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Janet Trebilcock looks at how a multi-disciplinary approach in a residential school is helping those with PMLD achieve their potential

Children and young people with profound and multiple disabilities (PMLD) are amongst the most vulnerable people in our society. The challenges they face, in terms of engaging with their environment, relating to those around them and fulfilling their potential, can be so severe that they sometimes seem almost insurmountable.

It is remarkable, though, just how much can be achieved by many of these children and young people if they are given the right support. For those of us who work in PMLD, excellence in practice is a must, and yet is often elusive. It is clear that children with PMLD should receive the very best care, education, nursing and therapy that we can provide. However, by definition, the needs of these children are complex, requiring the greatest perseverance from all involved to achieve a coordinated and sustained approach that will enable the fulfilment of potential and ensure the highest quality of life.

Achieving this kind of approach is a particular challenge in the community, where resources can be scarce and attention is often diverted to those with less complex disabilities. Residential schools, however, have specialist therapists, nurses and teachers on site, making communication between professionals and carers easier, and allowing for intensive input where necessary. Specialist centres for PMLD can also ensure the consistent implementation of an appropriately individualised curriculum, a 24-hour total communication environment and the embedding of vital approaches, such as intensive interaction and sensory integration.

To illustrate what such an approach might involve, I will outline the cases of three young people with PMLD who are residents at the specialist school for PMLD at which I work. It is often thought that those with PMLD make little progress throughout their education, and even if they do make progress, it is notoriously difficult to evidence. However, we are often delighted to record real steps forward that individuals have been able to make.

In each of the three cases below, progress in achievement and quality of life has required intensive input from many professionals. The absence of, or reductions in, any of these specialist approaches would have hindered or even prevented progress. The outcomes for these children speak for themselves.

Sarah’s story

Sarah has very complex health needs, arising from her quadriplegic cerebral palsy. These include, epilepsy, gastrostomy feeding (nil-by-mouth), being prone to serious chest infections, having dislocated hips and experiencing painful extensor spasms.

Despite having a loving and caring family, Sarah found life very difficult before she transferred to a residential placement. She was often uncomfortable or in pain, especially when her extensor spasms were uncontrollable, which could cause her a great deal of distress. Consequently, it would be hard for Sarah to focus on things around her. Her communication skills were at a low level – around P2(i) – which meant that though it was sometimes possible to read Sarah’s body language to understand her needs and wishes, she wasn’t able to communicate actively or in an organised way.

It took several years of the multi-disciplinary team working with Sarah to see any change. Care and education staff were able to support Sarah to be engaged in social and educational activities, but only when she wasn’t overwhelmed by her physical needs. Crucially, the nursing team were proactive in implementing effective medical regimes for feeding, control of chest infections and muscle tone, and management of pain. In addition, physiotherapy and occupational therapy staff worked to achieve better posture and the right wheelchair for Sarah, so that her spasms and pain were reduced.

These measures transformed Sarah’s experience of life, so that instead of being overwhelmed by physical discomfort, she was now able to engage more fully with people and events around her, benefit from the educational curriculum, and learn communication strategies with the help of the speech and language therapy (SaLT) team.

The implementation of intensive interaction and the total communication environment by staff across the campus enabled Sarah to become an active participant in daily life and to express her own opinions. She has learnt to use eye-pointing to make choices from objects, pictures in her communication book or symbols on an E-tran frame (a low-tech communication aid). She is becoming proficient at using eye contact to say “yes” and averting her eyes to say “no”, and at using a simple voice output communication aid (VOCA) to give a greeting or join in an activity. She now makes full use of varied tone in her own vocalisations to have a say and make her needs known. She has even been using an eye-gaze computer to access simple computer programmes independently. As she moves on to an adult placement, Sarah’s communication skills are now rated at P3 (ii), which represents an astonishing rate of progress.

Moses’ story

Moses is a young man who is full of character and fun, and also has many challenging behaviours. He has severe physical and learning difficulties. When he began a 52-week placement at the school, at the age of 15, we could see his potential but he would frequently become so emotionally agitated that he would lose control and become very difficult to support. This loss of control was clearly as distressing for him as it was for the staff supporting him, and was making it impossible for him to access any learning or build relationships.

A whole-school approach was clearly needed. Some of the main elements involved in this were:

  • the school’s assistant psychologist, with input from a local consultant clinical psychologist, devoted many hours to observing, analysing and setting up recording systems for Moses’ behaviour patterns, looking for triggers and ways to help
  • a behaviour support plan was put in place, with collaboration from residential, education and therapy staff, to be implemented throughout the campus
  • intensive staff training programmes were initiated, focussing on challenging behaviour, physical intervention and breakaway techniques, and deprivation of liberty (DOL) legislation. All staff teams were involved in careful planning of Moses’ environment. He has been placed in a quiet residential unit, with just three others, where there is a “safe space” room (set up in conjunction with the local DOL team). The educational setting has a low-stimulation “white room”, a multi-sensory room and an arts studio, providing different levels of appropriate stimulation. He has an individualised timetable with intensive staff support throughout the 24-hour curriculum
  • an occupational therapist (OT) specialising in sensory integration was brought in to advise on a “sensory diet” to engage Moses in constructive ways. This has been implemented by all staff, particularly the OT and residential teams
  • a consultant psychiatrist became involved to advise on medication to reduce Moses’ anxiety, agitation and aggression without affecting his levels of engagement
  • the physiotherapy team provided frequent hydrotherapy and other physical sessions, not only to meet his orthopaedic and physical needs, but also to make constructive use of his extra physical energy
  • the SaLT team provided input and training in intensive interaction to maximise Moses’ enjoyment of relationships and develop his interpersonal skills.

Three years later, Moses is unrecognisable as the boy who first arrived with so many challenging issues. He is learning how to manage his own behaviour, and is usually calm and controlled and able to engage inquisitively with learning, relationships and leisure. He is a joy to take out on trips – something that previously seemed unthinkable – even participating in some of the scarier rides at theme parks and enjoying a zip wire experience on an adventure holiday. Moses derives great pleasure from life and people and as he approaches adult life, he now has a real opportunity to achieve his full potential.

By developing her communication abilities, Georgie can now have greater control over her life.Georgie’s story

Georgie is a 17-year-old with cerebral palsy, which affects her so severely that she finds almost any independent movement impossible. She is completely dependent on others for her health, mobility, education and care. Her health issues dominate her life, as she is prone to chest infections, needs constant oxygen, and is frequently in pain due to severe spasms. She is registered cortically blind and her most reliable means of communication is to give an eye blink to say “yes” in answer to a simple question.

During her five-years in residential placement so far, Georgie has received intensive input from the whole multi-disciplinary team at the school:
•    The care team has provided one to one attention to all her personal and pastoral needs
•    The education team has given her an individualised curriculum specifically tailored to her needs and abilities
•    The nursing team has helped to manage Georgie’s complex health needs, reduce pain levels and keep her free of infections
•    The physiotherapy team has worked to maintain joint movement, actively develop trunk and head control and functional movement, and ensure twice-daily chest physiotherapy
•    The OT team has worked to provide comfortable seating and mobility, and to help Georgie gain access to ICT equipment
•    The SaLT team has helped Georgie develop her communication abilities through the total communication environment and intensive interaction.
Most excitingly, Georgie has been working hard to learn how to use an eye-gaze computer with voice output – which allows her to access simple computer programmes, including vocabulary for communication – by just looking at the screen. Previous attempts to train Georgie’s vision for communication had proved futile, and it wasn’t until the eye-gaze system was able to pick up where she was looking that we found out that she had functional vision. For the first time in her life, Georgie is able to tell us independently how she is feeling and what she would like to do.

Georgie is not only able to enjoy many of the things that an able-bodied teenager would enjoy – going shopping, listening to music, having pamper sessions – she is also able to make choices throughout the day, make her voice heard and have a say in her own life.

Making a difference

As the stories above illustrate, a structured and consistent multi-disciplinary approach can make a huge difference to the long-term life opportunities of those with PMLD. For me, it is inspiring and motivating to know that it is possible to have a significant impact on the lives of children with even the most profound and complex needs. There is always more to learn and it can be very challenging work, but I feel privileged to be part of a team that gives children with PMLD the intensive input that they need to fulfil their potential.

Further information

Janet Trebilcock is a speech and language therapist and Head of Therapies at Action for Children Penhurst School, Chipping Norton:
www.actionforchildren.org.uk/our-services/our-schools/penhurst-school

Comments   

#2 Samantha Robertson 2013-02-05 10:45
PMLD residential
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#1 Joanna Grace 2013-01-04 10:54
I have worked with students with PMLD, it was a pleasure and a challenge in equal measure. Your multi disciplinary approach is admirable. I now write sensory story resources for charities to engage with students with PMLD. Most are available for free. Used in a structured way over time they can support learning and engagement.
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