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~ Qustralia
SUPPLEMENTARY SUBMISSION TO
ROYAL COMMISSION INTO VIOLENCE,
ABUSE, NEGLECT AND EXPLOITATION
OF PEOPLE WITH DISABILITY
MARCH 2020
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SUPPLEMENTARY SUBMISSION TO ROYAL COMMISSION INTO VIOLENCE,
ABUSE, NEGLECT AND EXPLOITATION OF PEOPLE WITH DISABILITY
INTRODUCTION
Chronic pain conditions are responsible for the largest burden of disability 1 , and the issue of violence, abuse, neglect and exploitation of people with disability is one that is of significant importance to us and our stakeholders.
There are approximately 3.37 million Australians living with chronic pain today. Without action, this number is set to rise to 5.23 million by 2050 and the burden on the economy is immense.
Most people living with chronic pain will experience a physical, mental and emotional toll. This impacts every facet of their lives. Nearly 1.45 million also live with depression and anxiety. Of these individuals, 10 percent will also live with severe disability and dysfunction due to their chronic pain conditions. 2
Chronic pain is strongly associated with markers of social disadvantage, such as lower levels of completed education, receiving a disability benefit or unemployment benefit, and being unemployed for health reasons.
Unfortunately, an ongoing lack of awareness and limited support, means many of these Australians are falling through the cracks of the country’s health and disability support systems. By not receiving the early intervention, support and multidisciplinary care they deserve, individuals living with chronic pain and related disability are left to fend for themselves. The psychological and personal toll this takes on people living with chronic pain and related disability as well as the economic burden to the community cannot be underestimated.
Following on from our submission to the Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability (the Royal Commission), Painaustralia had subsequent conversations with the National Disability Insurance Agency and with out consumers, specifically around access issues related to the National Disability Insurance Scheme (NDIS).
The response we received was overwhelming. We were contacted by over a hundred consumers who had faced significant barriers in accessing the NDIS. Our supplementary submission highlights these barriers and reiterates our recommendations for: .• thea clearprioritisationdefinitionofofchronicchronicpainpainin anddisabilitythat thepolicyAustralianand enhancedGovernmentsupportsadoptsthat theenableICD-11accessclassificationto the NDIS;of chronic pain immediately to ensure that our health and disability systems can easily diagnose, classify and provide appropriate supports and services for people living with chronic pain; and
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that people living with a disability as a result of their chronic pain are assessed effectively and provided access to services that adequately meet their disability needs.
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ACCESSING THE NATIONAL DISABILITY INSURANCE SCHEME
The National Disability Insurance Scheme (NDIS) is not meeting the needs of people living with chronic pain and related disability. The NDIS was put in place to support “people aged under 65 years with a permanent and significant disability that affects their ability to take part in everyday activities. It is also meant to work with people with a disability, and their families and carers, to identify what support they need to reach their goals in independence, health and wellbeing, involvement in the community, education and employment.” Feedback from consumers living with chronic pain indicates that this is not the case and most consumers struggle with eligibility to the NDIS, despite very significant burden of disablement and dysfunction.
"The NDIS was set u to su ort those with a disability,
leaving us in a vulnerable situation, especially if you require
assistance wit a, y ,vmg tas s, sue as ome help, personal care, etc. I know of a couple of people who
have had their services halved, one person lost home help entirely “ Consumer living with chronic pain.
We have identified three major barriers that consumers living with chronic pain experience in accessing the NDIS. The three themes are:
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People living with chronic pain are reluctant to apply to the NDIS because of the fear of being rejected. Consumers are overwhelmed by an onerous application process, creating access barriers.
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People living with chronic pain report that chronic pain is not considered an ‘eligible’ disability by the NDIS, despite conclusive evidence and support from medical professionals and international bodies.
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There are issues around consistency of applications, together with general bureaucratic red tape, including extended wait times, inappropriate questions and lack of sensitivity to the consumer. These themes were based on feedback received directly from over 100 consumers. We have selected just a few examples, however the feedback we received indicates that this is a critical issue one that requires urgent action. A comprehensive report outlining the feedback can be found at Attachment A.
ABOUT PAINAUSTRALIA
Painaustralia is the national peak body working to improve the quality of life of people living with pain, their families and carers, and to minimise the social and economic burden of pain. Members include pain and other specialists, health practitioners, health groups consumers and researchers.
Painaustralia works with our network to inform practical and strategic solutions to address this complex and widespread issue.
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People living with chronic pain are reluctant to apply to the NDIS because of the fear of being1 ■ rejected. Consumers are overwhelmed by an onerous application process, creating access barriers.
Many people responding to Painaustralia’s survey report feeling overwhelmed by the NDIS application process. Concerningly, a significant number of people with complex needs are not applying for NDIS due to the challenges of the access process.
“I have been too scared to even ask for an application, even though I received my Superannuation TPD without any issues. A-rter the way I was treated by Centre/ink to get DSP, applying for NDIS scares the hell out of me. The anxiety it creates just isn’t worth it. “ Consumer living with Chronic Pain
People with chronic pain often live with depression, anxiety and/or other mood disorders. Painaustralia’s report on the Cost of Pain in Australia (2019), prepared by Deloitte Access Economics, finds that the reported comorbidity for chronic pain and depression or anxiety is estimated at 44.6% of patients, which is within the range of estimated values from the international literature. 3
“I am scared to even try and apply. I have Scoliosis and all I seem to hear is people being rejected.” Consumer living with Chronic Pain
There is a large psychosocial element to the management of chronic pain. In fact evidence now demonstrates that medical interventions frequently cannot resolve pain completely, and there is a need for long term management approaches to chronic pain, including psychological intervention.4 The issue of mental health is an important one for Painaustralia and our members, as the comorbidity between mental and physical health problems is well documented, especially when the condition becomes chronic. Nowhere do psychiatric and medical pathologies intertwine more prominently than in pain conditions. 5
“I was told to get onto this system with my chronic disabling pain etc. I have quite a few medical problems but not sure it’s worth it. 1) I don’t know how to go about it 2) I don’t think I could mentally handle getting knocked back.” Consumer living with Chronic Pain
People living with chronic pain have indicated that they find the application process difficult and confusing with some consumers giving up because the process was too difficult. It is concerning to note that most of the responses we received highlighted the distress and anxiety consumers faced in accessing the NDIS. This can only exacerbate the impact of comorbid chronic pain and mental health problems.
“I’m too afraid to apply. Costs so much for all the specialist reports just to be declined. Support for chronic pain patients is appalling.” Consumer living with Chronic Pain
Confidence and trust in the scheme - from the perspective of participants, families and carers, advocates, service providers, and the broader community - has been substantially eroded. Understanding, accessing and navigating the NDIS has become so complicated that the scheme is inaccessible for some of the very people who need it most.
Painaustralia recommends the prioritisation of chronic pain in disability policy and enhanced supports that enable access to the NDIS.
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■ People living with chronic pain report that chronic pain is not considered an ‘eligible’ disability2 by the NDIS, despite conclusive evidence and support from medical professionals and international bodies.
Time and again we hear of how chronic pain has fundamentally changed the life trajectory of a young Australian, or imposed disability on a previously healthy older Australian.
“I have fibromyalgia and polyarthritis tried a few times to get on Centre/ink benefits, but I don’t fall in that category that allows you to get disability pension.” Consumer living with chronic pain
Perhaps most unfortunate of all is the fact that despite the high prevalence, people living with chronic pain are not recognised as living with a disability. Their ‘invisible’ condition is often ignored, leaving them misbelieved, stigmatised, isolated and subject to discrimination. It also leaves them without fundamental financial support at a time when they most need it.
“My application was denied. I have Lupus, Rheumatoid arthritis, Fibromyalgia, Chronic lower back pain, anxiety, depression and PTSD. And it was denied because my conditions apparently aren’t permanent.” Consumer living with multiple chronic pain conditions
This situation appears to be compounded by the NDIS and its treatment of chronic pain, with many consumers reporting a rejection of their application with the comments of “not permanent”, “not an approved condition” or “not functionally disabled” as a consistent theme.
“I have ankylosing spondylitis and was denied access. I was told I needed to prove my condition was ermeant which made me /au h! Access is not easy,
Consumer living with ankylosing spondylitis
“I have been approved for multiple disability. I do have lots of associated pain (Ehlers Danlos hypermobility spectrum disorder). I had to appeal to get accepted as in first documents the word ‘pain’ was mentioned…. I was told pain is not a disability. …got documents reworded but in the end was approved by a different person on the original two documents that mentioned pain!” Consumer living with Chronic Pain.
Chronic pain may or may not be a permanent condition. It is impossible to predict long term outcomes due to the nature of the condition, but this should not preclude people from basic disability support.
“NDIS denied my access request because fibromyalgia isn’t on the list of ‘approved conditions’.” Consumer living with the chronic pain condition fibromyalgia.
“Fibro/CFS is a nightmare when it comes to NDIS.” Consumer living with chronic pain
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In addition, there is prevalent sentiment that the NDIS discriminates based on particular health conditions.
“It appears that the NDIS was set up as a selective service for some, not an inclusive service for all
Consumer living with chronic pain
“I was denied early last year, I was told that ME/CFS was a medical condition, when I asked what the hell does that mean, the woman repeated herself, never mind the rest of my other conditions they totally ignored them.” Consumer living with Chronic Pain
Across Australia, many consumers living with chronic pain report their application being rejected due to their chronic pain issue not meeting the permanent and significant condition criterion. This is often despite having accessed chronic pain services for a long period of time in the community (often at high out of pocket cost) and having a formal medical diagnosis.
“I was denied initially as my pain condition - I wasn’t disabled “enough” My 2nd application went through as my mental health issues were lodged as my main complaint and pain secondary. “ Consumer living with chronic pain
Medical assessments are often expensive, and the wait lists are usually lengthy. This is particularly evident in some regional and rural communities, who do not have adequate or timely access to specialists such as pain specialists and allied health providers.
“Success is much about how you word the application and what evidence you do (and don ’t) attach to meet the criteria. And sometimes luck in who you get to assess the application.” Consumer living with Chronic Pain
The administrative burden of enrolling is also a significant barrier. The completion of an application is
dependent on a treating practitioner having a thorough understanding of the functional capacity of the person living with chronic pain. Understanding the forms, and how to complete them is an area identified as a barrier to those living with chronic pain and related comorbidities. Even where consumers do have the support of a medical practitioner, outcomes can be far from certain.
“I had a lady from - come with me to the doctor. He filled all the forms out totally supporting me as I have permanent nerve pain from a back-injury scar tissue wrapped around a nerve. Also, Reynaud’s phenomena. We sent in all medical paperwork supporting documentation. I didn’t get an interview with NDIS. They rejected my application twice saying it has to be a permanent impairment. “ Consumer living with Chronic Pain
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Once the application is rejected, most consumers decide not to seek a review the NDIA’s access decision or reapply even with medical support, and despite their treating practitioners and specialists strongly believing that they may be eligible for the NDIS. This is largely due to the stressful and protracted application process.
“I live with chronic lower back pain. I have degenerative disc disease. Also, chronic arthritic pain. My secondary problem is mental illness. I am on a myriad of medications. I have to use disability aids. I have been denied the NDIS 6 times. I have copious amounts of documentation for my claim. My doctor and allied health professionals do not understand why I have been rejected by the NDIS.” Consumer living with Chronic Pain
Learning about, and accessing, the NDIS continues to be difficult for the very people it is intended to support. These challenges are particularly pronounced for people experiencing disadvantage, isolation and additional barriers.
Measures should be adopted to simplify evidence required to support NDIS applications and provide consistency while considering the challenges of gathering evidence around complex conditions like chronic pain.
“I have lupus and pain impacts my mobility I was rejected from NDIS twice and told that I didn’t have mobility issues because I don ’t use a wheelchair. They really didn ’t understand the arthritis or pericarditis side of my condition and the impacts of that pain”Consumer living with Chronic Pain
As noted in our submission to the Royal Commission, internationally, the medical and health community is now moving to remove this ambiguity by, recognising the complexity of chronic pain and classifying it as a disease in its own right.
The World Health Organization (WHO) officially adopted the 11th revision of the International Statistical Classification of Diseases and Related Health Problems (ICD-11) in May 2019. This includes a systematic classification of clinical conditions associated with chronic pain. The new classification system is important
because it treats chronic pain as a distinct health condition and as a symptom to an underlying disease. It
also considers the intensity of pain, pain-related disability, and psychosocial factors that contribute to pain.
The ICD-11 is scheduled to come into effect in the year 2022. With the implementation of this systematic classification, ICD-11 takes a decisive step to better reflect the significance of chronic pain as a health problem of enormous epidemiological, economic, and sociological impact.
Painaustralia recommends a clear definition of chronic pain and that the Australian Government adopts the ICD-11 classification of chronic pain immediately to ensure that our health and disability systems can easily diagnose, classify and provide appropriate supports and services for people living with chronic pain.
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■ There are issues around consistency of applications, together with general bureaucratic red3 tape, including extended wait times, inappropriate questions and lack of sensitivity to the consumer.
The NDIS is a complex system, and one that is increasingly becoming more difficult for consumers to navigate. People navigating the access process often feel unclear about the steps involved and overwhelmed by the emphasis on medical evidence. The processes involved in accessing the NDIS present many barriers for people experiencing disadvantage.
“I was on disability support. It stopped for a bit coz my partner earned more money and then when I reapplied, they refused me. Questions like ‘can you hang out washing’ is stupid. When the answer is ‘yes but it really hurts and exhausts me.”’ Consumer living with Chronic Pain
From getting the form itself through to completing each step, consumers living with chronic pain report
the process is often inaccessible, intensive, invasive and long. The various systemic barriers and arbitrary distinctions between our welfare and support systems have resulted in many people with chronic pain falling through the cracks.
“I’ve been denied, have two auto immune conditions and lung disease, denied as the lung condition can be treated with a transplant.” Consumer living with Chronic Pain
People who are ineligible for the NDIS are often caught in the middle of Government funding ‘handballs’ and confusion about which system pays for what type of support.
“Yes, fought Centre/ink for DSP after it took them 2 years to assess and then reject me, then went to AAT and was awarded it. Applied to NDIS twice with the same information and documents and rejected twice” Consumer living with Chronic Pain
As noted in our submission to the Disability Royal Commission, there is a breakdown in provision of appropriate support for people living with chronic pain, with many consumers trying to access the NDIS being told their condition is ‘just a medical one’, despite the clear and ongoing burden of disability associated with their chronic pain condition.
“Mine wasn’t denied in as much as the person from NDIS who came to my home told me that it was no point applying … Kick in the guts because it was them who called me initially to tell me that I was eligible.” Consumer living with Chronic Pain
Our report developed by Deloitte Access Economics, The Cost of Pain in Australia, reveals that Chronic pain was associated with 340,384 disability adjusted life years (DALYs) in Australia in 2018, which, using the value of a statistical life year (VSLY) to enumerate DALYs in dollar terms, represents a cost of $66.1 billion. Chronic pain was estimated to be associated with 6.8% of the total burden of disease and 6.5% of total health system expenditure. Despite the huge economic impost of chronic pain and the clear and massive disability burden, people with chronic pain still do not receive adequate services and support.
“I received no help at all with the application, living in south west WA I wasn’t aware of anyone who could help me.” Consumer living with Chronic Pain
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“| was given almost no help by anyone. | was not told anyone other than my GP
would be able to give information to them and the NDIS questionnaire provided did
nothing but make me feel like | was overreacting to my personal situation because |
can sometimes do the things they were asking and sometimes can’t.”
Painaustralia recommends that people living with a disability as a result of their chronic pain are assessed effectively and provided access to services that adequately meet their disability needs.
CONCLUSION
The vision of the NDIS is to provide people with disability greater choice and control in their lives and the services they access, however the reality experienced by people living with chronic pain is usually far different. The service is falling short in providing supports for many Australians with a disability especially those with chronic pain related disability. There is an ill-defined interpretation of what constitutes a disability and the validity of medical evidence that sUpportssthe ongoing disability related to chronic pain. As a result, large sections of the Australian Community are missing Gut on.disability treatment and care they so desperately need.
It is unacceptable that consumers living with chronic pain are not recognised as having a disability.and that they now fear the whole NDIS application process. The fear of being discriminated against is a common theme. It is disappointing that NDIS, a system designed:to provide support to those living with disabilities, instead reinforces stigma and isolation around chronic pain.
The NDIS is failing consumers on multiple fronts, including people living with chronic pain. Anecdotal evidence highlights confusion and uncertainty around what constitutes a permanent or significant disability, even among the medical profession. There are large variabilities and inconsistencies around defining a disability. The onerous application process compounds the frustration and despair felt by this vulnerable cohort of consumers.
Painaustralia recommends that tailored support needs to be provided to consumers to help them understand the application process and the requirements. This should be provided in preparation for the actual assessment. Prioritising pain and pain management in health and disability policy would significantly reduce the burden of disability associated with chronic pain.
Consistent with the World Health Organisation and several Australian hospitals and health services, recognising chronic pain as a disease in its own right while understanding the relationship between mental health and other comorbidities and pain and related disability is required to improve the quality of life for many Australians impacted by these conditions who often fall between the cracks.
Measures should also be adopted to simplify the evidence required to support NDIS applications and to provide consistency while considering the challenges of gathering evidence around complex conditions like chronic pain.
Pain has a devastating impact on individuals, their families and society as whole. Addressing the significant disability burden caused by pain involves providing people living with chronic pain and related disability with the right supports, at the right time. With the right supports and services, we can significantly improve the productivity and lives of people living with pain, their families and their communities. Ultimately, we will all benefit if people living with these debilitating conditions can access disability supports and services at the earliest stages of their condition.
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REFERENCES
1 Jonathan C Hill, David GT Whitehurst, Martyn Lewis, Stirling Bryan, Kate M Dunn, Nadine E Foster, Kika
Konstantinou, Chris J Main, Elizabeth Mason, Simon Somerville, Gail Sowden, Kanchan Vohora, Elaine
M Hay. Comparison of stratified primary care management for low back pain with current best practice (STarT Back): a randomised controlled trial. The Lancet, 2011; 378 (9802): 1560 DOI: 10.1016/S0140 6736( 11 )60937-9
2 Pain and Disability: Clinical, Behavioural, and Public Policy Perspectives. Institute of Medicine (US) Com
mittee on Pain, Disability, and Chronic Illness Behavior; Osterweis M, Kleinman A, Mechanic D, editors. Washington (DC): National Academies Press (US); 1987. 3 Deloitte Access Economics 2019. Cost of Pain in Australia. Painaustralia. Canberra. 4 John A Sturgeon. Psychological therapies for the management of chronic pain. Psychol Res Behav Manag. 2014; 7: 115-124.Published online 2014 Apr 10. doi: 10.2147/PRBM.S44762 5 Gatchel. R 2009. Comorbidity of chronic pain and mental health disorders: the biopsychosocial perspec tive. Am Psych 2009.
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painaustralia Mailing address: PO Box 9406 DEAKIN ACT 2600 Phone: 02 6232 5588 Email: admin@painaustralia.org.au Website: www.painaustralia.org.au