Early years setting (day nurseries, pre-schools, playgroups and childminders)
The Early Years Foundation Stage (EYFS) sets the standards for learning, development and care for children from birth to five years old. All OFSTED-registered early years providers must follow the EYFS, which states that providers must have arrangements in place to support children with special education needs SEN or disabilities.
When a child enters early years setting, staff may notice that they may have some physical developmental delays. Activities, such as toilet training and feeding, may require more support. Additional difficulties that may be apparent have been listed in the Key Stage 1 section, which follows.
All early years settings know that play is vital for all children. It is the way children explore and make sense of the world around them. Play offers opportunities to relax, express feelings, and develop social and cognitive skills necessary for school and later life. All children need the fun of play and learning opportunities.
If staff members have concerns that a child is struggling to achieve the core learning and development requirements of the EYFS, they must discuss this with the child’s parents and/ or carers and agree how to support the child. Staff must consider whether a child may have a special educational need or level of disability that requires specialist support. They should link with, and help families to access, relevant services from other agencies as appropriate. Further guidance on this can be found in Key Stage 1 and Key Stage 2, as well as 'Assessing the Pupil' below.
Key Stage 1
Key Stage 1 covers the period from Upper Foundation, through Year 1 and Year 2 (from five to seven years old).
While some children with muscle-wasting conditions may enter school in a wheelchair, (those with SMA or congenital muscular dystrophy, for example) those with Duchenne muscular dystrophy or neuropathies (for example, CMT), are likely to be walking. All children should be encouraged to join in activities as far as they are able.
Before starting school, it is important to have planning meetings to ensure the child, family and school are supported to meet these needs. Advice from an occupational therapist (OT) and/or a physiotherapist can be invaluable in deciding what type of equipment will help maintain the child’s independence. Some children may not yet be diagnosed with a muscle-wasting condition. A teacher might notice the child having difficulties, such as:
- struggling to get up from the carpet
- frequently falling in the playground
- poor balance
- slow when climbing stairs
- difficulty using apparatus in PE lessons
- tiredness during the afternoon session
- a noticeable change in stamina over the week
- poor handwriting because of weak pencil grasp
- slowness in eating food or weak cough
- frequently off school with chest infections
- difficulties with learning.
Teachers often notice how different one child’s mobility is from another’s, and this can help with diagnosis. If you have concerns about a child’s physical development, you need to discuss this first with the parents and then discuss making the appropriate health referral. It is important to remember, however, that while many children have co-ordination and movement difficulties, these are not necessarily related to a musclewasting condition.
Key Stage 2
Moving through Key Stage 2, Year 3 to Year 6 (from seven to 11 years old), children with muscle-wasting conditions, who have impaired walking, fine motor difficulties, or are wheelchair users, are likely to become more aware of the differences between themselves and other children. This awareness has implications for their self-image.
A child with a muscle-wasting condition, while usually still ambulant, will become weaker. Walking will become limited and gross motor skills and the muscles in the upper body will start to be affected. Provision of specialist equipment should be introduced at this stage.
It may be necessary to use specialist equipment, such as standing frames. If writing becomes affected, the pupil could require a computer or scribe. It is best to introduce alternatives to paper/pencil recording, i.e using ICT, before the child’s upper body strength becomes significantly weaker. As the physical difficulties increase, some pupils may present challenging behaviour as they begin to realise the implications of their diagnosis.
Some children with Duchenne muscular dystrophy may have specific learning difficulties; however these do not get worse as the condition progresses.
For a child with a muscle-wasting condition, there are likely to be a several external professionals seeing the child and guiding staff. It is helpful for ongoing review and assessment if the school keeps a record of the name, contact details, involvement and contribution of every professional involved with the child. A communication book, used by school and parents, provides a useful two-way communication channel for school and external professionals to keep in touch with parents.
While at school, a child may have many different needs to accommodate within the curriculum. It might be useful to use an individualised timetable to record when care is needed.
Things to be recorded on the form include:
- mobility and postural needs (changes in seating from wheelchair to class chair)
- therapy input from an OT or physiotherapist or use of standing frame
- wheelchair training or specific activities for children with learning difficulties.
It is important to keep a record of actual achievements against the plan. Information should be recorded about the child’s physical abilities and the assistance required for each activity. Keep parents informed when any activity has not been implemented.
Moving on to secondary school can be exciting, challenging and worrying for all pupils, whether they have a medical condition or not. As a teacher, you are aware of this and are experienced in helping new pupils integrate successfully and establish their place within the school. For those pupils with a physical and/or learning disability, as for those with some muscle-wasting conditions, it is important to plan ahead to achieve the same goals. There are people and organisations to help you. Your school will most likely have a SENCO/ASN Scotland, who is responsible for organising planning meetings and in-service training about the pupil’s needs.
Other sources of information and support include:
- other health professionals
- Muscular Dystrophy UK
- Trailblazers’ reports and top tips for young people, written by young people.
- Disability, Information, Advice, Support Service (England) – iassnetwork.org.uk (should be in every Local Authority)
- Independent Parental Special Education Advice (IPSEA) – ipse.org.uk
- Special Educational Needs and Disability (SEND) Code of Practice 20154 0-25 www.gov.uk
- Department for Education and Department of Health, England – applies to 0-25 years in education or training
- Children and Families Act 2014
- Enquire (the Scottish Advice Service) for additional support for learning www.enquire.org.uk
- Children in Scotland National Agency for voluntary, statutory and professional organisations working with children and their families in Scotland www.childreninscotland.org.uk
Key Stages 3 and 4
Not every pupil with a muscle-wasting condition will require additional support. For those who do, the scale will vary considerably. For example, it may vary from requiring extra time to get from class to class, to one-to-one support for all educational needs and personal and domestic activities.
Schools should identify and support pupils with SEN. Pupils may be supported from within the school’s own resources under SEN support, or an Education Health Care Plan (EHCP) (a Co-ordinated Care plan in Scotland, or an SEN Statement in Northern Ireland) provided by the Local Authority (LA).
During this time of transition to adulthood, it is worth remembering that pupils with a muscle-wasting condition will experience the same feelings as their peers. In addition, they may be dealing with feelings of uncertainty about how their condition will affect their future hopes and aspirations.
For those with a life-limiting, progressive condition, parents and all adults involved need to liaise closely to agree how much, by whom and when the pupil is to be told about their condition. Schools may wish to consider establishing a support network for these pupils and for staff and peers who work closely with them. (This may be the case for siblings of children with muscle-wasting conditions too.)