We are all users of health services at some stage in our life, and people with FASD and their caregivers, families and whānau use health, mental health and disability services a lot more than most.
Two aspects of health services in Aotearoa are currently under review – the Health and Disability Commissioner Act 1994 (the Act) and the Code of Health and Disability Service Consumers’ Rights (the Code).
This is very important for anyone with FASD or those supporting them – it’s an opportunity to contribute to the review by raising any issues and concerns we may have.
FASD-CAN will soon be making a submission to the review on behalf of our members, and we want to give you an opportunity to contribute to what we have to say.
This does not limit you from also making your own independent submission to the review.
NOTE: There is information about the Act and the Code at the end of this document – read this first if you’d like to know more before you give us your feedback.
If you are concerned about other areas covered by the Code and the Act that you think should also be considered, please feel free include these as well. Practical examples of what has happened from your own lived experience are always very useful to include in submissions.
If you want to delve deeper, you can access the consultation discussion document for the review here: https://review.hdc.org.nz/consultation-document/
If you would like to contribute to this submission please email our Principal Advisor, Kim Milne, with the information you wish to share by 5pm Wednesday 15 July at the latest.
Kim can be contacted at: [email protected].
You can also make your own personal submission by answering all or some of the questions in the online survey at review.hdc.org.nz (or by downloading it and filling it in), or by emailing [email protected].
Excerpts taken directly from the HDC website – 22 May 2024
The Health and Disability Commissioner (HDC) is an independent Commissioner responsible for protecting and promoting people’s rights under the Code of Health & Disability Service Consumers’ Rights (the Code), including by resolving complaints when people feel their rights aren’t being respected.
The Code establishes the rights of people using health, mental health, and disability services, and the obligations and duties of providers to comply with the Code. It is a regulation under the Health and Disability Commissioner Act 1994. The Act and Code were established to ensure that people are treated as partners in their care, and have help to resolve issues and hold people accountable when this doesn’t happen.
The HDC considers complaints about the quality of health and disability services. They decide whether there has been a breach of someone's rights under the Code.
The Code applies to any person or organisation that provides a health or disability service. It applies to public and private facilities and to paid and unpaid services. It gives patients the right to be treated with respect, receive appropriate care, have proper communication and be fully informed so they can make informed choices. The provider of health and disability services must tell people about their rights and enable them to be used.
The Code covers all registered providers (health professionals) such as doctors, nurses, and dentists. It also covers other types of provider, such as Rongoā Māori, naturopaths, homeopaths, acupuncturists, massage therapists, counsellors and support workers.
Right 1: The right to be treated with respect | Mana
You should be treated with respect, including respect for your personal privacy.
Your cultural, religious, social and ethnic needs, values and beliefs should be taken into account.
Right 2: The right to fair treatment – freedom from discrimination, coercion, harassment and exploitation | Manaakitanga
Your age, gender, race, beliefs, marital or family status, employment, sexual orientation or disability should not affect your treatment.
Services should be delivered without any form of force, threat or harassment.
Right 3: The right to dignity and independence | Tū rangatira Motuhake
Your dignity and independence should be respected when receiving services.
Right 4: The right to services of an appropriate standards – good care and support that fits your needs | Tautikanga
You should expect services to:
Providers should work together to ensure you have quality care.
Right 5: The right to effective communication – to be told things in a way that you can understand | Whakawhitiwhitinga whakairo
You should be given information in a way that helps you to understand it.
You should be able to request a competent interpreter, if you need one and it is workable to provide one.
Communication should take place in a way and place that supports open, honest and effective two-way discussion.
Right 6: The right to be informed – to be told everything you need to know about your care and support | Whakamōhio
You should always be given:
You have a right to request and receive a written summary of information.
Right 7: The right to make an informed choice and to give informed consent – to make choices about your care and support | Whakaritenga mōu ake
You should receive a service only when you have made an informed choice and given your informed consent.
You should be considered competent to make choices and give consent, unless a provider has reasonable grounds to think otherwise.
If your competence is reduced (eg, you are a child), you should still make choices and give consent at the level of your ability.
If you are unable to give your consent (eg, you are unconscious), services can be delivered but they should be in your best interests. Providers should first try to find out whether services would be consistent with your wishes, including talking to available family and close friends.
You may make a decision about a future health care procedure, if this choice is legally allowed.
You should consent in writing if you agree to being involved in research, an experimental procedure, a general anaesthetic, or if significant adverse effects are possible.
You may refuse services and withdraw your consent.
You may ask to change to another provider if this change is practicable.
You can decide whether your body parts or bodily substances may be used or stored.
Right 8: The right to support | Tautoko
A support person(s) of your choice may accompany you, as long as it is safe and it does not affect other people’s rights.
Right 9: Rights during teaching and research – to decide if you want to be part of training, teaching or research | Ako me te rangahau
All of these rights apply if you are going to be involved in teaching or research.
Right 10: The right for your complaint – and for the complaint to be taken seriously | Amuamu
You may make a complaint about a provider in any form appropriate to you.
Providers must try to resolve your complaint fairly and as quickly as possible.
You should be told of your provider’s complaints and appeals procedure.
You should be kept informed about the progress and result of your complaint.
You should be told about who can help with your complaint, including advocates and the Health and Disability Commissioner.
The full Code of Rights is available here.
