“Parents are reporting to us that they are being asked by NDIS Planners to establish formal guardianship or to become a plan nominee for their adult child with an intellectual disability in order to participate in the Planning process. Neither of these are least restrictive practice and we are concerned that Planners and LAC's are not versed in the legalities. Further, we are concerned for people, who no longer have families in their lives, whose service providers are making an application to have distant relatives made the guardian, or formal guardians and administrators from the Public Advocate or Public Trustee appointed.”
-Future Living WA
What’s the deal with decision making?
Such a great question! The right to make your own decisions. It doesn’t get more fundamental than that when considering what makes us human. Questioning a person’s capacity to make decisions is one of the gravest insults one can make, yet in disability it can be thought of like an item on a grocery list. The assumption that people with disability have the right to make their own decisions, and should be given every support to do so, is a transgressive idea in our society. And as with any rights based social change, implementation can get a little tricky.
Where the concept of the right to make your own decisions gets especially complex is in the domain of ‘substitute decision making’, such as guardians, administration and nominee arrangements. Why? Because these arrangements can be experienced both as a tool for independence and greater decision making if it’s done well, AND oppression and lack of control if it’s not.
What are these rights for people with disability to make their own decisions?
As a nation we agree to the rights of people with disability to make their own decisions as signatories to the United Nation Conventions on the Rights of People with Disability. In an NDIS context, we implement these rights as a bedrock of the Scheme. The NDIS Act Guiding Principles state that people with disability share the same rights as other Australian’s to make their own decisions and to exercise choice and control in their lives.
To ensure that people can exercise this right to make decisions, some people require support to reach their legal capacity. This includes ‘safeguard supports’, like administration, guardianship, nominees and so on. These have been, and continue to be, important functions which are vital for people with disability to access their rights individually and systemically.
What are guardians, nominees, trusts and administration? Why so many and what’s the difference between them?
All of these options do different things. They operate either at the state or federal level, and usually can’t operate at both. This dual system can really complicate life for people who have more than one order within different jurisdictions and powers.
A guardian is an individual who is judicially appointed to act as though they are ‘in the shoes’ of the person with disability, and makes decisions for that person. There are National Standards of Public Guardianship for publicly appointed guardians, which emphasise that the person with a disability must be supported to make their own decisions as much as possible. This means that the guardianship order should be limited to the area where the person needs support, such as housing, or medical treatment decisions. If possible, orders are time limited. Family members can also be appointed as guardians. Guardianship roles are used to make decisions under state laws, and the legislation may differ from state to state.
Administrators/ trustees are state based and manage the persons’ financial affairs. This may include applying for and managing pensions, paying bills, banking, and in some cases assisting people to access legal rights such as initiating litigation. They can be an independent person through State Trustees or similar, or a family member.
Nominees are part of the federal system, and are used to identify someone who can assist in the NDIS and/or Centrelink decision-making. The NDIS operational guidelines says a nominee should be appointed if the Participant asks for it, and that every attempt should be made to assist the Participant to develop their own capacity. They also state that ‘it is only in rare and exceptional circumstances that the NDIA will find it necessary to appoint a nominee for a Participant who has not requested one’.
The above isn’t an exhaustive list of who can make decisions for a person who might not have capacity (we won’t get into decisions about who has capacity here, it’s an article for another day). Although removing a person’s ability to make their own decisions is a pretty big deal, the oversight of these orders varies depending on the jurisdictions. If you need a guardian or administrator in Victoria for example, you will need to go before an independent tribunal (VCAT) to ensure a rights based approach is adhered to. Whereas in federal legislation (Centrelink, NDIS) it can happen without much oversight or review.
What’s best practice? Can I get a Pina Colada by the pool at the Last Resort?
Best practice is to use these orders as minimally as possible. A person’s right to make their own decisions needs to be balanced against protections for people who are at risk of exploitation or harm. Every order should:
Be a last resort – when there are no other ways to assist the person to make their own decisions.
Be least restrictive as possible - only apply to the area that needs support, such as medical or housing decisions, and not be a wholesale removal of the person’s decision-making autonomy.
Be time-limited - only be in place while the person needs the support, and removed when the need is met.
So why is it being pushed for if it’s Last Resort?
Providers, Planners and LACs might default to insisting on these orders because it appears to be a great option that’s in the best interest of the Participant. These orders seemingly provide a clear path for people with disability to be supported and have their voices heard, while making it clear to all parties who has decision making authority. The problem with this approach is that while it may be well intentioned, and right for some people, it can lead to situations where the Participant’s voice is diminished, and disenfranchised from the decision making process, rather than enhanced.
How can we make it better?
There are a couple of ways to harness good intention into better outcomes:
One of the simplest things you can do is assume capacity exists in every person, always. Then, the conversation shifts from a blanket ‘that person doesn’t have capacity’ to ‘where do they have capacity? What are the gaps? How do we support the person to fill the gaps in the least restrictive way?’
By putting a lot of resources into building a person’s capacity to make their own decisions, you are investing in their human rights. We need to start to understand how to apply human rights in everyday practice. And this is really hard. All big change is hard.
Can the same result be achieved less formally?
Families. They’re easy, aren’t they? Difficult conversations with families can be challenging, but sometimes a conversation about what supports a person needs, or identifying where a person has grown and doesn’t need support, is all that is needed.
Who will benefit from this application?
Is the drive for representation about the best outcome for the person OR is it just simpler for the NDIS, the LAC, the service delivery folk, the family, or another party? Clearly assigned responsibility about who can make decisions certainly makes it easier for decision makers, but it can come at a cost for people with disability.
What are the checks and balances?
If there is no other way forward as the person is at risk, what are the checks and balances put on the order to make sure it is a least restrictive practice in the future? Building examination of the current arrangements (nominees, guardianships, administration) into every Planning meeting can help identify capacity building opportunities that will reduce the scope and time of the orders.
What’s the definitive solution?
Definitive solution. Hmmmm. In the NDIS, as in life, there is rarely such a thing as a definitive solution, and such is the case with your question.
What we can do to drive best practice is to recognise that this is an area of enormous import and that we have to keep engaged. What Australia is doing with NDIS is so revolutionary that every tiny component represents seismic change. So the answer is:
1. Keep plugging away at changing conversations, advocating, educating, and engaging the NDIA at every level. There’s a lot happening in this area of law, and changes are coming which will keep this discussion alive and moving, such as a new Act in Victoria in 2020.
2. Work with state Legal Aids, Human Rights Commissions, state and federal Ombudsmans and Public Advocates. They all have a responsibility to ensure that people with disability are able to make their own decisions in line with our obligations under the United Nations.
3. Keep up the dialogue with the NDIA - if a well intentioned policy to identify capacity is having an adverse effect, the NDIA needs to know.
4. Training - Many people don’t understand how the various mechanisms work. So all organisations could consider training staff in the legal orders and how to promote best practice.
Yes it’s exhausting, but look what we have built from our advocacy.