Centre for Disability Research and Policy
CENTRE FOR
DISABILITY RESEARCH
AND POLICY
FACULTY OF
HEALTH SCIENCES
1
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.
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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
4
Centre arrangement
Management
Committee Chair:
Professor Archie
Johnson and Professor
Kathryn Refshauge
Centre Director
Gwynnyth Llewellyn
Disability and
Disadvantage
Disability and
Development
Disability and Mental
Health
Disability Services
National Disability
Insurance Scheme
Eric Emerson
Gwynnyth Llewellyn &
Ros Madden
Stewart Einfeld & Luis
Salvador-Carulla
Roger Stancliffe
Richard Madden &
Ros Madden
5
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)
6
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/leftbehind2.shtml
Submissions
http://sydney.edu.au/health-sciences/cdrp/publications/submissions.shtml
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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
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Email: gwynnyth.llewellyn@sydney.edu.au
Centre for Disability Research and Policy
www.sydney.edu.au/health_sciences/cdrp/
Email: disabilitypolicy.centre@sydney.edu.au
Phone: 61 2 9351 9721
CDRP Disability Services Stream
Faculty Forum, 24th October, 2013
CENTRE FOR
DISABILITY RESEARCH
AND POLICY
Professor Roger Stancliffe
FACULTY OF
HEALTH SCIENCES
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.
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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.
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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 endof-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
15
Centre for Disability Research and Policy
MENTAL HEALTH STREAM
Prof. Stewart Einfeld
Prof. Luis Salvador-Carulla
Dr. Ana Fernandez
CENTRE FOR
DISABILITY RESEARCH
AND POLICY
FACULTY OF
HEALTH SCIENCES
16
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)
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
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
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
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:
BUDGET REQUESTED:
STATUS: IN PREPARATION
Colin Rhodes (Dean, Faculty of Arts)
Morwena Collet (Australian Council for Arts)
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 AsiaPacific 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 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
SUMMARY
ATLAS OF MH
SERVICES
(visualization tools and
other support decision
systems)
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)
PUBLIC HEALTH
APPROACHES TO
PREVENTING AND
IMPROVING MENTAL
HEALTH PROBLEMS
OF PEOPLE WITH ID
“Secret Agent
Society” (ARC
Linkage, data analysis)
“Stepping Stones
Triple P” (NHMRC, in
progress)
ARTS , MENTAL
HEALTH AND
DISABILITY
(Sydney Mental Health
Festival; Scholarship
Grants…)
eArt-MH tool
( MHMRC
partnership,sub)
Arts as a
Participation Tool
(Balnaves
Foundation, in prep)
TAXONOMIES
( Intellectual
Disabilities; Scientific
Knowledge; Health
Interventions…)
Visit of Prof Kerim
Munir (sub Australian
Harvard Club) New
taxonomy of DD
Visit of Dr E Lazcano
(Health surveys and ID)
The ICF and the NDIS work stream
CENTRE FOR
DISABILITY RESEARCH
AND POLICY
FACULTY OF
HEALTH SCIENCES
24
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 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)
Health = Complete physical,
psychological, spiritual and social
well being
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ICF: Interaction of concepts
Health Condition
(disorder/disease)
Body function &
structure
(Impairment)
Activities
(Limitation)
Environmental
Factors
Participation
(Restriction)
Personal
Factors
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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.
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WHO recommends using
ICF and ICD together
ICD
Mortality data
Morbidity data
ICF
Functioning and disability data
ICD + ICF
Health and health-related data
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ICF application worldwide
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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
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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
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Functioning a core concept for integrated services
The person, their environment, the service system
Family
Multiple
health
services
Person in
environment,
community
Disability
services
Other
services
and
equipment
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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–
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/
34
Centre for Disability Research and Policy
www.sydney.edu.au/health_sciences/cdrp/
Email: disabilitypolicy.centre@sydney.edu.au
Phone: 61 2 9351 9721
Costs and Financing for the NDIS
CENTRE FOR
DISABILITY RESEARCH
AND POLICY
FACULTY OF
HEALTH SCIENCES
36
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
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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
38
Outline
› The costs of the NDIS
› Financing
› Possible sources of increased cost
› Possible responses to contain costs
› Needs of service providers
39
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)
40
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
41
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
42
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
43
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
47
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
48
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.
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Disability and Development Work
Stream
Faculty Forum 24th October 2013
CENTRE FOR
DISABILITY RESEARCH
AND POLICY
FACULTY OF
HEALTH SCIENCES
Gwynnyth Llewellyn and Ros Madden
Development and Disability
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Disability and Development
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
52
Current funded research
Four themes
Disability Policy
Building capacity in disability rights based policy
Llewellyn, Madden, Gargett
Funded 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
53
Disability and Development
Themes continued
CBR and evidence
CBR monitoring toolkit and menu
Madden, Lukersmith, Hartley, Millington, Scarf, Llewellyn, Gargett
Funded by AusAID ALAF scheme in 2011 -Vietnam, Lao PDR and Philippines
Funded by AusAID ALAF scheme in 2013 – Solomons, PNG, Timor Leste, Fiji
Funded by CBM 2013
Livelihood
University-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
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Email: gwynnyth.llewellyn@sydney.edu.au
ros.madden@sydney.edu.au
Centre for Disability Research and Policy
www.sydney.edu.au/health_sciences/cdrp/
Email: disabilitypolicy.centre@sydney.edu.au