Cerebral Palsy

Is there enough communication support?

In this blog, Jill Clark looks at whether people are getting enough support with their communication devices.

AAC stands for Augmentative and Alternative Communication, which really means different ways of communicating and includes communication devices, communication books and many more. One in four people with cerebral palsy living in Scotland uses AAC.

In Scotland on 19 March 2018 a law started. This law means that anyone who uses AAC should be provided with equipment. A big part of the law is also supporting people to use their equipment.

Support is very important to an AAC user because you can’t just give someone a piece of equipment and expect them to use it without any support. AAC support starts with the first assessment and carries on once someone has got a piece of equipment too. So, in this blog, I am going to highlight my experience of AAC support and also other people’s experience of AAC support too.

I have been a AAC user since I was 4 or 5, when I was at school I can honestly say I had a really good group of people supporting me with my communication devices. This group included my family, speech therapists and school teachers. What I mean by getting support is getting a device, helping me to choose the right device for me, and making sure I had all of the vocabulary which I needed at that time for my work. Also, when I was at primary school I used to go to a group at the Scottish Centre of Technology for the Communication Impaired (SCTCI), which was very supportive too in terms of getting help with my talkers and meeting other AAC users too. When I got fancier devices we got training which helped a lot. Overall I had great AAC support when I was younger and at school.

Nowadays as I am an adult I would say that I get less support then I got when I was at school, because I don’t really need it as much now. But, if I do need any help with my communication device I know where or who to contact, for example when my device breaks down, or when I need to help with something like setting my device to work with the television, or if I need a new device.

I was also recently part of Bobath’s AAC adults’ group. It was good if I needed any support and for getting together with other AAC users too. I would like to see some more groups happening to support AAC users.

After I left school it has always been a worry if it will be a fight getting a new communication device, but since leaving school I have had two new devices which I had no problem getting. I always get support when I need it and really hope that it will stay that way in the future.

I have contacted other AAC users and a parent of a child who uses AAC to get their experience of what AAC support they got and here is what I found out:

Gavin Drysdale

Gavin Drysdale is 18 and has cerebral palsy, a condition which affects his speech, balance & co-ordination. Gavin uses a communication device called NovaChat8 but currently he is looking at a new device. When Gavin is unable to use his device he uses sign language to communicate.

Gavin got his very first device at the age of four, before he started primary school. Gavin adds: “my communication device has evolved. One of the first devices I had was very like a typewriter so you could only spell out words. Now, using my communication device I can save messages and customise the layout. It’s amazing what communication devices can do nowadays”

Gavin has always had fantastic input from speech therapists and staff in school with his communication device and now he has left school that input is still there for getting a new device and the training. And also his family is very supportive of him with his AAC life too.

Gavin has no worries at the moment about his AAC support as he feels that he receives enough support.

Bernie Hunter

Bernie Hunter is 24 and has cerebral palsy which affects her mobility and speech. Bernie has been an AAC user since the age of five and currently uses a tablet that has communication software in it and this is her voice.

When Bernie was due to start primary school her family found it quite hard to get AAC equipment for Bernie. Bernie adds: “I was due to start primary school so my family had a couple of meetings and the outcome was that the school couldn't promise that I would have the device in time for starting primary due to funding. At the time, my auntie was the named person to speak on my behalf. She got in touch with the head of education and I got the device very quickly after that”

When Bernie was still at school she got great input from the school’s speech therapist and staff for her device. She always felt that she could go to them whenever she needed support.

But since Bernie left school she hasn’t had any input from a speech therapist and she says: “In my opinion you just get given your device then that's it, no advice or support. The company do offer you a training session but it is in England. Recently my own device has had issues and it required a repair, the technical support has been good and I got a loan of a device until I got my own back.” Also it is a worry for Bernie about who will fund any future devices.

Alec Wallace and Anna Hunter

Anna Hunter is the mother of Alec Wallace who is six. Alec has quadriplegic cerebral palsy and uses a communication device to talk. Alec mainly uses a Tobii i-12 eye gaze device to communicate.

Alec has been a AAC user since age of two, starting off by using communication symbols, and then moving to a communication book. He was introduced to an eye gaze device at age two or three and was provided with his own eye gaze device at age four.

Anna explains when Alec was younger he wasn’t given any input for his communication - just for physiotherapy and eating\drinking. Anna added “We had limited input on communication, until we specifically asked for more input when Alec was 2. From that point, Alec started to see a Speech and Language Therapist who focussed on communication. He was quite quickly provided with a communication book. We were then referred to SCTCI. They were the first people to give Alec access to an eye gaze device. When he showed an understanding and ability with the device, they then recommended to the local education department that they should provide funding so that Alec could have his own device.”

Since Alec got his device Anna and the family feel that they have very good support from speech therapists and SCTCI.

Looking at the future, Anna added “For me, I think the big problem around AAC support is access to specialists – people who really understand the devices, how to get the most out of them, and also know how to make them work well within the school context of learning. Understandably, not all Speech and Language therapists have that specialist knowledge. We need to get to a place where users, parents and schools can gain quick, ongoing access to eye gaze or AAC specialists, and for that not to be a big fight or a big deal.”

Marion Burns

Marion Burns is age 35 and lives with cerebral palsy. Marion uses a communication device called Modi, her best device yet.

When Marion was eight she got her first device. Although the speech therapist in the school wasn’t supportive she had a great input from the SCTCI. But, due to the lack of support from her school Marion lost interest in her device.

As an adult, Marion has also had support issues with her devices. She explains, “I was waiting for a talker for a good nine months and that was really annoying for me. And when it did come I needed to wait for a key guard. During this time I had a talker which wasn’t working right meaning I was getting fed up.”

But once Marion got her device she explains that “SCTCI was great setting it up for me and the Mobi technician came to give us a quick course on how to do things, so my support workers also know how to do it.”

Marion feels that she doesn’t get enough support with her AAC equipment, adding, “Last year I needed a new key guard. I tried to get help to order it but I found no one were very willing to help and I just ended up doing it myself, which I think, “That’s terrible””.

Looking at the future Marion is worried that, when she needs a new device, that there may not be someone available to help her get a device.

From my own experiences and Gavin’s, it shows that yes, there are people who are getting good AAC support. But from Marion and Bernie’s experiences there are still people fighting for help with their communication needs and sometimes left with no AAC support. That’s not on. Communication is the key to everything so everyone should be able to communicate, but without any support you can’t, so that is why everyone who needs a piece of AAC equipment should get the right support.

Looking to the future I really hope that with this new law in place in Scotland that people who require AAC equipment will get it and the support without any problem at all. Everyone has got the right to speak.