The development, modelling, reasons and justifications

for the introduction of independent assessments into the NDIS;

• The reasons and justifications for the introduction of independent assessments are highly inadequate, rather, it appears to be a blatant attempt to cut plans in order to reduce costs, risking lives, and compromising on quality of life for people with disabilities. In my opinion, independent assessments should be available only on an opt-in basis for individuals initially applying to the scheme, in case of not being able to afford necessary private assessments.

• However, for those already on the NDIS, or not wishing to opt in for their initial NDIS application, there is no justification adequate to permit substituting or even considering the advice of one health professional in a once off appointment as opposed to the expertise of a team of health professionals who have worked with an individual for years. The proposal of this scheme highlights a lack of understanding of disabled people and their needs. As a result, it is grossly inadequate. Vital points will be missed, plans will be cut, and as a result, quality of care will suffer. This will be to the extent that people end up in hospital or even die.

• Removing people from the scheme to save money after they have a confirmed permanent disability is also highly unethical, and stands in opposition to the reasons why the NDIS was established in the first place.

The impact of similar policies in other jurisdictions and in the provision of other government services;

• While I understand Centerlink has a similar process, Centrelink largely aims to assess less complex categories, such as ability to work, and financial need. It also does this with a great deal of consultation with a person’s professionals. Additionally, Centerlink works largely on a threshold basis. One example of this is once a person has reached a certain threshold, they’re only able to work 8hrs or less. This frees Centerlink assessors from having to determine the exact nature of the need or extent of a condition -

Once one has met the threshold, they’ve met it, and all additional factors can be disregarded.

In contrast, as NDS is attempting to assess a person’s life and disabilities as a whole, a team of professionals may have to work with someone for a year or more, in consultation with each other, before they get an accurate picture of what the person’s life is really like, and what supports are required. This process involves a number of complex aspects, such as long term observation, follow up, incorporating reports from other professionals, self report from the participant, and data collection from a number of other domains. This is especially important as many people with disability struggle with being aware of, and communicating their needs. Therefore, patterns that are critical to understand may only become apparent through long term observation for months, or even years. Professionals working with an individual over a long term period are also able to more accurately assess the course and nature of a disability. For example, my neurological condition is progressive. My professionals have a good grasp on how rapidly it is progressing, however this would be impossible to accurately grasp in a short term assessment setting, even if I were to describe it well. As a result of all these factors, in contrast to centrelink assessments, something as complex as NDS funding must take every factor into account, and rely on people’s regular professionals, not independent assessments.

The human and financial resources needed to effectively implement independent assessments

Hiring one professional short term, or even a few, to make a final decision may be cheaper than a number of complex assessments over the longer term. However, this decision is cheaper because it is reached more quickly, with less information, and by someone with less expertise than a trained specialist team working together. Ultimately resulting in a poorer quality, inaccurate assessment, that will not be assessing people’s true needs. This is dangerous.

The amount of challenges the NDIS will receive to independent assessments will financially undercut the benefit of introducing them in the first place. I know personally I will be taking the NDIS to court if they move forward on independent assessments, because my disability needs are too complex to be assessed via this means.

The independence, qualifications, training, expertise and quality assurance of assessors;

While these assessors are called independent, they are ultimately funded by the government/NDIS. Such a contract would be an enviable opportunity for any agency - ensuring ongoing, stable work, in significant quantities. As a result, agencies will be highly motivated to obtain and retain the contract. Perhaps the easiest way to achieve this is to save the NDIS more money than any other agency that might contend to be an independent assessor. As a result, the ‘independent’ agency contracted is highly motivated to cut plan costs. This is a substantial threat to the independence of the assessments.

Regardless of the training, qualifications and expertise of the independent assessors, no assessor is able to make an adequate assessment of disability over the course of several hours, or even a day. This is especially the case for complex disabilities, or for a person who has multiple disabilities. For example, with my occupational therapist, it took her a year to fully assess my needs in order to put it together in a report for the NDIS.

The appropriateness of the assessment tools selected for use in independent assessments to determine plan funding;

No tool is adequate to accurately and comprehensively assess the needs of NDIS participants, unless the assessment takes place over a significant period of time, and is administered by the multi disciplinary specialist team who regularly works with the individual.

This long term process is critical for a number of reasons. First, due to the nature of the communication barriers associated with many disabilities, as argued previously. Second, it is critical to observe long term patterns of behaviour, in order to pick up on any barriers that may only become apparent through time and experience with the individual. Expecting people to be aware of and able to articulate all necessary factors is impossible, especially within a short space of time. Standardised assessments with unfamiliar professionals will lead to underfunded plans which will create a tidal wave of costly hospitalisations from neglect and underfunding.

The implications of independent assessments for access to and eligibility for the NDIS

In my opinion, independent assessments should be available only on an opt-in basis for individuals initially applying to the scheme, in case of not being able to afford necessary private assessments.

The implications of independent assessments for NDIS planning, including decisions related to funding reasonable and necessary supports;

My mental health cannot sustain re-justifying and re-explaining my disability again, even one more time. Especially under the threat of having the supports that I require to live removed. It is humiliating. It is dehumanising. I personally have experienced having an underfunded plan, and ended up in hospital for almost half a month as a result. Rather than funding the supports I needed to live, the NDIS chose to make me fight and grovel for them, and I lost. And as a result, I ended up in hospital, re-learning how to walk at the age of 24. If they had of simply funded the supports I needed in the first place, this would have never have occurred.

Under these new assessments, I have to beg a stranger in a 2hr meeting for the right to care every single year. I have to beg for the right to have enough support that I can have washed hair. Leave my bed. Leave my house. And then I have to sit back, and hope they make the right decision. Hope I didn’t forget anything. Hope they’re qualified

• enough to even understand my rare neurological condition.

Because they don’t even know me, and if they mess it up, I have to suffer for a whole 12 months before I begin begging all over again. This is unlikely, as even most gps don’t understand rare conditions fully - everything is based on specialist recommendations, which the ndis are trying to opt out.

When the NDIS decides that quality of life is too expensive, this is what happens.

So this is what I beg of you, dear reader, put a stop to this. Trust my qualified team of professionals with my life, and with deciding what supports I need, as I do.

Eligibility should also never be reassessed in this way. Upon joining the scheme it is determined that someone’s disability is significant and permanent. What else is there to determine?

The circumstances in which a person may not be required to complete an independent assessment & the appropriateness of independent assessments for particular cohorts of people with disability, including Aboriginal and Torres Strait Islander peoples, people from regional, rural and remote areas, and people from culturally and linguistically diverse backgrounds;

• Independent assessments are inappropriate for a wide variety of reasons, as outlined in this submission. However they are especially inappropriate for the following cohorts

  • people with complex needs, including those with multiple diagnoses

    • people with rare conditions, who’s needs are unlikely to be understood by anyone apart from a specialist team

• People with co-occuring mental health and physical disability - this is far too complex for anyone other than a multidisciplinary team

• People with autism, psychosocial or intellectual disability, some of who may struggle with awareness of their needs, and therefore may struggle to articulate them within a short term assessment context like an independent assessment

• People with significant functional impairment, which is often complex in nature and requires a wide variety of different assistive technology and support options

• Individuals who’s conditions rely heavily on observation based assessmentsincludingthoseeg.whoIn Orderstruggleto determinewith awarenesspreviousof plans,their needs, and therefore may struggle to articulate them within a short term assessment context like an independent assessment

The appropriateness of independent assessments for people with particular disability types, including psychosocial disability; and

The process of having to re-explain and re-justify why I need support to live is humiliating, dehumanising and psychologically devastating. I shouldn’t have to beg for enough support to have washed hair. I shouldn’t have to beg for enough physical therapy to be able to continue sitting up. Yet, every year, I, a 24 year old woman with my whole life ahead of me, enters the NDIS meeting terrified that I will not receive the funding I need to live a quality life. Each meeting, the NDIS decides whether I will have the support and assistive technology that I need in order to continue leaving my house. Seeing my friends. Going to university. Things that would all be impossible without this funding.

Upon receiving an underfunded plan previously, I ended up hospitalised for half a month, and almost ended up in a nursing home for the rest of my life, because I didn’t have the support I needed. These are the consequences of underfounding plans.

Please, let my long term, specialist team be the ones who put forward their recommendations for my care. Because with disability it’s so important you have people who know someone and their disability well enough to make the right call.

I’m a testimony to that.

And make no mistake, this is what this inquiry is about - whether thousands of people, just like me, will get to continue living with dignity, able to be a part of and contribute to the community or whether we backslide to the old models, wasting all the positive reforms and funding that was used to establish the NDIS in the first place.