This article will look at self-advocacy, supported decision making, being an advocate (either as a parent or through an independent advocacy service) and making a complaint.
As a person ages, they will want to make more of their own decisions and let those around them know what they want. It is important your family member is encouraged to speak for themselves. As parents, we need to provide opportunities for our children to build knowledge, understanding and confidence in:
knowing what they want, and
being able to communicate this.
People First New Zealand is a self-advocacy organisation that is led and directed by people with learning (intellectual) disability. People First can help people explore their rights and they have plain language resources on this topic. They have a number of courses designed for people with a learning disability, including:
Work and Your Rights in New Zealand
Money Smarts Made Easy
Keeping Safe Feeling Safe – this is a 10-part course about Bullying, Abuse and Neglect.
What is Supported Decision Making?
Supported Decision Making (SDM) is about having the supports or systems in place that enable any person to make a decision. It recognises that with support almost everyone can make their own decisions.
The purpose of SDM is to ensure the will and preference of the disabled person is understood and that through this process they have greater control and choice over their lives. To enable this to happen the person must be at the centre of this process with the right supports in place to enable them to actively participate in decision making.
The SDM model is an alternative to a substituted decision making model, where another person is given the legal authority to make decisions on behalf of someone else. For example, this happens with a court appointed Welfare Guardian or Property Manager.
In any situation, the disabled person should be supported to participate in decision making (to the greatest extent possible) and those who support them (in whatever capacity) have the knowledge to assist this to happen.
For some young people, they may have had very little opportunity to make decisions. Where people are anxious or hesitant about making decisions … go at the person’s pace and initially build on steps that lead to successful results. Building self-esteem can be an important building block in decision making.
IHC Advocacy run free Supported Decision Making courses around the country. If you’re interested, call IHC Advocacy toll free on 0800 442 442, or email: firstname.lastname@example.org.
Support for Decision Making in Mana Whaikaha
The Personal Advocacy Trust (PAT) has been contracted to help develop the approach for and deliver Support for Decision Making in Mana Whaikaha. This is an initial nine-month contract, with a longer-term contract going up for tender in 2020.
Mana Whaikaha Connectors identify individuals who requires support for decision making. Typically, these individuals don’t have other family members or people in their lives who can assist them. They are then appointed an Advocate from PAT to work alongside them.
As the MidCentral prototype continues, the organisation anticipates that some people who originally identified that they did not need any support for decision making may end up requiring independent advocacy as their circumstances change (ie. their supporters have conflicts of interest or are not working to the individual’s will and preferences).
An important aspect of SDM is having the right communication tool in place so the person can make their wishes known. Communication tools can be as simple as using pictures to elicit a yes or no response, using NZSL (New Zealand Sign Language), or technological aids/computers/apps that assist the person to communicate. Organisations like TalkLink can help find the right assistive technology or aid for your young person.
When people are making decisions, we need to make sure they have all the information they need to make an ‘informed decision’.
The SDM process involves the following steps:
taking the time to get to know the person and how they can be supported to actively participate in decision making
the right information is available in a format that is understandable to that person
the right communication tool(s) are in place
the person understands their options
the person understands the consequences of each option (including risks)
they are able to make decisions according to their will and preferences
informal/formal supports work together to assist the person to achieve their preferences, and
the person is able to explore options and learn for themselves (sometimes things don’t work out, but that’s ok, this is part of the learning process).
There needs to be a balance between exploring options and ensuring personal safety – this is often a complex area as ‘safety’ for one person will mean something entirely different for someone else. Sometimes ‘safety’ can get in the way of living life and end up as a rigorous set of rules which coincides with less options.
The young person should be able to explore the options and make their own decisions. The role of support services is to put the ‘right’ support in place to enable this to happen. The exception to this is if there are concerns that a decision could lead to serious risk of injury or harm to themselves or others. Ethically you or other professionals would need to step in and ensure the person’s safety and wellbeing.
For some people, they may always need some support to make decisions or help to achieve their goals. As parents, we have to learn when to step in and when to step back.
For some young people, they may want someone who can speak on their behalf and represent their interests. A person who speaks on their behalf in this way is often called an ‘advocate’.
Advocates can help a young person express their point of view about issues that are important to them. The people who advocate are often family members, friends of the family, or other professionals that have a good relationship with the young person and/or their family/whānau.
Here is how the dictionary defines the term ‘advocate’- to speak, plead or argue in favor of. An advocate performs several functions:
supports, helps, assists, and aids
speaks and pleads on behalf of others
defends and argues for people or causes.
In short, to advocate you need to:
have a clear understanding of what the person you are advocating/representing wants
encourage the person to take part in all discussions to the level they are comfortable with
gather information (advocates use facts and independent documentation to resolve disagreements and disputes)
understand the ‘system’ or ‘rules’ – these are often not written anywhere but require you to understand who you should speak to, how the system/funding/disability supports and services work, and how to communicate the individuals and/or families point of view, etc
understand their ‘rights’ (legal and ethical)
plan and prepare (prepare for meetings, create agendas, write objectives, nail down and follow up on agreements and resolutions)
keep written records or notes of meetings and phone calls (this is important so you can track, follow up and document events, discussions, and meetings)
ask questions and listen to answers (check you understand who, what, why, where, how and when)
identify problems, propose solutions and plan the future you and your child want (what are your long-term goals for your child and what do you envision for your child’s future?).
What if the family do NOT want to be an active advocate?
If there are family in the individual’s life, but they do not want to be an advocate themselves, then the family (friend, professional or service provider) can access any of the advocacy services listed below. Those who do not have family in their life (either because family doesn’t exist or because family are absent) are the most common group that need independent advocacy services.
As a carer/family/whānau there may be times when you need additional support to advocate on behalf of yourself and/or your family member.
There are several organisations that provide specific advocacy services, these are:
The Health and Disability Commissioner (HDC) enforces the Health and Disability Consumers Code of Rights and provides an independent health and disability advocacy service. HDC Advocacy is available to ‘consumers’ who would like to make a complaint about a health or disability service they have received. This service is free, confidential and independent.
An advocate assists by listening to your complaint, giving you information about your rights and options for resolution, then supporting your option.
fee-for-service independent advocacy for short term issues.
Lifelong advocacy is where a family enrolls their son or daughter in the Trust, and advocacy support commences after the parents have passed away. To secure future support delivery, this service is funded privately through the payment of an enrolment fee. The fee paid is dependent on the age of the individual at the time of enrolment. The lifelong model allows an advocate to support and work alongside a person and recognise and respond to any issues that may arise.
The Trust’s fee-for-service work is paid for on an hourly basis, and can be contracted by families, individuals or providers. Typically, this is focused on resolution of a specific issue, and is not ongoing.
People First New Zealand is a self-advocacy organisation that is led and directed by people with learning (intellectual) disability. People First is part of an international movement fighting for the rights and inclusion of all people with learning disability.
IHC provides advocacy support for people with an intellectual disability in New Zealand. This includes supporting people with an intellectual disability to be self-advocates. Their advocacy toolkit provides lots of useful information for carers/families/whānau. This resource is useful even if your child does not have an intellectual disability.
Citizen’s Advocacy is an organisation based in Auckland that matches people with a long-term volunteer advocate. This is a free service but may have waitlists. They support people with an intellectual disability to advocate for themselves.
CCS Disability Action is a nationwide organisation that provides support and advocacy for people with a disability. At the heart of their vision is a society where all people are included in the life of their community and family. They work with people of all ages and stages across Aotearoa New Zealand.
The purpose of the Human Rights Commission is to promote and protect the human rights of all people in Aotearoa New Zealand. They facilitate resolution of disputes about discrimination.
Other useful organisations include:
Community Law provides legal advice, legal assistance and representation, legal information, legal education and law reform activities. The website has free legal information, factsheets, guides and contact details for local community law centers throughout New Zealand.
YouthLaw (Tino Rangatiratanga Taitamariki) is a community law center for children and young people nationwide. They provide free legal services to anyone aged under 25 who is unable to access legal help elsewhere, or those acting on their behalf.
The Citizens Advice Bureau (CAB) provides information and advice and has services nationwide. Their website has some useful information on complaints and disputes.
The Disabled Persons Assembly (DPA) is an umbrella organisation representing people with disabilities. DPA provides information and advice.
As stated above, the Health and Disability Commissioner is responsible for promoting and protecting the Code of Health and Disability Consumers’ Rights. The Code covers all public and private providers offering any form of health or disability service. You can find some useful tips about making a complaint on the Health and Disability Commissioner (HDC) website.
The process in making a complaint looks like this:
In the first instance, discuss your concerns with the person or organisation you have a complaint with.
Check out the advocacy section of the HDC’s website as this has some self-advocacy tips and a sample letter and complaint form.
If you are not satisfied with your response, you can contact an Advocacy Service (as noted above). Typically, if these concerns are with a health or disability service you would contact a HDC Advocate.
If you are unhappy with the outcome, you can make a direct complaint to the Director of Advocacy – email@example.com.
You can also make a complaint direct to the Ministry you are receiving funding from (ie, ACC, Ministry of Health, Ministry of Social Development, Education, etc).
You can also make a complaint to the Human Rights Commission – if you believe someone has been discriminated against.
This information was put together with assistance from The Personal Advocacy Trust (PAT).