Miyasaka A, Imoto T Electrophysiological characterization of the inhibitory effect of a novel peptide gurmarin on the sweet taste response in rats Brain

Following the initial framework development and deinition of the relevant terms the qualitative data was fully analysed and the full framework of AAC service delivery components was created.

This framework is shown in Figure 3.2 below and followed by the deinition and explanation of each component and its contributing features. For each component, the deinition (as agreed through the Delphi process) is initially presented highlighted in grey. A summary of the qualitative analysis of the data for this component is then presented.

This data is illustrated with quotations, these are highlighted in grey.

Figure 3.2: Components of AAC service delivery Key Point i

the qualitative data identiied all the components discussed as being required for effective provision and ongoing use of AAC and powered

communication aids: identiication; assessment, information and advice, loans, positioning and mounting, customisation, funding, maintenance, repair, ongoing review, support, integration, research

and development.

Key Point ii

there was consensus between professionals, AAC users and communication partners that all service components were required to facilitate an effective system of identiication, provision and use of

AAC.

Service components and deinitions:

Identiication of need for assessment for AAC:

The identiication that a person could beneit from further assistance with their spoken communication either through unaided communication techniques or aided communication equipment. This can include the

identiication of support and training needs of the person and their communication partners.

Prior to any formal assessment for aided communication the potential for AAC to help a person communicate needs to be identiied. Therefore, before ‘assessment for AAC’ is ‘identiication’.

The need for AAC and speciically for powered communication aids was described as being identiied through a number of channels, including: the person with

communication support needs themselves; a family member or carer or personal assistant; and someone working directly with the person, such as a teacher or SLT or OT. Within our data set, there were no examples of identiication of need for an AAC assessment from social services or nursing and residential homes.

The specialist centres for assessing people for AAC felt the local teams were ‘key’ to identifying need for

assessment for AAC for people. The specialists aimed to work closely with their local teams to ensure the right people were identiied through advice and training and building good relationships with those teams. Specialists in AAC were open to supporting local therapists in identifying need for AAC through developing competencies in the local teams.

‘You develop the competencies and the local therapists, they can identify if somebody needs something. They then ring you for advice.’ (Specialist AAC Centre)

In contrast, one parent described her dificulties in getting her sons’ needs for aided communication identiied by SLTs and other professions. At the time of the focus group (2012), she had only just managed to obtain an assessment for her two sons from an AAC Centre.

‘Our local community raised the money for them 10 years ago so they’ve been using Lightwriters, they’ve been using laminated pieces of paper with the alphabet.’... ‘10 years wait has been a bit of pain. Despite the fact that various social workers, speech therapists and all those people would have seen the guys actually typing. Nobody at any point were sort of saying, “Could we not do something more?” We actually were out there trying to make ourselves available for somebody to say, “Can we help you here? Can we provide something better? Have you been assessed? And that wasn’t forthcoming.’ (Parent of two adult aided communication users) The Specialists for AAC and the AAC Centres described identiication of need to their own specialist AAC services. Sometimes it was a direct approach from people and families, though the main people identifying need to them were SLTs.

‘The majority of referrals come from speech and language therapists. They also come from

team. But they may come from parents. We have open referral so anyone can refer.’

(Specialist AAC Centre)

The Focus Group members and the practitioners interviewed from Specialist Centres discussed the competencies required to assess for need for AAC and it was felt that the experience level and competencies of local staff around the person varied. The level of

competency seemed to be related to knowledge of what AAC could achieve, the previous training the local team had received and the level of experience within the local team of working with children and adults with complex needs who might need AAC and particularly powered communication aids.

Those practitioners who rarely saw anyone on their caseload with communication support needs for powered communication aids had fewer opportunities to build competencies around identifying people who may beneit from aided communication aids. Participants from local teams relected that they valued having access to specialists and frequently sought the advice of specialists for aided communication to provide information and advice on assessment for aided AAC including powered communication aids.

Some practitioners working regularly with people with complex needs requiring aided communication were able to develop expertise that allowed them to identify need for AAC for others. For example, those who worked in special schools or specialist settings had the opportunity to gain a higher level of experience and to develop the necessary competencies around AAC than those local teams working in non-specialist settings, such as community clinics or mainstream schools.

‘..the majority of the children that I’m referred had been referred from one of the complex needs schools or the preschool autism specialist or the pre-school child development unit specialist. That probably makes up 90% of the referrals to me... Those therapists have a higher level of knowledge and skills about AAC because obviously they’ve got more children in their caseload and using it and more experience....because they have seen it work with other children and they’ve seen children where it hadn’t worked.’ (Specialist AAC Centre)

The practitioners described instances where the team around the child had identiied the need for an assessment for a powered communication aid but the family did not want to take up the assessment as they had AAC strategies that worked for them.

‘...it depends on the team around the child really because some parents are of the opinion that they don’t need AAC because they communicate effectively without it and that they don’t think it will add much or anything to the communication of their child.’ (Specialist SLT AAC Centre)

Many of the specialist AAC centres described providing consultations for local practitioners on speciic matters and this did not involve the AAC centre assessing the person themselves rather using their knowledge of current technology to make recommendations for local assessment. Some centres provided equipment loans for a local assessment to be made while others provided the option to have a consultation without equipment loan.

‘...the consultation process, as well as doing formal assessments with provision, we do do these things that we call ‘consultations’ where there’s no

expectation of providing equipment...You would get a consultation but don’t expect to have a piece of equipment or assessment.’ (Specialist AAC Centre)

Key Point iii

the potential of persons with communication dificulties who could beneit from AAC needs to be recognised by people within their

environment as well as health, education and social care staff who need to be kept informed of technological and behavioural

developments and specialist services. Assessment for aided communication:

Assessment is an evaluation of the suitability of an individual to use aided communication which aims to match a person’s skills, capabilities, and environment to potential aided communication methods. The assessment can take into account the cognitive, communicative, language, speech, physical and sensory abilities and needs, including those that affect the method of accessing the devices. The assessment includes consideration of the environments, attitudes, personal actions, activities and participation as well as the aims and aspirations of the person and relevant stakeholders. It may include initial training and a period of equipment loan and trial.

Those practitioners whose role was around provision of appropriate AAC were asked to describe the process used to decide which type of AAC, and speciically powered aided communication, would beneit someone. The complexity of those needs could entail assessment by different practitioners, so while low tech systems were usually provided locally by the person’s own local team, assessment for high tech devices frequently involved further specialist assessment. The specialist assessment was described very differently depending upon the complexity of the case and what AAC services were commissioned and provided locally.

In the data gathered during this study, the participants included a range of practitioners from different

professions who were involved in the assessment team. The ‘team’ in an assessment for aided communication could include a number of disciplines according to the needs of the person being assessed and the complexity of the dificulties being assessed, the knowledge of technology and systems required. The teams were described as including SLTs, Occupational Therapists, Technicians, Clinical Scientists, Engineers, Teachers, Physiotherapists and Doctors. When discussing

assessment participants described a wide range of topics, factors and elements of service delivery. These have been further broken down below.

Assessment for AAC and Accessing Specialist Assessment for AAC

The participants described different types of service organisation for their local teams with different care pathways for their area. Responsibility for providing a local assessment for aided communication varied and could rest within health, education, or jointly or with independent providers. There were a range of

professions assessing at the local level. These included SLTs, teachers, educational psychologists, OTs, PTs, ICT/ AT staff.

Some participants were members of local teams and they described how they had differing levels of experience and knowledge around AAC and powered communication aids with some having limited knowledge of simple tools such as communication charts, whilst others were regularly providing relatively complex powered communication aids.

Some local SLTs described their experience in providing non-powered communication aids, such as, e-tran frames, communication charts, signs and symbol based paper systems but relected that they would not necessarily have the current knowledge of technology to assess and recommend speciic powered communication aids. It was in these situations when they described wishing to have a specialist in aided communication complete the

assessment.

Care pathways for referring a person to a specialist AAC centre were described with varying arrangements for the point of referral related to local policy and service level agreements. The referrals were described as originating more usually from practitioners although there were self-referrals from the person themselves, family members or from people working with them – their local ‘team’. It was felt by some that SLTs could appear to people seeking an assessment for powered communication aids as acting as gatekeepers to accessing specialist AAC centres.

‘My SaLT on my initial assessment said she did not know about electronic aides, “It wasn’t her thing”. The next visit was over three months later when I asked for a referral to AAC. She said that she didn’t think I needed a referral as it was only for complex cases. I have only problems with my speech at the moment... The only support I got was a promise to call me if there was spare iPad in the Store. I asked about microphones and she reluctantly agreed to think about it but this came from me. I felt like I was being a dificulty for her.’ (Adult with MND)

‘I was told that I did not need an assessment as lots of people just manage with an iPad but the SaLT was unable to give me advice. I was just told that she would look in the store for an iPad I could practice with because I refused to have one until I knew what it did as I had already downloaded two others; ‘Verbally’ which has too little space for people to read and when it has spoken it disappears; ‘Speak it’ does not have predicted speech.’ (Adult with MND)

The AAC and Aided Communication Assessment Process

Many factors were mentioned by practitioners in

describing the assessment process. There were variations according to how the AAC services for a population are structured, the speciications for the services around AAC and how AAC services are commissioned. Assessment was seen to have the three stages:

Stage 1 – Information gathering

Collecting a range of information from different sources on the person’s abilities, limitations, needs, wants and environment

Stage 2 – Matching the person to the powered communication aid

Considering the information gathered and matching this to the design features of AAC systems and devices

Stage 3 – Trial to evaluating the communication aid

Providing a system or device along with support and training for a period of trial. Observing and monitoring progress with the system or device.

Assessment visits for a powered communication aid

Stage 1 Information gathering prior to appointment

Different AAC specialist services described different set criteria for accessing their own AAC services. These varied across the country and were related to how services were structured and what the AAC service was contracted to provide e.g. assessment and recommendation, assessment and equipment trial.

Local practitioners described seeking specialist opinions from an AAC specialist or team of AAC specialists according to need and for various reasons.

‘It’s those children where the needs are not clear and different parts of the team are arguing, well arguing might be a bit strong but they’re assessing them in different ways.’(Specialist SLT AAC)

‘...we maybe need to look more at a sort of holistic approach so looking at specialist mounting systems, some of the more sort of high tech complex stuff that we just feel we don’t have the sort of resources or specialisms to access locally.’(Local Specialist SLT AAC)

One Specialist SLT AAC Centre described how their adult SLTs were experienced in working with AAC and so they did not need to provide the assessment. However, the AAC Centre did support the SLTs’ assessment of adult patients by providing a range of communication aids in the hospitals that they could use for assessment to evaluate whether the AAC device helped functional communication.

‘... adult therapists who have been around a very long time, they’re very skilled, so there were some pieces of equipment that I wouldn’t feel the need for an assessment for from me.’ (Specialist SLT AAC Centre) Where the assessment of a person was completed by a specialist team for AAC then the presence of a local practitioner/s and the ‘team’ around the person was often described as being encouraged as well as the presence of the person’s main communication partners. These people may include, for example, the local speech and language therapist, the specialist teacher, the teaching assistant in addition to the key carer and the family member.

Specialist teams described using the information in the referral forms to provide them with relevant information to allow them to identify speciic needs and to help them to identify which professional staff needed to be involved in the assessment process.

‘The process works in that…I’ve got a standard form for just basic second opinion with, some of the people ill it with basic biographical information, what they want from a second opinion, what the child’s achieving in terms of educational levels, ... whether they’re using signs or symbols or any other low-tech system, whether they’ve got any physical or sensory needs. You know, are there any professionals involved? - all of that basic information. And from that, I look at whether actually, someone else needs to be involved in the assessment.’ (Specialist AAC Centre)

‘....it’s got to be based on clinical reasoning. It’s got to be based on proper clinical assessment and a proper analysis of the needs and the different options that you’ve got to meet those need.’ (Specialist AAC Centre)

Stage 2 – Matching the person to the powered communication aid

Participants discussed a number of considerations they considered when matching a powered communication aid to a person. These factors included: the individual’s abilities, the capabilities of the device, where and how it will be used and the actual design of the communication device. The design of the aid was discussed in a number of contexts from its ability to meet requirements to its aesthetic and functional design.

Participants described how the development of

communication ‘apps’ for tablets has affected this process through making AAC software more available to a wide number of people. Practitioners reported that the lightness, portability and ‘coolness’ of mainstream tablets were often reasons cited for making them a popular choice . The fact they are mainstream items was also described as having an appeal, as was their ability to integrate both spoken communication with other aspects of communication and life. For example, they could also be used as a communication passport with the device holding pictures and narrative about the person. People described using them as an integral part of their everyday life to communicate, take pictures and share pictures, to access social media and the internet.

The practitioners reported an increased demand for support for using tablets and iPads in particular with people rejecting dedicated devices that practitioners felt would suit their abilities and needs better.

‘..we had a [PORTABLE VOCA] for a child more than capable of using it and loads and loads of lovely things on it and he completely rejected it, wanted his IPod ... with [AAC APP] and there’s only a few sort of applications and he used that more to shout to his mum I want a drink than he ever did the [PORTABLE VOCA]. The [PORTABLE VOCA] he just totally rejected. (AAC SIG Group Member)

‘He doesn’t want something that’s just a voice output device he wants something that does more…and he certainly doesn’t want something that makes him look different from other young men his age.’ (Specialist SLT AAC)

Whilst there was a greater emphasis on spoken

communication in the health sector there was a view that for certain people there needed to be a more holistic approach. The examples given were related to progressive neurological conditions where the person might initially need to access the computer for work or social media and then use the same access method for speech production.