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Local service provision of Augmentative and Alternative Communication and communication aids in England

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BACKGROUND: Provision of Augmentative and Alternative Communication (AAC) interventions have been acknowledged to be highly variable in England and elsewhere. OBJECTIVE: The aim of the project described in this paper was to provide data to inform service planning and delivery of services delivering AAC including communication aids. METHODS: A survey was developed by an expert group and administered by telephone interview to service managers of primary and secondary services providing AAC interventions at a local level in England and data were included from two hundred and twenty respondents. RESULTS: Services included had mean caseload sizes of 0.09% of the catchment population for AAC provision, with a mean of 0.017% of the catchment population for high tech communication aids. Significantly higher levels of caseload and spend were reported for services working with children and young people as compared to those working with adults. Mean levels of unmet need for AAC equating to approximately one in every eight individuals on services' caseloads were reported. CONCLUSIONS: Although these data should be treated with caution, they suggest a significant level of variation of provision of AAC by local services.
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PROVISION OF AAC IN ENGLAND
1
Local Service Provision of Augmentative and Alternative Communication and
Communication Aids In England
Simon Judge, Victoria Johnson
University of Sheffield, School of Health and Related Research
Barnsley Hospital NHS Foundation Trust
Author Note
Simon Judge, Barnsley Assistive Technology Team, Barnsley Hospital NHS Foundation Trust
& University of Sheffield, School of Health and Related Research;
Victoria Johnson, Barnsley Assistive Technology Team, Barnsley Hospital NHS Foundation
Trust.
Corresponding Author: Simon Judge, Barnsley Assistive Technology Team, Barnsley
Hospital, Gawber Road, Barnsley, S75 2EP. simon.judge@nhs.net 01226 43 2159
Declaration of Interests Statement
The authors disclose they have no financial or other interest in objects or entities
mentioned in this paper.
PROVISION OF AAC IN ENGLAND
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Abstract
BACKGROUND: Provision of Augmentative and Alternative Communication (AAC)
interventions have been acknowledged to be highly variable in England and elsewhere.
OBJECTIVE: The aim of the project described in this paper was to provide data to inform
service planning and delivery of services delivering AAC including communication aids.
METHODS: A survey was developed by an expert group and administered by telephone
interview to service managers of primary and secondary services providing AAC
interventions at a local level in England and data were included from two hundred and twenty
respondents.
RESULTS: Services included had mean caseload sizes of 0.09% of the catchment population
for AAC provision, with a mean of 0.017% of the catchment population for high tech
communication aids. Significantly higher levels of caseload and spend were reported for
services working with children and young people as compared to those working with adults.
Mean levels of unmet need for AAC equating to approximately one in every eight individuals
on services’ caseloads were reported.
CONCLUSIONS: Although these data should be treated with caution, they suggest a
significant level of variation of provision of AAC by local services.
Keywords: Incidence, prevalence, caseload, service delivery, communication aids,
AAC
PROVISION OF AAC IN ENGLAND
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Local Service Provision Of Augmentative and Alternative Communication and
Communication Aids In England
Augmentative and Alternative Communication (AAC) is a key intervention for
children and adults who are unable to communicate through speech. AAC interventions
include strategies and therapy involving no equipment, those involving paper and other low
tech resources and those involving powered ‘high tech’ communication aids. In their state of
the art literature review of ‘high-technology communication devices’ Baxter et al (1) report
that “the literature describes custom-made communication aids which provide voice output
(VOCAs), also referred to as speech-generating devices (SGDs). In addition, there is software
which can be used on standard personal computers or laptops which provide a voice output.”
Light and McNaughton (2) also describe the more recent ‘mobile technology revolution’ that
has impacted on the AAC field.
A number of authors have identified that AAC services have been inconsistently and
inequitably provided in the United Kingdom (UK). A review by John Bercow, a UKMember
or Parliament, found no consistent or equitable system locally, regionally or nationally for
ensuring that those who needed communication aids received them (3) and concluded that the
needs of many children and young people were still not being met and that “children and
young people who require AAC face a particular struggle to have their needs met under the
current commissioning arrangements” (p. 40). A further report completed by Gross following
a two year UK government role also highlighted significant variation in the makeup, quality
and level of provision (4).
Both local (primary and secondary) services and regional (specialised) services are
involved in the provision of AAC and aided communication in the UK and at the time of this
project there was no standard model of provision of services providing AAC in the UK.
Although in most localities services providing AAC were hosted as part of the National
PROVISION OF AAC IN ENGLAND
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Health Service (NHS), a variety of different sectors were also involved in some areas
including education and social care. AAC services were also delivered from varying
departments (e.g. speech and language therapy or disability services) and trusts (e.g.
community or acute). Funding of communication aid provision was also highlighted by
Gross and others as varying significantly throughout the UK both in its availability and the
source of funding (e.g. from health, education or charitable sources).
There is little epidemiological evidence available about the provision of AAC or
communication aids. A systematic review (5) highlighted some limited investigation into
aspects of service provision but did not identify any papers that described or evaluated
different models of service provision, standardised methods for describing services or any
standard audit or reporting tools. Both Gross (4) and Creer et al. (6) estimate that 0.5% of the
population may benefit from AAC strategies.
Other studies have examined rates of provision and use of AAC in the UK; however,
there is an apparent paucity of these studies or data sets and all have limited applicability:
Clarke et al. (7) provide an analysis of data from a national education initiative that funded
and provided communication aids and reported referrals to the project over the two year
period as 0.22% of the population of pupils with special educational needs; Murphy et al. (8)
report a survey in 1991 of all those who had cerebral palsy living within Scotland using AAC
systems, this identified 225 individuals; more recently Cockerill et al. (9) provide data from
the a total population registry study of children with bilateral cerebral palsy and report that
32% were provided with one or more types of AAC.
The literature on the use of AAC from outside of the UK also appears limited. Data
reported refers to specific populations (particularly children and young people) or
environments, for example: survey data of pre-schoolers within special education services in
Pennsylvania, USA (10); survey data including reported use of AAC and powered
PROVISION OF AAC IN ENGLAND
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communication aids within the population of children and young people with complex
communication needs in New Zealand (11); the uptake of aided AAC by individuals with
‘intellectual disability’ in 26 US states (12); and registry data on the uptake of AAC by
children with Cerebral Palsy in Norway (13).
Given this lack of information, the overall aim of the project in which this work was
carried out was to gather data that could inform AAC service commissioning and design in
the UK.
Method
The survey was developed over a two-month period. Initially, the tool was referenced
against the Communication Matters AAC Service Standards (14) and prior work surveying
tertiary services (15). The tool was then developed further through consultation with a group
of six expert AAC practitioners nominated by consortia representing each of four regions of
England. The group was involved in a group critique and edit of the initial draft survey and
then in providing Delphi style email feedback on twelve further rounds of revisions. Finally,
the survey was piloted with seven participants to check the understanding of the questions
and to check the feasibility and acceptability of the survey to the participants. A small number
of questions required further explanation at the piloting stage and so supplementary guidance
and an interviewers’ script was developed. The survey was designed to provide nominal,
ordinal and discrete data, rather than free text data that would require coding or interpretation.
A set of definitions was developed to cover every term used in the survey.
Identification
In order to identify appropriate services within the available resources, a snowballing
approach was used based on a national listing of more specialised services. Each service on
this list was contacted and a list of all local (primary or secondary) services with an AAC
PROVISION OF AAC IN ENGLAND
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remit known to them was requested. These services were then contacted and the process was
repeated until no further services could be identified.
Inclusion and Exclusion Criteria
Inclusion criteria were defined as: services with a remit across a defined geographical
area or across a defined population and area; and that are involved in the provision of AAC
services, equipment or support or have a caseload including people with speech, language
and communication needs where it would be expected that there would be an AAC need.
Exclusion criteria were defined as services without a remit across a defined
geographical area or population (e.g. private consultancies or some charitable organisations).
Protocol
Interviewers were trained by the authors in administering the survey and in the
definitions used. An interviewer from each region followed an agreed protocol in gathering
data in their region. Interviewers contacted the service manager for each identified service
and arranged a telephone interview. Some respondents requested to be able to look up some
data (particularly caseload data) and so in some cases respondents were sent supplementary
data collection forms.
The decision to administer the survey was made for a number of reasons: this was the
first time a survey such as this had been carried out and thus there was no familiarity with the
content, terms or format of the survey; consultation with the expert group identified that
terms and definitions used within the field of AAC are interpreted differently; and models of
service delivery are also known to be different as well as being differently described.
Analysis
The data were collected using an online data collection tool developed by an
independent contractor (Document Capture Co. - DCC) designed for secure online data
collection and hosted on DCC’s secure servers. An online dashboard of simple descriptive
PROVISION OF AAC IN ENGLAND
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statistics of the collected data per region was also implemented by DCC using Qlikview TM 1
software. On completion of the surveying, the data were exported as a CSV file.
The complete data set was imported into SPSS TM 2 software to allow manipulation of
the data. The following steps were undertaken to create a complete, processed, data set:
firstly, the geographical areas reported by each respondent were coded into Local Authority
District (LAD) codes; corresponding population and geographical area data were calculated
by looking up the LAD code area against the corresponding UK population estimates using
ExcelTM3. Population data were then calculated for the age groups reported by the service
and an SPSS script was used to calculate appropriate values as a percentage of the services’
catchment populations and to generate descriptive statistics.
Results
In total, respondents from 264 services across England (population 52 million) were
surveyed. All respondents were service managers. Only those services meeting the inclusion
criteria were included (n=220). The 44 responses excluded did not report covering a defined
geographical catchment population. These respondents reported either covering a non
geographical catchment such as a school, an in-patient or acute ward, or had selective
national or regional coverage, such as a private practitioner. Of those services included, 66%
reported they were commissioned (funded) by the NHS, 13% by education, 29% from mixed
sources, 16% from other sources and none reported being commissioned via social care or
charity sources. Fifty seven percent of respondents reported that the data provided were
sourced from “estimates based on my own experience.”, 22% of respondents provided data
which had been extracted from a database.
Caseload Information
Respondents reported the age ranges of individuals that their services were provided
to by choosing the appropriate group(s): all ages; pre-school; primary school; secondary
PROVISION OF AAC IN ENGLAND
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school; further education; adults; other. These data were then coded into either adult only
(adults and/or further education groups), children only (pre-, primary or secondary school
groups) or all ages (all ages or where one or more child groups and the adult group were
reported). As can be seen in Figure 1, 50% of respondents reported providing services to
adults only and 42% reporting providing services to children and young people only (n=220).
Only five percent reported providing to a service to all ages.
INSERT FIGURE 1 HERE
The aetiologies of individuals most frequently seen in the service were ranked by
respondents for their caseload of individuals using AAC and also using aided AAC. The
distribution of the mean values is shown in Figure 2 (ordered by the mean rank for aided
AAC). Cerebral palsy, other learning disabilities and autistic spectrum disorder were ranked
as most frequently seen within services for both AAC and aided AAC.
INSERT FIGURE 2 HERE
Caseload Data
Respondents reported the total number of individuals on the service’s current
caseload; the number seen in the last 12 months and the unmet need. These data were
requested to be broken down by the unaided AAC caseload, the low tech and the high tech
aided communication caseloads (see Table 1 for the definitions used). Unmet need was
defined as those who “do not use but could benefit from using this type of AAC”. Caseload
was defined as “The number of people that are currently receiving or have been identified to
receive one or more of the service components for AAC listed in the glossary.”
INSERT TABLE 2 HERE
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Table 2 and Table 3 provide the descriptive statistics for these data. Figure 3 and
Figure 4 show histograms of the caseload data for the total AAC caseload and the high-tech
communication aid caseload, calculated as a percentage of the service’s catchment
population. The mean total AAC caseload reported was 0.09% of the catchment populations,
n=180, SD = 0.183. The mean high tech communication aid caseload reported was 0.017%
of the catchment populations, n=151, SD = 0.027.
INSERT TABLES 3 and FIGURES 3&4 HERE
A one-way ANOVA test was carried out to test for variations in the provision rate by
age groups served. Provision rates to each age group varied significantly for both the high
tech communication aid caseload, F(2, 148) = 15.375, p = 0.000, and for the total AAC
caseload, F(2, 177) = 21.227, p = 0.000. Figure 5 illustrates the disparity in rates of reported
caseload for high tech communication aid provision.
No significant difference in provision rates (using one-way ANOVA) was found
between the four regions of England F(3, 147) = 0.584, p = 0.627.
INSERT FIGURE 5 HERE
The mean number of new referrals reported per year was 0.039% of the catchment
populations, SD = 0.110, n=158. The mean yearly referral rate equated to 42% of the mean
caseload value reported.
The mean unmet need for AAC reported was 0.0109% of the catchment populations,
SD = 0.02009, n=128. Unmet need reported relating to high tech communication aids was
estimated by respondents at 0.0038% of their catchment populations, SD = 0.00546, n=86.
PROVISION OF AAC IN ENGLAND
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Communication Aid Provision
Forty four percent of services (n=220) reported providing long term provision of
communication aids, with 29% reporting provision being funded from their service budget.
Seventeen percent of services responded that they had no access to a loan bank with 40%
accessing a loan bank from within their service and 43% accessing it from other sources. Of
those who did report having access to a loan bank, 12% reported that it was sufficient for
their needs (n=174), whilst 51% felt the loan bank was insufficient for their needs.
Sixty Eight percent of services reported that they did not have “access to funding for
equipment for loan bank or library items” via the service budget (n=169). The mean loan
bank size was 23 devices, SD=29.1, n = 130 with ‘One to eight message devices making up
the largest part of this on average (mean=7, SD=12.5, n=130).
Summing the total equipment funding (this could be from any source - i.e. not just
services’ budgets) in the previous 12 months gave a total £850,000. The total figure reported
for spending on loan bank equipment was £892,000. The loan bank and provision spending
was totalled to obtain a total equipment spend per service. 50% of the total spend reported
was by health services and 22% of the spend by Local (Education) Authorities (n=130). The
mean reported total spend equated to £0.10 per head of the catchment populations, SD=0.20,
n=130. Mean spend by services providing to children and young people (only) was
significantly higher than that on adults (only) and that by services providing to adults and
children (one-way ANOVA F(2, 123) = 2.988, p = 0.054). Rates of total equipment spend
reported across each of the four regions did not vary (one-way ANOVA, F(3, 122) = 1.224, p
= 0.304) nor by sector ( F(3, 116) = 0.491, p = 0.689).
Discussion
The data reported in this paper from primary and secondary AAC services in England
should assist with service planning and commissioning of AAC services.
PROVISION OF AAC IN ENGLAND
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Significantly greater levels of provision and spending by services working with
children and young people were found when compared to adults. There could be a number of
reasons for this, including the method and nature of this survey, however other reasons could
be hypothesised: there may be a greater need for AAC in paediatric populations as a result of
the epidemiology of conditions; there may be a paediatric bias in levels of service provision;
there may be institutional use of AAC in education that is not supported in adulthood; it may
be that AAC is used as an aid to language development; and it may be that there is a high rate
of abandonment of AAC in adulthood.
The caseload and referral data collected contributes to the evidence of incidence and
prevalence of AAC and high tech communication aid provision and use. The mean caseload
levels reported are below the potential levels of need estimated elsewhere (4),(6) however
this is to be expected as this survey was not designed to provide a complete population
estimate of need. However, it can be seen that the prior estimates are within the range of the
data reported here.
Respondents provided an estimate of unmet need within their catchment populations.
These data suggest that for approximately every eight individuals on a service’s caseload,
there may be one individual within the service’s catchment population with an identified
unmet AAC need and for every four individuals on a service’s high tech communication aid
caseload there may be one additional individual within the catchment population identified as
needing a high tech communication aid who has not been provided with one.
These data were collected prior to significant changes in the organisation of health
services within the UK that included AAC services. It is hoped that these data will provide a
bench mark that can be used in future studies or audits against which to evaluate these
changes. Matching epidemiological information with data reflecting actual provision via
services is important for informing the commissioning and delivery of services (16). These
PROVISION OF AAC IN ENGLAND
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data can be used to influence the commissioning of local and specialised AAC services within
the UK and elsewhere as they provide evidence to support the identification of a level of need
within a population. National audit can also be a tool for promoting service improvement (17)
and it is also hoped that the survey developed for this study can be used to form the basis of a
regular audit of AAC service provision.
Although the data presented represents the largest survey of services of this type to
date in the UK, the data should be viewed with caution. All the data reported had large
standard deviations, although this in itself is an interesting result, potentially highlighting
considerable variation in service models and provision as well as challenges in data
collection. The sampling method was in essence opportunistic and this may be a biased
sample (of the most easily identifiable services). In addition, most of the data were reported
by respondents from their memory rather than formal extracts from databases. However, the
method used in administering the survey and carefully defining all terms was designed to
ensured that the quality and comparability of the data was as high as practicable
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Acknowledgments
This work was funded as part of a UK Government grant from the Department for
Education.
With thanks to the DfE AAC Project consortium members, with particular note to the
expert consultation group. With additional thanks to Dr Amanda Hynan, for motivational and
editing support.
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Notes
1. QlikviewTM is a registered trademark of QlikTech International, PA.
2. SPSSTM is a registered trademark of International Business Machines Corporation, NY.
3. ExcelTM is a registered trademark of Mircosoft Corporation, WA.
4. Tableau Public Software is software by Tableau Software, Inc, WA.
PROVISION OF AAC IN ENGLAND
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References
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Communication Devices: A State of the Art Review. Folia Phoniatrica et Logopaedica.
2012;64(3):137-44.
2. McNaughton D, Light J. The iPad and Mobile Technology Revolution: Benefits and
Challenges for Individuals who require Augmentative and Alternative Communication.
Augmentative and Alternative Communication. 2013 05/27/;29(2):107-16.
3. Bercow J. The Bercow Report: A Review of Services for Children and Young People
(0 to 19) with Speech, Language and Communication Needs. DCSF; 2008.
4. Gross J. Augmentative and alternative communication: a report on provision for
children and young people in England. The Communication Trust; 2010.
5. Baxter S, Enderby P, Evans P, Judge S. Barriers and facilitators to the use of high-
technology augmentative and alternative communication devices: a systematic review and
qualitative synthesis. International Journal of Language & Communication Disorders.
2012;47(2):115-29.
6. Creer S, Enderby P, Judge S, John A. Prevalence of people who could benefit from
augmentative and alternative communication (AAC) in the UK: determining the need:
Prevalence of the need for AAC in the UK. International Journal of Language &
Communication Disorders. 2016 11/01/;51(6):639-53.
7. Clarke MT, Donlan C, Lister C, Wright J, Newton C, Cherguit J. The provision of
communication aids to children in England: an analysis of applications to the Communication
Aids Project. Child: Care, Health and Development. 2007;33(5):569-75.
8. Murphy J, Marková I, Moodie E, Scott J, Boa S. Augmentative and alternative
communication systems used by people with cerebral palsy in Scotland: Demographic survey.
Augmentative and Alternative Communication. 1995 01/01/;11(1):26-36.
9. Cockerill H, Elbourne D, Allen E, Scrutton D, Will E, McNee A, et al. Speech,
communication and use of augmentative communication in young people with cerebral palsy:
The SH&PE population study. Child Care Health Dev. 2014 03/01/;40(2):149-57.
10. Binger C, Light J. Demographics of Preschoolers Who Require AAC. Language,
Speech, and Hearing Services in Schools. 2006 07/11/;37(3):200-8.
11. Sutherland D, Gillon G, Yoder D. AAC use and service provision: A survey of New
Zealand speech-language therapists. Augmentative and Alternative Communication. 2005
01/01/;21(4):295-307.
12. Stancliffe R, Larson S, Auerbach K, Engler J, Taub S, Lakin C. Individuals with
Intellectual Disabilities and Augmentative and Alternative Communication: Analysis of
Survey Data on Uptake of Aided AAC, and Loneliness Experiences. Augmentative and
Alternative Communication. 2010 06/01/;26(2):87-96.
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13. Andersen G, Mjøen T, Vik T. Prevalence of Speech Problems and the Use of
Augmentative and Alternative Communication in Children With Cerebral Palsy: A Registry-
Based Study in Norway. Perspectives on Augmentative and Alternative Communication.
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14. Communication Matters. Augmentative and Alternative Communication
(AAC) Services Standards. 2012.
15. S. Judge, P. Enderby, S. Creer, and A. John, Provision of powered communication aids
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PROVISION OF AAC IN ENGLAND
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Tables
Table 1
AAC Definitions Used
Aided Communication
Aided communication is a subset of AAC which refers to those
methods of communication which involve using additional
equipment, such as picture, letter or word boards or books and
technology based systems such as voice output communication
aids.
Low-tech aided
communication:
These systems are those which do not require power to function
such as picture, letter or word boards or books.
High-tech aided
communication
These systems require some power to function, ranging from
systems such as single recorded message output devices to more
complex systems which take text or symbol input and produce a
synthesised speech output.
PROVISION OF AAC IN ENGLAND
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Table 2
Absolute Caseload and Unmet Need Reported
Variable
N
Max
Sum
Mean
SD
Caseload
Unaided AAC
111
1420
7093
63.90
169.210
Low tech aided AAC
157
958
9035
57.55
105.089
High tech aided AAC
154
210
3359
21.81
31.044
Total: all AAC
184
2443
19938
108.36
230.303
Unmet need
Unaided AAC
64
80
373
5.83
14.240
Low tech aided AAC
93
100
785
8.44
14.463
High tech aided AAC
88
40
503
5.72
7.532
Total: all AAC
132
130
1919
14.54
22.004
Referrals
Unaided AAC
87
1420
3645
41.90
171.338
Low tech aided AAC
126
958
5072
40.25
116.155
High tech aided AAC
120
600
2192
18.27
57.440
Total: all AAC
162
2443
11184
69.04
244.053
Note. Min = Minimum; Max=Maximum; Sum = Summation
PROVISION OF AAC IN ENGLAND
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Table 3
Caseload and unmet need reported per percentage of catchment populations
Variable
N
Min
Max
Sum
Mean
SD
Caseload
Unaided AAC
111
0
.70
6.1
.055
.121
Low tech aided AAC
154
0
.50
7.6
.049
.088
High tech aided AAC
151
0
.23
2.5
.017
.027
Total: all AAC
180
0
1.22
16.6
.092
.183
Unmet need
Unaided AAC
64
0
.08
.34
.0054
.01580
Low tech aided AAC
91
0
.07
.60
.0066
.01189
High tech aided AAC
86
0
.03
.33
.0038
.00546
Total: all AAC
128
0
.14
1.39
.0109
.02009
Referrals
Unaided AAC
87
0
.60
2.08
.024
.086
Low tech aided AAC
123
0
.40
2.72
.022
.052
High tech aided AAC
117
0
.13
1.11
.009
.018
Total: all AAC
158
0
1.03
6.12
.039
.110
Note. Min = Minimum; Max=Maximum; Sum = Summation
PROVISION OF AAC IN ENGLAND
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Figures
Adults and
Children, 16,
7%
Children and
Young
People, 93,
42%
Adults, 109,
50%
Other, 2, 1%
Figure 1. Reported age groups served (coded) count and percentage
PROVISION OF AAC IN ENGLAND
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.00 .50 1.00 1.50 2.00 2.50 3.00 3 .50 4.00 4.50 5.00
Head/neck Cancer
Other
Dementia/Alzheimers
Other Non Progres sive Neurological
Progressive Neuro-Muscular
Sensory Impairments
SLI (includig Dysprax ia)
MS
Parkinsons
Head Injur y
Other Progressive Neur ological
Genetic Disor ders
MND
Stroke
Physical D isability
Autistic Spectrum
Other Learning Disabilit ies
Cerebral Palsy
Mean Rank
AAC Me an
Aided Mean
Note: Ranking: 10 = most frequently seen, 1 = least frequent, 0 =null responses
Figure 2. Mean ranking of AAC and Aided AAC Aetiologies (ordered by mean Aided AAC
ranking)
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Figure 3. Histogram of AAC caseload reported (per % population)
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Figure 4. Histogram of High tech communication aid caseload reported (per % population)
PROVISION OF AAC IN ENGLAND
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.0057
.0152
.0290
.0000 .0050 .0100 .0150 .0200 .0250 .0300 .0350
Adults
Adults and Children
Children and Young People
High Tech Caseload - % population
Figure 5. Caseload of High Tech Aided AAC as % population by age group
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Introduction The current practice of service delivery in Germany for people with complex communication needs (CCN) who are in need of augmentative and alternative communication (AAC) is characterised by diverse problems, including a lack of clarity in the responsibilities of the service providers involved. To address these issues a new service delivery model has been put in place, implemented in three AAC counselling centres for patients with a particular health insurance across Germany. The implementation of a new service delivery model aims to improve individualised service delivery. The model goes beyond standard care by adding case management, counselling, AAC training and, if needed, AAC therapy. This study aims to evaluate the effectiveness of this complex intervention. Methods and analysis In consideration of the complexity of the new service delivery model, formative and summative evaluation will be conducted. The formative evaluation will provide data based on qualitative and quantitative assessments of the competences and perspectives of all involved stakeholders, including a proxy measurement of persons with CCN. The summative evaluation will include a controlled study design as the new service delivery model will be compared against the service delivery in an existing contract and against data gathered from caregivers of AAC users provided with standard care. With the exception of the individual interviews the data will be collected from proxies—that is, informal and formal caregivers. Ethics and dissemination Data collection, storage and evaluation meet the currently valid data protection regulations. Consultation by the responsible data protection officer of the Oldenburg Medical School and a positive vote from its Ethics Committee were obtained prior to the start of the study. Dissemination strategies include the presentation of the obtained data and results in the form of publications and at conferences. Trial registration number DRKS00013628.
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Abstract The iPad and other mobile technologies provide powerful new tools to potentially enhance communication for individuals with developmental disabilities, acquired neurogenic disorders, and degenerative neurological conditions. These mobile technologies offer a number of potential benefits, including: (a) increased awareness and social acceptance of augmentative and alternative communication (AAC), (b) greater consumer empowerment in accessing AAC solutions, (c) increased adoption of AAC technologies, (d) greater functionality and interconnectivity, and (e) greater diffusion of AAC research and development. However, there remain a number of significant challenges that must be addressed if these benefits are to be fully realized: (a) to ensure the focus is on communication, not just technology, (b) to develop innovative models of AAC service delivery to ensure successful outcomes, (c) to ensure ease of access for all individuals who require AAC, and, (d) to maximize AAC solutions to support a wide variety of communication functions. There is an urgent need for effective collaboration among key stakeholders to support research and development activities, and to ensure the successful implementation of mobile technologies to enhance communication outcomes for individuals who require AAC and their families.
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There has been a rapid growth in recent years of available technologies for individuals with communication difficulties. Research in the area is currently underdeveloped with practitioners having a limited body of work on which to draw to guide the process of intervention. Concerns have been raised that this newly developed technology may have limited functional usage. This review aims to investigate the potential barriers and facilitators to high-technology AAC provision and its ongoing use. The aim of the analysis is to explore factors underpinning use rather than effectiveness, thus it synthesized data from predominantly qualitative and survey studies reporting the views and perceptions of AAC users or staff providing the devices. The review highlights the range of factors that can impact on provision and use of high-technology AAC, which practitioners should consider and address as appropriate in the intervention process. These include: ease of use of the device; reliability; availability of technical support; voice/language of the device; decision-making process; time taken to generate a message; family perceptions and support; communication partner responses; service provision; and knowledge and skills of staff. The work outlines how qualitative synthesis review methods may be applied to the consideration of published material that is not reporting outcomes data, and how this may provide valuable information to inform future studies. Practitioners should be aware of barriers and facilitators to successful use when making recommendations, and consider how barriers where present might be overcome. Aspects of service delivery such as ongoing technical support and staff training may require further consideration. The synthesis of evidence describing views of users and providers, and the implementation of high-technology AAC systems, can provide valuable data to inform intervention studies and functional outcome measures.
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AAC service provision in the United Kingdom (UK) has evolved since the first service dedicated to the provision of communication aids opened in 1986. Within the UK, many health and care services are provided via government funding; however, the assessment and provision of AAC and specifically of speech-generating devices (SGDs) is inconsistent and inequitable. The study reported in this paper aimed to collect information on levels of current provision of powered communication aids (the term used in the study to refer to SGDs) by UK service providers in 2013 with the intention of improving future estimates for need of services. A questionnaire survey was designed and data were obtained from 98 AAC services across the UK. Service providers reported the number of individuals known to be using powered communication aids and the mean value reported was 0.0155% of the services’ catchment populations. However levels of service provision reported were highly variable. Although the data reported must be treated with caution, it adds to the sparse literature on the topic, informs AAC service design and delivery in the UK, and acts as an indicative baseline measure for future service development.
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Background Commissioners and providers require information relating to the number of people requiring a service in order to ensure provision is appropriate and equitable for the population they serve. There is little epidemiological evidence available regarding the prevalence of people who could benefit from augmentative and alternative communication (AAC) in the UK. AimTo determine the prevalence of people who could benefit from AAC in the UK. Methods & ProceduresAn epidemiological approach was taken to create a new estimate of need: the prevalence of the main medical conditions and specific symptoms leading to the requirement for AAC were identified from the literature and AAC specialists were consulted to estimate the number of people who may require AAC. Outcomes & ResultsA total of 97.8% of the total number of people who could benefit from AAC have nine medical conditions: dementia, Parkinson's disease, autism, learning disability, stroke, cerebral palsy, head injury, multiple sclerosis and motor neurone disease. The total expectation is that 536 people per 100000 of the UK population (approximately 0.5%) could benefit from AAC. Conclusions & ImplicationsTo provide accurate figures on the potential need for and use of AAC, data need to be consistently and accurately recorded and regularly reviewed at a community level. The existing data suggest an urgent need for more accurate and up to date information to be captured about the need for AAC in the UK to provide better services and ensure access to AAC strategies, equipment and support.
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Augmentative and alternative communication (AAC) services for people with complex communication needs in New Zealand were investigated by surveying speech-language therapists. Two separate survey forms were developed and mailed to speech-language therapists who worked with either students or adults. In both survey forms, information was requested about (a) the provision of AAC intervention, (b) the professional needs of speech-language therapists providing AAC services, and (c) demographic information about students with complex communication needs. Low-tech communication options and sign language were the most commonly reported AAC strategies used by adults and students with complex communication needs. Students aged 5 – 10 years received the most AAC intervention. Cerebral palsy, intellectual disabilities and autism spectrum disorders were the most commonly reported etiologies of students who used AAC. A total of 86% of the respondents indicated a desire for further AAC information or training.
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The present survey shows that in 1991–1992 there were 72 children, 37 adolescents, and 107 adults with cerebral palsy in Scotland who used some form of an augmentative and alternative communication (AAC) system. Among these, 61% were males and 39% were females. There has been a substantial increase in the use of AAC systems over the last 3 years and, indeed, over 50% of users have had their AAC systems no longer than 1 year. The AAC systems identified in this study were broadly divided into low-technology and high-technology systems. Although the data show a tremendous increase in the use of high-technology systems, the low-technology systems still accounted for more than 50% of all AAC systems used at present. There were a variety of methods of access both with low- and high-technology systems, indicating that a considerable proportion of users must rely on methods of access other than hand pointing. The majority of high-technology systems had voice output and all of the low-technology systems required listener interpretation (reading) of the message. It is important that, in addition to AAC systems, the users employed both their own idiosyncratic forms of nonverbal communication as well as other, more formalized, symbolic systems. Although the findings indicate that the great majority of users employed their AAC systems both in formal and informal situations, more investigations are necessary to establish why 22.2% of users employed their AAC systems only in formal (i.e., therapy and school) contexts.
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Background: Communication is frequently impaired in young people (YP) with bilateral cerebral palsy (CP). Important factors include motoric speech problems (dysarthria) and intellectual disability. Augmentative and Alternative Communication (AAC) techniques are often employed. The aim was to describe the speech problems in bilateral CP, factors associated with speech problems, current AAC provision and use, and to explore the views of both the parent/carer and young person about communication. Methods: A total population of children with bilateral CP (n = 346) from four consecutive years of births (1989-1992 inclusive) with onset of CP before 15 months were reassessed at age 16-18 years. Motor skills and speech were directly assessed and both parent/carer and the young person asked about communication and satisfaction with it. Results: Sixty had died, eight had other conditions, 243 consented and speech was assessed in 224 of whom 141 (63%) had impaired speech. Fifty-two (23% of total YP) were mainly intelligible to unfamiliar people, 22 (10%) were mostly unintelligible to unfamiliar people, 67 (30%) were mostly or wholly unintelligible even to familiar adults. However, 89% of parent/carers said that they could communicate 1:1 with their young person. Of the 128 YP who could independently complete the questions, 107 (83.6%) were happy with their communication, nine (7%) neither happy nor unhappy and 12 (9.4%) unhappy. A total of 72 of 224 (32%) were provided with one or more types of AAC but in a significant number (75% of 52 recorded) AAC was not used at home, only in school. Factors associated with speech impairment were severity of physical impairment, as measured by Gross Motor Function Scale level and manipulation in the best hand, intellectual disability and current epilepsy. Conclusions: In a population representative group of YP, aged 16-18 years, with bilateral CP, 63% had impaired speech of varying severity, most had been provided with AAC but few used it at home for communication.