Tuesday, 5 April 2011

DLA and Despair

Fifteen months ago I massively decreased my hours at work to support J emotionally and psychologically. More and more problems were surfacing at school and I had a child whose self esteem was rock bottom. The decrease in hours coincided with a move to a council property which was all I could afford on my lower income so was very welcome despite being on the local sink estate.

Despite the decreased rent my finances were in dire straits as I was limited once the rent and council tax plus other bills were paid. It was a hard time financially and at times I wondered if I had done the right thing. J was obviously benefitting from having me around much more though and even better I was able to sort out issues which had occurred in school there and then at home time.

In March 2010 James was diagnosed with Autistic Spectrum Disorder, Learning Difficulties, ADHD, Dyspraxia and Hyper mobility. With the diagnosis came a better understanding of J’s quirks and an affirmation that I had made the right decision regarding work hours. I was introduced to a local special needs centre where J could attend a variety of groups to help his social communication skills and my reduced work hours meant I could attend them.

The consultant told me to apply for Disability Living Allowance for J as she said I would need the extra income to pay for attendance at the centre (non-profit making) and extra petrol costs which given the increase in prices has made me realise how true this is. I applied and was relieved to be successful for J – J receives the middle rate care component and lower rate mobility. He doesn’t get a car or a blue badge with these rates and nor does he need them. He is more than capable of walking but requires constant adult supervision outside by roads as he is very distractible, impulsive and still not able to always remember that cars travel on both sides of the road. An instruction to “look both ways before you cross” can still have J looking both ways as instructed but not actually seeing the cars and stepping out. He has on those occasions obeyed the instruction quite literally and “looked both ways” but not made the connection that he needs to wait if cars are coming. Thankfully this IS improving slowly but J is still not reliable and I would fear for him if left to his own devices.

The middle rate care component relates to J’s hyper mobility and dyspraxia which make it hard for him to manage normal everyday tasks which others take for granted. For example using a knife and fork remains a closed book despite input from me and limited input from Occupational Therapy. In addition J needs routine and instruction to manage day to day tasks, dressing himself takes a long time (so I end up often doing it for him on school days), he needs step by step instructions for some tasks, becomes upset with change to his routine and displays much more challenging behaviour when this occurs. Added to this are constipation and withholding (a vicious cycle) and the odd 2.00am bath to settle J when he has stomach ache or has wet the bed (many nights of the week), additional washing, soft cotton clothing which is seamless to stop him feeling irritated under his uniform as well as being aware of certain noises which can upset him and you can see how life can be unsettled but interesting with J.

With DLA came an increase in Tax Credits and for the first time since my hours were dropped I was able to manage financially again without panic and worry. It was a relief which I cannot describe but it made me feel secure. I was able to support J’s physical, mental and emotional needs by working part-time and I was no longer falling behind with bills and that gave me much more peace of mind.

J’s DLA is due for renewal next March 2012 and although I am tempted to write “still autistic” across the top of the form I am guessing in the current climate this will not pass muster.

So – to yhe current time and the plans of this new government for DLA which will see it being halved for children like J with higher functioning autistic spectrum disorder. Along with this cut will be the decrease in the tax credit premium and all in all there will be less money for children like J who need additional support which isn’t always obvious visibly.  J can walk, run, jump albeit fairly clumsily, he can be taken shopping (he is the “odd child” who walks rapidly up and down the aisles clapping, spinning, talking to himself and generally being very autistic). He can go to school with one to one support, he can build Lego and he can play with other children.

What he cannot do is understand social communication, the need to take turns, the fact that sometimes you lose in a game and that other people have feelings when he is in conflict with them. James finds conflict especially hard and his feelings of frustration can manifest themselves in physically hitting other children (thankfully rarely). At home it takes the form of stamping, slamming doors and shouting although this has decreased with work on anger and feelings. This is work I happily do with J and which helps him to see things from the point of view of others. It works especially well when worded as a question such as,  “how did X feel when this or that happened” so that J has to try and put himself in the other person’s skin – not easy for him due to his ASD.

So I am anxious about the plans for DLA – I cannot honestly say that J will be fine without my additional input at present, therefore increasing my hours to increase my income if J is refused DLA or it is massively decreased is not an option presently. Sadly I am thinking ahead to the possibility of a future without work. A colleague at work told me that the Govt needed to look at DLA “because of all the fraud”. When I pointed out that DLA has one of the lowest rates of fraud (just 0.5% of claims) she said that these fraudsters make it bad for everybody. Yes they do but it would make more sense to me to go after these fraudsters rather than plunge people caring for children or adults with a disability into a financial nightmare of anxiety.  I could go on and on about other issues as well, for example those with children who have severe physical disabilities and need continence pads - apparently only 4 nappies/pads a day are allowed regardless of need - something David Cameron promised he would tackle if he was elected.

The Government say that existing claimants will be protected – of course all existing claimants will need to renew their claims at some point at which time the new measures will come into force. But hey – “We’re All In This Together” – right Dave?


Mike Farley said...

Why the Government insist on hitting the low earning, needy people and not the cash-rich-still-helping-themselves total Bankers, Lord only knows why. Probably because most of them are bank rolling the Tories. Great blog as usual. x

Oya's Daughter said...

Right there with you - granted, I get High Rate for sproggo as he's often up at night and moving to High Rate Mobility as there have been problems getting him home or he's attacked people on the taxi and I had to get him.

Keep every piece of documentation you get as there's a huge cocktail there when it comes to care for your child. And get help with the forms as I do wonder if you could get High Rate Care - yes, I know, we "cope" because it's what we do as parents, but it is sometimes worth the reminder from other people that the "now and again" staying up with a child who is up at midnight/2/4am isn't normal and should be considered all a part of things. Sleep deprivation counts as being a higher issue!

Fighting the battle right beside you.

Order and Chaos said...

Thank you both for you comments. I am fortunate in many ways with J as he manages well, however, there are plenty of times when I notice just how different he is to other children of the same age.

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