The following paper outlines crucial issues in relation to the development of a National Disability Research Agenda to ensure positive outcomes for people with a disability in general and those who are ageing in particular.
Principles
The Futures Alliance holds that all research approved, funded and undertaken:
• Be inclusive of all stakeholders, especially people with a disability
• Have the capacity to respond to the needs of specific disability groups and the unique issues of each group
• Utilise people with disability as participants in research and as co-researchers
• Be accessible to all stakeholders
• Be disseminated to inform policy development and practice
• Has the capacity to be practically applied
• Supports collaborations between researchers and practitioners/services and those who will benefit from utilising research and evidence based practice. Thus actively encouraging links between research, policy and practice.
To fulfil these Principles the following strategies are crucial:
Inclusion of People with Disabilities
The research agenda needs to be appropriately informed by how people with disability wish to live their lives and the types of support that they may need. Therefore, the process of determining a research agenda needs to be sufficiently independent of government and the political process, and inclusive of people with a disability.
The International Classification of Functioning Disability and Health (ICF), identifies disability as a universal phenomenon. It is important, therefore, that disability research is no longer marginalised within some nominal ‘disability’ focus. It should be inclusive of a whole of life approach, also recognising that all people at some time in their lives will experience disability.
The Futures Alliance has a particular interest in the inclusion of health within a national disability research agenda, given the identified gap in research for this group and the complex intersection between policy and practice between health and disability services. It is critical to reduce a silo approach to disability research to ensure a cross disciplinary and whole of government and community approach.
The research process needs to actively value, build and support the capacity of people with disability (including people with intellectual disability) to be included in all aspects of decision –
making and research. This is essential to ensure that the right questions are being asked and answered.
It is also important for the NDRA to be able to assist in capacity building of the non-government sector to enable more research to be conducted at the service level. Sponsorship of doctoral candidates, seeding grants, assistance with grant applications, funding for people with disability to access tertiary studies are some of the possible opportunities to facilitate this.
Allocation of Disability Research Resources
Historically, the allocation of funding for disability research has been minute – approximately .005% - compared to the level of investment in health research. The allocation of $10m is a positive start, along with $57 million to be allocated in NSW over 5 years towards disability related research.
In order to support directions under the National Disability Strategy and the NDRA, The Futures Alliance recommends that 1% of resources allocated to services under the National Disability Agreement be dedicated to annual research priorities.
At the present time research is viewed as a luxury add on. However, we believe that adequate research resources are required to ‘lift the bar’ on the lived experience of disability and elevate the status of disability as a mainstream issue and a topic/area of work, of value.
The Futures Alliance is concerned to ensure that Disability research resources are applied to a broad research agenda is inclusive of a range of issues and populations, and is not restricted to the interests and priorities of government disability departments.
Administration of Disability Research Resources
The Futures Alliance calls for research funding allocated for disability research to be administered through transparent mechanisms similar to those of the Australian Research Council and National Health and Medical Research Council processes. (Consideration should be given to using these existing bodies to administer funding for NDRA.)
It is important that the NDRA includes all aspects of disability. By utilising existing structures or models, experienced researchers will be attracted to this field of research, and will in turn engage researchers from other disciplines.
It is imperative that any administrative process be transparent and subject to ongoing review. This would include blinded peer review of applications and the convening of a selection panel of experienced researchers.
Our experience indicates that the current common practice of research commissioned by Administrators falls short in a number of key respects:
• It typically does not include peer review processes throughout the research processes and therefore lacks robustness.
• It is often not publicly available, and;
• There is little clear evidence that much of the research undertaken informs policy and practice.
Communicating Research Outcomes
It is critical that the outcomes of research inform policy and practice and that the information be able to be understood as well as readily available.
This could be achieved through a central clearing house or Virtual Centre of Excellence. A structure such as Australian Housing and Urban Research Institute (AHURI) is a model that we have identified as facilitating the sharing of information, supporting and encouraging researchers. A centre of excellence of this type would support learning and innovation, develop the capacity of researchers, and provide essential training for researchers.
The Futures Alliance recognises the need for government and the disability sector to increase the evidence for effective support practices. By improving the quality of research currently undertaken, whilst increasing the capacity and number of resources available for research, the reliance of administrators on commissioned research to support their evaluation and development activities may be reduced.
Finally, it is critical that commissioned research allow for the results of such research to be published and disseminated in accessible formats, such as easy English and audio formats.
Futures Alliance Research Priorities
The Futures Alliance remains committed to seeking better futures for people with a disability who are ageing. As such we recognise the urgent need for research that specifically targets this population and serves to influence, inform and enhance policy and service provision which meets the needs of this group.
Research topics may include, but not limited to:
• Health impacts of ageing in relation to people with a lifelong disability
• The relationship/interface between the Ageing and the Disability sectors in relation to policy and practice to support people with a disability who are ageing
• Quality of Life Issues for people with a disability who are ageing and their families/carers
• The impact of Individualised Packaging/consumer directed care approaches on the Quality of life of people with a disability who are ageing and their families/carers
• Incidence and Impact of Early onset dementia for people with a disability who are ageing
Summary
- The Futures Alliance welcomes the initiative of a National Disability Agenda.
- We support a process where the central feature of an NDRA is a robust, transparent decision making/resource allocation process, complemented by high quality methodology which includes peer review mechanisms.
- The process would be consumer led and promote collaboration between, researchers, policy makers, service providers, consumers and government.
- This process would be informed by the interests and priorities of a range of groups and structures including consumers, academic bodies and Government, in particular the priorities arising out of the National Disability Agreement.
- The Futures Alliance recommends utilising existing models such as ARC and/NHMRC to facilitate the allocation of resources and oversight of projects.
