Inquiry into independent assessments
under the NDIS
Submission to the Joint Standing Committee on the National Disability Insurance Scheme
31 March 2021
31 March 2021
Committee Secretary Joint Standing Committee on the National Disability Insurance Scheme Parliament House Submitted via email: ndis.sen@aph.gov.au
Dear Secretary,
Muscular Dystrophy Foundation Australia, Muscular Dystrophy Queensland, Muscular Dystrophy New South Wales, Muscular Dystrophy Western Australia, Muscular Dystrophy Tasmania and Capital Region Muscular Dystrophy welcome the opportunity to provide a submission to the inquiry of the Joint Standing Committee (JSC) on the National Disability Insurance Scheme (NDIS) into independent assessments.
Our organisations represent the interests of more than 40,000 people in Australia living with muscular dystrophy and similar, rare conditions. Muscular Dystrophy (MD) is an ‘umbrella’ term that refers to a group of rare, complex, genetic conditions within a wider group of more than 75 conditions collectively referred to as neuromuscular conditions (NMCs). NMCs cause progressive deterioration of muscle strength and function and commonly result in profound disability.
Our submission:
- adopts a firm position that a generalist approach to Independent Assessments is entirely inappropriate for Australians living with NMCs.
- discusses some of the compelling reasons we have adopted the above position. It does this from multiple angles which are aligned to the Terms of Reference for the Inquiry with particular focus on the appropriateness of independent assessments for people with NMCs.
- provides a constructive framework to consider in the design of a more appropriate process that would meet your policy objectives and avoid the negative outcomes likely to proliferate under the proposed generalist assessment approach as it is currently prescribed.
Our organisations are concerned about the impact of the proposed changes and would be delighted at the opportunity to discuss the matters raised further. Note that Ms. Helene Frayne (Muscular Dystrophy Foundation Executive Committee Member and Chief Executive Officer, Muscular Dystrophy Queensland) is our point of contact should you wish to discuss our submission further.
Yours sincerely,
Helene Frayne Chief Executive Officer Muscular Dystrophy Queensland
Charlotte Sangster Chief Executive Officer Muscular Dystrophy NSW
Hayley Lethlean Chief Executive Officer Muscular Dystrophy WA
Ryan Talsma General Manager Muscular Dystrophy Foundation Australia
John Salmon Vice President Muscular Dystrophy Tasmania
Bill Baker President Capital Region Muscular Dystrophy
Table of Contents
- Position statement …………………………………………………………………………………. Error! Bookmark not defined.
- Recommendations ……………………………………………………………………………………………………………………………. 3
- Discussion ………………………………………………………………………………………………………………………………………… 4
- [TOR k.] The appropriateness of independent assessments for people with particular disability types, including psychosocial disability …………………………………………………………………………………………………….. 4
- [TOR d.] The independence, qualifications, training, expertise and quality assurance of assessors ………… 4
- [TOR e.] The appropriateness of the assessment tools selected for use in independent assessments to determine plan funding ………………………………………………………………………………………………………………… 6
- [TOR f.] The implications of independent assessments for access to and eligibility for the NDIS ……………. 7
- [TOR i.] Opportunities to review or challenge the outcomes of independent assessments ……………………. 7
- Background ……………………………………………………………………………………………………………………………………… 8
Contact ………………………………………………………………………………………………………………………………………………… 9
1. Position Statement
Muscular Dystrophy (MD) is an ‘umbrella’ term that refers to a group of rare, complex, genetic conditions within a wider group of more than 75 conditions collectively referred to as neuromuscular conditions (NMCs). NMCs cause progressive deterioration of muscle strength and function and commonly result in profound disability.
A generalist approach to Independent Assessments is manifestly inappropriate for the more than 40,000 Australian’s living with an NMC. People living with a NMC in Australia face significantly increased risk of being denied access to the NDIS under the proposed assessment structure. In order to avoid devastating outcomes which would result from a large majority of the NMC community not having access to the support and services they require, the assessment process must provide opportunities for the involvement of a specialised and experienced neuromuscular allied health professional trained to recognise and predict the often complex and progressive disability related needs of people living with a NMC.
People with disability also have the right to appeal any decisions made by the NDIA.
2. Recommendations
Muscular Dystrophy Foundation endorses the recommendations made in the Every Australian Counts submission titled Disability sector statement on the Australian Government’s Planned reforms to the National Disability Insurance Scheme.
In addition, for Australians with neuromuscular conditions – which are rare, complex and progressive – the generalist approach to Independent Assessments is not fair or equitable and will lead to unacceptable risks for people living with rare conditions, such as being exposed to the loss of eligibility for an initial NDIS plan with little to no recourse to have such a decision overturned.
Muscular Dystrophy Foundation recommends that;
- the NDIS reconsider the proposed structure of Independent Assessments, to better address the unique needs of people living with a complex profile of disability which without specialised expertise can be difficult to understand, assess and predict;
- individualised, discipline specific, in-depth, evidence-based assessments and ‘hands on’ clinical assessments are the preferred assessment tool and are performed by allied health professionals within the relevant area of practice; and
- an effective appeals process is developed which acknowledges mistakes can occur under a generalist system and, when an initial application is declined or inadequately addresses a person’s reasonable and necessary needs for support, provides people with confidence and support to appeal a decision and/or re-apply for funding.
3. Discussion
[TOR k.] The appropriateness of independent assessments for people with particular
disability types, including psychosocial disability
Noting the inquiry’s Terms of Reference (TOR), this submission addresses the appropriateness of Independent Assessments for people with complex and progressive disability profiles common amongst Australians living with neuromuscular conditions (NMC). Where relevant, additional Terms of Reference are also discussed.
[TOR d.] The independence, qualifications, training, expertise and quality assurance of
assessors
Applicants and NDIS Participants are totally reliant on the Independent Assessor for their eligibility for an NDIS Plan and for their lifetime of funding if they are successful in achieving an NDIS Plan, therefore it is crucial for the Independent Assessment to be performed by highly qualified and trained allied health professionals with:
- relevant expertise to assess the Participant’s profile of disability,
- an understanding of the condition they are assessing, preferably acquired through real life interactions with people with these conditions, and
- insight into all of the aspects of their condition upon the Participant’s functional capacity.
It is our belief that these essential elements are lacking for our neuromuscular community in the planned introduction of Independent Assessments.
Qualifications:
MDF notes that the NDIA has published the following mandatory qualifications for Independent Assessors1:
- Have a minimum of 12 months full time clinical experience (post General Registration) working in their field with an appropriate level of clinical supervision.
- Have direct face-to-face experience working with a variety of clients, covering a wide range of disabilities, support needs, skills and backgrounds.
Under these guidelines members of our community can reasonably expect that their Independent Assessor is likely to be a relatively new graduate generalist, who may have no knowledge of their rare condition and who is naïve to the potential complexity in the condition’s profile, its typical limitations on physical and cognitive function and likelihood for progression and effect on future function. As such, the proposed qualifications do not engender trust in the outcomes for our community and, given the nature opharmaceuticals/NMCs - sets the system up to fail people living with these conditions.
1 https://www.ndis.gov.au/participants/independent-assessments/independent-assessors
The Case Study below illustrates the risks of relying upon a generalist without specialist knowledge to submit and assess an NDIS eligibility application for a person with a rare condition.
Assessment structure:
It is a major concern that one allied health professional, with possibly only 12 months experience in their profession may be both:
- assessing a person’s overall functional capacity (including their gross and fine motor capacity; ability to perform life roles; equipment needs; communication and swallowing; cognition; mental health; psychosocial and family issues; and
- responsible for making life altering decisions for the Participant re eligibility and funding in their NDIS plan.
Best practice would indicate that this assessment would be team based and include a range of allied health areas of practice such as physiotherapy, occupational therapy, speech pathology and social work. This is especially so for people with a complex profile of disability.
It is important to question whether a sole Independent Assessor who has been trained in clinical practice within their field, has the training and competence to perform global assessments outside their clinical role for clients with complex profiles of disability.
Case study: Risks of relying on a generalist practitioner to submit and assess an NDIS application for a person with a rare condition
redacted
[TOR e.] The appropriateness of the assessment tools selected for use in independent
assessments to determine plan funding
Under the proposed structure, the Independent Assessor will be meeting the applicant for the first time – possibly via telehealth – with a determination re NDIS eligibility/funding to be reached within three hours. This includes2:
- includes questionnaire styled screening assessments, chosen by the NDIA to meet the published criteria,
- will be disability-neutral, so could be used across all disability-types,
- assesses function, rather than impairment,
- is questionnaire-based, to avoid capturing a person’s moment-in-time function, for example on a ‘good day’, or with an unfamiliar assessor,
- is accurate and reliable.
Participants with good insight, cognitive ability and communication skills will have better outcomes in this assessment setting than those who lack confidence, intuition into the purpose of the assessment or insight into their condition. With a condition such as myotonic dystrophy the answers given may not be an accurate reflection of performance because of communication difficulties such as poor working memory.
Participants with a neuromuscular condition will be disadvantaged by this form of assessment:
- None of the tools involve an assessor laying hands on the clients to assess tone or an observation of their ability to walk or balance, assess movement, or provide recommendations for AT. Hands on and observational assessments are crucial for assessment of physical function.
- The assessments are not suitable for people with progressive conditions. Under the insurance model, if the Participant has an NDIS plan early, based their diagnosis, prophylactic treatments such as stretching and hydrotherapy will contribute to muscle health and mitigate the need for more funding later.
- The questionnaire style is not suited to people with cognitive disability, for example the questions in the WHODAS are vague and the Participant, who may lack insight and understanding of the progress of their condition, is required to provide a subjective opinion of their functional performance.
- Using these assessments taken on a single day, fluctuations associated with progression, pain and fatigue, all common symptoms of NMCs, cannot be assessed.
In any assessment, it is important for the allied health professional to use their expertise to interpret, predict (according to their knowledge of the condition) and make informed recommendations in the interest of the Participant. This is not possible with the generalist Independent Assessor, making determinations outside their area of clinical expertise, using structured generalist screening assessments.
2 https://www.ndis.gov.au/participants/independent-assessments/independent-assessment-toolkit
[TOR f.] The implications of independent assessments for access to and eligibility for the
NDIS
[TOR i.] Opportunities to review or challenge the outcomes of independent assessments
“The real worry for us is that these results cannot be challenged or appealed easily,” says David Moody, CEO of NDS. “In fact, people will not be given a copy of the full assessment report unless they apply to see it and the hurdles that presents for a person with disability is unacceptable.”
The initial Independent Assessment is the only opportunity available to the client to gain access to an NDIS Plan. Section 3.11 of the NDIS Consultation: Access and Eligibility Policy with Independent Assessments states:
“Disagreeing with the results of an otherwise sound and robust independent assessment is not sufficient for the NDIS to fund another assessment. Applicants can only seek a second assessment where the assessment was not consistent with the independent assessment framework, or if the applicant has had a significant change to their function capacity or circumstances.”
The state based muscular dystrophy organisations are involved in assisting clients with neuromuscular conditions to make subsequent applications, supported by additional information from medical and allied health professionals who have knowledge of their conditions. In our experience, inaccurate assessments of eligibility regularly occur under the current system.
Under the new system of Independent Assessments, unsuccessful applications for eligibility will continue to occur or may become even more common, but there will be no avenue for subsequent applications or appeals of decisions. This is a very serious problem, especially for people with rare, complex and progressive conditions.
It is vital for the NDIA to outline the appeals process, to ensure that it allows for various circumstances under which a Participant may need to appeal, and to give the applicant the confidence and support to appeal and/or re-apply when the proposed generalist eligibility process fails or when their NDIS Plan fails to adequately address their reasonable and necessary need for support. Without an equitable and efficient appeal process, Australians with complex conditions will be at higher risk of;
- permanently losing their right to access the NDIS or having to wait up to 5 years or to prove a significant progression has occurred before they can re-apply; and
- not having adequate funds to enhance their quality of life and increase their economic and social participation.
4. Background
Muscular Dystrophy Foundation Australia is the national peak body for Australians living with neuromuscular conditions. We are committed to advocating on behalf of our community to influence improved health, social and economic outcomes for all Australians living with neuromuscular conditions. MDF’s members are state and territory-based organisations which provide specialised support and services for their neuromuscular communities. This includes providing professional services as registered NDIS providers.
With rapidly evolving diagnostic techniques and the unravelling of the human genome, science is yet to uncover the actual incidence rates of the more than 75 known neuromuscular conditions. We do know that the prevalence of neuromuscular diseases is at least as high as Parkinson’s disease worldwide (100 - 300 people for every 100,000) and twice that of Multiple Sclerosis in Europe (800 people for every 100,000)3. Based on Australia’s current population of 25.88 million people we estimate that 41,408 Australians currently live with one or more of these conditions.
Some neuromuscular conditions can be clinically diagnosed at birth and in others symptoms do not appear until toddlerhood; childhood; adolescence; early or late adulthood. Many conditions are equally distributed amongst genders, while some, such as Duchenne muscular dystrophy appear mostly in males and others, such as Myasthenia Gravis, occurs twice as often in women.
All neuromuscular conditions result in a complex, progressive profile of disability over the lifetime of the person living with a condition. Each condition has a set of features unique to that diagnosis but they almost always include a severe impact upon the functional capability of the client, caused by:
- Progressive muscle weakness in all muscles of the body, mostly leading to profound physical disability.
- Significant and fluctuating fatigue and pain which progress with the condition.
- In many cases, reduced life expectancy.
Some conditions, for example, Myotonic Dystrophy, may also have a specific cognitive profile which is often overlooked by medical practitioners, NDIS assessors and planners, resulting in failure to achieve NDIS eligibility upon initial application.
As part of the implementation of the new NDIS Functional Capacity Assessment Framework, the NDIA will implement what they call Independent Assessments, a mandatory requirement assessment for NDIS eligibility. It is MDF’s position that the proposed framework manifestly disadvantages people living with neuromuscular conditions.