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Happy 3rd birthday! You're now disabled!

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Crippled Monkey | 10:40 UK time, Wednesday, 10 January 2007

Now here's an interesting question with which to begin your Wednesday. When are you too young to be disabled?

When you're two years old, apparently. Seems that you can't be disabled until you're three.

That, anyway, is what the parents of Scottish toddler Justin Meek have been told. Justin, who has Prader-Willi Syndrome, has been denied mobility allowance because officials say he is too young to be disabled and has to wait until he is three years old before he'll receive it. And now, to add insult to injury, Justin's parents have also been to fight this ruling because, according to a Legal Aid Board spokesman, "it wasn't felt a reasonable use of taxpayers' money to grant this application".

Justin and his family need the monthly allowance of £212 to buy a car, which will assist them in taking him to hospital three times a week and carry the oxygen and other equipment which keeps him alive. The Meeks' campaign has been backed by Tory leader David Cameron, whose four-year-old son Ivan has cerebral palsy. A spokesman for disability minister Anne McGuire, whom the Meeks have lobbied about this matter, refused to comment on individual cases, but did say that "original legislation held that children had to be aged five to be entitled to the higher rate mobility component of Disability Living Allowance. Following further medical advice, that legislation was amended in April 2001 and the lower age limit was reduced to three. This is the age at which it is considered the majority of children, including those without any disability, should be able to walk".

Justin Meek will reach the grand old age of three, when he will finally be entitled to the mobility component under government rules, on June 2. Crippled Monkey would like to be the first to wish him a very very happy birthday indeed.

Comments

  • 1.
  • At 09:18 PM on 11 Jan 2007, ali saber wrote:

Too young to be disabled....what a painful comment from authorities.
Any how , I think that medical conditions are very variable, so legislation must consider medical decisions.

  • 2.
  • At 12:40 AM on 12 Jan 2007, Lisa Madigan wrote:

I can't believe that authorities have done this yet again. It's age discrimination. I had the same problem when I was 2 years old. I was diagnosed with ARTHRITIS at the age of 2 and my parents had problems getting DLA for me. The authorities couldn't believe that a child of 2yrs old would be suffering with ARTHRITIS, which they said arthritis only happens in older life. Despite medical reports etc, they still wouldn't believe that a child can also suffer with arthritis. The authorities attitudes is wrong, your disabled or become disabled at any age and the DLA should be granted at any age to. It's about time the authorities realize that and come out of the dark ages.

  • 3.
  • At 07:23 AM on 12 Jan 2007, Helen wrote:

My friend had to go through this situation a couple of years ago. She was a single parent and couldnt afford to buy a car. she had a child with a heart condition and cerebral palsy and ended up housebound because there was too much equipment to ferry about. In the end a local charity stepped in and provided a car for her and her family, her daughter died 2 weeks later.

  • 4.
  • At 02:18 PM on 12 Jan 2007, cat forster wrote:

I tried to apply for dla for my son who has hearing difficulties fair enough its not as bad as children with cerebral palsey or downs and was told to reapply when he turns three, but I needed support when we had to travel 4 times a week to arrange cochlear implants it may be a hidden disability, but he's still disabled. I agree it is wrong to make people wait, but they make you wait just in case the disability goes, and we all know it doesnt.
We should get dla as soon as you know your child is disabled, not three years down the line, we all have proof from doctors, and consultants but they never take the reports which are legal statements for the child themselves, which states that they have a lifelong (and i hate saying this) problem. Lets hope that the Goverment take their head out of their backsides and do something for all disabled people.

  • 5.
  • At 02:45 AM on 13 Jan 2007, Stephen Meek (Justin's Dad) wrote:

Firstly... thanks for all your supporting comments. It's our intention to continue with this case and try and find a way of funding the legal costs ourselves or via some charitable organisations, as we and many many others believe this law is wrong and should be changed.

At present we are currently constructing a website justinmeek.co.uk and would be grateful to hear from anyone who has been affected by this law.
Thanks
Stephen Meek

  • 6.
  • At 09:19 PM on 14 Jan 2007, Claire Butler wrote:

The Government's argument for not paying DLA mobility until the child is 3 is that "this is the age at which it is considered the majority of children, including those without any disability, should be able to walk". Why is it then that Government's own guidelines state that Blue Badges can be issued from the age of 2. Surely there should be some consistency here - if they say a child is entitled to a blue badge at the age of 2 because of their disabilities, then they should be able to receive the DLA mobility component at the age of 2.

  • 7.
  • At 05:14 PM on 15 Jan 2007, Steve Hedger wrote:

We have two autistic children, and fell foul of the DLA mobility rulings as well - our daughter has no physical impairments at all, so we aren't entitled to a mobility allowance.

The fact that, at the age of seven, she won't walk anywhere doesn't enter into it, that's a choice, apparently.

The entire framework is patently written and supervised by people for whom the word 'disabled' is synonymous with 'wheelchair-user'.

  • 8.
  • At 04:58 PM on 23 Feb 2007, Sandra wrote:

Our daughter is nearly eleven years and is effectively quadriplegic- she has severe dystonia etc.

We had many problems getting the mobility component of DLA for her during her early years. People forget that it was the 'delightful' Mrs T who raised the age to 5years ( she also lowered the upper level by apx 5 years too). It was- believe it or not- New Labour who eventually brought it back down to age 3!

All too late for us- we had to wait the full five years.

We did, however, manage to persuade the local authority to let us have the blue badge for our daughter from the age of 3. (not the money-just the badge) Apparently it was discretionary although we were asked by the harridan in charge 'Is she very heavy then?'.

It was worth having though, and the first sweet success of many battles.

I think the age limit for using the badge should be scrapped altogether. If you get higher rate DLA you should get the mobility component and the badge!

  • 9.
  • At 11:52 AM on 13 Apr 2007, Andy wrote:

Their are too many narrow minded people who are empowered to come up with these decisions. The government should consult with special needs and disabled groups before making an informed decision. it shows that they feel it's too much trouble to get the facts first.

  • 10.
  • At 03:55 AM on 13 Jul 2007, Stephen Meek (Justin's Dad) wrote:

We have just been informed as of yesterday the following information. and we quote:
"Blue Badge Scheme to include Babies and Toddlers
The Scottish Executive has amended 'The Disabled Persons (Badges for Motor Vehicles)(Scotland)(Amendment) Regulations 2006'
Children under 2 will now be eligible for a badge if they meet the following criteria:
.he or she is accompanied by bulky medical equipment which can be kept in a motor vehicle but which cannot be carried around without great difficulty;
or
.he or she must always be kept near a motor vehicle so that he or she can, if necessary, be treated for that condition in the vehicle or taken quickly in that vehicle to a place where he or she can be treated.
There is going to be further guidance from the executive on what medical conditions will qualify. Unfortunately there is likely to be an increase in the cost of applying for the Blue Badge."

For anyone who has been following our challenge to the mobility component of DLA, I would like to inform you of exactly where we are. Since my last post we have been fighting tooth and nail with SLAB(Scottish leagal Aid Board)to fund Justin's case, however to no avail because it would cost to much money and only Justin would benefit from this, if we were to win that is, this is not about winning this is about the wellbeing of my wee boy and many other families who have children with disabilities, Justin has struggled for 3 years to keep it true, honest and most of all loving and I can only describe it as "like sailing against the tide", more for Justin than for me.

SLAB like all organisations have rules, one of which is,if your refused legal you can appeal ( simple enough), we have now appealed twice and the next step is for your legal aid application to be put before an independant sheriff, (simple enough), not so, we have waited nearly 7 months for a simple answer, and out of the blue we get a letter on the 4th of july, stating they are having an independant commity meeting on the 23rd of July, and on that day they will make a discision and then if both parties still disagree they will put it before a sheriff.

Speculation... Why has it taken 7 months to answer a SLAB application?
Why is the Scottish executive all of a sudden now awarding the Blue Badge to Babies and Toddlers?
And would it be possible the goverment in Scotland know more than they are letting on, and possibly building a defence to save face?
And why should the Scottish Executive award the Blue Badge to babies and toddlers in Scotland? why is Westminster not awarding the same? Would it be possibly connected to the fact that if Justin is awarded legal aid, it is our intention to proceed to the court of session in Edinburgh?

Justin's case has been a subject of the media for some 18 months now, in that time and before we have written, telephoned and even shouted to all political parties concerned, and only David Mundell, David Cameron and Jeremy Hunt were interested,infact David Cameron invited Justin for a chat at Capability Scotland in September 2006, we also telephoned Karen Gillion, Tony Blair and Gordon Brown, and we still await a reply.

Thank You for reading this, my only objective is to make things a little easier for children with disabilities.

Stephen & Justin Meek

  • 11.
  • At 07:59 PM on 18 Feb 2008, julie evett wrote:

Thank goodness for this site!! I have 3 children and the youngest Rose is 16 months of age. I am a single parent and work full time in a local secondary school. From today I am housebound and my children cannot attend school as my 3 door car is unsafe to get my disabled baby out of the car and be transported in safely and no room for adapted pram/ corner chair. Rose is hypotonic (floopy child with no head control) is severly visually impaired,epileptic and globally delayed in all areas. I cannot access doctors, supermarkets etc and im ANGRY. Rose has been awarded a disabliity badge today but we have no means of safe transport. I am meeting with my local mp on Friday because no one puts my baby Rose in the corner!!!

I was getting pretty edgy reading this. If I say I’m disagreeing with your post I would say nothing. Reading this is meaningless waste of time.

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