Child with fluctuating illness and effect on school attendance

[Runningtokeepstill]

Posted this originally in special needs education section. I'm trying to find out what my son's rights are (and mine as his parent) if he is only able to attend school 3-4 days a week.

He has had problems with chronic pain syndrome and pain amplification following a fall when he was 9. He's now 15 and the pain hasn't gone away. I'm aware of school and LEA policies regarding attendance and regarding disability. Unfortunately there doesn't seem to be much joining up of the 2.

There is support for children who need education because they are off school for say several weeks or months at a time (LEA provides e-learning). But if he can only attend 3 or 4 days then it just triggers all the automatic absence chasing protocols without necessarily taking into account his situation. And school staff just then look at how they can force him to attend.

He had to leave his previous secondary school as there was a total breakdown in communication and trust by the end of his time there. I won't go into it as it would take ages but it was horrendous and the school regularly asked us to home educate him due to his absences.

He's at a new secondary school and they've been wonderful so far but as he's now down to 65% attendance, I've been told someone will be contacting me to put "measures in place". I can't see what "measures" will be helpful as if he is in severe pain he cannot walk. His previous school pushed us to ask his consultant to sign him off as unfit to attend (much better for their absence figures) but I fought against this as strongly as I could because when he is having a better day, he should be in school.

What I want is for him to continue to go to school on the 3-4 days each week that he is able and catch up with what he's missed when he's been off. He's doing a reduced number of GCSEs so this should be possible. But has he got a legal right to this? I've searched endlessly online and found nothing except that his pattern of absence is seen as likely to be "suspicious". Yet I know he isn't the only child with this sort of illness so I thought I'd see if anyone else had found a solution.

Thanks for the reply PolterGoose,

Sadly there is no pattern. We tried a kind of part-time school approach at his first secondary but as he was still ill on random days it didn't help. It all got very stressful as the more I tried to push him in regardless of his pain levels, the worse he got.

Finally he ended up only to be able to access school in a wheelchair. Which sounds workable but it could take an hour or more to get him out of bed, washed and dressed, and 30 minutes or so to get into and out of the car at each end. Only to arrive at school and find he could not access some of his classrooms (the lift did not cover all of school) and he was left in a room with the school providing no work (although I always sent him with something to do). Then when I came to pick him up, on quite a few occasions he was left in this room as no-one had remembered to wheel him back. It wasn't one of the wheelchairs that you can move yourself, but even if it had been I'm not sure he could have got through the door unaided.

We withdrew him from school for a year and in that time he gradually stopped needing the wheelchair but still has regular pain flares.

His current school is much easier to deal with but I'm worried that they'll be under tremendous pressure to follow absence procedures which don't fit. It seems that children are expected to be either continuously ill or well and the system doesn't allow for anyone to be fit on some days and ill on others. He doesn't want to be signed off as unfit for school as he is fine for around two thirds of the time; but this is below the "urgent response required" threshold for absence and schools are expected to get the attendance up.

I would ask for meeting with the Educational Welfare officer and school. (phone up your LA and ask for the details of which one works with your child's school, often more than one in the LA)

Go into it - with a 'how can we work together' approach.

Make it clear that you are approaching them for advice and guidance due to your child's unique and particular circumstances. Show them you are not a parent keeping your child off unnecessarily - you are a loving, caring parent of a child with a variable medical condition who desperately wants to work with the system - much better that way that being seen as not complying with attendence laws and being fined and hounded to improve your child's attendance, when there is no choice in the matter - he is ill and can't always get to school - that is the reality - how can you all work together to improve outcomes for him given his restrictions?

Have you got all his needs documented? Are medical professionals supportive of you? - Am sure that if you have it all from a Dr that this is how he is - there is precious little they can do about his absence in real terms.

Very hard when you don't 'fit the box' on their precious attendance rules / figures... But I think you really want to be the one to initiate the meeting so you are really showing willing to address the issue and to get him the best support that you can.

I would want someone from parent partnership with me in the meeting to ensure that everyone was clear about the rules / law about children with medical needs.

I don't have any knowledge about the subject, but this document might be a useful one: www.gov.uk/government/uploads/system/uploads/attachment_data/file/269469/health_needs_guidance__-_revised_may_2013_final.pdf

This is statutory guidance for LAs regarding the education of children whose health needs prevent them from receiving a suitable full-time education at school. The document stresses repeatedly and in various ways that LAs must be flexible and address the actual needs of the child.

For instance, it says that "Local authorities should:
? Provide such education as soon as it is clear that the child will be away from school for 15 days or more, whether consecutive or cumulative" so it's obvious that your LA is wrong to provide supplementary education only to children who are off school continuously.

Also, IMO your son should be regarded as disabled - ie the school and LA have to make reasonable adjustments, under The Equality Act 2010. In his case, a reasonable adjustment is allowing for flexible attendance, as he is able! If you do a search on Google, there is a Code of Practice on Disability Discrimination in schools.

Thanks all for the replies,

asdmummy, I agree with the approach you have suggested. I have already approached the school asking to talk about ds and absence, that's how I found that they'd had a meeting about him and were considering "measures". Unfortunately the person I spoke to could not discuss this further as I was supposed to be getting a phone call from a senior staff member. She said she'd pass on my willingness to talk about this but so far no-one's got back. I'll need to try again if I don't hear soon. I have tried, where possible, to be pro-active as, like you, I think it shows them I am a concerned, involved parent rather than one who is sanctioning unnecessary absence.

saracen, thanks for the link. We argued about the 15 day rule at his old school and did manage to get e-learning (for pupils who are out of school) as he qualified due having an ongoing condition. This service is really aimed at children who cannot get to school at all and often does not fit well what is going on in individual schools. What he needs is not a set of separate extra work but work which links to what he is doing for his coursework. I don't think his new school is against providing this, it's just that his attendance is so low they are under pressure to be seen to be "doing something" about it.

Although ds has a dx - hypermobility syndrome, chronic pain syndrome and pain amplification, there is currently no-one medical working with him. Local CAMHS say they don't have the expertise to support someone where MH issues come from a physical cause and the physical therapists won't treat him as they say he has unaddressed MH issues which hinder his progress. Local rheumies don't think he is bendy enough to be seen by them. He had a consultant paediatrician involved but he could only really offer medication that didn't work. We have been round the houses with this for the last 6 years. He's actually been quite a bit better since we stopped trying to see people to get help so he's reluctant to get back on the merry-go-round again just to get evidence for school.

I just want him to be able to come into school when he can (which is still most of the time). I contacted the local authority Attendance Service to ask their view and was told that if he was regularly off he might need to be signed off as unfit for school. He's been through all that before and it wasn't helpful and if it happens now it will totally wreck his GCSE courses. Surely it is best to let him come in 65% of the time and facilitate his education that way rather than say if you can't regularly come in for 5 days a week we'd rather not have you at all!

Both of my other children have told me that all their lectures at university are available online. Its a pity schools can't do the same - it would help many children with SpLd. (Those who learn visually)