Luke Still Waiting For Hoist To Lighten Load

Illawarra Mercury

Monday September 29, 2008

By KATELIN McINERNEY

PAM Pawsey remembers when she could cradle her grandson Luke in the crook of one arm.

Although no-one could call the severely disabled 13-year-old well built, he's become too much for the 78-year-old to handle.

When her husband Ray, also 78, was admitted to hospital a fortnight ago, Mrs Pawsey found herself, for the first time, unable to care for Luke, who has the rare degenerative central nervous system disorder Pelizaeus-Merzbacher disease (PMD).

"I went in to find Ray collapsed on the bathroom floor and called the ambulance, but he had to travel to Wollongong in the ambulance and go in for surgery on his own because I couldn't leave Luke here," she said.

Mrs Pawsey had no other option than to put her grandson in respite care for the past week.

The Department of Aged, Disability and Home Care (DADHC) has been providing assistance to the family for seven years.

But without Ray to lift Luke, the helpers were unable to provide their usual service for the Pawseys due to OHS restrictions.

Pam said the family had been given a mobile hoist for Luke in 2003, but had never used it as they did not receive the correct size sling to fit Luke's tiny frame and had experienced difficulty manoeuvring it around their Albion Park home.

A spokesperson for DADHC said Luke's caseworker had applied to the South East Sydney Illawarra Area Health Service for a ceiling hoist that would allow his carers better movement in February.

However, when Ray landed in hospital and the ceiling hoist had not arrived, Mrs Pawsey tried to find out what was happening.

"I was told it was in, but that they weren't sure they had the funding to install it," she said.

Mrs Pawsey called on KidzWish Foundation executive director Chris Beavan to make inquiries and Ms Beavan said she had been assured the ceiling hoist would be installed next week.

"It is obvious that the current system is not working," Ms Beavan said. "KidzWish have just provided Luke with a new, purpose-built $9000 lounge chair to relax in at home, and it took us just seven weeks from order to delivery to have it shipped out from England."

The DADHC spokesperson said a temporary service would be provided by Wollongong Community Options until Home Care's service begins.

© 2008 Illawarra Mercury

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