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RE: [IPk] SEN statements children with diabetes

Hi Karen

I do hope that Sarah has a great time at camp and you all have a great time.  I
will look forward to seeing some photos later.

 I spend literally hours and hours on the internet on the UK CWD parent's email
forum and following up phone call or email referrals from DUK or JDRF dealing
with parents whose children are having problems at school.  Lack of support, 4
year olds being told to "take ownership of their diabetes" which basically
means  "we dont want to spend the time, or have the responsibility of looking
after a child with type 1 diabetes" however schools think that it's OK for a 5
or 5 year old to manage their condition alone!!  We still hear all the time
about poor support and discrimination exclusions, banning from school trips.
Very, very few children with diabetes have managed to get a statement.  I think
of out of the 180 parents on the UK CWD list, only one, possibly two have an
actual statement of SENs, yet most of the children do receive DLA at the middle
or higher rate and some get Carers allowance.  There is also funding School
Action and School Action Plus  which is suppose to provide funds for so many
hours support.  For instance, around lunchtime when children may need their BG
levels monitored and someone to make sure that they eat their lunch and help
 administer injections if they are too young to do this alone. Schools have been
given funds for support for some children with SENs (learning difficulties or
Medical needs)  but they are very reluctant to spend the money on diabetes and
many schools will do anything they can to avoid having to spend the money, as
the money is not "ring fenced" for spending on SENs and frequently the schools
regard the money in their budget as their money to spend how they like.  There
is often resentment from schools when they receive a child which will use their
resources and parents have told me they have overhead staff complaining about
having "these" children who make a demand on their budgets.  Apologies to all
school who are not like this and do do a wonderful job of supporting children
with diabetes.  We do know of schools where the support is excellent and have
seen some examples only this week.  However this is a stark contrast to what
most children can look forward to.  One parent recently had funding for a
certain number of hours a week but the LA failed to pay the school the funding
 which caused problems and has left the parent in the position of having to
herself and ask for the school to be paid.

When someone is disabled, people expect them to be in a wheelchair, or have a
guide dog, or hearing aids.    People just don't understand that a child can be
 disabled without looking disabled. Here lies part of the problem. How can this
happy, healthy looking child, possible have some life threatening chronic
condition?    Of course, many parents who have children with diabetes, do not
consider their child to be disabled, but it is partly because diabetes is not
seen as a disability by many, that schools and LEAs (Local Education
Authorities) do not always recognise the importance of providing good support
and care.  Or, when a school does realise that the needs are time consuming and
sometimes complex, they are not getting the necessary support from the LEA or
PCT to obtain funding for the extra care needed for those children in the
nursery, infant and early junior school years.

One of the main reasons I set up the UK CWD parents list was because of the
awful care Sasha had at school and the continuing problems with lack of support
at school, discrimination, no one to help young children in infant and nursery
to help support children with injections and blood testing.  Most LAs dont even
consider diabetes to be a SEN even though medical conditions like diabetes are
legally classed at SENs.  Most parents find that they are caught in the cross
fire between the LA and schools when it come to trying to access support.

Your toes would curl if you heard of all the problems.  We have had quite a few
 children have to leave school to find other schools because the schools will
 provide any support. The LEAs actual have NO Legal POWERs to enforce schools
to comply if they do not want provide support. We have been told this by LAs
themselves and this is confirmed by the Dept of Children Schools and Families
(formerly the DfE) A request for a statement is nearly always turned down
whether this is for diabetes or any other medical conditions.  This is
documented in articles on IPSEA.


 In 2006 when I got John Davis INPUT on the case, he set up meetings with
from the UK CWD parents group and DUK and JDRF.

So the UK CWD mailing list has an Advocacy Group and soon will be have our own
website which is under construction.

 With John Davis we have formed a School Action Group which consists of INPUT,
CWD Advocacy Group , JDRF and DUK which is trying to deal with the
discrimination at schools.  I dont even think that DUK realised the extent of
the problems.  It has taken us years for them to recognise this after telling
them for such a very long time.  We are currently waiting for a meeting with Ed
Balls but it will be someone from the DCSF rather than Ed because of course he
 is too busy to see us and has already written many replies to our letters
that if the school your child attends wont help then find another school!!!
Hardly a solution when you think most schools dont provide good care and you
 cant always have the school or your choice and you other children may already
at the school who is not providing diabetes support.

 We know that there are children with diabetes on pumps with statements, but
are few and far between and this doesnt set a precedent unfortunately.
 To appeal against a decision made by the LEA one has to go to a SENDIST
(Special Needs & Disability Tribunal). In a normal court precedent is binding.
Once made, a ruling applies everywhere, but Sendist tribunals are not binding,
so each time there is a problem, new parents have to go through the whole thing
again.  So it doesnt matter if one child with diabetes has a statement or a
child with another condition has a statement each case is seen as a separate

 If you would like to write up a pro-forma which may help someone get support in
school it would be great if you could write down how to go about it and it can
be put on our new website (when its up) under ways of obtaining support at
school,  heading.  Though even though we have parents who have been successful
in getting support and it seems to be more assessable in the North of the
country in areas like Leeds and Nottingham we still have parents using the same
advice but failing to get support.  Essex for instance is one of the worse
places for diabetes care in hospitals and schools.

I have been going on about this problem for years and it's now 9 years since
Sasha's experience in infant and junior school and for most kids nothing has
changed.  Kids are barred from trips, parents cannot work because they have to
 go in to do blood testing or injections. Some parents have been told that their
child can only attend part time because there isn't enough money to pay more
support.  It very common for parents to be asked to take kids home in the
afternoon because the classroom aide wont be there or is sick.  Many parents
have to go on school trips because there is no support.  Other kids are barred
because the school wont have the parents their either.  Even when one child in
 Burton had one to one care the child had to remain outside the school gate
his nurse turned up and also was unable to attend school if this nurse was off
ill which she was quite often.

It goes on and on

This is the report that our group wrote not long ago.  It has been updated now
with even more cases, but I haven't had time to spell check the updated version
and get Jeff Hitchcock to upload it in PDF form

A report by the UK Children With Diabetes Advocacy Group, investigating the
range of contemporary educational experiences of children with diabetes at
school in the UK today.

Well you did ask.............................


> SEN and Jackie
> Wow... didn't realize it was hundreds. seems we need to set up something or
> some kind of pro-forma to help everyone. Sarah has had a full time SEN carer
> funded for 33 hours since she was 4, I also just got a SEN statement for a
> friend with a 4 year old who just started pumping.. so there is a precedent.
> It's definitely advisable to get parents to apply for DLA first (under both
> day and night care) as this then helps the SEN process. It saddens me that
> so many kids end up running high to avoid hypos at school and are
> sacrificing their  long term health for the convenience of the teachers.
> Let's put our heads together to see how best to tackle this.. do you think
> us setting up some standard letters for parents to use will help? Feel free
> to email me off-list. I'm around for the next 2 weeks and actually kids-free
> as Sarah left this morning for Sweeney and David leaves at 5am with the
> cadets for a hike in Bavaria! I'll do what I can to help.. I think the more
> diabetic kids that can get carers.. the easier it will be for future kids.
> This really should be automatic..child needs continuous care, constant
> monitoring, full inclusion of school curriculum and needs administration of
> life saving medication... over dose can be fatal, therefore must have carer.
> FULL STOP. We need to end this discrimination against diabetic kids and
> ensure they can all look forward to a healthy future.
> Karen Persov
> From: email @ redacted [mailto:email @ redacted]
> Sent: 16 June 2008 14:47
> To: email @ redacted
> Subject: ip-uk-digest V3 #1392
> contact: HELP@insulin-pumpers.org

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