National Disability Insurance Scheme (NDIS) participants have found questions in the initiative's new independent assessments to be "intrusive and demeaning" as they raise concerns the process is eroding their choice, their control, and their funding.
The independent assessments were recently introduced by the National Disability Insurance Agency to create a "fairer, simpler and more flexible NDIS". But advocates say participants have come away from their three-to-four-hour interviews feeling disheartened, disempowered, and vulnerable.
"The assumption is that this is yet another parliamentary opportunity to reduce funds from these people and use it elsewhere," Lake Macquarie's Laurel Lambert, whose adult daughter is an NDIS participant, said.
NSW Hunter Valley-based Mrs Lambert said her daughter, Peta - who has an intellectual disability, cerebral palsy, and a hearing problem - left her assessment feeling "really down".
She said participants were asked to give yes/no answers to questions that warranted more explanation and elaboration, and many had also been required to answer queries about whether their disabilities affected or impeded their sex life with "total strangers".
"Where does government come in asking about something that is totally private?" Mrs Lambert said. "They have asked that of many people I know, and everyone I know has been offended by it. For me, they've over-stepped the boundary there."
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The "grossly simplified" questions were of deep concern for participants, who were not sure how their answers would affect the support they receive.
"One of the questions was 'Do you have issues walking on a difficult terrain?' Well who the heck doesn't?," Mrs Lambert said. "Another was 'Can you catch a bus? Yes, or no'. Well what kind of bus? A state bus? Or a bus provided by a disability service provider that picks them up?"
The questions, and answers, were not black and white. There were shades of grey. Yet they influenced what support participants would receive.
Mrs Lambert said historically, the person with a disability was able to lead the process by determining goals they would like to achieve. Now, the assessments determined the funding, and participants' goals and needs were secondary.
"They will just have to sit within the quantum sum of money you have been allocated," Mrs Lambert said. "Almost every question required my daughter to confront her limitations. Essentially the process exposed her to a battery of questions that proved to be an exercise which does nothing to show the value of our community... We were left feeling exhausted, confused, worried, and fearful of what the outcome might bring."
David Belcher, of the Community Disability Alliance Hunter (CDAH), said the new assessment process was a major concern for people with disability who were either already on the NDIS scheme or trying to access it.
"The independent assessment is only about three hours," he said. "What is being asked is that they speak to someone they have never met before, then that person will then form an opinion on their validity for the scheme or their support requirements. Previously, participants were able to use health professionals and GPs that, for many of us, we have had a longstanding relationship with to identify what our support requirements are," he said. "But once this assessment has been made, that's it. The decision is final."
The Federal Member for Shortland, Pat Conroy, said these assessments were betraying and undermining the fundamental principles of the NDIS, which was founded on giving people choice, control and empowerment.
He had been contacted by distressed constituents whose plans had been downgraded and their funding cut after the new assessments.
An NDIA spokesperson said the free independent assessments were "one element" of a program designed to ensure eligible participants could access and use the scheme to build "more flexible plans" with more choice over how they use their NDIS budget.
He said the previous approach relied on individuals seeking their own assessments and collecting evidence of the impact of their disability at their own expense, resulting in those who had the capacity to pay for these receiving more funds in their plans, "on average".
"This provides the agency with consistent information to ensure the plan budget they receive is fair and equitable," he said.
"As part of the assessment, people are asked a set of questions about their interpersonal relationships including dealing with people unknown to them, making and maintaining friendships and sexual activity, in order to understand the level of difficulty a person has in engaging in these activities.
"Personal relationships are an important part of normal daily life, and people with disability have the right to participate in consensual and intimate relationships.
"The NDIA acknowledges the sensitive and personal nature of this topic and people participating in the assessment have the option to not respond to the question.
"Independent assessors are trained health care professionals who understand the need for considered and thoughtful discussions on sensitive and personal topics."