european social network conference july 2015 the national disability insurance scheme: building and...
TRANSCRIPT
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European Social Network Conference
July 2015
The National Disability Insurance Scheme: building and managing a world-leading scheme for all Australians
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Background to the NDIS
The NDIS Outcomes Framework
Pilot study results summary
Workshop outline
Breakout groups
Background:The National Disability Insurance SchemeThe need for an Outcomes Framework
The National Disability Insurance Scheme (NDIS)
• Became fully operational on 1 July 2013 with the commencement of trial sites across Australia
• Represents a fundamentally new approach to supporting Australians with disability– Shifts the existing welfare system to an
insurance-based model– Promotes choice and control, early
intervention, and community inclusion
The need for an outcomes frameworkLegislation: NDIS Act 2013
• Section 3 lists the objects of the Act, such as supporting the independence and social and economic participation of people with disability, and refers to Australia’s obligations under some other instruments, including the UN Convention on the Rights of Persons with Disabilities (CRPD)
• Section 4 sets out 17 general principles guiding actions under the Act. For example, the first principle is: “People with disability have the same right as other members of Australian society to realise their potential for physical, social, emotional and intellectual development”
The need for an outcomes frameworkNDIA Strategic Plan
People with disability are in control and have choices, based on the UN Convention on the Rights of Persons with Disabilities.
The National Disability Insurance Scheme is financially sustainable and is governed using insurance principles.
The community has ownership, confidence and pride in the National Disability Insurance Scheme and the National Disability Insurance Agency.
Goals
The need for an outcomes frameworkOther policy documents
• Intergovernmental agreement– Performance Reporting Framework
• National Disability Strategy: six broad outcome areas– Inclusive and accessible communities, Rights protection, justice and legislation,
Economic security, Personal and community support, Learning and skills, Health and wellbeing
• National Standards for Disability Services: six standards– Rights, Participation and inclusion, Individual outcomes, Feedback and
complaints, Service access, Services management
The need for an outcomes frameworkMonitoring progress
• Tracking progress of individual participants and families/carers over time– are things improving for our participants?
• Linking outcomes to supports received, other risk factors, and participant characteristics– what types of supports lead to good outcomes?
• Benchmarking– how do we compare to Australians without disability, and to other
OECD countries?
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Developing the NDIS Outcomes Framework
Developing the NDIS Outcomes Framework Guiding Principles
• Two ways of measuring progress– The distance from “an ordinary life”– Progress towards an individual’s own goals
• Indicators must be– Meaningful: widely accepted as important measures of progress– Informative: able to indicate what is working to improve
outcomes and what is not– Feasible to collect and report: avoid over-surveying participants
and undue burden on staff
Developing the NDIS Outcomes Framework
Review existing frameworks,Review ABS & other surveys
Outcomes framework: domains, questions,
indicators
Consultation, feedback
Special cohorts
Piloting
Review of existing frameworks
US: National Core Indicators (NCI), The Council on Quality and Leadership Personal Outcome Measures (CQL POM)
UK: Fulfilling Potential, Life Opportunities Survey, Adult Social Care Outcomes Framework, Personally Controlled Budgets
Republic of Ireland: National Disability Survey, The Intellectual Disability Supplement to the Irish Longitudinal
Study of Ageing (TILDA)Canada: The University of Toronto Quality of Life Profile (QLP)
NZ: Ministry of Social Development “Investing in Services for Outcomes”
Australia: Transport Accident Commission, National Disability Services
Population information
• Australian Bureau of Statistics (ABS) Surveys– Survey of Disability, Ageing and Carers (SDAC) 2012– General Social Survey (GSS) 2010– Survey of Mental Health and Wellbeing (SMHWB) 2007– Personal Safety Survey (PSS) 2012– 2011-13 Australian Health Survey (AHS)
• Other– Household, Income and Labour Dynamics in Australia (HILDA) Survey– Longitudinal Study of Australian Children– Longitudinal Study of Indigenous Children– Australian Social Inclusion Board (2012) report: Social Inclusion in Australia: How
Australia is faring
The NDIS Outcomes Framework: Lifespan approach
• Independent Advisory Council (IAC) report: Reasonable and necessary support across the lifespan
• The lifespan approach recognises that participants, their families and carers have the potential to grow and develop at any stage of life
• The lifespan approach guides the NDIS to enable each participant to positively experience the key features of a life stage that their peers without disability take for granted
• Reasonable and necessary support by age group is the support required for participants to meet the same milestones and achieve the same goals and aspirations as their peers without disability
Outcomes across the lifespan
Children from birth to school entry
Children from school entry to age 15
Young people aged 16 to 24
Adults aged 25 to 55
Older adults aged over 55
Twelve questionnaire versions
Participant: Birth to school entry
Participant: school entry to age 15
Participant: 16 to 24Standard & Easy English/pictorial
Participant: 25 to 55Standard & Easy English/pictorial
Participant: over 55Standard & Easy English/pictorial
Family: participant aged 0 to 15
Family: participant aged 16 to 24
Family: participant aged over 55 (residing & not
residing with participant)
1.Choice and control
2.Daily activities
3.Relationships
4.Home
5.Health and wellbeing
6.Lifelong learning
7.Work
8.Social, community and civic participation
Adults (16 and over): Participant Domains
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AdultsThe adult frameworks consist of eight participant domains and five family domains.The family domains are:
1. Families have the support they need to care
2. Families know their rights and advocate effectively for their family member with disability
3. Families are able to gain access to desired services, programs, and activities in their community
4. Families have succession plans
5. Parents enjoy health and wellbeing
1. Families have the support they need to care
2. Families know their rights and advocate effectively for their family member with disability
3. Families are able to gain access to desired services, programs, and activities in their community
4. Families have succession plans5. Parents enjoy health and
wellbeing
Adults (25 and over): Family Domains
Other information collected
• We also collect general demographic and other information about participants, such as information about work, study, sources of income
• These data will be used in conjunction with the information collected as part of the outcomes framework
Piloting the NDIS Outcomes Framework
Pilot study
• Piloting was undertaken in the Barwon, Hunter and Tasmanian trial sites
• Design: stratified on questionnaire type (except Tasmania) (effective stratification on age and whether participant had an intellectual disability)
• Almost 400 interviews were conducted (both participants and family members/carers), either face-to-face or by phone
• Interviews took place January to March 2015
Pilot study results
• Results from the pilot study are currently being analysed• In this workshop we focus on results for
– Participants aged 25 to 55 (43 interviews)– Family members/carers where the participant is aged 25 and
over (68 interviews)
• High level findings are summarised in the next few slides• Summaries showing the distribution of responses to
each question have been circulated• Feedback on questions is being sought from the
breakout group discussions: each group will be allocated different domain(s)
Results: participants aged 25 to 55
Characteristics 43 respondents, 67% from Hunter, 33% from Barwon 63% female, 37% male
Results: participants aged 25 to 55
• Domain 1, Choice and control: results vary by disability type
1Mean total score for Q1 to 5, coding “Yes I choose” as 1, “Sometimes I have a say” as 0, and “No, someone else chooses” as -1 and adding across Q1 to 5. Scores range from -5 (least choice) to +5 (most choice).
A higher proportion of participants in the first two disability groups want more choice and control compared to the third group (55% versus 27%, but the difference is not significant at 5%)
Group Primary disability Number Mean score1
1 Intellectual, Down syndrome, autism 16 1.8
2 Cerebral palsy, other neurological 16 3.2
3 MS, sensory, other physical, mental health 11 4.2
Results: participants aged 25 to 55
Domain 2, Daily living activities• The most common area of need was domestic tasks (84%),
followed by problem solving (62%) and travel and transport (55%). For other areas the percentages ranged between 39% and 43%
• The highest % of unmet need was for “finances or money” (79% of those who required support received it, and for 82% of these the support met their needs)
• Most participants needed support in multiple areas, with the mean number of support areas being 4.4. Again there is a difference by disability type, with participants in group 1 needing support in the most areas and those in group 3 the least (mean number of areas 5.4, 4.3, and 3.0 for groups 1, 2 and 3 respectively)
Results: participants aged 25 to 55
Domain 3, Relationships• Most participants had someone to call on for practical or emotional
assistance, or in a crisis. The proportion without anyone to call on was highest for emotional assistance (26%). This proportion differed by disability group, being 25%, 44% and 0% for groups 1, 2 and 3 respectively.
Domain 4, Home• 93% of participants were happy with their home, and 86% thought it
would be suitable in 5 years’ time. Two of the three participants not currently happy with their home, and three of the four who thought it wouldn’t be suitable in 5 years’ time had cerebral palsy or another neurological disability.
Results: participants aged 25 to 55
Domain 5, Health and wellbeing• 59% of participants answering the standard version rated their
health as good, very good or excellent. By disability group, this percentage was 83%, 50% and 55% for groups 1, 2 and 3 respectively.
• 50% of participants felt mostly satisfied or pleased about their life. This was 67%, 42% and 50% for disability groups 1, 2 and 3 respectively.
• 24% had some difficulty accessing health services. This was 17%, 33% and 20% for disability groups 1, 2 and 3 respectively. Difficulty was mostly due to access issues.
Results: participants aged 25 to 55Domain 6, Lifelong learning• 12% of respondents said they did not get the opportunity to learn new
things but would like to. Four of these five participants were from disability group 3.
Domain 7, Work• 35% of respondents had a paid job (27%, 33% and 50% in disability
groups 1, 2 and 3 respectively). Of the participants without a job, 70% didn’t want one and 30% (6 participants, 2 in each of the three disability groups) wanted one.
Domain 8, Social, community and civic participation• 54% of respondents were unable to do something they wanted to do in
the last 12 months (31%, 73% and 60% in disability groups 1, 2 and 3 respectively).
• 32% of respondents had had negative experiences in their community in the last year (31%, 40% and 20% in disability groups 1, 2 and 3 respectively).
“Has the NDIS helped?” question by participant domain
Highest ranked: domain 1 (choice and control), 2 (daily living activities) and 5 (health and wellbeing – surprising?)
Lowest ranked: domain 7 (work), 4 (home) and 6 (lifelong learning)
Results: family/carers of participants aged over 25
68 interviews, relationship to participant: 40% mother, 38% spouse, partner or fiancé, 15% sister, sister-
in-law or daughter
Characteristics (of participant) 60% from Hunter, 51% female
Results: family/carers of participants aged over 25
Domain 1, Families have the support they need to care• 32 of 65 respondents (49%) answered positively to all of the first 4
questions (about networks of support), but 7 answered negatively to all 4 questions. There was no apparent difference by participant disability type.
Domain 2, Families know their rights and advocate effectively for their family member with disability• 35 of 65 respondents (54%) answered positively to all of the first 3
questions (about knowing how to access services, understanding rights, and being able to advocate). Again there was no apparent difference by participant disability type.
Results: family/carers of participants aged over 25
Domain 3, Families are able to gain access to desired services, programs and activities in their community• 27 of 63 respondents (43%) answered positively to all of the first 5
questions (about working with and selecting services, and how effective they are). A composite score for this domain, ranging from (-5,+5), showed a slight difference by participant disability type, being marginally better for disability group 1 compared to groups 2 and 3 (3.4 versus 2.1).
Domain 4, Families have succession plans• 22 of the 66 family members/carers who responded had made
succession plans or had begun to make them. The likelihood that a family had made or had started to make plans did not seem to depend on the participant’s age, but was lower for families of participants with a disability from group 3 (6% versus 40% for the other two groups)
Results: family/carers of participants aged over 25
Domain 5, Families enjoy health and wellbeing• 81% of family members rated their health as good, very good or
excellent. This compares with 59% for participants.• 58% felt mostly satisfied or more positive about their life, compared
with 50% for participants.• 71% agreed or strongly agreed that they felt more confident about
their family member’s future under the NDIS. There was a slight increasing trend in this proportion with time since first plan approval, being 63% for plans approved <180 days ago, 69% for those approved between 181-360 days ago, and 80% for plans approved >360 days ago.
• 34% of family members said they would like to work more. The most common reason given for not working more was the situation of the family member with disability.
“Has the NDIS helped?” question by family domain
Highest ranked: domain 1 (support to care), 3 (access to services, programs and activities) and 5 (health and wellbeing)
Lowest ranked: domain 4 (succession planning) and 2 (rights and advocacy)
Breakout groups: questions for discussion
• Are the questions useful? Are there any redundancies or other problems?
• Are there any additional questions that might be important?
• Paying for outcomes (rather than outputs): suggestions for good questions to include in outcomes framework? Are any of the existing questions useful?
• Ways of genuinely engaging participants and ensuring they have a voice
• Collection methodology: e.g. census/sample, means of interview, timing and frequency of collection
