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Advocacy efforts lead to new NDIA Priority Access Application Pathway

Posted on by Maria

In October last year, Palliative Care NSW and the NSW / ACT branch of Palliative Care Social Workers Australia (PCSWA) joined forces in NSW to actively support local and national advocacy, led by Palliative Care Australia and other like-minded organisations (Read original story HERE). These advocacy efforts highlighted he challenges for those under 65 living with life-limiting conditions who required assistance with daily living, functional and other basic non-clinical support to remain at home or in the community, but who were experiencing significant issues in accessing that support from the NDIS.

The National Disability Agency (NDIA) has now acknowledged that individuals with terminal illnesses and disabilities are experiencing gaps in health and community services. The NDIA has provided Palliative Care Australia (PCA) and the peak bodies across the country with the following information on a new Priority Access Application Pathway:

The NDIA is committed to delivering a positive experience to our more than 646,000 participants, their families, carers and the wider disability community. The NDIA recognises that some people with terminal illness and disability are falling through the gaps in health and community services, where palliative and health care services may not be meeting their support needs arising from disability acquired or related to their illness. The NDIA wants to ensure that people with disability arising from a terminal illness have their access to the National Disability Insurance Scheme (NDIS) assessed quickly, so they can access disability related supports that can be funded within existing legislative and policy settings. 

The NDIA has made some operational changes to streamline the access and planning pathway for people with terminal illness and disability. From Wednesday April 3, 2024, we put in place a Priority Access Application Pathway for people with a terminal illness. This has enabled the NDIA to better work with all participants with terminal illnesses, and the health system, to ensure participants seeking access are prioritised for assessment of their applications. The NDIA will make a decision within 5 business days of a complete application being received, on whether a person with a terminal illness is eligible to access the NDIS for disability supports.

This priority pathway extends through to the planning process, if someone with terminal illness and disability meets access to the NDIS, they will have their first NDIS plan approved within 30 calendar days of becoming a Scheme participant.

Since the commencement of the pathway in April the team report that they have received over 130 referrals.  Of those more than 80 are new participants to the NDIS who were supported with prioritised access, with over 90 plans have been approved for participants in the pathway. 

People with terminal illness and disability who wish to apply for NDIS access through the pathway can do so via Hospital Liaison Officers if they are in hospital, the NDIS Partners in the Community (such as Local Area Coordinators) or by calling the NDIA on 1800 800 110.

This new priority pathway has been developed thanks to feedback from peak bodies who have been championing the needs of people with terminal illness and disability.

The National Disability Agency has provided us with the most common questions and answers about the above referred pathway:

My loved one needs palliative care. How do they apply to get NDIS support?

  • The health system continues to provide supports specific to palliative care.
  •  People with terminal illness and disability who wish to apply for NDIS access through the pathway can do so via Hospital Liaison Officers (if they are in hospital) or the NDIS Partners in the Community (such as Local Area Coordinators).

I have a terminal illness and have already been knocked back by the NDIS. What should I do?

  • Prospective participants can reapply for the Scheme at any time.

What is the figure of people requiring palliative care supports seeking NDIS support?

  • People requiring palliative care have applied for the NDIS in the past, however the number of such applications has significantly risen. Since June 2023, the number of people seeking to access the Scheme and disclosing terminal illness as their primary disability has doubled.
  • The NDIA does not have accurate historical data on the number of people with terminal illness and palliative care needs referred to the Agency.

The NDIA has previously stated that Health is primarily responsible for palliative patients. Does this pathway represent a change in policy?

  • The health and community services operated by states and territories remain responsible for providing palliative care to people with terminal illness, with or without associated disability.
  • The new priority pathway is to enable faster NDIS decisions for people with a terminal illness and disability who wish to test their eligibility to the Scheme. Those people who are eligible to become NDIS participants should still expect that health and community supports provided by states and territories will meet their palliative care support needs.
  • The NDIA has been working with health systems to ensure that participants’ health and disability support needs are met. Supports funded by the NDIS will complement, not replace, palliative care supports that are the responsibility of health and community services to fund.

How does the NDIS work with health systems to support people with terminal illness/palliative care needs?

  • Where a person meets the NDIS eligibility criteria the NDIA will work with the participant and the health system to ensure the person gets the correct mix of disability and palliative care supports.
  • The NDIS is designed to complement, not replace, mainstream services the states and territories provide such as the health system, which is responsible for palliative care.
  • This is to ensure the best services are provided to meet the disability and health needs related to the person’s circumstances.

Has the NDIS changed its rules around eligibility for people who have palliative care needs or have a terminal illness?

  • There has been no change to NDIS Legislation, Rules, or Policies around Scheme eligibility.
  • Access and planning decisions continue to be made in accordance with the NDIS Act.
  • This new pathway enables faster decisions for people with a terminal illness and disability.
  • NDIA continues to work with governments to ensure people are getting the right and best supports for such a difficult stage of life.

Who is responsible for supporting people with palliative care needs / people who have a terminal illness?

  • The National Palliative Care Strategy 2018, which all Health Ministers endorsed, states that palliative care should commence from the point of diagnosis of a life limiting condition.
  • There is existing legislation and policies which provide the framework for funding responsibilities between the NDIS and other service systems. Along with the NDIS Act 2013 and Rules, the Applied Principles and Tables of Support principles (APTOS) outlines what governments agreed are the responsibilities of the NDIS and other government services.
  •  As agreed between the Commonwealth and the States and Territories in 2015, palliative care remains the responsibility of Health.

Has the NDIA noticed a lack of state and territory health supports since the introduction of the NDIS?

  • An NDIS Review recommendation was to improve the systems outside of the NDIS, as the Scheme is viewed as ‘the only lifeboat in the ocean.’ The Agency recognises genuine change is needed to ensure the NDIS works for all people with disability. That’s why the NDIA is making the NDIS stronger.
  • The NDIA is committed to liaising with all levels of government to ensure the NDIS works in harmony with other Government supports. It’s important we continue to work together to support people who have a terminal illness and disability with what they need.

Breakthrough for better access to palliative care for people with disability is an article published by Palliative Care Australia which outlines more about this topic.