We are a family in West Yorkshire. My son has XP. He is now 14. We used to receive Disability Living Allowance DLA but it has now been revoked. I have read all the comments on this group and have applied them within my Mandatory Reconsideration Notice letter to the DLA office. I used words unable to walk SAFELY and RELIABLY but unfortunately they still have decided to not allow DLA.
In a nutshell they have said that now he is 14 he is capable of looking after himself.
My take on this is that they simply are not prepared to listen to any appeal. It is simply about cost saving for this current government. They clearly know what XP is and its dangers especially with all the documents and information I have provided.
Meanwhile the government can continue without challenge to take more tax out of people and chose not to distribute it to where it is needed. Champagne anyone ?
The illness had not changed but the government has. So why previously was it a YES and XP was seen as a danger but now it is a NO ?
Can anyone give me any advice . Should I pursue it to the courts or are they right to say that now he is 14 years old he can look after himself ?
Has anyone else been through this ?