February 25, 2014

DLA - filling the disability forms

You might have noticed I wasn't here this past week. There were no new posts, no tweets, no Facebooking, no me anywhere around the web. You might think it was because it was half-term and I was busy doing all these wonderful educational but still fun activities with the boys, and really who am I to burst my image as one of those mums who uses every opportunity to have out door fun with their kids? An image I apparently have, judging by the fact that I was nominated as best family travel, innovative and crafty blogs. Me. But the sad truth is we left the house once this whole half-term and even that was so we could go to Yon's Outreach program half-term coffee morning and meet his advisor. Hidai and Ron left the house a second time to see the unveiling of Dennis Bergkamp statue at the Emirates and the match.
No, my week started with two sick kids, continued with benefits and disabilities, and ended with depression and anxieties. So I wasn't here. in fact I wasn't anywhere, I unplugged all electronic devices (except for playing endless rounds of Candy Crush and Pepper Panic), cancelled all calls or meeting people, and pretended like I can just hide under the covers for a week. Disappearing is my coping mechanism, it is what I do every time I feel the abyss closing in on me. It all started on Monday when both boys felt rather poorly and I decided to fill Yon's DLA forms. DLA is a disability benefit and choosing last Monday, the day of the Benefits Street big debate, to fill the forms might not have been such a good idea. Mine is not a political blog or one that thrives on controversy, and so I have not written my opinion on the war on benefits before, but I do have to say this, it feels awful. Filling this form was (still is as it's not yet finished) one of the hardest hurdles to go through. The form is divided into 3 parts - the details part, mobility part and care part. I started crying in the details part with the doctors and tests and diagnosis. The mobility part was all about how he needs help moving around because, you know, he doesn't see the around. But the care part, that one broke me. The point is to show how much assistance Yon needs during the day. You would think, like me, not much. He wakes up - goes to school - comes back - plays a little - goes to bed. Right? Not really as it seems. Because you start reading the questions - problems with moving around the house? yes; problems with food? yes; problems with noise? yes; problems with bath/toilet? yes; problems with clothes? yes; problem with speech? yes; problems with communicating? yes; needs supervision to make sure he is safe? yes; needs help with development? yes; needing extra help at school? yes; and of course, problems with vision? yes.
The only questions we answered with a "no" were to do with medicine.
Then you have to write, and explain why you answered yes to almost every question in the form, and then add all the documentation from the school, hospital, advisors, council, whatever you have.
Then we took it to our outreach advisor to go over it with us and see that we filled it correctly and wrote everything, and because you have to add a letter from someone who knows and treats the child. Because his parents aren't enough.
To get something between 20 and 40 pounds a week. Who in their right mind thinks that anyone will go through this if they don't really need it?
I get the point of view of the system, I get the need to put all kids on the same level and judge them on the same scale, I get the need to not make it easy for people to trick the system. But I think the truth is it deters the people who needs it and not the people who are heartless enough to claim disability benefits they are not entitled to. Filling forms like this one, or like the Arsenal one is having to beg for help, having to relive the worse parts of your days, having to shout out to whomever will listen "but he is! he really is disabled!". It is hard only when you have a disabled child.
The people at Arsenal Disability Team for example did not think Yon is disabled enough or that we are worthy enough to buy 4 tickets in the front row so Yon could actually see what is going on and not have to sit  in a crowded middle row next to the giant speakers. They sent me to look for teams that aren't doing so well, or wait to next year because they prefer to sell their tickets to real fans. But hey, they have a seeing-eye toilets around the stadium somewhere. Aren't you proud of them?
We eventually got the tickets, because we asked for help from people with more connections than us in the Arsenal headquarters, and we will be going to one of the matches in April. But it is still unthinkable to me that we will have to feel so bad and jump through so many hoops. It kills me that we have to get special treatment, that we have to beg for favours, that once and again we have to prove that Yon really doesn't see. It kills me that we are made to feel like beggars and thieves, like we have to stand and justify once and again Yon's needs and his entitlement to be able to live a full life. In a perfect world, society should help the weak, the Special, the defenceless. It should support and accept the different.
But it doesn't. It makes you fill forms that reduce your child to a burden and you to tears.

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