Today is a victorious day for the Type 1 community. The DWP have finally published the New DLA Guidelines for Children With Type 1 Diabetes. Wondering what this means for you and your child? Let me explain.
Children with Type 1 Diabetes are entitled to DLA (Disability Living Allowance) but the awards can be very inconsistent. Many parents have been left disappointed after being told their child was not elibible, particularly after the age of 12. It’s important to know that DLA is not means tested, so it doesn’t matter if you work or not, or how much you earn.
Parents have been busy lobbying MP’s to look at the guidelines that the DWP give to their staff that helps them to decide if a child should be entitled to DLA. On the back of this Diabetes UK, Neil Sykes from Families with Diabetes National Network and Dr Fiona Campbell, Clinical Lead for the National Children and Young People’s Diabetes Network have been working with the DWP to update their guidelines. Previous guidelines really didn’t represent the reality of a child living with Type 1 Diabetes.
Today the new guidelines have been revealed…..and yes they are much better. Well done to all involved and a massive thank you too.
So what is different I hear you ask?
Firstly the BIG win surrounds the age at which children are expected to manage Type 1 Diabetes without help. Previously this was 12 for those on MDI and 14 for those using Insulin Pumps. The guidelines have now been updated to say that children up to the age of 16 will need help from parents and carers throughout the day to manage this condition. It’s worth noting at the age of 16 you can no longer apply for DLA and you apply for PIP instead (but that’s a whole other battle).
The guidelines also take into account the new NICE Guidelines, they agree that in order to try to achieve these tougher targets a significant amount of work is required. Previously the guidelines gave the impression that if a child had good control and hadn’t been hospitalized in the last year that they needed less help!! Yes I can hear you sniggering at that one.
Other notable changes include the details surrounding night testing. In order to be eligible to receive the higher rate care component of DLA you need to demonstrate that your child needs help and supervision through the night as well as day time. Unfortunately the new guidelines state than night testing should only be required once or twice a week, as per NICE Guidelines. Many of us know this is not true and that Type 1 doesn’t go to sleep at night, highs and lows can be just as common, if not more so in some cases overnight. However this is no way the fault of those that campaigned on our behalf, this just demonstrates some of the issues with current NICE Guidelines. The good news though is if you can prove that regular night testing is required by supplying medical evidence you may still get the higher rate.
One line from the new guidelines, that I’m particularly happy about is this “They are unlikely to manage any night time test themselves.” When I last applied and was only offered Mid Rate Care I asked for a statement of reasons for their decision. In these reasons they suggested that my son (aged 10) could set an alarm through the night to do his own tests. Believe me they got a stroppy response to that one, when I told them in no uncertain terms that he wouldn’t be responding to an alarm if he was unconscious due to low blood sugars.
So that’s it in a nut shell, but before I finish this post, if your child has been turned down for DLA previously you can now reapply under the new guidelines. Before applying for DLA for a child with Type 1 Diabetes I strongly recommend you join this Facebook group, for help and tips on applying, it really is very valuable. Also here is a link to the new DLA Guidelines.
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