Submission to the Senate Standing Committees on Community Affairs — National
Disability Insurance Scheme Bill 2012
a Vi t Novita Children’s Services ( ) a ABN 53 137 537 636 children’s services 171 Days Road Regency Park SA 5010 PO Box 2438 Regency Park SA 5942 22 January 2013 “ey T 08 8243 8243 F 08 8243 8361 enquiries@novita.org.au Committee Secretary www.novita.org.au
Senate Standing Committees on Community Affairs PO Box 6100 Parliament House CANBERRA ACT 2600
deeply concerned about this issue and would like to provide some comments.
Dear Committee Secretary
Submission to the Senate Standing Committees on Community Affairs - National Disability Insurance Scheme Bill 2012
The opportunity to provide a submission to the Senate Standing Committee on Community Affairs regarding the National Disability Insurance Scheme Bill 2012 is appreciated. Novita Childrens Services (Novita) welcomes this legislation and the establishment of both the NDIS and a National Disability Scheme Launch Transition Agency (the Agency) to administer the scheme in those States and Territories of Australia that will host a launch site. It is noted that the legislation sets out the statutory framework for the NDIS Novitas enclosed submission on the Bill is subject to ascertaining more details about the operational aspects of the scheme which will be contained in the NDIS Rules This is an important caveat, as the Rules will provide critical detail on numerous matters. This submission provides comments on certain key provisions in the Bill which it is hoped will be of assistance in the passage of the legislation through the Commonwealth Parliament Yours sincerely Glenn Rappensberg CHIEF EXECUTIVE
Submiission to tthe
Senatee Standingg Committtees on Coommunityy Affairs
Nationnal Disability Insurance Schemme Bill 20012
Office off the Chief Exxecutive Novita Chhildren’s Services PO Box 22438 Regency Park SA 59422 T +61 8 8243 8202 F +61 8 8243 8218 E enquuiries@novita..org.au W novitta.org.au
Further IInformation
Further innformation reggarding this doocumentation can be obtainned from the OfficeO of the Chhief Executivee, Novita Children’ s Services - 171 Days Rd, RegencyR Parkk, South Austrralia, 5010 This workk is copyright. Apart from anniy use permittted under the Copyright Act 1968 no part may be reprooduced without thhe permission of Novita Children’s Servicces.
National Disability Insurance Scheme Bill
BACKGROUND
Novita Children’s Services (Novita) provided a lengthy submission to the Productivity Commission Inquiry on Disability Care and Support, followed by a verbal presentation at the Commission’s public hearing in Adelaide in April 2011 and a subsequent written submission on the Productivity Commission’s Draft Report on Disability Care and Support.
Novita’s submissions have consistently emphasized the need for the National Disability Insurance Scheme (NDIS) to ensure children, young people, families and carers continue to access current services, while providing the structure to build and fund a service system that addresses the gaps, reduces the delays and replaces crisis-driven models of service with a national, equitable system empowered by people with disabilities and their families. Novita has highlighted the unique and critical set of needs from infancy to adulthood for those individuals who have a disability and for the families and carers who provide them with support.
Moreover, Novita has urged in its submissions that the special needs of the 0-18 age group must be given particular attention in the design of the NDIS. This is due to the complex and changing needs of children and families, together with community interest in the provision of intensive supports and interventions to help Australian children diagnosed with disabilities manage their condition within an appropriate treatment framework.
Novita’s submissions have highlighted the need to consolidate services for children and young people with disabilities, not diminish them; the need to ensure that all Australian children with a disability are eligible under the NDIS from early identification of impairment, which will often precede formal diagnosis; the desirability of having assessments that are empowering and creative and which avoid multiplicity and duplication; a recognition of the critical importance of funding specialist disability supports provided at intersections with mainstream services; and the essential requirement for maintaining and monitoring consistency of quality in disability service standards.
Historically, much of the responsibility for service provision for children has been left by Governments to the not-for-profit sector which, in the process, has been obliged to raise a substantial portion of funds that Government has not been prepared, or has not been able, too commit to children’s disability services. The NDIs must ensure that a market-driven, insurance model of service design covers the enormous funding gaps for which the not -for profit sector currently takes responsibility.
Disability Reforms Under the NDIS
Disability reforms under the NDIS must ensure that care and support services to children and young people with disabilities are specialised, personal and caring, while those individuals in need of equipment, aids and assistive technology can get them. Demand for all of those services is high and waiting lists are common.
Novita has provided feedback to the NDIS Advisory Group regarding the draft statements on eligibility and reasonable and necessary support under an NDIS. Novita’s submission outlined key recommendations on eligibility and reasonable and necessary support to ensure the special needs of children and adolescents with disability are reflected in legislation, regulations or guidelines which will underpin the commencement of the NDIS. To an important degree those concerns have been acknowledged and reflected in the NDIS Bill.
For children and adolescents with a disability, maximizing their functional capacity throughout their evolving childhood requires the input of allied health therapies, equipment/aids prescription and supply, personal care and support (including support in the education system), with sufficient intensity, duration and precision, to ensure less reliance on supports into adulthood and the longer-term.
Furthermore, supporting families to be resilient while they raise and support a child achieve maximum functional capacity, goals and aspirations is also critical. The NDIS Tier 3 support packages must address not only what is expected by the child or adolescent, but also the supports families and carers can expect to enable them to provide the best environment for their child to ensure the social equity and long term viability of an NDIS.
THE BILL
Novita welcomes this legislation and the establishment of both the NDIS and a National Disability Scheme Launch Transition Agency (the Agency) to administer the scheme in those States and Territories of Australia that will host a launch site.
It is noted that the legislation sets out the statutory framework for the NDIS. Novita’s submission on the Bill is subject to ascertaining more details about the operational aspects of the scheme which will be contained in the NDIS Rules. This is an important caveat, as the Rules will provide critical detail on numerous matters.
This submission provides comments on certain, key provisions in the Bill which, it is hoped, will be of assistance in the passage of the legislation through the Commonwealth Parliament.
Sections 3, 4 & 5 Objects and General Principles of the Act
The objects and the guiding principles provide appropriate reinforcement of the rights of people with disabilities to independence. The reference to obligations that the Australian Government has as a party to the United Nations Convention on the Rights of Persons with Disabilities is significant.
As an organisation that has delivered services in South Australia for seventy three years, Novita strongly supports the notion (section3 (1) (e)) of a nationally consistent approach to the access, provision and funding of care and supports for people with disabilities. The lack of a national approach in the past has exacerbated inequities in a system whose gaps have been acknowledged and accepted as insurmountable.
Section 14 Agency to provide funding to persons or entities
Entity is defined as a “partnership or unincorporated association”. That definition would appear to be narrow and restrictive. For example, many agencies, which would otherwise qualify as entities, are companies limited by guarantee.
Section 23 Residents Requirements
It is understood that during the initial implementation phase, a person seeking access to the Scheme will generally be required to reside within the catchment area specified for each launch site. That is appropriate.
Section 24 Disability Requirements together with Section 25 Early Intervention Requirements
Both sections would appear to provide the suitable criteria for access as a prospective participant. In particular, the early intervention requirement inclusive of a child who has developmental delay (section 25 (a) (ii)) is critical for the supports that are routinely required for numerous children.
Sections 26 and 27 Assessment
The provisions in these sections are noted, in relation to requests by the Agency for additional information. Novita will wait for the publication of the NDIS Rules, as provided by Section 27, before being able to make further comments. These Rules will be critical to the operational consideration which will guide assessors and permissible types of assessment.
Section 34 Reasonable and necessary supports
It is noted that all the stringent criteria in section 34 must be met. The interpretation of those criteria will be critical.
Section 34 (f) requires that: “the support is most appropriately funded or provided through the National Disability Insurance Scheme, and is not more appropriately funded or provided through other general systems of service delivery or support services offered by a person, agency or body, or systems of service delivery or support services offered: i. as part of a universal service obligation; or ii. in accordance with reasonable adjustments required under a law dealing with discrimination on that basis of disability”.
It is important to understand that the provision of children’s disability services are already taking place within or are connected to mainstream activities. In addition to continuing supports, key disability interventions are required at times of significant developmental milestones and at significant times of life transitions. Those transitions include transition into childcare; transition to preschool; transition into primary school; transition into middle school; transition into high school; transition from pediatric services to adult services; transition into employment; transition into vocational education and training; transition into tertiary education.
Novita provides a range of allied health services, disability support services, rehabilitation services, together with services to prescribe and support provision of equipment and assistive technology. In addition to those ‘direct’ services, Novita provides a range of ‘indirect’ services through inputs for individual clients into mainstream areas - predominantly education, transport, health, vocational training. Some of it is advocacy, some is disability-specific support, information and co-ordination; all in the cross-over between disability specific services and mainstream services. The legislation may not overcome the danger that there will be de-funding of those ‘indirect’, critical disability supports. If they are left to be identified and provided by mainstream services, there is a real danger that they will not receive sufficient recognition and priority.
In fact, children and adolescents with disability frequently transcend multiple systems,e.g. health, education and disability for their needs. In terms of health services, it is common that a child with cerebral palsy can have multiple surgical interventions within a hospital setting, while being eligible upon discharge to receive allied health therapy within an educational and community-based setting provided by the disability services sector.
The importance of mainstream services
The importance of mainstream services and their interrelatedness with the NDIS are vital. However, mainstream health systems are established to provide time-limited specific interventions focussed on achieving specific health outcomes such as the restoration of function, within normal limits, for the benefit of the patient following an acute event.
The Australian disability services system is complementary, but operates with a different focus. The different focus is in relation to the maximisation of an individual’s achievable function, irrespective of the event or cause of impairment. For children, these different outcomes are aimed at maximising children’s potential, helping them to achieve their goals and independence to enable them to participate in all of their domains across childhood. These can include home, child-care, kindergarten, and school, out of school hour’s care, recreation and employment preparation programs.
Accordingly, there is a very different outcomes focus compared to ‘other mainstream services’ which is of a critical nature in children and adolescents with a disability, and a key reason why rehabilitation is undertaken within a community-based setting in order to support the child’s maximum, achievable, functional capacity.
With inconsistent and disparate State and Territory Government approaches and allocations, as well as workforce and geographical challenges, Novita is concerned that making a determination that ‘reasonable and necessary support’ needs of children and adolescents with disabilities could be more appropriately met by other systems introduces a degree of subjectivity and considerable risk. This could inadvertently prevent children with disabilities from receiving reasonable and necessary support in a cohesive and comprehensive response. In turn, this could jeopardize their goal of attaining maximum functional capacity and therefore increase their independence in the short and long term.
Section 40 Effect of temporary absence on plans
If the participant is temporarily absent from Australia for less than 6 weeks (or longer if the CEO deems it appropriate), the plan is not affected. However, if the period of absence is longer (without approval), the plan is suspended until the participant returns to Australia. It would seem that 6 weeks is relatively short as a grace period and consideration might be given to increasing it, by at least a further 4 weeks.
Section 74 - 77 Children
The legislation contains special provisions relating to responsibilities for children. These provisions appear to be broadly acceptable and they include a duty on those acting on behalf of children to ascertain the wishes of the child concerned and to act in a manner that promotes the personal and social wellbeing of that child.
Section 75 Definition of parental responsibility
While the definition of parental responsibility in section 75 seems reasonable, the concept is not always translated readily and smoothly in relation to orders made under the Family Law Act, that have bearing upon parental responsibility for decisions about a child with disabilities. Although the Scheme Rules, proposed under section 75(4) may provide further illumination, it is possible that the Scheme CEO will be placed in difficult situations in regard to making specific determinations about parental responsibility.
Sections 99 - 103 Review of Decisions
Novita welcomes the fact that the legislation provides standard rights and processes for review of decisions (section 99). The legislation provides a further avenue of review (section 103) to the Administrative Appeals Tribunal. That right of final review is an important safeguard.
Sections 104 - 116 Compensation payments
The legislation provides that:
- if a participant or prospective participant is, or may be, entitled to compensation for personal injury, the CEO may require them to take action to claim or obtain the compensation;
- failing to comply with this requirement will result in a plan being suspended, or action to put in place a plan being deferred.
In considering whether or not it is reasonable to require a participant or prospective participant to take action, the legislation stipulates that the Agency CEO must take into account factors set out in section 104 (3). They include the circumstances which give rise to the possible entitlement to compensation and impediments to recovery of compensation.
It is difficult to know how the CEO can make an informed decision. At best, it could only be a decision based on partial knowledge of relevant facts and speculation about possible causes of injury. Legal advice would either be necessary or desirable about the prospects of success. In addition section 104 (3) (e) and (f) require the CEO to assess the financial situation of the prospective participant together with social and emotional impact. These are highly problematic considerations.
These provisions themselves are highly complex. While it is reasonable for the Agency to recover compensation fixed after NDIS amounts have paid, it is quite another matter to coerce an individual into taking legal action for possible compensation.
For example, a decision to proceed, or not to proceed with litigation is frequently difficult for parents of children with cerebral palsy. The difficulty of proving medical negligence, as the cause of cerebral palsy and as a basis for compensation, is generally high. Those cases that do proceed often are unresolved during the individual’s’ childhood and adolescence and frequently are not finalised until adulthood. That is, they may often continue for fifteen to twenty years, or even beyond. The litigation may involve legal expenses generally beyond the means of most Australian families. The prohibitive legal costs are often the greatest dis-incentive for families.
Moreover, even if families consider that they may have an even chance of successfully establishing medical negligence, the prospect of spending years of their lives tied up in litigation is heartbreaking. Many of them prefer to focus on the extra work that they have, day by day, in caring for their disabled child. For them, there can be a conscious decision not to litigate because of the pain and turmoil that the prolonged legal battle will have on their lives. In addition, the respondent to the claim will often be the local hospital where, in the meantime, they need to access services for many years.
Chapter 6 NDIS Launch Transition Agency
The legislation establishes the NDIS Launch Transition Agency. Among the functions of the Agency specified in section 118, it is pleasing to see that they include the critical area of facilitating innovation, research and best practice in the sector (section 118 (1) (c))and undertaking research relating to disabilities, early intervention supports and social contributes (section 118 (1) (f)).
Independent Advisory Council
Novita supports the provision in the legislation for the establishment of an Independent Advisory Council to advise the Board of the Agency.
ABOUT NOVITA CHILDREN’S SERVICES
Novita Children’s Services is a South Australian, non-Government, non-profit organisation established in 1939 as the Crippled Children’s Association of South Australia, to care for children diagnosed with polio. Today, Novita is a nationally recognised leader in the research, development and provision of quality services to children and young people living with disabilities and their families. Novita currently provides essential therapy, equipment and family support services to more than 2,000 children – and through broader work with families and communities, has a direct impact on more than 10,000 South Australians. Novita’s primary services include Early Childhood Services, Child and Adolescent Services, Country Outreach Services and an Inclusion Support Program. In addition, Novita provides a number of specialist services and programs including an Equipment Service, Rehabilitation Service, and Acquired Brain Injury Program. Primary and specialist services are delivered by teams that include staff from the professions of occupational therapy, physiotherapy, psychology, speech pathology and family support; provided at home, kindergarten, child care or at school by expert staff based in offices across Adelaide. Novita also provides essential equipment such as wheelchairs, walking frames and communication devices to help children to move, speak, play and really ‘connect with their worlds’. Novita provide services in partnership with children, their families and the community, and has well-established relationships with Government, non-Government agencies and the private sector in delivering services to children, adolescents and their families.
If the Agency considers that there is an entitlement to compensation, then the Agency should be prepared to fund litigation for a prospective participant who is unable or reluctant to make a claim for compensation. Otherwise it is quite inappropriate, or worse still, possibly unlawful for the Agency to suspend or threaten to suspend a participant’s plan. A Scheme which is meant to be universal in its coverage will be far from it.