Challenges accessing NDIS supports for children in rural and remote areas

Joint Standing Committee on the

National Disability Insurance Scheme

Inquiry into the NDIS participant experience in rural, regional and remote Australia

February 2024

About Royal Far West ………………………………………………………………………………………………………………………………… 2 Royal Far West and the NDIS ………………………………………………………………………………………………………………… 2 Comments regarding the experiences faced by applicants and participants: …………… 3 Case Studies – the excessive costs of reports to access the NDIS ………………………………………. 4 Recommendations …………………………………………………………………………………………………………………………………….. 7

About Royal Far West

Royal Far West (RFW) is an Australian children’s charity dedicated to improving the health and wellbeing of country children. In 2024, RFW will turn 100 years old and throughout our history our mission has remained unchanged. Our bold ambition is to ensure every country child has access to the services they need to support their early development and enrich their lives.

We offer multidisciplinary allied health screening, assessment, and therapy services for children up to 12 alongside capacity building services for their parents/carers, teachers, and local health professionals to address a range of complex developmental concerns, including disabilities. Our team of 170+ trauma informed, specialist consultants, paediatric trained allied health clinicians and service staff, support children in rural and remote areas in NSW, QLD, WA and Vic, largely in schools and preschools and from our child development unit in Manly NSW.

In FY23 we supported over 21,000 country children, parents and educators. Approximately 30% of the children and families we work with identify as Aboriginal and Torres Strait Islander. Our services are culturally responsive and community-focused, and we work in partnership with schools, the early years sector and communities to support children’s development, wellbeing, and resilience.

Following COVID, and in recognition of the importance of having staff located near the communities we service, RFW’s staff footprint has undergone a dramatic transformation, moving from a Sydney-based organisation to now having 40% of our clinical and service staff work remotely and located across NSW, QLD, WA, and VIC.

Our three service models are:

Child and Family service – a NSW based residential/telehealth tertiary level assessment and diagnosis service
Schools and Early Years service – telehealth led services supporting improved learning and life outcomes for children in rural and remote settings
Community Recovery service – in-community and telehealth services supporting recovery from disaster levels events

Our NDIS offering is embedded in both our Child and Family and Schools and Early Years Services. For example, a child may be referred to our Child and Family service (part funded by NSW Health) for assessment and diagnosis, and then receive therapy funded by the NDIS post assessment.

Royal Far West and the NDIS

Through a combination of Commonwealth, State, corporate and philanthropic funding, RFW plays a crucial role in supporting Australia’s most disadvantaged and isolated children and families, by integrating health and education across a growing number of rural and remote communities, collaborating with schools and early learning settings and in more recent times, those that are disproportionately impacted by natural disasters.

RFW’s interest is the NDIS is in the early years and intervention services. In FY23 we supported 169 clients and their families to receive therapy – both via telecare and also through in-person

immersion weeks in Manly. The number of participants is set to grow this year. Billings from NDIS appointments make up approximately 4% of the Royal Far West revenue base.

We are committed to delivering NDIS services to rural and remote families who cannot access them locally. However, it has been challenging to make the NDIS business model sustainable for RFW, due to its transactional nature.

Overall, we believe that the NDIS has been a positive reform that has improved the lives of people with disabilities. However, we also believe that improvements are needed in how the scheme operates for children and their families from rural and remote areas.

Comments regarding the experiences faced by applicants and participants:

Children from rural and remote Australia face substantially less positive outcomes from the NDIS due to a number of compounding factors. These factors are at play from the moment a child is identified as requiring additional support.

Scheme Access Families face delays from the outset in accessing Scheme due to lack of Paediatricians or Allied Health professionals who can diagnose or assess (outside of the Early Childhood pathway), as well as a lack of access to Early Childhood partners for those under the age of 6.
Choice When on Scheme there are substantially fewer providers available to rural families, which means families have less choice, and may feel pressured to utilise a provider that is not a great fit for their child. Where providers are available, they generally have long waitlists. There is also a great deal of confusion with state-run Community Health services, who are exiting children from therapy once they have NDIS plan approval. This may mean that families are left with no therapy while they wait for an NDIS provider. Essentially, these families may have been better off without plan approval if they had access to Community Health.
Providers NDIS providers in rural and remote areas may have to rely on inexperienced and junior staff, and often cannot provide a continuity of care due to a very high staff turnover. As a result, families may not be able to access any services that are operating under best practice guidelines. The lack of development of the Allied Health Assistant model is extending these issues.

Not-for-profit organisations are continuing to provide services, but are not adequately supported to operate in thin markets, where transactional funding is unsustainable. There continues to be a lack of support for community service that are struggling to exist and operate a sustainable business.

Ime:NDISDashboard–remotenessandparticipants

Plans Small plans do not take into consideration the distances that providers need to travel to reach remote families. Travel costs for rural families are often at least double that of metropolitan services, and there have been multiple examples of providers taking advantage of excessive distances and engaging in price gouging. It is not uncommon for families to pay up to $500 per session by the time travel and report writing is included. Due to the lack of choice and competition, families are forced to accept this and see plans eaten up by additional costs.

If plans are not able to be fully utlilised due to a lack of providers, then they may be reduced in subsequent years. In order to avoid this, some families exhaust their plans through getting reports to support an increase, only to then have the new plan denied.

Guidelines Rigid operational guidelines don’t take into account unique factors for regional families- eg longer waiting lists, longer travel distances, less choice – increase stress impacts on the parents’ mental health, and many families are absorbing the travel costs themselves if providers are unable to travel to them.
First Nations Participants The above issues are often exacerbated for remote First Nations participants, who face additional barriers to entry. RFW supports the Coordinated Funding Proposal approach that can be used when the supports not available locally, are too expensive or not good quality. However, this approach will only be successful if there is a local representative driving the proposal (eg a school or preschool worker) who has an excellent understanding of the NDIS.

Case Studies – the excessive costs of reports to access the NDIS

The following case studies about Sam and Anthony (not their real names) highlight issues that commonly arise for families from rural areas:

No access to any advocacy services to support them as there were none available in their area.
Higher rates for therapy because of travel and mileage.
Lack of choice of providers.
Excessive reports/assessments required to maintain funding impacts on direct therapy. 4

Sam* is a 9-year-old boy from South Coast who was diagnosed with level 1 Autism, Generalised Anxiety, ADHD, Speech Disorder. His function skills were extremely low and were reflected in previous reports from the therapists that he had been accessing privately until the family circumstances changed and they were unable to continue to afford to do so. The continuity of therapy was also interrupted as therapists left the area and were not replaced.

The family had not accessed therapy through the Early Childhood Pathway as they had been told that he was not eligible. Sam’s parents completed an Access Request to the NDIS in Feb 23, which was rejected as there was “no evidence of permanency of his condition”. The family appealed that decision supplying with Agency with the following:

Psychology report diagnosing Autism and Intellectual disability.
Speech Pathology report diagnosing moderate receptive and severe expressive language disorder.
Occupational Therapy report also diagnosing significant motor planning, and regulation issues.

Sam’s application was then approved, and following their planning meeting was funded for $7,200 specifically for Psychology, and Occupational Therapy; a much smaller proportion of the therapy hours that had been requested. Sam’s parents immediately requested a review of this decision as the funding was inadequate to meet the child’s needs, based upon the provider’s estimates of the frequency and recommendations.

Whilst they awaited the internal review decision the family, as advised by their Local Area Coordinator, and to support their request for additional funding, they were able to access a psychologist, who completed a functional capacity assessment for $2,200. The family were quoted $420 an hour for sessions with therapeutic recommendations of 24 hours. This was the only psychologist in the area. The family decided to prioritise his remaining funding and were able to engage a” local” Occupational Therapist who visited the school to deliver therapy sessions. This therapist also required an OT assessment to be completed before she would commence therapy (6 hours =$1163.94). This therapist’s hourly rate also had additional cost of 1 hour travel plus mileage effectively raising the cost of therapy to $450 per hour and reducing the number of sessions to 8, over the 12 months of the plan. Sam’s plan was exhausted within 2 months, and he has not accessed any therapy for 6 months.

The internal appeal was subsequently rejected so the family then took this to the AAT and are currently awaiting the results of that appeal.

Anthony* is a 12-year-old boy from regional NSW whose NDIS plan allows access to approximately $10,000 worth of therapy annually.

As part of his plan, Anthony is required to have a functional capacity assessment, reviewed bi-annually. In the alternate years he is required to be assessed using the Vineland adaptive behaviour scale. Each of these tests cost approximately $3000. However, Anthony’s parents report that last year, the total cost of written reports required by the NDIS, once travel time and report writing time was included, was $8,000 – leaving very little for therapy.

Anthony’s mother is very frustrated with the constant assessment as it makes Anthony extremely anxious each time and feels pointless. With such limited capacity to pay for therapy, Anthony believes her son would be in a better position if did not have an NDIS plan and could access his local Community Health service instead.

Recommendations

We believe that the following measures will help to ensure that the NDIS can continue to operate and provide high-quality services to families and children with disabilities.

Provide support to not-for-profit community-based organisations so that they are a viable choice for families in their community and provide funding for family support.
Introduce block funding to support rural communities to commission providers of choice to deliver services to community.
Support the development of disability specific Allied Health Assistant training and model. This is especially relevant for First Nations families and children.
Provide rural and remote families with separate travel budget (outside of therapy line item) to cover costs of therapist travel to deliver services in natural environments (best practice)
Limit the number of reports families are required to provide to support for review of plans.
Provide more rigorous oversight of price gouging and penalties for such.
Better intersection and clearer guidelines between access to state funded services and

NDIA

Remove ‘Big Stick ‘philosophy of penalisation when plans are underutilised and develop genuine understanding of the limitations of rural and remote communities.