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Issue #1619      November 20, 2013

Children with complex disabilities in the too-hard basket

More intensive support is needed for carers of children with a severe intellectual disability and challenging behaviours. Anglicare Sydney’s latest research report voices the heartache of parents who find themselves struggling under the pressure of caring for their child.

Parents battle with physical and mental health problems; strained marriages; limited employment and career opportunities; and diminished finances. In fact, the demands of care giving under these circumstances have serious repercussions for the whole family.

Mary Lou, a participant in the study says: “The research Report makes for uncomfortable and confronting reading and challenges our policy makers to do better to meet the complex service needs of these vulnerable children and families.”

Current support services are inadequate for the level of care required for a child with severe to profound intellectual disability and challenging behaviours. Parents say that respite services are too infrequent or require requests well in advance which don’t take into account crisis situations or unscheduled events.

Parents’ anxiety about their child’s challenging behaviours and sleep deprivation, exacerbated stress levels, mental fatigue and physical exhaustion. Siblings spoke of feelings of shame, social isolation and reduced parental engagement.

The National Disability Insurance Scheme has the potential to meet these families’ specific, intensive needs. The report recommends that future government plans should include a shared care, residential educational model. Parents whose children have experienced this model reported significant benefits for their child with an intellectual disability and for the whole family unit.

The report recommends that:

  • The NSW government provide funding for a shared care, residential school model to give much needed respite to carers of children with severe intellectual disabilities, and their families.
  • The NSW government retain the block funding (in full or part) required by this model.
  • Under NDIS, the needs of the parent carers and siblings are assessed in addition to the person with an intellectual disability.
  • Federal and state governments provide funding to train staff with additional skills to work with children who have an intellectual disability with challenging behaviours.

Sue King, Director of Advocacy and Research said: “Government policy and disability services must accommodate the complex needs of children with severe intellectual disability and their families so no one is disadvantaged.”

Next article – Union wins reinstatement at Supreme Caravans

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