WINNIPEG -- Manitoba’s child advocate is calling for more supports in the province to help children with disabilities receive appropriate care, saying families are ‘struggling’ with gaps in care.
In a report released Thursday morning, the Manitoba Advocate for Children and Youth (MACY) said Manitoba’s services with children with disabilities are underfunded and under-resourced.
“Manitoba families are struggling,” writes Ainsley Krone, the acting advocate for MACY.
The report said based on consultation with parents and caregivers, gaps in service exist for many children with disabilities and their families.
“Families who can, pay out-of-pocket for supports. Yet families that experience multiple layers of disadvantage struggle more, including Indigenous caregivers and single-parent households,” Krone writes. “Some children with disabilities may enter the care of child welfare in order to receive services even when no child protection concerns exist.”
The report examines the case of Emma (not her real name), who was born with a form of brain damage that caused her to experience seizures. She was later diagnosed with additional disabilities, which caused sleep challenges and behavioural issues. Emma received respite services throughout her life to help her navigate life and school, but her condition deteriorated, resulting in increased seizure activity, sleep challenges, and behavioural issues.
Emma’s family struggled when she was older to receive the support they needed from Children’s disABILITY Services (CdS) and Child and Family Services, and to find an out-of-home care provider. Emma died following an accident in 2017, according to the report.
In the report, Krone said MACY is calling on the Manitoba government to enact new legislation to govern services for children with disabilities and their families.
“Creating legislation that empowers those with expertise in disability care to oversee those services is essential to ensure children are not unnecessarily entering child welfare care due to gaps in a CdS mandate,” Krone writes.
The report also recommends that work begins to reduce wait times for diagnostic assessments with the long-term goal of limiting wait times to a maximum of six months and to “develop and resource a full continuum of flexible respite support for families.”
“What became abundantly clear from speaking with caregivers is while families told us that workers inside the disabilities system are skilled, knowledgeable, and supportive, resources are scarce and are stretched too thin,” Krone writes. “As a result, families are struggling with the services that are available to them.”
The findings of the report come as no surprise to David Kron, the executive director of the Cerebral Palsy Association of Manitoba, and a member of the Children's Coalition – a group he said has been working to identify these gaps in the province for many years.
He said one of the biggest issues is the waitlists.
"If you are a new parent with a child with a disability, first you have to wait to get diagnosed because nothing happens without a diagnosis, then once you get the diagnosis, then you have to go on a waiting list to get a CDS worker or to get into different programs," he said.
"Doesn't matter what the program is, there is a waiting list for it."
He said another issue in Manitoba comes down to the province's geography, which has a big impact on Indigenous children living on First Nations.
With the release of the advocate’s report, Kron said the province needs to take action. He said one of the easiest things the province can do is make the system more transparent.
"Put it out on a website, print what you are eligible for. Make it clear and simple language – what are you entitled to?" he said, adding CDS and CFS workers need to work together.
"Make the goal to keep families together, keep them secure, safe, and supported."
He said these things need to be addressed sooner rather than later.
"If they are not addressed, what happens is you take a small problem with a small price tag on it, and it festers into a crisis," he said.
"Some families have a big support network and income to resolve some of these issues, some do not."
Manitoba Families Minister Rochelle Squires said she's told the Children's Disability Services division to work with CFS to reduce the barriers facing children with disabilities and fulfil the report’s recommendations.
"I certainly agree with the report’s findings and want to ensure that children with disabilities receive the best care possible in the province of Manitoba," Squires said, adding the province will have more to say in the days to come.
