions are also about how you have been feeling. For each question, you can provide the response ‘yes or no’.”
Instructions for interviewer: Read through each question below and provide the response options if
required
Question
Number
Question Response
Yes No
11A Have you ever felt that something strange or was going
on? Something you can’t explain ?
1
0
11B Have you thought you had special powers that other
people haven’t got? Or you can do special things?
1
0
11C Have you ever had the feeling that people are too
interested in you?
1
0
11D Have you ever felt that another person or a creature or
animal are interfering or controlling you?
1
0
11E Have you ever heard or seen hallucinations? 1
0
11F Have you ever been told that you have schizophrenia? 1
0
TOTAL SCORE FOR PSYCHOSIS
10. Post-Traumatic Stress Disorder
Interviewer script: “The next few questions are also about how you have been feeling. For each question, you can provide the response ‘yes or no’.”
Instructions for interviewer: Read through each question below and provide the response options if
required
Question
Number
Question Response
Yes No
12A Have any of your experiences been life threatening? 1 0
12B Have you ever had any experience that was so awful that
you had nightmares about it or thought about it when
you did not want to?
1
0
12C When you were a child on a teenager were you ever
repeatedly hurt by someone you know?
1
0
12D When you were a child or teenager did you ever have any
unwanted sexual experiences?
1
0
12E Tried hard not to think about it or went out of your way
to avoid situations that reminded you of it?
1
0
12F Were constantly on guard, watchful, or easily frightened? 1
0
12G Felt numb or detached from others, activities or your
surroundings?
1
0
TOTAL
Notes:
10. Disability assessment survey (WHODAS12) ✓ Informant can help
Interviewer script: “The next few questions are also about how to manage parts of your life. The questions are about how difficult you have found various aspects of your life over the last month.”
Instructions for interviewer: Provide a small cue card with the five response options for the interviewee to select from. This cue card is made visible to the interviewee so that s/he does not need to be reminded of the response options. If the interviewee has difficulty reading, then prompt the interviewee of each response option following each question. After you have provided the cue card and clarified the response options, read each question and tick the response indicated by the interviewee.
Question
Number
Question (In the last 30 days
how much difficulty did you
have…)
Response (circle the interviewee response)
None Mild Moderate Severe Extreme/
can not
do
13A Standing for long periods such
as 30 minutes?
0 1 2 3 4
13B Taking care of your household
responsibilities?
0 1 2 3 4
13C Learning a new task, for
example, learning how to get to
a new place?
0 1 2 3 4
13D How much of a problem did
you have joining in community
activities (for example,
festivities, religious or other
activities) in the same way as
anyone else can?
0 1 2 3 4
13E How much have you been
emotionally affected by your
health problems?
0 1 2 3 4
13F Concentrating on doing
something for ten minutes?
0 1 2 3 4
13G Walking a long distance such as
a kilometre [or equivalent]?
0 1 2 3 4
13H Washing your whole body? 0 1 2 3 4
13I Getting dressed? 0 1 2 3 4
13J Dealing with people you do not
know?
0 1 2 3 4
13K Maintaining a friendship? 0 1 2 3 4
13L Your day-to-day work? (or
things you do during the day)
0 1 2 3 4
13M Your usual activities? 0 1 2 3 4
13N Communicating with people 0 1 2 3 4
TOTAL WHODAS SCORE
13O. Overall, in the past 30 days, how many days were these difficulties present? 13P. Overall, in the past month, how many days were these difficulties present?
Record number of days_____
13Q. In the past month, for how many days were you totally unable to carry out your usual activities or work because of any health condition?
Record number of days_____ 13R. In the past month, not counting the days that you were totally unable, for how many days did you cut back or reduce your usual activities or work because of any health condition?
Record number of days_____
Interviewer script: “Thank you very much for participating in this questionnaire. Your responses have been very helpful. Do you have any questions that you would like me to answer?”
Let’s look at the Guddi Assessment Tool
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