Development of the Declaration
The conference took place at an important point in the history of the broader disability movement when there is an increasing focus on the need to secure real citizenship opportunities for people with disabilities. In support of this, many individualized funding programs are now operating, being planned or being put into action. While this is truly exciting, there is also the risk that the real aim - citizenship for all - will be forgotten, and that programs which claim to be individualized funding will really be no improvement on the systems which operate now. With a view to keeping these developments ’on track’, conference organizers developed a process to draw up and announce a Declaration that would identify a set of general principles which can shape how stakeholders across programs, groups, states and nations think about and implement these ideas.
large conference seemed very unlikely to agree on the ideas for a Declaration
without some help, plans were developed to have three small groups working throughout the
conference. We called them Prospectors Groups because, like people sieving a stream for grains
of gold, they were engaged in a process of searching for the special grains of truth that needed to go
into the Declaration. They did this
by making presentations and receiving feedback, attending other's sessions and
listening, and seeking out conference participants to get their views.
Although the Prospectors (and some of the other people who were supporting their work, and easily identified by a gold sticker attached to their name badge) took on the actual task of writing the Declaration, we wanted the process to be truly democratic and participatory, and to reflect accurately participants' ideas from this conference. For this reason, people attending the conference were also asked to:
record and share their own views at the Declaration area in the conference lobby;
respond to the Prospectors' ideas that were on display in the Declaration area, as well as other people’s ideas and comments that were put up in this area;
talk in person with a Prospector;
suggest to the moderator in a breakout session, if it sounded like some important general point (s) had been made or developed from discussion, that it should be sent as a message from the session to the Prospectors;
attend a feedback session on the Prospectors' ideas during the early morning set of concurrent sessions on the last day of the conference when they offered their draft Declaration statements for discussion.
Seattle 2000 Declaration on
Self-Determination & Individualized Funding
conference has been founded on the certainty that people with disabilities have
the same rights as other citizens to freedom, equality, equal protection under
the law, and control over their own lives.
These rights must be honored if people who have disabilities are to be
fully included as valued citizens in the relationships and opportunities of
people require personal supports or other services to ensure their full
citizenship and inclusion. These
supports and services must be funded and provided at a level and in ways that
uphold the rights of the individual.
conference is no less certain that these rights have often been disregarded.
Citizens who have disabilities experience oppression in many aspects of
their lives. The causes of
oppression include poverty, other people’s attitudes, and the systems of
publicly and privately funded support services, comprising –
laws, policies and regulations;
state and private sector funding bodies;
agencies which provide services.
systems operate in ways that deny control to those they are intended to serve.
Without accountability to those who require their assistance, these
systems decide how, where and with whom people shall live and spend their days.
While this situation persists, people of many nations will not be able to
exercise their rights or fully participate in their communities.
For these reasons, this conference calls on policy makers in all
countries, at all levels of government, and on agencies which provide support,
to ensure that the assistance made available to all citizens is based on the
Self-determination for people with disabilities must be the founding principle
of public policy.
2 Legislation to promote self-determination or individualized funding must be grounded in the principles of human rights and social justice.
3 Self-determination is a birthright which must be upheld by government. It is not a commodity to be delivered by services.
4 All people, including individuals with disabilities, have rights and responsibilities to live as full citizens. The barriers that stand in the way must be eliminated.
The development and implementation of policy must take account of the
interdependence of the individual; others with disabilities; the community;
6 Policy and practice must acknowledge and honor risk-taking as an essential element of self-determination and an important part of life.
7 Demands that individual self-determination should only be allowed when certain standards are met must be rejected.
8 The many contributions made by people with disabilities, which include innovation, problem-solving, improvements in accessibility, and other contributions to humanity, must be recognized.
required to support self-determination
9 People with disabilities speak from personal experience, and so with authority and expertise. Their views should be valued, and not regarded as having less importance than those of professionals.
10 People with disabilities and their families must be present and central at all planning and decision-making tables in policy development.
11 Citizens with disabilities and their supporting networks and organizations must be in charge of developing and promoting public policy which is related to the provision of supports.
12 Policy must be designed and implemented to ensure the inclusion of people who are at the risk of exclusion or disadvantage on the basis of ethnicity, culture, gender, race, religion, sexual orientation or other grounds.
13 Negative, entrenched attitudes, both within and beyond services for citizens with disabilities, must be addressed.
14 An understanding of disability as a consequence of society's organisation and other people's attitudes (the 'social model') rather than the inevitable result of the individual's impairment (the 'medical model') must be promoted.
15 Other citizens must be encouraged and educated to recognize that people with disabilities are entitled to access, accommodation and supports; and that individualized funding is the best way to target supports that meet peoples’ needs.
16 Governments must require that public funding is used to create systems which support self-determination. Such systems will be characterised by innovation, a focus on results, and employ people with disabilities and their families.
funding: Guiding principles
17 Individualized funding arrangements must allow for flexible practice within consistent guiding principles.
18 Individualized funding and planning systems must be flexible and responsive to the culture, values and preferences of each person and their family.
19 People must not be required to give up their right to acquire income and personal assets in order to access public funding for disability supports.
20 There must be universal access to funding and support, within a range of individual need which must be defined through a collaborative process.
21 Individual funding systems must include arrangements to provide assistance, where required, in the management of funding and supports, and not limit eligibility on the basis of judgments of 'capacity'.
22 The design of individualized funding systems must reflect the reasonable assumption that recipients are trustworthy.
23 Individualized funding must be recognized as a means to honor people’s vision for the future.
24 Individualized funding must be recognized for its value as an investment in people and communities.
funding: Principles for implementation
25 The funding allocated to each person should be based on their individual need, not on pre-defined and arbitrary limits.
26 Individuals must be free to pay the providers of their choice, including family members.
27 Individuals must have full control over their supports, including the planning of supports, and choosing and directing their support providers.
28 People must have a choice of budgetary and administrative support services to assist them in using and tracking their individualized funding.
29 People must be given the opportunity and support to explore options and make their own choices of sources for forms of assistance such as brokerage, advocacy, and peer support.
30 Service providers and agencies must be encouraged to endorse and apply the principles of self-determination and individualized funding; and, in an expanded organizational role, to deliver supports that minimize dependency and strengthen partnerships with the larger community to address barriers to freedom and opportunity.
31 Individualized funding systems, support services, and technical assistance services must be designed and provided so as to ensure that their forms of communication, physical and environmental characteristics, and overall quality do not undermine their accessibility.
32 Individualized funding arrangements must be straightforward and easily understood by everyone.
33 Action must be taken to encourage the recruitment and employment of people with disabilities in the administration of individualized funding systems.
34 When the success of Individualized Funding is assessed, the evaluation must take due account of the improvements in quality of life, and in particular the extent to which personal choice, control and sense of belonging are enhanced.
When proposed or implemented individualized funding systems are compared with
block-funded services, it must be recognized that block-funded services have not
been generally successful, either in terms of the efficient use of public funds,
or in the quality of life provided to the people who received the services.
You can also DOWNLOAD the Declaration as an rtf file.
Judi Chamberlin (Group facilitator)
Laurie Powers (Group facilitator)
Bruce Uditsky (Group facilitator)
to the Prospectors
planning and facilitation:
and administrative support