2. Rights and Advocacy for ALL People with Disability ADVOCACY AND THE NDIS

3. What is Advocacy? Advocacy is speaking Writing Acting Advocacy is speaking Writing Acting

4. What does Advocacy Mean? To speak or act on behalf of a disadvantaged person or group by:- Being loyal and on their side and nobody else's Being concerned with their most important needs Being honest and accountable to that person Being strong and staying true to the effort

5. ●Being concerned with the rights and needs of the person or people ●Being loyal and accountable to the person or people ●On their side and nobody else's ●Different to service provision ●Independent to avoid conflict of interest ●Costly to the advocate in time, energy and social terms. ADVOCACY IS

6. TYPE OF ADVOCACY Individual – Speaking up for another person Systemic – Speaking up for a group of people Citizen Advocacy – A volunteer advocate who is matched to the person, usually someone with no other family or friends who can do this Parent Advocacy – Parents speaking up for people with disability Self Advocacy – People speaking up for themselves

7. KEY ELEMENTS OF ADVOCACY Functioning by speaking out, acting or writing Minimal conflict of interest Sincerely perceived interests Promotion of person’s welfare, well being and justice Vigour of action Costs to the advocate & Costs to person needing advocacy

8. OTHER KEY ELEMENTS OF ADVOCACY 1. Being on the side of the disadvantaged party2. Fidelity / Stick-to-it-ness3. Emphasis on major needs 4. Mindful of parties even more needy than the person you are advocating for (even if that is yourself)

9. WHAT IS NDIS? NDIS is short for National Disability Insurance Scheme. It’s a new way of supporting people with a permanent and significant disability

10. KEY WORDS ABOUT NDIS The NDIS connects and supports  a national scheme to provide targeted support and better coordination and access to services for people with disabilities.  a single national system, which means regardless of what kind of disability you have and where you live, you will be able to equally access existing services or supports.  The opportunities and potential the NDIS presents can range from managing, self directing and employing your own support staff or utilising traditional registered service providers.

11. NDIS The NDIS was launched on 1 July 2013. The Scheme has been progressively rolled out following either of these two approaches: 1. Regional trial sites: where all eligible people within the bounds of a regional trial site can access services via the NDIS. 2. Ages and stages: where people from specific age ranges, who also meet certain criteria, can access services via the NDIS across the entire state or territory. 3. The National Disability Insurance Scheme (NDIS) will progressively roll out across Queensland over a three year period beginning in Townsville, Charters Towers and Palm Island.

12. At a Queensland Advocacy Inc Forum and Workshop – People with disability, family members and advocates discussed individual issues, the NDIS and advocacy, and collaborated to create this resource

13. Individual Issues with Systemic Impact  The transition from block funding to individualised supports – who will be worse off and how than this be avoided?  A national approach to support for decision-making that is independent and free from conflict of interest or coercion  Insufficient culturally appropriate supports and services in rural and regional areas particularly for indigenous communities  Lack of promotion of self-direction and self- management  Poor service quality and delivery now – will it change with the NDIS?  A need for more independent advocacy in more areas

14. THINKING ABOUT ADVOCACY AND THE NDIS Identifying the systemic issue from individuals’ stories… The reach of information about the NDIS is limited, confusing, and does not translate practically for many people with disabilities especially with the continued use of jargon Individuals have diverse needs and issues that impact upon their opportunities to have a voice in the process and to be listened to. Concern that nothing is going to change – just a name change

15. Systemic Issues and the NDIS  NDIS assessment process – people have a lack of confidence in the approach to assessment process that fails to recognise the lived experience, and its impact upon eligibility  NDIS funding details of supports and services – Information of funding details is unclear and a lack of confidence in a holistic approach to support and ease of access and management  NDIS complaints – concerns regarding a perceived lack of action about the substance of complaints and merely checking that processes are followed.

16. THINKING ABOUT ADVOCACY AND THE NDIS How do individuals think the system should change?  Improve more effective communication pathways between NDIS system and individuals  Ensure more diverse options and solutions for individuals who all have different conditions and needs  Clarify funding process, assessment process that listens to individuals rather than a check list, using simple language for individuals to understand  Provide extra funding to increase informal and formal supports  A more transparent system with higher levels of scrutiny of NDIA, service providers, their activities, monopolies and practices

17. How do individuals think the system should change?  Target funding to increase independent advocacy in local neighbourhoods, particularly increase citizen advocacy  Ensure that LAC’s, planners and others engaging with diverse groups and or in rural, regional and remote areas are culturally appropriate  Use language people understand  Ensure LAC’s refer people to independent individual or citizen advocacy organisations  Ensure that people who have no informal supports are linked to advocacy

18. THINKING ABOUT ADVOCACY AND THE NDIS How would you go about changing this system/policy/practice? Independent supervision system of the NDIA/NDIS Formal and informal independent advocates, including citizen advocacy  People with disability should be leading this system – not bureaucrats – listen to people with disability and their supporters  Organisations and academics stand up for disability  Family/ friend/peer/community support

19. THNKING ABOUT ADVOCACY What difference does Systems Advocacy make? Systems Advocacy Most effective means to create change with minimal conflict of interest Help most vulnerable individuals as a collective; working with people with lived experience Speaks up for most vulnerable; educates community; promotes people with disability Create precedents Collect and present stories; holds the social disability ‘history’; data and research Effective use of resources to indirectly assist individuals by systemic change

20. THINKING ABOUT ADVOCACY What are the threats to Advocacy?  Insufficient independent advocacy organisations and insecurity of funding  Lack of respect for advocacy and understanding its importance – no ‘corporate memory’ in government  Negative media and misleading stories around people with mental illness and people with disability  Detachment of vocation of advocacy – threat to independence of advocacy

21. THINKING ABOUT ADVOCACY How can we safeguard Systems Advocacy?  Ensure independence of advocacy and its focus  Funding must be secure and ongoing  Separation of advocacy from service provision  Fund advocacy organisations to provide education about advocacy – particular focus on advocacy principles  Foster a community culture of people supporting one another  Enable advocacy organisations flexibility to work together and with people with disability and their families while respecting the ethical use of personal stories  Government should be having continual conversations with advocacy organisations