Submission re NDIA’s plan to provide Independent Assessments

My Service

I am an occupational therapist in a solo private practice. I have significant experience in many areas of disability, but for the last 14 years have worked almost entirely with children who have Autism Spectrum Disorder and their families. I undertook 18 months additional training over 10 years ago to qualify as a Relationship Development Intervention (RDI) Consultant. With this developmental, autism focused training I am very aware of the challenges and strengths that come with Autism Spectrum Disorder, and how important it is for parents to be able to understand the effect of autism on the way the child thinks and operates. I help them regain an emotional connection and guiding relationship with their child and show them how to help their child think for themselves.

Integrated with my occupational therapy knowledge, I coach and support parents of children with ASD to use their daily interactions and routines to promote their child’s social and emotional development. This is an approach that fits well with NDIA’s guidelines as it is a family-centred, strengths-based approach provided in the child’s natural environment that builds the understanding and skills of the people who are already directly involved in the child’s development.

JUSTIFICATION FOR INTRODUCTION OF INDEPENDENT ASSESSMENTS

NDIA have indicated that they are pursuing independent assessments because that was part of the original plan. That is not justification if those who are involved are clearly telling them that this original plan doesn’t match the intention of providing individualised funding and supports tailored to their uniqueness. Providers and participants are saying loudly that independent assessments are not appropriate.

It is simplistic and naïve to think that independent assessments will provide a level playing field for participants. It presumes that providers who know the client are biased. Rather, the NDIA needs to appreciate that we have the participants’ best interests in mind and will be thorough and looking for the best fit of services that will help them reach their potential, taking into account their particular strengths and challenges.

IMPACT OF SIMILAR POLICIES IN OTHER GOVERNMENT SERVICES

NDIA’s proposal reminds me of the government’s insistence on using NAPLAN in schools, the stress it involves for children, the numbers game it has set up for schools, the waste of time practising on tests rather than learning and the faulty significance of the resulting numbers. There is no understanding in these numbers of whether bright children are spending half their time under the desk in defiance, how many parents or schools are tutoring their children to pass the tests, and socioeconomic and other factors. Then schools claim they are better than others because of these numbers. Governments seem to think that numbers provide reliable comparisons for effectiveness and funding. That is not true. It is much more complex and this belief disadvantages many and fosters a false faith.

HUMAN AND FINANCIAL RESOURCES NEEDED

Using Independent Assessors will be more expensive than paying existing providers and much less individualised and equitable. It is also less effective and helpful because there is a shortage of allied health personnel available to provide this service, especially those who have the breadth and depth of experience reliable assessment requires. Knowing how to deliver the mechanics of the assessment is not enough, so reassurances that the new recruits will be trained in this is inconsequential. These assessments are really important to the quality of life of would-be participants in the NDIS, and they need to be done by people who have the experience and understanding to do them well.

INDEPENDENCE, QUALIFICATIONS, TRAINING, EXPERTISE & QUALITY OF ASSESSORS

There is a very small pool of professionals seeking work and very few who will have relevant experience, let alone the extensive experience that is needed for this highly contentious and delicate role.

We also know that unless they have particular personal circumstances, few allied health professionals would want to work just as assessors. Assessment in isolation is not worthwhile or satisfying work, let alone useful to the person assessed. Its purpose is to guide the priorities for therapy and to measure progress. It is part of what we usually do, not an end in itself. And unless we first take into account the person or family’s goals and circumstances and their individual interests and lifestyle, the assessment has little context. Numbers tell so little about any individual.

e. INAPPROPRIATENESS OF THE ASSESSMENT TOOLS TO DETERMINE PLAN FUNDING

NDIA claims that using “a set of standardised and internationally recognised tools … will create a complete picture of how you manage tasks and activities in your everyday life”. That just isn’t true!

It is my experience that when I know the person or parent/carer and use a questionnaire like the ABAS-3 or Vineland-3, there is much better alignment with the instructions on how to complete the questionnaire and with the person’s functional ability. If a parent or teen gives a response that I think may not match the person’s ability, I can refer back to the instructions, probe and get further information. Someone who does not know the person cannot tell if their responses are unrealistic. They do not realise how much help they give or are given, as they are so used to it. These standardised assessments by self-report or parent report can be so variable and subjective.

Someone who does not know the person does not know when it is appropriate to question, and they may also be influenced by time and payment constraints. This is true, too, of any initial assessment. However, once relationships are established, it is a strong argument for having the professionals who are currently working with the person do any assessments. We are also often in a position to check areas of the person’s function in real life and ask teachers and other services if there is uncertainty. And most importantly, we get to know the family.

f.  IMPLICATIONS FOR ACCESS TO AND ELIGIBILITY FOR THE NDIS

It has certainly been an issue that the cost for diagnosis and assessment is daunting and often prohibitive for those who need support. It often causes problematic delay while waiting for a government assessment service, if one is available, and some people miss out because it is just too hard.

An initial assessment that determines funding for years often is not appropriate. At the first assessment, The person is not known and it is just a starter, and we modify goals and get to know the person over time. As the providers and participant get to know each other, there is a better understanding and more effective planning.

Transparency in how the NDIA uses assessment results is an issue even now. We do not know what formulas and criteria they use, let alone how they will interpret these independent assessment scores they would like to use. Already there appears to be a one size fits all approach. We often feel like our reports and recommendations are not heeded and there appears to be a standard amount that is provided to this age group, regardless of circumstances, with occasional exceptions where someone took the time to read the report or we used some magic word, or a particular score, and we have no idea what made the difference. It often seems random and unrelated to the needs explained. There is real danger that with Independent assessments, someone could miss out on the support they need because of 1 point, or an error, and they will not know. They will not have the opportunity to question it, or the process will be too hard and too long.

I do not think providing independent assessments is the answer to give those who are likely to be eligible access to the NDIS. I propose it is more appropriate for NDIA to pay for thorough assessments by professionals chosen by the applicant that include information about the person’s strengths, challenges, goals and interests not just a functional assessment. For children or adults who may have autism spectrum disorder, it is very important that a diagnostic assessment is paid for by the NDIS.

g. IMPLICATIONS FOR PROVIDING REASONABLE AND NECESSARY SUPPORTS

The biggest concern is that participants will be short-changed by Independent Assessments as there will be no real understanding of what they need. It is a “one size fits-all” approach to funding supports for those whose assessment scores are within set ranges. I think it is likely a money-saving endeavour, rather than an improvement for participants. The NDIS already scrimps wherever it can and makes it difficult and exhausting to get a funding review. Most parents just do not have the energy to pursue it, and are daunted even at the stage of trying to speak to someone from the NDIS on the phone or get in touch with their coordinator.

Another of my concerns is that NDIA expects that the Early Intervention Coordinators and Local Area Coordinators will have more of a role in guiding participants in how to use their funding. This is not appropriate due to their limited knowledge of the family and of the range of specialised services there are. They tend to lead families towards large organisations and standard services and have minimal awareness or appreciation for the experience, extra knowledge and individualised attention private services can offer. Often, only families with years of experience obtaining services for their child or family member discover this, whereas if they knew this at the outset, they would have more options and perhaps a better outcome. When going to a large organisation for services, the family has no choice in the person who they will work with. They often do not have much experience and may also be restricted in offering a broader service by the organisation’s policies.

Early Intervention Coordinates and Local Area Coordinators do not know the person well enough to know the scope of their needs and their interests. Guidance is better provided by trusted professionals who already work with the family. Working with coordinators who want to control what supports the family uses creates stress for the family. Even now we sometimes have instances of bossy coordinators who want to control parents’ choices. For example, they tell parents they need to have psychology services rather than RDI (they have no understanding of Relationship Development Intervention), or they will tell them they do not need occupational therapy or speech pathology services. It is particularly difficult for families to know their options and advocate for themselves if English is not their first language, they have limited education or come from a lower socioeconomic background.

h. CIRCUMSTANCES NOT REQUIRING AN INDEPENDENT ASSESSMENT

If your review doesn’t change NDIA’s determination to go ahead with Independent Assessments, it should be a choice and it should be as easy to have an assessment by a professional or professionals of the person’s choice fully paid for by the NDIS instead of an Independent assessment. This assessment should be equally regarded and take into consideration factors other than scores on standardised assessments. If an independent assessment that lasts for years is what suits some participants, then they have that option, and it is not forced on everyone.

I certainly believe that Independent assessments should NOT be required of children and adults who have a psychosocial disability, such as Autism Spectrum Disorder, as their needs are so variable and changeable and should be reviewed more regularly. If they and their providers agree that there is not enough change to warrant an assessment, a brief summary to the NDIS from them should be sufficient for 1 to 2 years, or as agreed with the LAC. Children under 7 need annual reviews and sometimes this involves adjustment to their funding.

I also do not believe it is necessary to have everyone currently eligible for NDIS funding be subjected to an Independent Assessment. That is a waste of money and resources. Perhaps their next review could include a standardised assessment and a more thorough explanation of their circumstances by their providers, if NDIA feel they do not have enough information to confirm the person’s need for support at their current level. It implies that there is a lot of rorting of the system. Since the NDIS started, I have not come across participants doing that in my experience.

i. OPPORTUNITIES TO REVIEW OR CHALLENGE THE OUTCOMES

This needs to be easy and quick as in my experience, many people with disability and their families are feeling worn out and dispirited. Challenging the system when they have been disadvantaged or ignored is just too hard.

j. APPROPRIATENESS FOR RURAL AND REMOTE REGIONS

It is harder to access services in rural and remote regions and it would be hard to attract quality assessors to provide Independent Assessments.

k. INAPPROPRIATENESS FOR PSYCHOSOCIAL DISABILITY

My submission relates particularly to the experience of families who include a child, teen or adult, who has Autism Spectrum Disorder. Autism is poorly understood and there are often low expectations of what the person is capable of that are not founded. They require professionals who can understand their challenges and strengths and who know that they need timely and appropriate supports to reach their potential. This is a specialised and complex area and is not well served by random assessors with limited knowledge and experience.

I am involved in providing families with annual review reports required by the NDIS to support their application for funding. Aware of NDIA’s focus on numbers from standardised assessments, I typically provide scores and a short summary of results from a standardised functional Assessment – the Adaptive Behaviour Assessment System (ABAS-3) which I find is more relevant to Australians than the Vineland -3 that NDIS plans to use.

However, the most important part of my report is about what the child and family are working on together, what their challenges are, what progress has been achieved, and what is relevant for them in the coming year. There may be a new baby coming to the household which is likely to be hard for the child with ASD to accept and understand, or a family move, or another big transition time like starting school or high school. There may be a recent discovery that the child has a significant chronic medical condition, or that he has talents as a rapper or is learning guitar or piano which is boosting his morale and tapping into his potential. Most years bring new opportunities and hazards and these affect what supports need to be funded for the next 12 months.

The nature of Autism Spectrum Disorder means it fluctuates according to changing circumstances and demands. Whether the child has been deemed to have Autism Level 1, 2 or 3 does not have much relevance to the funding they need. Children who are considered “high functioning” can be more at risk and more distressed and dysregulated than children who need the support of a special school. I see children who attend mainstream classes who are highly stressed, who relate ineffectively with their peers and who have very low scores on a functional assessment despite reasonable academic scores.

I believe I provide a much fairer, more useful and thorough assessment for people with an Autism Spectrum Disorder than the intended Independent Assessment would provide. It is a burdensome task because it takes considerable time and thought. I have to fit them in somehow – typically at the weekend or with late nights. However, I feel I can only charge a token amount that does not cover my time, because that is typical amongst therapists and families compare charges. It would be helpful if the NDIS clarified that they expect us to charge our usual hourly rates if they request a review report detailing progress on goals and standardised assessments, together with goals and recommendations for supports for the coming year that take into account the person’s circumstances and interests. The NDIS would also need to include an appropriate allowance in the funding to provide for assessment. This would still be much more cost effective than independent assessments. Perhaps it would even encourage NDIS planners to read our reports and take heed of them.