Respite programs for children with special needs are a lifeline for overtaxed families, parents and care managers said at a Cridge Centre for the family charity event this week.
“To have a night or a few hours away, to step out and breathe is beyond a gift,” said Ann Auld. “Without that, I know my own sense of self would become diminished.”
Auld is a single mother and runs her own tutoring business. Her teenage daughter, Zola, is outgoing and opinionated, she said, but also has some specific- care needs as a person with Down syndrome.
“It’s really important for a caregiver to have a matching sense of values,” she said. “I wish there were more and I wish they would stay longer.”
Auld’s feelings were echoed among parents who attended actor Kendrick Sampson’s birthday benefit for Cridge respite programs Sunday. The “respitality” program offers parents a free night’s stay via one of dozens of hotel partners in Victoria. Their respite care resource centre connects families with special-needs children and youth to experienced caregivers.
“We actively need at least 50 more care providers to draw from,” said Gyneth Turner, who co-ordinates the respite programs and keeps a database of families and care providers to help them match their needs.
She said there are about 150 families who use respite care and at least 60 actively looking for care providers.
“I imagine there are many more who face barriers that mean they never connect with our service,” she said, noting parents are responsible for interviewing, hiring and paying for respite care workers.
Wages range from $12 to $25 an hour, depending on the complex needs of the child. Some might have physical and behavioural issues but are still semi-independent. Others could have complex medical supports and need medication or a care worker with specific medical training.
Turner said the typical level of government assistance for family respite is about $200 a month, and that excludes kids with mental-health issues.
“Many families do not receive funds or are waitlisted to receive funds for years and must pay the entire cost themselves. This is a major barrier to any family who cannot afford to pay for care,” she said.
Because respite care work is generally lower paid and the shift work can be unpredictable, Turner said it often attracts a transient workforce such as health and child-care post-secondary students.
“This is valuable work,” she said, noting she tends to take on care providers who show a passion for the field.
“Parents need to know their child is safe and happy in order to enjoy a respite break,” Turner said.
“Youth in particular need a talented respite care provider to make age-typical activities and peer connections possible as they begin to need some independence from parental care and supervision.”
At the party, Laurie-Anne Keith was one of several parents to lament the loss of respite care programs like the one at Queen Alexandra Centre that also trained care providers.
“It’s hard to find highly skilled people,” she said. Her daughter Rae, 17, has complex needs and her current care provider is about to move on to other things.
“Ideally, we would have someone for four years — that would be beautiful,” said Eva Gil-Eldh, who also needs to find a new caregiver. Her daughter Aiyana Branyik uses a wheelchair, feeding tube, medications and gestures to communicate. The gentle nine-year-old shook her hands to the music and posed with her mom in the costume-photo booth.
“We had a nurse once and she could handle it. Others think they can but then they get scared,” Gil-Eldh said.
Zola Auld sits on a loveseat with her best friend, Cassidy Duncan-Graham, a 17-year-old with autism and a mellow personality. Their mothers, Ann Auld and Gina Duncan, look on from a distance.
“As [Zola] transitions from youth to adult life, I’m thinking more about a plan to help her follow her hopes and dreams,” Ann Auld said. “I’d like to see her working and living with friends, to have some interdependence so I can step back a bit.”
Most important, Auld said, she’d like to see her daughter surrounded by a community that supports her in all her resilience.
To learn more about the Cridge Centre for the Family, visit: cridge.org