Starting School

Hi, my daughter is starting school in September. She's 4 years old and was diagnosed with type 1 diabetes just over a year ago. We manage her diabetes with a pump and continuous blood sugar monitor. Keiki still, rather erratically, produces some of her own insulin and her additional insulin requirements can therefore vary quite considerably.

She sometimes recognises hypo symptoms, but not always. Clearly at 4 years old she can’t manage her diabetes with any degree of independence.

She starts school in September and I have a meeting scheduled with the school to discuss how her condition will be managed.

I would be very interested to hear from other parents of young children as to how their schools deal with things?

Many thanks.
Sarah

Matt, thanks very much for your response.

My meeting with the school was, frankly, a disaster.

Their standpoint is that they will not accept her at the school unless she is statemented and receives funding for dedicated, full time support.

Apparently it is not their responsibility to obtain this funding, as she is not at their school. If she had been diagnosed whilst attending their school they'd of applied for it, but as she isn't it is my responsibility to obtain the funding and if she doesn't get it they are within their rights to say it is not safe for her to attend and therefore exclude her.....this is what they told me.

I was extremely shocked by this response and, of course, will be researching.

If anyone has any experience with statementing or getting additional funding for support at school I'd greatly appreciate hearing about it.

Many thanks.

Hello everyone. Firstly thanks very much for all your replies and my apologies for the long delay in responding. I want to give a full update on how discussions with the school progressed.

After the initial meeting with school I did a lot of research including speaking with the advocacy team at Diabetes UK (who were EXTREMELY helpful) and contacting my area SENCO.

From this research I concluded that statementing was not the appropriate route for our daughter, however, it was also clear that I agreed with the schools standpoint that they needed additional support. The state primary school standard staffing ratio is 1 to 30 in morning sessions and 1 to 15 in afternoon sessions. Our daughter’s nursery school has a staffing ratio of 1 to 6 and they had been really struggling to manage the additional needs of the pump.

I should comment, for those of you not familiar with pumps and continuous blood sugar monitors, that whilst it enables us to manage our daughter's condition FAR more effectively than our experiences of injection therapy, the demands of this technology are significant. It is not a simple matter of pushing a few buttons when she eats.

I therefore wrote to the school acknowledging their concerns that our daughter needed additional support but stating very firmly that I considered it was the schools responsibility to lead the charge in identifying how we were going to address this requirement and who was going to fund it. I said I did not consider statementing to be the appropriate route. I was very clear that I would do all I could to assist with identifying how our daughter could best be supported but that we needed to work collaboratively and creatively. I also stated I did not accept that our daughter’s school place could be in jeopardy due to her condition. The school responded positively.

The Area SENCO agreed that he considered our daughter needed additional support and proposed that we should apply to the Joint Funding Committee to obtain funding for that support. This committee meets on a monthly basis and makes immediate decisions (unlike statementing which I understand typically takes at least 6 months).

The school, nursery school, diabetes nurse, community health team and I worked together to put together the case for the committee to consider. Our case requested funding for full time dedicated support and I am relieved and delighted to say we were successful.

Clearly my daughter does not require (and indeed we would not want) someone sitting right next to her monitoring her for the duration of her school day. However, what she does need is someone that can attend to her at a drop of a hat without disrupting normal schooling and who is comprehensively trained in diabetes/the pump/CGMS. What has therefore been agreed is that the school will receive funding for an additional classroom assistant who will be dedicated to our daughter but who will also be an additional resource to the class as and when that is appropriate.

I consider this to be an excellent outcome for us, the school and, I hope, a sound precedent for others.

Thank you very much for your kind feedback and for attaching the useful links. I totally agree that it's great when hard work pays off and it is indeed a great result. However, it is a shame that individuals have to drive these processes and work so hard to get the best treatment and support...these things appear very random to me and that's hard to reconcile.