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Friday, 28 November 2014

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Don’t take Tom’s lifeline say parents

THE parents of a Frizington boy with Down’s syndrome could be forced to hand back their lifeline car – just weeks before their son receives a wheelchair.

CELOMAX
Battle won: Carole Lomax has successfully campaigned for a motability vehicle to help her with son, Tom

By Julie Morgan

Eleven-year-old Tom Lomax also suffers from a serious neck condition, loose joints, severe flat feet and takes daily painkillers.

His mum, Carole, of Newtown, uses the car to drive him to hospital appointments at Newcastle, as well as to ensure he is transported securely.

“I am devastated,’’ she said. “We have to hand the car back as they say that Tom has two hours of PE a week. No one has come out to see Tom so how can the Disability Living Allowance people make a decision without seeing him?

“Tom would find it difficult to travel on public transport without any support for his back or neck. Worst case scenario is he could break his neck if he jolted it on a bus,’’ said Carole. “He is at a mainstream school, which offer two hours of PE a week, but he is very limited in what he can do.”

After her DLA payments to car providers Motability were stopped by the Department for Work and Pensions (DWP), Carole was told it would be picked up last Monday, just hours after Tom travelled to Carlisle in the vehicle to be fitted for a wheelchair. It is the family’s only car.

After last-minute tearful calls to Motability, it was agreed the family could keep the car until May 14. “We now have to wait to see if they will reconsider the decision,’’ she said.

On Friday, the family travelled to the Royal Victoria Infirmary at Newcastle for a routine check on Tom’s neck. A specialist discovered one of his vertebra has “flipped over’’ and there may also be a fracture. An MRI scan has been booked for June.

“We were so shocked,’’ Carole said. “We thought the pain he was feeling was in his feet.’’

Tom has been seen by RVI specialists since he was born. As a youngster, he was placed in plaster casts which were changed weekly at Newcastle and the family were subsequently able to access a Motability car when he was three years old.

“What has changed this year that makes it any easier for me to transport Tom?” Carole asked. “He is only going to get bigger. I can’t just carry him around.”

When he was two-days-old Tom had a colostomy bag fitted. “He still has soiling accidents and I don’t want him to get older and have to sit in his own mess on public transport. This is degrading for him and embarrassing for others,’’ Carole explained. “With the car I can make sure I have changes of clothes.’’

Carole, who works as a teaching assistant at St Patrick’s School, Cleator Moor, said: “I’m not telling a sob story. I just want Tom to have a full life doing what makes him happy, visiting family and friends and going to the beach.

“He can sit happily for hours burying toy figures in the sand, and then digging them out again. Having the car allows me to give him the best quality of life.”

A DWP spokesperson said: “DLA isn’t awarded because of a specific condition but rather how that affects someone’s care and mobility needs.

“For children’s fixed-term awards, we re-examine cases at key development stages which means they might not get the benefit anymore, or they might get a different rate.

“A decision on entitlement is taken based on the information we are given and any supporting medical evidence provided by the claimant. People have the right to appeal if they don’t agree with a decision.”

Have your say

To clear things up, I'm toms sister, Carole's daughter. Tom is entitled to higher rate disability living allowance, instead of him getting the money, it is used to hire the car. Anyone entitled to a car by DLA can pick what car they want BUT you have to pay a deposit, the higher spec car the higher the deposit. In this situation they need a car with a large boot space for toms large buggy, tom is in the very near future getting a wheelchair (being made as we speak) so he needs a big boot. He needs to have a car that has got a good safety rating due to the problems in his neck and spine. But as I said you can pick your own car.
I agree that a lot of details are missing and it does sound like a sob story.
My mam did not contact the whitehaven news for this, she wants more people to be aware of what is happening all over the country because the government are making cuts on everything. As we speak the situation is at a decision makers, the car didn't get took on the day they said it would because Carole has fought hard. She got a month remand. That month is up today but as it's with the decision makers she has got another week with the car. All this has put a lot of stress on the family, it's hard enough having a child with disabilities neve mind not getting the help that he's entitled to. Hopefully the whitehaven news can maybe do another piece on this when the decision has been made.

Posted by Natasha Saddleton on 14 May 2014 at 09:33

Shocking , this kid really needs it and you see people with a lot less disability than his keeping their cars with no questions asked, i have seen people walking to their cars with a walking stick in hand , but not using it to support them and then jumping in the car.This poor lad really needs it.

Posted by Peaky Blinder on 22 April 2014 at 13:57

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