Diabetes benefit altered for families

The claiming process providing financial help for children with type 1 diabetes has been changed to “account for the needs of families” dealing with the condition.  

Diabetes UK said changes to the medical guidance for Disability Living Allowance (DLA) has been altered and now “clearly acknowledges the challenges and extra care required to manage the condition”.

DLA, which is 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.

It was introduced to help cover the costs of looking after a child who “needed more looking after than a child of the same age who doesn’t have a long-term condition”.

Three years ago Diabetes UK said it saw an increase in complaints from parents who said they were experiencing problems claiming DLA.

‘Misrepresented’

The main issue reported was that claimants, whose children were aged 12 and over, were being turned down.

Diabetes UK called for the DLA medical guidance to be reviewed as the charity said it formed a “misleading basis from which to assess the care needs of children with type 1 diabetes”.

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

Working with the Families with Diabetes National Network (FWDNN), the charity managed to contact all affected families 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 met with the Department of Work and Pensions (DWP) during which it was agreed the guidance would be updated.

The guidance has now been significantly altered to incorporate issues raised by Diabetes UK, specialists and families.

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 FWDNN, 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.”