Communication Matters AAC Users Focus Group

Richard_Scope
Richard_Scope Posts: 3,716 Cerebral Palsy Network
edited October 2022 in Cerebral Palsy Network

The group acts as a focus group for Communication Matters (CM) and is a vehicle to hear the views of Alternative and Augmented Communication (AAC) users on CM and its activities and actions. This group is also undertaking some work on behalf of CM led by AAC users, for example, fundraising activities. This group is more suited for older AAC users.

The group meets online over Zoom every other month.

 Laith, Saff and Andrea have set meeting dates for 2023 

They thought that getting into a pattern would be helpful and so they have set them on the last Wednesday of every other month from 4-5 pm 
Please see the dates below:
  • Weds 26th Jan 4 pm
  • Weds 30th March 4 pm
  • Thu 26th May 4 pm
  • Tue 26th July 4 pm
  • Sun 11th Sept (time TBC, meet at the CM conference)
  • Tue 18th Oct 4 pm

Please contact andrea.sharples@communicationmatters.org.uk if you have any questions or would like to join the next meeting of the AAC User Focus Group.

Comments

  • forgoodnesssake
    forgoodnesssake Online Community Member Posts: 509 Empowering
    My only comments would be that AAC should be initially spelled out in full "Alternative & Augmentative Communication" and also that this is not just for people with CP; it is anyone who has little or no functional natural speech and so uses some form of AAC (however important to note that the term AAC does not cover BSL)
  • Richard_Scope
    Richard_Scope Posts: 3,716 Cerebral Palsy Network
    I got this from Communication Matters. I will make the edit.
  • forgoodnesssake
    forgoodnesssake Online Community Member Posts: 509 Empowering
    Thanks @Richard_Scope ...I realised you were just sharing what they'd sent!  It is a very good initiative though.  I think my son is involved.
  • L_Volunteer
    L_Volunteer Community Volunteer Adviser, Scope Member Posts: 7,922 Championing
    Thanks @Richard_Scope for sharing this with us. What important work, indeed! 

    @forgoodnesssake Thank you for sharing your feedback with us. Hopefully, this will be used to make improvements in the future. 

    If anyone else has any feedback, questions, comments or concerns they would like to raise please don't hesitate!  :)
  • Elysium
    Elysium Scope Member Posts: 94 Empowering
    I need an AAC device and to learn BSL for times when I’m unable to speak due to Autistic meltdown but no idea which devices would suit me, where/how to learn BSL and cannot afford to buy an AAC device or pay for a BSL course! Advice welcome on this please!
  • L_Volunteer
    L_Volunteer Community Volunteer Adviser, Scope Member Posts: 7,922 Championing
    It sounds like this is really difficult for you at the moment @Elysium. However, you have been really brave and strong in reaching out to us. 

    When you are having a meltdown, do you have any particular methods of communication that you find more accessible? This is an important consideration in the device that would suit you. 

    In terms of learning BSL, there are lots of videos on YouTube that you might find helpful. There is also British Sign.

    Similarly, in terms of not being able to buy an AAC device, this is understandable especially as they can be costly. However, there are also some free or heavily reduced apps that serve a similar purpose. 

    What type of device do you use - is it Apple or Android? Some apps that are AAC tools include: 

    • Grid Player 
    • Visuals2Go
    • Leeloo AAC - Autism Speech App 
    However, this is likely to depend on the type of device you have. If you would like to let us know, we will help you to navigate this. 

    I hope this at least semi-helps. Please don't hesitate to let us know if we can do anything else to support you. We are all here for you and listening to you  :)
  • Elysium
    Elysium Scope Member Posts: 94 Empowering
    L_Volunteer said:
    It sounds like this is really difficult for you at the moment @Elysium. However, you have been really brave and strong in reaching out to us. 

    When you are having a meltdown, do you have any particular methods of communication that you find more accessible? This is an important consideration in the device that would suit you. 

    In terms of learning BSL, there are lots of videos on YouTube that you might find helpful. There is also British Sign.

    Similarly, in terms of not being able to buy an AAC device, this is understandable especially as they can be costly. However, there are also some free or heavily reduced apps that serve a similar purpose. 

    What type of device do you use - is it Apple or Android? Some apps that are AAC tools include: 

    • Grid Player 
    • Visuals2Go
    • Leeloo AAC - Autism Speech App 
    However, this is likely to depend on the type of device you have. If you would like to let us know, we will help you to navigate this. 

    I hope this at least semi-helps. Please don't hesitate to let us know if we can do anything else to support you. We are all here for you and listening to you  :)
    Hi L you are so helpful I appreciate you so much thank you <3 I have an iPhone so will research the apps you mentioned. I have different types of meltdown but the biggest challenge is remembering to use an AAC device or app in the moment as my mind literally is gone. I would need to try to ‘build it in’ as a reflex/reaction somehow. I really need either:
    1) to learn BSL - but with a teacher as I can’t learn from watching only doing (kinaesthetic learner) or
    2) something that I just type words in and it speaks for me that isn’t my phone as getting that out in a meltdown will be difficult as the phone interaction is v tricky for me and unlocking the phone, then the app is too much. A very basic ‘speak & spell’ type gadget would be great but SMALL/pocket size or something I could wear around my neck - a6 size or smaller would be great. I don’t care about the robotic sounding voice AT ALL. If it could have preprogrammed phrases like ‘I am autistic’ ‘please help’ ‘I cannot speak’ etc even better xx
  • L_Volunteer
    L_Volunteer Community Volunteer Adviser, Scope Member Posts: 7,922 Championing
    Hi @Elysium. Thank you for your appreciation. I really value your appreciation. However, I just responded from one autistic person to another. I see you. 

    Have you heard of Brain in Hand? It can prompt you on what you usually find helpful when you are struggling. I recognise that often when we struggle our strategies go out the window.

    Alternatively, do you have a support network who you could ask to prompt you to use an AAC device or app when you are in a meltdown?

    As a kinaesthetic learner, would copying the video help you as it would be you practically doing it, or would you need feedback to go along with that?

    I am just trying to think of the most useful cost-effective approaches! You can get AAC sheets would that help at all, as they don't rely on being able to use any tech?

    In terms of the tool you have described, several resources come to mind which include:

    I hope these resources are at least semi-helpful. Please don't hesitate to let us know if we can do anything else to support you.

    We are all here for you to support you and listen to you. You don't have to face this, or anything else, alone if you don't want to.

    Take care for now and we will look forward to, hopefully, hearing from you again soon  :)

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