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 eatingdrinking. 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.

Preparing for high school

“Rachel was very clear about the goal of her therapy – she wanted to be able to dance.”

Rachel’s mum Sharon shares their family journey, and the preparations they are making to get ready for high school.

“Rachel and her twin sister Louise were born 12 weeks early. We were told Rachel had cerebral palsy when she was eight months old. It affects how she walks, and means Rachel uses a frame or chair to get around.

When she was two her physiotherapist, a lady so amazing we call her ‘Saint Donna’, referred us to Bobath where she’s been going ever since for regular therapy.

Rachel is going to high school soon and very much looking forward to it. She wants to go to the local mainstream school with her friends, so we did a placement request. She’s a bright kid and having weighed up the options we believe it’s the best place for her. Adaptions will need to be made as it’s a bigger school and there will be a lot more moving around. But she’s becoming very confident and independent and now wants to go off to shops in the shopping centre on her power scooter without us.

She has support workers at primary and uses a laptop and ipad. But her Occupational Therapist is looking at what she might need at high school as there will be more background noise and that might not work if she is speaking into a computer.

Rachel’s goal was to be able to stand up and dance. Therapy helped her work on her balance and standing against the wall to support herself. She’s a lot more flexible than I would have known.”

Kirsty is 34. As a busy hospital doctor, she’s on her feet constantly and describes what went through her mind before having foot surgery.

“I was born 10 weeks premature and I have Spastic Diaplegia. I would say it’s quite mild. It’s walking that affects me, balance, co-ordination, that sort of thing. My arms were affected when I was growing up, but my arms are fine now.

I was in the Scottish Disabled swimming squad as a teenager. It was really good for me, it was good for my fitness, my confidence and good to meet other people with a disability. When I was thinking about doing Medicine my Guidance teacher told me to recognise my limitations, but I met a girl through swimming with Spina Bifida who walked on crutches and was doing Medicine. It made me think I’ll have a go.

In medicine, you get to work overseas if you want. I did a placement in South Africa and America. That was a thing lots of people thought was a silly idea and it was fine. I did it and enjoyed it and I was fine.

Foot surgery

I walked on my tiptoes until I was 21. My joints were subluxing and I was struggling. I had foot surgery on my right foot and I had my foot realigned and my Achilles Tendon released. At the time, there wasn’t a case study on it. I felt it was worth a go because my feet were the very things that were going to take me off my feet.

When I was 29 I got my left foot fixed. The trouble was it wasn’t a standard operation. It wasn’t a case of, if this goes wrong we’ll do this. It worked out fine for me and my feet are now in a much better position. I now walk heel to toe, there’s less pressure.

First time around when I was younger I underestimated the recovery time. I was in a wheelchair for six weeks, got back on my crutches and walked slowly with a moon boot and 11 weeks after surgery I was off to South Africa and did physio myself.

After the surgery when I was 29 the surgeon told me I had to take three months off work. I think because I was a lot older it took me a lot longer to recovery.

I’m a care of the elderly doctor so I see people coming in their 70s, 80s and 90s falling over so I do worry about what it will be like when I’m older. I’m on my feet with my job and I walk a lot and stay really active so I think that’s probably helped my strength.

Everyone’s different and within reason, I think everyone has to try and keep active. I’ve been a bit lazy and I think like most people in my 20s I wasn’t doing as much exercise so now I’m working towards an open water swim and I try to do other stuff for balance.

I was lucky in my 20s as my job was active I was running around a hospital and I could be on my feet for 12 hours a day. So then when I wasn’t doing that as much I felt that I probably needed to up my own exercise and since doing that I feel a bit stronger and my balance is better.

I fall over, I don’t not do something. If I’m at a wedding and I do a ceilidh dance and I get knocked over my friends just think Kirsty’s fallen over again. I kind of just do stuff. I’m not unsafe, but I have fun. Sometimes you do things and think I can’t do this, but most of the time things can be adapted and people can be very supportive. I’ve got an amazing group of friends.

My mum would say sometimes it’s easier and sometimes it’s harder being only mildly affected by cerebral palsy. I’m trying to keep up with all my peers and sometimes that’s harder because none of them have anything wrong with them.

Deciding whether or not to have surgery

I didn’t think about it too much. I thought my feet are really sore I can’t walk on them as well now. I felt that I had to go for it.

My advice to anyone weighing up the decision to have surgery would be:

• • Get as much information as you can in a way you understand it.
  • Ask what could go wrong in the worst case scenario.
  • Find out what is the likelihood of that happening? For me it was difficult because there weren’t case studies behind my surgery. They weren’t sure if they put my foot in a better position they weren’t sure whether it would go back.
  • Ask what happens if you don’t do the surgery, what will you lose?

I left it until I felt like I really need it, like the pain and positioning of my feet were such that it was impacting on what I could do. I was thinking about my future too. My whole walking is better now. Although at the time my level of expectation of what surgery could do for me way unrealistic. I think I thought I’d be walking in stilettoes and no would notice I walked differently. I was more realistic when I was older.

Relationships

Where my confidence struggles the most is in meeting people. Relationships are so much a confidence thing. I think it is harder to meet people. Do I put out the vibes of don’t talk to me because I walk a bit funny?

When you’re in your 20s you already feel a little bit less attractive than everyone else because you walk a bit funny and then there may be other functional issues as well. Who do you talk to about that? So you don’t talk to anyone. I spoke to my mum eventually and a few of my friends.

Very little to do with relationships and sexual health with cerebral palsy is discussed. People need to know that if they are having problems there are things that can be done.

Regular therapy can help you avoid the need for surgery

“I was blessed with incredible parents. They found creative ways to help me become independent.”

I am 53 years old and was born with cerebral palsy due to a lack of oxygen during birth. The damage caused to my brain is on the right-hand side, which means that I have paralysis and restricted movement on my left side, it is known as left hemiplegia. I regard myself as being extremely lucky in that I can walk, talk, communicate and understand the environment I’m in.

When I was born there was very limited information and support in relation to CP, I can only imagine how upsetting it must have been for my parents. They were very much alone and didn’t know how active or mobile I would be. I attended Yorkhill hospital during my childhood. The visits and treatment offered clinical diagnosis but no practical living skills, and when I no longer qualified to attend Yorkhill the help ended.

Supportive parents

I have been blessed with the most incredible parents. They have done an outstanding job in supporting me to lead a full and fun life. From an early age they were creative and innovative in helping me to become as independent as possible. Even before exercise bicycles were created my dad had jammed the wheels on my bike to enable me to use my bike in the house to build strength in my leg. He adapted the lyrics in the Searchers song ‘Don’t throw your love away’ to ‘Don’t throw your leg away’ to encourage me to walk in a way that stopped me from tripping. My parents’ influence has been paramount to my current lifestyle.

School years

I attended a village primary school; I very much enjoyed my time there and was supported by friends especially when I required extra help after surgeries.

When I moved on to high school life wasn’t so easy. The building was large and I found it quite difficult to get around. The pupils weren’t all as friendly either and I experienced a lot of name calling, but my village friends stood by me. When it came to considering what to do after leaving school I was advised by teachers and guidance staff that working part-time in a shop would be a good option. I felt disappointed as I thought I had more to offer.

Choosing a career

I had a lucky break, my parents had a small family business and their accountant came to visit. I was interested in what she was doing and also liked her fancy sports car, her high heels and her pinstriped suit and thought I might like all of that too. I told my parents of my intention and they supported me all the way, arranging for extra tuition, and I left school with five Highers. Just before leaving school I learned to drive, again with my dad’s help and creativity in adapting the car. This is by far the most useful exam I have passed as it gave me my independence.

Life after school

Leaving school was daunting as I was unsure how I would get around in an unfamiliar environment without the support of my friends. Attending university full-time concerned me, I was fortunate to be offered a trainee accountants post in Milngavie. One of my colleagues helped me learn to swim and another introduced me to Glasgow Riding for the Disabled Association where I have been riding for the last 35 years. I worked there for seven years and became part qualified before moving on to work for the NHS.

Starting a family

During this time I met and married my husband Tom. He has also been an amazing support to me, helps me when he can, but also tries to put things in place that allow me to do what I can for myself.

The year after we were married I became pregnant; we were absolutely delighted as we had been unsure if my condition and the drugs I had taken would have an impact on my ability to conceive.

Jenna isn’t just my daughter, she is my friend too, her encouragement, support and love are indescribable and I am very proud to be her mum. When Jenna was young I struggled to cope with lifting and caring for a new baby, I will never forget the help and support I got from family and friends especially my mum at this time. During my maternity leave I decided to complete my accountancy exams and became a fully qualified chartered certified accountant. This was a major achievement for me and although I have the pinstriped suits, the sports car and high heels haven’t worked out. Sports cars are over rated anyway in our West of Scotland climate!

I now work for Audit Scotland. I have worked there for 20 years and I am currently the Director of Audit Quality and Appointments.

Therapy vs. surgery

I was introduced to Cerebral Palsy Scotland at the age of 44. I became aware of the adult services offered by Cerebral Palsy Scotland and went for an assessment – excited but apprehensive. I hadn’t had any specialist input on cerebral palsy until that day. I was struggling at the time with stiff and painful joints and muscle contractions in my left arm, and thought the only way forward was painful surgery with a long recovery period.

During the assessment I learned lots about my cerebral palsy and why things didn’t work the way they should.

I discussed my goals with Kirsteen the therapist and put my posture top of the list. Learning that my left leg is longer than my right leg was news to me too – I had been wearing the heel block in the wrong shoe! I remember the day clearly as it was the day that my lonely journey with cerebral palsy ended; I had a lifeline and support network in helping me to manage my condition.

During my first block of therapy Kirsteen developed a programme that improved my muscle tone and tightness, which has significantly reduced the need for surgical intervention. A fantastic result as I would much rather avoid surgery.

My next block of therapy was based more on practical life skills. Coping with stairs and busy places especially on uneven surfaces is particularly challenging for me. Kirsteen has given me solutions so I can feel more in control facing these situations. She also arranged for me to see an orthotist to provide a splint for my elbow as the contractions and painful spasms could result in loss of use over an extended period. The splint provided was less than suitable, it was heavy, cumbersome and required assistance from two people to fit it.

When I showed it to Kirsteen her frustration was clear. She asked Sandra the occupational therapist to get her electric frying pan out. I was a bit worried as I had no idea what she was going to do with it! Sandra melted a piece of plastic, which she moulded into the shape of my elbow and created a splint that is both practical and comfortable. It will also help to avoid the need for future surgery.

Therapy packages are creative, fulfilling, fun and very satisfying. The focus is on ability and not disability; it’s what you can do that matters.

In 2015 I joined the Board of Cerebral Palsy Scotland. It was a privelege to be involved in decision making and represent CP service users. Seeing Bobath Scotland transition to Cerebral Palsy Scotland was a real highlight for me as it created better awareness of the service’s available. In 2022 I retired from the Board but still have a close connection with the charity. During this time I was introduced to Dr Kirsty Colquhoun who also has CP and became a very active Board member. It’s great to have a friend who experiences similar challenges. We are both passionate about seeking solutions to assist people with CP and removing barriers and negative expectations.

My advice to anyone with cerebral palsy is to quote my favourite proverb: “Don’t be pushed by your problems, be led by your dreams.”

“I never thought about ageing I just carried on… physiotherapy even at my age has made a huge difference to how I can move.”

Jackie Maciera is 65, has worked for 32 years, been a local councillor and now works with the NHS. Here he reflects on the difference recent physiotherapy has made to his mobility.

“I was born with CP and I’m now 65. It took until I was I was five to be diagnosed. I was a floppy toddler. I couldn’t sit up. I went through a lot of pioneering operations. At 14 years old I started to get up and walk with sticks and I did that for a few years. I went to Kelburn School which meant I was able to have therapy every day. Once I left school I didn’t get any physiotherapy after that. I didn’t think about it, I just carried on with life.

If I’d had physio throughout my life it would have kept the tone of my muscles supple and kept everything ticking over, but it never happened. It was only last year I discovered that Cerebral Palsy Scotland were doing an adult therapy programme. It’s made a difference even at my age to how I can move. I’ll never be able to walk any great distances because I’m mainly in a wheelchair, but it’s helping, it’s keeping me slacker.

The benefits of therapy

When I think about how stiff I was physio has made a huge difference to how much more relaxed I am. I couldn’t lift my leg to put my shoe on. After the therapy it was much easier to bring my leg up. I’ve got a sock aid that puts socks on, and I could put my shoe on. It’s a case of for a short while I don’t feel so stiff and I don’t get as many spasms. That was the first physio I’d had since I’d left school.

Back then we never got any information at all, so we just accepted what was there. But now you shouldn’t be accepting it. Seek out what help you can get. When you move into adulthood that’s the main part of your life, you want to go to work, have a family you do all these things. Seek out opportunities, organisations you could work with.

I’ve worked all my life, 32 years and then I became a local Councillor and moved into the NHS. It’s been great fun. I’ve done a lot. Employment is still a big issue and support for employment is still a big issue.

I never thought about ageing, I just carried on. I was active and into sports in a big way, swimming basketball. I think if I’d had more physio in life I would have been walking a bit more but hindsight is a wonderful thing. I don’t look back. The pioneering surgery and work they did then probably led to what they have now.

It’s difficult to find adult services and sometimes it’s about getting the right social worker. It has to be a partnership and listening both ways.

Cerebral palsy is so varied and the level of disability you have is so varied, but my advice to anyone turning 18 now is to not fall into the trap I did. Don’t just because you’re young you can climb the world, think about what help you had when you were in children’s services and think about which services you might need to continue being at your best. Seek out help, find it and be prepared to fight for it.

To mums and dads I’d say I know you love your child so much but don’t wrap them up in cotton wool. They’ll outlast you and you have to prepare them for independence all the time. Let them do sport, let them do things. My Dad was tough on me; you have to be prepared for life.

Would I change anything about your life? I’d get physio every day, but other than that I wouldn’t change a thing. I’ve done more in my life than a lot of able bodied people. I’ve done things, seen things most people never do.