Access to NDIS Support in Hospital

The most recent COVID outbreaks have raised familiar concerns about one of the most complex mainstream interfaces: health and NDIS. And more specifically, what NDIS supports can a person access when they are in hospital?

At the time of writing, there were 1197 people with COVID in hospitals across Australia, including 299 people in ICUs. While we don’t know how many of those are people with disabilities or are NDIS participants, it is probably more than one. But the challenge of navigating what NDIS supports can be delivered in health settings goes well beyond COVID. It’s a problem familiar to many participants, families and providers—a person with a disability is admitted to hospital and is told that the trusted, valued and regular support that they access every day cannot be delivered in a hospital. Sometimes the reason is due to WHS concerns; sometimes it is a policy decision by the health department; sometimes it is confused by everyone about what the rules are. Whatever the reason, it is often a source of distress and frustration for everyone involved.

Why do people need NDIS support in hospital?

There are often additional challenges for people with disabilities when accessing hospital services, including the following:

• Communicating with healthcare professionals who do not know the person and their preferred (or required) communication style

• Unconscious bias and attitudes about the person’s quality of life

• Diagnostic overshadowing (where a health professional assumes that a person’s health symptoms are related to his or her disability rather than exploring alternative causes)

• Failure to understand decision-making capacity or apply supported decision-making principles

• The person requiring more complex communication or behaviour support than what is routinely available in hospitals

• A general lack of training for healthcare workers in how to support people with disabilities.

In many cases, having NDIS-funded support with a person at the hospital can help to avoid these problems. A trusted and trained support worker is likely to be able to assist with communication and identify how to best deliver support. This is potentially a win for health staff as well.

However, despite all these benefits, right now, the question of what NDIS supports can be delivered in hospitals is shrouded in confusion.

What does the Australian Department of Health say?

The fact sheets developed by the Australian Department of Health on supporting people with intellectual or developmental disability during the COVID–19 pandemic state:

It is important to ensure the person has access to their usual disability supports during hospitalisation. Involve parents, other family members and/or disability workers as much as possible. These people are likely to be familiar with the symptoms that indicate illness or that the person’s condition is deteriorating. They can also assist to manage any anxiety, confusion or stress. Conduct a detailed review of the health and disability information that comes with the person. This may contain important information about:

• What is normal for the person

• How to provide support to access health care

• Their communication preferences

• Their medical history, allergies and current medications

This makes it clear that routine disability support should be a central part of someone’s experience in hospitals. The problem is that the NDIA sees it differently.

What does the NDIA guidance say?

The NDIA is stricter about when Scheme-funded disability supports can be delivered in hospitals. Guidance provided by the NDIA attempts to explain why NDIS supports usually cannot be provided in hospitals but does not reflect the COAG Applied Principles that determine the funding responsibilities of the NDIS and other taxpayer-funded systems. The NDIA guidance states that NDIS supports can only be delivered in hospitals to train healthcare staff to support people with complex communication needs or challenging behaviours. However, the COAG Applied Principles state that any funding in a person’s NDIS Plan would continue for people with complex communication needs or challenging behaviours while accessing health services, including hospitals and in-patient facilities. That is a subtle but hugely important difference between the high-level commitment from COAG and how the NDIA is implementing that commitment in practice.

Beyond the general guidance from the NDIA, there is not much more in the way of the specifics of what supports can be delivered in hospital settings. But in practice, we think services might include support workers assisting a person to use a communication tool (like a communication board), implementing approaches from a behaviour support plan to help someone stay calm, or supporting a person to fully understand their clinical options.

The example that has been provided by the NDIA outlines a participant with cerebral palsy and nonverbal communication. It states that training can be provided to hospital staff to ensure that they are able to understand how to best communicate with the participants during their hospital stay. To be clear, even in the best of times, we do not know many hospitals that have the luxury of having staff offline to undertake such training. Moreover, with regular shift changes and potential agency staff utilised in hospitals, it is probably unrealistic to think that all healthcare workers interacting with participants in hospitals have had the appropriate training and can therefore communicate effectively with the person, let alone in 2021, in the throes of a public health emergency. This scenario also does not take into consideration the person with complex communication or behaviours of concern who requires emergency or unplanned hospital admissions, which makes it impossible for training to occur prior to admission.

There is no disputing that most participants can and should be supported in hospitals without using NDIS funds, and no one would disagree that health services are required to make reasonable adjustments to provide care and support to all Australians. This universality of quality healthcare is a key part of the National Disability Strategy, and we are 100% in support of it. What we are talking about in this article are the precise additional supports that are best provided by NDIS providers that know the person well, especially in this time of healthcare system strain. Often providers are blocked at the door, even when participants, family and guardians request additional support. We think there is scope to having more NDIS services delivered in hospital settings and that this can help maintain continuity of support in a distressing and confusing setting.

Supporting people with complex needs in hospitals requires comprehensive planning and effective communication to achieve the best health outcomes for the person and minimize any harm. And sometimes this planning and communication is best done by a support worker who knows the person well, not by a healthcare worker who has just met them and has no specific or advanced training in supporting people with their disability.

In the past (and still today), some health services have elected to use a sedative before trying person-centred approaches. Limiting the NDIS-funded support that can be delivered in hospitals does not help this approach. It’s important we blend progressing system-wide reform of the health system that raises the bar for everyone with a disability with addressing the practicality that resources are stretched in health settings. COVID has changed the landscape, and a person should be able to choose to receive specific additional support in the hospital from a person they know and trust.

So, what can providers do?

While most participants will not require significant NDIS-funded support during their hospital stay, there will be some people with complex communication issues and behaviours of concern who would benefit significantly from having people who know their support needs communicate with the nurses and other health staff. We really believe that this should be part-and-parcel of a provider’s support planning role—it is impossible to predict when someone will be admitted to hospital. So preparation—by everyone—is key. Here are some tips:

• Preparing documentation and information that supports health workers in understanding how to best support a person can be extremely helpful in both planned and emergency admissions. COVID has added to the complexity of supporting people in the hospital, so it can be reassuring for everyone to have developed a health passport or health information form.

• Many state and territory governments and peak bodies have invested in this area in recent years, including developing health passport templates, disability health strategies and inclusion plans. So, approach your local government representative and ask what is available to smooth a participant’s time in the hospital.

• Start from a position of collaboration with health staff—if you have any communication tools, support plans, supported decision-making tools, or training materials that might be useful to health staff, offer them (with the consent of the person / their guardian, of course). Practically, many nurse unit managers or other staff in leadership roles will allow NDIS-funded support to be delivered in hospitals if you can clearly demonstrate the benefit to them and the person.

• Learn the relevant operational guidelines inside and out to understand exactly the NDIA’s boundaries on what services a provider can deliver when a participant is in hospital. It is not perfect, but it is the guidance we have now, so use it to your advantage and to that of people you support. But bear in mind that public health orders often trump other documents and guidelines. We know some hospitals in Sydney have a rule of ‘no additional people at all’ now due to COVID.

• Know the resources that are out there to support you and participants. Since the first COVID outbreak in 2020, many guidelines have been created for health professionals. These can assist in conversations with healthcare managers about how NDIS support can benefit a person while they are in hospital. Some good places to start are the Australian Human Rights Commission guidelines on the rights of people with disabilities in health care during Covid, the range of fantastic resources brought together by deas, the Admission2Discharge folder resource, and the Department of Health’s COVID Hospital Companion Form for people with disabilities.

The last 18 months have seen a strain on the health system that nobody has experienced before, and this challenge has been amplified for NDIS participants. While many providers might feel that making wide-ranging changes to the health system is beyond their powers, being well prepared with information and training materials and an understanding of what NDIS support can be delivered in hospital settings is very much within scope of providers. And it can make all the difference during an unexpected admission.