“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 several chronic pain conditions.
“Application denied” these words are all too familiar for consumers with chronic pain and chronic pain related disability. This is a strong theme reported to us by our consumers who have attempted to apply for access to the National Disability Insurance Scheme (NDIS). We have been overwhelmed with the quantity of responses and the level of frustration and despair with the NDIS. What this tells us is that the NDIS is not working for people with chronic pain.
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.”[i]
Painaustralia has provided a submission to the Disability Royal Commission. As part of the process, we received responses from over 100 consumers with chronic pain highlighting that even the initial process of application to the NDIS, let alone the ongoing complexity of being accepted, has become a source of enormous frustration and fear.
The fundamental barrier stems from the NDIS interpretation that chronic pain is not considered an ‘eligible’ disability, even when the condition is supported by conclusive evidence of disability from medical professionals. Continual rejection by the NDIS leads to consumers being overwhelmed and scared to even apply. Consumers have told us they believe they are being discriminated against.
“The NDIS was set up to support those with a disability, yet it discriminates quite a bit towards a large number of us who are legitimately disabled, leaving us in a vulnerable situation, especially if you require assistance with daily living tasks, such as home 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.
This frustration and fear is magnified by several bureaucratic issues such as extended wait times, inappropriate questions and a lack of sensitivity to the consumer’s needs.
Chronic pain conditions are responsible for the 2nd largest burden of disability[i], and the issues of violence, abuse, neglect and exploitation of people with Disability is one that is of significant importance to us at Painaustralia.
Today there are approximately 3.37 million Australians living with chronic pain which impacts every facet of their lives. 1.45 million also live with depression and anxiety. Of these individuals, 10 percent will have severe disability and dysfunction due to their chronic pain conditions.[ii]
Chronic pain is closely associated with markers of social disadvantage, such as lower levels of completed education, receiving a disability or unemployment benefit and being unemployed for health reasons.
The lack of awareness and support means many Australians with chronic pain are falling through the cracks of our country’s health and disability support systems. Treatment of chronic pain requires early intervention, support and multidisciplinary care. Unfortunately, individuals living with chronic pain and related disability are often left to fend for themselves. The psychological and personal toll this has cannot be underestimated.
[i] 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
[ii] Pain and Disability: Clinical, Behavioral, and Public Policy Perspectives. Institute of Medicine (US) Committee on Pain, Disability, and Chronic Illness Behavior; Osterweis M, Kleinman A, Mechanic D, editors. Washington (DC): National Academies Press (US); 1987.
“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.
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 discriminated against. It also leaves them without fundamental financial support at a time when they most need it.
“I live with chronic lower back pain. I have degenerative disc disease. Also, chronic arthritic pain. I am 56 years old. 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.
Painaustralia recommends that tailored support be included and provided to consumers to help them address the requirements of the application process. Prioritising pain and pain management in health and disability policy would significantly reduce the burden of disability associated with chronic pain.
Chronic pain is a disease in its own right, associated with significant comorbidities such as mental health and disability. The World Health Organisation (WHO) has recognised this and adopted a clear definition of chronic pain, the ICD-11. This definition has been devised by the International Association for the Study of Pain (IASP) around diagnosis, classification and appropriate services.
Our consumers want to be treated fairly and have access to services that adequately meet their disability needs. Pain has a devastating impact on individuals, their families and society as whole. Instead of being in denial of the problem, and discriminating against people with chronic pain, the NDIS should be part of the solution.