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Major victory as disability living allowance guidance changed

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Diabetes campaigners are today celebrating the Government making long-sought for changes to the medical guidance on Disability Living Allowance (DLA), making it easier for children with Type 1 diabetes to meet assessment criteria, should their parents choose to claim.

DLA, a non-means tested and tax free benefit, has historically been awarded to parents of children with Type 1 diabetes on the grounds of them being carers, to help them cover the costs of looking after a child under the age of 16 who “needed more looking after than a child of the same age who doesn’t have a long-term condition”.

Claims were being turned down for children aged over 12

But around three years ago Diabetes UK had an increase number of calls from parents of children with Type 1 diabetes who were experiencing problems in claiming DLA awards. In particular, claims were being turned down for children who were aged over 12 years old.

Diabetes UK believed the content of the medical guidance for DLA decision makers, as it stood to be a misleading basis from which to assess the care needs of children with Type 1 diabetes and called for it to be reviewed.

The charity began intensive lobbying but this did not result in a commitment from the Department of Work and Pensions (DWP) to review the guidance. Diabetes UK then worked with the Families with Diabetes National Network (FWDNN) engaging families through social media and asked them to get their local MP to raise the issue with Mark Harper, the (then) Minister of State for Disabled People.

Last year, Diabetes UK and the FWDNN achieved their goal when a meeting with the DWP resulted in their agreement that the guidance needed to be updated. The guidance has now been significantly altered to incorporate issues raised by Diabetes UK, specialists and families.

'It failed to reflect an understanding of Type 1 diabetes'

Chris Askew, Chief Executive of Diabetes UK, said: “For too long the guidance to Disability Living Allowance misrepresented Type 1 diabetes in a way that left the challenges faced by families of children with the condition unrecognised and their claims too often rejected. It failed to reflect an understanding of Type 1 diabetes and how hard it is to manage, both in young children and also in later adolescent years, when the onset of puberty and growth hormones can affect both the way that Type 1 diabetes manifests itself and a young person’s ability to manage their condition.

“This newly revised guidance is a big step forward for families and children with Type 1 diabetes because it clearly acknowledges the challenges and extra care required to manage this complex condition. We, along with others, have worked for many years to affect this change so I am delighted that the DWP has finally revised its guidance to reflect and account for the needs of families with children who have Type 1 diabetes, as we know that till now it has been hugely frustrating and inconsistent. Being able to get some financial help, if necessary, can make a huge difference to families who are often at breaking point.”

Neil Sykes, from the Families with Diabetes National Network, said: “There was an assumption that children with Type 1 diabetes should be able to look after themselves from the time they began secondary school. There was no understanding of the fact that managing the condition in teen years comes with a whole new set of challenges. Looking after a child or a teenager with Type 1 diabetes is almost a full-time job, with no let-up day or night. Furthermore, research shows that more intensive management improves blood glucose levels for children and therefore reduces their risk of developing long-term complications. Through sharing their own experiences and frustrations with their MPs, our wonderful families ultimately played a key part in getting the DWP to listen to and act on our concerns by revising this guidance.”

'This updated guidance is a real victory for parents of children with Type 1 diabetes'

Dr Fiona Campbell, Clinical Lead for the National Children and Young People’s Diabetes Network, worked closely with Diabetes UK to achieve the changes. She said: “This updated guidance is a real victory for parents of children with Type 1 diabetes. Children and young people with diabetes need significant help and support to manage their condition and parents will now have a better chance of helping them to achieve this goal.”

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