Schools in the UK have a duty to make reasonable adjustments so every child can have an education which meets their needs and abilities. Equality Act 2010. more needed.
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 EDS or HSD 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 hub will be required for all pupils with EDS or HSD although knowledge and understanding of how the sensory and social environment affects pupils is also crucial.
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. link with Pupil Profile.
Pupils with EDS or HSD often fidget. This is a way for them to manage persistent joint pain and discomfort. Sitting for extended periods of time, especially without proper back support, may be difficult for some pupils with EDS or HSD. 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 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. Please ensure all voices including the pupil are heard to make these adjustments. Older pupils in particular do not often like to be different from their peers.
Pupils with EDS and HSD 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 allowing pupils to leave lessons slightly early to beat the rush and allow them more time to get to their next destination; having a pass to be first in line in the lunch or assembly queue; having a pass to use the lift; giving permission to stay inside during breaks on days where symptoms may be particularly bad; having planned rest breaks throughout the day; providing a book bag on wheels or a secure locker to avoid having to carry heavy equipment throughout the day; having a ‘buddy’ to carry heavy items for the pupil; duplicate books for home and school. It might be necessary for the pass card to allow the pupil to rest in suitable designated space during the day even for a few minutes. For primary but particularly secondary pupils who often do not want to be different so this should involve them and their parents/carers.
Encouraging good hydration is important. This could be achieved by allowing access to drinking water at all times. Pupils should also 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.
EDS and HSD 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 EDS or HSD 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. Pupils with fine motor difficulties sometimes find it easier to write with a pen than a pencil so consider this option too. Where writing is extremely difficult, a basic keyboard and screen, such as an AlphaSmart, could be considered.
Pupils with EDS and HSD may have been given hand exercises to do by their physiotherapist. These could be discreetly encouraged in class if hands become painful or tired.
Sitting and writing for long periods, such as in exams, can be very challenging for some pupils with EDS or HSD. Where a young person with EDS or HSD 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 will be helpful for some pupils with EDS and HSD, depending on how their condition affects them:
It is important to make sure the invigilator knows that there is a pupil with EDS or HSD sitting the exam and what adjustments to usual procedure 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 child’s development. Children and young people with EDS, HSD or hypermobility 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 HSD 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. Everyone involved in working with young people and sport needs to be aware of the issues relating to hypermobility, sport and performance, and to consider ways to minimise risks, in order to prevent injury, prepare young people for sport and to optimise performance / facilitate optimal recovery through appropriate rehabilitation.
In terms of exercise and sport, what each individual with EDS or HSD can cope with will vary hugely and this should be respected. Some pupils may be more at risk of ligament sprains, joint subluxations (partial dislocations) and dislocations because of joint laxity, poor proprioception and coordination and the fragility of their ligaments and tendons. This, however, does not mean that a pupil with hEDS or HSD should not participate in sport. It means that, unless a doctor or physiotherapist tells them not to do PE, then common sense should prevail, the risks should be minimised and, where applicable, weighed up against the benefits. Sometimes just providing an alternative PE programme, or fitness activity, can be the most pragmatic thing to suggest.
If a young person with hEDS or HSD is fit and has good control of their joints, their flexibility and their extra mobility may be an advantage. If, however, a child is struggling with painful joints, subluxations, dislocations, fatigue etc., 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 HSD 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.
Focusing on activities which promote control of movement, coordination, graduated strengthening of muscles, stability of joints and careful cardiovascular fitness is helpful to pupils. Some may be able to better tolerate sports such as swimming, gymnastics and cycling, usually on a non-competitive basis (unless a pupil really wants to try and compete).
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 to master required movements or other simple exercises (examples in resources jg)
Monitor the pupil’s level of exertion more closely in extreme weather conditions, because heat and cold may add additional stress to a pupils’s autonomic (involuntary) nervous system and may affect their endurance and exertion level. For more information see:
Allow pupils to wear protective gear to augment mechanical support and proprioception. For example, braces, strapping, or supports prescribed by the pupil’s consultant or physiotherapist or orthotist. These can be provided by occupational therapists or orthotists and pupils might need them at different times of the day. For example, finger splints on one day, knee braces on another day or maybe a wheelchair.
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.
Be receptive to a pupil who reports certain symptoms, such as joint pain and fatigue. Be aware that symptoms and their severity can change significantly from one day to the next in those with EDS and HSD. A pupil may seem able to do an activity with little problem one day and then struggle greatly with it the next. If a pupil does get injured, it needs to be remembered that rehabilitation following injury may take longer in some individuals with EDS or HSD due to slower healing times and reduced proprioception.
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.
Children and young people with EDS or HSD may experience bladder or bowel problems. These include urinary incontinence, urinary retention, urinary infections, cystitis, constipation and/or diarrhoea.
Reasonable adjustments could include permission to use the toilet during lessons or without having to ask such as pass card. In some cases the pupil might need to go up to 3 times in one lesson. The pupil might also want a prompt card. It should also be considered that pupils with EDS or HSD may need more time in the toilet.
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 EDS or HSD 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 or robots for pupils who are very ill or online zoom or teams.
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 child 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.
We have 8 senses. Taste, smell, touch, sight and sound. Then we have proprioception, vestibular sense and interoception sense.
The vestibular sense helps us to maintain balance and know where we are in relation to the space around us.
Proprioception enables to know where we are and our limbs are without directly looking at them.
Interoception in an internal sense and helps us know if we are hungry, thirsty, need the toilet, anxious or importantly, in pain. Interoception also affects the interpretation of emotions or emotional regulation. (Quadt, 2018 Goodall 2017). This means pupils might have a racing heart, tense muscles and shallow breathing but not realise this equals the emotion of fear. If there are problems with any of these senses (people with EDS or HSD often have poor proprioception), the likelihood of trips and falls increases, especially in crowded places.
There seem to be some links between hypermobility and autism but very little is known about the relationship at present. Some research is here (link resources /references): Some people with hypermobility-related problems may find strategies approaches used for autism helpful. It is mentioned……research…. that autistic and neurodivergent pupils have differences as well in in proprioception, vestibular sense and interception. So knowing when they are hot or cold, knowing if they are hungry or thirsty and equally important knowing if they are in pain. Often pupils with symptomatic hypermobility are in constant pain and don’t recognise a new pain until it suddenly overwhelms them. Or simply unaware that their ankle has perhaps dislocated as used to pain but for other pupils this would be overwhelming. Same with hunger or thirst or toileting issues. Due to sensory processing disorders, clothing can be problematic like seams, labels and texture of cloth. A sensory audit or profile is always of benefit for everyone as well as checking the physical and social environment. Link to sensory audit. link to awareness of interoception exercises.
For some pupils and young adults there are many co-occurences with allergies. These might be direct allergies with food or indirect allergies like Mast Cell Activation Disorders/Systems (MCAS) which means the body is over sensitive to foods, the environment, smells, chemicals, material and so on . Link to references
[Jane – can you recommend a good link for education strategies for autism we could include here please?]
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 garments (worn under clothes) are also increasingly being used by people with EDS and HSD. Very often compression garments are used. These are useful as they help with proprioception issues, knowing where their limbs are in space. It also helps with blood circulation as often pupils and young people have hypermobility issues with temperature (leading to Raynaud’s) and keeping the blood circulating and not pooling in lower extremities.
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 EDS or HSD when they are on a school trip.
Suggested adjustments include considering an alternative trip to facilitate the inclusion of a pupil with EDS or HSD; 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 EDS and HSD 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 XXX. Amber are tasks which take a bit more physical or mental energy, for example writing for a long time or XXX. 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.