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Families of children with complex healthcare needs are not getting the support they need according to a report by S...
Families of children with complex healthcare needs are not getting the support they need according to a report by Shared Care Network out in Share the Care Week (22-28 September).

The report, 'Too Disabled for Care?' shows that a high proportion of disabled children (21%) waiting for short break care have complex healthcare needs. In addition thousands of children are not being referred by social workers, as they know there is so little chance of them receiving a service. 41% of schemes surveyed said they were aware of such children.

The report also shows that many children are being referred to residential care despite government guidance, which says that disabled children should be cared for at home where possible. It also shows that schemes are struggling to place children with complex healthcare needs due to a lack of short break carers as well as a lack of funding to adapt properties and for equipment and training.

Sue Mennear from Shared Care Network said: 'This survey shows that the MORE disabled a child is the LESS likely they are to get a service. It shows that the right to communicate, the right to independence, the right to develop friendships and relationships and to participate in ordinary leisure and recreational activities is being denied many children with complex healthcare needs.'

Short break services are the most popular support service requested by families of disabled children. Disabled children are linked with families or individuals who can give them with regular short-term care. Short breaks help families of disabled children to cope - giving parents a break from caring and providing badly needed opportunities for disabled children to access community life.

Lorraine Butcher is the mother of a two year old with all-round developmental delay and Gastroscitis which means he has to be tube-fed. She said,

'It gives me time for myself which is hard to get because Graham needs 24 hour care. It also gives my other children a break so we can do things we can't do with him because of his medical needs eg swimming. He enjoys being with Jan and her children and the company of their pet dog which is a new experience for him.'

The report is being launched in Share the Care Week, the national recruitment campaign to encourage more people from all ages and backgrounds to 'Give a little time and make a BIG difference' to the lives of families in their area by becoming a short break carer. The campaign stresses that short break carers are ordinary people who provide disabled children with regular short-term care involving them in activities at home and in the community. They are paid an allowance for their time and are provided with appropriate training.

Ms Mennear said:

'Being a short break carer can be very rewarding. Short break carers get a huge amount of satisfaction of looking after these children. If you can share a few hours a month with a disabled child then there are plenty families out there who need your support'.

The recruitment campaign is being backed by the Department for Education and Skills (DfES) and is being launched by the minister for children Margaret Hodge who is visiting the family of a child with complex healthcare needs today to find out what having a break means to them and their family.

During Share the Care Week the minister will be helping national charity Shared Care Network launch a week of activity to recruit more short break carers to support families of children with complex healthcare needs.

Ms Hodge said:

'We want to ensure that all parents get the support they need to give their children the best start in life. We plan to do this by improving the universal services that every family use and by providing more targeted and specialist support to families in need of it.

'Short breaks help families of disabled children to cope - giving parents a break from caring and providing more opportunities for disabled children to access community life. We have earmarked specific f unding to increase the provision of short-term breaks and I am delighted to support this campaign to recruit more carers to support families with disabled children.'

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