Disability data: looking back, looking forward

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Disability data looking back, looking forward

• Ros Madden, Tim Beard, Xingyan Wen

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Today three themes and

• Whats it all about?
• Some of the big questions and whether we can
  answer them
• What difference does it make?
• Policy relevance of data
• Whats it really all about?
• Definitions, meaning, clarity - and data
  development

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a national focus, 3 recent periods

• 1993 First national overview, AIHW biennial
  report Australias Welfare
• 1995-2004 data highlights
• Definitions and data development
• Many new analyses
• 2005 and beyond
• Long term efforts producing new data
• New challenges

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1993 First national overview, AIHW biennial
report Australias Welfare

• Recent history
• IYDP 1981
• Disability Services Act 1986, HACC Act 1985
• First CSDA 1991
• Disability Discrimination Act 1992
• Statistical information
• Seen as inadequate, and unrelated, with varying
  definitions
• But there were some data, under-utilised

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Overview of published data 1993

• People with a disability 1988
• 15.7 of the population
• 4.0 of population with severe handicap
  (326,800 under 65)
• 290,341 people on Disability Support Pension 1992
• 932 million expenditure on disability services
  in 1989-90 (CSDA being negotiated)

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The future in 1993

• Consistent definitions and meaning
• Concepts more stable than administrative
  terminology and eligibility criteria?
• Critical role of consumers in concepts and
  definitions
• Meeting the demand for better data
• Major committees ask for more consistent data,
  able to be used across service programs
• Accountability who receives services (who not),
  at what costs, with what effect
• New data development CSDA MDS (no national data
  on disability services)
• Public inquiries little knowledge or use of ABS
  data

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1994-2004 data highlights

• Definition of disability and prevalence estimates
• Disability, its dimensions and the role of
  environment
• Disability, age and ageing
• Disability trends
• Trends in DSP
• Families and informal care and trends
• Services and formal care and their adequacy

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ICF Interaction of Concepts
Health Condition (disorder/disease)
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Disability in Australia, 2003
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Estimates of main disability groups in Australia,
1998 (all ages)
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Environment and equipment 1998

• 48 of people with a disability used some form of
  aid 40 of these under the age of 65 years
• Use of equipment more likely in
• older age groups and
• those with more restrictions
• those with physical disabilities
• Communication 43 of people needing assistance
  used neither aids nor personal help

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Age specific rates of severe or profound core
activity limitations, 1998
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People with disability, aged 45-64, age at onset
(), 1998
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Disability trends

• Reported rates of severe disability in
  Australia stable, 1981 to 1993.
• Increases in rates from 1993 to 1998 attributed
  to
• changes in the survey methodology, questions
• population ageing
• 2003 ABS disability survey maintained 1998
  methods, results confirm previous, stable rates.
• Age standardised (adjusted) rates for severe
  disability were 6.4 in 1998 and 6.3 in 2003
• Conclude No change in severe disability rates
  1981 to 2003

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De-institutionalisation and carers
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Providers of assistance for people with
disabilities

• Most people are assisted by informal, co-resident
  carers (generally family)
• In 1998 450,900 people were primary carers
• In 1998 there were 96,700 carers aged 65,
  including 9,000 parents
• 161,300 carers were providing care more than 40
  hours per week
• 22,700 had been caring for 25 years or more

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Disability support services

• Commonwealth State/Territory Disability Agreement
  (CSTDA)
• Many different service types including
  accommodation, employment, respite community
  access and community support
• 2.98 billion in 2002-03, nationally

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Trends in type of CSTDA accommodation service
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Main findings from CSTDA NMDS 2002-03 data

• 156,000 service users accessing services from
  over 10,000 outlets nationally (first 6 months of
  2003)
• 59 were males
• 3.2 identified as Aboriginal or Torres Strait
  Islander
• 44 reported intellectual as primary disability
  next most common physical (14)
• 44 with an informal carer

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Percentage of CSTDA service users with informal
carers, 1 January- 30 June 2003
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Individualised funding by CSTDA service group, 1
January-30 June 2003
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Unmet needs conservative estimates published in
1995, 1997, 2001

• In 1993 13,500 people with unmet need for
  accommodation support and respite services (64
  of service provision)
• In 1996
• 13,400 people with unmet demand for accommodation
  support and respite services
• 12,000 people with unmet demand for day programs
• In 2001
• 12,500 people needing accommodation and support
  services
• 8,200 paces for community access services
• 5,400 people needing employment support
• Putting population and services data together ie
  consistency crucial

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Disability Support Pension

• 1993 406,500 recipients
• 2004 almost 700,000 recipients
• 7.5 billion
• Inflows more influential than outflows?
• Changes to criteria in early 1990s
• Labour market conditions and long term prospects

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Disability support pension recipients,
age-adjusted rates, 19892004
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Activities Participation (ICF) better coverage
needed

• Learning and applying knowledge
• General tasks and demands
• Communication
• Mobility
• Self-care
• Domestic life
• Interpersonal interactions and relationships
• Major life areas
• Community, social and civic life

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2005 and beyond new data

• New data
• Indigenous disability August 2005
• CSTDA data August 2005
• Australias Welfare November 2005 first updates
• More updates of major analyses 1994-2004
• Census question on disability 2006

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2005 and beyond new data challenges...

• Environment and equipment
• Disability, science and ethics
• Enabling environments and universal design
• Population issues
• Disability and ageing
• Indigenous disability
• Childhood disability

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...2005 and beyond new data challenges

• Services, assistance and contexts
• Family carers support and retirement
• Generic services, whole of government
  approaches and transitions
• Insurance, and who pays for disability
• Purchaser-provider relationships
• Service models individualised, flexible,
  evolving
• Assessment and case based funding
• Outcomes
• Unmet need

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Meeting the challenge remembering what its
really all about

• People as participants in society
• Society as the environment for peoples lives
• Generic data including health and aged care
• The use of international and national standards
  in data collections helps compile meaningful data
  across sectors and collections
• ICF a coherent framework consistent with
  rights-based policies that emphasise
  participation of people with disabilities
• Balancing terminology, definitions and data
• Terminology, services and the ABS survey life
  imitating art population indicators,
  eligibility criteria or definitions?

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Thank youMore information?

• www.aihw.gov.au