Families fear respite care cuts

Big issue: Families fear respite care cuts

Warwickshire County Council plans to cut £1.7m from its budget could leave carers at breaking point, reports Mary Griffin

Rebecca Page from Priors Marston and her daughter Aleisha Page, who suffers from autism

“My whole world revolves around Aleisha,” says Rebecca Page. “It has to.”

Rebecca’s life plan has changed dramatically since her daughter Aleisha was diagnosed with severe autism at the age of three.

Seven years on, Aleisha is never left alone, needing one-to-one attention 24 hours a day.

Rebecca, who lives near Southam and left her career as a specialist teacher to become a full-time mum, says: “She headbangs until she’s stopped, she kicks and punches and she is extremely active, climbing up furniture.

“She’s a physically fit 10-year-old who functions somewhere between a baby and a two-and-a-half-year-old.

“She has no language but communicates through Makaton (a system of signs and symbols).

“You can’t turn around from her to run a bath. If you’re not holding on to her she’s gone.

“I can only sleep when she sleeps and then it’s like sleeping with a newborn – that half-sleep where you’re always listening out.”

She adds: “It’s not parenting for me, it’s caring. I sometimes have to function like a professional. She doesn’t call me ‘mummy’ and she never has. I get punched and hit while looking after her – sometimes 30 times a day.

“So when respite is treated like some sort of holiday you can see why we are up in arms.”

Rebecca is just one of hundreds of parents in Warwickshire fighting county council plans to cut £1.7 million (or 20 per cent) from the Integrated Disability Service (IDS), which provides support for disabled youngsters and their families.

Carers save the state between £87 billion and £119 billion each year according to the Carers Trust – more than the entire NHS budget.

But for her undertaking, Rebecca gets just eight hours of respite each month, when Aleisha attends a four-hour Saturday club every other week, and 10 four-hour holiday clubs through the summer.

“This respite is a lifesaver,” says Rebecca, “but I’m expecting at least a 30 per cent cut to those hours and, if I don’t argue my case, it could be closer to 50 per cent.”

Rebecca has penned a five-page letter to councillors explaining her family’s challenges.

Ruth Walwyn, who is spearheading a campaign against cuts to services for disabled children, with her son Laurence

Leamington resident Ruth Walwyn, whose 15-year-old son Laurence has Downs Syndrome, chairs Family Voice, a campaign launched earlier this year by the IDS Parent & Carer Steering Group.

She says: “Warwickshire County Council statistics show that there might be nearly 7,000 Rebeccas in the county.

“Not all will face the same challenges but not all will have her skills.”

All children currently receiving short breaks will be reassessed under a new “matrix of need” re-written by the council. But parents claim the new matrix is “raising the bar”.

The council must save £70 million by 2014.But just two years ago a county council report found that investing in respite could actually reduce pressure on council services.

The report, written by Lynne Barton, Warwickshire’s former head of IDS, found a likely “correlation between this service and the reducing number of families in crisis requiring a service from social care”.

The same service in Coventry took a £200,000 (or 15 per cent) cut two years ago.

And a Breaking Point campaign by learning disabilities charity Mencap is now calling on all councils to halt cuts to short breaks services.

A Mencap survey found eight out of 10 families have reached or are about to reach breaking point, yet cuts are increasing.

Three years ago, the Government allocated £800 million to short breaks until 2015 – the highest level of investment in children’s short breaks England has ever seen.

But the money is not ring-fenced and Mencap has claimed there is strong evidence it is being diverted away from its intended purpose, possibly to fill other funding gaps in local authority budgets.

The charity is calling on the Government to ring-fence short breaks funding and has asked the National Audit Office to investigate how the money is spent.

Ruth says: “Warwickshire is making a huge cut in a short time scale, deciding on its final figure instead of first finding out what services are needed.

“We think what they are doing is dangerous. We’ve asked them to stop and plan this carefully so that changes can instead be made in September 2014. But they’ve said no.”

Here is a selection of responses from parents to the council’s consultation:

* “It feels like unless our family have a total meltdown or stop trying to care for our child, nobody will help us to give her a social life or give us a break.”

* “The proposals are so flawed that, if implemented, there is no possible way that we will cope.”

* “Since we heard about the cuts we have been living in fear of reductions in our support. This has added to the stress we have to handle every day and every night.”

No councillors or officers were available to speak with the Telegraph but the council’s press office released an anonymous statement reading: “These proposals put forward a framework to better assess the needs of children and families so the appropriate level of support can be provided and those in greatest need can be prioritised.

“The local authority has a duty to provide short breaks and these will continue to be offered based on assessed requirements. We have been very clear that no changes will be made to services currently provided until all individual circumstances have been reviewed. Until this happens we cannot begin to quantify how many families may be affected by the service redesign proposals.”

The plan goes before the council’s Cabinet on December 12.