The social and economic needs of families with a disabled child are high, but remain largely unmet, argue researchers in this week's BMJ.
More disabled children and young people live in the UK than ever before (about 770,000 according to criteria defined in the Disability Discrimination Act) and the number of children with the most severe or complex needs is also increasing, write social policy experts from the University of York.
More than half of families with disabled children live in poverty, yet the costs associated with bringing up a disabled child are estimated to be three times those of bringing up a non-disabled child.
The child's care needs also affect parents' ability to work. State benefits are the sole source of income for 90% of lone parent families with a disabled child, but current benefits do not meet the additional outgoings associated with having a disabled child.
Parents with disabled children also have higher levels of stress and lower levels of wellbeing than parents with non-disabled children. Many parents report that they want but do not receive help to deal with the sources of stress.
Most families also report problems with housing, equipment, and a shortfall in services that provide short term breaks from caring.
How can primary care trusts respond to these issues, ask the authors?
They can ensure that workers are aware of the needs of disabled children and their families. They can make sure that families are offered a key worker, that families' needs are assessed, and that appropriate interventions are available in their local area.
Primary care trusts can also promote strong multiagency working and commissioning of services for disabled children. They can also ensure that the needs of disabled children and their families are central to the agendas of children's trusts and that housing and leisure agencies are included in plans to meet these needs, they conclude.
Families with disabled children BMJ Volume 333 pp 928-9
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