Centre for Disability Research and Policy

1. Centre for Disability Research and Policy

2. The Centre Vision Vision • A better life for people with disabilities in Australia and abroad Focus • The social and economic participation of people with disabilities and their health and well-being over the life course Our contribution • We will achieve this by playing a leading role in research innovation, knowledge exchange and translation in the field of disability. • We bring academic rigour. Our strength is scientific method. • We develop and trial models and we conduct proper evaluations of these models. On that basis we propose tried and tested solutions. • We provide robust recommendations to advance policy and practice.

3. http://sydney.edu.au/health-sciences/cdrp/about.shtml Value Statement • The Centre exemplifies the United Nations Convention on the Rights of Persons with Disabilities - the purpose of which is: to promote, protect and ensure the full and equal enjoyment of all human rights and fundamental freedoms by all persons with disabilities, and to promote respect for their inherent dignity. • We adhere to the principle: “Nothing about us without us”.

4. Aim and emphasis • Our aim is to enable people with disabilities to have an equal opportunity to realise their potential and participate productively in society. • We focus on maximising the social and economic participation of people with disabilities for personal, social and community benefit • Our emphasis is on research and real-world analyses of the problems faced by people with disabilities, and on providing practical policy solutions to governments, service providers and policy makers

5. Centre arrangement

6. Internal Organization Work Plans and personnel • Work Plans for each Stream • Projects which span across the Centre • Personnel • Nathan Wilson as 0.2FTE Project Officer • Dana Higgins as 0.2FTE Administration Support • Sylvia Lohrengel as RGA (shared with FRG)

7. Influencing Policy Events, Policy Bulletins, Submissions and Relationships with State and Federal governments • Events • http://sydney.edu.au/health-sciences/cdrp/events/past-events.shtml • Policy Bulletins • http://sydney.edu.au/health-sciences/cdrp/publications.shtml • http://sydney.edu.au/health-sciences/cdrp/publications/policy-bulletins.shtml • Technical Working Papers • http://sydney.edu.au/health-sciences/cdrp/publications/technical-reports/left-behind2.shtml • Submissions • http://sydney.edu.au/health-sciences/cdrp/publications/submissions.shtml

8. Cross Centre Projects Relationships with sector and grants • Strong relationships with NGOs and DPOs • As members of Management Committee • As members of Research Teams • As members of Advisory Committees • Audit of Disability Research in Australia • Funded by Disability Policy and Research Working Party • Australian cross – jurisdictional • Developed National Disability Research and Development Agenda, 2011 • Funded CDRP to undertake the audit – which is at mid term point with end date April 2014 • Recommend gaps in evidence base and provide comprehensive data base of disability research in Australia

9. Email: gwynnyth.llewellyn@sydney.edu.auCentre for Disability Research and Policywww.sydney.edu.au/health_sciences/cdrp/ Email: disabilitypolicy.centre@sydney.edu.auPhone: 61 2 9351 9721

10. CDRP Disability Services Stream Faculty Forum, 24th October, 2013 Professor Roger Stancliffe

11. LINKAGE PROJECT – 2013 to 2016 A toolkit to build the capacity of disability staff to assist adults with intellectual disability to understand and plan for their end of life Arose from doctoral study on end-of-life care in community living services. Findings included: • Staff unanimous that people with intellectual disability should know about dying. • In practice staff offer limited opportunity. • People with intellectual disability are exposed to dying and death. • Concerns around capacity to understand. • Staff untrained about dying and death. Implications: • No opportunity for self-determination about own dying/ confusion/ fear. • Staff distress about honouring dying person.

12. THE PROJECT “A toolkit to build the capacity of disability staff to assist adults with intellectual disability to understand and plan for their end of life” Aims • Part 1: Determine end-of-life understanding of clients and staff. • Part 2: Design and evaluate toolkit for staff to assist clients to better understand end of life.

13. THE INDUSTRY PARTNER Sunshine: • Initiator of project. • Pre-existing expertise in end-of-life care. Recognised: • Staff skill gap. • Client inability to self-determine manner of dying. • Opportunity for strategic positioning as national leader in end-of-life care.

14. THE PROJECT TEAM Chief investigators • Professor Roger Stancliffe. • Associate Professor Josephine Clayton: Northern Clinical School – University of Sydney; Staff Specialist Palliative Medicine - HammondCare. • Professor Sue Read: Professor of Learning Disability Nursing, Research Lead - Keele University, UK. Partner investigator • Gail Jeltes: General Manager Operations & Corporate Relations – Sunshine. Research associate • Michele Wiese.

15. Research Translation: Transition to Retirement Manual Sydney University Press DVD

16. Centre for Disability Research and Policy MENTAL HEALTH STREAM Prof. Stewart Einfeld Prof. Luis Salvador-Carulla Dr. Ana Fernandez

17. 1. Evidence-informed planning TITLE: The Mental Health Atlas of New South Wales AIMS: Map services, programs and interventions provided of two LHD (Western Sydney & Broken Hill) with DESDE-LTC and ICHI (interventions). AGENCY: NHMRC Partnership Third Round CHIEF INVESTIGATOR: Luis Salvador-Carulla PARTNER: MH Commission NSW STATUS: IN PREPARATION TITLE: The Mental Health Atlas of New Zealand AIMS: To map all the mental health services, programs and interventions in NZ PARTNER: The International Initiative for Mental Health Leadership ( T. Silvestri) CHIEF INVESTIGATOR: Luis Salvador-Carulla STATUS: IN PREPARATION (meeting in Wellington 12th December)

18. 1. Evidence-informed planning TITLE: Disability and health: people with disabilities and professionals’ views on access to health services in Western Sydney (including MH) AIMS: to explore the experiences of people with physical disability and service providers of accessibility to allied health services in Western Sydney. AGENCY: UWS research grant SUBMITTED: October 2013 CHIEF INVESTIGATOR: GisselleGallego OTHER INVESTIGATORS: L Salvador, A Dew, A Fernandez, M Lincoln BUDGET REQUESTED: $ 24,621 STATUS: SUBMITTED

19. 2. Mental Health & Intellectual Disabilities Public health approaches to preventing & improving MH problems in people with ID Title: Trial of “Secret Agent Society” program to improve social skills in schools for children with autism FUNDING: ARC LinkageCHIEF INVESTIGATOR: Stewart Einfeld et al LINKAGE PARTNER: Aspect NSWSTATUS: Data being analysed Title: Public Health trial of “Stepping Stones Triple P” training program for parents of children with developmental disabilities (and associated projects) LOCATION: Qld, NSW and Vic FUNDING: NHMRC ProgramCHIEF INVESTIGATOR: Stewart Einfeld, Pat Howlin, Jo Arciuli et al PARTNERS: UQ, Monash, UTS STATUS: In progress

20. 3. Arts, Mental Health and Disability TITLE: The electronic Art Research Toolkit for Mental Health planning (eART-MH): Development of an e-Tool for supporting decision-making in arts programs for people with mental health problems in New South Wales AIMS: To develop an e-Tool for improving research and decision-making in arts programs for people with mental health problems and psychosocial disabilities in NSW. AGENCY: NHMRC Partnership Second Round CHIEF INVESTIGATOR: Luis Salvador-Carulla OTHER INVESTIGATORS: C Rhodes (CIB), J Smith-Merry (CIC), A Rosen (AI) PARTNER: Richmond PRA BUDGET REQUESTED: $555,511 + $10,000 in cash and $771,700 in kind STATUS: SUBMITTED

21. 3. Arts, Mental Health and Disability(ii) TITLE: Arts as a participation strategy for people with disabilities AIMS: To increase the participation in social life of people with disabilities using Arts (Activities: Sydney Mental Health Arts Festival; scholarship grants for people with disabilities to study Arts; Photovoices as an action-research methodology) AGENCY: Balnaves Foundation SUBMITTED: CHIEF INVESTIGATOR: Luis Salvador-Carulla OTHER INVESTIGATORS: Colin Rhodes (Dean, Faculty of Arts) Morwena Collet (Australian Council for Arts) BUDGET REQUESTED: STATUS: IN PREPARATION

22. 4. International Cooperation • - US: Harvard School of Medicine • A/Prof Kerim Munir – March 2014 • - Research proposal for submission to the US National Institute of Mental Health (NIMH) on the new classification and taxonomy of Developmental Disorders (Autism and Intellectual Developmental Disorders) led by the CRDP • - Training program on Mental Health and Development Disorders for the University of Sydney and for Low and Medium Income Countries in the Asia-Pacific Region, based on the model developed by Kerim Munir and led by the CRDP, University of Sydney. • AGENCY: Australian Harvard ClubSUBMITTED: September 2013 • MEXICO: Public Health Institute • Dr E Lazcano – Dec. 2014 • - Intnl. comparison of health determinants & disabilities in health surveys • - CHILE: Centre for Interdisciplinary Ageing Research • EUROPEAN UNION: Refinement, Maratone, Roamer

23. SUMMARY Visit of Prof KerimMunir(sub Australian Harvard Club) New taxonomy of DD Mental Health Atlas of NSW (NHMRC partnership, in prep) Mental Health Care Gap for ID in NSW (ARC Linkage, in prep) Mental Health Atlas of New Zealand (in prep) eArt-MH tool ( MHMRC partnership,sub) “Secret Agent Society” (ARC Linkage, data analysis) “Stepping Stones Triple P” (NHMRC, in progress) Arts as a Participation Tool (Balnaves Foundation, in prep) Visit of Dr E Lazcano (Health surveys and ID)

24. The ICF and the NDIS work stream

25. Outline • Why the ICF • Current directions in health – and where the ICF fits • ICF use worldwide - overview • Future directions in measurement, Environmental Factors, NDIS

26. Health as a global notion WHO 1947: Health = Absence of disease Health = Complete physical, psychological, spiritual and social well being ‘… health is both a matter of how long one lives and how well one lives (i.e. one’s level of functioning)’ (Üstünet al 2003)

27. Body function & structure(Impairment) Activities (Limitation) Participation (Restriction) Environmental Factors Personal Factors ICF: Interaction of concepts Health Condition (disorder/disease) 27

28. Principles and features of the ICF ICF is interactive and probabilistic • Universality.Applicable to all people irrespective of health condition and in all physical, social and cultural contexts. The ICF concerns everyone’s functioning and disability, was not designed, nor should be used, to label persons with disabilities as a separate social group. • Parity - aetiological neutrality.There is not an explicit or implicit distinction between different health conditions, whether ‘mental’ or 'physical'. Knowing the health condition does not imply that disability is known. • Neutrality.Domain definitions are worded in neutral language, wherever possible, so that the classification can be used to record both the positive and negative aspects of functioning and disability. • Environmental Influence.The ICF includes environmental factors in recognition of the important role of environment in people’s functioning. Interaction with environmental factors – physical, social, attitudinal – is an essential aspect of the scientific understanding of functioning and disability.

29. WHO recommends using ICF and ICD together ICDMortality data Morbidity data ICFFunctioning and disability data ICD + ICF Health and health-related data

30. ICF application worldwide • Surveys – national and international • National data collections • Health measurement and assessment • Rehabilitation management, evaluation and casemix • Research into functioning and disability • Education of health professionals • Social security systems • Community care and support • Education systems: assessment and planning • World Report on Disability • Monitoring the UN Convention • Active WHO classification Network (WHO-FIC)

31. Current directions in health and disability • The context • Population growth and ageing • Increasing chronic disease • Advances in technology • Workforce shortages in many countries • Health inequalities • Some new directions • Person, family, community, environment • Maintenance of health, quality of life, participation and inclusion • Continuum of care (integrated approach) • Access by all • International recognition of potential value of CBR

32. Functioninga core concept for integrated services The person, their environment, the service system

33. CDRP - NDIS stream: Measurement of functioning • Australian searches for appropriate measures for NDIS and hospital pricing unsuccessful • Many tools unsuitable for large, diverse populations • Narrow in focus – to one condition or set of symptoms • Not covering all ICF components, domains • Proprietary • Around the world • Similar consideration occurring, in various countries, of generic ICF-based instruments, public good • Working with people in Medical Faculty (and we hope funders) • Collaborative action research to develop and test a generic ICF-based instrument • International reference group • Hope to advertise EOI for a Research Assistant in coming months

34. References and links Madden R, Ferreira M, Einfeld S, Emerson E, Manga R, Refshauge K, Llewellyn G 2012. New directions in health care and disability: the need for a shared understanding of human functioning. ANZJPH 2012;36;5:458-461 Madden RH, Fortune N, Cheeseman D, Mpofu E, Bundy A 2013. Fundamental questions before recording or measuring functioning and disability. Disability & Rehabilitation, 2013; 35(13): 1092–1096 UN Convention on the Rights of Persons with Disabilities http://www.un.org/disabilities/convention/about.shtml UstunTB, ChatterjeeS, Bickenbach J, Kostanjsek N, Schneider M 2003. The International Classification of Functioning, Disability and Health: a new tool for understanding disability and health. Disability & Rehabilitation, 2003: 25, 11–12, 565–571 WHO 2001: International Classification of Functioning, Disability and Health. Geneva: WHO.Searchable database at http://apps.who.int/classifications/icfbrowser/ World Health Organization and World Bank 2011. World Report on Disability. Geneva: WHO http://www.who.int/disabilities/world_report/2011/report/en/

35. Centre for Disability Research and Policywww.sydney.edu.au/health_sciences/cdrp/ Email: disabilitypolicy.centre@sydney.edu.auPhone: 61 2 9351 9721

36. Costs and Financing for the NDIS

37. National Disability Insurance Scheme Professor Richard Madden & Ros Madden Aims: • 1) Play a role in the development and implementation of the NDIS • Design issues e.g . interface with other systems • Impacts on specific population groups • Workforce • 2) Assessment issues, resource allocation and individual planning in relation to the NDIS • Measurement and data development

38. NDIS is essential and overdue • Rights of people with disabilities are paramount • Too many have no or inadequate support services • Families and carers need support • People will be able to purchase their own services • Disability services workers deserve proper recognition and pay • Disability services sector has to adapt

39. Outline • The costs of the NDIS • Financing • Possible sources of increased cost • Possible responses to contain costs • Needs of service providers

40. Costs of the NDIS: Productivity Commission • July 2011 • 410,000 expected participants • Annual net cost in 2018-19 (current dollars): • $5.0 – 8.0 billion, mid point $6.5 billion (P 779)

41. Costs of the NDIS: Australian Government Actuary • February 2012 • Amendments to PC costings: • Reduction in offsets ($500 million) • Allowance for SaCS award (February 2012) • Annual net cost: $6.5 – 7.0 billion before SaCS award allowance • Annual net cost: $7.5 billion after allowing for SaCS award

42. Costs of the NDIS: 2013 Commonwealth Budget • 460,000 expected participants • Full implementation by 1 July 2019 • No clear statement of full implementation net costs • $6.2 billion in new Commonwealth money in 2018-19 • A chart in Disability Care Australia May 2013 (part of the Budget papers) indicates new Commonwealth funding around $8 billion in 2019-20, the first full year of implementation

43. Financing • 0.5% levy on taxable incomes (extension of Medicare levy) • will raise $3.3 billion in 2014-15 • to be paid into a Disability Fund (hypothecated) • States receive 25% of this, for use in funding the NDIS • States are to transfer current funding progressively to the Commonwealth as they vacate disability services • Commonwealth share of the levy ($15.9 billion) will more than fund additional NDIS costs up to 2018-19 ($14.3 billion): Macklin et al press release, 1 May 2013 • From 2020-21 onwards, Disability Care Australia May 2013 shows NDIS is fully funded by levy and savings measures

44. Possible sources of increased cost • Bruce Bonyhady, Chairman, DisabilityCare Australia, 23 June 2013 • Ensure eligibility boundaries and reasonable and necessary supports are maintained and not widened • Complementary systems (health, education, aged care, employment, transport) must not shift costs to NDIS • Ensure a competitive market for disability service provision to contain service delivery costs University submission to Senate Committee on Community Affairs, February 2013 4. Uncertainty over individual funding: Assessments of entitlements is ‘bottom up’, with no priority setting mechanism; ‘reference packages’ of services are meant to contain cost, but mechanisms are unclear

45. Some options to contain costs • Keep States financially involved • Casemix development • Reform injury compensation

46. Keep States financially involved • Many of the complementary systems are State domains: health, education, housing • Therefore having States at least partially responsible for NDIS expenditure would reduce cost shifting incentives and permit more coordinated cross sector planning • People with complex needs require support from multiple sectors, so outcomes could be improved, as well as costs contained • Would also avoid the waste involved in dismantling State administration systems

47. Casemix funding • Well accepted for hospital in-patients • National health reform process built around National Efficient Prices (NEPs) for each casemix group • Each casemix group is largely determined by the characteristics of the patient, notably health conditions • As experience builds on costs for various assessment levels, a similar process, based on assessment of functioning rather than health conditions, could be developed for NDIS determination of the amount of funding for reasonable and necessary support • Specific circumstances (environment of the client) could be handled through additional payments

48. Reform injury compensation • Chapter 17 of the Productivity Commission systematically described the flaws of existing injury compensation systems, especially those based on fault: ‘a no fault system can deliver nearly 33% more services than the fault based system for the same price’ (P 847) • An NIIS would leave boundaries with the NDIS, and would not deal with the worst fault based systems such as medical indemnity • The NDIS has left state based compensation systems the first source of support for injured people: NDIS is a secondary scheme. • Possible reform steps: • (Ideal) Make NDIS the primary support scheme, with Cwlth/State financial adjustments • Work with States to eliminate fault based compensation, with savings dedicated to NDIS financing • Bar heads of damages for domains covered by NDIS

49. Financial impacts of NDIS for service providers • Existing service providers are NGOs, with limited sources of funding • The sector has strongly advocated for the NDIS, and supports it • NDIS will require service providers to sell services, needing good billing systems and substantial working capital • This will put great pressure on many service providers: opportunities for alliances on back office costs, marketing, branding, etc • Initial prices offered to NGOs are uneconomic • Could be exacerbated by new entrants to the sector

50. Conclusion • NDIS is a wonderful social development for Australia: • the Centre for Independent Studies sees the NDIS as ‘another Medicare’ (high praise from such a source): CIS Policy Monograph 131, 2012 • There are opportunities for creative approaches and further reform of related systems • Active examination of financial progress, and continuing policy development and reform, are essential so that the NDIS can achieve its potential.