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Parents of B.C. kids with disabilities face 'gut-wrenching' choice, says advocate

VICTORIA — British Columbia's children's representative Jennifer Charlesworth says some parents are facing what she calls the "gut-wrenching" decision of whether to place their children with disabilities in government care, so they can get access to
British Columbia's Representative for Children and Youth Jennifer Charlesworth is seen in Victoria on Monday, Dec.10, 2018. British Columbia's children's representative says a years-old government promise to revamp supports for kids with special needs appears to be stalled, leaving those who require help to struggle while they wait for action. THE CANADIAN PRESS/Dirk Meissner

VICTORIA — British Columbia's children's representative Jennifer Charlesworth says some parents are facing what she calls the "gut-wrenching" decision of whether to place their children with disabilities in government care, so they can get access to better support.

Charlesworth said services and supports for families of children with disabilities in B.C. continue to be under-resourced, difficult to navigate, and filled with lengthy wait-lists that leave tens of thousands without help.

She said they are being pushed to make a difficult choice because children with disabilities who are in foster care have an array of additional services and support available to them.

"Parents (are) in that gut-wrenching place of trying to decide what's best for their child, or simply they've been walked to the ledge and they just have nothing else to give. So they feel like it's the only safe place for their child to be," she said at a press conference Thursday.

A report released by Charlesworth's office said a government promise to revamp supports for children with disabilities appears to be stalled as families continue to struggle.

Her office said 14 per cent of 759 people who responded to a survey said they had considered placing their child with disabilities in care under a special-needs voluntary care agreement to get the services and supports they require. 

Fourteen of the 68 people who reported placing their child in care said they did so only to get services and supports for them.

Charlesworth said the Ministry of Children and Family Development announced plans for a new system in 2021, after three years of consultations, with talk of 40 to 45 "community service hubs" to provide one-stop access to services and navigators to help families.

She said the news initially brought hope to the tens of thousands of families whose children aren't eligible for services because they haven't yet been diagnosed, or who have had an assessment but aren't eligible for help under current guidelines. 

Disabilities not covered under current guidelines include Down syndrome, fetal alcohol spectrum disorder and attention deficit disorder, the report said.

But pushback from families afraid of losing services they already had, and concerns over the criteria children would have to meet to qualify, led Premier David Eby to promise more consultations.

Charlesworth said in her report that consultations are not expected to be complete until 2025 and families in B.C. "simply can’t wait any longer" for changes to the system.

"Families with children and youth whose diagnoses deem them 'eligible' for services will still have to rely on a broken system for the foreseeable future," the report said. 

"Even more troubling, tens of thousands of families of children and youth with disabilities that aren’t currently eligible may continue to be left out."

Charlesworth said the government could immediately improve nursing supports, train more specialists to provide supports, and improve respite care. 

She said she has made 25 recommendations for systemic changes in multiple reports since taking her job in 2018, but many have resulted in no action from the government.

"So it's very disappointing to me when we see the lack of uptake on many of these because they're not frivolous, they are not ill-informed," she said.

In a statement, Children and Family Development Minister Mitzi Dean thanked Charlesworth for the report, saying the province is "committed to building a comprehensive system of supports."

The statement said the ministry is currently consulting parents and caregivers to build a system that "meets the needs of all children and youth with support needs," but the province has also taken interim steps to address the issues that are present.

"We are determined to continue to make progress," Dean said in the statement, adding that the latest provincial budget includes more than $48 million in investments this year for children and youth with support needs.

This report by The Canadian Press was first published Nov. 9, 2023.

Ashley Joannou, The Canadian Press