Car­ers de­mand long-term an­swers

The Weekend Australian - Travel - - Health -

hole for peo­ple aged 20 to 40, who have to rely on fund­ing un­der the CSTDA.’’

Un­der that agree­ment, she said the fed­eral Gov­ern­ment had been pro­vid­ing about 20 per cent of the fund­ing. How­ever, in some states in­clud­ing NSW, that share had re­cently slipped — to about 16 per cent in the case of NSW— be­cause the states have be­gun putting more money in.

The agree­ment ex­pired on June 30 and a new one is still un­der ne­go­ti­a­tion.

‘‘ The Com­mon­wealth has no new funds on the ta­ble — they are not even go­ing to keep up with in­fla­tion,’’ Clark said. ‘‘ What we need is a huge in­jec­tion of funds — we don’t care if the Com­mon­wealth or the states pro­vide the ser­vices, but it has to be at­tended to.

‘‘ We need per­ma­nent ac­com­mo­da­tion for peo­ple so se­verely dis­abled that they can’t look af­ter them­selves. You just can’t imag­ine the bur­den ev­ery day of look­ing af­ter your (dis­abled) child in the fam­ily home. You are talk­ing about grand­par­ents look­ing af­ter a 30-year-old son who weighs 80kg . . . they are still full-time car­ers for an 80kg-equiv­a­lent of a six-year-old child.’’

MaryLou Carter is sec­re­tary of a newly reg­is­tered po­lit­i­cal party called the Car­ers’ Al­liance, and its num­ber one Se­nate can­di­date in NSW. She was at last week’s demon­stra­tion: ‘‘ We are seek­ing a Se­nate seat, be­cause with­out a po­lit­i­cal voice, car­ers will con­tinue to be put on the back burner, boil­ing over and no-one do­ing any mop­ping up. There are al­ways so many other de­ci­sions and politi­cians ig­nore us be­cause they can, and do.’’

Carter has a se­verely in­tel­lec­tu­ally dis­abled 16-year-old son, who has had his dis­abil­ity since birth.

‘‘ When he was three, four and five, I didn’t have any idea of what was wait­ing for me, and what would be my fate,’’ she says. ‘‘ I started my own busi­ness, but for the last 16 years I have not been able to be part of that busi­ness. This is the story of so many peo­ple.’’

Clark says there are about 17,000 long-term ac­com­mo­da­tion places in Aus­tralia. If Aus­tralia had as many places per head of pop­u­la­tion as Nor­way and Swe­den — where there are no wait­ing lists for such ac­com­mo­da­tion — then Aus­tralia would have some­thing like 60,000 places, she says. ‘‘ We have to get up to 20,000 around the coun­try, but that will still only be one-third of what we truly need.’’

Pro­test­ers at last week’s demon­stra­tion did not ac­tu­ally sit down en mass inside John Howard’s of­fice, but in­stead trooped in one by one to pass their con­cerns and com­plaint to one of the Prime Min­is­ter’s staff. Clark said they had a ‘‘ very po­lite re­cep­tion’’.

Lob­by­ing: Car­ers protest­ing a lack of ac­com­mo­da­tion for se­verely dis­abled peo­ple seek a bet­ter deal in John Howard’s Gladesville of­fice

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