Data collection methodology for the National Disability Insurance Scheme

Australian Government

Australian Institute of

Health and Welfare

Authoritative information and statistics to promote better health and wellbeing

Dr Ian Holland

Secretary

Senate Standing Committees on Community Affairs

PO Box 6100

Parliament House

Canberra ACT 2600

Dear Dr Holland

The Australian Institute of Health and Welfare (AIHW) welcomes the opportunity to provide a submission to the Inquiry into the National Disability Insurance Bill 2012 (the Inquiry). The AIHW has an active role in collecting, analysing and making publicly available information relating to people with disability and the services they receive. Within this context, this submission to the Inquiry highlights the importance of collecting comprehensive data to support valid policy decisions by governments, and to monitor the costs, service delivery and outcomes of the National Disability Insurance Scheme (NDIS).

AIHW’s role in disability information

The AIHW is a major national agency established by the Australian Parliament under the Australian Institute of Health and Welfare Act 1987 to provide reliable, regular and relevant information and statistics on Australia’s health and welfare. It is an independent statutory authority, accountable to Parliament via the Health and Ageing portfolio. The AIHW collects and publicly reports information on a wide range of health and welfare- related matters, including disability, ageing, mental health, disease, injury, hospitals, homelessness, housing, child protection, and health and welfare expenditure.

The AIHW has established expertise in disability care and services-related information and has developed a solid understanding of the issues facing people with disability in Australia, in particular regarding recipients of specialist services. The AIHW has administered the Disability Services National Minimum Data Set (DS NMDS) since 1994 and has developed the required technical infrastructure, staff expertise and processes for data standards (including data processing, database management, and data reporting) to report annually on this data.

The DS NMDS provides reliable and consistent data on specialist disability services provided under the National Disability Agreement. This data is required for a number of national reporting requirements, including AIHW’s legislated flagship publications Australia’s Health and Australia’s Welfare (the most comprehensive and authoritative sources of national information on health and welfare in Australia), the COAG Reform Council National Disability Agreement and the annual Report on Government Services. The AIHW also publishes a range of other disability-related publications, including Changes in life expectancy and disability in Australia 1998 to 2009 (released 23 November 2012) and The use of health services among Australians with disability (released 30 September 2011).

Ensuring robust information for the NDIS

The ATHW’s experience in dealing with statistics across a wide range of existing health and welfare programs suggests the criticality of development of a nationally consistent data

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collection methodology in the planning stages of any new health or welfare program in order to facilitate evaluation and monitoring of new initiatives. A comprehensive nationally consistent data collection should be a key element of the NDIS, to enable the scheme to be effectively managed and facilitate informed judgements about the success of the scheme.

In respect of the operation of the NDIS legislation, this collection will provide an essential basis for:

e the day to day management of the scheme

providing a potential source of information for prospective services users on available services and high-performing service agencies (similar to that provided by MyHospitals: www.myhospitals.gov.au)
accountability and transparency, satisfying public expectations regarding public reporting of the effectiveness of billion-dollar programs
answering relevant policy and program questions, and supporting effective service delivery
ongoing evaluation of whether the legislation is meeting its key objectives (for example, through populating agreed performance indicators and benchmarks relating to the use, outcomes and cost of the program) and
supporting the development of any future evidence-based disability policy. Implementing comprehensive data reporting processes simultaneously with commencement

of the legislation, as opposed to retrofitting these processes, will also be critical to any review

of the operation of the NDIS Act. A cooperative approach, facilitated through agreed rules

regarding collection, compilation, interpretation, reporting and sharing of national

information, should be adopted across all jurisdictions to ensure nationally consistent

information is available.

Such an approach should also include agreed and common data standards and definitions, classifications and protocols for all data collected. This will ensure consistent reporting and comparability of national information, both between jurisdictions and over time, whilst encouraging data reusability, minimising data duplication and facilitating possible future data linkage from multiple sources and sectors. The AIHW has extensive experience in this area, providing leadership in data standards development and maintenance through active participation and leadership in national committees and maintenance of the Metadata electronic Online Repository (METeOR). The AIHW’s approach to developing national minimum data sets through METeOR is considered leading practice.

We understand that not all people with disability will potentially be captured by the NDIS. For this reason, the ability to articulate a story about the use of disability support services by all people with disability, whether they use the NDIS or not, will be critical to governments’ understanding of access to services overall. This will require multiple data systems to be brought together. The AIHW is keen to work with all relevant stakeholders to ensure that a systematic data collection process is implemented.