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Family and Health: Experts don’t know what it’s like for families with special needs children like ours

Proposed swingeing cuts in service provision for adults with special needs which are expected to be ratified at a full Kirklees Council meeting today could have dramatic implications for some of the most vulnerable people in Kirklees.

Family and Health: Experts don’t know what it’s like for families with special needs children like ours

Proposed swingeing cuts in service provision for adults with special needs which are expected to be ratified at a full Kirklees Council meeting today could have dramatic implications for some of the most vulnerable people in Kirklees. HILARIE STELFOX talked to one family who fear the day centre care currently enjoyed by their 41-year-old brain damaged daughter may eventually disappear altogether.

RICHARD WRIGLEY says he couldn’t have a better daughter from a father’s point of view than Elizabeth.

Their shared love of football has been one of the joys of parenting 41-year-old Elizabeth, who was brain damaged at birth and still lives at home.

“She’s football mad,” said Richard. “We go to all the matches and she absolutely loves it.”

But, quite clearly, there is also a downside to caring – as Richard puts it “from her birth to our deaths’’ – for a child with special needs.

The Wrigleys, who live in Paddock, have many worries about Elizabeth’s future, not least because of the threat to services for adults with disabilities currently provided by Kirklees Council.

Richard believes that councillors contemplating service cuts and council officials simply don’t understand what life is like for families such as theirs.

Richard said: “They have all these experts who just don’t know what it’s like for us. They have not been carers.”

And that, they feel sure, is the biggest problem of all.

Since leaving school at 18, council-run day centres have been the focus of Elizabeth’s daily routine.

Without them, Richard and wife Jennifer say she would be lost.

As Elizabeth herself says: “I’ve got a lot of friends there.”

But because of proposed budget cuts by Kirklees Council which will reduce spending on adult day services from £1m this year to just £345,000 by 2013/14, the Wrigleys are greatly concerned that Elizabeth’s whole way of life will be affected.

And they are not alone.

Richard, 62, who is a former Conservative councillor, said: “Without the day centres, Elizabeth would just lie in bed until lunchtime and then sit watching DVDs.

“Elizabeth was asked if she would enjoy spending the day with her mum and dad, but we are in our 60s and don’t have the same energy we used to – and we know other parents in the same position.”

Life for families with a disabled child is always tough and that’s without any additional stresses such as ill health.

“It just seems as if for so many years you have to fight for one thing or another,’’ said Richard who is having ongoing treatment for a tumour on his windpipe. “You have to find your way through the red tape.”

Elizabeth, who has an older sister, Jane, was born at a time when care facilities for children with disabilities were being developed. One of her parents’ fears is that budget cuts could force services to unravel.

“Although she was brain damaged at birth we didn’t get a diagnosis until she was 18 months old,” said Jennifer. “And there was no help available for us until she went to school.”

In fact, even getting a diagnosis proved to be difficult.

“My wife was labelled as a neurotic mother,” says Richard.

Jennifer added: “I knew there was something wrong, I could just tell. She was slow to develop and wasn’t walking or talking.”

Elizabeth, who has speech difficulties, was one of the early pupils at the newly-opened Lydgate school in New Mill and then transferred to the now closed Turnshaws school in Kirkburton.

The demands of caring for her meant that Richard and Jennifer never went out in the evening together and have only had one holiday without their daughter in 41 years.

“The first time we had a night out it was at New Year and she was in her 20s,” said Richard.

“Elizabeth can’t be left on her own because she can’t look after herself,” added Jennifer, who has never been able to take full-time paid work outside the home.

“She couldn’t cross the road on her own or get a bus.”

In the early years Elizabeth’s condition also impacted on her sister, Jane.

“It was difficult for us to explain why we had to give so much attention to Elizabeth,” explained Jennifer. “It can make siblings resentful because they don’t always accept or understand the reasons.”

However, the Wrigleys say Elizabeth has a great sense of humour and a determined personality.

“She can be really funny,” says Richard. “But if she doesn’t want to do something you can’t make her. And she’s got an amazing memory. She can tell you who scored a goal in a Town match from two seasons before.”

Elizabeth enjoys doing 1,000-piece jigsaws and is interested in quizzes, but has no concept of money.

One of her favourite pastimes is watching DVDs of old TV series such as A Family At War and In Loving Memory. Her parents also take her to see musicals.

At the moment, Elizabeth spends three days at week at the Brian Jackson Centre, one day at week at Highfields Day Centre and one day a week as a volunteer at the Samaritan charity shop in Marsh.

From her disability living allowance and income support she pays £10.90 a day for the care package.

Once every two months she spends four nights at the Cherry Trees respite centre in Shepley to give her parents a rest.

Day care provision includes everything from arts and crafts to day trips.

 

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