Schools in the UK have a duty to make reasonable adjustments so every pupil can have an education which meets their needs and abilities.
Schools in the UK are required to take positive steps to ensure that disabled pupils can fully participate in the education provided by the school and that they can enjoy other benefits, facilities and services provided. Many of the reasonable adjustments which benefit pupils with JHS or EDS are simple and low cost. Due to the diverse way in which the conditions affect pupils individually, it is unlikely that all adjustments described in the toolkit will be required for all pupils with JHS or EDS although knowledge and understanding of how the sensory and social environment affects pupils is also crucial.
The Department for Education’s special educational needs and disability (SEND) code of practice states that schools must use their best endeavours to make sure that a pupil with special educational needs or disabilities (SEND) gets the support they need – this means doing everything they can to meet children and young people’s SEN. There is guidance on supporting pupils with medical conditions at school on the government’s website here and it is recommended that this is incorporated into the school’s medical needs policy.
All schools should have a clear approach to identifying and responding to SEND. Identifying hypermobility issues early is beneficial. Identifying need at an early point then ensuring effective provision only improves outcomes long term for the pupil. This applies to problems associated with hypermobility too. If pupils are being referred to occupational therapy (OT) or a community paediatrician on suspicion of dyspraxia then it might be of benefit to consider hypermobility as well.
Particularly for secondary pupils, who often do not want to be different from their peers, it is often more effective to engage and involve them and their parents/carers in discussing potential adjustments and strategies.
It is recommended that schools have a process in place for non-teaching staff (all school staff including transport) to be made aware of the adjustments which have been agreed for a pupil. It is ideal if the pupil can have a way to do this themselves with support, for example by using a card which summarises the information. The resources section includes useful templates.
Pupils with JHS or EDS often fidget. This is a way for them to manage persistent joint pain and discomfort, for some it is also a sensory need. Sitting for extended periods of time, especially without proper back support, may be difficult for some pupils with these conditions. The “W” sitting position (shown) is common amongst children with these conditions but should be discouraged as it stresses joints in the knees and hips. Sitting cross legged can also cause pain with symptomatic hypermobility so providing options would be of benefit.
Pupils should be provided with an adequate chair or a beanbag or something to lean against if they need to sit on the floor. Where pain is made worse by sitting cross legged, pupils could be given the option to work standing up. The use of cushions, wobble cushions, adjustable chairs, foot rests and the table height should be considered to help the pupil maintain a good posture.
Pupils with JHS or EDS may not have the same strength and stamina as their peers. This may manifest as having difficulties keeping up physically or even struggling to finish the school day.
Some practical solutions include:
Encouraging good hydration is important as it can help to manage some of the symptoms of JHS and EDS. This could be achieved by allowing access to drinking water at all times.
JHS and EDS can affect the wrist and finger joints, making joints unstable and painful. Pain, fatigue and autonomic nervous system effects can also make concentration difficult. Pupils with JHS or EDS often have problems with handwriting and may struggle to hold large or heavy books for prolonged periods, making reading difficult.
Grips to put around pens and pencils can reduce the impact of writing on unstable and painful joints. There are many different kinds from triangular pencils to large gripper ones. Try a range of different kinds to find the right one. Pupils with fine motor difficulties sometimes find it easier to write with a pen than a pencil so consider this option too. For pupils with slow handwriting speed but capable of writing you do not have to justify the use of technology assisted learning when providing it. SENCOs can record or demonstrate the difference between using it or not using it.
There are a number of interventions and schemes shown to help improve handwriting and fine motor skills, for example the Letter-join scheme, the Learn to Move, Move to Learn programme and Pegs to Paper, which improves writing ability mechanically. Where writing is extremely difficult, a basic keyboard and screen, such as an AlphaSmart, could be considered. Other helpful items are sloping supports, adaptive pens, pencil grips, foot raisers. Wide lined spaced paper is beneficial to those pupils who find fine motor dexterity difficult.
Pupils with JHS or EDS may have been given hand exercises to do by their physiotherapist. These could be discreetly encouraged in class if hands become painful or tired. It is important to remember that gross motor skills are easier to master than fine motor and both should be practised to increase muscle memory and strength.
Sitting and writing for long periods, such as in exams, can be very challenging for some pupils with JHS or EDS. Where a pupil with JHS or EDS has a history of needing reasonable adjustments in the classroom, consideration should be given to applying for exam access arrangements for the pupil when they sit exams. These can include providing extra time to complete the exam, supervised rest breaks, extra time or a scribe.
The following may be helpful for some pupils with JHS and EDS, depending on how their condition affects them:
It is important to make sure the invigilator knows that there is a pupil with JHS or EDS sitting the exam and what adjustments to usual procedures have been agreed.
For pupils severely affected by their condition, alternative ways of demonstrating competence might need to be considered, for example using oral responses instead of written ones using the tips in the writing section.
Being physically fit and participating in physical activity and sport is an important part of a pupil’s development. Pupils with JHS and EDS are encouraged to participate in appropriate physical activity and sport in order to facilitate their physical development and specifically to help keep their joints in place and to improve their coordination, muscle strength, stamina and confidence.
While there is an element of risk for everyone participating in sport, some are inherently more risky than others and contact sports should be avoided at all times for pupils with vascular EDS (vEDS) or classical EDS (cEDS) as the risk of trauma is too high and potentially life threatening for vEDS. Those with JHS or hypermobile EDS (hEDS) may be advised not to participate in contact sports, but, if determined to do so, the risks can be minimised by maximising strength, agility and stamina and optimising technique.
If a pupil with hEDS or JHS is fit and has good control of their joints, their flexibility and their extra mobility may be an advantage. Ensuring a pupil doesn’t stretch hypermobile joints further, or rest at the extremes of their range of movement, can help reduce problems as they get older. If, however, a child is struggling with painful joints, subluxations, dislocations or fatigue, a revised programme incorporating sports and physical activities which involve less risk is recommended. Additionally, inclusion of rest breaks, use of appropriate splints and strapping and allowing sufficient time for delayed recovery from injury, may be required.
Some sports and performance activities may be more of an injury risk than others, particularly contact sports and where sharp cutting, acceleration, deceleration and change of directions are involved. Decisions with regard to participation may need to be made in discussion with the family, physiotherapist and/or physician as to whether sports are too much of a risk and/or what adjustments need to be made.
Some young people with EDS or JHS can become deconditioned. Where this is the case, it is important to commence physical activity at a low level and to build up their stamina and strength gradually, allowing time to rest and recover.
Avoid activities involving heavy weights or intense muscular exertion such as doing pull-ups or carrying heavy ruck-sacks. Encouraging a pupil to find a sport or activity they enjoy, or would like to try, which doesn’t cause undue stress to the joints, can be a successful way of encouraging participation.
Give hands-on assistance and/or demonstrations to model the movements required. The use of mirrors to aid proprioception may help some pupils better understand body positioning and experience required movements.
Monitor the pupil’s level of exertion more closely in extreme weather conditions because heat and cold may affect their autonomic (involuntary) nervous system and their endurance and exertion level.
Allow pupils to wear protective gear to increase mechanical support and proprioception. These could be braces, strapping, or supports prescribed by the pupil’s consultant or physiotherapist.
Allow the pupil rest breaks in order to extend the overall length of participation and allow sufficient time for gradual warm-up and cool-down. Little and often can be better than a full session. Remember that the pupil may be doing prescribed physiotherapy outside of school hours. Parents may be able to ask their child’s physiotherapist to liaise with the school when appropriate exercise plans are being devised
Poor balance and poor coordination can be part of the conditions. Activities which improve balance and coordination should be encouraged but in ways that do not isolate someone who cannot pick up movements as quickly.
There is more information on the physical education page.
Pupils with JHS or EDS may experience bladder or bowel problems. These include urinary incontinence, urinary retention, urinary infections, cystitis, constipation and/or diarrhoea. This can result in pupils needing to use the toilet more often than others and/or needing more time in the toilet.
Reasonable adjustments could include permission to use the toilet during lessons or without having to ask such as through the use of a pass or prompt card. The pupil might also want to use a suitable app if allowed.
The use of an accessible toilet (with grab rails) may be needed for pupils with unstable knees or ankles or those who find it difficult to stand for other reasons (e.g. due to postural tachycardia syndrome (PoTS)).
A pupil with JHS or EDS may have frequent medical appointments. Their attendance record must not be penalised because of these appointments. Your school’s medical conditions policy should be clear on how these appointments are entered into the register.
For pupils missing school regularly or for long periods due to their condition agree a way to keep in touch and provide work to do at home such as blended learning. A dictaphone could be used to record missed lessons. Consider the use of communication aids such as Skype, Zoom or MS Teams or robots for pupils who are very ill.
Some pupils may not be able to cope with a full curriculum and may benefit from a part-time one. Consider that it is still important for a pupil on a part-time curriculum to enjoy their time at school. As well as being in school for their core subjects, can they also be present for some social interaction too, e.g. for a break, club or school trip?
Also see our section on school trips.
Due to the diverse way in which the conditions affect pupils individually, it is unlikely that all adjustments described in the toolkit will be required for all pupils with JHS or EDS although knowledge and understanding of how the sensory and social environment affects pupils is also crucial.
Research has shown that people who are hypermobile are more likely to be anxious than non-hypermobile people but the relationship is not yet understood. Similarly, some recent research suggests that people who are hypermobile may also have alterations in the ‘inner’ sense which controls awareness of hunger, thirst, needing the toilet, pain and anxiety (the interoception sense).
For example, pupils with alterations to their interoceptive sense may not be able to recognise when they are feeling anxious. They may need help to understand the link between for example, tense muscles, increased heart rate and racing thoughts and how they are feeling. This can be similar with sensing whether they are hot or cold. For example, they may know it is hot because the sun is shining and they know cognitively that the sun is often associated with heat but they may not be able to sense that they feel hot.
Support with altered interoception is only needed if behaviour is problematic. Adjustments to tasks or the environment can increase participation and functioning and reduce distress.
The more practice pupils can get of predicting these interoception inner senses, the better they will become at predicting, knowing and also understanding situations and how they are feeling. Training on interoception senses and awareness of self may be beneficial for themselves and others.
Adjustments in the classroom could include:
The pupil profiles in the resources section can help to establish a pupil’s sensory needs or preferences.
Some pupils may need some flexibility in what they are allowed to wear for school if there is a uniform. For example, braces worn to stabilise joints may be difficult to fit under school trousers or shirts; boots rather than shoes may be needed to support unstable ankle joints. Some pupils may need to wear orthotics (insoles) in their shoes.
Supportive or compression garments (worn under clothes) are also increasingly being used by people with JHS and EDS. These are useful as they seem to help to improve the sense of where the limbs are in space (proprioception) and may help with other symptoms related to blood circulation.
Pupils with disabilities or additional needs should have equal access to the social activities which are part of school life, including school trips.
A risk assessment approach is recommended to help plan for various scenarios which could happen with pupils who have JHS or EDS when they are on a school trip.
Suggested adjustments include considering an alternative trip to facilitate the inclusion of a pupil with JHS or EDS; a pupil attending a part of the trip or providing additional support to allow participation.
Pacing is an important part of the self-management of JHS and EDS and can help with fatigue and pain. Effective pacing helps to avoid a boom and bust cycle of energy and fatigue and can enable the pupil to do more. Various techniques can be used.
Working with a traffic light system can help to manage this well. Dividing activities into three categories depending on the level of energy they take creates a ‘traffic light system’. Green is for easier tasks, such as eating lunch. Amber are tasks which take a bit more physical or mental energy, for example writing for a long time or doing a short exam or test. Red tasks take a lot of energy, for example a PE lesson. These tasks are very personal to each individual and can be adjusted as such. There should only be one red task a day as these need time to recover from.
It can be tempting to dismiss reports of pain from a pupil or parent/carer because pain does not always have visible external signs. Pain is extremely complex and can have sensory and physical causes. Being disbelieved can lead to frustration, discourage reporting of pain and undermine trust and the communication needed to successfully navigate supporting the pupil.
It is important to defer to medical professionals and not to reject a pupil’s self-assessment- “toughing it out” without medical advice is not advised. Where there is no obvious sign of injury, determining whether injury is present is for medical professionals; it is important to collaborate with parents and health professionals so pupils develop a healthy and supportive approach to dealing with pain.
Pupils with JHS or EDS should have ready access to the first aid room for when they need help managing their pain or they could be allowed to carry a mobile phone for silent medication alerts. Ideally, they will have a pain management plan in place at school. This might include being allowed to leave lessons to take medication as required or having a system to alert the teacher (using cards) if they need to leave a lesson due to feeling unwell.