Creating the Vancouver Benchmarks

There is work to be done – and we need your help!

Let’s imagine – and we need your help!

At long last, you and your group (1) are ushered into the meeting room, where you sit down with a powerful elected government representative and her senior officers.

“We recognize”, she says, “that we have to make fundamental changes to the way in which the people in this country who have disabilities are recognized as full citizens, and given the support they need to live with dignity, freedom, and choice. We’ve asked you here in the hope you will tell us the actions that we, as a government, need to take.”

Would you be able to give an answer that was confident, clear and detailed?

We aim to harness the expertise of people attending this conference to develop a document that can be used by any government that intends to promote a society that fully includes people with disabilities as equal citizens, and by anyone who is advocating for change in their own jurisdiction.

Fifteen years ago, at the Seattle conference on Individualized Funding and Self-Determination, we did something similar, and it led to the Seattle 2000 Declaration The Declaration offered a strong set of principles for the design and operation of a good individualized funding system. Any government that chose to apply these principles with care and integrity would create an excellent human service system.

However, one of the lessons we have learned in the last fifteen years is that governments do not always do these things with care and integrity! For various reasons – not least because a system that gives power to those who require assistance is an inconvenience to vested interests – governments may be reluctant to recognize some of the implications of the principles set out in the Seattle Declaration.

In the years since the Declaration, the Convention on the Rights of Persons with Disabilities (CRPD) has been adopted by the UN and signed by many countries. The Declaration has added to the pressure on governments to develop policies and systems that recognize and support the full citizenship of people with disabilities.

So, at this conference, we plan to develop a document that takes forward the Seattle Declaration, builds on the lessons of the last fifteen years, and gains strength from the CRPD. This new document needs to be clear and specific about the actions that governments must take to achieve a society that supports citizenship, self-determination and choice for people with disabilities. And the focus this time is not only on the design of public-funded support services, but across the whole range of public policy.

We intend that the document will be written as a set of ‘outcome statements’, describing the necessary policies, systems, and resources as if they have already been created. They will serve as benchmarks (and we’ve called them the Vancouver Benchmarks as a working title) that governments can use to measure their progress against the statements. The message for governments will be:

“This is what you need to put in place. Unless the system you create has all these pieces, it will not enable every person in your country to achieve full citizenship.”

If we can do this it will mean that anyone who is invited to make recommendations to their government will be supported by a document that reflects the combined wisdom of the delegates at the Vancouver 2015 conference. Please help us do this – before and during the conference!

A starting point for your thinking

We’ve created a diagram that maps out the main areas that – we think – need to be covered by the Benchmarks. Please note that while our ultimate concern is with the rights and quality of life of people with disabilities, our direct concern here is with the actions of government. To put it simply, while the CRPD sets out where we hope to travel, the Benchmarks will set out what governments must do to get us there.

The diagram also has some arrows to suggest the most important links between these areas. It starts at the top with the overall aims of government, and then works down through more focused policies, and how they in turn affect the way that public and commercial services respond to people with disabilities. So, for example, the right kind of training for people who deliver support will promote high quality support.

The central column of boxes reflects the view that individualized funding is a key element in the development of a better system. Supports and services that are driven by people with disabilities, families and carers as consumers and paying customers will give workers and support organizations the motivation to deliver high quality services that meet their customers’ requirements. They will also look, for example, to training organizations to help them deliver these high quality services, so the training organizations will in turn be motivated to improve what they offer.

This is not to suggest, however, that a well-designed market can do it all. Individualized funding mechanisms are, we believe, absolutely necessary; but they are not enough. Briefly, international experience has highlighted these reasons:

    1. A system that allocates financial assistance to individuals based on their individual needs is almost inevitably a system that invades people’s lives and limits their choices. On the other hand, some of the financial consequences of disability and disadvantage should be easy to estimate on the basis of straightforward information. So individualized funding should be a supplement to, not a replacement for, a system of financial compensation (Box 5) that people can access easily, and as a matter of entitlement.
    2. Even if people are free to spend their individualized funding in a market of services, they won’t be able to use that freedom well unless they have the information and assistance to make good choices (Box 9). The level of help people need will vary from person to person, and is also likely to increase as levels of funding get higher. Some people may need only information from the Internet, or from mainstream advisory services. Others may need specialist help, from people such as support brokers, to make their plans and find their service providers. In addition, some people will need arrangements that are defined and regulated in law to help them make their choices and to have those choices respected.
    3. In order for people to exercise their rights to make choices and control their own supports they first must be recognized and supported as decision makers. This can be difficult for individuals who use alternative or informal means of communication. It is therefore essential that people’s right to make decisions for themselves is recognized in law and that a system of supported decision making is available to those who require it as articulated in Article 12 of the UN CRPD.
    4. Citizenship for all won’t happen if disability is seen as an area of special need that only requires specialist responses. Governments need to look across the whole range of domestic policies, to see how they need to change to achieve inclusive communities (Boxes 7 and 16). Equally, the mainstream community and commercial sector needs to recognize that citizens with disabilities are important and commercially valuable customers (Boxes 14 and 17).

    How we’re developing the document – and how you can help

    The eighteen boxes are nothing more than headers – pegs to hang more detailed statements. Take Box 3, for example, which sets out the important principle that people with disabilities should have a big say in the development of policies that will affect them. The principle is clear enough . . . but what do government need to do to make sure that it really does happen? What must governments do to make sure it’s genuine, influential involvement and not merely weak consultation? How should governments decide which organizations genuinely represent people with disabilities, and avoid organizations that wrongly try to speak ‘for’ people with disabilities?

    If you have answers to those questions – or answers to similar questions under any of the other seventeen headings – we want to know what they are. Your answer needs to be brief, though: typically a single sentence. For example (though you might not agree with this one), “All organizations representing people with disabilities in policy development discussions have a controlling body where a majority of the elected members are people who have disabilities”.

    By the way, don’t forget that the Vancouver Benchmarks are intended for all jurisdictions. Countries will vary in the financial resources they have available to assist people with disabilities, in their democratic traditions and mechanisms, and in their cultural recognition of the rights of people with disabilities. We need to find the truths and the essentials that apply to all countries.

    We hope this will lead to a lively discussion, and to the gradual emergence of widely supported benchmark statements. As they emerge, we’ll add them to an evolving Vancouver Benchmarks document. You can find the latest version here