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With the help of Greg Mulholland, MP, the BDFA have met with Justin Tomlinson, Minister for Disabled People at the Department of Work and Pensions. This meeting enabled us to talk with him and his team about the process of applying for and award of Disability Living Allowance. We were also able to convey the enormous frustration felt by many families by a process which does not recognise the needs of children and young people living with this diagnosis.

After our meeting, Justin Tomlinson has agreed that as Batten disease is a neuro-degenerative disease, families who are already receiving the higher rate of the mobility and care components should not have to reapply for DLA.

He has also put Batten disease into the DLA guidance which the decision makers use meaning that they will no longer need to google the condition. The BDFA have been working with them to make sure that this guidance is correct and reflects the needs of affected families. This means that the people who are speaking to you on the phone should be able to clearly understand your child or young person’s condition.

We hope that this will be a huge help for families who will no longer need to reapply for DLA. Please ring the DWP if you have been sent a letter asking you to reapply if your child receives the higher rate of mobility and care and ask for this to be changed.
If you continue to have problems with the application process, are being asked to reapply or for more information contact Harriet: or 08000469832

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