New assessment tools for people with Intellectual Disabilities: 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 -3 SOURECE OF INFORMATION SOURCE OF INFORMATION DO = Direct Observation RP = Role Play IP = Interviewed Person II = Interviewed Informant EA = unable to assess – ability estimated 1.1 1.2 1.3 1.4 1.5(a) 1.5(b) Eating/feeding Drinking Hand washing Managing in toilet Continence – day Continence – night 1. SELF-CARE LEVEL OF INDEPENDENCE Fully independent (no Fairly independent Some Very little or no assistance required) (some help and/ or independence independence (full prompting (much help and/ or assistance needed) prompting required) needed) A B C D A B C D A B C C A B C D A B C D A B C C A B C D 1.6 Feminine hygiene/ managing periods 1.7 Strip washing/ bathing/ showering A B C D 1.8 Hair washing and care of scalp A B C D Total A = Total N = Total B = Total DO = Total D = 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? Y/N Where there is an ‘OR’ option please indicate which is applicable. Expected to do a minimum of one of these. SUBTOTAL Total C = Is this an issue at night? Updated Behavioural Anchors SELF 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 None (individual is capable of all the behaviours without any assistance) Occasional prompting / verbal reminders or physical assistance Regular prompting / verbal reminders or physical help Level of Independence Fully independent Fairly independent Some independence Full help required (individual either cannot or will not behave Very little / no independence in any of the ways described without full assistance) sHALO – example page domain 4 - 9 4. COMMUNICATION (COMM) SOURCE OF INFORMATION DO = Direct observation RP = Role play IP = Interviewed person II = Interviewed informant EA = unable to assess - ability estimated SOURCE OF INFORMATION 4.1 Read all the Is this an issue Comments statements under at night? Give details of help required, with what components of the task and any factors each item and which impact on the person’s abilities, eg. Are there any motivational issues? choose the most Y/N appropriate. Where there is an ‘OR’ option please indicate which is applicable. language understanding 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) A 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) B 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. c) B 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. d) C no apparent understanding of any language. Does not respond to requests. e) 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 Item Count Use this space for comments, descriptive assessment, noting strengths etc. Page no. A B C D N No Direct Obs 1 2 3 Section total Maximum obtainable 27 27 18 Number of items rated by Direct observation 9 18 27 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 CEFA VF C&D SR WCS ToL SB BADSID RS AP KS TJ ZM1 ZM2 4P Initiation Set shifting Verbal Set shifting Visual Rule maintenance Inhibition Abstract’ Common principles Novel problem solving Planning Monitor’ Prospective memory Working memory Organisation of retrieval & recall Estimation Follow plan 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: Initiation Planning / sequencing Memory Attention / concentration Space to record qualitative information on: Emotional Regulation Impulsivity Prepared grids on common tasks Basic grid that can be adapted for any activity chosen by the assessor Prepared grid: Task You’re at home and you feel thirsty, what do you do? Initiation Memory Attention/Concentration 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. Accepts offer of a drink 1 when given by staff / carer e.g. at certain times of day only Will ask for a drink when 2 feeling thirsty or will move to get drink if prompted. Able to assemble some or all of 1 the necessary items but requires prompting to get steps in the right order Able to assemble the necessary 2 items and complete most steps, but would miss out or mix up some steps if not prompted e.g. boiling kettle Able to assemble items and 3 make a drink successfully given no problems e.g. all materials available Able to assemble items and 4 make drink successfully, even when faced with a problem e.g. kettle not working May move to get a drink but 1 will forget why they have moved, e.g. forgotten why they have walked to the kitchen. Able to remember the first 2 steps needed to make a drink but not able to complete / may repeat earlier steps Will take the first step to get 1 a drink but will become distracted and not complete. Able to remember the steps to 3 successfully make a drink according to plan Able to make a drink when 3 there are no major distractions Able to successfully remember 4 task and hold in mind long enough to solve a problem e.g. no milk for tea so what can I drink instead Able to make a drink 4 independently despite major distractions Is able to fetch a drink 3 made by someone else Gets up and goes to 4 suitable area e.g. kitchen and starts making drink whenever thirsty Comments Planning/Sequencing Able to complete several 2 steps of making a drink before getting distracted by something else. Qualitative Information: Comments about emotional regulation: ………………………………………………………………………………………………………………………………………… ………………………………………………………………………………………………………………………………………… ………………………………………………………………………………………………………………………………………… ………………………………………………………………………………………………………………………………………… ………………………………………………………………………………………………………………………………………… ………………………………………………………………………………………………………………………………………… ………………………………………………………………………………………………………………………………………… Comments about motivation: ………………………………………………………………………………………………………………………………………… ………………………………………………………………………………………………………………………………………… ………………………………………………………………………………………………………………………………………… ………………………………………………………………………………………………………………………………………… ………………………………………………………………………………………………………………………………………… ………………………………………………………………………………………………………………………………………… ………………………………………………………………………………………………………………………………………… Any other comments: ………………………………………………………………………………………………………………………………………… ………………………………………………………………………………………………………………………………………… ………………………………………………………………………………………………………………………………………… ………………………………………………………………………………………………………………………………………… ………………………………………………………………………………………………………………………………………… ………………………………………………………………………………………………………………………………………… ……………………………………………………………………………………………………………………………………..….. Presenting the results: Example grid: Task To be specified Initiation Memory Attention/Concentration 0 Do nothing. 0 Not able to plan / sequence 0 Can’t remember long enough to take any action 0 Makes no attempt Co-operates when 1 prompted by others Able to do task but needs 1 prompting to assemble materials and sequence steps Mostly assembles items 2 needed and completes steps. Needs supervision to ensure they are all in correct order Able to plan / sequence when 3 there are no difficulties Does not remember long 1 enough to complete sequence need prompting at each step Able to remember the first 2 steps needed but not able to complete / may repeat earlier steps Able to remember the steps to 3 successfully provided there are no problems Able to successfully remember 4 task even when faced with problems Will take the first step but 1 become distracted. Will indicate a need but 2 not initiate action Initiates action but not 3 problem solving Initiates action and also 4 initiates problem solving if encounters difficulties Comments Planning/Sequencing Able to plan / sequence 4 including addressing problems Able to complete several 2 steps before getting distracted by something else. Able to complete all steps 3 when there are no major distractions Able to complete all steps 4 independently despite major distractions 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 NHS Foundation Trust, Ramsay House, West Park, Epsom, Surrey KT19 8PB Dr. Zillah Webb Surrey & Borders Partnership NHS Foundation Trust, April Cottage Farmfield Charlwood Surrey RH6 0BN DrKaren.dodd@sabp.nhs.uk zillah.webb@sabp.nhs.uk 01372 205767 01293 774919