Supporting People with Cognitive Impairments and the NDIS

Dr John Chesterman, the Manager of Policy and Education at the Office of the Public Advocate-Victoria, is a strong advocate for human rights and was among the key personality speakers at the 2015 National Disability Summit.

The NDIS and Consumer Choice

The underlying philosophy of the NDIS is that of consumer choice, which raises the following questions:

• How are people with disability being supported to make choices?
• To what extent are substitute decision makers being appointed to make NDIS choices for people with disability?

According to Dr John Chesterman from the Office of the Public Advocate (OPA), we should recognise that 98% of the support for people with decision-making disabilities is provided by their families and their carers. The support they informally provide does not need any formal appointment as a decision maker or a supporter for their decision making.

To manage the complexity of this appointment, the State and Territory Federation Governments state that the appointment of substitute decision makers can be made by guardianship tribunals, which makes the OPA the guardian of last resort.

Should they lose capacity to make decisions themselves, the OPA has enduring powers of attorney at state level so individuals can appoint their own substitute decision maker. With the NDIS scheme, nominees can be appointed by the relevant CEOs of the launch sites, which allows them to have a substitute decision-making role and make NDIS decisions for participants.

On the Appointment of a Substitute Decision Maker to an NDIS Participant

Dr Chesterman stresses that clarity around the right time for substitute decision making for NDIS participation, as there currently isn’t any crystal clear regulations covering this. The OPA also believes that guardianship should be the last remaining option as it does not fit in anyone’s interest and is not particularly cost effective. Indeed, they should only be considered when the participation in the NDIS opens up the need for a decision on significant matter that the person is unable to make themselves and where there is no less restrictive alternative to the appointment that exists.

This is because people with disability should be supported where at all possible to make and implement their own decisions.

According to John, despite this fundamental principle, the federal government’s policies on guardianship do not sit with state-based guardians and/or administrators. “There is an unevenness there,” he explains.

“The analogy I would draw is the rail gauges that don’t meet on the state borders.  Some clarity is needed there and that is something that we think can be done through amendment of the NDIS Act.”

A report on equality, capacity, and disability in Commonwealth laws by the Australian Law Reform Commission recommended that supported decision making be given greater focus in the NDIS, as well as the need to amend the NDIS Act to provide for the role of supporters and to provide for the role of representatives.

Dr Chesterman pointed out the significance of one of the report’s recommendations that

“Even when you have someone substituting their own decision making for an individual, they should still be guided by the rights, will, and preferences of the individual—what the person themselves would have done if they had been making that decision themselves.”

With this, the report expounded on their recommendation that for a successful implementation of this procedure, substitutes should be looking their past behaviour and what would they have done in this situation and how their decisions should be guided by that.

The Transition to a Safeguards Framework Consistent with National Standards

According to Dr Chesterman, State-based protections would continue while the process is ongoing, with the various Council of Australian Governments agreements with the launch sites set out. In the longer term there will be a move to have a nationally consistent risk-based quality assurance approach.

Currently, at state level in Victoria, the safeguards framework includes the following key members and provisions:

• Community Visitors
• Disability Services Commissioner
• Senior Practitioner
• Protections contained in various legislative provisions, including the Disability Act, the Mental Health Act, the Guardianship and Administration Act , the Supported Residential Services Act (for private proprietors), and the Charter of Human Rights and Responsibilities Act.

In the course of defining the necessary elements that should be contained in a nationally consistent risk-based quality assurance approach, it should be ensured that: (a.) the existing safeguards should not be lowered in any jurisdiction, and (b.) that current protections should be, at a minimum, maintained and preferably improved.

In this regard, the OPA has outlined the following points:

• Personal choice should be maximised and supported; guardianship should be considered as a last resort, not routinely; and the usage of NDIS nominee provisions should be closely monitored
• Advocacy support
• Clear mechanism for complaints
• On-site monitoring
• Investigations in situations of concern by an independent statutory authority

The Proposal on the Quality and Safeguarding Framework for the National Disability Insurance Scheme

As for the proposition, five key elements have been enumerated and they are as follows:

1. NDIA Provider Registration

The options to be taken into consideration include basic registration requirements, additional registration conditions, mandated independent quality evaluation requirements, and mandated participation in an external quality assurance system.

2. Systems for Handling Complaints

When looking at the systems for handling complaints, it should be noted that various complaints will be rising from the core of the matter and this include those on NDIA-related decision, complains on service provision, on participation among others. Here, the following points should serve as a guide:

• The importance of an NDIS complaints system that is independent from providers of supports.
• The determination of where the NDIS complaints system would be most applicable: on disability-related supports funded by the NDIS, on all funded supports, or on all disability services regardless of whether they are funded by the NDIS.
• The powers a complaints body should have.
• The identification of the role of community visitor schemes in the NDIS if the need should arise.

John has emphasised the need to encourage people that they can complain and to keep them aware on the process of filing their complaints, noting the success in the Victorian Disability Services Commissioner.

In addition, Mr. Chesterman noted that the typical market protection mechanisms such as the complaints and survey-based monitoring is not applicable in the same manner as to the provision of services to people with significant cognitive impairment and that monitoring the general wellbeing of the person can only be done by visiting them.

3. Ensuring Staff Are Safe to Work with Participants

The Productivity Commission called for community visitors to be one aspect of the monitoring provided by the National Disability Insurance Agency and likewise suggested that the OPA scheme on Community Visitors be considered the prime model for those jurisdictions that do not have any existing community visitors plans as of yet.

The use of volunteers and the production of the annual report should be mentioned when talking about critical factors covered by the Community Visitors program. The program also proves beneficial in its independence from service providers and in its regular visitation that helps to get the organisation familiar with the individuals and their communication styles.

There may also be a need to specify in the federal legislation the clause on Community Visitors visiting on the occasion when NDIS funds are being used for accommodation purposes and when the provision of accommodation and support are associated with or managed by or on behalf of the provider of the disability service.

For the transition and under the proposal, ensuring the safety of the staff to work with participants is also being heavily considered. Under this program, two questions are being weighed: who should make the decision on whether employees are safe to work with people with disability and how much information about the person and his history is necessary to ensure they are safe to work with people with disability and impairment?

To resolve these questions, four options have been provided: risk management by employees, referee checking requirements or police checking, working with vulnerable people clearance, and creating a list for barred persons.

4. Safeguards for Participants Who Manage Their Own Plans

5. Minimising and Elimination of Restrictive Practices in Supports Funded by NDIS

There are uneven practices in the country when it comes to authorisation processes for restrictive practice.  In some jurisdictions such as those in Queensland, for instance, guardians consent to restrictive practices while guardians do not consent to restrictive practices in Victoria.  We have the senior practitioner with whom behaviour support plans must be placed before disability service providers can finally use restrictive practices.

At the proposition, four options were enumerated, and this included the voluntary code of practice, substitute decision makers should be formally appointed guardians (Queensland), providers can be authorised to make decisions only under specific conditions only, and restrictive practices can only be authorised by an independent decision maker.

The Missing Pieces

In closing his presentation at the National Disability Summit, John identified the important points that he believes are missing from the consultation paper.

For one, the paper does not include a detailed on the safeguarding framework paper about supported and substitute decision making, specifically how people with disability can be supported in making their own decisions and the instances when it is most appropriate and necessary for substitute decision makers (guardians and nominees altogether) to be appointed.

The paper on the safeguarding framework also missed to include advocacy support that will enable the evaluation of the extent to which the system will be supporting vulnerable people. In terms of investigating situations of concern, John supports the need to authorise the Office of the Public Advocate to conduct investigations where situations of concern arise and where such situations do not carry any obvious criminality or any obvious health-related concerns.

Finally, there is a significant need for everyone to contemplate on the consumer choice philosophy that is working for those people with cognitive impairment, particularly on how they are being supported to make decisions and when decisions will be made formally or informally for them (instead of by them).

Dr John Chesterman closed his talk by encouraging awareness among the public at how we are at a critical time in the development of the safeguarding framework for the country and how submissions, recommendations, and other forms of support will be most useful and beneficial for everyone concerned.