Track­ing autism in New­found­land

New agree­ment be­tween prov­ince, fed­eral agency could help im­prove ser­vices and re­sources

The Gulf News (Port aux Basques) - - Front Page - BY BRYAN TAIT

An agree­ment be­tween the pro­vin­cial gov­ern­ment and the Pub­lic Health Agency of Canada to cre­ate a na­tional autism surveil­lance sys­tem is a step in the right di­rec­tion, ac­cord­ing to two ad­vo­cates in Port aux Basques.

Joan Chais­son and April Bil­lard co- founded Autism In­volves Me, a sup­port group for fam­i­lies with chil­dren di­ag­nosed with autism spec­trum dis­or­der (ASD).

Chais­son said the sys­tem could be a valu­able tool to de­ter­mine how many peo­ple in the prov­ince are on the spec­trum.

“When we asked how many chil­dren there are on the is­land ( on the spec­trum), the only stats they had were for St. John’s,” Chais­son said.

She said there should be more data avail­able based on chil­dren who do an ap­plied be­hav­iour anal­y­sis be­fore they go to school.

“That’s gov­ern­ment-paid, so how can they not know even how many are tak­ing part?” she asked.

Bil­lard said hav­ing data would help make the case for more re­sources in a par­tic­u­lar area.

She said it’s dif­fi­cult to ar­gue suc­cess­fully for more sup­port staff in a school if there aren’t num­bers to back it up.

“For ex­am­ple, when they give out re­sources for schools, it’s al­ways based on pop­u­la­tion,” Bil­lard said.

She said needs-based as­sess­ments would lead to bet­ter dis­tri­bu­tion of re­sources, and this new sys­tem could help sup­port those cases.

Ac­cord­ing to a joint press re­lease from the De­part­ments of Ed­u­ca­tion and Early Child­hood Devel­op­ment and Health and Com­mu­nity Ser­vices and the Autism So­ci­ety, the sys­tem was de­scribed as al­low­ing the shar­ing of in­for­ma­tion provin­cially and na­tion­ally.

Ed­u­ca­tion Min­is­ter Dale Kirby said the agree­ment, which has al­ready been signed by three other prov­inces and one ter­ri­tory, will en­sure ac­cess to the most up- to- date and ac­cu­rate in­for­ma­tion to sup­port the gov­ern­ment’s de­ci­sion-mak­ing process.

The ob­jec­tives of the agree­ment are to es­ti­mate the num­ber of chil­dren and youth who have ASD, track the in­ci­dence and preva­lence of ASD within school- aged chil­dren and youth, de­scribe the ba­sic char­ac­ter­is­tics of chil­dren and youth with ASD and pro­vide ASD es­ti­mates to help sup­port pol­icy, pro­gram and ser­vice devel­op­ment.

Ac­cord­ing to the re­lease, in­for­ma­tion gath­ered and shared with the Pub­lic Health Agency of Canada won’t in­clude per­sonal in­for­ma­tion that could iden­tify in­di­vid­u­als.

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