Terminally ill man's long wait for home care package

Home care - a system of false hopes

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TORTUOUS ROUTE: A terminally ill man in the ACT has waited more than two years for a home care package. Image: Shutterstock

TORTUOUS ROUTE: A terminally ill man in the ACT has waited more than two years for a home care package. Image: Shutterstock


Frail and sick are dying before they get a home care package.


AFTER being diagnosed with a terminal illness, ACT retiree Philip* applied for a home care package. That was almost two years ago: he's still waiting.

The 76-year-old former senior public servant needs 24/7 oxygen and can only walk slowly. Dressing, showering or any physical exertion makes him breathless and cyanosed due to lack of oxygen.

Mostly his brain is fine unless he has a build up of fluid or is unwell, in which case not enough oxygen gets to his brain and he becomes forgetful or muddled. He can be left at home for short periods but has had a couple of falls.

Two years ago the specialists at the Royal Prince Alfred Hospital in Sydney (Canberra doesn't offer the medical care needed) told Philip and his wife Julie* (71) to prepare for his death - to let the family know and put everything in order, which they did.

But thanks to treatment Philip's condition has been reasonably stabilised.

With the exception of three hours of Commonwealth Home Support, which provides two showers a week and some vacuuming, Philip is cared for by Julie.

The self-funded retirees live on a small hobby farm outside Canberra. Philip wants to live, and die, at home, but for that he needs the support of a home care package.

"The ACAT assessor put him down as a level three because it might come up quicker and still give sufficient help," Julie said.

"This level was approved and we were told it could be up to a year before a package became available.

"It's now well over 18 months since we were assessed so I rang My Aged Care.

"They noted my husband was high priority and said that it would most likely be another 18 months before a package became available."

Julie, who has been diagnosed with carer stress, describes the system as one that "raises false hopes that are repeatedly minimised and-or dashed as we trudge along this tortuous route called 'ageing in place' and aged care packages".

At the end of March more than 129,000 people were waiting for a care package at their assessed level.

Most of these (75,739) had not been offered any home care package - even at lower level - although many were able to access some assistance through the entry level Commonwealth Home Support Program.

Some people on the waiting list (53,299) were offered a home care package below the level they have been assessed as needing. Of these, 30,283 had taken up the lower package, 6355 were still deciding and 16,661 had not taken up an offer for lesser support.

More than 13,000 people who were waiting for the highest level of care (level four) had not been offered any package.

A government spokesperson told The Senior there were processes in place to ensure that people with a high priority can get access to a home care package or other supports more quickly.

*Not their real names.

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