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Mum's tears for disabled son who lacks the 24-hour care he deserves

PUBLISHED: 16:26 09 September 2009 | UPDATED: 11:14 12 August 2010

I just can t stop crying. I used to be quite a strong person, but now I cry about everything. This family is at breaking point. I am a desperate mother, a loose wire, I will do anything I need to do to get my son the care he needs. Jenease Sohpal has

I just can't stop crying. I used to be quite a strong person, but now I cry about everything. This family is at breaking point.

"I am a desperate mother, a loose wire, I will do anything I need to do to get my son the care he needs."

Jenease Sohpal has spent nearly 20 years battling to get her son Davinder the treatment he deserves.

Born with the rare Angelman Syndrome, the 19-year-old cannot speak, uses limited sign language and has the mental capacity of a five-year-old requiring round the clock care.

But throughout his life, she and her husband Kanwal, of Downe Road, Cudham, have spent thousands of pounds on legal fees to force Bromley council to place him in an appropriate school.

Now, nearly 10 years after winning a tribunal and High Court action against Bromley council, the family have been called to arms again as Davinder has been returned home after his last school year without a placement in an adult social care facility, unlike his other peers.

The 6ft stocky teenager requires two carers as he can get distracted and sometimes displays aggressive or inappropriate behaviour.

But Mrs Sohpal, who suffers from heart problems and high blood pressure, is caring for him alone while her husband works in the city and her 17-year-old daughter studies and works part-time.

Mrs Sohpal said: "It's very hard as a parent, because you think no-one else can take care of your son as well as you can. But it has got to a point that I am getting burnt out and so stressed, we need help, I can't do it on my own.

"We only have one car so I can't take him out when my husband is at work so he gets frustrated and his behaviour gets worse.

"My child is crying out for help, he has got very complex needs, but the council insist they can meet them at home so they can stay within their own costs."

Daughter Shreya, who is studying for her A-Levels, added: "He lashes out when he gets bored and frustrated. Once I came back from work to find him all bandaged up after he put his hand through the glass in our kitchen door. He doesn't know his own strength. It's hard as he can be a danger to himself and other people."

The family's battle with the council began in the late 1990s before Davinder's condition was properly diagnosed.

In his early years, Davinder was placed in special schools in Beckenham, but the family received no extra support even though at the age of 10, Bromley's Social Services classified them as "a family in crises requiring urgent help".

But throughout his life, he has not been assigned a social worker.

Mr and Mrs Sophal commissioned two independent reports from a psychologist and paediatrician and he was formally diagnosed.

They recommended that he had 24-hour care at a specialist institute, none of which were available in the borough.

But the reports were "totally disregarded" according to the family, yet the council insisted that they were meeting the needs of Davinder.

In 2000, former Director of Education at Bromley council Ken Davis offered the family compensation and costs of £400 and "apologised unreservedly" after finding evidence of "confrontational and dismissive" communication with the family and promised to reassess their case.

But they have never received the compensation and the council went on to oppose their appeal a year later forcing them to go to the High Court.

In 2001 the family won the case securing a place for their son at Bladon House School in Burton on Trent, that specialises in moderate to severe learning disorders.

But when the summer term ended in July, Bromley council had not found an alternative adult placement for Davinder instead offering the family three weeks respite care.

However, at the time of going to press, there has been no confirmation of any full-time placement for Davinder and Bromley council has not contacted the family with an offer of a placement.

Mr Sohpal, who has taken time off work to battle with the council, claims that the council should have started Davinder's transition into adult social care three years ago.

Mr Sohpal said: "We are again experiencing the same treatment we received when we battled with the borough 11 years ago.

"The pressure of it all is pushing us to breaking point. The doctor has put my wife on tablets for her heart condition. I have to work to keep the house and she is alone with him.

"He needs help bathing and going to the toilet, he wets the bed and he can get physically aggressive. I don't know how long she can cope, but nobody listens to us.

"They haven't even paid our compensation from nearly 10 years ago, but it is not about the money - that is minimal compared to what we have paid out.

"We have been battling them all his life, for nearly 20 years, and they still haven't learned any lessons."

A spokesperson for Bromley council said: "The council is not disputing Davinder's need for residential care and as a priority we are working with the family to find a viable long term placement for him.

"In the meantime we have offered an interim placement that meets his care needs, whilst other options are being explored. We are also exploring the options available to support his education needs locally at a specialist college, which would be backed up by respite care during holiday periods. Respite and 24-hour domiciliary care has also been offered.

"The council does not disagree with the benefits that Davinder would gain from access to continuing educational support, however, because the council does not have funding for such education it must ensure this takes place within an establishment supported by Learning and Skills Council funding.

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