How can families and carers get supported under the NDIS?

Empowering carers and families through the NDIS framework

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Caring for someone with disability is a deeply rewarding but also deeply challenging role. Families and carers often juggle many responsibilities—physical care, emotional support, navigating systems, and looking after their own health. The National Disability Insurance Scheme (NDIS) in Australia recognizes these challenges, and there are many ways for families and carers to access support. This article explains what supports are available under the NDIS, how to access them, and tips to ensure carers are not overlooked.

1. What is the NDIS & Who is it for

The National Disability Insurance Scheme (NDIS) is an Australian government scheme to help people with disability access the supports they need to live more independently, participate in community life, and achieve their goals. To access NDIS supports, a person must meet certain eligibility criteria involving age, residency, and disability / impairment that requires ongoing support or early intervention. While the NDIS is for participants—people with disability—families and carers play a crucial role: providing informal care, helping with daily tasks, advocating, and helping the participant use their NDIS plan. Because of this, carers themselves are considered in many parts of the NDIS system.

2. Why Carer and Family Support is Essential

Carers and families contribute significantly—not only practically (helping with daily tasks, medical appointments, behavior support etc.), but also emotionally. However, this role can be demanding. Without sufficient support:

  • Carers can experience burnout, mental health issues, and physical health problems.
  • The quality of care for the person with disability can suffer
  • Families may struggle to maintain employment or engage socially.
  • Informal care networks may weaken

    • 3. Types of Supports Available for Families and Carers under the NDIS

    Here are the main types of supports that carers and families can access under NDIS, either directly or via the participant’s plan.

    a) Respite / Short-Term Accommodation

    What it is: Respite (also called short-term accommodation) provides temporary relief for carers. It gives carers a break from their caring responsibilities, while ensuring the person with disability is looked after in safe, appropriate settings.

    How it can help:

    • Carer can rest, recharge, manage other responsibilities, and maintain their wellbeing.
    • The person with disability gets variety, social interaction, and new experiences.
    • Helps maintain family relationship balance.

    How to get it: Include respite / short-term accommodation in the NDIS participant’s plan. The plan should reflect the need for breaks for the carer. Discuss with the planner / Local Area Coordinator.

    b) Informal Supports and Sustaining Them

    What “informal supports” means: This refers to unpaid care and assistance from family, friends, community networks. It's not formal care by paid providers, but it is often crucial.

    Sustaining informal supports: NDIS planning includes assessing what informal supports exist, how sustainable they are, what strain is on carers. Based on that, the NDIA (National Disability Insurance Agency) may fund supports that help sustain these networks. For example:

    • Help with things the carer cannot do alone.
    • Community access or support to reduce isolation.
    • In-home supports during times when carers are unavailable.
    • Supports that reduce risk to carer’s health.

    c) Funding a Family Member to Provide Supports (Exceptional Cases)

    Generally, NDIS does not fund family members to provide personal care or community access supports. There are strict guidelines because of risks such as over-burdening the carer, diminishing the participant’s autonomy, or deteriorating family relationships.

    When it may happen:

    • If all other options have been exhausted.
    • When religious, cultural or participant preference demands family member provision.
    • If there is significant risk of harm or neglect to the participant otherwise.
    • When the family member is a registered provider.

    So, while possible, it is rare and requires a strong case.

    d) Capacity-building / Training / Skill Building

    Carers can benefit from:

    • Training or skills workshops (e.g., behavior support, communication strategies, managing challenging behaviors).
    • Coaching and education to build their ability to support the participant effectively.
    • Support to build their own coping skills, wellbeing, time management, etc.

    These supports may be included in the participant’s NDIS plan if justified—that is, if they help both the carer and the participant by improving outcomes.

    e) Emotional & Mental Health Supports

    Carers often need support for their own mental health:

    • Access to respite (as above) helps reduce stress.
    • Referral to counselling, peer support networks.
    • Support through government-funded programs (like Carer Gateway in Australia) specifically focused on carers’ wellbeing.

    f) Help Navigating the System

    NDIS is complex. Families and carers often need:

    • Help understanding eligibility, plan-reviews, rights and responsibilities.
    • Assistance from Local Area Coordinators (LACs) or Early Childhood Partners.
    • Support from community organizations, non-profits, advocacy groups.
    • Access to resources, workshops, forums to share experiences.
    • Sometimes just having someone to guide through the paperwork, advocate in plan meetings, or connect with providers can make a big difference.

    4. Eligibility & How to Include Carer Supports in an NDIS Plan

    Who can benefit: The person with disability (the NDIS participant) must be eligible under the scheme. Carers themselves aren’t automatically granted their own NDIS plan unless they also have a disability and meet the eligibility criteria.

    But even if carers don’t have their own plan, many supports for them are available through the participant’s plan and through other programs.

    Steps to ensure carer and family supports are included:

    • Be an active participant in the planning process.
    • Identify needs clearly: For example:
      • “I need respite for two or three days every few months because I’m becoming physically exhausted”
      • “I need support to learn behavior management strategies for my child”
      • “I need assistance connecting with peer support or counselling”
      The more concrete the request, the easier it is to justify in the plan.
    • Use evidence: Reports from doctors, allied health professionals, statements of your current workload, stress levels, or impact on mental/physical health help support applications for funding carer supports.
    • Discuss informal supports: Be transparent about what care you already provide, what you can continue, and what is not possible. This helps the NDIA understand the gap that needs funding.
    • Plan reviews: Over time, needs change. Carer strain may increase or decrease. Regular reviews (annual or more frequent as needed) are important so that supports can adjust.
    • Local Area Coordinators / Early Childhood Partners: These local agents can help you understand what supports are available locally, what is reasonable, and help advocate in plan meetings.

    5. Other Agencies and Programs That Help Carers

    Not all support must come via NDIS. Often, a combination of programs yields best outcomes. Some of these are:

    • Carer Gateway: Offers support planning, counselling, peer support, respite, advice, etc.
    • Carers Australia: National organization advocating for carers’ rights, connecting carers, providing resources.
    • Services Australia: Financial support for carers separate from NDIS.
    • Other community and non-profit organizations: Local respite services, peer support groups, counselling services, training workshops, etc.

    6. Common Challenges for Carers & Tips to Overcome Them

    Even with supports available, many families and carers face obstacles. Below are common challenges + practical tips.

    Challenge Why It Happens Tips / What Helps
    Carer burnout / mental health strain Continuous responsibility, reduced time for self-care Prioritize small breaks, schedule respite, seek peer support, and use counselling services via Carer Gateway.
    Lack of clarity about what supports are “reasonable” NDIA needs to balance cost, need, what informal carers can do Document clearly what you cannot manage, collect evidence, ask for support during plan meetings, and use advocacy services.
    Difficulty in getting family member funded to provide care Strict rules in NDIS about funding family members; must be exceptional circumstances Only pursue this when justified; ensure all guidelines are understood; explore other service providers first.
    Financial strain Costs of support, loss of work hours, additional expenses Explore Carer Payment / Allowance, check what NDIS can cover, community grants.
    Information overload / navigating the system The NDIS can be complex; many documents, terms, agencies Use Local Area Coordinator, NDIS supporting organizations, peer groups, simplify by making checklists.
    Support gaps between plan reviews Needs change, but reviews may be annual or delayed Request interim reviews when required, keep records of changes, and communicate frequently with NDIA or LAC.

    7. Recommendations & Best Practices

    Based on what carers, families, advocacy bodies, and research highlight as working well, here are recommended best practices—both for carers/families and for the NDIS system partners.

    For Carers/Families:

    • Be proactive: don’t wait until you’re completely overwhelmed before asking for help.
    • Keep records: of caregiving tasks, hours spent, stress levels, any physical/emotional health effects. Use these for plan reviews and advocacy.
    • Build your network: peer support, local carer groups, and online forums. Sharing knowledge and experience helps reduce isolation.
    • Prioritize self-care: schedule time for rest, hobbies, and health check-ups. You can’t effectively care if you burn out.
    • Seek professional help: counselling, therapy where necessary.

    For NDIS / System Actors:

    • Ensure transparency in how carer supports are considered in plans—what counts as reasonable, what evidence is required.
    • Increase availability and diversity of respite options, especially in rural or remote areas.
    • Provide accessible, clear information for carers in multiple formats; reduce bureaucracy.
    • Recognize cultural, linguistic, and special community contexts; tailor supports to them.
    • Promote early intervention both for the participant and for supporting the carer’s wellbeing.
    • Monitor and respond quickly to crisis situations where carer or family health is at risk.

    8. Conclusion

    Families and carers are the backbone of support for people with disability. The NDIS recognizes that without sustainable support for carers, the whole system struggles—and lives become harder for both the person with disability and those who care for them.

    While carers do not automatically get their own NDIS plan (unless they are themselves eligible), there are many ways for their needs to be recognized and supported—through respite, informal support, capacity building, emotional and mental health services, and help navigating the NDIS.

    If you are a carer or family member:

    • Be an active participant in the planning process.
    • Document your needs clearly.
    • Explore allied support from Carer Gateway, Carers Australia, community groups.
    • Don’t wait until you’re overwhelmed to ask for supports.
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