Great Sankey couple asking for Government help for families of disabled children (From Warrington Guardian)
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Great Sankey couple asking for Government help for families of disabled children
8:40am Thursday 24th October 2013 in News
A FAMILY are taking their case to the Court of Appeal over a Government rule that denies financial help to disabled children when they need it most.
Cameron Mathieson died aged five in October 2012 after being the only person in the world to be diagnosed with both cystic fibrosis and Duchenne’s muscular dystrophy in the genetic combination he had.
The bubbly tot, who his family said always lived life to the full, spent most of his life in Alder Hey Hospital and had his Disability Living Allowance (DLA) removed after spending more than 84 days in hospital.
Despite their being no gain for themselves, the Mathieson family are challenging the DLA ‘84-day rule’ so that no other family with a disabled child who spends long periods in hospital will have to endure what they went through and have essential benefits taken away from them.
It is estimated the rule affects 500 families a year.
Dad Craig, who lives in Padgate, said: “It’s one of those things that initially sounds reasonable until you think through what really happens.
“Almost every family at Alder Hey see their costs go up massively and I have seen families go through their savings in three months.
“We had to give up full-time work to care for our son full time and it takes a tremendous amount of work with an illness that complex.
“The Government assumption is after three months there is enough time to make alternative arrangements and the child to get used to living in hospital.
“I would love the opportunity to talk this through reasonably with someone in the Government and make a fair system.”
Removing Cameron’s DLA also had a knock-on effect with other benefits meaning his family lost £500 a month.
Money needed when they had extra expenses travelling to hospital and to look after Cameron’s family including brothers Ben, aged 16 and Guy, aged eight and sister Georgia, aged 17.
Craig, aged 44, said: “When they told us he had a limiting condition, we said that won’t mean his life is limited.
“He didn’t do sick or disabled, he did ‘I’m having a great time while I’m here let’s have fun together’.
“He had a real effect on people and more than 700 people attended his memorial service and Alder Hey used bank staff for the first time to allow employees to attend.”
Craig and wife Lynette, who run Cammy’s Coffee Shop at King’s Community Centre in Great Sankey, hope to start a charity in Cameron’s name to provide to support after children have been diagnosed with life-limiting conditions in every specialist children’s hospital in the country.
The former social worker, who had to give up his job eight years ago, added: “If the Government won’t do what’s fair, we can take over and help families.”
The Government has argued that the suspension of DLA payments is justified when a child spends longer than 84 days in hospital because a patient’s needs will be fully met free of charge by the NHS.
A spokesman from The Children’s Trust and Contact a Family said a recent report highlights that most of the children affected by this rule are likely to have severe disabilities needing round the clock care, which hospitals struggle to provide without the help of parents.
Residents can sign a petition to get the law changed at the King’s Community Centre, Marina Avenue.
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