Supporting families affected by muscular dystrophy: NDIS implementation and forecasting

24 January 2022

Save our Sons Duchenne Foundation Submission:

                To:

The Joint Standing Committee on the National Disability Insurance Scheme

Inquiry into Current Scheme Implementation and Forecasting for the National Disability Insurance Scheme

Introduction: Safeguarding the future of NDIS is critical despite rising

costs of the Scheme

The Save Our Sons Duchenne Foundation (SOSDF) thanks the Joint Standing Committee (“the Committee) on the National Disability Insurance Scheme (NDIS), for the opportunity to provide a submission to the Committee on the Inquiry (“the Inquiry) which is reviewing the current implementation and forecasting of the Scheme.

The Save Our Sons Duchenne Foundation (SOSDF) has made it a priority to respond to the various consultative processes which have been established over the past couple of years in relation to the NDIS - by either the Department of Social Services, the National Disability Insurance Agency or through Senate Inquiries..

The NDIS remains central to quality of life issues for the Duchenne and Becker muscular dystrophy community in Australia. Without a fully functioning, adequately funded and comprehensive scheme, our families would be further financially disadvantage; facing health and personal burdens; and with fewer prospects of fully integrating and participating in social and community life.

The Scheme is therefore a critical public policy initiative which warrants defending and constant vigilance. This is especially so in the context of increasing political concern about the Scheme’s growing costs and expansion and the various attempts (such as the proposal to introduce independent assessors) to rationalise components of the Scheme.

The Prime Minister for example was reported in the 1Sydney Morning Herald on May 6, 2021 (“Morrison warns that NDIS Faces Million dollar costs blow out without changes”) as stating that the scheme faced major sustainability issues and “was forecast to reach 530,000 participants in the coming years and combined with higher costs per participant the costs were likely to hit $26 billion - exceeding the $22 billion estimated at full scheme by the Productivity Commission in its 2017 review”.

Reports such as this one had followed months of prior speculation on the Scheme. See for example 2SMH on 22/2/21 “NDIS needs reform, but flawed assessment model needs more work”.

This cost dilemma was further explored by Finance commentator Alan Kohler in a recent 3New Daily article on 2 December 2021 (“The NDIS and the Coalitions tax limits are about to collide”) where he foreshadowed an almighty collision between the need to grow tax revenue to meet the growing costs of the NDIS and other public schemes such as Medicare and the Government’s pledge not to increase taxes. Writes Kohler:

“When the Mid-Year Economic and fiscal Outlook (MYEFO) is released in two weeks from today, one of the big stories is likely to be NDIS.

For a government intent on cutting tax and spending, the National Disability Insurance Scheme is a nightmare. An entirely demand- driven sacred cow the cost of which is growing at 11 per cent per annum, compound.

And the MYEFO statement in mid-December will likely confirm that the cost blowout is accelerating.”

With a Federal election looming in the first half of 2022, it therefore becomes extremely difficult (albeit critical) to “take the politics out” of the Scheme implementation and forecasting (to the extent that is possible). Bi-partisan support for a properly funded and resourced NDIS moving into the future, must be guaranteed -a Scheme that rare disease

1 Sydney Morning Herald May 6, 2021 2 Sydney Morning Herald February 22, 2021 3 New Daily December 2, 2021, 6am

communities like the Duchenne and Becker community, can be justifiably proud of, without fear that it will be dilutted, limited or non exisitant in the future.

On that basis, SOSDF is determined to add our voice to the many other rare disease and disability organisations who will undoubtably be contributing to this two-staged consultation process.

Finally, on questions of Scheme viability and forecasting, SOSDF is heartened and assured by previous comments made by this Committee in the final report which was produced for the Inquiry into Independent Assessments on October 2021. 4In particular comments such as those at 9.8 of this report which highlight both the importance of the Scheme and the societal returns and benefits which arise from the Scheme’s implementation:

“This committee does not take the position that access or ongoing eligibility for a world-first scheme, which has brought life-changing transformation to hundreds of thousands of participants and their families, should ever be denied to people with disability who meet the criteria for accessing the scheme under the Act. The committee also does not agree that overall plan funding should be reduced so long as those plans have been determined to be reasonable and necessary. After seeing the progress and positive benefits achieved under the scheme, it is crucial to avoid returning to a system that would leave people with disability without the supports that they need. This is not a controversial position; support for the NDIS is bipartisan, spread across ideological divides and shared across Australian society, because the benefits the NDIS brings to Australia as a whole are substantial and meaningful.”

Submission structure:

This submission will not attempt to address all of the Inquiry Terms of reference (TOR) as they are far reaching and cover diverse areas (e.g., financial and actuarial modelling) where we do not have sufficient expertise/knowledge. Rather, we will be making a few broad comments which are going to those TORs which were seen as most relevant to our community.

These comments have been formulated following a consultation with interested members of our community.

4 Joint Standing Committee of the NDIS: Independent Assessments October 2021 Page 137.

Who We Are?

The Save Our Sons Duchenne Foundation is the peak body representing the Duchenne (DMD) and Becker (BMD) muscular dystrophy community in Australia. DMD and BMD are genetic and progressive muscle wasting conditions which affect 1 in every 3,500 boys and rare girls in this country. These conditions result in the loss of ambulation (typically at a very young age) and the continued decline in all muscle usage until sadly, untimely and premature death results.

Our organisation which has been in existence for over 13 years, is battling to find a cure for this debilitating and terrible condition. SOSDF has subsequently been instrumental in funding clinical trials, leading research projects and a neuromuscular and clinical nurse’s program at several children’s hospitals across Australia. In addition, the organisation develops a range of community programs/resources and is actively undertaking systemic advocacy work on behalf of the community we are representing.

Save Our Sons Duchenne Foundation has established a range of innovative fundraising and marketing events which aim to not only raise money to fund nurses, clinical trail staff, quality of life/community initiatives and research, but also, to raise community awareness of the Duchenne and Becker conditions.

For more information on SOSDF and Duchenne and Becker muscular dystrophy please refer to our website at www.saveoursons.org.au.

Confirming the importance of NDIS to our community:

As already highlighted, appropriate and efficient access to the financial support and assistance of the National Disability Insurance Scheme (NDIS) is critical to the life chances and quality of life prospects of young people and their 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 (and rare girls) with this fatal condition, it has become critical to ensure that the multiple health and social costs for Duchenne and Becker families be minimised. These additional health costs were captured in the landmark McKell report 5Living with Duchenne and

5 Mc Kell Report “Living with Duchenne and Becker in Australia: Supporting Families Waiting For a Cure.”

Becker in Australia: Supporting Families Waiting for a Cure commissioned by Save Our Sons Duchenne Foundation in 2020.

According to this report, 6Duchenne 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-thirties. In addition, informal care costs total up to $630,000 in terms of reduced female participation in the workforce. However, the costs for a child living to their mid-thirties rise to $2.88 million.

Families who participated in the McKell research typically reported high out of pocket medical costs, ranging to $1800 per month.

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 or the Patient Assistant Schemes in South and Western Australia.

NDIS not only helps to defray some of these core medical costs, but the Scheme also provides essential funding in areas as diverse as assistive technologies, provision of carers, vehicle and home modifications, education and training assistance, and support for living independently etc.

The future of the NDIS is therefore of paramount importance to our community as there remain few other supports/options able to fill the gaps which are currently met under the Scheme. And while the Scheme has drawn some criticism (especially in relation to issues such as timeliness and responsiveness) the scheme continues to evolve and improve as demonstrated by the recent introduction of the Participant Service Guarantee and the increasing role of the Commonwealth Ombudsmen in monitoring Scheme implementation and service standards.

6 Mc Kell Report Page 14, 44

Terms of Reference:

a. The impact of boundaries of NDIS and non-NDIS service provision on the demand for NDIS funding, including:

i. the availability of support outside the NDIS for people with a disability (e.g., community based or Tier 2 supports), and

While the Duchenne and Becker community is an extremely resourceful and resilient one which will often go to extraordinary lengths to find the necessary supports and resources, there remains insufficient support outside the NDIS for people with DMD and BMD – this is particularly evident given the complexities of this condition which varies greatly between those who are subject to it (many DMD/BMD patients experience comorbid behavioural problems and learning difficulties including but not limited to ASD, ADHD, OCD).

Not all states/territories across Australia are resourced, in South Australia for example, there are no neuromuscular clinics or a muscular dystrophy association which can effectively connect the DMD and BMD community and deliver essential services. This is a situation largely mirrored in Tasmania and the Northern Territory. This is not to say that some very good disability services and Tier 2 supports are not in place (such as Powerchair soccer, scouts etc.) simply, that there is insufficient support outside the NDIS framework to meet the complex and changing needs of our community. Furthermore, aside from neuromuscular clinics there is very little expertise or specialist intervention and services available which are specifically targeting rare disease communities such as the Duchenne and Becker community.

The Save Our Sons Duchenne Foundation recently participated in a Queensland Parliamentary Inquiry into Social Isolation and Loneliness. As part of the consultation process for the Inquiry we spoke to several families who raised concerns about the complete lack of service provision which was appropriate to Duchenne and Becker community members (even allowing for NDIS support). These concerns are best captured by one mother of a son with Duchenne redacted who stated:

7“Loneliness and Isolation are major factors for the Duchenne and Becker community. Duchenne muscular dystrophy is a rare disease and therefore it is challenging to find members of the local community who you can relate to and feel amongst your own. It is also incredibly difficult and isolating when there are very few activities and resources that a person living with DMD can

7 Save Our Sons Duchenne Foundation to the Queensland Parliamentary Inquiry into Social Isolation and Loneliness Page 3

use and you are forced to not attend and take part in various community activities that are easily accessible and catered to for able body people or people not in a wheelchair.”

No other financial and support options are available to our community with the breadth and reach of that which is currently provided under individual NDIS plans. As stated earlier, without this support our community members would find themselves increasingly marginalised and subject to an unsustainable health and social burden.

While SOSDF recognises that the overall costs of the Scheme have grown exponentially in recent years, we nonetheless believe that this public investment to be inestimable and something which should not be the subject of ongoing political debate and controversy.

i. the future of the Information, Linkages and Capacity Building grants program

As a successful 2020-21 recipient of a Social and Community Participation grant under the ILC program, SOSDF would hope that this program has its funding base secured for many years to come. In our instance, ILC grant funding has enabled SOSDF to develop a series of materials (including resource kits and videos) which will help facilitate the movement of young men with Duchenne and Becker through key transitional points in their lives – leaving school, going to University/TAFE, getting a job and living independently. To date, this project has been an invaluable opportunity to harness the collective skills, insights and participation of those with lived experience of Duchenne and Becker in the production of shared resources which should be of lasting benefit to our wider community.

Without the option of ILC funding, it is highly unlikely that these resources could have been developed as there are few potential funding sources available which are promoting inclusion, community participation and the increased involvement of people with disabilities.

Many other innovative and important community projects and initiatives would also have fallen by the wayside without the Information, Linkages and Capacity Building grants programs – with a huge loss in social capital resulting.

The grants delivered under this program are innovative, ground-breaking and of critical importance to ensuring people with disabilities are able to break through barriers and participate more fully in the social and community life of their community.

The grants program also provides an invaluable opportunity for non-Government organisations and charities to innovate and generate projects in partnership with people with a disability, industry and a range of other stakeholders. These projects will

invariably return a “dividend” to the Government (and taxpayer) as the increased participation of people with a disability in employment, social and community life will more than offset any financial costs of the grants program.

With both the NDIS and the ILC falling under the administrative umbrella of the Department of Social Services there would also appear to be more opportunities for integrated and coordinated service provision.

b. The interfaces of NDIS service provision with other non-NDIS services provided by the States, Territories and the Commonwealth, particularly aged care, health, education and justice services

Some comment in relation to health:

In relation to health, the interface of NDIS service provision with health services is less than ideal with uncertainty around respective responsibilities commonplace. There are many examples in the health sector of individuals who are struggling to obtain appropriate and necessary services while different health providers debate who should be the primary service provider.

States one mother of a boy with Duchenne

“The reality is that many people who need health services have complex needs and would benefit from multiple service providers working collaboratively instead of trying to determine which single service will fit most of their needs. Ideally, NDIS participants would have described all of their care needs and then for each individual need they would be able to identify (either independently, or with their family/carer, plan manager or NDIA representative).which service will best support them. For some people this may be a single provider, but for others it might be , multiple service providers. However, to be most effective these service providers would need to work collaboratively and in regular communication with each other and the consumer to ensure comprehensive, holistic treatment.

Not surprisingly, the comments made by 8Rare Voices Australia (RVA) in their submission to this Inquiry resonate with SOSDF and in particular, the conclusion that the NDIS is explicitly designed to exclude mainstream health care but found that, in practice, this mean’t there were often grey areas between health and disability and these gray areas caused delay and confusion and often left participants without adequate or appropriate support. The lack of integration between providers of different types of support services means that support for

8 Rare Voices Australia Interim Submission to Joint Standing Committee on NDIS.

Australians with disability caused by a rare disease and their families and carers leads to the provision of fragmented care with significant gaps.

Save Our Sons Duchenne Foundation also supports the 9RVA Action Plan recommendations which seek to address these issues. Those recommendations being:

2.1.1.1 Establish standards for care and support that are integrated and incorporate clear pathways throughout all systems. Ensure these are informed by clinical and consumer rare disease experts and that such consultation informs policy development.

2.1.1.2 To reduce fragmented care, ensure policy meets people’s full range of needs, including health, disability and education. Support this work with a cross-jurisdictional, cross-sectoral working party.

2.1.1.3 Strengthen the National Disability Agency’s response to the nature of disability caused by rare disease that can manifest as chronic, intermittent, and often progressive.

c. The reasons for variations in plan funding between NDIS participants with similar needs including:

1. The drivers of inequity between participants living in different parts of Australia
2. Whether inconsistent decision-making by the NDIA is leading to inequitable variations in plan funding, and
3. Measures that could address any inequitable variation in plan funding

“How Can Our boys, equally paralysed and with similar goals and abilities receive such different packages? It should be very similar and the men have the self determination to use it as they see fit, be penalized for mis-use and be responsible citizens like anyone else. Instead, as usual its about who is most convincing or has access to the personnel and the funding to pay them to be convincing”

(Mother of a young man with Duchenne redacted)

The Save Our Sons Duchenne Foundation suspects there are a number of drivers leading to any inequity between participants with similar needs living in different parts

9 Rare Voices Action Plan Page 21

of Australia. In saying that, we confirm that flawed “one size fits all” Independent Assessment models are not the means to address such inequities.

The availability of health professionals and others who are able to provide comprehensive reports and advice for NDIS participant planning purposes, is obviously more restricted in regional and remote areas, where there may be fewer health professionals with specialist advice and knowledge – this would be particularly so for rare diseases such as Duchenne and Becker muscular dystrophy where the level of apwareness and knowledge of these conditions varies markedly between the city centres and the bush.

The availability of good support coordinators and local area coordinators (who are able to ensure best planning practice) may also be more restricted in regional and remote areas with funding outcomes adversely impacted as a consequence.

The importance of also having continuity of a NDIS planner with a good working knowledge of Duchenne and the issues encountered by families living outside the major metropolitan centres was reinforced during our consultation process by a family with lived experience of Duchenne who were based on a redacted. The mother in this family stated:

“My boy has had the same NDIS Planner for redacted plans. This has allowed for consistency in discussing his needs and goals. They were also from a rural area so had an understanding of travel time, distances, lack of resources and other issues relating to living in rural and remote areas and sourcing supports…..Unfortunately, we have heard many stories which are the complete opposite of ours where, multiple changes in planners occur within the same planning period so people are having to continuously follow up and revisit their discussions. Also, exhaustion and negative experiences leads people to accepting less than perfect NDIS plans as it is hard to continue to battle.”

Personal/family finances may also be factors leading to inequities in plan outcomes with some “wealthier” families more able to fund multiple specialist and allied health professional assessments and reports-whereas less well off families are unable to do this.

Duchenne and Becker muscular dystrophy are complex conditions and play out very differently for boys/young men at various stages in their lives. It is essential that all families, irrespective of financial standing and residential location have access to proper and thorough assessment processes to ensure that NDIS plans are equitable and able to properly address the needs of participants.

That said, it appears inevitable that variations in funding will still arise. Explains one mother with a son with Duchenne

“There are inevitably variations in funding based on individual needs and challenges, however, some inequities may also arise depending on the knowledge and nature of the planner and the time, energy and knowledge of the participant/their advocate. Issues with the NDIS is always a big topic of discussion in the hydrotherapy pool or on the sidelines of disability sports. There is a level of frustration with delays, inequities and the sheer amount of time that families have to devote to planning. We have found that we have better plan outcomes (ie, suitability, not just dollar amount) when we have a planner who has some experience in complex conditions, has read a little on the condition, has read the PWD file and is prepared to take the time to develop a suitable plan.”

A number of ideas have subsequently been proposed by our community to address current inequities in plan funding.

Writes one mother with a son with Duchenne:

“Where universal models of care or recognised standards of care exist for particular conditions or disabilities, these documents could be used as a reference point to determine what a person’s care needs are likely to be. This would be further supported by evidence-based research on the latest treatments or supports available to people (relevant to their specific condition or care needs). Flexibility will remain paramount because there can be considerable heterogeneity between people in their experience of the same condition/injury including differences in the type of symptoms, the severity, and, for progressive conditions, the rate of decline. It is essential that each application be assessed on its individual merits, considering each person’s actual clinical presentation and not just the average or typical presentation reported in the literature. The person’s treating health professionals, who are knowledgeable in their condition, are likely to be best placed to advise on their current care needs as well as their needs in the foreseeable future.

Related to the issue of inequitable funding and how this might be addressed is the idea of Community Visitors, similar to those used in other health services (e.g. Mental Health). These Community Visitors are independent to the service and conduct random, unannounced visits to consumers and service providers to assess how well the consumer’s needs are being met, if they are being treated fairly, equitably, and with dignity and respect, and ensure they are not being exploited, neglected, or abused. These community visitors could contact consumers (or their

guardians) to arrange a face-to-face visit with the consumer to discuss the above matters, or in situations where the consumer is not able to effectively communicate the community visitor can observe their living environment and the person’s clinical presentation as well as speak to their guardians/carers. Importantly, this process would not be designed to re-assess a person’s eligibility for already approved services, but would look to determine if the person’s care needs are being met or whether there are any service gaps, as well as ensuring the person is being cared for appropriately.”

Save Our Sons Duchenne Foundation is supportive of the suite of recommendations made by 10Rare Voices Australia in their interim submission to this Inquiry which are addressing inequities in plan funding outcomes. In particular we are supportive of standardising the use of reports from treating specialists and assistance with funding to get these reports, specialist support for rare disease candidates who do not have support networks that can assist them in completing eligibility or assessment processes and the formation of a rare disease reference group within the NDIA to ensure that systems, processes and communication within the NDIS are adapted to meet the specific needs of rare disease candidates and could provide essential linkages and expertise in eligibility, assessment and planning processes within the NDIS.

d) How the NDIS is funded, including: i. the current and future funding sources for the NDIS, ii. the division between the Commonwealth, States and Territories, and iii) the need for a pool of reserve funding.

The Save Our Sons Duchenne Foundation will make just a few broad comments going to this particular TOR.

Essentially, our community would want to ensure that the Scheme be funded, that these funding sources (taxes, levies etc.) be ringfenced from partisan politics and interference to the extent that is practical and possible. The Scheme is too important to be subject to the vagaries and “shifting winds” of our political processes and must be protected moving forward.

Much like the Medicare levy which all taxpayers contribute towards (and have continued to do so for many years), our contributions to a fully functioning and funded National Disability Insurance Scheme should be beyond reproach. Of course, this does not imply that the delivery, effectiveness and operation of the Scheme cannot be varied

10 Rare Voices Interim Submission: Current Scheme Implementation and Forecasting for the NDIS Page ¾.

or be subject to public scrutiny, rather, that the NDIS is now an essential component of our social infrastructure, whose importance (like that of Medicare), must be guaranteed for future generations to come.

In relation to current divisions between the Commonwealth and the States concerning NDIS funding, this would appear to be “fraught with danger” for the NDIS community given the fractious and politically charged nature of many Commonwealth and State relations. On the flip side however, this division doubtless helps to ensure that sufficient funding for the Scheme is shared with all parties taking some responsibility for the Scheme’s implementation. This could be important when the Commonwealth is experiencing a fiscal crisis such as during the current pandemic or during periods of economic downturn.

Again, we would stress the importance of ensuring that current funding relations between the States and the Commonwealth are ringfenced in such a manner to ensure politics and political considerations do not undermine or compromise the future of the Scheme - with issues such as the non-expenditure of funds on NDIS participants becoming irrelevant.

This (political) problem between State and the Commonwealth in relation to NDIS funds recently came to the fore in early 2020, when the Victorian and NSW State Governments both accused the Federal Government of refusing to release 11$1.7 billion dollars in NDIS funding in order to prop up a budget surplus. According to the Sydney Morning Herald report on 20 February 2020 (“States Say disabled miss out as Canberra hoards $1.7b of NDIS funding”):

“the two States say that despite a “breakthrough” agreement eight months ago, the Commonwealth has repeatedly failed to release the money which is meant to be spent on people with disabilities so they can reach their full potential, and now the funds are being withheld until after the federal budget is handed down in May”

At Save Our Sons Duchenne Foundation we would argue that there is a great need for a pool of reserve funding for the Scheme -especially in the context of an exponential growth in Scheme participation/costs and other competing fiscal pressures and priorities. Also, because political priorities do change along with the need to tackle emergent issues such as the COVID 19 pandemic, climate change etc.

11 Sydney Morning Herald February 20/2021 & February 21/2021

12Our organisation subsequently notes and welcomes the Committee’s previous report on Independent Assessments which confirms at 9.12 the importance of this reserve Fund.

The committee further wishes to focus on an area of particular concern arising from the Minister and the NDIA’s response to the question on the NDIS Reserve Fund. The committee is surprised and concerned that the NDIS Reserve Fund does not yet exist, particularly in light of the Government’s commitment to establish the Fund in multiple bilateral agreements that are already several years old. The Productivity Commission in its 2011 report explicitly emphasised the importance of a reserve to act as a buffer against the unpredictability of ‘claims and their costs’ and to avoid a ‘situation in which the Australian Government would need to inject additional funds from general revenue when there were higher than expected claim costs in any given period’

The Productivity Commission’s 2017 report further emphasised the importance of establishing a reserve fund which could help cover long-term costs of the Scheme. The committee recognises that the Government may have reasons for not implementing the NDIS Reserve Fund, but if these reasons exist they have not been shared with the committee. The committee therefore considers that the Commonwealth Government should commit to implementing the Fund as soon as practicably possible.

g) The ongoing measures to reform the scheme including:

ii) planning policy for personalised budgets and plan flexibility

While the Save Our Sons Duchenne Foundation has been broadly supportive of ongoing reform measures in relation to planning policy for personalised budgets and plan flexibility (especially the ability to vary plans more readily) our community has still raised a number of issues in relation to planning policy.

One issue goes to the proposal (under new NDIS legislation) to give the CEO of the NDIA the unilateral ability to vary plans. This is not supported and is overwhelmingly perceived by the disability sector, as disempowering people with a disability and stripping them of any control – in contravention of the key principles underpinning the Scheme and the Universal Declaration on the Rights of Persons with a Disability.

Another issue concerns a significant gap in the lack of a suitable process for handling emergency funding requests which can occur frequently with complex conditions such as Duchenne and Becker.

12 Joint Standing Committee of the NDIS: Independent Assessments October 2021 Pages 137/8

A mother with a son with Duchenne relayed to us:

“These requests are most likely to relate to the sudden, unexpected malfunction or breakage of essential equipment items (e.g. bed, wheelchair). Currently people are forced to wait weeks to months for approval of and access to funding to repair or replace essential pieces of equipment and in that time are forced to use inadequate alternatives that often cause pain and discomfort because the items are not designed to address the individual’s specific needs. In the case of wheelchair users, this can often also result in the person being forced to remain house-bound (for weeks) until their replacement wheelchair arrives. This impacts on their ability to attend school/work, it may also impact on their family/carer’s ability to attend work, and is likely to have a negative effect on their mental health, particularly if the delays in replacing the equipment are lengthy. There needs to be an emergency assessment team that is able to rapidly process emergency funding requests, ideally within 24 hours, and can facilitate payment direct to equipment/service providers as appropriate to ensure the fastest possible resolution in these situations”.

The importance of plan and budget flexibility was also stressed during our consultation process and especially because Duchenne and Becker muscular dystrophy are such complex conditions.

Explained one mother with a son with Duchenne:

“For a PWD with a progressive condition, plan flexibility is essential. As a PWD moves through major transitions, like ambulatory to non ambulatory, there are significant implications and changes in their care eg, power chair and vehicle medications. These changes can happen quickly following a fall. While we haven’t had a fall, it’s still taken over a year to apply for, have approved and now schedule vehicle modifications, meaning that our PWD is unable to use his chair in the community or school.”

Finally, for the Committee’s information we have attached a copy of a submission we prepared earlier this year to the NDIA which was written as part of a consultation process the NDIA was conducting on planning processes and budget flexibility. The submission “Planning Policy for Personalised Budgets and Plan Flexibility” sought to highlight the key planning and budget issues of our community and in the process, 13emphasised the need for the budget planning process to be full-proof, responsive, provide the flexibility required by users and their families, is cognisant and informed by future possible

13 Save our Sons Submission ““Planning Policy for Personalised Budgets and Plan Flexibility” 20 February 2021 Page 2

contingencies/needs and is developed and implemented in full consultation with families, young boys and young men.

h) Any other Related Matters

Lastly, the Save Our Sons Duchenne Foundation would briefly like to acknowledge the introduction of the Participant Service Guarantee (PSG) in the draft NDIS legislation. We believe this to be a major step forward in ensuring that the NDIA is more responsive and attuned to the needs of NDIS users.

For a community impacted by the complexities of Duchenne and Becker muscular dystrophy it is critical that NDIA service standards are high, are consistent and able to expedite issues in a timely and transparent manner. We believe the PSG will go some way to ensuring this.

The Save Our Sons Duchenne Foundation also welcomes the increased emphasis on including people with a disability in any future co-design of the Scheme.

Omicron Outbreaks

At the time of writing, the Omicron variant of Covid 19 is continuing to spike across Australia. A number of parents from our community have highlighted the delays in obtaining necessary goods and services with large numbers of key workers in isolation. Also highlighted, have been the impacts on (NDIS funded) carer availability , and the funding of rapid antigen tests through the NDIS to ensure both carers and those requiring care have the ability to regularly monitor for COVID symptions – a disease which could have devastating implications for those with DMD/BMD.

Finally, issues have also been raised about the potential for delays in plan reviews and emergency plan reviews as a consequence of the pandemic.

The Save Our Sons Duchenne Foundation would subsrequently urge the Committee to turn its attention to the implication of COVID 19 on the NDIS community when making its final report.

Conclusion

The contribution to this Inquiry by the Save Our Sons Duchenne Foundation has been made in good faith and accurately reflects the feedback we have received from families

who participated in our consultation process. We have made a few recommendations below which pick up on the concerns and ideas of our community members-some may appear naïve given political realities, but we argue they nonetheless need to be stated.

In our submission, we have consistently sought to reinforce the importance of the Scheme to our community. We are subsequently urging the Committee to reach conclusions and makes recommendations, which will ensure the Scheme flourishes well into the future.

Finally, we remain concerned that the Scheme does not become a “political football” - especially as sustainability issues continue to be the focus of policy makers. Rather, we seek that the Scheme attract overwhelming bi-partisan support and recognition as the primary policy/provision framework and intervention, which ensures communities like the Duchenne and Becker community, are able to fully participate in social and community life while having all medical/health and personal support needs met.

The Save Our Sons Duchenne Foundation and our broader community wishes the Committee well in progressing this Inquiry and we are more than prepared to contribute further should the Committee wish to communicate directly with us.

Lance Dale

Advocacy Officer

RECOMMENDATIONS:

1. That the Federal Government develop funding safeguards, measures and

   protections to ensure the continuance of a fully sustainable NDIS for many years

   to come;

2. That to the extent, which is possible and practical, a bi-partisan political position

   be reached and maintained between the Federal Government, the Federal

   Opposition and State Governments which ensures the Scheme is able to continue

   and flourish in the years ahead;

3. That the Federal Government implement the reserve funding pool for the NDIS

   as a matter of urgency;

4. That the Federal Government through the NDIA, investigate the establishment of

   a “community visitors” scheme to ensure consumer’s needs are being met, they

   are being treated fairly, equitably, and with dignity and respect, and ensure they

   are not being exploited, neglected, or abused.

5. That the Federal Government adopt the recommendations made by Rare Voices

   Australia which address inequities in plan outcomes for NDIS participants with

   the same conditions;

6. That the Information, Linkages and Capacity Building Grants program be

   expanded and maintained by the Federal Government, in recognition of the

   critical role this program plays in enhancing the inclusion of people with

   disability in community and social life;

7. That the Federal Government does not proceed with any proposal to enable the

CEO of the NDIA to unilaterally vary a participants plan;

8. That the Federal Government adopt the Rare Voices Australia recommendations

   going to improving the interface between the NDIS and the health and medical

   sectors;

9. That the Federal Government ensure that the NDIA is able to develop

   comprehensive systems and processes to ensure that emergency funding

   situations can be more readily addressed under existing NDIS plans;

BIBLIOGRAPHY

1. Sydney Morning Herald May 6, 2021

2. Sydney Morning Herald February 22, 2021

3. New Daily December 2, 2021

4. Joint Standing Committee of the NDIS: Independent Assessments October

   2021

5. Mc Kell Report “Living with Duchenne and Becker in Australia: Supporting Families Waiting For a Cure.”

6. Rare Voices Australia Interim Submission to Joint Standing Committee on NDIS.

7. Sydney Morning Herald February 20/2021 & February 21/2021

8. Rare Voices Action Plan

9. Save our Sons Submission ““Planning Policy for Personalised Budgets and Plan Flexibility” 20 February 2021

10. Save Our Sons Duchenne Foundation to the Queensland Parliamentary Inquiry into Social Isolation and Loneliness