Jane Raca Tells Cameron To Give Disabled Kids Same Care As Abuse Victims

A mum who won a lengthy £2 million legal battle to have her severely autistic son put intocare has accused the Government of favouring abused children over disabled children.

Jane Raca has written a plea to David Cameron to improve care services for disabled children.

The 50 year old former lawyer, from Edgbaston, is also urging the Prime Minister to provide better respite care and help at home for parents of children with special education needs through the new Children and Families Bill due to be debated in the House of Lords.

And she says that Cameron should enable mums and dads to appeal all parts of education,health and care at tribunals - they are currently only able to petition against the education content.

Jane claims these points are being overlooked because the Government says that local authorities funding is so restricted that many councils do not have enough money to care for disabled children and child protection.

Jane fought Birmingham City Council in the courts to secure funding for her severely autistic son James to attend a special boarding school in Devon in 2007.

She realised she could no longer cope with the youngster who suffered a brain haemorrhage when he was born nearly 16 weeks premature in 1999.

James was diagnosed with cerebral palsy, epilepsy and severe autism which made him aggressive towards his family.

He was unable to walk or talk and needed 24-hour specialist care.

"We brought James's educational needs to tribunal and won but the judges were not allowed to consider his social care needs," said Jane.

"It took us another five years to get the social care sorted out. In total I produced four files of evidence, made a complaint which was upheld on all eight counts and involved my MP. The Government is arguing that local authorities may not have enough funds for both disabled children and those at risk of abuse.

"It is therefore refusing to introduce a statutory duty on local authorities to provide the social care part of the new joined-up education, health and care plans, which will replace statements of special educational needs.

"It is also refusing to allow a right of appeal to an independent tribunal over the health and social care parts of the plans.

"That means that what happened to my family will be no different after the Bill is enacted than it was before.

"Parents needing respite and home help for children who need 24 hour care, will have to battle a failing, underfunded social care system, using internal complaints procedureswithout recourse to a proper independent tribunal."

After winning the tribunal, James moved to Dame Hannah Rogers Trust in Devon and has thrived.

"James is 14 now and has just had his first annual review after a year of not coming home and it is the best one he has ever had," said Jane, who is married to Andrew and has two other children, Tom, 16 and Elizabeth, 10. My mother has moved to within two miles of the school, so the family are able to visit him regularly."

Jane published a book last year called Standing Up for James charting her struggle to get adequate support for her son.

"I have received many emails from parents all over the country, with desperate stories," she said.

"I am contacting all of them to ask them to write to the Prime Minister directly, to ask the Government to change its position, and to accept that you cannot ask local authorities to choose between disabled children and abused children.

JANE'S LETTER

Dear Prime Minister,

I am the mother of a severely disabled child.

He has cerebral palsy, epilepsy, learning disabilities, challenging behaviour, and is severelyautistic.

He uses a wheelchair, can't walk or talk, can't use his left hand and is doubly incontinent.

I am writing to you to express my concern over the lack of social care provision for children like him.

Many local authorities are failing to provide respite and home carers, and this is causing great suffering.

There are parents trying to survive for years, raising their children on little sleep, with no breaks and no help.

They are experiencing depression, exhaustion and marital breakdown.

They have no hope of affording the ongoing specialist care which is needed.

If they can summon the strength to take on their local social care department, they face a lengthy, ineffectual complaints process.

What they need is a fast, independent forum, with the power to award the necessary support for their child.

The Children and Families Bill misses a golden opportunity to achieve this.

It introduces joint education, health and care (EHC) plans in place of statements of special educational needs.

For the first time parents will have all their disabled child's needs recorded in one place.

But they will still only be able to appeal the education content of the plans to an independent tribunal, as is the case now.

That happened to my family; we won an appeal over my son's school, but it took us another five years to get the social care he needed.

Why can't the bill provide a right of appeal to tribunal, over all the contents of EHC plans?

The government has said that it doesn't support a right of appeal against social care issues.

It doesn't want local authorities to be under a statutory duty to provide the care part of individual EHC plans, since they may not have enough money to look after both disabled children and children at risk.

This is the finite resources argument, and goes to the heart of the matter.

We define ourselves as a society by the priorities we choose.

Surely these priorities include providing humane levels of support to people who from birth will never be able walk or talk, let alone work?

This should not have to be at the expense of protecting children at risk of abuse.

Pitching those two sets of critical needs against each other is unacceptable.

The National Autistic Society has presented the government with a petition of over 10,000 signatures on the importance of a single point of appeal from all parts of EHC plans.

That is a lot of parents, but it is also just the tip of the iceberg.

They are telling you that they are not prepared to carry on battling on all sides.

They need the EHC plans to make a real difference to the most vulnerable people in our society.

Yours sincerely

JANE RACA

Author of Standing Up for James