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Survivors: Story update
Aja Riley (right), Emmy Myerson and Emmy's mother Tussie
Are families caring for disabled children being ignored?
Back in January 2003 Panorama followed two families struggling to care for disabled children at home as part of a special investigation into care provision for the severely disabled.

The programme reporter, Sarah Barclay, caught up with both families to find out if things have improved in the last six months.

When we last saw Emmy Myerson in January, her parents, Tussie and David, were waiting to hear whether Oxfordshire County Council and the local health authority would pay for Emmy to go to Penhurst School, a residential school for children with severe disabilities.

They believed that residential care outside the family home for Emmy was the solution which would benefit not just Emmy but the whole family.

Tussie and David believed that their other two children, Charlotte and Alex, were suffering because of the amount of time they were spending caring for Emmy.

This was not a decision they had reached lightly. It had taken them months, followed by months of discussion and disagreement with the council.

Health suffering

Shortly after the programme was broadcast, Emmy's health deteriorated.

She was admitted to Helen House, a children's hospice in Oxford and her parents were told to prepare themselves for her death, as they had done many times before.

And like many times before, Emmy rallied and came home. Shortly after this, her parents were told that Oxfordshire County Council had decided not to pay for a place at Penhurst School, but they say they have never been given an official reason for this decision.

Six months later, Oxfordshire County Council has agreed to make what are known as Direct Payments to the Myersons, which means that instead of the Council paying for Emmy's carers, the same amount of money has been given to her parents to find and pay the carer direct.

This arrangement means the Myersons are able to pay for an extra 10 hours a week of care for Emmy out of the same budget. This is because, unlike the Council, the Myersons do not have to pay overheads, agency costs and so on.

The carer arrived 10 days ago and now lives with the family, looking after Emmy for an hour in the morning and from 15.30-19.00 every evening so that Emmy's parents have time to spent with their other two children.

When I spoke to Tussie last week she said that for the first time, she and David had been able to go to two of Charlotte's school events without worrying about who would look after Emmy.

Emmy's school now also employs a full time nurse so that if Emmy becomes ill during the school day, she can be cared for at school instead of Tussie being asked to collect her and take her home.

"It is progress, in many respects," Tussie said. "But we still don't have access to nursing care if Emmy is ill at home or during the night, or during the holidays."

They have recently received a written promise that the number of hours of care that Emmy is entitled to will never be reduced.

When we last saw Barbara Riley and her daughter, Aja, at the end of January, they had just moved house and Aja had spent her first night away, staying with a local foster family.

Respite care

After months of waiting, Barbara had been allocated one night's "family-based" respite care.

Although she was pleased to have one night a month off, she was disappointed because where the family used to live, in Hampshire, Barbara was entitled to one weekend off a month.

As she gets almost no additional care for Aja in the home, Barbara is responsible for her 24/7 and now her own health is suffering.

Just before the programme was broadcast, we learned that because Barbara had been given one night a month respite care for Aja, the council was considering reducing the eight hours a month "relief to care" - equivalent to babysitting - she was entitled to but rarely received.

However this has not happened. Barbara has saved up a total of 24 hours of care which she hopes to receive during the summer holidays.

She has also been told that Aja can have up to 12 hours at a summer Playscheme funded by Oxfordshire County Council.

Panorama: What Happened Next? will be broadcast on BBC One on Sunday, 13 July, 2003 at 2215 BST.

Panorama: Survivors was broadcast on Sunday, 26 January 2003.

Panorama: What happened next?


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