Fighting for 24-Hour Care: Strategies for Maintaining Essential NDIS Support

Fighting for 24-Hour Care: Strategies for Maintaining Essential NDIS Support

Navigating the NDIS to secure the support you or your loved one needs can feel like an uphill battle, especially when it comes to accessing and maintaining 24-hour care. The importance of continuous support for Participants with complex needs cannot be overstated. This blog post aims to provide practical strategies and insights to help you advocate effectively for 24-hour care within your NDIS Plan. We understand that changes within the NDIS can be concerning, particularly concerning plan funding. It's crucial to stay informed and understand how these changes might affect your support. See our complete ndis-plan-cuts-and-changes-in-2026-impacts-on-participants-and-families guide for more information.

Key NDIS Considerations for 24-Hour Care

Securing 24-hour care through the NDIS often falls under Supported Independent Living (SIL) funding, which is part of your Home and Living supports. This funding is designed to provide Participants with the assistance they need to live as independently as possible. It’s important to understand that the NDIS’s focus is increasingly on building capacity and fostering independence. This doesn't mean that 24-hour support is unavailable, but rather that the NDIA will carefully assess the level of support needed to achieve these goals.

Here are some crucial considerations when advocating for 24-hour care:

• Understanding SIL Funding: SIL funding covers the cost of support staff to provide assistance with daily living tasks in a shared living environment or, in some cases, an individual's home. The NDIA uses a "Roster of Care" (RoC) to determine the level of funding required. This involves a detailed breakdown of the support required throughout the day and night.
• Demonstrating Need: You must clearly demonstrate why 24-hour support is essential. This requires providing comprehensive evidence of the Participant's needs, including:
  • Medical Reports: Detailed reports from doctors, specialists, and other allied health professionals outlining the Participant's medical conditions, disabilities, and support requirements.
  • Functional Assessments: Assessments from occupational therapists and other relevant professionals detailing the Participant's functional abilities and limitations.
  • Behavioral Support Plans: If the Participant has behavioral challenges, a comprehensive behavior support plan is crucial.
  • Incident Reports: Documented evidence of incidents that demonstrate the need for constant supervision and support.
• Active Night vs. Sleepover Support: Be clear about the type of overnight support required. "Active night" support means a Support Worker is awake and actively providing assistance throughout the night. "Sleepover" support means a Support Worker is present in the home and available to provide assistance if needed. The level of funding will differ significantly depending on the type of overnight support required.
• Clinical Oversight: For Participants with complex medical needs, clinical oversight is essential. This means having a Registered Nurse or other qualified healthcare professional involved in the planning and delivery of support. A nursing-led approach ensures that support is delivered with clinical precision.
• The Importance of Person-Centred Support: Emphasize that the requested 24-hour support is not just about supervision but about enabling the Participant to achieve their goals and live a fulfilling life. The support model, whether it's continuous or periodic, should align with the Participant's needs, preferences, and aspirations. Remember, under the NDIS framework, home and living supports are about fostering independence and building capacity.
• Consider the alternatives: While 24/7 support might feel essential, consider if there are alternative ways to achieve the same outcome, such as periodic support with assistive technology. The NDIA is increasingly looking at how technology can reduce reliance on human support.

Practical Steps to Advocate for 24-Hour Care

Here are some practical steps you can take to advocate effectively for 24-hour care:

1. Gather Comprehensive Evidence: Collect all relevant documentation, including medical reports, functional assessments, behavior support plans, and incident reports. Ensure that the evidence clearly demonstrates the Participant's needs and the risks associated with not having 24-hour support.
2. Prepare a Detailed Roster of Care (RoC): Work with your Support Coordinator or Plan Manager to develop a detailed RoC that outlines the specific support required throughout the day and night. This should include the type of support, the duration of support, and the qualifications of the Support Worker.
3. Engage with Professionals: Work closely with allied health professionals, such as occupational therapists, psychologists, and nurses, to obtain their expert opinions and recommendations. Their reports can provide valuable evidence to support your case.
4. Attend Planning Meetings Prepared: Be prepared to clearly articulate the Participant's needs and explain why 24-hour support is essential. Bring all relevant documentation and be ready to answer questions from the NDIA planner.
5. Seek Support from an Advocate: Consider engaging an independent NDIS advocate to assist you with the planning process. An advocate can provide expert advice, help you navigate the NDIS system, and advocate on your behalf.
6. Understand Your Rights: Familiarize yourself with your rights under the NDIS Act and the NDIS Rules. This will empower you to advocate effectively for the support you need.
7. Internal Review and Appeals: If your request for 24-hour care is denied, you have the right to request an internal review of the decision. If the internal review is unsuccessful, you can appeal to the Administrative Appeals Tribunal (AAT).
8. Focus on Capacity Building: Highlight how the 24-hour support will contribute to the Participant's capacity building and independence in the long term. Even with 24/7 support, there are opportunities to promote skill development and increase autonomy.

Conclusion

Fighting for 24-hour care within the NDIS can be a challenging process, but it is possible with the right strategies and support. By understanding the NDIS requirements, gathering comprehensive evidence, and advocating effectively, you can increase your chances of securing the support you or your loved one needs to live a fulfilling life. Remember to focus on the Participant's individual needs, preferences, and goals, and to emphasize the importance of person-centred support. Don't hesitate to seek assistance from NDIS advocates, support coordinators, and other professionals who can help you navigate the NDIS system. While the NDIS is evolving, continuous support remains a critical need for many Participants, and it is important to advocate strongly to ensure those needs are met.