Summary of key points: NDIA processes, practices, community engagement and information distribution have not been inclusive of Deafblind people. Thin markets of support are severely limiting the efficacy of the NDIS and associated strategies and policies. There is a distinct lack of Deafblind awareness among NDIA staff and partners in community. Deafblind people feel they are viewed as walking cash machines by providers. Staff in regional areas experience pressure to cover the gaps left by thin markets of support. Lack of awareness among NDIA and partner staff combined with thin markets of in-person support (CommGuides and interpreters) puts Deafblind people in regional areas at increased risk of experiencing violence, abuse, neglect and exploitation.
The following information is compiled from submissions to the Disability Royal Commission and the NDIS Review.
Deafblindness is a unique and isolating sensory disability resulting from the combination of both hearing and vision loss or impairment that significantly impacts communication, socialization, mobility and daily living. Deafblindness can result from a plethora of conditions across the lifespan and is frequently degenerative in nature. Deafblind people living in regional areas consistently report being unable to access information, services or the right support to access either. These experiences and the context in which they occur render them increasingly vulnerable to experiencing violence, abuse, neglect and exploitation.
If we assess the situation through the social model of disability we can more clearly see the contributing role played by the context surrounding an individual in the creation and perpetuation of the isolation that underscores their lived experience. The persistence of barriers to access in the face of arduous and self-motivated capacity building activities by individuals further reiterates the reality that addressing the capacities of an individual only addresses half of the relationship that can be said to be at play in the emergence of a barrier or disabling experience.
DBA heard stories of Deafblind people in regional areas being left out of NDIS preparation activities prior to the roll out of the scheme. Struggling to understand the system coupled
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with widespread ignorance about deafblindness among staff at the NDIA and their community partners has ongoing impacts for safety as well as mental and physical wellbeing.
“This is very frustrating. It is an entirely stressful experience for all of us, with ongoing drama from the planner that does not look after our best interests. We are not being treated fairly, never shown enough respect. We feel undervalued.”
The experience of being left out of the conversation about the plans that support their lives began for many with the above experience and continues to this day. Changes to plans are frequently made without proper consultation or explanation.
“Now we are appealing our current plans after the planner butchered it all into pieces without warning or consultation directly with us.”
The above issues are compounded for participants due to the lack of clarity around guidelines for deciding what are reasonable and necessary supports related to deafblindness. Plans across the community are so wildly inconsistent that decisions seem to rest on the luck of the draw regarding which planner a person is assigned. One Deafblind community member described to us the difference between planners and the impact it had on their ability to access supportive products essential for their communication, safety and independence:
“In the past, I have had a several glasses pairs funded through the previous provider, it was one of the few good things they did for me. Since I came to this planner, I received only an answer of a no by our planner who never dealt with the previous provider who at least understood the reasoning about the glasses and had them supplied.
I do not qualify for our state’s glasses scheme and they only offer one pair every 2 years, in saying that it is not sufficient because I damage my glasses even with straps on back of my head. I am still very legally blind, I cannot help it. People do not comprehend that my duo sensory losses have a huge impact on everyday living as a normal functioning person that could read and communicate.
I rely heavily on glasses just to make the most of my remaining vision I have left. Demonstrating these important needs, I identify the glasses as a communication tool as did the previous planner, with the aim to read a person signing Auslan and to watch TV with subtitles/ interpreter zoom turned on. To clarify this, the life without glasses and total Deafness, there is no other aids to match the glasses aid for reading these methods as above.
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Reading on paper and devices are a different matter altogether, it requires additional different sorts of magnifier/ contrasting/ light aids. We deserve some dignity in using our remaining vision first.”
Lack of awareness is not just evidenced in the inconsistent rulings of staff currently in the NDIA’s employ. Ignorance of the needs of the Deafblind community in planning and structuring the NDIS is also still impacting community members.
The NDIA planning process does not fit Deafblind realities. Looking ahead to quantify support needs is very difficult not only because of the lack of experience amongst the community in being required to forecast projected need in this way but also due to the regressive nature of many conditions that manifest as deafblindness.
The limited amount of support available also means that many Deafblind people are likely to fill their plans with what they feel they can reasonably expect in the current support environment, rather than an accurate articulation of need or aspiration. The confluence of these factors results in the approval of plans that are often not fit for purpose, insufficient and riddled with gaps. DBA recently heard from a Deafblind individual who’s interpreting allocation was quickly depleted because they were given the same number of hours in a plan that also included Guide Dog training as they were in the previous plan which did not. By not factoring in the additional interpreting hours that would be needed to access the Guide Dog training the individual had their interpreting hours reduced without this being explicitly stated.
“To us, we feel the NDIS is a minefield to navigate, not at all user friendly. We feel it puts disabled people at a huge disadvantage.”
In further commenting on issues with plans/planners DBA was told:
“The planner does not live our lives and should not make decisions to cut back, ignoring our requests. This is a sign of inexperience in understanding our barriers, or maybe they just don’t comprehend the disability we have and how it impacts our lives.”
Whilst the above experiences undeniably impact Deafblind people negatively and create/solidify barriers to inclusion, the lack of availability of appropriate support staff (particularly interpreters and CommGuides) in regional areas has reached a critical point. Not only is the lack of appropriate support severely curtailing the efficacy of initiatives such as the NDIS it is also putting Deafblind people at increased risk of experiencing violence, abuse, neglect and exploitation.
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“It is next to impossible to source a tactile Auslan interpreter in our area, let alone a support worker.
Support workers with Auslan skills are rare as hen’s teeth in our area. If one comes up, that person gets snapped up in working with others full time.”
Numbers are so low in the area referred to above that DBA recently heard from a Deafblind mother who is also caring for children with disability who was asked, in an effort to address the lack of support staff in the area, to consider sharing her supported hours with her child because despite them both being NDIS participants, there are not the staff in the area to service the supported hours included in their plans. That such an obviously inappropriate and unethical solution was suggested in the first place speaks volumes to both the gravity of the situation and the lack of awareness amongst those professionals presently tasked with its management.
A support worker in the same regional area recently informed DBA of a looming crisis in staffing for the region. An interpreting pool of 6 interpreters (2 of whom are proficient in Deafblind interpreting) is set to reduce over the next five years via retirements and relocations to 2 interpreters for the same region (1 of whom is proficient in Deafblind interpreting).
The few individuals who do work as CommGuides in regional areas are also negatively impacted by the stagnation in workforce growth that has accompanied the increase in demand for their services. CommGuides/support workers are not a one stop shop able to provide everything a Deafblind person needs. Specialist supports are still required at times. Increasingly though we are hearing stories of CommGuides being expected to wear a staggering array of professional hats in the absence of other qualified staff to support an individual. For example, knowing Auslan does not automatically mean a person is fit to act as an interpreter. Speaking to DBA about this difference in the context of a support worker that is often called on to interpret because there are no qualified interpreters available, a Deafblind regional resident told us:
“I have invested so much time into teaching her simple Auslan over a couple of years, yet she is not a qualified interpreter, it is not fair to expect this/put that pressure on her. She does not have a qualification to interpret a full session. She can do basics, but cannot do a full hour or more of interpreting work. That could easily become misleading and then the whole thing becomes a dramatic event where we get the wrong information between parties.”
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In addition to reinforcing existing barriers to accessing the community and undermining the effectiveness of NDIS plans, thin markets for support also render Deafblind people more susceptible to exploitation.
A support coordinator working in a regional area offered the following:
“The pocket that I am in, there are no services. So for my people that live rurally I’m getting behaviour support from (redacted) on the border ‘cause that’s all I can get because (redacted) won’t travel the 2 hours up. (Redacted) will travel because they know that they can charge and sometimes I even get charged for a second person because they say that people are doing too much driving. Don’t get me started. But again, I had to explain all of that to a planner the other day saying “Yes I’ve got an OT and a Speechie but they’re coming..” My participant lives in (redacted) and it’s a 2 hour trip. I’m also supporting someone in (redacted) which is a 2 hour trip from me as well but I can’t claim that. I’m still supporting them and we do more of this (talk on ZOOM) but she has a mental health condition which means that she doesn’t like this interface. So there’s a whole array of issues that I just don’t think…….I think they think that the market, as you said, is more robust than what it is. There’s just providers haemorrhaging all over the place you know? There’s OT wait lists that are 12 months long. How are people meant to get the right things they need unless you jump up and down? I’ve known of families to go to Bill Shorten’s office just because that’s how you can get an outcome and that shouldn’t be how it works. But you’re not heard otherwise. So it’s just….I feel it’s broken and I think that there are some things in the old system in terms of the accountability, the level of expertise and understanding and local knowledge and those networks and rapport that you have that went a long way. That’s not there anymore. No one’s invested in getting to know. People aren’t invested in trying to get to know someone.”
They also elaborated on difficulties interfacing with the NDIA in a regional context:
“I know for a fact particularly where I live the NDIS offices are not accessible. That’s number one in terms of they’re too far away. They don’t like you to go there, not that they did, but since COVID you just don’t go into an NDIS office ‘cause half their staff aren’t there. They’re doing their however many days per week in the office. But then you’ve got all the community partner’s offices. My closest office from where I am is about an hour and a half away. So I’ve got people in the community contacting me going “How do I get on the NDIS and how do I start the ball rolling for me because it just seems too hard because I can’t just go somewhere and get it done.” We don’t have a joint Centrelink hub or anything here. We’ve got one person that works in this little neighbourhood house that sort of does some of that role.”
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For some regional Deafblind communities, the lack of local interpreters, let alone any with appropriate skills for working with Deafblind people, leads to heavy reliance on paying for interpreters to travel from the nearest major city. This is often quite economically lucrative for these interpreters and the agencies who provide them as the additional travel costs that can be claimed for these interpreters represents a significant increase to the earning power of these services. Both Deafblind people and professionals in regional areas report feeling that after years of being a neglected afterthought, if registering on the radar of metropolitan providers at all, they are now looked at as walking cash machines by providers who’s conduct is predatory and seems more in-line with supporting the status quo, i.e. under-provision of service, because the thin markets = less competition and greater economic boon without commensurate drive to ensure quality or competitiveness of delivery. One Deafblind resident in such an area described it as:
“We feel that people are making money off us everywhere we turn because we have NDIS funds.”
In instances when the appropriate staff cannot be sourced from surrounding areas, DBA has heard that there is often a huge burden placed on family members to provide formal support for which the NDIA frequently refuses to reimburse. In hearing about an incident where a participant was sent to hospital without appropriate support, DBA was told:
“Juno: So it ended up being her sister that was called. Her sister. She went to the hospital and stayed there for 36hours straight.
Ben: Does her sister often step in to do interpreting or what would be called “formal support”?
Juno: Yep.
Ben: And I’m assuming she’s not renumerated for that?
Juno: Oh god no. So she (sister) was also the other day, and I did tell her not to do it just because I was being a stickler for it, but she was going there the other day to help train the staff around how (redacted) likes her stoma bag changed. I’m like, well, no. They have a duty of care and you know you’re not accredited either so that if anything goes wrong they (staff) will say “Oh well that’s how she told me to do it.” It causes a whole heap of issues and she’s like “but I’m there every day” and now I’m trying to stop that.”
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Lack of appropriate communication support during NDIS set up means plans, policies, procedures, rights and obligations were barely understood by many Deafblind participants in regional areas. DBA heard of a case where multiple participants were having their plans controlled by a professional who had been set up as their nominee. None of the participants requested this and upon discovery had to advocate directly to the agency in order to have the nomination and associated powers overturned.
As well as the potential for entities to exploit the dire situation facing Deafblind people in regional areas, the lack of on the ground staff also leaves people more vulnerable to being exploited at the individual level. One family in a regional area reported experiences of a support worker using the family’s laundry facilities during shifts without their permission. When the mother of the family confronted the worker about this their response speaks volumes to the attitude that helped create this situation in the first place, and that makes it such a fertile ground for violence, abuse, neglect and exploitation:
“If I quit, who are you going to get to support you then?”
As well as leaving Deafblind individuals more vulnerable to being exploited, thin markets for support staff also act as an enabler of neglect causing risks to safety. When a person is gatekeeping the provision of support to a person whose disability they know little to nothing about, decisions around support provision and funding allocation that do not match the reality of a lived experience of deafblindness have the potential to place Deafblind people at increased risk of harm. DBA heard of one such instance when a planner in a regional area rejected applications for an accessible smoke alarm system a total of 4 times in plans for an individual whose family has already experienced the harrowing ordeal of losing their home to a fire.
The dire situation in regional areas outlined to this point is made exponentially worse by the lack of training opportunities available for people in regional communities to gain the skills and knowledge to support Deafblind people. At the time of writing there is no training pathway to become a CommGuide in any regional area of Australia and the same is true for training to become an Auslan interpreter. This reality is brought about by a number of factors, not the least of which is that Auslan courses continue to be not seen as profitable or worthy of prioritizing amongst other course offerings. Whilst this lack of emphasis on Auslan can be justified purely by economic considerations, it also belies the persistent attitude of not prioritizing the welfare of disabled community members to the same degree as we do the welfare of others. DBA heard from support workers in a former regional NDIS trial site who’s one Auslan training course, the one possible avenue by which individuals could start to learn the skills necessary to support the Deafblind community, was closed on the eve of the NDIS trial beginning in
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that area. It is understandable that these developments may not have been on the radar amongst senior managers at the RTO in question, however when they were made aware of the NDIS roll out and the likely increase in demand for this training and the vital role it would play in the lives of Deafblind people in the region, the course was still axed.
The extent and nature of the barriers faced by Deafblind people every day means that their ability to engage with the world around them as informed, empowered citizens rests not only on their personal capacities, but on the capacity of the ecosystem of professionals that supports them. Until there are no streets clogged with traffic to be navigated or language barriers to be overcome when engaging with members of the broader community this reality will remain. Currently, all goals of the NDIS, the ADS and the rights protected under the UNCRPD are kept ostensibly out of reach from most Deafblind people by a desperate lack of appropriate support. Thin markets of support will also severely curtail the effective implementation of recommendations arising from the NDIS Review and Disability Roya Commission.
This lack of support has been allowed to be passed between service providers for whom it never quite fit a portfolio or position statement and has driven Deafblind people between the cracks of service provision where they are unfairly and unceasingly expected to manage in circumstances that do not mirror that of any other communities of people with disability, let alone the mainstream community.
The skill shortage and desperate situation regarding the training landscape is a national skills shortage that exacerbates the already heightened vulnerability of this neglected population. Given the severity of the issue and the widespread and pervasively destructive impacts of its continuance, DBA further contends that until these issues of support training and provision are addressed, all other initiatives aimed at improving the lives of Deafblind people cannot and will not have any lasting efficacy.
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