DISABILITY LIVING ALLOWANCE: A DAY AT THE TRIBUNAL

I may have told you in past entries that we get Disability Living Allowance (DLA) for Noah. Last September some "Decision Maker" (yes - that's what they are called, honestly) in the Disability Living Allowance office decided that we were no longer entitled to the allowance, as we had been able to take Noah on holiday so he couldn't be that bad!! The requirements for DLA mean you have to meet certain criteria - and up until we went on holiday we did.

Anyway to cut a long (7 months to be exact) story short, we went to the DLA tribunal last week to appeal against their decision and to present further evidence which we hoped would satisfy the criteria. There are three levels of DLA - low rate, middle rate and high rate. We were getting the middle rate for Noah and all we wanted was to get this re-instated.

There were three people on the panel, we'll call them The Enemy for now: a rather stern Scottish GP, a posh granny with a blue-rinse and twin-set and a jolly-faced chairperson who seemed to agree (if nodding his head and smiling meant agreeing!) with my every point. I later realised to my horror that he had a tic and was known to smile when he least agreed with the point in question!!

I should have known our case was doomed when the blue-rinsed granny enquired as to whether I had ever tried simply asking Noah to get out of bed before he had his tablets! Buzz kicked me under the highly polished table which separated us from The Enemy - he could obviously sense the incredulity mounting in my body language and high-pitched tone.... "Ask him! - Have I tried Just Asking Him? Youreallyshouldcomeand payusavisitat6:45onaTuesdaymorning......." I began without pausing for breath. Buzz, sensing a crisis coming on (you get good at that as the parent of an ADHD child, you know), cleared his throat and in a calm quiet voice said "Yes we did try, several years ago, but when you have had missiles and verbal abuse hurled at you from a great height you tend to take it as a negative response, wouldn't you agree?" "Quite," she muttered in a rather disbelieving way.

That's the trouble you see: often people just can't believe how these children behave - sometimes we can't believe it ourselves, it almost sounds too incredible to be true. Take The Window Box Episode - even as I was telling our consultant the tale I could see the look of "We'll humour her but she must be exaggerating...............surely?" After a fruitless search for Noah several years ago, we eventually found him sitting in the newly screwed-on window box outside our bedroom playing with his Duplo - completely unabashed and quite comfortable amongst the trailing fuchsia and mixed lobelia. He had no fear you see - heights meant nothing to him, a busy road was a challenge and a parent rising to the bait - that, well that was just another form of entertainment!

I digress - The Enemy were asking increasingly exasperating questions; they obviously had no idea what it is like to live with a 12 year old with ADHD, who doesn't sleep much and who regards his 6 year-old sister simply as an alternative form of entertainment. I think they could sense my exasperation as at one point they asked if I would like to explain in my own words what a typical day was like - I did ask them how long they had but I could sense I was losing them after three minutes and I had only got up to breakfast time!!

Well, we did get our DLA - they give you an answer after waiting an agonising 10 minutes outside the room. I am convinced that they make you do this and then bring in all sorts of injured and unfortunate people just to make you feel guilty and rush sheepishly back into the room saying it had been a mistake and you really didn't need DLA after all. There was a lady with her leg in a splint sort of thing and a guy with some sort of speech difficulty. I must admit I did ponder on our own circumstances for a minute or two - it sort of put things into perspective in a way. Ten minutes later we had our answer - yes they would re-instate our DLA but at the lower rate. Well - at least we had a sort of victory - a hollow one in a way. We intend to re-apply as should every parent of a child with ADHD. If you have a child with a disability, the allowance is calculated from the day you ring the Disability Helpline and ask for the forms to claim DLA - it is backdated so even if it takes many months for them to make a decision it is still worth claiming as soon as possible.

There are lots of criteria attached to the Allowance and the forms I am convinced are designed to put you off - it takes several days to complete them. There are solicitors who can help with aspects of claiming DLA but if the panel thinks you are using too much jargon to get the allowance they may refuse it. Sensitive lot they are - when they wrote to Noah's consultant they wrote to the wrong doctor who of course knew little or nothing about him, just completed the forms in a cursory fashion and sent them off, little realising what a damning effect this would have on our application. The fact that I wrote to the doctor asking them to re-visit the case notes and make sure they had the correct child was mentioned in the DLA "Decision Maker's" reasons for refusing our claim. They said I had "apparently contacted the doctor and asked them to change what they had written" - now how bad does that sound?

Well, we ADHD parents are not known for our tenaciousness for nothing you know - we are well used to having to advocate and fight for our children every step of the way. It is exhausting and does wear you down at times but then you sit back and look at what you have achieved - look in your son's dancing, blue inquisitive eyes and you know that you have to continue - for him.

That's all for this week - I'd really love to hear from other parents with ADHD children. There are lots of parents with ADHD out there too, so do get in touch - it gets lonely in here!!

Until next time,

Jan