Submission

Submitted by: Tony Clark BSc (Hons), MA (Comms), GAICD

The following submission is made by Tony Clark as a user of the NDIS. The submission is informed by Tony’s 30 years of governance experience within the NFP and government sectors.

Tony is an experienced non-executive and executive Director in the not for profit and government sectors. With over 30 years of governance and operational experience including major multi-million infrastructure projects, change programs with the NDIS, and multiple merger and acquisition projects, Tony has a deep understanding of complex local, national and international issues.

As the current Chair of IAP2 Australasia, Tony is working to re-shape Engagement globally. He is also a non-Executive Director of the State Trustees of Victoria, managing over $2.9 billion in assets and supporting over 10,000 of Victoria’s most vulnerable citizens. Tony has also served on other boards including Senswide Employment and Blind Citizens Australia. A particular point of pride is his successful leadership of school mergers in the eastern suburbs of Melbourne which led to the creation of Whitehorse Primary and investments of over $12 million in educational infra-structure.

At the age of 19 Tony was diagnosed with a degenerative eye condition and declared legally blind at 20. Tony harnesses his disability as a great strength and demonstrates that disability does not equate to inability - bringing the great value of lived experience to his community, workplace and the board room.

Introduction

I am pleased to provide the below submission for the consideration of the Senate Community Affairs Committee review of the proposed NDIS Amendment.

As a person with lived experience of disability (blindness) I wish to encourage the Committee to consider several issues to ensure they are embedded. Understanding the breadth of individuals who experience a disability, this submission does not cover all circumstances but will focus on a number of specific areas including:

• Strengthening Clause 10 Definition
• Embedding an Engagement Framework within the legislation to support best practice co-design to meet international benchmarks
• Establish a Ministerial Advisory Committee to support the Minister’s ongoing implementation and improvement of the NDIS
• Embed principles of Universal Design to ensure there are tangible mechanisms to lift sovereign capability in relation to providing services and outcomes for people who experience a disability
• Ensure that the understanding and definitions of ‘Adaptive Technology’ embrace and empower individuals experiencing a disability to make maximum use of the advantages emerging technology to support independence and safety.
• Ensure balanced decisions are made that encourage appropriate self management that do not inadvertently create a monopoly, and actively foster and maintain pride and dignity for those with lived experience of disability who choose to live safely and independently

Clause 10 Definitions

In relation to the provided definitions, I am concerned the scope does not explicitly encompass terms including:

• Choose to live independently.
• Participate with dignity and pride.
• Maintain and manage health.

The above principles are key elements which under pin the definition in clause 10. Consideration should be given to the addition of:

All participants of the NDIS are to be provided the opportunity to ensure that they have the ability and opportunity to live as independently as possible, in a healthy and safe environment.

Co-Design and Adopting of IAP2 Engagement Principles

A core theme from the disability sector is ‘Nothing for us without us’. There is significant concern from those experiencing a disability that services are designed and implemented with poor consultation or none at all. For example, a significant challenge is the ongoing use of the term ‘co-design’. The interpretation of this word has many meanings and often leads to a disjointed set of expectations.

To address the significant community and end user concerns and deliver an improved outcome for all parties, I recommend the Committee consider adopting the national standards recommended by the Australian peak body of Community Engagement, IAP2. Similar principles have already been adopted in the UK and are leading to significantly improved outcomes and community sentiment. Adopting such principles into legislation will drive increased sovereign capability and lead to significant efficiency gains, cost savings, government improvements, and better outcomes for those who experience a disability.

Principles to be embedded into legislation include:

1. An appropriate Engagement Framework will be developed and updated on an annual basis. The framework will include: a. Ensure Authentic Engagement b. Engagement through all service development, rollout and review c. Integrate stakeholder values
2. The NDIA will provide an annual report of its engagement activities to the Senate Community Affairs Committee (or appropriate body) focusing on: a. Participant sentiment b. Engagement activity conducted over the last 12 month reporting period c. Cost efficiencies gained through engagement activity d. Action to effect engagement improvement

The benefits of adopting a strategic approach to engagement are that it will:

• Help build the communities trust in government by building social cohesion
• Help design and implement more effective government policies and programs, leading to improved services and outcomes
• Provide the disability community, including our first nations peoples, the opportunity to input into services and projects providing valuable local knowledge
• Provide government with a channel to promote and increase understanding of its agenda and build public trust
• Provide best practice for the long-term reputation and legacy of being good stewards of the public spend

Ministerial Advisory Committee Powers

I support the proposed shift to enable the Minister to make determinations on tools and definitions. This will remove unrealistic complexity, cost and most significantly time to managing changing circumstances and environments. The proposed changes are sensible and required.

Understanding the critical importance of engagement and user input, I would strongly recommend the establishment of a Ministerial Advisory Committee to support changes. This should consist of a carefully selected set of individuals with lived experience, governance, commercial, government and industry understanding. This committee should be remunerated and be established within the Act with the explicit role of supporting the Minister to make informed choices specifically around the development and administration of the NDIS. This is not a decision-making body but an Advisory body with remit to monitor and support broader community engagement applying best practice governance standards.

This committee should be independent of any department given the potential conflict of interest that exists. Such independence would enable the provision of unbiased and independent advice to the Minister across all major service areas including NDIA, the NDIS Quality Assurance and Standards Committee and Centrelink.

Universal Design

Within the NDIS Review it was clearly acknowledged that there is a lack of sovereign capability in the design and delivery of accessible and useable government services and products. This presents a real and tangible barrier to ongoing quality access and participation by people with lived experience of disability.

The Principles of Universal Design are internationally accepted and adopted across the globe. The Centre for Excellence for Universal Design in Ireland was set up to enact the Government’s commitment to the United Nation Convention on the Rights of Persons with Disabilities (UNCRPD) and their obligation to promote the development of universally designed goods, services and facilities.

Understanding the focus of the NDIS is to support people with lived experience of disability, it is wholly appropriate that Universal Design be embedded into the legislation.

Taking a universal design approach to services, products and environments provides benefits to people with lived experience of disability, supporting mainstream inclusion, and does not disadvantage other members of society.

The Principles are:

• 1. Equitable use, the design is useful and marketable to people with diverse needs
• 2. Flexibility and use, accommodates for diverse set of preferences and needs
• 3. Simple and intuitive to use, easy to understand regardless of user experience
• 4. Perceptible information, information is accessible and usable
• 5. Tolerance for error, minimise risk for users
• 6. Lower physical effort, can be used with minimal chance of fatigue
• 7. Size and space for approach and use, make sure spaces can be used appropriately

For more detail visit Centre for Excellence in Universal Design Ireland

It is time for Australia to follow this example and embed in the Act universal design concepts and co-design methods beyond words and consider adding:

• All tools and services must clearly state how they meet the principles of a universal design approach.
• Require all infrastructure investment to clearly state how universal design processes and standards will be addressed, beyond basic access standards, in all projects specifically

Definition of Adaptive Technology

The significant increase and reliance on technology has made living independently with dignity and pride more reachable. Previous definitions of adaptive technology have been focused on devices and software specifically designed for those experiencing a disability.

Significant improvements in apps, robotics and home automation have enabled individuals such as me to live in a clean, safe, and healthy environment. Mainstream technology has provided the ability to manage my cost of living through managing lighting, ensuring my home is secure and use products that previously where unusable i.e. thermostats for heating and cooling.

Having a guide dog, I also enjoy the excessive hair that comes with a black Labrador. This requires cleaning daily to keep the home safe and hygienic. Technology such as robotic vacuums enable me to maintain a tidy environment independently. Such devices would not be typically included and can also present an opportunity for a tangible saving in terms of the provision of cleaning services by an external provider.

This is but one of many examples. Much of the automation and products are unreachable for those experiencing a disability owing to financial limitations. I recommend that they should, with appropriate assessment, available to be included in an NDIS flexible plan.

Seeking Support and Services

Understanding the need to manage and reduce the rort and fraud by unscrupulous individuals the principle of regulation must be applauded.

There are however several risks which must be managed, and consideration given to practical application.

• Consideration should be given to setting thresholds and categories where registration is not required
• Providing the participant choice and flexibility in obtaining the services of someone they trust

There are many small jobs around the home that require the assistance of a handy person. Small items like a door that needs fixing, small repairs and even moving items. Living in regional Victoria organised and registered businesses providing such services are scarce and difficult to procure.

These services are traditionally provided by local retired individuals through word of mouth on a cash basis. In regulating such services consideration must be given to regional nuances and flexibility be built in.

• Providing price guidelines and easy to use resources to assist participants self-manage.

Self-management is, for those capable, a highly desired objective. Anecdotal experience indicates that there is a significant number of people who are capable of self-management but do not have the confidence. Providing resources, support material would empower people to take control of their plan to deliver better outcomes more cost effectively.

• Consideration given to ensuring the registration burden is not onerous and function as a barrier to choose for participants. The process needs to be robust enough while ensuring it is administratively practical for both suppliers and administrators.

• An inadvertent consequence of applying regulation is it may discourage legitimate small providers creating a monopoly which could lead to pricing increases and poor-quality outcomes with the removal of competition.