Shillingstone mum warns of 'huge gap' in care service for young people (From Dorset Echo)

Shillingstone mum warns of 'huge gap' in care service for young people

9:29am Wednesday 24th June 2009

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A MOTHER whose daughter has severe autism and learning disabilities is campaigning for better services for young people and their families.

Maree Webb, of Shillingstone, aims to highlight the ‘huge gap’ in provision and options for 19 to 25-year-olds, once they leave special schools and transfer to adult services.

Mrs Webb said: “I know only too well the struggle that many families face when battling for services, while also balancing caring for their young person with bringing up other children or just trying to live a decent life.”

Her daughter Lindsey is now 18 and will be leaving the special school she attends in Poole next year.

Lindsey, who needs two-to-one adult support, has never attended youth clubs dues to her severe problems and not enough support being available.

Mrs Webb said: “We have spent years wandering around with nowhere to take her at weekends and school holidays due to not coping with the mainstream crowds and the problems of trying to ‘fit in’ with what society sees as acceptable.”

The mum-of-three said taking an autistic teenager, who makes strange loud noises or ‘jigs about in an odd manner’ out in public, often led to laughter or verbal abuse.

She said it could be ‘an impossible task’ for carers and parents to keep their young person in or near a queue, out of other people’s way or from grabbing someone’s things.

Other challenges include carers having to struggle with the young person in tiny unsuitable toilets.

Mrs Webb said: “After all that the young person may not be able to cope with all the crowds.

“By which time the parent or carer is exhausted, humiliated, often ridiculed and feeling totally isolated, never wanting to go out again.”

She added: “Inclusion does not always work. Many young people with these difficulties need purpose designed leisure facilities.”

Mrs Webb has been ‘so disillusioned and frustrated by the lack of choice for families’ she has conducted a survey to try and identify what is missing.

She had 29 replies out of 150 questionnaires distributed at special schools across the county.

Mrs Webb said the ‘overwhelming feeling’ of those who replied, was the limited provision of services in the Dorset area for autistic young people to access, such as specialist colleges, leisure and respite facilities.

She said: “Some of the stories were quite dire and sad really.

“The transition of children to adult services definitely needs changing, there’s just not enough help really.

“Many young people with severe learning disabilities or autism end up being placed in day services with much older people doing activities which are not suitable for them, or having to be sent away to residential placements long distances away and lose their connection with community.

“Others are left at home with parents struggling to care for them and keep them occupied during the day with not enough respite and not enough help during the day.”

She added: “This is not to decry the services already out there, it is simply to look at how big a problem the gap in services really is and what could be done to address it.”

ONE service used by Maree Webb’s daughter Lindsey is facing difficulty if new funding cannot be found.

Wessex Autistic Society, the free Dorset advice and information service for parents and carers of children with autism, has warned it may face closure if it fails to secure funding for 2009/10.

Run in conjunction with Disability Wessex, the charity provides highly trained advisers for families to turn to if they know or suspect their child may have autism.

Mrs Webb said: “We have services from them for respite.

“Our daughter has two weeks a month with them, when she stays in the respite centre at Portfield School.”

She added: “We will be able to use them until Lindsey is 19 and then she can’t use the overnight facility any more.”

Launched in 2006 with the help of a three-year grant from BBC Children in Need, this funding has now ceased and the charity fears for the future of the service.

The helpline has assisted more than 1,400 local families over the past three years, dealing with in excess of 2,000 different issues affecting families, including benefits rights, community support services, respite care services and special education.

It also assists with appeals and advocacy for families who need help obtaining correct diagnosis of their child’s condition and gaining funding for proper support.

The service was set up after a multi-agency review of services for children with a disability, which identified the high number of children with autism in Dorset.

Out of 2,494 children identified with a severe disability in the area, 581 were diagnosed as being on the autism spectrum.

It costs £45,000 per year to cover highly trained staff and administration overheads but the service receives no statutory funding. The charity has made several applications for grants to pay for the running costs but without success.

Now it has taken the decision to turn the helpline into a community service, dependent on funds raised by the society and the goodwill of the local people and organisations in the community it serves.

Potential donors are asked to telephone 01202 703584 and speak to Debbie Anderson.

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