3 March 2023
Rose Wall
Acting Health and Disability Commissioner
Act and Code Review
PO Box 11934
Wellington 6142
By email: [email address]
Tēnā koe Rose
Feedback into the scoping of the next review of the Act and Code
Thank you for the opportunity to provide early input into the review of the Health and
Disability Commissioner Act and the Code of Health and Disability Services
Consumers’ Rights.
You have asked me whether there are there any aspects of the Act or Code that we
think are not working well, or not working well for everyone. You have also asked what
changes to the Act or Code we think would best enhance the protection and
promotion of consumer rights.
In response to these questions, I have outlined below the points that Te Hiringa
Mahara would like to see taken account of in the scoping of your next review.
Language consistent with a ‘social’ rather than ‘medical’ framework
We would like you to consider whether provisions in the Act and Code need amending
so that wording is consistent with a ‘social’ framework rather than a ‘medical’
framework for rights in health and disability care and treatment services.
Further to this point we encourage you to identify principles to guide consultation on
substantive issues (as the Law Commission has done in their current consultation
relating to their review of adult decision-making capacity law1).
Risk and safety
We would like your review to consider issues of risk and safety from a wider
perspective than the ‘medical model’ prevalent in the health sector. Current practices
and/or the Privacy Act 2020
grounded in risk aversity can lead to decisions that harm people using mental health
services.
Information released under the Official Information Act 1982
1 https://huarahi-whakatau.lawcom.govt.nz/
Tū tangata mauri ora | Thriving together
Te Hiringa Mahara | DX Box SP22502, Wel ington, Aotearoa New Zealand
web www.mhwc.govt.nz | email [email address]
We note that the national conversation recommended in He Ara Oranga about
mental health and risk has been limited,2 but we think that is an important topic for
your review to consider.
Privacy and information sharing
Related to the concept of risk aversity, we think that the impact of ‘the right to have
his or her privacy respected’ as stated in the Code would benefit from review.
Feedback we have received suggests that the right to privacy often overwhelms ‘the
right to co-operation among providers to ensure quality and continuity of services,’
even if this results in negative impacts on the wellbeing of people using services.
Realising rights under the Code
Your review may benefit from considering the barriers that people face to
understanding, acting upon, and realising their rights under the Code – and whether
the Health and Disability Commissioner has the resources and powers to help
overcome these. People who experience social discrimination and disadvantage face
barriers to seeking health services, and to understanding and acting upon their rights.
This is likely to be seen in inequities in the demographic makeup of complainants who
reach out to you, when compared to the population as a whole. In short, structural
discrimination and other disadvantages mean that some people are less likely to try
to access services, and when they do, less likely to receive appropriate care, and then
less likely to access advocates or review processes when their rights are not upheld.
Focusing on complaints will miss the opportunity to make the greatest improvement
in care.
Te Tiriti o Waitangi
We think it is essential to review the extent to which the Act and Code explicitly give
effect to Te Tiriti o Waitangi in all processes. We are concerned that the Code and Act
work for all cultures and enable the experiences, needs, and aspirations of tāngata
whaiora3 to be understood in a variety of ways. This includes a te ao Māori
understanding of whānau that encompasses hapū and iwi and ways-of-being that
are drawn from taonga tuku iho (ancestral knowledge); and an individualistic view of
people as separate beings with independent rights as described in the Code.
He Ara Āwhina
He Ara Āwhina is a framework that we have developed with people’s voices about
what matters to them in mental health and wel being.4 It is based on the Institute of
Medicine’s six domains of healthcare quality. We encourage you to consider the
domains and concepts in He Ara Āwhina as you develop the scope for your review.
and/or the Privacy Act 2020
2 We note the following document published on the Ministry of Health website as a discussion prompt:
Changem Ltd. 2022. He Arotake ngā Tūraru | Reviewing risk: He kohinga kōrero | A discussion paper.
Wellington: Ministry of Health https://www.health.govt.nz/system/files/documents/publications/
Information released under the Official Information Act 1982
changem_reviewing_risk_discussion_paper_14.pdf
3 Tāngata whaiora is used to emphasise 'whaiora' the desire to 'seek wellness'. The plural tāngata
encompasses the individual and the people they determine as their whānau.
4 There are two perspectives in He Ara Āwhina that describe what an ideal mental health and
addiction system looks like: te ao Māori perspective, which was developed by Māori, with Māori, for
Māori and a shared perspective, which is for everyone. See https://www.mhwc.govt.nz/our-
work/assessing-and-monitoring-the-mental-health-and-addiction-system/
Page 2 of 3
Other points
To support the monitoring of equity in access to services and outcomes we would
like to see total ethnicity used when reporting usage statistics by ethnicity. Total
ethnicity reflects how people describe themselves. Prioritised ethnicity invariably
reduces the proportion of Pacific peoples in reporting. This can be seen, for example,
in the ethnicity reporting in the Advocacy Service’s annual report.
Also, we think language in the Code should keep up with understanding of gender
diversity. That is, using gender neutral terms such as they/them/person.
I hope the attached feedback is useful. I am of course happy to discuss this in person.
Ngā mihi nui
Karen Orsborn
Tumu Whakarae | Chief Executive
and/or the Privacy Act 2020
Information released under the Official Information Act 1982
Page 3 of 3
Who: Age Concern NZ
Karen Billings-Jensen, Chief Executive
Louise Rees, National Manager Social Connections Services
Joanne Reid, Manager Health Promotion and Policy
Hanny Naus, Professional Educator - Elder Abuse and Neglect Prevention
Date: 7 March 2023
Re:
HDC Act & Code review
Age persons is a growing and diverse population group and a one size fits all approach no
longer works. It is important that health and disability service providers factor in the needs
of Māori and Pacific Islands peoples, as wel as migrants, refugees and the rainbow
community, plus people with disabilities.
Lots of issues around the use of Right 7(4) and consent and huge issues around the use of
Enduring Powers of Attorneys.
Age Concern advocates are constantly fighting for consumers with diminished competency
to ensure that their voices are being heard and that they are not being ignored.
It is really important to protect supported decision making.
The move to online services is having a significant impact on older people. Things like
traditional landlines being substituted with broadband lines impacts their ability to
communicate and access services and emergency care when need (e.g. calling 111)
Talked about the importance of ‘digital inclusion’ – that it is an ongoing problem, not just for
older people now, but also for future generations, as tech is constantly evolving. Switching
to broadband phone connections was one particular issue for older people and created
issues for timely access to care including being able to call 111.
Also noted concern about the rural/urban divide – lots of rural providers are closing down
services and this is having a huge impact.
Aged concern advocates can have difficulty accessing residential care facilities so having the
National Advocacy Service is a good thing as it is a government funded service and providers
are more willing to work with their advocates.
Issues around consumers being able to access advocates it would be better if family
members could help support them in making a complaint.
Older people often do not feel comfortable in making a complaint, so when they do it is a big
deal.
There is a lot in the Code that is really good and it is important that this review doesn’t
throw the baby out with the bathwater.
and/or the Privacy Act 2020
It is important to encourage older people to access and use the Code and it needs to be
made as simple and accessible as possible. The cost of ordering the Code posters and other
related materials was noted.
The advocacy service is very important in this regard as it can help guide consumers through
Information released under the Official Information Act 1982
the process as well as weed out the vexatious complainants.
The more early resolution with advocacy, the better and it is important that the advocacy
service remain independent and not be “part of the system”.
There is an issue around accessing advance directives in emergency and hospital settings
which needs to be addressed.
Key issues for older people included:
-
Care needs to be affordable and timely – long waits for A&E, Hospital and GP care.
-
Legitimate health issues should not be dismissed as ‘just aging’
-
Hospital discharges should not occur at 3am in the morning – people want to feel that there
is a system that cares and that they are not just a number. It is important that aged
consumers are seen in their contexts and that providers realise that many people are on
their own.
-
Important to have services joined up so that older people are not having to repeat
themselves and it would also avoid communication breakdowns.
-
It is hard for older persons to transition into care and it is question what does it look like to
transition out?
-
There are a lot of stresses and strains on carers, a lack of respite care for carers, many of
whom say that they can’t cope but have to continue despite burnout.
Age Concern very happy to help with promoting Act and Code review through their newsletters.
and/or the Privacy Act 2020
Information released under the Official Information Act 1982
13 March 2023
Rose Wall
Acting Health and Disability Commissioner
[email address]
Tēnā koe Rose
Thank you for the opportunity to provide input into the upcoming review of the Health and Disability
Commissioner Act (the Act) and the Code of Health and Disability Services Consumers’ Rights (the Code).
As the peak industry body for the aged residential care (ARC) sector, the New Zealand Aged Care Association
(NZACA) represents over 37,000 beds of the country’s care home industry, or about 93% of the total supply. Our
members’ services include four categories of care – rest home, hospital, dementia and psychogeriatric, as well as
short-term care, such as respite. ARC is also home to around 700 younger people with disabilities and the sector
is the largest provider of end-of-life care, not only for older people but also for younger people unable to be cared
for in a hospice due to lack of capacity.
New Zealand’s population is ageing rapidly. In June 2022 there were 94,100 people aged 85 years or older; in
2042 it is estimated there will be 233,300. This major change, together with multiple factors reducing the
number of potential family carers, means that there is a corresponding year on year increase in demand for long
term aged care.
You have rightly identified that there has been significant change since the last time the Act underwent any major
update, over 20 years ago. We recommend the following be considered as you scope this review.
Health equity/ Te Tiriti o Waitangi
A principle of the Pae Ora (Healthy Futures) Act 2022 is that the health sector should be equitable, which includes
ensuring Māori and other population groups have a right to access to services in proportion to their health needs,
to receive equitable levels of service and to achieve equitable health outcomes.
We suggest this be a consideration when updating the Code, however, it is important to note that the full onus of
this cannot be put on healthcare providers, as insufficient government funding and policy settings are major
barriers to the provision of care, particularly for private providers in rural and low socio-economic regions1.
The Code of expectations for health entities’ engagement with consumers and whānau, a requirement of Pae Ora,
and/or the Privacy Act 2020
came into force in October 2022. This sets the expectations for how health entities must work with consumers,
whānau and communities in the planning, design, delivery and evaluation of health services. While some overlap
exists between the two codes, the Code of expectations incorporates Te Tiriti o Waitangi principles identified by
the Waitangi Tribunal in its Hauora Inquiry, which should also be considered in the HDC review.
Information released under the Official Information Act 1982
Ngā Paerewa Health and disability services standard NZS 8134:2021
The updated Ngā Paerewa Health and disability services standard came into effect in February 2022. Ngā Paerewa
reflects the shift towards more person- and whānau-centred health and disability services. This is the Standard
1 http://nzaca.org.nz/news/equitable-access-to-arc-report/
upon which ARC facilities, and other health and disability providers, are audited by the Ministry of Health.
Ngā Paerewa should be considered when scoping this review to ensure that the standard to which healthcare
providers are audited aligns with their responsibilities to consumers under the Act and the Code.
For example, the concept of cultural safety is one that could be included in an updated Code to align with both
Pae Ora and Ngā Paerewa.
Technology
One learning for ARC from the pandemic has been the importance of keeping residents connected with whānau
and loved ones. Unfortunately, during an outbreak (of COVID or other transmissible diseases), in person visiting
may not be possible for a time, for the safety of both residents and staff. In such a circumstance, a provider could
meet a consumer’s right to support by facilitating a support person(s) to attend virtually. Likewise, some health
services can be delivered virtually, and this is becoming more commonplace.
Technology of this type has a place in health but is it a careful balance between the rights and best interests of
consumers and its necessity for the provider to continue delivering quality care. For example, in ARC we are
seeing an increase in the use of virtual nursing, brought about by a severe shortage (around 25%) of registered
nurses (RNs) in the sector. While having a nurse on site is preferable, where it is not possible, an RN who is
familiar with the facility and its residents can be consulted virtually.
Advance directives
In the current review of adult decision-making capacity law by Te Aka Matua o te Ture | Law Commission, it has
been identified that the legal status of advance directives in Aotearoa New Zealand is unclear. The review will
consider whether the status and scope of advance directives should be clarified in law. The Ministry of Health’s
‘repeal and replace’ of the Mental Health Act is also considering the use of advance directives.
The Law Commission review is considering several issues around advance directives including how they should be
made, whether health practitioners should be required by law to follow them, and what happens if they haven’t
been updated in some time and may no longer be that person’s wish. There is also the issue of how advance
directives be accessed when they are needed and whether a central register would be useful.
We note that that the majority of people entering aged care have not prepared advance directives or an
advanced care plan. There appears to be a gap in education, with many New Zealanders being unaware of the
existence of advance directives and their rights in these situations.
Other comments
We note that the code refers to consumers as his or her and that not everyone identifies with these pronouns.
and/or the Privacy Act 2020
Again, thank you for the opportunity to provide input to shape the review and we look forward to working with
you throughout the process – please direct correspondence to Policy Analyst Rebecca Chapman at
[email address]
or
.
Ngā mihi nui
Information released under the Official Information Act 1982
Simon Wallace
Chief Executive
Kia ora Catherine,
I have a Grad Cert in Restorative Justice Practice from VUW, and recently completed the VUW
Restorative Foundations in Healthcare. My prior role was coordinating restorative justice processes in the
court system.
I refer to my VUW colleague's research and discussion document suggesting the potential for restorative
approaches in the HDC process. https://www.publish.csiro.au/hc/fulltext/hc21026
I see the update of the Act as an opportunity to introduce restorative approaches. The benefits of
restorative approaches is that it can be quicker and more meaningful for those involved (
if done properly
and safely). It can be adaptable to accommodate cultural needs, . and allows both sides to talk about all
the events leading up to an event, address the harm caused, and 'restore' the relationship and the dignity
and mana of all involved. There would need to concurrent upskilling of Advocates to be able to facilitate
conferences (some of the records I have seen of advocate meetings have NOT been restorative for the
parties). I know some DHB staff are completing training on how to hold restorative conferences.
Restorative 'justice' occurs in the court system due to s24A of the Sentencing Act:
https://www.legislation.govt.nz/act/public/2002/0009/latest/DLM6362000.html
A restorative conference can be convened when the person who has caused harm has pleaded
or been
found guilty
. The result of any restorative conference is then taken into account by the judge at
sentencing. [I can personally speak to the risks, but also the good and bad outcomes of this process].
How could a restorative process be included in the HDC process?
Where a provider accepts a departure from the Code, there could be Commissioner's discretion to refer to
a restorative process by Advocacy (or suitable DHB staff). If both parties willing, and it is safe to proceed,
a meeting could be held.
To be clear a restorative process is not alternative dispute resolution (there is no dispute, there needs to
be agreement that harm was caused, with an apology, and steps taken to prevent re-occurrence).
However, dispute over some aspects of a complaint are not entirely fatal to a restorative process. A report
from any conference held is then provided to the Commissioner for next steps. In severe departures, this
would still require breach, publication of outcome and if necessary, referral to disciplinary tribunal. The
purpose of the restorative process is to:
- fully explore all the factors that contributed to an event of harm (this can often go beyond what is
provable from an adversarial legal process, but is complementary to a 'just culture'')
- provides a safe space for both consumer and provider voice
- allow providers/consumer quick resolution within the formal HDC process
There is the potential for a restorative process at all levels of harm (for severe or mild departures). In the
criminal process, it has proven to be more successful where there has been serious offending (yet is
more likely to be referred for mild offending). Sometimes resolution can occur at the preconference stage
without proceeding to a meeting (complainant is satisfied that provider has accepted they caused harm,
and addressed causative factors). I note that the 'restorative process' for mesh (often used as an
example) has simply provided circles for the voices of victims and is not a true restorative process - yet!
and/or the Privacy Act 2020
I note there is a section of the current Act for Mediation -
https://www.legislation.govt.nz/act/public/1994/0088/49.0/DLM334135.html In my opinion, this existing
section is not appropriate for a restorative process and is unable to come within it under its current form
(mediation is for a dispute, doesn't appear to be voluntary, includes expense payments).
Information released under the Official Information Act 1982
I propose a dedicated new section, along the lines of (without being an expert legislative drafter!):
62. Restorative process
(1) Where the provider accepts there has been a departure from the Code, and the Commissioner is of
the opinion that it would be appropriate to do so, taking into account the wishes of the complainant(s), the
Commissioner may enable inquiries to be made by a suitable person to determine whether a restorative
process is appropriate in the circumstances.
(2) Where a restorative process is held, a report of any meeting is to be provided to the Commissioner to
be considered [alongside s45 outcomes - in appropriate legalese)
An alternative is to insert a restorative process within in s45 -
https://www.legislation.govt.nz/act/public/1994/0088/49.0/whole.html#DLM333992
I note something should be included in regards to reparations because providers should not see it as an
opportunity to pay their way out of a breach (ditto from consumers). It would have to work alongside the
ACC system.
In my experience, after a successful and safe conference, the harmed party often feels significant grace
towards the person who caused them harm and is focused on a rehabilitative outcome.
Anyway, I don't have all the answers, just the ideas! I hope my email this initiates some deeper thought
on how we can meaningfully incorporate restorative processes alongside our existing ones.
Nāku iti noa, nā
Alice Robinson (she/her/they/ia)
Investigator | Kaitūhura
Office of the Health and Disability Commissioner | Te Toihau Hauora, Hauātanga
Level 11, TechnologyOne House, 86 Victoria Street, Wellington 6011
Phone: 0800 11 22 33
Kia ora Catherine,
I have had another thought.
The Ministry of Education states:
"Schools providing health or disability services for their students, have responsibilities under the Code of
Health and Disability Services Consumers’ Rights (the code)."
https://www.education.govt.nz/our-work/our-role-and-our-people/contact-us/regional-ministry-
contacts/learning-support-services/making-a-complaint-about-a-learning-support-special-education-
service/#sh-complaint%20health%20and%20disability
The Ministry of Education then refers to supporting ākong with health conditions.
and/or the Privacy Act 2020
https://www.education.govt.nz/school/health-safety-and-wellbeing/health-and-wellbeing/health-conditions-
in-education-settings-supporting-children-and-young-people-2/
https://www.education.govt.nz/our-work/overall-strategies-and-policies/wellbeing-in-education/#sh-
disability%20code
Reading the existing Health and Disability Commissioner Act 1994, education disability services would fall
Information released under the Official Information Act 1982
under:
https://www.legislation.govt.nz/act/public/1994/0088/latest/whole.html#DLM333589
s2 Interpretation
"disability services includes goods, services, and facilities—
(a) provided to people with disabilities for their care or support or to promote their independence; or
(b) provided for purposes related or incidental to the care or support of people with disabilities or to the
promotion of the independence of such people"
For example this should include a teacher aide funded by the Ministry of Education Ongoing Resources
Scheme to support a student with, for example, autism. However, it is currently a grey area. The Ministry
(who holds a stewardship role, and no responsibility for what individual schools do) would refer to HDC,
but HDC currently
has no process for education disability services.
This is an opportunity to create clarity in HDC Act, but also to seek more funding and resources for HDC.
Anyway, again happy to discuss further!
and/or the Privacy Act 2020
Information released under the Official Information Act 1982
Tēnā koe Rose and the HDC office
Thank you for the invitation to provide input into the HDC Act and Code Review. I am sending this
email in my personal capacity as a lawyer who has had involvement with the Code, both in
representing clients in the complaints process but also as a legal researcher with input on policy and
research ethics.
In summary, the areas of the HDC Code which I consider are in need of review and changes to the
Code are as follows:
1. Providing a definition of competence/capacity for decision-making, and giving effect to
supported decision-making and the Convention on the Rights of Persons with Disabilities
(CRPD). Any changes to the Code would need to interface with the Law Commission’s review
of adult decision‐making capacity: Ngā Huarahi Whakatau.
2. Completing the review of Right 7(4) and non-consensual research. This review was not
completed by the previous Commissioner, despite extensive input from a wide range of
people in the health and disability sector. On my part, I interviewed key people and research
institutions in the UK as part of my NZ Law Foundation International Research Fellowship in
2015.
3. Kia mōhio ai koe, I attach:
a. Chapter 6 – Research on people who lack capacity, from my report: Mental Capacity:
updating New Zealand‘s Law and Practice (2016) www.alisondouglass.co.nz;
b. Article by myself and Angela Ballantyne in
Bioethics (2018)From protectionism to
inclusion: A New Zealand perspective on health‐related research involving adults
incapable of giving informed consent.
c. One of several submission sent by the New Zealand Law Society, Health Law
Committee (when I was Chair) seeking to follow through on earlier
recommendations from the previous Commissioner for proposed changes to the
Code. In this regard you may wish to contact the law reform committee of the NZLS
and current Health Law Committee for input into the current review.
I would be happy to meet and discuss your review if that is of assistance. I do hope that there will be
genuine action by the Commissioner to update the Act and Code.
Kia kaha
Alison Douglass
Ngā mihi nui | Kind regards
Alison Douglass
Barrister
LLB, MBHL
Barristers Chambers
| Level 3, Westpac Building
| 106 George Street
|PO Box 5117
| Dunedin 9058
| New
Zealand
Phone 03 477 3488
| Fax 03 474 0012
|Mobile +64 27 549 6161
[email address]
| www.alisondouglass.co.nz
and/or the Privacy Act 2020
Information released under the Official Information Act 1982
A voice for women's health
Morag McDowell
Rose Wall
Office of the Health and Disability Commissioner
PO Box 11934,
Wellington 6142
13 March 2023
Regarding the early input into the HDC Act and Code of Rights Review
Tēnā kōrua Morag and Rose,
The Auckland Women’s Health Council appreciates the opportunity to provide early input into your review
of the HDC Act and Code of Rights.
As you may be aware, AWHC has had a sustained interest in the HDC and the Code of Rights. We made
submissions on the Health and Disability Commissioner Act 1994, then once the legislation was passed and
the first Health and Disability Commissioner appointed, we made submissions and participated in
consultation meetings that occurred during the development of the ‘Code of Rights’. We have also made
submissions on previous reviews and other HDC topics when public/stakeholder feedback has been invited.
There are a number of issues that we believe should be considered in your review, as we set out in brief
below. There are two major concerns that have arisen in the last few years; one that was discussed in
Anthony Hil ’s review in 2019, and one that has been raised since then:
1. The ‘recruitment’ of incompetent/unconscious patients unable to provide consent in medical/health
research. After a number of communications from our then Co-ordinator, Lynda Williams, to Anthony
Hil , the former HDC issued a public consultation document on this issue, on which we made a
submission in 2017. Mr Hill released a report in 2019 in which he recommended changes, and
mentioned this in his 2019 HDC Act review report to then Minister of Health, David Clark. As far as we
are aware, nothing further has been done about recruiting incompetent/unconscious patients for
medical/health research. We believe that it is important that the Act and the Code does more to protect
some of our most vulnerable citizens from medical exploitation.
2. In 2020 and 2021 we actively supported Renate Schütte’s petition to Parliament requesting the right to
appeal decisions made by the Health and Disability Commissioner, making written and oral submissions
to the Health Select Committee. The Health Select Committee’s recommendation was that this issue was
and/or the Privacy Act 2020
best suited to consideration in the regular review of the HDC Act. We absolutely support the right for
both complainants and providers to appeal HDC decisions and refer you to our written submission in
support of Ms Schütte’s petition on our website.
Other issues we believe should be considered as part of your review:
Information released under the Official Information Act 1982
3. The delays and extraordinary amount of time it takes for decisions to be made, especially for
complainants who ultimately receive a no further action decision. These delays fail to fulfil the promise
set out on the HDC website to resolve “complaints in a fair, timely, and effective way.”
4. That so few complaints are formally investigated and so many complainants receive no further action
decisions, even when there have been serious consequences for a patient, and the fact that there is no
PO Box 32 445,
Devonport, Auckland 0744
| [email address] | www.womenshealthcouncil.org.nz
recourse for such complainants to have their complaint reviewed, as there is no appeals process.
Between 2001 and 2019, investigated complaints as a proportion of closed cases dropped significantly
from 40% in 2001 to under 5% in 2019.
5. The HDC Act needs to be amended to reflect a greater acknowledgement of te ao Māori and te Tiriti, as
is the case in much recent legislation and health agency and Government documents, in particular the
Pae Ora (Healthy Futures) Act 2022.
6. Research over recent years has shown persistent breaches of patients’ informed consent rights,
particularly in teaching hospitals. These breaches continue in the face of the 2015 consensus statement
on medical students and informed consent, prepared by both the medical schools, CMOs of the district
health boards and the Medical Council. These continued breaches of informed consent rights are a huge
concern (see AWHC August 2022 Newsletter, pp10-15). We would like to see some legislative means to
enforce informed consent rights, beyond the complaints process, as many health consumers are not
aware of their rights and/or are too vulnerable to speak up, particularly when their care occurs in a
teaching hospital. That consumers may not be aware of their rights is no justification for continued
breaches by medical staff and institutions.
7. Amendment to the Code of Rights to specifically to include gender diversity in rights of dignity and
respect; services that take into account the needs, values, and beliefs of gender diverse people; and
freedom from discrimination, coercion and harassment, exploitation, etc. Gender diversity was a barely
recognised issue when the Code of Rights was written. However, New Zealand and international research
has found that discrimination and a lack of respect and dignity in health care is a significant issue for
gender diverse people, and that their mental and physical health suffers as a result. Many in the queer
community suffer poor physical health, in part because they are reluctant to see doctors when they
need to because of past experiences. Many gender diverse New Zealanders report being misgendered,
or having their gender identity dismissed, questioned or disrespected, and their health concerns
trivialised or misunderstood, by health care professionals.
8. The need for information sharing on harm from medicines/drugs, medical devices and medical
procedures between HDC, ACC and Medsafe (or the new Therapeutic Products Regulator when the
Therapeutic Products Bill is passed into law). A number of OIAs AWHC have lodged with HDC, ACC
and Medsafe over the last few years regarding treatment injury, has shown that these agencies are
completely siloed and none of them appear to share information (anonymised or otherwise), so there is
no comprehensive understanding of the level of treatment injury.
The above points are just a very brief outline of our concerns, and we look forward to having an
opportunity to provide a more comprehensive submission on these at a later date, together with feedback
we might be able to make on any other issues that are raised in the process of your review of the Act and
the Code of Rights.
Ngā mihi nui
and/or the Privacy Act 2020
Information released under the Official Information Act 1982
Sue Claridge
Communications Manager
For the Executive Committee
Auckland Women’s Health Council
PO Box 32 445,
Devonport, Auckland 0744
| [email address] | www.womenshealthcouncil.org.nz
Dear Jane,
I write on behalf of the Cartwright Collective. Thank you for seeking our views on what we consider
should be included in consultation in the review of the HDC Act and the Code of Rights.
On behalf of the Cartwright Collective, I submitted in written submissions to the Health
Select Committee supporting the Mesh Downunder (Renate Schutte) petition seeking a right
of appeal from adverse HDC decisions. The Select Committee recommended that the
Commissioner consider this issue as part of her review of the Act and Code. Clearly that is a
key issue to be included in the review.
We recommend that the following matters should also be included in consultation and be part
of the review:
The preliminary determination process, including the policy developed by the HDC to assist
in in making NFA determinations, adoption of which was recommended by the Ombudsman.
The policy (see Factors relevant to taking no action on a complaint, on the website) has not
been consulted on, and the review presents a good opportunity to fulfil that obligation.
Consideration of providing an ability for complainants to influence the resolution pathway
chosen for their complaint
The investigation process – issues include repeated requests for the same information from
the complainant, the fact that the complainant is not given a full copy of the provisional
opinion, only the information gathered section, delays in reaching opinions on complaints.
Seeking a legislative overruling of the Marks decision, to enable non-consumer complainants
to take section 51 proceedings before the HRRT, as recommended by both Commissioners
Paterson and Hill.
Advocacy – consideration of the appropriate place of advocacy in relation to the HDC.’s
resolution processes.
We look forward to being advised of the details of the review and the opportunities for consultation.
Ngā mihi nui | Kind regards,
Jo
and/or the Privacy Act 2020
Information released under the Official Information Act 1982
22 March 2023
Rose Wall
Acting Health and Disability Commissioner
By email: [email address]
Tēnā koe Rose
Early scoping consultation – HDC Act and Code Review
Thank you for your letter of 3 February 2023 and the invitation to provide my input for the next
review of the Health and Disability Commissioner Act 1994 (the Act) and the Code of Health and
Disability Services Consumers’ Rights (the Code).
As you have sought my perspective for the purpose of informing your scoping considerations at
this stage, I have endeavoured to keep my comments fairly high-level. This is on the
understanding that there will be further opportunity to provide input as necessary once the
review is underway.
At the outset, I note your observation that it has been over a decade since any substantial
changes have been made to the Act or Code. As you say, much has changed in that time, both in
terms of New Zealand’s health and disability system and with respect to society’s values and
expectations more broadly. It is of course essential that the Act and Code remain fit for purpose in
this evolving context. My impression from your letter is that this next review will be guided by
recognition of such changes.
To that end, I anticipate that the review will consider whether the Act and Code, in their current
form, reflect contemporary developments in key areas affecting people’s rights, including in
particular:
gender and gender-neutral language;
social models of disability, including understandings of competency, decision-making
and/or the Privacy Act 2020
capacity, and supported decision-making;
the right to reasonable accommodation; and
the place of Tikanga and cultural considerations.
Information released under the Official Information Act 1982
There are also a number of matters which have come to my attention in my role as Chief
Ombudsman which I wish to highlight for your consideration which I have addressed below.
Office of the Ombudsman | Tari o te Kaitiaki Mana Tangata
Mandatory notification requirements
As you will be aware, I appeared before the Health Committee in May last year in relation to a
petition that requested that the House amend the Health and Disability Commissioner Act to give
complainants, and those who are the subject of complaints, the right to appeal decisions made by
the Health and Disability Commissioner (the HDC). In response to the petition, the Committee
encouraged the HDC to ‘
address the complexities of creating a right of appeal’, amongst other
matters, as part of the next review of the Act and Code. At the time, I confined my comments to
the Committee to clarifying the reach of the Ombudsman’s jurisdiction with respect to HDC. I do
not intend to depart from that approach here, but I understand that the question of a right of
appeal is a matter which the HDC may be contemplating.
You will recall that my submission addressed the findings of my investigation into the HDC’s
assessment of three complaints.1 These complaints were essentially concerned with the HDC’s
exercise of its discretion to take no further action on a complaint. In two of those cases, I formed
an opinion that the HDC’s decision to conclude its preliminary assessment by taking no further
action under section 38(1) of the Act was unreasonable. I found that the HDC’s preliminary
assessment processes in those cases went beyond what the Act envisaged a ‘preliminary’
assessment should involve, in practice resembling a quasi-investigation, and that this had an
undue negative impact on those involved.
While my conclusions in that investigation arose primarily out of issues relating to the HDC’s
policy and practice, this review may be an opportunity to consider whether the provisions of the
Act may effectively encourage the approach taken in those cases.
For instance, the Act’s requirement to notify the Medical Council on the commencement of an
investigation in certain cases may have contributed inadvertently towards the HDC’s preference
to undertake prolonged ‘informal inquiries’ rather than a notified investigation as a means to
avoid what the HDC saw as disproportionately adverse effects on a medical practitioner.
In these circumstances, it may be worth contemplating whether providing the HDC with statutory
discretion to decide whether to make a notification to the Medical Council when commencing an
investigation might remove any potential perverse incentive not to investigate an alleged breach
of the Code. The Act could include guidance on what factors must be considered in respect of the
threshold for notification, including imminent risk to patients or serious concerns about medical
practice or competency.
Decision-making capacity and Right 7 of the Code
and/or the Privacy Act 2020
There is an issue that I wish to raise from a disability rights perspective with regard to the current
Code and decision-making capacity. My comments in this respect reflect my role under the United
Nations Convention on the Rights of Persons with Disabilities (the Disability Convention) as part of
the Independent Monitoring Mechanism (IMM), constituted under Article 33(2), to protect and
Information released under the Official Information Act 1982
monitor disability rights in New Zealand.
1 See: https://www.ombudsman.parliament.nz/resources/investigation-health-and-disability-commissioners-
assessment-three-complaints
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Office of the Ombudsman | Tari o te Kaitiaki Mana Tangata
Supported decision-making is a key principle of the Disability Convention. This is highlighted in
Article 12 of the Convention which recognises disabled people’s right to exercise legal capacity on
an equal basis with others. All measures must be taken to respect a disabled person’s rights, will
and preferences; and to prevent abuses, conflicts of interest, or undue influence over the exercise
of legal capacity. Any restrictions on legal capacity must be of the shortest possible duration, and
be subject to independent and impartial review and oversight.
Right 7 of the Code provides for the right of consumers to ‘
make an informed choice and give
informed consent’. This right is subject to an exception, however, permitting health or disability
providers to provide services without the consent of the recipient where they have reasonable
grounds to believe that the person is not competent to make their own decisions. The exception
to Right 7 does not appear to reflect a contemporary understanding of the right to access support
to make decisions, or the shift to establishing a person’s will and preferences rather than acting in
a person’s best interests.
Where this exception can be used is also not necessarily clear, and provides services providers
with broad powers to give primacy to a substitute decision-making approach, rather than a
supported decision-making approach. This may cause issues in, for example, mental health,
intellectual disability and aged care areas.
The Law Commission’s current review of how the law should respond where an adult’s decision-
making is affected reflects a wider conversation about the need for reform in this area. In my role
as part of the IMM, I have stated that genuine fulfilment of Article 12 of the Disability Convention
requires a transformational shift in domestic legislation and practice; moving from substitute
decision-making to supported decision-making; and fully respecting disabled people’s autonomy,
and their right to appropriate decision-making support.
The United Nations Committee on the Rights of Persons with Disabilities (the Committee), in its
Concluding Observations which were promulgated in September 2022 after New Zealand’s review
in Geneva, expressed concern about the lack of progress made to abolish the guardianship system
and substitute decision-making regime in New Zealand, and the absence of a timeframe to
replace this regime with supported decision-making systems. The Committee formally
recommended that New Zealand:2
… repeal any laws and policies and end practices or customs that have the purpose or
effect of denying or diminishing the recognition of any [disabled person] before the
law, and implement a nationally consistent supported decision-making framework that
respects the autonomy, will and preferences of [disabled people].
and/or the Privacy Act 2020
The HDC may wish to examine whether the Code is sufficiently clear about when these exceptions
can be made so that primacy is given to the exploration of all kinds of supported decision-making
practices. At a minimum, I suggest that the review examine whether there are adequate
safeguards in place to ensure that any decision to engage the exception to Right 7 is properly
Information released under the Official Information Act 1982
exercised and that any risk of arbitrary detention or unconsented treatment is minimised.
2
https://tbinternet.ohchr.org/_layouts/15/treatybodyexternal/Download.aspx?symbolno=CRPD%2fC%2fNZL%2fC
O%2f2-3&Lang=en
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3
Office of the Ombudsman | Tari o te Kaitiaki Mana Tangata
Complaints and feedback
It is of critical importance that consumers can raise concerns about both their experiences while
accessing health services (i.e. to complain about instances where their rights may have been
infringed), as well as decisions made about their medical treatment. This is especially important
for consumers who are treated compulsorily under the Mental Health (Compulsory Assessment
and Treatment) Act 1992, or under cl 7(4) of the Code.
It is similarly important that complaints can be dealt with to the satisfaction of a consumer at the
lowest possible level.
Having said this, I have observed instances where potentially significant concerns about treatment
have been triaged as ‘feedback’ at a service level, due to the manner in which the concerns were
raised, as opposed to being triaged as a ‘complaint’. In such cases, there is a risk that concerns
raised may not be dealt with in the most appropriate manner. The HDC may wish to consider
whether there are sufficient mechanisms in place to ensure that complaints are dealt with
appropriately at a service level, no matter the manner in which the complaint is raised.
Finally, I understand that there is a common misunderstanding amongst the disability community
about the HDC and what it can do. To some, the designation ‘Health and Disability Commissioner’
implies that a complaint can be made to the HDC about anything broadly health or disability
related. While this may not come within the ambit of the present review, I thought it useful
nonetheless to bring to your attention. There might be some value in the HDC examining whether
the current name best communicates the scope of the HDCs functions. For instance, ‘Health and
Disability Services Commissioner’ might arguably reflect more accurately the HDC’s remit and
help to avoid any misapprehensions. Of course, there may be other more practical ways to
promote greater public understanding of the scope of the HDC’s role.
Thank you for the opportunity to provide input at this early stage in your review process. I hope
my comments are helpful and I look forward to being consulted further once the review is
underway.
Nāku noa, nā
Peter Boshier
and/or the Privacy Act 2020
Chief Ombudsman
Information released under the Official Information Act 1982
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Who: Children’s Commissioner:
Dr Kathleen Logan, Principal Policy Advisor, Advocacy
Kelsey Brown, Chief Policy Officer
Date: 1 March 2023
Re:
HDC Act & Code review + CC’s Code of Ethics
Children’s Commissioner currently working on an internal Code of Ethics following the
recent legislative change.
Advised that it has a lot of internal expertise on how to engage well with children and young
people in a thoughtful and ethical fashion.
Noted that HDC’s Code did a good job at focusing on individual rights but questioned
whether there was work to do when considering Te Tiriti and a focus on collective rights.
Noted that the Oranga Tamariki Act contained s 7AA which imposed duties on the chief
executive with respect to upholding OT’s treaty obligations. This could be a good example
for HDC to consider. Also consider the recent amendments to the Education Act.
Important to never see children’s rights in isolation – tamariki need to be seen in the context
of their whanau, hapū and iwi.
Consider the United Nations Convention on the Rights of the Child – which has a focus on
children needing protection. Consider legislative reform to include express reference to this
convention.
Other important documents to consider include the Waitangi Tribunal report on the Uplift of
a baby and the Royal Commission work re abuse in state care. Articles from Justice Joe
Williams are also of importance particularly concerning the incorporation of tikanga.
Consider Paula King’s work – Oranga Mokopuna regarding ethical co-designing and the
intersection between the individual and collective.
Consider Right 7 in the context of the right of a child to participate in decisions made about
them. Also consider Right 7 in light of Gillick competency i.e. that children may be able to
and/or the Privacy Act 2020
consent if they have the competency to do so – it need not be bound by an age limitation if
competency is present.
All agreed that it was important to keep the conversation going.
Information released under the Official Information Act 1982
Hi Catherine,
I gave this a little thought last night, and I'm not sure if there's a more official place we're meant to be
sending submissions but I'm just emailing you if that's ok.
First off, I've always thought that the max fine for offences (s73) is a pretty paltry sum - $3000. Not really
an effective deterrent or penalty in my view for people that commit the offences listed. I looked at the
Commerce Act, and it's max fine for an individual is $100,000. Even though I am not even sure how often
if ever s73 is invoked (but that's another story altogether), I would like to see the max financial penalty
increased to at least $10,000. While the max fine of $3000 may be effective in dealing with the average,
shall we say less well off providers, some providers will be very well off, and having a higher ceiling would
enable a more appropriate fine in their case should offences be committed. Also, I tried to see if this
number has ever been changed - I could not find the original Act, but in the 2007 version on
legislation.govt, $3000 is also the number. I think there's a good chance this number has never been
changed, despite usual things like inflation causing that number to become less and less meaningful over
the 30 years or so since the Act came to being. Perhaps this has never been looked at seriously because
s73 is so infrequently, possibly never used, but I am strongly for the max penalty being increased to at
least $10k.
As for the Code. It's always struck me as a bit odd that there isn't something in the Code that specifically
states the right of consumers/duty of providers to have care documented. I would say that in most cases,
investigations are most about clinical treatment and the documentation thereof. 4(1) cover the care, and
when there are gaping holes in clinical record keeping, we breach under 4(2). However 4(2) only talks
about professional standards in various areas in a general way. I would suggest that documentation
failures are by far and away the biggest reason why 4(2) is used, and so given this and the huge
importance of clinical record keeping in care and HDC's work, I find it odd that it isn't specifically
mentioned/emphasised! So I'd suggest some consideration be given to adding some detail about record
keeping to the Code, given its significant prominence in HDC's cases!
Also, I acknowledge that some of the next stuff may or may not be relevant to the Act so much as it is to
operational matters in how we apply the Act, but I'll let you be the judge of that, and for what it's worth....
I'm not sure that at HDC we regularly/consistently enough enforce the need for complainants to seek
remedy by complaining to the provider initially. My feeling is that it is probably often the case that
complainants haven't formally gone through that process with their providers, prior to HDC undertaking
action on receipt of a complaint. If that is true, I think that causes problems for HDC. At the Ombudsman
and IFSO, this is enforced and complainants are told no action will be taken as they haven't gone to the
provider/agency first for resolution, and that if they do that and no resolution is achieved and they want
investigation, they must provide a copy of the written response they receive along with the reasons they
wish the provider/agency to be investigated. Section 38(2)(e) already provides for taking this approach,
but I have a feeling that HDC might be a bit leniant or lax in applying it effectively? I think HDC should be
utilising s38(2)(e) all the time to ensure that complainants have first sought a response from their provider
first to try and resolve the complaint (where reasonable and practicable). This approach would mean that
when the complaint comes in, there is more information to assess from the get go, as we can require the
complainant to attach a written response from the provider, and the reasons they remain dissatisfied with
and/or the Privacy Act 2020
it. And because a large proportion of consumer-provider complaints can result in resolution (some with
advocacy assistance which they should be encouraged to use), a lot of the time this would help to reduce
the number of complaints that HDC is having to assess and investigate. I think s38(2)(e) already enables
us to do this (and maybe we are, but I don't think so!), but either it just needs to be applied better, or
something specific could be added to the Act.
Information released under the Official Information Act 1982
Lastly, with the same caveat as above re probably not being an Act issue, I have seen the Commerce
Commission website which outlines firmly that it just won't/can't look into all complaints. With the pressure
that hdc is under and to try to find a way through that to improve our process timeframes, i think serious
thought should be giving to adopting this kind of approach, with similar wording/reasoning that that
ComCom uses. https://comcom.govt.nz/make-a-complaint/complaint-form. For example, when I got in
touch with ComCom about a small matter one time, I just received a brief email back pretty much just
saying 'thanks for raising the concern, but after looking at this we've decided we won't be taking any
action', and reiterated some of the points on the above link. I was perfectly fine with that, and I'm sure that
there might be space for HDC to similarly close some cases quickly and easily that way, instead of by
letter.
Happy to discuss anything of the above, and thanks for reading (especially if not all is particularly relevant
to your work right now and is more for other process redesign stuff!)
Cheers
Conor Clerkin (he/him)
Senior Investigator | Kaitūhura matua
Office of the Health and Disability Commissioner | Te Toihau Hauora, Hauātanga
and/or the Privacy Act 2020
Information released under the Official Information Act 1982
Who: Consumer Advocacy Alliance
Sue Claridge (who is also a committee member with Auckland Woman’s Health Council)
Denise Astill (who is also the Executive Officer of Foetal Anti-Convulsant Syndrome NZ)
Charlotte Korte (anti surgical mesh advocate)
Date: 13 March 2023
Re:
HDC Act & Code review
Like that HDC is allowing for a long consultation period – this gives people an appropriate
amount of time to provide their responses.
It is important how HDC engages with consumers – some consumers will not engage with a
large document. CAA would like to have a sit down meeting with HDC and other related
consumer advocacy groups to get into “the nuts and bolts of things” and help these groups
understand what the key issues are and for HDC to understand the consumer perspective on
these issues.
Would like HDC to be accountable to the Code of Expectations for health entities’ with
consumers and whanau which was created under the s 53 of the Pae Ora (Healthy Futures)
Act 2022. Would also like to know how this Code interacts with HDC’s Code and work.
Would like the HDC code to be co-designed with consumers who are experts by experience.
Concerned about the ongoing harm which consumers face and would like to find tangible
solutions to prevent future harm. To that end, they discussed a ‘Red Flag’ alert which would
alert HDC to issues with a particular surgeon or a particular area of practice.
There needs to be a system, such as the ‘Red Flag’ alert, to help HDC collect data and follow
up on providers and areas causing ongoing harm. This would also allow HDC to do a deep
dive analysis on ongoing harm.
Would like to know how HDC can legislate to track ongoing kind of harm. Options could
include naming individual providers (although there was some reluctance around this) and
publishing anonymized data and trends with the focus being on how to prevent future harm.
HDC should have a function like this.
Asked whether there was a Director of Advocacy as it is unclear if one exists, and if so they
are not very visible. This role needs to have a focus on advocacy for consumers, and it needs
to highlight ongoing harm.
HDC needs to have powers to enforce change, it is not enough to provide
guidance/recommendations.
Concerned about informed consent breaches in teaching hospitals. There are still issues with
students obtaining consent despite the 2015 consensus statement between the two medical
and/or the Privacy Act 2020
schools. It doesn’t matter what comments the Commissioner makes on the matter because
she has no enforcement powers. HDC needs the ability to enforce recommendations to
ensure provider accountability.
HDC needs to be better resourced to help with active monitoring of the system to ensure
Information released under the Official Information Act 1982
compliance with recommendations and informed consent.
HDC needs to publish its guidelines for investigation – the current language on the website is
not very clear and not in laypersons language.
HDC should publish its interviews with providers in the interests of transparency – the more
transparency the better, as this helps build trust with consumers.
Real issue with consumers being fearful about lodging a complaint with HDC as it could
result in ACC revoking its compensation.
HDC takes too long to resolve complaints min of 3 years, given this delay consumers wonder
if it is worth making a complaint.
It was also noted that providers hold the balance of power and consumers are vulnerable to
that. Accordingly, it should be written into the Code that there is an equal balance between
consumers and providers.
Consumers should also receive the same level of information as providers when being asked
to respond to complaints.
There should be clear criteria for the experts HDC uses, including that they have an
appropriate level of experience/expertise. At the moment there are a whole bunch of
surgeons providing advice who do not have the right credentials.
and/or the Privacy Act 2020
Information released under the Official Information Act 1982
Morag McDowell
Rose Wall
Office of the Health and Disability Commissioner
PO Box 11934,
Wellington 6142
13 March 2023
Regarding the early input into the HDC Act and Code of Rights Review
Tēnā kōrua Morag and Rose,
The Consumer Advocacy Alliance appreciates the opportunity to provide early input into your review of the
HDC Act and Code of Rights.
Thank you so much for the opportunity to meet with Rose, Catherine and Michael on the 13th of March. We
felt it was a productive meeting and helped to clarify for us what we include and how we present our views
to you in this letter.
We have structured our submission starting with our recommended amendments to the HDC Act 1994
(Comments 1-13), including two comments on the role and functions of the Commissioner (14 and 15),
followed by our concerns with the Code of Rights (comments 16-18). Comments 19 to 30 are important
submissions on a range of issues within the HDC and the complaints process that are not issues that can or
should be addressed through changes in the legislation. The order of our comments should not be taken to
indicate priority or importance, and some issues we believe to be of utmost importance appear later in our
submission (for example, our comments on the notification, reporting and analysis of harm and treatment
injury; 19-21).
Amendments to the HDC Act
1.
Right to appeal HDC decisions. We believe that the Act should be amended to al ow both complainants
and providers to appeal HDC decisions. Both Charlotte Korte and Sue Claridge made submissions in
support of Renate Schütte’s petition to Parliament seeking the right to appeal decisions made by the
Health and Disability Commissioner, and refer you to those submissions and others in support of Ms
and/or the Privacy Act 2020
Schütte’s petition.
2.
Signatory to the Code of Expectations. We believe that that the HDC Act must be amended to require
the HDC to be a signatory to, and act in accordance with, the Code of Expectations for health entities’
engagement with consumers and whānau, as required of other health entities under sections 59 and 60
of the Pae Ora (Healthy Futures) Act 2022, and report annual y on how it has given effect to the code.
Information released under the Official Information Act 1982
3.
Tiriti Te Tiriti o Waitangi. The Act needs to be amended to reflect a greater acknowledgement of te ao
Māori and Te Tiriti o Waitangi, as is the case in much recent legislation and health agency and
Government documents.
4.
Independent review of investigations. The Commissioner has said that the rise in complaints to HDC is
unprecedented and complaints are increasing in complexity. The final decision on what ‘acceptable’
practice is, relies heavily on ensuring the Commissioner ‘gets it right’ after receiving advice from HDC
[email address] | www.consumeradvocacyalliance.co.nz | PO Box 32445 Devonport, Auckland 0744
‘expert’ advisors and assessors, both internal and external. In future, to mitigate any inconsistencies
between decisions made by different Commissioners, we feel that independent review of investigations
is warranted. Independent panels could be appointed to provide independent reviews of complaints and
decisions. The structure and make-up of panels could be model ed on the HDECs in that: the panel would
comprise medical experts, consumer representatives and medical ethicists; the panel would meet
regularly (e.g. monthly) to review and discuss complaints and decisions, having been provided with al
the (anonymised) paperwork pertaining to each complaint. An independent review panel should reduce
the number of decisions appealed (see point 1).
5.
The creation of mandatory enforcement powers. Where there are persistent breaches or infringements
of the Code of Rights, particularly by institutions, the Commissioner needs the ability to ensure
compliance. For example, ongoing breaches of informed consent rights in teaching hospitals and in the
face of the 2015 Consensus Statement on medical students and informed consent rights. There should
be provision for the Commissioner to have the power to mandate compliance with the Code of Rights.
6.
Negative implications of early, speedy efficient resolution of complaints. The focus of the HDC and
wording in the Act and Code needs to change from ‘speedy efficient, early resolution’, to ‘a prompt and
clear response, and comprehensive analysis’. Comprehensive analysis should not sacrifice timely
resolution of a complaint. Investigations have taken as long as three years, during which time the
complainant and their family/whānau have experienced greater distress waiting for resolution.
Investigations, even for complex complaints, must be undertaken in less time.
7.
Delays in making preliminary assessments. Delays in a preliminary assessment of a complaint, as well as
being distressing and frustrating for the complainant, can also delay awareness of the HDC of potentially
serious issues with providers, or unsafe therapeutic products (medicines, devices) or procedures. There
should be a clear threshold detailed in the Act which prioritises serious/severe harm events so, if needed,
the Commissioner can intervene earlier, and action can be taken to ensure further harm does not
eventuate.
8.
Independence of the Advocacy Service. We believe that if the Advocacy Service is to be truly
independent, it should compile an independent, separate annual report to be submitted to Parliament,
or to the Minister of Health. We fail to see how the Advocacy Service can be a truly independent body if
it is included in the HDC’s annual report. The Advocacy Service annual report, like the current HDC Annual
report needs to be made publicly available.
9.
Patient choice in the resolution pathway. Complainants have very little choice in the resolution pathway
chosen for their complaint. The Advocacy Service works well for minor complaints, but not for complex
ones or where serious harm is involved. We agree with the Commissioner, who has spoken about the
need to include a Restorative Justice approach to complaints resolution; however, this should be as a
separate optional service independent of the HDC.
10.
Visibility of fol ow up. We recommend that the legislation is amended to ensure greater transparency
from HDC regarding who is responsible/accountable for ensuring that improvements/ changes have
occurred after recommendations have been made by the HDC, as part of the complaints resolution
process. This is especially important for breach findings. The provider does have a responsibility to
and/or the Privacy Act 2020
ensure they have complied with HDC recommendations. However, if recommendations are made, it
must be mandatory for the HDC to ensure compliance, there should be audits of compliance with
recommendations and results of audits should be published. These audits should be unscheduled
so there is no possibility that providers can suddenly implement recommendations or alter notes or
other documents. When there has been a breach of informed consent or informed choice a consumer
Information released under the Official Information Act 1982
should be included in this audit.
11.
Greater transparency regarding the communication between the HDC and other health related
entities. The HDC and other entities involved with collecting information on patient safety and treat-
ment injury should be formally required to share information, including notifications/ complaints of
harm and PROMs, including but not limited to ACC, HQSC, MoH/Medsafe/Pharmac (or, in time, the
new Therapeutic Products Regulator). While we are aware that there will be privacy issues regarding
both the complainant and providers, it must be possible to share data so that there is a clear
[email address] | www.consumeradvocacyalliance.co.nz | PO Box 32445 Devonport, Auckland 0744
understanding across all Government health entities and agencies regarding the level of harm caused.
To ensure proper surveil ance and monitoring of the safety of therapeutic products, procedures and
providers of health care services, amendments must be made within the Act, so such obligations are
mandatory. It is vital that data and other information collected is not just col ated into anonymised
themes, but also on an individual practitioner level so repeat offenders can be identified, monitored, and
if needed, contacted by the relevant agency to prevent further harm.
12.
Transparency of complaints process/inequitable access to relevant information. There is a lack of
transparency over how decisions are made, and what evidence is used to support a decision (process).
Consumers need access to the same information that is shared with providers. The investigation process
does not currently comply with the Code of Rights, because of inequity of access to information. The
complainant is not given a full copy of the provisional opinion, nor all relevant documentation considered
as part of their complaint. Providers should not have access to more comprehensive information than
that which the complaint has access to. Not only is this unethical, but consumers are also unable to
identify if all relevant information they deem is important has been included and considered as part of
the inquiry/investigation.
13. Ethics Committees. There should be a clear overarching legal framework for research ethics committees;
their role and function to be clearly set out in primary legislation and their accountabilities to support
the National Standard for Ethics Committees and to maintain their independence. As a consumer group,
we consider it is an essential role of ethics committees to protect consumers from harm and to benefit
them and population groups previously disadvantaged by being excluded or harmed from research in the
wide range of health and disability research, to be set out in legislation or through the HDC Code. This is
a gap in our legal framework which has never been filled following the Cartwright Inquiry in 1988.
Alison Douglass would be a suitable person to work with HDC to put together a suitable policy, legal and
ethical framework. Alison is a Deputy Chair of the Health Practitioners Disciplinary Tribunal; former Chair
of the Wellington Ethics Committee; former Chair of ACART for the Minister of Health; established and
was co-Chair of the ACC research ethics committee for 10 years (Alison Douglass: ADLS). Consumer
Advocacy Alliance would be happy to put you in touch with her if needed.
Functions and Role of The Commissioner
14.
The role of Commissioner in publicly promoting and protecting consumer rights. The Commissioner has
a statutory obligation to publicly promote and protect consumer rights, and we believe the
Commissioner needs to be more visible in the public domain, especially when serious issues become
apparent and ongoing harm is occurring. It is important for the public to hear the voice of the
Commissioner, to see that the Commissioner is visibly stepping up in public and making comment on
serious issues, particularly systemic issues/breaches, repeat offenders (particularly institutions such as
hospitals) and on devices, medicines and procedures that repeatedly cause harm. This also gives
validation to those who are harmed, and misinformation can be reduced.
15.
Accountability/performance reviews of Commissioner. Often a given Commissioner may have a long
tenure, and the public have a right to be assured of competence in the decisions made. The public need
and/or the Privacy Act 2020
more information on who the Commissioner is accountable too, how the position and performance is
reviewed, and the KPIs for the Commissioner and how these are measured.
Concerns Regarding the Code of Rights
16.
Inclusivity and gender diversity. Where appropriate, the Rights set out in the code need to include
Information released under the Official Information Act 1982
gender diversity in rights of dignity and respect; services that consider the needs, values, and beliefs of
gender diverse people, and freedom from discrimination, coercion and harassment, exploitation.
17.
The right to ful y informed consent.
(a) There is ongoing inadequate provision of information to consumers about surgical mesh risks, and
risks of medicines in pregnancy. These sorts of situations emphasise the need for all health agencies
and individual health practitioners to be accountable for ensuring that all information shared or
[email address] | www.consumeradvocacyalliance.co.nz | PO Box 32445 Devonport, Auckland 0744
published is accurate. Before any information is endorsed there must be stricter scrutiny of who is
disseminating this information, whether their level of expertise enables them to provide this
information, and if this information/training corresponds to best practice and international
guidelines. Information must not be misleading as it would be interpreted by a consumer. Specifically,
it must not mislead or minimise the amount and severity of harm that has happened or may occur.
To obtain informed consent a patient must be provided with al treatment options. The BRAN1, 2
method should be endorsed by HDC:
Benefits – all the benefits of proceeding with the health care professional’s suggestion
Risks – all the risks explained to the consumer
Alternatives – advise the consumer if there are any alternatives available
Nothing – explain the likely outcomes to the consumer if they choose to do nothing
(b) Currently there are significant issues with cognitive bias in current consenting practices, and not just
with surgical mesh. The nature of cognitive bias is such that health professionals are unlikely to
present comprehensive information about alternatives to the treatments they offer. There is also no
requirement for practitioners to disclose if they are unable to provide specific treatment options
themselves. We support amendments to make this a legal requirement.
18.
The right to be ful y informed about breach findings.
(a) For the HDC to have the power to recommend or direct providers in certain decisions with breach
findings, to advise future patients that they have previously been found to have breached the Code
of Rights.
(b) Consumers should be able to request information about the competency and expertise of health care
providers, including details about any previous complaints before commencing treatment.
Notification, Reporting and Analysis of Harm and Treatment Injury
19.
The importance of a Red Flag alert. The current harm reporting and identification system is not working,
or in some cases not available. We suggest a 'Red Flag alert’ to be developed and implemented within
the HDC internal system, so HDC can use this early indicator to identify, track, and monitor repeated
harm from individuals and more widespread harm from particular health disciplines, devices or
medicines.
20.
HDC definition of serious harm. The only recourse for patients to obtain ‘justice’ is the HDC complaints
process as they do not have the ability to sue in New Zealand. Judicial hearings are traumatic and too
expensive for the average consumer, and Ombudsman investigations are of limited benefit. HDC send
few complaints to the Director of Proceedings for disciplinary action, and predominantly practitioners
are likely to face prosecution in only cases of sexual misconduct, misuse of drugs or fraud. Therefore, we
feel that HDC should closely consider what constitutes serious harm, and which type of complaints meet
the threshold for disciplinary proceedings.
21.
Annual analysis of harm data. A formal function of the HDC is to protect patients from harm. We believe
and/or the Privacy Act 2020
that regular ‘deep dives’ into complaint data, and the release of subsequent formal, publicly available,
reports are necessary. This includes looking at disparities in data between relevant health entities, and
collating and analysing patterns of complaints, breaches of rights and physical harm. It is essential that
the HDC be able to identify individual repeat offenders and vocational sectors of health care that are
over-represented. If this is currently not possible, new systems and policy needs to be created to
Information released under the Official Information Act 1982
ensure repeat harm on an individual basis can be monitored.
1 BRAN Analysis at https://qilothian.scot.nhs.uk/pc-resource-bran-analysis
2 Choosing Wisely: Shared decision making resources at https://choosingwisely.co.uk/wp-
content/uploads/2020/11/CWUK_patient_leaflet_100120-1.pdf
[email address] | www.consumeradvocacyalliance.co.nz | PO Box 32445 Devonport, Auckland 0744
Other Issues, Concerns and Recommended Changes
22.
Published guidelines on threshold of HDC investigations. More transparency is needed regarding what
the threshold is for deciding whether a complaint goes to investigation. HDC should rewrite the existing
guidelines so they contain more comprehensive, clear information that all consumers will understand.
We also strongly encourage HDC to publish ‘No Further Action’ decisions, so the public have a greater of
an understanding of the reasons why cases are not being fully investigated.
23.
Internal HDC reviews to be published. We strongly recommend that HDC formalises and publishes
internal HDC reviews. Such internal reviews need to be overseen by an independent body that can
provide a ‘fresh look’ at the complaint from someone who has not seen or been involved previously in
this process.
24.
Criteria for standards and expertise of HDC advisors/complaint assessors. Outcomes of complaints are
largely dependent on ‘expert’ opinions from advisors engaged by HDC. In our experience, and from the
consumers we are hearing from, there are concerns about whether HDC internal and external advisors
have the requisite knowledge to be able to provide a comprehensive expert opinion on some complaints.
We suggest the HDC look at how these advisors are chosen and examine the current criteria for advisor
knowledge and expertise prior to engagement. In the case of surgical mesh, many specialists (some of
whom are currently engaged by HDC and deemed ‘experts’ in such procedures) may not be competent
enough to offer expert opinion, especially if they have not met credentialing standards. This issue does
not just pertain to surgical mesh but may be found in all vocational disciplines.
In the example of Foetal Anti-convulsant Syndrome (FACS) and individual syndromes, there are currently
‘experts’ who are relying on research that is more than ten years old, instead of the much more current
information available. As well as criteria for standards, we also recommend that, in specialised cases such
as FACS and surgical mesh, as well as assessors/advisors (that meet the criteria), expert consumers are
involved in assessing the complaint. Additionally, it would be wise to ask ‘experts by experience’ which
medical/clinical experts they would recommend to be advisors on specific issues. It is often the ‘expert
by experience’ consumer who has significant knowledge of the medical condition at the heart of
complaints, and know who are the most experienced and skil ed or knowledgeable health practitioners
or clinicians in that discipline.
25.
Imbalance of power between complainants and providers. There is an imbalance in the weighting given
to consumers/complainants and the information they provide compared to that submitted by the
provider; essentially more trust or belief is placed in what healthcare professionals say compared with
what complainants say. A healthcare professional who has caused harm might have seen a consumer
years ago and have seen hundreds of patients since, yet they are believed ahead of the consumers. This
imbalance of power has a flow-on effect, causing more harm, and leading to consumers having even less
faith in a system they already mistrust. The Code of Consumer Expectations places consumers on a level
footing with their health practitioner; consumers are experts by experience.
26.
Consumer fear of lodging a complaint with the HDC. Some consumers are afraid of lodging a com-
plaint with the HDC if they are receiving supports through ACC, as they believe they will have their ACC
revoked. This fear is exacerbated if this has occurred in the past. We know o
and/or the Privacy Act 2020 f a situation in which a
family/whānau had their child’s ACC entitlement revoked as a result of going to HDC, and the whānau
then had to fight through the court to get ACC back. The family won, but at what cost? There needs to
be a guarantee that, irrespective of the HDC decision, there will be no revocation of their ACC
entitlements. For example, an HDC decision may find that a treatment injury complaint does not meet
the threshold of a breach of rights, but this does not mean that a treatment injury has not occurred, and
Information released under the Official Information Act 1982
meets the criteria for ACC entitlement.
27.
Broaden the HDC definition of disability. The current definition of disability and criteria for who fits this
category must be changed to ensure it is inclusive of all people living with a disability. The HDC must
adopt the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD); New Zealand
is a signatory to the UNCRPD and the HDC must comply with this convention.
[email address] | www.consumeradvocacyalliance.co.nz | PO Box 32445 Devonport, Auckland 0744
28.
Post decision feedback and communication with the complainant. It would be advantageous, after
receiving the provisional decision letter from HDC, that a video call between the complainant and HDC is
undertaken. This would make the complainant feel more human, valued, and respected and would be
particularly beneficial when it is a complex complaint that has taken some time to properly investigate.
29.
Customer satisfaction: To ensure the HDC is fulfilling its obligations to protect and promote consumer
rights, and that the complaints process meets the needs of consumers, engagement with consumers in
a variety of ways on a more regular basis is needed. We don’t believe that only surveys and “exit
interview” style assessments of consumer satisfaction are adequate. While they may provide some
limited understanding of the consumer experience, we recommend a more focussed “listening circle”
style of forum to review consumer experience of the complaints process, perhaps facilitated by a neutral
party to ensure that consumers feel able to speak freely about their experience.
30.
That the HDC is adequately resourced (financially and in terms of staffing and expertise) to ensure that
the volume of complaints can be dealt with in a timely manner for the benefit of both complainants and
providers, to enable other critical work (such as research into patterns of complaints) can be undertaken,
and to enable the monitoring/auditing of past breaches.
We believe that the Office of the Health and Disability Commissioner, the Code of Rights and the complaints
process are a vital and integral part of our health system. They have a critical role in not only upholding
consumer rights in the provision of health and disability services, but ensuring improved patient safety, and
contributing to positive changes in culture within our health system, and health institutions and provider
organisations.
We hope that any apparent criticisms we may have of the HDC, the Act and the Code of Rights, are taken as
our genuine desire to work with the HDC as consumer advocates; to participate in ensuring that the
complaints system, and all its parts, offer New Zealanders the very best opportunities to address breaches of
their rights and help create a better, safer health system.
Ngā mihi nui
Consumer Advocacy Al iance
Co-founders:
Charlotte Korte | Patient Advocate
Denise Astill | Foetal Anti-Convulsant Syndrome New Zealand
Kat Gibbons | Pelvic Floor Dysfunction Support NZ
Sue Claridge | Auckland Women’s Health Council
and/or the Privacy Act 2020
Information released under the Official Information Act 1982
[email address] | www.consumeradvocacyalliance.co.nz | PO Box 32445 Devonport, Auckland 0744
13 March 2023
Rose Wall, Acting Health and Disability Commissioner
Office of the Health and Disability Commissioner
PO Box 11934
Wellington 6142
By email: [email address]
Tēnā koe Rose,
Thank you for the opportunity to provide early input into the scoping considerations for your
review of the Health and Disability Commissioner Act (the Act) and the Code of Health and
Disability Services Consumers’ Rights (the Code). I have detailed below several areas that I
believe could be considered under the scope of your review. The identified areas are typically
the areas we engage with most regularly.
One area for review that you might consider in both the Code and Act is the inclusion of Te
Tiriti o Waitangi considerations and principles, as Te Tiriti is currently not explicitly considered
in either. For instance, you could consider how this legislation is aligned with the Pae Ora Act
2022 and shifts occurring in the wider Health Sector. Similarly, the Act and Code could
explicitly identify consumers from an equity and Te Tiriti o Waitangi lens and ensure advocates
have a sound understanding of Te Ao Māori.
Areas of the Act that could be considered in your review. I note that, unlike the legislation for the Chief Ombudsman or the Office of the Privacy
Commissioner, there is no provision in the Act which explicitly protects information obtained
by the Health and Disability Commissioner during an investigation from release to those who
request it. I understand this is a matter that has been raised before, and we would welcome
the consideration of an equivalent provision in the Act.
Areas of the Code that could be considered in your review. This relates to the ‘Right to Complain section’ in the Code. I note that the Corrections Act 2004
and the Corrections Regulations 2005 include provisions for managing complaints from people
and/or the Privacy Act 2020
in prison or on community sentences or orders. For the most part, these provisions align well
with the requirements in the Code. However, the Corrections Act 2004 also includes objectives
which allow for complaints to be dealt with informally or elevated to a formal stage if the
complainant chooses. The Ombudsman’s guide on effective complaint handling appears to
anticipate that agencies resolve complaints informally where possible (refer to page 9). You
Information released under the Official Information Act 1982
could consider amending the Code to allow for complaints to be resolved informally where
possible if this would be the most appropriate avenue while still allowing complaints to be
treated with the gravity required.
1
The Code also expects providers to assess whether a complaint is justified or unjustified. The
Department of Corrections (Corrections) has moved away from a binary type of complaint
categorisation, as Corrections consider it needs to recognise the nuance required for complaint
responses. The Ombudsman’s guide on effective complaint handling for agencies also does not
include this binary complaint categorisation and instead refers to updating the complainant on
the outcome. The HDC could consider amending the Code to remove the justified/unjustified
categorisation.
This feedback related to timeframes for responding within the Code (Right 10), which currently
include the requirement to acknowledge the complainant within 5 working days of receipt
(Right 10(6)(a)), provide an update within 10 working days of acknowledgement (Right 10(7))
and give further updates at monthly intervals (Right 10(4)). I note that these timeframes can
be confusing, particularly the expectation that the provider gives an update 10 working days
after written acknowledgement of a complaint. This means that the timing of the first update
will change depending on which of the 5 working days after receipt of the complaint was
acknowledged. You could consider amending the Code, so the timeframes are all linked to the
date of receipt. If changes to the timeframe are considered, we would appreciate further
discussion about them and for your team to consider alignment with the timeframes in the
Corrections Act and Regulations.
The Code also requires that within 10 working days of a complaint, the provider must (if they
decide more time is needed to investigate the complaint, and that time is more than 20
working days) inform the consumer of that determination and the reasons for it.
The timeframe of ‘more than 20 working days’ appears to be arbitrary, as (Right 10(7)(b)(i))
already requires the provider to determine how much additional time is needed in all cases. It
might be simpler if this was re-framed, so the provider must inform the consumer of the
timeframe determination and the reasons in all cases (rather than just the subset of cases
where the determined time is longer than 20 working days).
It may also be helpful to look at re-framing the language in this section to clarify that the other
timeframe is an estimate. Investigating a complaint can often uncover other lines of inquiry,
which may not have been anticipated when providing the original timeframe estimate. This
suggests that responders to complaints cannot reasonably be expected to determine the exact
amount of time required to respond to every complaint.
Thank you again for engaging me as a key stakeholder in this work, please do hesitate to reach
out to discuss any of the feedback, and I look forward to engaging on this work further as the
review progresses.
Ngā mihi nui
and/or the Privacy Act 2020
Information released under the Official Information Act 1982
Dr Juanita Ryan
Deputy Chief Executive Health
2
Donald Beasley Institute feedback Sept 2023
Health and Disability Commissioner’s review of the Health and Disability
Commissioner Act and the Code of Health and Disability Services Consumer’s
Rights.
Our views on the review on the Health and Disability Commissioner Act and the Code
of Health and Disability Services Consumer’s Rights (the ‘Code’) (we wil be focusing
on the Code) are detailed below. Our views are informed by previous projects that
have focused on access to justice and supported decision-making as wel as
decades of providing support and advice to disabled people and their family, whānau
and disability support professionals who are engaged in health and disability systems
in Aotearoa New Zealand.
The review of the Health and Disability Code is timely. The Code must have a louder
voice for disabled people than it currently does. The lived experiences of disabled
people should be considered throughout this review, with the disability community
being consulted on al elements of the review. Below we wil consider aspects of the
Code and changes that could be made to improve it in order to enhance the
protection and promotion of consumer rights, particularly those of disabled people.
1. Consumers have rights and providers have duties:
• It notes under this section that every provider must take action to – (a) inform
consumers of their rights; and (b) enable consumers to exercise their rights.
• This Right should consider the unique communication needs of disabled
people and therefore include: “inform consumers of their rights in a format they
understand including where practicable through use of a competent
interpreter, augmentative and alternative communication technology and
accessible formats”.
2. Rights of consumers and duties of providers:
and/or the Privacy Act 2020
•
Right 1: Right to be treated with respect:
o Under this Right, every consumer has the right to be treated with
respect, have a right to have his or her privacy respected and to be
provided with services that take into account the needs, values, and
Information released under the Official Information Act 1982
beliefs of different cultural, religious, social, and ethnic groups,
including the needs, values and beliefs of Māori.
1
Donald Beasley Institute feedback Sept 2023
•
Right 2: Right to freedom from discrimination, coercion, harassment, and
exploitation:
o This right should include “ableism” and “disablism” in the list of
experiences consumers have a right to be free from. This would
explicitly recognise the experiences of disabled people and enhance
protection from ableist and disablist assumptions, actions and
attitudes, within the health and disability system.
•
Right 3:
Right to dignity and independence:
o Right 3 focuses on the independence of the individual. Whilst
independence is important, to align with Te Tiriti o Waitangi and the
views of tāngata sai’ilimalo – Pasefika disabled people, this Right
should also include whānau, aiga and family in order to move away from
ableist conceptions of personhood, which emphasise individual abilities
and capacity. Many disabled people wish to include their natural
supporters and support systems when engaging with the health system
and making decisions related to their health and disability.
o To recognise the lived experience of disabled people relating to the
need for support, Right 3 could be reworded to say:
§ “Every consumer has the right to have services provided in a
manner that respects the dignity and independence of the
individual as wel as the individual’s place within their support
system”.
•
Right 4:
Right to services of an appropriate standard:
o This section notes that “every consumer has the right to have services
provided that comply with legal, professional, ethical, and other relevant
standards.”
o Alignment of the United Nations Convention on the Rights of Persons
with Disabilities (‘UNCRPD’) with the Act and Code should be
considered within this review. Right 4 should highlight the importance
of services complying with the UNCRPD in order to overtly
acknowledge the rights of disabled people who are significantly
impacted by the Code of Health and Disability Services Consumer’s
Rights.
and/or the Privacy Act 2020
o We believe that Right 4 should therefore be amended to include a
subsection stating the fol owing:
§ “Every consumer has the right to have services provided in a
manner which is consistent with the United Nations Convention
on the Rights of Persons with Disabilities”.
Information released under the Official Information Act 1982
o Incorporating the UNCRPD in domestic regulations would significantly
enhance the rights of disabled people within health and disability
systems. It would also create incentive for more health and disability
providers to engage in education and training relating to the treaty,
2
Donald Beasley Institute feedback Sept 2023
understanding their services through a disability lens, and disability
rights general y.
•
Right 5:
Right to effective communication:
o The specific communication needs of the disability community should
be considered in the review. Right 5 should include mention of
accessible formats as wel as augmentative and alternative
communication technology. The use of such formats is crucial for
successful communication with many in the disability community.
o To respond to this gap, Right 5(1) could be amended to say:
§ “Every consumer has the right to effective communication in a
form, language, and manner that enables the consumer to
understand the information provided. Where necessary and
practicable, this includes the right to information provided in
accessible formats and through augmentative and alternative
communication technology, as wel as the right to a competent
interpreter.”
•
Right 6: Right to be ful y informed:
o This Right requires that every consumer have the right to information
that a reasonable consumer, in that consumer’s circumstances, would
expect to receive.
•
Right 7: Right to make an informed choice and give informed consent:
o Right 7 provides a process by which a consumer can be identified as
lacking competence or having only a certain level of competence
(diminished competence). Others (whether it is a supporter or the
service provider) can then consent on the consumer’s behalf where it is
“in the best interests of the consumer”; and “reasonable steps have
been taken to ascertain the views of the consumer”. Right 7 therefore
enables substituted decision-making to take place. This means that the
consumer is not involved in the decision-making process.
o Substituted decision-making does
not protect disabled people’s rights
and denies a person their legal capacity and personhood. Personhood
has been associated with values such as choice, self-determination and
autonomy.1 It is our experience that when
supported decision making
takes place, which is underpinned by a focus on a person’s rights, wil
and/or the Privacy Act 2020
and preference (as opposed to an approach which presumes what a
person’s ‘best interests’ are) then positive outcomes will be the result.
o Supported decision-making should therefore replace substituted
decision-making, even in cases where someone’s views are difficult to
Information released under the Official Information Act 1982
obtain. This approach is advocated for by article 12 and 13 of the
UNCRPD, which require states parties to recognise the legal capacity
1 Goodley, D., & Runswick-Cole, K. (2016). Becoming dishuman: thinking about the human through dis/ability.
Discourse, 37(1), 1 – 15.
3
Donald Beasley Institute feedback Sept 2023
of al disabled people and to ensure access to justice for disabled
people, including through the provision of procedural and age-
appropriate accommodations. Further information regarding supported
decision-making can be found in an integrative literature review we
completed on this subject.2
o The New Zealand Government has ratified the UNCRPD in 2008 and its
Optional Protocol in 2016 and therefore has an obligation to provide
accommodations to support disabled people to exercise their legal
capacity through supported decision-making processes. When
examined by the UN Disability Committee in 2014 and 2022, in both
reporting sessions the New Zealand Government was chal enged to
address its failure to replace substitute decision-making in al its forms,
including in the health and disability sector.
o We believe that in this review you should be considering how the Health
and Disability Act and Code can shift from a substituted decision-
making regime to a supported decision-making regime. In order to
make this transition, the fol owing revisions could be considered:
§ Right 7(2): “Every consumer must be presumed competent to
make an informed choice and give informed consent”.
§ Right 7(3): “Where a consumer has affected decision-making,
that consumer retains the right to make informed choices and
give informed consent.”
§ Right 7(4): “Where a consumer is deemed to have affected
decision-making, that consumer has the right to make their
decision with the help of a formal decision-making supporter and
/ or whānau, aiga, family and firends.”
o “Affected decision-making” should be defined in the definitions section
of the Code and could replace “diminished competence” or “lacking
competence” as it recognises that though some may require support to
make decisions, they retain their legal capacity.
•
Right 8: Right to support:
o This Right states that consumers have the right to have one or more
support persons of his or her choice present, except where safety may
be compromised or another consumer’s rights may be unreasonably
and/or the Privacy Act 2020
infringed.
•
Right 9: Rights in respect of teaching or research:
o Right 9 states that the rights in the Code extend to those occasions
when a consumer is participating in, or it is proposed that a consumer
Information released under the Official Information Act 1982
participate in, teaching or research. Therefore when someone is
deemed as lacking competence and are viewed as being unable to give
2 Mirfin-Veitch, B. (2016).
Exploring Article 12 of the United Nations Convention on the Rights of Persons with
Disabilities: An Integrative Literature Review. Donald Beasley Institute: Dunedin.
4
Donald Beasley Institute feedback Sept 2023
informed consent and when it is seen as being in their “best interests”,
Right 7(4) of the Code al ows the person to be enrol ed as a participant
in research. This is problematic, as this substituted decision-making
process al ows other people to decide for disabled people whether they
are enrol ed in research or not, denying that person autonomy.
o As noted when discussing Right 7, we believe that through supported
decision-making strategies disabled people with affected decision-
making can be supported to make decisions, this includes whether they
consent to engagement in research.
o The National Ethical Standards on Health and Disability Research and
Quality Improvement (the ‘Standards’) note that protection of disabled
people from exploitation and undue influence in research must take
place but must be proportional to the degree to which it affects a
person’s ability to act on their wil and preferences. The Standards
support the use of a person-centred, supported decision-making model
regarding informed consent to participate in research, stating the
fol owing (p. 54):
§ “As a default position, researchers should take al people,
regardless of disability, as having the capacity to provide
informed consent.”
§ “Where researchers have reasonable grounds to believe that a
disabled person cannot by themselves give informed consent,
they should provide that person with access to the support
required to do so. It should be noted that almost any person, with
the right support, is capable of providing informed consent.”3
o The Standards do however, note that there is a group of people who
cannot provide informed consent to participate in research. We believe
that when research aligns its conduct with the UNCRPD (specifical y the
principles laid out in Article 3 and Article 12 and 13) there is a way
forward, however the level of reform this requires appears to have been
deemed out of scope for the review.
and/or the Privacy Act 2020
Information released under the Official Information Act 1982
3 National Ethics Advisory Committee. (2019).
National Ethical Standards Health and Disability Research and
Quality Improvement. Wel ington: Ministry of Health.
5
Donald Beasley Institute feedback Sept 2023
•
Right 10: Right to complain:
o Right 10 states that consumers have the right to complain about the
provider in any form appropriate to the consumer. The communication
needs of the disability community should be considered when reviewing
this Right as disabled people need to have access to complaints
procedures. We believe that Right 10 should include an additional
subsection stating the fol owing:
§ “Every consumer has the right to effective communication
throughout the complaint process, in a form, language, and
manner that enables the consumer to understand the information
provided. This includes the right to information in accessible
formats, information that utilises augmentative and alternative
communication technology as wel as the right to a competent
interpreter”.
and/or the Privacy Act 2020
Information released under the Official Information Act 1982
6
From:
"Rachel Hargreaves" <[email address]>
To:
"[email address]" <[email address]>
Cc:
"Lachlan Keating" <[email address]>
Date:
07/03/2023 08:49 a.m.
Subject:
HDC Review - Deaf Aotearoa's feedback
CAUTION: This email originated from outside of the organisation. Exercise caution when opening
attachments or clicking links, especially from unknown senders.
--------------------------------------------------------------------------------------------------------------------------------------
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Hi Jane,
Thank you for asking for Deaf Aotearoa’s early input into the scoping of the review of the Act and
Code. Our key points are as follows.
We note that the purpose of the Act is ‘to promote and protect the rights of health consumers and
disability services consumers…’
Our main comment on the Act is that the ‘promotion’ aspect is not working well. We haven’t seen
any promotional activity, and if there has been any, we haven’t seen it in NZSL. It is safe to say that
many people in the Deaf community have little or no awareness of the Act and its purpose. Similarly
with the ‘protecting of rights’ aspect, the Act has had little impact on Deaf people’s right to full
access to information on an equal basis with others.
We note that the Commissioner must have the ability to recognise ‘the social, cultural, and religious
values of different cultural and ethnic groups in New Zealand’. And yet resources do not reflect Deaf
culture or Deaf worldview.
In terms of the Code, the rights remain valid. However, there are gaps in implementation. For Deaf
people, the key ones are:
Right 2: the right to freedom from discrimination, coercion, harassment and exploitation
Right 5: the right to effective communication
Right 7: the right to make an informed choice and give informed consent.
We have many examples of discrimination on the basis of communication barriers, lack of on-call
qualified interpreters to ensure effective communication is upheld in all situations, especially those
where consent is being sought. Deaf people have to explain their rights over and over again each
time they attempt to access health and disability services because staff do not know, or dismiss, the
importance of timely and effective access to information.
and/or the Privacy Act 2020
We recommend that these issues are in the scope of the review. New Zealand’s health and disability
services workforce must upskill themselves to demonstrate Deaf cultural competency, in the same
way as tikanga Maori is being considered across the system.
Information released under the Official Information Act 1982
Is the role of the Health and Disability Advocacy Service included in the scope of the review? If so,
we recommend the re-establishment of the Deaf Advocacy roles.
Thank you. We look forward to seeing the results of this scoping exercise.
Policy & Advocacy Manager
Rachel Hargreaves |
Level 9, 342 Lambton Quay
, Wellington
, New Zealand
Mobile
| Web www.deaf.org.nz
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and/or the Privacy Act 2020
Information released under the Official Information Act 1982
Preliminary Thoughts on Health and Disability Review 2023
From Death Without Debt
1st of March, 2023
Dear Catherine,
Thank you for your email of 19th December 2022, inviting Death Without Debt to send
through any thoughts on what Commission should consider in it's review by March 10,
2023
Attached is a simplified briefing on the issue. In short:
One After-death duty of care appears to be a grey area for the Commission and a little
considered. Commission HQ has advised Death Without Debt the Commission can
indeed cover after-death care but this is contradicted by Commission advocates on the
ground who tell people they have no remit to help people in these cases.
There is a clear case the Commission should explicitly include after-death duty of care
within it's remit.
Two Currently standard practice consitutes a significant failure on the part of the health
sector. This failure has occurred slowly and over time but nevertheless has had serious
consequences. There are also Treaty of Waitangi implications.
Three The essential problem is simple. Government paperwork requirements coupled
with neglect and disinterest on the part of the medical profession are trapping the public in
the funeral industry's business model and this leads to funeral debt. Claims by the Ministry
of Health, to Death Without Debt, that their proposals for a reformed medical referee
system will address our concerns contradict both common sense and research by
ourselves and Health Literacy NZ. It also contradicts the experience of NGO's dealing with
poverty and funeral industry entrapment.
Four The needed reform is simple. Doctors would simply complete the relevant pre-
disposal paperwork on behalf of the family and inform the whanau or executors adequately
about the processes and the choices available to them. This process takes mere minutes.
and/or the Privacy Act 2020
We know, we've had doctors trial it. Doctors and nurses Death Without Debt have
approached with this solution are supportive.
Sub-standard after-death care, by definition, affects all New Zealanders, yet the
Information released under the Official Information Act 1982
Commission are unfamiliar with this issue.
Because most people, even, perhaps especially those engaged in policy analysis, are
operating on incorrect assumptions on this issue, a review team relying on voluminous by
correspondence is likely to fail.
We therefore propose a seminar where the Commission can put faces to the issues and
hear from people dealing with the fallout from the medical fraternity's oversight.
Face to face time will allow a common understanding to be built up. Your questions,
reservations and clarifications to be dealt with smoothly and quickly in a way that email
and documents simply don't allow.
We propose, after such a presentation, to supply a full written submission which will then
have a wider, and, vitally, a human context.
We look forward to your acknowledgement of this letter and to your engagement.
Please note I am away from the 3rd of March to April 2nd and will only occasionally be
checking my email.
Fergus Wheeler
Convenor
Death Without Debt
www.deathwithoutdebt.org
[email address]
The need for the Health and Disability commission to
explicitly include after-death care in it's remit
A brief outline
Contents:
1) Summary:
2) About Death Without Debt
3) Why after-death care should sit within the health and disability code's remit.
4) Background:
a) Entrapment by official paperwork requirements
b) Case studies
c) Failings of current after-death care relative to the H and D code
d) The significance of the problem and the Treaty of Waitangi
e) Why the current MoH review of legislation does not address
and/or the Privacy Act 2020
the basic issue
Information released under the Official Information Act 1982
1) Summary
Current standard practice by the attending medical professional at a death fails the Health
and Disability Code on multiple points. That this failure is universal doesn't make it
acceptable.
The argument, put forward by H and D advocates that the Code only extends up to death
but not beyond is not sustainable. In any case the Health and Disability Commission H.Q.
itself accepts the code can cover after-death duty of care.
The current sub-standard level of after-death care constitutes a likely breach of the Treaty
of Waitangi.
Steps required of the Health and Disabilty Commision to put the wider, but also the Treaty-
specific issues right include:
1. Explicit inclusion of (limited) after-death care in the Health and Disability Code
2. Engagement with the legislative process as the Burial and Cremation bill makes its
way through the house
3. Active guidance and training for all Health and Disability Commission staff and
advocates on what adequate after-death care looks like.
4. Engagement with the medical fraternity over what adequate after-death care looks
like from their point of view.
5. Engagement with the Ministry of Health on the part they need to play in bringing the
medical profession after-death care up to standard.
6. Engagement with the public, including different ethnic communities, NGO's and
churches as to what they are entitled to expect with after-death duty of care.
7. Engagement with Maori as to what they are entitled to expect.
8. Engagement with both independent and industry-aligned undertakers, funeral
directors, funeral guides etc as to their role in protecting the rights of patients and
their families.
About Death Without Debt
and/or the Privacy Act 2020
Death Without Debt was formed in 2020 to address the root causes of funeral debt. Our
committee consists of health professionals and people working on poverty issues.
Supporting organisations include Community Law, Salvation Army and Grey Power.
Information released under the Official Information Act 1982
Our first action was to submit to the Ministry of Health's review of Burial and Cremation
Law.
Why after-death care should sit within the Health and Disability Commission's remit.
In the field of common sense, which is where the expectations of the public lie, the issue is
simple: The public should not be forced, by difficult or unfamiliar official paperwork
requirements to become dependent on the funeral industry for negotiating those
paperwork processes.
Arguments against answered:
a) The Health and Disability Code only addresses
individual patient' rights. Whanau and/or
close friends are advised of individual patient's post-operative results, of births, are asked
to act in situations where the individual patient is unable to communicate or make
decisioins themselves, and so on. The medical fraternity and Commission need to be
consistent when applying the Code and include after-death care despite it not being strictly
a patient issue. The Commission is often involved in cases where the treatment of the
family by the profession is at issue.
b) The Code only covers strictly medical practices. As above. At birth, it is naturally
assumed the health-profession will support the whanau in arranging birth certification and
so on.
c) The medical profession and the Code don't cover currently cover after-death duty of
care. After-death duties are in fact part of doctors' and nurses' job description.
These duties include confirmation of death and certification of cause plus advice to
the family and/or executors about how to proceed once the doctor or nurse leaves.
Should a doctor or nurse fail to adequatly execute these basic tasks, it is
unimaginable that they would get away with it under the current Code. All that is
proposed here is for existing after death care to be extended by a couple of minutes
and done properly.
d) After death duty of care has never been an issue before now. The public are unaware
of what they
should be entitled to because of poor current medical practice. Most have no
idea there could be any alternative to the current practice of being referred automatically to
the funeral industry. Therefore it does not occur to most people to complain. In the rare
event they do, they are turned away by H and D advocates.
Since death is unavoidable, and the after-death paperwork requirements compulsory, the
onus should be on the state to ensure individuals and family/whanau are not forced by
these requirements into a position where they can be exploited.
and/or the Privacy Act 2020
When a patient dies their rights need to be transferred (albeit briefly) to the family,
executor, friend or whoever is responsible for the body.
Information released under the Official Information Act 1982
Background
Entrapment
At present, the public have, effectively, no choice but to engage the funeral industry to
complete basic pre-disposal paperwork requirements. Pre-
cremation paperwork is
particularly problematic. Pre-
burial paperwork requirements, while easier to negotiate, are
seldom attempted because of a systemic bias towards funeral directors and against any
attempts by the public to organise the legal and practical sides of the funeral processes
themselves. Most professions and agencies have defaulted entirely to the funeral sector.
How the system is currently experienced
The need for an extension of medical duty is best understood by simply reading DWD’s
submission to the Ministry of Health’s Review of Burial and Cremation Legislation - in
particular case studies #2 and #3. These are available on our website:
https://www.deathwithoutdebt.org/resources
How current after-death care measure up against the Health and Disability Code
Current standard practice fails on nine of the Code’s ten points.
Right 1
The right to be treated with respect. Currently those attempting to bypass the funeral
industry by attempting to fulfil paperwork requirements themselves are often regarded with
hostility by workers in the health and social work sector. More importantly, respect implies
consideration, and very little consideration or support is currently given to whanau
attempting to avoid funeral debt by avoiding the funeral industry.
Right 2
The right to freedom from discrimination, coercion, harassment, and exploitation.
As above; the public should have the right to be protected from predation by the funeral
industry, by,
a) Not being put in a position of dependency on them by official paperwork
requirements,
b) Not having to engage with unregulated businesses at a time of great vulnerability
c) Receiving adequate information on the funeral process.
and/or the Privacy Act 2020
Right 3
The right to dignity and independence. People should have the right to be free of the
funeral industry for official paperwork requirements because research clearly shows that
once funeral directors are engaged to do the paperwork, very few families suceed in
regaining independence for the rest of the funeral process. Official paperwork
Information released under the Official Information Act 1982
requirements entrap people in the funeral industry's business model.
Right 4
The right to services of an appropriate standard. A
t present no support or information
is normally offered regarding the funeral process other than a referal to the funeral
industry. Although this is standard behaviour on the part of the medical profession, this
behaviour nevertheless fails to provide duty of care
Right 5
The right to effective communication. No information on the funeral processes and the
financial risks of engaging the funeral industry are currently provided to patient’s families
Right 6
The right to be fully informed. Ditto.
Right 7
The right to make an informed choice and give informed consent. Ditto
Right 8
The right to support. Ditto
Right 9
Rights in respect of teaching or research. N/A
Right 10
The right to complain. Complaints about after death care cannot at present be made to
the Health and Disability Commission as advocates claim after-death care is not covered
by the Commission. Complaints to medical professionals themselves are turned down or
ignored.
The significance of the problem and the Treaty of Waitangi
According to Stats NZ’s Household Economic Survey for the year ended June 2019, more
than one-third of Maori households (37%, or 88,000 Maori households) and nearly half of
Pasifika households (47%, or 36,000 Pasifika households) would not be able to pay
$1,500 as an unexpected expense, let alone a full funeral and associated costs in the
region of $10,000. The corresponding figure for non-Maori non-Pasifika households is
16%.
These figures are sourced by Commissioned Research from Stats NZ.
Given Maori households are clearly disproportionately affected, there are clear Treaty
implications.
Why the current moh review of legislation will not address the basic issue
and/or the Privacy Act 2020
The Ministry of Health is reported to have finished its review of the burial and cremation
legislation.
The review was begun by the Law Commission in 2010.
Information released under the Official Information Act 1982
Both the Ministry of Health and the Law Commission looked at possible regulation of the
funeral industry, but missed the fundamental question which should have preceded that
work: “Why are the public so dependent on the funeral industry in the first place?”
The answer is equally simple: To bury or cremate someone, the public are forced by a
number of obstacles into a relationship of dependency with the funeral industry.
The issue was likely overlooked because NZ's medical community and social agencies
and staff have, almost without exception, defaulted to the funeral industry. Hiring a funeral
director is simply people are supposed to do. It is the only thing advised.
If the Law Commission and the MoH did look into the issue of people DIYing (DIY = Do-It-
Yourself) their own funeral processes at all, they would have found assured bypassing
funeral directors is, in fact, possible en-route to burial. Actually, only a tiny number of New
Zealanders:
- Are aware of this
- Confident enough to actually do it
- Have the necessary support.
In any case, 70% of New Zealanders opt for cremation. Bypassing funeral directors for
cremation is almost impossible and this has cemented in current attitudes and practice for
both cremation and burial.
Although government and private publications and websites say organizing your own
funeral process is entirely possible, this is seldom the case. There are very real obstacles
in the process that are glossed over.
It is believed that while the Ministry of Health, have, in their review gone some way, with
their proposals, to fix problems with the medical referee system. However the MoH have
not addressed the fundamental problem of duty-of-care for whanau/family etc.
In the past the MoH argued (to Death Without Debt) that a public register of medical
referees will ensure anybody who wants to DIY a funeral process will be able to do so
without being dependent on a funeral director.
This flies in the face of the experience of grass-roots poverty campaigners, Death Without
Debt's research interviews and the findings of Health Literacy NZ which show most New
Zealanders will have no chance of knowing about, let alone executing their supposed
choices in the after-death setting.
In other words, the need for the Health and Disability Commission to advocate for
sufficient after-death duty-of-care remains despite the partial reforms proposed by the
MoH.
and/or the Privacy Act 2020
Information released under the Official Information Act 1982
From:
"Deon York" <[email address]>
To:
"[email address]" <[email address]>
Cc:
"Jane Carr-Smith" <[email address]>, "Janice Wilson"
<[email address]>
Date:
09/03/2023 03:58 p.m.
Subject:
Seeking early input into HDC’s Act and Code Review
CAUTION: This email originated from outside of the organisation. Exercise caution when opening
attachments or clicking links, especially from unknown senders.
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Kia ora Rose,
Thank you for your correspondence of 3 February 2023: Seeking early input into HDC’s Act and
Code Review. The Health Quality & Safety Commission (HQSC) welcomes the invitation to
comment early.
An early observation would be that the review of the HDC code offers an opportunity for both
the HDC and HQSC to have clear guidance about the differences between the Code of Rights
and Code of Expectations. To date there have not (to our knowledge) been any complaints
about breaches of the code of expectations and wonder whether this new code has been
referenced in any complaints your office receives?
Appreciating that you are not at the public consultation phase yet, I shared the questions posed
in your correspondence to Te Kāhui Mahi Ngātahi, our consumer advisory group (CAG) to the
board and we discussed it briefly at our last meeting. I have summarised early thoughts from the
CAG (these centre on provision of mental health and addiction services):
A critique of mental health care in Aotearoa is that the UNCRPD isn’t always honoured.
The Code seems like an appropriate place to be explicit on this point.
Section 6. Other
Rights could be strengthened in this regard.
How is this review considering the Law Com review of adult decision-making capacity
(closed 3 March)? Right 6 and Right 7 both have inconsistencies with the current
decision-making capacity approach and the Mental Health Act (MHA). Particularly, Right
7 (2) as we know in practice the MHA takes a biased and medically orientated approach
to competency, and Right 7(7) is not aligned with the current MHA at all.
Right 7(5) regarding advanced directives could be expanded. Again the Law Com review
could be a valuable addition here but at a minimum this should require advanced
directives to be honoured.
and/or the Privacy Act 2020
Under Right 8 (Support) and 10 (Complaints) there could be a greater emphasis on peer
support or peer governance.
Challenges with mental health care not meeting the code of rights, and a lot of the
Information released under the Official Information Act 1982
conversations about risk, and practitioner-perceived risk, is reinforced by Section 5 –
Other enactments. This essentially makes the Code optional if a practitioner justifies
their actions by following the interpretation of another act. Core complementary
legislation such as the current MHA, or a future revised MHA should be referenced and
integrated explicitly. Again, Section 6 could be written to strengthen a consumer’s
understanding of rights.
I welcome further conversations. Please let us know how we can be of further assistance.
Ngā mihi,
Deon
Deon York (he/him/ia)
Director | Tumu whakarae – He Hoa Tiaki
Consumer and whānau engagement
Health Quality & Safety Commission
DDI:
M:
[email address]
www.hqsc.govt.nz
and/or the Privacy Act 2020
Information released under the Official Information Act 1982
Who: Disabled Persons Assembly NZ
Mojo Mathers, Policy Coordinator
Paul Brown, Policy Advisor
Chris Ford, Regional Policy Advisor
Date: 7 March 2023
Re:
HDC Act & Code review
Lots of confusion regarding the overlapping roles between HDC, HRC and the Ombudsman’s
office.
People with disabilities are often traumatized by the health system, so if they actually make
a complaint it is a big step for them, which explains why there are not many disability
complaints.
Distinction between HDC and Advocacy is very confusing and there is a real need to clarify
the structure as part of the refresh. Disabled people don’t often understand the distinction
making it harder for them to make complaints. People often think they have made a
complaint to HDC when in fact it has been lodged with Advocacy.
Advocacy could still remain independent but it should come under HDC’s umbrella rather
than the current contracting out model. It is important to give advocates experienced with
disability issues job security as this would make it easier for disabled persons.
Advocates are good and it was queried whether HDC misses out on their experience and
knowledge of the disability sector under the current model. The advocate who works with
deaf people is really good.
However, it was questioned if there was an internal complaints process about advocate
performance, particularly if the advocate was seen to be taking the side of the provider.
There may be some mistrust of advocates if they do this (take the side of the provider).
When considering reform to the Act and Code, HDC should have regard to principles of
equity, accessibility and mana.
Re accessibility, it is really important providers ensure that their facilities and activities are
wheel chair accessible.
Big issue disabled complainants experience is the slowness of complaint resolution.
Disabled persons are reluctant to make complaints as they don’t want to upset the
relationship with their providers as they are very dependent on them and depending on the
service there is often very few providers to choose from.
Discussed the distinction between individual complaints and wider/group/systemic
complaints. The later is very important and there are a number of big issues which confront
and/or the Privacy Act 2020
disabled consumers including:
o
sexual health, bowel screening (disabled people falling off the radar), cervical
smears, and blind people being able to read prescription instructions from
pharmacists (i.e. via braille).
Information released under the Official Information Act 1982
People with learning disabilities have the lowest healthcare outcomes and it is important for
HDC to talk/consult with them on the review. The big issue that they face is that they don’t
get long enough at medical consultations in order to properly understand the care that is
being provided to them. Barriers to this type of consumer are even higher when considering
making a complaint to HDC. HDC should factor these barriers in when consulting with this
consumer group and do easy read consultation documents and possibly a video.
Responses to question about what HDC is doing well:
-
Videos around the Code are good/impressive but there is a need for HDC to revisit
whether more education is needed to make disability consumers aware of their rights
under the Code. Also disability providers need to be aware of their obligations under the
Code. HDC does not have much social media presence and this could assist with
education around the Code.
-
Code is generally pretty good and by in large covers what it should. It is still something
disability consumers go to when they are facing an issue with their provider.
-
Re-emphasized that the principles of dignity, autonomy and choice should be present
within the Code as they stand the test of time. Consider whether the definitions in the
Code could be updated for this.
-
Questioned whether HDC should have broader powers around the monitoring and site
visits of disability service providers.
-
Concerns that lots of prisoners have disabilities and the care provided to them should be
viewed through a disability lens.
-
Don’t like the reference to the word “consumer” as it implies disabled persons have
choice when often they do not. The term “service user” may be a better term.
-
How does the “Enabling Good Lives?” initiative fit in with the Code?
-
Where does the UN Convention on the Rights of Persons with Disabilities fit in with the
Code? There should be express reference to it.
-
There should be an express legislative requirement that HDC has to consult with
disabled persons on matters impacting them.
-
There is a perception that HDC only focuses on health and this is evidenced in the Act
where the responsible minister is the Minister of Health. This should be broadened to
include the Minister for Disability Issues.
-
It is really important that HDC’s consultation is accessible to persons with disabilities and
Disabled Persons Assembly NZ can help with promotion of the Act and Code review.
and/or the Privacy Act 2020
Information released under the Official Information Act 1982
email [email address]
www.aim.org.nz
Supporting families, preventing tragedies
26 February 2023
Ms Rose Wall
Acting Health and Disability Commissioner
Thank you for your invitation for us to contribute to your review work.
Alongside the current work of the HDC, our view is that there should be a new and newly-
funded cross-sector
Adverse Preventable Outcome Database (APOD). This should operate
under the auspices of the HDC but include (with appropriate cross -sector legislation
changes) close communication with:
Coronial inquiry processes where these relate to healthcare
Te Whatu Ora regional mortality and morbidity review systems
ACC Treatment Injury team
ACC Risk of Harm team
PMMRC and other national mortality databases
This Adverse Preventable Outcome Database can collect information from all adverse
preventable health outcomes to ensure the fol owing:
(1) Consistent family / whānau support and advice, for example, a family who has been
and/or the Privacy Act 2020
through a Coronial process where poor health care practices were identified then
being advised about making a claim to ACC under treatment injury provisions. Coronial
services have never seen it as their duty to inform families where substandard care was
identified in their loss, that ACC treatment injury claiming is a potential pathway for
them. Similarly, the PMMRC does not inform families of this option. We have also
Information released under the Official Information Act 1982
noted that the HDC does not consistently inform families about this option where
breaches of the Code are found.
(2) Practice themes leading to poor outcomes which can become evident across several
complaints, but which involve different practitioners in each case. An example from
the maternity sector would be poor or absent fetal monitoring along with flawed CTG
interpretation. We also expect that weekend under-staffing of hospital midwifery and
registrar rosters in maternity units may emerge as a theme across many poor
preventable outcomes. Further, it is our view that the human factors deficiencies in
the Section 88 regulations (such as open-ended hours of attendance in labour by the
one midwife) will lead to detectable poor outcome patterns.
(3)
Risky practitioners who are the subject of repeated adverse findings about their
standards of care could be identified so that the relevant registration bodies can
respond. To give you an example of our concerns: an obstetrician formerly employed
at Hutt Hospital whose care of one of our AIM families there was found by internal and
external investigation processes to be deficient. Tragically that deficient care led to the
death of the baby girl involved. Some time later, that same practitioner, now working
at Middlemore Hospital, has been directly involved with another of our AIM families.
This time it has led to a brain injured baby who will have lifelong impairment from that
birth. ACC’s Risk of Harm team do not collect and compare practitioner names over
time and across multiple Risk of Harm notifications. They simply deal with each
avoidable poor outcome in an isolated manner. In our view this blinkered approach is a
hugely lost opportunity to strengthen the health sector and to protect the public. An
Adverse Preventable Outcome Database would ensure that this type of information
can be captured so that repeatedly deficient standards of care can be rectified.
Following our 2009 submission to Parliament, the Government response to the Health
Committee recommendation about assisting families and whānau with poor care outcomes
noted that,
The Government supports the need for better coordinated support for families
affected by adverse birth events…
Across the many intervening years since our submission, sadly none of that better
coordinated support has taken place. We see this HDC review is a golden opportunity to try
something new.
About the same time as we made this first Parliamentary submission all those years ago, the
Maternity Quality initiative (MQI) was established across the DHBs. The most recent
PMMRC report released in December 2022 shows that there has
been no improvement in
maternal and perinatal deaths and other poor outcomes over the last 15 years. Clearly, all
the millions of dollars spent annually on the MQI and all other maternity
and/or the Privacy Act 2020improvement
measures have achieved no benefit (we have some thoughts as to why this is so which we
would be happy to discuss).
Once again,
this HDC review is a golden opportunity to try something new.
Information released under the Official Information Act 1982
Kind regards and thank you again for the opportunity to contribute
Dr Lynda Exton
AIM Kaitiaki
Who: Health Research Council of NZ
Dr Sunny Collings, Chief Executive & Consultant Psychiatrist
Date: 9 March 2023
Re:
HDC Act & Code review
Explained background on HRC’s role in funding research and how it has its own Act – the
Health Research Council Act 1990. It was noted that under that Act the HRC had a duty to
advise government on health research into issues that affect Māori, it also makes reference
to tikanga which was quite progressive for the era (1990s). Something HDC could look to as
an example.
The big issues facing NZ health research are climate change and health inequality.
Climate change in terms of disruption of services and the mental health impact it has on
people.
Health inequalities in terms of the fact that our health system is “not in the best of health”
and is failing some people. Backroom functions of the health system are not great including
things like data sharing.
Often research needs to take place in larger settings (such as old DHBs) but they are not well
set up for research and this was an opportunity lost in the current reforms to the health care
system.
It is important to recognize that research is critical to help improve care and services.
Right 9 : “The rights in this Code extend to those occasions when a consumer is participating
in, or it is proposed that a consumer participate in, teaching or research” – queried what
does “it is proposed” mean?
Wondered whether a document supporting the Code would be helpful and could emphasis
the relationship between researchers and consumers.
Right 5 – every consumer has the right to effective communication – it needs to be clear that
this is not just getting information but rather a discussion between the provider and
consumer.
Consent to research on “vulnerable consumers”
o
not all mental health consumers are the same and some actually want the right to
participate in research and make a difference.
o
people feel positive that they can make a contribution and this has therapeutic
benefits in and of itself. For example, in mental health research, some participants
feel like it is the first time they are really heard and can open up, without the fear of
consequences.
and/or the Privacy Act 2020
Noted that it is increasingly difficult to get people to participate in research – which is an
important social good. Possibly a hangover from the vaccine issue.
Advance directives – it would be good if consumers could make advance directives about
their willingness to participate in research and this could be stratified into non-invasive
Information released under the Official Information Act 1982
research and invasive research.
Would also be a good idea to relax the prohibition on EPOA’s not being able to consent to
experimental treatment.
Dr Collings wanted to make it clear that the views expressed were her own and not the formal
position of the HRC.
13 March 2023
Rose Wall
Acting Health and Disability Commissioner
By email to [email address]
Tēnā koe Ms Wall,
Feedback on Health and Disability Commissioner’s Act and Code Review
We write in response to your letter dated 3 February 2023, in which you invited the
Human Rights Commission (the Commission) to provide preliminary feedback to inform
the scoping of your review of the Health and Disability Commissioner Act 1994 (the Act),
and the Code of Health and Disability Services Consumer’s Rights (the Code).
At the outset, we wish to thank you for this opportunity on behalf of the Commission. We
welcome the opportunity to be engaged this early in the process and look forward to
contributing further as your review progresses.
As noted in your 3 February letter, we appreciate that the Act and Code have not been
updated in a long time, and the health and disability sector in Aotearoa is now operating
in a vastly different environment than when these instruments were drafted. Notably, the
government has since ratified the United Nations Convention on the Rights of Persons
with Disabilities (CRPD) and adopted the Enabling Good Lives approach to disability
support; the Pae Ora (Healthy Futures) Act 2022 has transformed the structure of our
primary healthcare system, including through the establishment of the Māori Health
Authority; and the Covid-19 pandemic compounded healthcare issues whilst also seeing
the success of whānau and hapū-based support for communities.
In this letter, we first make some general observations about access and engagement
and/or the Privacy Act 2020
with the Act and Code across different communities, before setting out four high-level
recommendations which we consider could better enhance the protection and promotion
of human rights.
General observations
Information released under the Official Information Act 1982
You have asked the
Commission
to comment on whether there are aspects of the Act or
Code that we consider are not working well, or not working well for everyone. While we
cannot speak to the direct experience of individuals, we make some observations based
on our engagements with communities and their representative organisations, as well as
Level 1, Stantec Building, 10 Brandon St, Wellington
PO Box 10424, Te Whanganui-a-Tara Wellington 6140, Aotearoa New Zealand
Waea (tol free): 0800-496-877 / TTY, Email: [email address], Website: www.hrc.co.nz
consistency with human rights law, including Te Tiriti o Waitangi obligations.
Having reviewed the data from the Health and Disability Commissioner’s (HDC) latest
Annual Report,1 we understand there is inequitable access to, and engagement with, the
complaints processes established by the Act and Code across different communities in
Aotearoa. As discussed further below, the HDC has specific obligations to Tangata
Whenua under Te Tiriti o Waitangi. However, there is well-established evidence of
pervasive inequities and barriers affecting Māori access to health and disability services,
including through language, cost, racism and a range of other systemic barriers.2
There are additional population groups in Aotearoa who are more likely than others to
experience inequity in their ability to access and engage with the Act and the Code. For
example, Pacific peoples and other ethnic communities, disabled people, and rainbow
communities.3 In its Talanoa Report the Commission found long-standing health
inequities experienced by Pacific peoples in Aotearoa.
Despite the known barriers faced by Tangata Whenua and Pacific peoples in particular,
these communities are under-represented in complaints received by the HDC. Your
2020/2021 Annual Report shows that 11 percent of the HDC’s complaints were received
from people who identified as Māori, and only 2 percent from people who identified as
Pacific, whereas 40 percent of complaints were received from people who identified as
Pākehā. The Commission recommends that your review focus on how the Act and Code
can better serve and connect with communities that face inequities in health and
disability services.
We are also aware of general feedback that the Act and Code could better respond to
resolving relational issues between service providers and consumers. We have heard that
the Act and Code are more equipped to respond to complaints about the quality of health
and disability services. However, as people are increasingly being recognised as partners
together with their providers in matters relating to health and disability, there is an
expectation that whakawhanaungatanga and manaakitanga be respected and upheld.
There is an inherent power imbalance between health and disability service providers and
consumers, who often rely on providers for their essential daily needs. The Commission
recommends that an increased focus on how providers can better engage with and treat
people at a systemic level, and how people can exercise their right to complain without
adverse consequences, should be considered as part of the Act and Code review.
and/or the Privacy Act 2020
1 HDC Annual Report 2021, accessed at https://www.hdc.org.nz/media/6046/hdc-annual-report-2021.pdf.
2 Palmer et al., (2019),
Reported Māori Consumer Experiences of Health Systems and Programs in
Information released under the Official Information Act 1982
Qualitative Research: A Systematic Review with Meta-Synthesis¸ International Journal for Equity in Health,
2. Waitangi Tribunal, (2019),
Hauora: Report on Stage One of the Health Services and Outcomes Kaupapa
Inquiry, (Wai2575), 34, 55. Accessible at: https://waitangitribunal.govt.nz/news/report-on-stage-one-of-
health-services-and-outcomes-released/.
3 For discussion of difficulties experienced by SOGIESC communities in the health system refer to: To Be
Who I Am.
Recommendations for change
You have also asked the Commission to provide preliminary advice on potential changes
to the Act and Code which we consider would better enhance the protection and
promotion of health and disability services consumers’ rights. We set out four
recommended areas for change below.
1. Embedding Te Tiriti and human rights obligations
In their current form, the purpose provisions of the Act and the rights contained in
the Code do not reflect and embed the need for the HDC to ensure health and
disability service providers comply with human rights obligations, including those
contained in Te Tiriti o Waitangi.
Te Tiriti and UNDRIP obligations
The Act and the Code do not explicitly refer to Te Tiriti o Waitangi, or tikanga and
mātauranga Māori. The Act and Code should contain provisions which require the
HDC to ensure health and disability service providers act in a manner that is
consistent with Te Tiriti o Waitangi. In
Hauora: Report on Stage One of the Health
Services and Outcomes Kaupapa Inquiry, the Waitangi Tribunal found that “the
Crown is obliged to ensure that all primary health care services are provided in a
cultural y appropriate way that recognises and supports the expression of hauora
Māori models of care.”4 However, the Commission is aware of at least one
complainant who was advised that the HDC could not address the aspects of her
complaint that related to Te Tiriti issues.5 There is an urgent need to consider what
health and disability services should look like in te ao Māori and how tikanga is and
should be understood and applied across these contexts.
In addition to Te Tiriti, the United Nations Declaration on the Rights of Indigenous
Peoples (UNDRIP) affirms and reinforces the rights of indigenous peoples to:
• enjoy the highest attainable standard of physical and mental health;6
• determine and control their own health policies and practices;7
• maintain and develop their own traditional medicines, health care practices,
and/or the Privacy Act 2020
4 Waitangi Tribunal,
Hauora: Report on Stage One of the Health Services and Outcomes Kaupapa Inquiry,
WAI 2575 (2019), p 163.
5 See https://www.stuff.co.nz/national/health/130534797/specialist-censured-for-obtaining-consent-
while-patient-was-on-sedatives. We understand the HDC initial y referred the complainant to the
Commission to address the Te Tiriti aspects of her complaint. After the Commission notified the complaint,
Information released under the Official Information Act 1982
the complainant reverted to the HDC process because the discrimination and Te Tiriti issues were
interconnected to the HDC issues and the solutions she sought, but this was only after she
chal enged/escalated matters within the HDC.
6 United Nations Declaration on the Rights of Indigenous Peoples (UNDRIP) (adopted by UNGA 13
September 2007, signed by New Zealand 20 April 2010), at 24.
7 UNDRIP, art 23.
and medicines relevant to their cultural practices;8
• participate in decision-making processes that affect their health and
wellbeing;9 and
• have access to and use and control of their traditional lands, territories, and
resources, which are critical for their health and wel -being.10
Coupled with Te Tiriti obligations, these UNDRIP articles highlight the importance of
upholding Tangata Whenua rights to self-determination through the provision and
regulation of health and disability services in Aotearoa. The Commission recommends
that exploring how these rights and obligations can be actively embedded and
advanced should form a key consideration of the HDC’s review.
Wider human rights obligations
The Commission recommends that the Act and the Code also be updated to require
the HDC to ensure that health and disability services providers act in a manner that
protects, promotes, and upholds human rights.
As a party to international human rights instruments, Aotearoa is legally bound to
respect, protect and fulfil the right of everyone to the highest attainable standard of
both physical and mental health.11 This right is established by article 12(1) of the
International Covenant on Economic, Social and Cultural Rights (ICESCR),12 and has
been subsequently recognised in article 24 of the Convention on the Rights of the
Child (CRC)13 and article 25 of the CRPD. The right to the highest attainable standard
of health entitles everyone in Aotearoa to both healthcare and health protection,
administered through an effect health system.14 The Commission recommends that
the HDC builds on these legal y binding foundations to elevate the right to healthcare
and the right to public health in their future work.
The right to the highest attainable standard of health is underpinned by fundamental
8 UNDRIP, art 20.
9 UNDRIP, art 18.
10 UNDRIP, art 14.
11 See Universal Declaration on Human Rights (UDHR) (adopted 10 December 1948), art 25(1); International
Convention on the Elimination of al Forms of Racial Discrimination (ICERD) (adopted 21 December 1965,
entered into force 4 January 1969), art 5(e)(iv); International Covenant on Economic, Social and Cultural
Rights (ICESCR) (adopted 16 December 1966, entered into force 3 January 1976), art 12(
and/or the Privacy Act 2020 1); International
Convention on the Elimination of All Forms of Discrimination against Women (CEDAW) (adopted 18
December 1979, entered into force 3 September 1981), arts 11(1)(f), 12 and 14 (2)(b); International
Convention on the Rights of the Child (UNCROC), (adopted 20 November 1989, entered into force 2
September 1990), art 24 (1989); and United Nations Convention on the Rights of Persons with Disabilities
(CRPD), (adopted 13 December 2006, entered into force 3 May 2008), art 25.
Information released under the Official Information Act 1982
12 See Committee on Economic, Social and Cultural Rights ‘ General Comment no.14 on the highest
attainable standard of health’ (2000).
13 See Committee on the Rights of the Child ‘General Comment No.15 on the right of the child to the
highest attainable standard of health’ (2013).
14 See Human Rights Commission Guide to the rights to healthcare and health protection in Aotearoa New
Zealand (8 February 2023).
rights to equality and non-discrimination recognised in both domestic and
international law.15 Equitable health and disability services require effective,
responsive and integrated systems of good quality that are accessible to all.16 For
disabled people, failure to provide reasonable accommodation through appropriate
individualised modifications, adjustments and supports is also a form of
discrimination and interferes with the exercise of their right to health on an equal
basis with others.17
There is international evidence that applying human rights concepts and frameworks
help to strengthen health systems, achieve equity, reduce suffering, and save lives.18
The Commission considers that the Act would be strengthened by an explicit
requirement for the HDC to protect, promote and uphold human rights obligations in
Aotearoa, and that human rights principles should be embedded throughout the
rights contained in the Code.
2. Language and understandings
Since the Act and Code were drafted, there has been a significant shift in the way we
understand a number of concepts which are fundamental to the health and disability
sector. The Commission recommends that through your review, the language in the
Act and Code be updated to reflect these changes. In particular:
•
Consumer rights – The Act and the Code were drafted in an era which
conceived of “consumer rights”. However, the work of both the HDC and the
Commission is primarily concerned with human rights, grounded in binding
domestic and international human rights law. The Commission recommends
that as part of its review the HDC focus on replacing the language of
“consumer rights” with “human rights”, which recognises people as rights
holders rather than consumers.
•
Disability – Definitions under the Act and Code currently reflect a medical
model of disability. Ratification of the CRPD in 2008 signalled a shift away
15 Recognised domestical y in the New Zealand Bil of Rights Act 1990 (NZBORA), s19 and the Human Rights
Act 1993 (HRA), s21 as wel as in the ICERD; CEDAW; International Covenant on Civil and Political Rights
(ICCPR), (adopted 16 December 1966, entered into force 23 March 1976), article 26; ICESCR, article 2(2);
CRC, art 2; and CRPD, art 5.
and/or the Privacy Act 2020
16 Hunt and G Backman “Health systems and the right to the highest attainable standard of health” (2008)
10(1)
Health Hum Rights 81 at 81–92. See also C Wil iams et al “The right to health supports global public
health” in R Detels et al (eds)
Oxford Textbook of Global Public Health (7th edn, Oxford University Press,
Oxford, 2021); see also P Hunt and S Leader “Developing and Applying the Right to the Highest Attainable
Standard of Health: The Role of the UN Special Rapporteur (2002-2008)” in J Harrington and M Stuttaford
Information released under the Official Information Act 1982
(Eds),
Global Health and Human Rights Legal and Philosophical Perspective (Routledge, New York, 2010).
17 CRPD, art 5(3). See also ‘Removing barriers’ – an updated guide about reasonable accommodation of
disabled people in Aotearoa. Jointly published by the Chief Ombudsman, Human Rights Commission and
Disabled People’s Organisations Coalition.
18 See further resources list for more information and further reading at www.tikatangata.org.nz/our-
work/guide-to-the-rights-to-healthcare-and-health-protection.
from the medical model, toward a social model of disability.19 The social
model of disability moves the focus away from a pathological understanding
of disability (the medical model) and onto the barriers within society that
prevent disabled people from being able to participate in society and develop
their full potential, consistent with the right to freedom from discrimination
and the right to health.20 We consider the rights contained in the Code could
also more clearly recognise and reflect the right of disabled people under
article 19 of the CRPD to live independently and be included in the
community, as engaging with service providers is often central to disabled
peoples’ ability to participate in many aspects of home and community life.
•
Healthcare and disability service providers – The definitions relating to service
providers and practitioners under the Act and Code do not account for the
less formal way many health and disability supports and services are provided
in Aotearoa. Consistent with article 19 of the CRPD, we have moved toward a
more family and whānau-centred provision of care, and the Enabling Good
Lives model reflects an expectation that people should be treated as equal
partners in matters to do with health and disability. A balance also needs to
be struck between the need for regulation to uphold the quality of services
being provided, while avoiding over-prescription in how much we expect from
family and whānau-based carers. As part of its review, the Commission
recommends that the HDC engage with community members about how best
to bring them in line with the regulatory requirements under the Act and
Code.
•
Informed consent – The requirement for all consumers to provide free and
informed consent for the provision of health and disability services is
consistent with human rights obligations. The Commission notes that
right 7(3) of the Code upholds the right of consumers with diminished
capacity to give informed consent. However, it does not expressly recognise
or account for supported decision-making by consumers. Article 12 of the
CRPD requires that “those who lack capacity should not have decisions made
for them (substituted decision-making) but should rather be supported and
helped to make decisions for themselves.”21 We would therefore recommend
that attention is given to incorporating supported-decision making principles
within this part of the Code to reflect the requirements of the CRPD. We also
consider that right 7(4) of the Code, which provides for “best interests”
and/or the Privacy Act 2020
decision-making on the behalf of consumers who lack competence, provides
for a form of substituted decision-making and therefore requires
19 CRPD, art 2.
20 See
Report of the Special Rapporteur on the rights of persons with disabilities UN Doc A/HRC/52/32 (28
Information released under the Official Information Act 1982
December 2022) at [18]-[20] which notes that the medical model of disability “focus[ed] on the
impairment, not the person” whereas “[s]ervices of the future should primarily be about enabling one to
self-actualize in the world”.
21
TUV v Chief of New Zealand Defence Force [2022] NZSC 69 at [95] citing CRPD, art 12, and See UN
Committee on the Rights of Persons with Disabilities
General comment No 1 (2014) Article 12: Equal
recognition before the law UN Doc CRPD/C/GC/1 (19 May 2014).
reconsideration in order to align with the principles of the CRPD. We note that
right 7(4) is engaged in a range of circumstances, including emergency care
when a patient may be unconscious. We also note that right 7(4) does make
some provision for the ascertaining the wil and preferences of the consumer,
either directly or through others with an interest in their welfare. However,
we nevertheless recommend that right 7(4) is reviewed with a view to
ensuring that it fully reflects the primary focus on the wil and preferences of
an individual required by the CRPD.22 In its Concluding Observations, the
CRPD Committee has recommended that New Zealand laws are revised to
ensure substituted decision-making is replaced with supported decision-
making.23 The Commission considers that any legal framework which provides
for informed consent should be predicated on a person’s right to supported
decision-making, where appropriate.
3. Complaints and investigations
The Commission recommends that several changes to the scope and procedures for
bringing complaints and investigations under the Act and Code are needed to better
protect human rights.
In relation to scope, the Commission considers that the rights under the Code should
be extended to include a right to access health and disability services in Aotearoa.
This would then al ow people to complain to the HDC when they are unable or have
barriers to access these services. Accessibility of healthcare is a fundamental principle
of the right to health. As reflected in the HDC’s latest Annual Report,24 and discussed
in our general observations above, there is clear evidence that people from different
communities in Aotearoa experience inequity in their ability to access health and
disability services. Expanding the scope of the HDC’s jurisdiction to cover not only
complaints about the quality of services, but complaints about access, would
promote a greater focus on the unmet needs of these communities.
The Commission also understands that greater cultural and disability responsiveness
is needed in the supports provided to people throughout the HDC’s complaints and
investigation processes. This aligns with the HDC’s obligations to Tangata Whenua
under Te Tiriti o Waitangi and UNDRIP, to ensure pathways for resolution of
complaints and investigations recognise and respect tikanga and te ao Māori.
Obligations regarding accessibility and reasonable accommodation under the CRPD25
and/or the Privacy Act 2020
would be better protected through an explicit right to accessible communication
under the Code, with more detail about the alternative formats to ensure disabled
people can exercise their right to complaint under the Code on an equal basis with
Information released under the Official Information Act 1982
22
TUV v Chief of New Zealand Defence Force [2022] NZSC 69, at [99].
23 Committee on the Rights of Persons with Disabilities,
Consideration of Reports Submitted by States
Parties under Article 35 of the Convention: Concluding Observations of the Committee on the Rights of
Persons with Disabilities (New Zealand), CRPD/C/NZL/CO/2-3, 27th session (26 September 2022) at [22].
24 HDC Annual Report 2021, at pp.14, 15, 24, 26.
25 CRPD, arts 2 and 9.
others.26 Equal y, avenues which better accommodate SOGIESC communities, and are
cultural y responsive to the needs of Pacific and other ethnic communities, would
improve the ability for these population groups to access and engage with the HDC’s
complaints procedures.
Through their engagements with the HDC, the Commission’s Dispute Resolution team
understands that changes could also be made to better support avenues for
alternative dispute resolution services under the Act (including early resolution,
facilitation, mediation and conciliation). While the Act provides for “mediation
conferences” in s 61, we recommend that there be statutory recognition of
alternative processes. Other considerations related to complaints resolution include:
• We have heard that complaints from disabled people, where there is an
expectation of an ongoing relationship with the provider/practitioner, are
more often referred to an advocate for early resolution27 compared with
complaints by non-disabled people. While we understand the preference to
maintain relationships, a balance needs to be struck with avoiding the
preservation of harmful relationships. The preferences of the complainant
should remain the priority at the initial assessment phase.
• Consideration should also be given to whether referring complaints back to
providers for resolution is appropriate in some instances as opposed to
actively investigating or using alternative dispute resolution processes. Some
shared contacts have expressed frustrations when a matter has been triaged
to the Nationwide Health and Disability Advocacy Service, where the process
may involve seeking a written response from the medical practitioner against
whom the complaint relates. If the practitioner denies the al egations, in
some cases that has been the end of the process. This has left complainants
feeling dissatisfied, with no ability to take their complaint further.
• The intersection between the roles of the HDC and the Commission in
addressing discrimination complaints requires consideration. As you are
aware, discrimination complaints may fall under both right 2 of the Code as
well as the Human Rights Act 1993. This overlap could be clarified through
establishing a choice of procedures (with the Code defining its scope in
relation to complaints of discrimination), or through greater co-ordination
between our agencies through a memorandum of understanding including
and/or the Privacy Act 2020
the option for co-mediation of discrimination complaints.
• The Commission understands the difficult balance to be struck between
giving fulsome consideration to the issues raised in a complaint, while
Information released under the Official Information Act 1982
26 See CRPD, art 2 which defines “Communication” as including languages, display of text, Brail e, tactile
communication, large print, accessible multimedia as wel as written, audio, plain-language, human-reader
and augmentative and alternative modes, means and formats of communication, including accessible
information and communication technology.
27 In accordance with s 37 of the HDC Act.
ensuring matters progress toward resolution in a timely manner. Introducing
statutory timeframes, similar to those contained in the Official Information
Act 1982, for the HDC to complete initial assessments of complaints and for
parties to provide their responses, could assist with efficiency.
We recommend that also you consider how the outcomes of complaints and
investigations could be strengthened to better address systemic issues in the health
and disability sector. The complaints and investigation processes currently contained
in the Act28 focus solely on outcomes as between affected individuals and
providers/practitioners found to have breached the Code through agreed resolutions,
specific recommendations, or referral to disciplinary or Human Rights Review
Tribunal proceedings. As part of your review, we recommend you consider how the
HDC could be empowered to address cultural or structural issues arising more
broadly across the sector, such as through the ability to undertake and publish
thematic investigations and recommendations.
4. Increased transparency and accountability
Finally, we recommend that as part of the HDC’s review you consider how to support
increased transparency and accountability in respect of the health and disability
system in Aotearoa. We consider that strengthened annual reporting requirements
covering the fol owing data would assist the HDC to better understand and respond
to the peoples’ needs:
• Disaggregated data on barriers to accessing health and disability services;
• Disaggregated data about barriers to accessing the HDC’s complaints and
investigations procedures.
As discussed in the Commission’s recent submission on the Accident Compensation
(Access Reporting and Other Matters) Amendment Bil ,29 it is critical that active steps
be taken to address disparities and barriers to accessing health and disability services
in Aotearoa, as well as complaints and investigation mechanisms designed to protect
human rights. The HDC should also consider how to increase transparency around
the solutions it considers and implements to addressed identified disparities and
barriers to access.
Next steps
and/or the Privacy Act 2020
We hope the Commission’s general observations and preliminary recommendations set
out in this letter are helpful to informing the scope and process for your review of the Act
and Code. We look forward to continuing to engage with you and provide feedback as
your review progresses.
Information released under the Official Information Act 1982
28 In particular under ss40 – 50 of the HDC Act.
29 Accessible at https://www.parliament.nz/resource/en-
NZ/53SCEW_EVI_130009_EW9960/f383578df54e69c6b6ec175bc32a36112816e1db.
We strongly recommend that the HDC also consult directly with the Office of Human
Rights Proceedings, which is independent from the Human Rights Commission.
As you enter the next phase of consultation with consumers and other stakeholders, we
understand you will have a range of established contacts and networks to reach out to.
We would also be happy to share our contacts from affected communities and
representative organisations. The Commission has relationships with individuals and
groups representing Tangata Whenua, hapū and iwi, disabled people and tāngata
whaikaha Māori, Pacific peoples and ethnic communities, and rainbow communities. We
would welcome the opportunity to facilitate further connections between the HDC and
these communities.
Nāku noa, nā
Philippa Moran
Senior Human Rights Advisor to the Chief Commissioner | Kaitohu Tika Tangata ki te
Amokapua
New Zealand Human Rights Commission | Te Kāhui Tika Tangata
Cc:
Catherine McCollough, Principal Advisor, Health and Disability Commissioner
[email address]
and/or the Privacy Act 2020
Information released under the Official Information Act 1982
Ms Rose Wall
Acting Health and Disability Commissioner
Tower Centre
Level 10/45 Queen St
Auckland 1010
New Zealand
Re:
proposed review of the Health and Disability Commissioner Act 1994 and the Code
of Consumers’ Rights.
Tēnā koe Commissioner Wall,
Thank you for the opportunity to provide input regarding the upcoming review of the Health
and Disability Commissioner Act 1994 and the Code of Consumers’ Rights.
While I think the Code continues to be an effective and functional regulation, there are two
substantive issues that I think the Commissioner may wish to consider in a review of the Code
(or at least which may be raised by interested parties), and one procedural issue that I would
like to raise.
1. UNCRPD: supported decision making
The first substantive issue is whether the concept of ‘supported decision making’, as
referenced in Article 12 of the United Nations Convention on the Rights of Persons with
Disabilities (UNCRPD)1 should be explicitly referenced in Right 7 of the Code.
In suggesting this, I want to stress that while I would argue supported decision making is
consistent with the spirit of the Code, I strongly disagree with the UN Committee’s
subsequent General Comment on Article 122 and the assertion that all substitute decision
making regimes should be abolished is not tenable or desirable in a rights-based society.
In previous work, myself and my colleague Alison Douglass analysed Right 7 of the Code in
the context of the contemporary rights-based shift to supported decision making.3 I have
included the following extract in case it is of interest:
and/or the Privacy Act 2020
Right 7(1) emphasises the importance of individuals giving informed consent, but it also
contemplates exceptions to that principle ‘if any statute or the common law, or other
provision of the Code, provides otherwise’. Right 7(2) reiterates the common law
presumption of competence and that not all healthcare decisions require the same
Information released under the Official Information Act 1982
1 UN General Assembly
Convention on the Rights of Persons with Disabilities and its Optional Protocol GA Res
61/106 (13 December 2006).
2 Committee on the Rights of Persons with Disabilities,
General Comment No 1, 2014.
3 J Snelling and Alison Douglas “Legal Capacity and Supported Decision Making” in I Reuvecamp and J Dawson
(eds)
Mental Capacity Law in New Zealand (Thomson Reuters, 2019).
1
degree of capacity. Right 7(3) adds that a consumer with diminished competence
“retains the right to make informed choices and to give informed consent, to the extent
appropriate to his or her level of competence” – a rule that might even be read as
requiring that appropriate support for decision-making be provided whenever such
support is necessary and reasonably available.
Nevertheless, the Code still permits services to be provided without consent.
Regarding a person considered to lack capacity to consent, Right 7(4) provides that
health services may still be provided when this “is in the best interests of the
consumer”,
and “reasonable steps have been taken to ascertain the views of the
consumer”,
and either:
(i) the provider believes, on reasonable grounds, that the provision of the services is
consistent with the informed choice the consumer would make if he or she were
competent
or,
(ii) if the consumer’s views have not been ascertained, the provider takes into account
the views of other suitable persons who are interested in the welfare of the
consumer and available to advise the provider.
These provisions implicitly suggest that best interests’ determinations should be
consistent with reasonable beliefs about the patient’s preferences. Hence the Code
clearly endorses the so-called “subjective” or patient-centred approach to determining
best interests, which is consistent with the spirit of the CRPD and CRPD-GC which
requires respect of a persons ‘rights, will, and preferences’. The Code does not provie
guidance as to what constitutes reasonable steps to obtain a consumer’s views, but a
genuine attempt to ascertain such views seems required whenever possible.
To make the approach even more rights-centred, the Code might stipulate that no-one
should be considered to lack competence to consent unless all practical measures have
been taken to support them to make their own decision, and those measures have not
succeeded.4 In addition, the Code might provide that third-party decisions under Right
7(4) should be consistent with an impaired individual’s will and preferences, as far as
possible, unless that would result in significant harm.
However, there will still be difficult cases where decisions must be made on behalf of
an impaired person, when their will and preferences are not discernible, and no suitable
person is available to provide advice.
and/or the Privacy Act 2020
2. Research involving adults who lack capacity to consent – Right 7(4) of the Code;
I understand this particular issue is not a new one for the Commissioner, but it remains an
important issue yet to be resolved. I was part of the HDC’s Expert Advisory Group when the
Information released under the Official Information Act 1982
former Commissioner undertook a review of the issue—and would very much like to see
reform in this area.
4 Cf Mental Capacity Act 2005 (UK), s 1(3).
2
3. Access to justice
I share some of the concerns previously raised by Professor Joanna Manning regarding the
degree to which the Code is providing health and disability consumers’ with access to justice.5
I think that a review of the Code could helpfully include an inquiry into the degree of
satisfaction with the HDC process for both providers and patients as a means of identifying
areas for improvement. (I wonder if there could be an independent review mechanism
introduced for consumers if there is a decision that No Further Action is necessary or
appropriate; or that there has not been a breach of the Code after an investigation (as
currently occurs with ACC reviews) with the option of appealing to the HRRT.
Best wishes,
Dr Jeanne Snelling
Senior Lecturer | Pūkenga Matua
Faculty of Law | Te Kaupeka Tātai Ture
University of Otago | Te Whare Wānanga o Otāgo
and/or the Privacy Act 2020
Information released under the Official Information Act 1982
5 Jo Manning “’Fair, simple, Speedy and efficient”? Barriers to Access to Justice in the HDC’s
Complaints Process in New Zealand” (2018) NZ Law Review 611.
3
+64 4 384 7635
PO Box 10509
0800 286 801
Wellington 6140
[email address]
New Zealand
mcnz.org.nz
22 March 2023
Health and Disability Commissioner
Act and Code Review
PO Box 11934
Wellington 6142
By email: [email address]
Tēnā koe Morag
Re: Seeking early input into HDC’s Act and Code Review
Thank you for your letter of 3 February 2023 seeking the Te Kaunihera Rata o Aotearoa the Medical
Council of New Zealand’s (Council’s) input into the Health and Disability Commissioner Act 1994
(the Act) and the Code of Health and Disability Services Consumers’ Rights (the Code). We
appreciate the opportunity to provide input at this early stage.
I apologise for the delay in replying to you.
To assist you with your scoping of your review we have identified a number of areas of the Act and
the Code that you may wish to consider and we have also made some preliminary notes on
rationale:
Area of the Act
Rationale
s 9 and 10
Consider creating consistency with the Pae Ora Act
Te Tiriti o Waitangi and the principles of Te
2021 and the principles of Te Tiriti o Waitangi
Tiriti o Waitangi
derived from WAI 2575.
Consider s 9 Deputy Commissioner Kaitiaki Mana
Māori or similar role to lead the organisations
partnerships with the Iwi and the Māori
community, and advance kaupapa Māori initiatives.
We note that a senior Māori staff member has
been appointed.
Consider changing the language of clauses to
reflect New Zealand values today and cultural
and/or the Privacy Act 2020
safety (which now includes religious and ethnicity):
For example:
10 (1) (g) the person’s recognition of the social and
cultural, and religious values of different cultural
Information released under the Official Information Act 1982
and ethnic groups or communities in New Zealand,
which includes but is not limited to ethnicity,
national origin, religion, diverse sexual orientations,
gender identities and expressions, variations of sex
characteristics, or disabilities
Te tiaki i te iwi whānui me
Protecting the public,
te whakatairanga pai i te mahi
promoting good
1
e pā ana ki te taha rongoā
medical practice
s 14 (2)(a) s23 and s 29
Tailoring the Act to reference Māori communities
consider specifying Māori communities
more specifically (as it does the disability
and Māori health providers.
community)
Section 20 re: content of Code
s20 (1) (c) (iii), consider specifying the provision of
services that take into account the needs, values,
and beliefs of different social groups or
communities in New Zealand, which includes but is
not limited to ethnicity, national origin, religion,
diverse sexual orientations, gender identities and
expressions, variations of sex characteristics, or
disabilities.
s 23 Consultation on preparation and
Consider of consultation with disabled people’s
review of Code
organisations under 23 b refer:
Disabled People's Organisations - Office for
Disability Issues (odi.govt.nz)
Alternatively there may be the opportunity for an
the independent disability voice informed by lived
experience.
s 25 Advocacy services
Consider including a function to ensure that
advocacy services are made available to diverse
communities.
Section 31 of the Health and Disability
The Code of Rights is available in different
Commissioner Act 1994 states that any
languages on HDC’s website. This is an excellent
person may complain orally or in writing to initiative.
an advocate or to the Commissioner
This may not require amendment but more
alleging that any action of a health care
promotion to non-English language communities to
provider or a disability services provider is
promote access to HDC resources.
or appears to be in breach of the Code.
This is also reflected in Right 10 of the HDC
Code about every consumer having the
right to complain about a health or
disability provider.
s 33(1) Preliminary assessment
Consider having a time limit inserted and replace –
“
as soon as reasonably practicable”?
and/or the Privacy Act 2020
Consider how a triage system for certain classes of
cases (sexual boundary cases) that may assist to
reduce risk to public safety due to delay.
Information released under the Official Information Act 1982
S 34 (1) Referral of complaint to agencies
Consider having a time period around referral of
involved in health or disability sector
complaint back to appropriate authority if it appears
from the complaint that the competence of a health
practitioner or his/her fitness to practise or
appropriateness of conduct may be in doubt - To
replace ‘At
any time’.
Te tiaki i te iwi whānui me
Protecting the public,
te whakatairanga pai i te mahi
promoting good
2
e pā ana ki te taha rongoā
medical practice
Timely notification of concerns about the safety of a
doctor’s practice or conduct is imperative so the
Council can take interim action (if necessary) to
protect the public.
34(2) Commissioner may consult with
The Council would like clarity around the criteria for
agency before referring a complaint.
referral or acting and referring complaint to Council
under s34(1) – The Medical Council of New Zealand
34(5) Reference of a complaint does not
is unable under HPCAA to investigate conduct while
preclude Commissioner from taking action
the Commissioner is doing so. There may be some
on the complaint
instances where Council (through its Professional
Conduct Committees) are best placed to investigate
conduct rather than the Commissioner. See also
comment above around establishing a triage system
for certain classes of cases (i.e., sexual boundary
cases) and whether these are best placed with
Council to reduce risk to public safety.
Code of Rights
The right to Cultural Safety we included within Right
1, for example
Into Right 1, (3)
Every consumer has the right to be provided with
services that are experienced by that consumer as
culturally safe and aligned with that consumer’s
needs, values, and beliefs; this applies to all social
groups or communities in New Zealand, including
but is not limited to those based on ethnicity,
national origin, religion, diverse sexual orientations,
gender identities and expressions, variations of sex
characteristics, or disabilities.
We would be happy to input into the review at later stages, and expand on any of the points raised
in this letter. We wish you all the best with your progress and thank you again for the opportunity to
provide early input.
Ngā manaakitanga
and/or the Privacy Act 2020
Information released under the Official Information Act 1982
Kiri Rikihana
Manukura Tuarua/ Deputy CEO
Te tiaki i te iwi whānui me
Protecting the public,
te whakatairanga pai i te mahi
promoting good
3
e pā ana ki te taha rongoā
medical practice
and/or the Privacy Act 2020
Information released under the Official Information Act 1982
and/or the Privacy Act 2020
Information released under the Official Information Act 1982
and/or the Privacy Act 2020
Information released under the Official Information Act 1982
and/or the Privacy Act 2020
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Ms Jordana Bealing (Co-Chair)
On behalf of NAMHSCA
(National Association of
Mental Health Services
Consumer Advisors)
13 March 2023
Rose Wall
Acting Health & Disability Commissioner
By email: [email address]
Kia ora Rose
RE: INPUT INTO HDC’s ACT AND CODE REVIEW
Thank you for the opportunity to provide feedback into the HDC Act and the HDC Code. We have put
this to our members and have collated this to give to you in the contents of this letter. Overall, our
members did not have specific feedback about the Act and Code per se, however we wanted to take
this opportunity to raise some issues with the HDC. Collectively, we have concerns regarding some
areas that we hope the HDC will look into and consider and we wanted to make the most of this
opportunity. Some issues are wider strategic operational issues, while others are more frontline.
-
A lack of knowledge in the general public regarding basic health and disability rights, and
also human rights more generally.
-
More robust structures in place (or greater publicising of existing processes) regarding
breaches of these rights – particularly in terms of where people can go.
-
Compulsory Rights training for government services – sitting alongside many organisations
Privacy training.
-
Greater visibility and wider public facing initiatives of the HDC regarding disability issues
-
MSD’s partner means testing for disability benefits – currently our people are being
incentivised to die alone, as entering into a relationship results in guilt of their partner
and/or the Privacy Act 2020
having to take on greater financial responsibilities.
-
The cost of disability parking permits which results in those with disabilities having to pay for
free parking and pay more for paid parking.
Once again, thank you for this opportunity to provide feedback and for the excellent work that the
Information released under the Official Information Act 1982
HDC does. If you need any further feedback or input into any of these issues listed above (or any
others) please do not hesitate to get in touch.
Ka tū tonu koe i roto i te aroha
Jordana Bealing
(Co-Chair NAMHSCA)
Compiled by: Sherida Davy, Dianne Black, and Dave Snell.
and/or the Privacy Act 2020
Information released under the Official Information Act 1982
13 March 2023
Morag McDowel
Health and Disability Commissioner
Act and Code Review
PO Box 11934
Wel ington 6142
Email: [email address]
Tēnā koe Morag
Thank you for asking the National Advocacy Trust's early input into HDC's Act and Code Review.
We believe the Act and the Code provides an important Pou for the New Zealand health and disability
system. With the new legislative changes coming into practice, in particular the New Zealand Health
Charter proposed in Sections 50-52 of the Pae Ora (Healthy Futures) legislation, the Code and Act still
play a vital role in ensuring systemic, organisational or individual health professionals are held to
account in delivering fair and equitable services to all health and disability consumers. The promote
and protect of the rights of health and disability consumers.
There are definite opportunities to improve the Act including:
• Mandatory education and ongoing professional development for all health and disability
professionals on the Act and the Code
• testing the efficacy of the Code with Māori, Pacific, ethnic, disability, rural and other key
consumers of health and disability services across Aotearoa
We believe the free and independent role of the National Health and Disability Advocacy Service is an
asset for the health and disability sector. The role of Advocacy needs to be strengthened within the
Act to continue to empower consumers at the front end to access the appropriate support by having
someone work with them, to ensure their rights are protected and promoted. As Drage (2013) states
many of the points that may wel be put on the table for discussion have been considered in previous
reviews of the Act. (Drage, J., (2013). New Zealand's National Health and Disability Advocacy Service:
A successful model of advocacy,
Health and Human Rights Journal)
We welcome to opportunity to feed into this process in more depth and look forward to hearing from
and/or the Privacy Act 2020
you.
Ngā mihi nui
Information released under the Official Information Act 1982
Sarah Hutchings
Chair
National Advocacy Trust
and/or the Privacy Act 2020
Information released under the Official Information Act 1982
13 March 2023
Rose Wall
Acting Health and Disability Commissioner
Act and Code Review
PO Box 11934
Wellington 6142
By email: [email address]
Tēnā koe Rose
Feedback into the scoping of the next review of the Act and Code
Thank you for the opportunity to provide input into the review of the Health and Disability
Commissioner Act and the Code of Health and Disability Services Consumers’ Rights.
We have detailed specific areas for consideration with regards to input and views of tangata
whaiora:
Te Tiriti o Waitangi
We ask that the scoping review explore how the principles of Te Tiriti will be given effect in
the Act and the Code of Rights as well as the processes and approach the commission
adopts during the review. In particular with regard to the public consultation including:
- Partnership with Māori to design the approach and engagement with Māori with
lived and living experience of accessing mental health services
- Ensuring feedback from Māori is analysed by Māori with recommendations that are
informed by our communities and disseminated to our communities who have been
involved in the process
- Equitable access and a range of options that suit the needs of the communtiy to
provide feedback
and/or the Privacy Act 2020
Further describe each of the rights
An exploration of what these mean to tangata whaiora so that there is a common
understanding of the rights, the Act and the processes and support available if people have
Information released under the Official Information Act 1982
concerns about their rights being upheld. People often describe feeling ‘let down’ and
‘unheard’ when complaining and it is often due to an incongruence with what is ‘allowed
for’ to establish there has been a ‘breach’.
There is little education for tangata whaiora on their rights and typically many are fearful of
‘rocking’ the boat so wil not raise any concerns. For Māori and Pasifika in particular this
also highlights the potential for discriminatory practices not being reported for fear of not
being heard or taken seriously.
We would like to see increased commitment and accountability to ensuring tangata whaiora
can access education and support on the code of right and the role of HDC. Raising
awareness now about the existing rights and The Commissioners Act may also have the
added benefit of people who may be most impacted by the changes being able to better
inform during the consultation process.
Inclusion of restorative processes
Feedback from tangata whaiora and people who have advocated on their behalf have often
stated challenges with raising complaints whilst receiving service and the impact this has on
their care and support received. In some cases it was a fear of repercussions later down the
track if they were to seek support in the future.
Exploring the role of restorative practices that uphold the mana of tangata whaiora,
particularly when there is a disagreement in the final decisions would be something we
would like to see included in the scoping review.
Thank you again for the opportunity to provide some input in to this process.
Ngā mihi nui
Kerri Butler
Director
and/or the Privacy Act 2020
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Kia ora Rose,
I refer to your letter of 3 February to our Chief Executive, Margie Apa, regarding the upcoming
review of the Health and Disability Commissioner Act, and the Code of Health and Disability Services
Consumers’ Rights (the Code) to consider whether any changes are necessary or desirable.
Thank you for the opportunity to comment.
Te Aka Whai Ora
We were unsure whether or not Te Aka Whai Ora had been invited to contribute, but would suggest
that they would make an important contribution to this korero.
Legal Comment - Pae Ora
As you are aware, the Pae Ora (Healthy Futures) Act 2022 seeks to protect, promote and improve
the health of all New Zealanders, and achieve equity in health outcomes among our population
groups, including by striving to eliminate health disparities, in particular for Māori. The Act requires
all health entities to be guided by the health sector principles, which give effect to the principles of
the Treaty of Waitangi (including tino rangatiratanga (self-determination), ōritetanga (equity),
whakamaru (active protection), kōwhiringa (options) and pātuitanga (partnership), and are aimed at
improving the health sector for Māori and improving hauora Māori outcomes. At a high level, we
would suggest that it would be useful for the HDC to run a tikanga lens over the Code (and “content
of the Code” requirements in s 20 of the Act), and to consider whether the HDC should be guided by
the health sector principles.
Section 7 (health sector principles) is set out in full below, and while many intentionally go beyond
the point of delivery of services by providers (you will be aware of the recent mahi done by the
HQSC in developing the Code of Expectations setting out how heath entities must work with
consumers, whanau and communities in the planning, design and delivery and evaluation of health
services and incorporating the health sector principles), it would appear that in many respects, the
Code of Rights could also speak to the health sector principles directly.
7Health sector principles and/or the Privacy Act 2020
(1)
For the purpose of this Act, the health sector principles are as follows:
(a)
the health sector should be equitable, which includes ensuring Māori and other population groups—
(i)
Information released under the Official Information Act 1982
have access to services in proportion to their health needs; and
(ii)
receive equitable levels of service; and
(iii)
achieve equitable health outcomes:
(b)
the health sector should engage with Māori, other population groups, and other people to develop
and deliver services and programmes that reflect their needs and aspirations, for example, by
engaging with Māori to develop, deliver, and monitor services and programmes designed to improve
hauora Māori outcomes:
(c)
the health sector should provide opportunities for Māori to exercise decision-making authority on
matters of importance to Māori and for that purpose, have regard to both—
(i)
the strength or nature of Māori interests in a matter; and
(ii)
the interests of other health consumers and the Crown in the matter:
(d)
the health sector should provide choice of quality services to Māori and other population groups,
including by—
(i)
resourcing services to meet the needs and aspirations of iwi, hapū, and whānau, and Māori (for
example, kaupapa Māori and whānau-centred services); and
(ii)
providing services that are culturally safe and culturally responsive to people’s needs; and
(iii)
developing and maintaining a health workforce that is representative of the community it serves; and
(iv)
harnessing clinical leadership, innovation, technology, and lived experience to continuously improve
services, access to services, and health outcomes; and
(v)
providing services that are tailored to a person’s mental and physical needs and their circumstances
and preferences; and
(vi)
providing services that reflect mātauranga Māori:
(e)
the health sector should protect and promote people’s health and wellbeing, including by—
(i)
adopting population health approaches that prevent, reduce, or delay the onset of health needs; and
(ii)
undertaking promotional and preventative measures to protect and improve Māori health and
wellbeing; and
(iii)
working to improve mental and physical health and diagnose and treat mental and physical health
and/or the Privacy Act 2020
problems equitably; and
(iv)
collaborating with agencies and organisations to address the wider determinants of health; and
(v)
undertaking promotional and preventative measures to address the wider determinants of health,
Information released under the Official Information Act 1982
including climate change, that adversely affect people’s health.
(2)
When performing a function or exercising a power or duty under this Act, the Minister, the Ministry,
and each health entity must be guided by the health sector principles—
(a)
as far as reasonably practicable, having regard to all the circumstances, including any resource
constraints; and
(b)
to the extent applicable to them.
(3)
In subsection (1)(d), lived experience means the direct experience of individuals.
Clinical Comment – Right 10 – Right to Complain
We would like more clarity of the meaning of Right 10 – the right to complain, in particular
subsection 7.
Staff can take the view that they have 20 working days to respond to a complaint, without proper
consideration of the 10 working day review. Confusingly, Paragraph 4 states that there must be at
least monthly progress updates – which leads some staff to infer that they have a month to
respond. It is also noted that paragraph 4 deals in calendar months, while paragraph 7 deals in
working days. There has been a suggestion from our clinical people that Right 10 could be clarified
for both consumers and providers if the timetable and complaint process milestones were stated
more explicitly,
I hope the above is helpful, and look forward to talking more as this work continues.
Ngā mihi nui,
Tara
Tara McGibbon (she/her)
Interim Chief Legal Counsel
Office of the Chief Executive
īmēra: [email address]
Ph:
42-52 Willis Street, Wellington
and/or the Privacy Act 2020
Information released under the Official Information Act 1982
10-Mar-23
Community Alcohol and Drug Services
Pitman House
50 Carrington Rd
Point Chevalier
1022
Kia ora HDC
Thank you for the opportunity to make this submission on behalf of the consumer team at Community
Alcohol and Drug Services in Auckland.
Community Alcohol and Drugs Services (CADS) Auckland is the largest provider of alcohol and other drug
treatment services in NZ. Our services include CADS Counselling Service, CADS Medical Detoxification
Service, CADS Auckland Opioid Treatment Service, CADS Dual Diagnosis Service, CADS Youth Service and the
CADS Pregnancy and Parental Service. CADS provide daily low threshold easy access clinics at five locations
and 23 regular satellite clinics.
The consumer team work with CADS clients, leadership, and teams, to ensure CADS is responsive to the
needs of the people using the services. Our work rests on important foundation documents including Nga
Paerewa: Health and Disability Services Standard and the Health and Disability Code of Consumer Rights.
We make The Code available in all reception areas: we have framed posters on our walls and brochures are
given to all clients at their first presentation when clinicians explain to clients that they have rights including
the right to be fully informed about how and why their information is collected, stored and shared.
Embedding The Code into CADS’ practice has had a number of positive outcomes, perhaps the most
significant being that over the years it has become apparent that more clients seem aware that they have
rights! Not only that they have them but that they will be supported to enact them.
Dividing The Code into 10 rights makes it easy to remember and easy to describe to others.
Simple headings like Mana/ Respect, Manaakitanga/ Fair treatment etc makes it easy to work out exactly
what issue one is dealing with. For example, if a client phones unhappy with some aspect of their treatment
it is easy, while they speak, to determine which right may have been breached and then to help the client
work out how they would like the issue addressed.
and/or the Privacy Act 2020
Knowing they have the right to complain and that the service will actively support them through the process
reassures people that their complaint will be taken seriously and will not affect their current or future
relationship with the service. Although all staff members can hear and record a client complaint it is common
for this to be undertaken by the consumer team. We explain to people their rights and the complaint
Information released under the Official Information Act 1982
process. This is reiterated to the complainant once the complaint is entered into the e-system as the
complainant is sent an acknowledgement of receipt and a written outline of the process.
The main challenge when working with the Code and clients is when the client’s issue pertains to a clinical
decision they are unhappy about; on these occasions it can be difficult to see how their complaint fits with
the ten Rights.
Our team has been working with the Code for over 20 years and continue to find it easy to work with, easy
to explain to clients and whanau, and easy to support. Simplicity is the key.
We acknowledge that awareness of The Code varies around NZ. People are better informed in some places
than others and few AOD services have consumer roles that work alongside clinical and management teams
to support the embedding of Rights in daily practice and support clients to ensure those Rights are met.
Many clients do not feel confident to use the complaints process of their local service or of the HDC; just
because there are few complaints coming from this sector does not mean people are satisfied with all
aspects of their care and service delivery.
Perhaps more active promotion of the Code is required – not just to existing clients but wider – a public
campaign would be one way to light the spark of knowledge.
Thank you for the opportunity to contribute to this process. We hope this information will be useful.
We can be contacted on (09) 815 5830.
Ngā mihi
Sheridan Pooley
Regional Consumer Advisor
CADS Auckland
Ph (09) 815 5830 ext
DD
and/or the Privacy Act 2020
Information released under the Official Information Act 1982
TeWhatuOra.govt.nz
PO Box xxx, City, Postcode
Waea pūkoro: +64 21 123 4567
Level 4, 56 The Terrace
Wellington 6011
New Zealand
14 March 2023
Ms Rose Wall
Acting Health and Disability Commissioner
By email: [email address]
Tēnā koe Ms Wall
Health and Disability Commissioner Act and Code of Health and Disability
Services Consumers Rights
Thank you for the opportunity to provide feedback in shaping the scope and structure
of the review of the Act and the Code. This is a pivotal time in history with significant
changes in Health and Disability systems, providing a unique opportunity to consider
change to align with contemporary practices and contexts.
We welcome an ambitious review informed by pertinent literature and data. This will
include consideration of your Te Tiriti obligations, recent observations from the UNCRPD
examination, interim recommendations from the Royal Commission of Inquiry into
Abuse in Care, and insights from the ongoing Waitangi Tribunal Health Services and
Outcomes Inquiry (Wai 2575).
We would anticipate a thorough exploration of the current Code and the Act, and the
consumer experience, so that future approaches can achieve greater effective advocacy
and resolution by disabled people, whether their issues relate to disability support
services or health.
We would expect to see the Principles of Enabling Good Lives (Principles - Enabling
and/or the Privacy Act 2020
Good Lives) considered throughout the review process, and reflected in future changes
to the Code, Act and associated procedures.
The voices of disabled people need to be heard and we encourage the inclusion of a
range of stakeholder and consultation processes, particularly for tāngata whaikaha
Māori and others with intersectional experiences (ie the rainbow community).
Information released under the Official Information Act 1982
In summary, Whaikaha offers the following key considerations as you look to establish
the scope of your forthcoming review:
Visible alignment of
Tāngata whaikaha Māori and whānau whaikaha
review structure with
Māori will expect the review and subsequent
the articles of Te Tiriti o changes are framed by Te Tiriti and meets the
Waitangi and relevant
needs of Māori.
UN Conventions
Authentic disabled voice must be included in the
scoping and review process. This will require a
range of approaches, including online and face to
face consultations.
Additionally, the following international instruments
have relevance:
Convention on the Rights of Persons with
Disabilities (CRPD) | United Nations Enable
Convention on the Rights of the Child | OHCHR
United Nations Declaration on the Rights of
Indigenous Peoples | United Nations For Indigenous
Peoples
Exploration of systemic
It is acknowledged that disabled people will have
relevance to disabled
cause to raise complaints in a range of settings.
people
At this time, given the separation of disability
support services from health, consideration should
be given to how relevant and effective the Code and
complaints resolution practices has been for
disabled people, their whānau and allies.
This includes reviewing the relevance and
effectiveness of the processes for resolution and
investigation of complaints by disabled people,
whether they be about health or disability services.
This should include reviewing any data available
about the number and types of complaints by
disabled people and the outcomes of such.
Consideration should also be given to how the
principles of Enabling Good Lives underpin how
and/or the Privacy Act 2020
disabled people interact with the HDC, and how
these, in turn, are reflected in the Code.
Mapping the Code of Health and Disability Services
Consumer Rights alongside the principles of
Information released under the Official Information Act 1982
Enabling Good Lives would enable exploration of
this alignment.
The Royal Commission of Inquiry into Abuse in
Care, the High Needs Review in education, and the
ongoing Waitangi Tribunal Health Services and
Outcomes Inquiry (Wai 2575) are relevant to the
review process:
Home | Abuse in Care - Royal Commission of
Inquiry
Highest Needs Change Programme – Education in
New Zealand
Wai 2575 Health Services and Outcomes Kaupapa
Inquiry | Ministry of Health NZ
The voices of disabled
Again, it is noted that authentic disabled voice must
people in the review
be included in the scoping and review process.
process
Consideration needs to be given to a range of
approaches, including online and face to face
consultations.
The voices of disabled people are separate from the
voices of whānau and advocates, who should also
be considered stakeholders in a review process.
A review of advocacy, representation and decision-
making processes will also be relevant, including
discussions about the options for substituted and/or
supported decision making arrangements.
Role of the Advocacy
It will be timely to review the access that disabled
Service within the
people have had historically to the Health and
Health and Disability
Disability Commissioner and the Nationwide Health
Commission
and Disability Advocacy Service.
Accessibility
The review process needs to be equitable and
accessible.
The review process needs to be supported by
alternate formats Alternate formats - Ministry of
Social Development (msd.govt.nz). It is noted that
the timeframe and costs associated with this will
and/or the Privacy Act 2020
need due consideration.
Looking forward, improvements need to be made to
the accessibility, streamlining and ease of use of
HDC process.
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Timeframes for engagement and response also
require review.
Independent complaints Given the separation of the health and disability
mechanism
systems in 2022 it is timely to review the scope of
complaints that come to HDC. The current HDC
system reviews complaints of health services and
complaints of disability services.
Over the last few years members of the disability
community have asked for an independent
complaints mechanism for the disability support
system, claiming that the HDC process does not
adequately enable disabled people and their
whānau to report breaches of rights, abuse, and
neglect in a timely and effective fashion.
We recommend that the HDC review considers this
request, either as an opportunity to strengthen the
HDC approach to better meet the needs of disabled
people, or to recommend the establishment of a
separate independent complaints mechanism for
the disability support system.
With the enactment of the EGL principles and
increased access to personalised budgets we will
have a new service delivery climate that may well
benefit from an independent complaints mechanism
for the transforming disability support systems.
Whaikaha welcomes this opportunity to provide input and will continue to be available
for further discussions as appropriate. We recognise there are always financial and time
constraints to any review and remain interested to work with you to maximise the voice
of disability community in addition to providing input from Whaikaha officials.
Ngā mihi
and/or the Privacy Act 2020
Brian Coffey (he/him)
Acting Deputy Chief Executive Policy Strategy and Partnership
Whaikaha | Ministry of Disabled People
Information released under the Official Information Act 1982
| Whaikaha.govt.nz
