FREQUENTLY ASKED QUESTIONS
What do you mean by “disability supports”?
“Disability supports” include a variety of medical and non-medical devices, together with services that help individuals get through day-to-day life in spite of the challenges associated with their disability.
Disability supports generally fall into three broad categories:
- Technical aids and equipment – For example: mobility devices, prosthetics, visual aids, hearing aids, medical equipment and prescriptions, specialized computers and programs for communication
- Personal services – For example: care attendants, interpreters, occupational therapy, day programs, housing, respite care, specialized education and employing training programs, specialized medical care
- Brokerage – Assistance with identifying needed disability supports and then getting access to them
Early research and consultations with stakeholders revealed that in order to be successful and receive broad-based support, the national program will need to be rooted in six key principles:
Individualized Funding: Each program participant will be assessed and receive funding based on their unique disability support needs, rather than receiving block funding for a basket of services and supports the participant may or may not benefit from.
Choice: Each participant and their guardians, as appropriate, will choose whether to receive direct support (manage support dollars and application for services themselves) or indirect support (have a service organization assist with management of support dollars and coordinate services on the individual’s behalf).
Comprehensiveness: The program will provide supports from the time the disability is acquired through to end of life. If an individual’s support needs change, the support program will respond quickly. Individuals will not have to reapply for supports when they enter new life stages (such as adulthood or old age). Disability supports will be coordinated by a single government agency so individuals do not have to apply or reapply for supports to multiple agencies in their lifetimes.
Accessibility: The process to apply for supports will be easy to access and understand. Application support will be available to those who need help filling out necessary paperwork and completing any required assessments. All forms and information materials will be available in a variety of adapted formats (e.g. braille, large print, audio, accessible digital documents).
Portability: If individuals need or wish to move between cities, regions, or provinces/territories they can take their supports with them.
Accountability: The program will have a clear, fair, and timely appeals process. The program will include ongoing collection of data and user feedback to measure success, identify areas of need, and anticipate future needs. The program will be responsive to user concerns.
The intention of the ECC Coalition is to advocate for a program that covers all Canadians living with long-term, chronic disabilities. The Coalition, through consultation and research, will define which challenges and health conditions should be considered “chronic disabilities”. However, we hope to make the definition as inclusive as possible to embrace physical, developmental and intellectual disabilities, and chronic mental illnesses.
If you have one or more of the eligible disabilities your age, income, and where you live should not affect your ability to participate in the support program.
The exact structure of the national program has yet to be decided through discussion and debate amongst ECC Coalition members in close collaboration with government at all levels. As Canada’s provinces and territories are responsible for delivery of social programs, they will ultimately be responsible for delivering disability supports under a national program as well.
The main difference from our current system once a national program is in place will be that provinces and territories would receive greater financial support from the federal government to deliver disability support programs and would also be required to make sure their programs meet a set of national standards.
How the program would be monitored also needs to be decided by Coalition members. However, we have heard from stakeholders that they want a program that ensures:
- Much less paperwork and re-assessment to get needed supports
- Application of support standards and eligibility criteria is consistent and needs-based
- Service providers are certified and delivering a quality service
- Those caught abusing the program are dealt with without making application and monitoring processes more difficult for other participants using the program in good faith.
Where funding would come from would need to be worked out by the federal government in partnership with our provinces and territories. We predict it would come from a combination of federal tax dollars and provincial/territorial dollars that are diverted from existing support programs into programs that meet the new national standards and therefor benefit a greater number of Canadians. It is important to emphasize that in this transition no one would lose existing services and supports unless deemed inappropriate or inadequate to the new standards.
Other countries that have implemented national programs often raise taxes slightly to help fund them, such as in Australia where they raised federal medicare taxes by 0.5% with the public’s support. However in Canada we can likely find the funds in our existing tax base. In spite of increases in federal taxation over the years, transfer payments to the provinces for social programs that assist Canadians in times of need have dropped significantly. It’s time to reverse this trend.
What could some of the costs and benefits for Canadians be?
Due to the lack of publicly collected and available data, we don’t know exactly how much (in real dollars) the disability support crisis is costing Canadians at present. But we do know the following:
- waiting lists for support programs across Canada are long and provinces are spending a lot on crisis interventions rather than investing in sustained supports (which are cheaper over the long-term)
- many individuals and family caregivers are out of work because of unmet disability support needs, which is shrinking our workforce and tax base.
So although this program might require a substantial investment from our governments in the beginning, over the long run we believe it has the potential to save spending on disability supports and grow our economy. For example – Australia’s National Disability Insurance Scheme, which is focused on prevention and was publicly supported through a 0.5% medicare tax increase (about $350 per year for the average household), is projected to save $20 billion in spending and add 1% to their GDP by 2035.
In addition to the national financial benefits, this program would also bring Canadians peace of mind: if they or a loved one is ever born with or acquires a long-term disability they would have their essential support needs covered by this program. No matter their income, where they live, or their ability to self-advocate, every Canadian would be covered.
How does the Coalition plan to get provinces and territories to work with the federal government on developing this program?
In spite of the current tensions that exist between the federal and provincial/territorial governments, we believe our governments will want to work together to resolve the disability supports crisis in Canada.
The federal government alone has commissioned over 21 reports exploring disability issues in Canada, resulting in thousands of recommendations. The majority of these recommendations have not been implemented and politicians told us it is because there has been no “united push from below”. In other words, if Canadians do not come together to ask the politicians to act, they won’t. We believe that once Canadians are educated about the state of disability supports in Canada they will tell the federal government work with our provinces and territories to improve things.
The provinces (excepting Quebec) have already agreed to work together on disability support issues. In 1998 they jointly published “In Unison: A Canadian Approach to Disability Issues”. They agreed to work together to ensure all Canadians with disabilities are able to participate as full citizens in all aspects of Canadian life, identifying three building blocks necessary to make this vision a reality: 1) disability supports, 2) employment, and 3) income. However, they know they can not make these changes without support from the federal government. Each province and territory is struggling to finance disability support programs as federal transfer payments for social programming shrink. The Ontario Drummond Report (2012) even explicitly called on Ontario to work with the federal government to improve supports for those with disabilities who can not work.
Further, there is national legislation to support coordination. The Federal-Provincial Fiscal Arrangements Act states “all provincial and territorial governments are invited to work together to develop a set of shared principles and objectives that could form a foundation for promoting the well-being of Canadians”. Preventing Canadians from facing financial, medical, and family crises as a result of disability would definitely promote our well-being. It would also save our governments a lot of money on emergency interventions.
In addition to all of this, our policy experts believe social programs in Canada, like disability support programs, need some level of national standardization to be effective. A recent study from the Canadian Association of Social Workers found that the majority of their key informants (those with 25+ years working in social policy in Canada) “recommend some conditionality attached to the Canada Social Transfer and, moreover, that mechanisms for accountability and enforcement be put in place for the use of these federal funds”.
Are other groups not already advocating for a national supports system?
The short answer is “no”. There are groups advocating for similar programs at the provincial and local levels, but these changes would fail to solve our national issues of inadequate funding and inability to relocate with supports.
At the national level there are advocacy movements as well, but these are focused on income, tax, and employment programs, not coverage for daily support needs. These movements tend to advocate for only one type of disability, whether that be a developmental disability or a physical disability; no one has brought the broader population together. In addition, their proposed solutions are inadequate: even a basic guaranteed income or income from a full-time job is often not enough to cover annual support costs. These solutions also do little to improve the the availability or quality of supports to which Canadians have access. So while these programs would have some positive impacts, they would largely fail to meet the most pressing needs expressed by stakeholders and ECC Coalition members – access to quality daily supports for all Canadians living with disability.
How far along is the ECC Coalition in realizing this vision?
Based on the experience in Australia, we expect the advocacy process to take around five years. The visioning for ECC began in early 2014 and the organization was officially incorporated in on the eve of 2015, so we are currently in year one. If the Coalition has a proposed design ready (with data to back it up) and if the provinces and territories have voiced their interest in participating in the program, this could be a major platform issue in the next federal election.
At present, the Coalition is steadily gaining new members from across the disability spectrum and attracting public supporters from across Canada. We are beginning to work with academics and national research organizations to build a comprehensive research agenda to inform development of a program model for Canada. The Coalition has also begun to identify politicians who will champion ECC’s vision at both the provincial/territorial and federal levels, and has been invited to present to government committees at both levels.
This year our challenge will be fundraising. We need to build our core organization’s capacity to support the Coalition’s work, extend outreach into new communities across Canada, and produce advocacy and education materials for use by our local champions and grassroots organizers. We will also continue our efforts to sign up new Coalition members and to further diversify our Board of Directors, membership, and support base.
I have heard it called a “national insurance program”. Would it work like private insurance does?
We do not yet know what the final form of the national program will be. The purpose of ECC is to bring stakeholders together to discuss how they would like a national program to be structured and what they would like to see included. We refer to this as our “made-in-Canada” solution.
An insurance model will be one option, as this model seems to be working well in other countries, like Australia. However, this would be a public, universal insurance program – not a private insurance program. Under a universal insurance program, all Canadians would automatically pay a little bit into it through their taxes (just like our national Medicare program). This way the burden of paying for disability supports is evenly distributed across our whole population, and any Canadian who develops a long-term disability, at any time, can access the supports they need without having to pay any more than anyone else does. Unlike private insurance, Canadians would not have to opt-in to the program, get quotes from competitors, pay deductibles to access benefits, or have benefits reduced if their health status changes. In the words of one senior health administrator, ECC’s vision “is the unfinished business of medicare”. But again, this is just one option we’ll be exploring.
I have / A loved one has a disability. How will ECC benefit me / my loved one?
If you or a loved one are living with a long-term disability, the Every Canadian Counts Coalition could offer a number of benefits, both now and in the future. At present the ECC Coalition gives you the opportunity to:
- Advocate for support changes by sharing your experience of trying to access needed disability supports at www.realpeoplecampaign.com.
- Voice your opinion about what should be included in a national program through our website, community meetings, focus groups, and regional forums.
- Connect to other individuals, families, and organizations that have similar experiences and a shared vision for disability supports in Canada.
If our program is successfully implemented, there is also the potential that you could gain access to more appropriate and/or additional disability supports. Even if your needs are currently met, a national program could have benefits for you – the ability to move and take your supports with you and having supports available over the course of your lifetime are just two examples.
I do not have a disability, why should I support ECC?
The ECC Coalition aims to strengthen Canada’s social safety net and assist Canadians in need. If you believe all Canadian citizens deserve to live a life of dignity and have the opportunity to participate in our society, you should support the ECC Coalition on moral grounds alone.
But there could also be benefits for you, personally! 1 in every 3 Canadians will experience disability at some point in their lives, yet the majority of Canadian workers believe there is only a 7% chance of this happening to them. The truth is, you are able-bodied today, but you’re only one accident or illness away from disability (and so are those you care for).
You might even be included in the 84% of Canadians that do not have private insurance to cover the cost of disability supports if you ever need them. With a national disability supports program in place, you would not need to worry about buying private insurance and you could rest assured the right supports would be in place if and when you need them.
How can I get involved with ECC?
- Sign up as a supporter
- Share your story about trying to access needed disability supports
- Volunteer (email us at email@example.com):
- Host a local information meeting or fundraiser
- Share stories with your political representatives
- Become a local champion (speak to the media, politicians, and residents in your community to raise awareness)
What services does ECC provide?
The ECC Coalition is not a service provider, it is an advocacy organization. However, there are a number of benefits to participating in our work (see “I have / A loved one has a disability. How will ECC benefit me / my loved one?”). You can learn more about ECC here.
Will our organization have an opportunity to contribute to the design of the program and whom it should cover?
Yes! After your organization registers as an official ECC Coalition member you will be invited to host information sessions and focus groups with your organization’s members to collect information about what should be included in a national program. You will also be invited to attend regional forums and conferences where you can share this information and vote on the basic building blocks for the national disability supports program proposal we give to our federal and provincial/territorial governments.
How will our organization benefit from supporting ECC?
By supporting ECC, you will ensure the experiences and needs of your organization and its members are reflected in the Coalition’s discussions, votes, and final form of the national disability supports program proposal we present to our governments. You can learn more about supporting ECC here.
How will ECC benefit from our involvement?
The ECC organization’s mandate is to build a diverse and inclusive coalition that is representative of the broad spectrum of long-term disabilities Canadians are living with. The more participants we have sharing their experiences, concerns, and ideas, the stronger the final program model will be. You’ll also be helping us reach a bigger audience in our efforts to raise awareness about the disability supports crisis in Canada – for every member you share information with, they’ll go on to share it with friends, family, and peers.
How do we sign up as a member of the Coalition?
To sign up as a member of the Coalition, simply have an appointed representative from your organization email firstname.lastname@example.org. In the email tell us your organization has decided to support ECC and become a Coalition member. Attach a copy of your organization’s logo (jpeg format) so we include you in our online supporters page.