Act and Code Review consultation
Topic 3: Making the Act and the Code work better for tāngata whaikaha | disabled people
Issues
- Since the Act and the Code were first developed, there have been shifts in understanding of the rights of tāngata whaikaha | disabled people and the provision of supports and services, including in relation to mental health and addiction. The Act and the Code can be strengthened to reflect a modern understanding of disability rights, including the rights of tāngata whai ora, and of service provision.
- HDC is also seeking feedback on an earlier review, which looked at whether adults unable to consent should be able to participate in research, and, if so, what safeguards should be in place.
Updating the Act and the Code to support tāngata whaikaha | disabled people would support the Government to uphold its commitments under the United Nations Convention on the Rights of Persons with Disabilities (CRPD). Updates to the Act and the Code would also contribute to better and more equitable outcomes for tāngata whaikaha | disabled people when they access health and disability services.
What we’re doing already
Traditionally, HDC has had a Deputy Commissioner, Disability and a dedicated delegation for mental health and addiction complaints. Recently, HDC made changes to improve how we work for tāngata whaikaha | disabled people, including:
- Improving how we measure and report on disability issues;
- Monitoring the experience of tāngata whaikaha | disabled people in our complaints processes to improve accessibility and responsiveness;
- Responding to trends from complaints about disability support services and opioid substitution treatment; and
- Reviewing and updating our resources to ensure they are accessible, modern, and culturally appropriate.
Suggestions
We seek feedback on the following suggestions for the Act and the Code as they relate to tāngata whaikaha | disabled people. We also seek feedback on HDC’s draft recommendations for unconsented research.
Strengthen disability functions
Adding a legislated role focused on disability issues could strengthen oversight of complaints from a disability perspective, enhance HDC’s focus on the rights of tāngata whaikaha | disabled people and promote trust and engagement with HDC. This could include adding a reporting requirement to the Minister for Disability Issues as well as the Minister of Health.
Update definitions relating to disability
The definitions of ‘disability services’ and ‘disability services provider’ in the Act could be revised to reflect modern strengths-based concepts of disability, aligned with the CRPD.
Strengthen references to accessibility
We propose changes to the Code to explicitly reference accessibility in Right 5 (Effective Communication) and in Right 10 (Right to Complain). We also propose removing the words ‘reasonably practicable’ in Right 5 in relation to the right to a competent interpreter.
Strengthen and clarify the right to support to make decisions
We propose the following changes to clarify that a person should be supported to make decisions about their care to their fullest decision-making ability.
- Strengthen Right 5 (Effective Communication) in the Code to explicitly reference the right to support to understand information.
- Update the language in Right 7 (Informed Choice and Consent) relating to ‘competence’ and ‘incompetence’ to decision-making capacity to align with the Law Commission’s review of adult decision-making capacity law.
- Strengthen Right 7(3) to reference the right to support to make decisions.
- Update the language in Right 7(4) from consumer’s ‘views’, to ‘will and preferences’, to align with the language of the CRPD.
- Strengthen Right 7(4)(c)(ii) to make sure that the will and preferences of people who will never have legal decision-making capacity are taken into account.
Progress consideration of HDC’s draft recommendations relating to unconsented research
A review by HDC in 2019 recommended that some health and disability research that is not currently permitted should be allowed, in limited circumstances and with robust safeguards. The intent was to support greater knowledge of specific conditions and improve treatment and services for groups affected by those conditions. The next step for this review was to seek public feedback on HDC’s recommendations.
The test HDC recommended for research when people could not consent was that research could go ahead only if it posed ‘no more than minimal foreseeable risk and no more than minimal foreseeable burden’ on the consumer. Recommended safeguards included that suitable people who cared about the person could prevent their participation in the research; and that specialist ethics committees would oversee the research. We would like to know what you think of these recommendations.
Read the full 2019 report.