This year’s Manitoba budget provided a glimmer of hope for families of children with disabilities.
Budget documents lay out the provincial government’s plan to spend $3 million over the next year to expand its Children’s disABILITY Services (CDS) program to First Nations families living on reserve and provide an extra $900,000 to help CDS cope with rising caseloads related to increasing autism diagnoses.
For families struggling to access provincial disability services for their children, the funding is welcome news and helps right an historic wrong for First Nations families. However, it must only be the beginning of reforms. Without accompanying changes to the way CDS operates, families of children with disabilities will continue to fall through the cracks.
We recently released a report for Kids Brain Health Network (KBHN) that catalogues and compares provincial and territorial disability policies nationwide, and includes input from families about their experiences accessing programs and services for their children with disabilities.
Through a survey and follow-up discussions, parents in Manitoba told us that while they applaud CDS for providing much-needed supports – including information and referral, respite care, autism services and therapy services – families face significant barriers accessing the services, preventing them from getting supports when they need them.
One of the biggest roadblocks they identified was a complex and lengthy application process that delayed access to supports for months or years.
One of the parents told us: “We filled out all the stuff. I provided all the assessments and documents that I had, and then sent it off, and then within a couple years, they finally got back to me.”
Other parents complained that they had to resubmit already-completed paperwork because CDS misplaced it.
Parents also pointed to long waitlists for services for their children, including getting diagnoses – in some cases, it can take up to two years for an autism assessment.
Delays in diagnosis prevent children from getting necessary supports as soon as possible, putting them at risk of falling behind in their development and education.
One parent told us that, “the waitlists are way too long currently to make support helpful when it is needed. By the time we get to the top of the list, either the support is no longer needed or the situation has gotten worse.”
In some cases, families give up on the long waitlists and pay for private services out of pocket, straining their finances and raising questions about equitable access.
Heavy workloads for CDS case managers exacerbate the problem. A parent summed it up: “Workers are overloaded with clients and often have too many clients…it’s hard to connect with (our) CDS worker.”
Other parents said they have waited years to be assigned a case manager or have had several case managers in the same year because of frequent staff changes.
Still others voiced frustration about inconsistent service standards – saying that while some case managers were responsive and knowledgeable about programs, eligibility and application processes, others were less helpful, resulting in families having uneven access to important services like respite care.
Parents also singled out the siloed nature of the province’s disability regime, pointing to a lack of co-ordination and communication amongst CDS, schools and adult disability services that can leave families in the dark about supports at key turning points in their children’s lives, including when they start school and reach adulthood.
While the barriers families encounter are not unique to Manitoba – our research revealed similar problems across the country – the Manitoba government has an obligation under its accessibility legislation and an international treaty to which Canada is a party to ensure that the province is inclusive and accessible.
The government has taken a step in the right direction by committing to close historic service gaps for First Nations families living on reserve and investing more money to reduce high caseloads.
It must build on that momentum by eliminating gaps in services that families have identified.
Accessibility is about more than having policies on paper. The true test is whether the programs and services that arise from government disability policies actually meet the needs of the people they are meant to serve.
It is time for the provincial government to ensure that CDS is accessible to all who need it when they need it. Children with disabilities and their families deserve nothing less.
Photo courtesy of DepositPhotos
