Level B descriptor

Description of needs: Very early developmental stage profound and multiple learning difficulties (PMLD)

Cognition and learning

• Children and young people will have a combination of learning, communication, physical and sensory needs (including multi-sensory impairment) and primary care and medical needs which place exceptional barriers to their learning.
• Will be learning at the very earliest developmental levels throughout their lives (equivalent 0-3 months) attention is likely to be fleeting.
• Will be totally dependent for all aspects of learning and personal care, including toileting, eating, and drinking.
• Engagement is through sensory experiences

Communication and interaction

• Will be at the pre-intentional stage of communication and will need to be with familiar adults that can interpret needs.
• Likely to communicate through physical responses to experiences, and sometimes eye movement, facial expressions, and vocalisations.
• Are likely to have very close relationships with their family and closest adults who will understand their needs. They may need to learn to move beyond very simple forms of intentional communication which are only effective with people close to them.
• Likes to be with another person
• Can sometimes give brief attention to another. person by looking at body movements, facial expressions, and vocalisations
• Interactions can range from shares person space – to taking turns using vocalisations, whole body communication.
• Turns towards a familiar /soothing tone of voice
• Familiar carers /adults will assign meaning to behaviours such as crying, stilling, increasing in movements
• Likely to express pain and discomfort using facial expression, body movements and vocalisation/crying.
• May develop intentional communication i.e. understands the intention in an interaction e.g. ‘finished’ /’goodbye’
• May learn to understand cause and effect and can make simple choices with objects present.

Social, emotional, and mental health

May show signs of distress such as crying, and others may opt out of taking part in the learning opportunities.

Sensory, physical, and medical needs

• Will have complex physical / medical needs which impact significantly on their lives, e.g. scoliosis, epilepsy.
• Are likely to have overall reduced life expectancy due to the combination of physical and medical conditions.
• As they get older and grow, the impact of associated medical and physical conditions is likely to increase.
• Will be at high risk of developing increased physical disabilities and joint abnormalities and associated pain.
• Will be fully dependent on customised wheelchairs and specialist seating and positioning arrangements.
• Will have very limited control over different parts of their body.
• May have digestive difficulties that may also impact on bowel movement.
• Will have complex medical conditions and medication regimes often throughout the school day
• May require alternative means of feeding such as PEG feeds (percutaneous endoscopic gastrostomy) either from infancy or during their secondary education.
• Are likely to have sensory impairments such as visual impairments, hearing impairments or multi-sensory impairments, including cortical impairments.
• May have increased incidence of respiratory difficulties.
• May require access to oxygen on a regular basis
• May require frequent or extended periods of hospitalisation due to their medical needs, including for essential surgery particularly during adolescence e.g. to treat scoliosis.
• May only be able tolerate their highly specialist wheelchair for very short periods and will require access to an Acheeva bed for large parts of the day, and regular repositioning
• May have degenerative or life-limiting conditions that will impact at school age, both at early years and at puberty.

Level B support needed

Curriculum, teaching, and learning

• An early developmental, individualised multi-sensory approach to the curriculum with targets jointly set by the multidisciplinary team including SALT, OT, Physio etc
• Consistent use of sensory cues and extended periods of time to respond to people, experiences and learning opportunities.
• Teaching that supports use of their voice / movements, switch control to communicate They will need to be taught to use these intentionally to make simple choices and to have as much control as possible over their environment. proactively and have some control over their environment.
• Specialist movement programmes such as Sherborne, rebound therapy etc (at least 1:1 support)
• Hydrotherapy to reduce/ limit spasticity, deformities and abnormal joint biomechanics and maintain mobility as well as to support communication development and enable curriculum access (at least 1:1 support)
• daily Intensive therapy support planned and monitored by the appropriate therapist to ensure an integrated approach (this will include SALT, OT, physiotherapy) and delivered throughout the school day by trained staff. Some children and young people may require 3:1 for parts of physio programme.
• High staffing ratios to support observation of responses to stimuli and inform teaching programmes.
• 1:1 support to acquire basic learning and social competencies.
• High staffing ratios to support small group / class lessons.
• At least 2:1 support for re-positioning between different pieces of specialist equipment throughout the school day.
• 1:1 support for postural adjustments when needed (this may be frequent) and personal care as assessed by moving and handling assessments.
• Adapted transport to access wider community resources (tail lift, wheelchair fixers)
• Children and young people with degenerative or life limiting conditions will need a curriculum which focuses upon maintaining skills for as long as possible and builds in alternative communication and control over time.

Environment

• An environment that supports appropriate moving and handling techniques including ceiling mounted tracking and electronic hoisting equipment. Staff will need to carry out risk assessments and review regularly.
• Easy access to hydrotherapy pool.
• Adequate space for the delivery of physiotherapy programmes and alternate positioning, and the use and storage of specialist furniture and equipment.
• Access to appropriate and well- maintained specialist equipment as recommended by medical, OT and manual handling assessments, e.g. specialist wheelchairs and seating, standing frames, Acheeva beds, wedges, rolls and balls to support postural care etc.
• An adapted environment that supports access for children and young people with limited mobility and sensory impairments, including for example
• sensory spaces / environments, sensory swings, trampoline, weighted jackets, bags etc.
• Rigorous infection control measures in place.

Multi agency and family support

• High levels of multi-agency support into and throughout their adult lives.
• High levels of support for all aspects of personal care, such as washing, dressing, and eating, as well as ensuring that everyone has access to high quality and meaningful activity throughout their lives. Good support is person-centred, flexible, and creative to enable them to learn and to achieve their full potential.
• Require their families / carers / advocates and involved professionals to advocate for them.
• A high level of communication with other professionals involved to ensure consistency between settings with joint target setting and monitoring, through a team around the pupil /family.
• Staff will need to work closely with parents to understand the child / young person’s responses to the environment. This is likely to include providing and coordinating support for families.
• Children and young people with complex hearing or sight needs will require a programme of intervention devised and monitored by a qualified specialist sensory teacher (HI/VI/MSI) delivered regularly by school staff
• Some children and young people will need support from the nursing team to train staff and to manage epilepsy, respiratory distress, medication, peg feeding etc, medication. This may include access to regular chest physio and suctioning to manage respiratory difficulties and / or regular access to oxygen and other specialist medical intervention. Some may require health care assistants.
• There may need to be regular liaison with hospital staff and support for delivery of individualised learning programmes while in hospital and in preparation for discharge.
• Those children and young people on an end-of-life pathway may require bespoke education packages delivered at home or in hospital and flexible transport arrangements to school to facilitate flexible attendance arrangements
• Some children and young people may need access to resources through continuing care.

Staff training and expertise

• Staff working with these children and young people require specialist and ongoing training to understand and meet significantly complex learning, physical, sensory and health needs. This will include training on:
• moving and handling (Manual Handling) training: postural care and extensive training to meet the needs of children and young people with PMLD to ensure competent safe practice and minimise children and young people risk to body shape e.g. contractures impact on health, mobility, and provision
• Delivery of integrated therapy programmes, including ongoing guidance and assessment of competency assessed by all health professionals (physiotherapists, occupational therapists etc.) to ensure effective support of complex healthcare and mobility needs to maintain wellbeing/quality of life
• Complex medical needs and procedures (e.g. epilepsy, dystonia, respiratory problems, dysphagia and eating and drinking problems), including ongoing guidance and assessment of competency assessed by health professionals (school nursing team)
• Personalised and functional learning, including total communication, support for choice and decision making, intensive interaction, observation, appropriate communication aids, assistive technology, body signing, pace of learning, concrete routine, and ‘coping behaviours’ (to their communication or other difficulties for example) which may present as challenging.
• Sensory impairment: hearing impairment and or visual impairment or a combination of both; and sensory engagement as sense of taste or smell may be affected by medication, and the child / young person may experience hypersensitivity to touch
• Working with families and other agencies, including effective co- production and support approaches.
• Risk management and safeguarding for children and young people with PMLD.