A New Brunswick mother whose adult son is on the autism spectrum says the system is ‘broken.’
Cheryl DesRoches, the mother of 22-year old Ryan Hebert, says the challenges of caring for him spiked after he turned 18, and she’s calling for change.
Hebert is high-functioning, lives on his own and works a part-time job, but DesRoches says that’s where the line is drawn.
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“Ryan works during the winter, 15 hours, and during the summer, 20 [hours]. But, we have to kind of play the system because if he works more, his monthly cheque goes lower and his N.B. Housing [rent] goes higher.”
It was simpler before he became an adult, she says, when there were no issues with her speaking on her son’s behalf. Since then, the red tape and paperwork are part of the reason she says her son will never be fully independent.
“When you apply for social assistance, their mandate is for [people] to be out of the program. But our child, who’s on disability, will never be out of that program; they’ll always have a need,” DesRoches says.
“They make it very difficult. On the 21st of every month, we need to submit all the paystubs that Ryan [earned]. At the end of the month, if he had a little relief time from a support worker, I have to fill out the form.”
She met Dorothy Shephard, the province’s social development minister, last week to voice some concerns, suggesting people with disabilities should fall under a different department or system.
Still, she says her message isn’t getting through.
“If [people living with a disability] would be under another department, I think this person would know Ryan, personally,” she says.
“He would not only be a number and I find that [Social Development] lacks client services.”
DesRoches says she’s losing hope in the provincial government.
“I don’t think my hope is [government] making the changes; my hope is someone else will reach out to me or reach out to a person that will work together,” she says.
Bernard Richard, the province’s former ombudsman and child and youth advocate, says he’s frustrated with systemic issues that he voiced concerns about more than a decade ago. He says parents essentially have to be experts on all kinds of issues to support kids with disabilities.
“Services are not client-centred,” Richard says.
“There were then — 10, 15 years ago — and there are still now numerous examples of that happening every day for parents with children, but also with adult children with special needs.”
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In an emailed statement to Global News Tuesday, Minister Shephard acknowledges red tape needs to be reduced.
“I will be following up with staff to see if there’s something that can be done to relieve the administrative burden parents sometimes face,” the statement says.
DesRoches is frustrated, but she’s not stopping her fight anytime soon.
“I won’t,” she says. “I won’t give up.”
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