NDIA Accountability Project

Challenges accessing support for family members with complex needs in rural Tasmania

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Submission to the Joint Standing Committee on The National Disability Insurance Scheme – Independent Assessments

I am writing to you as a family member with lived experience of the NDIA system. Two family members from one family unit, my daughter, and my grandson, currently have NDIS plans. They live in rural Tasmania.

On one level the NDIS has been a support for a family struggling with day-to-day life, but the support packages and the overall system has been problematic to access. And then it has been exceedingly difficult to find support services that understand their specific support requirements and who have suitably trained staff to supply the support they require so they can participate in their community.

In this submission I will address the following terms of reference:

  • d. the independence, qualifications, training, expertise and quality assurance of assessors;
  • e. the appropriateness of the assessment tools selected for use in independent assessments to determine plan funding;
  • g. the implications of independent assessments for NDIS planning, including decisions related to funding reasonable and necessary supports;
  • k. the appropriateness of independent assessments for people with particular disability types, including psychosocial disability;

Background

My daughter (HJ) and my grandson (RT) have complex needs.

RT presents with ASD, Pathological Demand Avoidance, and severe social anxiety. He is home schooled as no school in his community can provide the required supports. He is generally a happy child within the limitations of his own home, but any social engagement is difficult. With ongoing and intensive support from his Occupational Therapist (funded through the NDIS), his world is opening very, very, slowly. Every step takes massive work and persistent input but his goals are being achieved.

HJ has a complex diagnosis of various psychosocial conditions. Her condition has been exacerbated by the trauma of navigating the NDIS system and advocating for the needs of her son, to the point that her ability to function has suffered to the detriment of herself and her family. The discovery of an Occupational Therapist who specialises in her condition has helped. But finding suitably trained support workers has proved impossible and she is receiving less than half the required (and funded) support. This puts pressure on the whole family. Her husband has had to leave work to become RT’s full time care giver, and HJ now receives a disability support pension. This has put extreme financial stress on the family unit.

Comments

d. the independence, qualifications, training, expertise and quality assurance of assessors;

Every review for the plans of both HJ and RT, have been a fraught process. Their needs are complex. I should not have to say that every participant is an individual with individual needs. I understand that a system such as the NDIA must be built with robust guidelines and protocols for assessment, but at the same time we are dealing with human beings, often those in our community who are the most vulnerable or unable to express themselves fully.

My understanding of the new assessment model is that assessments will be done by trained individuals who may not necessarily be experienced in disability support. The model appears to be based on a generic list of questions and we fear there will be mistakes in understanding the complexity of the needs of participants. For every plan review, HJ and RT have had problems that make us fearful that the new proposal will exacerbate.

For example,

  • during conversations with NDIS planners it has been obvious that they have not read submitted documentation.
  • One NDIS plan reviewer kept referring to HJ by another participant’s name which was similar. He kept mixing up the situations. This was extremely unprofessional and showed a lack of interest in HJ and her son and their needs.
  • Many times, it has taken up to a month or more for a LAC to reply to an email or return a phone call.

If the current NDIS workforce cannot supply appropriate and timely assessments and support for plan implementation, a model that is based on a less personal approach is doomed for failure.

There has been criticism that reports written by professionals may show a bias. I would argue that apart from the actual individuals and their families, who would know them better than the professionals who help plan programmes to increase access to independence in the community? This assessment proposal seems to be an attempt to save money by forcing people out of the system.

Never forget that most conditions covered within the NDIS are not curable. Improvements can be made in social participation, but you will never remove the need for support, and often those improvements occur at a snail’s pace. For RT to leave the house and walk into a shop for even a few moments, may take days of support, preparation and interventions using systems implemented by his OT.

Who will train these assessors and what will be their background? Empathy and humanity are not usually referred to in legislation but must be part of the equation.

For the most recent reviews for RT, we have had to resort to the use of an independent advocate to help us approach the NDIA when a totally inadequate plan was put forward. After this, a reasonable plan was forthcoming along with apologies. I imagine the request for reviews will increase under independent assessments.

The growth of support organisations, advocates and ancillary supports attached to the NDIS system has been phenomenal in recent years. As a close observer, I have noticed that these new organisations are keen and willing, but they are not qualified nor able to supply adequate support. They aim for the easy support packages for their profit, and leave complex participants stranded, 2

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epecially in regional areas. Ultimately, funding is not used because there is no one to supply the service, then the funding is cut. The only person who suffers is the participant, who should be the primary focus of the scheme overall.

I fear that the new position of an independent assessor will be an attractive cherry for these organisations to pick, but will they have the capability and professional skills to provide a fair and reasonable assessment and hence funding?

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

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

What mechanism will there be for review of the assessment decisions? I can foresee the situation where supports are denied as not being reasonable and necessary because of a misinterpreted answer to a simplistic question. It will be frustrating and simply wrong.

Take this as an example -

If you ask RT “can you put your clothes on by yourself”, there will be two contradictory answers, and both will be inaccurate.

His first answer will be no, because he has a processing delay of approximately 10 seconds. So, he always says no at first to any request or comment because of the anxiety resulting from trying to understand and process the question.

If you have the patience to wait (which I doubt would happen in the new proposed assessment model) he would then answer yes with some confidence. This is because he can pull on a pair of pants or slip on some shoes (without shoelaces that he cannot tie at age 11). BUT what the assessor would not know is that RT is extremely sensitive to sensations such as touch and the feeling of clothes on his skin – they ‘burn’. RT needs social stories and visual prompts to know what order to put the clothes on. He also needs to have someone explain the reason why he needs the clothes on at that particular time. This may take many hours of repeated small conversations.

Everything is nuanced and I would suggest that this is true for all participants. Nobody fits in neat boxes.

Other examples of questions that I have seen are confronting and extremely personal. I suggest that many participants will decline to answer, or only half answer, due to the stress caused to them by confronting and personal questions. Having these issues raised in a session with a trusted and consistent professional who can then summarise them in a report is preferable for accurate answers and assessment of suitable goals.

A one size fits all, tick and flick assessment model is guaranteed to fail a majority of those seeking support. And participants will struggle to cut through when they request a review. The NDIS can refer to a piece of paper and say, “but you said xyz”.

The system is fundamentally flawed at the outset.

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

Will there be different assessment forms for different conditions? I imagine not. The assessment process is about assessing functional needs to improve life and community participation, as well as reasonable and necessary supports, leading to the implementation and assessment of goals. This is a reasonable framework but as I mentioned earlier, I am fearful about the lack of individualisation in the process.

To look at HJ at a quick glance you might see someone living a ‘normal life’. You cannot see her disability, but it has had, and continues to have a profound effect on her and her family and their ability to lead a full life participating in their community. Her OT commented that she tends to play down her difficulties, so she is not seen as a burden to those she dearly loves. With appropriate supports she is slowly working towards her goals of independent living. But they are achieved in microscopic increments and amidst setbacks. There are no support workers with appropriate training to assist her within southern Tasmania. I am sure this is the case regionally across Australia.

An assessment by a partly trained, unqualified person from a random organisation will hardly be able to reflect her needs or her achievements.

Proposals

1. Scrap the implementation of assessments by independent assessors. This is outsourcing at its worst and will not benefit the participants. If the NDIA is not set up with the support needs and goals of the participants as its prime objective, then it is simply an obscene cash cow for private service companies and a drain on the purses of Australian taxpayers.
2. Invest in better staff training within the NDIA and other services with an understanding of the participants foremost.
3. Streamline the process of reporting from professionals who work with the participants. Perhaps there are ways that their reports can be made more accessible to those who are deciding on the support packages. It is about good communication, so do not devalue the valuable insights these committed and well-trained professionals bring to the process.
4. Strengthen the current NDIA processes. If budget is an issue and this proposal is aimed at saving money, then look at the service providers and demand efficiencies from them.
5. Implement more stringent requirements on service providers in regional areas and those who service diverse cultural communities. If they promote that they service an area or a cultural sector, then they must show their capacity or lose accreditation to work with the NDIA.

Thank you for the opportunity to make a submission to the inquiry and thank you for your hard work in support of a section of the Australian community that most needs our concern.