Finding the right assistive solutions for those with CP should start with what they want to achieve
Cerebral palsy (CP) affects around one in 400 children in the UK. It alters muscle control and movement and often also presents with associated learning difficulties, communication impairments and reduced sensory integration. Every individual with CP will present differently and will therefore have a unique combination of challenges for independent living and accessing education.
Advances in technology and increased accessibility features are reducing these barriers to independence and education whilst increasing the opportunities to participate in many activities that were unavailable to those with disabilities a few years ago. However, the ever growing wealth of products on the market creates its own problems because it can be tempting to try every assistive device available in the hope that a solution will be found. This can result in the focus being on constant assessment while never giving the student time to develop the skills needed to actually use the equipment and achieve their goals. Consequently, that student’s future needs are unlikely to be adequately met.
Thus, working backwards by determining where the young person wants to be in the future during a technology access assessment is really important in deciding on a sustainable provision. Once these longer-term goals have been clarified, you can start to work forwards, providing the student with the equipment and opportunities to develop required skills, making adjustments as their needs change, but always with their future plans in mind.
Once the goals have been identified, their physical and learning difficulties can then be considered within that context. How does this work in practice? If we consider two young adults with different destinations in mind, we can explore how decisions are made that reflect their life plans.
Ellie is planning to live with a friend and carers in an adapted flat when she leaves college. She has a rare type of athetoid CP and finds it very difficult to coordinate any movements, needing physical support to stabilise these enough to use a voice output communication aid (VOCA). She enjoys studying and would like to be able to access some online learning courses in the future as well as staying in touch with her friends and family.
Ellie’s clear future plan supports her access assessment. She needs a setup that multiple carers will be able to learn easily in order to support her to use it. She also requires a system that is flexible and will give her the ability to browse the internet, create documents and send emails so she can access further education. While in the past an assessment may have centred around using a college’s IT systems to access education, the new approach focussed on setting her up with transferable equipment and skills that would also work in her future home environment.
Ellie’s set-up is therefore focussed around her communication aid. Due to technological developments this functions as her computer, so she doesn’t need access to a traditional classroom PC. The software she uses has been personalised so that she can use a webmail-based email account, search for information using a web browser and create documents or emails to record written work for her studies – a strategy she can use both at college and beyond.
In order to make the system further future proof, Ellie is planning on making short films of how she uses her communication aid and common problems with it so that she can be in charge of training her carers in the support she needs to use it. As her system is a specialist one and is not relying on a network, she will also be able to access technical support and training from the company who provided it, thereby giving her a sustainable solution for her life after college.
Lucy (pictured above) is a very proactive young lady who, following two years at a local mainstream college, is planning to go to university to study textiles and textiles design. She aims to pursue a career in interior design and live with the support of a personal assistant. She also has athetoid CP, with an associated scoliosis and limited fine motor skills. She also has little verbal communication and uses a combination of voice, gestures, body language and an alphabet board to aid her communication.
The initial focus for Lucy was on providing access to her academic courses, making sure she was able to participate in her studies and produce work that reflects and expresses her cognitive and creative abilities. As Lucy works in different rooms around the college this set-up aimed to give her access to the full sixth form college network in a way that would also transfer to other environments, such as home or a future university.
Following a multidisciplinary assessment, Lucy was provided with a special laptop tray fitted with a wireless joystick. An additional switch was fitted to her armrest to function as a left click mouse button. This was accessed using her elbow, so she could maintain her grip on the joystick, thereby increasing the speed of text production. Combining this set up with an on-screen keyboard enabled Lucy to use a variety of computers around the college while requiring minimal support to set it up. The simplicity of the approach meant that she would easily be able to transfer or replicate it in new learning or working environments.
However, Lucy’s aspirations were not just for academic achievement. She also wanted to be able to live and socialise independently. The final piece in the jigsaw for her current and future needs was to look at her communication, and here modern technologies were able to play a part. Lucy chose to use a smartphone and, when combined with the same wireless joystick she used for computer access, she had full access to all of the phone’s functions. This enabled her to send a text message independently for the first time, giving her much greater autonomy and privacy with her personal life. She is also able to use the phone during lessons to take notes independently, and with the use of a text-to-speech app, has an effective aid to support her communication.
Lucy’s ability to use mainstream devices, with a little additional hardware, gives her a future-proof solution to accessing technology independently. The use of a Bluetooth joystick gives her the ability to access the full range of resources required for her current studies as well as her future university and independent living plans.
These stories demonstrate the importance of working backwards from a student’s future aspirations. If only their current academic needs were taken into account, the solutions would have met their immediate educational needs but would have been unlikely to transfer to their future environments. The consequences of this could have had huge implications, by placing unnecessary obstacles toward their goals, potentially leading to technology abandonment and greater dependence on others.
In our experience, this approach works best when a multi-disciplinary assessment, centred around the student and their goals, is undertaken. Contributions from parents, teachers and therapists are required to provide a full picture of current abilities and challenges and to identify new skills and equipment that are needed in order to achieve the goals.
Helen Cronshaw is Head of Learning Technology and Hannah Golding is Highly Specialist Occupational Therapist at Treloar School and College: