NDIA Accountability Project

NDIS participant experience in rural, regional, and remote areas of Australia

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Phone: 0477 645 577 Email: contact@outbackindependentliving.org.au

Joint Standing Committee on the National Disability Insurance Scheme

PO Box 6100

Parliament House

Canberra ACT 2600

Friday 8th March 2024

Dear the Joint Standing Committee on the NDIS,

Submission to the Parliamentary Inquiry into the NDIS Participant Experience in Rural,

Regional, and Remote Australia

I am writing to submit evidence and insights regarding the implementation, performance, and governance of the National Disability Insurance Scheme (NDIS), particularly in the context of rural, regional, and remote areas of Australia. As the Central and Western Queensland area people with disability peak body organisation of the Queensland Disability Peak and Representative Body Program, we have observed and engaged with various stakeholders to provide comprehensive feedback on the NDIS participant experience.

a. Participant experience at all stages: The experience of applicants and participants at all stages of the NDIS, including application, plan design, implementation, and plan reviews, in rural, regional, and remote areas often faces unique challenges. Limited access to NDIS planners, longer wait times for assessments, and difficulties in accessing required documentation are common barriers faced by participants in these areas.

GB (Mother), JB (Down’s Syndrome, age 36)

GB stated that she spent months and up to a year trying to contact Longreach NDIS Officers. Calls were not answered, and the mobile number provided by the Officer was eventually disconnected as the Officer spent much time on leave.

During COVID, JB’s independent support worker refused to be vaccinated, JB could no longer use his services. His 3 year plan finished in July 2023, at plan review, because the independent support worker wasn’t being used, Jack lost this budget line in his plan. GB intended to go for a family holiday and to arrange respite for JB in May-June 2023, however

Phone: 0477 645 577 Email: contact@outbackindependentliving.org.au

this holiday didn’t eventuate, therefore his budget for supports wasn’t used. GB self-manages JB’s plan - requested a re-assessment for SIL, and at this time, his supports were reassessed and removed because they were not used. A former Longreach NDIS Officer conducted a plan review over the phone. The Officer insisted that his intellectual challenges were a secondary disability however his intellectual deterioration is occurring with age and he has always had OCD and ASD traits that were never assessed formally. OCD and ASD are known traits with Down’s Syndrome, and are not a second disability.

In 2022, OT report given to a Longreach NDIS Officer was lost or was not correctly listed with JB’s plan review. This report was a part of critical plan changes for terrain-appropriate (rural property) mobility transport, buggy.

LK (Mother), JW (child with Down’s Syndrome, age 11)

Early August 2023 - Commenced NDIS application for the second time. September 2023 - Using the services of the Queensland Government funded Access Referral Team (ART) they were able to assist in gathering the information required to get the process truly started. Early October 2023 – Booked appointments with JW’s medical professional, taking along the Access Request Form, functional deficit information, letter of diagnosis etc. Late October - A request for more evidence of the impact of JW’s disability and supporting documentation from his paediatrician. Paediatrician next scheduled visit wasn’t until March 2024 so an email requesting an updated letter of diagnosis was requested. November 2023 - Submitted NDIS application with support from ART March 2024 - Received notification that JW had gained access to the NDIS.

Documentation provided: school plan, intellectual assessment by GP (unable to obtain psychologist assessment as no child psychologist available in Longreach), and assessments from Occupational Therapist and Speech Pathologist along with letter of diagnosis from Paediatrician and a report from JW’s Respiratory Specialist.

Key feedback: ART support has been excellent to support the process and without their assistance we may have once again failed to gain entrance to the NDIS for JW.

Phone: 0477 645 577 Email: contact@outbackindependentliving.org.au

DW (amputee) DW is a well educated, well travelled, independent male who has not utilised much support from his NDIS plan. One of the issues is that he has difficulty obtaining the right advice from the local NDIS Office in Longreach. He has been given inaccurate advice/information in the past and as such he has no confidence in utilising the local service. His plan is currently coming up for renewal and during a pre-plan review meeting recently, he was not provided with any documentation, paperwork, process outlines or genuine support other than being told to ‘bring his paperwork’ to the review meeting.

Central west/ Outback /remote Queensland has never had LAC’s or Partner in the Community (PitC). This can be directly attributed to the low uptake, lack of coordination, awareness and uptake of NDIS across remote Queensland.

Participants’ plans are budgeted based on the availability of services in the region, and not the level of supports their specific disability requires. This is causing a significant issue for thin markets as potential new entrants to remote communities are using misinformed publicly available plan usage data which is showing high plan utilisation. This data is not attracting new service providers to rural and remote regions, as there appears to be no opportunity for new entrants. Simultaneously, people with disability have lost faith and do not apply for a NDIS plan as:

  • there are either insufficient service providers in their community;
  • the service providers available are at full capacity; or
  • there is limited choice for participants to choose from a range of quality service providers.

This was the original intention of the NDIS to provide choice and through this choice, motivate service providers to provide a better, high-quality service. The lack of competition in rural and remote communities causes providers to deliver a lower quality service as participants do not have a choice but to use their service.

Phone: 0477 645 577 Email: contact@outbackindependentliving.org.au

SOLUTIONS:

  • Fund LAC/PITC in Rural and Remote communities to level the playing field and make up for lost time in community understanding, capacity and NDIS access.

  • Ensure that plan budgets are based on the breadth of services and supports required for each individual’s disability needs, as if they were located in a metro area will full access to all their service needs.

  • Continue to financially support ART for rural and remote access, current ART funding ends December 2024.

b. NDIA Responsiveness in rural areas: The availability, responsiveness, consistency, and effectiveness of the National Disability Insurance Agency (NDIA) in serving rural, regional, and remote participants need improvement. Delays in communication, lack of local representation, and insufficient support coordination exacerbate challenges for participants in accessing NDIS services and supports.

Key Issue: there are two methods to connect with the NDIA - via the General Enquiries Line (1800 800 110) or in-person at the Services Australia Office, 92 Galah Street Longreach, with one of the Planners.

There is NO direct number or email address for the Planners in Longreach.

You cannot book an appointment. You can only attend, in-person, to the Services Australia Office. As the key contact for NDIA enquiries, it is unreasonable to expect participants or access applicants from rural and remote communities to drive significant distances, for example Diamantina 305 km from Longreach, to discuss their plan or enquire how to access the NDIS. This is also without knowing that staff will be available when they arrive, we have seen periods (up to 2 weeks unattended) where the office has been unattended by staff due to unforeseen circumstances and staff leave.

Phone: 0477 645 577 Email: contact@outbackindependentliving.org.au

The General Enquiries line, in our opinion, connects callers to information and services, or gives information about a participant’s plan. They cannot make Planner-level decisions. It is important for participants to be able to easily access Planners for critical support for their NDIS plan, and for access applicants have a single point of contact for access related enquiries. The information that this line provides is not localised information that callers would be seeking to receive. As this line is often the first point of call for potential applicants, if the process appears too difficult or unsupported, individuals will simply not return to the NDIS. This is a significant amount of mistrust in the NDIS and large registered service providers in Central Queensland. For example, the overnight closure of Blue Care, leaving 50 participants without supports.

On 29/02/2024 at 11:10am, Google searched ‘NDIS Barcaldine’ to test what information may be available for a parent of a 4 year old needing information about the early intervention program. Found on the Barcaldine Regional Council’s website a pamphlet with a Longreach NDIA Officer’s mobile number listed. Rang this number which was answered by another Longreach NDIA Officer. Enquired about early childhood intervention and was given the following information:

· Program could cover OT and speech services

· Psychologist services are not available. Shared that the child needed emotional regulation support, no solution was provided for psychology services

· Longreach NDIS Officer offered to deliver an information package to my home as the Longreach NDIS Officer was visiting Barcaldine the following week while on

the Services Australia Bus

· This was the first time we were informed about NDIA representatives being available on this Bus

Two days after this call, Google searched this information again to find that the mobile number had been removed from the Barcaldine Regional Council’s pamphlet. There is no direct line to contact this team.

Phone: 0477 645 577 Email: contact@outbackindependentliving.org.au

On 8th March 2024 at 11:13am, called the General Enquiries line (1800 800 110) to enquire about the Early Intervention program as a parent of a 4 year old living in Barcaldine. The agent was not very helpful, said “happy to help” after I ended explaining the situation, the call when quiet as a I waited for a response about my enquiry, the agent then said “are you there?” to which I responded “I thought you were going to answer about my enquiry” and gave no information about the program, then said “putting you through now” and then transferred me to Bush Kids which went to a message bank.

SOLUTIONS:

  • Rural and remote NDIS Offices have a direct phone number that people with disability and/or their families can use to make appointments with relevant NDIS Officers, thereby removing the uncertainty of being able to meet with NDIS Remote Planners.

  • Rural and remote Planners / NDIS Officers are provided with more regular training and support to ensure they are carrying out their roles most effectively and appropriately for their target audience, ie people with disability, possibly who have already had negative health/disability service experiences previously.

  • Resource and fund local organisations who already have connections, knowledge and experience in the region to provide locally based, relevant support coordination.

  • Longreach NDIS Office direct engagement with OIL to provide up-to-date information about their services, remote community visits and other relevant community engagement information so we can share this with our members and community

c. Choice and Control: Participants in rural, regional, and remote areas often encounter limitations in exercising choice and control over NDIS services and supports due to the limited availability, accessibility, and affordability of service providers. Furthermore, the durability of services is compromised due to workforce shortages and geographical isolation.

COVID triggered abrupt cessation of key services in Longreach / Central West Qld of Blue Care and LiveBetter. 50 participants were left without support overnight after the closure. This caused a significant loss of trust in large registered service providers. Families solved

Phone: 0477 645 577 Email: contact@outbackindependentliving.org.au

their own support issues by engaging independent support workers, paying high hourly rates.

NDIS Participants do not have choice and control due to small populations and low demand for services.

SOLUTIONS:

  • Adequately fund and resource local disability organisations to coordinate and connect people with disabilities to relevant services, and to independently develop long term Coordinated Funding Proposals that would overcome issues borne from dispersed Support Coordination and thin markets. This would provide choice and control as well as confidence and security for people with disability and their families by ensuring a long term relationship with a service provider.

d. Particular experience of marginalised groups: Aboriginal and Torres Strait Islander participants, participants from culturally and linguistically diverse backgrounds, and participants from low socio-economic backgrounds face compounded challenges in accessing and navigating the NDIS. Cultural competency, language accessibility, and socio-economic support mechanisms must be integrated into the NDIS framework to address these disparities.

Gaps and low NDIS access/successful NDIS applications in remote communities with higher populations of Aboriginal and Torres Strait Islander peoples.

SOLUTIONS:

  • Additional resourcing of the (NDIA funded ) Remote Service Solutions- Remote Service would facilitate additional access clinics and support forums across remote Queensland. Lack of funding and resources is impacting their ability to help Aboriginal and Torres Strait Islander people with disability to access NDIS and supports.

e. Additional matters: In addition to the aforementioned issues, we highlight the importance of enhancing community awareness and engagement in rural, regional, and remote areas to foster a supportive environment for NDIS participants. Collaborative efforts between government

Phone: 0477 645 577 Email: contact@outbackindependentliving.org.au

agencies, community organisations, and service providers are crucial in addressing systemic barriers and improving the participant experience.

PB (Mother), AB (William’s Syndrome, age 32)

AB’s parents are Longreach locals having both been born here and have worked and lived here their entire life. Their three children grew up and were educated in Longreach, including AB, who resides with his parents.

AB was diagnosed with Williams syndrome at a very early age, the main characteristic being intellectual impairment. AB has a speech impediment, very little reading and writing skills, very little understanding of finance and everyday life skills are a struggle without one on one support. The possibilities of AB having a drivers license, having a relationship, having a family of his own and all of life’s joys that most of us experience are very slim.

For all of the things AB doesn’t have or can’t have he has a beautiful, happy and caring nature teaching us patience, acceptance and what is really important in life. AB has a wonderful life living in Longreach, thanks to our family, friends and the local community.

AB spends 2 mornings every week with his support worker who travels from Barcaldine, 1 hour east of Longreach, this came about when Blue Care here in Longreach closed and support workers were very few and far between.

Wednesday, Thursday and Friday mornings AB works at the local kindergarten, this becoming a paid position since February 2022, thanks to our local Council, prior to being paid AB volunteered at the kindergartens for the past 13 years.

Friday afternoon is spent volunteering at Coola Carpets, our local furniture store.

Every local race meeting AB can be seen helping the barrier team, this is also a small paid position for him.

During the local rugby league season AB is at every training session, he just loves being with the boys and this year the committee held a woman in league round, putting out a special jersey displaying the Outback Independent Living logo, the jerseys were then auctioned. Two of the successful bidders then gave their jerseys to AB.

Phone: 0477 645 577 Email: contact@outbackindependentliving.org.au

AB leads a very busy and fulfilled life here in Longreach, he is very safe, very well known and has a wonderful rapport with his health professionals, AB’s parents say he has a bigger fan club than Mickey Mouse.

As we are ageing our greatest concern is for AB’s future for when the time comes and we are no longer able to care for him, this concern is felt by every parent with a child with special needs, I am sure.

Many families left some time ago, some just recently and many considering leaving. In the disability sector we often hear the words ‘choice and control’, at the moment we have absolutely no choice and very little control of where we can live permanently in Outback Queensland.

Longreach is home to AB, the only home he has ever known but at this point in time the future of AB staying in Longreach is very unlikely due to the lack of accommodation for our loved ones with special needs, should AB have to leave Longreach the adverse effect both physically and mentally would be insurmountable.

AB’s parents want the best for AB and we believe the best is here in Longreach.

This speech was written and delivered by AB’s mother for the ministerial visit by Queensland State Disability Minister Crawford and other state and federal parliamentary officials in September 2022. In February 2024, AB’s parents announced that they would be moving to a coastline town of Central Queensland where AB has been accepted into a permanent accommodation facility. This decision was immensely difficult for this family and will have a profound impact on AB and the Longreach community. AB’s family had hoped that the new social housing townhouses on Wompoo Road would be sufficient accommodation for AB, however, he would be living amongst the general social population putting a vulnerable person at risk. He also was unable to find two other participants to live with him at the new social housing townhouses to satisfy the ratios required in his NDIS plan.

Accommodation options in Central Queensland are non-existent, and there are currently at least two individuals with an NDIS plan living at the Pioneers Aged Care facility in Longreach, because there is no SIL or SDA accommodation available. The number of individuals in Central Queensland with SIL or SDA in their plans is limited so it is unattractive for service providers to enter the region to provide this service.

Phone: 0477 645 577 Email: contact@outbackindependentliving.org.au

Simultaneously, individuals have not been correctly assessed for SIL or SDA because of the following reasons:

  • Availability of occupational therapists to complete assessments
  • Initiative of planners and support coordinators to push for SIL or SDA assessments
  • Lack of service providers and accommodation options available causing families to leave the region as long term accommodation is not available

Queensland Social Housing built 6 townhouses, made available in October 2023, three were gold disability standard. Families of adult children with disability wanted to apply for these homes, however:

  • Houses were 1 to 2 bedroom, meaning care the ratios would be 1:1 which is not in line with their plans

  • Vulnerable people with disability with intellectual disabilities would live amongst general social housing population including ex-incarcerated, ex-drug addicted individuals, families saw this as a significant risk and did not apply for the housing

SOLUTIONS:

  • Change of rules to allow 1:2 or 1:1 ratios in remote communities, instead of 1:3

  • Support from social housing to redevelop existing properties (3-4 bedroom houses) allowing for 1:2 or 1:1 ratios. House location within the Longreach community and not within a social housing precinct where vulnerable participants would be at risk.

  • NDIA support for more coordinated funding proposals, working with OIL and support coordinators to identify and fast-track participants for assessments.

In conclusion, addressing the challenges faced by NDIS participants in rural, regional, and remote Australia requires a concerted effort from policymakers, service providers, and community stakeholders. By incorporating local context, enhancing service delivery mechanisms, and prioritising the needs of marginalised groups, we can ensure the NDIS fulfils its promise of empowering individuals with disabilities to lead fulfilling lives.

We believe that people with disability can thrive in Central Queensland by the NDIS and Queensland State Government working with the Central Queensland local communities and

Phone: 0477 645 577 Email: contact@outbackindependentliving.org.au

local governments, so that every individual with disability in the region can gain access to and have a choice of supports, accommodation options and individual capacity building to meet their individual needs.

Thank you for considering our submission. We remain committed to supporting the ongoing improvement of the NDIS and look forward to contributing further to this important inquiry.

Yours sincerely,

Leanne Kohler

President of Outback Independent Living Inc.