New assessment tools for people with IntellectualDisabilities:APC Meeting

Dr Karen Dodd & Dr Zillah Webb

March 2014

Summary

sHALO

• Surrey and Hampshire Assessment for Living with Others

BADS-ID

• Behavioural Assessment of DisExecutive Syndrome – Intellectual Disabilities

MEP

• Measure of Everyday Planning

HALO to sHALO

Devised by Shackleton- Bailey, Pidcock and Hampshire social services, 1980 &1982)

10 main sections: self-care, domestic, community living, skills, communication,personality and social adjustment, close personal relations, use of leisure, health/physical disability, group membership and employment.

HALO is a residential assessment with three main aims:

• To help come to decisions about a client's future home needs.

• To help make decisions about a clients teaching needs

• To help service managers to plan residential resources

Issues with HALO

Dated – 33 years old

Items needed updating

Services / support needs changing

Scoring needed updating

Tracked down Mike Shackleton Bailey and got agreement from him and Hampshire Social Services to take over its development.

sHALO example page – domains 1 -3SOURCE OF INFORMATION

DO = Direct Observation RP = Role Play IP = Interviewed Person II = Interviewed Informant

EA = unable to assess – ability estimated

1. SELF-CARE

SOURECE OF

INFORMATIO

N

LEVEL OF INDEPENDENCE Is this an issue at night?

Y/N

Comments Give details of help required, with what components of the task and any factors which impact on the person’s abilities,

eg. Are there any motivational issues?

Where there is an ‘OR’ option please indicate which is applicable.

Fully independent (no assistance required)

Fairly independent (some help and/ or prompting needed)

Some independence

(much help and/ or prompting needed)

Very little or no independence (full

assistance required)

1.1Eating/feeding

A B C D 1.2

Drinking A B C D

1.3Hand washing

A B C C 1.4

Managing in toilet A B C D

1.5(a)Continence – day

A B C D 1.5(b)

Continence – night A B C C

1.6 Feminine hygiene/ managing periods A B C D

1.7 Strip washing/ bathing/ showering A B C D

Expected to do a minimum of one of these.

1.8 Hair washing and care of scalp A B C D

SUBTOTAL

Total A = Total N = Total B = Total DO = Total C = Total D =

Updated Behavioural AnchorsSELF CARE

1.1 Eating / feeding

Description of “full independence”

Eats well, with good control over use of cutlery (including ability to cut food). Exhibits appropriate manners (ie. no spitting) and eats at an appropriate pace and without distraction. Eats an appropriate amount and does not steal other people’s food. Understands and complies with dietary requirements (eg. gluten free, vegetarian etc.)

Description Level of IndependenceNone (individual is capable of all the behaviours without any assistance)

Fully independent

Occasional prompting / verbal reminders or physical assistance

Fairly independent

Regular prompting / verbal reminders or physical helpSome independence

Full help required (individual either cannot or will not behave in any of the ways described without full assistance)

Very little / no independence

sHALO – example page domain 4 - 9

SOURCE OF INFORMATIONDO = Direct observation RP = Role play

IP = Interviewed person II = Interviewed informantEA = unable to assess - ability estimated

4. COMMUNICATION (COMM)

SOURCE OF INFORMATION

Read all the statements under

each item and choose the most

appropriate.

Is this an issue at night?

Y/N

Comments Give details of help required, with what components of the task and any factors which impact on the person’s abilities, eg. Are there any motivational issues?

Where there is an ‘OR’ option please indicate which is applicable.

4.1 language understanding

a)

understands almost all of an everyday conversation; can indicate this by rephrasing, or signing back, what is said. Good understanding of TV and radio programmes, evidenced by relating back story, or giving correct responses to queries about story line, characters, etc.

A

b)

moderate difficulties in understanding everyday conversation. If special allowance is made (e.g. simple words/short sentences/word repetition) can rephrase or sign back what is said with few errors. Can carry out most requests (e.g. “please get me a book” and “please get me a cup”) without accompanying gestures (eg. pointing).

B

c)

difficulty in understanding everyday conversation. Special allowances must be made; requests, sentences, words must be simple and additional gestures used (e.g. “please get me a cup” whilst pointing to cup), otherwise cannot respond, rephrase, or sign back what is said.

B

d)

great difficulty in understanding others; can only use one or two words at a time. Relies heavily on exaggerated gestures (e.g. overstated pointing), otherwise cannot sign back or respond to requests.

C

e)no apparent understanding of any language. Does not respond to requests.

C

SUBTOTAL Total A = Total N = Total B = Total DO = Total C = Total D =

Support needs

A = 0-2 hours daily or aggregated to weekly - no night support

B = 3-5 hours daily – no night support

C = 24/7 support

D = 1:1 support

N = Nighttime support

Summary page for each section

Summary Page for Self-Care

Use this space for comments, descriptive assessment, Item Countnoting strengths etc.

Page no. A B C D N No Direct

Obs

1

2

3

Section total

Maximum obtainable

27 27 18 9 18 27

Number of items rated by Direct observation

Graphing

Simple

Put scores into Excel spreadsheet

Spreadsheet gives you graphs and summary page

Demonstration

Case Example and Discussion

These are the graphs for person K

Was undergoing a period of assessment and treatment in our inpatient service

Look at the graphs in groups – and see what these tell you about her needs

Discussion

Why are Executive Functions important?

There appears to be a general consensus that executive functions have a central role in human adaptive behaviour (Ardila & Surloff, 2004), enabling us to function and adapt within environments that are constantly changing (Miyake & Friedman, 2012).

Lezak (1982): “executive functions form the basis of many cognitive, emotional, and social skills”

Volition, planning, purposeful action, & effective performance

Miyake et al

Evidence from research with healthy adults suggests executive functions are both “separable but also moderately related constructs”

This model, explained recently as the unity/diversity framework of executive functioning, has been frequently cited as the most comprehensive model of executive functions that is available at present

This model posits the importance of three specific, lower-level executive functions of:

• Shifting – ability to switch between tasks.

• Updating – a component of working memory involved in operating on incoming information.

• Inhibition – ability to deliberately suppress automatic responses as necessary.

Miyake and colleagues (2000) said that these lower-level functions are necessary for the successful initiation of higher level functions (such as executive processes of volition, planning, purposeful action and effective performance as suggested by Lezak in 1982).

Measuring EF in people with LD

There is little research examining the structure of executive functions in adults with a learning disability

However, based on the available findings from research conducted with adults with Downs’s syndrome and fragile X syndrome it appears that the structure of executive functions closely resembles the tripartite model.

The majority of research in this area tends to rely on using specific tests of executive function rather than administering more comprehensive test batteries.

As a result, there may be some ambiguity as to whether the narrow range of measures are actually measuring the functions of shifting, updating and inhibition or some other aspect of neuropsychological functioning.

BADS-ID

The behavioural assessment of the dysexecutive syndrome in adults with a learning disability (BADS-ID; Webb, 2008).

The BADS-ID is a modified version of the original behavioural assessment of the dysexecutive syndrome (BADS; Wilson, Alderman, Burgess, Emslie & Evans, 2000)

Takes approximately 60 minutes to complete.

Made up of six sub-tests

Sub test Skill tested

Rule shift cards Perseveration

Action programme Problem solving and rule maintenance

Key search Planning and problem solving

Temporal judgement Judgement and abstraction

Supermarket map Planning and rule maintenance

Modified four elements Time management, planning and rule maintenance

BADS v BADS-ID

BADS BADS-ID

Rule shift cards Rule shift cards

Action programme Action programme

Key search Key search

Temporal judgement Temporal judgement

Zoo map Supermarket map

Modified six elements Modified four elements

Rule shift cards

Participants were presented with red and black cards. Responses were determined by rules attached to each colour e.g. when a red card is shown the participant should say “no”. In the second test, the procedure was the same but the rule changed. There were six trials for each test and two practice trials. This subtest was timed.

SAY YES TO RED

Say yes if the card is the same colour

as the last one.

SAY NO TO BLACK Say no if the card is not the same

colour as the last one.

Action programme

Participants were instructed to remove a cork from a tube without touching the cork or the tube. Removal of the cork required the participant to use other materials provided. This subtest was timed and participants were given hints about how to progress every 2 minutes until completion.

Key Search

Participants were asked to imagine that

someone has lost their keys in a field. They

were asked to use a pen to draw a continuous

line to represent how they would search for the

keys. This subtest was timed, but participants

were told they could take as much time as was

necessary for them to be confident they would

find the keys.

Temporal judgement

Participants were asked to guess how long they thought it would take to do a number of everyday activities

How long does it take people to put their shoe on?

How long does it take people to have a shower?

How long is a TV show?

Supermarket Map

Supermarket map

Involved plotting or following a route through a map of a supermarket that did not contravene a set of rules. Their score was based on successful implementation of their plan. Penalties were imposed for rule breaks and lack of speed.

Task 1 – can collect the items in any order

Task 2 – have to collect the items in order

Modified four elements

Time to try!!!

Comparison of skills intended to be assessed

Test Initiation Set shifting Verbal

Set shifting Visual

Rule mainten-ance

Inhibition Abstract’ Common principles

Novel problem solving

Planning Monitor’ Prospect-ive memory

Working memory

Organis-ation of retrieval & recall

Estimat-ion

Follow plan

CEFA VF C&D SR WCS ToL SB BADS-ID

RS AP KS TJ ZM1 ZM2

4P

Psychometric properties

Has been used in 2 D Clin Psych MRP’s with total of 89 people (50.60% male) with a mean age of 42.91 (SD 12.68)

Mean FSIQ was 61.91, (SD 6.64) range 33-88.

The battery has excellent inter-rater reliability (.91), internal consistency (.87) and acceptable face, content and concurrent validity (Sunak, 2009).

Temporal estimation questions do not hold together as a single test

Has been compared to CEFA-EF (Ball et al. 2008).

• Has lower floor than CEFA but similar ceiling

• Covers wider range of executive functioning skills than CEFA (but still not comprehensive)

• Less reliance on working memory

Factor structure

BADS-ID has 1 or 2 factor structure depending on the tests combined

Combined BADS-ID & CEFA-EF tests results in a 4 factor model

• Each battery has items loading of factors 1 & 2

• Factor 3 (CEFA-EF only) Factor 4 BADS-ID only

Further statistical analysis to decide on final composition of the test battery

What next?

Currently writing up for publication

Have submitted application to Pearsons to make it available

Applying for permission to approach original participants to obtain test-retest data.

What is everyday planning?

The ability to independently organise self to undertake activities of daily living, for example:

• Meeting basic needs for food and drink

• Completing tasks with multiple elements

• Getting to appointments on the right day with the right information

• Getting to work on time

• Planning for future events

Getting started on tasks

Seeing them through to conclusion

Tackling unexpected problems

Assessment

Tools are available to assess many of the factors that impact on everyday planning e.g. IQ assessments, assessments of executive functioning

However these require extrapolation to the actual situation

Other assessments are highly detailed and require specialist training e.g. AMPS

Some areas are not adequately addressed by existing assessments e.g. impact of emotional regulation and impulsivity

The tool

• Comprises grids to rate:

InitiationPlanning / sequencingMemory Attention / concentration

• Space to record qualitative information on:

Emotional RegulationImpulsivity

• Prepared grids on common tasks

• Basic grid that can be adapted for any activity chosen by the assessor

Prepared grid:

Task Initiation Planning/Sequencing Memory Attention/Concentration

You’re at home and you feel thirsty, what do you do?

0

Do nothing.

0

Not able to plan / sequence steps required to make a drink

0

Can’t remember they are feeling thirsty long enough to take any action

0

Makes no attempt to get a drink.

1

Accepts offer of a drink when given by staff / carer e.g. at certain times of day only

1

Able to assemble some or all of the necessary items but requires prompting to get steps in the right order

1

May move to get a drink but will forget why they have moved, e.g. forgotten why they have walked to the kitchen.

1

Will take the first step to get a drink but will become distracted and not complete.

2

Will ask for a drink when feeling thirsty or will move to get drink if prompted.

2

Able to assemble the necessary items and complete most steps, but would miss out or mix up some steps if not prompted e.g. boiling kettle

2

Able to remember the first steps needed to make a drink but not able to complete / may repeat earlier steps

2

Able to complete several steps of making a drink before getting distracted by something else.

3

Is able to fetch a drink made by someone else

3

Able to assemble items and make a drink successfully given no problems e.g. all materials available

3

Able to remember the steps to successfully make a drink according to plan

3

Able to make a drink when there are no major distractions

4

Gets up and goes to suitable area e.g. kitchen and starts making drink whenever thirsty

4

Able to assemble items and make drink successfully, even when faced with a problem e.g. kettle not working

4

Able to successfully remember task and hold in mind long enough to solve a problem e.g. no milk for tea so what can I drink instead

4

Able to make a drink independently despite major distractions

Comments

Comments about emotional regulation:…………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………

Comments about motivation:…………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………

Any other comments:……………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………..…..

Qualitative Information:

Presenting the results:

Task Initiation Planning/Sequencing Memory Attention/Concentration

To be specified

0

Do nothing.

0

Not able to plan / sequence

0

Can’t remember long enough to take any action

0

Makes no attempt

1

Co-operates when prompted by others

1

Able to do task but needs prompting to assemble materials and sequence steps

1

Does not remember long enough to complete sequence need prompting at each step

1

Will take the first step but become distracted.

2

Will indicate a need but not initiate action

2

Mostly assembles items needed and completes steps. Needs supervision to ensure they are all in correct order

2

Able to remember the first steps needed but not able to complete / may repeat earlier steps

2

Able to complete several steps before getting distracted by something else.

3

Initiates action but not problem solving

3

Able to plan / sequence when there are no difficulties

3

Able to remember the steps to successfully provided there are no problems

3

Able to complete all steps when there are no major distractions

4

Initiates action and also initiates problem solving if encounters difficulties

4

Able to plan / sequence including addressing problems

4

Able to successfully remember task even when faced with problems

4

Able to complete all steps independently despite major distractions

Comments

Example grid:

Group work

Use the example grid format and choose a task to try and complete the descriptors for that task.

Feedback on ease and practicality.

Any Questions?

Contact details

Dr. Karen Dodd

Surrey & Borders Partnership NHS Foundation Trust,

Ramsay House,

West Park,

Epsom,

Surrey KT19 8PB

DrKaren.dodd@sabp.nhs.uk

01372 205767

Contact Details

Dr. Karen Dodd

Surrey & Borders Partnership NHSFoundation Trust,Ramsay House,West Park,Epsom,Surrey KT19 8PB

DrKaren.dodd@sabp.nhs.uk

01372 205767

Dr. Zillah Webb

Surrey & Borders Partnership NHSFoundation Trust,April CottageFarmfieldCharlwoodSurrey RH6 0BN

zillah.webb@sabp.nhs.uk

01293 774919