Level 8

Department of HEALTH Manunda Place 38 Cavenagh St, Darwin, NT, 0800

Postal address GPO Box 40596 Casuarina, NT, 0811

e officeofthechiefexecutive.doh@nt.gov.au Ms Bonnie Allan te T 08 8999 2669 Committee Secretary Joint Standing Committee on NDIS File reference PO Box 6100 EDOC2022/406258 Parliament House Canberra ACT 2600 Via Email: ndis.joint@aph.gov.au

Dear Ms Allan

I refer to your email dated 9 September 2022 inviting Northern Territory Health to provide a written submission for the Joint Standing Committee on the NDIS - Inquiry into the Capability and Culture of the NDIA.

On behalf of Northern Territory Health please find enclosed a written submission which addresses issues of relevance within our jurisdiction.

Thank you for the opportunity and we look forward to reviewing the outcomes of the inquiry once it is finalised.

Yours sincerely

Dr Frank Daly MBBS FACEM GAICD FLWA Chief Executive 14 October 2022

October 2022

Northern Territory submission to the Joint Standing Committee on the NDIS - Inquiry into the Capability and Culture of the NDIA

Summary

On behalf of Northern Territory (NT) Health, the Chief Executive provides this written submission addressing issues of relevance to NT for the Joint Standing Committee on the NDIS - Inquiry into the Capability and Culture of the NDIA.

Noting that the Joint Standing Committee on the NDIS will inquire into and report on the implementation, performance, governance and administration of the National Disability Insurance Scheme (NDIS), with particular reference to:

(a) the capability and culture of the National Disability Insurance Agency (NDIA), with reference to operational processes and procedures, and nature of staff employment;

(b) the impacts of NDIA capability and culture on the experiences of people with disability and NDIS participants trying to access information, support and services from the Agency; and

(c) any other relevant matters.

Relevant stakeholders in the five health service regions of NT Health have provided feedback and comment as collated below.

Northern Territory context

The NT has a vast geographic footprint across the northern part of Australia covering an area of 1,349,129 square kilometres, with only 1% of the national population. Half of the NT’s population live in Darwin, Palmerston and Alice Springs, and the other half living in remote, very remote and regional areas. Territorians living remotely are predominantly Aboriginal people who reside in one of 600 communities or remote outstations.

The NT’S young Aboriginal population is growing and its non-Aboriginal population is ageing and largely transient. The NT has one of the most diverse Aboriginal populations, with over 100 different Aboriginal languages still in use across the Territory.

The NT population’s burden of disease per person is 80 percent higher than the total Australian population. The NT’s population has the lowest health outcomes in Australia, high levels of social disadvantage and many live with the burden of disease. Most Territorians with these challenges are Aboriginal people.

Public health services are provided through six public hospitals, including two in Darwin, one in Alice Springs, Tennant Creek, Katherine and Gove. Primary health care is provided in 74 Primary Health Centres including clinics run by Aboriginal Community Controlled Health Organisations.

According to the NDIS website, 4,963 people in NT are participants of NDIS.

Capability and culture of the NDIA

The following comments are offered regarding the capability and culture of NDIA with reference to operational processes and procedures, and nature of staff employment:

Acute/Tertiary Hospital interface with NDIA

• The interface with the NDIA for the acute service areas of Royal Darwin and Palmerston Hospitals (RDPH) involves the facilitation of discharge of patients from the hospitals. There are in place various mechanisms for communication, escalations and providing feedback to the agency. In summary clinicians and managers state that the NDIA is a complex and bureaucratic system, with the multiple divisions making it difficult to understand who is best to be contacted regarding patients and issues. Despite requesting a map of agency structure on several occasions this has not been provided. The NDIA also seems to be constantly evolving and changing making it more difficult to understand the relevant structures and divisions.

• The NDIA has well documented Key Performance Indicators (KPIs) that do not align with facilitating a timely hospital discharge. If a discharge goes smoothly and is in line with NDIS KPIs it can still be expected that the medically well patient will be in hospital for 3-6 months as the best case scenario. In some examples discharge time frames have been in excess of a year. In the hospital system there is an urgency to discharge medically well patients from hospital, however health professionals are frequently told that the time frame for review by NDIA is still “within the KPI of 6 weeks”

• The Hospital Liaison Officer (HLO) is a useful role, although it is noted that the functions of the role have changed over the past 12 months leaving some lack of clarity on the current scope of the role. It is also noted that HLO’s are less responsive than they were 12 months ago, possibly due to restructuring and the HLOs now sitting under the Hospital Discharge team. It would be beneficial to have this role better integrated with the hospital system.

• The Hospital Discharge team for RDPH was reportedly stood up a number of months ago (possibly six months). The key contact for RDPH NDIS patients is yet to meet the team. Previously there was a strong interface and regular meetings with the NT team but this was ceased following a “restructure” of teams and work allocation. It is felt this has been a backwards step for relationships with the NDIA. It was noted there is a meeting scheduled for November 2022 and they hope things improve again.

• Health interface issues persist with health staff often providing service to NDIS participants where they deem high risk is involved (e.g. swallowing issues) yet the NDIA either cannot act quickly enough, or does not see the link between the health issue and the disability and therefore intervention for the issue is not included in the participant’s plan.

• Equipment issues exist, particularly for participants due to be discharged from hospital and requiring equipment. NT Health is often approached to provide equipment as NDIA cannot organise the equipment in a timely manner.

Regional Hospital Interface With NDIA

• Many of the challenges faced at Katherine Hospital when dealing with the NDIS/NDIA comes down to a lack of communication on the part of the NDIS staff they are dealing with, the client, and some coordination support staff are better than others.

• There is a serious lack of Cultural Awareness and Cultural Safety – our staff ask “are there any First Nations people working with the NDIS? The NDIA staff we were dealing with had no concept of Sorry Business, and not every First Nations person wants to run out on the field with an AFL star” – it is stereotyping Aboriginal people and very unhelpful.

• Often contacts at NDIS may not be the right people for aparticular particpant’s issue but they can extremely helpful getting information for NT Health staff from the right intake officer or planner.

• It is observed that the NDIS has an aversion to placing women with a disability into a safe Supported Independent Living (SIL) accommodation due to cost, even if they are waiting on their SIL to escape domestic violence. It cannot be more cost effective to leave a woman who needs fulltime support in a situation that endangers her life.

• The NDIS positions should be held by suitable qualified people – for example: those with a lived experience of disability, Social Workers, Psychologists, or Nurses – if NOT having a lived experience of disability, they will at least have an educated view of the experience for a person with a disability and how to work with and make improvements for people.

• A woman was on the ward at Katherine Hospital for 10 months awaiting her NDIS funding plan and placement. Throughout that time the NDIS staff communicated with Katherine Hospital staff on only four occasions.

• The NDIS participants who are admitted to Katherine Hospital cannot answer questions about their NDIS packages – if is it lack of NDIS Literacy, through no fault of the client, it must reflect back onto the NDIS.

• NT Health staff report that many clients leave planning meetings without knowing what NDIS is, how the scheme works and what they can access.

• There are also issues around the logistics of planning meetings. NT Health are often involved in facilitating logistics of an NDIS planning meeting, as a result of communication breakdown between the NDIA and remote participants.

• Considerable amounts of time spent in meetings discussing issues with no discernible outcomes and lengthy delays to gain acknowledgment of issues by NDIA staff. NDIA meetings often centre around the convoluted and detailed processes to get a participant to ‘access met’ stage whereas from the perspective of health staff nothing changes for the participant until they access interventions, receive equipment or are moved into suitable accommodation.

  • Capability of NDIS planners

• NT Health staff have observed that participant experience and outcomes are negatively impacted by the NDIS planners lacking skills, knowledge and experience in disability. This impacts the way in which planning meetings are conducted and the level of support included in a participant’s plan.

• NT Health staff have observed a trend where individuals and families with high health literacy receive a greater level of funded supports in their NDIS plan, compared to those particpants who are less able to participate and self-advocate during the planning process.

• Planners rarely have the skills or capacity to support those less able to advocate for themselves, resulting in inadequate supports identified in plans.

• At times inconsistent and surprising decision making is noted – for example a local participant was provided with a guitar as part of his plan.

  • Information sharing between NDIA and other agencies

• Staff and families report that lack of information sharing between the NDIA and other agencies is one of the primary barriers to navigating the scheme efficiently.

• There are significant issues around participants needing to call the NDIA or sign a consent form to enable information sharing with healthcare providers. Consent forms around information sharing are written in complex ‘legalese’ and remote participants rarely understand what they are signing.

• Allied Health and Medical reports to support NDIS access requests are not shared with the participant’s CoS and treating therapists. This results in duplication of assessment and information needing to be repeated by families, carers and/or participants.

• There are limited incentives for the CoS and treating therapists to collaborate and take a multi- disciplinary approach to supporting the participant.

• Communication with participants in remote areas

• There is very poor communication between the NDIA and participants/potential participants in remote and very remote areas.

• There is reliance on third parties (for example: NT Health) to facilitate communication with the NDIA.

• Issues include:

  • Reliance on a centralised call centre and generic email address for contact with the NDIA. Remote and very remote participants rarely contact the centralised call centre due to lack of contextual knowledge and lack of appropriate support to navigate the system.
  • Reliance on individuals or carers having a phone for the NDIS access process to proceed.
  • Limited options for face-to-face appointments or discussions with the NDIA in remote areas.
  • Limited communication and information sharing when a participant moves between communities.

• People living in remote areas including outstations with limited access to mobile coverage (or who change phone numbers) are frequently deemed ‘uncontactable’ and access not met. This has also been observed for people who are participating in ceremony and other cultural obligations.

• NT Health staff report difficulty with phone calls to the NDIS, where discussions and actions taken are not recorded and/or shared between staff in different parts of the agency

• Cultural safety

• The NDIA has a reputation for a lack of cultural safety and poor cultural responsiveness in the processes of pre-access, access, planning and review.

• Many Aboriginal clients who are involved with the NDIA have not had the process explained properly to them which means they do not know what their rights are, what they can access from NDIA, the name of their COS provider or how to contact them.

• Other issues around cultural safety include:

  • Poor interpreter utilisation
  • Insufficient Community Connector workforce
  • Lack of support for existing Community Connectors
  • Reliance on centralised call centre and generic email
  • Standardised assessments being completed out of context.

Transparency & consistency of access decisions

• A lack of consistency in access decisions is reported by NT Health staff, with different outcomes for individuals with similar levels of disability and support needs.

• There is a lack of transparency around access decisions. ‘Access not met’ letters are vague and do not support individuals or healthcare providers to understand the reasons for the access decision.

• There is not a clear pathway for individuals to challenge access decisions or seek further information about why a decision was made.

• Community Allied Health have provided the feedback to multiple internal reviews (by the NDIA) with no apparent improvement in their capability.

Aged Care interface with NDIA

• NDIS planning and plan review processes are slow, requiring recipients and eligible recipients to undergo Aged Care assessment for approval to access interim care in residential aged care (residential respite care) until approved for Supported Independent Living (SIL).

• Recipients waiting for prolonged periods (in some instances over 12 months) in residential respite care for appropriate SIL accommodation to be arranged.

Correctional Services interface with NDIA

• There were meant to be NDIA correctional liaison officers employed across the Top End and Central Australia. While the NDIA Health Liaison Officer role was operationalised and currently provides support to the RDPH, the staff at Population and Primary Health Care Prison Health have never seen or been contacted by this staff member.

Mental Health Services interface with NDIA

• The improvements in the Mental Health/NDIA interface are small in nature and there is still a significant improvement required, but nonetheless there has been a positive change.

• There has been more communication and collaboration with the NDIA than previously between Top End Mental Health Alcohol & Other Drugs Services (TEMHAODS ) and the NDIA. Fortnightly meetings have been established between the NDIA Hospital Liaison Officer and key TEMHAODS staff (Director Allied Health, the Occupational Therapist from Inpatient Unit (IPU) and Social workers from the community teams) where current or potential NDIS patients are discussed and information shared to inform the clinicians as to next steps required for the NDIS process. It is found that some inpatients have NDIS plans, but the plans are inadequate to support discharge or that they require entry into the NDIS. This change has been led by TEMHAODS, but the NDIA have proved responsive.

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Impacts of NDIA capability and culture on the experiences of people with disability and NDIS participants trying to access information, support and services from the Agency

• For the majority of rural and remote clients, funding and/or services with diagnostic capacity are not available to support paediatric clients who need a neurodevelopmental diagnosis to be eligible for full scheme.

• Children ageing out of Early Childhood Early Intervention (ECEI) category without a diagnosis are being “lost” in the transition from ECEI to the full NDIS scheme (6-7 years old)

• The NDIS has a tendency to approach issues raised that have a systemic basis as individual cases to be solved – e.g. lack of market for ECEI services has been discussed and a sample of 10 children transferred to NDIS investigated as a case example of the lack of market available and/or difficulties engaging families to pursue early intervention options. The NDIA in response has tended to follow up these as individual cases without acknowledging the wider problems that exist for NDIS participants in the remote regions: i.e. transport and communication issues, general disadvantage, housing and food insecurity, plus the pressing issues of the lack of market for disability services in remote areas.

• Frustration has been observed over a long period of time from stakeholders as they understand that remote communities are not suited to market model interventions and that many other services (health, education etc) do not operate on this model. Stakeholders understand that the model is

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driven by the NDS and the NDIA is the statutory body to carry out the model, but NDIA staff do not seem to acknowledge the specific difficulties faced by NDIS participants in remote Australia. This has now been compounded by planners who are often not locally based and lack the contextual understanding that local planners would bring to planning processes.

• NDIS Privacy legislation often seems to actively work against efficient processing of various issues - as remote participants cannot easily navigate complex systems health staff have often chosen to act as facilitators to assist participants, however much time has often been wasted on the phone to NDIA, with the latter refusing to acknowledge the legitimacy of the callers (even with the participant present) and therefore declining to assist.

• The NDIA does not hold service providers accountable for the services they are providing, specifically the support co-ordinators. Whilst the Agency aims for consumer choice and control, the nature of someone having a disability often impairs their ability to advocate for their own rights.

• The complaints process could be improved. After one complaint was submitted regarding the poor practice of a service provider, the clinician making the complaint received an immediate call and request for details from the NDIA. Then, despite following up several times they have had no feedback on the outcome of this complaint.

c) Any other relevant matters.

• NT Health staff felt that the NDIA has certainly developed over time and is likely a more mature organisation as a result. The concept and principles of the NDIA are generally considered as excellent. However, there are still many improvements to be made for complex patients living in regional areas where there is market failure for many services.

• Increased governance is required to ensure services are ethical and meeting local need. There is too much room for providers to earn money from delivering poor quality care that is not fit for purpose.

• The observations was made that the perspectives of local NT stakeholders such as Non government Organisations, NT Health staff and others on the NDIS model at its inception (the NT Barkly Trial) were largely discounted. There seemed to be little acknowledgement from NDIA staff of the complexities of the local Territory environment and how that might interface with a market based model designed for different populations. Instead, the NDIA has developed along its own trajectory, resulting in delays in adapting its processes to suit different populations and a tendency to build new areas within the NDIA to address the challenges.

• Previous NDIA work completed to investigate participant/market issues - such as investigating plan draw down and directly approaching Coordinators of Supports regarding plan activity (Thin Markets Project) does not appear to be embedded within current NDIA processes. For example a remote participant has had a plan for several months with nil draw down. NT Health staff have been alerted to the case via another referrer and feel compelled to intervene for the benefit of the participant.

Acronymns

The following acronyms are used in this submission.

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