How we can help students with cerebral palsy to realise their potential
Cerebral palsy (CP) is a most varied condition. It can present as a severe and complex disability with the person being unable to move or speak. Alternatively, the individual might be able to communicate as well as a non-disabled peer but have slight motor problems. There are many shades in between.
Students with CP may have average or above average cognitive ability. Some will have mild, severe or profound learning difficulties. There are a significant number of students with CP who have communication difficulties as well as movement difficulties. Students in this group can be very challenging to accurately assess in terms of cognition. There is a danger that assessors might underestimate ability, meaning that the student does not receive education at a level that meets her needs. While overestimating an individual’s ability might be confusing for the student, imagine how much more difficult her situation is if her cognitive ability is underestimated. The notion of the “least dangerous assumption” has been adopted by a number of practitioners and organisations involved in the teaching and support of this group. The least dangerous assumption examines two scenarios:
Scenario 1: Kim is a student whom we assume has no understanding. We have low expectations and provide her with a curriculum we would deliver to a student who has profound and complex needs. Ten years later we find out that Kim has normal cognition. What have we lost?
Scenario 2: Kim is a student whom we do not understand. We don’t know if she has any understanding. We take a risk and assume that she understands and teach her accordingly. Ten years later we find out that Kim has profound and complex needs. What have we lost?
Assessment and equipment
A useful assessment tool is dynamic assessment. It is often difficult for students with CP to demonstrate their ability with standardised tests, unless they only have a mild form of the condition. Dynamic assessment enables the assessor to observe the student informally, measure what she achieves when she receives appropriate input, and change the approach being used if it is not achieving the goal of supporting the student to learn. In dynamic assessment, the assessor can intervene during the assessment with a view to providing the tools to improve the student’s current level of learning. You may think that this is little more than common sense, and what teachers do every day in the classroom, and you would be right. However, students with disabilities can often be misunderstood and it is the extra mile their teachers travel to ensure that they have examined all the avenues that might support learning that can make all the difference.
Recent developments in technology are offering new opportunities and changing the way we work with students who have movement and communication difficulties. The use of assistive technology (AT) and augmentative and alternative communication (AAC) has transformed the lives of many students who were previously unable to express their thoughts. However, technology is only as supportive as the person presenting it to the student is able to make it. Tablet computers have opened up some great opportunities in the classroom, but it is vexing to read articles in the popular press claiming that individuals have learnt to communicate for the first time in years with the help of a free app. If only life was so simple.
In reality, the process starts with a comprehensive assessment, performed in conjunction with a local centre or AT and AAC provider who understands the range of technology available. Both the hardware (the machines themselves) and the software (the apps and programmes that go on them) have to be thoroughly analysed to understand the different ways a student might access them. It is then important for the student to trial hardware and software to be sure that the choice made is right for her. Even after this, there will be training and on-going support issues, because technology is not yet reliable enough to be trusted on its own. What’s more, nothing lasts forever and technology moves on all the time, so ongoing re-assessment is essential. It is rare that a tablet computer can provide a total solution to a student’s communication and learning needs, but they can be useful if used to complement other approaches.
Going beyond tablet computers is a range of equipment, including dedicated devices that have been built for the purpose of enabling communication, and computer-based solutions that allow full access to anything on a normal computer, in addition to specialist software that enables communication and learning.
More important than the device, though, is how the student will access it. Access can include:
- direct access by pointing. This might be pointing with a finger, a fist, the eyes or a head pointer. For people using direct access, the size of the screen and the way in which options are arranged on it can make a huge difference to how successful it is
- indirect access such as switch use. A person who is accessing a device with a switch needs software that accepts switch use and an ability to either time their movements or the patience to use one switch to move between choices and a second one to select their choice. There are numerous ways in which switch use can be approached and it is best to consult an AAC assessor to establish the best access route for the individual
- speech recognition software that allows the student to dictate to their device which then translates this to the written word. This can be particularly useful for students with relatively clear speech but with difficulties with movement.
- Other features that can optimise access to learning include, word prediction, spell checking, electronic highlighting, specialist software that is grid based so that the student can target the areas on the screen effectively, and non-specialist software that is adapted for grid-based access.
For students who have difficulty with communication and who rely on technology to communicate and demonstrate their learning, the acquisition of literacy is paramount. Not everyone will be able to learn to spell fluently, but even knowing initial letter sounds and then using that knowledge to access word prediction can be liberating. For students who really aren’t able to learn literacy conventionally there are creative options available using symbol and picture based support. However, I would urge teachers never to give up on providing literacy learning opportunities to students. Sometimes, a change of approach can make all the difference.
It is generally recognised that cognitive ability and learning potential are not commensurate with mobility or verbal skills. Some of the most cognitively able students with CP are to be found in the population of students with athetoid CP. However, their skills may be masked by the often huge difficulties they face with controlling movement and speech. Recent developments with eye gaze technology have made a big difference to some of these students. Eye gaze technology enables the student to gaze at the part of the screen that they wish to activate. A camera detects where the student is looking and effectively turns her gaze into a mouse curser.
An increasing number of students with CP are now accessing exams, such as GCSE’s, and looking forward to futures which include employment prospects. Despite this, many schools still complain that their students with CP are not treated fairly by exam boards. I believe, though, that the real situation is more complex. There are clear guidelines set out by The Joint Council for Qualifications (JCQ) regarding access arrangements for disabled candidates. Within these guidelines, the most important consideration is that the arrangements made for the student to access the exam should reflect the student’s normal way of working. If exam centres ring their exam board and ask broad questions about how an individual student can access an exam, they are highly unlikely to receive a satisfactory answer. The individual officer at the exam board will not know the student or her normal way of working. It is up to the exam centre to work with those who know the student well to ensure that a portfolio of evidence of the student’s needs is built up over time. It is then the responsibility of the exam centre to inform the exam boards and explain in detail how and why the student requires the particular access arrangements being asked for. The JCQ guidelines make it clear that access arrangements are decided on a case-by-case basis, which means that the clarity of the exam centre’s submission will be crucial to the outcome.
In preparation for forthcoming GCSE’s, some of the students I am working with are taking tests that have been designed for them to access their work independently using grid based software. Instead of ringing or writing an answer, the student who is only able to point and not able to speak can point to the questions, listen to them again, choose the correct answer and, if literate, write an answer using an on-screen keyboard. The wording of the tests is not changed in any way, so the student is accessing them in the same way as her non-disabled peers.
Features such as “listen again” can be particularly useful as students are often reluctant to ask live readers to repeat a question or other information as many times as needed.
Such differentiation can be very effective for some young people with CP, enabling previously struggling learners to keep up and access lessons alongside their non-disabled peers. There is one problem with tailor-made grids like these, though: they take a long time to prepare. By and large, tailored differentiation of this type requires the same amount of time to put together as the student will spend completing the work – an hour of preparation for every hour the student spends in the work situation.
It is difficult to differentiate on mass because every student’s needs are different. The key to this becoming a more cost-effective way to provide education is to train staff to understand differentiation demands and techniques, so that teachers can take this into account when they plan lessons. There is still a way to go before this way of working becomes standard practice in education.
Reasons for hope
The options available to the student with CP are continuing to broaden out. A good friend of mine recently graduated with an MA. When she was young, her school had very low expectations of her potential and her mother played a large part in her education outside of school. But that was twenty years ago and the education world has moved on. Another friend of mine, who has sadly now passed away, was assumed to have very low intelligence and no capacity to communicate until he was 39 years old. Once he had access to the right support and an electronic communication aid, he was able to move into his own home and set up his own business.
My own son, who is 25 years old, was more fortunate. His intelligence was always assumed; he enjoyed a mainstream education which was very much tailored to meet his needs. This meant that he had a restricted timetable, because his CP is quite severe and it takes him a long time to complete work. He is now living in his own flat with support from a number of personal assistants. His disability is too severe for him to be able to contemplate work but, thanks to the education he received, he is able to make choices, have a social life and enjoy cultural activities in his local area.
A former SEN teacher, Marion Stanton is now Lead Trainer and Assessor for Communication and Learning Enterprises Limited. She is the author of the Cerebral Palsy Handbook and the mother of an adult son with cerebral palsy: