// Support, research & collaboration pages, NDIS, Carer Support, Clinical Trials,
// Publications & Presentations, Global Collaboration.
// -------- NDIS Navigation Guide -------------------------------------------
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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:
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
Even if your child's presentation is currently mild, they may still be eligible. NDIS eligibility is based on the underlying permanent condition, not just current symptom severity.
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.
{/* Application, 4-step layout */}
How to apply
Four steps, in order.
If your child is 9 or older (or has been referred from the Early Childhood Approach), this is the path.
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{ n: '01', t: 'Gather your supporting evidence', b: "Letter from your child's paediatric neurologist or developmental paediatrician confirming diagnosis, permanence, and functional impact. Allied-health reports describing functional limitations. Genetic testing results. Any relevant hospital records." },
{ n: '02', t: 'Submit the access request', b: "Call the NDIS on 1800 800 110 to submit an access request, or complete the Access Request Form online or by post. You will be asked to provide basic personal information and confirm you are submitting supporting evidence." },
{ n: '03', t: 'NDIA review', b: 'The NDIA reviews your access request and supporting evidence. Typically up to 21 days. You will receive a written decision.' },
{ n: '04', t: 'Planning meeting', b: "If approved, you'll be invited to a planning meeting (in person, by phone, or video) to discuss your child's goals, current supports, and what funding is needed. This meeting shapes your child's NDIS plan." },
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Ask your neurologist or developmental paediatrician to write a letter that specifically uses NDIS language: "permanent impairment," "substantial impact on functional capacity," "likely need for lifetime support." Generic clinical letters often lack this framing and can slow applications down.
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.
For DEE families, watch out for: communication supports (AAC devices, speech-therapy intensity), behaviour support, psychology (particularly for parents/carers), respite and carer supports, and specialist support coordination. If these are not in your plan, raise them at your planning meeting or review.
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.
{/* Featured: Rare Voices toolkit */}
Co-designed with our community
Rare Disease Disability Toolkit
Produced by Rare Voices Australia. SCN2A Australia was part of the codesign team.
rarevoices.org.au/toolkit-page
Built specifically for people living with rare-disease disability, including SCN2A and DEE. Covers community inclusion, health self-advocacy, and NDIS navigation in plain language, with peer-to-peer support resources.
);
}
// -------- Carer Support & Wellbeing ---------------------------------------
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There is sometimes an unspoken expectation that carers should cope, that love for a child somehow replaces the need for rest, support, or acknowledgement of difficulty. It does not.
Caring for a child with a complex neurological condition involves grief, grief for the life you had imagined, for typical milestones that pass differently or not at all, and sometimes for periods of your child's health that are particularly frightening. That grief is real, and it deserves acknowledgement.
It also involves extraordinary resilience, fierce advocacy, deep knowledge of your child, and a capacity to hold complexity that few people outside of your situation fully understand. Both things are true at once. You do not have to be one or the other.
What we hear
Common experiences among DEE carers.
{[
['Exhaustion and sleep deprivation', 'Seizure monitoring, night waking, high-needs care, chronic sleep deprivation has serious effects on physical and mental health, and on the capacity to care.'],
['Anxiety and hypervigilance', 'When your child has seizures, background awareness of risk becomes constant. Many carers describe a state of chronic alertness that makes it difficult to relax.'],
['Grief and loss', 'Grief is not only at diagnosis. It resurfaces at key moments, a missed milestone, a treatment that does not work as hoped. Allowing space for it is important for long-term wellbeing.'],
['Social isolation', 'Friendships drift. Couple relationships are strained. The isolation of being one of very few who understand what your family is living can be profound.'],
['Financial stress', 'The impact through lost income, therapy costs, equipment, and travel is significant for many families, and is not always acknowledged.'],
['Diagnostic uncertainty', 'For families still in the diagnostic process, or living with a variant of uncertain significance, the absence of a clear answer adds its own burden.'],
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Respite care
Respite is one of the most valuable supports available to carers, and one of the most underused. Many carers feel guilty accessing it, or do not know what is available.
NDIS, respite (including Short Term Accommodation) can be included in your child's plan as Core Support funding. If not already in your plan, raise it at the next review.
Carer Gateway, the Australian Government's carer support service provides emergency respite, planning assistance, and coaching. carergateway.gov.au or call 1800 422 737.
State-based disability and respite services, available in some states and territories outside the NDIS framework.
Financial support
Centrelink offers payments specifically for carers:
Carer Payment, income-tested payment for people providing constant care
Carer Allowance, supplementary payment for carers providing daily care; can be received in addition to Carer Payment or by working carers
Carer Supplement, annual payment made automatically to Carer Payment and Carer Allowance recipients
Through Carer Gateway, carers can access free counselling (individual and group), peer support, online skills courses, and carer coaching, nationally, without NDIS eligibility.
Carer mental health is a genuine health concern, not a personal failing. Research consistently shows elevated rates of anxiety, depression, and post-traumatic stress among carers of children with complex medical conditions. This is a rational response to sustained, high-stakes pressure.
If anxiety, depression, or emotional exhaustion is affecting your daily functioning, please consider speaking with your GP as a first step. Your GP can:
Provide a mental health care plan (Medicare-rebated psychologist sessions)
Discuss medication if relevant
Refer to specialist mental health services
Accessing support for your own mental health is not a distraction from caring for your child, it is part of it.
One of the most consistent things families in the SCN2A community say is that connection with other families who genuinely understand is invaluable, in a way that even the most supportive friends and family cannot quite replicate.
SCN2A Australia links families with others in similar situations, similar ages, similar challenges, peer connections made through our network, not through a referral pathway. We also coordinate regular virtual meetups and an annual family event where families can connect in person.
There is something profoundly relieving about a conversation where you do not have to explain what SCN2A is, or why your child's seizures are particularly dangerous, or what a bad night looks like. That relief is worth seeking out.
SCN2A Australia has been directly involved in bringing peer wellbeing support to Australian carers of children with rare epilepsies through the Angel Aid caregiver wellness program.
Angel Aid, run by Raregivers, Inc., provides specialised wellbeing support for carers in the rare-disease community. Their six-week online group wellness retreat was adapted for the Australian rare-epilepsy community and piloted with families like yours.
The programme was co-designed with a multidisciplinary team and evaluated in a peer-reviewed research study led by SCN2A Australia's Director, Kris Pierce, published in the Orphanet Journal of Rare Diseases (2025). One participant put it simply:
"Just realising that I wasn't alone… was profound."
The Angel Aid programme offers:
A structured six-week online group wellness programme
Tools for self-care, resilience, and emotional wellbeing
Connection with other carers who genuinely understand
Flexible, online format accessible from anywhere in Australia
Brothers and sisters of children with SCN2A or DEE often carry their own particular experiences, of worry, of missing out, of growing up quickly, and also of deep love and understanding for their sibling. Sibling wellbeing matters, and it is easy to overlook.
SCN2A Australia can connect families with sibling support resources, including:
Sibling support groups run by disability organisations
Children's books and resources for explaining disability to siblings at different ages
Counselling support for siblings experiencing anxiety or grief
Siblings Australia, siblingsaustralia.org.au, provides resources, workshops, and connection specifically for siblings of people with disability or chronic illness.
The strain of caring for a child with a complex medical condition on couple and family relationships is significant and is often not discussed openly. Many families experience increased conflict, emotional distance, or exhaustion during periods of high stress.
If you and your partner are finding it difficult, relationship counselling through Relationships Australia (1300 364 277) or a private couples therapist may help. The Carer Gateway can also assist with relationship support as part of its broader offering.
There is no shame in acknowledging that your relationship needs attention. It is harder to care well when the foundations are strained.
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