FACULTY OF HEALTH SCIENCES

CENTRE FOR DISABILITY RESEARCH AND POLICY

Centre for Disability Research and Policy

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The Centre Vision

VisionA better life for people with disabilities in Australia and abroadFocusThe social and economic participation of people with disabilities and their

health and well-being over the life courseOur contributionWe 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.

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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”.

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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

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Centre arrangement

Management Committee Chair: Professor Archie

Johnson and Professor Kathryn Refshauge Centre Director

Gwynnyth Llewellyn

National Disability Insurance Scheme

Richard Madden & Ros Madden

Disability Services

Roger Stancliffe

Disability and Mental Health

Stewart Einfeld & Luis Salvador-Carulla

Disability and Development

Gwynnyth Llewellyn & Ros Madden

Disability and Disadvantage

Eric Emerson

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Internal Organization

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 SupportSylvia Lohrengel as RGA (shared with FRG)

Work Plans and personnel

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Influencing Policy

Eventshttp://sydney.edu.au/health-sciences/cdrp/events/past-events.shtml

Policy Bulletinshttp://sydney.edu.au/health-sciences/cdrp/publications.shtmlhttp://sydney.edu.au/health-sciences/cdrp/publications/policy-bulletins.shtml

Technical Working Papershttp://sydney.edu.au/health-sciences/cdrp/publications/technical-reports/left-behind2.s

html

Submissionshttp://sydney.edu.au/health-sciences/cdrp/publications/submissions.shtml

Events, Policy Bulletins, Submissions and Relationships with State and Federal governments

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Cross Centre Projects

Strong relationships with NGOs and DPOs As members of Management CommitteeAs members of Research Teams As members of Advisory Committees

Audit of Disability Research in AustraliaFunded by Disability Policy and Research Working Party

Australian cross – jurisdictional Developed National Disability Research and Development Agenda, 2011Funded CDRP to undertake the audit – which is at mid term point with end date April

2014Recommend gaps in evidence base and provide comprehensive data base of

disability research in Australia

Relationships with sector and grants

Email: gwynnyth.llewellyn@sydney.edu.au

Centre for Disability Research and Policywww.sydney.edu.au/health_sciences/cdrp/

Email: disabilitypolicy.centre@sydney.edu.auPhone: 61 2 9351 9721

FACULTY OF HEALTH SCIENCES

CENTRE FOR DISABILITY RESEARCH AND POLICY

CDRP Disability Services StreamFaculty Forum, 24th October, 2013

Professor Roger Stancliffe

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LINKAGE PROJECT – 2013 to 2016

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.

A toolkit to build the capacity of disability staff to assist adults with intellectual disability to understand and plan for their end of life

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THE PROJECT

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.

“A toolkit to build the capacity of disability staff to assist adults with intellectual disability to understand and plan for their end of life”

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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.

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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.

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Research Translation: Transition to Retirement

Manual Sydney University Press DVD

FACULTY OF HEALTH SCIENCES

CENTRE FOR DISABILITY RESEARCH AND POLICY

Centre for Disability Research and Policy

MENTAL HEALTH STREAM

Prof. Stewart Einfeld Prof. Luis Salvador-Carulla

Dr. Ana Fernandez

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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)

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: Gisselle Gallego

OTHER INVESTIGATORS: L Salvador, A Dew, A Fernandez, M Lincoln

BUDGET REQUESTED: $ 24,621

STATUS: SUBMITTED

1. Evidence-informed planning

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 Linkage CHIEF INVESTIGATOR: Stewart Einfeld et al

LINKAGE PARTNER: Aspect NSW STATUS: 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 Program CHIEF INVESTIGATOR: Stewart Einfeld, Pat Howlin, Jo Arciuli et al

PARTNERS: UQ, Monash, UTS STATUS: In progress

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

3. Arts, Mental Health and Disability

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

3. Arts, Mental Health and Disability(ii)

- 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 Club SUBMITTED: September 2013

-MEXICO: Public Health InstituteDr E Lazcano – Dec. 2014 - Intnl. comparison of health determinants & disabilities in health surveys

- CHILE: Centre for Interdisciplinary Ageing Research

-EUROPEAN UNION: Refinement, Maratone, Roamer

4. International Cooperation

SUMMARY

ATLAS OF MH SERVICES

(visualization tools and other support decision

systems)

PUBLIC HEALTH APPROACHES TO PREVENTING AND

IMPROVING MENTAL HEALTH PROBLEMS OF PEOPLE WITH ID

ARTS , MENTAL HEALTH AND DISABILITY

(Sydney Mental Health Festival; Scholarship

Grants…)

TAXONOMIES( Intellectual

Disabilities; Scientific Knowledge; Health Interventions…)

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)

Arts as a Participation Tool (Balnaves Foundation, in prep)

Visit of Prof Kerim Munir (sub Australian Harvard Club) New taxonomy of DD

Visit of Dr E Lazcano (Health surveys and ID)

“Secret Agent Society” (ARC Linkage, data analysis)“Stepping Stones Triple P” (NHMRC, in progress)

FACULTY OF HEALTH SCIENCES

CENTRE FOR DISABILITY RESEARCH AND POLICY

The ICF and the NDIS work stream

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Outline

1. Why the ICF

2. Current directions in health – and where the ICF fits

3. ICF use worldwide - overview

4. Future directions in measurement, Environmental Factors, NDIS

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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)’

(Üstün et al 2003)

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Health Condition (disorder/disease)

ICF: Interaction of concepts

Environmental Factors

Personal Factors

Body function & structure

(Impairment)

Activities(Limitation)

Participation(Restriction)

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Principles and features of the ICF

› 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.

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ICF is interactive and probabilistic

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ICD Mortality data

Morbidity data

ICF Functioning and disability data

ICD + ICF

Health and health-related data

WHO recommends using ICF and ICD together

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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)

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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

Functioning a core concept for integrated services

Person in environment, community

Family

Disability services

Other services

and equipment

Multiple health

services

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The person, their environment, the service system

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

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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

Ustun TB, Chatterjee S, 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, 565–571WHO 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/

Centre for Disability Research and Policywww.sydney.edu.au/health_sciences/cdrp/

Email: disabilitypolicy.centre@sydney.edu.auPhone: 61 2 9351 9721

FACULTY OF HEALTH SCIENCES

CENTRE FOR DISABILITY RESEARCH AND POLICY

Costs and Financing for the NDIS

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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

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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

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Outline

› The costs of the NDIS

› Financing

› Possible sources of increased cost

› Possible responses to contain costs

› Needs of service providers

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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)

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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

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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

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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

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Possible sources of increased cost

› Bruce Bonyhady, Chairman, DisabilityCare Australia, 23 June 2013

1. Ensure eligibility boundaries and reasonable and necessary supports are maintained and not widened

2. Complementary systems (health, education, aged care, employment, transport) must not shift costs to NDIS

3. 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

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Some options to contain costs

› Keep States financially involved

› Casemix development

› Reform injury compensation

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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

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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

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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

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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

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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.

FACULTY OF HEALTH SCIENCES

CENTRE FOR DISABILITY RESEARCH AND POLICY

Disability and Development Work StreamFaculty Forum 24th October 2013

Development and DisabilityGwynnyth Llewellyn and Ros Madden

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Professor Gwynnyth Llewellyn & Ros Madden

The questions we want to answer How do we prevent and respond to the disability consequences of diseases such as

diabetes and heart disease, road accidents, natural disasters, diet and substance abuse?

What models can we develop to support and empower people with disabilities in both community and specialist services?

How can we make these models accessible to policy makers in those countries?What is the experience of people with disabilities of institutional and community-based

rehabilitation? What are the respective benefits

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Current funded research

Disability PolicyBuilding capacity in disability rights based policy Llewellyn, Madden, GargettFunded by AusAID February – March 2013 23 Fellows from 8 South East Asian countries

Disaster risk reduction Overcoming exclusion of people with disability from disaster management in

Indonesia (Llewellyn, Wilson, Black and ASB Indonesia and including Charlotte Scarf and Michelle Villeneuve)

Funded by AusAID under ADRA Scheme 2013-2015

Four themes

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Disability and Development

CBR and evidenceCBR monitoring toolkit and menu Madden, Lukersmith, Hartley, Millington, Scarf, Llewellyn, GargettFunded by AusAID ALAF scheme in 2011 -Vietnam, Lao PDR and PhilippinesFunded by AusAID ALAF scheme in 2013 – Solomons, PNG, Timor Leste, FijiFunded by CBM 2013

LivelihoodUniversity-led entrepreneurship training targeting women and people with

disabilities: Catalyzing entrepreneurial communities across ASEAN Seymour, Llewellyn, Baird, Toth and Gargett ALAF funded, LIFT funded in Myanmar and Australia Award and DFAT

applications pending

Themes continued

Email: gwynnyth.llewellyn@sydney.edu.auros.madden@sydney.edu.au

Centre for Disability Research and Policywww.sydney.edu.au/health_sciences/cdrp/

Email: disabilitypolicy.centre@sydney.edu.au