NDIA Accountability Project

Submission 101 — The Hon Coralee O'Rourke MP, Queensland Minister for Communities, Queensland Minister for Disability Services and Seniors (Attachment 1) — Select Committee on Autism

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Queensland Government submission NDIS Act 2013 review

Contents

Queensland Government submission

Executive Overview

The Queensland Government is committed to ensuring Queenslanders with disability, and their families and carers, experience a smooth transition to the National Disability Insurance Scheme (NDIS). During the NDIS transition period, Queensland invested $13 million in participant readiness initiatives to help people with disability: find out about the NDIS; have a better understanding of what it could mean for them; and, connect with the Scheme.

At 30 June 2019, over 52,2001 Queenslanders were participating in the NDIS (including children accessing the Early Childhood Early Education pathway), and for many of these people, the NDIS has delivered on its promise to support participants in achieving increased social and economic participation and enabling participants to have more choice and control. However, there remain some key outstanding issues:

  • procedural hurdles are limiting access to the scheme
  • participants face long delays before they are able to meet with a planner
  • plans may not include the right type, mix and amount of support due to incompleteness of planner’s knowledge about disability or the participant’s individual needs, or inconsistency with the agreed roles and responsibilities of the NDIS and other service systems, and
  • participants are not able to use the full value of the supports in their plans due to difficulty in understanding their plan, in navigating the system to connect with providers or lack of available services, or plans containing inappropriate mix of supports.

Timeliness

At 30 June 2019, 40 per cent of complaints received by the NDIA in Quarter 3 (2018-19) related to timeliness (national figure)2. Access and planning processes must be streamlined and enhanced to improve participant’s experiences and outcomes. Systemic barriers, such as: difficulty in obtaining and lodging an access request form; procedural barriers to information sharing between the NDIA and mainstream services; and, lack of transparency in access decisions, are impacting on the time it takes for plans to be developed and decisions to be reviewed. Queensland recommends the NDIA staffing cap be lifted to enable the agency to respond more flexibly to staffing needs to meet increased demand for access decisions and developing and reviewing plans.

Planning

A total of 48 per cent of appeals to the Administrative Appeals Tribunal are related to participant plans 3. Planners must have the knowledge and skills required to work with participants and their families to develop quality plans which meet their individual needs. Currently, plan quality varies, meaning people with similar needs are receiving plans that differ widely in the type and level of supports included.

Planning processes must be flexible to respond to people living in rural and remote areas who may not be able to travel to a planner’s location.

Importantly, planners need a sound knowledge of disability and supports when they are engaging with people who have complex support needs who are often navigating multiple systems such as health, housing or corrective services. Planners also need upskilling to provide culturally appropriate support to Aboriginal and Torres Strait Islander peoples and

1 COAG Disability Reform Council Quarterly Report 30 June 2019, National Disability Insurance Agency page 183 https://www.ndis.gov.au/about-us/publications/quarterly-reports 2 as above, page 95 3 as above, page 96

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people from culturally and linguistically diverse backgrounds to improve outcomes for these cohorts.

Too many Queensland participants are receiving plans which do not include the right mix, type, or level of supports to meet their needs. Of the 200 complaints about the NDIS and its administration, received by the Queensland Government in the last financial year, nearly one in four (24 per cent) related to insufficient supports in plans. Approximately half of all plans are increasing by more than 10 per cent upon initial review, suggesting insufficient supports were initially included.

Some plans are inconsistent with the agreed roles and responsibilities of the NDIS and other service systems as defined in the Applied Principles and Tables of Services (APTOS) and are therefore not including all the appropriate reasonable and necessary supports. This is affecting children in the child protection system, people in custodial situations including the youth justice system, and people transitioning from rehabilitation services or mental health facilities. In addition, participants are not receiving reasonable and necessary transport supports critical for them to achieve their economic and social goals. While the NDIS Act 2013 (Act) provides guidance on how to determine reasonable and necessary supports, this should be read alongside the APTOS. The APTOS is not being applied consistently. A Participant Service Guarantee should ensure participant plans include all reasonable and necessary supports, which are the responsibility of the NDIS in accordance with the APTOS.

It is essential for participants to have opportunity to review a draft version of their plan before it is submitted for approval. This is currently not the case. Reviewing a draft would enable errors or omissions in the plan to be corrected, and reduce the need for unscheduled plan reviews. In Queensland, the rate of unscheduled plan reviews is approximately 20 per cent, suggesting there is great scope for improvement in the planning process.

Plan utilisation

Between January 2018 and December 2019, Queensland participants used just 46 per cent of supports in their first plan, and by their fourth plan, were still only using 76 per cent4. This may be due to a number of factors, for example: participants having difficulty in understanding their plan, navigating the system and connecting with providers; a lack of providers in certain geographic areas; or a lack of providers of particular types of supports. Alternatively, a plan will not be fully utilised when it does not contain the right mix, type and amount of supports. Queensland calls for Support Coordination to be included in the first plan of every participant to ensure they understand how to utilise their plan and are assisted to connect with providers, unless the participant expressly declines this support. The NDIA, as market steward, must continue work on promoting a healthy and diverse market for supports and address supply gaps and thin markets, so that all participants have access to the supports they need. An analysis of underutilisation is urgently needed, and the NDIA should publish data on underutilisation by cohort and location to inform provider decisions about expanding their services.

Proposed service standards

Queensland supports the proposed principles in the discussion paper and the proposed service standards at Attachment A to that paper. The Queensland Government welcomes the opportunity provided by the Review to streamline processes and ensure participants receive timely, transparent decisions on access, and plans that include all their reasonable and necessary supports. This would enable participants to gain the full value of supports included in their plans. Queensland supports the amendment of the Act to include timeframes for decisions beyond the determination of access, including plan development and review. However, it is vital a Participant Service Guarantee becomes a driver of continuous quality

4 COAG Disability Reform Council Quarterly Report 30 June 2019, National Disability Insurance Agency page 213 https://www.ndis.gov.au/about-us/publications/quarterly-reports

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improvement, and does not become an exercise in compliance with the timeframes at the expense of participants receiving plans that meet their needs.

Accountability

A number of issues covered by this submission have been the subject of recommendations of previous inquiries, such as the Joint Standing Committee on the NDIS’s inquiry into Market Readiness. To increase accountability, the NDIA should institute regular reporting on the response to the recommendations from this review, and of other formal recommendations made to it by other Commonwealth Parliamentary committees or statutory bodies, such as the Productivity Commission or Commonwealth Ombudsman.

Other important issues for consideration as part of the review

The Review is an important opportunity to ensure NDIA processes are appropriate for exceptionally vulnerable participants, such as children in the child protection system, for whom the barriers to positive participant experiences is compounded by significant disadvantage.

The Review should ensure the lawful sharing of relevant participant information between the NDIA and mainstream systems (such as health, education and justice) is facilitated to support access and planning. These systems cannot adequately and safely plan for discharge/exit of participants, support participants whilst in the system, or divert participants attending courts from the corrections system, without access to their NDIS plans. In addition, NDIS plans should contain more comprehensive information such as hours of support to enable safe and sustainable discharge/exit. Continuity and sufficiency of support for participants, no matter what circumstances they are in, is essential. The sharing of plan information will enable responsibility for support to either be continued or transferred.

The current definition of NDIS provider in the Act means in-kind supports are outside the jurisdiction of the NDIS Quality and Safeguards Commission, requiring States and Territories to maintain separate quality systems. This creates a complex regulatory environment for providers and participants and the Review provides an opportunity to consider how to minimise confusion for providers and participants regarding quality and safeguarding requirements.

The body of this submission provides further information on these issues, and includes de-identified examples of the experiences of people with disability and their families.

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What could a Participant Service Guarantee look like?

General feedback on the proposed feedback and service standards

The Queensland Government supports the proposed principles and service standards included in the discussion paper. These principles and service standards have potential to:

  • Ensure all people with disability experience timely and respectful engagement with the NDIS, whether or not they become NDIS participants. The principles and service standards should cover people who engage with Local Area Coordinators or Information, Linkage and Capacity Building services but who do not become NDIS participants.
  • Enable people ineligible for the NDIS to be linked with other supports.
  • Ensure that participants are involved in thorough planning processes conducted by knowledgeable staff, resulting in plans that include all reasonable and necessary supports.

However, the standards could be enhanced with more specific measurable targets which would provide guidance on implementation and enable effective monitoring and reporting. For example, for some of the standards, participant satisfaction could be used as a measure.

In addition, the NDIA should be required to report quarterly against the service standards. Anecdotally, participants report the participant satisfaction outcomes included in the NDIA’s quarterly reports to the Council of Australian Governments’ Disability Reform Council are difficult to reconcile with their actual experience. This current survey would benefit from a review of its methodology, including how it is administered, sample size and the stage in the planning process when the feedback is collected.

To increase accountability and transparency, the NDIA should be required to report regularly against the recommendations of this Review, and against formal recommendations of the reviews of other committees such as the Productivity Commission and the Joint Standing Committee on the NDIS.

Specific feedback on principles

Timely:

  • Examples of Queensland participants not receiving timely responses to access requests or planning processes are provided throughout the submission.
  • Specific timeframes in a Guarantee should not compromise the quality of plans. The Guarantee should not become an exercise in compliance with timeframes at the expense of the primary aim of ensuring participants receive the supports they require.

Engaged:

  • Engagement with people with disability, their families, carers and other support persons when developing operating procedures and processes will ensure procedures take account of the lived experience of people with disability and their families.

Valued:

  • All people with disability engaging with the NDIS, whether or not they become participants, must feel valued and supported.
  • Clear guidance and support must be given on each step of the participant pathway, including on how to obtain further assistance through Community Connectors and Local Area Coordinators (LACs).
  • The service standard could set a target for the level of participant satisfaction and be measured by satisfaction surveys.

Expert:

  • The standard should acknowledge people with disability and their families are experts on the impact of the person’s functional impairment and their unique circumstances, and are best placed to determine what supports will be most effective.

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  • This standard relating to the knowledge of NDIA staff should be reframed to reflect that any person involved in planning should be open to ongoing learning.
  • Measures could include retention of NDIA staff expertise, training accessed by staff, and ensuring planners with relevant skills and knowledge are involved in planning.
  • Queensland’s rate of unscheduled plan reviews, excluding reviews in the first 30 days, is approximately 20 per cent, indicating there is great scope for improving planning. Reduction in unscheduled plan reviews not associated with participants’ change of circumstance could indicate planners are developing plans appropriate to participants’ needs.

Decisions are made on merit:

  • This standard concerns transparency of NDIA decision making so people with disability understand the reasons for the decisions. Transparency of NDIA decision making is essential. People with disability should be provided with clear reasons for a decision. In addition, they should receive information on what to do next, and how to obtain assistance.
  • This principle could be strengthened by including a reference to consistency in decision making, and the person’s satisfaction with explanations provided by the NDIA for decisions made and suggested further action. The associated standard could be measured by audits demonstrating consistency of decision making, and the number of appeals to the Administrative Appeals Tribunal.

Connected:

  • The standard concerns how the NDIA works with government, mainstream services, disability representatives and providers to ensure participants receive coordinated and integrated services.
  • Governments have agreed to a seamless interaction between the NDIS and mainstream services as a key principle for the NDIS5. Collaborative relationships at the local, state and territory, and national level are essential to realising this principle.
  • The standard should be stronger to include a requirement for the NDIA to work proactively to ensure that people with disability achieve integrated supports..

Accessible:

  • The principle should include specific reference to ensuring processes, resources and forms are easy for people with disability to access, understand and use.
  • The principle supports addressing the underrepresentation of people of Aboriginal and Torres Strait Islander people, people from culturally and linguistically diverse backgrounds and LGBTQIA+ people in the NDIS.
  • Consideration should be given to the inclusion of other vulnerable cohorts, for example young people in the justice system and the child protection system, who also experience difficulties with access.
  • Reporting on this measure is essential as there is currently no data reported on the extent to which socioeconomic factors impact on access to, or experience of, the NDIS.
  • Cultural capability should be a separate principle, reflecting its importance, and that cultural capability is far broader than the scope of accessibility.

Other key principles

Service quality and safety

A principle about ensuring the NDIA and the Quality and Safeguarding Commission’s processes consider participants’ service quality and safety should be added. For example, participants’ safety and quality of services should be expressly considered when developing plans and determining timeframes for planning and review. This principle should address the

5 Principles to Determine the Responsibilities of the NDIS, endorsed by Council of Australian Governments (COAG) in 2013, updated 2015 https://www.coag.gov.au/sites/default/files/communique/NDIS-Principles-to-Determine-Responsibilities-NDIS-and-Other-Service.pdf .

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sufficiency of supports in plans, access to quality services, participant safety, continuity of participant support, the separation of the provision of accommodation from disability supports, and timely responses to critical incidents.

No disadvantage

Where new NDIS participants who have previously received disability supports receive an NDIS plan that differs from their previous supports, the decision should clearly reference the principle, agreed to by governments, that no-one should be disadvantaged when transitioning to the NDIS6. The principle of no disadvantage should be considered not only when a person first transitions to the NDIS but when plans are reviewed, especially when a decrease in supports is proposed.

Progressive

An additional principle should be incorporated to reflect that the NDIS should be looking to best practice and supporting the use of newly proven technologies and evidence-based therapies.

Recommendations:

  • The Participant Service Guarantee should include the principles and service standards set out in the discussion paper, with the inclusion of the feedback in this response.
  • The scope of the principle regarding NDIA staff knowledge should be expanded to include any person facilitating planning, including LACs and Community Connectors. This principle should also be amended to reflect that people with disability and their families are expert in the impact of impairment on their lives, and their knowledge is central to determining appropriate supports.
  • The Guarantee should also include a principle regarding quality and safety, and a principle of no disadvantage.
  • The Service Standards at Attachment A in the discussion paper should be incorporated in the Guarantee with practical and concrete measures. The Standard on accessibility should require the collection and reporting on the extent to which socioeconomic factors affect access to the NDIS and participant outcomes.

6 Bilateral Agreement between the Commonwealth and Queensland: Transition to a National Disability Insurance Scheme, Schedule D, Clause 2 https://www.communities.qld.gov.au/resources/dcdss/disability/ndis/qldbilateralagreement.pdf

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The Participant Experience - Application and Eligibility

Current practical challenges in the Access process

Queenslanders with disability and their families are experiencing delays in the NDIS access process. In Far North Queensland, a participant waited five and half months for an access decision when the local assessor of access requests was relocated to another region without replacement, and all access requests were sent to Canberra for assessment.

Some of these access delays are due to the following procedural matters:

  • The Access Request Form (ARF) not being available online. Waiting for forms to be mailed delays the access process.
  • The NDIA requiring evidence of consent from a prospective participant before an ARF is provided. Anyone in the community should be able to access the ARF online or receive a copy of it by post without requiring evidence that a person with disability has given consent. The requirement to demonstrate consent should relate to submitting the form.
  • The National Access Team not accepting the Statutory Health Attorney or Next of Kin as the decision maker and advising that the family member should seek legal appointment as guardian through the Queensland Civil and Administrative Tribunal (QCAT). This process results in significant delays in the access process for prospective participants and causes distress to families. Increased, unnecessary referrals to QCAT to support NDIS access also creates delays in QCAT decision-making for other guardianship matters.
  • While a person in hospital may give consent for any member of the health care team to communicate with the NDIA, the NDIA will only share information with nominated staff. If these staff are not available due to leave, this results in delays in communication. At times, even though a staff member is nominated as a correspondence nominee, letters are sent only to the person in hospital, resulting in delays.

The following example illustrates some of the difficulties experienced by people who have impaired decision-making capacity in accessing the NDIS.

Mrs R’s story

Mrs R experienced a stroke resulting in significant physical impairment, and some communication and cognitive impairment.

Her partner made a verbal access request. During this process it was identified he was her Statutory Health Attorney and would be assisting her with decisions. An Access Request Form was obtained, which he signed and lodged on Mrs R’s behalf.

The NDIA rejected the form because it was not signed by Mrs R. The Local Area Coordinator (LAC) was contacted to attend the hospital and assist with the access request consent process. Despite numerous attempts to escalate the situation, it took two weeks for an LAC to attend the hospital, and a further two weeks to have the information logged by the NDIA. Mrs R waited 48 days for an access decision.

Many GPs and allied health professionals lack awareness of the disability requirements for access, and the information that must be provided to support an access request. More transparent assistance should be provided to assist health professionals to provide information about a person’s disability and associated support needs. This could be achieved by providing a “how to” guide, and/or by providing examples of completed forms for hypothetical individuals. This would reduce delays where a prospective participant is requested to provide further information in an access request process, or seeks an access or plan review.

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Cohorts experiencing additional access challenges

Children

Children are waiting for more than 50 days to access Early Childhood Early Intervention services 7. Early intervention ensures children have the best possible start in life. The Participant Service Guarantee should ensure children receive streamlined, timely access to ECEI services.

A significant issue for children in the child protection system is that the NDIS does not recognise delegated decision making. NDIS systems and legislation require a child to be represented by a single person and do not recognise entities or individuals acting in their professional capacity as delegates under child protection legislation. Child protection agency staff are unable to access NDIS plan information through the MyGov portal, disadvantaging children in care’s interaction with the NDIS, compared to other children. Full access through the portal would enable child protection staff to access the child participant’s plan, make service bookings, confirm payments, and update records.

People in custody

People in custodial settings lack internet access and have limited access to telephones, and have greater difficulty in finding out how to make an access request and obtaining the form. At the Disability Reform Council meeting on 9 October 2019, it was agreed the NDIA will establish Justice Liaison Officers in each state and territory to provide a single point of contact for workers in the justice system. These officers, together with the provision of targeted resources and training will assist to ensure a coordinated approach to supporting NDIS participants in the youth and adult justice systems. However, it is still necessary to address practical barriers to access.

People who are homeless or in residential services

People who are homeless may have difficulty gaining access to the NDIS as they have transient lives and face difficulties corresponding with the NDIA. Many people living in residential services have had negative experiences with government services and are therefore hesitant to engage with government agencies including making an access request to the NDIA.

People with psychosocial disability

The Productivity Commission’s inquiry into Disability Care and Support in 2011 estimated 13.8 per cent of participants would be people with psychosocial disability. At 30 June 2019, only 8 per cent of Queensland participants in the scheme have psychosocial disability, compared with a national average of 9.6 per cent8. Nationally, 33 per cent of people who had a primary psychosocial disability were found not to meet access criteria9. Of this 33 per cent, 94 per cent were found ineligible because they did not meet the disability access criteria10. A higher proportion of people with psychosocial disability who were accessing services provided by the Commonwealth or States and Territories prior to the NDIS met access criteria, compared to those who had not previously received services11. This indicates people with psychosocial disability are experiencing difficulty accessing the scheme.

Culturally and linguistically diverse people

The NDIA’s quarterly reports to the COAG Disability Reform Council show lower than expected levels of participation by people with disability from culturally and linguistically diverse backgrounds. One in five Queenslanders is born overseas, and more than one third are either overseas born or have at least one parent born overseas. In contrast, only 8.4 per

7 Media release 26 June 2019, the Hon Stuart Robert MP, Minister for the NDIS 8 People with a psychosocial disability in the NDIS 30 June 2019, National Disability Insurance Agency, page 5 9 as above page 9 10 as above page 10 11 as above, page 10

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cent of NDIS plans have been for culturally and linguistically diverse participants12. Increasing awareness of the NDIS among new migrants and providing interpreter services may increase participation rates for people with diverse backgrounds. Participant feedback should be gathered to highlight barriers experienced by these participants and provide insight into the reason for the low participation rate.

The Multicultural Queensland Advisory Council held a community consultation in April 2018 which focussed on NDIS workforce capability, including identifying and engaging people from culturally diverse backgrounds with disability in the NDIS, and taking advantage of employment opportunities within the NDIS. Key issues raised through this consultation were:

  • Lack of availability of interpreters, particularly in regional areas
  • Difficulties understanding the NDIS and what services are available
  • Many job opportunities exist but accessing and filling these roles are challenging.

A copy of the consultation report is available from http://www.dlgrma.qld.gov.au/resources/multicultural/policy-governance/qld-advisory-council/mcaq-community-consultation-report-26-april-2018.docx

Cultural competence is essential for planners to work in culturally appropriate ways and to develop plans that result in good participant outcomes. The final Evaluation of the NDIS conducted by Flinders University in 2018 reported that NDIA staff identified a range of hurdles to meeting the needs of, and working with, participants from Aboriginal and Torres Strait Islander and culturally and linguistically diverse backgrounds.

The NDIA should increase the data collected regarding cultural and linguistic diversity to enable identification of under- or over-representation of participants from particular backgrounds. Data should be collected on: country of birth, preferred language, whether an interpreter is required, and whether participants experience any additional barriers to their participation related to their cultural background or linguistic capabilities.

Priority should be given to making NDIS information and engagement resources available in Aboriginal languages.

People with impaired decision-making capacity

People with impaired decision-making capacity face particular challenges in accessing and participating in the NDIS. This issue was recently considered in great detail by the Queensland Audit Office in their report, Access to the National Disability Insurance Scheme for people with impaired decision-making capacity (Report 2: 2018-19). This report can be accessed at the following link https://www.qao.qld.gov.au/reports-parliament/access-national-disability-insurance-scheme-people-impaired-decision-making

Opportunities

People who find the process difficult to navigate are at risk of not following through to complete the access request. For example, people with psychosocial disability may disengage if they have negative experiences with the NDIA during the access process or if there is a delay to their access decision.

Proactive outreach could assist in identifying potential participants and enabling them to make an access request. Such outreach is also required to engage with cohorts who are likely to have difficulty navigating the NDIS including people coming into contact with courts, or specialist homelessness services, people living in residential services or who are in Authorised Mental Health Services, and people subject to the forensic orders. Liaison and consultation

12 COAG Disability Reform Council Quarterly Report 30 June 2019, National Disability Insurance Agency page 77 https://www.ndis.gov.au/about-us/publications/quarterly-reports

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with the relevant State entities may be required to facilitate improved rates of access to the NDIS for these cohorts.

Outreach should identify potentially eligible people and initiate support for them during access and planning. This is essential to ensure people are found to be ineligible because they genuinely have not met the criteria, rather than because they have not understood the access process or have been unable to appropriately and accurately evidence their disability.

Recommendations:

  • The Guarantee should require that access processes are streamlined with shorter but realistic timeframes, are easy to use and transparent, and that people receive appropriate support to properly complete an access request.
  • Proactive outreach should be provided to people who face additional challenges in accessing information about the NDIS and making an access request.
  • The National Access Team should accept ARFs made on behalf of potential participants by next of kin or statutory health attorneys.
  • Information sharing arrangements should be reviewed to enable the NDIA to communicate with any member of a potential participant’s care team.
  • Additional guidance should be provided for General Practitioners (GPs), health and allied health practitioners on how to complete the ARF.

Transparency in decisions

Communication about decisions made is difficult to understand and not transparent. For example, the letter advising a person has not met the access criteria quotes the relevant sections of the NDIS Act 2013, but does not provide the reasons for not meeting access in plain English. People with disability, their families and carers do not always understand the reasons why access was denied.

The letter, as with all communication, should use plain language and explain specific reasons for the decision, and the implications for the person. The letter should clearly explain the options a person could take in response, including the review process and type of evidence that would be required to support a review of the decision, and provide direction on how the person could receive assistance such as through LACs or Community Connectors and Information about Linkage and Capacity Building services. LACs and Community Connectors must be available across Queensland, including in rural and remote areas.

Improved transparency of decision making could be achieved by expanding the NDIA’s quarterly reporting to include reasons for delays in making access decisions, and reasons why people are found not to meet access requirements.

Recommendations:

  • The Guarantee should include the requirement that letters advising of ‘decision outcomes communicate the reasons in clear and simple language, and provide information about how to seek a review of the decision and where to obtain assistance.
  • The NDIA should include data on the reasons for delays in access decisions and reasons for people are found to be ineligible in its quarterly reporting.

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The Participant Experience – Planning

The NDIA’s most recent quarterly report shows 48 per cent of appeals made to the Administrative Appeals Tribunal concerned plans and a further 11 per cent related to plan reviews13. The issues impacting participant experiences of planning are well known and long-standing. For example, the report of the Joint Standing Committee on the NDIS’s inquiry into market readiness14 made the following recommendations:

  • Mandatory training for NDIA staff on plan approval and implementation
  • The NDIA to urgently allocate more staff and support to assist participants with plan implementation
  • The need to increase the funding and use of support co-ordination in plans.

More than 90 per cent 15of appeals lodged with the Administrative Appeals Tribunal (AAT) were resolved without a formal hearing. This suggests that there are matters arising for participants that could be resolved through improved planning. Access to independent advocacy is important, especially for vulnerable groups

Delays in the planning process, including plan review

The NDIA’s most recent quarterly report shows 40% of complaints about the NDIA in Quarter 3 of 2018-19 were about timeliness 16. This indicates insufficient resources are available to meet the demand for access decisions and plan development and review. Lack of staffing has a greater impact on participants in rural and remote areas.

The NDIA does not report on the time taken between an access decision and plan approval, however, many Queensland participants are waiting for several months to have their planning meeting after they have been advised they have met the access criteria. For example, one participant waited 10 months after receiving their access decision to receive an approved plan. This resulted in the family experiencing financial stress, as the mother had to reduce working hours to meet the child’s support needs.

People in rural and remote areas face additional challenges in participating in the planning process. They may be located a long distance from the base where planners are located, and transport options may be limited. Planning processes must take account of the impact of distance and the availability of transport in rural and remote areas by increasing flexibility through:

  • planners travelling to meet with the participant where the participant is unable to travel, and/or
  • offering alternative means of participation in the planning processes such as Skype where this is an appropriate, suitable option and chosen by the participant.

The impacts of delays in planning on participants are particularly evident at the intersection with mainstream services.

Child protection

Children in the child protection system who are turning 18 have difficulty obtaining plan reviews in time to ensure their plan meets their disability support needs when they leave care. Review

13 COAG Disability Reform Council Quarterly Report 30 June 2019, National Disability Insurance Agency page 96 https://www.ndis.gov.au/about-us/publications/quarterly-reports 14 Joint Standing Committee on the National Disability Insurance Scheme: Market readiness for provision of services under the NDIS, September 2018 pp xi – xiv. https://www.aph.gov.au/Parliamentary_Business/Committees/Joint/National_Disability_Insurance_Scheme/MarketReadiness/Report 15 COAG Disability Reform Council Quarterly Report 30 June 2019, National Disability Insurance Agency page 96 https://www.ndis.gov.au/about-us/publications/quarterly-reports 16 COAG Disability Reform Council Quarterly Report 30 June 2019, National Disability Insurance Agency page 95 https://www.ndis.gov.au/about-us/publications/quarterly-reports

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dates tend to be set two to three weeks before the child’s eighteenth birthday, leaving insufficient time to ensure supports are in place when they exit care arrangements, despite requests for early plan reviews from child safety staff.

Justice system

Planners should understand relevant aspects of the criminal justice system. For example, participants who are eligible for parole do not have a fixed release date, and require plans to be developed quickly to ensure a plan and associated disability related supports are in place upon their release into the community.

Hospital patients

Participants who are ready for discharge are remaining in hospital longer than necessary due to NDIS processes. For example:

  • One participant remained in hospital for five months after they were ready for discharge because necessary home modifications had not commenced. The participant was only able to leave hospital because the NDIA agreed to fund interim accommodation pending completion of the home modifications.
  • In another situation, a participant required a prosthetic limb in order to be discharged. The NDIS rejected expert advice on the type of prosthetic and the participant remained in hospital for four months while the dispute was resolved after which the person received their prosthetic.
  • A participant with psychosocial disability was living successfully in the community with State funded support. Their first NDIS plan offered less support than the participant was receiving previously. Due to insufficient supports, the participant became progressively unwell with multiple hospital admissions. Support was reduced again at the 12 month review. The participant’s mental health deteriorated further, resulting in the participant being admitted to an inpatient facility where they remained until discharged with a third plan 14 months later. These hospital admissions were avoidable had the participant’s plans included sufficient support.

Recommendations:

  • The Participant Service Guarantee should ensure participants experience timely plan development and plan review, including capacity for timely responses to crisis situations.
  • The NDIA must have capacity to adjust staffing levels to ensure there are sufficient resources to meet demand for plan development and review, particularly in rural areas.
  • Planners need an understanding of the child protection system and criminal justice system (including the youth justice system) to ensure participants receive timely plans and plan reviews, and participants are supported during transition from mainstream services.
  • Planners need to take into account the episodic nature of psychosocial disability which results in fluctuating support needs.
  • Approval processes for all support required for discharge from hospital, including home modifications and assistive technology must be streamlined to ensure people do not remain unnecessarily in hospitals.
  • The NDIA should report against the findings of independent inquiries into the operation of the NDIS.
  • Planning process should include capacity to provide flexible responses to people in rural and remote areas.

Planning processes and planner expertise

Process issues

Anecdotally, participants report practical issues in relation to planning processes are impacting on the quality of plans. The following example illustrates this issue.

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Mrs Y’s story

Mrs Y’s planning meeting was held in the hospital, with her family members and the allied health team present. Questions were directed only to Mrs Y, and if she was unable to answer them due to her cognitive and communication impairments, the planner moved on. Mrs Y’s family members and the allied health team had to interrupt the planner frequently to ask if they could assist in answering the questions. The planner did not acknowledge or reference the reports sent by the allied health team prior to the meeting.

The planner suggested Mrs Y did not need the assistive technology recommended by the allied health team, but could “make do” with an alternative. Mrs Y ultimately received the recommended assistive technology after the allied health team undertook extra work to draw attention to risks to her safety should she use the alternative suggested by the planner.

Inconsistency in planning outcomes

Participants with similar needs and in similar circumstances are receiving plans with differing levels and types of supports, as the following example demonstrates.

Two young men, similar needs, very different planning outcomes

Two young men in the child protection system with the same diagnosis, living in the same region, had their plans developed by the same planner. One young man lived with a foster carer until his eighteenth birthday, after which it was planned he would move into supported accommodation. His plan included $100,000 in core supports to meet the goal of moving into independent living arrangements.

The other young man also needed to move from his existing accommodation on turning 18. He received a plan which included only $12,000 in core supports to meet the goal of moving into independent accommodation. This amount was insufficient, and placed him at risk of homelessness. A request for an urgent unscheduled plan review was denied, as the planner stated the young man first had to use all the available funding.

While plans should reflect differing individual needs and context, considerable variation between plans for people with similar needs has raised concerns about inequities resulting from planners’ varying knowledge and practices. While the NDIA has implemented training, the experience and qualifications of planners continues to vary greatly. In Queensland, many planners have limited skills and experiences in working with people with complex needs, including those with psychosocial disability, multiple impairments, spinal cord or acquired brain injury, and newly acquired disability, and children in the child protection system. Many planners also have limited capacity to support participants in custodial settings and people from culturally and linguistically diverse backgrounds.

The NDIA has implemented a Complex Support Needs Pathway that includes a panel of dedicated planners. The process for a participant to be referred to the pathway is internal to the NDIA, and Queensland Health staff report that participants experience difficulties gaining access to this pathway. The capability of the team to deal with the level of complexity of the participants referred to the pathway, and the capacity to provide a timely response, is not yet clear as its implementation in Queensland is not yet complete. The NDIA is currently recruiting specialist planners for the Complex Support Needs Pathway in Queensland, and advises the majority of these planners will be allied health professionals with experience in supporting people with complex needs.

In Queensland’s experience, plan quality and participant outcomes are improved when planners are allocated to work with specific cohorts, as they build understanding and skills in working with that cohort. It is also important that recognition is given to the needs of participants with multiple disabilities, and planners need understanding of the interaction between disabilities and the support needs arising from them.

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The importance of considering housing in planning conversations

Housing is essential to achieving independence and whole of life outcomes, and early conversations with participants should include discussion of the participant’s housing goals. Planners need to be able to identify a range of possible options across the housing continuum, as social housing is not an appropriate response for all participants. Queensland has offered to collaborate with the NDIA on the development of housing prompts for planners to assist them to identify immediate and long-term housing needs and preferences.

While states and territories remain responsible for housing, the NDIA is responsible for stimulating the supply of Specialist Disability Accommodation (SDA). Queensland has called on the NDIA to make available granular data to identify supply gaps for SDA.

The below example demonstrates how issues at various points in the planning process can combine and result in poor participant experience and outcomes.

Mr T’s story

Mr T and his family are recent migrants to Australia, with limited ability to communicate in English. The family were unfamiliar with the health system and the NDIS. Mr T was in hospital for an eight month period in a region a long distance from where his family were seeking accommodation.

Mr T’s planning was conducted by a Local Area Coordinator (LAC). Due to high staff turnover Mr T had contact with three LACs during the access and planning process. The LACs, the planner, and the Support Coordinator did not have the experience required to work effectively with the complexity of Mr T’s situation. The combination of cultural and linguistic diversity, interfaces with the health and housing systems, newly acquired disability, and geographic separation from family presented a particularly complex scenario.

The NDIS planner did not arrange for an interpreter to be present on the day of the planning meeting. Mr T’s family had travelled a long distance to attend the meeting. Lacking funds for motel accommodation, the family had no option but to come back on another day when an interpreter could be arranged.

Mr Ts plan did not include additional supports to move him into short term accommodation closer to his family. This meant he could not be involved in decision-making while his family tried to find a place for them all to live. Mr T’s plan did not include sufficient allied health funding, and he did not receive funding to explore housing options despite participants with similar disability support needs having this funding in their plans.

Mr T was eventually discharged from hospital to live with his family. On discharge, it was found that his daily support needs were higher than the supports funded in his plan. This placed increased demands on his family relationships, and strain on the caring arrangement. An unscheduled plan review was required soon after the first plan was approved.

This example illustrates a number of issues in the planning process

  • The LAC did not provide the planner with sufficient information about Mr T’s situation to enable an appropriate plan to be developed. Poor information transfer is likely to have been exacerbated by the high turnover of LACs.
  • The planner lacked competency in working with people with complex needs. The planner did not consider the impact of the family’s culturally and linguistically diverse background.
  • The planner should have checked information on the Access Request Form about the participant’s communication needs and the LAC should have highlighted the need for an interpreter.

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Recommendations:

  • Planners should have sufficient understanding of disability (including that supports may be required for a participant’s secondary disabilities) to conduct a thorough planning process and develop plans that meet participants’ disability related support needs.
  • Planners should ensure planning processes are adapted to suit participant needs and maximise participant involvement.
  • Planners should have a good understanding of how mainstream services operate and should be familiar with a range of possible housing options. The NDIS should publish information on demand for SDA, such as location, what type of dwellings, and the timeframes in which accommodation is needed.
  • The NDIA should develop prompts to assist planners in understanding participants’ long and short-term housing needs, goals and preferences. Planning conversations should occur as early as possible due to the long timeframes often involved in accessing appropriate housing.
  • The NDIA should allocate planners to work consistently with specific cohorts, however all planners should, over time, gain experience in working across a number of cohorts.
  • Specialist connectors and planners should be allocated to NDIA regional offices in close proximity to correctional centres and courts as this will improve access for participants who are prisoners and in contact with the justice system.
  • The NDIA should recruit planners who have experience in working with participants who have complex needs. Senior planners should work with participants with complex needs, including children in the child protection system.

Plans must include all reasonable and necessary supports

For a range of reasons participants are receiving plans that do not include all of their reasonable and necessary supports. In 2017-18, Queensland received over 200 complaints about the NDIS and its administration. Of these, 24 per cent related to insufficient funding in plans. This percentage is trending upwards in quarter 1 of 2019-20.

Transport supports: The NDIA is not funding reasonable and necessary transport supports for NDIS participants, although the APTOS clearly states the NDIS is responsible for funding “costs associated with the use of taxis/private transport for people who cannot travel independently or use public transport due to the impact of their impairment/s on their functional capacity”17. The NDIS is including transport supports at the level of the Mobility Allowance, which was a Commonwealth allowance intended to offset the costs of transport for people participating in employment, volunteer work, or study.

Through the Taxi Subsidy Scheme, the Queensland Government has paid participants’ transport supports since 2017. Until the recent meeting of the Disability Reform Council (DRC), the NDIA has failed to recognise the scheme’s responsibility for all transport needs (including to interact with the community, shopping for groceries and for appointments with the doctor), not only those related to economic participation. On 9 October 2019, the Disability Reform Council endorsed an approach to improve the provision of transport supports under the NDIS and agreed States and Territories will be reimbursed for the continuation of their schemes for NDIS participants until longer-term transport support policy and funding is resolved.

Recent Administrative Appeals Tribunal (AAT) decisions, such as David and the National Disability Insurance Agency [2018](8 August 2018), support NDIS participants’ applications

17 Principles to Determine the Responsibilities of the NDIS and Other Service Systems, November 2015, page 20 https://www.coag.gov.au/sites/default/files/communique/NDIS-Principles-to-Determine-Responsibilities-NDIS-and-Other-Service.pdf

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for increased transport funding and reflect AAT concerns about the NDIA’s reliance on the NDIA’s standard transport support levels, rather than focusing on statutory criteria applied to individual situations. The AAT, in its public decision records, has noted concern about the NDIA’s unwillingness to assess individual circumstances when allocating transport funding.

To ensure participant choice and control, participants should have flexibility in using their funding, including options such as the use of taxis, Uber, ride-sharing, or community transport options. Plans for participants in rural and remote areas should include sufficient transport supports to enable them to implement all the supports in their plans.

Children in the child protection system: The NDIA is inconsistently funding respite, Support Coordination and core supports for children in the child protection system, and Support Coordination has been removed from plans, on the false assumption these supports will be provided by Queensland’s child protection agency. An appeal heard through the AAT overturned the NDIA’s decision to remove Support Coordination from the plan of a child in foster care (LNMT and National Disability Insurance Agency (2018) AATA 431), noting that Support Coordination is most appropriately funded by the NDIS. Children and young people in the child protection system should have Support Coordination included in their plans to assist them in connecting with providers and mainstream supports, given the complexity of their situations.

It is crucial that the NDIS review internal decision making and communication to ensure that vulnerable children are not disadvantaged because of the misperception that being in the child protection system reduces the child’s need for NDIS support.

According to the agreed roles and responsibilities set out in the APTOS, the NDIS will fund supports required due to the impact of the child’s impairment/s on their functional capacity where a child with disability is in out-of-home care and has support needs that are above the needs of children of a similar age18. The statutory child protection system is not responsible for providing disability supports beyond making reasonable adjustments to meet the needs of children with disability.

Recommendations:

  • The Participant Service Guarantee should ensure participant plans include all reasonable and necessary supports, having regard to the APTOS in addition to the guidance around determining reasonable and necessary supports in the Act. The review should consider how to ensure the AAT could be required to have regard to the APTOS when reviewing NDIA decisions.

Participants must have opportunity to review a draft of their plan

Currently a draft NDIS plan is not provided to the participant prior to approval. Where a participant, or prospective participant is in hospital, it may be beneficial for the health care team to also review the draft to ensure their advice has been incorporated. The opportunity to review a draft plan would reduce duplication of effort, ensure resources are not wasted on avoidable reviews due to errors and omissions, and ensure participants receive adequate support from the outset. Queensland has one of the highest rates of unscheduled plan reviews in Australia (21.2 per cent)19. This rate could be reduced through participants reviewing a draft of their plan, and through developing the skills of planners.

18 Principles to Determine the Responsibilities of the NDIS and Other Service Systems, November 2015, page 11 https://www.coag.gov.au/sites/default/files/communique/NDIS-Principles-to-Determine-Responsibilities-NDIS-and-Other-Service.pdf 19 Report to COAG Disability Reform Council Quarter 4, 2018-19, Table H34, page 197

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Examples of errors, which could have been identified and corrected at a draft plan stage, include:

  • the participant’s choice of plan management option (self-management, plan management, or management by the NDIA) was not correctly entered on the plan
  • support coordination was not included in the plan
  • goals were recorded incorrectly
  • the plan did not include sufficient funding to provide the roster of supports discussed
  • the plan did not record necessary assistive technology that had been discussed.

Recommendation:

  • Participants, their families and, where appropriate, the person’s health care team in hospital should have the opportunity to review a draft plan and make amendments where necessary before the plan is submitted for approval.

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The Participant Experience - Using and reviewing plans

Low utilisation of supports in plans

At 30 June 2019, Queensland participants utilised only 46 per cent of supports in their first plan 20. While the NDIA maintains that utilisation increases over time as participants gain experience in navigating the scheme, it is of great concern that Queensland participants are using only slightly more than three quarters of the supports in their fourth plan (76 per cent).

Low utilisation may be due to participants and their families having difficulty identifying and negotiating with providers, and providers being unavailable in some geographic areas or for some types of supports. It may also be due to plans being developed which do not reflect participant needs, in which case the plan will not be fully utilised. There is evidence that in Queensland participants are using less than half their capacity building supports. These supports are integral to improving participant social and economic outcomes

The shortage of Specialist Disability Accommodation (SDA) is a contributing issue. Participants eligible for SDA can have amounts for SDA allocated in their plans but, due to the shortage of appropriate dwellings, be unable to use them. The NDIA has an important role in stimulating the supply of SDA. The NDIA should release detailed information by cohort and location about all underutilised supports to inform provider decisions regarding entering the market or expanding services, including the provision of SDA.

There are some reports that service providers are not accepting participants with extremely complex needs, meaning these participants cannot utilise their supports. Participants report long delays in receiving assistive technology or in implementing home modifications, which also contribute to low utilisation.

Nationally, participants in very remote areas used only 39 per cent of the supports committed in their plans compared to 69 per cent in urban and major regional centres21 .Queensland participants in rural and remote areas have low rates of plan utilisation22. There are fewer support options in these areas and participants are often required to join a waiting list for services.

Organisations in rural and remote areas often lack necessary infrastructure to expand service provision. For example, an organisation in another state has commenced operating in Queensland, and as a result has more than doubled its staffing. The organisation aims to construct new short-term accommodation, in response to a lack of services in the region, but is hampered by a lack of resources. There is a need to explore innovative and collaborative opportunities to develop accommodation, including short-term accommodation, in rural and remote areas to ensure equitable access to services.

As market steward, the NDIA has a range of options to intervene in thin markets or in instances of market failure and to build market capacity to meet demand. Options range from providing information on supply gaps to directly procuring services. Until the market matures, participants must be able to use the funding in their plan flexibly in order to meet their needs.

An investigation into underutilisation is urgently needed. This investigation should consider whether plans are appropriate in the first instance, that is, they contain the right mix of supports to meet participant needs. The NDIA has a responsibility for enabling markets from which participants can purchase the supports they need. Publication of information about demand

20 NDIA Report to the Council of Australian Governments’ Disability Reform Council for Quarter 4, Year 6, July 2019 page 200 21 as above, page 112 22 as above, page 215

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for supports, by cohort and location, is essential to inform provider decisions about expanding service provision.

Recommendations:

  • The NDIA should investigate and report on underutilised supports.
  • Planners should allocate plan funding in ways that enable participants to use their plans flexibly while waiting for services.
  • The NDIA should ensure sufficient supports are available in rural and remote areas, and for cohorts with complex needs.

Support coordination

Support Coordination can help a participant understand how to use and get the most from their plan, link them with mainstream supports, and assist them to connect and negotiate with service providers. Support Coordination may continue to be required for participants who are unable to build capacity to connect with service providers and mainstream services, or live in areas where thin markets exist.

While the intent of Support Coordination is to build participant capacity in making the most of their plan, this may not be possible for all participants. Support Coordination should not be withdrawn where a participant continues to require this service. Support Coordination may continue to be required by people who have complex needs, people with psychosocial disability, and people in rural and remote areas, including people living in discrete Aboriginal and Torres Strait Islander communities.

Recommendations:

  • Support Coordination should be included in all plans, for at least the first year, or at least for all new participants, including participants with newly acquired disability, unless the participant specifically declines this offer.
  • Participants should receive Support Coordination based on individual needs and circumstances, as not all participants will gain capacity in linking with providers and mainstream supports.
  • Participants and their families should be assisted to engage a Support Coordinator.

Reviewing plans

Key stakeholders and nominated representatives are not receiving sufficient notice of review dates, meaning participants do not have sufficient opportunity to prepare and gather sufficient and appropriate evidence for plan reviews. Lack of notice may also result in participants not being adequately represented in review meetings.

Plans that were not fully implemented are being reduced at the time of review. Where supports have not been fully utilised, reasons should be identified and, where appropriate, the revised plan should include Support Coordination to assist participants to make full use of their plans. Queensland has experienced varied results with the review process for children in the child protection system. Where local staff have relationships with the NDIS and can organise review requests locally, the process operates smoothly. However, as the following example shows, in some circumstances participants are discouraged from seeking a plan review. Without timely review, participants can remain longer than necessary in the corrective services system or youth detention, or health facilities, or be left without appropriate supports.

Young Person C’s story

Young Person C had an NDIS plan completed whilst in youth detention two months before they were released. The Child Safety Service Centre requested this be reviewed. The NDIS planner would not support the development of a full plan until the young person was released. Following the review, the young person received a plan including Support Coordination only.

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The young person then needed another planning meeting post release. This required extensive coordination to arrange, and the meeting covered the same matters previously discussed. This plan only included Support Coordination and funding for a functional capacity assessment. This young person has now been provided with three plans in a seven month period and still has no supports to meet their day to day disability support needs.

Recommendations:

  • Participants should be advised sufficiently in advance of a review to allow them to prepare and ensure people they choose to support them in the planning process are available to accompany them to planning and review meetings.
  • Review processes must be timely, consistent across regions, and not dependent on local relationships.
  • Planners should be provided with training to understand operations of the criminal justice system, including the courts, to ensure plan reviews are conducted prior to release to ensure prisoners have an active NDIS plan in place when they return to the community.

Appealing a decision by the NDIA

Unlike the access decision, the Act does not specify a timeframe in which a review of a decision must be made, other than the statement “as soon as reasonably practicable”. Decision reviews are not timely — in one situation in Queensland a review of an access not met decision took nine months.

The option of engaging in an Alternative Dispute Resolution or mediation process should be available. This may alleviate pressure on the Administrative Appeals Tribunal, be more accessible to participants and provide a further internal review checking mechanisms to ensure decisions (that have lifelong implications) are appropriate

Recommendation:

  • The Act should include a timeframe within which a review of a reviewable decision must be made.
  • Consideration should be given to establishing an alternative dispute resolution process.

Removing red tape from the NDIS: The Legislative Framework

Information sharing arrangements

Clear information sharing arrangements between the NDIA and mainstream services are required. For example, Queensland Corrective Services (QCS) QCS relies on a participant to inform QCS of their NDIS participant status and give consent for QCS staff to see their plan. If QCS were to provide a list of people with disability who have come into custody to the NDIA and the NDIA then indicated which of these people have access decisions or plans in place, QCS could better support participants in developing a plan and ensuring they receive any reasonable and necessary supports that can be delivered in a custodial setting. This arrangement would also assist participants who have entered rehabilitation, and people on forensic orders (both disability and mental health).

The Review should clarify whether this arrangement could be entered into under Section 66 of the Act and Part Five of the National Disability Insurance Scheme (Protection and Disclosure of Information) Rules 2013 which provide the NDIA CEO with the power to disclose information to the head of a State Government department ‘for the purposes of the relevant Department’.

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Clarifying sections of the Act

Proposed legislative amendments arising from the 2015 review which would benefit from clarification include:

  • s55: outlining the circumstances where the NDIA CEO should obtain information about people who have not yet made an NDIS access request to ensure the integrity of the NDIS.
  • s90: Before suspending or cancelling the appointment of a nominee, there should be a requirement to ensure the CEO has taken appropriate steps to consider circumstances in which an applicant will still wish a nominee to continue as a nominee, even if they are no longer the participant’s guardian.

Recommendations:

  • Improve information sharing arrangements and opportunities for proactively identifying potential participants in mainstream services including custodial centres and health facilities, and for people on forensic orders.
  • Clarify section 55 and section 90 of the NDIS Act 2013.

In-kind supports

The Queensland Government provides Accommodation Support and Respite Services on an in-kind basis. In-kind supports are not within the jurisdiction of the NDIS Quality and Safeguards Commission (the Commission) due to the definition of “NDIS provider” in the NDIS Act. Queensland has retained its full suite of quality and safeguards in the Disability Services Act 2006 and other applicable legislation to ensure in-kind supports continued to be properly regulated.

Where participants receive supports both funded by the NDIS and the Queensland Government’s in-kind services, confusion may arise regarding the applicable quality and safeguard arrangements.

Recommendation:

  • Queensland suggests the Review consider opportunities to simplify or harmonise quality and safeguarding arrangements when dual regulatory frameworks apply (NDIS Act and State/Territory Government legislation) to avoid unnecessary complexity for participants and providers.

Thank you for the opportunity to provide a submission.

If you have any further questions in relation to the Queensland Government’s response, please contact:

Ms Elizabeth Bianchi
Executive Director, Strategic Policy and Legislation
Department of Communities, Disability Services and Seniors
(07) 3027 2467

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