As the Headteacher of a school for children and young people with profound and multiple learning difficulties and complex health needs, I oversee a staff of teachers, therapists and care workers who work with some of the most profoundly disabled children in the UK. Working with such a complex population brings its own particular challenges, whether this is in a residential special school or a unit within a mainstream primary or secondary school. Whatever the setting, though, employing a multidisciplinary approach to education is essential to ensure learners have full access to the curriculum.
What is PMLD?
As the PMLD Network says, people with profound and multiple learning difficulties (PMLD) are unique individuals, but they share common concerns: they have distinctive needs, face barriers to being included and need help to fight for their equal rights.
People with PMLD have more than one disability, have profound learning difficulties, have difficulties communicating, need high levels of support and may have additional sensory impairments and complex health needs. The combination of these complex needs means that all children and adults with PMLD require high levels of support in most aspects of their daily lives. As well as the need to meet these care requirements, for children and young people with PMLD there is the additional challenge of providing access to an education which is as full of opportunities, learning and fun as that of their mainstream counterparts.
Prevalence within the general population
According to a 2009 report by the Specialist Schools and Academies Trust, there are currently around 9,000 children in the UK with PMLD and this number is set to increase. Ongoing medical advances in the treatment of long-term conditions, premature babies and developments in acute care have ensured that increasing numbers of children with complex medical needs are surviving. Their needs may be the result of a degenerative condition such as Rett syndrome, a developmental disorder, extreme prematurity, or perhaps an acquired brain injury from an accident or illness. Whatever the nature of their complex needs, it is important that these children have access to the same opportunities and experiences as other children and young people their age.
At the most severe end of the spectrum, learners with PMLD cognitively function at the level of a six to twelve month old child and we estimate this group of learners numbers no more than around 1,000 in the UK. However, like any child or young person, they will continue to learn if given appropriate and accessible opportunities. There are very few schools in the UK which cater for children and young people with these very special needs and all face the challenge of how to provide a suitable and relevant education which records and celebrates achievements no matter how small.
As it stands, the National Curriculum does not offer a meaningful education for learners who are developmentally very young and teaching staff can struggle to break down its objectives to make them manageable for their pupils. Our learners are disapplied from the National Curriculum in its entirety and the school has instead developed the Profound Education Curriculum, an integrated 24-hour curriculum which embraces all aspects of development. It is designed for pupils who have PMLD compounded by a high degree of dependency, and who require highly specialised management for physical disabilities, sensory impairments and complex medical needs.
The curriculum develops and extends the P Scales 1 to 4 of the National Curriculum, providing a wide range of opportunities to identify and evidence the often very small, but important steps in achievement made by our learners. In addition, many of the activities and schemes of work associated with the curriculum address other elements of the National Curriculum, presented within developmentally appropriate, meaningful and relevant learning experiences.
As learners with PMLD are most likely to be developing skills which are linked to early years learning, our curriculum focuses on developing the learner’s understanding both of the world around them and of social interaction and relationships. The core curriculum embraces five key areas of sensori-motor development: sensory cognitive, communication, social, motor and life skills. These are delivered by a multidisciplinary team comprising teaching, care, therapy and medical staff.
As the achievements of learners with PMLD are often measured in very small steps, it is essential to focus on what learners can do and to provide attainable and realistic targets. Staff from all disciplines are involved in the design and delivery of the learners’ Individual Education Plans (IEPs) and see their particular input as part of a holistic approach to learner development. On admission, a baseline assessment of each learner’s needs is made, to provide the basis for their IEP aims, and linked objectives. Teaching is delivered either as a one-to-one session, as a group activity within the class or as a cross-class activity where learners’ abilities and interests can be matched. All planning and teaching must be constantly under assessment and review, so they can be adapted to the changing needs of the individual learner.
The role of therapy
Learners with PMLD benefit from physiotherapy, speech and language therapy, occupational therapy, music therapy and aromatherapy. Working alongside the class teacher and care staff, the therapy team can provide learners with assessment and treatment in individual and group sessions which facilitates, rather than disrupts, their access to education.
Therapy activities also give learners the opportunity to continue to work towards objectives in their IEPs, such as developing their communication skills in music therapy or working on their understanding of cause and effect through switching sessions in occupational therapy. Horse riding, pony and trap rides, Rebound Therapy on a trampoline and hydrotherapy have also been found to be particularly effective when working with our learners.
Meeting complex health needs
In addition to meeting a learner’s therapeutic needs, professionals working with children and young people with PMLD often have to manage their complex medical needs. Neurological, respiratory, gastrointestinal, musculoskeletal and immune system problems are not uncommon for our learners and present barriers to their access to education. The majority of learners at our school have medical needs which, even when carefully managed, will result in absences from the classroom due to illness, medical appointments, surgery or seizures. For these learners, regularly attending school can prove to be a challenge.
It is essential that all school staff are fully trained to support learners with their health needs, be it administering gastrostomy nutrition or managing a learner with a complex tracheostomy, and to recognise when a learner is in discomfort or unwell. Where it is possible to do so, providing on-site medical support is an excellent way to ensure the holistic management of each learner’s needs and maximise the time they spend in the classroom. For example, if a teacher notices a particular learner displaying behaviours associated with discomfort or pain, the doctor can visit the learner to assess their needs and, if appropriate, adjust pain medications on the spot with the aim of allowing the learner to remain in the classroom.
Case Study: Andrew
Andrew has Cornelia de Lange syndrome, a genetic condition that means he has PMLD and suffers with severe stomach pains. Unable to express himself in other ways, as he grew up Andrew showed discomfort by biting his hands. This became such a problem at his previous school that his hands were put in splints every day for long periods. This stopped the biting but restricted his movement and access to education and did not address his challenging behaviours.
When he moved to our school, the multidisciplinary team identified the need to introduce one-to-one support. Andrew now has a pupil development assistant (PDA) with him throughout the day, someone who knows him extremely well and can anticipate when he is about to suffer another attack of pain. They can distract him from the pain or just be there to comfort him.
The close contact with his PDAs has made Andrew happier, calmer and more confident, which means he now spends more time in the classroom. He is able to take advantage of the different activities on offer and leads an active life. He is supported by his physiotherapist to cycle to school twice a week on his tricycle and enjoys going horse riding.
With his new-found confidence, he has become more sociable and vocalises, smiles and reaches out to others. He is very tactile and enjoys turn-taking games, whether it is in his music therapy sessions, where he uses his voice to express himself, or working with his PDA to learn how to use switches to make things happen on a computer screen.
Andrew’s experiences show the benefits of a multidisciplinary approach to providing education for learners with PMLD which is tailored to meet their exceptional needs.
Further education and college
For young people with PMLD education should not, but often does, end at sixteen. Unfortunately, transitioning from school to further education can be a difficult process, as opportunities for further education in a school or college environment are limited and may not necessarily offer age-appropriate courses and leisure activities.
Alongside their peers in mainstream education, older learners with PMLD should have the opportunity to take part in accredited national award schemes which support their learning aims and afford recognition for their achievements. The Accreditation of Life and Living (ALL) Award Scheme, a qualification moderated by the national exam body OCR, and the Duke of Edinburgh’s award scheme can both be used to great success. The modules within these awards focus on the development of practical skills and community participation which provide an age-appropriate extension to a learner’s school curriculum. They are evidence-based and learners use their own work, photos, statements, videos and teachers’ observations to make a formal record of their achievements. The certificates the learners attain are exactly the same as those for their peers who will have been completing GCSEs, A-Levels and NVQs, and are a source of pride for families and carers.
With developments in medical science ensuring that more children and young people with PMLD and complex health needs are surviving, it is our responsibility as educators to enrich these young lives. With the right educational structure and support through a multidisciplinary approach to education, care and therapy, learners with very special needs can go on to live a life full of new experiences, opportunities, learning and, of course, fun.
Jan Cunningham is Headteacher of The School for Profound Education, part of national charity The Children’s Trust, Tadworth. The school publishes The Profound Education Curriculum for learners with PMLD, which is currently used in over 70 special schools in the UK and internationally:
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