Joy and relief as Evan's services are approved
Delighted mother believes 'people power' played part in decision
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 September, 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 He wasn't sleeping and became very withdrawn in school.'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.'