For Canadians with disabilities, supports are often too little, too late

This column is an opinion from Amelia M. Kiddle, anassociate professor of history at the University of Calgary. For more information aboutCBC's Opinion section, please see theFAQ.

Last week I received a mysterious direct deposit of $600 from the government of Canada. I checked my CRA online account and searched my memory. Finally, it dawned on me. It was a federal COVID-19 disability payment for my son Albert Jucker-Kiddle, who died at the young age of seven on March 4, 2019.

Because he had been eligible for the disability tax credit, and that credit extends one year beyond death, the federal government must have used the tax year 2020 to determine who was eligible to receive the payment.

Too little, too late.

This is an oft-repeated refrain for individuals with disabilities and their families. As advocacy organizations have argued, in the flurry of federal supports created for individuals and businesses affected by the economic and personal dislocations of the pandemic, the passage and rollout of benefits acknowledging the extraordinary costs and unique hardships facing individuals with disabilities and their families has been inadequate and slow.

Largest minority group in Canada

Unfortunately, this is characteristic of the federal government's approach to this group of Canadians. Given that individuals with disabilities make up approximately 22 per cent of the population and are the largest minority group in Canada one that people from all walks of life can join at any time due to illness, injury, and ageing it is time for change. Inclusion and equity must be at the forefront of the design of government policies, not an afterthought.

Albert was born in Connecticut, where following his diagnosis with congenital structural abnormalities of the brain, he immediately accessed early intervention services through the federal Birth to Three program. A local agency provided in-home therapy and advocacy support that followed the best practices established in the Individuals with Disabilities Education Act (IDEA). This ensured that minimum federal standards were met so that the state could access federal funds.

When we moved home to Canada before Albert's first birthday so that I could take a job offer from the University of Calgary, I was grateful to find a host of federal, provincial, and local programs that would help us meet his complex needs, but I also faced significant obstacles to identifying and accessing the appropriate supports.

In Alberta, which has some of the best supports available to children with disabilities and their families, services are provided by the ministry of health, the ministry of education, and the ministry of community and social services.

Despite my advantages of education, flexible work hours, and comfort in challenging bureaucracy when necessary, navigating these programs and the processes and qualifications to access them proved challenging and exhausting. It was obvious how difficult it is for families lacking my advantages, facility in English, or without citizenship or permanent resident status, to access support.

I was frustrated that a comprehensive early intervention program that guaranteed children's access to the services, such as the one we experienced in the U.S., did not exist.

Timely and intensive early intervention services for children have been shown to be an effective way for governments to improve outcomes for children with disabilities and their families.

At present, the approach to early intervention is backwards: families must prove that their kids are not meeting developmental milestones to access services. This gatekeeping approach costs kids and families invaluable time, and research has demonstrated that the sooner supports are introduced, the better the outcomes are for children and families.

Early investment helps to avoid more costly interventions down the road, but more importantly, improves the inclusion of children with disabilities and later adults in Canadian society. Otherwise, the supports on offer are often too little, too late.

A tremendous opportunity

While Albert was alive, I participated in the consultation process surrounding the Accessible Canada Act, which was finally adopted this year. The legislation covers federal transportation, but not issues that fall under the jurisdiction of the provinces health and education. The result is a patchwork of services that can be changed arbitrarily, as in the reduction of Program Unit Funding for early learners in Alberta, and uneven outcomes across the country.

The announced plan for universal federal funding for childcare, to be provided in partnership with the provinces, presents a tremendous opportunity. The plan must be conceived through the lens of inclusion from the outset. Federal funding to the provinces must be tied to the implementation of evidenced-based early intervention supports and meeting minimum federal standards for inclusion. Best practices for the early education of children with disabilities must be at the forefront of the process, not an afterthought.

I will be donating the $600 I received from the federal government to the scholarship fund in Community Rehabilitation and Disability Studies established in Albert's memory at the University of Calgary. In the meantime, the federal and provincial governments must come together in partnership, for the best interests of children of all abilities.

Anything less would be too little, too late.

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