Do people with multiple sclerosis receive appropriate support from the National Disability Insurance Scheme matching their level of disability? A description of disease ‘burden and societal cost in people with multiple sclerosis in Australia’ (BAC-MS)
Jeannette Lechner-Scott
A B D , Penny Reeves B , Karen Ribbons B , Bente Saugbjerg B and Rodney Lea B C
A John Hunter Hospital, Department of Neurology, New Lambton Heights, NSW 2305, Australia.
B Hunter Medical Research Institute, University of Newcastle, New Lambton Heights, NSW 2305, Australia. Email: penny.reeves@hmri.org.au; karen.ribbons@newcastle.edu.au; Bente.Saugbjerg@health.nsw.gov.au; Rodney.a.lea@gmail.com
C Queensland University of Technology, Brisbane, Qld 4000, Australia.
D Corresponding author. Email: jeannette.lechner-scott@health.nsw.gov.au
Australian Health Review 45(6) 745-752 https://doi.org/10.1071/AH21056
Submitted: 19 February 2021 Accepted: 24 May 2021 Published: 21 September 2021
Journal Compilation © AHHA 2021 Open Access CC BY-NC-ND
Abstract
Objective This study is the first to assess if the National Disability Insurance Scheme (NDIS) package allocated to people with multiple sclerosis (pwMS) is correlated with the disability level measured by standardised neurological assessment.
Methods We aimed to recruit 10 pwMS per expanded disability status score (EDSS) step, including EDSS 0 (no disability) up to 9 (bedridden), and requested information about their NDIS application. Value of their packages was compared with mobility, cognition and psychological impact.
Results Out of 186 pwMS, only 49% of all patients had an NDIS package approved. The mean values of the annual allowance were AU$30 318 for patients with mild disability, AU$38 361 for moderate disability and AU$115 113 for severe disability. There was a striking variability in packages approved, but restricted mobility seems to be the driving factor. Rejection rates were <20% in patients with mild and moderate disability and none in those with severe disability. The package value correlated with EDSS steps, cognitive impairment and physical impact, but not psychological impact.
Conclusions This is the first study to assess if NDIS packages correlate with internationally accepted disability scales. The NDIS support was correlated with disability measured by EDSS steps and cognition, but not psychological impact of the disease.
What is known about the topic? There are over 25 000 Australians living with multiple sclerosis, which is one of the most common neurological diseases leading to disability in early age. The National Disability Insurance Scheme has been introduced since 2013 to particularly assist young disabled Australians to participate in the community. Whether the approved package correlates with internationally accepted disability scores has not yet been assessed.
What does this paper add? This study is the first to correlate disability, as assessed by the Expanded Disability Severity Scale (EDSS), with the approved package value.
What are the implications for practitioners? Multiple sclerosis is a very variable disease affecting quality of life not only due to impairment of mobility, but also cognition and mental health. Although the NDIS package value was correlated with an EDSS and cognition, the psychological impact of the disease is often neglected.
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