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INTERNATIONAL DEVELOPMENTS IN MEASURING OUTCOMES. Roger J Stancliffe Eric Emerson. Monitoring progress in achieving disability equality: Fulfilling Potential. December . September. September . January . July 2013. 2011. 2012 . 2013. 2012. Actions, . Building. outcomes .

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fulfilling potential

December

September

September

January

July

2013

2011

2012

2013

2012

Actions,

Building

outcomes

understanding

Discussion

Discussions

Next Steps

and

document

So Far

of

indicators

disability

Highlight

Outline

Outline

Draw on

current and

Obtain wide

statistics

strategic

specific

range of

planned

priorities and

actions and

and research

activity and

opinions and

explain how

timelines and

to explore

ideas to inform

publish

specific

how progress

nature of

responses to

new strategy

actions will be

will be

disability in

discussion

developed

monitored

the UK today

document

Co

-

production

Fulfilling Potential
reports
Reports

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

domains indicators
Domains & Indicators
  • 11 domains containing
    • 1 or 2 headline indicators
    • up to 11 supporting indicators
key message 1
Key Message 1
  • Co-production is key to balancing the interests of
    • Government
    • DPOs
    • (People with disabilities)
key message 2
Key Message 2
  • Monitor the inequality gap
    • over time
    • and for ‘at risk’ groups
left behind
Left Behind

Monitoring Changes in the Wellbeing of Young Disabled Australians

  • 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
left behind 2014
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
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

what is going on
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’
research into action
Research into Action
  • Implications
    • Invest in annual data collections that can be used to monitor all key aspects of disability equality
    • Use subjective measures of wellbeing with extreme caution (if at all)
    • Invest in developing supports for survey completion that are independent of service provider agencies
    • Develop alternative ways of capturing the voices of people who use disability services
outline
Outline
  • DescribeNational Core Indicators (NCI)
  • Examples of policy-relevant NCI analyses
    • Choice of Living Arrangements
    • Wellbeing and Choice of Living Arrangements
    • ASD Eligibility Policies
  • How is NCI Data Used by US States?
    • Example from Kentucky
  • Possible Applications in Australia
who participates in the nci
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
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
NCI Indicator Framework

= Adult Consumer Survey

nci participating states 2010 2013
NCI Participating States 2010-2013

NH

ME

WA

MA

OR

NY

WI

SD

RI

MI

PA

NJ

CT

OH

MD

IN

IL

UT

VA

DC

MO

KY

CA

NC

HI

OK

AR

SC

AZ

NM

GA

AL

MS

LA

TX

2010-11 24 States

2011-12 29 States

2012-13 35 States

FL

choice of living arrangements
Choice of Living Arrangements

POLICY IMPLEMENTATION QUESTION

Overall

What percentage of adult service users living outside the family home choose where and with whom they live?

overall nci choice results 2008
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)

conclusion
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 arrangements1
Choice of Living Arrangements

POLICY IMPLEMENTATION QUESTION

Does choice of living arrangements vary by residence type and level of disability?

conclusion1
CONCLUSION
  • People with severe/profound intellectual disability had little or no choice of whom to live with, regardless of residence type.
conclusions
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.
choice of living arrangements2
Choice of Living Arrangements

POLICY IMPLEMENTATION QUESTION

Does exercising choice of living arrangements lead to greater wellbeing? (Stancliffe et al., 2009)

nci wellbeing outcomes
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
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.
results summary
Results Summary

Personal characteristics controlled statistically in all comparisons.

conclusion2
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
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:

x2(2, 12,382)=17.39, p<.001

overview of nci use at state level
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
Kentucky: Example of State Application

Kentucky Health and Wellness Initiative

  • 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)
community based employment
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
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
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
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
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
slide50

Chart Generator

www.nationalcoreindicators.org

overall conclusion
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
Application of the NCI in Australia

NCI items used extensively in 1999 Australian national survey

research into action1
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.
research into action2
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
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.

slide57

Centre for Disability Research and Policywww.sydney.edu.au/health_sciences/cdrp/ Email: disabilitypolicy.centre@sydney.edu.aueric.emerson@sydney.edu.auroger.stancliffe@sydney.edu.au