DLA Review Stress Over – For Now

As many will know, we are in receipt of DLA for Matthew thanks to his autism spectrum disorder. He was awarded higher care, lower mobility in 2010, but for just 3 years. We got the form a few weeks ago to have his claim reviewed (https://theworldofneil.wordpress.com/2013/06/10/asd-boys-dla-claim-review-time/), and it has been a stressful time. Matthew’s DLA has made a difference in that Jane can be at home for him 24/7 if he needs it – which he often does. The prospect of losing it was a frightening one, even though we knew Matthew’s condition had worsened.

The review claim form and additional information sheets ran to over 7,000 words, included school reports, his IEP and a diagnosis report from a clinical psychologist. We’d laid bare the difficulties we face with Matthew during the day, and particularly at night where he can be a real handful. Even though with all that information and evidence there were still doubts over whether or not the claim would be renewed – considering the DWP’s recent track record of refusing seemingly legitimate claims.

We posted the form on 12th June. We then received a letter from the DWP on 20 June saying they’d received the form on 14 June (not bad, only a week to acknowledge!) – thanks to the vagaries of their mailing procedures and the post, we got the letter on 26 June. Big worry was that if they needed information from the school (we’d put in M’s reports for the last 3 years) they were running out of time, as Scottish schools broke up on 5 July. But, considering the turnaround for Daniel’s claim last year, it was on track. We then got a letter on 5 July to say they were dealing with the claim and that if they needed any more information, we’d be contacted. Cue some more stress! It was in the system! We went off on holiday ( https://theworldofneil.wordpress.com/2013/07/16/haven-heaven/) with the claim being unresolved. Still, I put it to the back of my mind – I wasn’t going to let the DWP affect our holiday!

Of course, there was a pile of mail when we got home on Monday evening. And there it was, a letter from the DWP. I tore it open, just wanting to put myself out of my misery. The letter was dated 2 July, so would have arrived the previous Monday. I quick scan on the first page told me the news I’d been waiting for. Matthew’s claim was being continued. He was still entitled to higher rate care & lower rate mobility, and it had been awarded for another 5 years from October 2013. It was a huge relief. It meant that the near future would be settled financially and that we could keep moving Matthew forward. Dealing with a disabled child is difficult, and it presents challenges that parents of neuro typical children may never consider. It has meant sacrifices for us but we’re now able to move forward.

For all their many faults, the DWP pushed the claim through quickly, although it was as a result of us being very thorough with the claim, providing them with all the information they needed. Claim is due for review in 2018, but that’s a long way away at the moment. Right now, we’re feeling positive again.

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Autism – Hidden Disability and DLA

Since the current government came to power, there’s been a relentless onslaught facing the disabled. To most, the word “disabled” is just for those with obvious physical limitations. But that’s just part of the full story. Many people have hidden disabilities, including of course, Autistic Spectrum Disorders. They would take one look at anyone with autism and ask, “what’s wrong with them then? They’re faking it” It might be hidden, but it’s real and affects lives in ways people can’t understand.

In 2010, Matthew was diagnosed with an Autism Spectrum Disorder. We went through the tortuous process of claiming DLA for him (
https://theworldofneil.wordpress.com/2013/02/25/claiming-dla-for-a-child-with-autism/) – the process is long and difficult (what can’t your child do?) but with the help of our Health Visitor and the brilliant resources on the National Autistic Society website (http://www.autism.org.uk/living-with-autism/benefits-and-community-care/disability-living-allowance/dla-tips-for-parents-and-carers.aspx) we got through the process, and had DLA awarded for Matthew.

However, despite it being a lifelong condition, Matthew was only awarded DLA up to his 8th birthday, which means his claim is up for review this year, and I’m dreading it. I know Matthew hasn’t changed for the better – if anything, he has gotten worse. His verbal and physical aggression is escalating, and he’s getting into trouble at school for the first time because of it. He has physically attacked other children at school (resulting in him being moved to another class) and he has greater difficulty observing personal space, understanding friendships and negotiating the playground. He also has difficulty focussing on eating unless he’s directly supervised so he will eat. Its gotten to a stage (again) where on days when he doesn’t have a supervised lunchtime activity (that’s 3 days a week) we’re having to take him home at lunchtimes to a) ensure he eats (on most days, most of his lunch would come home uneaten) and b) he’s not exposed to the chaos of the playground at lunchtime. He’s so vulnerable and his view of friendship is dangerous. If names are exchanged, he is friends with someone. He doesn’t realise how dangerous that can be. Would he go off with older boys/girls if he exchanged names? I think he might – with potentially disastrous consequences.

Then there’s Matthew at home. As I said, he is much more aggressive both verbally and physically. He can be quite abusive to Daniel in particular, but won’t stop there. He is much more prone to physical violence that before, and has taken to hitting Daniel outside of the house (yesterday he hit Daniel so hard in the chest in the school playground, that Jane thought Daniel might be sick) – and that wont just be with his fists and feet. Anything at hand can be used to belt (usually) Daniel. Mealtimes can be hazardous in that respect. Quite a number of times he has thrust a knife in Jane’s face. He can be a real danger both to himself, and to those around him.

Basically, Matthew still needs direct supervision on a constant basis. Its impossible to leave him in a room with Daniel, as you know within minutes (seconds quite often) he will be at Daniel verbally and physically. As Daniel gets bigger, it will involve retaliation, and there’s more and more chance that one or both of them will be seriously hurt. Night time isn’t showing any signs of improving either. Matthew’s night terrors are still with him, and although he will settle down reasonably well (having said that, he still needs one of us to be with him until he drops off to sleep) he can be back out of bed anytime from 10pm – 5am. That’s usually accompanied by screaming that comes with night terrors. Jane & I need to get him out of bed before he wakes Daniel, but its our sleep being disrupted (I doubt we’ve have more than a handful of full night’s sleep in the last 5 years.) Matthew can take up to an hour to calm down to the point where he’s ready to go back to sleep. Then there’s the fight to get him to go to the toilet in the night. He won’t go unless he’s made to – we need to take him and make sure he goes. Any parents of a neuro-typical seven year old need to do that?

All of these behaviours are hidden to most people, but we are having to deal with them almost daily. Matthew is also increasingly unpredictable, and that makes his behaviour all the harder to deal with. Its not a case of know when are the hotspots during the day are so you can prepare for them, or know when you can let your guard down. Its all of the time you need to be prepared, whatever time of the day it is. That’s when I think about his DLA review, and all the things we have to do, all the coping strategies we need, all the extra supervision he needs to get him through each day. Mental health issues are hidden disabilities that can affect the lives of the people who suffer from them, but they also affect the lives of those around them. I’m dreading the review, but we won’t be keeping Matthew’s disability hidden. But who can tell if the DWP will see it that way?

The misconception about DLA.

Another government minister talks, another government minister lies. This time its the turn of Esther McVey with another government attack on the disabled. Iain Duncan Smith has already told lies on the level of DLA fraud – its less than 1%, which is made up for by many legitimate claimants not submitting a claim. McVey though says DLA is “given away” with 50% of claims awarded on the claim form alone. I think she needs to have a wander down to the DWP who would tell her only 16% of claims are decided on the form alone. The 16% would account for those so severely disabled they need caseworkers to complete forms on their behalf. Its a bare-faced lie to suggest half of claimants are being awarded DLA on the back of the claim only.

In my experience with Matthew, before we were awarded DLA on his behalf first of all we had to go through his GP. This happened in September of 2008. The GP listened to our concerns and on the strength of the behavioural traits exhibited by Matthew, he was referred to Community Health. After a few months of waiting, we saw Community Health (early 2009) who assessed Matthew with Jane and by himself over three appointments. The consultant there then thought she’d seen enough to recommend he be assessed at the Raeden Centre in Aberdeen, a special needs nursery where he would see speech therapists, psychologists and consultants. At the end of a 5-day assessment we had a multi agency meeting with all involved that decided Matthew would be passed onto one of the clinical psychologists at the children’s hospital in Aberdeen.

What followed was a string of appointments where Matthew was assessed again against various criteria. Matthew was seen with Jane, alone, at play. It was a long process and finally when he turned four, the psychologist could test Matthew using ASD diagnostic tools. With those and another session, she was able to diagnose Matthew with an ASD. That was in January 2010, 16 months after we first went to our GP.

Our Health Visitor advised us to claim for DLA. We reviewed the National Autistic Society’s website for guidance on claiming for DLA (
http://www.autism.org.uk/living-with-autism/benefits-and-community-care/disability-living-allowance.aspx) which was invaluable. What then followed was a gruelling process of completing the claim. We recorded as much detail as we could, which ended with the claim running to 10,000 words. In addition, the DWP needed a report from the school (who asked “Why do you need the money?” – cheeky buggers) and of course a full report form the clinical psychologist. Thankfully, she was more than helpful and ready to support us with the claim.

Finally in April 2010, we received an award letter giving Matthew higher rate care (he’s a nightmare at night) – we would have to claim again when he was five for mobility for which he was awarded lower mobility. So, in the course of 16 months we saw a GP, 2 consultants, speech therapist, clinical psychologist, completed a 10,000 word claim, had to submit reports from the psychologist and school before we were awarded a penny. If Esther McVey thinks its just handed out, its her that’s living in cloud cuckoo land.

DLA – My Experience Claiming for a Child with Autism.

Its highly topical at the moment. The welfare system is being reformed, and by reformed I mean its being made harder for legitimate claimants to claim for benefits. There’s a misconception that all you need to put your hand out, and you are quids in! I’m fairly sure that anyone with that view obviously hasn’t had to claim for anything at all.

My tale begins with our son being diagnosed with an Autistic Spectrum Disorder. The thought on claiming for anything hadn’t even occurred to us. It was hard enough to take in the fact that we’d been landed with this bombshell. Fortunately for us our Health Visitor – kept in the loop thanks to details of Matthew’s case being passed onto his GP – was on the ball. She came round to see Matthew and asked if we were claiming Disability Living Allowance. As I say, the idea hadn’t even occurred. Going off on a tangent, how many other parents suddenly becoming the parent of a child with a very special need don’t even think on claiming for something to which they would most likely be entitled to?

Our Health Visitor gave us great advice on the sort of things to included in the claim. Lots of the advice related to things we hadn’t had the chance to think about. Simple things like taking a bus. How would Matthew cope if, for example, a bus that wasn’t ours went past the stop without stopping? It would almost certainly result in a tantrum. The National Autistic Society website was a fantastic resource. I’d gathered all the advice I needed, requested a claim form from the DWP. Now it was time to make a claim!

To make sure I got everything down, I decided to draft each section in word so I could put in all my additional comments as supplementary sheets. The advice of the NAS was to be as detailed as possible. If anyone is in a similar position, don’t tell them about what an “average” day is like with your autistic child. Think about what its like when it’s as bad as it can get. Don’t say he/she can manage round a supermarket. Tell them you have to consider leaving your child at home because you can’t bear the stress that going down the frozen aisle, your little one may go into meltdown and lay screaming and kicking on the floor while you have to stand and endure the stares of other shoppers. Think of what its like when your child wakes in the night in terror, waking up the entire house at 3am with their screaming. Think of what its like to take almost an hour to get them dressed each and every day. Just think of how drained and exhausted you are every day trying to cope with an autistic child. Just remember, parents of “normal” children don’t have these problems.

If anyone making a claim for their disabled child think it’s just a case of saying “He’s autistic, can I have DLA now?” drop that idea at the outset. It’s a draining and time-consuming process. We all need to focus on the positives for our child. Yes, they are autistic, but what can they do? What do they achieve? None of that when claiming DLA. The constant focus is on the negative. Page after page is all about what your child can’t do. They can’t dress themselves, they need constant supervision in the bathroom, they need help eating.

The detail needed, whilst perhaps in someway understandable, but seriously, asking how many minutes it takes to wash, how long they are disturbed for at night. It goes on and on. You just have to compartmentalise your child’s life and think clearly what a difference having an autistic child makes to your life. As I say, and autistic child isn’t a “normal” child. It’s surprising how much extra time you take with everyday activities. Try cooking a meal whilst trying to supervise an autistic four-year old who’s a danger to himself and see how long it takes.

Ultimately in took about a week to make sure I’d got it right, and had it detailed sufficiently. The submission from me alone ran to 10,000 words. That wasn’t the end of it though. After the claim had been submitted, the DWP needed a school report. We decided to speak to the nursery teacher, as we’d had no report of them struggling with Matthew. I didn’t see the point of the school report considering he was at home 21.5 hours out of every day. The problems were all ours. Astonishingly his teacher asked what we wanted to the money for! Honestly, I think that’s our business. But then again, most don’t realise DLA is to enable claimants to live as independently as possible. It has allowed us to make sure Matthew’s mum can stay at home and give Matthew the care and supervision he so badly needs. To many, it’s a god-send.

Ultimately we got a call from the DWP to say we’d been awarded higher rate care component. The only disappointment was that the claim period was for 1 year. A call to the DWP to try to ascertain if this was normal for a child yielded nothing. The NAS did think that it might be that they couldn’t assess a mobility component until Matthew was five. In July last year we were advised to submit yet another claim to the DWP. Incredibly we had to do it all over again within a year of the original claim. Fortunately nothing had changed for Matthew. If anything were we discovering more things he couldn’t do. We took the Health Visitor’s advice on the mobility side. Getting Matthew from A to B regularly involves going via C, D and E! Despite the claim not being officially due for review until September, the DWP called in August to say Matthew was getting higher rate care and lower rate mobility until October 2013.

Things have changed since then and his review will be dreaded and will be highly stressful. But, somehow we negotiated a claim process designed to deter claimants, and had come out the other side with the chance of giving Matthew the help he so badly needs.