Australian Government

 Productivity Commission Inquiry: 
Disability Care and Support

Submission to the Inquiry 
by 
Physical Disability Council of NSW 
August 2010 

Jordana Goodman (Policy Officer) 
Physical Disability Council of NSW 
3/184 Glebe Point Road, GLEBE NSW 2037 
Freecall: 1800 688 831 Phone: 02 9552 1606 
Web: www.pdcnsw.org.au 

About the Physical Disability Council of NSW 

The Physical Disability Council of NSW (PDCN) is the peak body representing people with physical disabilities across New South Wales. This includes people with a range of physical disability issues, from young children and their representatives to aged people, who are from a wide range of socio-economic circumstances and live in metropolitan, rural and regional areas of NSW. The objectives of PDCN are: 

•	To educate, inform and assist people with physical disabilities in NSW about the range of services, structure and programs available that enable their full participation, equality of opportunity and equality of citizenship.
•	To develop the capacity of people with physical disability in NSW to identify their own goals, and the confidence to develop a pathway to achieving their goals (ie self advocate). 
•	To educate and inform stakeholders (ie about the needs of people with a physical disability) so they are able to achieve and maintain full participation, equality of opportunity and equality of citizenship. 

Executive Summary
The Physical Disability Council of NSW (PDCN) would like to thank the Productivity Commission for this opportunity to provide feedback as part of the Public Inquiry: Disability Care and Support
•	PDCN believes that an entitlement based personalised support scheme that provided a range of mechanisms that has a consumer focus, is person-centred; and promotes independent living would be beneficial. 

•	With the implementation of a national disability insurance scheme subsidised community based services need to be made available for people who may not be eligible for a national disability insurance scheme.

•	In principal, PDCN supports the recommendations identified by the Disability Investment Group and has included them as Appendix One of this submission.  It was unclear to PDCN why a number of significant recommendations proposed by the Disability Investment Group (DIG), where not identified in the Australian Government- Productivity Commission (2010) Issues Paper- Disability Care and Support. 

Terms of Reference
The terms of reference for the Productivity Commission’s inquiry into a national disability long-term care and support scheme is available as Appendix Two of this submission.

Discussion
The Productivity Commission’s Issue Paper identified the following issues relevant to the framework for an entitlement based individualised support scheme, and this submission will focus on comment related to these issues: 
•	Background information
•	Eligibility criteria
•	Relationship between eligibility and income or assets
•	Inconsistencies, duplication and inefficiencies
•	Financial, legal and administrative responsibilities

Background information
The literature review suggests that good approaches to individual funding adopt principles about consumer preferences including consumer driven, person-centred support; facilitating independent living in the community; and flexibility in the way support is organised.

Self-directed services and personal budgets can be responsive to user demand. They can shift away from inflexible, centralised, building- based services, such as day care centres and group homes, towards more flexible, informal and decentralised provision, often organised around a person’s home in their community.

Eligibility criteria: Disability not acquired as part of the natural process of ageing 
From July 2011, the COAG reforms to the HACC program and funding arrangements for older people, people with disability and carers will apply.  The Commonwealth will pay for all specialist disability services under the National Disability Agreement to people aged 65+ and Aboriginal people aged 50+ years.  The states and territories will provide: funding & program responsibility for basic community care services for eligible people under 65 years; and funding for packaged community care & residential aged care delivered via Commonwealth aged care programs to eligible people under 65 years.  

PDCN believes that any future support scheme needs to be based on the support needs at whatever age of the person. International studies have recognised that: ‘This means thinking about a person’s life story, from conception to death. And it means all aspects of life: education, work, friendship, leisure, faith and community’.  

Research from Miami University on consumer- directed home services provides evidence that people with disabilities, regardless of their age, prefer to select the most appropriate services that meet their individual needs. Their findings include a survey about consumer- directed home services, with findings about what stakeholders perceived as the advantages and disadvantages of these services. 

‘While all stakeholders acknowledged the importance of consumer direction in strengthening consumer choice and responsibility, there were some interesting variations among the five groups of respondents. Not surprisingly, consumers and caregivers cited more consumer-oriented advantages to consumer direction, including that it “enhances control over service decisions”; “increases choices”; “enhances flexibility and responsiveness to [consumer/caregiver] needs”; “increases independence”; “increases empowerment”; and “improved quality of life.” 

PDCN believes that to ensure quality service, it is fundamental that the following five principles be applied whenever providing services: 

•	Service delivery needs to be person- centred, to ensure that each service user has the opportunity to explore individual strengths and goals, and work towards achieving the outcomes they desire, with the security of support if needed.
•	Culturally-appropriate, socially inclusive, with an understanding of individual situations, social circumstances and relationships, enabling the service user to continue with what is important to them.
•	Flexible and responsive to a range of changing needs, interests and choice of service users. 
•	Supportive and enable the positive relationship between service users and carers. 
•	Recognition as a fundamental and valued part of society that grows and develops to meet the changing expectations of service user, carers, funders and the workforce. 

Eligibility criteria: Support for people with severe and profound disability
It is understood that calculations in the PricewaterhouseCoopers- National Disability Insurance Scheme report focus on the costs of long-term care and support for people with ‘major disabilities’  This appears to have been interpreted by the Disability Investment Group (DIG) as meaning those people with either severe or profound disability, and hence negating needs for other people with disability. 

The Issues Paper does not make it clear whether governments will still fund community based services for people unable to access the national disability insurance scheme.  PDCN believes that not only people with severe or profound disabilities may need support. To ensure equity amongst all levels and types of disability, it may be helpful for a national disability insurance scheme to adopt eligibility criteria similarly to the definition of disability used in the Disability Discrimination Act (Cth) 1992 where a broad definition is used to ensure that everyone with a disability is protected: physical , intellectual, psychiatric, sensory, neurological, and learning disabilities, as well as physical disfigurement, and the presence in the body of disease-causing organisms. 

The costs identified by the DIG included provision of care and support including aids, equipment, transport, respite, accommodation support and a range of community and day programs. Based on the eligibility defined by the DIG, it has been estimated that there were around 580 000 people aged less than 65 years in 2009 with severe or profound disability using the Australian Institute of Health and Welfare AIHW Burden of Disease data. Of these, there were: 
•	40 000 people with constant support needs — people in establishments other than nursing homes or people who cannot be left alone for one hour 
•	104 000 people with frequent support needs. These need assistance with at least one core activity at least three times a day and/or cannot be left alone for more than a few hours 
•	32 000 people with regular support needs, who need assistance with at least one core activity one or two times a day 
•	86 000 people classified with a profound disability who had lower support needs 
•	316 000 people classified with a severe disability who had lower support needs. 

Based on this data it is estimated to cost $10.8 billion per annum. Given that around $5.6 billion was already provided by existing programs, the implied level of unmet needs would be around $5.2 billion in 2009. 

It concerns PDCN that financial estimates for a national disability insurance scheme may have been determined on the assumption of the availability of a carer. Whilst PDCN recognises the valued contribution of many carers, particularly for children with disabilities, it must be reinforced that for all service provision, one must recognise the inherent needs of the individual receiving the service.
PDCN recognises the difficulties in obtaining accurate data that incorporates functionality and complies with the framework of the International Classification of Functioning, Disability and Health (ICF- 10).  However, PDCN recognises the interface between body function and structure with participation in all societal domains.  PDCN believes that medically based terms such as ‘severe and profound’ disability, as defined in the Survey of Disability Ageing and Carers (SDAC), fail to consider the interaction between the type of disability, personal attributes and his or her environment. PDCN is also concerned that data obtained from the Australian Burden of Disease study (BoD) focuses on the risk of death, rather than identifying the long-term support needs of a lifelong disability. Consequently PDCN would like to support feedback provided the report prepared by Pricewaterhouse Coopers for the national disability insurance scheme that:-

‘The use of either of these data sources individually is problematic, and a planning and data approach needs to be developed over time within the framework of the International Classification of Functioning, Disability and Health (ICF).’  

PDCN recommends that data be used based on the amount of care required and the type of care needed. The following tables identify three different levels of care by the type care required, based on the ability to complete Activities of Daily Living, such as that used in the German LTC insurance scheme: 

Table 1-  Care levels and care needs 	
  	Care Level I 	Care Level II 	Care Level III 	
Help with personal care, nutrition or mobility 	At least once a day for at least two tasks in one or more areas 	At least three times a day at different times of the day 	Assistance around the clock 	
Additional assistance 	Several times a week in taking care of the household 	  	  	
Nursing staff needs 	At least 1.5 hours/day on average 	At least 3 hours/day on average 	At least 5 hours/day on average 	

Table 2 Activities of Daily Living (ADL)	
ADLs 	Additional ADLs 	
Washing 	Shopping 	
Bathing 	Preparing meals 	
Brushing teeth 	Cleaning 	
Combing 	Washing up the dishes 	
Shaving 	Laundering 	
Toileting 	Heating the apartment 	
Eating 	  	
Getting in and out of bed 	  	
Dressing 	  	
Walking 	  	
Standing 	  	
Using stairs 	  	
Walking outdoors 	  	

Relationship between eligibility and income or assets
 Neither ‘The Way Forward- A New Disability Policy Framework for Australia’ or the Pricewaterhouse Coopers; ‘National Disability Insurance Scheme,’ identify a fee policy for users of the scheme, but further clarification on this subject is sought in the Issues Paper. 
The Issues Paper indicates that ‘No nation offers a public long-term care program that provides an unlimited entitlement to services without a strategy for managing costs’.  The selection criteria identified in the Issues Paper already restricts eligibility by only including people with severe to profound disabilities, and for people less than 65 years.  Consequently, PDCN believes that any other restrictive measure such as a charge or co-payment will only act as a further impediment, and should not be considered as a source of potential income for the national disability insurance scheme.  
PDCN is concerned that the introduction of a charge or co-payment will severely jeopardise the weekly earnings of people with physical disability and prevent them from utilising the national disability insurance scheme. When considering the impact of a fee for service, this needs to be considered in the light that in 2003, the median gross personal income per week of people aged 15–64 years with a reported disability living in households was $255, compared with $501 for people without disability. Median gross personal income per week decreased with increasing severity of disability, being lowest ($200 per week) for people with a profound core activity limitation.  

Inconsistencies, Duplication and Inefficiencies
As outlined in the Issues Paper, a national disability insurance scheme would include a package of care services, which will include accommodation support, aids and equipment, respite, transport and a range of community participation and day programs throughout a person’s lifetime. It is assumed that ‘community participation and day programs’ includes both community access services including the following service types; day services, learning and life skills development, recreation and holiday programs, and community support services, including the following service types; case management, regional resource and support teams, counseling, early childhood intervention services and other therapy support services.

The Issues Paper also makes comment that a well functioning disability care and support system would include at a minimum; personal care services, respite and accommodation services, community access, community support, income support, employment, transport, aids and appliances, home modification, but also a range of intangible services, such as counseling and mentoring.  PDCN assumes that income support and employment services have not been included in the proposed national disability insurance scheme as these services are a Commonwealth Government responsibility, and that provision of aids and appliances, home modification, counseling and mentoring would be part of the community participation programs. In a submission prepared by Disability Advocacy Network Australia (DANA) for the National Disability Strategy (2008) it is recommended that:

‘Independent advocacy must take a number of forms if it is to effectively play its part in realising the human rights of persons with disability. Individual advocacy is essential to secure the rights of individuals with disability and is the foundation of any comprehensive advocacy system. However, it is futile to invest in individual advocacy without also investing in systemic advocacy that will identify and pursue resolution of the structural issues that give rise to recurring human right violations’.  
In support of this recommendation PDCN believes that individual and systematic advocacy services need to be considered when establishing a national disability insurance scheme, but with a capacity to be independent of service providers and funding authorities. Additionally PDCN would also recommend a similar structure for a complaints and disputes authority.
Inconsistency in program policies and legislation with different government jurisdictions resulting in different priorities and interpretation regarding eligibility and assessment, and duplication and inefficiencies in running multiple schemes have been identified in the Issues Paper as potential risks to the viability of such a long-term support scheme. The  impact of these risks are  illustrated in the provision of aids and equipment for people with disabilities, where similar type programs are operated quite differently across Australia, with differences in eligibility, priorities and wait times, availability of different aids and equipment, charges and co-payments. On an even smaller scale within NSW, a review conducted in 2006 by Pricewaterhouse Coopers illustrated the operational differences between different Area Health Services of NSW. 
Consequently, PDCN believes it is necessary for the Commonwealth to adopt a strong leadership role whilst implementing and in reviewing a national disability insurance scheme. This would help prevent differences in the interpretation and implementation of the insurance scheme across states and territories that may jeopardize the long term viability of the NDIS 
In contrast to its universalist view on the interpretation of the national disability insurance scheme, PDCN has a more pluralist view on the delivery of services available under the scheme.  PDCN understands that having more than one service provider offering the service, provides greater choice of services or programs to the service user. This reflects its belief that a uniform interpretation of a national disability insurance scheme will help ensure greater equality and create a system that better responds to the needs of the individual. 

Financial, legal and administrative responsibilities
Strategies implemented by the Victorian Department of Human Services have been used to demonstrate mechanisms used to minimise potential risk to service users and governments while developing an individualised funding program.

Since the adoption of the Victorian Charter of Human Rights and Responsibilities 2006 and the Victorian Disability Act 2006, a legislative framework has been established for a whole-of-government and whole-of-community approach, guided by principles of human rights and citizenship, enabling people with a disability to more actively participate in community life. This legislation underpins self-directed approaches by specifying the requirement for individualised, flexible responses, maximising choice and acknowledging the role of families and support networks. The framework is based on the following principles:
•	Self-determination.  People with a disability, their family and support networks actively participating in making decisions that affect their lives.
•	Choice. People with a disability, their family and support networks actively expressing their views and preferences about decisions that are made in meeting their goals, lifestyle choices and aspirations.
•	Inclusion. People with a disability, their family and support networks are embraced as belonging, sharing responsibility, contributing to and adding value. 
•	Transparency. Resources are allocated to people with a disability, or their family and support networks where appropriate, based on the individual’s needs, goals and aspirations in a fair and open way.
•	Accessibility. Information, policies and processes are clear and understandable to maximise the person and their family and support networks’ ability to take control of their own support.
•	Citizenship. People with a disability, as members of the community, exercise their equal rights and responsibilities. 

Over the past ten years Victoria has conducted a number of pilot programs; HomeFirst, Support and Choice and Community Options/Futures for Young Adults Years 1-8, and adopted legislation and policies aimed at providing individual support, planning and funding. These pilot programs have been used as a basis of the now available Individual Support Package. These packages provide individuals with the choice of either of the following funding administrative arrangements: Direct payments; Financial intermediary; Disability service provider ; or, a combination of these arrangements. In a recent review into the effectiveness of indvidualised funding approaches to disability support findings identified that:

‘Most people using individual funding experienced personal wellbeing, physical and mental health at levels similar to both the Australian population norm and the Victoria norm of people with intellectual disabilities. In the interviews, they attributed these positive results to the better control they have over the way they organise their disability support’. 

Strategies identified in the guidelines to minimise potential risk have been documented in Appendix Three of this submission.  Effective approaches to individual funding address three aspects of administrative systems to manage the disability support responsibilities. These are the management structures to organise the support; accountability requirements for the public funding; and legal mechanisms to facilitate the funding option without disadvantaging the person financially. 

Internationally a wide variety of mechanisms have been developed to implement individualised funding and assist people with the responsibility it imposes. These include service brokers, personal agents, fiscal intermediaries, and voucher mechanisms, to assist with budgeting, selecting services, managing agents and accountability.

When considering the risks associated with individualised funding within Australia, the following findings have been identified:
•	States and territories have put accountability requirements in place that reduce the risk to government, and to some extent to clients, of improper use of individual funding.
•	Service providers generally feel that existing mechanisms are effective in protecting both agency and clients.
•	However, some government accountability processes and legal requirements are cumbersome and expensive, especially occupational health and safety and insurance regulations.
•	Service providers play an important role in assisting people to manage their funds, through mechanisms such as providing information and training to clients.
•	Examples of abuse exist; however, these are effectively managed by auditing processes and close observation.
•	Some people with disabilities receiving direct payments lack the necessary administrative support.
•	Legislative change might be required to clarify the impact of direct funding on income support and taxable income to facilitate greater access by people with disabilities. 

Appendix One:    Disability Investment Group: recommendations

Recommendation 1- DIG recommends that the Commonwealth Government, in consultation with States and Territories, immediately commission a comprehensive feasibility study into a National Disability Insurance Scheme (NDIS).
The scheme would:
•	be designed to meet existing, unmet and future needs of people with severe or profound disability for life, where disability is acquired before age 65; 
•	replace and enhance current arrangements for funding and providing disability services; 
•	be based on a social insurance model and fund a basic level of personal care and support for life; 
•	be administered by a new statutory authority with a robust prudential governance structure; 
•	be funded from general revenue or a Medicare-like levy, in recognition of the shared public risk of disability; and 
•	have a staged implementation over 7 to 10 years to allow for the development of the necessary infrastructure and workforce.
The feasibility study should also consider:
•	how State and Territory accident insurance schemes should interact with the proposed national scheme and move to providing nationally-consistent, no-fault insurance for traumatically injured people; and 
•	the potential to enhance additional private provision for people with disability by making a NDIS the centrepiece of a new three pillar disability policy framework.
The DIG also recommends that any work commissioned on the feasibility of Medicare Select should align with work on the feasibility study of a NDIS.
Recommendation 2- DIG recommends that the feasibility study into a National Disability Insurance Scheme includes further examination of the potential for any of the following measures to enhance additional private provision for people with disability.
•	Action on the recommendations of the Senate Standing Committee on Community Affairs in its report on Special Disability Trusts, Building trust: Supporting families through Disability Trusts, October 2008. 
•	Setting up a savings plan with incentives for family members to save for the short- to medium-term financial needs of a family member with disability. 
•	Removing taxes on essential goods and services required by people with disability, their families and carers. 
•	Introducing a Disability Support Tax Rebate into Australia’s tax system to recognise the work-related costs of people with disability, their families and carers. 
•	Development of private housing and services models that could complement a NDIS.
This would require consultation with other parts of government, including importantly, the Review into Australia’s Future Tax System.
Recommendation 3- DIG recommends that regulations for accessible and adaptable housing standards be strengthened to facilitate ageing in place; and as a first step, a set of no-cost and low-cost requirements be mandatory for all new residential buildings.
Recommendation 4- DIG recommends that the National Rental Affordability Scheme (NRAS) be amended to better meet the needs of people with disability by: 
•	increasing the payment made in relation to housing for people with disability to recognise the higher costs of providing and servicing their housing (NRAS Plus); and 
•	setting minimum adaptability and accessibility standards at least equal to the no-cost or low-cost standards in Recommendation 3.
Recommendation 5- DIG recommends a change of focus for Disability Employment Services (formerly Disability Employment Network) to direct candidates with disability into the mainstream employment market, rather than act as employment agencies in their own right; and to ensure that services are appropriately targeted and delivered in a way that the private sector will access them.
DIG also recommends that access to funded services in the Disability Employment Services be available to people in Australian Disability Enterprises who want to take up employment in the open labour market.
Recommendation 6- DIG recommends that the Commonwealth and State and Territory Governments allocate $30 million per annum under the new National Disability Agreement to fund a National Disability Research Institute as a centre of excellence to lead and promote disability research in Australia. The National Disability Insurance Scheme would be expected to maintain and expand this research. 

Appendix Two:    Terms of Reference

The Productivity Commission is requested to undertake an inquiry into a National Disability Long-term Care and Support Scheme. The inquiry should assess the costs, cost effectiveness, benefits, and feasibility of an approach which:
•	Provides long-term essential care and support for eligible people with a severe or profound disability, on an entitlement basis and taking account the desired outcomes for each person over a lifetime 
•	Is intended to cover people with disability not acquired as part of the natural process of ageing 
•	Calculates and manages the costs of long-term care and support for people with severe and profound disability 
•	Replaces the existing system funding for the eligible population 
•	Ensures a range of support options is available, including individualised approaches 
•	Includes a coordinated package of care services which could include accommodation support, aids and equipment, respite, transport and a range of community participation and day programs available for a person's lifetime 
•	Assists the person with disability to make decisions about their support 
•	Provides support for people to participate in employment where possible. 
In undertaking the inquiry, the Commission is to:
1.	Examine a range of options and approaches, including international examples, for the provision of long-term care and support for people with severe or profound disability. 
The Commission is to include an examination of a social insurance model on a no-fault basis, reflecting the shared risk of disability across the population. The Commission should also examine other options that provide incentives to focus investment on early intervention, as an adjunct to, or substitute for, an insurance model.
2.	The Commission is to consider the following specific design issues of any proposed scheme: 
•	Eligibility criteria for the scheme, including appropriate age limits, assessment and review processes 
•	Coverage and entitlements (benefits) 
•	The choice of care providers including from the public, private and not-for-profit sectors 
•	Contribution of, and impact on, informal care 
•	The implications for the health and aged care systems 
•	The interaction with, or inclusion of, employment services and income support 
•	Where appropriate, the interaction with: 
•	National and state-based traumatic injury schemes, with particular consideration of the implications for existing compensation arrangements 
•	Medical indemnity insurance schemes. 
3.	Consider governance and administrative arrangements for any proposed scheme including: 
•	The governance model for overseeing a scheme and prudential arrangements 
•	Administrative arrangements, including consideration of national, state and/or regional administrative models 
•	Implications for Commonwealth and State and Territory responsibilities 
•	The legislative basis for a scheme including consideration of head of power 
•	Appeal and review processes for scheme claimants and participants. 
4.	Consider costs and financing of any proposed scheme, including: 
•	The costs in the transition phase and when fully operational, considering the likely demand for, and utilisation under different demographic and economic assumptions 
•	The likely offsets and/or cost pressures on government expenditure in other systems as a result of a scheme including income support, health, aged care, disability support system, judicial and crisis accommodation systems 
•	Models for financing including: general revenue; hypothecated levy on personal taxation, a future fund approach with investment guidelines to generate income 
•	Contributions of Commonwealth and State and Territory governments 
•	Options for private contributions including copayments, fees or contributions to enhance services. 
5.	Consider implementation issues of any proposed scheme, including: 
•	Changes that would be required to existing service systems 
•	Workforce capacity 
•	Lead times, implementation phasing and transition arrangements to introduce a scheme with consideration to service and workforce issues, fiscal outlook, and state and territory transitions. 

Appendix Three: Individual Support Package Guidelines 
•	Guidelines containing information about commonly used terms and acronyms with numerous practice guides,
•	Information about the purpose of Individual Support Packages, and the three separate funding arrangements contained in this program,
•	Implementation of continuous improvement through annual review,
•	Adoption of a structure called the Disability Support Register (DSR) to assess applications and allocate notional funding for new applicants,
•	Availability of a facilitator if required and where used acknowledgement needs to be recorded to prevent any conflict of interest, 
•	Availability of the Individual Support Package Handbook in a number of different formats,
•	Preparation of plans outlining specific supports, select provider(s) and negotiate commencement dates following acceptance and consent of notional funding,
•	Funding is not provided as income for the person,
•	Conditions stating that funding must not replace or duplicate, but may contribute towards supports that are available through other funding sources, including other local, state and commonwealth government programs,
•	Requirement that funding cannot be used for anything that is illegal, for gambling or employment of staff that are not employed by recognised service providers,
•	Guidelines about what types of services can be used to access support,
•	Minimum standards for disability service providers,
•	Conditions where a service user may engage the services a family member not living at the same residence as a paid provider of personal support, provided that the family member is employed by a service provider,
•	Information regarding the potential vulnerability of different service users,
•	Requirement for service users to use service providers that charge fees in accordance with the Disability Services Framework,
•	Funding is subject to review on a regular basis to ensure that it continues to meet the needs of the service user. The review period depends on the needs of the service user,
•	Requirements for when two or more people seek combined funding, for the funding of say a group house,
•	Funding administration arrangements for direct payments, including a deed of agreement that is signed by the service user. The person chooses and pays for supports in line with the goals of their funding plan and is responsible for keeping records of expenditure and meeting the accountability requirements outlined in the deed,
•	Funding administration arrangements for financial intermediary, and sets out the roles and responsibilities of the service user and the financial intermediary service,
•	Funding administration arrangements for registered service providers,
•	Conditions stating when the service user is permitted to make changes to their Individual Support Package without seeking approval from the department,
•	Requirements if expenditure exceeds Individual Support Package notional allocation,
•	Conditions for the allocation of emergency support,
•	Moving from one region to another, and moving from Victoria interstate.