37 Purry Burry Avenue, Primbee NSW 2502
ABN: 44 626 045 798 NDIS Registration ID: 4-3LYZ-131
Submission on - NDIS participant experience in rural, regional, and remote Australia.
Having worked in the Disability Sector for over 30 years, we feel we can give a good indication of the effectiveness of the NDIS and the impact it has on persons with a Disability, their families and support providers. The NDIS was promoted as something that would give all participants more choice in their services and how they were provided. Unfortunately, there were hidden expressions such as “Reasonable and Necessary” that were not promoted until the NDIS came into effect. These words have changed the face of the scheme completely and to the detriment of all it is meant to service.
a. the experience of applicants and participants at all stages of the NDIS, including application, plan design and implementation, and plan reviews.
As a Registered Service Provider, we have been involved in assisting NDIS participants and their families in all stages of the NDIS process.
- Application – this is an important part of the NDIS. The application asks the person with a disability, their families and other relevant stakeholders (Occupational Therapists, Speech Therapists etc) to identify all areas of support required to ensure the person with a disability receives the correct funding for support. This is where the scheme begins to fail the person with a disability. The people who look at the application (Planners) begin to dismiss areas of support required and use the term “Reasonable and Necessary” to justify either cutting the funding required or denying the funding required. It has been our experience to note that the planners often have no experience in the disability sector and therefore have no understanding in the importance of the required supports. It appears their main objective is to reduce the funding required for supports at any cost. A few examples
-
A person with a disability who cannot mobilise unaided and is prone to falls that could potentially be life threatening, was not approved for active overnight support. The person was expected to be in bed at 10pm and not need to leave bed until 6am. When challenged about this the planner suggested collecting data overnight to prove they require it. This data is meant to be collected by someone who is only funded to sleep during those hours and not assist the participant. The participant is then also placed at a high risk of falling if they attempt to get out of bed unassisted. Sleeping staff won’t know until it’s too late (definite fall unsupported)
-
A person with a disability who exhibits quite extreme challenging behaviour overnight was not approved for active overnight support. Again, the provider was asked to have data to prove that staff are required to be awake for longer than a two-hour period. Data was provided in an abundance, showing that without active support, the participant would be.
- disturbing other residents at their home (one being the above participant), placing them at risk of being assaulted physically if the participant was upset or angry. Page 1 of 4
ABN: 44 626 045 798 NDIS Registration ID: 4-3LYZ-131
-
they would be at risk of choking having access to food items they cannot eat without assistance,
-
they would have the ability to abscond having no one there to prevent that occurring.
-
due to being indecently abused by carers in the past, would be at significant risk without supervision.
The participant woke at all different times of the night and due to the provider having active support, was easily redirected back to sleep or to sit quietly and calmy so not to disturb others at the home (other occasions the participant has engaged in property damage placing them at risk) Funding was denied on multiple occasions as it was not deemed “Reasonable and Necessary”. I have to mention the participant has other medical conditions such as epilepsy and sleep apnea, neither of which are considered when looking at support for the person. Prior to the NDIS, all supported accommodation facilities had an active overnight support as a requirement with any person having epliepsy.
- A planner listened to all information required for a participant that enabled them to keep the same level of support they had prior to the NDIS scheme coming into effect.
They appeared to be acknowledging all stakeholder’s input and requests. The family had asked for funding to have a support coordinator and they requested a 1-year plan due to not being happy with the previous 2-year plan that ran out of funding. The planner then went away to develop the plan cutting most of what was required to support the person. They were not given funding for a Support Coordinator and the underfunded plan was given over a 3-year period. When trying to discuss the inadequate funding with the planners you are advised to wait until the funding begins to run out and put a change of circumstances in. This is not as easy as it sounds and can leave participants with no funding or supports, which does not appear to concern the NDIA.
These examples are not uncommon. Approx. 80-85% of NDIS participants are facing the same problem. The plans are not person centred, the people who know the participants well and the professionals who are qualified to make recommendations around the supports required are not being listened to.
The last example we will mention here is beyond doubt the worst.
Plan designs and reviews.
We were approached to provide emergency accommodation (STA) to a 21-year-old, indigenous male NDIS participant. The participant was being subjected to Domestic violence in the home and was at significant risk. The participant required 24 hr support, has level three Autism and the intellectual capability of a small child. After being placed with us, his Support Coordinator made an application for him to be housed in a SIL home. This application was made within three months of this occurring. The application was rejected and public housing with drop-in support was recommended by planners. The application outlined the fact the participant did not have any skills required to live independently yet they were ignored. An Occupational Therapist completed and submitted a functional capacity assessment stating that this Participant required 24hr support. The assessment described significant risk factors if not
Page 2 of 4
ABN: 44 626 045 798 NDIS Registration ID: 4-3LYZ-131
supported correctly. At this stage, the participant had exhausted all funding available to him, so the SIL application being approved was vital for supports to continue. The application was again denied. Supports continued with the participant, as we felt we had a duty of care to ensure his safety while battling the poor decision handed down by the NDIA planners. He had an opportunity to move into one of our SIL homes that was perfect for meeting all his needs. We did not want him to miss the opportunity while we challenged the decision with yet another review. We had also continued to invoice the STA costs due to believing this would place some urgency on the review with monies owed accumulating quickly. This is something we did state we were happy to change to SIL costs once the NDIA accepted that the care needs were necessary as stated by all professional services involved.
We made an application to have the invoices paid. The NDIA denied the payments stating that “STA” was not in the person’s plan. That was correct, the participant lived at home when the plan was developed, and community participation was all that was required at that time. NDIS plans do not provide the opportunity to add unforeseeable funding for domestic violence. This was an emergency situation that was supported by the Ageing/Disability Commission.
b) participants’ choice and control over NDIS services and supports including the availability, accessibility, cost and durability of those services.
We now had two battles on our hands, 1. To obtain the correct funding to support the person in a 24hr care facility 2. Obtain payment for supports already provided. Complaints were made to the NDIS commission, NSW Ombudsman, the Honourable Bill Shortens office and to the Prime Minister, Anthony Albanese’s office. Once complaints were made, the Participant was given a new planning meeting date. There was limited time to prepare for the meeting, it was a matter of days. The meeting was held over the phone with a young sounding NDIA planner. The planner was extremely abrupt, cutting myself and the Support Coordinator off when speaking. When explaining two supports the Participant required, we were advised we could only ask for one and couldn’t have both. This is something we found to be untrue following the meeting. At no time did the planner ask the Participant about his living arrangements or supports he was currently obtaining. The goals discussed were old and, in most cases, unachievable. We received the plan a few days later. One surprising element of the plan was the first identified goal. The goal was as follows; “I will look for suitable accommodation options” this was never raised or discussed with the participant and clearly the planner’s own goal. She hadn’t taken into consideration the actual supports required for the participant or the Convention on the Rights of Persons with Disabilities clause below.
“a) Persons with disabilities have the opportunity to choose their place of residence and where and with whom they live on an equal basis with others and are not obliged to live in a particular living arrangement.”
This action goes against the objective of the NDIS to have people with disabilities control /choose their own path and support options. The Support Coordinator worked tirelessly to have further assessments conducted with relevant specialists (Occupational Therapist, Psychologists etc). We continued to make complaints regarding payments and all efforts were answered with the same generated responses “the support wasn’t in the Participants plan” “the NDIA were not ignoring the professional assessments; they were following NDIS guidelines”. In addition, at no time did the NDIA Page 3 of 4
ABN: 44 626 045 798 NDIS Registration ID: 4-3LYZ-131
advise us not to care for the participant. We believe they were taking advantage of the participant gaining support and happy that it was not costing them money.
There have now been two separate Functional Capacity assessments submitted by two Occupational Therapists, a report from a Psychologist and Behaviour practitioner. The participant was given a Complex care planner for the next meeting which was conducted in November 2023. There were funds made available in December 2023, that we could access while awaiting the plan review outcome. We claimed the SIL costs we projected to suit the care required weekly from this amount.
This whole process has been ongoing since approx. February 2022. The last correspondence received from the NDIA on the 12th of February 2024, stated that they would no longer respond to the complaints made about outstanding payments and that we could take it up with the NDIS commission or the ACCC. On the 16th of February 2024, we received a copy of the Participants new plan. The plan finally acknowledged the actual needs of the participant and included SIL funding. The reasoning for the SIL being approved was the evidence from all Professionals mentioned previously. The evidence was the same provided in February 2022 that kept being denied. We now have to fight for what should have been available over the past two years “payment for needed services provided”.
One significant point that needs to be made, is that this situation could have placed the participant at considerable risk if he was supported by another provider. I have had conversations with participants and their families, where they have explained that providers have ceased services once the funding ran out. It’s like they assist the participant to swim the length of a pool and halfway across the funding runs out and they leave the participant unsupported in the water? The only thing that occurs from that is the participant sinks and drowns.
We understand from the business perspective, it’s not in their best interest to provide services without being paid. This whole process has taken a toll on our company financially due to paying staff to support the participant, paying tax on an income we didn’t receive etc. however we believe as a provider of services to vulnerable people, we have an obligation to ensure the duty of care to the participant is paramount. Providers and Participants should never be placed in this position.
c) the particular experience of Aboriginal and Torres Strait Islander participants, participants from culturally and linguistically diverse backgrounds, and participants from low socio economic backgrounds, with the NDIS; and d). any other related matters
We feel the NDIA planners had zero consideration of the participants indigenous heritage or low socio-economic background. Considering the risk to the participant in the family home with Domestic violence and neglect. The planners were willing to take a gamble when not funding support as he could have ended up being returned to that environment.
We hear a lot about fraud and monies being misappropriated within the NDIS. This is sad and surprising as we do not understand how these people obtain money not required for participants when we cannot obtain payment for legally required supports. Creating a Taskforce to look into the fraud is yet another cost to the scheme. We feel this will be yet another cost that is then recouped by planners when they begin to cut the much-needed services in participants plans.
Brenda Devine – Martyn Vidamour Directors - Serendipity Support Services
Page 4 of 4