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I RECENTLY attended the Primary Health Care Research and Information Service conference in Brisbane, and was surprised that at Australia’s premier forum on primary health care (PHC) there was not one presentation on the National Disability Insurance Scheme (NDIS) and the impact of its rollout on the health system.
Australia is experiencing an unprecedented, once-in-a-lifetime, national reform with the implementation of the NDIS, yet at this conference there was no reference to it at all. We heard about the Health Care Homes initiative, which is also undoubtedly a major reform (although not on the scale of the NDIS), but there was no critical analysis of the intersections between the PHC system, Health Care Homes and the NDIS.
I understand that the NDIS is not a health scheme, and that in fact it specifically excludes health conditions; yet there are clear intersections with the health system at many points, particularly with its provision of funding for the support, services and equipment that people with disability require to meet their functional needs. I wonder why, more generally, there is such a dearth of research on, and critical analysis of, the effects of the NDIS on the health system. After all, coordination between the NDIS and the health system is required at all levels if we are to see improved health outcomes and quality of life.
As a health services researcher, evaluator and a mother of a child with a disability, I would like to share some early personal experiences on this intersection (or possibly gaps) between the health system and the NDIS. In doing so, I will identify a number of areas for action that I believe the government needs to address, and a call to arms for those interested in systems thinking.
I recently attended my daughter’s first NDIS planning meeting – a meeting that is held to identify her goals and support needs, with funding then allocated to help her achieve these goals. She is 16 years old and has Down syndrome and various health conditions, including intellectual disability, a cardiac condition, vision impairment, hearing impairment and alopecia. Her NDIS planner went to substantial effort in documenting which of these conditions are linked to her disability and which could be unrelated. It is on reflection and after more reading that I can see that what they were trying to ascertain was what is the responsibility of the health care system and what is the responsibility of the NDIS. In other words, they were checking which system had responsibility and which should bear the cost of different aspects of care. They were clearly alert to the potential for cost shifting.
Our GP, who currently manages my daughter’s care, was not involved in the planning session, nor will be sent any documentation of the agreed plan. With GPs being left out of a major part of planning and care for people with disability, how does the NDIS model fit with primary health care in Australia? According to the Royal Australian College of General Practitioners, “general practice provides person centred, continuing, comprehensive and coordinated whole person health care to individuals and families in their communities”. This will no longer be the case for aspects of care that are the responsibility of the NDIS. GPs were previously seen as the central point of coordination of care for people with a disability, and now it seems that GPs will be coordinating care for people with a chronic illness or aged care only.
What happens for people with a disability and a chronic illness? Who coordinates their care and what is the role of GPs in this situation?
I want to make it clear that I am very supportive of the NDIS as a way to enable people with a disability to have choice and to pay for the services and supports that best suit them. I am calling for some critical analysis and evaluation to ensure we integrate the NDIS and the health system. Neither the NDIS nor primary care can act in isolation and there is a need for integration. Rather than seeing my daughter’s care as being person-centred and holistic, there is a risk that we are creating silos of care by separating out disability and health conditions. We need both the NDIS and primary care to come together, to work together, to ensure key needs are managed in a coordinated way.
A call to action:
- There is a risk of people falling through the cracks because of potential cost shifting between the NDIS and the health system.
- The NDIS and the health system reside in different government departments (Social Services and Health respectively). There is a need to build rigorous system-level evaluations and to enhance communication channels between departments.
- Coordination of care between GPs and NDIS service providers is needed to ensure that information is shared to improve patient outcomes and to avoid fragmentation of care.
- The funding model needs to be evaluated to ensure that there is reasonable access for people who do not have NDIS funding or who rely on Medicare-funded visits (eg, people with a chronic disease). The NDIS pays a much higher rate to allied health providers than Medicare-rebated or privately paid services, so there will be the temptation to prioritise NDIS patients to the detriment of others, particularly given the shortage of allied health providers – especially in rural areas.
- Excessive demand on allied health services will be exacerbated with the additional need for their services by patients who will now have access to funding to pay them. There is a need to look at bolstering training of allied health professionals to meet the demands.
Jodie Bailie is a research fellow (evaluation) based at the University of Sydney’s Centre for Rural Health, North Coast. She is the mother of three children – one of whom participates in the NDIS.
Ms Bailie would like to thank Helen Fisher, the director of roundsquared, a social purpose organisation supporting people in the NDIS, for her review and comments on this article. Previously, Helen Fisher was the CEO of Southern NSW Primary Health Network. She is the mother of two daughters who are participants in the NDIS.
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NDIS participants suffer chronic and severe illness at a much higher rate than the general population, from an earlier age and frequently with greater associated cognitive, social and financial disadvantage. With research in 2022 showing the health system failing even the most able sufferers of chronic health problems, how much worse is it for disabled patients? The recent emergence of independent patient advocates has shown they deliver better outcomes, fewer hospital bounce-backs and better case management (neither complex care or case management are remunerated to GPs by Medicare). It’s time to reduce the disadvantage that the most vulnerable in the community face when they are navigating the health system by funding patient advocacy within the NDIS (and potentially within Medicare).
Personally as a disabled person, I am very glad the NDIS is not part of the health system.
The major impact of my disability (Secondary Progressive MS) is due to social barriers rather than the actual disease.
By having the NDIS focus on removing and reducing those barriers through better equipment, adequate support and relevant access to allied health my life will improve considerably. These things don’t come under a GP’s remit.
I will still have access to my GP, neuro and other medical specialists that I see through the Medicare system.
And as usual I will let them know of how my condition is impacting my life.
But now thanks to the NDIS I have access to a specialised area to offer me the supports I need to live my life.
Not everything to do with being disabled is medical and I’m extremely relieved to see us moving from the medical model of disability to the social model, which is in keeping with modern thinking in disability.
I find it negligent that the people who are approving and wiriting the plans seem to have none or little idea what the disabilities are and what issues may arise. I find it negliable that support documentation that is supplied by person/carers/family members are not being read, or submitted, or is it because they are not submitting what the actual needs are therefore they don’t believe they need to submit the documents. For example, the ECEI who did my daughters plan had been working with her for almost two years due to her vision and intellectual delay, however they omitted vision help and equipment, plus the severity of her delay. I have had to fight for her through three reviews now, this is stressful, time consuming and taking my time away from her siblings, which is ultimately causing issues. This needs to be changed immediately.
Unfortunately all these government schemes dreamed up with the best of intentions become so bureaucratic and complex that no-one really understands the complexity – basically it comes down to where does one get some money for the government to help the disabled one of the family ? – BUT no one really knows.
There is no leadership on processes. It is like an orchestra trying to play in a concert but each group of musicians are playing their own version . There is no conductor.
I predict that it will consume so much money that costs will generally be capped and the disabled families will end up in greater hardship in the near future. As government now taxes [levies] me for what I used to donate monetarily and in time and effort my commercial company and I have ceased donations to all charities, let the government provide- and businesses are following suit. Donations are harder to come by for charities most of whom ran on volunteers and were cost effective as a result.
Getting doctors involved is an impediment – they might know something about the medical conditions.
I am a GP who runs a health service specifically for people with intellectual disability. We started a privately run service in Adelaide as our positions in the state government run disability health clinic were terminated because of NDIS and cost shifting. In defence of fellow GPs, the Medicare system does not support long complex consults and unfortunately all GPs are running a business, so the bottom line is important. Most GPs have no training in disability health and have limited options for specialist referral. I believe we need the opportunity to collaborate with NDIS, but have our own specialty in ID so that we can support and educate all medical professionals. GPs can’t be expected to know everything and ALL aspects of medicine regardless of specialty has advanced, it is hard to keep up.
My (quite extensive) experience is that GP’s are not interested in finding out about the NDIS, nor in coordinating care.
The NdIs is also a worthy attempt to escape the medical Model of disability (fix the person who is broken) to the social model of disability (fix the environment and attitudes the person is not broken).
If we made GP’s the centre of the ndis care it would be terrible. GP’s need to be informed and part of the picture, but their lack of interest, energy and time is remarkable.
I run information sessions about the ndis for a huge range of professionals, families and people with disability. GP’s have shown the least interest with rehab professionals the only ones making an effort to attend a session (the exception being GP’s who are parents of children with disability), and even then their only focus was “how quick can we get them into ndis and home and stop the bed blockers”. Lovely.
How does it work if my child is on a GP Care Plan and we use our 5 visits a year to Speech Therapist but we also have funding for Speech through NDIS. How do we coordinate these services? Is the NDIS funded services only to be used after I have used the maximum of speech services through the GPMP? Will the same speech therapist see my child? The GP gets a report on progress through the GPMP visits but not through NDIS visits? Am I the care coordinator to navigate this for my child, and I am stretched already? So many more silos of care. The GP should at least be given a copy of the NDIS Plan.
I agree! I think the health our our son cannot be seperated from his development, especially when the typical symptoms of Down syndrome mirror hypothyroidism! His unique biochemistry needs to be addressed, as this impacts his development in so many ways.
Thank you for your thoughts. As a Support Coordinator, I find it really important to advise all parties involved in a participants care what is happening. I send regular emails to Clinical Managers, family members or guardian that are consented to share information with, and GP’s who want to be kept in the loop. Believe it or not, there have been a couple who have made it very hard to share information with, and was told by the receptionist of one that the doctor ‘wasn’t really interested in anything NDIS related’, very odd. I can assure you this this is the minority, and most are more than pleased that their patients are being well supported. As you pointed out, getting your head around a plan can be difficult, and am always willing to sit and explain what each section funds in a more practical way.
I find it hard to imagine how GPs would even cope with NDIS at the moment as I find GPs do not understand NDIS ( along with most of Australia including NDIA, LACs & providers). NDIS is so confusing as a service provider working with NDIS there is no one size fits all. I find myself on the phone daily with NDIA trying to sort out plans, the portal, participants funding, etc etc. It is very time consuming & often confusing. There is vast variance depending on who you talk to & nobody gives the same information. If GPs were to intergrate this model they would not be completing 15 minute consults they would be extended out to 30 minutes minimum & that’s just to get through to NDIS . I agree GPs should see participants plans but these can be shown to GPs by participants. Getting your head around a plan is another issue as some are complex especially Core which is flexible & open to interpretation depending on the support coordinator, LAC, plan manager & individual.
I work with people who have younger onset dementia and those eligible for NDIS are getting plans with potential to make quite an improvement in their q of l.
The evidence is overwhelming that person centered, integrated and coordinated care improves QoL and reduces health expenditure. Disease or problem centered care increases health costs and reduces health outcomes. (ref Barbara Starfield) We don’t need more research. We need the authorities to understand evidence and apply it. Unfortunately, services are often commercially driven and ‘silos’ reduce competition. I am sure there is some business research supporting this but I am a health researcher. My husband passed away peacefully in palliative care in May. His death certificate stated cause of death, sepsis. I had taken him home from an acute surgical ward after 3 weeks of misery with hospital acquired MRSA septicaemia and nursing care that was mainly hospital centered. His diagnosis of dementia, (a progressive incurable disease that is now the second contributing cause of death in Australia), meant that he did not qualify for transitional care after his initial 3 month admission in 2015 for cancer surgery. I was told ‘he would not get better so he does not qualify’. From 2015 to 2017 we completed an extensive ‘bucket list’ including a cruise and the ‘India Pacific’ from Perth to Sydney. It seemed that he died cognitively more intact than some of his health care providers. Yes, his brain was not as good as it used to be when he was employed as a nuclear chemist in UK Aldermaston making nuclear bombs. But the cognitive improvement despite physical decline leave many happy memories from his final 2 years. We were fortunate I could work 7 days a week to pay for help with care. Our health system could be more efficient if we applied evidence rather than repeating past mistakes. Person-centered care is the answer and splitting people into disabilities and disease categories for care (NDIS and Health systems resp) will only increase costs and reduce health outcomes for most people. NDIS may see some of our disabled better off. We do not know how things will work out for disabled with ongoing treatable medical conditions who will be managed under 2 separate systems.
It is VITAL to remove the “wall” between social care (NDIS) and Health Care services – there is a wall that support silo mentality. The health care of vulnerable people is and will sadly continue to be compromised if this wall isn’t removed. I too am passionate about the integration of social / health care – building collaborative teams between all people who support people with disabilities. My brother has a disability & rare genetic disease and sadly I have watched & wondered why this collaboration doesn’t happen already, it just seems common sense to me. Support workers in the disability sector are not highly skilled and I really feel we expect them to the “quasi health care providers” without training them adequately.
I said this several years ago – see disability health networks western australia
I think it would be a good idea to have a Dr based conferance to discuss and integrate services better