Back in March of 2011, following various discussions on the forums, I decided to download the Disability Living Allowance (DLA) form from the government website. As you can read in an earlier post (Should I apply for DLA?), there was initially a lot of umming and arhing over whether we should apply, but once I thought about all the extra money we spend on washes, the need for a car (especially during the hot weather) etc I bit the bullet and started filling it in.
If you’ve ever looked at a DLA form you will see they are not made for ease; it was 49 pages long, 42 parts that had questions split into ‘a’ and ‘b’ or more and you could download a booklet (yes a booklet!) from Cerebra which contained 64 pages of support and advise on how to fill in the form and what details to put in your answers.
Even with the Cerebra booklet, I wasn’t sure how I was supposed to work it all out or what I was supposed to put. For example: Part 8 – one of the questions was ‘How many days a week does the child need someone with them?, How much of the day do they need someone with them? and Tell us roughly how long they need someone with them each time during the day?’. Now I knew that supervision was required 7 days a week but how much of the day did our son need someone with him? MY response – ‘on and off during the day; I or someone needs to be close by or backwards and forwards checking up and making sure he hasn’t wee’d etc, wrapped a wire around his neck or eaten his way through the sofa! How do you work that out? What about when he’s at school? Then theres how many minutes?’
It was all getting too much. Most people get very disheartened and upset filling in these forms due to the amount of information that is required and how much you have to highlight of your childs disabilities, all the things that you hoped you could wish away. You can’t look at anything positive or you risk losing a fighting battle and that’s what you do, day in and day out. Fight!
Some parents put 720 minutes each day (day time multiplied by 60 minutes) as the night-time is covered under a separate question (yes, there are many questions to each part and within a question its split as detailed above!) and others ‘all the time’ or ‘constantly’. I was getting confused because I didn’t class it as being directly with him for that time but popping in and out. I suppose if I look at it, I’m still with him and I have to check up on him so often that leaving him to his own devices is not really an option.
I’d been filling in the form on and off for about a month but it was taking so long; I was getting tired and fed up, feeling lonely (even with my husband downstairs) and in need of a break. So I took a month!
I started to look at the form again in the middle of May and then took another month gap while I concentrated on applying for our sons Statement of Education. It was taking so long, I kept putting it on the back burner for kids, work, kids, work/course… It was just too long, too detailed and becoming a real struggle to complete. I decided enough was enough and I needed something to push me forward, to get me to finish it. I decided to phone and ask for the DLA pack so that it got back-dated to the request date, but also had to be completed within 6 weeks of the request date stamped on the front of the form.
I was being offered tons of wonderful advice and just having people there to hold my hand, even if it was over the internet, was brilliant. People kept telling me to get support from charities who help you fill in the forms but I was unable to ask. I was stubborn! A control freak who didn’t want anyone else doing it. I told people ‘I’ll ask SENCO/Teacher what they think on things I’ve written’ which I didn’t, I wouldn’t let someone else deal with the paperwork that was directly for me to complete. You might think that’s silly, but I just wanted to make sure everything I wanted to say, was in there and in my words. Even now, I can’t/won’t let people help other than offer advise.
By the 16th June 2011, I had managed to phone up for the pack and got it back dated. I was concerned I was filling in the questions wrong; it was taking me at least an hour per question and it got to the point where forum friends were telling me to take a break. My brain was well and truly fried, I was on auto-pilot and I needed some ‘me’ time.
Our son was in the transition of schools too but I managed to get his old SENCO to fill in the third party bit on the last day of term. Where it said ‘what school does he attend’ I put a date one finished and the other started.
Whilst phoning up for that copy forced me to complete it, it just added that bit more pressure but was worth it. Once I was half way through, it started duplicating on questions but breaking them down more, so I end up freely typing drivel I’d already said about 60 times earlier in the form, it started to get very tedious.
Towards the end of July 2011 I finished the DLA form and posted it Special Delivery to make sure it arrived by the return stamped date. to make sure I’d finished it, I’d been doing it for 12 and half hours straight with a 20 minute break for dinner and that was from part nine. I hoped that our son got what he deserved after all the hard work – I’d even pulled out of a Residential course I was supposed to be on, to make sure I got that and other Statementing paperwork completed.
A week after posting a decision was made and our son was awarded – Higher Rate Care with Lower Mobility – we were extremely happy and I was able to breathe – even if only temporarily whilst still in the fight for a statement. All that hard work paid off, so to speak.
I took a couple of weeks reading, getting away from the forms but then had to get back to the grindstone; I had a 15 page OT questionnaire to complete for him before he started his Therapeutic Listening