Winnipeg mom pleading to get care home placement for son with disabilities 'before it's too late'
Rachel Lenz says she's been trying for 16 months to get 10-year-old into supervised residential care home
A Winnipeg mother of a child with disabilities is pleading to get her child the help he needs in a residential care home, but after more than a year of trying says there's still no hope in sight.
Rachel Lenz says her 10-year-old son, Bentley, needs more support than he currently has at home. He is on the autism spectrum and has been diagnosed with epilepsy, anxiety and obsessive-compulsive disorder. A part of his medical diagnosis is that he doesn't feel pain the way most people do, making self-injury easy for him.
"Right now he's going through a difficult stage," she said. "There's a lot of pinching, biting, kicking, yelling, 'I hate you,' throwing things."
Lenz, who has six children, says she's "so consumed with making sure that his medical needs and his regulation needs are taken care of, I don't have time to be a mom."
"And I miss being his mom."
As a certified health-care aide and a social services worker, Lenz said she knows how to care for her son but can't do it alone.
She's been in contact with Manitoba's Department of Families for the past 16 months, trying to get Bentley into a 24/7 supervised residential care home, she said, but has yet to find a placement for him.
A provincial spokesperson for the department said in an email that Manitoba has 25 licensed beds for children with disabilities and 201 beds for children with high-level needs, along with "several standalone licensed facilities that are not included in the 25 bed count."
But the spokesperson did not specify how many of those standalone facilities offer care for children with disabilities versus beds for kids with high-level needs.
Burning out
Dominique Chabot, a family support worker with the non-profit Autism Canada, says raising a child with multiple diagnoses "is extremely difficult for a caregiver."
"Residential support for complex behaviours may be her only option," Chabot said in an email.
People on the autism spectrum often have co-occurring conditions, making it crucial for treatment plans made on a case-by-case basis, she said.
Bentley needs a perfect fit, his mom says, including a safe home that is tailored to his needs and where he's a match with the other children in the house.
The provincial spokesperson said all referrals "are reviewed to ensure children's needs are matched to other children residing in the group homes," and kids are "matched to specific facilities based on their unique needs."
Lenz said Bentley has high-level needs that would require two care home staff on at all times.
She also said as he gets older and stronger, he is getting more aggressive, which has meant the family has had to find new homes for two pets so far.
"I'm sleeping with one eye open. And I'm not sleeping well because I'm worried about what's going on, what's going to happen," she said.
"I'm at the point again where it's going to start affecting my employment."
Another sting for her is she has to relinquish her parental rights to Child and Family Services in order for Bentley to be eligible for a spot.
"As an Indigenous person, that's almost the last thing you want to do," she said, but she's burning out. It feels like she's working 24 hours a day, she said.
"I cried, went through depression … [but] finally came up with, 'OK, this is the best overall scenario for everybody involved,'" said Lenz.
"I just want him to get the help that he needs before it's too late."
Not enough beds, workers
Jennifer Frain, chief executive officer of the non-profit New Directions for Children, Youth, Adults and Families, says the voluntary placement order process families have to go through to get residential care is not ideal, but is needed in order for the province to authorize care for the child.
"Unfortunately that has been the case for a long time.… If your child needs to go into residential care, then the child comes into state or provincial care," said Frain, whose organization provides a range of supports for individuals and families, including services in residential settings and supportive housing.
New Directions has residential homes all over Manitoba for people with intellectual disabilities or mental health conditions. They are often operating at capacity and have an average waiting list of 100 cases at any time, said Frain.
"This system is overtaxed and under-resourced," she said.
It's only when a child moves out of the child-resource area — by "aging out" when they become an adult, for example — that a vacancy opens, said Frain.
On top of the lack of space, workers are underpaid, she said — especially considering the level of care they need to provide — which makes it hard to keep them.
Autism Canada's Chabot echoed that point, adding there's a particular lack of support in remote locations across the country.
While the province said the latest provincial budget did announce additional funding for Children's DisAbility Services, the spokesperson did not say if there was a plan to create more full-time residential care for children with disabilities.
Lenz's last conversation with the worker responsible for looking for Bentley's placement was around a month ago, she said. During that phone call, she was told that the worker was leaving that position, and she will be getting a new worker.
It feels like she's starting right back at the beginning, said Lenz.
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