1. FACULTY OF HEALTH SCIENCES CENTRE FOR DISABILITY RESEARCH AND POLICY INTERNATIONAL DEVELOPMENTS IN MEASURING OUTCOMES Roger J Stancliffe Eric Emerson 1

2. Monitoring progress in achieving disability equality: Fulfilling Potential

3. F ULFILLING P OTENTIAL

4. R EPORTS http://odi.dwp.gov.uk/fulfilling-potential/index.php

5. D OMAINS & I NDICATORS ›11 domains containing -1 or 2 headline indicators -up to 11 supporting indicators 5

6. K EY M ESSAGE 1 ›Co-production is key to balancing the interests of -Government -DPOs -(People with disabilities)

7. K EY M ESSAGE 2 ›Monitor the inequality gap -over time -and for ‘at risk’ groups

8. L EFT B EHIND ›Framework -v1 (2009) UN Convention on the Rights of Persons with Disabilities -v2 (2011 onwards) Australia’s Social Inclusion Indicators Framework ›Data -Annual survey of Household Income & Labour Dynamics in Australia (HILDA) -Indicators matched to 44% of Framework indicators 8 Monitoring Changes in the Wellbeing of Young Disabled Australians

9. L EFT B EHIND 2014 ›Between 2001 and 2012, the gap between young Australians with disabilities and their non-disabled peers has grown in 11 (of 22) areas including -Not being employed -Being long-term unemployed -Having low economic resources and financial stress -Having low subjective well-being -Not having someone to turn to in times of crisis -Not having a voice in the community -Experiencing entrenched multiple disadvantage. ›It has not narrowed in any area at all

10. L EFT B EHIND 2014 10

11. Capturing the views of service users: England’s Adult Social Care Survey

12. A DULT S OCIAL C ARE S URVEY ›Annual survey (began 2010/11) ›How effectively are services helping users to live safely and independently? What is impact of services on their quality of life? ›Cross-sectional stratified random sample from every Council with Adult Social Services Responsibilities (CASSR, n=154) ›2012/13 sample > 50,000 ›Service users aged 18 and over in receipt of services funded wholly or in part by Social Services ›Questions about -Subjective wellbeing -Social relationships -Leisure activities -Safety -Food quality -And more …………………. http://www.hscic.gov.uk/article/2215/User-Experience-Survey-Adult-Social-Care- Guidance-2012-13

13. S ELECTED R ESULTS 1

14. S ELECTED R ESULTS 2

15. W HAT I S G OING O N ? ›The data are valid, English disability services (especially for people with intellectual disability) are excellent and getting better ›People with intellectual disability have low expectations ›Supported responding introduces significant positive bias ‘Concentrating on mental characteristics (such as pleasure, happiness or desires) can be particularly restrictive when making interpersonal comparisons of well-being and deprivation. Our desires and pleasure- taking abilities adjust to circumstances …. deprived people tend to come to terms with their deprivation … [as such] ….. the deprivation of the persistently deprived may look muffled and muted’

16. S ELECTED R ESULTS 9%56%

17. R ESEARCH INTO A CTION Implications 1.Invest in annual data collections that can be used to monitor all key aspects of disability equality 2.Use subjective measures of wellbeing with extreme caution (if at all) 3.Invest in developing supports for survey completion that are independent of service provider agencies 4.Develop alternative ways of capturing the voices of people who use disability services

18. FACULTY OF HEALTH SCIENCES CENTRE FOR DISABILITY RESEARCH AND POLICY International developments in measuring outcomes: US National Core Indicators 18

19. Outline 1.Describe National Core Indicators (NCI) 2.Examples of policy-relevant NCI analyses 1.Choice of Living Arrangements 2.Wellbeing and Choice of Living Arrangements 3.ASD Eligibility Policies 3.How is NCI Data Used by US States? 1.Example from Kentucky 4.Possible Applications in Australia

20. 1. National Core Indicators (NCI): Features, development, current use and future expansion

21. Who participates in the NCI? ›Annual survey on a random sample of service users (400+ per state) -Longitudinal (multi-year) data on specific individuals not available by design (to avoid survey fatigue) ›States opt in -Some states add questions to the standard NCI instrument to investigate issues of specific local policy interest -Some states focus on different parts of their service system in different years by oversampling different subgroups ›Used only by the intellectual disability and developmental disability (ID/DD) service system in each participating state

22. Who has access to NCI data? ›Benchmarking: For each indicator the NCI provides for: - state-by-state comparisons, -comparisons with the national average, -year-by-year comparisons within states ›Summary data publicly available via the NCI website http://www.nationalcoreindicators.org/ http://www.nationalcoreindicators.org/ ›Individual state annual reports available via NCI website ›Deidentified NCI data shared with (selected) university researchers for independent secondary analysis

23. NCI Indicator Framework Individual Outcomes Employment Choice & Control Relationships Community Inclusion Family Indicators Information & Planning Access to Supports Community Connections Choice & Control Health, Welfare, & Rights Health & Wellness Safety Respect & Rights System Performance Service Coordination Incidents & Mortality Staff Turnover = Adult Consumer Survey

24. NCI Participating States 2010-2013 2010-11 24 States 2011-12 29 States 2012-13 35 States HI WA AZ OK KY AL NC PA ME MA SD TX AR GA NM NJ MO NY LA OH NH DC CA FL IL OR WI IN MI MS SC VA MD CT RI UT

25. 2. Examples of policy-relevant analyses using NCI data

26. Choice of Living Arrangements Overall What percentage of adult service users living outside the family home choose where and with whom they live? POLICY IMPLEMENTATION QUESTION

27. Overall NCI Choice Results 2008 6778 adult developmental disabilities service users living in non-family-home service settings in 26 US states (Stancliffe et al., 2011)

28. CONCLUSION ›Most people have no choice of where to live (55%) or whom to live with (59%). ›Policies endorsing choice of living arrangements are not being implemented satisfactorily.

29. Choice of Living Arrangements Does choice of living arrangements vary by residence type and level of disability? POLICY IMPLEMENTATION QUESTION

30. Choosing Whom to Live With (person chose) by Level of Disability and Residence Type

31. CONCLUSION ›People with severe/profound intellectual disability had little or no choice of whom to live with, regardless of residence type.

32. Choosing Whom to Live With (person chose) by Level of Disability and Residence Type

33. CONCLUSIONS ›For people with mild and moderate intellectual disability, choice of living companions varies dramatically by residence type: -own home (73.5% and 57.3% chose) -group home (9.5% and 9.7% chose) ›These findings support policies promoting individualised settings, such as one’s own home or an agency apartment. -These settings do provide substantially more choice about living arrangements, as intended.

34. Wellbeing and Choice of Living Arrangements

35. Choice of Living Arrangements Does exercising choice of living arrangements lead to greater wellbeing? (Stancliffe et al., 2009) POLICY IMPLEMENTATION QUESTION

36. NCI Wellbeing Outcomes ›Loneliness ›Feeling happy At Home ›Feeling afraid at home ›Feeling afraid in your neighborhood ›Home staff nice and polite ›Liking home

37. Self-Report Data Only ›Well-being items come from Section I of the NCI Consumer Survey, which may only be completed by interviewing the person receiving services. Due to communication difficulties, some service users could not take part in the interview. ›Only included participants who were judged by interviewers to have given valid and consistent interview responses. ›These selection criteria yielded predominantly people with mild or moderate ID.

38. Loneliness the most widespread problem

39. Results Summary ItemChose Who to Live with Chose Where to Live Loneliness  Feeling happy  Afraid at home Afraid in neighbourhood Home staff nice  Like home  Personal characteristics controlled statistically in all comparisons.

40. Conclusion ›Choosing where to live and whom to live with each are associated with: -multiple wellbeing benefits and -no wellbeing detriments.

41. Policy Analyses and Outcomes: ASD Eligibility Policies ›Grouping states by common policies to evaluate the impact of these polices on service provision and client outcomes. EXAMPLE ›Hewitt et al. (2011) compared the proportion of state ID/DD service users with and autism/ASD diagnosis by state autism/ASD service eligibility policies: ASD Eligibility PoliciesNo. of States % service users with ASD diagnosis None66.6% Related condition (RC)148.4% RC + autism –specific HCBS59.3% x 2 (2, 12,382)=17.39, p<.001

42. 3. How is NCI Data Used by US States?

43. Overview of NCI Use at State Level › Overall quality management - Set priorities for quality improvement - Report evidence to federal funders › Report results to stakeholders - Internal state staff - Quality councils/review committees - State legislatures - Providers - Individuals and families receiving services

44. Kentucky: Example of State Application ›Quality Improvement Committee (QIC) convened in 2012 -Identified health and exercise as target area -Initiative funded 8 pilot programs promoting inclusive physical fitness and healthy eating activities ›See Moseley, Kleinert, Sheppard-Jones & Hall (2013) Kentucky Health and Wellness Initiative

45. Community-based Employment ›7% of respondents from Kentucky and 14% of respondents across NCI States were reported to be working in community- based employment (settings where most people do not have disabilities)

46. Recommendation: Increasing integrated community employment Changes included: ›Large increase in hourly funding rate to providers of integrated supported employment. ›Small decrease (11%) in hourly funding rate to providers of day activity services.

47. Friendship and Loneliness ›72% of respondents from Kentucky and 40% of respondents across NCI States reported they feel lonely at least half of the time.

48. Recommendations: Loneliness and friendships. Changes included: ›Increased hourly funding rate for all integrated services and decreased rates for all segregated services. ›Launched a ‘‘Community Belonging’’ initiative, starting with 10 agencies, to ensure that people are connected to their communities via unpaid relationships.

49. Expanding Public Use of NCI Data Researchers using NCI Data -Research policy and process for requesting data and/or tools -Formal process through NASDDDS Research Committee -Several university researchers and students approved and currently working with data (autism, ageing, health – e.g., University of Minnesota) Public use of NCI Data ›New website with chart generator feature – customisable summary data publicly available

50. Chart Generator www.nationalcoreindicators.org

51. 4. Possible Applications in Australia

52. OVERALL CONCLUSION ›Regular assessment of outcomes experienced by people with disability facilitates evaluation of: -Benefits to service users -Benefits of different service types -Benefits to service users with different characteristics -Policy implementation and effects -Relative disadvantage compared to the general community (subject to availability of comparison data). ›Countries that do not currently have a national system for assessing outcomes should examine the NCI for its local applicability.

53. Application of the NCI in Australia IssueNCI in USAAustralia Target groupsID/DD onlyAll disability types Level of analysisStateNeeds discussion Compliance burdenCosts borne by each state. Sampling strategy means limited burden on individual service users and providers. Needs discussion Data availabilityRaw data: State officials, independent researchers Summary data: Public Needs discussion Process for identifying indicators Consensus among participating states and organisations. Needs discussion NCI items used extensively in 1999 Australian national survey

54. Research into Action Implications and actions for policy makers Building on international examples, develop, field test, implement and refine an Australian national system of outcomes monitoring for disability service users. Gather (some) outcomes data directly from disability service users. Use the outcomes data to evaluate and improve the effectiveness of disability services, funding and policy. Make deidentified data publicly available. Create a body, with relevant expertise, to manage the outcomes monitoring process.

55. Research into Action Implications and actions for practice Develop a consumer outcomes focus when delivering and managing disability services. Use outcomes data to evaluate and improve the effectiveness of disability services and policy. Educate stakeholders about outcomes and outcomes data.

56. References Bradley, V. J. & Moseley, C. (2007). Perspectives: National Core Indicators: Ten years of collaborative performance measurement. Intellectual and Developmental Disabilities, 45(5), 354-358. Hewitt, A. S., Stancliffe, R. J., Johnson Sirek, A., Hall-Lande, J., Taub, S., Engler, J., Bershadsky, J., Fortune, J., & Moseley, C. (2011). Characteristics of adults with autism spectrum disorder who use adult developmental disability services: Results from 25 US states. Research in Autism Spectrum Disorders, 6(2), 741-751. Moseley, C., Kleinert, H., Sheppard-Jones, K., & Hall, S. (2013). Using research evidence to inform public policy decisions. Intellectual and Developmental Disabilities, 51(5), 412-422. doi: 10.1352/1934-9556-51.5.412 Sheppard-Jones, K., Hall, S., & Kleinert, H. (2011). Using large-scale data sets to inform state DD policy. Community Services Reporter, 18(9), 4–10. Sheppard-Jones, K., Prout, H., & Kleinert, H. (2005). Quality of life dimensions for adults with developmental disabilities: A comparative study. Mental Retardation, 43, 281-291. 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. Stancliffe, R. J., Lakin, K. C., Taub, S., Chiri, G., & Byun, S. (2009). Satisfaction and sense of well-being among Medicaid ICF/MR and HCBS recipients in six states. Intellectual and Developmental Disabilities, 47(2), 63-83.

57. Centre for Disability Research and Policy www.sydney.edu.au/health_sciences/cdrp/ Email: disabilitypolicy.centre@sydney.edu.au eric.emerson@sydney.edu.au roger.stancliffe@sydney.edu.au www.sydney.edu.au/health_sciences/cdrp/disabilitypolicy.centre@sydney.edu.au eric.emerson@sydney.edu.au roger.stancliffe@sydney.edu.au