Joining the Dots on Disability Services Data: Challenges and Opportunities

416 views
279 views

Published on

Dr Pamela Kinnear, Group Head, Continuing and Specialised Care Group, and Mark Cooper-Stanbury, Head - Disability Information Development Unit athe Australian Institute of Health and Welfare delivered this presentation at the 2013 National Disability Summit in Australia. The annual conference brings together healthcare industry professionals to discuss the future direction of disability policy reform. For more information, please visit the conference website: www.healthcareconferences.com.au/nationaldisabilitysummit

Published in: Health & Medicine, Education
0 Comments
1 Like
Statistics
Notes
  • Be the first to comment

No Downloads
Views
Total views
416
On SlideShare
0
From Embeds
0
Number of Embeds
0
Actions
Shares
0
Downloads
6
Comments
0
Likes
1
Embeds 0
No embeds

No notes for slide

Joining the Dots on Disability Services Data: Challenges and Opportunities

  1. 1. Joining the dots on disability services data: challenges and opportunities Dr Pamela Kinnear Mark Cooper-Stanbury
  2. 2. Outline • Context • Disability services data as we know it – And what we know from it • Challenges and opportunities – Selected issues – Discussion 2
  3. 3. CONTEXT 18/03/2013 3
  4. 4. The work of AIHW • AIHW is the national institute for health, housing and community services data – collection, analysis and reporting – data development (standards and metadata) • Work alongside ABS and other federal agencies (health performance, prevention, safety and quality, workforce) • Work with state and territory health and community services authorities 4
  5. 5. The AIHW Act • Enacted in 1987 • Welfare functions added in 1992 • Statutory authority of the Australian Government • Part of the Health and Ageing portfolio – reports to the Minster for Health 5
  6. 6. Functions under the Act • Collect, produce and coordinate health and welfare-related information and statistics • Develop methods…and relevant specialised statistical standards and classifications • Publish methodological and substantive reports • Subject to section 29, enable researchers to have access to health and welfare-related information and statistics
  7. 7. Policy context • National Disability Agreement – Funding agreement between Australian Government and eight state and territory governments – Amended in July 2012 to incorporate changes implied by National Health Reform Agreement • National Disability Strategy 2010–2020 – Broad policy – Involves all sectors, such as health, education, employment, justice, and community services 7
  8. 8. Policy context (cont.) • National Carer Strategy – Launched in 2011 – Gives effect to the principles of the Carer Recognition Act 2010. – Aims is to respond to the diverse and changing needs of carers with appropriate services and supports • National Disability Insurance Scheme (NDIS) – Announced by the Council of Australian Governments on 25 July 2012 – Based on individualised funding and person-centred care – Launch sites in July 2013 (a pilot of 26,000 people in selected regions) 8
  9. 9. Why do we want to know? • Quantify governments’ response to need for specialist disability services – window on client needs – window on service capacity • Satisfy public expectation of right to know about $billion programs • Enable comparison of jurisdictional programs in a standardised way – AIHW role in standardising data inputs and outputs • Assist evaluation of programs with respect to use, outcomes and costs • [Potentially] provide information to prospective service users on available services and best performing agencies (a la MyHospitals)
  10. 10. A question What are the 2 or 3 most important things you would like to know about disability services in Australia? (Muse on this while you attend to the next few slides, and assess what role the available data may play in giving you the answers.) 10
  11. 11. DISABILITY SERVICES DATA 18/03/2013 11
  12. 12. Complexity and need for integration Now On the horizon > 2,200 specialist agencies in one defined sector, across 9 ‘jurisdictions’ At least as many specialist agencies + an unknown number of registered providers, across three ‘sectors’ > 300,000 clients > ? 500,000 + clients 5–6 funding streams, reasonably straightforward flows 6–8 funding streams, more complex flows Annual reporting; reasonably aggregated data Ongoing reporting; transaction-based data; more parties Fairly simple uses of data More complex uses of data (e.g. individual ‘budget’ tracking; actuarial analysis)
  13. 13. Disability services data • Provides information on specialist disability services • Collection funded by Australian Government and state and territory governments • Partnership between AIHW and Disability Policy and Research Working Group • Latest report released in 2012 with 2010–11 data 13
  14. 14. Key parameters Who • Clients of services provided under NDA • Service providers covered by NDA When • Service transactions day-to-day • Annual cycle of reporting What • Services provided • Services received • [Estimate of] unmet need Where • Service outlets (= specific type of service from a service provider in a specific location) Why • Performance reporting under COAG agreements • General public accountability How • National Minimum Data Set • AIHW Act to protect personal information • [Opportunity for] data integration service
  15. 15. Gist of the NMDS 15
  16. 16. Service users Services received Service type outlets Demographics (sex, DOB, Indigenous status, postcode, interpreter services required, communication method living arrangements, residential setting, primary disability, other disabilities) Service dates: • start date • last and exit dates • main reason of cessation of services • • • • Support needs information (9 life areas) Hours of service received (reference and typical week) Hours, days and weeks of operation service type geographic location agency sector funding jurisdiction Informal carer information (existence, status, relationship, age) Staff hours (paid, unpaid, reference week, typical week) Main source of income, receipt of carer allowance (child), individualised funding status, labour force status Number of service users 16
  17. 17. Who provides disability services? • Data usually collected by 2,238 agencies operating under the National Disability Agreement • Agencies manage 13,833 service type outlets • Agencies funded by: – Australian Government 28% – State/territory governments 72% • Majority (82%) of service providers were in the nongovernment sector – majority of these (86%) were income tax exempt charities 17
  18. 18. What services are provided? Community support Employment Community access Accommodation support Respite 0 10 20 30 Per cent 40 50 18
  19. 19. Who uses disability services? • 314,300 people, accessing 528,100 ‘services’ – Average of 1.7 services each • • • • Median age 33 59% men 6% Aboriginal or Torres Strait Islander people 63% lived in major cities 19
  20. 20. Who uses disability services (cont)? • Main primary disability: - 30% intellectual - 20% psychiatric - 17% physical • 44% had an informal carer 20
  21. 21. What types of assistance are needed? Always need help Sometimes need help Community life Learning Interpersonal Education Communication Working Self-care Domestic life Mobility 0% 20% 40% 60% 80%
  22. 22. Changes over time • Since 2009–10: - 7% increase in number of service users • Since 2005–06: - 45% increase in number of service users - 75% increase in employment services - 108% increase in number of service users without an informal carer 22
  23. 23. Cost of services: $6.2 billion Respite Other Administration Accommodation support Community access Employment Community support 23
  24. 24. What is the end product?
  25. 25. What is the end product?
  26. 26. What is the end product?
  27. 27. Services data redevelopment • Current services collection been operating with little change for several years • Concerns that it is not providing the data necessary to – support the National Disability Strategy – support a National Disability Insurance Scheme • A redevelopment plan started in 2011 27
  28. 28. Services data redevelopment (cont.) • First stage is ‘disability data dictionary’: definitions and data standards to support a revised collection – cover some new content – provide formal metadata for existing collection – pave the way for a new collection • Some thinking about a revised data architecture 28
  29. 29. Current ‘architecture’ 29
  30. 30. Goal ‘architecture’ 30
  31. 31. Goal ‘architecture’ 31
  32. 32. CHALLENGES AND OPPORTUNITIES 18/03/2013 32
  33. 33. Challenges—outline • No universal identifier in data systems • Gaps in services and survey data • Complexity of data with NDIS roll-out 33
  34. 34. No universal identifier in data systems • But widespread use of SLK 581 statistical linkage key • enables AIHW to stitch together episodes for same SLK across agencies and across years – way of counting people and not episodes • not perfect, for example, by looking for new SLKs each year we estimated 80,000 new users in the DS NMDS 34
  35. 35. Gaps in services data • Outcomes – Functioning and health – Client/carer experience with services • Cultural and language diversity • Carer arrangements 35
  36. 36. NDIS complexity • Scheme participants – Support plan – Individual budget • NDIS data system largely transactional • Big advantage will be a centralised client record • Challenge (and opportunity) is extracting data for statistical uses, and lining these data up with other data 36
  37. 37. Challenge with joining up the data 37
  38. 38. FEEDBACK AND DISCUSSION 18/03/2013 38
  39. 39. Questions for table discussion • What are the 2 or 3 most important things you would like to know about disability services in Australia? • What is your top recommendation for ‘joining the dots’ to obtain that information? 39
  40. 40. Feedback and general discussion 40
  41. 41. Contacts Dr Pamela Kinnear pamela.kinnear@aihw.gov.au Ph 02 6249 5096 Mark Cooper-Stanbury mark.cooper-stanbury@aihw.gov.au Ph 02 6244 1251 Liz Clout elizabeth.clout@aihw.gov.au Ph 02 6244 1208 41
  42. 42. www.aihw.gov.au 42

×