“The man jumped on his horse and ran madly off in all directions.”
Stephen Leacock
Such has been disability advocacy and activism in Canada.
But not in Australia.
Building Australian Unity
For all the plaudits and superlatives that have been laid at the feet of the NDIS in Australia, a truly breathtaking social policy initiative, it is not primarily the disability insurance idea itself nor its subsequent implementation that sets Australia apart. Rather, it was the ability of the disability community and their supporters to speak with one voice to get it done.
How was that possible?
First, three strong nationally based organizations existed that had wide and non-overlapping reach. They represented respectively, a) persons with disabilities, b) care givers and, c) service groups and agencies. Moreover, their reach extended into each State of Australia. This made convening easier. Secondly, the Minister responsible in the early days, Bill Shorten - having grown tired of the parade of advocates for this or that disability - ‘banged heads’ and called for a more cohesive message from the sector. Third, those involved were given their voice but worked to agree where they could and defer on what they could not agree. The result was the creation of a set of commonly accepted principles that became the central features of the insurance’s plan design (Table 1).
Meanwhile, in Canada…
Every Canadian Counts has worked, since its inception, to build unity among the disability community, by promoting the creation of a system wide National Disability Insurance Plan. It seemed so obvious a rallying cry. Potentially, it meant sufficient funding for support services for everyone with lasting disabilities. It meant greater efficiency and consistency in service delivery and outcomes. It meant greater fairness as waiting lists would be dissolved and quality services would exist across the country.
As they say, what is not to like?
Moreover, there was a working example from Australia where the challenges and issues of implementation provided such great teachings and lessons learned.
So where are we now?
Eight years later Every Canadian Counts continues to engage whom it can to gain support for this public policy proposal. And while it has resonated among many, the unity to make it a reality nowhere near the kind of consensus the Australians achieved.
Why? The reasons are many and multi-layered and can in part be attributed to the genesis of ECC itself.
ECC as a Start-Up
Every Canadian Counts is an entirely a volunteer organization which entered the advocacy stage as an offshoot of a disability service organization: the Ottawa Carleton Association for Persons with Developmental Disabilities. It was an upstart, not generated out of sector wide discussions. Added to that, it was advocating for a public policy the disability community in Canada had never heard of – a National Disability Insurance Plan (NDIP). ECC was a totally volunteer based upstart promoting an alien idea. With limited resources it started the conversation ‘at the top’ while simultaneously trying to recruit and engage with the wider disability community. This was disruptive, (audacious?) as differential reactions showed.
The Reaction
What were those differential reactions? They ranged from instant support to clear hostility, but patterns have emerged. In addition, historic momentum and the existing culture of activism also shaped reaction and engagement that prevented the building of a strong unified front such as occurred in Australia.
Supporters
Institutionally the organizations that have supported the idea were often, but not totally, those that worked across disabilities. Support also came from outside the disability community. Building Trades and the Nurses Association and the Canadian Centre for Caregiving Excellence for example have been dedicated supporters of the idea.
Elsewhere outside this, many organizations and voices in the disability community were, over time, made aware of the idea of a NDIP, they have not indicated support one way or another. This remains in large part because of ECC’s own limited capacity to engage with them and/or convince them of the great merits of such a plan. There are also concerns about the implications of such a plan for funding flows and accountability which remain to be addressed.
The Role of System Inertia
Another reason for a lack of unity is that the disability agenda has been focused elsewhere, as noted in our last Newsletter. The accessibility and anti-poverty agendas as manifest the Accessible Canada Act and the implementation of the Canada Disability Benefit Act have focused the sectors attention. These were legacy agendas. But as the saying goes ‘they took up all the oxygen in the room’ and combined with the growing focus on mental health this alien idea of an NDIP was untimely given the momentum and legitimacy behind these other agendas.
Canada’s Action/Activist Tradition
But there are other disunifying or distracting forces at work as well. One is, as we call it, the ‘National Strategy’ default agenda. This is the propensity of specific disability representative organizations to call for their own ‘national strategy.’ If we continue along this path, Canada will have multitudinous national strategies, each with their own bureaucracy and funded from different envelops, each having to negotiate their relationship with the provinces and with different performance standards and expected outcomes.
A second tradition also exists. It is the tradition of infighting. Under a regime where resources are scarce, advantage is sought through identity and capturing the agenda in some way that speaks louder than others. It may be by defining things differently (the battles over language), by being at the font of the disability issue of the decade (Downs in the 70’s, Spinal Cord Injury in the 80’s, and so on) or program focus (e.g., Employment), or by unhappiness with the approach of an existing but dominant advocacy organization. And while together theses competing voices have improved the situation for many, it does consume a huge volume of social capital that leaves the system wide issues – waiting lists, general underfunding, unstandardized performance outcomes, and overall fairness among them, unaddressed.
The result of these two endemic features of current activism will be a costly criss-crossing road of disability supports. While Australia is not immune to specific interests voicing specific concerns, at least it is now within the context of a system wide service provision capability.
Can We Get to One Voice?
Since 2015, there has been progress made in bringing greater unity of purpose the sector. First, under the Accessibility Act implementation, the Include-Me Network was created, with the active support of the Minister Carla Qualtrough, to rally the sector behind the Act. This network has shown an ability to grow and has the best potential to be a truly sector wide communication tool. Secondly, with the Disability Benefit enactment, the Disability Without Poverty action team has rallied the sector to come together on that legislation. Elsewhere, there was the creation of the pan-Canadian Disability Coalition in 2021 created to urge the government to prioritize items such as: the national housing strategy, the national action plan to address gender-based violence, among others. Made up of over 30 organizations it showed willingness to collectively mobilize, but the multiplex of priorities resulted in no priority leading to ultimate demise and the descent towards business as usual.
What next?
The National Disability Insurance Plan idea has one great advantage – a mission and singular focus to improve funding for disability services that potentially benefits all. And while there is not yet system wide support for the idea, a strong core exists from which to build. But ECC, historically the lead promoter, while loud (punching above its weight?) is penniless, with little capacity to carry it forward without more substantive support. Currently ECC enjoys meaningful in-kind contributions and significant willingness by many supporters to up scale that up. But financial support is lacking, in part because it has not been the focus of ECC efforts. ECC has been reluctant to be yet another disability organization competing for funds and has been looking to multiple small contributions as an alternative.
The End Game
As the disability insurance public policy option becomes more of a reality, the community of supporters will be called upon to lend their voice and perspectives as to who will be covered, what will constitute essential supports, and how to measure performance among many other design features. Nothing About Us Without Us will remain the operational principle. Every Canadian Counts has suffered from its ‘coming from outside’ the popular or current discussions. But there was no other way to introduce the idea.
ECC will work, where it can, to provide the framework and information required for participatory discussions by persons with disabilities in a way that creates safe and supportive spaces to engage in critical thought, enabling reflection to inform action, while simultaneously working to broaden the base of support. Our current board reflects that commitment.
Some guiding and unifying principles for that framework are suggested in Table 1 below. Under these, ECC will work with all disability organizations to leverage their mutual strengths to the cause. Ultimately (and ideally) ECC does not see itself as a leader so much as a Hub, a Hub of a Network of Centres of Excellence in Disability Services and Engagement (NCEE) made up of advocacy and service organizations, parents and care givers groups and representatives of persons with disabilities working the same end.
This closes in the wish for unity and solidarity as we move forward.
National Disability Insurance Plan Tentative Guiding Principles
1. Designed to fill the disability supports gap in Canada’s social safety net.
2. Aims to remove barriers to the full social, economic, and cultural participation of individuals living with disabilities and their families.
3. Reframes disability support as an economically responsible investment rather than charity.
4. Focuses on early intervention and sustained support to produce better long-term outcomes.
5. Relieves families of unpaid care work and of being primarily responsible for providing disability supports to loved ones.
6. Offers person-centred funding.
7. Covers cost of regular care, support, therapy, equipment, residential needs, and training (personal care, life skills, employability).
8. Provides choice to individuals and families regarding how funding for supports is managed (indirect vs. direct funding).
9. Offers equitable levels of support to individuals with a similar type/severity of disability no matter where they live.
10. Available to all Canadians who are born with or acquire a long-term disability.
