Down Syndrome Australia review of whether the Disability Royal Commission Recommendations meet our ‘Advocacy Asks’
Introduction
The final report from the Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability (the DRC/Report) was tabled in Parliament on 29 September
- The report is spread across 12 volumes and includes 222 recommendations, which will take some time to continue to understand, and require ongoing advocacy. These recommendations are aimed at improving laws, policies, systems, and processes to ensure a society that properly supports the independence of people with disability and their right to live free from violence, abuse, neglect and exploitation.
Down Syndrome Australia (DSA) is the peak body for people with Down syndrome in Australia. Our purpose is to influence social and policy change and provide a national profile and voice for people living with Down syndrome. Our vision is an Australia where people living with Down syndrome are valued, reach their potential, and enjoy social and economic inclusion.
DSA and members of the broader Down syndrome community have been involved in the Disability Royal Commission in a range of ways including:
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Making submissions to the Royal Commission on a number of topics Disability Royal Commission – Down Syndrome Australia;
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Members of the Down syndrome community contributing to public hearings; and
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Staff and Board members appearing as witnesses at public hearings. DSA welcomes the opportunity to reflect on the DRC Report and share our initial insights with the Australian Government and the Down syndrome community. This document focuses on how the DRC recommendations align with our Advocacy Asks in Prenatal screening, Health, NDIS, Education, Employment and Migration. It provides examples of how we have and will continue to advocate for change in these areas.
DSA will work with other Disability Representative Organisations (DROs) to advocate for broad disability reforms recommended throughout the report including:
- The introduction of an Australian Disability Rights Act;
- Establishment of a National Disability Commission; and
- Strengthening the Disability Discrimination Act (1992). We will also work closely with the Australian Government, other DROs, our member organisations and our community to ensure implementation of the recommendations align with our Advocacy Asks and beyond.
Executive summary
The DRC recommendations align to varying degrees with our Advocacy Asks on these issues:
Prenatal screening: Governments must ensure that prospective parents have the information they need to make informed decisions about prenatal screening for chromosomal conditions, such as Down syndrome.
The DRC final report and recommendations do not address prenatal screening. DSA will continue to advocate in this area through our work on the National Roadmap for Improving the Health of People with Intellectual Disability.
Health: Governments must ensure that people with intellectual disability and their families are better supported in health systems.
DSA does not support broadening the scope of current health initiatives for people with intellectual disability to include all cognitive disabilities (Recommendations 6.25 and 6.30).
If other health related recommendations are implemented, we envisage people with intellectual disability will be better supported in health systems and achieve improved health outcomes.
NDIS: The government must improve the NDIS to achieve its objective of supporting the independence and social and economic participation of all participants.
Our response to NDIS related recommendations in the DRC Report will be shaped by the recommendations of the NDIS Review released in December 2023. We will update our response after significant review of all NDIS related recommendations.
Education: Governments must develop a national inclusive education plan.
DSA strongly supports Recommendation 7.14 Phasing out and ending special/segregated education and DSA does not support Recommendation 7.15 An alternative approach.
Employment: The Government must be guided by a human rights approach to improve access to employment for people with intellectual disability.
DSA supports Recommendation 7.32 End segregated employment by 2034. During this period, we request immediate action to support the transition to inclusive employment and raise subminimum wages (Recommendations 7.30 and 7.31) and other employment related recommendations.
Migration: The Government must reform its laws and policies that permit discrimination in migration based on whether a person has a disability. DSA supports Recommendation 4.31 Disability discrimination and migration law.
Beyond our Advocacy Asks
Broader than our Advocacy Asks, there are several other recommendations in the DRC Report of significant importance to people with Down syndrome. These are summarised below and will be addressed in more detail as we progress our advocacy on the recommendations:
Supported decision-making principles - Recommendation 6.6 - States and territories which have not already done so, should review and reform their guardianship and administration legislation to include 10 identified supported decision-making principles. The legislation should oblige all persons exercising powers, carrying out functions or performing duties under the legislation to have regard to the principles. DSA considers this to be a positive move although it will be challenging to implement with the different State and Territory approaches to supported decision making and guardianship.
Group Homes - there was a divergence of views with 4 Commissioners recommending the phasing out of group homes within 15 years, with a contrary view to do the same over a “generational timeframe”. Recommendation 7.43 A roadmap to phase out group homes within 15 years; Recommendation 7.44 A roadmap to phase out group homes over a generational timeframe. DSA considers that group homes are a form of segregation which need to be phased out over time. We are still reviewing the merits of the two different approaches outlined in the report.
Provider of last resort scheme - Recommendation 10.10 - The Australian Government should urgently engage with state and territory governments about funding and arrangements for a provider of last resort scheme. DSA is supportive of this recommendation to address the gap that has existed in many States and Territories since the introduction of the NDIS.
Our advocacy work will also cover inclusive easy to understand information and changing community attitudes in line with our Submission to the Royal Commission on Rights and Attitudes – Down Syndrome Australia.
Prenatal screening
“I would like to see expecting parents receive support and up to date facts and positive language used.” Parent of child with Down syndrome
Our ask
Governments must ensure that prospective parents have the information they need to make informed decisions about prenatal screening for chromosomal conditions, such as Down syndrome.
Our DRC submission
We all have a lot to learn. Prenatal screening for Down syndrome – a discussion paper.
DRC Recommendations
The DRC final report and recommendations do not address prenatal screening.
Our advocacy
Australian Federation of Disability Organisations (AFDO) has released a Report Card on the DRC Final Report and Recommendations and an additional What’s missing report. As a member of AFDO, DSA contributed to these reports and as requested by DSA, the latter report includes prenatal screening and calls for the government to continue to make change in this area despite it not being included in the DRC report.
DSA successfully advocated that the National Roadmap for Improving the Health of People with Intellectual Disability include the following key action:
Commonwealth Department of Health to work with PHNs, professional colleges and disability advocacy organisations to ensure balanced, evidenced-based information about intellectual disability and related diagnosis (e.g. Down syndrome) is available to parents during the pre- and post-natal period. (Page 7 of Roadmap, section A key action 3).
We will continue to advocate for this to be implemented through our:
- Work on the Roadmap Implementation Governance Group;
- Involvement as a consortium partner in the National Centre of Excellence in
Intellectual Disability Health; and
- The Inclusive Communication in Health Project, including eLearning program for health professionals.
Health
“We would like to live a long, healthy life together.”
Joanna and Justin Moran, members of Down Syndrome Queensland.
Our ask
Ensure that people with intellectual disability and their families are better supported in health systems through:
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Full implementation of the National Roadmap for Improving the Health of People with intellectual disability;
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Increased training and support for healthcare professionals to understand and work with people with an intellectual disability; and
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Support for health professionals to better include people with Down syndrome in their own healthcare, health decisions and outcomes.
Our submission
Submission to the Disability Royal Commission on Health Issues – Down Syndrome
Australia
DRC recommendations
There are 12 Recommendations related to health, the majority of which DSA supports.
The recommendations we do not support in this area relate to broadening the scope of current health initiatives for people with intellectual disability to include all cognitive disabilities (R 6.25 and 6.30). See below for further explanation.
If the recommendations we support, listed below, are implemented alongside other DRC recommendations that affect health outcomes such as accessible information and supported decision making, then we envisage DSA’s Advocacy Asks will be achieved.
Ongoing advocacy and awareness will be needed to ensure success.
Recommendation 4.9 The right to equitable access to health services.
Recommendation 6.24 Improve implementation planning and coordination for the cognitive disability health capability framework.
DSA interprets the cognitive disability health capability framework in Recommendation 6.24 to be referring to Intellectual Disability Health Capability Framework and Core Capabilities. DSA has contributed to the government’s consultation on the framework and core capabilities. We have appreciated this opportunity and will continue to ensure implementation of the framework and capabilities are implemented through our involvement in the National Centre of Excellence in Intellectual Disability Health.
Recommendation 6.26 Expand the role of the Health Ministers Meeting to monitor health workforce capability development.
Recommendation 6.28 Improve access to clinical placements in disability health.
Recommendation 6.29 Improve specialist training and continuing professional development in cognitive disability health care.
Recommendation 6.31 Embed the right to equitable access to health services in key policy instruments.
Recommendation 6.32 Increase capacity to provide supports and adaptations through improved guidance, funding and accessible information.
Recommendation 6.33 Develop specialised health and mental health services for people with cognitive disability.
Recommendation 6.34 Introduce disability health navigators to support navigation of health care for people with disability.
We do not support the following recommendations.
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Recommendation 6.25 Expand the scope of health workforce capability development to include all forms of cognitive disability at all stages of education and training.
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Recommendation 6.30 Expand the scope of the National Centre of Excellence in Intellectual Disability Health.
All people with disability face barriers to obtaining health care. We are pleased the DRC focuses on addressing these barriers.
In some contexts, a cross disability response to health needs is appropriate, for example in providing the adaptations and supports that people with disability need in health
settings, such as physical access, sign interpreting, low sensory environments, and Easy Read information.
In other cases, people with intellectual disability need specific and specialised responses due to:
- their particular and often complex health care needs and
- the need for a co-design process that accommodates their cognitive and communication support needs and incorporates input where appropriate from family members.
There would be disadvantage to people with intellectual disability if work under the National Roadmap for Improving the Health of People with Intellectual Disability was stopped or slowed to bring it into a cognitive disability focus. A particular example is the codesigned and nearly complete capability framework for health workers.
Our advocacy
We continue to advocate for these recommendations to be implemented, and for further improvements to the healthcare of people with Down syndrome through:
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Work on the Roadmap Implementation Governance Group.
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Involvement in the National Centre of Excellence in Intellectual Disability Health
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Inclusive Communication in Health Project including eLearning program for health professionals and Health Ambassador presentations.
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Contributing to Department of Health and Aged Care (DoHA) Intellectual Disability Health Capabilities Framework and curriculum development.
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Other opportunities that arise through DoHA, DSS and Australia’s Disability Strategy.
NDIS
“Sometimes the NDIS is amazing but if I could change anything it would be that all people with disability get enough funding to live independently.”
Lauren, ACT representative on Down Syndrome Advisory Network
Our ask
The government must improve the NDIS to achieve its objective of supporting the independence and social and economic participation of all participants. For people with Down syndrome there is a need to remove barriers to access, improve the planning experience and ensure access to services and supports to exercise their choice and control.
DRC Recommendations
This section addresses volumes of the DRC report which relate to the NDIS. Most of these recommendations will be affected by the recommendations of the NDIS Review released earlier in December and so this will be a particular area of communication for DSA.
Volume 7, ‘Supporting transitions to inclusive employment’ results in Recommendation 7.29 Embed an ‘open employment first’ approach in the NDIS Participant Employment Strategy. This is included as part of the transition to inclusive employment which DSA provisionally supports. There will need to be further information about timelines and approaches to ending segregated employment. Generally, this discussion will occur within the Employment section of DSA’s Advocacy Asks although it relates to the NDIS.
Volume 8 of the Report concerns the criminal justice system as it relates to the NDIS.
Recommendation 8.17 Review NDIS Applied Principles and Tables of Support concerning the justice system and resolve issues between NDIS and justice system;
Recommendation 8.18 NDIA’s Justice Operational Guidelines and internal practice guides relating to timing of NDIA-funded transition supports should be amended; and
Recommendation 8.21 Diversion of people with cognitive disability from criminal proceedings.
These recommendations focus on the improvement of the justice system for people with disability and can be supported in principle, while we await further details. There will need to be a State based response to these issues which takes into account the local justice system, however it is worth noting that the NDIS Review has recommended the
reduction or replacement of the Applied Principles and Tables of Support and so there will potentially be a new system or new approach to this matter if that Recommendation of the NDIS Review is supported by the Commonwealth Government.
Volume 9, First Nations people with disability, outlines a range of recommendations, several of which relate to NDIS, particularly funding and culturally safe approaches to supports. These matters are discussed in greater detail in the NDIS Review and this initial review suggests that there will need to be a blending of recommendations across both the DRC and the NDIS Review to develop a new approach to both First Nations issues and regional and remote service provision. It is unclear how this might be approached at this stage, however the DRC recommendation to establish a First Nations Disability Forum might be the preferred path. This should be determined around March 2024.
Volume 10 of the DRC relates to Disability Services addresses several NDIS related issues with a focus on safety and quality. This includes recommendations about roles and responsibilities in the NDIS, particularly Recommendations 10.2 and 10.4, which might be subject to the Review’s changed processes to support coordination. This issue might be discussed as part of the State and Territory responses to the DRC which they are required to table on or before March 2024. There are no recommendations in the DRC Report which relate to access to the Scheme, early intervention provisions or increasing provider registration. The NDIS Review makes recommendations about all of these issues. Information about these recommendations in the NDIS Review will be forthcoming.
Our advocacy
Our response to recommendations relating to the NDIS are subject to significant review following the release of the final report from the NDIS Independent Review Panel. We will continue to work with the community to hear issues which have been raised, and ensure DSA is represented on the NDIA, Department of Social Services and DRO forums and advisory groups related to NDIS.
Education
“I want to go to school with my friends.”
Charlotte, SA student with Down syndrome
Our ask
The Government must develop a national inclusive education plan with clear targets and timelines, consistent with the:
- Australian Coalition for Inclusive Education Roadmap.
- UN Convention on the Rights of Persons with Disabilities (CRPD) Article 24 and General Comment 4 (GC4).
Our submission
Submission to the Disability Royal Commission on Education and Learning –
DRC Recommendations
DSA strongly supports Recommendation 7.14 Phasing out and ending special/segregated education but will advocate for the timeframe to be reduced from 2050 to 2035. This recommendation aligns with our Advocacy Asks, CRPD Article 24 and General Comment 4 and Driving change: A roadmap for achieving inclusive education in Australia (ACIE’s Roadmap).
DSA does not support Recommendation 7.15 An alternative approach. This recommendation will not end segregation and does not align with the CRPD or ACIE’s Roadmap. It continues to put children with disability at risk of violence, abuse, exploitation and mistreatment and does lay the foundation for an inclusive society. We broadly support the other recommendations relating to inclusive education. We support the following recommendations in line with our Advocacy Asks:
Recommendation 7.1 Provide equal access to mainstream education and enrolment.
Recommendation 7.2 Prevent the inappropriate use of exclusionary discipline against students with disability.
Recommendation 7.7 Inclusive education units and First Nations expertise.
Recommendation 7.8 Workforce capabilities, expertise and development.
Recommendation 7.13 National Roadmap to Inclusive Education; to be developed and released publicly through the Education Ministers Meeting. DSA support this recommendation if the Roadmap is aligned to CRPD Article 24 and GC4.
Recommendation 6.38 Strengthening the evidence base on reducing and eliminating restrictive practices [this includes in education settings].
Our advocacy work
DSA is a member of the Australian Coalition for Inclusive Education (ACIE), a national coalition of organisations working together to advance inclusive education in Australia and across State and Territory education systems.
DSA contributes to the running and advocacy work of ACIE and supports the ACIE
Roadmap – Australian Coalition for Inclusive Education
DSA welcomed the opportunity to provide input into the Australian Government’s Early Years Strategy. This submission will be added to our website early in 2024.
DSA agreed with the proposed structure of The Early Years Strategy. The submission process may uncover the need for changes to the structure. We asked the Australian Government to consider a flexible structure to allow for changes resulting from consultation and the development of the Strategy.
Our submission suggested the following vision:
Every child has the full enjoyment of all human rights and freedoms, and the opportunities and supports to reach their individual potential in a safe and inclusive community.
Our submission also covered the Strategy’s outcomes, principles, and policy areas of
Antenatal, Health, Education, NDIS, Family Support and Community Attitudes. This
submission therefore covers a range of DSA’s Advocacy Asks.
Employment
“Having a job for more than ten years has taught me I’m just like other people may age. I can live by myself and make my own decisions.”
Mr J – person with Down syndrome
Our ask
The Government must be guided by a human rights approach to:
- Improve access to employment for people with intellectual disability.
- Reform the disability employment sector. Our submission
Submission to the Royal Commission on Employment – Down Syndrome Australia
DRC Recommendations
DSA supports Recommendation 7.32 End segregated employment by 2034. Whilst this recommendation was only supported by four of the Commissioners, we see it as critical that people with intellectual disability are not encouraged on a path of segregated employment and have appropriate opportunities for open employment.
And during this period, we support immediate action for:
- Recommendation 7.30 Support the transition to inclusive employment.
- Recommendation 7.31 Raise subminimum wages. DSA supports a range of other employment related recommendations that would contribute to our Advocacy Asks being realised:
Recommendation 7.18 Establish specific and disaggregated targets for disability employment in the public sector.
Recommendation 7.19 Establish specific disability employment targets for new public service hires in agencies and departments.
Recommendation 7.22 Public reporting on public sector disability employment
Recommendation 7.23 Strengthen disability employment procurement policies within national, state and territory public service.
Recommendation 7.24 Convene a Disability Employment Rights Council
Recommendation 7.29 Embed an ‘open employment first’ approach in the NDIS Participant
Employment Strategy
DSA supports recommendations related to Reforming the Disability Employment Service (DES) Program and expects the reform will ensure people with intellectual disability are appropriately supported through the DES program.
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Recommendation 7.16 Priorities for inclusion in the new Disability Employment Services model
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Recommendation 7.17 Develop education and training resources for Disability Employment Services staff.
Our advocacy
DSA will review our Employment Position Statement early 2024 in line with our Advocacy Asks and the DRC recommendations.
DSA’s Employment Project, funded by Australian Government through the Information, Linkages and Capacity Building grants program works to support and implement Recommendation 7.32.
DSA has recently contributed to a submission on the establishment of a National Centre of Excellence in Disability Employment, in partnership with DANA, Inclusion Australia and other DROs. This submission will be available early in 2024.
Migration
“We want Australia’s migration laws to value human diversity.” Shelby Livingstone, family member
Our ask
The Government must reform its laws and policies that permit discrimination in migration based on whether a person has a disability. They should be consistent with international obligations including the UN CRPD.
Our submission
Microsoft Word - DSA_Submission RC_Migration_August 2021_WEB.docx
DRC Recommendations
Recommendation 4.31 Disability discrimination and migration law is supported by Down
Syndrome Australia and Welcoming Disability. The Australian Government should
initiate a review of the operation of section 52 of the Disability Discrimination Act, insofar as it authorises discrimination against people with disability seeking to enter Australia temporarily or permanently. The review should consider changes to the legislation and migration practices to eliminate or minimise the discrimination.
The review should be conducted with reference to the rights recognised by the Convention on the Rights of Persons with Disabilities and the Concluding Observations on the combined second and third periodic reports of Australia made by the United Nations Committee on the Rights of Persons with Disabilities.
Our Advocacy
DSA is a founding member of the Welcoming Disability campaign calling for a reform of Australia’s migration health laws to end discrimination against people with disabilities and health conditions. The DRC Recommendation is the goal of this campaign, and DSA continues to advocate for progress towards removing the discrimination in Australia’s migration health laws. Most recently, Welcoming Disability made a submission to the
Department of Home Affairs Review of Australia’s Visa Significant Cost Threshold and
Migration Health Requirements which was announced on 9 November 2023. Our submission can be viewed here.
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