This blog post summarises the key insights from the latest Virtual Education Session (VES) presented by Alex Rosenthal, a branch manager at the engagement and inclusion branch of the National Disability Insurance Agency (NDIA) which runs this NDIS. This engagement and inclusion team are responsible for community engagement, work closely with national disability representative organisations, manage the NDIS inclusion strategies, and provide support to the NDIA reference and advisory groups. Alex has been with the NDIA for almost 10 years and has worked across a number of roles and teams including in policy and communications.

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What is the NDIS?

The National Disability Insurance Service (NDIS) is a nation-wide, government funded scheme that provides funding and support for people with permanent and significant alternate abilities that help provide independence, community participation, and overall achievement of personal goals. This funding is administered by the NDIA and anyone aged nine years old or older who fits the criteria can apply.

Accessing the NDIS

The process for adults seeking NDIS access goes as follows:

– Initial contact occurs through a Local Area Coordinator (LAC) or directly with the NDIA, depending on location

– Applicants complete an Access Request Form

– Evidence is required to confirm:

  • Identity
  • Citizenship or residency  
  • Disability-related functional impacts

Support from LACs may also include connecting people with community services while their access request is in progress.

If approved, the person becomes an NDIS participant and receives a plan.

Eligibility Requirements

To access the NDIS, a person must:

  • Be under 65 at the time of entry
  • Be an Australian citizen, permanent resident, or hold a protected SCV
  • Live in Australia and not spend more than a continuous 6-week period overseas
  • Have a disability caused by a permanent impairment that results in substantially reduced functional capacity

The impairment must fall under at least one of the following categories:

  1. Intellectual
  2. Cognitive
  3. Neurological
  4. Sensory
  5. Physical
  6. Psychosocial

Note: Medical conditions which can be treated or improved through clinical treatment may not meet the threshold of permanent impairment, a common point of confusion for chronic, autoimmune, or fluctuating conditions.

Understanding Functional Capacity

Functional impacts are assessed across six domains:

  • Communication
  • Social interaction
  • Learning 
  • Mobility
  • Self-care
  • Self-management

Meeting the access criteria requires a significant limitation in at least one domain, not all six.

Evidence Requirements

Evidence may include:

  • Medical reports outlining diagnosis and functional impacts
  • Allied health assessments
  • Functional capacity evaluations
  • Identity and residency documentation

This evidence helps the NDIA determine whether a condition is permanent and significantly impacts daily life.

Developing and Using Your NDIS Plan

Once accepted, participants receive an NDIS plan that includes:

–  A total budget

– Allocation across the three possible categories:

  • Core Supports
  • Capacity Building
  • Capital Supports (e.g., assistive technology, home modifications)

Funding Periods

There has been a new structural change to NDIS Funding:

  • Plans may last 1-5 years, but funding can now be released in smaller periods (e.g., every 3 or 6 months).
  • This does not reduce the total budget
  • It simply changes when funds become available
  • Participants can still book ongoing supports (e.g., weekly physio) without interruption

Participants may request a budget breakdown to understand how the NDIA calculated their funding.

Plan Management Options

Participants can manage funds through:

  • Self-management (full flexibility)
  • Plan management (providers handle invoicing)
  • Agency management (NDIA pays registered providers directly)

Most participants use a combination of options.

What the NDIS Can and Cannot Fund

  • NDIS Supports (funded):
    • Personal care
    • Daily living assistance
    • Therapy
    • Supports to access education or employment
    • Community participation
  • Not Funded:
    • Anything the health or education systems are responsible for
    • Everyday living costs (rent, groceries, utility bills, mobile phone plans)
    • Non-evidence-based or unsafe treatments
    • Alcohol, drugs, or sexual services

Note: Some exceptions exist under replacement supports, e.g., a smart device used for communication.

Review Rights

If a participant disagrees with:

  • Their plan
  • Their budget 
  • An access decision

They can:

  1. Contact the NDIA for explanation
  2. Request an internal review (within 3 months)
  3. If still dissatisfied, escalate to the Administrative Review Tribunal (ART)

Upcoming NDIS Assessment Reforms

  • From mid-next year, the NDIS will begin introducing a new national NDIS assessment tool.
  • It is called ICAN, developed by the University of Melbourne’s Centre for Disability Studies, and currently used in aged care and disability practice.
  • It is not a diagnostic tool; it identifies support needs rather than diagnosing conditions.
  • Assessment staff will undergo specific accreditation to ensure more consistent and informed decisions.
  • Rollout will take approximately five years.

Aim of reform: To reduce reliance on participant-provided evidence, increase consistency, and better understand support needs.

Mobility Related Funding

  • People can receive the Commonwealth Mobility Allowance if they are not yet on the NDIS.
  • Once someone becomes an NDIS participant, this allowance is absorbed into their plan.
  • The NDIS offers three levels of transport funding,  paid fortnightly, determined by factors like:
    • Whether the person can use public transport
    • Study or work commitments
    • Whether others in the household can reasonably assist with transport

        – If you do not receive a periodic transport payment, the NDIS can include transport funding within your Core supports.

Clarifications regarding scleroderma and the NDIS

Audience Question: Will there be long-term support for therapies such as physiotherapy, which maintain function rather than improve it?

Answer: Long-term, ongoing therapies can still be funded and booked normally as funding periods only determine how funding is released, not the total amount. Participants who meet permanent disability criteria remain participants for life, and the NDIS acknowledges that many supports for chronic conditions aim to maintain, not improve, health.

Audience Question: Will assessors be medically qualified?

Answer: No, assessors will not be medically qualified. Their expertise comes from accreditation in the ICAN tool, which focuses on lived support needs, daily impact, and functional requirements, not medical diagnoses.

Audience question: Do support needs like heated jackets and gloves fall under the funded category to assist with conditions such as Raynaud’s.

Answer: Yes, these items can fall under adaptive clothing and be funded if discussed at planning meetings. Evidence from rheumatologists or occupational therapists would typically support these requests.

Audience question: How many times can a person re-apply? 

Answer: There is no limit on the number of access applications. In fact, this is common for degenerative, progressive, and rare conditions where medical treatment and disability needs evolve.

Audience question: What services are commonly used by participants with scleroderma?

Answer: Home cleaning assistance, occupational therapy, physiotherapy, assistive technology, adaptive clothing (e.g., heated jackets, gloves), support workers for daily living, transport assistance, home modifications (where relevant). These vary significantly because scleroderma presents differently for every individual.

Conclusion

This session highlighted just how critical the NDIS can be for people living with scleroderma, a condition that is often invisible, misunderstood, and highly individual in its progression. By breaking down the system into practical, achievable steps, the presenters empowered attendees with knowledge and confidence to approach the NDIS process with clarity rather than overwhelm.

A key message throughout was the importance of strong evidence: detailed reports, lived-experience descriptions, and support from clinicians who understand scleroderma’s unique challenges. Whether it’s managing mobility changes, fatigue, gastrointestinal symptoms, digital ulcers, or day-to-day functioning, the NDIS can play a vital role in enabling greater independence and participation in work, community, and family life.

Ultimately, the session reinforced that people with scleroderma are not alone in navigating the system. With the right information, advocacy, and support, the NDIS can become a partner in building a safer, more sustainable future.

For those living with Scleroderma, staying updated and informed can make a world of difference. Connecting with others can also be hugely beneficial. Find out more about support in your area by clicking here. 

If you’d like to gain firsthand knowledge, our National Education Sessions and Virtual Education Sessions are available to you at no charge. Our Virtual Education Sessions are held every month through Google Meet. You can sign up for these free Virtual Education Sessions by clicking here.

These sessions provide an opportunity to engage with medical professionals and seasoned legal experts who will address common inquiries about Scleroderma and related topics.

TL;DR (Too Long; Didn’t Read):

This virtual education session explored how people living with scleroderma can navigate the NDIS more confidently, including understanding eligibility, building strong applications, and accessing supports tailored to complex, fluctuating conditions. Speakers emphasised the importance of clear evidence, multidisciplinary input, and working closely with healthcare professionals to communicate the day-to-day impact of scleroderma. Participants gained practical tips, examples, and guidance to help advocate for the support they need to live safely, independently, and with improved quality of life.