NDIA Accountability Project

Submission 9 — Down Syndrome Australia — Foundational Supports for Children Under 7 - Consultation Paper

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Down Syndrome Australia Consortium

Submission on Foundational Supports for children with developmental concern, delay and/or disability and their families, carers and kin

5 December 2024

About the Down Syndrome Australia Consortium

Down Syndrome Australia (DSA) was established in 2011 as the national peak body for people with Down syndrome and their families in Australia. Our vision is that people living with Down syndrome are valued and have full access to social and economic inclusion to reach their full potential.

Down Syndrome Australia is one of eleven National Disability Representative Organisations (DRO) and leads a consortium of organisations to represent people with intellectual disability

and their families and supporters, with a focus on  intellectual  disability caused by

chromosomal variations.

Our consortium members are:

  • Down Syndrome Australia and its’ member organisations - ACT Down Syndrome and

Intellectual Disability, Down Syndrome Queensland, Down Syndrome Tasmania,

Down Syndrome Victoria and Down Syndrome Western Australia

  • Angelman Syndrome Association Australia
  • Australian X and Y Spectrum Support
  • Cri du Chat Support Group
  • Fragile X Association of Australia
  • Prader-Willi Syndrome Australia
  • Smith-Magenis Syndrome Australia
  • Turner Syndrome Association of Australia People with these chromosomal variations experience intellectual disability varying from mild to severe, often accompanied by degrees of physical disabilities, higher rate of co occurring neurodevelopmental conditions and health issues.

It is important that the views of people with chromosomal variations and their families and supporters are represented in the development of policies and services that affect their lives.

For people with these chromosomal variations, their families and supporters play a significant role in their lives from advocacy to skill development and providing supports and care. They are a critical part of the lives of a person with intellectual disability and form an important part of our advocacy work.

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All our work is within the human rights model of disability and informed by the Convention on the Rights of Persons with Disabilities (CRPD).

People with intellectual disability with a focus on chromosomal variations Across the DSA consortium, there are an estimated 20,000 people in Australia with these

chromosomal  variations  receiving support, information and  advice,  of which Down

syndrome is the most common.

Our Work

Down Syndrome Australia is also recognised as a Disability Representative and Carer Organisation (DRCO), working with the NDIS.

Many of our Consortium members deliver a range of Information, Linkages and Capacity Building (ILC) grants and other projects across the country. These projects span information, programs, services and other forms of community supports for people with disability, their families and supporters – including medical professionals and carers.

We ensure people with disability are at the heart of our work, utilising best practice principles such as genuine co-design and co-delivery across our projects, and supporting the community with accessible information. We have been internationally recognised for our commitment to organisational inclusion – actively involving people with disability across our organisations: within the board, advisory network, ambassadors and project staff.

For more information contact:

Darryl Steff

Chief Executive Officer

Down Syndrome Australia

Email: Darryl.Steff@downsyndrome.org.au

Website: www.downsyndrome.org.au

Prepared by: Erin Papps erin.papps@downsyndrome.org.au &

Jessie Spence jessie.spence@downsyndrome.org.au

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Consortium members

Down Syndrome Australia members

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List of Recommendations

I. The DSA consortium should be involved in the design of Targeted Foundational Supports as a specialist in early years and life transitions. II. Targeted Foundational Supports should be designed so that they can also be accessed by someone with an Individual NDIS supports or someone accessing mainstream supports, to allow supports in many settings. III. The interaction of Targeted Foundational supports and the re-design of the Early Intervention pathway for children must be aligned to recognise the way they interplay for the community. IV. The NDIA must not permit changes to NDIS Plans or Supports while Foundational Supports are being developed. No one should experience the removal of supports.

V. The Federal Government and State and Territory Governments must commit to further consultation on issues and design of both General and Targeted Foundational Supports which affect young children aged 0-9 years, particularly with families who are familiar with the system. VI. Foundational Supports should be straightforward to access and require only minimal information or referral.

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Introduction

It is common for many children in our community’s cohort to receive a prenatal or immediately postnatal diagnosis, though some may not be diagnosed until adulthood. However, whether an individual has a diagnosis or not, no two people’s needs are the same.

People  in the cohort we represent may present with  intellectual,  physical, and/or

neurodevelopmental conditions and health issues. For this reason it is important that Foundational Supports are provided based on individual functional assessment and need rather than diagnosis. These supports must be delivered as soon as possible in the early years to have the best chance of setting up a child for the best possible outcomes.

The DSA consortium is one of few DROs with significant experience in supporting children 0 9 years old (and particularly 0-3 years old) and their families, carers and kin in accessing what will likely be Targeted Foundational Supports. The DSA consortium organisations are often involved from the birth of a child and therefore deeply understand early intervention, and these skills and principles can be applied more broadly to supports for children with developmental delay. The DSA consortium holds deep expertise in this work and has valuable input.

Due to the presence of a permanent lifelong disability, we would expect all children in this cohort to be immediately accepted onto the NDIS for individual supports. However, the members of the DSA consortium believe that there is a role for community-based supports as Targeted Foundational Supports for this group as well, and especially for supports which might be designed for capacity and capability building in families, carers and kin (recognising that this work might overlap with General Foundational Supports).

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A new system of supports

In the consultation paper on Targeted Foundational Supports, the authors refer to the combination of supports from mainstream, General Foundational Supports, Targeted Supports, and individual NDIS Supports being appropriate for some children.

The DSA Consortium would like to ensure that children within our cohort have access to the most appropriate supports based on their individual need and that restrictions to access do not apply based on a disability “type” or “impairment”. These broad categories cannot take into account the specific needs of individuals and it might be that opportunities are missed for mainstream early intervention or for health-related disability supports. The variation in functional capacity within our cohort is significant and the supports which are navigated and directed from people within the community and with specialised expertise will be of integral importance. However we do concur that children should have access to General and Targeted Foundational supports alongside any individual NDIS Supports.

It is not possible at this point to be specific or detailed about which supports are likely to fall into each category of mainstream, General Foundational Supports, Targeted Foundational Supports, and NDIS Supports. This is primarily due to the fact that there has been a significant shift in the definition and practical application of the term ‘NDIS Supports’ with the application of the final lists of those supports which will be funded, and under which circumstances, not yet resolved. For some people in our community this continues to cause distress and confusion. By way of an example, specialised funded supports for chewing and swallowing, under the care of specialists, have been removed from the NDIS Supports list without a replacement. Practices like these reduce trust in the disability community for the level of understanding or concern that a person with disability and their parents, carers and kin will receive from Governments and other decision-makers.

The authors of the consultation paper have also said that:

“Targeted Foundational Supports are for children with developmental delay and their families, who need more assistance than mainstream services and General Foundational Supports. Targeted Foundational Supports are intended to:

  • help families better understand their child’s specific needs, how they understand their world and how to help their development

  • give more tailored, early intervention support to help the child develop in the area they are delayed.” (page 8, Consultation Paper)

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It is important to note that these supports should be delivered in conjunction with General Foundational supports, and in our experience, often this form of targeted early intervention is recommended or referred by someone delivering the equivalent of General Foundational Supports.

We would appreciate the opportunity to continue to talk with the Department of Social Services about how these interactions might operate, and how these Targeted Foundational Supports might interact with Individual NDIS Supports as well as mainstream supports.

Specialisation and Expertise

Working with babies and children, and their families is the core work of the DSA consortium due to the prevalence of early diagnosis in our cohort. Our organisations are often the first point of contact for families, carers and kin and remain the ongoing support network through an individual and their families’ lifetime. As a peak organisation, the Down Syndrome Australia Consortium is the only DRO at present who works in prenatal supports. This work has been undertaken by DSA consortium members for decades, and there is a significant body of resources, skills and expertise which has been developed. Recent consortia members have also provided this support to individuals and families but without the resources which Down Syndrome Australia has had through ILC and other funding arrangements. It is increasingly fraught to undertake this work with volunteers, especially where this support is best provided from within the community. This might mean that the continuing provision of expert work in the community requires a more specific funding arrangement than is currently provided.

In recognition of the expertise and role of Down Syndrome Australia, we produced a “What We Heard” Report for the Independent NDIS Review. This includes an in-depth discussion of supports and includes feedback and need for the 0-9 year cohort. DSA recommends that the development of General and Targeted Foundational Supports should include reference to this report, publicly available on the website for the Independent NDIS Review.

Changing NDIS Criteria

Recent reforms to the NDIS have used terminology such as “supports for disabilities which meet the eligibility criteria”. This sort of terminology opens the door for subsequent Governments and Departments to make changes to legislation, Rules or operational guidelines which might mean that all needs for NDIS participants might not be met through the NDIS. In this scenario, it might be that individuals with a Individual NDIS Supports are

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also accessing Targeted Foundational Supports. It is therefore important that DROs like the DSA Consortium who represent a cohort of people who might require supports from birth are involved in the design of both NDIS Supports and Foundational Supports.

In a section about recent changes to the NDIS Act, the consultation document states the following:

“The recent ‘Getting the NDIS Back on Track’ changes to the NDIS Act do not change a child’s participant status or remove their access to the NDIS.” (page 9).

While this statement may be technically true, this has not been the experience for the community and this statement is also unhelpful in recognising the amount of change being undertaken. There have been many cases of children within our cohort having had their status as people with permanent disability challenged and some have been removed from the NDIS, causing deep distress for families, carers and kin, and for the individual as well.

It is imperative that while significant reform work is being undertaken, there are no further changes to participant status, NDIS plans or funding, or the failure to fund services which are prematurely described by the NDIA as “Foundational Supports”. Disruption to the routines and lives of members of our community cannot be justified for small cuts to Government expenditure and these decisions must include DROs as well as families, carers and kin.

Reform in Early Childhood (Early Intervention)

While processes are underway designing General and Targeted Foundational Supports, there is concurrently reform in Early Childhood (Early Intervention). This work must be complementary, in particular to the development of Targeted Foundational Supports, and also recognise the different roles for different parts of the community, such as early childhood educators and allied health professionals.

In the consultation paper on Targeted Foundational Supports, the authors state:

“General and Targeted Foundational Supports will be established in addition to early intervention already provided through mainstream service systems.”

The DSA Consortium is concerned that in many regions and for many individuals, there are no early intervention approaches provided through mainstream service systems. As well as developing Foundational Supports, there needs to be a unified and consistent approach to developing mainstream services and rebuilding capability and resources which might have

been  lost.  Furthermore,  it  is  critical that there  is consistent definitions of Targeted

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Foundational Supports across Australia so that the possibility of a “Postcode Lottery” of supports depending on each State or Territories approach is not created.

The DSA consortium supports an approach to strategic design that is aligned with Action 1.12 of the Independent NDIS Review. At the time of writing the Government had not responded to the recommendations of the Independent NDIS Review or signalled that there would be a uniform operational development of all types of Foundational Supports.

Supporting families, carers and kin

Members of the DSA consortium will support both an individual with disability and their family, carers and kin over a lifetime. Examples of this in practice include connecting parents/parental figures with specialists such as allied health professionals; connecting parents with one another; teaching and practicing advocacy skills; and supporting families in

interactions  with  mainstream  services.  The DSA  consortium  also  recognises  the

intersectional needs  of  families, which might  include  connecting  with  appropriate

professionals; meeting cultural needs; and supporting children in out of home care.

While navigation will be the topic of future consultations, it is important to mention the role of DROs in service-finding for children aged 0-9. These specialised services can be difficult to discover and navigate, and while there may be a role for general disability advice, e.g., a Local Government service-finding role attached to other Local Government services for young children; there is also a role for existing services in the community running through DROs and DPOs. Services which support the early experiences of a child with a diagnosis will often be the same services which will support the early experiences of a child who does not yet have a diagnosis.

An important consideration is that family-based services should be provided in the local environment and targeted for all families, reducing the approach of singling out and stigmatising vulnerable parts of the community, such ‘children with developmental delays’ or ‘children experiencing family violence’. All services should include a range of children in the community and be accessible for all families, including attendance by health, allied health and community service specialists.

Supporting community and workforce

The DSA consortium organisations support understanding in the wider community about the disabilities we represent, and this extends to the Departments and NDIA when it comes to understanding the variation in the community and how supports can best be offered. The

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chromosomal conditions that our consortium represents are generally not well understood by most NDIA early childhood approach (ECA) workers and planners. Newborn babies are often given a NDIS Plan with only one or two developmental domains covered, despite the syndrome having evidenced functional impact across all 6 domains.

There is funding to connect and work well with peak DROs such as our consortium member

organisations, however  this  rarely  occurs,  with no  referrals from Government  or

Government funded organisations to some State or territory organisations.

Intended Outcomes

There are a number of intended outcomes listed for Targeted Foundational Supports. The DSA Consortium supports the intended outcomes listed. We recognise that some of these goals might be difficult to measure success in, however, Down Syndrome Australia has experience in reporting on activities around supporting individuals and families. Success should not be measured against cost, either through funding or by reduction of the cost of the NDIS. Qualitative measures can provide measures of success, such as the levels of interaction in the community, improvements to lives and even consistency with the experiences of other children within family groups (e.g., participating in community sports and other activities, experiences of life transitions).

The DSA consortium’s submission on General Foundational Supports (attached as an Appendix to this submission), discusses in more depth both the experience and types of supports that might be offered under Foundational Supports. Considering the overlap, we ask that you please read this submission. It outlines some of the projects and activities already being undertaken which could be continued and further developed as part of a Foundational Supports approach.

Issues which require clarity

It isn’t clear from the limited information available what it is possible to include in Targeted Foundational Supports for children aged 0-9. We believe that these supports should include children 0-9 who have individual NDIS Plans, such as children with Down syndrome and other chromosomal variations, who should have access to supports and therapies in the community. Certainly, there should be flexibility in place so that children with NDIS Plans are not limited to individual therapies in clinical settings. The DSA consortium would like to continue to engage with the Department of Social Services about Targeted and General Foundational Supports.

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We believe that it would be beneficial for the Department of Social Services, NDIA and DROs and other organisations to discuss further what is meant by ‘parental responsibility’. This is quite an unclear term which is used variously to describe simple and straightforward as well as onerous and complicated care activities as supports, depending on the circumstances. What might be ‘parental responsibility’ might differ across communities and depend on intersectional factors such as experience of poverty, family violence, behaviour support needs, use of restrictive practices or other elements. A unified approach to what is meant by this term and how it is applied to the funding and supply of supports would be extremely useful and improve the range of potential supports provided for families, carers and kin.

Recommendations

I. The DSA consortium should be involved in the design of Targeted Foundational Supports as a specialist in early years and life transitions. II. Targeted Foundational Supports should be designed so that they can also be accessed by someone with a Individual NDIS supports or someone accessing mainstream supports, to allow supports in many settings. III. The interaction of Targeted Foundational supports and the re-design of the Early Intervention pathway for children must be aligned to recognise the way they interplay for the community. IV. The NDIA must not permit changes to NDIS Plans or Supports while Foundational Supports are being developed. No one should experience the removal of supports.

V. The Federal Government and State and Territory Governments must commit to further consultation on issues and design of both General and Targeted Foundational Supports which affect young children aged 0-9 years, particularly with families who are familiar with the system. VI. Foundational Supports should be straightforward to access and require only minimal information or referral.

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APPENDIX:

Down Syndrome Australia Consortium

Submission on General Foundational Supports

5 December 2024

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About the Down Syndrome Australia Consortium

Down Syndrome Australia (DSA) was established in 2011 as the national peak body for people with Down syndrome and their families in Australia. Our vision is that people living with Down syndrome are valued and have full access to social and economic inclusion to reach their full potential.

Down Syndrome Australia is one of eleven National Disability Representative Organisations (DRO) and leads a consortium of organisations to represent people with intellectual disability

and their families and supporters, with a focus on  intellectual  disability caused by

chromosomal variations.

Our consortium members are:

  • Down Syndrome Australia and its’ member organisations - ACT Down Syndrome and

Intellectual Disability, Down Syndrome Queensland, Down Syndrome Tasmania,

Down Syndrome Victoria and Down Syndrome Western Australia

  • Angelman Syndrome Association Australia
  • Australian X and Y Spectrum Support
  • Cri du Chat Support Group
  • Fragile X Association of Australia
  • Prader-Willi Syndrome Australia
  • Smith-Magenis Syndrome Australia
  • Turner Syndrome Association of Australia People with these chromosomal variations experience intellectual disability varying from mild to severe, often accompanied by degrees of physical disabilities, higher rate of co occurring neurodevelopmental conditions and health issues.

It is important that the views of people with chromosomal variations and their families and supporters are represented in the development of policies and services that affect their lives.

For people with these chromosomal variations, their families and supporters play a significant role in their lives from advocacy to skill development and providing supports and care. They are a critical part of the lives of a person with intellectual disability and form an important part of our advocacy work.

14

All our work is within the human rights model of disability and informed by the Convention on the Rights of Persons with Disabilities (CRPD).

People with intellectual disability with a focus on chromosomal variations Across the DSA consortium, there are an estimated 20,000 people in Australia with these

chromosomal  variations  receiving support, information and  advice,  of which Down

syndrome is the most common.

Our Work

Down Syndrome Australia is also recognised as a Disability Representative and Carer Organisation (DRCO), working with the NDIS.

Many of our Consortium members deliver a range of Information, Linkages and Capacity Building (ILC) grants and other projects across the country. These projects span information, programs, services and other forms of community supports for people with disability, their families and supporters – including medical professionals and carers.

We ensure people with disability are at the heart of our work, utilising best practice principles such as genuine co-design and co-delivery across our projects, and supporting the community with accessible information. We have been internationally recognised for our commitment to organisational inclusion – actively involving people with disability across our organisations: within the board, advisory network, ambassadors and project staff.

For more information contact:

Darryl Steff

Chief Executive Officer

Down Syndrome Australia

Email: Darryl.Steff@downsyndrome.org.au

Website: www.downsyndrome.org.au

Prepared by: Erin Papps erin.papps@downsyndrome.org.au &

Jessie Spence jessie.spence@downsyndrome.org.au

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Consortium members

Down Syndrome Australia members

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Executive summary

Foundational Supports are described as “supports that offer people with disability a foundation to live a good life, and to be included in the community, regardless of whether they are in the NDIS or not”.1 In the absence of a government response to the NDIS Review or a formal Foundational Supports strategy, this submission outlines the supports we believe are essential to improve inclusion of all Australians with disability.

In this submission, Down Syndrome Australia, its partners and consortium members define General Foundational Supports as:

  • Information, advice and referrals;
  • individual and family capacity building;
  • community capacity building;
  • peer support;
  • self-advocacy, and
  • Support for decision-making. The DSA Consortium hopes that this consultation is just the first step in engaging with the disability community to design effective Foundational Supports and expects to be able to provide further input as General Foundational Supports are designed and developed.

Key themes from this submission include:

Inclusion of people with disability

  • It is extremely important we get Foundational Supports right, which can only be achieved if there is genuine co-design with people with disability and their

representative organisations.

  • Foundational Supports must be values-based and support inclusion in mainstream settings as much as possible.

A transitional approach to implementation

  • The introduction of Foundational Supports must be staged in order to ensure that coverage of supports is provided while the disability ecosystem changes.

1 Commonwealth of Australia, Department of the Prime Minister and Cabinet (2023) Working together to

deliver the NDIS - Independent Review into the National Disability Insurance Scheme: Final Report, October,

pp 54. 17

Successful delivery of supports through specialisation and expertise

  • Foundational Supports should be delivered by organisations that are connected to their community and can support people with disability and families according to their individualised needs.

  • Specialisation and expertise will be vital to the successful delivery of Foundational Supports. The DSA consortium are the experts in disabilities caused by chromosomal

    variations, and supporting children and families, from pre-natal support to

transitioning from school to adulthood. State and Territory Members of DSA have existed for many decades and engage people with Down syndrome as employees and on our board and employ people with lived experience in a range of roles from CEO to frontline service delivery.

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List of Recommendations

A transitional approach to implementation

  1. The government must adopt a transitional approach to General Foundational Supports. The current timeline of 1 July 2025 is not achievable for implementing a robust nationwide system of Foundational Supports. The Government must continue to fund projects that are working well in this space, such as proven ILC programs, and provide additional targeted funding, whilst appropriately designing and commissioning the longer-term solution in conjunction with the disability community.

  2. The NDIA must not make changes to NDIS participant plans either before the expected start date of 1 July 2025 or before Foundational Supports are operational nationwide, whichever is later, in order to prevent gaps in supports.

  3. Foundational Supports should be appropriately funded for long-term community building and not based on short-term, singular, disconnected projects.

Co-design in consultation

  1. Foundational Supports must involve people with lived experience of intellectual disability in their design and delivery, including DROs and DPOs.

  2. The Federal Government and State and Territory Governments must commit to further consultation on issues and design of both General and Targeted Foundational Supports which affect young children aged 0-9 years, particularly with families who are familiar with the system. An integrated and values-based system of Foundational Supports

  3. Foundational Supports must be centred around human rights of people with disability and consider the specific needs of people with Down syndrome and other chromosomal variations.

  4. Foundational Supports should be an integrated system of supports, and improve inclusion, increase social and economic participation and ensure all people with disability get the support they need.

  5. Foundational Supports should be straightforward to access and require only minimal information or referral.

  6. Foundational Supports should be accessible to people with intellectual disabilities and include the application of the principles of supported decision making in their delivery.

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Place-based General Foundational Supports built around specialisation and expertise

  1. Foundational Supports should recognise the specific local needs while providing a consistent national approach.

  2. Foundational Supports should recognise the extent of family involvement in the lives of people with intellectual disability and ensure that they are included in the provision of Foundational Supports.

  3. Specialisation and expertise will be vital to the successful delivery of Foundational Supports. The DSA consortium are the experts in disabilities caused by chromosomal

    variations, and supporting children and families, from pre-natal support to

transitioning from school to adulthood.

Successful delivery of supports through integration and community connection

  1. General Foundational Supports must be viewed as integrated and not separate unrelated supports that can be tendered out separately. A commissioning process should adopt a transitional approach that allows for genuine co-design of General Foundational Supports with the disability community. During this transition, existing projects that are working well should be extended, along with targeted funding to build on these services and supports.

  2. Foundational Supports should be delivered by organisations that are connected to their community and can support people with disability and families according to their individualised needs.

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Lessons from the past

A transitional approach to implementation

According to reviews of the NDIS, a significant number of issues which now require resolution were created by rushing through reform and failing to consider the impact of decisions – for example, with the dismantling of community-based disability supports as the NDIS was rolled out across the country.2 This includes the failure to understand how many people in the community were disabled and utilising services across different levels of Government. This gap has created a support system that is under resourced, poorly targeted or too generalist.

It is imperative that disability reform processes today don’t repeat the mistakes of the past.

The Government has commissioned a number of independent reviews and inquiries into the NDIS, the ILC program and disability systems, which produced thoughtful recommendations that should not be ignored. In particular, the NDIS Review outlined that the Foundational Supports reform should be a five-year undertaking, which included significant and deep co design with the community.

Many in the disability community spent significant time and effort participating in these reviews, only for there to be a disappointing response from the government, or no response. This has eroded trust and caused concern about forthcoming large-scale reforms to the disability support and services systems. There is a significant risk that if there is not genuine

co-design  and  a  well-managed  transitional  approach  to  commissioning  General

Foundational Supports that the supports will not meet the needs of the disability community and that programs, staff capacity and the expertise and stability of existing programs will be lost.

DROs cannot maintain the frenetic pacing of reform and the community is reaching levels of exhaustion, fear and disinterest in consultation and engagement processes.

In addition, there has not been the level of meaningful co-design with people with disability that was promised at the outset. Genuine co-design is vital to designing an ecosystem of supports that will achieve the intended outcomes in the consultation paper such as greater independence, autonomy and dignity.

2 Commonwealth of Australia, Department of the Prime Minister and Cabinet (2023) Working together to deliver the NDIS - Independent Review into the National Disability Insurance Scheme: Final Report, October. 21

Down Syndrome Australia and consortium echoes the concerns of other DROs that the Government has demonstrated an approach of not taking the opportunity to properly consult or co-design with the community and consider the feedback which we are providing.

Transition from Information Linkages and Capacity Building (ILC)

General Foundational Supports will primarily replace and build on the ILC grants program. Designing a new Foundational Supports system is an opportunity to address some of the issues which exist currently in the ILC program.

In particular, the Swinburne Centre for Social Impact’s review of the ILC program noted the need for long-term funding especially in ‘core’ activities where the need is inherently ongoing (such as the provision of information, advice and supports for new diagnosis) and the need to enable integrated, holistic activity (i.e., avoid siloing supports). The report also noted a great risk of the current ILC model is that the ‘stop-start’ nature of the funding reduces continuity of resources, staff and other infrastructure, and then results in an erosion of trust in the organisations who provide those services3.

In addition, the NDIS Review found that the current ILC program has generally funded short term supports, not provided adequate and effective supports, and has not sufficiently increased inclusion or made mainstream services more accessible.4

As well as risks there are opportunities. Grants can become an approach to encourage innovation in the design of programs or services, particularly if they are to be delivered in certain regions or for certain cohorts of people in the community. There is also an opportunity for investment in research and improving the evidence-base for supports. These are important aspects of disability sector which require investment.

The current timeline of 1 July 2025 is not reasonable to implementing a complete, robust nationwide system of Foundational Supports. The Department of Social Services must continue to fund ILC projects that are working well in this space, with appropriate, targeted additional funding, whilst appropriately designing and commissioning the longer-term

3 Wilson, E., Qian-Khoo, J., Campain, R., Brown, C., Kelly, J. & Kamstra, P. (2021). Overview of results:

Informing investment design, ILC Research Activity, Hawthorn: Centre for Social Impact, Swinburne

University of Technology.

4 Commonwealth of Australia, Department of the Prime Minister and Cabinet (2023) Working together to deliver the NDIS - Independent Review into the National Disability Insurance Scheme: Final Report, October. 22

solution in conjunction with the disability community; identifying specific gaps in provision of supports aligned with the goals of General Foundational Supports.

In addition, the NDIA must not make changes to NDIS participant plans that remove supports either before the expected start date of 1 July 2025 or before Foundational Supports are operational. For a NDIS participant, there should be minimal change and disruption to plans and no change to plans by LACs, planners, or NDIA staff because of General Foundational Supports until a support in the community can be positively identified by both the participant and the decision-maker for a Plan.

Information for Life: a model General Foundational Supports Program

Down Syndrome Australia has been delivering ILC funded National Information services to people with Down syndrome, their families, supporters and professionals, since 2017 (as a pilot) and 2019 nationally. This service delivers:

  • Telephonic, email and in person information/support sessions;

  • National and local webinars and workshops;

  • National resources and knowledge bank;

  • National website;

  • Online support groups and Facebook groups; and

  • Newsletters and information. DSA delivers these services in conjunction with our member and partner organisations across Australia. This provides the benefits of:

  • National co-ordination (Resources, Website, Knowledge bank, webinars)

  • Local delivery (email, phone, in-person support, workshops, visits, professional development)

This program helps address any geographic inequities such as inconsistent services and supports, and provides timely advice for families and supporters seeking out information and resources. It can also connect people with specialised services, some provided online, outside of an individual’s local area. Information for Life recognises Down syndrome as a lifelong disability, and addresses supports and information from prenatal to end-of-life.

This approach strengthens connection in the community and provides ongoing opportunities for informal supports, peer support and connection, and encourages people with Down syndrome in the community to connect into other programs, e.g., capacity building programs in leadership or on issues like health or employment. The

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ongoing benefits are significant and can be hard to capture as they include both quantitative and qualitative benefits.

“Our family have been members of ACT Down Syndrome & Intellectual Disability since our daughter Sarah* (name changed for privacy reasons) was born in 1997. In Sarah’s early years the Association provided guidance with childhood intervention, health and education issues. It also provided an opportunity to meet other parents dealing with similar issues. The Association has always helped us to feel less alone with the challenges of raising a child with an intellectual disability, both through direct advice and through networking with other member families.

During  the COVID pandemic  Sarah’s  functionality and mental  health  deteriorated

significantly. Since that time the Association has helped our family to identify and find treatment for Sarah’s complex behavioural challenges, from psychiatric care to occupational therapy to emotional support for her and our family. The ACTDSID staff researched options that I was unable to myself through their experience with others in similar circumstances. People with Down syndrome face a complex set of challenges as they navigate adult life and the public health system is simply not resourced to help families with these issues. I simply would not have been able to help Sarah get the help she needs without the support of the staff at the ACTDSID.”

Recommendations

  1. The government must adopt a transitional approach to General Foundational Supports. The current timeline of 1 July 2025 is not achievable for implementing a robust nationwide system of Foundational Supports. The Government must continue to fund projects that are working well in this space, such as proven ILC

    programs, and provide additional targeted funding, whilst appropriately

designing and commissioning the longer-term solution in conjunction with the disability community.

  1. The NDIA must not make changes to NDIS participant plans either before the expected start date of 1 July 2025 or before Foundational Supports are operational nationwide, whichever is later.

    1. Foundational Supports should be appropriately funded for long-term

community building and not based on short-term, singular, disconnected projects.

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Foundational Supports consultation

Co-design in consultation

The DSA consortium has been involved in the consultations on Foundational Supports as an organisation and has received feedback from our community about the consultations they have attended. Unfortunately, the consultation has not met community expectations or the principles of Best Practice Consultation, as published by the Office of Impact Analysis5.

Much of the confusion has arisen because there has been no comprehensive Government response to the Independent NDIS Review and its findings - a significant reform process of which Foundational Supports constitutes only one part. Without the whole picture, there has been significant confusion as to what Foundational Supports are and how they will interact with other supports and services. Many in the community perceive it as a program that will remove choice and control for NDIS participants by removing supports from the Scheme with no alternatives in place.

Overall, the community was provided with little information about what Foundational Supports are likely to be, and there was a failure to provide concrete examples which would be useful within many parts of the disability sector. Without a Foundational Supports strategy or similar governing document, community members were asked to provide feedback on how Foundational Supports should be designed and delivered but with no options to choose from about what might be possible. In this regard, the messaging around Foundational Supports has been very unclear and important feedback has likely been missed due to the way this information has been communicated.

Further, the manner in which consultation was undertaken was inaccessible to many people in the community. DSA’s members supported people with disability in the community to attend in-person sessions run by The Social Deck. While an Easy Read was provided, it did not support understanding for those people who attended.

Similarly, we understand that consultation with particular cohorts has been neglected in some regions. There has been a significant under-representation of parents and families of

children and young people with  intellectual  disability, a group whose  lives may be

significantly affected by the cumulative effects of legislative change and reform. Parents,

5 Commonwealth of Australia, Department of the Prime Minister and Cabinet, Office of Impact Analysis (2023) Best Practice Consultation.

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families and carers provide significant lifelong support and must have input into the systems which are designed to support them. We would like to see targeted consultation with this group which recognises their limitations in time and energy.

The Government, and particularly the Department of Social Services, have again failed to genuinely co-design, co-produce and even properly consult with people with disability and their families and supporters.

Recommendations

  1. Foundational Supports must involve people with lived experience of intellectual disability in their design and delivery – including DROs and DPOs.

  2. The Federal Government and State and Territory Governments must commit to further consultation on issues and design of both General and Targeted Foundational Supports which affect young children aged 0-9 years, particularly with families who are familiar with the system.

Designing Foundational Supports today

An integrated and values-based system of Foundational Supports

A system of General Foundational Supports would be a fundamental restructuring of the disability support and services system as we know it. Given this, it is vitally important that the values behind Foundational Supports centre the human rights of people with disability under the United Nations Rights of Persons with Disability (UNCRPD). The system must be designed around the principle of fair and equitable access to mainstream community settings with the goal of meaningful inclusion that supports belonging. In addition, the person with disability must always have choice and control over their lives.

The system of Foundational Supports must be an integrated system of supports, because we know separate siloed systems of supports neither reflect the complexity of people’s lives nor do they achieve good outcomes over a lifetime. If well designed, Foundational Supports could be an opportunity for people with disability to build social connections, be part of their community, pursue their interests and fund employment through peer support, self advocacy and supported decision making.

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Foundational Supports can provide a pathway for people with Down syndrome and chromosomal variation to connect with their community by reducing the use of segregated or institutional services and supports, and facilitate the use of community and mainstream services and supports.

Recommendations

  1. Foundational Supports must be centred around human rights of people with disability and consider the specific needs of people with Down syndrome and other chromosomal variations.

  2. Foundational Supports should be an integrated system of supports, and improve inclusion, increase social and economic participation and ensure all people with disability get the support they need.

  3. Foundational Supports should be straightforward to access and require only minimal information or referral.

  4. Foundational Supports should be accessible to people with intellectual disabilities and include the application of the principles of supported decision making in their delivery.

Information, advice and referrals

Down Syndrome Australia, State and Territory organisations and consortium members have been providing information, advice and referrals to our community for decades. Our experience has shown that the best way to provide these supports is using an integrated service delivery model with experience and knowledge in the specific needs of Down syndrome or other intellectual disability focused on chromosomal variation. Importantly a key element of this support is peer groups that can provide individualised support and build community with people seeking advice. For example, the program Information for Life that is explored above has supported many families through complex transitions and connects them to community.

Digital solutions or generalist advice and information for any person with a disability is not useful, and can in fact be harmful for people and families unfamiliar with disability services and supports or with accessibility needs.

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Though we offer specialised advice for our cohort, we operate with a ‘no wrong door’ approach by supporting any person with intellectual disability and referred on to a cohort specific organisation if appropriate. We have strong relationship with other in the space including consortia members, and other DROs, notably Inclusion Australia and its members, PWDA, WWDA, NEDA, AFDO, CYDA as well as specialists such as allied health professionals, making these warm handoffs seamless and supported.

Capacity building

We believe capacity building is an essential part of General Foundational Supports. DSA and our member organisations have been a part of a range of successful capacity building supports and know capacity building must be person centred and wholistic. Over the past decade DSA has successfully run different capacity-building projects for individuals, families and the community, most notably the Health Ambassador and Employment Ambassador projects. These programs provide peer supports as well as individual and community capacity to work with people with Down syndrome. Other individual capacity building projects have included the Pathways to Independence Project, and a new project, Supporting my Rights. While these projects have received short term funding, they represent a core need in capacity building in the community and would be well utilised if they were funded on a longer-term basis and open to other members of the community where appropriate.

The DSA Consortium takes its role as a model employer seriously and always looks for opportunities to provide meaningful employment and meaningful roles for people with Down syndrome and intellectual disability. As projects finish, DSA and its members look for ongoing opportunities for project staff, and this has included achievements such as attending the United Nations Conference Of State Parties (COSP) as part of the Australian delegation and joining boards and advisory groups. This approach to building capacity improves the whole community, functioning to assist the goals of Australia’s Disability Strategy.

Recognising the important role of families and carers (used here to include extended families, kin, mob and out of home carers), we see important work to be undertaken to build capacity in a whole-of-family approach. This includes supporting families in hospitals and other clinical settings, providing support groups to discuss and share medically complex issues as well as everyday issues, and including siblings in activities and events. These capacity building supports can be emotional as well as practical. This constitutes the core work of many diagnosis or cohort-based organisations where lifelong and permanent disability requires deep family investment and community building.

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Case Study: Health Ambassadors

DSA’s Health Ambassadors are a group of individuals with Down syndrome, who work to inform health care workers about how best to include people with Down syndrome in their own health conversations.

DSA Health Ambassadors represent each State and territory. The most common drive amongst these self-advocates is to educate health professionals on how to better communicate with people with Down syndrome.

The Health Ambassadors work to improve health outcomes for people with Down syndrome in Australia by:

  • Informing and working with health care workers and those studying to become health workers, on how inclusive communication makes a positive difference to outcomes

  • Working with health care workers in all settings to educate them about Down syndrome

  • Telling their health stories and how good communication can make a difference

  • Presenting to health are workers and students

  • Co-designing resources for health care workers to use

  • Taking on advisory roles on health issues and research. “When I understand it makes me feel more comfortable and I can answer your questions better. This will help any health care worker who is treating me to find the right problem and do their job better”

Kimberley Adams, DSA Health Ambassador

Image: a person with Down syndrome with red hair and glasses is speaking a lectern with a support person in a floral dress standing next to her

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A successful system of Foundational Supports

Place-based General Foundational Supports built around specialisation and expertise

In the absence of a government response to the NDIS Review or a formal Foundational Supports strategy, this submission outlines the general supports we believe are essential to improve inclusion of all Australians with disability.

General supports include:

  • Information, advice and referrals;
  • individual and family capacity building;
  • community capacity building;
  • peer support;
  • self-advocacy, and
  • Support for decision-making. These supports must be viewed as integrated and lifelong supports that are not short-term or project-based. To ensure they best meet the needs of people with disability, the supports must be local and place-based services that support people to link in with their local services and build networks within their local communities.

People with disability go to their trusted organisations to receive these supports. Historically there has been an overreliance on volunteers and volunteer organisations to provide these supports. Through Foundational Supports there is an opportunity to fund this work appropriately to allow for fair and equitable access.

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Image: 8 members of the Down Syndrome Advisory Network (DSAN) pose in a group

Case Study: The Angelman Syndrome Association of Australia Inc

(ASAA)

ASAA provides many avenues of support for our members that lead to better outcomes. These include:

  • Connection to and recommendations of specialists
  • Promotion of mainstream supports (Health resources/Health passports, Nurse
  • Developing rare disease-specific resources
  • Recommendations of services, equipment, and products that have worked
  • Family Support Crisis funding
  • Phone support
  • Conference information - including optimising mainstream supports, milestone

transitions, Guardianship, Disability Support Pension, Special Disability Trusts,

post-school transitions etc

  • Newsletters providing updates on relevant legislation and policy changes, events and opportunities

    • Community connection and engagement through family-centred events -

International Angelman Day Picnics,

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  • Carer Support - Mums Annual Retreat, Dads Retreat “The thing about ASAA is that they are family members who understand the complex challenges of Angelman syndrome - they have the networks, connections, and links to resources and organisations who know our families and get our experiences. I know that the information they provide is trusted and correct. No question is too silly and everyone is so ready to help.”

Down Syndrome Australia undertakes National Information Surveys to ensure that the programs we undertake are meeting need in the community. In 2024 people with Down syndrome told us what supports they need and what’s missing. Survey respondents said that they:

  • Need information on employment and NDIS, social activities, health, rights, safety, communication, and learning new skills.

  • Need support with communication, learning new skills, social activities and health. People want more support around money, their rights and making choices.

  • Experience barriers to inclusion such as attitudes, access issues, and the lack of the right supports and support people.

  • Receive information from parents, support people and talking to peers (other people with Down syndrome).

    • Prefer information in the following formats: group activities, videos, direct

conversations, and Easy Read.

Down Syndrome Australia, State and Territory organisations and consortium members have skills and expertise in providing these supports, which will be vital to the successful delivery of Foundational Supports to our community. Our consortium are the experts in Down syndrome and chromosomal variations and supporting children and families, from pre-natal support to transitioning from school to adulthood. The uniqueness of our cohort is that we are one of very few organisations who provide pre-natal support and support for children with disabilities aged 0 –5 years and their families.

We have built community trust after many years working with on the ground with the community. Working together, we represent the diverse needs of up to 20,000 people with disability in Australia, whose disabilities range from intellectual to physical; sensory and neurodevelopmental. Only organisations such as ours can deliver these supports. Large, cross-disability organisations such as those used to deliver the NDIA Partner in the Community services could not deliver these services successfully.

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Recommendations

  1. Foundational Supports should recognise the specific local needs while providing a consistent national approach.

  2. Foundational Supports should recognise the extent of family involvement in the lives of people with intellectual disability and ensure that they are included in the provision of Foundational Supports.

  3. Specialisation and expertise will be vital to the successful delivery of Foundational Supports. The DSA consortium are the experts in disabilities caused by chromosomal

    variations, and supporting children and families, from pre-natal support to

transitioning from school to adulthood.

Commissioning process Successful delivery of supports through integration and community connection

Short-term approach In the short term the government must adopt a transitional approach to Foundational Supports, and continue to fund ILC projects that are working well in this space. The government must also learn from the mistakes of past ILC extensions and ensure that these decisions are made and communicated well in advance of the expiration of funding so that organisations do not lose key staff and can continue to effectively provide the services and supports.

Long-term approach

A  vital part of successfully delivering Foundational Supports  will be finding the right

organisations to provide these supports to people with disability. The DSA Consortium brings a long history of providing the supports considered to be General Foundational Supports including the fact that, in conjunction with our Member and Partner organisations, we:

  • Have significant experience in delivering projects with a national focus and local

delivery (such as National Information Services, Individual Capacity Building Projects

and Peer support activities).

  • Understand this cohort of people with intellectual disabilities and their families and professionals that work with them.

  • Are one of the best at peer support activities and supports, particularly as they involve families and carers.

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• Have significant experience in including people with lived experience in our

organisation and in our work; including in paid employment with open wages.

  • Health Ambassador program The DSA Consortium expects that any commissioning processes would takes a strategic view of the needs and organisations available across jurisdictions and disabilities to make best use of them as recommended by the Centre for Social Impact at Swinburne University in their review of the ILC Program in 2021.

The DSA Consortium would be best placed to provide General Foundational Supports for

people  with chromosomal  variations.  All  consortium members  are  highly  trusted

organisations and interact with our communities at all life stages from prenatal to end of life. There are a range of ways this could be supported through funding, including a hosting or auspicing model where a peak organisation such as Down Syndrome Australia hosts or auspices smaller grassroots groups such as our consortium members to receive operational funds and administrative support to deliver General Foundational Supports to their communities. The advantage of a model such as this is that it allows for the funding and support of a wide range of organisations best placed to deliver these supports, and reduces the overall contractual burden on Government.

It is important to note if there was an appropriate transition period and notice ahead of this change, it would allow organisations to keep staff with institutional and community knowledge to provide these supports, rather than a period of uncertainty which will mean many organisations will lose capacity and have to start from scratch.

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Image: a woman with Down Syndrome in a pink jacket is having a conversation with another person in a suit and smiling.

Recommendations

  1. General Foundational Supports must be viewed as integrated and not separate unrelated supports that can be tendered out separately. A commissioning process should adopt a transitional approach that allows for genuine co-design of General Foundational Supports with the disability community. During this transition, existing projects that are working well should be extended, along with targeted funding to build on these services and supports.

  2. Foundational Supports should be delivered by organisations that are connected to their community and can support people with disability and families according to their individualised needs.

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