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Invisible Illness or Disability – A Quick Parents Guide to SEND and the Law

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This is important and I apologise if this section is a bit heavy but it is a bit of a minefield for parents, particularly those new to the system.  As parents of a child with Ehlers-Danlos syndrome you may have questions like; ‘What support should my child have in school?’,  ‘Do they have a Special Educational Need?’ or ‘Should I apply for an Education Health and Care Plan?’.  There are no easy answers to these questions because every child with EDS will present differently.

The aim of the SEND (Special Educational Needs and Disabilities) reforms is to join up help across education, health and care from birth to 25.  This should be good news for our children who will most likely be accessing many services.

The first step regarding school is to read the SEND Code of Practice 0-25, it’s really quite accessible.  Our little zebras may fall into many categories within the school system, I’ll attempt to talk you through each one a little and what legislation may apply to them.

If your child has a disability then the school is required under the Equality Act 2010 to make reasonable adjustments for them and to ‘promote equality of opportunity’ and ‘inclusive practise by removing barriers to learning’.  SEND code 6.09/6.10/ Equality Act 2010 Chapter 4 4.12-4.29.

Health and Medical Needs

For children with Health and Medical Needs the Children’s and Families Act 2014 places a duty on schools to ‘make arrangements to support children with medical conditions’. An Individual Healthcare Plan, will specify the level of support required to meet their medical needs. It should also state a date for review.  Schools are required to have regard for the statutory guidance ‘Supporting Children at School with Health and Medical Conditions‘ DfE.  This is really important for our children who may be at greater risk of dislocations, subluxations, sprains, bruising and skin breakdown as well as urinary and gastrointestinal problems or allergies.

Special Educational Needs (SEN)

Some children with Health and Medical Needs will also have Special Educational Needs and may have provision under SEN support or an Educational Health and Care Plan (formally a statement of SEN).

Broadly speaking a child has has special educational needs if he or she has a learning difficulty or disability which calls for special educational provision to be made for him or her.  If they have a significantly greater difficulty in learning than the majority of others of the same age or have a disability which prevents or hinders them from making use of facilities of a kind generally provided for the other children.  The Children’s and Families Act 2014, part 3. If your child has a physical disability or a medical need such as EDS you may not think that they fit the definition of having a SEN, perhaps they are making expected progress in maths and English.  Refer to the SEN code ‘Identifying SEN in School’ and look carefully at the four areas of need.  These are; Communication and interaction, Cognition and learning, Social, emotional and mental health difficulties and Sensory and/ or physical needs.  You may find that your child falls into one of the categories.  For example, if they have additional needs which impact on them in school and require additional support above that which is needed for other children of the same age then they would have a SEN.  Similarly, if they have a disability but able to work without any difficulty they would have a disability but no SEN.  Read the definitions and be clear where your child falls.

So if a SEN has been identified then the next stage is to take action to remove barriers to learning, and this SEN support should be part of a four stage cycle; assess, plan, do, review.  This graduated response forms an ongoing cycle.

This should all be recorded,  it should have clear outcomes showing how your child is supported to make progress, targets should be set that are SMART (specific, measurable, attainable, relevant and timed).  Schools are able to have their own format for recording the support given to pupils receiving SEN support, many have chosen to stick with IEP’s as they are tried and tested and they have found that it works but they don’t have to under the new SEND code.  Progress should be reviewed at least three times a year within the cycle of assess, plan, do, review.  The SEND Code does not state that this review should be carried out termly but it would be considered good practice.

Education  Health and Care Plans (EHC Plan)

So when does an EHC Plan come into play? ‘Where despite the school having taking relevant and purposeful action to identify, asses and meet the SEN of the child or young person, the child or young person has not made expected progress, the school or parents should consider requesting an Education, Health and Care Plan’.  SEND code 6.63.  Basically, if a school can’t or won’t provide what a child needs then an EHC Plan can be requested by the school or by parents.  An EHC Plan is a legal document which sets out a description of your child’s needs (what he or she can and cannot do) and what needs to be done to meet those needs by education, health and social care.

As with children receiving SEN support, an EHCP or Statement is reviewed once a year but targets should be reviewed and set at least twice a year, this is separate to an Annual Review. Most schools do this every term, to evaluate the expected outcomes and planned next steps within school. (Two LA reviews a year for children under the age of 5).

As parents you should be fully involved in the review process.  This is important so that whatever level of support that your child receives in school that the provision is in place, regularly reviewed for effectiveness and adjustments made to secure progress.

Schools should have a process in place so that this information is communicated, be it in an Individual Healthcare Plans to IEP’s, with both you as parents and with staff.  If there is a change in staff then continuity must be ensured.  It is also important that all staff are aware of the children’s needs (from teachers and dinner ladies to the school nurse) so that if there is an injury, for example, then there is a clear action plan for dealing with it.  (All of this information should be included on an Individual Healthcare Plan).

What ever level of support your child receives I think that it is important to have a clear paper trail from day one, if your child has an Individual Healthcare Plan and no SEN support at this time you may have to apply for a EHC Plan further down the line.  You will need clear evidence to draw upon, what has been tried, what has had an impact, what hasn’t and why.

If your child has both a health/medical need and an SEN, either SEN support or an EHC Plan then ‘their provision should be planned and delivered in a co-ordinated way with the healthcare plan’. SEND code 6.11

Links/ Guidance

SEND Code of Practice 0-25 yearsSchool Duties  What you need to know (IPSEA)
What right does a child or young person with SEN or disabilities have to education? Check out the resources tab for a pdf on SEN Support for children and young people without plans in Schools and Colleges.

Updated list of statutory policies for schools from the Department for Education (DfE)

Disability Discrimination What you need to know (IPSEA) Check out the resources tab for an Is my child disabled? checklist
For the law relating to Disability Discrimination: The Equality Act 2010


Annabelle’s Challenge for Vascular EDS

Contact a family

Ehlers-Danlos Society

Ehlers-Danlos Support UK

HMSA (Hypermobilitiy Syndromes Association)

IPSEA (Independant Parental Special Education Advice)


Useful Posts

Dear Teacher (Part 1) An Open Letter to Teachers of Children with Invisible Illness – How to See.
Dear teacher (Part 2) An open Letter to Teachers of Children with Invisible Illness – What to Do.






  1. Thanks to you and also to EDS Support UK for posting on Facebook so that I saw it. Really helpful.

  2. Thank you – To be honest some teachers are not fully upto speed with the new changes since the SEND code was introduced, it was rolled out in schools with little training for the average teacher. There is no wonder that it is a such a minefield for parents. I'm glad that you found it useful 🙂

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