Sally Boa and Lois Cameron

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Quality Indicators for AAC

• Sally Boa and Lois Cameron
• Funded by NHS Education Scotland
• Conducted by Talking Mats Limited and Capability
  Scotland

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Overview of Quality Indicators
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Aims

• To develop, in partnership with individuals who
  use AAC, a set of quality statements relating to
  the AAC service in Scotland

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How?

• On-line survey (27 responses)
• 4 Focus groups (2 with adults, 2 with children)
• 12 Individual interviews
• Range of areas (all NHS Scotland areas
  represented apart from Dumfries and Galloway,
  Grampian, Highland and Orkney)
• All data analysed using Framework Analysis

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Adapted the quality statements from
Communication report (CM 2012)

• Translated into user friendly questions under
  three headings
• People who work with me
• Information
• How AAC services work
• (Structured conversation for individual and focus
  group using Talking Mat framework)

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1. People who work with me 2. Information provided Process
1a. Know about me 2a. Outcomes of assessment and plan for implementation 3a. Stick to a care pathway
1b. Keep up to date with AAC and have access to training 2b. In a way that I can understand 3b. Gaining funding
1c. Know about AAC 2c. Who is who and contact details 3c. Local services
1d. Work as part of an AAC team 2d. named person/keyworker 3d. National services
1e. Talk about me to other members of the team 2e. Timescales 3e. Provide long-term support
1f. Take my preferences into account 2f. Funding 3f. Access to a second opinion
1g. Have time for me 2g. My care pathway 3g. Clear about when to refer on
1h. Put me in touch with other AAC users   3h. Work with Health, Education and Social work
1i. Involve me in decisions   3i. Provide trial equipment
1j. Involve me in target/goal setting   3j. Access to a range of equipment
1k. Look at my needs regularly   3k. Early introduction to AAC
1l. Provide training for me   3l. Clarity about who is keyworker
1m. Provide training for my family   3m. AAC is adapted to suit my needs
1n. Provide training in my wider environment   3n. Equal access to Assessment and intervention
1o. Check they have my consent to work with me    
1p. Work on their own    
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Individual and focus group interviews

• Capability Scotlands Disability Equality
  Advisors
• Different perspective
• Shared values

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Findings

• 10 Quality indicators for AAC services in
  Scotland were identified

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1.Training

• All participants felt that the people who worked
  with them should provide them training
• If a person does not know how to work their AAC
  aid then the speech therapist isnt doing their
  job (interview 8)
• Training should be provided for family and
  friends
• Its really important that my sons and the
  nurses who come in to look after me understand my
  machine.
• Not everyone agreed that this was as important as
  individual training
• someone has to learn and then they are the
  person that tells the others - family user is
  less important than the main user (interview 1)

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2.Values

• All participants agreed that it was important for
  AAC professionals to listen to their views and to
  really know you as a person
• They cant provide for your needs if they dont
  know you (Survey)
• Its important that the people I work with can
  understand what I'm saying and this takes a while
  to develop (interview 10)
• One participant commented that AAC professionals
  should be flexible and, as part of valuing
  individuals, should have the scope to work
  flexibly them
• We found that SLTs can get locked into a way of
  doing things. This is done here. (interview 1)

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3. AAC Keyworker

• Participants agreed that
• they should have a clear point of contact in
  relation to AAC
• Roles and responsibilities should be defined and
  explicit
• Really need to know about roles and
  responsibilities who does what what does the
  teacher do, what does the SLT do and what does
  the parent do (interview 1)

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4. 4. Involvement in decision making
somebody has to have awareness of what is
realistic in time scales and help you set
realistic targets (survey respondent) That you
should know how long things will take. People who
are disabled have to plan, therefore it is really
important to know how long things will take.
(Interview 8)

• Participants believed they should be
• involved in decisions
• kept informed
• Given information in a accessible form
• And that services should work together to achieve
  defined goals.

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5.Suitability and adaptability of AAC
equipment

• Participants believed that AAC equipment should
  be suitable and adapted to meet their individual
  needs
• Including developmental growth
• Future life changes
• Future technology changes
• Opportunities to access and trial a range of
  equipment was also seen as vital, as was a
  holistic approach

In our particular case AAC support is lifelong.
It has to be able to change according to the
challenges and continuum of life. Also the
quickly changing world of AAC in a modern
technological age. (Survey)
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Janets story

• Janet was formerly a very effective LLL (Language
  Living and Learning, a Minspeak-based programme)
  user on her Delta Talker.
• She then moved on to a Vantage system
• occupational therapist thought having a smaller
  device would give her a better range of movement.
  The new system had fewer keys than Janet was used
  to.
• Since getting her new device, Janet has found it
  extremely difficult to learn to use. It is
  particularly difficult for her to re-learn the
  placement of the buttons and how to access the
  correct layers on the new system.
• As a result, Janet prefers to use her
  communication book or to spell words out on her
  hi-tech device. (Focus group 3)

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6. Equal access to funding and
services

• we had to fund our sons own AAC as the one
  provided by our local NHS trust was unreliable
  (Survey)
• we were lucky we had a really great SLT who saw
  the underspend and got it but not everybody is
  that lucky. (interview 1)
• it shouldnt matter where you live or how much
  money you have there should still be the same
  access to services. (interview 5)
• Being in a remote location it might be
  unrealistic to have a local service, but strong
  local knowledge is brilliant, with the support of
  national service Survey

• Access to equipment and services should not
  depend on geographical location or whether they
  had a particularly good Therapists
• Opinion varied about whether services should be
  provided at a local or national level
• some preferred local but recognition that not all
  staff could be specialist and therefore a
  national service that could support the local was
  seen as important.

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7. The importance of support in the
event of breakdown

• Joe has no other means of communication when his
  Lightwriter isnt working. He doesnt even use an
  alphabet board to communicate. (Focus group 3)
• You kind of assume that everything will take a
  long time (interview 1)

• Several individuals were unable to fully
  participate in this project because their devices
  were either broken or inadequately maintained.
• Others explained that they had waited months or
  even years for their High-tech AAC machines to be
  fixed leaving them unable to communicate
  effectively.

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8. Transitional support (between AAC
systems)

• Participants highlighted that their programming
  and stored information can be lost when they make
  a transition from using one AAC device to
  another. Trialling new equipment can also be
  meaningless if the trial is too short and does
  not allow time for the machine to be properly
  programmed and for the individual to get used to
  it.
• David told the group that he had his new
  Pathfinder in the house for three months before
  he really knew how to use it properly. He felt
  there should be enhanced support when new
  machines are introduced losing all his short
  cuts was a real problem

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9. Suitability of design of equipment

• Particularly an issue for school age participants
  the cool factor
• colour
• weight
• Karen said that it was really important to her
  that her Talker was purple, because that is her
  favourite colour. Focus group 2

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10. AAC in the wider community

• One young focus group participant expressed
  anxiety at the idea of going to a respite service
  because she was worried that staff and other
  children would not be able to understand what she
  was saying.
• Im going to respite this weekend and Im
  worried people wont understand me (Focus group
  2)
• A sense of confusion for some of the younger
  participants about why AAC works in some settings
  and with some people but not others
• I can use my machine with nice people and
  Its easier with my Mum and Dad. She then went
  on to say, When Im out people dont understand
  me (Focus group 2)
• Other participants highlighted the need for the
  wider community (for example shop workers) to be
  aware of AAC and how to communicate with people
  who use it.

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Observations potential Risks

• Adults living in residential care appear to have
  less communication support and less access to
  high tech equipment than those living with their
  family or independently in the community.
• There appears to be disparity between the high
  standard of communication support enjoyed by
  children in specialist schools and the lack of
  such support at adult residential services

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Rural Isolation

• AAC users living in rural areas appear to be at
  risk of feeling isolated.
• Sarah is the only person in her day centre or
  area with AAC needs and she is very isolated.
  Although meeting other AAC users is one of the
  highest importance this isnt happening for Sarah
  as she is the only person in the area using AAC
  and therefore is very isolated and shunned by
  others at her learning disability day centre.
  Interview 12
• We live on a remote island with few AAC users.
  Opportunities to attend conferences and parent
  groups provided essential networking and learning
  and friendship (survey)

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Summary

• Value of getting the views of people with
  communication disabilities
• Importance of really listening to the views of
  AAC service users
• Needs to be on-going
• Could it be woven into AAC services so that these
  are evaluated from a user perspective?
• How to do this genuinely?
• Use these indicators as a measure of service
  quality
• Link with the Scottish AAC Education framework