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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
heather@swanaus.org.au 0404 280 441
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 info@swanaus.org.au Ii nkedi n.co m/ company/swan austra Ii a
0404 280 441 twitter.com/swanaus
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Table of Contents
Executive Summary 4
Summary of Key Issues and Recommendations 5
Introduction 6
1. Neglect within the healthcare system due to treatment inequality 7
a) Introduce case managers in hospitals and other settings who can support and coordinate services for children with undiagnosed and rare genetic conditions 7
b) Include more Disability Liaison Officers in hospitals 7
c) Improve allied health services for adolescents 7
2. Provider abuse and neglect in childcare and day programs 7
a) Regulate systems of support workers to improve accountability and prevent abuse 7
b) Establish formal training, education and professional development for disability support workers 8
c) Increase means of communication for non-verbal people or people with limited communication 8
3. Neglect in Schools 8
a) Support the need for special schools and special development schools, especially for children with behavioural issues 8
b) Improve disability awareness training in schools 9
c) Train staff to prevent bullying and raise awareness of bullying when it occurs within schools 9
4. Exploitation when accessing government funding and the community 9
a) Emphasise that the NDIS is a needs-based, not a diagnosis-based scheme 9
b) Enable better and safer access to the community through appropriate methods of transport 10
c) Increase funding for smaller organisations helping people with disability at the grassroots level 10
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I__________Executive Summary I
Thank you for the opportunity to make a submission for the Royal Commission on violence, abuse, neglect and exploitation of people with disability.
Many of our 750 SWAN families have their own stories. We aim to generally capture the experiences of children with undiagnosed and rare genetic conditions and their families. In this submission, we first list and then elaborate on key issues and recommendations in relation to neglect, abuse and exploitation.
SWAN supports the need for greater awareness and recognition of the injustices experienced by people with disability in Australia and throughout history. We support actions taken to restore justice and improve accountability so that our systems better protect people with disability.
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Summary of Key Issues and Recommendations
Key Issues Recommendations
- Introduce case managers in hospitals and other settings, who can support and coordinate services 1. Neglect within the
for children with undiagnosed and rare conditions healthcare system due
to treatment inequality • Include more Disability Liaison Officers in hospitals
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Improve allied health services for adolescents
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Regulate systems for support workers to improve accountability and prevent abuse
- Provider abuse and • Establish formal training, education and professional neglect in childcare and
development for disability support workers. day programs
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Increase means of communication for non-verbal people or people with limited communication
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Support the need for special schools and development schools, especially for children with behavioural issues
- Neglect in schools • Improve disability awareness training in schools
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Train staff to prevent bullying and raise awareness of bullying when it occurs within schools
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Emphasise that the NDIS is a needs-based, not diagnosis-based scheme 4. Exploitation when
accessing government • Enable better and safer access to the community
funding and the through appropriate methods of transport
community • Increase funding for smaller organisations helping
people with disability at the grassroots level
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Introduction
We must represent children with undiagnosed and rare genetic conditions who form part of the larger community of people with disability sharing their stories and experiences. SWAN children are vulnerable due to the nature of their conditions, their capacity to inform others about abuse and neglect, and their young age. Our families are marginalised and experience ongoing neglect and exploitation due to gaps in healthcare, education and disability services. We feel that some healthcare professionals, the disability workforce, educators, policy makers and the community generally lack awareness of the challenges SWAN families face and are ill-equipped to meet the complex needs of SWAN children. Without awareness, understanding and advocacy, our children are susceptible to neglect, particularly in environments where the parents or carers are not absent.
The main issues around neglect, abuse and exploitation for SWAN families are:
- Neglect within the healthcare system due to treatment inequality
- Provider abuse and neglect in childcare and day programs
- Neglect in schools
- Exploitation when accessing government funding and the community SWAN Australia — Disability Royal Commission — Submission - December 2022 6 of 10
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- Neglect within the healthcare system due to treatment inequality a) Introduce case managers in hospitals and other settings who can support and coordinate services for children with undiagnosed and rare genetic conditions People with undiagnosed and rare genetic conditions have greater difficulty accessing information and treatment due to gaps in research and funding for medical resources. SWAN families devote significant time and effort to learning about their child’s condition, a burden that reduces their ability to provide essential care. The disadvantage is felt even more strongly as families are often responsible for educating health professionals about their child’s condition so they can receive appropriate care.
Our families report neglect within hospitals and healthcare settings when health professionals fail to communicate effectively with one another and so are unable to meet the complex physical or psychological needs of the child. Introducing a case manager with a holistic approach, who can coordinate care for the child, would minimise the risk of medical neglect and reduce the burden on parents to advocate for their child constantly.
b) Include more Disability Liaison Officers in hospitals Disability Liaison Officers (DLOs) in hospitals provide specialised supports to people with disability and their medical team, helping improve communication and medical management. Some SWAN parents and carers also have rare genetic conditions (which they have passed on to their children). Children and parents/carers must be empowered with accessible information to be well informed about treatment options and have control over decisions. DLOs may help provide information and help doctors better understand the child and family’s needs and preferences.
c) Improve allied health services for adolescents SWAN families who have adolescent children with undiagnosed or rare conditions have experienced neglect in the form of treatment refusal. Often therapists do not want to work with teenagers as they prefer working with children. SWAN children in their teenage years often have complex behavioural issues as they navigate social challenges, and puberty and seek independence. We need more comprehensive training for health professionals and greater funding for adolescent and youth health services. Educators can also raise awareness of the needs of adolescents with rare conditions in university courses so that graduating students may feel better equipped and motivated to work with them.
- Provider abuse and neglect in childcare and day programs a) Regulate systems of support workers to improve accountability and prevent abuse SWAN children are susceptible to abuse by disability service providers, as the system does not have checks and balances that hold support workers accountable. Our families have reported several cases of neglect by support workers, including a lack of
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supervision with dangerous objects in the space or support workers not showing up for school pick-up. When parents witness or become aware of neglect, it makes them question how often it goes unnoticed. This abuse is anxiety inducing for our families. Disability service providers require stricter systems for reporting and penalising their employees for neglect. Providers lack oversight compared to other employers whose staff work with children with disability.
b) Establish formal training, education and professional development for disability support workers
Whilst neglect can, unfortunately, be the intention; it can also arise from ignorance. Support workers who support children with complex needs require better training to understand the child’s needs. Professional development should holistically address the child’s medical, social, behavioural and psychological needs. We predict that training would yield better and safer outcomes for the child. For example, a support worker who has undergone training might be more confident to make good decisions in a medical emergency.
c) Increase means of communication for non-verbal people or people with limited communication
SWAN children may be limited in their capacity to report abuse, which can concern parents. One family suspected an incident occurred in childcare, as their non-verbal child would scream whenever the carer went near her. Unfortunately, the parents could not work out what happened. There are many ways we can better accommodate the communication needs of children with undiagnosed and rare genetic conditions so they can communicate their concerns. One strategy is to increase funding for assistive technology, Auslan training programs and speech therapy.
- Neglect in Schools a) Support the need for special schools and special development schools, especially for children with behavioural issues
Children with undiagnosed and rare genetic conditions, especially those with behavioural issues, may often have complex social and educational needs. The general push towards mainstream schooling does work for some SWAN families, but there are too many inequalities within states regarding attending special schools and special development schools. For children with behavioural difficulties, mainstream schools often have inappropriate teaching strategies in place to support students and are under resourced to accommodate the SWAN child’s needs. This compromises the psychological safety of SWAN children, who are at risk of being bullied or abused at school.
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b) Improve disability awareness training in schools Staff training is required to understand better students with special needs and how to make reasonable adjustments for them. When SWAN children attend a mainstream school, it may be ineffective and frustrating for the student and their families. Principals and teachers can work more collaboratively with our families to better monitor the child’s progress rather than let them slip through the cracks. We need a higher level of funding for increased hours of support staff for students with disability and increased opportunities for staff professional development in supporting children with disability better in mainstream schools. A lack of support for their development is a form of neglect.
c) Train staff to prevent bullying and raise awareness of bullying when it occurs within schools School can be an isolating experience for SWAN children, as many sadly experience bullying and exclusion. According to our families, some teachers have been bystanders when bullying occurs, and some have shockingly contributed to the problem themselves. We believe that staff can play a more active role in the playground to help our children participate socially. There should be stronger leadership in schools to hold teachers accountable for actions that enable bullying.
Our concern is that when a teacher is reported for neglect or bullying a student, it is the Department of Education that investigates, not an independent body. This is a flawed and biased system that needs to change.
- Exploitation when accessing government funding and the community a) Emphasise that the NDIS is a needs-based, not a diagnosis-based scheme Many SWAN families have difficulty accessing the NDIS or obtaining sufficient funding, as they cannot “tick boxes”. Children with undiagnosed and rare genetic conditions report receiving inequitable funding compared to children with more well known conditions. To justify funding, families often resort to their children identifying conditions that represent a limited picture of their child’s complex condition, such as autism or cerebral palsy. In a recent study by the University of Melbourne Disability Institute and SWAN Australia, almost half of our survey participating families found that government funding received was insufficient to meet their child’s support needs for them to achieve their goals. They reported using out-of-pocket expenses to manage shortfalls in funding. SWAN families experience exploitation when they are misled to believe that the scheme is diagnosis-based rather than needs-based. Some Early Childhood Partners in South Australia have incorrectly informed our families that they would have to leave the NDIS once their undiagnosed child turns seven because they lacked a diagnosis.
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b) Enable better and safer access to the community through appropriate methods of transport SWAN parents and carers have difficulty purchasing an affordable, accessible transport vehicle for their SWAN child requiring a wheelchair. They may have difficulty funding the high cost of a vehicle despite having the wheelchair conversion funded in their child’s NDIS plan. In reality, the NDIS should probably fund the gap between the cost of purchasing a medium sized car and a larger vehicle that must be purchased to accommodate a wheelchair. Due to transport barriers, SWAN children may experience psychological neglect if they cannot participate in the community.
SWAN families may be disadvantaged if their child goes to a special school or special development school if they live outside the designated transport zone or within four kilometres of the school. If this is the case, getting transport funded in their child’s NDIS plan can be very difficult as many NDIS Planners deem this “parental responsibility”.
More support to modify vehicles and fund everyday transport would benefit our families whose children have the right to appropriate and affordable transport options.
There are other instances where travel should be made safer and more accessible for SWAN children. At the airport, children get scanned first at security, and when parents are left behind, children are unsupervised. Systems need to change so parents and children with disability can be checked and scanned together.
c) Increase funding for smaller organisations helping people with disability at the grassroots level People with disability navigate systems that require extensive paperwork and organisation. Notably, NDIS applications require self-advocacy, letters of support and evidence-based justification of funding requests for support items. Therapists and medical practitioners are not always aware of NDIS language. SWAN families who are time-poor and exhausted find NDIS reviews to be anxiety-inducing and overwhelming. Grassroots organisations specialising in peer support and disability advocacy can provide essential information to families and educational resources for supporting professionals so that children can receive adequate funding to support their needs. Increasing funding for such organisations means better support for families, which may help them achieve better mental health and funding outcomes for their children, reducing neglect.
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