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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