Families shouldn’t have to fight this hard for help

Receiving a diagnosis is the first of many hard steps in the lifetimes of young people who live with disabilities and their families.

What comes next for many families in Manitoba who have a child with a disability is often a harsh reality, plagued by uncertainty, further delays, difficult decisions, gaps in service, and difficulties accessing even the most basic support for their children.

Manitoba’s children’s disability services system has skilled, knowledgable, and supportive service providers. However, resources are scarce and case workers are stretched too thin. As a result, children with disabilities and their families are left with nowhere to turn for support and resources.

The Manitoba Advocate for Children and Youth (MACY) released Bridging the Gap: Achieving Substantive Equality for Children with Disabilities in Manitoba in 2021. The report outlined nine clear recommendations to improve access to services. Almost all those recommendations remain unfulfilled.

Families experiencing challenges accessing services for their disabled child continue to contact MACY for advocacy support. Some have waited months without hearing back from their child’s assigned case manager. Others are navigating abrupt changes made by case managers without notice, receiving inconsistent communication, or they’re being held to varying policies depending on which case manager the family’s been assigned to.

Families with children who have complex needs are particularly affected, especially those living in northern or remote communities, where gaps in support are even more pronounced. The families which can are paying out-of-pocket for support. Some more disadvantaged families are going without essential support. Other children with disabilities enter the care of child welfare in order to receive services even when no child protection concerns exist. These are the choices families must take to access services their child requires while waiting for public support that may never arrive in time to make a meaningful difference.

The inconsistencies in disability services across Manitoba are more than frustrating for families already navigating the complexities of raising a child with disabilities. In reality, they’re also facing a broken system that feels unpredictable and, for some, inaccessible.

Wait times for assessment and diagnosis remain unacceptably long; however, a recently-approved policy change will allow pediatricians to diagnose autism, a long-advocated step that is expected to be implemented soon and should help reduce delays. But diagnosis is only one step. Families often wait months for an assessment, but even longer to access the services that must follow. Without timely access to services, a diagnosis on its own does little to change outcomes for families who are still waiting for support.

In provinces such as Ontario and Alberta, provincially-funded supports such as occupational therapy, speech-language therapy, and behavioural management are available at home in addition to schools and childcare centres. In Manitoba, however, these supports are not available in-home and can only be accessed through pathways that place additional financial strain on families.

This is a rights issue.

By ratifying the United Nations Convention on the Rights of the Child and the Convention on the Rights of Persons with Disabilities, Canada – and by extension, Manitoba – committed to ensuring that all children have what they need to reach their fullest potential. This right includes access to services that promote dignity, inclusion, and active participation.

When children with a disability cannot access timely services, and when their families are left to carry the burden alone, their rights are affected in very real ways.

Recent provincial budgets included increased investments in children’s disability services and efforts to address growing caseloads. While these investments are important, families continue to report that meaningful change remains slow.

Earlier this year, Manitoba rejected Bill 232, The Autism Strategy Act, while asserting that “the work is already being done.” Families actually navigating Manitoba’s children’s disability support services system, on the other hand, did not agree. It was only after a significant public response that the government allowed the bill to proceed.

Manitoba does not need to start from scratch. The recommendations exist, the evidence is clear, and other provinces have already shown it’s possible. What’s still missing is co-ordinated, consistent action that places children and families at the centre of service delivery. Because no family should have to fight this hard for help, and children with a disability should not have to reach a crisis point before help becomes available.

Sherry Gott is the Manitoba Advocate for Children and Youth.