Community Healthcare / Health & Healthcare

People with Cognitive Impairments and the NDIS

John Chesterman

John Chesterman

As a strong advocate for human rights, Dr John Chesterman, Manager of Policy and Education at the Office of the Public Advocate in Victoria, talked about “Transforming Disability Service Delivery to Optimise the Social and Economic Participation of People with Disabilities” at this year’s National Disability Summit.

In his presentation, he explained the role of The Office of the Public Advocate (OPA) and how as an independent statutory authority it is primarily aimed at protecting and promoting the rights and dignity of people with disabilities.

OPA also works with volunteers from a diverse mix of backgrounds and professions and as an organisation, possesses a wide variety of skills. Full-time, part-time, retired professionals—regardless of the time they have allocated for coordinating with OPA –  all work to make a difference in their respective communities in promoting the rights of the Victorian’s with disabilities.

The Office of the Public Advocate facilitates training and support and coordinates the management of five volunteer programs including the Community Visitors Program, the Independent Third Person Program, the Community Guardianship Program, the Supported Decision Making Program, and the Corrections Independent Support Officers.

OPA conducts both individual and systemic advocacies and delivers around 200 community presentations every year as part of their community education programs. They also have an advice service facilitating more than 13,000 calls yearly.

Who Makes the NDIS Decisions When Participants Have Cognitive Impairments?

Dr Chesterman talked his presentation with an overview of the recent developments NDIS and people with cognitive impairments.

Launch of NDIS as at July 2014

Launch of NDIS as at July 2014

On the launching of the NDIS, John mentioned that there have been approved plans for 11,029 participants, excluding the residents of two large residential institutions in New South Wales and Victoria, with the average package cost at around $35,000 annually.

In discussing the statistics of the topic, he expressed concern that the highlighted groups make up approximately 63 percent of the participants to date, but there had been no mention made of the significant number of people in the scheme that require assistance in making NDIS-related decisions on funding needs.

When the Productivity Commission released its report that led to the development of the scheme, the commission predicted that around half of the participants would need assistance with daily care needs, communication, and mobility.

As for the Office of the Public Advocate’s involvement, they had volunteer community visitors regularly visiting the Barwon launch site and meetings with the National Disability Insurance Agency. They have acted as advocates for 28 participants in shared supported accommodation and for 31 participants in the residential institution at Colanda, which is the only institution in the launch site.

Making NDIS Decisions for Participants with Cognitive Impairments

The Convention on the Rights of Persons with Disabilities, which was included in Commissioner Susan Ryan’s presentation at the National Disability Summit, highlighted one of the key principles that serves as a solid foundation for the convention: supported decision making.

Dr Chesterman stressed that the Office of the Public Advocate, certainly believes that the NDIS Act should describe a greater description of supported decision making, and should push for this more than it currently does.

A debate has been going on for many decades now in the international human rights realm about this and whether guardianship is consistent with the convention.  The Office of the Public Advocate believes it is, particularly here in Australia.

Last year, the UN committee on the rights of persons with disabilities, released a comment that explained the organisation’s obligation and responsibility to replace substitute regimes for decision making in state’s were Australia is a signatory,

The supported decision making needs the abolition of substitute decision-making regimes and the creation of alternatives for supported decision-making.

Together with all its state and territory Governments as well as many countries across the world, the Australian government was in disagreement with the said committee, and the debate continues.

The NDIS and Consumer Choice

The underlying philosophy of the NDIS is that of consumer choice and the NDIS participation makes way for new choices:

  • 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?

Dr Chesterman acknowledges 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 supporter.

In Victoria, the state trustees are the last resort guardians and there are other trustee companies that can be appointed. Other states have the public trustee so they are administrators making substitute decision-making possibilities that exist at state level.

Are Nominees Being Appointed?

“The short answer to the question is they are not.”

In Victoria, there is no large usage of the provision on the nominee appointments, as is the case for Tasmania and the Northern Territory so definitely that is not something that is being considered in the regions mentioned.

In New South Wales however, over 100 guardianship applications were submitted in the previous year, which indicates that different jurisdictions have different operational procedures and governing policies.

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

The appointment of a substitute decision maker to an NDIS participant could 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.

Transitioning to a Safeguards Framework Consistent with National Standards

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 and the Charter of Human Rights and Responsibilities Act.

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 disabilities, and how much information is necessary to ensure their safety for working with the disabled and impaired?

There is also the challenge on who should decide on the use of restrictive practices. 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 whilst in in Victoria.

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.

In closing, Dr Chesterman emphasised the significant need for the consumer choice philosophy that is working for those people with cognitive impairment, particularly on how they are being supported to make decisions.

He encourages awareness among the public at a critical time in the development of the national safeguarding framework, and how submissions, recommendations, and other forms of support will benefit everyone concerned.

Dr Chesterman will be speaking about “A Nationally Consistent Risk-based Quality Assurance Approach’ for the National Disability Insurance Scheme” at the forthcoming Community Work Conference in Melbourne this July.

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