Disability statistics and the ICF: Q&A during and following webinar
During and for a short time after the webinar on 20 November, questions were invited. The following questions were received and answers are now provided by the speakers.
Question 1:
I understand that the standard disability flag was implemented in the homelessness data collection. Whether AIHW could update us on the result?
Response:
The AIHW’s Specialist Homelessness Services (SHS) NMDS currently contains a standardised disability flag cluster, which assesses the functional status of a person across a range of life areas. The AIHW report Specialist Homelessness services 2013–14 contains a section on clients with a disability. The report is available for free download on the AIHW website:
The AIHW’s 2015 National Prisoner Health Data Collection (NPHDC) included data on the disability of prison entrants. These data were collected in the NPHDC using the standardised disability flag. The AIHW report The Health of Australia’s prisoners 2015 contains a section on disability of prison entrants. The report is available for free download on the AIHW website:.
Question 2:
I may have missed it - but would like to know how informal and formal assistance was defined.
Response:
The analysis was based on the data from the Survey of Disability, Ageing and Carers (SDAC) conducted by the Australian Bureau of Statistics. Informal assistance is unpaid help or supervision that is provided to persons with one or more disabilities or persons aged 65 years or over. It includes only assistance that is provided because of a person’s disability or because they are older. Informal assistance may be provided by family, friends or neighbours. For the SDAC, any assistance received from family or friends was considered to be informal assistance regardless of whether or not the provider was paid, such as through the Australian Government Carer Payment or other allowances. It does not include providers whose care is privately organised.
Formal assistance is help provided to persons with one or more disabilities by:
•Organisations or individuals representing organisations (whether profit making or non-profit making, government or private); or
•Other persons (excluding family, friends or neighbours as described in Informal assistance), on a regular, paid basis, who are not associated with any organisation.
In the Disability Services National Minimum Data Set collection, a carer is defined as someone, such as a family member, friend or neighbour, who has been identified as providing regular and sustained care and assistance to the person requiring support. ‘Regular’ and ‘sustained’ in this instance means that care or assistance has to be ongoing, or likely to be ongoing for at least 6 months. Excluded from the definition of carers are paid workers or volunteers organised by formal services (including paid staff in funded group homes).
Question 3:
One of the speakers mentioned an outcomes assessment system that is being used extensively in the United States. Where can I find out more about this approach?
Response:
Roger Stancliffe: The U.S. National Core Indicators (NCI) program each year surveys a random sample of users of intellectual and developmental disability services in participating U.S. states. This website contains extensive data about state-by-state and national performance on various outcomes (indicators) such as loneliness, employment, and many, many others. The rich individual data on outcomes, personal characteristics and disability services enable well-controlled and policy-relevant analyses of outcomes. In conjunction with colleagues at the University of Minnesota’s Research and Training Center of Community Living, I have published the findings of a number of secondary analyses of NCI data that tell us how well the U.S. system is serving people with intellectual and developmental disabilities. In the webinar I mentioned one study of choice of living arrangements which showed that more than half of U.S. service users who live outside their family home had no choice of where and with whom to live. Because Australia does not yet collect similar outcomes data, it is not possible to answer these sorts of questions about Australian disability services. For anyone interested in more details about this issue, please see:
Stancliffe, R. J., Lakin, K. C., Larson, S. A., Engler, J., Taub, S., & Fortune, J. (2011).Choice of living arrangements. Journal of Intellectual Disability Research, 55(8), 746-762. doi:
Question 4:
Mark Cooper-Stanbury mentioned during the panel session that the National Disability Insurance Agency (NDIA) is using the ICF framework for both goal setting and outcomes measurement. Could you supply further details please?
Response:
At this stage we do not have further detail from the NDIA. However the following papers discuss the general idea of using the ICF for recording goals and measuring outcomes, and involving the person concerned in both:
World Health Organization. How to use the ICF: A practical manual for using the International Classification of Functioning, Disability and Health (ICF). Exposure draft for comment. October 2013. Geneva: WHO
Madden RH, Fortune N, Cheeseman D, Mpofu E, Bundy A 2013. Fundamental questions before recording or measuring functioning and disability. Disability & Rehabilitation, 2013; 35(13): 1092–1096
Madden R, Ferreira M, Einfeld S, Emerson E, Manga R, Refshauge K, Llewellyn G 2012. New directions in health care and disability: the need for a shared understanding of human functioning. ANZJPH 2012;36;5:458-461.
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