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Who Cares?: When you need to be on form, make sure hugs are ready

By Karen Anderson

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Filling forms is few people's idea of fun and some are so much worse than others.
Filling forms is few people's idea of fun and some are so much worse than others.

Karen Anderson on how to deal with the process of claiming benefits.

This month I had the job of renewing our boy’s PIP (Personal Independence Payment). It’s a horrible form that goes into lots of detail about how they cope with looking after themselves from washing and dressing to preparing food and drink to travelling and socialising etc.

But the worst thing is that it forces you to concentrate on everything that your loved one struggles with. This goes completely against the way we operate as a family – always trying to make life as easy as possible for him by managing the elements we know cause anxiety and focussing instead on the things he enjoys and that he can succeed at.

If you find yourself in this position, there are tips I can give you. Always keep a copy of each completed application and use them to help you complete the next one. The renewal asks you to comment on any changes, and if you don’t know what you wrote last, you might not know how to answer or inadvertently contradict yourself.

Hard though it is, for every question you must think about how things are on the worst day. When you spend your time maximising the positives and minimising the negatives, this goes against your whole being, but you must to get the best outcome.

Gather all the evidence you can to support your claim. Letters from charities that support you, school, care organisations, NHS professionals, whatever you can get.

There is limited time to get the application back to the DWP – when we got the renewal papers on 19 th June, the return by date was 10 th July and in no uncertain terms they say if you miss the deadline the benefit will stop. So be organised and don’t put it off.

It’s hard enough to do when you are not under pressure, but if you have to get it back in a few days and you realise you are missing a key piece of evidence, the stress will go off the scale.

Finally, once you have completed it, go and hug your loved one and remind yourself of just what a special person they are and all the positive things that caring for them adds to your life. When I did ours this time, the starkness of what the pandemic and two birthdays during it have taken from us was overwhelming.

We have lost his swimming with the social aspect that it brings, and the support of two children’s charities that he is no longer eligible for. I have also lost the parents’ support group that went with them. Then there’s the loss of the support and interaction of school, but no incoming adult services clamouring to help.

And the difficult acceptance that the years of planning for university didn’t work out for him but nothing has revealed itself as yet as a Plan B.

My goodness, I needed that hug after the form was finished! I now wait to see if they will try to call him for an interview this time. Having been named as his official advocate following an interview process, I thought last time that they wouldn’t, but they tried and I had to be very insistent that it wasn’t possible and would probably be damaging for him before they agreed to let me answer their questions.

My fingers are firmly crossed and my back up hugs are on order!

Karen is Mum to an autistic teenager and campaigns for the rights of unpaid carers to be supported in their caring role and involved in the decisions that affect their lives and the lives of the people they care for. You can find her on twitter @Karen4Carers.

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