Save Our Sons Duchenne Foundation (SOSDF)

Submission to the Federal Parliamentary Joint Standing Committee on the National Disability Insurance Scheme (NDIS) – Inquiry into the Use of Independent Assessors.

March 22 2021

Executive Summary:	Page 3
Who We Are:	Page 9
Consultation Process:	Page 9
SOSDF Responses to Terms of Reference	Page 11
Conclusion:	Page 25
Recommendations:	Page 27
Bibliography	Page 29
Attachment One: Consultation questions:	Page 30
Video Attachments:	Page 32

“The introduction of independent assessors will add an additional cost to the NDIS process (not incurred by the participant but is money that would be better spent in meeting participant care) require a significant amount of additional time for the participant and will add yet another stranger to their already highly medicalised life and may contribute to their stress/trauma (depending on the reason for their NDIS need) by having to re-tell their story to another stranger. It also puts added burden on the participants parents/caregivers in needing to be the experts in their child’s condition in order to advocate for their child, and to educate the independent assessor on their child’s condition in order to ensure their needs are adequately met”.

Julia a mother with a boy with Duchenne from South Australia.

“Are you helping me or just saving money?”

Sally a mother of a boy with Duchenne from country NSW.

Executive Summary

The Save our Sons Duchenne Foundation (SOSDF) welcomes the opportunity to provide the following submission to the Federal Parliamentary Joint Standing Committee (“the Committee) on the NDIS -Inquiry into the Use of Independent Assessors.

This submission was drafted after extensive consultation with the Duchenne and Becker muscular dystrophy community in Australia.

Duchenne and Becker muscular dystrophy is the number one genetic disorder experienced by boys (approximately 1 in every 3,500 births) and rare girls in the world. It is a rare disease which is characterised by progressive muscle degeneration and weakness due to the alterations of a protein called dystrophin that helps keep muscle cells intact. They are killer conditions, which with the passing of time, gradually destroys every muscle function in the human body and inevitably culminates in the untimely and premature deaths of too many young people.

Appropriate and efficient access to the financial support and assistance of the National Disability Insurance Scheme (NDIS) is therefore critical to the life chances and quality of life prospects of families who are struggling with the progressive and fatal nature of Duchenne and Becker muscular dystrophy.

In the absence of a cure for Duchenne and Becker muscular dystrophy and with medical and technological advances extending the life expectancy of boys with this fatal condition, it has become critical to ensure that the health burden and social costs for Duchenne and Becker families be minimised. These additional health costs have been captured in the landmark McKell report Living with Duchenne and Becker in Australia: Supporting Families Waiting for a Cure1 commissioned by SOSDF (a full copy of this report is attached to this submission - please also refer also to https://www.saveoursons.org.au/introductory-video-save-our-sons- duchennefoundation-keynote-report-into-duchenne-and-becker-in-australia/).

According to this report, which was officially launched by a number of Federal politicians from across the political spectrum at Parliament House in Canberra in September 2020, Duchenne in particular is associated with significant lifetime health and social care costs. It is estimated that these can total up to $2.25 Million for a child living until their mid-thirties2. In addition, informal care costs total up to $630,000 in terms of reduced female participation in the workforce. On average, the financial cost of Duchenne over the lifetime of a child born today can be expected to be $1.3 Million with the cost for a child living to their mid-thirties of $2.88 Million.

Families also reported high out-of-pocket medical costs, ranging up to $1800 per month. Out-of-pocket costs were much higher in NSW than in other States and

1 McKell Institute “Living with Duchenne and Becker in Australia. Supporting Families Waiting for A Cure Page 44. 2 McKell Report Page 12

Territories3. Out-of-pocket costs in NSW were $430.43 per month on average, compared to $250 per month on average across the other States and Territories.

Unfortunately, for many families outside the metropolitan centres these disease cost burdens are simply heightened as there may be few or inadequate locally based health, GP, neuromuscular and emergency services (cardiologists, endocrinologists, physical therapists, pulmonologists etc.) and very sparse, or limited knowledge amongst health professionals in rural and remote communities of the Duchenne and Becker conditions. Furthermore, the travel and accommodation costs involved in accessing the appropriate care for boys with Duchenne and Becker (typically involving travel to metropolitan hospitals) is only partially offset by existing schemes/subsidies such as the Isolated Patients Travel and Accommodation Assistance Scheme (IPTAAS) which operates in NSW.

The McKell report not only highlighted the huge costs met by families dealing with these conditions (refer also Appendix A pages 44-45) but also on a number of occasions, the unresponsiveness and delays by the NDIS in meeting some basic needs.

Said one mother with a boy with Duchenne from Queensland4:

“Receiving equipment and support is still just as slow under the NDIS and the amount of paperwork and hoops to jump through is bigger. I’m still waiting for a manual wheelchair after six months even though NDIS only took a few weeks to approve”.

And says another carer from Western Australia5:

“NDIS is shocking and causes families unnecessary stress, as they don’t understand the condition”.

While the Tune report into the NDIS made numerous recommendations, which should, if implemented, address many of the Duchenne and Becker community concerns about NDIS, the proposal to introduce Independent Assessors has polarised our community and has brought many new concerns to the surface.

3 McKell Report page 22 4 McKell report page 23 5 McKell Report page 23

On that basis, the Save Our Sons Duchenne Foundation (SOSDF) was greatly encouraged by the decision of the Federal Parliamentary Joint Standing Committee of the NDIS to establish an Inquiry into the use of Independent Assessors (IAs) shortly after the NDIA had issued consultation papers which were clearly firming up the decision to move towards a uniform and global system of Independent Assessment. We are also grateful for the opportunity this Inquiry now provides for our organisation to put forth our views and concerns in relation to IAs.

In short, SOSDF shares many of the concerns that have already been advocated over many months by a range of disability groups, organisations and individuals in relation to the proposed use of Independent Assessors. These concerns largely go to the skills and qualifications of the IA’s, the raison d’etre of the Independent Assessment process, the loss of control over the assessment process for NDIS users, the “one size fits all approach” of the IA’s and the inherent inadequacies of IA’s properly understanding and appreciating the complexities of rare diseases such as Duchenne and Becker muscular dystrophy - and the marginalisation of health care professionals who may have long standing and established relations with the NDIS user and their family/care-giver.

Our community concerns are very much reflected in the views of many disability advocates and organisations who have been strident in their outspokenness on the proposal to use Independent Assessors. Our concerns are also highlighted and reflected in many recent media reports such as the one which appeared in the Sydney Morning Herald on 22 February 2021 “NDIS needs reform but flawed assessment model requires more work6”. In particular, concerns which go to the lack of an effective appeals process for assessment outcomes and the suitability of Independent Assessors to adequately capture the functional capacity of the NDIS user.

“According to Occupational Therapy Australia, the proposed NDIS independent assessments are “inaccurate” in the measurement of functional capacity and not based on evidence because they are over-simplistic and rely solely on a set of raw assessment scores based on an interview with a government-contracted assessor not guaranteed to have experience with any particular disability7”.

6 Sydney Morning Herald “NDIS needs reform but flawed assessment model needs more work” 22/2/2021 7 Sydney Morning Herald “NDIS needs reform but flawed assessment model requires more work” 22/2/2021.

In recent days there have been a number of further articles published in the Sydney Morning Herald (Leaked laws reveal plan to kick Australians off the $22 billion NDIS8) suggesting that major cuts are forthcoming to the NDIS with Independent Assessors an instrumental component in this cost savings process. The Herald quotes a coalition of 20 disability organisations who issued a statement (which resonates with much that we have heard from the Duchenne and Becker community) which reads:

“While we all want greater consistency, we are very concerned this increasing automated process will not adequately consider individual need and circumstance. This is not the NDIS we fought for. These changes will fundamentally alter the individualised and personalised nature of the NDIS9”.

While this submission will be highlighting the concerns of the Duchenne and Becker community with the proposal to introduce Independent Assessors, our community nonetheless acknowledges that there is some need to reduce the complexity and costs involved for some families in establishing NDIS eligibility and levels of funding. Further, that too much at present may hinge on the ability or not, of the NDIS user to engage the services of good advocates who are able to secure greater levels of funding and support from the NDIA than those without access to such advocacy.

In the words of one mother with a boy with Duchenne:

“Sometimes it’s about the power of advocacy not the merits”.

8 Sydney Morning Herald “Leaked Laws Reveal Plan to Kick Australians off the $22 billion NDIS” 9 Sydney Morning Herald “Leaked Laws Reveal Plan to Kick Australians off the $22 billion NDIS”.

There were also some suggestions that the original NDIS system had been “cobbled together” too quickly, that it had become a revenue raising rort for a number of NDIS providers and that there was a need to tighten up some aspects of the scheme.

Be that as it may, the use of Independent Assessors as currently proposed was not seen by our community as the panacea for the Federal Government’s concerns on equity, transparency and costs-in the current implementation of NDIS. Rather, the use of IAs was seen as compounding existing problems and creating a whole new batch of concerns which potentially, compromise some of the original and key objects and principles of the NDIA Act 201310. Namely that the NDIS:

3. Objects:

Provide reasonable and necessary supports, including early intervention supports, for participants in the National Disability Insurance Scheme launch;

Enable people with disability to exercise choice and control in the pursuit of their goals and the planning and delivery of their supports;

Promote the provision of high quality and innovative supports that enable people with disability to maximise independent lifestyles and full inclusion in the mainstream community;

4. Principles:

That:

People with disability and their families and carers should have certainty that people with disability will receive the care and support they need over their lifetime;

People with disability have the same right as other members of Australian society to be able to determine their own best interests, including the right to exercise choice and control, and to engage as equal partners in decisions that will affect their lives, to the full extent of their capacity;

People with disability should be supported in all their dealings and communications with the Agency so that their capacity to exercise choice and control is maximised in a way that is appropriate to their circumstances and cultural needs; and

The role of families, carers and other significant persons in the lives of people with disability is to be acknowledged and respected.

10 National Disability Insurance Scheme Act 2013 Part 2 Objects and Principles

Who We Are?

SOSDF was founded in 2008 and is the peak body for those living with Duchenne and Becker muscular dystrophy (around 1,000 young people) across Australia. Our vision is to find a cure for Duchenne and Becker muscular dystrophy whilst actively working to ensure enhanced quality of life (including quality of health, educational, employment, social opportunities) for those young people and their families affected by this condition. Advocacy and community engagement work are crucial to achieving this vision along with ongoing fundraising and events management designed to raise funds for essential research, service delivery and the provision of critical resources and equipment to the Duchenne and Becker community.

Along with the funding of a critical neuromuscular nurses program in some of our major children’s hospitals across Australia, SOSDF also delivers a telehealth nursing service, scholarship programs, critical equipment and resources (such as wheelchairs, scooters, cough assist machines, and portable ventilators) and a number of initiatives and programs such as the Women in Duchenne webinars and music therapy which are designed to enhance the quality of life, skills and social development of young people suffering from Duchenne and Becker. We are also currently in the process of setting up an NDIS Coordinator service to assist the Duchenne and Becker community specifically navigate the current NDIS system and process.

Finally, SOSDF is also responsible for major research projects such as the aforementioned landmark Mc Kell report. For more information on SOSDF and the (cruel) Duchenne and Becker conditions please refer to the attached web link www.saveoursons.org.au.

SOSDF Consultation Process:

SOSDF determined to consult as widely as possible with the Duchenne and Becker community in the preparation of this submission. Social media posts were initially organised encouraging the community’s participation and feedback to the Inquiry. Following this, a series of individual Zoom consultations of 30-45-minutes duration were held with parents/carers and some allied health professionals across Australia.

A series of questions were posed to those involved in the consultation, a copy of which appears at Attachment One at the conclusion of this submission. These questions largely mirrored the Terms of Reference for the Inquiry.

It is also worth noting that in addition to this consultation on the Committee’s (TOR’s) extensive consultation with the Duchenne and Becker community had already been undertaken by the Mc Kell Institute as part of their research on behalf of SOSDF. While the research undertaken was broad based and going to many issues (of which the NDIS was one), nonetheless some useful insights on NDIS were obtained. Over 173 responses to a national survey which was designed and delivered by the Institute were secured as part of this research.

Submission structure:

Our submission will not attempt to address all TOR’s covered by the Inquiry. Rather, we will focus only those matters and TORs identified by our community as being of most concern to them.

SOSDF will subsequently make a series of recommendations at the conclusion of this collective response. And while SOSDF will maintain that the Independent Assessment model is unsuitable (and flawed) for usage with the Duchenne and Becker community, we will nonetheless take a pragmatic approach and be making some recommendations as to how this model should be implemented if the Government does determine to proceed with Independent Assessors (as appears most likely).

Finally, as an addendum to this submission we have attached some impactful videos which we would urge the Committee to review and consider as they provide invaluable insights into the “lived experience” of those who are suffering from Duchenne and Becker.

Although pre NDIS, the wonderful documentary on Kieran Dix (the 6th of 9 brothers and the one with Duchenne) demonstrates the terrible impact of this disease on families but also highlights the great strengths, resilience and tenacity of this particular community.

SOSDF Responses to the Terms of Reference:

A. The development, modelling, reasons and justifications for the introduction of independent assessments into the NDIS.

SOSDF shares the concerns of many disability advocates and organisations that insufficient consultation and modelling was undertaken in the development of the independent assessment models. The pilots which were organised were limited and to our knowledge involved very few (hand-picked) NDIS users. We are also aware that some of the members of our community who were approached to participate in the pilots, declined for various reasons.

As detailed earlier, our community has been prepared to acknowledge the justification given for the introduction of independent assessments recognising that fairness and equity and reducing the overall cost burden on families are key principles in the delivery of NDIS. It has also been recognised that NDIS can be an attractive “money spinner” for many organisations, not that this is likely to be changed under the proposed model - unless there is tighter regulation and controls on the Independent Assessors and the organisations they are working for.

Despite this, a “one size fits all” standardised approach of Independent Assessment as proposed by the Government is not seen by our community as the silver bullet - especially where complex rare diseases such as Duchenne and Becker muscular dystrophy are at play.

A number of families have also highlighted that in relation to the costs currently incurred gathering reports/evidence for NDIA assessment and funding allocation, that these costs are typically offset by the actual budget that is embedded in the NDIS planning process moving forward. Says one mother of a boy with Duchenne from Victoria:

“The Independent Assessment won’t reduce my costs. The costs of reports used to always get absorbed in the package”.

Says another carer of a boy with Duchenne from central NSW:

“I am not sure how it would be more transparent, less costly and equitable. There might be benefits such as not having to obtain a range of assessments/reports from specialists, but not if this has an adverse effect on the assessment. We get reports anyway for general health and best care and would like these to be part of plan preparation, so for us it would not be less costly. Again, is it less costly for the recipient or the govt?”.

Further, there is the legitimate concern that the cost of employing an army of Independent Assessors (many of these are likely to be secured from for profit companies) is going to require considerable NDIS/Government funding. The funding of IA’s may well come at the expense of direct NDIS support and assistance and is an important consideration wherever cost arguments are raised to justify their introduction.

While arguments highlighting equity issues to justify the introduction of IA’s appear sound, they are largely compromised given the narrow focus and limitations of the proposed IA process. Says Chris a young man with Duchenne from NSW:

“People with disabilities will still want their specialists to provide information and give the best idea of what their needs are. This is not going to be less costly, but more costly. While IAs might give all people with disabilities the same lens to be seen through, it is a narrow one and will mean many needs will fall through the cracks in

the system. And while it is transparent, it does not provide the depth needed to make a realistic and fair judgement about someone’s needs when it provides such a narrow frame of reference”.

Finally, one suggestion made by our community to address the seeming conflict/incompatibility between the cost and equity arguments (which are being used to justify the introduction of IA’s) and those arguments going to the need to maintain established practices, is to provide NDIS users with the option/choice. Simply meaning, that NDIS users be able to determine whether they want to utilise the services of an Independent Assessor or whether they want to continue to gather their own reports/evidence from health professionals of their own choosing for NDIS eligibility and funding. The provision of a choice would be both empowering and consistent with the rights of self-determination for people with a disability. Furthermore, it would “put the acid” on the providers of Independent Assessment to deliver a service which is efficient, cost effective and appropriate to those living with Duchenne/Becker – in order that they are the preferred option chosen by families to undertake the functional capacity assessment process.

B. The human and financial resources needed to effectively implement independent assessment:

C. The independence, qualifications, training, expertise and quality assurance of assessors:

SOSDF is of the view that the two terms of reference above have considerable overlap and should be dealt with together.

By far the greatest concern of the Duchenne and Becker community in relation to the use of Independent Assessors concerns the suitability (and lack of understanding, empathy) of individual IA’s to undertake the functional capacity assessment of complex rare disease conditions such as Duchenne and Becker muscular dystrophy - and within the limited timeframes/processes that people understand are available.

Without some experience and training in muscular dystrophy our community believes the assessment process will be compromised with corners cut and needs going unmet. A false and/or inaccurate picture of the needs of Duchenne and Becker boys and men will be inadvertently created.

Says one mother of a Duchenne boy:

“Assessors should be highly trained and have a high level of understanding of the condition of the client they are working for. I worry that assessors lack specific knowledge of the client’s disease and progression (especially progressive diseases such as Duchenne and Becker) and local factors such as distance from practitioners.”

And this from Linda a mother of a Duchenne boy on the Gold Coast.

“I have concerns about the experience of the Independent Assessor to make a qualified assessment. This is a condition that affects all parts of the body and you have such a multi-disciplinary team looking after them at the moment. Some random with a clipboard with multiple choice answers just can’t do this”.

Another mother of a Duchenne boy in South Australia commented in a way which was typical of many of our families:

“The use of IA’s is going to make it a lot harder for people to access what they need. They are taking away specialists…. If just following a prescriptive formula, they are not going to understand the child’s needs”.

And finally, Michele a nurse from Western Australia and mother of a boy with Becker commented:

“How are they going to determine what a Duchenne and Becker boy needs? Where have they got their information from. Do they even refer to the International Standards of Care”?

Subsequently in relation to the terms of reference which go to the human and financial resources required to effectively implement independent assessments, SOSDF would argue that substantial funding is required to train, support and develop Independent Assessors so that they have the appropriate knowledge, commitment and wherewithal to undertake proper and comprehensive assessments with rare disease communities such as Duchenne and Becker. Further, that IA’s be appropriately resourced, equipped and remunerated to ensure that good quality and high standard levels of service are delivered at all times - and the sector is able to retain the best and most experienced people.

If an Independent Assessment model is to proceed, funding should also be allocated to establish specialist IA’s who undertake functional capacity assessment with rare disease communities only. Families should also be given the choice of which IA to utilise from amongst this pool of specialists and/or the broader generic pool of IA’s.

Special consideration (and funding) must also be given to overcome the barriers of distance and to ensure the provision of appropriate IA’s in rural and remote areas of Australia.

Increased resources and funding should also be allocated to ensure the retention of other key players involved in NDIS delivery such as the LAC’s and other NDIS planners. SOSDF has heard frequent complaints about the turnover and churn of existing staff and the difficulties in establishing new relations with LACs and others involved in their NDIS planning.

This from Chris again a young man with Duchenne from NSW:

“Another issue has been the changeover in LACs during my time on the scheme. I have had almost 10 different LACs over 5 or so years which makes continuity of

communication difficult. I was not informed my last LAC had left the organization and this added to the stresses of the NDIS.”

Many parents and carers have expressed concerns about the assessment process only capturing a particular moment in time and failing to address and appreciate the complex nature of DMD/BMD which can vary by the hour, the day and by individual NDIS users over time. Inadequately trained and qualified IA’s who lack an understanding of the disease are therefore more prone to make inaccurate and flawed functional capacity assessments which do not reflect the true nature of the condition and the support which is required.

Says Linda the mother of a Duchenne boy from the Gold Coast:

“Everyone progresses at different stages and age is not so important. It is an ever moving goalpost for us. What is assessed in January won’t be the same in July”

And this from Alison a mother of a Duchenne boy from Wagga;

“They (IAs) have no contextual relationship with what’s happening. At the moment we can have the same person coming for a few years in a row. In general, we get a person who has our interests at heart”.

Funding resources will subsequently need to be arranged/delivered with worse case scenarios in mind, and not simply be reflective of what the IA determined as functional capacity on the given assessment day.

Throughout our consultation process it was also highlighted that not only would many boys struggle to sit through assessment interviews but also there was the potential for boys to downplay those tasks which they were not capable of performing– out of pride, expediency etc. Without a good knowledge of the condition, sensitivity and empathy, the view was that many IA’s simply would not pick this issue up.

Concern was also raised that ill-equipped IA’s could re-traumatise families and young people required to talk about their muscular dystrophy to complete strangers with little or no exposure to their condition. Asks one carer of a Duchenne boy:

“Why have we gone down this path? The current system is better and not having to tell story again to a complete stranger is really important. It brings up trauma”.

STOP PRESS!!!!!

While in the midst of compiling this submission, SOSDF has been advised that the NDIA had already announced on 26 February 2021, those organisations which had successfully secured tenders to deliver the Independent Assessments. Those organisations we believe who have been contracted for a period of three years are:

Outlook Matters Psychology, Innovative Rehab, Pain NT
Konekt
Rehab Management (Aust) Pty Ltd
Access Care Network Australia
IPAR Rehabilitation
Advanced Personnel Management (APM)
HealthStrong
Allied Care Group

This is an extremely disappointing development which is highly pre-emptive and appears to undermine and compromise both the NDIA consultation processes and this current Inquiry. It is also extremely disappointing for those organisations and individuals from the rare disease and disability sectors who were participating in this process in good faith, to be advised that organisations have already been selected to an IA panel.

SOSDF would subsequently urge a pause in relation to this tender process and a reassurance to all who are participating in this consultation, that our views and feedback will be genuinely taken on-board - with nothing set in concrete nor made irreversible as currently appears to be the case.

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

Generally, our community has a limited understanding of the assessment framework and the tools which are proposed to be utilised in the independent assessment process. To the best of our understanding, there was no or limited consultation with experts and health practitioners working within the field of Duchenne and Becker muscular dystrophy when developing the framework and designing and determining the tools – and certainly, there was nil consultation with any of our families prior to the drawing up of the assessment framework and the specific independent assessment tools.

While a standardised assessment framework and tools may help to address some iceues [sic] of fairness and transparency in relation to the assessment process (particularly for families who cannot afford to pay for expensive reports and opinions), our community does have some real concerns about its implementation. Typical of many of the comments we subsequently received are the following:

“Its new-anything that’s new needs a lot of time…..and I don’t understand how an independent person with no clinical experience can truly encompass a standard questionnaire on a client. I fear that eg, because Ollie can “walk” (albeit not functionally/long periods) his needs may not be portrayed accurately….People with disabilities don’t fit into boxes. “Walking” does not mean the same thing for everyone! A “hoist transfer” does not mean the same thing for everyone (eg, some really complex clients on ventillators [sic] may need 3 people to help, whereas someone else may need 1 person to help. Say NO!”

(An Occupational Therapist based in Sydney working with boys with Duchenne.)

Then says Alison a mother of a boy with Duchenne:

“I feel it’s very clerical…here’s your manual tick a box. Go in and tell us what the person needs. The whole personal connection is lost”.

And this from Roisin a mother of a Duchenne boy from Sydney:

“The NDIS was never set up to be standardised or to use standard measures. What’s the point of re-inventing the wheel and using people who have never dealt with Duchenne. It’s not going to be a true reflection of what happens when our boys get up in the morning….”

Sally from Wagga and mother to a boy with Duchenne concluded in relation to the assessment tools:

“It needs to be personalized - some of the assessment tools seem to be quite generic, screeners not specific/detailed assessment. Drop down boxes are not adequate as every case is different”.

Finally, and in relation to the assessment process SOSDF notes a recent 11Editorial in the Sydney Morning Herald on 29 March 2021 (Specious Approach to Reform a Threat to NDIS consensus) and the concerns raised by many disability advocates about the move to a standardised three hour assessment process. These advocates echo many of the concerns of our community and have argued that these changes “are primarily about cutting costs rather than helping the disabled. They say a three hour assessment based on cookie-cutter nationwide criteria are not the best way to develop an individual plan12”.

SOSDF consequently recommends that the Federal Government implement a major communication process with NDIS users and their families to explain and inform users about the assessment framework and the particular assessment tools which will be relied on for the functional capacity assessment. Furthermore, and while we

11 Sydney Morning Herald “Specious approach to reform a threat to NDIS consensus” 29 March 2021. 12 Sydney Morning Herald “Specious approach to reform a threat to NDIS consensus” 29 March 2021. 19

understand there may be some familiarity with tools such as the Pedi-Cat and Vineland, we say it will be necessary for the Government to demonstrate that these and other assessment tools, are appropriate for assessing all the complexities and vagaries of Duchenne and Becker muscular dystrophy. To date, the case for these assessment tools has not been made.

Almost universally we have heard how our community believes it is critical that other reports/advice/clinical opinions/progress reports from treating specialists and other health professionals who have worked with Duchenne and Becker families be considered alongside the final report which is produced by the IA. Quite concerningly, SOSDF has found nothing in any of the consultation documentation which suggests (or requires) that the reports of others health professionals (especially those already working with families) will be factored into the assessment outcomes.

Even where members of our community (including those who are currently delivering NDIS support to Duchenne and Becker families) see merit in the proposed assessment tools, they have nonetheless stressed the need to ensure that the assessment tools not be utilised as stand-alone instruments to determine an NDIS user’s functional capacity.

Says Marg who works for a NDIS provider in South Australia:

“Vineland is quite good for Duchenne and Pedi-Cat is not too bad as long as there is a clinical opinion running alongside it”.

And this from a young man with Duchenne:

“I am concerned this change will reduce the weighting of reports from specialists who have knowledge of each person with disabilities (PWD)circumstances and abilities. Someone who sees a PWD for a few hours CANNOT understand that person as well as a specialist who could have known the PWD for a decade. I am worried more importance will be placed on the IA report than reports from specialists. For many people living with both mental and physical issues, meeting and opening up to a complete stranger within a few hours is not possible and the IA will not be able to gain an understanding of these individuals because of this. This is completely unfair”.

Finally, another suggestion coming from our community is that health professionals who work closely with the Duchenne and Becker community be taught to administer the independent assessment tools – thus cutting out the need for Independent Assessors and ensuring that professionals with experience in and appreciation of, Duchenne and Becker muscular dystrophy along with established, trusting and respectful relations with the families, are conducting the assessment process.

E. The Implications of independent assessments for NDIS planning, including decisions relating to funding reasonable and necessary supports.

Consistent with the commentary above, many families in our community are concerned that Independent assessments will fail to deliver the planning necessary for the delivery of reasonable and necessary supports.

As already argued above, an IA who is not cognisant and experienced in the complexities of Duchenne and Becker will simply “gloss over” the reality of the situation and administer an assessment which is only able to capture a particular point in time - an assessment which subsequently fails to acknowledge how this disease can change from hour to hour, day to day. Planning decisions will potentially have a number of shortcomings as a result and will fail to foreshadow (and provide) funding and supports at critical times in the progression of the disease.

Julia a mother of a Duchenne Boy in South Australia comments;

“I’m concerned they are only looking at what they see on the day. Therapists know things you haven’t thought about and they can foreshadow things for you”.

Ironically, as highlighted by Michelle a mother of a Duchenne boy from South Australia, if the IA gets it wrong, then there could be additional costs flowing to NDIS:

“There will be more costs to the NDIS because if the IA has no understanding of the condition, poorly suited equipment will be provided which simply doesn’t last long enough”.

F. The circumstances in which a person may not be required to complete an independent assessment.

Many in our community were of the view that the Duchenne and Becker boys and young men should not be required to undertake independent assessments in order to determine eligibility and access the NDIS. The nature of the disease is such that at the end of the day, those with the condition are all going to end up with the same high needs - and subsequently there is a view that they should not have to prove the merits of their claims for NDIS support.

There is also a belief that the NDIA should already have enough data available to it on Duchenne and Becker, in order to predict and provide for the needs of the families and NDIS users. Put simply, why “reinvent the wheel” particularly if reports and advice from other health professionals have already been obtained by families? There is also a strong sense that the independent assessor process is simply another unnecessary health imposition on families and young people who lives are already constantly subject to medical appointments and review.

Says Sally a mother of a Duchenne boy:

“It would be beneficial to not have to continually “prove” your disability provided there is a full understanding of the progressive and unpredictable nature of the disease (things can plateau for a time, or they can change quite suddenly). Again, it is about the level of skill and understanding of the assessor. If it is truly independent, they should be pushing for the very best plan for the client and not the NDIS”.

And this from Alison, the mother of a boy with Duchenne which summarises the overriding sentiment of our community:

“You have nothing to prove if you have Duchenne”.

If the NDIA remains concerned that the information provided by a particular family/NDIS user from the Duchenne and Becker community is inadequate or that there are information shortcomings in particular areas, then families/NDIS users should be given the opportunity to seek further information from their own health professionals and in a context of their choosing -before there is any unilateral decision to have an Independent Assessor intervene.

G. Opportunities to review or challenge the outcomes of independent assessments.

A major flaw and shortcoming of the proposal to introduce Independent Assessors is the complete lack of appeal/review process and rights available to the NDIS user and their family seeking to contest the independent assessment outcome. This is fundamentally unjust given that the NDIS planning and budgeting process all turns on the assessment outcome.

As it stands, there is no way to contest the assessment of the IA (irrespective of the experience, conduct and understanding of Duchenne and Becker demonstrated by an IA) and the only avenue available to the NDIS user is further downstream in the NDIS process - whereby the NDIS user can attempt to change an NDIS decision internally, or is forced to go down the protracted, prohibitive and personally stressful route of an appeal to the Administrative Appeals Tribunal. Even then, the IA outcome remains exempt from any challenge or review.

Says one carer of a boy with Duchenne:

“I am concerned that there may not be provision for a review until after the initial assessment. We have had to challenge our plan repeatedly in the past, but this does not seem to be less costly or transparent”.

As our Mc Kell report laid bare, there are already huge social, professional and personal costs involved with the Duchenne and Becker conditions. Families and NDIS users simply cannot afford to be contesting the outcomes of poor NDIS decision-making which is based around an IA process which does not capture and accurately reflect the complex support needs and issues arising from the disease.

IA outcomes must be subject to the review of families and NDIS users and other health professionals -to avoid unnecessary disputation and to ensure plans are established on a sound basis with provision made for all necessary funding and supports.

Opportunities/processes to review or challenge the outcome of an independent assessment should be user friendly, expeditious and clearly understood by the NDIS user, family and other health professionals.

Consistent with our views in other parts of this submission, SOSDF also believes IA outcomes will be less prone to appeal/review, if these assessments are informed and cognisant of reports/advice of other health professionals who are working with boys and young men with Duchenne and Becker and may have established relations with families. The independent assessment will also be less prone to appeal/review if the IA pool is inclusive of people who are specifically trained and experienced in rare diseases such as Duchenne and Becker.

h. 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.

SOSDF maintains that Independent Assessments which are unilaterally imposed are inappropriate for rare disease communities such as Duchenne and Becker muscular dystrophy. We say they will likely fail to adequately capture and represent the complexities of these conditions resulting in flawed NDIS planning and budgeting processes.

These issues will be compounded in regional, rural and remote areas where the prospects of having an Independent Assessor who is adequately trained and versed in Duchenne and Becker is even less likely. It beggars the question as to where will IA’s be drawn from to service the regional, rural and remote areas of this country?

Additional funding should therefore be made available to those families and NDIS Users in rural and remote locations so that they are able to access the best IA’s available and on an equivalent basis to those living in the capital cities.

Finally, if Independent Assessors are to become the chosen model for the NDIS (as clearly appears the case) SOSDF argues that families and NDIS users be given the choice of 1) the continuation of the current status quo -where families and NDIS users obtain their own health reports and advice for purposes of NDIS eligibility and

funding, and/or 2) have the choice as to which IA to utilise for the functional capacity assessment.

CONCLUSION

This Parliamentary Inquiry provides an invaluable and unique opportunity to constructively progress a number of concerns which the Duchenne and Becker community currently harbor in relation to the proposed use of independent assessments in the NDIS process.

SOSDF is therefore extremely thankful that the Standing Committee of the NDIS has established this Inquiry with cross-Party, bipartisan support. It demonstrates an important political consensus around the need to consult further about the highly contentious introduction of Independent Assessors to determine functional capacity for NDIS eligibility and funding.

NDIS is a critical scheme for our community which plays a vital and pivotal role in improving and enhancing the quality of life prospects of our community members. On that basis, we have prioritised the need to submit comprehensive collective responses to this Inquiry and also to the NDIA, (refer attached) who recently released a series of consultation papers -one of which specifically went to the proposed use of IAs’

This submission although forthright in many of the arguments put forward, has nonetheless been written in good faith and as an attempt to make an important contribution to this consultation process. SOSDF has endeavoured to raise key issues as fairly and as accurately as they were articulated to us by members of the Duchenne and Becker community.

Our organisation, along with the wider Duchenne and Becker community, would welcome any further opportunities (e.g., public hearings) to participate and provide feedback to the Standing Committee.

In summary, we remain largely opposed to the introduction of Independent Assessors believing they are not the appropriate mechanism to work with complex rare disease community such as ours. That said, we have made a number of

(pragmatic) recommendations which are suggested on the basis that IA’s in some form or the other, are likely to be introduced.

To conclude in the words of Chris a young man with Duchenne who best captures some of the difficulties involved with any new model of independent assessment:

“No two people are alike, and the same goes for people living with disability. This feels like a one-size-fits-all solution which doesn’t adequately highlight these individual differences, differences a person with disabilities’ specialists have the best idea of. It feels like IAs will group people with disabilities into broad categories that do not allow for differences in individuals’ needs to be adequately met”.

…………………………………………..

RECOMMENDATIONS:

That the Federal Government NOT introduce a system of Independent Assessors and subsequently, withdraws the current contracts of organisations who successfully tendered to be on the Independent Assessment panel.
The Federal Government undertake an audit of the scheme in areas which are perceived and known to be “rorting” existing NDIS funding and supports-to stamp out any perceptions or practices which are adversely impacting the broader NDIS community;
That the Federal Government in consultation with disability groups and disability advocates develop other proposals (alternate to IAs) and models which deliver greater equity, transparency and cost efficiency to the provision of the NDIS.

In the advent that Independent Assessors are introduced: 4) That NDIS Users from the Duchenne and Becker community be given the opportunity to choose between the current status quo or the use of Independent Assessors;

That NDIS Users from the Duchenne and Becker community have the right to choose the particular IA (and company) to undertake any assessment consistent with their rights to empowerment, self-determination and inclusion (and the objects of the NDIS Act);
That a pool of IAs be trained and skilled in rare conditions such as Duchenne and Becker muscular dystrophy;
That the Independent Assessment process be informed and guided by the reports and advice of other health professionals who may be working with Duchenne and Becker families and NDIS Users and have established relations and understanding of specific issues and needs;
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That an accessible, transparent and expeditious appeals process be established to allow NDIS Users from the Duchenne, Becker and broader disability community to appeal and review the outcome of the Independent Assessment process;
That extensive consultation and feedback mechanisms be established between the Duchenne and Becker community and the NDIA to ensure that issues arising from the advent of IAs and the independent assessment process are identified and addressed as soon as practicable;
That the Federal Government ensure that the funding for IAs does not come at the cost of existing NDIS funding and supports -that a separate bucket of funding is established for IAs which is in addition to the current NDIS funding allocation and which ensures that IAs are properly trained, equipped and resourced.
That additional funding be made available to those Duchenne and Becker families living in regional, rural and remote areas to ensure they have access to the same quality of IA’s as community members who reside in the major capital cities.
That the Federal Government ensure a major communication exercise is undertaken with the Duchenne and Becker community to explain the assessment framework and assessment tools to be utilised in independent assessments- with further consultation to occur with the community and health professionals who deal extensively with these conditions, over any changes which may need to be made to these instruments.
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BIBLIOGRAPHY

McKell Institute “Living with Duchenne and Becker in Australia. Supporting Families Waiting for A Cure”
Sydney Morning Herald “NDIS needs reform but flawed assessment model needs more work” 22/2/2021.
National Disability Insurance Scheme Act 2013 Part 2 Objects and Principles
Sydney Morning Herald “Leaked Laws reveal plan to kick Australians off the $22 billion NDIS”.
Sydney Morning Herald “Specious approach to reform a threat to NDIS consensus”.

Save Our Sons Duchenne Foundation 22 March 2021

ATTACHMENT ONE:

Consultation Questions for Federal Inquiry into Use of Independent Assessors to determine NDIS Eligibility.

What do you think of the Federal Government’s proposal to introduce Independent Assessments to determine functional capacity for NDIS eligibility?
Do you have any concerns about the use of Independent Assessors to undertake the assessment of functional capacity? Explain
The Government claims that Independent Assessment will make for a more transparent, fair, less costly and equitable system. Would you agree with this position and do you see benefits with the new system?
How do you currently organise access to NDIS support? What are the current benefits and disadvantages of this?

Do you have any comments/concerns relating to the independence, qualifications, training, expertise and quality assurance of assessors?

Do you have any comments/concerns relating to the appropriateness of independent assessors and the independent assessment process for young people with Duchenne muscular dystrophy?
Do you think there will be sufficient opportunity to review or challenge outcomes of independent assessments?
Do you have any comments/concerns about the proposed assessment tools for use in independent assessments to determine plan funding?
Do you have any comments/ concerns about the implications of independent assessments for NDIS planning, including decisions related to funding reasonable and necessary supports?

Do you have any alternate suggestions/improvements for determining access and eligibility to the NDIS?

VIDEO ATTACHMENTS:

“6 of 9”

The following 45 minute documentary was made as a lasting gift for his family by Martin Dix a Melbourne born and raised film maker residing in Los Angeles. It is the story of Martin’s brother Kieran who suffered from Duchenne muscular dystrophy and passed away some years ago.

When COVID 19 struck in the US, Martin finally found the opportunity to edit over 40 hours of archival footage of his brother Kieran’s life – footage which had been left stored away for many years. What he finally produced is a moving documentary which documents both the lived experience of Duchenne for those who suffer directly from it, but also the huge emotional and personal impacts for those who care and love someone with the disease – in this case, Martin’s seven other brothers and his mum and dad.

SOSDF feels honoured that Martin wanted our organisation to use this film as part of our advocacy work and on that basis, we are privileged to be sharing this with members the “Standing Committee”. https://vimeo.com/427928501

SOSDF YouTube Documentary

The second video is an 8 minute YouTube produced by Save our Sons Duchenne Foundation which gives a brief overview of Duchenne muscular dystrophy and the work of Save our Sons in finding a lasting cure to this condition. https://www.youtube.com/watch?v=GcI7od9fqxs

Submission to the Federal Parliamentary Joint Standing Committee on the National Disability Insurance Scheme (NDIS) – Inquiry into the Use of Independent Assessors.

Save Our Sons Duchenne Foundation (SOSDF)

Submission to the Federal Parliamentary Joint Standing Committee on the National Disability Insurance Scheme (NDIS) – Inquiry into the Use of Independent Assessors.

CONTENTS:

Executive Summary

Who We Are?

SOSDF Consultation Process:

Submission structure:

SOSDF Responses to the Terms of Reference:

A. The development, modelling, reasons and justifications for the introduction of independent assessments into the NDIS.

B. The human and financial resources needed to effectively implement independent assessment:

C. The independence, qualifications, training, expertise and quality assurance of assessors:

STOP PRESS!!!!!

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

“6 of 9”

SOSDF YouTube Documentary