Addressing NDIS service availability in regional, rural and remote areas | External submission

Parliamentary Joint Standing Committee Hearing

1 November 2024 Bendigo

Inquiry into Rural, Regional and Remote NDIS participant activity

1.45pm session

RIAC Presentation Pack

Delegation:

Dr Sandy Ross, CEO
Alex Riemers (RIAC Lived Experience Advisory Committee)
Loretta O’Neill (First Nations Disability Advocate, Shepparton)
Cristie Stewart (Access and Support Officer, Bendigo)
Dr Anna Fry (Team Leader/Snr advocate, Geelong) 1

SANDY

RIAC History
Catchment
Who is our delegation – introduce each person, advise each can speak to different perspectives on the inquiry issues.
Key themes for Inquiry: o distance, delays, travel costs, lack of access to supports and services o disadvantaged groups further disadvantaged by these things o harder to get onto the NDIS; once on it, difficult to get a Plan in place that can be implemented and stay relevant to complex needs. NDIS requirements/decision making often seems to lack appreciation of circumstances and barriers due to isolation, distance, lack of access to services and supports.

A key issue for clients attempting to access NDIS, or participating in the Scheme is the lack of service availability and options in their community. This has a range of impacts that create or compound disadvantage, noting there is a wealth of evidence that people in regional, rural and remote communities have poorer health and higher levels of poverty.

Few service provider options creates an even greater power differential between service and client. Both service and client know the client is often unable to choose to go elsewhere, and may be put in a position of dependency, or be forced to put up with poor service. There is relatively less control/choice for people in regional, rural and remote areas
Cherry picking of clients by services is a greater problem – for example, support coordination or other services such as employment agencies have been observed refusing to provide services to clients seen as too demanding or difficult (but clients have no alternative options). There are also problems with insufficient LACs to meet demand.
Fewer options lead to long wait times for the few that are accessible.
Fewer options impact on cultural safety, privacy and conflicts for people
Lack of respite options for carers. Another issue that combines with poor service options to create significant disadvantage for people living in regional, rural and remote areas is Distance.
Often the only way to access relevant professional assistance identified in client plan – OT, physio, specialists, psychologists – is by time consuming and expensive travel.

For many, their disability and/or lack of financial resources means compromised mobility/capacity to travel to where services are. Costs of getting there (including support workers, accommodation needs, time) sometimes just means they cannot afford to access the services their plan theoretically provides for.
travel time to clients for service providers quickly soaks up NDIS budgets to fund them.

We have seen interactions with NDIA asking client if they have considered moving to live closer to services. Housing costs, lack of supply and poverty often force people to live remotely and give them few alternatives. We believe the NDIA consistently underestimates the impacts of these issues on participants, or those attempting to access the Scheme.

Recommendation 1: A program of work to be undertaken to improve the understanding of NDIA of regional/rural/remote locations and participant circumstances and its flexibility in responding to the challenges experienced by people living in these areas.

Recommendation 2: That the NDIS Quality and Safeguards Commission put dedicated resources into monitoring and addressing complaints and concerns about service providers in rural, regional and remote areas. That the Commission pilot arrangements to coordinate with the NDIA and/or fund referral to independent advocacy services to enable auditing of participant services where rural/regional/remote location participants rely on a single service provider to provide multiple supports.

From Alex:

Audio presentation – read out by other delegate if problems with audio

ALEX

Hello, my name is Alex Reimers and I am an active participant in the NDIS and have been since it first rolled out in 2013, and I’m here today to give an account of my lived experience while being a participant of the NDIS. Previously to the traumatic hiccups I’ve been having with the NDIS which I’m about to disclose in this statement, I was on a plan that supplied me with the funds to live independently of my mother who was my primary caregiver up until 2018. A part of my plan had the appropriate funds for 24/7 care but it also allowed me to succeed in all areas of my life.

I have cerebral palsy, and am considered a GMFCS 5, which means I am quadriplegically affected by my Cerebral Palsy in such a way that my only independent mobility is via an electric wheelchair over short distances. I need assistance into the chair, out of the chair, onto a toilet, off a toilet, I am unable to independently ambulate, my fine motor control does not allow me to eat, dress, drink, brush teeth etc independently, I am completely reliant on my support workers to survive and thrive.

I was put on a temporary plan in December 2023, as I was not informed by NDIS, my support coordinator or anyone else that a functional capacity report was necessary for the yearly scheduled review. We were not asked to provide of one of these since 2019 when I first moved out of home, so we had no idea what it was nor that it was an ongoing necessity. As soon as we were made aware, we sourced an OT who unfortunately strung us along for 5 months saying the reports were nearly done, then at the last minute sent an email saying that she was not capable of doing the report and we needed to find help elsewhere. (This OT has been reported to the NDIS safeguards commission)

Against all odds, we found an OT from the OT group who was experienced, qualified and very capable. This team was fabulous and they prioritised me, but the process still took around 6 weeks and this was fast tracked best they could, the FCR/SIL are really extensive documents. These comprehensive reports are now in, we stayed in contact with NDIS best we could throughout this process, but were told time and time again that there was no way to get in a queue without the report finished so we had to wait. We are aware that there are wait times, but to the best of our ability we did what was asked and as quickly as possible. With all these unforeseen delays my temporary funding was going to run out in less than two weeks and we had to contact Bill Shorten, the founder

of the NDIS and Lisa Chesters, our local MP directly to help rectify this issue, after not hearing from either we contacted the Bendigo Advertiser to publish an article about our lack of funding and support and we had contact directly from the NDIS only after the Bendigo Advertiser became involved with 5 days left on my temporary plan. I have been placed on yet another temporary plan for 12 months but there is not enough funding to last the whole 12 months, once again putting my freedom, my life, my independence, my community contribution and most importantly my safety, health and wellbeing all at extreme risk.

With my new temporary plan they are asking that I supply them with a pile of supporting evidence, documentation and assessments including but not limited too;

Mid-Cost AT supporting letter
Supported Independent Living / Specialist Disability Accommodation (SIL/SDA)

Assessment Report

Physiotherapy Report
Continence assessment
Speech assessment
Cognitive behavioral assessment
Functional Independence assessment
Behavioral Supports assessment
WHODAS assessment
Functional Capacity Assessment
Occupational Therapy report
Psychologist report Against what everyone told my family was possible for me, I am living my life independently and not only surviving, but thriving. I am on 4 disability committees and advocacy groups including RIAC, was granted a scholarship to train in leadership for Cerebral Palsy Support Network (CPSN) and have completed this training and utilize the skills I acquired to advocate for other people with disabilities. I am a signed model with Diversity Models and recently appeared in an ad for the Bendigo Airport, did some work making videos around access and inclusion for the Bendigo law courts and will be working with Bendigo Tourism to promote Bendigo’s accessible tourism. I am very active in my communities, of which I have many and I have recently launched a program at primary schools around disability inclusion and awareness. I am often in the paper as a voice for disability advocacy and none of this would have been possible without NDIS.

The NDIS, is something I am eternally grateful for, it changed the trajectory of my life and gave me the room to find and flourish in my own forms of self expression and to thrive within my community. I was born with cerebral palsy (CP) and acquired Complex Post Traumatic Stress Disorder (CPTSD) through surgery and abuse from a step grandfather. The CP affects my mobility severely - all limbs, trunk and speech. To independently mobilise I need an electric wheelchair, I have an iPad attached to my wheelchair to help me communicate as I am considered non-verbal by professionals, I am incredibly communicative though and recently published my own book of poems and had an article published in a magazine, I use my iPad to be clearly understood by those around me that are not used to my particular cerebral palsy style of dialect.

With my CPTSD, NDIS is suggesting that it’s not directly related to my cerebral palsy and therefore believe I am not in need of 24/7 care. They are currently proposing that they lessen my daily supports funding by stating that I don ’t require 24/7 care. My CPTSD has many triggers which includes being left alone and that is exactly what will end up happening if the NDIS does not provide me with the appropriate funding I need, directly impacting my mental and physical health. When I am in a triggered state my body goes into fight or flight causing by muscles to stiffen, lessening my already limited mobility, affecting my ability to safely transfer in and out of my wheelchair. It reduces my fine motor skills, I can have muscle spasms constantly and become incontinent. My ability to confidently communicate decreases and retaining information is affected. My skin also breaks down often causing rashes and sores, being in my own bed becomes triggering and my sleep patterns are impacted as well as my appetite and capacity to swallow. Regulating my emotions is challenging and I can become fearful of everything and everyone around me. In saying all this, I have many tools and supports these days to keep me in optimal physical and mental health. However, you have a small glimpse into just how extreme the ramifications would be on me and my life if I am not granted the 24/7 funding that I require.

Very early on during my time as a NDIS participant, I gradually began transitioning my care from an agency to independent staff due to a lack of reliability and security. Fast forward to now, all of my care is provided from independent support workers, it has had some great benefits such as freedom of choice in who comes into my home, I can assure that they will be reliable and specifically trained to support my needs. Unfortunately, it also has had some traumatic downsides as it opens me up to neglect and abuse because there’s no regulations - which has happened many times in my experience. For disabled people like myself to feel safe with people who come into our homes and lives, things have to change in this aspect. I’m currently looking at agencies to help provide more safe and adequately trained staff.

I know I’m not the only person in a situation like this, staff working with other NDIS participants talk about how they are also struggling to get the funding they need to have access to the level of care that they require. I have friends in similar positions too. I understand and appreciate why the NDIS have new regulations in place but they seem to be potentially targeting the wrong people or areas when trying to make adjustments to funding. It leaves vulnerable people like myself without the care and funding that we need to live to our fullest potentials. I want to reiterate that I am grateful for the NDIS, I wouldn’t be the person that I am today without it.

I appreciate your time listening to me today as I help spread awareness on the experiences myself and many others have faced while being participants of the NDIS.

LORETTA

I work as a first nations Disability Advocate across Shepparton and regional towns in the Goulburn valley.

NDIS participants –

I’m finding there is not enough Aboriginal support workers in Community, as many people have workers from other cultures and they either they cannot understand their English, or they do not feel comfortable.
Having continuous different workers providing support at home due to agencies not being able to retain workers
Not enough information about NDIS plans to ensure that participants understand them
Isolation for many participants in regional areas is caused by lack of one-on- one support
Lack of Mental Health practitioners especially around Acquired and Traumatic Brain Injury needing assessments for reviews
Lack of disability housing options especially for mental health participants with mood disorders etc having to live in a shared home environment

NDIS applications –

Assessments especially for Mental health is far too expensive, people cannot afford professional specialist comprehensive assessments for NDIS applications
More LACs needed, for example to give people the time to go through what they are needing for application. Support coordinators and LAC are time poor or not wanting to spend to with people to help them understand
Lack of understanding about NDIS in communities; lack of time and resources for workers to able to explain it [same thing with Aged Care packages which are also being brought in and reformed at the same time].
More information about the reasons “Why NDIS do not fund certain Supports because of other mainstream services” this will help people to look at other options to help support them otherwise and not go through the rejections.

Professionals – Doctors and Specialists not putting in the correct information to claim for NDIS either they are time poor or not understanding what information needed

Case – Mental Health TBI disability

This case is about a middle aged Aboriginal man who will be 50 this year who is suffering from A Traumatic Brain Injury. He resides with his mother who is suffering from burn out herself and with her own health declining she is extremely anxious about her son’s future. So far there has been 3 failed attempts for him to receive SIL or STAC funding in his NDIS package. There is not enough understanding of Mental health needs in NDIA to approve support in packages its more based on physical disabilities and its funding. This is especially around housing for Mental Health disability including ABI and TBI where some cannot be put in one house and be made live together with brain disorders.

There is not enough housing options for people with mental health disabilities to live in their own space (a bedroom is not enough for an independent life) but be part of a community.

CRISTIE

I work across regional towns in central and north western Victoria, including Bendigo, Swan Hill and Mildura, providing access and support assistance to people attempting to access the NDIS, or who are NDIS participants, but struggling to make the system work for them.
Potential NDIS participants – support systems create barriers and fail to support relevant assessments

I have found that within the area that we cover, many people who should be NDIS participants struggle to gather the information needed to meet the Scheme’s minimum requirements, and things that are meant to be supports, such as Local Area Coordinators (LACs) often become barriers instead. LAC’s are too often:

Acting as gatekeepers and effectively denying NDIS applications prior to assessment
Failing to make much or any contact with potential participants to speak with them about their application or community connections or develop an understanding of their circumstances.
Picking and choosing conditions for NDIS recognition and acting paternalistically towards clients about what is ‘best’ for them while being too inflexible to meet with them to make a first hand assessment.

In one case, an LAC declined a client participation in the Scheme in connection with the disability that denies them mobility, but encouraged her to apply in relation to her mental health. This client is unable to leave her home which has led to a significant decline in her mental health and by providing support to be able to engage with community, the client’s mental health could improve, so the LAC’s approach showed a lack of understanding about the client’s disabilities and the kinds of support that would be of most benefit to them. This client has been rejected 3 times and is currently awaiting a review.

Assessments and supports are inaccessible

In many regional and remote areas, there are just not enough organisations and/or staff to support clients to complete assessments in a timely manner, or provide other supports such as information gathering, or services that are meant to be part of their Plan.
Medical evidence ( GP and Specialist ) – GPs and Specialist clinics are not trained or informed about how to provide required documentation and

supporting evidence, and their capacity/availability to assist is limited, even while the NDIS places great weight on the provision of ‘medical evidence’ in highly specific formats.

Supporting the cost of required assessments – clients are having to cover part, or all of the often significant costs associated with obtaining assessments, which effectively delays or denies them the capacity to complete assessments. This is on top of extensive travel being required to access an assessment process.

One of our clients has a complex range of physical, psychosocial and neurological impairments. This client completed an assessment in late December 2023, when she paid $2,000.00 for an assessment report critical for her gaining access to the NDIS. She is still awaiting a copy of the report in October 2024.

A number of clients live in areas where there is a 40 minute plus drive to get to their nearest facilities. One client has been informed that if they were to be successful in their NDIS application the closest service provider for the care they need would require a round trip for the provider of 7 hours and 14 minutes to attend to them. This means the time and travel costs would largely account for the Plan funding, before he even gets the support he requires in the home. This client needs the support but believes that this timeframe is ridiculous, and he has declined his original assessment with RIAC to apply for NDIS.

ANNA

The issues we routinely see with participants living in regional and remote areas stem from the lack of services available to clients, which severely affects their ability to have choice and control over the services they engage with. Some clients describe having only 1 or 2 providers to choose from – and if both of these are trialled unsuccessfully, the participant is left with no practical options within a reasonable distance from their home.
Another issue which can arise due to the limited options available to participants is the potential for conflicts of interest to develop. This can manifest in the shape of one provider managing multiple participant supports, creating the potential for a situation of abuse and control, where participants do not feel that they can speak out if they are not happy with an aspect of their care out of fear of jeopardising their other supports.

We have also seen other examples of direct conflicts, such as in a remote town where a support coordinator was also the participant’s landlord, which created significant issues when a tenancy dispute occurred. In another case, a legal guardian of a participant was also their support coordinator and manager of support services. The potential for conflicts to arise is magnified in regional and remote towns where options and alternatives for the provision of services are either extremely limited, or do not exist.

Participants living in regional and remote areas are generally already living with disproportionate levels of psychosocial disabilities compared to those living in metropolitan regions. The lack of available services, particularly for mental health supports, is leading to participants feeling further isolated, which in turn exacerbates the conditions experienced by this cohort.
The lack of medical and allied health practitioners available in regional and remote areas leaves this population of participants at a severe disadvantage. The excessive distances they need to travel, in conjunction with the time spent in these marathon commutes means that participants, who already live with the extreme challenges caused by their physical and/or mental health issues, are left struggling to gather the medical evidence they need year after year to prove their eligibility for the scheme. Some participants report staggering travel times of up to 8 hours to see their treating doctor.

Case study 1 – Gregor – see below, in his own words.
Case study 2 – A 14 year old male participant living in a regional coastal town in the Barwon South West region of Victoria. This young person lives with Autism, severe anxiety and displays significant behavioural challenges. As such, his behaviour support plan included restrictive practices.

Despite the participant’s paediatrician being supportive of the treatment being used, the Agency changed the participant’s plan structure from self-managed to Agency managed due to their concerns about the chemical restraints being used. This change meant that the participant could now only use registered providers for provision of his supports. This had the effect of disqualifying many of his supports, and giving him few or no options to replace them due to his regional location. This had a devastating impact on the participant, as the supports he desperately needed were effectively removed by the Agency; his already severe anxiety worsened, and his behaviours became more challenging.

At this point RIAC advocates got involved and helped put together the evidence required to have his plan reverted back to being self-managed. This allowed him the continuity of care he needed, with his trusted and established support network, but the issue highlights the complexity of Agency interventions around restrictive practices for participants in regional locations Participants being required to use registered providers when there are restrictive practices being used can have detrimental impacts in regional and remote areas, where the availability of such providers is extremely limited.

For participants such as the young person in this case, with multiple disabilities and very complex and challenging behaviours who are very sensitive to change, this can have really dire consequences, putting both their health and wellbeing at risk.

Client lives 2 hours away in a remote location and doesn’t have technology such as a mobile phone or computer. Even if they did have the hardware, reception in the area has been reported to be extremely poor.

Client also does not have good mobility or easy access to transport.

For an advocate to organise written consent simply to act for the client requires significant travel (4 hour round trip). The NDIA is very resistant to accepting verbal consents and this hampers client access to timely advocacy in cases like this.

Gregor’s Story

My name is Gregor . I am 47 years old, I am passionate about human rights and equality for all. I am a person with multiple disabilities, including spina bifida, left leg below knee amputation and mental ill health. I have lived in many places throughout Australia, including Gold Coast, Canberra, Melbourne and now Ouyen, a town of approximately 1000 people in rural Victoria. I’m an NDIS participant, and have a unique work history in that I have worked previously as a disability advocate, a support coordinator and also subsequently as a Senior Local Area Coordinator for the NDIS. I want to start my own business using 3D printing. At present the compounding impacts of my disability combined with my experiences and lack of support have been significant.

Having lost everything financially during COVID lockdowns, and becoming homelessness – I moved to Ouyen as it was the only place that was financially viable for me to find a house to live in on the private rental market.

My last NDIS plan was created whilst I was homeless. I applied for a change of circumstance review in June 2024, however nearly five months later, the NDIS is still processing that review. The NDIA has not communicated sufficiently with me along the way. I have contacted the call centre numerous times, trying to get information, however the frontline staff can’t answer my questions nor have been able to give an ETA. They usually pass on my details to the appropriate team, however those teams rarely respond. The only response is that they are sorry, and are way too busy. For me to attend an NDIS office, is an hour drive, each way. It’s been intensely distressing not hearing from the NDIS when the NDIA is meant to be supporting people with disability to live our lives.

Having had an NDIS plan since rollout, the move to a rural area has been a big wake up call re the lack of supports, and the impact that this has for my life. My town has no taxis. My town has no Ubers. The only public transport is 2 Vline buses a day. Whilst there are some allied health staff in Ouyen, in my experience, they are generally not prepared to work with NDIS participants (as their focus is on providing aged care supports). There is not enough incentive for them to also want to engage with NDIS systems and work with NDIS participants. I have ended up needing to engage with allied health staff in Mildura (100KMs away). I have also tried to find local support workers, including cleaners, but have had inordinate difficulties, as despite being

someone who is resourceful, creative and connected – I have found very few people willing to work as support workers here. Most have to come from Mildura, which is 100KM (about an hour away) – and for which provider travel costs apply. It ends up in effect costing me approximately $160 for each direction that they have to travel (NDIS rates stipulated are $1 a km plus time (hourly rate for support)), or for allied health staff, this can be approximately $290 for each direction they have to travel. All the GPs working for Community health in Ouyen are short term locums (I believe it is three week cycles). I have complex health/disability/personal circumstances, and need to see a consistent GP. I have to travel 100KM each way to see the GP (or when appropriate, do telehealth). There is a prosthetist that comes to Mildura once a month, but for anything urgent I need to go to Melbourne. I also need other types of specialist medical assistance, that I have to try and access in Melbourne or Sydney or further afield. There is a lack of mental health services here, and it is also very difficult to find people with the right expertise willing to offer mental health supports via telehealth.

I can’t use public transport due to the impacts of my disability. I drive my own vehicle but I cannot access mobility allowance from Centrelink, as I am an NDIS participant, and NDIS participants at present . My current NDIS plan (the one prepared when I was homeless) - for the first time ever does not include any transport funding, despite me now, since May, living in a rural/regional area. It isn’t fair that because I am an NDIS participant, I can’t get the mobility allowance – whilst also not receiving anything commensurate from the NDIS.

I am currently on the Disability Support Pension. There are very few jobs available in Ouyen. I found work, but it required me to travel 100km each way to a town called Sea Lake – I eventually had to resign, as the cost of travel became too prohibitive (I was paying to have a job, rather than being paid).

The outcomes I hope for from this inquiry are:

A commitment to a new NDIS Rural, Remote and Regional Strategy. This strategy would need to be co-designed with people with disability, living in rural, remote and regional areas throughout Australia, explicitly including areas like Ouyen in Victoria.
Increased NDIS action on thin market issues in rural/regional areas including areas such as Ouyen in Victoria.
Direct avenues for proactive, and direct communication with senior NDIS delegates, as needed.
NDIS delegates receive better training on how to create suitable and equitable NDIS plans for people with disability living in rural, regional and remote areas.

Ensure there is equality in outcomes for NDIS participants regardless of whether they live in a city, or in regional/rural/remote areas, by ensuring that the impacts of rural/regional/remote life including distance are considered and responded to.

Additionally I recommend –

I think that, as per the Centrelink model, there should also be an active regular roaming outreach offices of the NDIA (not LAC as I am now unsure what their role is), that takes it in turn to visit all the rural, regional and remote areas across each state/territory with a view to taking proactive steps to improve the participant experience. There should also be senior staff present who are able to take active steps to resolve issues occurring for participants.

My experience of being an NDIS participant in a rural area: the NDIS has been uncontactable, unresponsive, inconsistent and ineffective. There are also limited to no supports without having to travel considerable distances.