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|TX: 15.02.07 - Mobility Allowance for Disabled Children
PRESENTER: JOHN WAITE
|THE ATTACHED TRANSCRIPT WAS TYPED FROM A RECORDING AND NOT COPIED FROM AN ORIGINAL SCRIPT. BECAUSE OF THE RISK OF MISHEARING AND THE DIFFICULTY IN SOME CASES OF IDENTIFYING INDIVIDUAL SPEAKERS, THE BBC CANNOT VOUCH FOR ITS COMPLETE ACCURACY.
Now a couple from Lanarkshire's trying to mount a legal challenge against a law that denies mobility benefit to disabled children simply because of their age. Steven and Wendy Meek believe the ruling that under threes don't quality is unfair and overlooks the needs of severely disabled children in their earliest years of life. Their son Justin was born two years ago with a condition which has left him entirely dependent on his parents for his most basic needs. The Meek's do receive £249 per month from the care component of the Disability Living Allowance but the Department of Work and Pensions has told them that Justin doesn't currently qualify for the mobility component, which is worth £180 a week because he isn't old enough. The Meek's say the extra money would have helped provide a specially adapted vehicle to get young Justin around and they think the law should be changed.
Justin has a condition that is a Prader-Willi like syndrome, he is the only person in the UK to have it, so we haven't really got to the bottom of all the ins and outs of it. He also has hypertonia, which is muscle weakness, which is not related to the Prader-Willi but that's the reason that he's oxygen dependent. Justin can sit unaided and that's about the level of his development, he has no speech, he has no mobility - he can't roll, crawl, he can't weight bear in his legs - he can't actually take fluids independently, in order to have fluids they go down a nasal gastric tube that he has in place and he's on oxygen 24 hours a day. He relies on us for all of his care.
He's changed our lives forever, completely and he's enriched our lives totally. But it has meant a complete change of what we have done as a couple and what our aspirations were. Simple things like going to the shops are - the best way I can describe it is like immobilising a small army. I would never change it for the world, not one bit, but it's been a struggle.
That's the oxygen coming out, you can actually physically hear that the oxygen is coming out. What we would do next would be to get the end of the Justin's tubing and attach it on to there and then the oxygen's going obviously straight up the nasal [indistinct words] and into Justin's nose. Justin is about four stone at the moment, he's actually lost weight, we have him on a very restricted diet - he's on nearly 600 calories a day - and he's actually got down to that weight, so this is actually quite a healthy low weight for Justin. He is an extremely heavy child. And the other problem is that when you lift Justin, because of his lack of muscle control, he doesn't actually hold on to you, so when you're carrying him it is like carrying a dead weight effectively. You have to lift his whole body weight, he doesn't help in any shape or form.
He has a little trait - when he's a happy wee chappy his wee toes wiggle - so that's the kind of sign that we know that when he's quite content. Very much a routine, when you break his routine he'll let you know about it. He's a stunning looking little boy - pure blonde hair, blue eyes and the most gorgeous skin in the world. But I'm his dad, after all I'm going to be biased.
As you can see the buggy's rather cumbersome, it's a bit of an ordeal even getting out the doors. Children who do not have any disabilities are not on oxygen like Justin, so as well as the fact that we have to carry, lift and lay Justin everywhere, we also have to carry all Justin's equipment with him, which is quite substantial because Justin's tube fed, so we have all the tube feeding equipment, we don't just have a simple backpack full of nappies when we take Justin out. We also have Justin's special buggy, which is a monstrosity of a thing - it's a huge - we have to take that with us everywhere we go and we have the ordeal of trying to fit it into a car and then once we get it out the car to actually put it up, construct it, because we need that to carry the oxygen. So it isn't a simple case of carrying a typical two year old child about.
I ran a very successful [indistinct word] company and Wendy - we had a private children's day nursery, we subsequently sold those businesses just because of the level of care that Justin requires and we both now - I don't know how Wendy would cope on her own looking after Justin and I don't think I would be able to cope on my own looking after him just with the level of care that's required on a day-to-day basis.
There are two parts to the Disability Living Allowance which is money that is given to any child or adult who has special needs. The first area's called the care component and that's granted at three levels, Justin has always been on the high rate of this component because he relies on us for all of his care needs. Any child who's on the higher rate of the care component, after the age of three, they can apply for what's called the mobility component. The mobility component is what allows you to get a special adapted car to meet the person's needs. However, this can't be granted until the age of three and that is what we're arguing against.
Justin will be awarded the mobility component of DLA in June, we actually have the letter to that effect. The reason we're so keen to fight it is because it's an arbitrary law and it's wrong. If we are successful with this Justin will not be affected by it but other children are and I guess if we adopted an attitude saying - well Justin will get it, let's just move on with our lives - but it's wrong, it's fundamentally wrong. It should be awarded based on need and not on age. A child who is disabled, we shouldn't be making decisions whether they're three or whether they're not three, we should be making decisions on what the child needs and what the child doesn't need. Not that we're trying to be any kind of martyr in any way shape or form, we simply have a belief and it's something that's completely wrong and has to be changed.
Steven and Wendy Meek. Well the mobility component of the DLA is administered by the Department of Work and Pensions, which declined our offer of an interview but in a statement we were told:
There will always be cases that are very difficult to assess but the government considers that any further amendment to the conditions would just not be justified.
David Mundell is the Meek's local Conservative MP. Is that good enough for you David, anything you can do?
No, I don't think it is good enough. I've met with the minister Anne McGuire to try and persuade her that really we have to focus on a needs basis not on some sort of jobs worth arbitrary age limit. Justin is clearly in need of this support and that should be the criteria which determines whether he gets it, not whether he has reached some arbitrary age limit.
So in a word you'll be fighting on, on their behalf?
I'll be fighting on, I hope that we can have a members debate in the House of Commons because I'm sure there are other children across the UK in the same position as Justin.
David Mundell, Conservative MP for Clydesdale, thank you very much.
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