Submission on the H & D Commissioner's Act and Code of Rights review

Submission on the Review of the Health and Disability Commissioner's Act and the Consumers' Code of Rights - April 2004

This submission by NZORD covered just a few key areas of interest among the wider range of topics considered by the Commissioner's review. We focused on the provision of suitable advocacy services for vulnerable groups, the "right" of access to services, and the regularity of reviews of the Act and Code.
 
1 - Advocacy services.
 
We note the positive role the advocacy services have in resolving complaints, but we think the very nature of a complaints-based system leaves many health and disability consumers vulnerable to not having their problems addressed, nor resolved. In particular there are many consumers of disability support services who are significantly dependant on their service provider to attend to almost all of their needs, including communicating with others. Residents in rest homes and in supported housing for people with intellectual disability, are two key examples of consumers who may have difficulty in having their problems addressed or solved. They may have problems of significance and worthy of a complaint, but how would many of them initiate that procedure, given their disability and possibly diminished capacity?
 
Another aspect needing attention is the nature of problems that might need resolution for groups such as this. The problems may be low-level but on-going issues that create a situation of some disadvantage, but are not easily identifiable as a "problem needing to be complained about". They can thus lead to a gradual and unacceptable loss of autonomy or choice, that is very real and problematic, yet difficult to identify and quantify, and equally difficult for them to get addressed.
 
The Commissioner's statistics for complaints from disability services consumers show a very low level of use of the complaints resolution or advocacy service by such groups of people. The Human Rights Commission's statistics for disability related complaints also shows a very low incidence of complaints related to disability. There is a variety of anecdotal evidence that people with disability are effectively disempowered and disadvantaged by a complaints based system that always assumes a certain level of capacity, and perhaps also assumes a certain level of urgency and immediacy to the issue, that may not always be appropriate to the problems they face.
 
The role of their service provider as their presumed advocate can readily lead to obvious conflicts of interest, and a reduced likelihood that problems will be identified and addressed, or ever referred to a third party. Past comment from officials that standards monitoring and audit processes can address such issues, are far from reality and a poor appreciation of the typical situation of such people's lives.
 
The implication of all this is that a thorough review of how the Health and Disability Code of Rights can provide effective protection to the right of disability services consumers, needs to be undertaken. Such a review should look not only at the application of the Code and the processes followed by the Commissioner and the advocacy service, but also at what the "real world" situation is in these settings, and what systems can or should be put in place to improve advocacy and problem solving for them.
 
Many people have found that an effective process can be the establishment of permanent advocates for individuals or groups of people who have particular vulnerabilities. In some instances this is established privately, such as the Personal Advocacy Trust that provides ongoing support and advocacy to people with an intellectual disability, once their parents are no longer able to fill that role. In other situations there is statutory provision such as Inspectors of Mental Health whose mandate goes beyond individual responses to complaints, to have an ongoing oversight of service delivery and practice. The government also funds mental health consumer advocacy services to support individual and group issues, and this is another acknowledgement of specific targeting of wider advocacy services to vulnerable groups.
 
To ensure the rights of vulnerable consumers of disability services, in particular, there is a need for systems of advocacy support for those with diminished capacity or communication ability, who do not have family or others to advocate for them. The systems need to have a mandate for on-going connection with the people so there is awareness of the day to day reality of their lives, and an ability to note and respond to less than acceptable practices.
 
2 - Access to services.
 
When the Act and Code were set up there was a clear distinction that meant the Commissioner could not investigate matters of service access. This was deliberately stated to recognise the rationing inherent in health service provision in our society, the prioritisation process that would have to be set in place, and the political accountability for that. It does not seem realistic to argue that this provision should be generally opened to scrutiny and review by the Commissioner, as the key decisions are made in the government's budget, then administered by the Ministry of Health and District Health Boards. Having another level of review of the broad priorities and more detailed rationing decisions of these bodies, could only be implemented if the Commissioner was to use their own political view or priorities, and this would seem unworkable, as well as offer a level of complexity and confusion that would imply consumption of significant resources.
 
However there is one aspect of the question of service access that could usefully be added to the Commissioner's responsibilities, without upsetting the primarily political and supposedly "rational and evidence based" aspects of the rationing process. The aspect suggested is the extent to which the rights of consumers that are founded in International Law, the Bill of Rights, the Human Rights Act, and in public law processes generally, are adequately protected or addressed in the rationing process.
 
As things are presently structured, the need to ration seems to also imply that the rationing process is the beginning and end of all arguments, and perhaps assumes that within that process these more basic rights of consumers are always adequately protected. But at times there are legitimate questions raised about the extent to which rationing might deprive individuals or groups of a right that is established in these important areas of law, and which a rationing process might improperly negate.
 
There have been recent examples in ACC practice where legal challenge has overturned the practice of ACC in respect of certain entitlements, and established the consumer's right. Though there are major differences between ACC and health, the necessary rationing process in health should not be seen to take away any of these basic human rights that consumers have regarding health care and treatment, nor imply that their rights are limited to fair treatment within the rationing decisions made.
 
While there would obviously be opportunity for consumers to pursue matters through the court where there is a perceived breach of the more fundamental rights, this is unlikely to provide an accessible and timely opportunity for review of such matters. There would seem to be a good case for the Health and Disability Commissioner to have some jurisdiction to test the outcomes of the rationing process against the consumer's basic rights, to ensure that proper process has been followed, and to ensure that decisions comply with a range of tests that would be implied by public law obligations.
 
3 - Regularity of reviews.
 
There does not seem to be any good argument for retaining such regular reviews of the Act, especially in circumstances where one set of amendments is yet to be implemented while the next review is due. Likewise the regularity of review of the Code should not need to occur any more often than, say, every 10 years. There are other political or administrative process that can trigger reviews at any time if matters warrant an earlier review.

John Forman
Executive Director