Article 5
Article 5
Article 5
DOI: 10.1111/jar.12530
1
The University of Wolverhampton,
Wolverhampton, UK Abstract
2
The University of East Anglia, Norwich, UK Communication assessment of people with profound intellectual and multiple disa-
3
Manchester Metropolitan University, bilities (PIMD) has seldom been investigated. Here, we explore approaches and deci-
Manchester, UK
sion making in undertaking communication assessments in this group of people. A
Correspondence questionnaire was sent to UK practitioners. The questionnaire elicited information
Darren Chadwick, The University of
about assessment approaches used and rationales for assessment choices. Fifty-five
Wolverhampton, Wolverhampton, UK.
Email: [email protected] speech and language therapists (SLTs) responded. Findings revealed that the
Preverbal Communication Schedule, the Affective Communication Assessment and
the Checklist of Communication Competence were the most frequently used pub-
lished assessments. Both published and unpublished assessments were often used.
Rationales for assessment choice related to assessment utility, sensitivity to detail
and change and their applicability to people with PIMD. Underpinning evidence for
assessments was seldom mentioned demonstrating the need for more empirical sup-
port for assessments used. Variability in practice and the eclectic use of a range of
assessments was evident, underpinned by practice-focused evidence based on tacit
knowledge.
1 | I NTRO D U C TI O N information will enable the generation of assessment approaches which
can more reliably map progress and change in communication skills and
People of all ages with profound intellectual and multiple disabilities furthermore be generalized across interventions to be explored in prac-
(PIMD) experience significant challenges in relation to communica- tice and research.
tion, with limited comprehension of speech and communication at Burton and Sanderson (1998) identified four paradigms that can be
pre-
symbolic or proto-
symbolic levels (Bellamy, Croot, Bush, Berry, used to understand intellectual disability are as follows: ordinary liv-
& Smith, 2010; Iacono, West, Bloomberg, & Johnson, 2009; Maes, ing/normalization, behavioural, functional and developmental. These
Lambrechts, Hostyn, & Petry, 2007). Accordingly, assessment of their have relevance for the way language and communication assessment
communication needs to be addressed in some detail during these early and intervention are addressed. Assessments of early language and
developmental stages. Brady et al. (2018) clearly identify the “void” in communication can be seen as falling broadly into two groups: norm-
options for detailed assessment of these pre-and proto-symbolic lev- referenced assessments (Dockrell, 2001) and criterion-
referenced
els of communication. This void leaves those attempting to enhance assessments (Kaderavek, 2014). Norm-
referenced assessments fol-
communication in people with PIMD little detail on which to base their low continuous developmental progression (e.g., CELF, Wiig, Secord, &
interventions, and a dearth of sensitive assessments to provide base- Semel, 2004; Reynell-III, Edwards, Fletcher, Garman, Hughes, Letts &
line communication information and measure change in this population. Sinka, 1997). These assessments do not, typically, address the pre-and
Given this challenge, it is crucial that current assessment measures proto-symbolic stages (Brady et al., 2012). Criterion-referenced assess-
utilized formally and the rationales for their use are investigated. Such ments, which determine whether or not the learner can do specific
This is an open access article under the terms of the Creative Commons Attribution-NonCommercial License, which permits use, distribution and reproduction
in any medium, provided the original work is properly cited and is not used for commercial purposes.
© 2018 The Authors. Journal of Applied Research in Intellectual Disabilities Published by John Wiley & Sons Ltd
activities, can therefore be seen as more functional. Examples include This has been operationalized through the integration of patient val-
the Preverbal Communication Schedule (PVCS, Kiernan & Reid, 1987) ues and clinical expertise with the best available research evidence
and the Triple C (Bloomberg, West, Johnson, & Iacono, 2009). Hence, (Sackett, Straus, Richardson, Rosenberg, & Haynes, 2000). Currently,
selection of specific assessments can be informed by the underpinning there is limited empirical evidence that demonstrates the integration of
model of communication employed by practitioners. these three strands in the process of communication assessment selec-
There is limited research on the developmental trajectory of com- tion for people with PIMD. Exploration of the decision making around
munication skills in adults with PIMD, though Rondal and Edwards assessment selection and use by SLTs, the key formal communication
(1997) suggest that some continued progress in “language pragmat- assessment practitioners, would help to address this evidence gap.
ics” continues at least into early adulthood. In this paper, therefore, People with PIMD are a low prevalence and highly heterogeneous
we will adopt a lifespan approach, in which both adults and children group with high demands on specialist services (Timmeren et al., 2017).
are regarded as having the potential for communicative development. Guess et al. (1988) found that participants spent less than half their
This point, in conjunction with the risk of social exclusion, makes an time awake and alert, that is, in behavioural states conducive to learn-
argument for communication intervention with children and adults ing. This could pose difficulties for robust assessment. Also, challenging
with PIMD, even if the aim is to increase opportunities for social in- for those wishing to conduct assessments are the co-morbid conditions
teraction and enhance performance rather than to increase compe- and impairments that this client group are likely to experience which
tence per se. This is reinforced by Bunning’s (2009, p. 48) definition: include visual impairments (often cortical, 85%, Van Splunder, Stilma,
“Communication is about two or more people working together and Bernsen, Arentz, & Evenhuis, 2003), hearing impairments (25%–35%,
coordinating their actions in an ongoing response to each other and Evenhuis, Theunissen, Denkers, Verschuure, & Kemme, 2001), epilepsy
the context.” This emphasizes the importance of the active role of (50%, Lhatoo & Sander, 2001), neuro-
motor impairments (Arvio &
the communication partner. However, they may struggle to interpret Sillanpää, 2003) and gastro-oesophageal disorders (Van der Heide, Van
communicative intent or to respond sensitively to the communicative der Putten, Van den Berg, Taxis, & Vlaskamp, 2009). These conditions
behaviours of people with PIMD which are often individual and id- can also have a negative impact on wellbeing and participation (Zijlstra
iosyncratic (De Bortoli, Arthur-Kelly, Foreman, Balandin, & Mathisen, & Vlaskamp, 2005).
2011; De Bortoli, Balandin, Foreman, Mathisen, & Arthur-Kelly, 2012; The complexity and heterogeneity of sensory, perceptual, motor
Forster & Iacono, 2008; Healy & Noonan Walsh, 2007; Hostyn, and cognitive impairments experienced by people with PIMD suggest
Daelman, Janssen, & Maes, 2010). As a result, people with PIMD can that they are unlikely to conform to the standardization sample of pub-
be left socially, societally and educationally excluded. Such commu- lished assessments aimed at the wider population of individuals with
nication difficulties can leave people with PIMD unable to influence communication impairments. People with PIMD, who may experience
their surroundings or instigate interactions with others and may very protracted periods within early developmental stages, cannot
ultimately render them devoid of agency. The assessment of com- be assumed to follow typical trajectories (Brady et al., 2012). Brady
munication skills provides a crucial baseline for “two or more people et al. (2012) discuss a range of syndromes with non-typical progres-
working together” (Bunning 2009, p. 48) by informing them about the sion, suggesting that researchers and practitioners should, at least, be
learner’s level of communication thus providing the starting point for wary of making developmentally based assumptions. In order to sup-
the coordination of actions and ongoing responses. port evidence-based practice, the authors of the Triple C (Bloomberg
Assessment of language and communication is a core professional et al., 2009; Iacono et al., 2009), PVCS (Kiernan & Reid, 1987) and the
skill of Speech and Language Therapists (SLTs). A position paper from Communication Complexity Scale (Brady et al., 2012, 2018, still in
the Royal College of Speech and Language Therapists (RCSLT) in the UK development) have engaged in some evaluation of the psychometric
(Baker, Oldnall, Birkett, McCluskey, & Morris, 2010, p. 10) has identified properties of both assessments.
SLTs as the lead experts on communication for people with intellectual Despite presenting with complex communication profiles, there
disabilities. Further guidelines by the RCSLT (2006, p. 200) described appears to be consistency across categorizations of communication in
the purpose of the assessment process as “to identify and collect the people with PIMD. Using assessment data (Triple C, Bloomberg et al.,
requisite range of relevant information through appropriate formal and 2009), from 72 adults aged 20–70 with severe and profound disabili-
informal methods including discussion with client/carer and consulta- ties, Iacono et al. (2009) have demonstrated progression through five
tion with colleagues.” Amongst other outcomes from assessment, they stages: unintentional passive, unintentional active, intentional formal,
included identification of the client’s communication profile of strengths symbolic (basic) and symbolic established. Rowland’s (2013) communi-
and difficulties, any challenges presented by communication in every- cation matrix reports on seven levels, from pre-intentional behaviour
day functioning, the capacity for change, opportunities for intervention, through to intentional language. The first six of these correspond to the
information for clinical prioritization, management and planning and range described in the Triple C comprising pre-intentional behaviour,
forward referral to other agencies (RCSLT, 2006). Moreover, the impor- intentional behaviour, unconventional communication (pre-symbolic),
tance of robust communication assessment in informing and charting conventional communication (pre-symbolic), concrete symbols and ab-
evidence-based intervention is well substantiated (Brady et al., 2012; stract symbols.
Dockrell & Marshall, 2013). Appropriate assessment selection and use Few published communication assessments are available that
are increasingly seen as part of establishing evidence-based practice. have been specifically devised for people with PIMD (Iacono et al.,
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338 CHADWICK et al.
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2009). The reason for this lack of specific assessment availability is was further refined on consultation with a group of three SLTs ex-
unclear, although we hypothesize that it may be as a result of the perienced in working with PIMD and literature on survey design
low incidence of this population (Mansell, 2010). Those with PIMD (De Vaus, 2013; Oppenheim, 2000). Responses were requested for
are a “Cinderella” (i.e., low status) group within a “Cinderella” group the following: (a) name each assessment used with children and/
(the population of people with an intellectual disability), receiving or adults with PIMD and (b) provide the source of the assessment
less attention in both practice and research, compared with others or descriptive information regarding how and why the assessment
both with and without intellectual disabilities (cf. Harflett, Turner, was created. Participants were asked in open-ended questions to
& Bown, 2015). It is also important to note that the complementary provide their rationales for choosing and using any assessment they
use of multiple assessments, for example, the use of eclectic ap- named. The same information was requested for assessments in two
proaches, including formal and informal language assessments and different categories: (a) published assessments and (b) unpublished
family input, has been advocated in the process of communication assessments. The latter included assessment material devised within
assessment of people with PIMD (Brady & Halle, 1997; Brady et al., the service where the respondent currently worked (in-house as-
2012; Ogletree, Turowski, & Fischer, 1996). sessments), those devised outside the service but unpublished and
Given the limits of assessment material and the complex needs of personally devised assessments. Space was provided at the end
this client group, it is unsurprising that there is a lack of clarity within of the questionnaire for further relevant descriptive information.
the extant literature regarding communication assessment selection Background information about the SLTs was also gathered, compris-
and use. The aim of this paper was to explore how communication ing the level of experience they considered themselves to have in
assessment was conducted in the UK with people with PIMD across the area of communication assessment and intervention with people
the lifespan by SLTs. A survey was employed in an attempt to estab- with PIMD, the type of setting they worked in and other stakehold-
lish a picture of current practice of SLTs who worked with children ers they collaborated with. The finished survey was piloted with
and adults with PIMD and who utilized core assessment as part of three non-participant SLTs and amended in line with their sugges-
their role. Of particular interest was the nature of communication tions to clarify some of the directives and instructions on the ques-
assessments used, and the rationales provided for their selection tionnaire. No change was made to the content or to the information
and use. requested. A copy of the survey can be obtained from the first au-
thor upon request. PMLD rather than PIMD was the terminology
used within the survey as this was believed to be the terminology
1.1 | Research questions
most commonly used with the UK context, PIMD has been used in
1. What communication assessment approaches were most com- this publication to accord with the journal style.
monly used by SLTs working with children and adults with
PIMD?
2.3 | Recruitment and sampling
2. What rationales were given by SLTs working with children and
adults with PIMD for the selection of these assessment The regular RCSLT Bulletin, their CPD e-
newsletter and RCSLT
approaches? Special Interest Groups were targeted for dissemination of recruit-
ment information via letter and an invitation for interested SLT par-
ticipants to contact the principal investigator (PI) directly for further
2 | M E TH O D
details. No reliable data was available to show the number of SLTs
currently working in the UK in this specialist area. Multiple, non-
2.1 | Design
probability sampling techniques were used to maximize response
For this exploratory investigation, a questionnaire-
based survey rate for recruitment. The first, purposive self-selected sample of
was used to collect data from SLTs currently in practice. Descriptive participants were those who self-identified as working with a client
information was gathered about the type of assessments chosen group of children or adults with PIMD. This formed the inclusion
and the priorities given for that choice in working with children and criterion for the study. To increase recruitment, snowball sampling
adults with PIMD. Questions were asked relating to the source of was also employed, where those who had participated were asked
the assessment material, which client group the clinician used it with to identify and forward the questionnaire to colleagues and other
and the rationales for its use. Ethical approval was given for this pro- eligible SLTs they knew of who also worked in the area of PIMD.
ject by South West England Research Ethics Committee.
2.4 | Participants
2.2 | Development and pilot of questionnaire
Final recruitment resulted in usable surveys from 55 SLTs who
Discussion at the Special Interest Research Group for Profound worked with children (30) and/or adults (35) with PIMD (10 par-
and Multiple Learning Disabilities (PMLD) within the International ticipants worked with both children and adults). Within this group,
Association for the Scientific Study of Intellectual and Developmental participants represented all but two Higher Education Institutions
Disabilities (IASSIDD) informed the design of the initial survey. This (HEI) that provided accreditation for qualifying SLTs in the UK. No
CHADWICK et al. |
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uncompleted surveys were returned, 52 were fully completed with 3 were entered into SPSS on a password protected computer for fu-
having some minimal missing data. ture reference.
TA B L E 1 (Continued)
Psychiatrists 3 5.5
All mentioned by a single respondent: Play specialist, 1 1.9
school tutor, special educational needs coordinator
(SENCO), behaviour specialist, music therapist, sensory
support coordinator, “Seeability” worker (for profound
cognitive and sensory impairments), medical officer,
paediatrician, respite carer, Portage worker and racial
minority link worker
Use of unpublished assessments reportedly involved developing likes and dislikes (2; 7.4%), and demonstrated their communication
new assessments, but it also involved taking a number of existing strengths (3; 11.1%). They also helped them to better understand
assessments, adapting each and merging them into a new assess- the specific ways people communicated across different contexts
ment, or taking an individual published assessment and adapting it. (1; 3.7%).
Hence, an eclectic approach to assessment was evident in the work Third, use of particular assessments supported effective work-
of the SLTs surveyed. The purpose in all cases was to develop, in ing with communication partners, including family and paid carers
the opinion of the participant, a more functionally useful assess- and teachers (10; 37.0%). Some assessments were described as
ment. Unpublished assessments were used more often with adults helpful for explaining communication levels of the person with
(26; 52%) than children (20; 40%); only three used them with both PIMD to communication partners. This enabled a shared under-
adults and children (3; 6%). Hence, these tended to be used with ei- standing of the person’s communicative behaviours to be reached
ther adults or children with few using unpublished assessments with (8; 29.6%). Assessments were also used in training communica-
both groups. This contrasts with the published assessments, which tion partners and in setting joint goals with them (5; 18.5%). Using
were more often used with both adults and children. assessments in this way was described as helping to build more
positive relationships between the clinician and these stakehold-
ers (2; 7.4%).
3.2 | Published communication assessment use
Fourth, 12 (44.4%) of the assessments were used because they
A list of all published assessments reportedly used by the re- supported and informed the development of communication inter-
spondent clinicians can be seen in Table 2. Appendix 1 provides ventions (10; 37.0%) and provided a baseline against which develop-
an overview of the aims, methods, outputs and specific rationales mental and functional change (3; 11.1%) and intervention success (3;
reported by respondents for using each of the different assess- 11.1%) could be measured.
ments. Only three assessments were cited by more than 5 SLTs: the Fifth, the utility of assessments was a key influencing factor in
Preverbal Communication Assessment (25; 45.5%), the Affective clinicians’ motivation to use them (18; 66.7%). Some assessments
Communication Assessment (21; 38.2%) and the Checklist of were selected based on their “user-friendliness” and because they
Communication Competence (Triple C) (9; 16.4%). were easy to use with unfamiliar clients on initial assessment (8;
Synthesis of the specific rationales provided for using the pub- 29.6%). The comprehensiveness in detail, breadth and thoroughness
lished assessments resulted in six core motivators for assessment of the information assessments provided was also mentioned (4;
selection and use (Table 2). First, the potential information that 14.8%). Conversely, the brevity of some assessments was deemed
could be gleaned about the person’s communicative developmen- a benefit when assessing people with more limited concentration
tal level informed the selection of 16 (59.3%) out of the 27 assess- (2; 7.4%). The utility of assessments within educational settings was
ments. Comments were made about assessments being appropriate deemed an important part of some assessments (2; 7.4%) because
to the communicative level of people with PIMD because they en- they mapped onto developmental stages or locally based curricula.
abled identification and distinguishing of early communicative de- Flexibility in how information could be gathered was another con-
velopmental stages (7; 25.9%), levels of receptive and expressive sideration (1; 3.7%). A final practical aspect reported was the ob-
communication (5; 18.5%), pre-intentional, intentional and formal servational focus and ability to use some assessments to structure
intentional communication (3; 11.1%) and vocabulary and grammar observations (5; 18.5%).
use (2; 7.4%). Finally, the fact that assessments were underpinned by re-
Second, assessments were selected because they provided search evidence was mentioned by one respondent. For only
information about how the person with PIMD communicated (7; two assessments (7.4%), the fact that they were recognized and
25.9%). This included identifying specific, personalized communi- research-b ased was mentioned, although the nature of this re-
cation behaviours used (2; 7.4%), how they communicated their search was not provided as part of their rationale for choosing the
desires and needs (4; 14.8%), how they made choices, indicated assessment.
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(Continues)
343
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344
TA B L E 2 (Continued)
Renfrew, 2011)
Redway School’s Communication 2 3.6 0 0.0 0 0.0 2 3.6 ✗ ✗ ✓ ✓ ✓ ✗
Assessment (no reference available)
Object related Schemes (Coupe & 2 3.6 0 0.0 2 3.6 0 0.0 ✓ ✗ ✗ ✓ ✓ ✗
Levy, 1985)
Assessing and Promoting Effective 1 1.8 0 0.0 1 1.8 0 0.0 ✗ ✗ ✓ ✓ ✓ ✗
Communication (APEC; Bolton,
2004; Latham & Miles, 1996, 2001)
Boehm—Test of Basic Concepts 1 1.8 0 0.0 1 1.8 0 0.0 ✓ ✗ ✗ ✓ ✓ ✗
(Boehm, 1986)
Communication Matrix (Rowland, 1 1.8 0 0.0 1 1.8 0 0.0 ✗ ✓ ✗ ✓ ✓ ✗
2013)
Do-Watch-Listen-Say (Quill, 2000) 1 1.8 0 0.0 1 1.8 0 0.0 ✗ ✗ ✗ ✗ ✓ ✗
Living Language (Pre-language record 1 1.8 0 0.0 1 1.8 0 0.0 ✗ ✗ ✗ ✗ ✓ ✗
book; Locke, 1985)
PreSchool Language Scales (PLS; 1 1.8 0 0.0 1 1.8 0 0.0 ✓ ✗ ✗ ✗ ✓ ✗
Zimmerman, Steiner, & Pond, 2011)
Reynell Developmental Language 1 1.8 0 0.0 1 1.8 0 0.0 ✗ ✗ ✗ ✗ ✓ ✗
Scales (RDLS; Edwards, Letts, &
Sinka, 2011)
Symbolic Play Test (SPT; Lowe & 1 1.8 0 0.0 1 1.8 0 0.0 ✓ ✗ ✗ ✗ ✓ ✗
Costello, 1988)
Communication Assessment Profile 1 1.8 0 0.0 0 0.0 1 1.8 ✓ ✗ ✗ ✗ ✗ ✗
(CASP; van der Gaag, 1988)
CHADWICK et al.
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in communication (17; 34.7%). Linked to this, individual reports With regard to key assessment functions and the assessments
showed that therapists had also developed assessments to enable most commonly used by respondents (N > 5), both the PVCS and the
staff to identify development and change by breaking down skills ACA reportedly provided information about developmental levels of
into smaller steps. This was reported as supporting staff focus on communication, information about how individuals communicated,
aspects of communication that they might have missed and which supported communication partner understanding and collabora-
could evidence change (2; 4.1%). tion and informed intervention planning and the charting of change.
Moreover, they were reportedly pragmatically viable to use and sup-
ported by evidence. The Triple C assessment also met the majority of
3.3.8 | Organizational reasons for using unpublished
the same functions identified, with the exception of providing details
assessments
of how an individual communicates. It also lacked mention of being
Finally, organizational policy influenced the use of assessments and an evidence-based assessment, despite the availability of psychomet-
in some cases prompted development of in-house and adapted as- ric information (Bloomberg et al., 2009; Iacono et al., 2009). By using
sessments of communication (8; 16.3%). Lack of resources and time these core communication assessments a shared language could be
in services to create more complex in-depth assessments led to the developed to enable a more robust process of communication assess-
development of shorter screening tests and checklists which were ment for people with PIMD to enhance intervention and research.
quicker and easier to administer (8; 16.3%). The development of in- As expected, the complexity of impairments experienced by peo-
house assessment recording forms also enabled a more consistent ple with PIMD leads SLTs to use specialized assessments, designed for
approach within teams of practitioners and encouraged clear record this client group, rather than norm-referenced assessments standard-
keeping (2; 4.1%). ized on a typically developing population. In particular, SLTs identified
the importance of the in-depth focus on very early communication,
which would not be evident in norm-referenced assessments and
4 | D I S CU S S I O N which typically do not address developmental levels below 18 months
(Brady et al., 2012; Dockrell, 2001). The assessments commonly cited
This survey endeavoured to establish a picture of current practice of by informants in this study all address issues such as the transition
SLT assessment of communication in people with PIMD. This enabled from pre-intentional to intentional communication which would be
us to discern consistency and robustness of assessment processes and relevant to intervention planning for this client group. In this context,
associated decision making. Being able to generate assessments that it was surprising to see two SLTs reporting use of the TROG (Bishop,
can reliably map progress in communication skills and that could be 2003), which begins at a comprehension age of four years.
generalized across the work of SLTs would undoubtedly strengthen Rationales for assessment use centred around pragmatic utility
their potential to define more effective interventions and to research and how practical, easy and effective the assessments were in pro-
these with more replicability in the future. If taken up by other practi- viding fine-grained early-stage communication information about
tioner and researcher groups, this consistency would also strengthen the particular person. Providing a good vehicle for discussing com-
the accumulating research evidence base. munication and interaction frameworks with carers and family was
also cited as a reason. The rationales further indicated that SLTs used
assessments, to gauge how an individual communicated and how
4.1 | Communication assessment with people
best to engage with him/her, over and above ascertaining their de-
with PIMD
velopmental level of communication and strengths and weaknesses.
The assessment in practice of communication skills is an under- Assessments were also reportedly used as a baseline for designing
studied aspect of PIMD. Three published communication assess- and tracking the success of interventions. A mirroring of the key
ments were reportedly most often used by respondent SLTs: the motivational and beneficial aspects of assessments was observed
Preverbal Communication Schedule (PVCS; Kiernan & Reid, 1987), across the published and unpublished assessments.
the Affective Communication Assessment (ACA; Coupe, Barton, The rationales indicated some limited fitness for purpose amongst
Collins, Levy, & Murphy, 1985) and the Checklist of Communication the published assessments used. Many respondents, however, re-
Competence (Triple C; Iacono et al., 2005). It is difficult to con- ported using an eclectic mix of published, unpublished and self-
trast our findings here with non-U K literature because the ter- devised assessments. This suggests that no single assessment was
minology and criteria around profound intellectual disability vary considered adequate to fully assess all aspects of communication for
considerably (Bellamy et al., 2010), and we could not identify par- clients with PIMD. Indeed, using a patchwork of unpublished assess-
allel research from other parts of the world. All three, and indeed ments gathering information from observation, case notes and proxy
all the assessments reported, are from Anglophone countries stakeholder sources, alongside published assessments appeared to
(Two from the UK and one from Australia). While at the preverbal be common amongst participants. The robustness of such an eclectic
level, a non-English language-b ased assessment would be equally approach and whether assessment practices were individualized to
relevant, it is likely that these are more difficult for practitioners the setting where the SLT worked, their practice experience and ap-
to access and use. proach (e.g., developmental or functional approach to communication
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assessment), or to the assessment needs of the individual with PIMD through Melland School (Manchester, UK), although it has been re-
is not fully clear from the data accrued here. SLT assessment practice produced in part in a number of published books and training pro-
revealed in this study accords with the use of multiple approaches grammes (e.g., at http://complexneeds.org.uk/). This may reflect the
and holistic assessment involving various stakeholders in evaluating limited commercial viability for assessments for a low prevalence
skills in children with complex needs (Brady & Halle, 1997; Brady group. The 2nd edition of the Triple C (Bloomberg et al., 2009) has
et al., 2012; DeVeney, Hoffman, & Cress, 2012; Ogletree et al., 1996). been published and is commercially available, although not through a
It is notable that unpublished assessments were more often used mainstream publisher. It appears that once practitioners begin to use
with older rather than younger people with PIMD. A number of po- an assessment they may continue to use it, even if it becomes unavail-
tential reasons may explain this finding, but would require further able. No SLTs reported using the Communication Complexity Scale
investigation. Fewer assessments were specifically designed for (CCS; Brady et al., 2012, 2018), but this is not surprising, as it had only
adults (5; 18.5%) or both adults and children (5; 18.5%) than for chil- been described in the research literature at the time of the survey. As
dren (17; 62.9%) (See Appendix 1), and because of this, there may the psychometric properties of this scale are now being published,
be more need for unpublished assessments to be developed for and appear robust, this would appear to be a valuable addition to the
adults with PIMD. There may also be more focus on functional as- assessment resources available for this underserved group.
sessment in adults rendering some of the more developmentally fo-
cused child assessments to be viewed as less useful for practitioners.
4.3 | Limitations & future directions
Nonetheless, there was evidence of some assessments devised for
children being used and adapted for adults in participant accounts. This study is UK focused and as such cannot be generalized beyond
this context. It is difficult to discern the representativeness of the
sample due to lack of information regarding the number and dis-
4.2 | Evidence-based assessment
tribution of UK SLTs working on communication with people with
As with interventions for people with PIMD (Goldbart, Chadwick, PIMD. Future research should aim to broaden this work, as assess-
& Buell, 2014), the needs of this client group and the integral im- ment use may vary considerably based on setting, geographical loca-
portance of those providing daily support seemed to underpin tion and availability of assessment material.
the choice of communication assessment. The expertise of the A further limitation of the present study is that it solely focuses
respondents, although self-r ated, was seldom mentioned as a ra- on SLTs as respondents. For younger people with PIMD, teachers
tionale. This, however, may be incorporated into the pragmatic are also likely to use communication assessments. Some assess-
utility rationale where participants mentioned the assessments ments e.g., Routes for Learning (Welsh Assembly Government,
they found easier, quicker and more flexible to use based on their 2006), Assessing Communication in the Classroom (Latham & Miles,
experience. Limited use of empirical evidence to support assess- 1996), the Communication Development Profile (Child, 2006) and the
ment selection decisions was evident, suggesting the need for SCOPE curriculum (Hazell & Larcher, 2006) were seldom mentioned
more work determining the efficacy of different communication by respondent SLTs but may be commonly used by teachers. Parallel
assessments for people with PIMD. Perusal of the extant literature research work investigating assessment use by teachers is indicated.
revealed limited reliability and validity information in existence for More recent assessments which are available and show promise in
the published assessments. The Triple C, developed for use with this field include the CCS (Brady et al., 2012, 2018; as indicated ear-
adolescents and adults with PIMD, has some published informa- lier) and the Scale for Dialogical Meaning Making (Hostyn et al., 2010)
tion about its psychometric properties (Iacono et al., 2009) but for neither of which were reportedly used by the respondents here.
other commonly used assessments, psychometric information was As noted, the respondent SLTs were not always clear in their
not available. It would be useful for SLTs to pay further attention description of rationales and use. For example, in some instances
to the published psychometric properties of assessments they se- discerning whether a child or adult version of an assessment was
lect and their relevance to this client group. being used was not fully articulated. A final point of note is that
For the published assessments, only one SLT referred to both some assessments reportedly used with people with PIMD were de-
the PVCS and the ACA as “research-based” with more participants velopmentally inappropriate and unlikely to provide beneficial infor-
(6) reporting learning, reading and evidence as underpinning unpub- mation for this group (e.g., TROG, REEL, CeLF). This led to questions
lished assessment development. The robustness and trustworthi- of how and why these assessments had been cited as used which
ness of the literature in informing practice as perceived by the SLTs cannot be addressed by the available data.
needs further consideration. It is unclear whether SLTs were con- Utilizing a survey to gather data regarding the rationales for se-
sidering non-peer-reviewed professional publications such as SLT lection of assessments was useful in gaining a breadth of information,
in Practice and the RCSLT Bulletin as research evidence. Further although it sometimes led to responses which did not illuminate the
exploration of what is considered robust evidence in assessment thought processes behind assessment decision making (e.g., describ-
use by practitioners working with people with PIMD is needed. ing the assessment as useful without explaining why and in what
Of the assessments used with people with PIMD, the PVCS has ways it was useful). Nevertheless, this investigation contributes to
been out of print for several years, and the ACA is available only the existing evidence base, by providing some information about the
CHADWICK et al. |
347
Published for the British Institute of Learning Disabilities
clinical rationales for assessment choice and use in a typically under- further work is urgently needed to fully explore communication
served and overlooked group. As the questionnaire was devised spe- assessment that leads to effective intervention with this often
cifically for this project, the robustness of this approach is difficult to overlooked group of people.
gauge. The questionnaire format may have also led to greater social
desirability bias in responses, where practitioners may have reported
AC K N OW L E D G M E N T S
their most ideal practice. Further research utilizing observational,
focus group or interview methodologies may allow more robust, and We would like to acknowledge the work of Margaret Glogowska for
deeper understanding of assessment practices and the rationales for her work on an early version of the survey.
specific assessment use with people with PIMD to further contribute
to the evidence base and guide practice developments in this area.
ORCID
servation where everyday objects were used to gauge engagement, Arvio, M., & Sillanpää, M. (2003). Prevalence, aetiology and comor-
comprehension and symbolic understanding. Discussions with key bidity of severe and profound intellectual disability in Finland.
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people in the person’s life augmented these assessment processes.
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Communication assessment and accessing the inner world
Baker, V., Oldnall, L., Birkett, E., McCluskey, G., & Morris, J. (2010).
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time-
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APPENDIX 1
|
Showing additional information for each assessment reported by SLTs as used with people with PIMD
350
the_pvcs.pdf Accessed Interaction, Negative unfamiliar clients (1) and as providing a useful starting point or baseline
21/04/2016] Interaction and Shared (2). The profile within the assessment was regarded as identifying
Attention. strengths and needs across areas of communication (3) and in plotting
Some psychometric progress (2). Three SLTs used the assessment to differentiate between
properties were pre-intentional, intentional and formal communication or to identify
evaluated (details in the client’s overall level (1). One used the PVCS to structure observa-
the PVCS manual) tional assessments and one described using it in combination with the
Redway assessment to provide a different perspective
Affective Communication Assessment (ACA)
Coupe et al. (1985), Children Pre-intentional communica- Observation, Interpretation of these The rationales given for using the ACA were varied but often connected.
Available from Melland (though tion; physical, facial and vocal preferably using responses as The thorough, comprehensive and detailed nature of the assessment
High School, 50 used responses to an individualized video, and conveying “like,” was commented on by SLTs (4) with many (11) describing the assess-
Wembley Road Gorton more set of stimuli; events, people, coding of these “dislike,” “want,” ment as useful in one way or another. More specifically that it was
Manchester M18 7DT, widely) actions, sensations affective “reject” and other. designed for people with PIMD (2) and there was currently little
UK (emotional) These interpretations available for people with PIMD (4). The fact that it was research-based,
responses by can then be assessed and a recognized assessment was also mentioned (1). The ACA
familiar people against another set of reportedly had utility at the initial assessment during the first meeting
stimuli to identify and acted as a starting point when working with people with PIMD (2),
clusters of behaviours helping to identify the communicative behaviours of this group (2) and
that can be inter- helping to determine the person’s strengths and needs (1). Ways in
preted as like, dislike which the ACA contributed to and informed assessments were also
etc. noted by some SLTs. Going through the ACA together was said to help
Reliability data improve relationships with family and staff (2), be useful in training (3)
available in Coupe- and it was said to support intervention choice (2). The developmental
O’Kane and Goldbart nature of the assessment (1) and that it provides a baseline, allowing
(1998). progress to be tracked, and goal and target setting (5) were also given
Communication as reasons for its use. Finally, indirect reasons for its use were
before Speech. provided, these were that it provides an alternative viewpoint and
London: Fulton additional information (2) and that the SLT gave it to students to use
when teaching (1)
CHADWICK et al.
(Continues)
CHADWICK et al.
A P P E N D I X 1 (Continued)
time sampling)
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351
(Continues)
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352
A P P E N D I X 1 (Continued)
Pragmatics Profile of Two The child’s communicative Informal but Not intended to be The reasons given for use included that it provides insight into how the
Everyday versions: functions, how they respond structured standardized. Skills in person with PIMD communicates. Another SLT mentioned that the
Communication Children to others’ communication, interview the four areas are findings from the pragmatics profile can be used to compare the
Dewart and Summers & adults interaction strategies and the eliciting summarized in a communication of people with PIMD across settings (1). All those that
(1988, 1996). impact of context on information profile sheet used it reported that it was useful to use with family members and
Children’s version communication from teachers, staff supporters (3) and that it provides a joint understanding of the
downloadable from parents or other person with PIMD’s communication (1)
http://complexneeds. familiar people
Published for the British Institute of Learning Disabilities
org.uk/modules/
Module-2.4-
Assessment-
monitoring-and-
evaluation/All/
downloads/m08p080c/
the_pragmatics_profile.
pdf (Accessed
01/03/17)
St Margaret’s Curriculum Children No detail publicly available No information The assessment is an The assessment was viewed as detailed (1) and appropriate for the client
(Renamed as “The Communication is listed as available integral part of the group (1). Two SLTs identified its utility in informing intervention and
Children’s Trust”): one of five Key Skill Areas in curriculum one that it was helpful in identifying the child’s communication level
Unclear if this is the the IMPACTS programme
IMPACTS curriculum
currently used by the
school. See https://
www.thechildrenstrust.
org.uk/our-curriculum-
Early Communication Children Detailed checklist of communi- Observation and Maps onto intervention All three clinicians commented on how easy the ECA was to use,
Assessment (ECA) cation behaviours organized direct elicitation approaches described especially for clients functioning at lower cognitive levels. They liked
In Coupe-O’Kane and to check for consistency of by familiar in the source book the fact that it was broken down into small steps and one SLT remarked
Goldbart (1998) responses and levels of people using a that there were very few suitable alternatives for assessing at this level
intentionality in communica- variety of
tion from pre-intentional sensory stimuli
through to fully intentional
(Continues)
CHADWICK et al.
A P P E N D I X 1 (Continued)
Assessment & Reference groupa Information gathered is gathered analysed & data output Specific rationales given for choosing published assessments
SCOPE Supporting Children A full package for assessing Close observa- Detailed developmental A respondent used this to assess the kind of visual support that a client
Communication through & adults needs with a view to tion of the checklists used to requires, namely assessing the appropriate symbol size to use with
AAC providing AAC. Module 9 individual’s establish baseline of clients (1). Another used it to establish what type of AAC a child might
Hazell and Larcher comprises frameworks for behaviours in a behaviours. These are be able to access and at what level (1)
(2006). Communication assessing communication of variety of described and
Aids Project UK: children and adults with contexts over a matched to P-Levels.
SCOPE) PIMD using a range of period of time Summary charts are
behaviour checklists linked to provided to track
national curriculum P Levels progress across
“milestones”
Test of Receptive Children Measures the understanding of Specific ability to Standardized test with SLTs reported using the TROG as an aid to comprehension assessment
Grammar (TROG) 20 grammatical constructs 4 understand age norms (2), despite the TROG developmentally only beginning at four years of
Bishop (2003) times each using pictures grammatical age. This indicates it was used with people with severe to moderate
Multiple choice picture concepts cognitive impairment rather than PIMD
material is shown, requested without the
to point to the correct picture help of context
in relation to a spoken
statement
Receptive-E xpressive Children Developmental test designed Results obtained Norm referenced to Although both SLTs who reported using this assessment did so to
Emergent Language to identify infants and from caregiver provide age determine individual children’s level, one regarded the steps in the
Test (REEL) toddlers who have language interview equivalents assessment as too large. The other found that the assessment
Bzoch et al. (2003) difficulties. Provides identified the next step to work on. S/he also used it in joint observa-
breakdown of small stages in tional assessment with parents
early language development
See What I Mean (SWIM) Children Guidelines for ascribing Interviews and Protocols/forms SLTs described using SWIM as an assessment tool because it is useful
Grove et al. (1999) (out & adults meaning to communication in discussion with provided for gathering for gathering initial information (2). Therapists also used it as a tool for
of print) context of decision making. caregivers, key relevant descriptive empowerment, advocacy and awareness raising, through its focus on
Sets of procedures provided people, information from a identifying communication skills in clients with PIMD, this led to
for gathering info, for creating Consensus variety of sources to opportunities for choice and decision making. This second aspect was
formal discussion and for discussions, reach consensus on noted as the most important aspect of this tool by the therapists who
checking interpretations Observations how person communi- also commented that SWIM was a good tool to demonstrate these
cates: level of intent, skills and abilities to carers and family members
Published for the British Institute of Learning Disabilities
with or without
physical prompt,
ability to persist in
communication
(Continues)
|
353
A P P E N D I X 1 (Continued)
|
354
Communication Profile Adults Part 1 provides a joint Information Descriptive profile of Clinicians stated that they used the Communication Profile because
(for people with framework for dialogue gathered expressive and they found it “user-friendly”, simple and it provided useful summary
learning disabilities) around communication issues. through receptive communica- information for education professionals and family. One SLT com-
McConkey and Part 2 is a one-page discussion with tion skills leading to mented that the link with curriculum P-Levels (English Statutory
Valentine (2008) (No user-friendly summary sheet a range of key clear aims for Performance Scales for pupils with PIMD designed to indicate
longer available) which encapsulates this communication intervention, planning, developmental level) was also an advantage
discussion, giving an overview partners charting change, and
of understanding and training
expressive communication in
basic practical terms
Clinical Evaluation of Children Measures broad range of A range of Standardized norms SLTs reported using the CELF but it was apparent from their rationales
Published for the British Institute of Learning Disabilities
Language (CELF expressive and receptive picture and provided that they used it with less cognitively impairment people with
PreSchool) language skills in young auditory intellectual disability
Wiig et al. (2004) children; Subtests include: prompts are
sentence structure, word provided to test
structure, vocabulary, both receptive
following directions, recalling and expressive
sentences, phonological language skills
awareness
Derbyshire Language Children Primarily an intervention Combination of Expressive and The DLS was regarded as useful in assessing comprehension (2) and
Scheme (DLS) programme (Levels 1–10) that picture and toy receptive levels of informing therapy (2). One SLT also used it to inform parents and
Knowles and starts with assessment of stimulus language measured by teachers of the appropriate level of language to use with a child
Masidlover (1982) early expressive and material that use and understanding
receptive language levels are pointed to, 1–4 information
responded to carrying words. Not
verbally or standardized
moved/
manipulated by
person being
tested
Renfrew Action Picture Children Provides samples of spoken A series of Designed for 3-to Therapists reported using the RAPT because they found it a good
Test (RAPT) language that can be pictures are 8-year-olds; standard- assessment to gauge expressive language level, it was also used to
Renfrew (2011) evaluated in terms of shown to the ized norms provided assess use of grammar. Because it was a short test it was considered
grammar and language client with set useful with people more limited concentration
content: use of nouns, verbs, questions
prepositions, tense, irregular designed to
forms of plurals and tense, elicit the target
simple and complex sentence response
construction, passive voice
(Continues)
CHADWICK et al.
A P P E N D I X 1 (Continued)
Redway School’s Children Unclear whether this is the No further No further information One respondent reported using Redway School’s assessment because
Communication same as APEC below. No information available there was a dearth of suitable approaches for this client group and
Assessment further information available available because it was collaborative, holistic, universal, and had an education
(No Reference focus. It was regarded as useful in presenting a child’s level to teachers
available) (1) and developing interventions collaboratively (1)
Object Related Schemes Children Piaget-based assessment of Observation of Level of cognitive Both therapists that identified Object Related Schemes worked with
Coupe and Levy (1985) (but cognitive development during behaviours in development in children. One found that it provided good information on “learner
widely the sensori-motor period response to a months, as determined schemes” or when observing children with objects and the other stated
used range of by “schema age;” the that it gave quick information on the child’s cognitive level and could
with objects. Familiar age that corresponds be easily translated into intervention using objects
adults) adult presents a to the most sophisti-
series of cated scheme shown
elicitation
activities
Below are assessments mentioned by 1 SLT
Assessing and Children APEC is a course introducing No further No further information This assessment was favoured because of its links with the national
Promoting Effective an assessment framework and information available curriculum which leads easily into setting goals for use within the
Communication teaching approaches. It available child’s communication environment. It was reported as easy use and as
(APEC) covers developmental stages, such, good for use with teachers, to train other staff and with families
Bolton, G. (2004). breakdowns in language and for joint observation
APEC 2 (Assessing using context to develop
and Promoting language
Effective
Communication;
APEC references
unavailable).
(as developed at The
Redway School by
Latham & Miles,
1996, 2001; David
Fulton Publishers)
Boehm—Test of Basic Children Used to identify clients who Verbal instruc- Provides information This was used by the SLT to assess children’s understanding of concepts.
Concepts Boehm might be at risk of learning tion is on understanding of It was found easy to use and helped to identify areas for intervention
(1986) difficulty. Assesses 26 basic presented to linguistic concepts
Published for the British Institute of Learning Disabilities
(Continues)
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A P P E N D I X 1 (Continued)
356
Communication Matrix Children Free assessment tool to Observation and Descriptive profile of This was mentioned for its easy use in assessing communicative
Rowland (2013) & adults provide communication completion by communication functions and means with this information feeding into new target
status, progress, and unique family member behaviours setting, while at the same time providing a baseline for evaluation
needs of early stage or carer
communication.
Online checklist of communi-
cation behaviours
Communication Adults Assessment of communicative Questionnaire Final outcome is a This was used with adults with PIMD to determine comprehension of
Assessment Profile abilities of adults with severe completed by profile of language vocabulary and sentence length
(CASP) to mild intellectual disabilities. carer/ strengths and
Published for the British Institute of Learning Disabilities
(Continues)
CHADWICK et al.
A P P E N D I X 1 (Continued)
Reynell Developmental Children Identifies speech and language Uses toys/ Standardized scores for Only parts of the Reynell were used by the SLT who mentioned it. One
Language Scales delay and impairment in objects and receptive and of the main advantages was its accessibility in terms of eye pointing (at
(RDLS) young children. Tests for pictures. Clients expressive language the pictures), with the caveat that the assessment does need to be
Edwards et al. (2011) expressive and receptive point or (Aged 2–7;6) adjusted to the particular needs of each child
language abilities. Has respond
multilingual toolkit verbally to
prompts
Symbolic Play Test Children Test to identify early skills Observation of Standardized score for This was chosen for its low linguistic demands on children, and the
(SPT) required for language play with small levels of concept specific information that could be gained about early play and
Lowe and Costello development; uses play with objects formation or conceptual development
(1988) miniature objects in 4 presented symbolization
different situations systematically observed through play
to the client on
4 occasions
Use of Language Not No further information No further No further information None given
questionnaire known available information available
Non-verbal communi- available
cation schedule
(No reference
available)
Assessing Adults Training package that included No further No further information None given
Communication “Communication” as one information available
Together (ACT) section out of 6 all related to available
Bradley (1991) meeting the needs of adults
with PIMD. Within this, was
“assessing and developing
communication”
Non communication focus
P-scales Children Breakdown of curriculum For use by Information related to P-Scales provided a shared language for joint work and joint target
UK Department for targets into very small teachers: curriculum targets at setting between education colleagues and the SLT who mentioned
Education, (2014), incremental steps descriptors of P-scale level using them. There is an acknowledgement that P-Scales are not
Performance—P Scale targets available formally considered an assessment, but the value of including teachers
attainment targets for all areas of and Learning Support Assistants in making “best fit” judgments based
Published for the British Institute of Learning Disabilities
for pupils with special the curriculum on their knowledge of the child proved useful
educational needs at for assessment
gov.uk and planning
purposes
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A P P E N D I X 1 (Continued)
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Assessment & Reference groupa Information gathered is gathered analysed & data output Specific rationales given for choosing published assessments
DisDAT Disability Adults Provides carers with details Structured Appearance and None given
Distress Assessment (but may about how adults with PIMD observation of behaviour when
Tool be used might show that they are individuals content is contrasted
Regnard et al. (2007) with experiencing pain with appearance and
(Northumberland children) behaviour when
Tyne and Wear HNS person is distressed.
Trust & St. Oswalds The Clinical decision
Hospice). distress checklist is
used to hypothesis
possible causes of
distress so they can be
managed. A 5-level
statement on
Published for the British Institute of Learning Disabilities
communication level is
included
a
We have indicated the groups for which the assessments were initially developed. This does not necessarily mean they are inappropriate for other age ranges, where this is the case we
have indicated this. Clinician and professional judgements will have bearing on this decision.
CHADWICK et al.
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