NDIA Accountability Project

NDIS Participant Experience in Rural Regional and Remote Australia

‹ PrevPage 1 of 13 · Source p. 1Next ›

For the

wellbeing

of Tasmanians

Submission to the Australian Parliament’s Joint Standing Committee on the National Disability Insurance Scheme

February 2024

HR Plus NDIS Participant Experience in Rural Regional and Remote Australia 1

Contents

HR Plus NDIS Participant Experience in Rural Regional and Remote Australia 2

About HR Plus Tasmania

Operating for over two decades, HR Plus is an independent, non-government organisation committed to ensuring that rural and remote communities in Tasmania have ready access to qualified and experienced health professionals. Funded primarily by the Commonwealth Government as the Rural Workforce Agency for Tasmania, HR Plus strives to improve the health status of all Tasmanians by supporting access to quality and sustainable primary care workforce.

HR Plus addresses workforce under-supply and maldistribution by:

  • Recruiting and retaining general practitioners, nurses, and allied health professionals,
  • Providing scholarships and in-service professional development opportunities,
  • Mentoring practice managers,
  • Engaging health care students and communities as the workforce of the future.

HR Plus is also a registered NDIS Provider of Support Coordination and Plan Management services in Tasmania, currently supporting 1,047 (191 support coordination and 856 plan management) participants across the State.

Website

www.hrplustas.com.au https://ds.hrplustas.com.au/

Report Authors

Dan Lowe – Primary Health Workforce Team Manager (HR+ Tasmania) Zoe Green – General Manager (HR+ Tasmania) Carolyn Budai – Team Leader Support Coordination (HR+ Tasmania) Kimbilli Johnson – HEAART Program Officer (HR+ Tasmania) Matthew Girkin – Team Leader Plan Management (HR+ Tasmania)

Executive Summary

HR Plus is pleased to present this submission to the Australian Parliament Joint Standing Committee. We believe our experience with delivering services in rural/remote communities, in addition to the knowledge we have attained as a registered NDS provider, ideally places us to provide insight into the experience of applicants and participants at all stages of the NDIA; the availability, responsiveness, consistency, and effectiveness of the NDIA in serving participants in rural, regional and remotes locations; and participants’ choice and control over NDIS services and supports.

In 2021 HR Plus self-funded a unique pilot program in George Town (Tas) - Health, Employment, Ability, Ageing, Rural, Training (HEAART). The intention of HEAART was to increase local training options and workforce capacity in the health, disability and aged care sectors, thus improving access to health and community services - sustained by people living in the rural town. Our submission is largely reflective of our experience with delivering the HEAART program, in addition to our understanding of the challenges NDIS Participants face in rural areas - HR Plus currently supports over 250 Participants in MMM 5 & 6 areas.

This report details how HEAART identified a significant number of vulnerable people that were eligible for the NDIS but were unaware of how to connect to the scheme. The access barriers that these residents face (in a rural town only 50kms from Launceston) are common across rural/remote areas. The lack of health professionals in rural settings, such as GPs and allied health clinicians, places significant delay and pressure on people with disability (PwD) applying to the NDIA – as does the financial burden of attending appointments with health professionals.

We discovered that many residents who had the financial means and health literacy to commence the NDS application process, simply gave up due to the lack of local support with navigating the application requirements.

The submission highlights how changes to the NDI Workload Manager System impacts individuals in rural/remote communities and how NDIS planners lack understanding of rural/remote issues – particularly the geographic isolation with limited infrastructure and the lack of public transport options. The trend with NDIS planners unwilling to factor in travel time and non-labour travel costs severely impacts PwD in rural areas and is a disincentive for allied health professionals to provide services in these locations - leading to the continuation of thin markets and plan underutilisation.

**Reliance on technology with accessing the NDIS and telehealth services has a disproportionate

effect on people living in rural communities as literacy rates are frequently lower, and people in

these areas can face barriers with limited access to the internet, or poor IT infrastructure.

Contained within this submission are three deidentified Participant case studies from clients that

HR Plus has supported as part of HEAART. These studies paint a picture of the multi-pronged

challenges that PwD can contend with in rural settings, and we would argue that without a

program like HEAART, these people would not be receiving the services they are eligible for.

We also explore the impact of thin markets in these locations, including the lack of health

professionals or suitable consult spaces/telehealth options in rural locations for visiting

clinicians, and the undersupply of locally trained disability support workers.

Our position, and why HEAART features prominently throughout our submission, is that service

gaps in communities are best addressed from within the community. Whilst it was never our

intent to generate a profit from HEAART, through our investment in the premise and strong

community engagement ‘on the ground’, we’ve not only been able to connect vulnerable people

to services that support their needs, we also estimate that the program will be self-sustaining

over the next 1-2 years – allowing us to roll out similar programs across rural Tasmania. HR Plus

recommends that the Government considers investing in models like HEAART to address service

gaps and thin markets in rural/remote Australia.

Our Experience with Improving NDS Access and

Performance in Rural Settings – The HEAART Program

The HEAART Program is a unique approach to workforce maldistribution and undersupply in

regional Tasmania across primary care, allied health, disability support, and aged care. The

aspiration of HEAART is to facilitate the growth of the workforce in rural locations through local

solutions to local issues, so that residents can live, train and work locally – contributing to the

growth of the community. Our objective is to work with the community to identify the demand in the disability, health and aged care sectors and upskill local people (in collaboration with community stakeholders) for employment in these fields.

The George Town LGA was selected after detailed research was conducted in 2020, including a thorough review of NDIS data1 which indicated that only 116 residents were receiving NDIs services, however the LGA held a population of 70002. Based on the average percentage of people living with disability in the broader community (21%)3, our analysis indicated that there could be over 1400 people requiring NDIS services in the region. In addition, NDIS dashboard data reflected significant NDIS plan underspend in the area. After auditing and establishing a baseline of primary care, disability and aged care providers servicing the area (including visiting services), HR Plus invested in securing a permanent site to deliver the HEAART program.

The establishment of a permanent full-time site in the rural town has been pivotal to the program’s success and connecting people with disability to the NDSI. Locations such as George Town are all too familiar with visiting providers delivering ‘outreach’ services – the investment of a permanent presence was warmly received by the community and key stakeholders bought into the concept from the outset. With community stakeholders engaged, we quickly identified 20 eligible individuals for the NDI at the commencement of the program and we collaborated with local GPs to successfully support these individuals through the NDIS application process. This early success demonstrated the value of an integrated approach to individual support and what can be achieved by investing in local communities. Within 2 years of HEAART commencing, approved NDIS plans in the LGA have more than doubled. It’s our strong belief that the people who we have supported with NDIS connection through HEAART should have been connected to

HR Plus NDSI Participant Experience in Rural Regional and Remote Australia

The NDIS when the scheme rolled out - but ineffective systems and processes have disadvantaged vulnerable people in rural/remote communities. This would not be an isolated scenario - George Town is rural town within 50kms of a regional city (but impacted by poor public transport), how many other vulnerable people living in rural towns and remote communities require more direct support with accessing the NDIS?

Throughout our engagement with prospective NDIS participants, we examined the issues as to why these people have not connected to the NDIS. Key issues included:

  • Obtaining the required evidence for the NDIS application is overwhelming and can pose significant challenges in rural/remote locations with a lack of health professionals

  • A number of people with disability described simply ‘giving up’ through the NDIS application process, due to the lack of local support with navigating the requirements

  • Others stated that, even if they did successfully commence on the NDIS, there would not be the supports that they required due to a lack of providers in the area (thin market)

  • There were common themes around confusion about the NDIS. Some people thought they would be ineligible for the NDIS if they received Centrelink payments. Others had simply never heard of the NDIS or held a misconception that being on the NDIS would cost them money

  • Most cited financial and access barriers - unable to afford the cost of a GP or allied health consultation to complete the required application paperwork - one person described being unable to afford the $150 archive search fee, to obtain her medical records (for NDIS evidence). Others noted that even with financial means, it was impossible to find an available clinician to assist with the application (thin market)

HEAART’s permanent presence in George Town has been strategically planned to contribute to the ethos of HEAART - building community capability and bolstering thin markets. The HEAART office accommodates visiting multidisciplinary health teams and service providers - with psychology, speech pathology and podiatry services leasing space on a part time basis. A sonographer leases consulting space three days per week and a denture clinic is leasing space one day per week - new services to the Town. HR Plus invested further in HEAART by commissioning a full time Ultra-Navigator role based in George Town. The Ultra Navigator works one on one with prospective NDIS and My Aged Care (MAC) clients, providing tailored support with accessing these programs and collaborating with community stakeholders to improve service delivery. In under 12 months, the Ultra-Navigator has assisted more than 90 local residents with accessing NDIS or MAC.

Participant Experience with Accessing the NDIS and Supports in Rural and Remote Locations

Our broad experience working with Participants in remote, rural and regional locations

A shift in the NDIS internal processes to the Workload Manager System has had a significant impact for individuals in rural and remote areas. Remote based planners lack crucial insight into local context, including distances, barriers to service access, and the unique cultural characteristics of the communities involved in the participant’s life. Challenges such as limited infrastructure (e.g. public transport), geographic isolation (distance or road conditions), and minimal access to mainstream, community or NDIS funded supports profoundly impact the implementation of NDIS plans and the achievement of goals. A more localised approach with planners familiar either with local communities or with a knowledge of the complexities of rural and remote settings is essential for ensuring that NDIS participants in these areas receive effective support tailored to their context and needs.

NDIS planners to date have been unwilling to factor both travel time and non-labour travel costs for allied health professionals into a participant’s plan. This has significant implications for participants in rural and remote communities. In these areas, given the limited availability of these professionals, the omission of travel-related costs may result in inadequate support for participants. Failure to provide sufficient transport/travel funding for therapeutic interventions is a disincentive for professionals to provide services to these areas, reinforcing service shortages.

In addition, delays in receiving services or a reduction in the number of hours available for therapeutic intervention (as funding is cannibalised by the unfunded but claimable transport/travel costs) impacts the timeliness and effectiveness of interventions, further disadvantaging individuals living in these communities. Adequate consideration to the impact of travel related costs at the planning stage, particularly where telehealth is either unavailable or not suitable, is crucial to ensuring equitable access to allied health services regardless of location.

The reliance on technological platforms for access to NDIS information (e.g. the Participant Portal) creates a barrier to those with limited access to internet and IT infrastructure, and those lacking the knowledge to use these resources. In addition, while Easy Read documents are available on the NDIS website, NDIS plans remain unnecessarily complex, using language that is often illogical and difficult to understand - e.g. “Capacity Building: Choice and Control” budget

HR Plus NDIS Participant Experience in Rural Regional and Remote Australia

Page 9 of 13

“Improved Daily Living budget (CB Daily Activity)” contains funding used primarily for therapy assessments and interventions. These complexities in the delivery of crucial information exacerbate the challenges faced by residents in rural and remote areas, where literacy rates are frequently lower than in urban settings, and access to assistance is limited. The emphasis on technology, and the complex language of NDIS plans not only creates a barrier for those with disabilities, but also disproportionately affects those in regional and remote areas where educational resources and support services are scarce. As a result, NDIS plans remain under- or unutilised due to lack of insight into how the funds can be applied, and a sense of utter overwhelm at the responsibility attached to appropriately managing a plan, understanding how to budget over a lengthy period or engaging with appropriate services.

Real experiences from Participants in the HEAART Program

Case Study 1:

A 46-year-old male living in George Town with Myotonic Dystrophy was referred to the HEAART program from the George Town Hospital social worker to assist with access to the NDIS. The participant was living with his aging father, and both were illiterate. The participant did not meet access requirement for the NDIS with the first attempt, due to not having a recent functional capacity assessment. The participant’s condition was degenerative and life limiting and the HEAART team felt that the decision for access should be changed. The HEAART team escalated the request through to the local disability minister for further investigation. The minister for disability disputed the access decision and requested the NDIA access team to contact from HEAART to clarify the participant’s situation. As a result of this review, it was determined that the applicant was eligible due to his disability meeting the access criteria and further evidence was not required. If this participant was not referred to HEAART they would not have been able to achieve this on their own due to literacy issues and the lack of local supports. During the application process the participant was also met with barriers from within the local community. His local GP did not have the capacity or time to complete a detailed Health Care Professionals report. The town library literacy coordinator also had limited capacity to assist with this application due to lack of knowledge and understanding of the access criteria.

Case Study 2

The George Town Primary school referred a family to HEAART for assistance with NDIS access.

Autism

HEAART explained the types of support that the NDIS will fund and the eligibility requirements. The family confirmed they were seeking assistance to complete an Access Request Form (ARF) for their youngest son as he was experiencing functional impacts across a range of domains. HEAART assisted the mother to obtain evidence from the school regarding their son’s functional impacts along with a psychology report that was completed during the diagnostic process.

HEAART informed the child’s GP that a Health Care Professional report was required to support the ARF. The GP was able to assist with this request; however, the GP focused his recommendations on the supports required within the education setting rather than the functional impacts experienced by the boy across diverse environments. Despite the GP’s recommendations, the application had a high level of supporting evidence and was lodged in November 2022.

During the following months no confirmation of receipt of the ARF was provided and HEAART followed up with the local NDIS partner to request a progress update. The Local Area Coordinator (LAC) confirmed that the delay was due to working in the new PACE system as part of the Tasmania Trial. The LAC also reported that the Access Team kept requesting more evidence and information on the ARF, as PACE processes changed during the trial. The LAC also confirmed that given it took some time for the Access Case to be reviewed by a delegate, the requirements had changed prior to the review and the LAC had not been appropriately notified by the NDIA when further action was required.

The LAC confirmed that they had completed the ARF in January. In June the NDIA then requested further information to be completed. The ARF was stalled in the NDIA Access queue until later in the year when it was again sent to the LAC to complete the DVS Identity which was another new process. The LAC was able to submit this in October 2023.

Access was granted in late October 2023, 11 months after the initial ARF had been lodged. The nominee was informed that the NDIS would contact her to arrange a planning meeting in the following 21 days; however three months later there has still been no contact made to schedule in the planning meeting.

HEAART have again supported the family to request an update and it has now been confirmed that a planning meeting will be scheduled. The nominee has received confirmation that the planning meeting will take place in February 2024, 14 months after the ARF was initially submitted.

Case Study 3

A 39-year-old male living in a rural Tasmanian community had the transport funding in his plan cut from above level 3 (based on previously assessed and accepted exceptional needs) of approximately $7K per year, to level 1 (approximately $1.8K per year) with no consultation with family or support team.

When challenged, we were advised that this decision was based on the fact that he owns his own car and thus running expenses are an everyday cost of living. The planner commented that this participant ‘drives his own car’ (an incorrect assessment of owning the vehicle to be utilised by other support drivers) indicating a significant lack of insight into the Participant and his disability needs.

This participant has particularly complex needs, with significant behaviours of concern relating to a diagnosis of Autism level 3. His behaviours can escalate into violence quickly, with physical injury to staff and family is a real possibility daily. He owns his own vehicle because it must be modified with a safety screen between him and the vehicle driver, as well as fitted with a restraint harness to keep him in the vehicle while in transit.

With planners not meeting participants and their families, and without local context, the planner has clearly been unaware of the very significant disability related transport costs – living rurally, he needs to travel up to an hour each way to access his therapy supports as well as to access the community. Telehealth is used to reduce costs, however this is far from ideal with his limited capacity to remain engaged without the physical presence of a therapist. Without this access and without the therapeutic interventions needed, his behaviours rapidly escalate, resulting in the need for 2:1 support for safety.

Community Capacity Building in Thin Markets

The original expectation for HEAART was to grow workforce opportunities first to respond to growth in the care sector, but the greatest barrier to sustainable jobs was identified as the thin markets or demand for services. We engaged with the local community to identify why an undersubscription to the NDIS existed and why approved NDIS plans in the region were reflecting significant underspend. This consultation allowed HEAART to determine the barriers for both the participants and the healthcare professionals which result in undersubscription of the NDIS and plan underutilisation in rural regions. The identified barriers included:

  • Misconceptions regarding what supports the NDIS will fund
  • Misconceptions about eligibility for the NDIS
  • Burden of proof of disability and gathering evidence
  • Health care professionals capacity and willingness to support the application
  • Limited understanding of how to appeal an access decision

Often in rural regions the local medical practice and schools are the key sources of advice for those wanting to apply for the NDIS. The advice they receive from General Practitioners and Early Childhood Educators can greatly impact on the individual’s NDIS journey. Often a lack of knowledge from the health professional, or a bias regarding their interpretation of what should be funded, results in an application not progressing further or not having appropriate supporting documentation resulting in a negative outcome. In response to these learnings HEAART has engaged with rural medical practices and schools to assist health care professionals and educators to understand:

  • Eligibility for the NDIS
  • What supports are appropriate to recommend and what supports are better referred to other mainstream services
  • NDIS terminology and how to provide adequate supporting evidence
  • How to navigate the appeals process and provide additional supporting evidence

Case Study 4:

While engaging with a rural medical practice to build capacity to complete ARF Health Care Professionals Reports, HEAART was informed by the GPs that they required training to understand the various allied health disciplines and referral process. This was due to the region being deprived of these services over an extended time, resulting in the GPs losing their knowledge of these professions.

HEAART Engagement With NDIS Participants

HEAART has also engaged with NDIS participants who live in rural and remote regions to understand the barriers they face with engaging supports under an approved plan. Unmet demand is reflected in the unspent funding sitting with many rural (and urban) NDIS participants in Tasmania.

For example, as of December 31, 2021, the 166 NDIS Participants living in George Town had an average combined funding pool of $4.39m, of which $1.5m (35%) remained unspent

  1. Recent data from the NDIS also confirms that on average 35% of NDIS funded plans in George Town continues to be unspent, compared to the TAS average of 26%.

HEAART often receives feedback from providers expressing that they have refused referrals for participants with approved plans in rural regions. This is because they have experienced challenges with staff recruitment, leading to an inability to guarantee that they can deliver support to participants. HEAART believes that increasing the supply of locally trained domestic care workers, support workers and allied health assistants may be one practical strategy to complement the disability services workforce and improve service access, particularly in rural communities.

Additionally, HEAART consulted with a range of Allied Health Professionals to better understand the barriers to delivery of these services in rural and remote regions. The lack of fit-for-purpose consulting spaces, funding for travel and unreliable access to telehealth equipment were leading reasons for the lack of allied health coverage in these areas.

Programs that are designed to improve access to services and address thin markets in rural locations (such as HEAART) require ‘buy-in’ from multiple stakeholders to maximise the potential for collective impact and build community capacity. To this end, HEAART has engaged with a range of community stakeholders including residents seeking NDIS services, providers delivering services and those looking for career and training opportunities in the disability and broader sector. Local collaboration with councils, medical practices/regional hospitals, Workforce Australia, schools, RTO’s, nursing homes, neighborhood houses, healthcare professionals, service providers and local community groups is crucial to identifying local solutions to local problems and creating sustainable services to respond to the needs of rural communities.