Co-design of the ILC Commissioning Framework – Summary Report December 2015 Table of contents Background 3 Participation 5 Priority areas of investment 6 Outcomes for ILC and Measures of Success 9 How should ILC measure individual and community outcomes? 11 Risks and concerns 12 Further information 14 Lessons learnt 14 Page 2 Background All governments around Australia agreed to a policy framework for Information, Linkages and Capacity Building (ILC) in July 2015. The ILC Policy Framework identified five activity streams for ILC: Information, Linkages and Referrals Capacity Building for Mainstream Services Community awareness and capacity building Individual capacity building and Local Area Coordination (which will also deliver streams 1-4). The ILC Policy Framework provided only general guidance on how ILC might be put into practice. It provided descriptions of the type of activities that might be conducted but did not set priorities or outcomes or suggest how success might be measured. The National Disability Insurance Agency (the Agency) has been given the Policy Framework and will now translate it into action. The ILC Commissioning Framework will outline the intended role of ILC, outcomes expected to be achieved, the way in which the Agency will source ILC activities as well as the proposed performance management approach. As part of the Agency’s commitment to Listen, Learn Build, Deliver, we wanted to seek the views of people with disability, their families and carers as well as providers on the development of the Commissioning Framework. In particular we wanted to hear from people with disability, their families and carers and people that work in the sector: 1. The intended role of ILC in both the NDIS and the National Disability Strategy, and the interaction between ILC and other systems of support; 2. The contribution of ILC to the NDS and NDIS outcomes and indicators of success 3. Proposed priorities for ILC funding. Rather than run the co-design process, the Agency invited over 100 disability sector and community organisations (partners) to lead workshops with their members on key elements of the Commissioning Framework during October. The partners included: a. Organisations participating in the Agency’s CEOs Forum (national sector peak bodies); b. Members of the Independent Advisory Council’s (IAC) Intellectual Disability Reference Group and Indigenous and CALD networks; c. Members of the National Mental Health Sector Reference Group; d. Potential partners identified through the Rural and Remote Working Group e. Organisations participating in the Disability Support Organisation project; f. Organisations identified by trial sites as offering a perspective and contribution not represented by the groups above groups above (including organisations identified by state government representatives). The Agency wanted people with disability, their families and carers and others with an interest in ILC to feel comfortable and free to share their thoughts and ideas on how ILC should be implemented. Page 3 By attending a workshop run by organisations in the sector rather than the Agency, we hoped participants would feel free to share all their ideas in a familiar environment. More than 50 community sector and disability organisations accepted the invitation to partner with Agency and delivered workshops with their members. The Agency provided materials and guidance to all co-design partners to facilitate workshops. Partners were encouraged to modify the materials or the workshops to meet the particular needs of participants. Co-design partners provided summaries of outcomes from workshops through an online survey. The responses collected from workshops have been summarised below. The Agency thanks all organisations who held workshops and all those individuals who took the time to participate. We believe the Consultation Draft of the ILC Commissioning Framework is stronger as a result of the feedback provided. The very detailed feedback provided will also be used in the development of the guidelines and materials to support the sourcing processes for ILC. These co-design findings will be published separately and circulated to all our valuable co-design partners. Page 4 Participation More than 50 community sector and disability organisations accepted the invitation to partner with Agency and delivered workshops with their members on the ILC Commissioning Framework. Co-design partners led more than 65 workshops with more than 1000 people participating, at an average of 15 participants per workshop. In addition to co-design workshops, nine organisations provided written submissions. Co-design workshops were held across all jurisdictions. Some workshops were run by co-design partners that operate in multiple states and territories. There were contributions from organisations working with the largest cohorts of NDIS participants, including people with an intellectual disability and people with autism, as well as participants from a culturally or linguistically diverse background (CALD) or Aboriginal or Torres Strait Islander background. State or territory Workshops QLD 7 NSW 8 ACT 3 VIC 25 WA 3 SA 10 NT 2 TAS 8 Page 5 Priority areas of investment ILC activities will be funded from a fixed pool of money. This means the Agency will need to prioritise programs and initiatives that will make the most difference to people’s lives. ILC activities will also be built around the central role of Local Area Coordinators (LACs). LACs will be the single largest investment by the Agency in delivering ILC outcomes. All other ILC activities will be funded on the basis that they complement and strengthen the role of LACs. The Agency has already identified five priority areas for ILC funding. To test the Agency’s thinking on workshop participants were asked to: a. Prioritise the Agency’s five proposed areas and identify any gaps and; b. Outline any risks and concerns with the five proposed priority areas Participants agreed that all of the Agency’s five proposed priority areas were important and this was reflected in the generally even spread of votes across all five areas. People acknowledged that some ILC investment areas may be a higher priority than others. People prioritised services based on personal circumstances, previous experiences with existing services; perceived gaps in current service delivery and on what they believed would achieve good outcomes. Many people had difficulty in explaining why individual investment areas were not a priority. People said that some investment areas were less important to them in comparison to other investment areas but that did not mean each of the five were not important to the overall success of ILC. A number of workshops and participants refused to prioritise. People said that was because all investment areas were important in different circumstances and for different population groups. People provided the following feedback on the five priority areas: a. Specialist or expert delivery People said that specialist or expert delivery of ILC services was important because: “It is essential to obtain expertise and targeted services and supports.” “Funding for ILC under the ‘Specialist or Expert Delivery’ stream is critical to ensure that there are appropriate supports for people with communication disabilities.” b. Cohort focused delivery People said that cohort focused delivery of ILC services was important because: “Cohort focussed activities support collaboration, peer support and individual capacity building, especially where there is a shared context or environmental factor that creates bonds and connections.” “Aboriginal people are most comfortable when services are delivered by their own, with a localised approach. Local Aboriginal communities know what is best for their communities and don't want the one size fits all approach in delivering outcomes.” c. Multi-regional supports Page 6 People said that multi-regional supports were important because: “Multi- regional supports was seen as an important step to pick up those participants that move across regions for cultural reasons and could access the same service outcomes no matter where they lived” “There is a need for some things to be co-ordinated across regions or things that might need a national approach” d. Rural and remote solutions People said that rural and remote solutions were important because: “It is important that the ILC funding program have the capacity to recognise the unique needs of people with disability living in rural and remote Australia. Access to support should not be a ‘post code’ lottery depending on where you live, nor should Australians with disability be disadvantaged because they are in a rural area with relatively few other people with disability.” “Consideration should be given to developing initiatives which will overcome some of the isolation caused by remoteness” e. Delivery by people with disability for people with disability People said that delivery by people with disability for people with disability was important because: “The message is far more real and powerful when being delivered by people with lived experience and this is what shifts community awareness in a positive way” “It is necessary that persons living with disabilities become more involved in the 'decision making' processes and being given the opportunity to have their say about what is important” Page 7 People also detailed a number of risks and concerns surrounding the roll out of the ILC and the five investment priority areas. To address these risks and concerns, people said that the Agency will need to: 1. Explain what kinds of supports may be delivered under individual priority areas 2. Explain the implications of overlapping of priority areas 3. Communicate what specific programs may be funded under ILC 4. Explain the types of supports that are provided as part of individually funded packages and ILC 5. Promote fair competition between small and large organisations across priority areas and geographic locations 6. Promote fair distribution of funding across priority areas and geographic locations. Page 8 Outcomes for ILC and Measures of Success ILC is an important part of the NDIS. It is not something separate ─ it is expected to contribute to the overall goal of the NDIS to increase the social and economic participation of people with disability. And just like the rest of the NDIS, the Agency will need to measure whether the ILC activities are making a difference to people’s lives. To test the Agency’s thinking on ILC outcomes and their measurement, workshop participants were asked to: a. Outline possible individual and community outcomes that the work of the ILC activities might contribute to; b. Discuss how ILC should measure individual and community outcomes ; c. Identify risks and concerns around the measurement of ILC outcomes People with disability, their families and carers, as well as service providers highlighted the importance of ILC, in conjunction with other systems, in achieving individual and community outcomes. Participants in the workshops were highly supportive of the need to measure the impact of ILC funding for both individuals and communities. They wanted to ensure funding was directed to towards activities that made a real difference to people’s lives. People provided a broad list of individual and community outcomes that ILC funded activities might contribute to. Outcomes focused primarily on social and economic participation of people with disability, families and carers. While most people were confident in articulating individual outcomes, some found it difficult to distinguish between community and individual outcomes. This meant that people provided fewer responses on community outcomes. “The measurement of outcomes is of fundamental importance” “There must be positive changes in the lives of people with disability, as well as positive changes in the lives of the families and carers of people with disability. Positive change should happen regardless of disability type, cultural background or where the person lives. Positive change should happen regardless of the severity of disability” “Participants focussed on the ability to live independently, social inclusion, on education and employment outcomes, as the most powerful individual-level indicators of the ILC working successfully” Page 9 Some of the key individual outcomes which came out of workshops included: Greater choice and control for people with disability People with disability, families and carers having improved confidence to access community and mainstream services Greater use of mainstream services, e.g. health and education Increase in confidence and self-esteem of person with disability Increase in independence of person with disability Increased skills and capacity, e.g. self-advocacy Increase in social and economic participation People with disability from CALD and Indigenous backgrounds exercise voice, choice and control and are able to maintain their cultural identity. Some of the key community outcomes which came out of workshops included: Increased community/ mainstream awareness and knowledge of how to support people with disability Increased community support for people with disability, families and carers Increased partnerships between organisations and individuals Informal support and care arrangements are upheld and nurtured Improved community attitudes Reduced discrimination against people with disability Increased awareness of cultural needs of people from an Indigenous or CALD background. Participants also noted other measures related to quality and effectiveness of services could be important to measuring the impact of ILC: People with disability reporting satisfaction with ILC services People with disability and their families from CALD and Indigenous backgrounds access disability services in the same way as others People with disability, families and carers have an active role in shaping supports and services. Page 10 How should ILC measure individual and community outcomes? People with disability, families and carers agreed that measuring individual and community outcomes is an important element of ILC. People said that ILC should measure individual and community outcomes through a variety of mechanisms that allow people with disability, families and carers to be directly involved in the process. “It is vital that the NDIS gets the indicators correct and commits to measuring change over time and being transparent and open in its communication - as all Australians have a role to play” “Participants stated people with disability must be asked about changes and outcomes for them” Some of the key suggestions which emerged in workshops included: 1. People with disability are at the centre of outcomes measurement People said that people with disability are best placed to provide feedback on ILC services. 2. User friendly and accessible measurement People said that in order to accurately measure individual and community outcomes, measurement tools need to be user friendly and accessible for people with disability, their families and carers, as well as service providers. People also said it was important to ensure tools captured feedback from people across disability types, as well as people from an Indigenous or CALD background. 3. Independence People said outcome measurement methods need to be balanced and free of bias. 4. A mixed method approach People said that both quantitative, e.g. surveys, and qualitative methods, e.g. story-telling and interviews, should be used to capture ILC outcomes. People believe that a combination of both methods will promote genuine participation from people with disability and will lead to robust measurement. 5. Benchmarking People said that is important that ILC service providers are held accountable for achieving and reporting ILC outcomes. In order to promote accountability, people suggested that ILC outcomes need to be compared between individual providers. People also said it is important to compare outcomes between people with disability and the general population in order to hold community and mainstream services accountable. Page 11 6. Longitudinal data analysis People noted that some outcomes take a long time to achieve and cannot be observed at a single point in time. People therefore said it was important to measure outcomes at multiple points in time. 7. Pre and post analysis People said that it is important to measure individual and community outcomes before and after ILC services in order to accurately capture the difference activities have made. Risks and concerns While participants were supportive of measuring outcomes, they did raise a number of concerns. 1. Cultural diversity Participants expressed concern about using a “one size fits all” approach to capturing outcomes. People believe it is important that outcomes measurement recognises the diversity in disability as well as cultural diversity of Indigenous and CALD communities. “Participants were worried that initiatives funded under each of the 5 Funding Areas may not be measured against criteria that evaluate whether the service was appropriate to people with disabilities from CALD backgrounds” 2. Different communication methods People expressed concerns over the use of online methods as the primary way to capture outcomes. People believe it is important that methods are adaptable and appropriate for all people with disability. “The NDIS must make sure all measurement is not done online/technology based” “Make it accessible to all people; important that people with intellectual and learning disability can access and have a voice” 3. Bureaucracy and system complexity People expressed concerns over the possible complexity of the ILC outcome measurement system. People believe it is important that the system is easy to understand and does not place unreasonable demands on organisations or people with disability, families and carers. “An overly bureaucratic system that compromises the funding available by administrative burdens…reduces dollars for direct services.” Page 12 4. Regular and clear communication People believe it is important the Agency incorporates their views of outcomes measurement before finalising any approach. “NDIA needs to clearly communicate details about how they intend the ILC to operate, in a timely manner. There should also be sufficient time allocated to consult with the sector more broadly and in a more inclusive manner” 5. Short term focus People expressed concerns over the use of short term focused outcomes measurement tools. People believe it is important that methods recognise short, medium and long term outcomes. “Some things take a long time to change and measure” 6. Measurement challenges People expressed concerns over the use of quantitative methods for capturing all outcomes. People believe it is important to consider methods which also capture unquantifiable outcomes. “ILC supports, particularly for those with psychosocial disability or communication disability may be more difficult to quantify in outcomes – but are critical to ensure that people with these disabilities are supported through ILC” 7. User involvement People expressed concerns over the use of level of involvement from people with disability in measuring ILC outcomes. People believe it is important the people with disability are directly involved in the measurement of outcomes. “The risks that were foreseen were that individuals would not participate in any ILC measurements or change and this could result in programs or resources in community being defunded, because the real story would not be told.” Page 13 Further information As part of the co-design workshops people outlined a number of areas in which they wanted more information. These areas included: ILC transition plans with jurisdictions Funding arrangements for specific sectors, particular advocacy and carers programs The role of Local Area Coordinators and their interaction with other ILC activities The interface between ILC services and mainstream The roll out schedule of the NDIS The intended interaction between ILC and individually funded packages (individual plans). Lessons learnt The feedback provided through the co-design workshops has made an invaluable contribution to the development of the Commissioning Framework. In addition to providing feedback on key elements of the ILC Commissioning Framework many participants also took the time to provide feedback on the process itself. Some of the key pieces of feedback included: The value of co-design in the development of policy or operational design which promotes shared understand and meaning The importance of workable timeframes for individuals and organisations to allow all people with disability, families and carers the opportunity to participate. Many organisations commented the time provided was not sufficient to engage with their members to the degree they would have liked The importance of broad consultation with diverse groups, e.g. CALD, Indigenous, mental health etc. Co-design as an ongoing process of asking, listening, responding and asking again; not a one -off consultation In response to people’s feedback the Agency has decided to release a Consultation Draft of the Framework rather than the final version. This will give the Agency more time to engage with people with disability, families and carers, as well as providers around key aspects of the Framework. This will in turn allow the Agency to develop a Framework that is stronger and better reflects the needs and aspirations of those it is designed to support. The Agency will release details of the next phase of consultation early in 2016. Page 14