Strive Disability Support Services
DISABILITY $ Phone: 0411 507 174
Provider Number: 4050067547
WE W ORK TO GETttER 8
Inquiry into the NDIS participant experience in rural, regional and remote Australia.
a. the experience of applicants and participants at all stages of the NDIS, including application, plan design and implementation, and plan reviews:
A lot of people live below the Henderson poverty line, price is prohibitive for many people to gain the reports and diagnoses necessary to apply for the NDIS.
Being in rural and remote areas, applicants have to travel to specialists or need to be able to access and understand how to use technology. Even with a travel scheme available in most states for specialist travel, this is also difficult to navigate and often relies on people having the ability to use technology or know what can be reimbursed.
Another prohibitive factor is that people need to pay up front so they can be reimbursed, not everyone can do this, and it leads to delays with diagnoses and support.
Another real issue is with appointments being cancelled at the last minute, often times when people are already in the capital city, this occurs frequently. This leaves people having to go back at a later date, again needing to come up with the funding for travel.
Many people are told to send their receipts, assessments, applications, reports etc, online or via the use of technology. If they’re unsure how to do this, they don’t even have a reliable place for them to go to support them with the process. Most GP clinics in regional and remote areas are constantly overbooked and people are unable to get in to see GP’s let alone have anyone support them effectively with application processes.
In a great many rural and remote areas, they don’t have GP’s, they need to rely on visiting GP’s who only go to their area once per week, sometimes less often.
Extremely long waitlists in all areas are a real concern, especially for skilled and knowledgeable individuals, businesses and organisations.
Accessing the NDIS, is really complex to navigate, documents not being uploaded or saved in the correct location, this means that people believe their application is being progressed, when in fact it hasn’t been processed, they will only find out if they contact the NDIS which means in some cases needing to start the process over again. Many people may not have access to the initial information and application.
Let’s not forget that the NDIS is for people with disabilities, which means they and their families are nearly always in a state of stress and distress, they are constantly having to navigate a myriad of systems and needing to prove how disabled they are. To add the NDIS system on top of that which is highly ineffective
and inefficient at process applications is just another added burden. This is all before we take into
consideration the added complexities of rural and remote people face.
If there was a highly visible organisation in a rural and remote area that does not usually access NDIS funding such as Centrelink/Services Australia or Medicare that could be set up to specifically help people access the NDIS, provider referral pathways and information, submit and send information to assist in the application of NDIS pathways, I believe more people could access the NDIS. A central point of contact where the workers are not included in the process of setting up plans or implementing the plans to reduce any real or perceived conflicts of interest. Purely a place where people can go to get support, information and to have someone to help them follow up when the systems become too much or ineffective. Page 1 of 4
Plan reviews are usually a stress and anxiety inducing time for most participants, especially in rural and remote areas. Most planners who phone are unaware of the availability of services, supports and the vast distances people need to travel for basic supports and services, let alone what kind of work, organisation and funding is needed for someone who has more complex needs. If there are available workers in a region, they are usually overworked and there is no one else to take their place if they are unwell or on leave.
For people in rural and remote areas, relationships are vital to success and implementation.
b. The availability, responsiveness, consistency, and effectiveness of the National Disability Insurance Agency in serving rural, regional and remote participants:
In rural and remote areas there are no LAC’s, very few planners and if there are planners, they are usually overworked and overwhelmed by the volume of work and level of responsibility that falls upon them as they are the only NDIS representative in the region.
A few years ago, planners were provided a ‘case load’ of NDIS participants which meant they got to know the individuals, families, their informal supports, care team and supports. This was very effective, many people I worked with during that time were less stressed, used less funding and they were well supported. Plans would roll over with a quick phone call, as the planner was well aware of what was happening with that individual, and should the plan require any changes it was done quickly with minimal disruptions.
c. Participants’ choice and control over NDIS services and supports including the availability, accessibility, cost and durability of those services:
We agree that all providers need to have a minimum requirement, but enforcing registration for all will reduce the choice of support in rural areas and quite possible support workers may cease providing support altogether. There are many support workers who do not understand NDIS processes, getting started, getting paid etc, and quite often Support Coordinators are teaching providers and support workers how to navigate the system so the individual can receive the type of support they want and need. This is done without using participants funding as Support Coordinators want our participants to have the support they want. We usually negotiate funding, let everyone know how many hours available and what type of support participants want. Oftentimes participants are pressured by providers and support workers to give them more hours or funding. As they are quite fearful or losing support or services they will continue with the support they are receiving or will agree to extra hours or funding, however, as Support Coordinators, we can support participants and their families with any issues and concerns while keeping their relationships intact.
In rural and remote areas, we often rely on a FIFO model of care, especially for allied health providers, this can be inconsistent and unreliable, with travel costs a barrier for participants and providers. Reports and documentation are often provided and asked for, but funding does not meet the needs of the participant, people are then having to then fight for basic care and support to live a normal life.
Limited choice or no choice and control when funding is not in line with needs. For example, being funded for 1:4 SIL when reports and assessments continuously reflect participants needs are at a maximum 1:2 due to significant self-injurious behaviours.
Another issue is the lack of options of SIL providers and the suboptimal care they are providing to NDIS participants. In the last few months as Support Coordinators, we have been able to hold SIL providers to a higher standard of care that they have not been providing over the last few years. We are demanding that they share information with us as we have come across participants that have not received regular check ups which has led to a diminished quality of life. One participant needs to have all their teeth removed as their SIL provider did not take them to regular dental appointments as the participant was fearful of going to the dentist, however, the provider did not attempt to work with any dentists in the area to find ways around the fear. When the Support Coordinator found out that this person would at times eat their own faeces,
presumably due to hunger or pain as they could not eat regular food, then solutions were found as the Support Coordinator worked with a local dentist to find a solution, all of their teeth will need to be removed as their teeth were so rotten, and they were in agony and their quality of life has been reduced permanently because their provider did not take them to regular appointments. This is just one example of so many more in this region alone.
There is one participant who is constantly targeted by one of their other housemates, including being punched in the face, we cannot get them out of their SIL due to funding and a lack of providers in the area. We have been trying to get them out for over 4 years. This person lives in extreme fear every single day and we have to keep telling them that we’re trying to get them out, but nothing ever happens for them as they were placed in a house with 3 other participants prior to the rollout of the NDIS and they are stuck with the 1:4 funding. The only way it was discovered that they are being targeted, punched and threatened is due to the behaviour support practitioner working with the Support Coordinator. If these services are not in place, no one outside of the SIL provider would ever know what is happening for that individual.
d. 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:
Limited or no culturally sensitive supports, the NDIS appears to pay lip service to providing culturally appropriate supports, however, when it comes to adequately funding plans so people can receive culturally appropriate support, they are rarely funded in such a way that supports can be provided.
Many ATSI and CALD participants do not access and use services that are run from offices, over the phone or telehealth. They prefer face to face, in home and in community support settings. Our Support Coordinators are uniquely able to provide this support as we are not in offices, we provide support to people where they are at. We are a non-indigenous service; however, we have a large amount of ATSI participants as people talk with each other and they get to know and trust people who will work with them, upskill them and go to their homes where they are comfortable. We have many referrals from the local Aboriginal health service as they cannot get other services to work effectively with their participants as they work from offices and expect people to go to them if they need anything or require support. This does not work for a majority of ATSI and CALD individuals, workers need to be proactive and touch base regularly. Many times, ATSI and CALD individuals won’t have their phones, or will share phones with other family members so workers will need to go to their homes to check in on them, get them to sign paperwork so they can continue to receive support from providers. In the NDIS world which is all assessments, reports email, phone calls and text messages the majority of vulnerable people who need the most amount of support are not getting it.
e. Any other related matters. With the review, the idea of Navigators was very concerning as it seems as though it’s going backwards to a block funding type model, is saying to people with a disability you had a chance, and we believe you cannot be trusted.
The model of Navigators as discussed in the review appears to look like a generic service for all, returning to a one size fits all approach, service providers deciding were the funding goes, not individuals. Returning the power to organisations not individuals.
People will no longer be seen as unique but a common denominator. Like the current job network that has been proven to not work for the people it is meant to support. People will again be at the mercy of organisations, no continuity of care, and needing to tell their story multiple times which will likely be retraumatising.
Even the best model proposed will not be able to retain the type of workers that are needed for the Navigator role, there will again be high staff turnover as funding will be given back to organisations that will tender, the
organisation with the lowest quote will get the tender and support provided will be based on KPI’s with workers who will work for the least amount of money per hour.
I propose that the states should be made to fund NDIS applications, provide referral pathways, information, submit and explain information to assist in the application of NDIS etc. This would take some of the burden off federal funding and make the states accountable for supporting people with disabilities without removing the integral and individualistic work that Support Coordinators provide.
In rural, regional and remote areas, Support Coordinators are highly independent and are not swayed by managers in other organisations and we hold them accountable every step of the way as our ‘boss’ as such is the participant.
People with disabilities continue to be abused, neglected, discriminated against, they have lower well-being scores and higher trauma and mental health concerns. These are areas that Support Coordinators navigate every day, and we often hold providers to account to address these concerns to provide a better quality of life.
As Bill Shorten stated, “Trusting people to pursue their own futures invariably provides better outcomes. Money goes where it is needed, rather than being absorbed by administration costs.”
Sincerely,
Sarah Baillie.