Response to the Joint Standing Committee inquiry into the NDIS participant experience in rural, regional, and remote Australia

March 2024

Kiind I operated by Parents of Children with Special Needs Inc

Perth Children’s Hospital Ground Floor, Family Resource Centre

15 Hospital Ave, Ned lands WA 6009 C/- Child and Adolescent Health Service, Locked Bag 2070, Ned lands WA 6909

nl,-..,,......,,,.... tno, c::,c / . oonc::  c..--..-..,1  h,....11,...,..;:::;•d,; ..... ,-,4  ,..,.... .........  -..,  t \At ..... h  1/i: ..... ,-.1  ,....,.... .........  .... ,  1

We are Kiind. ……………………………………………………………………………………………………………………………………………………………………. 3

Introduction …………………………………………………………………………………………………………………………………………………………………….. 3

Response to the Terms of Reference …………………………………………………………………………………………………………………. 4

a. The experience of applicants and participants at all stages of the NDIS, including application, plan design and implementation, and plan reviews. ………………………………………………….. 4

Application ……………………………………………………………………………………………………………………………………………………………… 4

Plan design ……………………………………………………………………………………………………………………………………………………………… 5

Plan implementation ……………………………………………………………………………………………………………………………………….. 6

Plan review ………………………………………………………………………………………………………………………………………………………………7

b. The availability, responsiveness, consistency and effectiveness of the NDIA in serving rural, regional, and remote participants. ……………………………………………………………………………………………………… 8

c. Participants’ choice and control over NDIS services and supports, including availability, accessibility, cost and durability of those services. …………………………………………………………………………………. 8

d. The particular experience of Aboriginal and Torres Strait Islander participants, participants from Culturally and Linguistically Diverse backgrounds, and participants from low socioeconomic backgrounds………………………………………………………………………………………………………… 9

e. Any other related matters …………………………………………………………………………………………………………………………….. 10 Participants need to be seen as part of their family system. ………………………………………………………. 10

Removing unregistered providers will remove choice and control for families. ………………. 10

Recommendations ……………………………………………………………………………………………………………………………………………………. 10

Develop innovative models of service delivery in regional WA. ………………………………………………….. 10
Develop a ‘whole family approach’ in NDIS for all participants under 18 years …………………… 11 Conclusion ………………………………………………………………………………………………………………………………………………………………………. 12

Contact information ………………………………………………………………………………………………………………………………………………….. 12

References ………………………………………………………………………………………………………………………………………………………………………. 13

kiind.com.au                                                       P a g e 2 | 13

We are Kiind.

Kiind is Western Australia’s oldest and largest, not-for-profit member organisation supporting families raising children living with a disability, developmental delay, autism, genetic, rare, undiagnosed and/or chronic condition, from birth to age 25. We provide information and capacity building, peer support and navigation to help families and children reach their potential.

Kiind supports over 6,300 families in Western Australia (WA) with approximately 28% of our membership located outside of metropolitan Perth (MM2 and above in the Modified Monash Model).

For this submission, Kiind surveyed a small sample of our regional membership on parents and carers experiences of the NDIS in the Wheatbelt, South West, and Great Southern regions of WA. The results of our survey echo the findings of recent research on the lived experience of NDIS participants and their carers in rural areas (see Veli-Gold et al. 2022; Wakely et al. 2023; White et al. 2021). The following discussion shares the perspectives of families in our survey, and in the research literature.

Introduction

The NDIS has struggled to reduce the inequalities that can accompany living in regional areas, including transport costs and lack of service access, which subsequently increases pressure on parents and carers supporting children with disability or developmental delay (Prowse et al. 2022).

In Western Australia (WA), our geographical isolation is felt keenly in the regions, where the vast majority of regional areas are classified as Small Regional Towns (MM5), Remote (MM6) or Very Remote (MM7) in the Modified Monash Model. This remoteness leads to very thin markets, workforce instability, and a greater burden of care on families trying to access specialist services over vast distances (Wakely et al. 2023).

For example, NDIS Early Childhood Partners are available in metropolitan and limited regional areas. In WA, about 80% of the state does not currently have access to NDIS Early

Childhood Partners (Kimberly, Pilbara, Mid West, Goldfields and outer Wheatbelt). Families

raising children with developmental delay or disability in these regions are missing out on the crucial early supports that can improve developmental outcomes over the lifespan.

In addition to the detriment to children’s early developmental outcomes, the socioeconomic and geographical barriers that regional families experience can add significant emotional, financial, and practical burdens on parents or carers in NDIS planning and implementation, leading to greater risk of carer burnout (Veli-Gold et al. 2023, p. 645).

kiind.com.au                                                       P a g e 3 | 13

Response to the Terms of Reference

a. The experience of applicants and participants at all stages of the NDIS, including application, plan design and implementation, and plan reviews.

Application

QB What was your experience of the application process for the NDIS?

/ Easy

Neither easy nor difficult

Almost two-thirds of families told us they found the NDIS application process difficult or very difficult.

“Forms were complicated, specific jargon had to be used, very stressful and overwhelming. Then add the complication of getting all the reports and extra sessions for my children, which escalated their behaviour. I’m exhausted.”

The NDIS application process is confusing and arduous for many parents and carers (Kiind 2023). This is exacerbated in regional areas, where families may not have access to the specialists required for providing evidence of a child’s condition or functional capacity.

“I didn’t know how to do it at all, my son’s private OT helped.”

About 25% of families said the process was easy and told us this was because they had a professional assist with their NDIS application such as an educator or health provide. In these instances, families expressed that the process was still complicated, but not stressful.

“My daughter was with Disability Services [Commission] before it became NDIS. The application process was done mostly for us by our daughter’s doctor with minimal effort from us.”

This highlights the need for more local partnerships in regional areas with local community services that can support NDIS participants to apply for, design, plan and implement their NDIS support packages in person-centred and strengths-based ways.

kiind.com.au                                                       P a g e 4 | 13

Plan design

Q9 How satisfied are you with the details and goals in your NDIS plan?

✓ sarisned

Neither satisned nor dissatisne,

More than 60% of families told us they were dissatisfied or very dissatisfied with the details and goals in their NDIS plans. Several families reported that NDIA staff or NDIS planners lacked awareness of their child’s condition or understanding of the complexities of their needs. They also found that plans included goals or services that were simply not available in their region.

“It was difficult to get the information needed to adequately communicate the complex needs of my child.”

Many times, parents gathered evidence demonstrating their child’s needs, but it was not reflected in their plan.

“I’m not satisfied with our plan because only one issue was addressed, not the one that we had multiple specialists’ letters of support for.”

While such issues are experienced by families in metropolitan areas (Kiind 2023) they can be exacerbated in the regions by the limited choice of providers and the more transient workforces with less experience or supervision compared with larger services in metropolitan areas (Veli-Gold et al 2023, p. 645).

kiind.com.au                                                       P a g e 5 | 13

Plan implementation

QlO What has it been like to implement your NDIS plan?

Not applicable

Very euy

Ea,y

Neither euy nor difficult

Difficult

Very difficult

Nobody told us that implementation of their NDIS plan was easy. More than 60% of respondents said it was difficult or very difficult to implement their NDIS plan. The difficulty of plan implementation is impacted in the WA regions by thin markets, contributing to uncertainty of access and challenges to participant choice and control in regional settings (Wakely et al. 2023). In areas where services such as the Remote Community Connectors system are operated by Aboriginal Community Controlled Organisations (ACCOs) in the Kimberly, they can assist with service access, particularly in Aboriginal communities (White et al 2021). However, these are not universally available and the practice quality between services and different regions can vary. A more consistent, equitable approach to local partnerships in delivery of NDIS services is required.

“We chose not to go with local services due to the level of interruption of services”

Service interruptions are common, with parents reporting they are telling their child’s story all over again with every new worker that comes along.

“The services aren’t here. And when they come, and you start, they leave again. Especially speech and OT.”

The revolving door of service providers can be stressful and disheartening for children and their parents and carers. This leads to inconsistency and poor continuity of care.

“Lack of availability of private and agency support staff has contributed significantly to inconsistent care and access to programs for our daughter.”

A solution to the issue of therapy provider supply interruptions may be to invest in training of families and parents to delivery therapy interventions, under the guidance and supervision of specialist providers based in other places. This requires acknowledgment by the ‘experts’ that parents bring their own expertise in responding to their child’s needs.

kiind.com.au                                                       P a g e 6 | 13

“Sometimes it would help, but other times if the provider wasn’t experienced enough it would trigger her into a new meltdown.” – Parent

Where services are unavailable in their area, families are travelling vast distances and interrupting their lives to attend appointments in larger regional centres, or Perth. The time and costs spent travelling to access early childhood intervention and health appointments presents significant challenges for regional families.

Taking time away from school, work, and community to attend appointments causes disruptions in the whole family and creates significant financial and emotional strain.

“[We are] having to travel to metro due to lack of appropriate services locally… Travel is unsafe and stressful so we ended up going into further debt to buy a property in Perth so travel can be spaced out.”

These issues compound where children have multiple specialist appointments in the hospital system. These are not coordinated, and families are rarely consulted, but they are expected to ‘drop everything’ to attend the appointments they are given (Kiind 2023).

“Ridiculous travel costs eat most of our budget if the provider comes to our area. Telehealth is useless for physio and I can’t afford the transport cost to get my child to an appointment 1hr 30 away from us twice a week.” – Parent

Remote and Very Remote families in WA experience a shortfall in travel cost loading in the NDIS funding – the actual travel costs in these regions exceed the funds provided for travel in their plan. The NDIS should review the model used to calculate the travel cost loading in regional WA.

Plan review

Qll If you’ve had a Plan Review, please tell us how satisfied you were with that process:

Not applicable

Very ■at i1fied

Satisfied

Neither

satisfied no…

Otuatisfied

Vtty

di11ati1fied

kiind.com.au                                                       P a g e 7 | 13

100% of families who have had an NDIS Plan Review said they were dissatisfied or very dissatisfied with the plan review process

“Every plan had to be reviewed despite good evidence of need. This was very stressful for me as an overwhelmed carer.”

The bureaucratic burden of the plan review process causes undue stress for parents and carers, due to the scrutiny placed on their circumstances.

“Takes longer than setting up the initial plan and is always disputed and further examined.”

The need to ‘prove’ that their child’s condition is lifelong can feel re-traumatising for some families. Parents reported difficulties communicating the complexities of their children’s conditions, and some felt that NDIS partners did not advocate for their needs to NDIA.

“Plan reviews have been one headache after another, the staff don’t read the reports fully.”

b. The availability, responsiveness, consistency and effectiveness of the NDIA in serving rural, regional, and remote participants.

“The staff of NDIA I have engaged by phone have been helpful, courteous and understanding.”

Parents reported that NDIA staff were helpful and professional overall, but they did not always understand or the lack of services available in regional areas. This often resulted in plans that did not adequately meet children’s or family’s needs in their local context.

“Took 6 months for OT driving to be added to my adult child’s plan because it was disputed, even though there’s no public transport.”

c. Participants’ choice and control over NDIS services and supports, including availability, accessibility, cost and durability of those services.

The availability, accessibility, and continuity of services are critical areas that need attention in the regional WA context. Issues families reported include serviced interruptions due to staff leave, sometimes an absence of services in their local area, and inconsistencies in service quality. Despite these limitations, where services were available and able to be accessed, parents did describe overall satisfaction with the services they received.

Choice and control can be limited in regional WA due to thin markets and geographical isolation. Often there is a lack of providers or long waiting lists to access services. There are service interruptions due to transient workforce and low population in the regions, leading to an unstable landscape of disability services.

“Lack of providers, long waiting lists. Just not enough people.”

NDIS staff often do not have local knowledge of the region that the family resides in.

kiind.com.au                                                       P a g e 8 | 13

“Information is not easy to access about what providers are around and how we can be helped.” – Parent

NDIS participants in Remote and Very Remote Modified Monash regions are at distinct disadvantage regarding costs for travel. Many families use more than 50% of their NDIS funding to pay for specialist travel, especially where there are no providers in the local area and they need to utilise Fly-In-Fly-Out (FIFO) services or make regular trips to larger regional centres or Perth to access treatment. This results in reduced plan effectiveness and inequitable access – families have less funding for interventions as proportionately more of their funding is paid for provider travel than their metropolitan counterparts.

“Some places won’t accept us face to face because we’re out of area.”

“There aren’t any services in my area. Closest is 30 mins away with a year and a half wait to have the service delivered by an allied health assistant.”

As mentioned previously, families experience significant interruptions and a revolving door of specialists due to the difficulties retaining regional workforces. This can lead to high plan spending with low plan efficacy and slow progress in children’s developmental outcomes.

“Services don’t stay.”

“We’ve had 15 psychologists over 4 years”

Many families find the bureaucratic processes of the NDIS burdensome and confusing. Difficulties navigating the system can be heightened where there are cultural differences or language barriers, limited financial resources, or where a family has previous negative experiences with government institutions.

Aboriginal and Torres Strait Islander communities have different conceptions of disability and many Aboriginal people who would qualify for NDIS plans do not see themselves as disabled (White et al 2021). Normalisation of disability is seen in Aboriginal communities in the Kimberley region of WA, where everybody is included equally in family life regardless of ability; and there may also be shame or stigma attached to labels of disability (White et al 2021, p.7). Where Aboriginal families had the help of a trusted community worker such as a partner in an Aboriginal Community Controlled Organisation (ACCO), this reduced stress and distrust in the NDIS (White et al 2021, p. 8).

Many families may find it challenging to gather all the paperwork necessary for NDIS application, including reports, assessments, and in some instances identity documents such as birth certificates. Many families from low socioeconomic backgrounds do not have reliable access to the internet, computers, or online services that are needed for interacting with the NDIS. Staff in ACCOs supporting Aboriginal NDIS participants in remote WA report a lack of culturally aware information and resources from the NDIA (White et al 2021, p.9).

kiind.com.au                                                       P a g e 9 | 13

These issues highlight the importance of place-based, trusted providers with local workers for assisting Aboriginal and other regional community members to access NDIA and NDIS.

e. Any other related matters Participants need to be seen as part of their family system.

Children and young people with disability rely on their families to achieve a good life. In remote WA, reliance on parents for access to services is heightened due to the ‘tyranny of distance’ and the related disadvantages, costs, and efforts required to receive early childhood intervention (Edwards & Baxter 2013). Many times, support for the family system is not adequately addressed in NDIS planning. NDIS participants - including children – are too often seen as individuals and not considered in relation to their family or community. Many families have multiple NDIS participants, including parents and siblings, each with their own support needs. Parents can be supporting multiple children with complex needs, but their NDIS plans don’t ‘talk to’ each other and the capacity of families to provide support is not understood as a system.

Removing unregistered providers will remove choice and control for families.

Several parents reported concerns that there will be significantly reduced availability of support workers if the NDIS brings in the proposed change requiring all NDIS-funded services to be registered providers. Many regional families rely on local community members to provide care and support for their children, and the removal of this choice presents significant risks to family functioning and child wellbeing.

“Severe lack of support workers which will worsen with forced registration as we were sourcing private support workers locally in the past.”

Recommendations

Develop innovative models of service delivery in regional WA. Addressing the problems of geographical isolation and the ‘tyranny of distance’ that can compound the disadvantages felt by children with developmental delay or disability is crucial to delivering NDIS reform that is fair and equitable for all Australians (Edwards & Baxter 2013).

While workforce issues may persist in remote locations, there are creative workarounds that can improve lives for families and improve developmental outcomes for children. Exploring novel solutions with NDIS participants, their families, and community members makes good economic sense and can create better social impact. Here are some examples of innovative service delivery models for regional, rural and remote communities:

Early childhood screening and intervention - training for frontline workers in place- based community services and other sectors (health, education) to deliver early intervention for families and young children with signs of developmental delay.

kiind.com.au P a g e 10 | 13

Provision of outreach services such as multidisciplinary clinics (FIFO) for NDIS participants to receive regular, coordinated care from a team of specialists during shared appointments - e.g. care team of psychiatrist, paediatrician, speech therapist.
Parent-mediated and community-mediated interventions: providing training for parents and place-based community services to deliver clinical interventions in children’s natural settings, under the guidance and supervision of clinicians based in metropolitan regions.
Provide specialised navigator roles based in regional areas, employed through local services including ACCOs. Introducing specialised place-based navigators to support rural, regional and remote NDIS applicants and participants will improve equitable access to services across WA. These navigators should walk alongside NDIS participants and their families to develop their NDIS plans, link with local supports, and facilitate better coordination of supports in their region.
Aligned with the NDIS Review recommendation 14, implement place based, community-driven responses to improve NDIS access for Aboriginal people, and all participants in remote regions, through alternative commissioning arrangements and local partnerships (NDIS Review 2023).
Increase funding/loading for NDIS participants in remote and very remote regions to meet additional costs of travel to access NDIS services and supports.

Service innovations can streamline services, increase availability of interventions, improve continuity of care, reduce transport costs, and significantly reduce the burden of care on families taking children to far-reaching appointments and managing busy schedules with multiple specialists (Veli-Gold et al. 2023). This type of approach could improve workforce capabilities in regions as well as provide valuable career pathways for carers and workers in community services, including ACCOs.

Develop a ‘whole family approach’ in NDIS for all participants under 18 years Parents and carers provide crucial support for children and young people with disability. However, the needs of carers are frequently not adequately addressed in NDIS planning for children and young people (Kiind 2023). NDIS planning can be ineffective where there are unmet needs or unaddressed strains in the family system surrounding the child or young person. This is especially true for regional families, where isolation leads to greater burden of care and risk of parental or carer burnout, and compounded in families where there are more than one NDIS participant. Family supports, such as travel funding, parent training, respite and childcare services, are essential for family wellbeing and child safeguarding. This is particularly important in regional areas where families are often geographically isolated from their natural supports.

Currently, each NDIS participant in a family is seen as an individual unit for the purpose of NDIS planning and implementation, and not considered in relation to their family or community. Individualistic planning fails to see the full picture of support requirements and protective factors in a family. Foundational supports should be delivered collaboratively between NDIS and mainstream systems, to engage with and support the family, in place. This signals a shift away from the medicalised, deficit-based model of disability towards a strengths-based, integrated approach to child and family wellbeing.

kiind.com.au                                                      P a g e  11 | 13

Strengths-based supports that work with family systems can reduce the burden of care for regional families and improve outcomes for children in the NDIS (White et al. 2021). This way of working is crucial for engagement with Aboriginal communities to overcome worries about stigma and labelling, so families can access the supports they’re entitled to (White et al. 2021). NDIS supports for families and children in regional WA should be delivered through local services – including ACCOs - with strong connections to place and community. NDIS skills can be taught – what is most important to families is the provision of stable, relational support and an understanding of local context and community.

Conclusion

The insights shared by parents and carers for this submission corroborate the findings from numerous studies and reviews about the barriers NDIS participants face in regional, rural and remote settings. In WA, these issues are amplified by its geographical vastness.

To address the lasting impacts that people living regionally have always experienced in WA, the NDIA and NDIS should innovate solutions that meet regional needs in creative and affordable ways.

Families tell us that they need knowledgeable providers, who understand their local and family context, and can link them with supports that enable their children to reach their full potential, regardless of where they live.

Contact information

Kiind welcomes the opportunity to be involved in further consultations for the Inquiry into NDIS participant experience in rural, regional and remote Australia, and we are pleased to receive any communications from the Joint Standing Committee about this submission.

Chief Executive Officer Carrie Clark

Systemic Advocacy Lead Renée Darbyshir

kiind.com.au                                                      P a g e 12 | 13

References

Edwards, B., & Baxter, J. (2013). The tyrannies of distance and disadvantage: Children’s development in regional and disadvantaged areas of Australia (Research Report No. 25). Melbourne: Australian Institute of Family Studies. Retrieved from: https://aifs.gov.au/sites/default/files/publication-documents/rr25_0.pdf

Kiind (2023) Journey Mapping Project Interim Report of Findings September 2023. Retrieved from: https://s3.ap-southeast 2.amazonaws.com/kiind.org.au/app/uploads/2023/09/26134947/JM-Template-FINAL.pdf

NDIS Review (2023) Recommendations and actions. Retrieved from: https://www.ndisreview.gov.au/resources/reports/working-together-deliver ndis/preface/recommendations-and actions#:~:text=Recommendation%2014%3A%20Improve%20access%20to,communities%2 0through%20alternative%20commissioning%20arrangements

Prowse, A., Wolfgang, R., Little, A., Wakely, K., & Wakely, L. (2022). Lived experience of parents and carers of people receiving services in rural areas under the National Disability Insurance Scheme. Australian Journal of Rural Health, 30(2), 208‐217.

Veli- Gold S, Gilroy J, Wright W, Bulkeley K, Jensen H, Dew A, et al. The experiences of people with disability and their families/carers navigating the NDIS planning process in regional, rural and remote regions of Australia: Scoping review. Aust J Rural Health. 2023; 31: 631–647. DOI: https://doi.org/10.1111/ajr.13011

Wakely L, Green E, Little A, Fisher K, Wakely K, Currie K, et al. The lived experience of receiving services as a National Disability Insurance Scheme participant in a rural area: Challenges of choice and control. Aust J Rural Health. 2023; 31: 648–658. DOI: https://doi.org/10.1111/ajr.13000

White, C.S.; Spry, E.; Griffiths, E.; Carlin, E. Equity in Access: A Mixed Methods Exploration of

the National Disability Insurance Scheme Access Program for the Kimberley Region,

Western Australia. Int. J. Environ. Res. Public Health 2021, 18, 8907. DOI: https://doi.org/10.3390/ijerph18178907

kiind.com.au                                                      P a g e 13 | 13