Barriers to education for children with Ehlers Danlos Syndrome

Ehlers Danlos Syndrome is a genetic connective tissue disorder characterized by pain, frequent dislocations, and fatigue. In many patients it affects the vascular system leading to cardiac and bleeding issues.
I undertook a self selecting survey about the support children receive in the education system when dealing with EDS/hypermobility and got 273 respondents.

Of the respondents, 54.1% of respondents children had a diagnosis of EDS, 37.4% had a diagnosis of hypermobility and the rest were suspected or under investigation.



The majority of children, 60.4%, were receiving and education in mainstream school, 11.5% home educated, only 2.6 non mainstream, 9.3% were in college and university. 
When a child has a chronic illness and takes more than 15 days off education, (they dont need to be consecutive) they are legally entitled to alternative education like medical school, online education or  home tutoring funded by the local authority. However, only 2.6% had online education or tutoring provided by the local authority and a tiny 1.1% had secured a place in medical school. 

A worrying 3.7%, ten children, were not receiving any kind of education at all.


Attendance can become a problem if not appropriately managed in children with chronic illness and disability. Schools are pushed to attain high levels of attendance in their students and in turn offer students rewards for 100% attendance. This is a contentious matter amongst those with chronic illness and disability as 100% is impossible due to medical appointments alone and no fault of the student. 
Happily, 44.5% of respondents had encountered no real problems with attendance issues and medical absences were marked as authorized absences. However, 16% (42 respondents) had received warning letters, 6.8% (18 respondents) had been threatened with prosecution, 2.7% had school raise "concerns" to social care for medical absences and 0.8%, that is 2 respondents, have been prosecuted for low attendance, which can include a fine and possible jail time.

Home education is one possible way of supporting a child with chronic illness or disability in a school system that puts so much value on high attendance. Currently home education is in the firing line and there is a bill making its way through parliament looking to develop a register of home educating families. This is down to ideas that home education is sometimes used to cover up abuse or indoctrination into extremism. However in many cases, home education isn't even a choice. Out of our respondents that home educate, 49.2% felt pressurized into removing their child from mainstream education, 33.9% removed them because they felt that education wasn't meeting their needs and home education would be a better option and only just under 17% electively home educated. That means that out of 2734 respondents, 10 are electively home educating, so elective home education remains very ,much in the minority, but is being seen as a way for schools to reduce numbers of children with low attendance, or being used by parents of children unsupported in the school system. This is despite, as I have said,  it being law that any child who has 15 or more days absent with ill health should be offered funded home tutoring. It is illegal for local authorities and schools to refuse this, but many still do due to budget concerns. 

One way to support children with chronic illness and disability to remain in education is through a Education and health care plan (EHCP).
EHCPs are put in place for children who have extra needs and replaced the SEN register, EHCPs were supposed to encompass physical needs as well as educational needs in order to better support children and young people, up to 25, to access education. Of our respondents, only 26.2% had an EHCP in place, 6.7% had one in progress. A large proportion, 38.6% had never attempted one, but worryingly, 13.5% had never heard of a EHCP and 15% were refused an EHCP. More information and support is obviously needed in order to put these in place to ensure that children with extra needs can access education. Health, social and educational professionals need to be pro actively putting forward children for EHCPs which come with extra cash in order to facilitate the childs needs. 





The most important question we asked is "What could be done better?" Many of those that responded to this question were asking for things that are already their legal right, EHCPs, EHCPs being stuck to, home tutoring and online education funded by the local authority and for professionals to take time to actually understand and support children with EDS and hypermobilty. A major theme seems to be societies disbelief when it comes to invisible illness, something that many people have experienced. This should never be allowed to manifest from professionals, particularly those professionals involved with children who have chronic illness and disability. A change in how we as a society view disabled and chronically ill as having less value is desperately needed in order to enable these children to access the education they are legally entitled to.

 I have included all the responses below, but have edited some if i felt their was a risk of identifying the respondent. 

Listen better tools to help 

Get an OT in school 

Understand 

Online school

Offer flexi or part time schooling especially for art and science courses you can’t take online.

Listen to the children

By listening to child and parent concerns, taking them seriously and attempting to meet the needs of the child, rather than dismissing them as ‘over anxious’

We changed daughters primary school as they never met her needs, they threatened to fine for absence even with medical evidence. New primary were supportive, got echp in place and supported her fully. This has continued into senior school. It proves that it depends on the management of each individual school how they deal with each individual case and if the Sen dept are good you are lucky, if they’re not our children suffer, and that’s not s fair system.

Training for staff

Better understanding of the condition and how it differs from one individual to another. More tolerant to my sons needs. He goes to school sometimes having 4 hours sleep and his hands are very mobile yet they expect him to write far too much even when it’s painful. Some teachers are better than others. Frustrating to say the least partly because he looks normal!

More access to online learning

Be more efficient. To arrange and have meeting with the relevant people to put a plan in place at the school took almost a year, way too long and my son's education suffered as a result

More flexibility eg school sixth form would not met her drop an ‘ A’ level ...

Feedback

Knowledge of how hypermobility affects folk

by acknowledging  he has over bending joints which cause him pain.

Removing the ‘padding’ - non essential things

Learn more about diagnoses...Change policies to authorising absences for medical appts.

Understand better about conditions at how can worsen in puberty and as child as another diagnose put echp in place

With more understanding and knowledge,

More breaks in the day

Think at times could do with reduced hours

Communication between medical and school better

Better systems for providing work to be done at home and keeping track of where he is in the curriculum. (None of his teachers were able to tell his new LA tutors where he was up to and what he needed to cover.) Also LA home tutoring to kick in earlier. My son was at 30% attendance and they still said he was attending too much to get any support!

Very hard slog when my child was at school. I was continually polite but firm. My daughter wasn't believed some of the time and had support taken away from her but in the end I went to the LEA and they supported my daughter. They set up meetings every 6 weeks and acted as a mediator between school and us they were very understanding and supported my daughter fully, believed physio and drs reports and implemented lots of assistance. She got 50 % extra time in exams (she is dyslexic too) a reader, rest breaks, iPad, travel bursary to get to school as she was walking 2 miles on crutches when I had to go to work. They started an EHI C but she left for uni. Uni have been great about her absences as she has been in hospital several times this academic year with recurrent infections and had surgery. Despite this she has caught up the work with the right support and her motivation and has got a first in the first 2 years of her degree. Proud mum.

not waited for 2 years for an education

The EHCP could actually work!! It was only put in place (via tribunal)  but hasn't been stuck to... the school have done nothing in the EHCP. LA have been great in providing e-learning though.

By listening to us with regard to his basic needs, supporting him, helping with EHCP instead of hindering.

By listening and not just trying to get what they want rather than what is best for my child

Training professionals, about hypermobility and the difference between hypermobility and hypermobility syndrome/EDS, all professionals that come into contact with children, our child was in a special school, all I can say is they hurt her, traumatised her, she now has a fear of schools, being left, she suffers OCD, attachment issues, as well as her HEDS and other rare syndrome

Better way of catching up on missed school work

understanding and accepting medical needs

Better understanding EDS so he is not accused of lying about his condition and the pain that goes with it

They could try reading consultants letter about not making him do contact sports, every week we have calls from school wanting to know why he doesn't play rugby/football etc.

Better understanding by ALL agencies, flexibility of funding options, more online options

Lockers for storage of all the things they need, for those children who have a diagnosed condition - there's a lot of weight to be carried to and from school every day, on public transport, especially with musical instruments, PE kit etc as well as everyday books, pencil case etc.

By sending more work home when she is absent

More understanding of hidden diseases.

By understanding that the same condition doesn’t mean exactly the same symptoms.

Be inclusive, follow the health plan, believe the young person and accept they may need alternative support.

Better understanding of this condition for a start. How EDS affects not only joints but other bodily functions like PoTs and MCAD. Obtaining a EHCP and having home tutors when off I’ll with fatigue or pain will be a huge benefit to children struggling in full time education. Stop blaming parents and reporting parents to SS. This is emotional abuse in itself. Parents need much more support with children with these complex conditions.

Still need a bit more understanding of illness.

Provide emotional support, work when away from school & generally be all Inclusive

Understand the condition more. Authorise hospital appointments even if they have lots. Understand that everyone with the condition is different.

More believing of parents so that they then support the child accordingly instead of blaming the parent and leaving the child to fail

Lots of support has been given at uni already

Providing a tutor years ago

Flexible timetable and EHCP and suppport

Flexible time table

Listen and actually help the child

To provide funding for those in home education, to sit exams as and when they want to. At the moment home educators are forced to pay for exams out of their own money, despite paying for the school education and exams through our taxes. Equality should be for all children, who’s parents have paid their taxes for it!

Automatic help instead of having to apply for extra funding and proving all over again your child is disabled enough to need extra help . I did homeschool for a year but needed to put her back into education to do her gcse . Her attendance was that low she wasn’t even entered for them . Now she’s at college it’s the same all over again redoing her gcse . No one understands EdS

Give them enough money to make the changes to the school buildings that they want to!

Believe parents about behavior at home

Listening to the parents

Learn about the condition would be a start

I chose to home educate but can see from friends’ experiences that school would have been a nightmare to navigate with my daughter’s needs. Out of interest I calculated that by March this year her attendance would have been 45% had she been at school, possibly less as this was a reflection of what she couldn’t do that would normally be ok if she was well.

The current school is brilliant with a care plan in place a echp isn't always needed . However, the last school were only interested in getting money from her

More understanding of invisible disabilities

Actually help the child in the environment

We never knew we could have got home tutored. They refused to provide work too

they have no understanding how this affects children on a daily basis most of them dont want to know how it affects them

Be flexible and recognise that each child is different and has different needs.

Seriously considering Home Ed as daughter has been out of any formal school setting for three years in September 18. Had to move schools as they disbelieved us and blamed me,

Provide a,safe environment and understand lower attendance. .

Not enough support or funding

I feel we are very well supported

Both my children were referred to SS for emotional abuse. One is diagnosed Jhs and the other hEDS. Oldest is now 18 and college are much better, no EHCP but they are more understanding and she is only there part time so manages better than at school.

Understanding there limits especially fatigue

Making appropriate opportunities for rest breaks during lunch etc - they are good as far as corridor pass, lift pass, variation to uniform all given.

If people were more aware of the condition and how it can affect them, they may be more accommodating and not just scared of what could happen and deal with things as they do happen.

More contact whilst studying at home due to poor health.

Greater understanding of fatigue, anxiety, mast cell reactions, pain with hEDS. Greater awareness of invisible disability that ebbs and flows in severity. Greater acceptance of long term health problems on mental health, particularly predisposition to enlarged amygdala and anxiety.

Inform the parent that their child should have an Individual Healthcare Plan

Better education for teachers. Better understanding of absence due to illness. Help and support for those in education. Funding for those who home educated children with chronic illnesses. Support for those who are home educating from authorities in a positive way.

I found private school more understanding.

My child aged 15 has only had a few issues with EDS so far so has not impacted on her education greatly.

Quicker process with LEA and School for Home tutoring

To be more informed about the condition and how it affects our children on a day to day basis, for 3 yrs I had to fight to get help for my daughter and at times I felt very lost and alone , but I joined support groups self educated myself on the condition and effects . And it became easier . Main stream school should be educated on the physical & mental health effects of these conditions on our children and be able to support their pupils .

I found that private school was more understanding. Social services became involved whilst at mainstream as they did not believe/understand eds issues. She is coping ok at uni. Still has extra time for exams etc. With consultant support.

More educated in illnesses and asd

Not to judge what they cannot see and listen more.

Just a basic understanding that’s non judgemental. It’s so hard age but be seen lacking would be a start

Be aware that tiredness is not due to not sleeping properly and give extra support for this.

have believed her when she said she was too ill for school and not labelled her a school avoider. they reported her to social services, who dismissed it but it did a lot of damage to my child, more emotional/mental health issues now.

Stop acting like attendance is all a child has to offer.

Better communication (willing) with parent/carers, lower numbers, listening to needs, not shouting or humiliating children in front of their peers, not repeatedly accusing them of 'making it up' when they can't understand the work and ask for help - especially when there are medical reports and evidence of very low memory processing difficulties. Not taking away supports that are already in place and working, recommended by professionals and child wants because the teacher feels it's not appropriate. Floating TA between several children if they are struggling, exception from spellings or anything that lowers confidence when they are repeatedly scoring zero, it just crushes self esteem. Don't continually ask children to write the same piece of work out 9 or 10 times because it's "not good enough" when they are proud of their final piece in that batch, praise rather than say it isn't good enough, don't then stamp it as independent work when you've intervened on each attempt - because that's not independent. Finger tips flex which makes it really hard to write, he should have been given a laptop or allowed one to be used but the teachers wouldn't allow... could go on - sorry a sad old situation! Happy now in home ed!

Classroom and toilets were up a set of stairs - some days needs wheelchair. Low numbers work well but the children in provision were varied, many having very outward autistic behaviours. My child also has autism but tends to go inward. He found this really unsettling. They did provide laptops which worked well. No adjustments on PE, although it was individual e.g. using gym machines, it could still be high impact on ankles etc. No flexibility on days if very fatigued or quite area to go and lay/sit in.

Have a better understanding of illness and how fluctuating it is.If more support and my daughter not continually been questioned on symptoms I wouldn't of felt the need to home educate her.

Not record absences incorrectly. Not prosecute parents who's children are under hospital awaiting diagnosis. Not refuse access to senco. Not lie about referral to Social Services. Not lie about EHCP. Read and act on all medical reports sent to them and record facts and meetings accurately. Pass documents and reports on when child progresses to middle / upper school. Inform all involved teachers of childs condition / status (better internal communication) and agreed support. Actually implement agreed strategies and support. Ensure work is sent home when this is agreed. Not withold information on support and concessions available. Refer to agreed appropriate supporting bodies timeously, especially when approaching GCSE. Not belittle or humiliate child for their condition or difficulties. Promote inclusion by peers as well as by staff. Act immediately on bullying and intimidation (by children and staff). Educate staff on lesser known conditions such as Ehlers Danlos. Listen.

By taking time to understand her issues and pay attention to what that means.

More awareness of what eds is and day to day issues and effects it has on the child.Took a long time and me insisting on meetings with her health professionals before they would put anything in place. This was despite letters with recommendations from her OT,physio and consultants. It was a constant battle as was an invisible ish disability. SeNCo needed education in what he was dealing with too as he didn't know how to deal with her as she didnt slot into any of his categories fully.

Increase their knowledge

Through educating children about disabilities that are invisible or variable. Other children have not been understanding and there has been some bullying. Has taken a long time to get good communication with teachers at secondary school. Once we got that have felt supported by school. They have given accommodations we asked for without need for ehcp

Read literature on illness.

More online content so sessions missed could be easily caught up on.

Time out, more understanding of symptoms and effects. Reduced timetable ie PE and other non core Lessons so can rest. Quiet area for rest or time out of noise busy pushy environment.

Having a 'Plan B' such as work for at home when he cannot attend...at the moment this takes far too long to organise.

Follow the advice given by the physio & Occupation Therapist, limited funding means school cannot meet her needs and she has been refused an EHCP so we are in a no win situation.

Funding from EHCP needs to be used for my child. School only providing funding for Maths/Eng despite being given adequate funding from LA to cover more online subjects with Nisai.