Cries of care worn an­swered

The Weekend Australian - Travel - - Health -

From Health cover first na­tion­ally co-or­di­nated ini­tia­tive to sup­port par­ents at a grass-roots level. The My­Time groups are also more struc­tured than many ex­ist­ing groups; each has a fa­cil­i­ta­tor, who, along with or­gan­i­sa­tional du­ties, works to break the ice and help par­ents who may be a bit shy to feel more com­fort­able. Fa­cil­i­ta­tors also dis­cuss ev­i­dence-based in­for­ma­tion and help link par­ents in with other ser­vices al­ready in their area that they may not be aware of.

The groups also have a ‘‘ play helper’’ who or­gan­ises ac­tiv­i­ties for the chil­dren while the par­ents are meet­ing, al­low­ing car­ers a much­needed break, ac­cord­ing to Day, who fa­cil­i­tates one group in Melbourne and at­tends an­other as well.

There’s lit­tle doubt that such sup­port is ben­e­fi­cial, says Pro­fes­sor Gwyn­nyth Llewellyn, dean of the fac­ulty of health sci­ences at the Univer­sity of Syd­ney.

‘‘ There’s a nat­u­ral hu­man de­sire to share and to lis­ten, and we know from the re­search that it’s em­pow­er­ing, and that peo­ple who have ac­cess to good so­cial sup­port are health­ier, both men­tally and phys­i­cally,’’ Llewellyn says.

‘‘ What is new is that the fed­eral Gov­ern­ment is con­tribut­ing a sig­nif­i­cant amount of money to make sure th­ese groups are sus­tain­able.’’

Of­ten sup­port groups fiz­zle out when the key or­gan­is­ers run out of en­ergy, or no longer feel they need as much sup­port them­selves. Many groups also rely on ‘‘ soft fund­ing’’ from grants that need to be reg­u­larly reap­plied for, so they are vul­ner­a­ble to dy­ing off, Llewellyn says.

Dif­fi­culty in ac­cess­ing sup­port in the early years re­flects a wider short­age in sup­ported early in­ter­ven­tion ser­vices in gen­eral, says doc­tor Tim Moore, se­nior re­search fel­low at the Cen­tre for Com­mu­nity and Child Health at the Royal Chil­dren’s Hospi­tal in Melbourne.

Once a child is di­ag­nosed with a dis­abil­ity they are el­i­gi­ble to ac­cess a range of ser­vices, in­clud­ing as­sess­ment by a mul­tidis­ci­plinary team that can in­clude so­cial work­ers, psy­chol­o­gists, oc­cu­pa­tional ther­a­pists and spe­cial ed­u­ca­tors, among oth­ers.

They can help place a child in school, de­velop ac­tion plans, help par­ents learn ap­pro­pri­ate skills — and they also run sup­port groups. Most of those ser­vices are run by small non-gov­ern­ment agen­cies, and at the mo­ment they aren’t able to sus­tain de­mand.

‘‘ There are hun­dreds of chil­dren on wait­ing lists in Vic­to­ria — of­ten they may be wait­ing for 12 to 18 months to ac­cess ser­vices — the num­ber of places funded is about 20 per cent less than the num­ber of chil­dren who need those ser­vices,’’ Moore says. Sim­i­lar trends are ev­i­dent across Aus­tralia.

‘‘ We want to di­ag­nose kids ear­lier, but then we haven’t got the re­sources to sup­port them so we’re leav­ing fam­i­lies try­ing to man­age on their own.’’

Moore and Llewellyn say the My­Time groups are an im­por­tant step that shouldn’t be di­min­ished or un­der­es­ti­mated — but just how far the fund­ing will go to­ward ad­dress­ing the gaps in sup­port isn’t clear. Both say bet­ter plan­ning and con­sul­ta­tion with key re­searchers and groups could have made the fund­ing even more rel­e­vant.

Among their con­cerns is the lack of on­go­ing sup­port avail­able as chil­dren grow older and hit var­i­ous tran­si­tional phases in their lives, such as en­ter­ing pri­mary school and high school, and leav­ing school.

‘‘ The ma­jor thrust of ser­vice de­liv­ery is aimed at fam­i­lies with young chil­dren, but par­ents need sup­port even more as their chil­dren get older,’’ Llewellyn says.

‘‘ That’s when you see greater dif­fer­ences be­tween them and other chil­dren, and the pres­sures in­crease as par­ents have to con­tin­u­ally adapt. Very few par­ents re­lin­quish their chil­dren in the early years, but there is a marked in­crease in par­ents plac­ing child out of home as the child reaches eight or nine.’’

Yet there’s ‘‘ a ma­jor drop off’’ in ser­vices and sup­port as chil­dren reach school age.

Sev­eral sto­ries il­lus­trat­ing the im­pact of that drop-off are cited in the let­ter by the Aus­tralian As­so­ci­a­tion for Fam­i­lies of Chil­dren with Dis­abil­i­ties, but there is also the story of dis­tressed par­ents who ‘‘ have been urged by med­i­cal prac­ti­tion­ers to max­imise their child’s life chances by im­me­di­ately seek­ing early in­ter­ven­tion sup­port ser­vices’’ — only to be told their three-year-old faces a 12-month wait.

To that end AAFCD chief ex­ec­u­tive of­fi­cer Michael Gourlay says that while lots of ar­eas are in need of more fund­ing, early in­ter­ven­tion sup­port pro­grams are no less de­serv­ing.

‘‘ There’s an ur­gent need for peer sup­port dur­ing the early years — it’s money well spent,’’ he says.

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