NDIA Accountability Project

Submission to the Australian Senate Community Affairs Legislation Committee on the National Disability Insurance Scheme Amendment (Quality and Safeguards Commission and Other Measures) Bill 2017

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Submission to the Australian Senate Community Affairs

Legislation Committee on the

National Disability Insurance Scheme Amendment

(Quality and Safeguards Commission and Other Measures) Bill

2017

Date: 28 July 2017

From: Victorian Advocacy League for Individuals with Disability Inc

Contact Information:

235 Napier Street, Fitzroy VIC 3065

Phone: 03 9416 4003 Fax: 03 9416 0850 Email: info@valid.org.au Website: www.valid.org.au

About VALID

The Victorian Advocacy League for Individuals with Disability (VALID) is the peak organisation in the Victorian disability sector representing people with an intellectual disability. VALID is run by and for people with disability and their families. VALID has particular expertise in networking and providing information to people with disability and families across the state. VALID is committed to the vision of an Australian nation in which people with a disability are empowered to exercise their rights – as human beings and as citizens – in accordance with the United Nations Convention on the Rights of Persons with Disabilities. VALID strives to realise its vision through a range of strategies that work to empower people with disabilities to become the leaders of their own lives.

VALID works collaboratively within a range of networks, alliances, advisory groups and representative bodies and is:

  • The Victorian agency member of Inclusion Australia (National Council on Intellectual Disability)
  • An active member of the Disability Advocacy Network of Australia
  • A member of the Victorian Government NDIS Implementation Taskforce
  • A member of the NDIA Intellectual Disability Reference Group
  • Represented on the Future Social Service Institute Steering Committee
  • Appointed to the Registration and Accreditation for Victoria’s Disability Workforce Project Advisory Group

NDIS Amendment Bill 2017 submission Page 2 of 9

This submission

This submission from VALID to the Australian Senate Community Affairs Legislation Committee is in two parts:

  • PART 1 details VALID’s specific feedback relating to people with intellectual disability and complex support needs on the NDS Quality and Safeguarding Framework, on which the National Disability Insurance Scheme Amendment (Quality and Safeguards Commission and Other Measures) Bill 2017 is based.

  • PART 2 is VALID’s specific feedback on the National Disability Insurance Scheme Amendment (Quality and Safegards Commission and Other Measures) Bill 2017.

PART 1: VALID’s feedback on the NDIS Quality and Safeguarding Framework

This submission from VALID to the Australian Senate Committee on Committee Affairs Legislation concentrates on providing feedback on the NDIS Amendment Bill 2017. Given that this Bill is based on the NDIS Quality and Safeguarding Framework (the Framework), VALID would like to take the opportunity to make comment on areas of specific concern regarding the Framework.

Firstly, VALID would like to clearly state its broad support for the establishment of the Quality and Safeguards Commission (the Commission) and the Framework on which it is based. The comments below draw on our substantial individual advocacy work during the NDIS trial and rollout and particularly reflect our concerns relating to people with intellectual disability and NDIS participants with complex support needs.

Section 2.1.1 – What participants need for informed decision-making

Page 19: The majority of people in the NDS are people with intellectual disability and autism; people likely to have complex communication needs and who are unlikely to obtain information online. While face-to-face information sharing is mentioned, this must be a core strategy to ensure that people with intellectual disability can access information directly, and not just through formal or informal supports. In addition, best practice would suggest that a universal design approach to information is required.

While there is a substantial need for Easy English, there is an even greater need for plain language. Plain language makes written and oral information easier to understand and translate for everyone. Writing is in plain language if the words, structure and design are so clear that the reader can easily find what they need, understand what they find and use that information.

Page 23: The discussion on Linkages includes the observation that independent advocacy services have a key role in helping participants to assess information and make decisions. However, advocacy does not appear in the related table (p15).

Section 2.1.2. – Building participants’ capability & 2.1.3. Strengthening natural supports

Page: 23: The discussion on context of building participants’ capability includes the accurate observation that ‘Some participants could face high ‘transaction costs’ (for example time, effort and stress) in taking a more active role with providers.’

Page 27: The discussion on context regarding strengthening natural supports accurately states that ‘Carers may need supports to maintain their role….’

VALID strongly advocates for a specific strategy for people with complex supports. We would suggest that close to 100% of the families who self manage funding for people with complex support needs do so because of system failure. These families face extraordinary high ‘transaction costs’ and are in dire need of support to maintain their role. The NDIS, including in the way quality and safeguards are protected, must take great care not to exploit this expertise and commitment.

It is of particular concern that a high number of people receiving packages of over $100,000 have never even met an NDIA representative at any stage of the planning process. This lack of direct contact helps explain the experience of a number of people with very complex supports needs whose otherwise appropriately funded package still excludes specific critical supports because of an interpretation of reasonable and necessary that does not fully take into account their specific circumstances. For example, many people who exhibit behaviours of concern have been traumatised in their early lives. Planning their support takes time, and requires great patience and expertise.

Section 2.2.1. – Safeguarding participants through planning, implementation and review processes

Page 30: This section recognises the particular needs of a range of people with heightened vulnerability. Parents with disability should be specifically identified as a relevant group in this section.

Page 31: This section notes that participants at higher risk will usually require a greater level of support to develop their plan and usually work with an NDIA planner. VALID has long advocated for and supported the creation of teams of planners with specialist expertise. NDIS requires skilled, competent planners that have additional resources regarding complex needs available to them.

Page 33: The monitoring and evaluation section refers to the importance of the governance arrangements to the effectiveness of the NDIA. VALID is a strong supporter of an independent NDIA board that values the expertise arising from the lived experience of people with disability and their families.

Section 2.2.2. – Funding advocacy services

Page 33: The vital roles of individual advocacy and systemic advocacy are stated and the importance of independence acknowledged.

Section 2.2.3 – Supporting self managing participants

Page 35: The ‘how it will work’ section states the Commonwealth Government commitment to the National Disability Advocacy Program (NDAP).

The Framework claims that ‘advocacy will remain accessible to all people with disability’ but does not include any commitment to ensure that sufficient resources will be provided to resolve the current and rising unmet need for advocacy. The rollout of the NDIS has placed the advocacy sector under tremendous pressure; assisting the high number of people without natural supports through the transition to the NDIS, assisting people with complex support needs through transition, responding to the increasing number of requests for independent information and support and responding to increased demand as the number of disability providers rapidly increases, and people with disability become more aware of the role of independent advocates.

The Framework effectively commits to the continuation of the NDAP, but does not mention Commonwealth funding for systemic advocacy via the National Disability Representative Organisations Program (NDROP). It is vital that Government commits to resourcing both the NDAP and the NDROP appropriately to ensure that resourcing of advocacy grows in proportion to the increase in disability services.

VALID is a state funded advocacy organisation. We take this opportunity to strongly commend the Victorian Government for its ongoing commitment to independent advocacy and note with great regret the withdrawal of some other states and territories from funding ‘supplementary’ advocacy. These withdrawals, combined with increased unmet need, actually mean that access to advocacy is diminishing rather than increasing. We call for state and territory funding of independent advocacy to be core to the Quality and Safeguarding Framework, not supplementary.

The defunding of VALID’s national peak, Inclusion Australia (NCID), and the current uncertainty around the NDAP at a time when co-design of solutions to issues relating to people with intellectual disability, autism and people with complex support needs is of such importance, is most disappointing. VALID also calls for the Commonwealth funding of NDAP and NDROP to increase proportionally to the growth in the NDIS.

Section 2.2.3 – Supporting self managing participants

Page 39: VALID supports the Framework’s position that self-managing participants will be able to make complaints about their providers to the Commissioner, regardless of whether the provider is registered with the NDIS registrar.

Page 40: The discussion around Providers states that, although the full list of high-risk supports is yet to be finalised, it is expected to include services involving the implementation of behaviour support plans and restrictive practises.

VALID has significant concerns with this position. We agree entirely that people with clinical expertise and experience should undertake the development of positive behaviour plans. However, the view that the implementation of positive behaviour support is one distinct product or service is incorrect. Positive behaviour support is the facilitation of a network of services that enable a person with disabilities to effectively engage, participate and belong. This network of service commonly requires focus on both building the capability of the participant and on sustained support to the persons delivering supports (formal and informal) to the participant, and is not undertaken by a distinct group of ‘behaviour support workers’ who could then be an identified group of registered providers.

An approach that insists that the people who implement (positive) behaviour supports - ‘behaviour support workers’ (?) – must be registered providers is also inconsistent with the ‘thin market’ of appropriate providers of support for people with complex support needs identified by the Productivity Commission in its recent Position Paper. This approach will also place even more pressure back onto families when there is no local pool of registered providers available. The families of people with complex support needs continue to report that it is the quality of the interaction between a support worker and a person with disability that is of primary importance, and that self-managing participants must be able to source the skill sets they have identified as the most important.

Section 4.2.1. – Reducing restrictive practices

Page 78: As per the above, VALID has significant concerns about the position taken and statements made regarding the risks of self management of a plan for a person at risk of being subject to restrictive practices by a family member, especially around the use of unregistered providers. The experience of VALID members in this position is that they self manage because of (a) long term system failure – including supports provided by government and (b) experience of abuse and trauma. The experience of these families is that a person with disability with complex support needs does in fact choose their own support workers (usually via their choices of behaviour) and that this interaction can then be further developed with additional training.

VALID is concerned that the positions around self-management in the Framework are not informed by either the lived experience of people with disability currently self-managing or the evidence of quality outcomes achieved when the self-management option is used.

PART 2: VALID’s feedback on the National Disability Insurance Scheme Amendment (the Quality and Safeguards Commission and Other Measures) Bill 2017

VALID reiterates support for the National Disability Insurance Scheme Amendment (Quality and Safeguards Commission and Other Measures) Bill 2017 (The NDIS Amendment Bill 2017). We regard the establishment of the Quality and Safegards Commission (the Commission) as fundamental to the NDIS successfully transforming the lives of people with disability. We also support other measures such as the insertion at subsection 4(9) that ensures that a statement about the centrality of people with disability and the importance of co-design are included in the NDIS legislation.

Nonetheless, we have some comments, questions on the detail of The NDIS Amendment Bill 2017 and make associated recommendations.

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Submission detail

The following submission does not list recommendations in order of priority, but rather reflects the order in which they appear in the Act.

Schedule 1 NDIS Quality and Safeguards Commission.

Item 1: 73ZN Banning orders

VALID strongly supports the ability of the Commissioner to have the power to make banning orders prohibiting or restricting the activities of an NDIS provider or a person as per section 73ZN. However, we have the following questions about the scope of the banning orders:

  • How will the list of banning orders interact with the nationally consistent prohibition orders issued to a health service provider that has breached the (Health) Code of Conduct and pose a serious risk to an individual or the public?
  • What steps are being taken to ensue that providers or people that receive a prohibition order within the health sector do not re-emerge as NDIS providers or vice versa?
  • Will the Commissioner have powers to prevent a provider or person who is banned within the NDIS working with other vulnerable groups (e.g. frail aged)?

Recommendation 1

VALID recommends that the powers of the NDIS Quality and Safeguards Commissioner are appropriate to prevent unsuitable people moving between sectors and preying on vulnerable people.

Recommendation 2

VALID recommends that consideration be given to ensuring that the banning powers of the NDIS Commissioner and the prohibition powers of state and territory Health Commissioners overlap so that people banned in the NDIS cannot provide health services and vice versa.

Item 2: 73ZS NDIS Provider Register

VALID supports the establishment of an NDIS Provider Register and the associated powers provided to the Commissioner as per the proposed section 73ZS. However, we have concerns that provider registration will not be sufficient to improve the quality and safety of supports provided within the NDIS, and that Registration and Assessment of workers, as per the work in development in Victoria is needed as an extra layer of protection. Therefore, we have the following questions:

  • What consideration has been given to regarding Victoria’s work on the registration and assessment of NDIS workers as a pilot where the results will determine expansion across the country?
  • What are the rights and entitlements conferred to registered providers within the NDIS compared with non-registered providers?

Recommendation 3

VALID recommends that Victoria’s development of a registration and assessment scheme for the NDIS be regarded as a national pilot, with the results determining expansion across the country.

Schedule 2 NDIS Review

Item 3: 181D Commissioner functions and powers

VALID supports the inclusion of behaviour support function within the Commissioner’s functions and powers per 181D (1) (d) and other sections, especially 181H Commissioner’s behaviour support functions. However, we would prefer to see best practice language used in the legislation – i.e. positive behaviour support functions (our ephasis) - as per the NDS Quality and Safeguarding Framework.

Recommendation 4

VALID recommends that all references to ‘behaviour support’ in the NDIS Amendment Bill 2017 be amended to ‘positive behaviour support’.

Item 4: After subsection 4(9) insert

(9A) People with disability are central to the National Disability Insurance Scheme and should be included in a co-design capacity.

VALID is delighted that sector recommendations that the centrality of people with disability in the NDIS and their contribution to co-design should be reflected in the Act have been acted upon.

Recommendation 5

VALID recommends that the new subsection 4 (9A) be included in the NDIS Amendment Bill 2017 as written

Item 5: Section 31 and beyond

Omit ‘review’ and substitute ‘reassessment’

VALID is pleased that sector feedback about the over-use of the word ‘review’ is the NDIS Act has been reflected in the NDIS Amendment Bill 2017. Making the change to Plan Reassessments will now avoid confusion and quarantine the term ‘review’ to the formal processes associated with the review of reviewable decisions.

Recommendation 6

VALID recommends that the changes to Section 31 and beyond that quarantine the word ‘review’ to only refer to reviewable decisions be included in the NDIS Amendment Bill 2017 as written.

Item 6: Section 26 (Requests that the CEO may make)

states: (1) The requests the CEO may make under this subsection after a prospective participant has made an access request (see paragraph 20(b)) are as follows: (a) That the prospective participant, or another person, provide information that is reasonably necessary for deciding whether or not the prospective participant meets the access criteria; (b) That the prospective participant do either or both of the following: (i) Undergo an assessment and provide to the CEO the report, in the approved form, of the person who conducts the assessment;

(ii) undergo, whether or not at a particular place, a medical, psychiatric, psychological or other examination, conducted by an appropriately qualified person, and provide to the CEO the report, in the approved form, of the person who conducts the examination.

The Act makes no provision for which publicly funded ‘appropriately qualified person’ will conduct such examinations, or how the examination will be funded. For many people, especially people with behaviours of concern and complex supports needs, the costs of appropriate assessments are a barrier to accessing and navigating the NDS

Recommendation 7 VALID recommends NDIS Amendment Bill 2017include direction on how disability assessments should be funded, such that people with disability do not miss out of supports because of a lack of access to assessment.

Item 7: Section 127 (Appointment of Board members) VALID is disappointed to observe that sector recommendations that personal experience of disability (having a disability or a family member with disability) as desirable for board members have not been included in the NDIS Amendment Bill 2017.

The Act also does not recognise the skills, experience or knowledge associated with large disability organisations that are not recognised as disability services, including information and advocacy providers.

Recommendation 8 VALID recommends that the NDIS Amendment Bill 2017 include personal experience (having a disability or a family member with disability) and the skills, extperience or knowledge associated with large disability organisations that are not recognised as disability services, as fields of eligibility for appointment to the Board.

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