Let’s make DLA fair for heart children

Every year thousands of babies are born in the UK with congenital heart defects. Others develop heart disease during childhood. I think most people would recognise that these children have a disability.

Even once they’ve had the surgery or surgeries they need, many of these children will continue to live with the affects of their illness.

Many will deserve to be awarded Disability Living Allowance (DLA) to help them with their day-to-day struggles.

So it’s astonishing to me that the DLA Assessors’ Guidance doesn’t include ANY information about congenital, inherited or acquired heart disease in children. Not a single page.

I worry that this means that those tasked with the difficult job of deciding whether a child is eligible for a DLA award are not armed with all the information they may need.

As a consequence, how many children are being turned down for support they need and deserve? How many more are having to go through an arduous appeal process?

Tiny Tickers is campaigning to do something about that. We’ve joined forces with other national congenital heart charities to push for CHD information to be given to assessors. Today we’ve been in Parliament – urging MPs and Peers to write to the Department of Work and Pensions on behalf of families affected by CHD.

Our request is simple – give the assessors information and guidance about congenital heart defects. After all, it is the most common congenital birth defect, and much less prevalent illnesses are included in the guidance.

We’re not saying all children with CHD should have DLA. We’re just saying that assessors who make those decisions should have all the information they need. That seems pretty logical to me. And fair.

If you think so to, you can support our campaign by signing the petition here, and sharing it with your friends. You could even Tweet or write to your MP. If we all shout loudly enough about this, we can make change happen.

Thanks for your support, as always.

Jon, Tiny Ticker’s Chief Executive