'COUNCIL'S CUTBACKS MAY FORCE US TO LEAVE OUR HOMES' Disabled children suffer from lack of facilities as authority saves money.

Byline: Abby Alford

DISABLED children are being denied basic facilities because a council wants to save money, par-enthave claimed.

Lowis Hughes, and Natalie Pearson and her partner Tom Mason, told the Echo they have been warned they may have to uproot their families because the Vale authority will no longer pay for planned improvements to their council homes.

But they said the hoped-for building work was their last chance to have normal lives because of a shortage of suitable council housing in the area.

"We have tried everything to find suitable housing, but there are no suitable houses, which is why we needed the extension," said Miss Pearson, 27.

Miss Hughes added: "I had to wait four years to get the bungalow for myself and Luke and it's actually one that's built for an old person, so it needs updating so Luke can use the bathroom."

All three parents are full-time carers for their disabled children, so cannot afford to buy a house or to move into private rented accommodation.

Miss Pearson, who lives with partner Tom, 40, and their other daughters Seren, four, and Summer, six, in a three-bed house in Boverton, near Llantwit Major, said Sienna's occupational therapists recommended an extension should be built so she could have a bedroom downstairs big enough to accommodate a mechanical bed, hoists and washing facilities.

Sienna, thought to be the only girl in the UK with Opitz Syndrome, a genetic disorder that causes wide-ranging developmental disabilities leaving her unable to move on her own, currently has a box room upstairs.

Miss Pearson said last autumn the Vale council approved a pounds 60,000 disabled facilities grant, plans were drawn up and planning permission given.

But they have since received a phone call telling them the money is unavailable and they might have to move.

"It's like they're telling me my daughter isn't worth pounds 60,000," said Miss Pearson. "And it's not just us that's affected, this is hitting all disabled children in the Vale."

Miss Hughes said occupational therapists recommended a new wet room be built for Luke, incorpor-atina floor-level shower that he could use while sitting in his wheelchair.

"At the moment the bathroom isn't even big enough to turn his wheelchair around in so I have to brush his teeth and wash his face in the living room," she said.

Miss Hughes also said she was promised a disabled facilities grant, which has now been withdrawn.

She said: "Luke has had schizencephaly, which means he can't walk, can't stand on his own, has limited movement in his arms and has to use a wheelchair.

"But he's a bright boy and knows what's going on and is upset be-caushe doesn't want us to move."

Mike Ingram, the Vale's operational manager for public housing services, said: "Where the works are reasonable and practical the works will be undertaken directly by the council housing service and will not go through the disabled facilities grant route.

"The change allows the housing department, in discussion with its tenants, to consider all of the housing options available to meet a disabled client's needs.

"The process changes have been introduced to improve services to disabled clients, providing a more responsive, efficient service.

"All requests for adaptations from council tenants will be assessed by the housing department prior to consent and implementation.

"Where the extent of adaptations is such that a transfer to a more-suitable property might negate the need for such substantial work, then this option clearly needs to be explored.

"In some circumstances, the property itself, because of its location or design, might prevent some adaptations. Welfare of the client is the paramount concern and any decisions taken will involve not only the family, but other professional views."

He said no final decision had been made in Sienna's case, "but the proposed works would require major internal and external re-modelling of the property".

'I can't believe we have to fight again'

SIENNA could end up living in her fifth home in just two years.

For the first year of her life the Children's Hospital in Cardiff was her home because the family's small house in St Athan was not big enough for all the monitors and machines she needs to keep her alive.

Her parents finally squeezed her into their St Athan home while they continued to fight for a bigger house.

The Church in Wales then let them move into the four-bed rectory in St Athan as the Vale council had nothing suitable.

But after eight months they had to move as the new vicar was moving in and they were found their three-bed house in Boverton by the Vale council.

Miss Pearson said: "We have done nothing but fight since Sienna was born and I can't believe we are having to fight again."It's like they're telling me that my daughter isn't worth pounds 60,000. And it's not just us that's affected, this is hitting all disabled children in the Vale.

CAPTION(S):

Natalie Pearson and Tom Mason with their daughter Sienna, two, who has the rare genetic condition Opitz Syndrome Luke Hughes in his wheelchair