NDIA Accountability Project

Access barriers to NDIS services for children with disabilities in rural NSW

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Royal Far West Submission to the Inquiry into

Current Scheme Implementation and Performance of

the NDIS

February 2022

The Hon. Kevin Andrews MP Chair Joint Standing Committee on the National Disability Insurance Scheme PO Box 6100 Parliament House Canberra ACT 2600

Delivered by email to ndis.sen@aph.gov.au

Dear Chair Andrews,

Royal Far West (RFW) welcomes this Joint Standing Committee Inquiry into the current Scheme implementation and performance of the NDIS.

RFW is a national charity dedicated to improving the health and wellbeing of children living in rural and remote areas. We specialise in supporting children’s developmental, mental and behavioural health so they can reach their full potential. We work to address service gaps and support some of Australia’s most vulnerable families and communities, through the use of technology and in-person service models. As part of this work, we deliver a range of programs that are either funded by the NDIS or address the needs of children not currently in the NDIS, but who will ultimately be eligible for support through the Scheme.

The Windmill Program is RFW’s NDIS- registered disability service. It provides therapy (OT, speech, social work, psychologists) for children with a disability who live in rural and remote communities and have a NDIS plan. It is designed for children aged 2-12 years. The service uses a combination of Telecare (into homes and schools), in-person and community outreach to ensure rural and remote families, primarily in NSW, can access the supports they need, regardless of their geographical location.

During the past year, there has been a 70% increase in the number of families accessing the RFW Windmill service via Telecare. In 2020 - 2021, RFW provided 4,923 client sessions, with nearly one in five children identifying as Aboriginal and/or Torres Strait Islander.

RFW also has a telehealth supported Paediatric Developmental Program (PDP) that offers comprehensive multidisciplinary assessment, diagnosis, review and treatment for children with complex developmental and behavioural issues in rural and remote NSW. In 2020, RFW ran a pilot outreach project in Broken Hill, NSW that included a mix of online assessment via video and a visit by RFW clinicians. The aim of the project was to address gaps in access to comprehensive Multi-Disciplinary Team assessments and avoid the need for families to come to Sydney for assessment. Feedback from parents was overwhelmingly positive, especially given the pressing economic demands on families. As one parent described it:

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“I think if [child’s name] needed more appointments, for us to travel to Sydney is really difficult, because I’ve got ] 4 children, and they’re all under 6 [years of age], … And my husband has two jobs – so it does make it difficult to be able to go anywhere. So appointments on zoom is quite easier for me to do. …I would have had to pay for 4 children, two adults to drive, we’d have to drive because we couldn’t fly, all the way to Sydney…there is a large cost of that for us, because we live so far away…and school and all of that stuff as well.”[parent/carer NSW]1

RFW also offers the Healthy Kids Bus Stop (HKBS) in NSW, which is an outreach program, providing free comprehensive health screening aimed at children 3-5 years of age in rural and remote areas to support early intervention and school readiness. This program is run in partnership with local communities, including LHDs, preschools and local providers in communities who contact RFW to support a gap in screening and assessment access.

Many of these families and their children using the PDP and HKBS programs, will ultimately access the NDIS through both the Early Childhood Pathway and full scheme eligibility requirements.

This submission is informed by our experience as NDIS providers, and working with children living with a disability in rural and remote areas of Australia.

1. Access to NDIS services

Barriers to availability of and access to community-based and ‘Tier 2’ NDIS supports are particularly challenging for children living in rural and remote Australia.

Early intervention: RFW believes there is a lack of access to consistent, comprehensive pre-school developmental screening for rural and remote children that integrates disability, health and education.It is important to note that best practice early intervention starts at birth or pre-birth, as reflected in NSW Health’s First 2000 Days Framework (2019)2. Evidence shows that the earlier the intervention, the better the outcomes for children. Evidence also shows that culturally safe and respectful services and service delivery approaches are key to supporting equitable access for Aboriginal and Torres Strait Islander people with disability and their families get the supports and services they need.3

In NSW, RFW provides the Healthy Kids Bus Stop (HKBS) outreach program, a free comprehensive health screening program aimed at children 3-5 years of age in rural and remote areas. Over the past twelve months, nearly 80% of children attending HKBS clinics have been referred for further assessment and follow- up. Unfortunately, even when a developmental issue is identified in early childhood, children with a disability living in rural and remote Australia, face multiple and concurrent barriers to accessing consistent, quality early childhood Intervention (ECI) services they need. This is as a direct consequence of their geographical location.

Children in Middle Years (7-12 years): The need for good multidisciplinary child assessment has grown dramatically with the roll-out of NDIS and subsequent eligibility criteria. This affects children who have

1 RFW interview with a parent/carer 2 NSW Health. 2019. The First 2000 Days Framework. https://www1.health.nsw.gov.au/pds/ActivePDSDocuments/PD2019_008.pdf 3 NDIS. 2017. Aboriginal and Torres Strait Islander Engagement Strategy.https://www.ndis.gov.au/media/203/download?attachment

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accessed the Scheme through the early childhood pathway as well as new (older) children entering the Scheme for the first time.

Without ready access to paediatricians and skilled allied health practitioners, such multidisciplinary assessments are less likely to occur. This means accessing the Scheme after the age of 7 years, is harder in rural and remote areas. Once a child is able to secure a diagnosis to access the NDIS, children can still face barriers to access allied health professionals , including clinicians with the specific paediatric skills for their specific needs. This was reported in a recent RFW commissioned report from the Murdoch Children’s Research Institute on the health and development of children in rural and remote Australia4.

Prevalence studies of diagnoses of autism in Australia, show a high number of parent and teacher reported new autism diagnosis in the 8-9 and 10-11 years age group.5 While this may be attributable to a number of factors, it shows that children are often first diagnosed after they are too old for early intervention services. This effect is likely to be exacerbated for children in rural and remote areas due to the access issues described.

The NDIA Early Childhood Early Intervention (ecei) Implementation Reset Project Consultation Report (Nov 2020)6 proposed an increase in the age limit for children supported under the Early Childhood Approach from ‘under 7’ to ‘under 9’ years of age, to “help children and families receive family centred support throughout the transition to primary school.”

Based on evidence highlighting the importance of early intervention for long-term life trajectories for children with disabilities, and ongoing barriers to assessment and supports, especially in rural and remote areas, Royal Far West recommends extending the Early Childhood Approach age further to ‘under 12’ years of age, covering the entirety of primary school. This change will ensure all children have equitable access to the Early Childhood Approach, including rural and remote children and other disadvantaged populations, and will no doubt reduce later costs to the Scheme through extension of early intervention access.

Recommendations

  1. Provide consistent, comprehensive pre-school developmental screening and school-readiness programs for children aged 3-5 years, in rural and remote communities, that provide a seamless integration between disability, health and education supports.
  2. Extend NDIS Early Intervention access ages from under 7 to under 12 years to ensure all children who need early developmental supports, including Tier 1 and community supports, are able to access them more easily through the early childhood model, resulting in improved life-long trajectories and outcomes.

4 Arefadib, N. and Moore, T.G. (2017). Reporting the Health and Development of Children in Rural and Remote Australia. The Centre for Community Child Health at the Royal Children’s Hospital and the Murdoch Children’s Research Institute, Parkville, Victoria. 5 May T, Sciberras E, Brignell A, et al. Autism spectrum disorder: updated prevalence and comparison of two birth cohorts in a nationally representative Australian sample. BMJ Open 2017;7:e015549. doi:10.1136/ bmjopen-2016-01554 6 National Disability Insurance Agency (NDIA). 2020. Early Childhood Early Intervention (ecei) Implementation Reset Project Consultation Report (Nov 2020) https://www.ndis.gov.au/media/2840/download?attachment

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2. Psychosocial Disability in rural and remote children

While RFW acknowledges the important work being done by NDIS to support increased access to the Scheme for people with a psychosocial disability, we believe there are continued barriers to supports for children with a psychosocial disability arising from mental illness, particularly in rural and remote areas.

“We currently have a mental health system that focuses on specialist intervention rather than prevention and early intervention, and on adults and adolescents rather than children. In fact, for children under 12 years of age, there is no real ‘system’ of affordable, integrated care, delivered on the basis of need.” The National Children’s Mental Health and Wellbeing Strategy (2021) pg 15.

Mental health services for children aged 0-12 years are difficult to source in rural and remote areas across all jurisdictions. A RFW commissioned report from the Murdoch Children’s Research Institute7 found in sample communities that the few services that existed were predominantly located inside hospitals in major townships and required long distance travel. The lack of child mental health services is a considerable barrier to gathering the evidence for NDIS access via the psychosocial disability pathway, and also the provision of adequate mental health care if a child is deemed eligible through that pathway.

Data from the Australian Institute of Health and Welfare, reported by the National Rural Health Alliance, demonstrates the extent of the problem. The distribution of psychiatrists is skewed heavily towards Major Cities. There are 2.2 times as many psychiatrists (per 100,000 population) employed in Major Cities as there are in Remote areas and 5.3 times more than in Very Remote areas. The prevalence of psychologists decreases progressively with remoteness, as does the prevalence of mental health nurses. There are 4.1 times as many psychologists (per 100,000 population) and 2.6 times more mental health nurses employed in Major Cities than in Very Remote areas.8

Children in rural and remote areas with early indicators of emerging psychosocial disability resulting from mental illness, especially highly vulnerable groups, such as children in Out of Home Care or who have experienced early life trauma, are missing out on vital early intervention supports as service gaps rise and solutions are poorly coordinated and funded with the NDIS across the system.9 This includes lack of access to consistent and quality psychology and other allied health services under the current Scheme for childhood psychosocial disability.

These service and support gaps have serious implications for whole of life trajectory for these children. For example, one study found that 50% of children with mental illness continue to struggle in adulthood while the other 50% no longer warranted a diagnosis, their chance of functioning well was still less than that of people without a history of mental illness during childhood.10 This has significant implications for the sustainability of the Scheme as these later life costs are far greater than early intervention. For example, if a child with complex mental health issues receives intensive early multidisciplinary intervention with the right supports (access under NDIS Section 25 early intervention) eg. Psychology and Occupational Therapy, this

7 Ibid 8 National Rural Health Alliance. 2021. Mental Health in Rural and RemoteAustralia – Fact Sheet https://www.ruralhealth.org.au/sites/default/files/publications/nrha-mental-health-factsheet-july2021.pdf 9 The Australian Government. 2021. The National Children’s Mental Health and Wellbeing Strategy. Canberra. Pg 16 10 Costello EJ, Maughan B. Annual research review: optimal outcomes of child and adolescent mental illness. J Child Psychol Psychiatry. 2015;56(3):324-41.

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could reduce the severity of any long-term disability resulting from their mental illness, including avoiding the need to become a full NDIS Scheme member in later life.

A broader approach to children’s mental health by the Scheme is required, including increased workforce training in childhood mental health and psychosocial disabilities, a better integration of disability and health approaches to child mental health, and expanded access to psychology and developmental supports for children with early signs of psychosocial disability, with a focus on a recovery orientated approach.

Recommendation 3. Expand access under Section 25 (access to early intervention) of the Scheme to psychology and developmental supports for children with early/emerging complex mental health issues that could lead to long term psychosocial disability; including increased workforce training to recognise and support early psychosocial disability in children.

3. The interfaces of NDIS service provision with other non-NDIS services provided by the States, Territories and the Commonwealth, particularly aged care, health, education and justice services;

There is growing evidence about the value of telehealth delivery into schools and early learning centres as an ideal setting to increase access and support for children’s needs. With limited access to reliable connectivity and the necessary technology in rural and remote areas, schools can play an important role in supporting service access for children from rural and remote areas.6 In RFW’s experience, many schools (public, catholic and independent) in regional, rural and remote areas of NSW play a vital role in supporting their students and families to access NDIS, when they would otherwise face significant barriers. This includes:

  • Supporting access to screening and assessment, helping some families navigate the scheme and paperwork, especially more disadvantaged families with lower health literacy etc.
  • Playing a connector role between parents/carers and local NDIS registered services once children are accepted into the Scheme.
  • Providing access to a private space at the school for in-person NDIS service delivery.
  • Supporting access to internet connection and technology to access telehealth services. This sometimes includes providing technology set-up and sessions scheduling support, and in all cases a ‘therapy-aide’ from school staff to facilitate telehealth session delivery, with or without a parent/carer present (especially to support disadvantaged families if parents/carers faced significant barriers to attend sessions).

Schools have diverse views and understanding about where school responsibilities and NDIS responsibilities to support children with disabilities begin and end, and how NDIS should be supported by and within the school system. These difference in views result in differing levels of support provided for children in rural and remote areas.

Recommendation 4. NDIA should engage with Departments of Education to develop a rural and remote schools policy and associated engagement framework to facilitate the pivotal role these schools can and often do play supporting NDIS access for rural and remote families. This will ensure these benefits are equally accessible, and that rural and remote schools are well supported by the system to play this role.

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4. The drivers of inequity between NDIS participants living in different parts of Australia - Improving choice, quality and control of service provider options for regional, rural and remote children

RFW has identified two additional areas to improve choice, quality and control of service provider options for parents/carers living in rural and remote areas, who are seeking services for their child’s needs through NDIS.

These are:

i. Additional funding for travel for rural areas (MMM4-5)

“Even with the NDIS, the costs are covered through your package. You can have it covered. That’s fine, but it costs me to travel an hour and a half to the nearest major city. Yet, that’s not covered…10 kilometres is covered within the costing of the NDIS. 10 kilometres…10ks doesn’t even get me to town…Gets me to my neighbour’s farm…My car, I’ve had it for six months. Between all my appointments, my travels to Sydney and everything it has done, in six months has done 25 to 30,000 kilometres in six months because of appointments traveling to Sydney up in twice to Sydney in six months. That’s a second-hand car…It’s done 25,000 kilometres in six months.” [Parent/carer, MMM5]11

Regional, rural and remote parents and carers face inequitable barriers to service access, including lack of available services and higher transaction costs to get to the services for their children’s developmental disabilities effecting families access to the foundational pillars of the NDIS - choice and control. Transaction costs include the cost of transport, accommodation, additional time off work for parents and carers, child time out of school, stress etc.12 RFW acknowledges important reforms to increase pricing limits and participant packages, based on Modified Monash Model classification for remote and very remote areas to improve access for these populations, including the reclassification of some outer regional areas as ‘NDIS isolated towns’ for communities surrounded by remote or very remote areas. We also acknowledge the great work being done in Thin Market Trials to support increased service access in these areas.

However, inner and outer regional (MMM4-MMM5) areas in particular, still often face significant barriers to accessing services, including inequitable transaction costs, which effect the levels of choice and control for many rural families trying to access NDIS funded services for their children. This exacerbates inequity between participants living in different parts of Australia.

Pricing based on Modified Monash Model areas does not take into account the issue of provider retention in non-remote areas, or the need for long travel to access paediatric specialist services for a child’s specific needs. This in turn reduces access as well as choice and control for many rural areas. Until thin market solutions are identified and in-place, families living in these rural areas will face continued inequities of access, choice and control.

11 RFW parent/carer interview 12 Abimbola, S., Keelan, S., Everett, M., Casburn, K., Mitchell, M., Burchfield, K., Martiniuk, A.(2019) The medium, the message and the measure: a theory-driven review on the value of telehealth as a patient-facing digital health innovation. Health Econ Rev 9: 21. https://doi.org/10.1186/s13561-019-0239-5

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Using the evidence provided in the Annual Pricing Review (202013) from The Department of Education, Employment and Workplace study into their loadings for regional service delivery in 2011, we recommend an increase in provider pricing limits and participant packages to include a 10% loading for outer regional areas (MMM5) and a 5% loading for Inner Regional areas (MMM4) to compensate for ongoing service access barriers and gaps, and resulting inequity of transaction costs and limits on family choice and control. This measure would be necessary until Thin Market Trials are complete and successful models are broadly established and embedded. Without this interim measure, families trying to access services will continue to face inequitable costs and burden compared to other Australians.

Recommendation:

  1. Pricing limits and participants’ funding should be expanded to include a 10% loading for people in outer regional (MMM5) and a 5% loading for people in inner regional (MMM4) areas, until Thin Market Trials are complete and embedded

ii. Supporting increased use of telehealth models

“Telecare has been very worth it. I never would have imagined how much support was available when we decided to move out west.” [Windmill Program parent/carer]14

Increased use of telehealth models can help to bridge the divide in ‘choice and control’ as well as quality for many rural and remote families accessing NDIS, especially for children requiring specialist paediatric services.

There is a growing body of evidence on the effectiveness, acceptance and efficiency of telehealth approaches that use videoconferencing to deliver health services, including for paediatric developmental disabilities (Speech Pathology and Occupational Therapy) and behavioural and emotional health problems in children, especially in rural and remote areas.15 16 17 This includes evidence for the effectiveness of the use of telehealth for the treatment of Autism18 and ADHD19 etc

Telecare (RFW’s telehealth service) is proven to be equally as effective in producing positive outcomes when compared to in-person therapy, and RFW has been involved in a number of Randomised Control Trials to test and establish this evidence.20 And early but growing evidence also indicates good effectiveness of clinical services delivered via telehealth for Aboriginal and Torres Strait Islander peoples, high levels of patient satisfaction and an increased ability to provide culturally appropriate services.21

13 National Disability Insurance Agency. (2020). Report of Annual Pricing Review 2020-21. www.ndis.gov.au 14 RFW parent/carer satisfaction survey 15 Campbell J, Theodoros D, Hartley N, Russell T, Gillespie N. Implementation factors are neglected in research investigating telehealth delivery of allied health services to rural children: A scoping review. J Telemed Telecare. 2020 Dec;26(10):590-606. doi: 10.1177/1357633X19856472. Epub 2019 Jun 19. PMID: 31216211. 16 Langkamp D, McManus M, Blakemore S. Telemedicine for Children with Developmental Disabilities: A More Effective Clinical Process Than Office- Based Care. Telemed J E Health. 2015;21(2):110-4. doi: doi:10.1089/tmj.2013.0379 17 Spaulding R, Belz N, DeLurgio S, Williams AR. Cost savings of telemedicine utilization for child psychiatry in a rural Kansas community. Telemed J E Health. 2010;16(8):867-71. doi: doi:10.1089/tmj.2010.0054. 18 Wacker DP, et al. Telehealth with Autism. J Dev Phys Disabil. 2013. 1;25(1):35-48. 19 Nelson EL, et al. Telemedicine and ADHD. Psychol Serv. 2012 Aug;9(3):293-7 20 Dadds M, Thai C, Diaz A, Broderick J, Moul C, Tully L, et al. Therapist-assisted online treatment for child conduct problems in rural and urban families: Two randomized controlled trials. Journal of Consulting and Clinical Psychology. 2019;87(8):706–19. doi: doi.org/10.1037/ccp0000419. 21 Fraser S, Mackean T, Grant J, Hunter K, Towers K, Ivers R. 2017. Use of telehealth for health care of Indigenous peoples with chronic conditions: a systematic review. Rural Remote Health. 2017 Jul- Sep;17(3):4205. doi: 10.22605/RRH4205. Epub 2017 Sep 20.

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Telehealth assists in countering workforce shortages, improves continuity of care, and is more cost-effective than “fly in/fly out” service models.

By supporting expanded access to telehealth models of care, NDIS can improve equity of access to specialist paediatric services, including for highly disadvantaged populations, and those people living very remote areas. It will also allow increased access where services are limited. To support the increased use of these telehealth models, RFW recommends:

  • Telehealth Set-up and Delivery Packages: Based on the findings of the ‘Regional Telecommunications Review’, to ensure adequate funding in individual NDIS plans to cover the high-cost of quality connectivity and technologies required to deliver telehealth in regional areas, RFW recommends the provision of a Telehealth Set-up and Delivery and Maintenance Package, similar to the current AAT package for assistive technologies. To ensure quality and sustainable access to telehealth services, especially for more disadvantaged populations, this package is recommended to include funding to cover:
    • High quality unlimited internet plan coverage
    • Purchase and maintenance costs of a quality computer, webcam microphone, head set and external speakers
    • Funding for a support worker to support facilitation of telehealth sessions
    • Support collaborations with education, health and communities to support accessible options for telehealth access in rural and remote communities if home options are not feasible, including allowing funding under the telehealth package for support workers to be used to fund eg. a school Teacher Aide or Learning and Support Coordinator, if schools are supporting telehealth into the school, including providing therapy aide support in sessions

Recommendations:

  1. Introduce a telehealth set-up and delivery package for NDIS participants living in rural and remote areas, who plan to access telehealth supported services.

  2. Increase active support for expansion of telehealth supported models of care within the NDIS system. This should include supporting collaborations with education, health and communities to facilitate accessible options for telehealth. This should also include options for families to access improved community infrastructure and technology to access telehealth eg. in community hubs and schools if suitable and preferred, and additional staff supports if required.

5. A new Rural and Remote Strategy

Given the on-going challenges for children in rural and remote Australia to access NDIS, Royal Far West also strongly recommends further consultation and development of a second NDIS Rural and Remote Strategy to replace the 2016-2019 Strategy. This will ensure that ongoing implementation challenges are well addressed, and inequities for rural and remote families have continuous focus, especially with the emerging and ongoing impacts of COVID and natural disasters on access.

Recommendation

  1. A new NDIS Rural and Remote Strategy should be produced following thorough stakeholder consultation.

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In summary, RFW acknowledges the excellent progress so far in helping support rural and remote communities to access the NDIS, but believes further reform would deliver greater improvement and equity for children living with disabilities in rural and remote areas.

Additionally, for a specific and comprehensive understanding of NDIS implementation issues in very remote Aboriginal communities in the Kimberley, WA, we refer the Inquiry to a recent NDIA commissioned joint report by Marninwarntikura Women’s Resource Centre (MWRC), the University of Sydney Westmead Clinic and Burbangana Group Rice et al. (2021) ‘People Don’t Know What Good Looks Like: Creating Equity for People With Disability in the Fitzroy Valley’, as well as their previous submissions to the Inquiry, which can be found on the MWRC website: https://mwrc.com.au/pages/research-and-reports

RFW is happy to provide more information about these comments if required.

Contact: Jenny Stevenson Head of Government Relations and Policy

Royal Far West

About Royal Far West

  • Royal Far West is one of Australia’s oldest and most respected charities and is the only national charity dedicated to the developmental health and wellbeing of Australia’s country kids.
  • Established in 1924, Royal Far West provides a truly integrated service and offers health, education and disability services for country children and their families at the Centre for Country Kids in Manly, as well as virtually via Telecare and in local communities.
  • Through a team of more than 80 paediatric specialists, Royal Far West supports children aged 2- 12 with a range of concerns including speech and language delays; behavioural and conduct disorders; early life trauma and mental illness; autism, attention deficit and hyperactivity disorders.
  • Royal Far West works in partnership with families from rural and remote areas and their local health and education providers to complement existing services within their communities.
  • http://www.royalfarwest.org.au/

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