Cerebral Palsy Australia

Response to 
Disability Care and Support Inquiry
Australian Productivity Commission
Draft Report February 2011

May 5, 2011

Policy Working Group
Cerebral Palsy Australia
Post Office Box 608
Box Hill Victoria 3128
T 03 9843 3069

Introduction

This response to the Productivity Commission has been completed by the Policy Working Group of Cerebral Palsy Australia.

Cerebral Palsy Australia is the national peak body of Member Organisations that deliver services to people with cerebral palsy and people with similar disabilities and their carers. Since 1952, Cerebral Palsy Australia (formerly known as C P Australia and the Australian Cerebral Palsy Association) has provided a national focus for disability awareness, fundraising and service development for children and adults with cerebral palsy.

The Member Organisations of Cerebral Palsy Australia include diverse organisations from each state and territory. These are:
•	Carpentaria Disability Services, located in the Northern Territory
•	Cerebral Palsy League of Queensland
•	Cerebral Palsy Support Network, located in Victoria
•	Cerebral Palsy Tasmania
•	Community Accommodation and Respite Agency (CARA), located in South Australia
•	Cootharinga Northern Queensland
•	Leveda Inc located in South Australia
•	Northcott Disability Services, located in New South Wales and the ACT
•	Novita Children’s Services, located in South Australia
•	Scope (VIC) Ltd
•	Spastic Centres of South Australia Inc (SCOSA)
•	The Centre for Cerebral Palsy, located in Western Australia
•	Yooralla, located in Victoria.

The combined operational budget of all Cerebral Palsy Australia Member Organisations is well in excess of $300 million. The Member Organisations provide services to children and adults with cerebral palsy and similar disabilities. Services include accommodation, respite, day options, employment, therapy, equipment prescription and manufacture, community access and community development.

Cerebral Palsy Australia wishes to congratulate the Productivity Commission on its significant work. The recognition that the disability sector needs transformational change is indeed welcomed. Cerebral Palsy Australia also welcomes the Productivity Commission’s acknowledgment that the disability support system as it stands currently is broken and fragmented, resulting in inefficient and ineffective service delivery. It is encouraging to see that people with disability in Australia are finally being heard and that the Productivity Commission has commenced a process to address lack of choice and funding uncertainty for people with disability, their families and carers. 

Cerebral Palsy Australia supports a national disability insurance scheme. By recommending the overhaul of the current system rather than merely tinkering with it, the Productivity Commission has provided the opportunity for Governments to meet its obligations under the United Nations Convention on the Rights of Persons with Disabilities which the Federal Government ratified in 2008. As well, the Draft Report of the Productivity Commission (February 2011) supports many aspects of the 2010-2020 National Disability Strategy.

Cerebral Palsy Australia requests that the Productivity Commission notes the individual responses to the Draft Report which have been submitted recently by some of our Member Organisations. These include:
•	CARA (Community Accommodation and Respite Agency), located in South Australia
•	Cerebral Palsy League of Queensland
•	Leveda Inc, located in South Australia
•	Northcott Disability Services, located in New South Wales and the ACT
•	Novita Children’s Services, located in South Australia
•	Scope, located in Victoria
•	The Centre for Cerebral Palsy, located in Western Australia

As well as noting these responses submitted by our Member Organisations, Cerebral Palsy Australia wishes to emphasise the following areas, some indicating significant agreement. Issues where we express concern, primarily around implementation, are also outlined.

Philosophy underpinning the design of the system
Cerebral Palsy Australia is keen to see that the design of the proposed Scheme empowers people with disability to maximise their independence and contribution to society, and not just continue a dependency on government or community hand outs for the provision of care. The Scheme needs to transform the premise of disability support from providing care and safety to enabling independence, choice and maximising contribution and community inclusion.

The Scheme needs to focus on encouraging and resourcing the support alternative that brings about the greatest opportunity for people with disability to achieve the next level of independence, whatever that may be, including switching on and off lights, using eye gaze technology, to working full time. This will move Disability Support into a consistent social policy space with Education and Labour Market support – where the aim is to enable every individual Australian to maximise their opportunities and to contribute to the social and economic fabric of their communities and the nation. Such an approach will also enable outcomes of the investment of support being easier to measure with every support provided being a link to the achievement of an individual’s life goals.  Towards achieving this new planning paradigm Cerebral Palsy Australia strongly supports the Productivity Commission’s emphasis for individualised options for people with disability enabling them to have more power, be independent and have choice of service provider and services.

Establishment of the National Insurance Scheme
Cerebral Palsy Australia strongly supports the Productivity Commission’s recommendation to establish a National Disability Insurance Scheme (NDIS) and sees it as a step towards providing universal entitlement to all people with disability.  To ensure that the NDIS achieves optimal outcomes for people with disability, the Productivity Commission needs to further investigate aspects of the implementation processes, prior to drafting its final report.   Cerebral Palsy Australia strongly urges the Productivity Commission to ensure that no person with disability who now receives funded support is left worse off as a result of the proposed NDIS.

Cerebral Palsy Australia envisages the implementation to be perfected through trial and error over a considerable period of time.  It is likely that varying lessons will be learnt through its implementation in the different jurisdictions.  It is therefore necessary that officials who have foremost responsibility for implementing the proposed scheme be prepared to have an open mind, be flexible, and perceive the first few years of implementation as a period of learning and adjustment.

Cerebral Palsy Australia questions the need to have two distinct schemes to cater to the needs of people with disability. Cerebral Palsy Australia believes strongly that no differentiation in entitlement to the NDIS should be made on the basis of how a person acquired a disability, and recommends the integration of both schemes. Cerebral Palsy Australia strongly recommends that disability acquired through catastrophic injury be included in the eligibility criteria for the NDIS in line with its recommendation that the NDIS and NIIS be integrated into one system. When examining and deciding upon the final design and funding model for a NDIS Cerebral Palsy Australia believes that what is fundamental is whether it: 

•	provides universal and equal access; 
•	fosters and encourages independence for people with a disability across the life-span; 
•	provides people with a disability and their families the knowledge and control to make informed choices; 
•	flexibly funds a range of services and supports to enable all people with a disability to live the life they want and be included as equal and valuable members of society. 

Cerebral Palsy Australia welcomes the establishment of a timeline to commence the Scheme’s implementation, the trials in 2014, followed by its rollout throughout Australia in 2015. Since all Australian jurisdictions have unique features and characteristics however, it strongly recommends that trials be conducted in these jurisdictions to ensure that the NDIS recognises and acknowledges the unique characteristics and features of all jurisdictions and operates to benefit people with disability in all Australian jurisdictions. In addition, there are many special features that are built into local systems in the different jurisdictions from which the NDIS can learn and benefit.

Individualised funding
Individualized funding is a way of organizing consumer-directed care that has been introduced in most Western European countries and parts of North America (Fisher et al 2010). Cerebral Palsy Australia supports individualised funding but acknowledges the importance of establishing different models of operation in order to accommodate the diverse needs and circumstances of individuals with disability and their families and carers.

For these funding models to be effective sustainable and workable however, sufficient resources and supports need to be put into training and education for people with a disability and their families and carers to ensure they have skills required to be active agents in planning, implementing and monitoring their support packages.  In addition, service providers would need to have access to adequate resources in order to implement new financial and administrative systems required to support individualised funding models.

Workforce Planning and Training
Where people with disability have individualised packages, Cerebral Palsy Australia wishes to emphasise the importance of provision of quality services. An important component of ensuring quality services includes the provision of adequate protections through the specification of minimum standards and qualifications of the workforce. With aged care and child care moving towards minimum standards, the Disability Sector should follow and build on standards as specified in some Australian states.

A further component of this issue is the consideration of flexible delivery of teaching to meet such standards. Market forces may not necessarily address this issue of adequate teaching and qualifications.

Support for those under 18 years
Cerebral Palsy Australia believes that disability support should be available to all children with a disability, regardless of the severity of its impact. For people under the age of 18 the proposed model of 3 tiers would be better replaced by a single or no tier model.

As with Education, Disability Support for under 18’s should be viewed as an investment in the future. Such an investment would ensure that, as adults, these individuals are in the best possible position to maximise their independence. Cerebral Palsy Australia suggests that the Better Start Program be incorporated with the NDIS and extended to age 18 using the already agreed eligibility criteria and interventions.

Cerebral Palsy Australia also proposes that the period from 16 to 17 years signals the commencement of real transition to adulthood and planning to realise opportunities – to ensure that the Scheme places the highest possible value on realising the investment made in earlier years and sourcing employment wherever possible.  This will ensure that a young person with a diagnosis of cerebral palsy would gain access to therapy, equipment and support that would build their physical and emotional independence and reduce their reliance on funding in adulthood.

This is a way to bring about generational change in our society in respect to the expectations and value, we as a community, place on a person with a disability and what they are capable of achieving. As a nation, we face the prospect of a reducing labour force over the next fifty years, so we cannot afford not to have people with a disability and their informal carers placed in a position of greatest contribution.

Complementary Services
Cerebral Palsy Australia agrees that complementary services such as education services, employment, health, housing, income support and public transport should not be included in the NDIS. This is particularly important to ensure that agencies responsible for these areas not only provide appropriate services to people with disability but also enhance their service provision. There is a tendency amongst mainstream agencies to relegate these responsibilities to those agencies that are perceived to have primary responsibility for special needs clients. It is important however that the NDIS work closely with these service providers to enable individuals with disability to receive a better coordinated and a more holistic approach to address individual need.

Management of the NDIS
Cerebral Palsy Australia acknowledges the need for streamlining the disability bureaucracy to make it easier for people with disability and their families to access services and support.  It is also critically important that the new system is transferable across jurisdictions so that an individual who relocates from one state/Territory to another does not have to go through a new assessment process.  Such a system will give Australians with disabilities the same potential as other Australians to relocate anywhere in Australia.

Cerebral Palsy Australia acknowledges the many problems with the current system, but also acknowledges the major roles State/Territory governments have played in providing funded support in the disability sector.  They also have a strong commitment to people with disability which is reflected in the contributions they make annually to disability services and the considerable investments they have made in infrastructure and human capital over many decades. 

Cerebral Palsy Australia strongly recommends that the NDIS has an overarching national framework including national standards, benchmarks, expected outcomes, accountability measures and governance within which implementation is managed locally.  State disability authorities have a good understanding of local features, characteristics and factors and have organisational structures that suit the needs of local circumstances. State / territory jurisdictions are best placed to manage the scheme’s implementation within the national framework and their involvement needs to be retained within the NDIS. An inter-governmental agreement between the Federal Government and State/Territory governments can be the basis of the federated model. Cerebral Palsy Australia acknowledges that the federated model which the Productivity Commission proposes for the NIIS would be appropriate for the NDIS.

Assessment
Cerebral Palsy Australia believes that assessment needs to be person-centred, flexible and consider the needs and involvement of the person’s family, carers and informal support networks. Assessment needs to be a pathway for achieving, not a process for gathering evidence to close doors. Clients (both adult and children) want one assessment point to be used across all government agencies and across all environments. This would involve sharing information electronically across Centrelink, Education, Health, Transport and NDIA. This would be achievable with Government developing and owning the various assessment processes, providing accreditation to assessment bodies that are disability experts and moderating the assessments for consistency. Cerebral Palsy Australia strongly recommends that assessments be undertaken by multidisciplinary teams to ensure the best outcomes for people with disability.

It is imperative that the assessment tools being developed be trialled extensively to ensure that they have the capacity to be objective and meet individual needs. Cerebral Palsy Australia strongly recommends that they be trialled across jurisdictions and across varying types of disabilities.

The needs of many clients, particularly those with a multiplicity of needs, cannot be assessed in a short space of time.  Their needs become known through continuous assessment over a longer period of time. Equally, their situations can change quickly, sometimes even overnight, requiring different supports. Cerebral Palsy Australia is unclear about how the NDIS will deal with these situations and urges careful consideration be given to this issue.

For the assessment and planning processes to be meaningfully applied to people with disability, their families and carers, strong strategies need to be developed to increase their capacity to participate fully in these processes and to get the best possible outcomes from the new scheme. 

Cerebral Palsy Australia agrees that exaggerated claims and vague or generous use of assessment tools can ‘…risk diluting resourcing, be unfair, undermine community acceptance of adequate public funding and threaten scheme sustainability…’ (Productivity Commission February 2011 Vol 1: 18) 
and that there should be safeguards to prevent sustainability of the scheme being derailed. It is equally or more important however to ensure that there are ample safeguards to protect individuals against an all powerful bureaucracy, particularly one that has a strong commercial leaning, despite being a government body.

If the number of assessments people with disability undergo could be decreased this would free up a substantial number of people in the disability and associated sectors thereby enhancing delivery of services.

Complaints mechanism
Cerebral Palsy Australia welcomes the establishment of a complaints office so that people with disability and service providers could complain or contest the decisions of the NDIA. The wisdom of locating it within the NDIS is questioned however, even with the assurance of the office being headed by an independent statutory officer.  In government relations, even independent statutory officers can be vulnerable to the directions and wishes of government.  Usually, the strength of character of the individual holding office determines such an office’s success. The disability sector needs a system or an office which will put clients’ needs over all else.  The credibility of the complaints office would be boosted with clients and service providers alike if it was located outside the responsible agency, and is entirely independent of Government.  

Conclusion
Cerebral Palsy Australia supports the establishment of the NDIS and acknowledges the significant work of the Productivity Commission and the comprehensive nature of the reforms. Clearly there are many issues still to be addressed prior to the release of the Productivity Commission’s final report. Cerebral Palsy Australia would encourage a systematic and considered approach ensuring that the interests of people with disability, their families and carers are enhanced and inclusion of people with disability in everyday life is achieved.

Bibliography

CARA (Community Accommodation and Respite Agency) April 2011. Response to the Productivity Commission raft Report Disability Care and Support

Cerebral Palsy League of Queensland 28 April 2011. CPL Response to the Productivity Commission Draft Report – Disability Care and Support

Commonwealth of Australia 2011. 2010-2020 National Disability Strategy An initiative of the Council of Australian Governments

Fisher, K et al 2010. Effectiveness of individual funding approaches for disability support Australian Government Department of Families, Housing, Community Services and Indigenous Affairs, Occasional Paper #29, Canberra: http://www.fahcsia.gov.au/about/publicationsarticles/research/occasional/Documents/op29/op29.PDF 

Leveda Inc May 2011 Disability Care and Support Draft Inquiry Report: Response from Leveda Inc

Northcott Disability Services May 2011 Australian Government Productivity Commission Inquiry into a National Disability Care and Support Scheme Post Draft Report Submission

Novita Children’s Services May 2011 Submission on the draft of the Productivity Commission Disability Care and Support Inquiry

Scope April 2011. Submission to Productivity Commission Draft Report Disability Care and Support

The Centre for Cerebral Palsy April 2011 Disability Care and Support, Draft Inquiry Report Response from the Centre for Cerebral Palsy, Western Australia.