Not in our name

G has been in receipt of Disability Living Allowance since he was around three years old, he’s now almost twenty two.

There was a bit of a battle in the beginning. We had to get the country’s leading expert on his chromosomal abnormality (“bit missing”) to explain to the DWP that this was a lifelong condition and he wasn’t going to “get better”. This seemed to do the trick and he was awarded the higher rate of care. A bit later he got the mobility bit at the higher rate too. We were told that he was awarded both for life. …I’m not going to try explain how that made us feel at the time… just imagine!

When he was sixteen we were told he would have to be reassessed again. I wasn’t too concerned really and grateful that unlike so many of my friends with disabled kids we hadn’t had to go through this awful experience every two or three years. G was one of those kids you could describe as being pretty obviously disabled, has a known, albeit rare Syndrome, with a fairly clear prognosis… and actually very little had changed over the years, except he’d got physically bigger. For him age really is just a number.

In saying this, filling the form in again when he was sixteen was not nice!

We’d long since accepted G for who he is, love him unconditionally and all that and he ticked most of the boxes – literally! So we knew he wouldn’t be refused and he would meet the criteria, (Christ if he didn’t I had to wonder who would)

I confess to having cried while filling it in – Revisiting somewhere I hadn’t been for a long, long time. However, like lots of other things to do with G over the years this feeling was a temporary blip… I picked myself up, spouted the “par for the course” line to myself and got on with life…other little things like an Education Tribunal, puberty, growing up (or Transition to adulthood) and battling with the NHS to get a suitable wheelchair were also looming at the time…amongst other general life stuff!

Then a bit later some official guy from the DWP turned up to visit us. This was standard procedure (I was told) and it’s to check whether I would need to be his Appointee for benefit purposes (from Mother to Appointee in one swipe of a pen!) I kept G off school for the occasion, having been told that DWP person would like to see him (possibly to confirm I wasn’t making all this up…as if you could!) but during our conversation G remained in the sitting room, watching some age inappropriate TV programme (which actually would have told DWP person everything he needed to know). When I suggested he meet G he said “no need”… (I’m so glad I kept him off school!)

After a reasonably short time the award came through. DLA was again awarded at the higher rate for mobility and care for life… finally the end of all these assessments…or so I thought.

Two years later he then went through another assessment for Incapacity Benefit (two years later than he should have it turned out and missing out on shed loads of money!…no one prints stuff like this in the newspapers do they)

Pretty straight forward again… yep! This kid clearly has issues and is not going to work! Finally they’ve got the message!

Imagine then my disbelief to find out that due to the proposed changes in the benefits system a new benefit will be replacing DLA. All new claimants and all those currently in receipt of DLA will be assessed for the new Personal Independence Payment or PIP.

Now I’m not the cleverest person but even I am struggling to understand why someone like G will have to be reassessed. Don’t they have all the information about him they could ever need! And why do they need it again, so soon after the last time? If it was clear things were not going to change when he was three years old how can they imagine that things have changed now? I know there have been advances in gene therapy and genetics, but really, do me a favour!

Apparently these changes are being implemented with the purpose of saving money, getting people off benefits and getting them into work. The ideology behind it is being presented to the general public as necessary to ensure those severely affected or most disabled (like G) get what they deserve, whilst those less so get less or are taken out of the system altogether. I understand that there are some that fiddle the system, but the numbers are low (0.5%). I’ve read all the arguments, followed comments on Twitter, read the Governments reasons and the articles about “scroungers” “Why should my taxes go to paying for these people” etc etc. (People seem to forget we pay taxes too) but I still fail to see how all these reforms could be better for him…or anyone else.

In my work I meet many families of relatives who may not be deemed as disabled as G but the impact on their lives and their families is enormous. I meet families whose kids are on the wrong rate of DLA and have been for years and others who missed out on years of benefits like we did because no one bothered to tell them they were entitled. Contact a Family reported a few years ago the 62% of disabled children don’t get DLA at all….but no one reports this in the papers either

Raising a disabled child is “no picnic” but we get on with it. We deal with multiple layers of bureaucracy that most people don’t have to and sometimes on a daily basis. It’s often this that makes life so difficult…not our disabled children! With the aim of reducing the bureaucracy the Government appear to be adding another completely unnecessary layer and what seems to have been overlooked is the cost of all this. On top of the cost of reassessing people who clearly don’t need to be, there is the huge cost of changing a whole system and introducing a new benefit.

It would perhaps be easy to sit back, do nothing and say “well I’m alright Jack” my kids going to be okay but, I can’t because these reforms are fundamentally wrong and morally obscene. I object to the arguments being used that these reforms are somehow for the benefit of those most profoundly disabled …they clearly are not, what possible benefit could there be for people like G? (but there are lots of other things you could do if you tried!…but I’ll perhaps leave all that for another rant!)….Oh and just for the record Mr Cameron et al, as a British tax payer I strongly object to my taxes being used in this way!

About Oxfordshire Family Support Network

Oxfordshire Family Support Network (OxFSN) is a not-for-profit organisation run by and for family carers of people with learning disabilities – both children and adults. Oxfordshire Family Support Network (OXFSN) was set up in 2007 by family carers who wanted to use their experience to help others in the same situation, based on our belief that family carers are experts by their lived experience.
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2 Responses to Not in our name

  1. sarasiobhan says:

    Great post capturing the outrageousness of the system. It’s just wrong and needs shouting about.

  2. Frannie says:

    So true summerises the system perfectly.You have been living in my home,
    I have just had the visit for my 16 year old from DWP and asked the question why they needed to see my son, would it not be more cost effective to send a form to school?, they have known my boy for 14 years and could confirm that academically (not a term I usually have to use when talking about him) at P levels he would not be able to manage his own affaris, to my astonishment the response was school some times get it wrong!
    Fortunately I did not keep him off school forwarned by friends that it was a two minute job, I live very close to school and obviously did not want to be an irresponsible parent and keep him off for no good reson, not to mention the respite you get from a school day, so we went to the school to see him, school kindly arranged a quiet slot for the assessment, the DWP representative introduced herself to my boy, he politely replied yes/no/ I see, not having a clue about what was said, and yes I had tried to explain to him a stranger was visiting him to have a chat with.
    this took a total time on school premesis of two minutes thankyou goodbye!
    Damming on several levels what does this say about our schools if they cannot assess in 14 years someting that a stranger did in two minutes?
    No information was given to me, I suggested that it would be a key oppurtunity to remind parents about benefits their child may be entitled to at 16 for example ESA, as many parents are still unaware of entitlement changes at 16, bogged down by paperwork and fighting for their childrens rights and support needs, my DWP representative did not deal with or know about this benefit, but a leaflet or direction to the information would surely be possible.
    Finally on direction I explained the best way to leave Oxford to do the 40 miles back to Milton Keynes despite not being a Route master…took about 2 minutes of my time but I did not get paid for that!

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