You have probably heard of the United Nations Convention on the Rights of Persons with Disabilities. We often just call it the Convention, or UNCRPD. Article 4.3 states that in the development and implementation of legislation and policies to implement the present Convention, and in other decision-making processes concerning issues relating to persons with disabilities, States Parties shall closely consult with and actively involve persons with disabilities, including children with disabilities, through their representative organizations.

You have probably heard of the United Nations Convention on the Rights of Persons with Disabilities. We often just call it the Convention, or UNCRPD. Article 4.3 states that in the development and implementation of legislation and policies to implement the present Convention, and in other decision-making processes concerning issues relating to persons with disabilities, States Parties shall closely consult with and actively involve persons with disabilities, including children with disabilities, through their representative organizations. This means governments must ensure people with disabilities have a meaningful say in decisions that affect us. Governments must consult us through our representative organisations.

Blind Citizens NZ is one of eight disabled persons’ organisations (DPOs) currently working with our Government to develop a partnership/engagement model that recognises the voice of disabled people. This work is still in its early stage but we hope it will ultimately lead to disabled people being directly consulted in a meaningful way when Government develops disability-related policies.

But what does it take to be a “representative organisation”? I should point out that any organisation can claim that it represents all or some disabled people, and the Government can always determine for itself which organisations it will recognise as being representative of disabled people. But still the question is important because if an organisation can legitimately claim that it does represent at least some disabled people, then that organisation can rightfully argue that under the Convention the Government must engage with that organisation and take its views into account. This is because the Convention essentially obliges states to engage with “representative organisations”.

It seems there is no clear agreement on what it takes to be an organisation that represents people with disabilities. Organisations like Blind Citizens NZ that are often referred to as DPOs believe we qualify as representative organisations because these organisations were actually formed by disabled people for the primary purpose of advocating for and speaking on behalf of their members. But there are numerous other organisations formed for a variety of reasons which might also claim they represent people with disabilities.

DPOs started to consider this question earlier this year. We believe the term “represent” implies that a representative organisation must show it has the mandate to speak on behalf of its members. An organisation cannot just presume it has such a mandate. We have developed a set of attributes or features that we believe are strong indicators that a given organisation can rightfully call itself a DPO and be recognised as a representative organisation. Briefly, some of these features include:

  • The organisation upholds and promotes the philosophy that people with disabilities have the right to participate collectively in decisions that impact on our lives (Nothing about Us without Us).
  • The organisation may focus on a single disability or it may be a multi-disability organisation. It is open to all disabled people who meet its membership criteria.
  • A significant majority of the organisation’s members are disabled and reflect its community of interest.
  • The organisation demonstrates that it has a mandate or authority given by its members to speak on their behalf and this remains paramount over any other obligations including direct service provision. For added clarification, if the organisation would refrain from speaking out, even if directed by its members to do so, for fear of putting funding contracts and relationships at risk, then probably the organisation is not a DPO.
  • The organisation responds to and is driven by the collective voice of its disabled members who reflect its community of interest.
  • Only disabled people who meet the organisation’s membership criteria may elect and vote for its governing body, and the governing body must have a significant majority of disabled people.
  • The organisation demonstrates that it has strong links to its members throughout the country, or throughout the region for a regional organisation.
  • The organisation has a variety of ways to ensure its members are informed of key decisions at both a local and national level.

DPOs readily admit that in reality it is difficult to judge which organisations are true DPOs. After all, right now some DPOs clearly do not meet these attributes. Also there are whole sectors of the disabled population that are not covered by any DPO currently in existence. But despite these limitations, we still feel it is important to define these attributes in a way that upholds the primary principle of the Convention, that disabled people have the right to speak collectively through our representative organisations on issues that impact on our lives.

Sometimes an organisation will say it represents or speaks on behalf of a group of people, or the general community may just perceive an organisation as having a representation role, even if those people haven’t in fact given the organisation that right. An organisation like the Blind Foundation (yes I think that is its name now), for example, is a charity that has developed a considerable wealth of knowledge as a provider of blindness services. For most people, the Foundation would be the first organisation to come to mind when thinking about blindness and blindness services. Such organisations must provide professional advice to whoever needs it, where that advice is founded on the organisation’s knowledge of their field of interest. But that is not the same as representation. We elect people to Parliament, to city councils and to district health boards and school boards etc, but we do not give these people a mandate to actually speak on our behalf. Likewise, we elect people to the Board of the Blind Foundation but we do not give that organisation the right to speak on behalf of blind people. In any case, organisations like the Blind Foundation are bound to think first about funding contracts with Government and arrangements with other significant donors and funders, before they might publicly speak out on some issues.

Right now, we are pretty staunch on the principle that when it comes to influencing decisions Government makes that will impact on our lives, it is crucial to identify and protect our voice which is expressed through our various DPOs.

The Government recently agreed to fund a series of meetings over the next year that will consider how a true partnership can work between Government and disabled people working through our respective organisations. These meetings have already commenced. This work arose out of discussions that occurred between the Independent Monitoring Mechanism and the Chief Executives’ group. The Independent Monitoring Mechanism consists of the Convention Coalition, which is an entity set up by DPOs to work with Government to monitor implementation of the Convention, working alongside the Human Rights Commission and the Office of the Ombudsmen. All three have an interest in monitoring implementation of the Convention. The Chief Executives Group is a group of Government Chief Executives that report on disability issues to the Ministerial Committee on Disability Issues, which in turn is where Government disability policy is set. The Independent Monitoring Mechanism has been reporting to the Government on implementation of the Convention since at least 2010. Last year it was identified that there is a need under the Convention for a mechanism for Government to directly consult with disabled people on issues that impact on our lives, through our representative organisations, ie DPOs. As a result, the Government approved this work to be carried out together by Government and DPOs to explore how a partnership approach could work.

The initial work has been on developing the Government’s next Disability Action Plan. It is expected to be approved early next year. Government agency representatives from the respective Ministries of Health, Education, Business Innovation and Employment, Social Development and Transport, the Office for Disability Issues, and ACC are working with DPOs. Organisations such as disability service providers will soon be invited to join this work.

The Disability Action Plan is now taking shape and I am doing my best to ensure it will include various actions that are directly relevant to the needs of blind and vision impaired people, as expressed in our policies.

We welcome this new initiative and at last it can be said that disabled people ourselves are having direct input into the decisions Government makes that impact on our lives.