Primary School problem and the DDA

[bonger34]

Hello Everyone

Firstly, I'd like to say that there is a wealth of useful information on here, so thanks to everyone for posting.

We have a daughter who has moderate hypermobility syndrome, she is in Reception class at the moment. She has some pain and fatigue, especially at the end of the day. She is very clumsy and often falls awkwardly hurting herself. Up to now she has broken her leg once and fractured it another time. (prior to school)

We did our best to explain the situation to her school, and with a lot of struggle some help was provided although the school cited budget issues for giving us what we want. At break and lunchtimes she is separated from the rest of the children (at our request) because when she is in the main play area she gets knocked over so easily and has suffered major bruising and head injuries. We are asking the school to separate the infants and junior play areas (as a lot of other schools do anyway - the thought of an 11 year old running full speed into her doesn't bear thinking about) and provide some additional supervision for our daughter during break and lunchtimes. We don't want our daughter to be separated from others (she is allowed a different friend to stay with her in a segregated area) as it will affect her social inclusion. Mentally, she is spot on and doing great. We have had an OT assessment done and she is fine. She doesn't need any help in the classroom. Part of the problem is that she looks perfectly fine, its just bump into her a bit and she falls badly as she struggles to support her body weight when falling due to hypermobility/lack of core strength. We do a lot of activities with her, as well as her physiotherapy to boost her strength. She is improving, which is good.

As I said above, the school is against this to date. Upon doing some research, we come across the DDA. Reading the DDA, it comes down to :

a) Is hypermobility recognised as a disability - it should be of course, but is there a precedent
b) Are the changes we are asking for reasonable - we think they are

Forgive me if some of this is naive, but we're just getting to the point where we are talking with other parents, etc with similar issues.

If anyone has any experience in quoting the DDA at schools, or taking matters further I'd be very much interested in hearing from them.

Many thanks

Bonger

[Stone]

HMS definitely can be recognised as a disability (note: be a bit wary saying hypermobility without saying syndrome, it makes people think everything is fine!). HMS is incurable so the "long-term" bit is satisfied - the key is whether it has a "substantial impact" on her "normal day to day activities". That's up to each patient (or their parents) to decide.

The best place for info is this site - get the info straight from the horse's mouth.

Stone

[christianne]

Hi
One of the answers to the school's reluctance due to funding is to get your daughter a statement of special educational needs due to her physical condition(it doesn't mean she has to have learning disabilities-my extremely bright son has one). This means that the extra supervision and different things she may need as she gets older in the school arena will be funded by the local authority and so the school won't have to. Anther thing is to get a health and safety assessment done (the local authority should be able to arrange that) and the assessor can recommend that she have more supervision.We had this done at primary school,and it was helpful.Hope this helps
Christianne

[bonger34]

Thank you for the replies.

There seem to be multiple agencies around that may or may not be able to help us with the school. Can anyone advise on any particular agency or body that helped them most to get the school to understand her situation and not have us dismissed as over anxious crazy parents? We are trying to work with the school, but of late they are being quite difficult and twist everything around to make us look like bad parents which is quite upsetting. Any views extremely welcome.

Reading the DDA I'm sure it applies in our case, but I'd prefer not to quote that at the school unless we really have to...and would prefer to work with them - assuming we can get a suitable level of co-operation.

Many thanks

[Traceydeborah]

Hi,
Unfortunatly, school often dismiss this as just being a bit bendy or its just growing pains. My 9 year old son has got a full time statement of 30 hours 1:1 support. I would not have got this if I had not quoted DDA. My son has been classed as gifted, he is statemented purely for his physical needs with EDS and pain. You have to get tough when it comes to schools and local authorities. Sorry.

Love Tracey x x x

[madmum]

I have had lots of trouble with the school my son is in. He recently has been bullied over his hms but school say there is insufficient evidence. My son has physical difficulties with writing and running and the kids take the mick. Last year the head called in social services as i was asking for help for him! I hope his high school will be more helpful. Have you spoken to the school s.e.n.c.o? Try them. Otherwise try the local education authority.

[Fizz]

Hi, in my experience, having had 2 children who needed "special consideration" (for want of a better description) at school, you need to get a letter from a hospital consultant before most schools will agree to anything they view as different from the norm. Unfortunately, local government departments, including education, generally don't respond to evidence from GP's as they are seen as too accessible - that is, some of them are viewed as being willing to put anything in a letter to get you out of their surgery! Similarly, as parents we are seen as possibly suspect as some parents do lie in order to get what they want. So, whether you agree with this view or not, the best way to crack school is to have a consultant's letter supporting what your daughter needs. Even if you have this, you need to be vigilant and check that the school isn't saying one thing to you and doing something different with your child. This isn't (usually) malicious on the part of the school. The problem is that with limited resources, a much wider range of pupils in school compared to times gone by, and pressure on all schools to achieve a "good" or "outstanding" evaluation when OFSTED inspect, individual needs can get overlooked. And we all know it doesn't help when your child looks fine from the outside. Having said this, as in all walks of life, you can get head teachers and class teachers who just don't want to know or who actively take a dislike to parents or children. I firmly believe they form a small minority, but this is not much consolation if it's your family involved.

However, for most of us, it is usually possible to get some or most of what our children need by persevering and not taking no for an answer. Keep a copy of all letters to school and make a written record of all conversations. That way, if something is promised and doesn't happen, you know who made the promise and when and can use this evidence to take things further. Mentioning the DDA in letters can have a very positive effect. Most schools do want to do the best for your child and at the very least, they won't want to be caught out in breach of discrimination legislation.

Hope things go well for you.