Submission:

NDIS Amendment (Getting the

NDIS Back on Track No. 1) Bill 2024

Codesigning a more inclusive, connected and sustainable

ecosystem for people with disability in Australia

May 2024

redacted

redacted: s47F - Personal privacy

[Date]

About Down Syndrome NSW

We are pleased to make a submission to the Standing Senate Committee on Community Affairs in relation to the NDIS Amendment (Getting the NDIS Back on Track No 1) Bill 2024 (herein referred to as the “proposed NDIS Amendment Bill”.

The Down Syndrome Association of NSW was established in 1980 by parents of young people with Down syndrome. As the children of the founding members grew to adolescence and adulthood, so too our services extended to all life stages. We now provide information and support, advocacy, capacity building workshops, training in schools, community participation programs, pre-natal expert advice, new parent resources and support and specialist employment preparation and connection at every stage of life.

We are an enthusiastic team of professionals with expertise in our relevant fields of service provision, support and advocacy. The majority of us have lived experience with a family member with Down syndrome, others bring a range of expertise and industry experience. We are here at every step – all working together to help our members with Down syndrome achieve their full potential.

Introduction …………………………………………………………………………………………. 4
What Our Members Say About The NDIS ………………………………………………….. 5
- Survey Snapshot ………………………………………………………………………………………………………. 6
Key Feedback: NDIS Amendment (Getting the NDIS Back on Track No 1) Bill 2024 ………………………………………………………………………………………………….. 14
- Down Syndrome Matters …………………………………………………………………………………………. 14
  - Nothing About Us Without Us …………………………………………………………………………………… 15
  - See The Person, Not Just The Disability ……………………………………………………………………….. 16
- The Sum Of Its Parts ………………………………………………………………………………………………… 20
- Advocacy Organisations: The (Super) Glue …………………………………………………………………… 21
- Quality and Safety ………………………………………………………………………………………………….. 23
- NDIS Review ………………………………………………………………………………………………………….. 23
Recommendations ………………………………………………………………………………. 24
- What We Support …………………………………………………………………………………………………… 24
- What We Seek ……………………………………………………………………………………………………….. 25
About Down Syndrome ………………………………………………………………………… 26
Our Important Work: Down Syndrome NSW …………………………………………… 29
Our NDIS Engagement: Down Syndrome NSW …………………………………………. 31
Easy to Understand Guide to the NDIS Review ………………………………………… 55
NDIS CEO Commentary ………………………………………………………………………… 64
About the NDIS: Down Syndrome NSW Fact Sheet …………………………………… 66
NDIS Checklist: Down Syndrome NSW ……………………………………………………. 68
Our Impact: Down Syndrome NSW Impact Report …………………………………… 70

Introduction

Down Syndrome NSW is pleased to provide input into the proposed NDIS Amendment Bill.

Following on from our significant involvement in consultations, community catch ups and forums, this proposed NDIS Amendment Bill presents an opportunity to better align the principles, outcomes and mechanics of the NDIS with the original intent of the scheme and to better embed the human rights of people with disability.

In a world that is becoming increasingly homogenised, Down Syndrome NSW plays a key role in supporting, informing and advocating for people with Down syndrome, their families and carers. Our community shares unique experiences, synergies and a strong sense of connection.

From our over 40 years in the advocacy space, it continues to be clear to us (and increasingly so in recent years) of the need for Down syndrome specific expertise and advocacy. We do not know how many people in Australia have Down syndrome and our knowledge of the world’s most common genetic condition remains below international standards. This creates a gap in capability to understand and meet the needs of people with Down syndrome.

Central to the success of this reform is the role that trusted, credible and longstanding advocacy organisations like Down Syndrome NSW play in ensuring the voices of all people with Down syndrome and their families are heard, in line with the intent of the NDIS.

In canvassing the views our members, attending consultations in NSW, conducting our own surveys, focus groups and drawing on our expertise and own lived experience, we offer the following feedback in relation to the proposed NDIS Amendment Bill to ensure it best enshrines what a high quality, sustainable, person centred NDIS looks like for all Australians.

What Our Members Say About The NDIS

Down Syndrome NSW proudly represents over 5.500 people with Down syndrome and intellectual disability and their families. Consultation is at the heart of all we do – their voices matter because our loved ones with Down syndrome matter.

Key to consultation is the provision of accessible information in a variety of easy to understand formats, in line with the UN Resolution on Easy to Understand Communication passed in March last year. We work with passion and pride to empower people with Down syndrome and intellectual disability to meaningfully engage.

The NDIS is revolutionary, there’s no doubt about it. Not just on home soil, but so too internationally where our colleagues often ask us abut the NDIS, its philosophy, its mechanics and how it was made possible.

The twists, turns, trials and tribulations of the past ten years have taught us a lot and there’s no better to tell us of their experiences than people with disability themselves.

With a revolution, comes evolution and Down Syndrome NSW was pleased to provide input to the NDIS Review. In a survey we conducted in 2022, 92% of people said that the NDIS had changed their lives for the better, that it was better than the pre-NDIS days. The NDIS has provided greater choice, control, opportunities and possibilities. Though, not without complexity, variability, frustration and deviation from its original intent which has in turn diminished public trust and most importantly, not optimised participant outcomes as well as it could – and should.

From July 2022 to June 2023, we surveyed our vibrant, connected and engaged community of people with Down syndrome, parents and siblings to better understand their experiences of the NDIS and ensure that their voices are heard.

This Survey Snapshot details an uplift of the raw survey data for the purposes of informing the NDIS Review.

In our submissions to the NDIS Review based on our member feedback, we advocated that the principles enshrined in the social model of disability are adopted by the NDIS Review to ensure that there is a responsibility on all levels of government, agencies, organisations and communities to actively and authentically include and support people with disability and enact change, rather than simply expecting people with disability to fight to have a voice with little or no impact. We advocated for a holistic approach to the full ecosystem of change, as it Is only then that we will achieve lasting impact.

Survey Snapshot

Key Feedback: NDIS Amendment (Getting the NDIS Back on Track No 1) Bill 2024

The NDIS matters because our loved ones with Down syndrome matter.

Turning to the specifics of the NDIS Amendment Bill, we provide the following high level feedback and recommendations for amendment, clarification or further consideration.

Down Syndrome Matters

There are approximately 15,000 people with Down syndrome in Australia. Alarmingly, we do not know the actual number of people with Down syndrome (despite it being relatively easy to diagnose) due to poor data collection – something Down Syndrome NSW is working on through the launch of the Australia’s first Down Syndrome Institute for research and medical care.

Down Syndrome is not just an intellectual disability

By virtue of the triplication of the 21st chromosome, people with Down syndrome have unique functional, medical and neurological biomarkers that impact their daily lives. Equally so, all people with Down syndrome are unique individuals with strengths, passions and interests.

The latest NDIS Dashboard on Down Syndrome published on 30 June 2023 presents the following data for participants with Down syndrome:

11,617 participants have Down syndrome as their primary disability, representing 2% of the scheme participants
99% of access decisions for applicants with Down syndrome aged 18 years and under resulted in the applicant joining the NDIS
$1.3 billion of paid supports were provided to participants with Down syndrome, compared to $1.11bn in the previous year, an increase of 17%
$112,600 was the average payment for a participant with Down syndrome, an increase of 16% compared to the previous year
81% of participants with Down syndrome aged 15 and over indicated the NDIS had helped to improve their choice and control at their latest plan reassessment, which is an 11 percentage point increase from their first review at 71%
Of the 263 participants with Down syndrome who joined the Scheme in the year ending 30 June 2023, 79% (208) were aged 18 years and under. 65% were 6 years and younger.

The early days are precious

Down Syndrome NSW along with our early intervention partners have noticed that babies with Down syndrome are generally accessing early intervention later than previously. There has been a shift from seeing babies with Down syndrome, to now seeing them for the first time at around 18 months. The reasons for this are unclear though are likely a combination of delayed NDIS assessments and funding which are reported to us frequently, as well as lack of collaboration with health.

We welcome the proposed early intervention pathway, the focus on giving all children the best start through specialised interventions and we recommend that Down Syndrome NSW is actively involved in the codesign of the rules.

Nothing About Us Without Us

Codesign matters, yet is an oft used term without successful practical application in numerous contexts. Down Syndrome NSW strongly supports

For people with Down syndrome and intellectual disability, considerations for accessible, suitable, meaningful codesign can be different to their peers with other disabilities. Enter expert organisations like Down Syndrome NSW to build capacity, enable self agency and provide trusted support.

Engagement in the NDIS Review has been a priority for Down Syndrome NSW, in line with our Strategic Plan as well as the fact that around 80% of people with Down syndrome are on the NDIS.

What great codesign looks like

The NDIS was borne from codesign and a strong campaign through Every Australian counts and it is this principle that must remain at the heart of the scheme and proposed reforms. Great codesign is:

Embedded in daily practice, not an add-on or nice-to-have but a must have;
People with disability are empowered to exercise their right to influence decisions on issues that impact them;
Accessible, intentional, respectful, empathetic involvement is key;
People with disability are treated as equal partners;
The process is iterative, tested, trialled and refined over time;
A variety of communication, facilitation and access methods are employed.

Particularly for people with Down syndrome and intellectual disability to engage, additional tailored supports are needed.

Down Syndrome NSW recommends this is factored into any codesign process to ensure diverse representation and meaningful engagement which in turn will drive better outcomes for all.

See The Person, Not Just The Disability

Down Syndrome NSW supports the move away from primary and secondary diagnosis, towards a more whole of person approach where support needs are the focus.

The plan and the funds: get it right the first time

One key pain point for our members is the plan and the funding. Down Syndrome NSW strongly supports getting the plan and budgeting process right. In the current system, incorrect or funds with misallocated funds (either by total quantum or category of funding allocation) is one of the biggest issues facing participants and their families, causing stress, cost and at times, debilitation of conditions. For us too, much of our time and cost is spent supporting families on this. Whilst we don’t have the answer or perfect tool to recommend, we do have recommendations on how to get there, together.

Rigidity and variability

Down Syndrome NSW welcomes to removal of categories of funding. For many of our members in the current NDIS, allocations between core funding and capacity building funding are pain points.

So too, great variability exists between plans and funding allocations for individuals with similar circumstances and support needs. Down Syndrome NSW supports a more robust and equitable assessment process to address this. We have a significant number of members who runout of funds prior to the end date, as well as a small number of members who cannot expend all their funds. The gross variability in the system, however, leads people to hold onto what they have been allocated for fear of being drastically reduced.

Appeals

Related to this is the appeals process which, whilst backlog has reduced in recent years, remains adversarial and complex.

A current complex appeals process however does not mean that one is not needed. The proposed NDIS Amendment Bill contains increased powers to the CEO and Minister. Down

Syndrome NSW recommends that appeal mechanisms are strengthened in the current

proposed NDIS Amendment Bill to provide certainty, clarity and reassurance to participants and their families.

Down Syndrome NSW recommends that the proposed NDIS Amendment Bill is amended to state that the current right to merit review remains and covers support need assessments.

This recommendation is in line with the submission from the NSW Disability Advocacy Network submission, to which Down Syndrome NSW is a signatory. On the topic of appeals, it states:

The Bill grants discretionary powers to the NDIS Minister and NDIA CEO. Our primary concern is that discretionary powers could lead to arbitrary decision-making and unfair treatment of NDIS participants without clarity about safeguards and accountability mechanisms.

The Bill allows participants to challenge their statement of participant supports, including the budget, but introduces new processes that cannot be reviewed internally or externally. Importantly, needs assessments cannot be reviewed under section 99 of the NDIS Act, preventing participants from contesting inadequate assessments that may lead to insufficient budget allocations. We are concerned about ensuring the Navigator role is properly equipped with the training and appropriate skills, knowledge and qualifications.

The Bill lacks clarity on when or if participants can request replacement assessments, leaving important decisions to be determined by new NDIS rules without avenues for review or challenge. Clear legislation is needed to ensure participants have timely access to their assessment reports and the ability to request new assessments when necessary to inform accurate budget allocations. In its current form, the Bill does not address or provide clarity on whether merit review will apply to new decision-making powers.

On 8th May 2024, the Minister for the NDIS Bill Shorten and the NDIA CEO Rebecca Falkingham attended a NDIS Roundtable with NSW Disability Advocacy organisations and responded to our concern about the accountability mechanisms by stating that the right to merit review would apply to new powers and the NDIS Minister said: “In relation to these additional powers, existing merit review continues in the act. The merit review will remain in the scheme; however, I am happy to consider amendments to clarify this in the legislation”.

Overshadowing

For people with Down syndrome, there are a range of cooccurring diagnoses and broader considerations that need to be taken into account in any support needs assessment. Overshadowing is common for our community – whereby health and other professionals deduct everything to a “Down syndrome issue” when in fact it can be totally unrelated.

This bias aligns with research

This bias aligns with research by Dr Brian Chicoine MD, founder of the world leading Adult Down Syndrome Center in the US and accomplished author on Down syndrome with whom we work closely, who wrote the following in 2022 in relation to healthcare. We include this observation here as it has equal importance in the context of support needs assessment tools and changing needs over time for all disability types, where assumptions are made on the basis of diagnosis over support needs:

“Many families have reported that, when they have told a health care provider about a symptom their loved one with Down syndrome is experiencing, the provider has, in effect, said, “It is just Down syndrome.” No further assessment or treatments were offered. The symptom was attributed to Down syndrome, and it was assumed there was no treatment. Overshadowing is a term used to describe this misdiagnosis or underdiagnosis of co-occurring conditions. When assessing a change in health in a person with Down syndrome, it is very important to consider that people with Down syndrome often have co-occurring physical and mental health conditions. A thorough assessment of possible causes has great potential to improve diagnosis and treatment. Accepting dysfunction without assessing for and promoting measures to optimize function can be considered a form of overshadowing. More study is needed to better understand what features of impaired health in people with Down syndrome may be prevented or optimised.”

“Label Me Able”

Drawing on the title of a campaign Down Syndrome NSW pioneered in the 1990’s, changing the paradigm matters. Assessing support need and impairment is no doubt important, though Down Syndrome NSW recommends that this is matched with a strengths based approach through a possibility lens, coupled with forward planning, preventative planning and a lifelong lens.

“Yes, I still have Down syndrome”

An often reported pain point in the current system is having to prove your disability over and over. For some, this makes sense. For others like Down syndrome, it only serves to further exacerbate the lack of capability within the system. Down Syndrome NSW welcomes the extension of plans which allows for greater security, continuity and less administrative burden for participants, families and the NDIA. However, we recommend that clear, easy and timely mechanisms are put in place to account for changing needs.

Considerations for a Needs Based Assessment Tool for People With Down Syndrome

Central to this is the allocation of a navigator that is an ally to participants for the long term, who gets to know them and their story, and who is accessible – something that workforce c churn has not yet allowed the NDIS the realise. Where a supports needs assessment can be transferred across foundational supports, education, health, transport, and other areas, Down Syndrome NSW recommends this as a foundational principle.

Key considerations as articulated by our members include:

Down syndrome is well understood from a functional, social, neurological perspective as well as cooccurring diagnoses balanced with an individual strengths based approach
The capacity, capability qualifications and familiarity of assessors is critical
A wholly co-designed, co-implemented, co-evaluated assessment tool
A fair, transparent and equitable co-designed process of funding allocation, with testing to occur prior to rollout
Placing the person with Down syndrome firmly at the centre, not their parent, carers or sibling
Engaging parents, carers, siblings as important contributors and partners
Adopting a whole of person and whole of ecosystem approach to assessment
Full transparency and access to all information with input from participants at all stages of the process (including a draft needs assessment and draft funding allocations) in accessible and easy to understand formats
An open dialogue and two way discussion approach at all stages of the process, especially when the funding is allocated, we recommend a draft is first presented
Clear, easy to access and timely process for appeals (and the steps before appeals) thats focuses on de-escalation and resolution
Clarity on what can and cant be purchased, whilst maintaining choice and control
Investigating synergies with the Comprehensive Health Assessment Program (CHAP_ -a tool designed to prompt a comprehensive health assessment for adults with intellectual disability, developed by Professor Nick Lennox of the University of Queensland, with specific questions for Down syndrome. Whilst for health assessments, we recommend this as a necessary input.
Researching international best practice on supports needs assessment tools
Accounting for changing needs over time through an accessible, easy and timely mechanism
The capacity, capability and long tenure of a dedicated navigator for every participant should they choose (and similar for all providers to have an account manager equivalent as a single of contact)

Assessments to be funded
Removal of APTOS as the interim measure, as it is not fit for purpose, as also raised in the NSW Disability Advocacy Network submission and the Queensland Disability Network submission
Embedding of the full UNCRPD in all aspects, as well as the recent UN Resolution on Easy to Understand Communication

The Sum Of Its Parts

In this reform rich environment, the quantum of change is equally exciting and exhausting.

With the very best of inclusive intentions, the NDIS has unintentionally become an exclusive system “over there” for people with disability. We hear of new parents of babies with Down syndrome in hospital being handed NDIS booklets and told that is their system now. In this, The role of

Intersectionality is the buzz word of late and rightly so – the tapestry of systems that our loved ones with disability traverse is wide, though not all are inclusive nor see disability as their core business. This, despite 4.4 million (or 20%) of Australians having a disability, and only 646,000 of these are NDIS participants. This leaves 3.8 million Australians with disability largely without services or supports, or 80% as referenced in the Disability Advocacy Network Australia’s (DANA) Priorities Project Report launched on 8 May 2024.

Mind the gap

The NDIS isn’t - and shouldn’t be - for everyone. Whilst its insurance, safety net principle remains of utmost importance, so too is the ability for people to exit the NDIS, or not enter it at all. To achieve this, the newly coined foundational supports come to the fore and comprise a critical puzzle piece in the new ecosystem upon which the proposed NDIS Amendment Bill must seamlessly align, else people will fall through the cracks. This is a real fear for our members. Particularly for our community, where an estimated 80% of people with Down syndrome are on the NDIS, we are consulting deeply on what this foundational supports system looks like.

People don’t live their lives along national/state funding bounds

As a state based peak body, we see this national v state / disability v mainstream tension all too often on a daily basis and our funding constructs to date have hampered not helped us to take a whole of person approach.

Down Syndrome NSW Supports Alignment With Existing Legislative Frameworks

Down Syndrome NSW supports the alignment of the proposed NDIS Amendment Bill with existing important legislative frameworks, which ensures consistency and synergy from the outset, namely:

Australia’s Disability Strategy 2021-2031
Disability Royal Commission
National Autism Strategy
National Disability Employment Strategy
National Disability Advocacy Framework
National Disability Data Asset

As an overarching recommendation beyond just the proposed NDIS Amendment Bill, we would welcome clarity on the intersectionality between all of the strategies and foundational supports, tested and articulated from the lens of a person with a disability and how it impact their lives.

Are we there yet?

The proposed NDIS Amendment Bill paves the way for a more connected ecosystem for people with disability and is only one piece of the puzzle. It presents a great opportunity to track this shared, integrated approach. Down Syndrome NSW recommends a longitudinal study into a cohort of diverse and representative people with disability from the commencement of the changes to measure impact and outcomes.

Advocacy Organisations: The (Super) Glue

No discussion on the ecosystem is complete without highlighting the critical yet underfunded role of advocacy – “the foundational support to make foundational supports work”, as quoted from the Disability Advocacy Network Australia (DANA) Priorities Project Report.

Advocacy provides significant support to people with disability both inside and outside the NDIS. Like glue, we fill the cracks, we stick by the side of our members and we join all the pieces together.

Increasing demand outweighs underfunded capacity

The Disability Advocacy Network Australia (DANA) recently released a Priorities Project that found that only one in two people with disability can access the advocacy support they need due to lack of funding that leaves organisations only being able to meet half the demand.

In our organisation, we face overwhelming and ever increasing demand for services,

supports, information and advice with minimal funding to match. More people on the NDIS means more people turning to us.

Quantifying the value of advocacy

Advocacy plays a key role in mainstream linkages, capacity building, self advocacy support, isues mitigation and cost savings. We strongly recommend that state based advocacy organisations are afforded equal opportunities to national organisations. We also recommend a research study into the value of advocacy, unmet need and service mapping.

Stuck in the middle with you

So too we have seen a significant increase in the number of Plan Managers and Support Coordinators contacting Down Syndrome NSW over the past twelve months seeking for us to effectively do their role, for free. Where Plan Managers and Support Coordinators work well, they are worth their weight in gold and provide a high value service to participants which in turns leads to greater outcomes. However, the tail is long in this space, with a number of sole traders and providers letting the great operators down through mere sector association. Whilst the minority, we are seeing an increase in funds being expended above the plan budget, leaving us to be unpaid and causing significant administrative costs to our lean organisation that we often cannot recuperate.

Peak body Disability Intermediaries Australia (DIA) in their Media Release this March stated that the majority are exceptional quality providers and that, “Since 2019 DIA has been raising concerns to the NDIA and NDIS Commission about the oversight, market monitoring and regulation of the sector and advocating for higher levels of accreditation and standards that put the participant at the heart of the services being delivered”.

Also of note from DIA: “62% of all NDIS Participants have proactively chosen to use a Plan Manager because it gives them the greatest empowerment to exercise choice and control over their plans, budgets and providers. The popularity of Plan Management reflects the positive difference “good Plan Managers” to overcome the complexity, bureaucracy, and compliance requirements of the NDIS so participants can get on living their lives.”

Individual Linkages and Capacity (ILC) Funding

Down Syndrome NSW receives no funding to support national advocacy and policy, nor to partake in the NDIS Review, Disability Royal Commission or other key national reform priorities. Despite our representations to government showcasing our significant work and impact in this space as the trusted voice for people with Down syndrome in NSW, the

national funding ecosystem needs urgent review. The ILC funding program intended for tier two supports has been haphazard at best since inception, with gaps in funding of up to 6 months for some projects, a lack of overarching strategy and is disjointed. The net result is that we do not have any current basis for quality foundational supports. State based organisations play a key role – we would argue the biggest role – in connecting their members with national reforms that affect their lives, as we are their trusted representatives. Down Syndrome NSW seeks to be actively involved in the codesign of a range of rules outlined in the proposed NDIS Amendment Bill, with funding provided from the recently announced codesign allocation of funds.

Quality and Safety

Down Syndrome NSW strongly supports the amendments in relation to protection from exploitation, fraud and overcharging in the proposed NDIS Amendment Bill as outlined in schedule two. We also support the changes to improve the quality of auditing, as well as compliance and enforcement action where participants are at risk.

NDIS Review

The NDIS aims to improve the wellbeing of Australians by investing and empowering people with disability and supporting them to achieve their goals and participate in the community and economy. Taking a lifetime approach to achieving these outcomes, the NDIS invests in people with a disability early to improve outcomes later in life and improve system sustainability.

Down Syndrome NSW feels that for the most part, the proposed NDIS Amendment Bill translates the recommendations of the NDIS Review in line with its intention to put people with disability back at the centre of the NDIS, restoring trust, confidence and pride in the NDIS amongst them and their families and carers as well as the broader Australian community, while ensuring the sustainability of the scheme so that future generations receive the benefit of the NDIS.

Recommendations

Down Syndrome NSW commends the work of the NDIS Review culminating in the proposed amendments to the NDIS Bill.

We are honoured to represent the voices of people with Down syndrome and intellectual disability and their families.

Down Syndrome NSW looks forward to working with the Australian Government and NDIA.

What We Support

Greater flexibility in use of funds
Codesign commitment
Greater clarity of allowable purchases, upholding choice and control
Removal of primary and secondary diagnosis towards whole of person, support needs focus
Dedicated early intervention pathway, focus and improvements

A more robust, equitable and transparent assessment, planning and budgeting process

Navigators as trusted partners
Transitional arrangements
Increased protection from fraud, overcharging and exploitation

Improving the quality of auditing

Greater compliance and enforcement where participants are at risk

Alignment with the recommendations of the NDIS Review

Sustainability of the NDIS for decades to come

What We Seek

Specific measures in place to ensure and support codesign for people with Down syndrome and intellectual disability

Engagement of Down Syndrome NSW to develop easy to understand resources

Articulation of merit based appeals continuing in legislation, including needs assessments

Engagement of Down Syndrome NSW across all codesign opportunities

####### Enhancement of the UNCRPD framework in the legislation

######## Improved knowledge of Down syndrome within the NDIA and assessors, delivered by Down Syndrome NSW and self advocates

######### Clearer articulation of synergies across all disability reforms, strategies and frameworks from a person focused lens

A codesigned, strengths based needs assessment tool based on international best practice and allows for changes over time

Removal of APTOS as the interim measure as it is not fit for purpose nor appropriate

Draft assessments and budgets provided to participants in accessible formats, with open dialogue

A consistent and proactive approach to foundational supports codesign across all jurisdictions

Longitudinal study of people with disability, including NDIS, foundational and other

Research into the value of advocacy, matched with funding to meet demand

Recognition of the important role of state based organisations and deeper engagement on codesign working groups

Codesigned review and reform of ILC funding and other national funding to ensure true representative engagement and diversity

About Down Syndrome

Down syndrome is a genetic condition, sometimes referred to as Trisomy 21. It is the most common genetic disability. There are approximately 13,000 people in Australia with Down syndrome. The birth rate in Australia for Down syndrome is one in every 1,100 births. Evidence tells us that 9 out of 10 pregnancies in Australia are terminated if Down syndrome is detected.

Most people have 23 pairs of chromosomes, making 46 in total. People with Down syndrome have 47 chromosomes in their cells, having an extra of chromosome 21.

People with Down syndrome have:

Areas of strengths and other areas where they need support;
Some level of intellectual disability;
Some characteristic physical features;
Increased risk of some health conditions;
Some developmental delays and learning difficulties.

Down syndrome is a genetic condition; it is not an illness or a disease. It is nobody’s fault. There is no cure and it does not go away.

In the 1950’s (not that long ago), the life expectancy for people with Down syndrome was as low as 15 years of age. In recent times, progress in medical and social sciences has improved the quality of life enjoyed by people with Down syndrome. In Australia today, the life expectancy or Down syndrome averages 60 years of age.

Whilst this is a milestone to be celebrated, it also presents us with the first generation of people with Down syndrome who will, in the main, outlive their parents. This creates an even greater need for representative associations like Down Syndrome NSW to provide critical services, supports and advocacy at all stages across the lifespan.

With the right supports, people with Down syndrome are able to live full and active lives in their communities. From education, to employment, to community participation, to relationships and housing options, people with Down syndrome enjoy the same needs and aspirations just like everyone else. However, achieving these goals can be harder for people with Down syndrome, with some level of support needed to help them achieve the kind of life that most people take for granted.

Down Syndrome NSW proudly works with passion to support all people with Down syndrome to live inclusive, valued and active lives.

Our Important Work: Down Syndrome NSW

Our NDIS Engagement: Down Syndrome NSW

WATCH SPEECH (10 MINUTES): Emily Caski & Ellen Hester Annual NDIS Conference DSC 2023 - Down Syndrome NSW (youtube.com)

Easy to Understand Guide to the NDIS Review

NDIS CEO Commentary

About the NDIS: Down Syndrome NSW Fact Sheet

NDIS Checklist: Down Syndrome NSW

Our Impact: Down Syndrome NSW Impact Report

Contact

Emily Caskal Chief Executive Officer 02 9841 4444