NDIA Accountability Project

Capacity and Culture of the NDIA

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Capacity and Culture of the NDIA

Joint Standing Committee on the National Disability Insurance Scheme

November 2022

SYNDROMES WITHOUT A NAME (SWAN) AUSTRALIA

SWAN Australia provides information, support, connection and systemic advocacy for families caring for a child with an undiagnosed or rare genetic condition. We are the national peak not-for-profit organisation representing approximately 2500 children born without a diagnosis yearly and around 1 in 12 children born with a rare genetic condition. This equates to about 350,000 children across Australia at any one time.

Of the children who present to a geneticist, 30 - 50% will receive a diagnosis. This is especially difficult if the child has a regressive or life-limiting condition.

SWAN increases community awareness and understanding of the impact and prevalence of undiagnosed and rare genetic conditions. We reduce the isolation and emotional strain of raising a child with health conditions and/or disability by helping SWAN families connect. We provide parent information sessions, peer support events and social networking opportunities where SWAN families can form lifelong bonds. SWAN advocates for improved disability supports free and equitable access to genetic and genomic testing, and increased research funding to ensure more children can be diagnosed.

We provide a public voice for our families, campaigning for better community education and improved resources and pathways so that SWAN children can thrive.

This submission was prepared by Heather Renton, Chief Executive Officer and Founder

  • Syndromes Without A Name (SWAN) Australia.

For enquiries, please contact: Heather Renton

SWAN Australia acknowledges the Traditional Custodians of the land and pay our respects to their Elders past, present and emerging.

Syndromes Without A Name (SWAN) Australia ABN: 60 997 297 388 ARBN: 646 034 880

PO Box 390, Fairfield VIC 3078 instagram.com/swanaus facebook.com/SWANAustralia linkedin.com/company/swanaustralia

info@swanaus.org.au twitter.com/swanaus

Table of Contents

Executive Summary

Thank you for the opportunity to provide feedback on the culture and capacity and culture of the NDIA. It is important that we express the views of our SWAN members in this submission.

Many of our 737 SWAN children are thriving thanks to the NDIS. However, many have had issues with not getting the funding in their child’s plan to support their goals.

Our families have identified five key areas of concern around the capacity and culture of the NDIS. We have identified them in our summary or key issues and recommendations and have gone into them in more detail in this submission.

Since 2017 SWAN has written 14 submissions around the NDIS in the hope of improving the scheme, yet we are still writing them. This has to change! We hope that once the NDIS Review has been completed, the NDIS will be able to better support SWAN children to reach their full potential.

SWAN Australia — Capacity and Culture of the NDIA — Submission November 2022 4o0f9

Summary of Key Issues and Recommendations

Key Issues

Recommendations

  1. Local Area Coordinator (LAC) and NDIA Planner Training

Introduce training for Early Childhood Partners, Local Area Coordinators and NDIA Planners in disability and around understanding undiagnosed and rare genetic conditions.

Establish a Genetic Undiagnosed and Rare Disease Reference Group.

  1. Local Area Coordinator (LAC) and NDIA Planner Understanding “Parental Responsibility”

Increase understanding among Early Childhood Partners, Local Area Coordinators and NDIA Planners about the supports a parent provides to their child with disability, compared to what they would provide to a child without disability of the same age.

  1. Transparency on how decisions are made and addressing the issues of poor communication

Communicate with NDIS participants about how decisions are made.

  1. Lack of flexibility within plans

Increase flexibility of how supports can be used within plans.

Be flexible about the option to make small changes to plan or request an urgent review if a participant’s situation changes.

  1. The need for more advocacy agencies for families who have children under 18 years of age

Increase funding for advocacy agencies, especially for those specialising in representing children.

Introduction

We applaud the NDIS Joint Standing Committee’s commitment to improving the NDIS. We hope the scheme continues to make improvements by collaborating with people with disability, their families, and the sector that supports them, ensuring the scheme remains person-centred and will continue to provide our SWAN families with opportunities to live their best lives.

We feel the NDIA could improve their capacity and culture when it comes to understanding the needs of SWAN families. The main issues around the culture and capacity of SWAN Families are:

  • Local Area Coordinator (LAC) and NDIA Planner Training
  • Local Area Coordinator (LAC) and NDIA Planner understanding “Parental Responsibility”
  • Transparency on how decisions are made and addressing the issues of poor communication
  • Lack of flexibility within plans
  • The need for more advocacy agencies for families who have children under 18 years of age

SWAN Australia – Capacity and Culture of the NDIA – Submission November 2022 6 of 9

Early Childhood Partners, Local Area Coordinators (LAC) and NDIA Planner Training

Mandatory training

One way to support NDIA staff would be to establish mandatory training and education for Early Childhood Partners, LACs and NDIA Planners in disability and around understanding undiagnosed and rare genetic conditions. Many genetic conditions affect the functional capacity of a person. We don’t expect them to have an understanding of each of the 7000 rare genetic conditions, but understand in general that genetic conditions can be episodic and fluctuate in nature, and things can turn around very quickly.

Genetic conditions are lifelong

Undiagnosed and rare genetic conditions are lifelong and usually impact functional capacity to some degree. They do not go away - until we have gene therapies such as Crispr that can alter genes, gene variants and genetic conditions won’t change.

SWAN children require complex planners to write their plans

SWAN children are complex in nature, and they need to see experienced and well-trained NDIA Planners. They should be matched with planners who have experience in writing complex plans. They should have access to complex support pathways.

Lack of experience and qualifications of Early Childhood Partners, LACs and NDIS

Planners The lack of experience and qualifications of Early Childhood Partners, LACs and NDIS Planners is clearly reflected in the number of plans requiring review. Many SWAN families reported that their plans did not have adequate funding to support their children to thrive. We estimate that 30% of SWAN families have requested a plan review of some form as a direct result of not having adequate funding to support their child’s goals and needs, such as therapy and equipment in their plan. This is particularly the case when applying for equipment for children under five years old.

Establish a Genetic Undiagnosed and Rare Disease Reference Group

Another way to support NDIA staff would be for the NDIA to look at establishing a Genetic Undiagnosed and Rare Disease Reference Group as one of the Independent Advisory Council’s Reference Groups that planners could go to for advice. They could also reach out to organisations such as SWAN, the Genetic Support Network Victoria and Genetic Alliance Australia for support around undiagnosed and rare genetic conditions.

Scheme favours some genetic conditions with easier access to the scheme than others

Undiagnosed and rare genetic conditions need to be added to the lists in the operational guidelines. The operational guidelines lists A and B make entry to the scheme for some genetic conditions a lot easier than others. This seems a little unfair and some of our members’ children have to apply more than once to enter the scheme. The access team needs to also be aware of undiagnosed and rare genetic conditions.

The scheme is not a diagnosis-based scheme

We have had at least three SWAN families from South Australia report that their Ealy Childhood Partner told them that once their child turns seven they will have to leave the NDIS because they don’t have a diagnosis. It appears some people employed by the NDIA do not understand that it is a functional capacity-based scheme and not a diagnosed-based scheme.

Early Childhood Partners, Local Area Coordinators (LAC), and NDIA Planner understanding “Parental Responsibility”

Mandatory training

Section 34 of the NDIS Act states what the criteria is for funding reasonable and necessary reports. It takes into account what is reasonable to expect families, carers, informal networks and the community to provide.

However, we hear from our members that LACs tell them that they won’t get Core supports in their plan because the scheme deems caring for your child on a day-to-day basis as “parental responsibility”. Since parents no longer receive Home and Community Care (HACC) funding, many parents fail to get a break in their caring responsibilities.

We know that parenting a SWAN child can be more difficult and takes more energy than parenting a non-SWAN child. There is a constant flow of medical and therapy appointments, which can lead to exhaustion over time and this can lead to family breakdown.

Transparency on how decisions are made and addressing the issues of poor communication

Stop wasting money asking participants for reports when plans are to be rolled over

We feel the NDIA could waste less resources if transparency and communication were improved. For example, as a participant’s plan was due for review, the LAC told the parent to gather reports. They spent time and money doing this and then later received a letter in the mail that their child’s plan had been reviewed and rolled over with no discussion with the family or LAC.

Introduce three-way meetings to discuss plans and decisions

Whatever happened to the proposed plan to introduce three-way meetings and discussion of draft plans between participants, their Early Childhood Partner or LAC, and their Planner? If we had these, parents could discuss supports directly with a planner and understand some of the reasoning behind participants’ NDIS plans and why their child’s funding request might be rejected.

Decrease staff turnover

LACs seem to have a very high staff turnover and many families report having a different LAC at each review meeting and in between plans. Continuity of care is missing, which is disappointing.

Lack of flexibility with plans

Ensure Core and Capacity Building supports can be interchangeable

Ensure Core and Capacity Building Supports can be interchangeable so that plans can be utilised more flexibly.

Greater short-term flexibility in NDIS plans

Flexibility needs to be applied, and if funding is deemed urgent then plans should be reviewed within seven days e.g. a child comes home from hospital and may require a different level of support. SWAN children’s genetic conditions are often complex in nature and can be episodic and fluctuate. Their condition can deteriorate rapidly, and they may need more supports than what was originally allocated in their plan.

c) More flexibility to adjust NDS plans between plan reviews

The flexibility to make small changes to a plan rather than trigger a plan review will keep stress levels down among our families.

5. The need for more advocacy agencies for families who have children

under 18 years of age

a) More resources for advocacy

SWAN families struggle to find advocacy agencies to represent them at the Administrative Appeals Tribunal. Many don’t specialise in representing children under the age of 18 and many have long or closed waiting lists.

Syndromes Without A Name (SWAN) Australia

PO Box 390, Fairfield VIC 3078 | info@swanaus.org.au | 0404 280 441

ABN: 60997 297388 ARBN: 646 034 880

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swanaus.org.au

@SWANAustralia @swanaus linkedIn.com/company/swanaustralia instagram.com/swanaus/ youtube.com/c/SwanausAus