The big B, benefits…
When it became apparent Charlie had something wrong and particularly when he was diagnosed we were encouraged to apply to the DWP (Department of Work and Pensions) for Disability Living Allowance. Right from the off we were adamant that we did not want to claim any benefits- Charlie was our son, we were both working and we didn’t need ‘charity’. It was regularly mentioned in paediatric appointments at the hospital, at Portage and even by the physio- but no, we did not want any help.
Pride comes before the fall– it is well known that disability costs more. Scope have published details that having a disabled child can cost £300 more a month than without that disability. Whether it’s simply washing more (CP makes coordination of cutlery rather off…)
or replacing worn though clothes (crawling really wears through trousers quickly that are designed for standing kids) or therapies or equipment. Simple things like bikes have to be adapted for disability use (see Adaptations post- when I get to it…) or buying specific disability bikes can add hundreds of pounds to the cost of a normal one.
In the end we relented and allowed Portage to refer us to our local Action on Children branch, Kaleidoscope. I am extremely grateful for the support given to us at Kaleidoscope; we have only used the facilities a few times but one such help was Form Filling. Those that have, know and those that haven’t yet, will find out- filling in the forms for Disability Living Allowance is a form of torture. Not only is it long, complex and requires lots of evidence, worse for me is that we had to detail everything that Charlie couldn’t do. It felt like muckraking and it highlighted all the bad- it was a very depressing time. Without the lady at Kaleidoscope (a former Civil Servant) guiding and emotionally supporting us through the form we would have been devastated- she was even able even able to roughly approximate what the outcome would be. The help was vital and anyone needing to fill in forms such as this for a loved one, I would recommend a form filling service through a charity.
Not only did Charlie’s DLA help us to do more for him it also opened other doors. A DLA acts almost as a gateway benefit- you can access other help because of it.
Charlie has been able to get a BLUE BADGE parking ticket- very helpful obviously due to his mobility. Charlie was actually able to get his BLUE BADGE at 2 rather than 3 due to a directive in our local area (worth enquiring about). Again, as a result of a local council initiative Charlie was able to get 15hours of free nursery funding as a 2 year old- in an effort to mainstream children with disability.
We have had to move to help accommodate Charlie’s needs- we have moved to a house really beyond our finances but again Benefits have helped somewhat. As the house we bought was bought with rooms that could be devoted to Charlie’s care (therapy/play room and bedroom with shower room attached) the council were able to reduce our Council Tax banding.
There are many more potential benefits that are available- be sure to ask your council, particularly Educational Support as they are a wealth of information. There can be help with vehicles through MOTOBILITY, energy bills, club discounts even VAT exemption on adaptations and disability products.
Due to the stigma, we nearly didn’t take DLA- it would’ve been a huge mistake. As someone told us ‘it’s not for you though, you can’t means-test a child!’