Navigating the NDIS, a guide for SCN2A and DEE families.

The National Disability Insurance Scheme is a federal programme that funds reasonable and necessary supports for Australians under 65 with a permanent and significant disability. It is administered by the National Disability Insurance Agency (NDIA).

Funding is tailored to each individual, your child's plan reflects their specific needs, goals, and circumstances. Funding can be used for:

• Therapies (occupational therapy, speech pathology, physiotherapy, psychology, behaviour support)
• Equipment and assistive technology (communication devices, mobility aids, specialist furniture)
• Support workers (assistance with daily personal activities, community participation)
• Early childhood supports (for children under 9, through the Early Childhood Approach)
• Capacity building (helping your child and family build skills and independence)
• Specialist support coordination (help navigating the NDIS itself)

The NDIS does not fund medical treatment, medications, or services that are the responsibility of the health system (hospital care, prescribed medications).

For most families with an SCN2A or DEE diagnosis, the disability criteria are straightforward to meet. The process still requires documentation.

Age

Under 65 at the time of application. For children under 9, the Early Childhood Approach provides a different access pathway.

Residency

Australian citizen, permanent resident, or Protected Special Category Visa holder, living in Australia.

Disability criteria

Your child must have a disability that:

• Is caused by a permanent impairment (intellectual, cognitive, neurological, sensory, physical, or psychosocial)
• Significantly affects their ability to participate in daily life
• Is likely to require support throughout their lifetime

If your child is under 9, they do not access the NDIS through the standard pathway. Instead, they enter through the Early Childhood Approach, designed to provide early support quickly, without requiring a formal NDIS plan.

• You connect with an Early Childhood partner (an organisation funded by the NDIA in your area)
• The partner assesses your child's developmental needs
• If eligible for NDIS, they help develop a plan
• If not yet eligible (or uncertain), they can still connect you with services and community supports

For families with a recent diagnosis in a young child, the Early Childhood Approach is typically the fastest route to funded supports.

Think about goals, not just diagnoses

The NDIA wants to understand what your child is working toward, not just what diagnosis they have. Frame goals around daily life: communication, mobility, participation in education, social connection, daily living skills, and family wellbeing.

Examples of goals for children with SCN2A or DEE:

• "To communicate their needs and preferences more effectively"
• "To participate in daily activities with greater independence"
• "To access the community safely with appropriate support"
• "To develop skills to maximise their potential across their lifespan"

Document your current informal supports

The NDIA takes into account the informal support provided by family members. Document the hours you spend providing care beyond what a parent of a typically developing child would provide, this is relevant to carer supports and respite funding.

Know what supports you need

Before the meeting, get written recommendations from your treating team (OT, speech, physio, psychologist) specifying the type, frequency, and rationale for the therapies they recommend. Vague recommendations lead to underfunded plans.

Request a support coordinator

For families new to the NDIS, particularly with complex needs, requesting Support Coordination funding in your plan is important. A support coordinator helps you find and connect with service providers, understand your plan, and navigate the system. Specialist Support Coordination is available for families with more complex situations.

NDIS plans are divided into three budget categories.

Not every application is approved first time. Plans are sometimes underfunded. You have options.

• Internal review, if your access request is refused, or your plan does not reflect your child's needs, request an internal review by the NDIA within 3 months. Submit new or additional supporting evidence.
• AAT review, if you are not satisfied with the internal review, apply to the Administrative Appeals Tribunal for an independent review.
• Plan review, if your plan has been approved but funding does not meet your child's needs, request an unscheduled plan review (rather than waiting for the scheduled date) if your circumstances have changed.

Get help

Navigating disputes with the NDIA is difficult. Seek help from your support coordinator, a state disability advocacy organisation, Children and Young People with Disability Australia (CYDA), or Family Advocacy.

Once your plan is approved, you have choices about how it is managed.

• Self-managed, you pay providers directly and claim reimbursement. Maximum flexibility; requires record-keeping.
• Plan-managed, a registered plan manager handles payments. You can still use unregistered providers. Recommended for most families, particularly at the start.
• NDIA-managed, the NDIA pays providers directly. You can only use NDIS-registered providers. Less flexible.

Most families with children with complex needs find plan management the most practical approach, it combines flexibility with administrative support.

Use your full plan

Many families, particularly new participants, underspend their plans. This is not rewarded at review time; significant underspend can lead to reduced funding at the next plan. If you are not using your plan, speak with your support coordinator about what is preventing access to services.