Building the capacity of people with disabililty, their families and carers

Disability Loop

This project aimed to increase the capacity of people with disability and their families to engage with the NDIS and exercise choice and control.

Organisation: Australian Federation of Disability Organisations (AFDO)

Timeframe: 2014–16 (complete)

Location: National

Overview:This project recognised that to become informed NDIS participants and take control of their supports, people with disability need information and resources that:

  • use clear and simple language
  • are available in different accessible formats
  • are specifically developed for them, not just carers and family members
  • include information and support provided by peers
  • help them to identify goals for the future when they have not previously had the opportunity to do this
  • cover key NDIS topics, including planning and reasonable and necessary supports.

AFDO developed multiple ways to build understanding of the NDIS and capacity to exercise choice and control among people with disability, their families and the broader community.

  • The Disability Loop website and YouTube channel connect people with disability to the information and resources they need to engage with the NDIS in accessible formats, including Easy Read and videos. The website includes new information, and resources and links to other existing resources. Webinars on key elements of the NDIS have been developed and shared through the website and YouTube Channel. Updates are shared through the Disability Loop E-Newsletter, Facebook and Twitter accounts.
  • Thirty people with disability from across Australia have been trained and employed as NDIS Champions to deliver reliable information about the NDIS in their local communities.
  • A series of six train-the-trainer 'Understanding the NDIS' workshops have been delivered to staff and volunteers of community-based disability and cultural support organisations to build their capacity to inform people with disability and families about the NDIS.
  • A series of four 'Opportunities in the NDIS' workshops have been delivered to CEOs, senior managers and board members of small community-based disability and cultural support organisations to build their capacity to navigate the NDIS.

AFDO has also consulted with a broad range of organisations to advise the NDIA on operational issues and engagement with particular groups, including young people, women, people from CALD backgrounds and people with specific types of disability.

Outcomes: This project contributed to SDF Outcome 1—build community capacity and engagement—and SDF Outcome 2—increase capacity of people with disability and their families to exercise choice and control and develop new forms of support to meet the needs of people with disability.

It developed information and resources to fill key gaps identified through initial consultations across Australia.

To date, there has been a steadily growing take-up of Disability Loop resources and positive feedback on the content.

Workshop participants appreciated the clear and accurate information, the quality of the take-away resources and the opportunity to learn through discussion with their peers. Overall, 96 per cent of participants reported an increase in understanding of self-management, independence and community inclusion; 98 per cent reported an increase in understanding of the NDIS; 99 per cent reported an increase in confidence in dealing with the NDIS; and 96 percent reported an increase in ability to exercise choice and control in the NDIS.

The NDIS Champions program developed a peer-to-peer information sharing process, an effective way to transfer awareness, knowledge and skills and help to re-frame negative experiences. The program has also provided an additional employment pathway for people with disability. For many of the Champions, the role was their first experience as a paid employee.

Project resources:

Disability Loop

NDIS Champions

Key contact details:

Email: disabilityloop@afdo.org.au

Phone: 03 9662 3324 or 1800 219 969 (toll free)

You might also be interested in:

  • People with disability: joining a Peer Support Network.
  • Carers: accessing information and resources through the NDIS & Carers section of the Carers Australia website or finding out more about how the NDIS works from another carer who has been through the NDIS planning process.
  • Adult siblings of people with disability: accessing information, resources and peer support from other people with similar experiences through the Siblings Australia website.
  • Families of young children with disability: accessing information and resources to support you through your NDIS journey and engage with early childhood intervention through The Inclusion Hub website.

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Peer Connect

This project aimed to build the capacity of people with disability, their families and carers to exercise choice and control when engaging with the NDIA, registered providers and mainstream and community services.

Organisation: JFA Purple Orange leads the project, with 18 Disability Support Organisations operating Peer Support Networks.

These are: First Peoples Disability Network, Aboriginal Disability Network (which has now merged with First Peoples Disability Network), Amaze (Victoria), Association for Children with a Disability (Victoria), Carers Victoria, Victorian Advocacy League for Individuals with Disability Inc. (VALiD), Victorian Mental Illness Awareness Council, Down Syndrome Association of Victoria, Down Syndrome NSW, Down Syndrome WA, Developmental Disability WA, People With Disabilities WA, Families4Families Inc. (SA), New South Wales Council for Intellectual Disability & Intellectual Disability Rights Service consortia, People with Disability Australia (NSW), Physical Disability Council of NSW Incorporated, Queenslanders with Disability Network and Speak Out Advocacy (Tasmania).

Timeframe: 2014–16 (complete)

Location: Initially in Trial sites and now various locations nationally

Overview: This project recognised that some people with disability, their families and carers, accustomed to the limited choices provided in a block funding environment, would require support to become informed and engaged NDIS participants.

Funded organisations have established a range of Peer Support Networks—some open to all people with disability and some for particular population groups or people with particular types of disability. Community and peer connectors facilitate the Networks; providing information about how the NDIS is supposed to work, encouraging members to share information, and supporting members to identify their goals and the supports they need. Members have discussed a broad range of subjects—from identifying goals and making decisions, to getting a job, feeling safe when living alone, advocating for better public transport and educating the community about disability.

JFA Purple Orange has developed online resources, run workshops and facilitated a Community of Practice to support the Networks and enable sharing of learnings and resources. JFA Purple Orange has also provided strategic advice to the NDIA about options to support people with disability and their families before they develop their NDIS plan.

It took some time for funded organisations to find community and peer connectors to facilitate the Networks and engage people with disability as members, but demand has grown over time. Organisations had to find transport options and use interpreters and assistive technology to enable people with disability to participate. They also found that it was important to create a ‘safe space’ for members to ask questions and share information, go at the right pace for members, and break issues down into smaller problems that could be addressed one at a time to build members’ decision making capacity. Some funded organisations have established separate groups for people with disability and their family members, while others have kept groups small so that they can adequately support members with particular needs. Some funded Disability Support Organisations found partnering with other local organisations useful for pooling resources, networking relationships and forming Networks for people with specific needs.  

Outcomes: This project contributed to SDF Outcome 2—increase capacity of people with disability and their families to exercise choice and control and develop new forms of support to meet the needs of people with disability.

Networks have built members’ understanding of the NDIS through discussions and the correction of myths and misinformation, and helped to reduce anxiety about the NDIS. They have increased members’ confidence to ask questions, make choices and advocate for their needs. They have also provided an opportunity to make new friends and social connections, which members valued highly.

Additionally, people with disability engaged as peer connectors have gained skills, employment experience and the opportunity to work as leaders.

Project Resources: Check out the PeerConnect website (external) to:

  • find out how to join an existing Network
  • find out how people with disability, their families and supporters can support each other
  • access webinars on key topics, such as facilitating Peer Support Networks, e-markets and the NDIS, and partnership in self-directed support
  • learn more about important topics like supported decision making and parenting, and living with a disability
  • access resources on planning for a good life.

Key contact details:

JFA Purple Orange

You might also be interested in:

  • People with disability and carers: finding out more about how the NDIS works from another person with disability who has been trained as an NDIS Champion through Disability Loop project.
  • Carers: accessing information and resources through the NDIS and Carers section of the Carers Australia website or finding out more about how the NDIS works from another carer who has been through the NDIS planning process.
  • Adult siblings of people with disability: accessing information, resources and peer support from other people with similar experiences through the Siblings Australia website.
  • Families of young children with disability: accessing information and resources to support you through your NDIS journey and engage with early childhood intervention through The Inclusion Hub website. 

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Capacity building for carers

This project aims to better inform people with disability, their families and carers about the NDIS, and increase their capacity to exercise choice and control in planning and accessing supports. 

Organisation: Carers Australia

Timeframe: 2014–17 (current)

Location: Initially in Trial sites and now national

Overview: This project recognises the important role carers will play in supporting people with disability to plan their goals and take control of their supports in the NDIS, and the need to provide them with clear information.

The project has developed resources and a range of ways of providing information to meet carers’ needs and build their capacity to engage with the NDIS.

  • The NDIS and Carers section of the Carers Australia website provides information about how the NDIS works, and resources to support carers to engage with the NDIS. Resources currently being developed cover self-management, Information, Linkages and Capacity Building, succession planning, and specific resources for Indigenous people, culturally and linguistically diverse people, people with psychosocial disability, people in rural and remote areas, and young carers.
  • Information and training sessions about the NDIS were run for carers in the Nepean/Blue Mountains area, carers of children receiving Better Start funding, Better Start Advisors, and carers and providers at Family Forums in 2015.
  • Carers Australia is supporting a core group of 28 carers of NDIS participants as Peer Conversation Partners who provide advice about the NDIS to carers or groups of carers of future NDIS participants through a 1800-number. An online NDIS Community of Interest will be established to provide ongoing support for carers beyond the project.

It took time and individual support to build trust and engage carers as Peer Conversation Partners. Working with local service providers helped to promote the project and engage carers. Setting clear and manageable parameters for the role made it easier for carers, who have a range of demands on their time, to become Peer Conversation Partners.

Outcomes: This project contributes to SDF Outcome 1—build community capacity and engagement—and SDF Outcome 2—increase capacity of people with disability and their families to exercise choice and control and develop new forms of support to meet the needs of people with disability.

The project has developed resources and an innovative peer-to-peer model of carer support to address the issues identified through initial research with carers. The findings of the research with carers have been provided to the NDIA to inform NDIS operations.

Project resources: Check out the NDIS and Carers section of the Carers Australia website (external) for:

  • information about the NDIS in Plain English and video formats
  • videos of carers talking about their experiences of the NDIS
  • a checklist to help carers prepare for assessment and planning meetings
  • samples of carer statements submitted to the NDIA to be considered in planning.   

Find out more about the Peer Conversation Project and request a Peer Conversation (external)

Background research:

The findings from the 2015 survey of carers are available in this report (external)

Key contact details:

Email: carers.ndis@carersaustralia.com.au

Phone: 02 6122 9900

You might also be interested in:

  • All carers: accessing information and resources through the Disability Loop website and Youtube Channel.
  • Families of young children with disability: accessing information and resources to support you through your NDIS journey and engage with early childhood intervention through The Inclusion Hub website. 
  • Adult siblings of people with disability: accessing information, resources and peer support from other people with similar experiences through the Siblings Australia website.
  • Mental health carers: accessing the Guide for Mental Health Carers on the NDIS and the Mental Health Carer Checklist for support in preparing for NDIS planning meetings.

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Creating capacity: support for adult siblings

This project aims to build the capacity of adult siblings of people with disability to understand the NDIS and support their brothers or sisters with disability in the transition to the NDIS.

Organisation: Siblings Australia

Timeframe: 2016–17 (current)

Location: National

Overview: This project recognises the important role that adult siblings play in the lives of their brothers and sisters with disability and the way their needs differ from their parents.

It is building the capacity of adult siblings to understand the NDIS, support and advocate for their sibling within the NDIS, and access support for themselves through:

  • online sibling-specific information packages and resources covering topics, such as the roles siblings can play, future planning and decision making, financial planning, and establishing circles of support
  • opportunities for siblings to access peer support and learn from others with similar experiences.

It is building the capacity of disability and mainstream services to support siblings as part of a ‘whole of family’ approach through the development of:

  • information packages, resources and training for providers to better understand the sibling experience and better support siblings in their various formal and informal roles
  • preliminary national practice guidelines to assist organisations to engage and support siblings. 

A national reference group of relevant stakeholders is advising on the project.

Outcomes: The project contributes to SDF Outcome 2—increase capacity of people with disability and their families to exercise choice and control and develop new forms of support to meet the needs of people with disability.

It will meet siblings’ request for information that is specific to their needs and support from other siblings in similar situations.

Key contact details:

Submit an email enquiry through the Siblings Australia website (external)

You might also be interested in:

  • All carers:
    • accessing information and resources through the NDIS and Carers section of the Carers Australia website or finding out more about how the NDIS works from another carer who has been through the NDIS planning process.
    • accessing information and resources through the Disability Loop website and Youtube Channel.

Mental health carers: accessing the Guide for Mental Health Carers on the NDIS and the Mental Health Carer Checklist, for support in preparing for NDIS planning meetings.

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Building the capacity of families of children with disability to engage with the NDIS

This project aimed to build the capacity of families of young children with disability to engage with early childhood intervention in the NDIS. The Early Childhood Intervention Australia (Victorian Chapter) was also funded to support the delivery of best practice early childhood intervention.

Organisation: Early Childhood Intervention Australia (ECIA) (Victorian Chapter)

Timeframe: 2015–16 (complete)

Location: National

Overview: This project recognised the difficulties families of young children can face navigating service systems, choosing early childhood intervention providers and identifying opportunities to support their children’s inclusion in mainstream and community services.

It developed The Inclusion Hub to support families through their entire NDIS journey and educate community members, including early childhood education providers, so that families of all children with disability have access to up-to-date information about the NDIS. The Inclusion Hub provides written and video information and resources, and includes translation facilities.

Outcomes: This project contributed to SDF Outcome 1—build community capacity and engagement—and SDF Outcome 2—increase capacity of people with disability and their families to exercise choice and control and develop new forms of support to meet the needs of people with disability.

Since its launch, The Inclusion Hub has attracted interest and been well received. It has gained a permanent position in online resource directories, been shared widely across social and industry media platforms, and been promoted by early childhood intervention providers to the families they support. Families have reported that The Inclusion Hub provides straightforward, jargon-free, targeted information about early childhood intervention and the NDIS.

Project resources: Check out The Inclusion Hub (external) for:

  • a resource directory of useful documents and webpages
  • information about accessing early intervention through the NDIS and choosing an early intervention provider
  • a glossary of key terms used in the NDIS
  • webinars.

Key contact details:

Submit an email enquiry through the ECIA (Victorian Chapter) website (external)

Phone: 03 8559 2620

You might also be interested in:

  • Accessing information and resources through the Disability Loop website and Youtube Channel.
  • Accessing information and resources through the NDIS & Carers section of the Carers Australia website or finding out more about how the NDIS works from another carer who has been through the NDIS planning process.
  • Accessing the Ready Set Go Booklet for support to make well-informed decisions about your child’s education and advocate for their learning needs. 

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Mental Health Australia's NDIS capacity building project

This project aimed to build the capacity of people with psychosocial disability and their carers to engage with the NDIS. Mental Health Australia was also funded for activities to build the capacity of mental health service providers.

Organisation: Mental Health Australia

Timeframe: 2014–16 (complete)

Location: National

Overview: This project recognised the need for specific resources to support people with psychosocial disability and their carers to transition to the NDIS.

It involved a range of activities to build understanding of the NDIS, and the capacity for choice and control among people with psychosocial disability and their carers.

  • Mental Health Australia and Carers Australia developed a Guide for Mental Health Carers on the NDIS and a Mental Health Carer Checklist, and have provided these through their website, along with other Plain English information about engaging with the NDIS.  
  • Richmond Wellbeing ran a national series of capacity building train-the-trainer and information workshops for people with psychosocial disability and their carers, in urban, regional and remote areas in 2016.
  • The Queensland Alliance for Mental Health undertook peer-led community engagement activities on Palm Island, including a survey, community consultations and information sessions. These were designed to identify opportunities and challenges in building capacity to engage with the NDIS among Indigenous people with psychosocial disability and their carers on Palm Island.
  • The ACT Disability, Aged and Carer Advocacy Service was engaged to develop an educational video on supported decision making, after conducting research and engaging with experts on the subject.

These activities were informed by an NDIS Mental Health Consumer and Carer Advisory Group. In delivering the project, Mental Health Australia found it important to maintain a flexible approach to ensure the project activities met emerging needs.

Leveraging social media and existing NDIS communication channels helped increase the project’s reach. With the workshops, it was important to: promote them early, clearly specifying the intended audience; align timing with NDIS rollout milestones and other NDIS activities; use welcoming and accessible venues with enough parking and public transport close by; and take a flexible approach to delivery, including allowing time for broader questions about the NDIS. With Indigenous communities, one-to-one conversations and ‘yarning’ were more appropriate.

Outcomes: This project contributed SDF Outcome 1—build community capacity and engagement—and SDF Outcome 2—increase capacity of people with disability and their families to exercise choice and control and develop new forms of support to meet the needs of people with disability.

The Guide for Mental Health Carers on the NDIS and the Mental Health Carer Checklist are designed to build the capacity of carers to effectively engage with the NDIA by meeting the need for systematic information about how to prepare for NDIS planning meetings identified through initial research.

The train-the-trainer and information workshops run by Richard Wellbeing achieved significant reach and were very positively received. Overall, 99 per cent of consumers, 97 per cent of carers and 97 per cent of service providers who attended said they were satisfied with the peer education and/or train-the-trainer resources and activities. They reported increased knowledge, skills and confidence to engage with the NDIS and increased capacity to exercise choice and control or help others to do so. Facilitators also received praise for their friendliness and clear presentations. 

The educational video on supported decision making helps clarify what supported decision making is and how it can work for people with psychosocial disability, whose needs and decision making capacities fluctuate over time.

Project resources:

Access information about the NDIS Capacity Building Project (external), including a webinar to assist mental health carers to engage with the NDIS and resources from the Richmond Wellbeing capacity building train-the-trainer and information workshops.

The Guide for Mental Health Carers on the NDIS and the Mental Health Carer Checklist (external)

Background research:
Supported Decision Making, Psychosocial Disability and the NDIS (external) paper(2016).

Mental Health Carers and the NDIS: Issues Paper (external) (2016), developed with Carers Australia.

Key contact details:

Email: NDIS@mhaustralia.org

Phone: 02 6285 3100

You might also be interested in:

  • People with disability, their families and carers: accessing information and resources through the Disability Loop website and Youtube Channel.
  • People with disability: joining a Peer Support Network.
  • Carers: accessing information and resources through the NDIS & Carers section of the Carers Australia website or finding out more about how the NDIS works from another carer who has been through the NDIS planning process.
  • Adult siblings of people with disability: accessing information, resources and peer support from other people with similar experiences through the Siblings Australia website.

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Capacity building in Indigenous communities

Indigenous capacity building project

This project aimed to raise awareness and understanding of the NDIS in urban, regional and remote Indigenous communities and assist Indigenous people with disability, their families and carers to engage with the NDIS. First Peoples Disability Network was also funded to undertake capacity building activities with Indigenous organisations and mainstream services.

Organisation: First Peoples Disability Network

Timeframe: 2013–15 (complete)

Location: National, with a particular focus on Trial sites

Overview: This project recognised that Indigenous people with disability and their families may face a number of barriers in engaging with the NDIS and in taking up the option to self-manage their supports. These include alternative cultural understandings of, and attitudes toward, disability; mistrust of government agencies; and a lack of decision making supports and knowledge about available disability supports.

The project included a range of activities to raise awareness and understanding of the NDIS and person-centred approaches to disability support among Indigenous communities, including community consultation forums, attendance at community events and expos, meetings with Indigenous organisations, and media interviews. Discussions also focused on appropriate models of supporting Indigenous people with disability in their communities.

The project was informed by the Ten Point Plan for the Implementation of the NDIS in Aboriginal and Torres Strait Islander communities, which was developed based on consultation with Indigenous people.

Outcomes: This project contributed to SDF Outcome 1—build community capacity and engagement—and SDF Outcome 2—increase capacity of people with disability and their families to exercise choice and control and develop new forms of support to meet the needs of people with disability.

This project began conversations with Indigenous people with disability to increase their understanding and likelihood of, engagement with the NDIS. It also identified effective strategies for supporting Indigenous people with disability in the context of their community.

Project resources: You can find out more about what the First Peoples Disability Network is doing to support Indigenous people with disability on their website (external).

The First Peoples Disability Network has created a video describing the Ten Point Plan for the Implementation of the NDIS in Aboriginal and Torres Strait Islander communities (external) and their work to build the capacity of individuals and the disability sector to better support Indigenous people with disability.

Email enquiries@fpdn.org.au

Phone: 02 8399 0882

You might also be interested in:

  • Joining a Peer Support Network, including a Network for Indigenous people with disability, their families and carers.
  • Accessing information and resources through the Disability Loop website, including the ‘Let’s Yarn’ page for Indigenous people with disability.

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APY lands remote service delivery

This project aimed to support Indigenous families living in the Anangu Pitjantjatjara Yankunytjatjara (APY) Lands to engage with and benefit from, the NDIS.

Organisation: Ngaanyatjarra Pitjantjatjara Yankunytjatjara Women’s Council

Timeframe: 2014 (complete)

Location: APY Lands, South Australia

Overview: This project recognised the barriers that Indigenous people in remote areas can face in accessing the NDIS, including: language barriers; alternative cultural understandings of, and attitudes toward, disability: lack formal diagnoses related to proof of identification requirements: and distance and higher service costs. 

The project used an outreach approach. It began with a workshop in Alice Springs with senior women from the APY Lands who could then share information about the NDIS within their community. The workshop helped to establish a shared understanding of disability for the purpose of accessing the NDIS, and a starting point for resources to explain the concepts behind the NDIS. Following this, the project:

  • held public meetings about the NDIS in six communities
  • discussed the NDIS with individual families and service providers
  • identified children eligible for the NDIS and worked with the NDIA planner to support them to register.

It was able to engage people through word-of-mouth strategies and face-to-face meetings, involving extended families, and going at a pace people were comfortable with. It also found that families may need support to address immediate needs before they can engage in planning, and that long-term planning may not be an unfamiliar concept.

Outcomes: This project contributed to SDF Outcome 1—build community capacity and engagement—and SDF Outcome 2—increase capacity of people with disability and their families to exercise choice and control and develop new forms of support to meet the needs of people with disability.

By the end of the project, a small number of families had agreed to engage with the NDIS and some had worked with an NDIA planner to register their children for the NDIS.

The project also provided recommendations for a broad framework to support work with families and children in the APY Lands and increase the range and level of services and supports available locally. The project informed preparation for other aspects of the NDIS, including Local Area Coordination.

Project resources: The final report (external) summarises the project’s key achievements and describes how the NDIS can be successfully rolled out in the APY Lands.

Key contact details:

Email: enquiries@npywc.org.au

Phone: 08 8958 2345

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Improving access for Indigenous families in Oak Valley and Yalata

This project aimed to support Indigenous people with disability, their families and carers in Oak Valley and Yalata to benefit from the NDIS.

Organisation: Tullawon Health Services

Timeframe: 2014 (complete)

Location: Oak Valley and Yalata, South Australia

Overview: This project recognised the need to engage Indigenous families in conversations about the NDIS to build trust and support access.

This project raised awareness of the NDIS among families in Oak Valley and Yalata.

Outcomes: This project contributed to SDF Outcome 1—build community capacity and engagement—and SDF Outcome 2—increase capacity of people with disability and their families to exercise choice and control and develop new forms of support to meet the needs of people with disability.

Key contact details:

Email: admin@tullawon.org.au  

Phone: 08 8625 6255

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