Who’s in charge here? The tangled web of disability governance and policy in Canada

At a recent Senate committee hearing on the Disability Tax Credit (DTC) and the Registered Disability Savings Plan (RDSP), the father of a child with autism made a heart-felt plea and a chilling statement: “We are impacted by the inability to secure our son’s future. We are his sole social circle, we are his financial backers, we are his transportation – we are his life. My fears keep me awake at night.

If we don’t have something in place – a plan, a program, a support network – what will happen to my son when I’m gone? Institutionalized, neglected, or worse, homeless, with no love or supports – I need peace of mind and he needs a future.

Who do you think this father should turn to in Canada to raise these important issues?

The Minister of Revenue, Diane Lebouthillier and the Canada Revenue Agency (CRA)? Probably not your first guess. Yet through their administration of the DTC our national tax agency is the unlikely gatekeeper of a number of important disability supports in Canada.

In February, Minister Lebouthillier and CRA representatives appeared before the Standing Senate Committee on Social Affairs, Science and Technology to defend their highly-criticized supervision of the DTC – a program that currently fails to reach most Canadians with qualifying disabilities, with take-up estimated to be only around 40 per cent of eligible working-aged adults.

Over the course of the hearings, disability advocates and Senators reiterated a broad range of concerns including poorly-defined and interpreted eligibility criteria, a complex application process, opaque appeals channels and the absence of adequate data to monitor the program.

While some of these issues can be addressed with more effective administration – for example, the CRA has yet to enforce the bill limiting third-party fees despite the bill being introduced four years ago – others are beyond the scope of the CRA.

Yet it is unclear which ministry is willing to address them. At the heart of this issue is the fragmentation of the governance of disability policy in Canada, leaving no single ministry with appropriate authority, decision-making ability and, importantly, accountability.

The CRA is responsible for administering federal disability tax measures including the DTC and aspects of the RDSP. Finance has purview over the legislation underlying these tax measures (including the eligibility criteria for the DTC) via the Income Tax Act. The Minister for Sports and Persons with Disability is responsible for administrating the grants and bonds associated with RDSPs (for which the DTC is a prerequisite), in addition to its mandate around accessibility and overseeing the Office for Disability Issues.

This fractured governance and limited accountability bodes poorly for Canadians with severe disabilities, a group that faces high levels of unmet needs and significant barriers to accessing education, employment and achieving equal participation in society.

What needs to change?

If we are serious about wanting to improve outcomes for individuals with disabilities – and the federal government should make this a priority – accountability in governance of disability policy in Canada is needed.

A strong and empowered ministry that is directly responsible and accountable for the broad portfolio of disability policy, including both supports and rights-based legislation, is essential. This includes shifting the important task of disability assessment out of the CRA’s purview (and the Income Tax Act) and into a department under the disability ministry’s authority.

In the short term though, the CRA will continue to administrate key disability supports. To do this effectively they need to recognize that they are currently, de facto, one of the most powerful institutions involved in federal disability policy as the decision-maker for access to life-changing disability supports. This will involve both the will to address concerns around barriers to accessing the DTC, and engagement in meaningful collaboration with other ministries.

How Canada governs disability policy says a lot about who we are as a nation and what we value. Our current federal system suggests that we consider disability somewhat as an afterthought, scattered around and tacked on to other programs. But if we value a society that encourages equality and full participation for people with disabilities – as we have agreed to when ratifying the United Nations Convention on the Rights of Persons with Disabilities – we need to do much better.

Dr. Jennifer Zwicker is an expert advisor with EvidenceNetwork.ca, a Director of Health Policy at The School of Public Policy and Assistant Professor in the Department of Kinesiology at the University of Calgary.

Stephanie Dunn is a Research Associate in the Health Policy division at The School of Public Policy at the University of Calgary and an expert advisor with EvidenceNetwork.ca.