The fabric of Britain as we know it is being ripped apart. So much is changing, almost behind our backs, we haven't got time to notice what is happening to us. And it is happening fast.

Tuesday, 13 December 2011

Does Every Disabled Child Matter?

Every Disabled Child Matters is asking that you email David Cameron to ask that the government rethink its decision to cut disability premiums awarded to families with disabled children.  This campaign is supported by Mumsnet.

I would also like to ask you to do this too.  For me, for my family and for the other thousands of families out there who will suffer real financial hardship if these reforms are allowed to go through.

The House of Lords voted these cuts through last night, so please spare a couple of minutes to do this.

It's not anything you have to word yourself, simply provide your details and it is done for you.  It takes no more than a couple of minutes.  Although if you do then please check your email after as no 10 will email you and if you don't click the link it won't go through.

Yesterday The Indpendent ran this article using my family to illustrate how the cumulative effects of cuts are going to affect families.  Whilst a good article it doesn't mention that the riding isn't just to calm my son, it's also to exercise his legs and trunk to try and help because physiotherapy resources are so scarce, it doesn't mention that it offers him a chance to socialise with his peers, something he finds almost impossible due to his autism.  Rhys isn't the only child with additional needs to use this riding school, there used to be a Riding for the Disabled group based there so their insurance is geared to children with additional needs.  It's not the most local stable, but the more local ones can't take him as they are not covered by insurance for children with additional needs like Rhys'.  So that incurs additional cost for transport.  A scenario all too common for those of us who have children with additional needs, sometimes the local option isn't viable for our children, like the Beavers Colony for my elder son - he has to go to an out of town Colony where the leaders have more experience with children with additional needs.

That article is actually the tip of the ice berg.  Now these cuts are happening I have to consider ending all the additional extra curricular activities I have in place for all three of my children, all of whom have autism amongst other complex needs, that I put in place to try and help their physical and social development in place of hideously overstretched NHS physiotherapy and speech and language provision.  I'll have no choice if it comes down to that or heat/eat.  On the surface of it many may say that's life, that in this recession many families are having to do without extra curricular 'treats', but in our case they're really not treats.  The long term effects of this could mean the difference between my children having a level of independence and being able to go out to work or being entirely dependent on what is left of the Welfare State for the rest of their lives.

Like many parents I am ambitious for my children.  However rather than hoping they'll go to a good university and get a good career my ambitions for them are that they are happy, that they are able to live independently (albeit with some level of support) and that they are able to work.  Ever since my eldest was first diagnosed six years ago I have sought every bit of help and intervention that I can to achieve the best possible life outcomes for them.  With these cuts these ambitions may be impossible.

So what do these top ups cover?  Mainly they help where the DLA just isn't enough to cover the additional expense of having a child with additional needs.  The increased utility bills from the extra laundry we do (continence is not a strong point and when food is a sensory experience it gets everywhere) and obviously they are higher because we are home more than most.  Replacement of clothes that have been chewed or wrecked (another sensory thing plus a penchant for walking round on knees).  Awkward diets because they won't eat x or y one week and then the next they will eat x or y and not a or b.  And yes they would rather opt to starve so no they won't eat when they're hungry.  Increased fuel bills to get them to activities and to hospital appointments (no the mobility component doesn't quite cover it).  We have to run our own second car in addition to the Motability car as often we need to be in three places at once.  Replacing household items that have been hurled across the room and broken.  Child proofing the house to prevent them hurting/killing themselves.  This list is just the start.

Everything in our lives is a fight.  A fight for getting my children a decent education (four years fighting for statutory assessment), a fight for ensuring they get appropriate medical care (I had to transfer my daughter to another hospital to ensure she got prompt cardiac care), a fight for the disability living allowance awards they get.  I have appealed twice in the last 12 months about the decisions made for this DLA.  It's incredibly draining and sometimes I do hit rock bottom but I can't give up for my children.  And this is why I will ask you again now, sign the Every Disabled Child Matters email.  For me, for my children and for the other thousands of families out there living in fear today.

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  1. Fantastic article. And as you say this is just the start: next year I have to choose which of my disabled children will qualify for disability payments as it will be limited to one per family. I only wish disability was limited to once per family, never quite works like that though :( Then there is the fact that we HAVE to have a fourth bedroom for safety purposes (we always planned for them to share but the risk is too great)- should we end up on housing benefit there is no provision for this, even with it being a disability need: we will be limited to the 3 rooms. We do our best for our children but it gets harder and harder to build them a non-dependent future.

  2. Yes we have the same situation, we have to have four bedrooms on medical advice but will be capped to three bedroom housing benefit rate.

  3. I have no experience of this. It doesn't stop me being horrified and fearful about what will happen for families with children with disabilities. About what will happen to those grown-up children when their parents, who have fought for help all their lives, are knackered into an early grave.
    Who will be there then ? Services and provision are being eroded on a daily basis it seems. The latest Lords decision (to cap benefits for such children) yet another smack in the teeth.
    I don't know how parents of children with additional needs sleep at night. The stress and worry must be monumental.
    Most of all though, I don't know how the people who make, and those who support, decisions like this can sleep at night.

  4. I have signed. Thank you for making this real. Most of us have no idea and I hope this will help people understand and say this is wrong.

  5. No one thinks of the cos of an awkward diet, or the extra heating costs because they can't deal with the close contact of clothes.

    Oh not to mention that a lot of disabled don't qualify for the warm home scheme because a person in the household works.

    It's just a legal way to kick us when we're down.

  6. Thankyou, just signed. It doesn't affect me personally - at the moment. I hope to God things stay that way but none of us know what the future holds. It is arrogant to think that any of us can escape these things - one second of a driver taking their eye off the road, an awkward fall in the playground, an undiagnosed medical condition kicking in and anyone of us could be in the same boat.

  7. I've signed and posted on FB although I am sure hardly anyone will sign on FB as they are not affected and don't understand the difficulties faced by parents with children who have special needs.

    I am "lucky" in that my son probably only has Asperger's Syndrome and is high functioning so we don't have a lot of the issues to deal with that other parents do.

  8. Sorry meant to post as well:

    I didn't understand disability before I was slapped in the face with the evidence about my son and now I am incapacitated and claiming ESA. I suspect that is the same for most of my colleagues :(

  9. I have fought the DWP for thirty years so i know first hand the many hurdles that you have faced
    To bring any sick and disabled person into these cuts is the most appalling judgement outside of Nazi Germany but to pick on the disabled children there is only one person in history that would have done that and his name was Hitler

    So now we have David Cameron to be added to that list and i regret to say that he is most unlikely to change his view just like Hitler didn't with the sick and disabled and Jews

  10. If people are being forced to work in order to receive their benefits then they are also being forced to work for much less than the NMW. It's not work experience, it's not volunteering, it's not an apprenticeship so people would be protected by the National Minimum Wage Act. It is actually illegal to pay people less than the NMW so I wonder how they, the Government, are going to get around that, and not paying travel expenses too!! That would be £20 a week in travel alone, to go work for free.

    I put myself on the Lone Parent New Deal programme at the beginning of this year. This included a three month work placement, chosen by the agency running the programme. I was sent to work for an organisation which had a large number of people who were there on work placement or as volunteers. Yes, it was nice to have a purpose but I was exploited, I was expected to carry out the same duties as the paid members of staff and in fact covered for staff that were taking their holiday entitlement. The training I was promised wasn't given so I left not having updated a lot of the skills I would like to have updated. I was also told I could claim my travel expenses but I wasn't paid the full amount so in effect I was paying the organisation for my services. Before my three months came to an end they had already lined up my replacement, yet another single mum trying to better herself by gaining work experience. More free labour for them.

    I came away feeling the only people who gain anything from this sort of situation are the Organisations involved. They are getting free labour but not delivering the training or experience they promise to. I was also led to believe there could be paid employment at the end of it but after a few weeks of me observing the system it was obvious that they wouldn't be employing people when they could get them for free.

    The system stinks!

  11. My apologies, I was posting in response to the workfare post but somehow my comment has ended up here! So sorry!


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