Joy and re­lief as Evan’s ser­vices are ap­proved

DE­LIGHTED MOTHER BE­LIEVES ‘PEO­PLE POWER’ PLAYED PART IN DE­CI­SION

Wexford People - - NEWS - By ANNA HAYES

THE MOTHER of two teenagers with se­vere in­tel­lec­tual dis­abil­i­ties has ex­pressed her re­lief at re­cent news that her 18-year-old son will re­ceive a respite pack­age and a day­care pack­age from Set­pem­ber, as well as in­terim respite be­tween now and then.

Jane John­stone spoke out in April fol­low­ing a num­ber of un­suc­cess­ful meet­ings with the HSE to plead her case for th­ese im­por­tant ser­vices for her son Evan. She was also fac­ing the prospect of los­ing a €30 weekly pay­ment that Evan was re­ceiv­ing from his late fa­ther Rod’s pen­sion.

Evan suf­fers from se­vere in­tel­lec­tual dis­abil­ity, autism, and also a sight con­di­tion which leaves him with only 50% vi­sion.

While the respite pack­age had been con­firmed ear­lier, Jane said they had gen­uine con­cerns about last un­til Septem­ber given the change in Evan’s de­meanour since the be­gin­ning of May, when he was cut off from the ser­vice. She posted her con­cerns on so­cial me­dia and says she was blown away by the re­sponse she re­ceived.

‘Peo­ple wanted to know how they could help, oth­ers were go­ing through the same sit­u­a­tion. But for me, it was peo­ple say­ing ‘we want Evan in our com­mu­nity’ and that meant a lot be­cause we did feel very alone.’

She added that respite was a huge part of Evan’s life and he was hurt and con­fused when it stopped: ‘All of the peo­ple who had been in his life were sud­denly gone. He wasn’t sleep­ing and be­came very with­drawn in school.’

How­ever, last Thurs­day, Jane re­ceived word that she had been granted in­terim respite care for Evan as well as a day­care pack­age that will be­gin in Septem­ber. In ad­di­tion to that, when she rang to in­quire about the loss of pay­ment un­der her late hus­band’s pen­sion, she was told the let­ter was a mis­take and that Evan would re­ceive the pay­ment for the rest of his life.

‘Ev­ery­thing hap­pened on Thurs­day and I be­lieve peo­ple power had a lot to do with it. My post on Face­book was shared 600 times. Who’s to know where it went or who saw it?’

She said they were ex­tremely re­lieved and grate­ful that ser­vices had been made avail­able for them.

Heart­ened by the re­sponses she re­ceived, Jane plans to hold a meet­ing in the near fu­ture for par­ents of kids with dis­abil­i­ties to dis­cuss the var­i­ous is­sues fac­ing peo­ple.

‘We need to keep high­light­ing th­ese is­sues be­cause they’re not just about me and Evan but so many other peo­ple. There are peo­ple who can’t fight, whose sto­ries we never hear be­cause they fall off a cliff some­where. We need to keep talk­ing about this is­sue and maybe we can make a dif­fer­ence.’

Jane John­stone with her son Evan.

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