CRIES of the CARE WORN

New grants and sup­port groups will ease the load on par­ents of dis­abled chil­dren. But crit­ics say car­ers of older chil­dren are over­looked, re­ports Lyn­nette Hoff­man

The Weekend Australian - Travel - - Health -

COM­PARED to many par­ents of chil­dren with dis­abil­i­ties, An­drea Day counts her­self rather for­tu­nate. Her daugh­ter, Sofia, was born with Down syn­drome and has ex­pe­ri­enced many of the phys­i­cal prob­lems that go with it, such as a weak­ened im­mune sys­tem that makes her more sus­cep­ti­ble to sick­ness, and breath­ing dif­fi­cul­ties and con­ges­tion linked to the nar­rower pas­sage­ways in her ears, nose and throat.

But all in all, she’s health­ier than many other chil­dren with her con­di­tion. She doesn’t have com­pli­ca­tions such as heart prob­lems, which are com­mon and of­ten re­quire surgery.

Sofia is a ‘‘ vi­va­cious and en­er­getic’’ three­year-old, and Day’s fam­ily and friends have gone out of their way to be help­ful, stop­ping by to as­sist with iron­ing and cook­ing and other prac­ti­cal­i­ties, and be­ing sup­port­ive wher­ever they can.

Yet not­with­stand­ing all that, Day still re­mem­bers the enor­mous sense of re­lief she felt the day she took then nine-month-old Sofia to a play group where she un­ex­pect­edly met an­other mother who had a daugh­ter the same age with Down syn­drome.

‘‘ Even though I had all that sup­port I still felt iso­lated at times,’’ Day says. ‘‘ It was such a re­lief to have some­one who had an im­me­di­ate un­der­stand­ing. She was in ex­actly the same sit­u­a­tion as me and we could speak the same short­hand. I didn’t have to ex­plain things.’’

Par­ents of chil­dren with dis­abil­i­ties and other chronic health prob­lems of­ten find them­selves so­cially iso­lated and at greater risk of de­pres­sion and mar­riage break­downs. And the pres­sures aren’t con­fined to those with small chil­dren.

Late last month the Aus­tralian As­so­ci­a­tion for Fam­i­lies of Chil­dren with a Dis­abil­ity pub­lished an open let­ter to the Prime Min­is­ter on its web­site, in which it out­lined sev­eral ‘‘ un­met needs’’ — mainly linked to a lack of long-term ac­com­mo­da­tion and sup­port for adults with dis­abil­i­ties.

Three ex­am­ples cited in the let­ter, from a sin­gle three-week pe­riod about 18 months ago, in­cluded the cases of three fam­i­lies in Vic­to­ria who found the pres­sures of look­ing af­ter their dis­abled adult chil­dren so in­tense that they took ‘‘ the enor­mously dif­fi­cult de­ci­sion’’ not to take them back home af­ter check­ing them into tem­po­rary respite care. Two of the chil­dren, aged 17, and 32, had se­vere in­tel­lec­tual dis­abil­i­ties and autism, while the third, aged 24, had mul­ti­ple in­tel­lec­tual and phys­i­cal dis­abil­i­ties.

AAFCD chief ex­ec­u­tive Michael Gourlay said in the let­ter that the state Gov­ern­ment was obliged to as­sume re­spon­si­bil­ity for their care, which it did by turn­ing the respite cen­tre they had been in into long-term ac­com­mo­da­tion — re­duc­ing the num­ber of respite beds avail­able to ease the load on other fam­i­lies.

The 17 and 32-year-olds re­main in pub­lic ac­com­mo­da­tion, while the 24-year-old has since re­turned to spend half his time with his fam­ily.

The fed­eral Gov­ern­ment ac­knowl­edges that such par­ents need help. This week the gov­ern­ment an­nounced a five-year, $1.8 bil­lion as­sis­tance pack­age for dis­abled Aus­tralians and their fam­i­lies and car­ers to ad­dress some of th­ese is­sues. From Sun­day, fam­i­lies with a dis­abled child un­der 16 will re­ceive a $1000 tax-free pay­ment for goods and ser­vices to im­prove mo­bil­ity and qual­ity of life. In a state­ment, the Prime Min­is­ter said the Gov­ern­ment was aware that ‘‘ the level of un­met need for sup­ported ac­com­mo­da­tion and respite care is caus­ing dis­tress and worry for many car­ers’’.

The an­nounce­ment comes as an­other ini­tia­tive — a $9 mil­lion fed­er­ally funded move to set up more than 300 spe­cialised sup­port groups for par­ents with chil­dren un­der school age — is get­ting go­ing.

The first seven ‘‘ My­Time’’ sup­port groups, for fam­i­lies el­i­gi­ble for the Carer Al­lowance for chil­dren, were set up in April in Vic­to­ria, Queens­land and Tas­ma­nia. Eighty more were launched this month in West­ern Aus­tralia, South Aus­tralia and NSW, with the roll-out con­tin­u­ing through 2010.

While var­i­ous sup­port groups al­ready ex­ist around Aus­tralia on an ad-hoc ba­sis, this is the Con­tin­ued inside, page 17

Pic­ture: Michael Pot­ter

Time out: An­drea Day, left, with neigh­bour Jac­que­line Comen­soli and her chil­dren. When Day found a play group for chil­dren with dis­abil­i­ties, she dis­cov­ered much-needed sup­port

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