DIS­ABIL­I­TIES TAK­ING TOLL

Gret­zky’s bill aims to ex­tend sup­port to fam­i­lies

Windsor Star - - FRONT PAGE - DOUG SCHMIDT [email protected]­media.com

When Wind­sor’s Gre­gory Roche­leau turned 18 last month, there was cake and a cel­e­bra­tion — but his pas­sage into adult­hood also trig­gered be­hind-the-scenes tears and panic for his sin­gle-par­ent mom. “Deep down in­side, I was very sad. I felt over­whelmed,” said Mary Beth Roche­leau.

Gre­gory has se­vere autism and re­quires con­stant care. But in On­tario, once chil­dren with de­vel­op­men­tal dis­abil­i­ties who have been re­ceiv­ing pub­licly funded sup­ports and ser­vices turn 18, that as­sis­tance ends abruptly.

“It’s to­tally cruel,” said Roche­leau. “On my son’s 18th birth­day, his sis­ter and I took a $7,000 fi­nan­cial cut.”

There are fi­nan­cial sup­ports for On­tario fam­i­lies of adult chil­dren with dis­abil­i­ties, but there’s a long wait­ing list, and it’s cur­rently at 14,000 names and grow­ing, ac­cord­ing to Wind­sor West MPP Lisa Gret­zky.

Roche­leau said some fam­i­lies have learned they could be with­out such as­sis­tance for up to six years. In her on­line sup­port group, which de­tails the phys­i­cal, emo­tional and fi­nan­cial toll on fam­i­lies, she’s heard of some who have given up homes to pay for con­tin­ued ser­vices, as well as of par­ents who have di­vorced or dived into de­pres­sion and be­come sui­ci­dal.

“It’s life-chang­ing — this is a huge, huge deal,” said Roche­leau. “As the kids get older, the care gets heav­ier, and then, when you need it most, they pull it away.” In se­vere cases of autism, as with her son, she said care­givers must be spe­cially trained and qual­i­fied, and she now has to cover care­giver costs of up to $22 an hour while she’s work­ing. A sin­gle mother of two and pro­fes­sional nurse work­ing full-time, Roche­leau said she doesn’t have ben­e­fits, em­ployed by a temp agency in or­der to have flex­i­ble hours.

“It’s so stress­ful — there’s a huge gap that peo­ple are fall­ing into,” said Gret­zky.

Once a child is di­ag­nosed with such a dis­abil­ity, she said it’s a con­stant fight to get and main­tain the nec­es­sary sup­ports and ser­vices. “And then, when their child turns 18, the par­ent is blind­sided.” Gret­zky, the NDP’s com­mu­nity and so­cial ser­vices critic, has in­tro­duced a pri­vate mem­ber’s bill, Noah and Gre­gory’s Law, aimed at elim­i­nat­ing wait times for peo­ple with de­vel­op­men­tal dis­abil­i­ties once they en­ter adult­hood. She said it was sched­uled for sec­ond read­ing in the Leg­is­la­ture next Thurs­day but the Pro­gres­sive Con­ser­va­tive gov­ern­ment ended the cur­rent ses­sion a week early. The tar­get date now is Fe­bru­ary 21. The bill is named af­ter the adult sons of Roche­leau and fel­low Wind­sor de­vel­op­men­tal dis­abil­i­ties ad­vo­cate Michelle Helou, whose child Noah also has se­vere autism, which is a com­plex med­i­cal con­di­tion.

“If this bill passes, it would be mon­u­men­tal for in­di­vid­u­als with dis­abil­i­ties and their fam­i­lies,” Helou said at a news con­fer­ence Fri­day at Gret­zky’s Wind­sor con­stituency of­fice. Roche­leau has been fight­ing for years to get the prov­ince to do more to sup­port fam­i­lies of adult chil­dren with dis­abil­i­ties, in­clud­ing one emo­tional town hall ex­change in Wind­sor ear­lier this year with then-premier Kath­leen Wynne. The Liberal leader promised to do more, but her gov­ern­ment was de­feated a few months later. Given past state­ments by the Tories — be­fore they formed gov­ern­ment in June — rec­og­niz­ing the need for more sup­port for those with autism, Gret­zky said she’s con­fi­dent of sup­port for her pro­posed leg­is­la­tion. Roche­leau said there’s an on­line pe­ti­tion — #MyVoteCounts — and let­ter-writ­ing cam­paign by the PAD Par­ents of Adults with Dis­abil­i­ties Ad­vo­cacy and Sup­port Group, both on Face­book, that she hopes will help gar­ner sup­port among MPPs for Gret­zky’s bill. “It’s not just me — there are thou­sands of other fam­i­lies in On­tario,” she said.

DAN JANISSE

Michelle Helou, left, with son Noah, and Mary Beth Roche­leau with son Gre­gory, at a news con­fer­ence Fri­day where MPP Lisa Gret­zky talked about her new pri­vate mem­ber’s bill — Noah and Gre­gory’s Law — that seeks to elim­i­nate wait times for those with de­vel­op­men­tal dis­abil­i­ties.

Lisa Gret­zky

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