FACULTY OF HEALTH SCIENCES
CENTRE FOR DISABILITY RESEARCH AND POLICY
INTERNATIONAL DEVELOPMENTS IN MEASURING OUTCOMES
Roger J StancliffeEric Emerson
1
Monitoring progress in achieving disability equality: Fulfilling Potential
September 2012
Discussion document
Discussions So Far
Next Stepsof
disability
Actions, outcomes
and indicators
Obtain wide range of
opinions and ideas to inform new strategy
Highlight current and
planned activity and
publish responses to discussion document
Outline strategic
priorities and explain how
specific actions will be
developed
Draw on statistics
and research to explore nature of
disability in the UK today
Outline specific
actions and timelines and
how progress will be
monitored
Buildingunderstanding
July2013
Co-production
December 2011
September2012
January 2013
FULFILLING POTENTIAL
REPORTS
http://odi.dwp.gov.uk/fulfilling-potential/index.php
DOMAINS & INDICATORS
› 11 domains containing - 1 or 2 headline
indicators - up to 11
supporting indicators
Friends & family
Housing
Information & access
Health & wellbeing
Transport
Social participation
Income
Choice & control
Employment
Education
0 2 4 6 8 10 12 14
Number of Indicators
5
KEY MESSAGE 1
› Co-production is key to balancing the interests of- Government- DPOs- (People with
disabilities)
Better housing
More friends/leisure activities
More choice/independence
Job change/Flexibility
More time with family
More money
Improved health
-20% 0% 20% 40% 60%
ONS Opinions Survey 2013What one thing would make the
biggest different to your quality of life?
KEY MESSAGE 2
› Monitor the inequality gap- over time - and for ‘at risk’ groups
8
LEFT BEHIND
› 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
Monitoring Changes in the Wellbeing of Young Disabled Australians
LEFT BEHIND 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
LEFT BEHIND 2014
2002 2003 2004 2005 2006 2007 2008 2009 2010 2011 20122
20 Risk of Expos-ure to En-
trenched Mul-tiple Disadvant-
age Among of Australian Ad-
olescents and Young Adults:
2001-2012
Capturing the views of service users: England’s Adult Social Care Survey
ADULT SOCIAL CARE SURVEY
› 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
SELECTED RESULTS 1
0%
10%
20%
30%Physical Disability, Frailty and Sensory Impairment Mental Health
Intellectual Disability
SELECTED RESULTS 2
0%
20%
40%
60%
80%2010/11 2011/12 2012/13
WHAT IS GOING ON?
› 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’
SELECTED RESULTS
0%
4%
8%
12%Self-completion Completion supported by careworker9% 56%
RESEARCH INTO ACTION 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
FACULTY OF HEALTH SCIENCES
CENTRE FOR DISABILITY RESEARCH AND POLICY
International developments in measuring outcomes:US National Core Indicators
18
Outline
1. Describe National Core Indicators (NCI)
2. Examples of policy-relevant NCI analyses1. 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
1. National Core Indicators (NCI): Features, development, current use and future expansion
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
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/
› Individual state annual reports available via NCI website
› Deidentified NCI data shared with (selected) university researchers for independent secondary analysis
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
NCI Participating States 2010-2013
2010-11 24 States 2011-12 29 States2012-13 35 States
HI
WA
AZ OK
KY
AL
NC
PA
ME
MA
SD
TX
AR
GANM
NJ
MO
NY
LA
OH
NH
DCCA
FL
IL
OR WI
IN
MI
MS
SC
VAMD
CTRI
UT
2. Examples of policy-relevant analyses using NCI data
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
Overall NCI Choice Results 20086778 adult developmental disabilities service users living in non-family-homeservice settings in 26 US states (Stancliffe et al., 2011)
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.
Choice of Living Arrangements
Does choice of living arrangements vary by residence type and level of disability?
POLICY IMPLEMENTATION QUESTION
Mild Moderate Severe Profound0
20
40
60
80
InstitutionGroup homeApartmentOwn homeFoster careNursing facil-ity
Level of ID
Perc
enta
ge
Choosing Whom to Live With (person chose)by Level of Disability and Residence Type
CONCLUSION
› People with severe/profound intellectual disability had little or no choice of whom to live with, regardless of residence type.
Choosing Whom to Live With (person chose)by Level of Disability and Residence Type
Mild Moderate Severe Profound0
20
40
60
80
Group home
Own home
Level of ID
Perc
enta
ge
Own home
Group home
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.
Wellbeing and Choice of Living Arrangements
Choice of Living Arrangements
Does exercising choice of living arrangements lead to greater wellbeing? (Stancliffe et al., 2009)
POLICY IMPLEMENTATION QUESTION
NCI Wellbeing Outcomes
› Loneliness› Feeling happy
At Home
› Feeling afraid at home› Feeling afraid in your neighborhood› Home staff nice and polite› Liking home
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.
Loneliness the most widespread problem
Lonely Scared Home
Scared N'hood
Happy Staff Home
Like Home
0102030405060708090
100
53.9
79.7 79.2 83.290.6 88.6
Percent with positive outcome
Well-being outcome
% o
f tot
al s
ampl
e
Results Summary
Item Chose Who to Live with
Chose Where to Live
Loneliness Feeling happy Afraid at home
Afraid in neighbourhoodHome staff nice Like home
Personal characteristics controlled statistically in all comparisons.
Conclusion
› Choosing where to live and whom to live with each are associated with: - multiple wellbeing benefits and - no wellbeing detriments.
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 Policies No. of States
% service users with ASD diagnosis
None 6 6.6%Related condition (RC) 14 8.4%RC + autism –specific HCBS 5 9.3%
x2(2, 12,382)=17.39, p<.001
3. How is NCI Data Used by US States?
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
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
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)
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.
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.
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.
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
Chart Generator www.nationalcoreindicators.org
4. Possible Applications in Australia
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.
Application of the NCI in Australia
Issue NCI in USA AustraliaTarget groups ID/DD only All disability types
Level of analysis State Needs discussion
Compliance burden Costs borne by each state.Sampling strategy means limited burden on individual service users and providers.
Needs discussion
Data availability Raw data: State officials, independent researchersSummary 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
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.
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.
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.
Centre for Disability Research and Policywww.sydney.edu.au/health_sciences/cdrp/
Email: [email protected]