I Fought The DWP And I Won

DLA is a non-means-tested benefit awarded to children with disability based on their physical care needs. There are two parts - care element, which is awarded according to high (24 hour), medium (all-day) and lower (intermittent) care needs, and mobility, which is awarded according to either high (cannot mobilise) or low (cannot safely mobilise) mobility needs. These needs are compared to those of the normal age cohort - so you wouldn't expect a two year old to be able to wash their own hair, but you would expect a twelve year old to be able to. You would expect a six year old to be able to go to sleep on their own and sleep through, but not a six month old.

Last year, Jimmy was awarded high level care and low level mobility for two years duration. This was because, in addition to his daily care needs, he was waking up repeatedly in the night and needing supervision to be safe and get back to sleep, and because he can't safely go anywhere on his own because of his sensory and communication issues. 

In October, I was sent a new form in order to apply for a renewal before his old award ran out in February. I filled the form out, I asked the school to write me a letter to send in with it to pre-empt them asking the school for more information, I attached all the hospital letters we have (albeit, no new ones since his last application since he was waiting for his autism assessment) and I sent it off.

Filling out a DLA form for your disabled child is fucking hard work. The only way to get through life as an autism parent (indeed for any parent of a disabled child) is to focus on the positives. So that's what I do. Yay, Jim has finally started sleeping in his own bed, he's sort of making friends, he's not been in trouble at school for a week, he can READ!, he doesn't hurt himself so much. 

But when you write the DLA form, you have to focus on what they CANNOT do. He can't safely walk down the road on his own. He needs 24 hour supervision to stop him hurting himself or (more likely) others. He isn't generally aware of other people. He won't get dressed for school without help. He won't brush his teeth without help because he hates the tingle of toothpaste. If he wakes up in the night, we ALL wake up in the night.
The DLA form is not read by a medical professional, who might understand the condition you're describing. Instead, it's read by an administrator who has a handbook of useful phrases to help categorise your application. Now, I used to be a clinical administrator and you learn a hell of a lot about care needs and medical conditions when you read about them nonstop, so I don't think that's inherently a bad idea. Well, I didn't until I sent the DLA form off.

Within five days of them receiving it (compared to the four months it took the initial claim to be sorted), they had written to me not just not renewing his DLA but stopping it completely, effective immediately, three months before it should have been. 

I phoned them, confused. After all, his needs have changed a little since originally applying, but not to the point where he's entirely able and normal. Autism doesn't get cured overnight. They said someone would phone me back within two days. 

Astonishingly, they phoned back on the same day and I spoke to a pleasant woman who told me the reason his claim had been rejected was because he hadn't been seen by a doctor in almost two years, ergo there's clearly nothing wrong with him. (The exact wording was "No hospital evidence to support intermittent behavioural problems" - INTERMITTENT?) I don't think they even read the form, since I had written on the form that he was awaiting assessment, his appointment date (received the day before I sent it in) and included a recent letter from the neurodevelopment team stating he was on the waiting list for a full assessment. 

Pleasant Woman was very pleasant about it. I explained that he needs full adult supervision, self harms, hurts other people, and has no road sense (all important parts of the needing-care element of DLA) and that his autism assessment appointment was THE NEXT DAY. She said that I would need to submit the written verdict of the autism assessment as soon as we received it and they would reinstate and backdate his claim based on that. 

I have real issues with this. You see, I get that care needs can be transitory, and that a long absence of hospital information could mean someone is trying to get substantial money they don't need. I understand that all non-means-tested benefits are open to being abused, because bitches love money and they're less financially scrutinised that means-tested ones. 

But DLA is not supposed to be awarded based on a diagnosis: it is supposed to be based on real time care needs (as the DWP told me, patronisingly, in their own appeal paperwork).

The enormous gap in time between referral and diagnosis for autism patients is a known issue, and as CAMHS and the school keep arguing amongst themselves, diagnosis doesn't make any fucking difference to the daily life of the child. They were autistic before, they are autistic after. A diagnosis is not a doorway to treatment and cure, it's just a label that is useful for getting more help, and many children with well-managed autism don't see clinicians for years at a time.
We use Jimmy's DLA money to fund educational resources to keep him up to date during school holidays and to broaden and personalise his learning. We use it for holidays themselves; for days out, and for the various sensory toys and tools we use to keep him happy and calm. It also takes the financial strain off us, which when you're fairly poor anyway is the difference between autism being part of life, and autism being too much to cope with.
I had to phone them to find out why his claim had been stopped - they don't tell you in the letter - because I knew based on the information I'd given them, it was a bad decision. Imagine how many parents DON'T QUESTION IT because they don't think there's any point, or they're scared to question it and be scrutinised, or they think it's set in stone. When I wrote about this on social media, friends who work in social work and medical fields said it now seems normal for claims to be rejected, and require appeal for reinstatement. I'm not sure whether this is a bid to cut the benefits bill or if that's just cynicism. I did make a FOI request to try and find out how many DLA claims were declined, and how many of those were appealed successful, but apparently this is information the DWP simply do not have to hand. My arse.

After a week, I got another letter. My request for reconsideration had been denied. They detailed why, and to be honest, it was a load of bollocks. He had his mobility stopped because his care needs outside were the same as any six year old. When was the last time you saw a six year old run off because of a horn, stop dead, walk into people, lie facedown on the floor because of a dog, in the street?
He had his care allowance stopped because
1. He hadn't been to the doctors in two years
2. A letter from school said he was a pleasant child who struggled with transitions

Now, as mentioned, he hadn't been to the doctors in two years because they told me there was nothing they could do until he had an autism assessment. He needs occupational therapy to cope with noises? Nope, needs the ADOS. He's biting himself because he's so anxious? Nope, ADOS first. I literally don't know what to do anymore, help me? Wait for ADOS. Three separate times I phoned the hospital asking for help, over the course of a year, and three separate times they told me to wait. So, what would be the point in going to the doctors?
Then the letter from school. In the week I received the decision on reconsideration, I had been called in by the teacher because Jimmy had kicked a chair into a teacher and he'd ripped a display off the wall. Schools always want to believe the best in children, and have been open about not really believing Jimmy has autism. When they say he struggles with transitions, they mean he has a loud meltdown everytime it's time to change activity or move to another area. He's better at school than home, because of the routine, but he's still unsafe and difficult.

So, how to appeal this decision? The letter said I would need to go to justice.go.uk/tribunal and download a form to send off for appeal. So I went to the link, and found nothing useful. I had to search the government's site for ages before finding the correct form, and downloading it.
I filled out the appeal form as concisely as possible, and asked the school to write another letter describing his more negative behaviour. I had a diagnosis by then, so I could include the psychologist report as extra information. This, I should add, was the day before the end of Christmas term and I had one calendar month to get the appeal submitted. Stress central.

I got the appeal submitted. I then waited. After a month, I received a huge sheaf of paperwork from the DLA. And dear reader, in my vexation, I didn't read it properly. I read the first two paragraphs of the covering letter (which said it explained the decision), then read the first few pages of the paperwork (declining his DLA) and assumed the tribunal had ruled against us. I cried. I sobbed. I worried. I stressed. I drank. Six hours later, I read the letter properly and found that actually, it was just the Dept of Work and Pensions' response to the appeal, and the case prepared to send to court. Erm. Oops.

So. Let me preface their reasons with a note about the ADOS assessment. It is one 45 minute, constantly guided play session, used to grade behaviour on the autistic spectrum. It cannot be used as a diagnostic tool in it's own right, hence the FOUR HOUR ADI-R that followed a week later.  Jimmy scored highly on his ADOS in terms of communication and reciprocation, but lower on the restrictive and repetitive stereotypies element that is characteristic of autism. Jimmy has a strong history of stereotypies, repetition and restrictive behaviour WHEN HE IS ANXIOUS: when he's happy, he doesn't demonstrate them so much. Aside from to talk constantly about food, to stuff his face all the time, and to chew himself up in lieu of food. And anxiety tends to be triggered by doing anything unpredictable, like go outside, go to someone's house, go out for the day, etc.

With that in mind, and being aware that I repeatedly referred to these elements in all the letters I sent them, here are the DWP's official reasons for not awarding DLA:

1. Autism does not mean an automatic right to DLA. 
Well, I never said it did. I did say that he's autistic and his lack of hospital appointments in the last two years doesn't mean he's magically cured, but that's not the same as demanding DLA because he's been diagnosed.

2. Jim stops in the middle of the road and has no road sense and that's totally fine because his ADOS demonstrates he has no 'temporary paralysis of will' (their words)
No, I have no idea how they made that leap either.

3. Jim needs guidance when out and about and, because he didn't show any evidence of stereotypies in his ADOS, that's fine.
No, seriously DWP, how do you make this leap? What do stereotypies have to do with the constant unpredictability of going out?

4. Jimmy doesn't need enough help during the day to qualify for the care rates because he didn't demonstrate any self harming behaviour in his ADOS appointment. Although he needs some help at school, he is also a nice child and thus does not need substantially more help than a normal child of his age. 
However, his ADI refers constantly to his patterns of self harm and injuring other people. But apparently, that doesn't count because HE WAS FINE IN HIS ADOS! The amended letter from the school also states that he now has a one to one TA all day, but that's TOTALLY NORMAL AND THE SAME AS OTHER CHILDREN. As is requiring sensory circuit therapy every day. Totally standard.

5. Jimmy is not at risk of sufficient danger during the day/night to require constant adult supervision because his ADOS doesn't demonstrate any self harming or repetitive behaviours. 
No really. That's it. That's their whole reason.

And so...we waited.

After a couple of weeks, I received a letter from the Tribunal service telling me what date our case would be heard and that if I didn't attend, it would be decided without me. I was a bit surprised, since by this point I had told the court twice that I wanted the case decided on the paper evidence, so I emailed them for confirmation. They rang me a few hours later and explained the DWP had requested an oral hearing, although they don't often turn up, and I didn't have to go but I could submit more evidence in writing as long as I got it in a week before the court date.

I can only assume the DWP do this to bully people. Honestly, it is BAD ENOUGH doing this as the able parent of a disabled child; I cannot imagine how shit it must be if you are claiming for yourself. I felt like I was on trial for the whole of this case, like I had done something terrible rather than try and get my son's disability money reinstated.
So I wrote a long essay based around the points listed above, but more academic, better referenced, and with less sarcasm, to submit as my final statement on this case. And the waiting recommenced. A lot of lovely people offered to help me go to court, and encouraged me to go, but I couldn't. By this point, it had built up in my head to a terrible demon that I would rather not face. After all, if I didn't go, I couldn't fuck it up and be blamed for any bad outcome.

When the tribunal date came round, I just kept myself busy, constantly aware of the time, and then came down with a terrible virus that stopped me thinking about anything for three days. Which just so happened to be the same amount of time it took the court's decision to be sent to us. I got my husband to read it; I couldn't bear to look.

We won.

Jimmy's lower rate mobility has been reinstated from the date it was stopped, for the next three years. His care rate has been reinstated at the highest level up until February (when it was due for review anyway) and now reduced to medium level for the next three years. It means we have to potentially go through all this again in another three years, but for now, we are done.

The relief is beyond compare. The vindication. The feeling of pure, righteous joy. This was a few days back now, and I am still elated. The court judgement is rather plain, but does say that the DWP didn't attend the hearing it demanded, and the case could have been (and was) determined by the paperwork alone. I wonder why the DWP decided to waste taxpayers money in such a way? Is it really just an intimidation technique? If it is, it's genuinely a worrying tactic. Nobody claims disability benefits for a laugh and a doss, not in the current political climate of LOATHING THE DISABLED, so to target and bully vulnerable children , at the taxpayers expense, seems extraordinarily underhand.

But we won. WE WON! I don't need to write any more 3000 word essays on what Jimmy cannot do and why. I don't need to rail at friends, family and passers-by about how fucking crap the DWP are at legal reasoning. I don't need to sit during every meltdown thinking "well, if the DWP could see you, maybe they'd believe me". I don't have Jimmy screaming he will KILL the government for taking his special money, after I explained that's why he couldn't have a tablet for his birthday. I don't need to doubt my own ability to reason, or whether I'm qualified to actually DO this because I'm a sociologist by trade, not a bloody lawyer. No financial decisions need to be held off, or just abandoned, because of waiting. We can live again. For four months, I've been holding my breath, flinching at every brown A5 envelope that's come through the door with (Appointee) after my name in the address line, worrying, being furious, feeling like a fraud, feeling fucking hard done by, feeling aggrieved on behalf of Jim and every other family that's been through this.

It's done. Until next time.