By Kirra Grimes
THE National Disability Insurance Scheme (NDIS) recently became available in South Gippsland and Bass Coast, and participants are already saying the transition has been far from smooth.
Successive federal governments have excitedly claimed that the NDIS will revolutionise the disability support sector, saying that jobs will be created, the sector will be revived, and that people with a disability will be given choice and control over their lives and be able to direct their care and support needs.
But Leongatha resident Nina Smith says she’s been living a “nightmare” since first being contacted by the National Disability Insurance Agency (NDIA) in July, and has found the entire transition process confusing, stressful and exhausting.
It all started with a phone call from the NDIA, the agency responsible for delivering the NDIS, to discuss Nina’s eligibility for the scheme.
Nina was expecting the call – her case manager at Latrobe Community Health Service had told her it would be coming – but she was not expecting the question that was put to her by the NDIA worker on the other end of the line.
The worker asked Nina if she “really needed” her seeing-eye dog, Walter. Nina has an acquired brain injury, is legally blind and experiences cognitive issues and anxiety. Walter has been Nina’s companion for six and a half years and is an essential support, not only helping her with physical tasks but also providing comfort and security.
“My support worker was with me at the time [of the phone call] and wanted to throw the phone down. We both just thought: I cannot believe you’d ask that question,” Nina says.
Though the NDIA did not take Walter away, Nina experienced a severe anxiety attack after the phone call and was hospitalised for a week.
With the help of her case manager, Nina submitted a formal written complaint about the phone call, via the NDIS website.
As well as triggering extreme anxiety at the prospect of losing Walter, Nina says the NDIA worker on the phone was dismissive of her concerns and used patronising language, such as calling Nina “Love”.
Four months later, Nina has received no response from the NDIA, despite the NDIS website saying they “aim to acknowledge complaints within the next business day from receipt… call [the complainant] within two business days of acknowledgement… [and] resolve complaints within 21 business days of receipt” and despite Nina asking her Local Area Coordinator (LAC) to follow up the complaint a number of times.
Nina says this shows that the NDIA “really don’t care about their participants”.
“It taught me that my voice did not matter, and that I was not respected,” she says.
And Nina says she’s not the only one anxious about the uncertainties of the new scheme and disappointed with the lack of support and clear information available to participants.
She says back in June and July she attended two NDIS information sessions held in Wonthaggi and facilitated by Latrobe Community Health Service.
“The information sessions spurted out all this new language: ‘capacity building’, ‘reasonable and necessary supports’… The confusion, angst and misinformation in the room was palpable,” she says.
“They give you a template to fit your life into and tell you to write your weekly needs.
“I wanted to help people [at the meeting] who couldn’t advocate for themselves. But it was hard enough to help myself.”
The meetings left Nina concerned that people won’t get the support they need because they don’t know what to ask for, or how to ask for it.
Nina says she spent an “enormous” amount of time with medical professionals getting formal letters to justify her needs, and brought these letters along to her planning meeting with her LAC so that there were no questions left to ask.
She says many participants, people with intellectual disabilities for example, aren’t capable of gathering that sort of information to present a good case for what they need, and that although her LAC was very supportive and professional during her planning discussion, “the discussion is typically only 1.5 hours which is nothing if you are someone who has not been able to plan for this session”.
“It is a very unfair system, which cannot possibly draw out wants and needs in 1.5 hours,” she says.
Nina says participants are taking to Facebook groups, such as ‘NDIS Grassroots Discussion,’ to share their concerns.
“There are lots of people complaining bitterly. People have had horrible experiences, and hearing about them all just makes me think the NDIS is actually not the best thing since sliced bread, like the government and the media have been saying,” she says.
In Nina’s experience, the only participants who have positive things to say about the NDIS so far are people who haven’t previously accessed disability services.
“People who’ve been battling alone think the NDIS is a really good thing. They can see the hope and opportunity. They have nothing to lose. But for someone like me, who’s happy in their existing support services environment, the NDIS brings a lot of uncertainty that those vital supports will keep being provided,” she says.
“I’ve heard that even if you get given things [supports] in year one, they can get taken away in year two or three if the NDIA considers you’ve built enough ‘capacity’.
“It leaves me with a very insecure feeling.”
Nina says the government is trying to backtrack on its promises and cut costs associated with the ambitious scheme.
“The government blew the trumpet about how wonderful it was going to be but now they‘ve realised ‘oh hang on, how are we actually going to fund all this?’”
She says the phone call she received shows the NDIA needs to employ more staff, so the workers can spend more time getting to know the needs of individual participants before calling them and asking “totally inappropriate” questions.
“They’ve got such high volumes of participants to get through; it’s been very rushed,” she says.
“It must be stressful for people working on the frontline but I’ve got no sympathy for them because I’ve seen the impact on people with disabilities and what we’re going through is much worse.
“It’s sad that staff are not trained properly and that they have targets they need to meet that are pushing them to the limit. But I think it is sadder that those vulnerable in our society are on the end of this venture and being impacted so profoundly and negatively.”
Nina also has concerns about the scheme itself, particularly its emphasis on ‘capacity building,’ which she says is unhelpful for people like her with conditions that are unlikely to improve, and may push people into doing things they’re not comfortable with.
“I once explained to my NDIS worker that I needed support getting to and from the bus stop on occasions because of my mental illness. She then proudly explained that I should consider getting a scooter.
“That would ‘capacity build’ me and not make me so dependent. Can you imagine a visually impaired person riding a scooter down town? It’s madness. I don’t need to be ‘capacity built’,” Nina says. “I need to be supported!”
Dominic McInerney, a spokesperson for Latrobe Community Health Service (LCHS), which is supporting the rollout of the NDIS in this region, says LCHS has recruited around 40 staff to manage the transition to the scheme in the past few months.
These include support staff, team leaders and Local Area Coordinators (LACs), who provide assistance with the NDIS planning process, and ensuring participants’ plans are implemented effectively.
“The plan is a starting point, and people aren’t dictated to during the planning conversation. It’s about what they [participants] want. A skilled LAC can draw out what a client wants and needs,” he says.
Mr McInerney says there won’t be any more NDIS information sessions in the area but that people can contact LCHS to find out if they’re eligible for the scheme and the next steps to take.
He says LCHS can refer people to other services if they’re found to be ineligible for the NDIS.
After the rollout of the scheme is complete, Mr McInerney says, LCHS will continue to work with the NDIA to see to any outstanding complaints or concerns coming from this region, and will “check in” with local NDIS participants to make sure their plans are meeting their needs.
Mr McInerney was unable to comment on the status of Nina’s complaint.
In responding to Nina’s concerns and queries about why her complaint received no response, the NDIA issued the following statement:
“The NDIA is working hard to bring new participants into the Scheme in a timely and positive manner that ensures participants can achieve the best outcomes.
“Information regarding the NDIS feedback and complaints procedures is available on the NDIS website.
“The development of a plan for a participant involves the exploration of the participant’s goals and aspirations for their future and a detailed discussion designed to enable the NDIA to understand current and future support needs.
“Our objective is to ensure that each and every planning conversation is respectful of the unique circumstances and needs of participants and we apologise for any distress a conversation may have caused.”
Nina recently started a peer support group in Leongatha to help NDIS participants through the “maze” and to provide emotional support for people struggling with the changes to disability services.
The group held its first meeting at Leongatha Community House on October 18 and continues to meet every Wednesday from 10am to noon.
“Confidence to negotiate what I want and how I want it is an expression bandied around the NDIS. However, no-one knows what supports are available to choose from in this area and we are left to navigate unchartered waters ourselves.
“There is no confidence in that,” Nina says.
“I will be truly happy if we participants could find our voice, get confident, be in control, know it is our life, and know who and what will support us in achieving the life we wish to lead.”
Anyone interested in joining the support group should contact Eunice Donovan (Community House Coordinator) on 5662 3962.