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Care package withdrawn for child with learning difficulties

A child with cerebral palsy and learning difficulties had his whole educational and community care package withdrawn by the local authority leaving his Mum to pick up the pieces.

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10 December 2003

The mother of a sixteen-year-old boy, with cerebral palsy, severe anxiety problems and behaviour that challenged services, was left with no extra help in caring for her son after the local social services authority refused to replace his care package. This happened after he had been excluded from several special schools and his community care support had broken down.

There has been a protracted legal battle to have the boy’s needs properly assessed and to obtain funding for his education, therapy and social care. Finally a care package is back in place that takes into account the exceptional level of his needs and acknowledges the respite requirements of his mother. Alison Millar, in the Human Rights Department of Leigh Day & Co., represented the family.

The case in full

The boy, who has cerebral palsy and learning difficulties, was suffering from severe anxiety following suspected abuse at the hands of his carers. He had been excluded from a number of special schools and his community care had been withdrawn due to the inappropriate and unprofessional behaviour of his carers.

Although it was recognised that it wasn’t his fault that the care package had broken down, the local social services felt that his needs were too complex for them to be able to manage his care.  This was after his mother lodged a formal complaint, under the Children Act, against the council and a panel upheld her complaints. She was given compensation for her situation, and the council accepted the complaint but nothing was done to remedy the underlying situation.

At this point Alison Millar in the Human Rights Department of Leigh Day & Co. was asked to get involved. A school was found that specialised in behavioural management. After a meeting with the education authority and social services, it was agreed that he could go, and that the education authority would fund a previous, trusted support worker to be with him at the school. However social services refused to fund the support worker for the child’s community care, claiming that the service was too difficult to coordinate and that the child was a health and safety risk.

Instead they offered to pay under £9/hour to his Mum to recruit and employ her own staff: “This figure was insufficient to pay for adequately skilled staff and if the experienced social services department felt unable to handle sorting out his care, how on earth did they expect his Mum to be able to recruit and manage it,” says Alison, “They had also cited health and safety problems but had failed to carry out a risk assessment.”

Alison sent a formal letter to the local authority to have the boy properly assessed, however the resulting assessment failed properly to identify his needs and the local authority continued to maintain the child could not be supported in the community.  In the meantime, he was making good progress at the school and in his relationship with his support worker. In fact, that support worker was also providing some community and social care, proving that this kind of care was possible if managed correctly.

Social services were asked to reconsider their assessment and at this point produced a new and complex protocol with which to determine the entitlement of disabled children in their area. This new method, which took into account the child, their family and environmental factors, indicated that his needs were only ‘medium’. This completely contradicted their earlier assessments, that his needs were so complex that they couldn’t manage them. The protocol was also flawed because it failed to take into consideration his Mum’s need for respite – she had not had a night off since 1998.

Legal proceedings were issued to challenge the policy and the local authority immediately withdrew the protocol for further consultation with the Council for Disabled Children.

At this point the boy’s sister, who was on holiday from university, was funded to provide care for him over the summer, but by October 2002 he was left with no care again. Legal proceedings were issued to demand funding for his original support worker to provide the community care he needed for the number of hours previously recognised.

But with the failure of the ‘entitlement protocol’, what were his actual needs? The social services agreed to jointly commission an independent, experienced social worker to assess the family’s needs. His report, published in March 2003, recommended a new way of working with the family that was led by their needs, not by looking at what resources were available.

In late June 2003 the local authority finally delivered their assessment, which was supposed to have taken into account the experts findings. Incredibly it was the same as the previous year’s assessment and paid no attention to the expert’s report. Mediation was suggested at this stage in the hope that the council would listen to the expert if he were there in person. This meeting was constructive and resulted in an agreement to provide extra support workers who would be trained by the school in behaviour management. His Mum would recruit the support workers but she would have help in doing this. They agreed to reassess him properly and the new assessment was a reasonable summary of his needs. For the first time it took into account the previous abuse and also recognised the needs of his mother as his carer.

As well as his new support workers being trained up, the authority is still funding his original support worker to allow for a period of hand over. This acknowledges that, due to his previous experience, he cannot be expected to adjust and trust new people straight away. His special needs statement is also being updated to name the school he goes to, and to allow for extra sessions of both physiotherapy and occupational therapy.

Alison Millar concludes: “At the beginning carers wouldn’t even come into his home because they thought it was too risky. Finally there is a care package in place that reflects his needs and the family can now look to the future.”

Information was correct at time of publishing. See terms and conditions for further details.

Information was correct at time of publishing. See terms and conditions for further details.

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