Submission 93 — People With Disabilities WA — NDIS participant experience in rural, regional and remote Australia | External submission

people with disabilities western australia

NDIS participant experience in rural, regional and

remote Australia

Joint Standing Committee on the National Disability

Insurance Scheme

People With Disabilities (WA) Inc.

Chair: Nihal Iscel

Chief Executive Officer: Brendan Cullinan

Report Author: Danielle Loizou-Lake

City West Lotteries House, 23/2 Delhi St, West Perth, WA 6005

Email: brendan@pwdwa.org

Tel: (08) 9420 7279

Country Callers: 1800 193 331

Website: www.pwdwa.org

Page

People With disabilities WA (PWdWA) 2

1.  Executive Summary                                 2

2. Acknowledgments 2 3. Summary of Recommendations 3 4. Introduction 4

Problem Statement 4
Methodology 4
Findings 7
Recommendations 16 9. Conclusion 18
Word List 19
References 20 1

People With disabilities WA (PWdWA)

PWdWA is the lead member-based disability advocacy organisation representing the

rights, needs, and equity of all Western Australians with a physical, intellectual,

neurological, psychosocial, or sensory disability via individual and systemic advocacy.

We provide access to information, and independent individual and systemic advocacy

with a focus on those who are most vulnerable.

PWdWA is run by and for people with disabilities and aims to advocate for the rights

and empower the voices of all people with disabilities in Western Australia.

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Executive Summary
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This report has been produced by advocacy organisation People with Disabilities

Western Australia.  The purpose of this report  is to provide the Joint Standing

Committee, insight into the Western Australian lived experience of the National

Disability Insurance Scheme (NDIS) in rural, regional and remote parts of the state.

The report responds to the terms of reference by interviewing people with disability

living in rural, regional and remote parts of Western Australia. The findings with

recommendations are detailed in this report.

Acknowledgments PWdWA would like to acknowledge the contribution of the 19 people who were

interviewed to provide the contents of this submission and their enduing spiriting

toward improving the NDIS for all Western Australians.

PWdWA also acknowledges the cooperation of the following organisations:

Advocacy WA
Explorability
Great Southern Community Legal Services 2

Summary of recommendations The full recommendations based on the findings from this consultation are presented

on page 16. Below is a high-level summary of the recommendation areas.

NDIS Application process support
Improve NDIA communication and follow-up
Improve mainstream service interface
Develop NDIS regional context and support
Address availability, quality and cost of disability services
NDIA to become a more culturally appropriate agency
Fairness in Administrative Appeals Tribunal (AAT) 3

Introduction In Western Australia over 411,500 people live with disability, this is around 15 percent

of the WA population (1). Seventy nine percent of the WA population lives in the Perth

area leaving the remainder of the state sparsely populated. Western Australia is

Australia’s largest state, with a total land area of 2,527,013 square kilometres (2). This

makes Western Australia’s disability ecosystem different from any other state in

Australia. People living in rural and regional towns may be hundreds or thousands of

kilometres from Perth where they need to access specialist disability services. Eighty

nine thousand Western Australians identified as being of Aboriginal and/or Torres

Strait Islander, with over 95% of this group identifying as Aboriginal (2). A large

proportion of the Western Australia Aboriginal community live outside the metropolitan

area. In the local government area of Derby-West Kimberley, Aboriginal people make

up 60.3% of the population and in Broome 28.6% of the population (2). In these areas

the NDIS and disability services should be culturally appropriate and fit for purpose.

Problem Statement This report highlights where the national roll out of the NDIS has met the needs of

people living in rural, regional and remote areas and where there remain opportunities

to rethink the current approach. With Western Australia’s unique geography, people

in rural, regional and remote communities have limited choice and variable quality of

providers. Aboriginal Western Australians have a right to continue their connection to

country and remain living on their ancestral lands. However, despite the NDIS’s Rural

and Remote Strategy 2016-2019, Aboriginal people do not report easy access to the

National Disability Insurance Agency (NDIA). They reported they often cannot access

supports where they live and report no known efforts by the NDIS to support or

strengthen the capacity of their local community (3).

Methodology PWdWA invited rural, regional and remote people with disability to participate in an

individual meeting or focus group. Overall, 19 Western Australians with a range of

disabilities participated from across the state (see table 2). Those who participated

received a $50 gift card as recognition of the time they gave to contribute to this

submission. Thirteen in-depth interviews of 45 minutes to 1 hour were conducted

either face to face, via video conference or phone depending on the person’s

preference and if they had access to internet. One group interview was conducted for

six people from the very remote community of Balgo.

Demographic

Of the 19 people that participated in this consultation:

12 identified as male and 7 as female
Ages ranged from 7 to 70 (see graph 1)
8 people identified as Aboriginal

Age of Interviewees

80 70 70

58 60 55

52   52                                                              50   50                                                     48   48

50 46 42 39 40 40 34

18 20 16 10 11 7 10

0  I I I      I       1    2    3                     4 I5    6    7    8    9   10   11   12   13   14   15   16   17   18   19

Graph 1- Age range of consultation participants

Geographic location

People were interviewed from across the state of Western Australia, including the

Kimberly (10), Pilbara (1), Mid-West (1), Wheatbelt (1), Goldfields (1), South-West (3)

and Great Southern (2).

D rby

Igo q e Cxmo..it h ..

W ES R N

A USTRALIA

G r ldton

Bould  r               Dow  rln  q     q

P erth

Boyanup

Mount Barker

Image 1- Map of consultation participants

Disability type

Disabilities identified by participants Self-reported*

Physical 6

Deaf/ Hard of Hearing 1

Blind/Low vision 2

Cognitive 6

Neurodevelopmental 3

Psychosocial 4

Intellectual and Developmental 2

Table 2 – Disability types reported*

*Some consultation participants reported multiple disabilities.

Findings The findings are organised as per the Joint Standing Committee Terms of Reference

inquiring into the implementation, performance and governance of the NDIS. The

consultation findings below report on the Western Australian’s participants experience

of the NDIS in rural, regional and remote Western Australia.

7.1 Participant experience of stages of the NDIS

Application to become a participant: Some people transferred from the existing

state-based system to the NDIA, they said this process was simple. Some adults

found it very difficult and overwhelming, while others who were supported by the health

system while in hospital found it much easier. Parents required to apply for their child’s

access found the process emotionally sensitive and challenging, especially while

dealing with their child’s diagnosis. Some had help from professionals like speech

pathologists,  while most  others  felt overwhelmed and  isolated  without proper

guidance.

Plan design and implementing plans: The majority of people stated they would

prefer face to face meetings for better communication and understanding. All nine

Aboriginal people interviewed said they would like to talk with a person face to face.

Some people stated the planners were distant and didn’t record their personal

information correctly. Some parents of child participants reported positive experiences

with planners who listened to their child’s needs and goals while others felt like their

child was treated as just a number, lacking empathy from NDIA planners. When plans

were received several respondents mentioned difficulties in understanding their plans

and how to implement them. Some also faced challenges in implementing the plan

due to limited provider options or inadequate support to engage providers.

Plans automatically extending or ‘rolling over’: Many people stated their NDIS

plans have auto extended or ‘rolled over’ for many years without having the opportunity

for a review. This was particularly evident in Aboriginal communities where seven out

eight people interviewed said their plans had rolled over for more than four years

without hearing from a NDIA representative. People suggested they would like to be

contacted to ask if they want their plan to roll over or if they need to review their

supports.

Communication issues and lack of follow-up: Many participants expressed

frustration with communication gaps from the NDIA, such as not receiving timely

updates or follow-ups on their requests or changes errors in the plan, management

types or change in circumstances. Most participants reported their frustration with not

being able to contact a person in the NDIS that could assist with a request. It was

commonly heard that after a planning meeting participants and parents couldn’t

contact the person they just had the meeting with resulting in time consuming and

frustrating calls to the NDIS 1800 number and email to enquiries@ndis.gov.au that

took months to be responded to. Participants and parents who did not have access

to a support coordinator expressed significant feelings of being unsupported and

overwhelmed.    Shockingly  three  families  interviewed  reported  psychological

breakdown resulting in medical support for the parent attributed to the NDIS process.

Respondents suggested that a NDIA officer or team be allocated to participants’ case,

particularly in the circumstance of planning meetings that are not completed and need

follow up. It was repeatedly suggested that the same NDIA officer or team should be

required to follow up the participant or family, until the review is fully completed and

the participant is able to implement.

Regional context and support: There were concerns about planners from major

cities lacking understanding of regional challenges and needs. Participants suggested

better training for NDIA staff or having equipped local offices, to improve support for

individuals living with disabilities in regional areas. Many participants and families

suggested better linkages between health, education systems, and the NDIA, parents

in particular felt an overwhelming responsibility to be the link between these services

that often worked in isolation resulting in gaps. For example, school and NDIS

behaviour support, and NDIS therapists not being able to attend schools. Some

people stated the previous Western Australian state based Local Area Coordinator

models was much more effective at linkages and support for families. One mother

commented that the NDIS experience ‘is very lonely’ and another stated they are

‘constantly in fear of funding changes’.

Legal challenges and appeals: Through the plan review process some people

experienced legal challenges with the AAT. Some reported feeling coerced or bullied

by NDIA lawyers during this process. They emphasised the need for fair legal

representation, stating if the NDIA had lawyers for the AAT, the participant should also

have funded access to lawyers.

Case example: Parents’ experience of NDIS stages (Bunbury)

*names changed

Background:

The Johnson family* automatically met NDIS access for their teenage daughter,

Emily*, who has Downs Syndrome when transferring from the WA state-based

Disability Service Commission. Their experience with the NDIA was marred by

bureaucratic challenges and significant emotional strain.

First planning meeting:

The initial meeting left the parents feeling like ‘Emily was just a number from day 1’.

The  process  lacking  personalisation  and  empathy.  They  struggled  with

understanding the ‘evidence requirements’ and felt lost in navigating the complex

process.

Plan received and review meetings:

Constant funding disapprovals and impersonal plan review meetings added to the

family’s stress. They reported feeling like failures as parents and faced emotional

distress due to the NDIS rigid criteria for specific evidence and technical language.

‘We are two ordinary working parents, that couldn’t understand the language and

evidence that was needed’. The family progressed to the AAT to have Emily’s

funding issue addressed and their request for the funding change was accepted by

the NDIA lawyers before AAT hearing. The family felt that the NDIS process was

unnecessarily burdensome and psychologically traumatic.

Communication with NDIA:

Communication with NDIA was unresponsive and often frustrating. Updates were

not made, and issues were ‘fobbed off’, leaving the family feeling unsupported.

Improvement suggestions:

The family highlighted the need for more empathetic, professional and personalised

communication; NDIS staff being better trained to understand developmental life

stages of children with disability; NDIS providing a case officer to complete or see

through a matter (e.g. a plan review); and better disability regional planning and a

deeper understanding of families’ challenges in the regions. They also emphasised

the importance of access to advocacy services, support coordination and plain

English communication from the NDIA.

7.2 Communication and performance of the NDIA

Availability

Many expressed confusion about the availability of local NDIA offices. For example, an individual mentioned not knowing if there is an officer or Partner in

Community office in Bunbury, highlighting the lack of clear information on local

service points. People in remote communities did not know who to talk to about

getting disability supports. In larger towns such as Broome and Derby the NDIA

offices are co-located with Centrelink, with many Aboriginal people reported

having ‘bad experiences’ with Centrelink and won’t go into the office.

Several participants mentioned difficulties in accessing direct communication channels with the NDIA, such as face-to-face meetings or contact numbers to

reach specific personnel. This limited availability hindered effective interaction

and resolving plan issues.

Responsiveness

There were complaints about the NDIA’s poor responsiveness and long waiting times to a request, particularly for change to a plan or assistive technology. For

example, many individuals mentioned that requests logged by phone to the

1800 number or to the enquiries@ndis.gov.au were not addressed for months.

Some participants and families reported waiting over six months to hear from

the NDIA about important requests which is not in line with the NDIS Participant

Service Guarantees (4).

Many expressed a desire for more accountable communication systems from the NDIA, where queries are efficiently handled, and follow-ups are conducted

in a timely manner. Many people report the NDIA is similar to Centrelink with a

feeling you are being ‘fobbed off’ and that it’s unlikely they are going to help

with their enquiry.

Consistency and effectiveness

Many individuals highlighted inconsistent experiences with NDIA staff, such as not speaking to the same person twice or encountering different people each

time they contacted the agency, receiving conflicting information about their

issue, and when it may be resolved.

Concerns were raised about inaccurate documentation and incorrect personal information being recorded by the NDIA, leading to confusion and delays in

accessing supports.

Participants reported spending significant time and effort navigating NDIA systems and administrative functions instead of focusing on their goals and

priorities.

Case example: Communication Challenges  in Change  of Circumstance

(Boyanup)

*name changed

Background:

Sally* underwent a significant change in circumstances due to a second leg

amputation, requiring a Change of Circumstance (CoC) with the NDIS.

CoC Process:

The CoC was initiated with the help of her Occupational Therapist (OT) in August

Sally engaged in a planning review over the phone with the NDIA but was advised to come back with more specific evidence. Reports were submitted in

September 2023, but there was no response from the NDIA for months. Sally was

not able to contact the planner and felt like she was back at ‘step 1’. Sally made

multiple attempts to follow up the NDIA via email and 1800 phone number. In

January 2024 Sally visited the Bunbury NDIA office in person and asked them to

follow up her review. A response came from the NDIA in February 2024 with a

planner (six months from the initial meeting), calling Sally suggesting her plan should

‘roll over’. Sally stated she was ‘overwhelmed and exhausted, trying to adjust to life

as a double amputee’, she accepted the roll over. However, her significant change

in disability needs still has not been met. Sally does not have the wheelchair or

mobility scooter she requested in her change of circumstance. Sally felt the planner

who called her from Melbourne lacked context about living with a disability in the

South West of WA and seemed uninterested in her individual circumstances.

Suggestions for improvement:

Sally suggested the following would have helped her.

A follow-up system after pausing or abandoning the planning meeting to ensure a participant doesn’t fall through the gap leaving their issue

unresolved.

•  Improve response times  to CoC requests and requests  for  Assistive

Technology (AT).

Provide better training and understanding for NDIA staff regarding regional disability experiences or develop local offices for more local, personalised

support.

7.3 Choice and control over NDIS services

Availability of services

In most regional hubs like Bunbury, Albany and Broome participants can access most therapy supports, however due to limited providers participants reported

a waitlist ranging from 3 – 18 months. For specialised services like prosthetics

and customised wheelchairs people are required to travel to Perth.

However, in remote areas and communities, access to therapists and support workers is limited to not available. For example, therapists travel 220kms from

Broome to Derby requiring significant travel and expense to the participant’s

funding. In a remote community such as Balgo there are almost no supports

available. Some local people have been given basic training to deliver daily

living supports, however participants report issues with them being unreliable.

There are no therapists available in Balgo and many other remote Western

Australian communities.

In rural and reginal towns most people reported they can get the equipment they need. Most regional hubs have small aids and equipment stores for

general needs. Other more specific equipment was transported from Perth.

The challenge was when people needed to be measured or trial equipment that

was only available in Perth, that they were required to travel. For some people

the costs associated with travel were prohibitive to them getting the equipment

they require.

In most regional hubs people reported they were able to get the trades to do home modifications. However, the delays in getting home modification were

often reported as NDIA administrative delays to requests.

In remote towns communities where housing was owned and managed by Department of Communities (DoC), people reported not having suitable

accessible accommodation. Better interface between NDIA and DoC was

noted to be able to progress with necessary home modification.

Accessibility of services

Some individuals reported issues with the accessibility of services due to long wait times for equipment, and difficulties in finding experienced therapists or

support workers in their area.

•  Children and  parents  in  regional  areas  face  challenges  in  accessing

recreational and inclusive programs for their children, leading to isolation and

limited opportunities for social engagement.

In remote Indigenous communities, there’s a need for culturally sensitive and community-focused approaches, including dedicated local support workers,

better governance, and improved NDIS understanding.

Cost of services

The cost of services varies widely, with some areas experiencing inflated prices due to limited providers and high demand.
People reported therapists’ fees have significantly increased under the NDIS, making it challenging for families to afford ongoing therapies, especially in

regional or remote locations.

The cost of respite or short-term accommodation in the remote town of Broome was quoted to a participant as $13,051.01 for one week.
The cost of visiting therapy supports to remote communities was seen as exorbitant and beyond what participants plan could accommodate (see case

example).

Durability of services

Quality and consistency of support workers are major concerns, with reports of variable quality, lack of qualifications, and high turnover rates.
Some individuals had positive experiences with agencies that allow them to engage in ‘shared management’ where the participant can be involved in

interviewing and engaging their support workers.

People express a desire for more control over their funding, including the ability to hire independent local support workers in remote areas.

• Some people suggested the NDIA should provide access to subsidised

professional development opportunities for support workers.

Case example: Cost of services in very remote aboriginal community of Balgo

In Balgo, five of the people interviewed required a Functional Capacity Assessment

(FCA) for their NDIS plans to better reflect their disability supports needs. The

support coordinator spent a lot of time sourcing quotes and the following two were

received:

Provider out of Darwin: $6,000 per FCA
Provider out of Broome $4,100 per FCA 14

A participant in Balgo required ongoing physiotherapy, the following quote of

$26,889.66 was provided for 12 months:

Fortnightly telehealth appointments: 26 hours direct
Quarterly face to face appointments: 4 hours direct
Indirect travel time (5 hours per trip): 20 hours indirect • 1 hour per month indirect clinical time for monthly correspondence,

resources, home program, liaison with medical team: 12 hours indirect

Non-labour cost: $6,000 ($1500 per trip) 62 hours at very remote rate $336.93 per hour = $20,889.66 + $6000 non labour.

Total: $26,889.66 per annum

7.4 Particular experience of Aboriginal and Torres Strait Islander participants

Of the eight Aboriginal people interviewed with their support person, they reported

several challenges and issues with the NDIS specific to their cultural and community

contexts:

Limited understanding of NDIS: Some individuals rely on friends or support

coordinators to navigate the NDIS process because they themselves don’t fully

understand how it works. They don’t want to have the ‘shame’ of making the wrong

decision so are particularly vulnerable to what people tell them to do. For example,

interviewees  reported  unscrupulous  providers  of  disability  support  exploiting

Aboriginal people, by taking their funding and either not delivering support or providing

sub-standard care.

Communication barriers: Language and communication barriers result in NDIA

communications during phone calls often not being understood. Many participants

have expressed the need for face-to-face meetings instead of phone meetings, as they

find it hard to understand over the phone and prefer personal interactions. Information

sent by NDIA is often posted, many Aboriginal people interviewed in regional and

remote  areas  said  they  cannot  read,  highlighting  the  need  for  alternative

communication methods.

Challenges with support: It’s challenging for people in remote communities to access

support workers and therapists. In regional hubs such as Broome and Geraldton

better access to support workers and therapist was reported. Some service providers

lack trust within the community, leading to low participation and inefficiencies in service

delivery.

Cultural sensitivity: There’s a need for NDIA officers who understand the local

context and culture to provide more effective and culturally sensitive support. NDIA

offices being co-located with Centrelink was repeatedly noted as not appropriate,

intimidating and a barrier to accessing the NDIS. People asked for a relationship

based approach where local people with local knowledge can gain employment with

the NDIA and support their community to understand it better. NDIA offices, staff and

resources should reflect Aboriginal people. All Aboriginal people interviewed said they

wanted to be more involved and to understand their NDIS better.

Financial abuse and cultural sharing: There are concerns about financial abuse,

especially regarding NDIS transport funding being misused or taken by other family

members.

Recommendations Based on the consultation findings regarding the participant experience in rural,

regional,  and  remote  Western  Australia  under  the  NDIS,  the   following

recommendations are proposed:

8.1 Application process support

Provide appropriate support and guidance for people and families applying for access.

• Simplify the application process for people living in regional and remote

communities.

8.2 Improve NDIA communication and follow-up

Prioritise face-to-face meetings for better communication and understanding, particularly for Aboriginal participants.
Ensure planners record personal information accurately and demonstrate empathy towards participants’ needs and goals.

• Establish a system to contact participants for plan reviews before auto-

extending plans.

Improve communication channels and responsiveness by assigning dedicated NDIA officers or teams to follow up on unresolved issues.

8.3 Improve mainstream service interface

Strengthen linkages between rural, regional and remote health, education justice systems and the NDIA, to reduce gaps in support, especially for children

and Aboriginal participants.

8.4 Develop NDIS regional context and support

Employ and develop local NDIS officers that understand the local context.
Provide better training for NDIA staff on regional challenges and needs.
Ensure local NDIS offices are culturally appropriate, particularly in the Kimberly and Pilbara regions.
Do not co-locate the NDIA with Centrelink offices. 8.5 Address availability, quality and cost of disability services
Address long wait times for NDIS enquires for equipment and changes to plans.
Improve accessibility to therapists and support workers in all regional and remote areas, considering the specific needs of Aboriginal communities.
Develop the quality of support workers and reduce turnover rates through sector support and professional development opportunities.
Provide opportunities to empower participants to have more control over their funding and support choices, including the ability to hire independent support

workers.

Address cost barriers and inflated prices in very remote areas.
Address unscrupulous providers exploiting vulnerable participants. 17

8.6 NDIA to become a more culturally appropriate agency

Enhance cultural sensitivity and understanding within the NDIA, including employing local staff with local knowledge.

• Develop alternative communication methods and provide face-to-face

interactions to overcome language barriers and improve understanding.

8.7 Fairness in Administrative Appeals Tribunal (AAT)

•  Ensure  fair legal representation  for participants during the AAT process,

including access to funded lawyers.

Conclusion

The results of this consultation suggest the need for a more integrated and responsive

approach in rural, regional, and remote Western Australia. The NDIA should give

attention to improving communication gaps, developing agency understanding of

regional markets and enhancing cultural sensitivity. NDIS access and implementation

should be better integrated with health, education and justice systems to prevent

people falling through the gaps. Importantly for the NDIS to develop in the regions,

individuals should be supported  to develop  their capacity to use the scheme,

prioritising participant involvement and empowerment, however this must be done at

a  local  level using a  relationship-based approach.   Giving  attention  to these

recommendations will enhance the overall participant experience and outcomes under

the National Disability Insurance Scheme.

Word List Accessible: refers to environments, resources, or services that are designed or

modified to be usable by people with disabilities.

AAT: Administrative Appeals Tribunal

Carer: Friends or family who support the person with disability. Carers are people who

provide support that is unpaid and not part of a paid work or community work

arrangement.

Disability needs: assistance, equipment and adjustments to help a person with

disability in their daily living and in their community.

Disability: This paper speaks to the social model of disability.

DoC: Department of Communities Western Australia

Inclusive: people with disabilities are fully integrated and actively participate in all

aspects of society without barriers.

NDIA: National Disability Insurance Agency

NDIS: National Disability Insurance Scheme

PWdWA: Western Australian disability advocacy organisation People with Disabilities

Support Person: either a Carer or Support Worker

Support Worker: A person employed or otherwise engaged to provide disability

supports and services for people with disability.

Therapist: referring to Occupational Therapist, Speech Pathologist, Physiotherapist,

Podiatrist and Psychologist.

References 1. A Western Australia for Everyone: State Disability Strategy 2020-2030.

Department of Communities. Government of Western Australia.

Australian Bureau of Statistics. (2022, June 28). Snapshot of Western Australia. ABS. https://www.abs.gov.au/articles/snapshot-wa-2021.
Rural and Remote Strategy 2016-2019. National Disability Insurance Agency. Commonwealth of Australia.
1. National Disability Insurance Agency. Participant Service Guarantee.
Retrieved March 2024 [https://www.ndis.gov.au/about-us/policies/service-

charter/participant-service-guarantee].

5.  Australia’s  Disability Strategy 2021-2031. Department of Social Services,

Commonwealth of Australia.

UN General Assembly, Convention on the Rights of Persons with Disabilities: available at: https://www.refworld.org/docid/45f973632.html [accessed March

2024].