Submission to the Senate Standing Committee on Community Affairs
Inquiry into the National Disability Insurance Scheme Bill 2012
by the
Children’s Not for Profit Group
About the Children’s Not for Profit Group
The Children’s Not for Profit Group (CNPG) Queensland comprises the CEOs and leaders of thelargest children’s charity groups across Queensland, representing approximately 8000 children andtheir families. CNPG was formed in 2010 in recognition of the unique needs and challenges whichchildren with disability and their families experience. We work together to improve the wholesystem that supports children with disability and their families. Our goal is to provide thesupports and services children with disability need to maximize their independence and well-being.The purpose of CNPG’s submission to the Senate Inquiry into the National Disability InsuranceScheme (NDIS) Bill 2012 is to highlight intended and unintended consequences the legislation•may have on CNFPG’s constituency – children with disabilities and their families. We aim to draw•the Inquiry’s attention to areas which we think are of particular importance to children with•disability and their families which we believe should be reflected in the legislation which goes•before Parliament, or in the Rules now or in the future.•
•Issues covered in this submission General principles guiding actions under this Act Early intervention – functional capacity Early intervention – defining what may be funded Decision making by children Age restrictions Composition of the Board and Council4 General principles guiding actions under this Act(12) The role of families, carers and other significant persons in the lives of people with disability is to be acknowledged and respected. Children’s Not for Profit Group Submission to Senate Inquiry into the NDIS Bill 2012 page 1
AnalysisFamilies are responsible for the support and well-being of their children with disability and theirchildren without disability. For many families with children with disability, this personalresponsibility is life-long. Strengthening this clause beyond acknowledging and respecting familiesto recognising their need for support in what may be a more challenging role would signal thevalue the nation places on all family members in their support for children with disability.RecommendationR(12) The role of families, carers and other significant persons in the lives of people with disability is vital in maximising a child’s independence and thereby reducing costs in adult years. The additional challenges the family as a whole may face when caring for and supporting children with disability needs to be included in planning individualised supports.Early intervention – functional capacitySection 25 (c) states:(c) the CEO is satisfied that the provision of early intervention supports for the person islikely to:(i) mitigate, alleviate or prevent the deterioration of the functional capacity of the person toundertake communication, social interaction, learning, mobility, self-care or self-management;AnalysisThis assumes there is existing functional capacity, which may exclude some babies and youngerchildren who haven’t had the chance to develop functional capacity.RecommendationThis clause should also include provision to build functional capacity, if this is not alreadydemonstrated.Early intervention – defining what may be funded(5) People with disability should be supported to receive reasonable and necessary supports,including early intervention supports Children’s Not for Profit Group Submission to Senate Inquiry into the NDIS Bill 2012 page 2
AnalysisCNPG is aware that defining the therapies and options which may be included in NDIS-fundedearly intervention has not been finalised. This may be an area that is more properly included infuture Rules.Without defining what early interventions should be “in” or “out” of the NDIS, CNPG thinks it isimportant to draw the Senate Inquiry’s attention to the wide range of views and existing practicesaround evidence-based, evidence-informed and anecdotal evidence of early intervention supports,and the need to take into account the views, capacities and aspirations of children with disabilityand their families when assessing which types of early intervention may be most useful inachieving individual goals.It is appreciated that the NDIS should aim to identify and fund cost-effective early interventionintended to achieve desired outcomes. It is important that outcomes and goals provide quality oflife and facilitate independence and participation. Based on the experiences of CNPG’s clients -children with disability and their families - CNPG does not think it is always possible to determinethe various types of early interventions which should be funded by the NDIS based on scientificevidence alone. For example, should the NDIS use similar criteria to that which accreditedAustralian health funds use when specifying which “alternative” or “complementary” therapies andtreatments qualify for rebates?CNPG believes the NDIS could usefully employ a global best practice model, by investigating,reviewing and measuring a range of early interventions against desired outcomes articulated in anindividual plan, which would help formulate the setting of standards and benchmarks. This wouldenable families of children with disability to make more informed decisions when considering arange of early intervention options and encourage development of innovative, cost-effective earlyinterventions which support achievement of outcomes.For example, an intervention known as Conductive Education is well-known and has long beenpractised in Hungary. An intervention known as Vojta Therapy is well-known and long beenpractised in Germany. Both therapies are available in their respective nations as early interventionoptions for children with neurological movement disorders but are not endorsed by professionalassociations in Australia. In Australia, some families seek out local, accredited practitioners ofboth these options, due to anecdotal evidence of results. Neither of these interventions has ascientific evidence base which NDIS assessors could use to make objective decisions aboutfunding a goal-based early intervention.
Children’s Not for Profit Group Submission to Senate Inquiry into the NDIS Bill 2012 page 3
CNPG does not advocate for the inclusion or non-inclusion of the above or other specific earlyinterventions, but aims to raise the Committee’s awareness of the need for all stakeholders in theNDIS to canvass these questions openly with the aim of promoting best practice earlyintervention options and outcomes which promote quality of life and facilitate independence andparticipation.Recommendations1. Include in the Act or in the Rules recognition of the need to consider the capacity and cost- effectiveness of non evidence-based therapy or early interventions which are safe and which demonstrate potential to improve quality of life, participation and independence.2. The NDIS should as part of its research function track and review outcomes of non-evidence- based therapies used by participants in the Scheme to develop standards and benchmarks based on international best practice to facilitate informed decision-making by NDIS users, in particular families of children considering early intervention options. This approach would align with the following clause: (14) Innovation, quality, continuous improvement, contemporary best practice and effectiveness in the provision of supports to people with disability are to be promoted.Decision-making by childrenAnalysisSection 74 (5) appears to provide power to act according to the wishes of the child but contraryto the wishes of the parent.The CEO may impose obligations on the parent to help achieve a plan which they did notapprove. If the CEO can over-ride parental responsibility, CNPG thinks it is neither fair norappropriate for the CEO to also determine how much support it is reasonable to expect a familyto provide.CNPG has serious misgivings about potential unintended consequences in situations where theCEO has the power to override the wishes of the parent in determining the participation plan,assuming that the definition of “child” is aligned with the legal definition of minors.The effects of this clause need to be considered in conjunction with Section 34 (d): Children’s Not for Profit Group Submission to Senate Inquiry into the NDIS Bill 2012 page 4
the funding or provision of the support takes account of what it is reasonable to expect families,carers, informal networks and the community to provide;Children who demonstrate capability and interest in making some decisions for themselves couldand should play an active role in developing their plan and choosing their supports. This is notnecessarily based on the age of the child but on the maturity, natural supports and capacity forunobtrusive review and requires assessment of this capacity to be based on individual needs.•Striking a balance in this situation is of importance naturally to children with disability and theirfamilies, but also to service providers who specialise in family-focused, child-centred supports.•RecommendationReframe• legislation with some flexibility so that: The CEO must balance the needs, views, requirements and capacity of the child and parent/family, where the parents/family are expected to carry out support The child is considered within the context of the actual, natural family unit that he/she lives in
• The needs of the child with disability should not supersede nor be subsumed by the natural needs of other family members. In particular, the natural role, needs and expectations of siblings are included in when developing a support plan. Siblings are not only possible family carers, but potential life-long companions who may play a key role throughout a lifetime of connecting with and valuing the person with disability Children are supported to gradually play a more prominent role in planning their lives if they wish, considering the types of supports they prefer and defining the goals they want the NDIS to help them pursueEligibilityAge restrictionsThe definition of developmental delay in Part 4 of Chapter 1 puts an upper age limit on when adevelopmental delay can occur; a child must be under the age of six for the label of adevelopmental delay to apply. To meet the disability criteria after that age, a child must provethat their disability is likely to be permanent and support is likely to be neededFor their lifetime.Analysis Children’s Not for Profit Group Submission to Senate Inquiry into the NDIS Bill 2012 page 5
Most children can be given a more specific prognosis by the age of six, but it is not clear if this isless true for some impairment than others. This age restriction also does not take intoaccount that there may be difficulty in accessing specialist information in time to ‘switch over’ toother eligibility criteria before a child turns six.RecommendationLegislation should recognise the potential for developmental delay to be recognised after the ageof six.Composition of the Board and Advisory CouncilAnalysisSection 127 states that the Board of the Agency should be made up of a Chair and 8 othermembers; some must have expertise in ‘use of disability services’. Other than referring to theneed to ensure an ‘appropriate balance’ of skills on the Board, there is no mention of specificpositions for people with disability on the Board, including young people, or family carers, whowill continue to provide a significant proportion of support, care and provision of therapy, carryout medical and health instructions and on whom a child with disability depends to maximisetheir health, well-being and progress.An Independent Advisory Council is also established under the legislation to provide advice to theBoard. This Council will contain a Principal and no more than 12 other members. Section 147(5)says that the Council should consist of a diversity of people with disability, and should have atleast 4 members with disability and(ii) at least 2 of the members are carers of people with disability and have skills, experienceor knowledge relating to disability services;RecommendationThat one of the two carer members of the Advisory Council has specific knowledge andexperience of supporting the early intervention needs of young children with disability and theirfamilies, to reflect the increased ability to influence life-course outcomes through appropriateearly intervention programs.AppendixMembers of Children’s Not for Profit Group: Children’s Not for Profit Group Submission to Senate Inquiry into the NDIS Bill 2012 page 6
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•• AEIOU• Autism Qld• Cerebral Palsy League• Deaf Services Qld• Down Syndrome Association of Qld• Endeavour Foundation• Every Australian Counts The Foundation for Angelman Syndrome Therapeutics Australia Hear and Say Centre Horizon Inc Life Without Barriers Montrose Access Sunshine Coast Children's Therapy Centre Waminda Services
Children’s Not for Profit Group Submission to Senate Inquiry into the NDIS Bill 2012 page 7