Policy work – Advocacy for Inclusion

Accessible summeries: What we heard: highlights from the 2024 I-Day Panel – Tuesday 3 December 2024

For the UN International Day of People with Disability (I-Day) Advocacy for Inclusion in conjunction with our delivery partners hosted a panel discussion shaped around the theme for I-Day 2024 on leadership as well as the four ACT community themes on voice, power, identity and self-direction.

The panel was chaired by well known ABC TV and radio host Ellen Fanning and included

Dr Rhonda Galbally AC, former Disability Royal Commissioner

Sean Fitzgerald, Founder of Consumers in Control and pioneer of self-directed funding in the ACT

Renée Heaton, Chair of the Disability Reference Group

Angela Braido, ACT Down Syndrome and Intellectual Disability Reference Group Member

Kat Reed, Chief Executive Officer, Women with Disabilities ACT

Craig Wallace, Head of Policy, Advocacy for Inclusion

The panel followed themes of voice, power, identity and self-direction.

What follows are edited highlights from the discussion under each of the themes.

Read and enjoy!

Leadership

The 2024 theme for I-Day proclaimed by the UN is “amplifying the leadership of persons with disabilities for an inclusive and sustainable future”

Q: Why did the disability community here in the ACT lobby so hard to get I-Day into community hands? Why now in the midst of changes like the NDIS reforms?

Craig Wallace

We chose to focus on this because it’s when we are in difficult times that we need to be seen and present in a range of spaces including cultural spaces.

Every successful political movement that is thought to liberate people gets there by becoming seen in the culture.

One of the best proponents of this was Stella Young who passed away 10 years ago today. A serious writer and thinker and knew how to turn the switch.

What Stella knew instinctively was that cultural dominance was important, but

it won’t last if you don’t take care of it. Other people can move in and steal it.

There is kind of a thing we need to own it, not just have people talking about us, but need to be controlling the narrative.

Secondly, I just always felt, frankly a bit outraged and angry that the one day of the year that was meant to be the disability day was controlled by somebody else.

So aside from the practical and pragmatic reasons for doing this, I felt offended we were not running our own day.

If you want to change something, grab a hold of it and do it yourself, I think, that kind of led us here.

Kat Reed

I think “Nothing About Us, Without Us” has been such a strong chant for the

community for a very long time.

Pride itself, and disability pride has been a discussion and part of that, and it has been so central to our movement. It is still an ongoing discussion.

How we celebrate Pride, what pride means, what terms we use, what is more important it is something that we’re defining for ourselves.

This is something that our community is, working through and discussing

it with each other. And able put together what it looks like and how we want others to see our pride and it’s such a core part of the move.

Because for so long disability is something that is seen as unfavourable or derogatory. I think especially now at a time where there is a lot of stressful news happening in the disability space.

That has been happening for the last couple of years. We have the Disability Royal Commission, the NDIS review.

It is a hard time, I think, to be a member of the community. But is also a very joyful time as well.

We don’t get very many opportunities to talk about the joyful stuff. So I think what’s really important we’re now in control of that. We get to say what it is.

We get to say how we talk about disability, how we talk about our pride and make this a joyful day for us without having it kind of done for us as well.

That’s why I think it is really important.

Shannon Kolak

I have spoken with lots of people from our community and spoken to lots of people that I work with. People want events that include and really embrace people with all types of disability including intellectual disability.

Many events that we have seen in the past our members told us when they have people with intellectual disability they seem to be for kids or for very young people.

There are plenty of adults with intellectual disability that want to be able to engage with the rest of the community. We need make sure that happens.

Often in events, they are making assumptions that people with intellectual disabilities, especially complex intellectual disability can’t engage or can’t actually participate alongside everyone else. That’s just not true.

I think in community hands, with true codesign, people with intellectual disability can help create events that will be inclusive everybody and where people with intellectual disability of all ages can participate alongside the rest of the community.

This has given us an excellent opportunity to create true inclusion around I-Day in Canberra rather than events that really not everyone can participate in.

So we’re really excited.

Voice

Q: We have learnt that voice doesn’t mean having power in the social media age when everyone is shouting.

What would it take for people with disability to have real power in Australia and what have we learnt from the Royal Commission about the battle to retain influence?

Rhonda Galbally answers

I would like to start by acknowledging the importance of international Day in the ACT

The ACT is the first state or territory to hand over full control to Advocacy for Inclusion for people with disability to design and deliver the content of this international Day.

This approach to International Day in the ACT is a first step in answering the question about power and influence for people with disability in the ACT.

To me power for people with disability in Australia relates to:

Speaking with one voice: this needs every DPO and DRO in the ACT (or in Australia for national impact) to drill down and identify the issues that are non-negotiable – that are absolutely core to achieving human rights for people with disability.

This requires putting aside differences, competitiveness

So that a spokesperson (or a small team) can be nominated as the most effective representative/s – allowing them to proceed with the mandate of all Disabled People’s Organisations

A coalition of DPOs could be formalised with agreed spokesperson

Establish a longer-term strategy to educate, advocate, negotiate and to recognise that change towards disability rights will need perseverance and determination (never to give up)

Briefings, briefings, briefings: rolling program of one on one and groups of MPs, bureaucrats, educators, service providers, journalists – one disability rights topic after the other

Using every method possible for briefings, including podcasting and where effective social media

Keeping going and celebrating small achievements

Self-direction

Q: Today has been about taking back control and self-direction. This is about much more than how we manage I-Day.

Will technology give people more control of their lives or should we be worried? Why is getting control and self-direction just as important as getting the right quantity of services?

Sean Fitzgerald answers:

On the question of technology

Without technology, my ability to communicate and to participate in the world would be severely limited.

I have a background in electronics engineering and computing, that’s where my technology experience brought me into assistive technology which allowed me to get involved with a bunch of people with different disabilities to make sure that they could access the world of computers, telephones, and communicate and participate in the world.

It’s tremendously empowering to watch people develop skills in computing, on phones, and feel as though they are equal to everybody else as well.

And as you do that, they also develop confidence and want to participate in events like this.

The NDIS is supposed to have picked up on all of that. It has done to a greater or lesser extent, depending on the quality of your advisors, occupational therapists and planners.

So there’s all sorts of gatekeepers now we didn’t have in the past, certainly

the programs that I ran, that limit people’s ability to participate. To be, to gain control of their own lives.

And that’s a worrying part of the NDIS for me. I think with I-Day, one of the things that we do need to do is making sure that people have a voice and are confident and can go out on a grassroots basis into society, not just on I-Day day, every day of the year, where they can engage with people, engage with society.

And someone asks you something silly, but no question is silly, you are educating people along the way. There is a great sort of position that organisations like Advocacy for Inclusion can have where we educate folks with a disability to do that in an effective way and not be offended and help break down barriers.

On the question of self-direction

There’s a theme that has been running for a long time in the disability community “Nothing About Us, Without Us” so that’s definitely part of it.

When I think of the NADIA project, we had 500 people with a disability input to that. The disability community felt they owned the program.

The NDIS spent a lot of money on it and we were breaking ground that all of the major IT folks, Microsoft, IBM, around the world were saying you have changed competing with the way you do things.

And sure enough, that’s what we did. People with a disability did, because we were directing the direction this thing was taking and what we did has spawned a half of a trillion dollar a year industry.

That’s the chatbot industry. Everybody’s got one.

People with a disability should understand they did that. That’s an empowering thing in itself.

Voice

Q: Beyond I-Day what needs to happen to build disability voice across the whole civil society including in disability organisations?

Renee Heaton answers:

Listen – we are still in a place where not enough people listen to people with disability. There is a fair few of us out there and we’ve made our own spaces and platforms – there’s literally thousands of opportunities out there for people to connect with a person with disability.

Learn – if you care enough to listen then you have to take it as an opportunity to learn. This means you have to unlearn some of the things you thought you knew and recognise there are things you don’t know.

Build – we have to build the platforms and opportunities for disability voice together.

In your own organisation

it is important that there is good leadership – expectation setting

disability competence and confidence has to be part of the culture and must permeate the entire organization

valuing difference and diversity as the only way we get to better – if we do same and promote sameness we will only ever do what we’ve been doing and that’s not competitive edge. Continuous improvement is necessary for all organisations and businesses to stay relevant in this world.

Q: How can people with intellectual disability be heard and achieve this voice?

Angela Braido

I have been to previous I-Day celebrations and they have seemed to focus on physical disability or on younger people with a disability. The last event I went to was full of kids from the special schools and it was advertised as an all-ages event.

I didn’t see anyone there my age or older at this event. And it left me feeling like this wasn’t for me. I have wanted to see an event with a focus on all disabilities.

I would like to see myself represented in the activities and celebrations. When you have an intellectual disability, that cannot be seen physically, sometimes it feels like you are misunderstood within the community.

I would like to ensure that my voice and other people like me can be heard through some type of I-Day celebration or event alongside people with other intellectual disabilities such as Down Syndrome.

We are all individuals with different abilities. Two people with the same disability, such as an intellectual disability, could have completely different needs and interests. It is important that we recognise this throughout I-Day celebrations and host events that reflect the true community in Canberra.

Not just people with a physically recognisable disability.

How can we ensure people listen?

Make sure that the I-Day events are hosted and organised by people with

disability, including people with intellectual disability. And remember “Nothing About Us, Without Us.”

Teaching the community about people with intellectual disability, communicate in different ways and that’s okay. Not everyone communicates like I do. And there is no need to be scared of people who communicate very differently.

The sunflower lanyards can be an excellent tool for people with disability to help other members of the community to know that they may need some extra support and patience. We can teach the community about what the sunflower lanyard means and this could help the voice of people with intellectual disability be heard.

If someone sees the lanyard, maybe they might take some extra time and care to actually listen.

The lanyard helps to recognise that somebody might have a hidden disability and it shows that they may need some extra support.

The sunflower lanyard would help us to know one another and understand one another.

Identity

Q: How have our ideas about disability identity changed in your lifetime? Is the future about pride, acceptance, diversity or something else?

Rhonda

Pride in identity:

Has changed dramatically for me over 76 years

From denial of disability to rage about treatment of people with disability to perhaps the beginning of pride laced with ambivalence

Because the truth is that people with disability do not have human rights and are not treated fairly, equitably, or even with respect and civility

So the present and future of pride has to be based on human rights

The Convention on the Rights of People with Disability has to be taken seriously in Australia for authentic pride to be possible

This will require coordinated action from all Disabled People’s Organisations as I have spoken about

And at the centre should be people with disability living, working and being educated in segregated settings, being abused, deprived and neglected.

They have to become the focus of our advocacy work for us to be able to be proud of disability identities.

Kat

I first of started becoming aware of disability politics and aware that I might feel more comfortable identifying with that back in uni.

My experience of disability is that I definitely have an invisible disability. I was diagnosed as being neurodivergent a bit later on, which is a common experience for femme women with disabilities as women.

There was a lot of helpful use in using the word disability and describing the things I struggled with through that lens and thinking about it in that lens. Culturally I felt very welcomed.

However, in upholding the Convention on the Rights of people with Disability is far behind. That combination of feeling like the culture and the community is very accepting and we’re moving to reclamation language and talking about pride, yet we still have so many things to fight for.

Craig

In terms of identity I’m feeling the need to reflect on what has happened in America and through other kinds of social movements where progressives have not managed to respond to populist themes and where ‘minority’ issues are being sidelined as part of ‘woke’ culture.

My reflection would be that we do need to try to speak to people where they are including people who might not identify themselves with intersectional movements.

But they might say, actually, for me, I’m just hurting. I’m in deep deprivation. I’m in the outer western suburbs of Sydney, with no accessible infrastructure or in financial deprivation. The Disability Support Pension and jobseeker are not enough for me to live on. I need our community to start speaking with some of those issues that really matter to people, in language I can relate to. These people also have a voice.

So it is going to be a real balance. Not everybody will identify as having pride and being a disabled person. But other people do. It is an opportunity to forge forward but never forget the people who are just hurting and just want stuff fixed.

Via email: foundationalsupports@thesocialdeck.com

Foundational Supports: Consultation

Thank you for the opportunity to provide input on the design of the new system of Foundational Supports. With NDIS changes now in effect and their full scope becoming clearer by the day, it is vital that Foundational Supports are developed in the right way, from the beginning.

With this joint submission, we focus on the role of the States and Territories, specifically the Australian Capital Territory (ACT), in the design and delivery of the new system of Foundational Supports. We identify four key components critical to the success of the new system: Design and Transition, Advocacy, Information and Referral, and General Support Priorities and Gaps. Each of these components is discussed in turn.

About us

Advocacy for Inclusion (AFI) is an independent organisation delivering reputable national systemic advocacy informed by our experience in individual advocacy and community and government consultation. We provide dedicated individual and self-advocacy services, training, information and resources in the ACT. As a Disabled People’s Organisation, the majority of our organisation, including our Board of Management, staff and members, are people with disabilities. AFI speaks with the authority of lived experience. It is strongly committed to advancing opportunities for the insights, experiences and opinions of people with disabilities to be heard and acknowledged.

Women with Disabilities ACT (WWDACT) is a systemic advocacy and peer support organisation dedicated to advancing the rights, safety, and inclusion of women, girls, and non-binary individuals with disabilities in the ACT region. Established in 1995, PWDACT’s work is underpinned by a human rights philosophy, aligning closely with the Convention on the Rights of Persons with Disabilities (CRPD) and the Convention on the Elimination of All Forms of Discrimination Against Women (CEDAW). WWDACT is unique in its intersectional approach to gender and disability advocacy, utilising co-design principles and the lived experiences of community members to influence policy and drive systemic change. We are proudly owned and operated by women* with disabilities, which gives us an authentic voice that resonates with the community we serve.

ACT Down Syndrome & Intellectual Disability (DSID) is committed to promoting and supporting inclusivity across the ACT and surrounding regions by ensuring the authentic voice of people with intellectual disability is heard and understood. We work actively within the community to assist in the removal of barriers for people with disability to access mainstream services and we aim to improve the quality of life for people with intellectual disability by providing support and information to their families, carers, schools, employers and other organisations.

Design and transition

Resources within the ACT government: The design of a new system of Foundational Supports presents an opportunity to reflect, take stock, and lay a solid foundation that works in concert with the National Disability Insurance Scheme. In recent years, and as surfaced through the 2019 Independent Review of the Australian Public Service led by David Thodey as well as subsequent reviews, program design and management have increasingly been carried out externally by labour contractors and consultants. It is essential that dedicated and adequate resourcing to the design of foundational supports is provided within Government. This involves significantly bolstering in-house policy capability for the State and Territory taskforces.

Our view is that ACT Government capability needs to be around double what it is now if we are to meet community expectations for adequate consultation and elements of co-design and the delivery of a new system within an adequate timeframe. The changes to the NDIS and the decisions by a number of agencies to leave disability provision due to sustainability issues mean that there is an urgent and immediate imperative to ramp up work on Foundational Supports. And to get it right.

Support for people with disability and trusted organisations: In addition to bolstering in-house policy capacities, adequate resources and funding also need to be available for people with disability, including the sector, to engage in the construction of Foundational Supports. This includes funding and support for disability directed organisations to audit, stock take, and surface to deliver Tier 1 supports for information, referral and advocacy. The NDIS has taught us much about the need for supports that are grounded and controlled in the local community rather than outsourced or provided by interstate providers with limited local capacity. This system requires State- and Territory-based engagement strategies. The design and provision of these supports cannot be left to large organisations operating outside of local jurisdictions, and it cannot be left to the Commonwealth.

Disability-controlled organisations provide a unique value proposition by promoting the rights, needs and interests of people with disabilities. These organisations amplify the voices and experiences of individuals with disabilities, ensuring they are heard in policy discussions, community planning, and societal debates. They play a crucial role in driving social change, ensuring that people with disabilities have equal opportunities and rights within society. This is achieved through community building and understanding the intersections between individual experiences and systemic challenges. It is vital that these organisations receive the support they need to help them identify and surface delivery capabilities as the new program is built.

Procurement principles: A critical step in the design of this new system will be establishing a set of procurement principles and themes. These should be, for example, locally focused, disability-controlled, accountable, bespoke, and person-centred. It is also important that any funding decisions consider compliance and adherence to the United Nations Convention on the Rights of Persons with Disabilities (UN CRPD). This would exclude, for example, the funding of segregated schooling and complex residential homes.

Implementation needs to accelerate as NDIS is cut: At present, and with recent changes to the NDIS, there is an acceleration of NDIS re-assessments and the removal of supports. The tension between the NDIS and a new system of Foundational Supports is a delicate balancing act which requires care and coordination. Slowing down or removing NDIS support without the necessary support safety net risks placing many individuals in a precarious situation. Unless the NDIS changes slow down this cannot occur without the acceleration of the design of foundational supports.

One approach to navigating this tension is to identify and provide early lifelines to service elements that are withdrawing from the NDIS or getting thin in the regions. Community transport in the ACT is offered as an example. Community transport is a unique and vital resource which allows people who experience transport disadvantage to have their travel needs met. However, changes to the pricing structure have rendered these services financially unsustainable. The few services that are still offered are at risk of closing down and some providers have left the market. Needs do not disappear when a service disappears and the ACT’s public transport system is not capable of meeting the individual needs of NDIS participants. In the recent National Disability Service pulse survey, 83 per cent of providers raised concerns about their ability to deliver services within the new price limits.

Design features: It is also important to differentiate between this new system and the NDIS. While the two systems need to work in concert, Foundational Supports should not replicate the NDIS but should also incorporate some of the better features of it. It is important that their distinctions are surfaced and made clear. We strongly advocate for the foundational support ecosystem to be built in a way that encourages the emergence of sustainable quality local- and community-managed providers. The new system can, for example, include block funding, but it is vital that the client interface reflects a person-centred approach and includes the ability to choose services.

Entry: It is also important that the new system does not include means testing or provide any additional barriers that make entry or access difficult. Instead, they must be bedrock, consistent, and entitlement based. In terms of access and usage, the new system must reduce complexity as well as requirements for complex online management and navigation. The new system cannot become weighed down by administrative burdens. Simplicity and ease of use must be core tenets in all design decisions.

Finally, we recommend simplifying the grants process as well as extending contracts to enable initiatives to build overtime. This will facilitate the consistency and continuity of effective programs and recognise that such effects take time to emerge.

Advocacy

Systemic advocacy and peak bodies play a crucial role in supporting the disability community as well as the government. Community sector organisations are under increasing pressure and strain with the load of disability reform work. Advocacy organisations are under genuine and sustained pressure in our individual and systemic advocacy work due to demography, NDIS changes, multiple reform approaches, expanded expectations, and the continued fallout from COVID. Under these conditions, it is difficult to meet Government and community expectations for continued engagement in reform work without appropriate resourcing.

While the new system of Foundational Supports should also incorporate an expanded role and resourcing for advocacy. The ACT, for example, has experienced an unprecedented demand for disability advocacy services. It is essential that funding for advocacy be appropriately separated and protected within the system with careful definitions in order to preserve independence. In terms of independence, advocacy cannot be provided by an organisation that also provides supports. These elements must be kept separate and distinct.

Information and referral

There is a strong need for locally designed and operated informational and referral services that are managed by people with disability and are continuously updated. This cannot be a set and forget static service or website. Instead, it needs to be an appropriately staffed dynamic service equipped with peer review capacities, disability control, and the ability to genuinely compare services by transparently rating and critiquing service offers. This requires a great deal of integration across places, spaces, and NDIS services. It needs to be continually updated to keep up with the rapid changes in the service landscape. It must be staffed by human operators with actual knowledge and intelligence about accessible spaces, places, venues and services. It is almost important that such services are accessible and can be reached and navigated by phone.

The service should be modelled on the specialist disability information services program which was defunded by the Commonwealth in 2015 but operated in the State and Territories and connected through a national network. It is important that this does not become an additional national website replete with limited or redundant information, government only services and dead links like the Disability Gateway. Investment in navigation needs to be accompanied by investment in information and actual service design so people have services to actually navigate between.

In summary, we are advocating for a state-based information referral service, that is not for profit, human resourced and staffed and not just web-based and is continually updated. Such a service needs to be an intensive service offering both information referral with local knowledge and case management services.

General support priorities and gaps

Foundational supports must add to the support ecosystem and address known gaps by genuinely reaching new groups of people for supports, not just those no longer on the NDIS. This includes, for example, mental health support for people with disability, including people with intellectual disability, as well as funding for case management and people requiring intensive wraparound services.

Recognising and incorporating supports focusing on broader capacity building is an essential component of the new system. At present, there is a significant gap in the existing CATS funding when it comes to assisting individuals with meal planning, grocery shopping, and meal preparation, for example. At present, there is also a lack of identified supports that assist people moving out of, and staying out of, segregated and closed settings and acute interactions. This includes hospitals, group homes, nursing homes, and the CYPS system. It is important that any support provided focuses on helping individuals build independent living skills rather than providing direct assistance.

Often, capacity building supports are linked to an employment outcome. There is a great need to focus on community development, recreation, skills, and social participation without an employment outcome, especially for isolated groups like older women. It is also important that capacity building supports are developed with a gendered lens addressing the systemic gaps to ensure women, girls and diverse people have access to the support they need.

Supports focusing on preventative healthcare, wellness and pain management for people with disability are also essential. Community-based preventative health services offer safe and affordable ways for people with disability and older people who use them to manage pain, weight, and wellness in ways that enable them to stay out of hospitals or even nursing homes.

Importantly, access to community-based services can also serve to alleviate social isolation and loneliness as the degree to which individuals are interconnected and embedded in communities has a powerful impact on their health and wellbeing.

It is also important to ensure the continuation of bespoke services that do not thrive in a market-based system. For example, organisation’s such as Technology for Ageing and Disability ACT (TAD ACT) which provides specialised custom assistive equipment that solves the specific problems faced by an individual.

Other issues:

There is currently a lack of means to get assessments to support NDIS access applications, especially for those on low incomes, JobSeeker, or Disability Support Pension. Previously, there was an avenue for those with complex needs through Complex Case Management funding through Communities at Work. The cessation of this support has put many people needing ongoing support at a further disadvantage in obtaining the evidence required for NDIS access approval.

Additional support gaps include support to maintain one’s home, to address hoarding issues, and assist with (government) paperwork. AFI often receives requests for assistance in these areas, yet there currently appear to be no appropriate services, within the existing system, to refer these clients to.

In closing

The design and implementation of the new system of Foundational Supports answers a pressing need and presents an enormous opportunity. It is vital that disability and community organisations are supported and included during this process, and it is essential that support gaps are appropriately surfaced and understood. The risk of insufficient investment and planning for foundational supports is that they fail to deliver, a risk which will have significant flow on effects across the board from community housing, family children’s services to legal aid. To get this right, the new system must move forward and learn from the mistakes of the NDIS if it is to create a true ecosystem of support so that the NDIS is not an ‘island in the desert’ as suggested by the NDIS review.

This is a joint submission but in the first instance you can discuss by contacting Craig Wallace, Head of Policy at Advocacy for Inclusion via craig@advocacyforinclusion.org.

Advocacy for Inclusion, ACT Down Syndrome and Intellectual Disability ACT and Women with Disabilities ACT – coming together as the ACT Disability Directed Advocacy Caucus have today announced we intend to withdraw from participation in the implementation of the ACT Governments Voluntary Assisted Dying reforms. We’ve taken this decision because the government has not responded to requests for urgent additional support for people with disability to engage on a complex and consequential reform with complex consultation requirements while there are also pressures in other areas. We’ve also noted that the scheme design has not acted on extensive feedback from the disability community over a two years of work and engagement including funding to address unintended consequences in the VAD debate such as hate speech, investments in social model training for practitioners, an emergency support pool for people with disabilities and dedicated suicide prevention work. In these circumstances we cannot be confident that further investment in work on VAD is a good use of our resources. As we withdraw we have asked government to be mindful and attend to issues raised repeatedly across the consultation period by disability groups.

Advocacy for Inclusion have made a submission to the Senate Standing Committees on Environment and Communications Inquiry into the Online Safety Amendment (Social Media Minimum Age) Bill 2024. This amendment seeks to limit access to young people to social media if they are under 16 years of age. In our submission we speak to the risks and consequences of social isolation for people with disabilities and some potential unintended consequences from a blanket ban. We point to the value of social media as an accessible and available tool for information sharing, connection and participation in education, youth development and creative activities. We point to risks presented by removing an accessible communication channel from people who have difficulty communication in other ways. We recommend the amendments do not proceed and we also point to the troubling timeframes to comment on the amendment with a one day timeframe provided to the inquiry. Our submission is endorsed by the Youth Coalition of the ACT.

Following the comments regarding the cost-benefit approach to valuing human lives in times of crises by Professor Peter Collignon AM during an ABC Radio Canberra on Wednesday 30 October 2024, Advocacy for Inclusion has approached both the Australian National University as well as Canberra Health Services to clarify whether such comments represent and reflect their positions, practices and values. AFI has noted their unique institutional positions and role in upholding and modelling the human rights values espoused in the ACT. We would appreciate any statements or actions these institutions are prepared to take in response to this incident.

On election eve, disability groups have united to ask voters and candidates to meet the promise of inclusion for the next generation of Canberra children and young people with disability.

Education is a path to hope, prosperity and future wellbeing so it is fitting we end our shared campaign advocacy with a call to improve educational outcomes for people with disability. Yet only 56% of people with disability complete year 12 compared to 77% without – a reality which sets to many people on a path to low incomes, low employment and poor life prospects.

Education is a human right and we need more than bad choices between segregated settings and poorly resourced, inadequate mainstreaming. There is no real ‘choice’ as there are few examples of well-resourced, universally designed education offerings in mainstream settings.

We want the next Assembly to:

Address teacher workload issues – through an additional administrative resource in each school – to ensure teachers are able to allocate focus and attention to inclusion

Increase the student funding loading for students with disability

Build universal design into all curricula and premises

Make critical access upgrades to ACT schools – establish a firm target for all of them complying with access standards

Commit to a goal of moving students out of segregated settings

We thank candidates, voters, members and the media for engaging with people with disability across the election campaign. We look forward to the new Assembly and will be working to keep the next administration informed and accountable.

You can find all more information about the promises from candidates, our election work and accessible voting in our election day wrap up here.

Media contacts: Use quotes below or contact Shannon Kolak, ACT Down Syndrome and Intellectual Disability on 0408646857 or secondary contact Craig Wallace on 0477 200 755

Quotes attributable to disability organisations

“One of the ways that truly inclusive education can be achieved is by addressing the challenges surrounding teacher workload. This would give teachers the time and resources to focus on creating more inclusive settings.”

“With increases in the number of students meeting the ACT Student Disability Criteria, it is also critical that this is matched with increases to the student funding loading model supporting students with disability. The student resource allocation model has been under review since 2022. We need transparency into both the funding rates and calculation methods.”

“Three of the Disability Royal Commissioners, and two with lived experience of disability, recommended phasing out and ending special/segregated education as it stands in stark contrast to the CRPD rights of inclusive education. We call upon the ACT Government to be a beacon of change by committing to the goal of moving students out of segregated settings.”

Shannon Kolak, ACT Down Syndrome & Intellectual Disability

“We would like to see the adoption of a universal design approach whereby systems, processes and services are designed with improved accessibility for all students, parents and carers, regardless of whether or not disability is identified. This will increase accessibility for people with misdiagnosed or unrecognised support needs and reduce the onus on people with disability to disclose their support needs.”

“Accessibility is an important topic when it comes to inclusive education. This includes flexible classroom spaces, quiet rooms and withdrawal spaces, outdoor courtyards and playgrounds. It is vital that critical access upgrades are made across our education settings – particularly regarding automatic doors, ramps, and accessible toilets. Firm targets need to be set to ensure these settings comply with access standards.”

Craig Wallace, Advocacy for Inclusion

Education Priorities

Problem statement

Access to quality education is universally recognised as a key pathway to the achievement of social, economic, political and human rights, especially for children. It is acknowledged around the world that access to education is intrinsically linked to key developmental indicators and milestones from child development to employment. Access to education is not only formative, it underpins other fundamental rights and has rippling impacts felt across all aspects of our lives.

The persistence of the binary education system of mainstream and special schooling has been justified by the argument of parental choice. However, the evidence from the Disability Royal Commission is that parents of children with disability do not have viable schooling options to choose from. Mainstream schools as they currently exist struggle to provide what parents want. But segregated schools do not offer an acceptable alternative, even if co-located with mainstream schools or with programs to occasionally share experiences with non-disabled peers. These are flawed responses for fixing complex problems and have had little success in the past.

The vision and ethical leadership required to move the ACT beyond an inequitable educational status quo continue to elude us. The decision to maintain both mainstream and special schooling options is inconsistent with research evidence on outcomes for students with disability and for their peers. From this, it is clear that genuine inclusion is superior over the short-, medium- and long-term. Maintaining a dual system dilutes the efforts for real change and creates a distraction from the critical work of making an authentic difference in the lives of students with disability.

We want to ensure that every child realises their fundamental right to an inclusive education under the CRDP. Article 24 of the CRPD recognises “the right of persons with disabilities to education. With a view to realizing this right without discrimination and on the basis of equal opportunity, States Parties shall ensure an inclusive education systems at all levels and life-long learning.”

Evidence

The evidence of poor education completion is seen in low attainment, low incomes, poorer life prospects and low employment:

People with disability are less likely to complete year 12: 56.1% compared to 77.3% of people with no reported disability

One-third (33%) of people with disability identify wages or salary as their main source of personal income. Compare this to more than two-thirds (71%) of people with no reported disability

The employment rate is 20% lower for people with a disability aged 15-64.

Nearly one-third (30.8%) of people with disability aged 15+ are in the lowest income quintiles. Compare this to 10.4% for people with no reported disability.

Key facts:

21.8 per cent of students in ACT schools were recorded as receiving adjustments because of disability in 2023

The number of students meeting ACT Student Disability Criteria increased by 23.8 per cent between 2018 and 2022

The benefits of inclusive education extent to students with and without disability

When students with diverse abilities learn together, they are exposed to varied perspectives and problem-solving approaches which enrich the learning experience for everyone

Inclusive education promotes the development of essential social skills, such as empathy, cooperation and communication.

There is no evidence that segregated settings produce better life outcomes for students with disability

A comprehensive review of all studies of inclusive education conducted by over a 40-year period compared education outcomes for students with disability in segregated versus regular education environments. No study indicated better outcomes in segregated settings (Cologon, 2019).

Conversely, segregated education leads to poorer academic, social, and emotional outcomes for students with disability. These negative effects include:

Employment: graduates are less likely to attain competitive and secure employment

Abuse and neglect: segregation heightens the risk of abuse for children with disability. Students in segregated settings also experience higher rates of bullying and victimisation than students in general education settings

Studies have found that parents of children with complex needs ‘settle for’ or feel ‘forced’ into specialist settings due to lack of capacity in mainstream schools.

Deloitte Access Economics found that in a survey of 713 parents, “almost 33% states their child had been refused enrolment or encouraged to go to another school because of their disability.”

Our asks

In the coming ACT election, we ask candidates to commit to working towards genuine inclusion of students with disability in mainstream classrooms and create better life chances and outcomes for students with disability.

Address teacher workload issues to ensure that teachers are able to allocate focus and attention to inclusion

Increase the student funding loading for students with disability

Build universal design into all curricula and premises

Make critical access upgrades to ACT schools – establish a firm target for all of them complying with access standards

Commit to a goal of moving students out of segregated settings

Election comment authorised by Shannon Kolak for ACT Down Syndrome and Intellectual Disability

Please check out our ACT Election Disability Voting Day Guide E News Special Edition here where you can compare policies, read the campaign journal and find polling information: https://mailchi.mp/advocacyforinclusion/e-news-special-edition-your-voting-day-guide-to-disability-and-the-2024-act-election

Election material authorised by Craig Wallace.

The ACT Election is scheduled for 19 October 2024 and Disabled Peoples and Representative Organisations offer these priorities for voters and candidates in the lead up to the poll. We are non-partisan organisations which represent people with a range of disabilities. Our work and priorities are informed by the UN Convention on the Rights of Persons with Disability.

In the next ACT Legislative Assembly, we call on the Government and members to work towards an inclusive and welcoming Canberra which delivers the promise of a Human Rights Jurisdiction for the 1 in 5 Canberrans with disability.

Elected representatives should prioritise addressing stigma, ableism and discrimination in the ACT that currently results in high rates of violence against people with disabilities, and discrimination against parents and children with disabilities threatening the right to raise a family and the right to access support to do so.

Quotes attributable to disability organisations

“Women with disabilities experience unique forms of gendered violence, and at a significantly higher rate. The ACT should be leading the charge in intersectional, ambitious violence prevention policy. We call on the ACT Government to commit to fully funding an intersectional Domestic, Family and Sexual Violence Strategy.”

“Everyone has the right to be a parent if they choose. However, parents and children with disabilities experience the impacts of ableism, stigma and discrimination. The government should commit to removing barriers for parents and children with disabilities to access the support, education and resources they need.”

“We need more supports for parents with disabilities. We need funding to support parents, disability violence training for workers in the Children and Young Person support system, and a navigator position within CYPS to support parents with disabilities.”

“Children with disabilities have the right to inclusive consent and sexual health education. An incoming government should fund and implement a policy package to ensure all children with disabilities have access to meaningful and affirmative sexual health and consent education.”

“The ACT Government agreed in principle to end legalisation of forced sterilisation practice in their response to the Disability Royal Commission. No person with disabilities should be sterilised without their consent – this is a breach of human rights. An incoming government should prioritise an inquiry and growing research into this area in the ACT and move towards ending these practices in all their forms.”

Kat Reed, Women with Disabilities ACT

“We must ensure that crisis service locations, including shelters and temporary housing, are accessible and appropriate for all people seeking help. People with disability often have specific needs including accessibility, specialised equipment, medication storage, and support from trained health care workers. It is critical that these needs are taken into account at crisis service locations.”

Craig Wallace, Advocacy for Inclusion

Media contact: Pippa Newman, Women with Disabilities ACT (Senior Policy Officer) on 0423740786 or secondary contact Craig Wallace (AFI Head of Policy) on 0477200755

Gender, anti-violence and families Priorities

Problem statement

People with disabilities have the right to live free from all forms of violence. They have the right to found a family, to decide on the number and spacing of their children, and to have access to appropriate education and resources to enable them to exercise these rights. However, ableism, stigma and discrimination against people with disabilities means that these rights are not upheld in the ACT.

The intersection of gendered and ableist drivers of violence leads to a higher rate of violence experienced by women* with disabilities in the ACT. They experience violence in unique ways and in different settings to people without disabilities, leading to barriers to accessing response services and limitations in current prevention strategies and policy.

Ableism, stigma and discrimination also impacts parents and children with disabilities, resulting in overrepresentation in the child protection system and barriers to accessing the support, education and resources they need.

Navigating different services including disability services, pensions, housing, NDIS, violence response services and informal parenting supports can be a challenge for people with disabilities in a complex and uncoordinated support system.

Significant investment is needed to work to prevent violence against people with disabilities, to protect the right to parent and support families, and to ensure that support services are connected, navigable and disability-informed.

Evidence

According to the ACT Disability Strategy’s Listening report, people with disability are between 2 and 10 times more likely to experience violence compared to people without disability.

The Disability Royal Commission Final Report found that women* with disability experience high rates of sexual assault, intimate partner, family and domestic violence, emotional abuse and stalking. The rates are higher than for men with disability or women* without disability.

A Disability Royal Commission research report found that from the age of 15, 46% of women with cognitive disability and 50% of women with psychological disability have experienced sexual violence, compared to 16% of women without disability.

Women* with disabilities have a unique experience of violence which can differ from a mainstream understanding of Domestic and Family Violence (DFV).

Current strategies and policies in development in the ACT use definitions of DFV that exclude carer violence; violence in group homes, colleges, dormitories or sharehouses; violence from partners they do not live with; and institutional violence. This can lead to gaps in services, and barriers to recognising the applicability of violence response services in the ACT for women with disabilities.

Organisations and sector workers may be unfamiliar with experiences of violence unique to women* with disabilities including withholding care, financial abuse, medical exploitation, denial of freedom of choice, chemical restraint, restraint or institutional violence. This can be a further barrier for women accessing the support they need.

In the ACT, there is limited temporary housing and crisis shelters that meet physical accessibility requirements, and much of the existing crisis housing is old and cannot be retrofitted to be accessible.

Women with disabilities need additional supports and considerations when accessing crisis response services and accessing the justice system, and organisations need assistance to ensure their services are accessible and inclusive. Although the Disability Justice Liaison Officer program is working well in some organisations, not all organisations have received funding for this position including key women’s sector organisations such as Women’s Legal Centre and Canberra Rape Crisis Centre.

The Disability Royal Commission Final Report found women and girls with disabilities in Australia are subjected to reproductive violence and abuse including menstrual suppression, forced termination, non-consensual contraception or sterilisation. In the ACT there exist legislative loopholes which could allow for forced surgical sterilisation of women and girls with disabilities to occur. Additionally, the ACT is missing an evidence base to know how frequently forced abortion and forced contraception happen within the territory.

Parents and children with disabilities are overrepresented in the child protection system and have poor access to services and to justice.

Parents with disabilities are overrepresented as subjects of child protection allegations, are significantly more likely to have children removed from their care, and face discrimination at every stage of their interactions with the system.

Children with disabilities are at greater risk of entering the child protection system and being removed from their families to be placed in out of home care.

Parents with disabilities who experience domestic and family violence are put at higher risk of having their children removed and being denied custody, due to disability discrimination and ableism within the child protection system.

Parents with intellectual disabilities have no options for formal supports in the ACT who can cater to their needs and support them as new parents.

Finding appropriate supports for parents with disabilities can be challenging, as disability supports (e.g. NDIS) are not designed to work for families. The community sector has little capacity to connect parents with disabilities to the supports they need.

Our asks

To end gender-based violence against women, girls and non-binary people with disabilities, we ask candidates commit to the following actions and investments to prevent violence, and to ensure responses are accessible and adequately address the unique challenges people with disability face when seeking support.

Funding for parenting supports, individual advocates and disability liaison;

disability violence training for Child and Young Person Support workers

A navigator position to support parents with disability.

The Integrated Service Response Program should be enhanced for all parents with disabilities who are in a crisis situation

A funding package for the delivery of an intersectional ACT Strategy for the Prevention of Violence against Women and Children

Funding for a Disability Justice Liaison Officer in all community organisations that work with women with disabilities experiencing violence, prioritising gender-specialist and gender-based violence community ogranisations that do not currently include these positions

Ensuring all children with disabilities have access to sexual health and consent education.

Development of an accessible reporting tool and investigation into more accessible reporting procedures so people with disabilities can report violence, abuse and neglect

Expanding accessible crisis service locations including increasing the number of physically accessible shelters and temporary housing

Election comment authorised by Kat Reed for Women with Disabilities ACT

The ACT Election is scheduled for 19 October 2024 and Disabled Peoples and Representative Organisations offer numerous housing policy priorities for voters and candidates in the lead up to the poll. We are non-partisan organisations which represent people with a range of disabilities. Our work and priorities are informed by the UN Convention on the Rights of Persons with Disability.

As we head into the final days of the election we note the release of the 2024 Anglicare Rental Affordability Snapshot which shows only 0.4% of housing is affordable to people with a disability.

Housing plays a major role in the health and wellbeing of people with disability by providing shelter, safety, and security. In the ACT, the limited supply of accessible housing that is affordable and appropriate does not meet Australia’s commitment to the UN CRPD and the right for people with disability to live with equality and choice. For places people with disability at a heightened risk of experiencing homelessness, housing insecurity, housing dissatisfaction, poor quality and/or inaccessible housing and housing unaffordability.

Quotes attributable to disability organisations

“The reliance on voluntary construction of accessible homes, post-construction modification, and provision of accessible social housing has failed to deliver accessible housing for most people with mobility restrictions. That is why the provision of more public and social housing at the Gold Level of accessible design is a critical issue.”

Kat Reed, Women with Disabilities ACT

“The recent Royal Commission shone a light on the pervasive abuse and neglect prevalent in group home settings. To realise the rights of people with disability, we are calling for the ACT Government to lead the way in phasing out and permanently shutting down these types of accommodations.”

Shannon Kolak, ACT Down Syndrome & Intellectual Disability

“As we head towards Saturday’s election, today’s release of the Housing Affordability Snapshot by Anglicare should once again focus attention on the desperate lack of any housing which is both affordable to people on lower income and build with accessible features which allow people to live in it. It found that only 0.4% of houses surveyed in the ACT and southern NSW region were affordable to people on the meagre Disability Support Pension.

“The lack of suitable housing is also highlighted by the troubling new Federal Aged Care Bill which gives explicit powers to place people under the age of 65 with disability into residential aged care – a situation which we know is incredibly isolating and inappropriate for these people.

“The reliance on voluntary construction of accessible homes, post-construction modification, and provision of accessible social housing has failed to deliver accessible housing for most people with mobility restrictions. Instead, incentives are needed to boost the supply of universal design private housing.”

“Problems with existing housing include poor access, unsuitable internal layouts, inadequately designed bathrooms, kitchens and laundries, and a lack of other qualities such as good light and connections to outdoor views and spaces. It is critical that social and public housing receives timely and appropriate upgrades and ongoing maintenance in order to be fit-for-purpose.”

“Stable and secure housing is also essential for mental well-being. For people with low income, housing instability is a constant reality and often it is difficult to know where to turn for help. To simplify the process, would also like to see the establishment of a housing advocate to help people navigate and access public, social, and private housing.”

Craig Wallace, Advocacy for Inclusion

Housing Priorities

Problem statement

People with disability want a place of their own, which is not dependent on Supported Disability Accommodation funding under the NDIS. Current housing is not designed to support disability or ageing in place, making it difficult and frustrating to live independently with choice and control over their lives. This lack of appropriate and diverse housing is an issue when people with disability want to remain and live independently in the community close to public transport, centre complexes and support services. In addition, most rental leases are short-term, which can add to the stress and anxiety of finding a safe, affordable, accessible and appropriate home.

Public and social housing persist as the main viable housing form for people with disability. There are long waiting lists for public housing (188 days for priority housing and over 5 years for a standard wait), a lack of social housing and unaffordable private rental housing. Group homes and cluster homes remain a feature of housing for people with disability in the ACT. Yet, this form of housing is inconsistent with the CRPD (Article 19) and erodes independent and capacity, limits choice, and heightens the risk of violence, abuse and homelessness.

People with disability face a double disadvantage in Canberra: a lack of affordable housing and a lack of appropriate built form. These issues are amplified by low rates of Disability Support Pension and JobSeeker, as well as Canberra’s high-cost private rental market.

Evidence

People with disability are at a higher risk of experiencing homelessness, housing insecurity, housing dissatisfaction, poor quality and/or inaccessible housing, and housing unaffordability
- Specifically, individuals with schooling or employment restrictions, psychological and intellectual disabilities, and mental illness are especially vulnerable to extreme levels of relative homelessness risk
In 2022-23, the ACT reported 10,795 public housing households. More than half (56 per cent) of households include someone with disability
A Disability Support Pension (DSP) recipient could not afford any of the 1,085 ACT rental properties advertised in March 2024
- A single person aged 21 years or older on DSP (and maximum supplements) receives $558.15 per week
- The median rental average for all dwellings in the ACT is $650
Between December 2018 and December 2023, Canberra experienced a 23 per cent increase in housing costs
The condition of public housing continues to decline with only 60 per cent of households with a disability living in houses of an acceptable standard (at least four working facilities and not more than two major structural problems).
Since 2021-22, there has been a 10 per cent decrease in net recurrent expenditure for public housing in the ACT
The number of clients with disability accessing specialist homelessness services has increased over the last four years
The ACT has the highest percentage of rental stress across Australia among Commonwealth Rent Assistance recipients, at 53.2 per cent
Renters in the ACT experience some of the coldest indoor temperatures, with an average of 15.3 degrees Celsius over winter. Substandard housing increases energy costs and increases the price renters have to pay in order to live comfortably.

Our asks

In the coming ACT election, we ask candidates to commit to ensuring people with disability can find and maintain access to appropriate and affordable housing in the community. To achieve this, we need:

Increased supply of public and social housing at the Gold level of accessible design that people with disability can immediately access
More non group social housing at the Gold Level
A package of incentives to increase private supply of universal design housing including tax breaks, planning preferences, getting mum and dad landlords to invest
Better identification of rental housing that is suitable for people with disability including requiring agents to advertise their accessible properties
Improved housing rental application processes that support applicants with disability
Provision of longer-term housing leaseholds, suitable for NDIS-funded home modifications package to incentivise accessibility in medium density housing
Urgent priority maintenance issues and upgrades – including installing air conditioning in the home of every public housing tenant with disability
Funding for a housing advocate to help people navigate and access public, social, and private housing
Work to encourage more accessibility features within medium density housing
Money and training to incentivise the inclusion of access ready dwellings within all new developments at two stories and above
A devolution program out of group housing in the ACT

Election comment authorised by Craig Wallace for Advocacy for Inclusion

A united front of ACT disability groups is flagging access to health care as a key priority for the 1 in 5 Canberra voters with a disability a day out from an ACT Disability Town Hall event kicking off tomorrow from 12 noon.

ACT Down Syndrome and Intellectual Disability, Women with Disabilities ACT, Mental Health Community Coalition ACT and Advocacy for Inclusion have come together to say access to critical acute, primary and preventative health care is a key priority as we approach the October voting period.

They point to data which reveals 1 in 4 people with disability find it difficult to access a GP while 1 in 3 find it challenging to access specialist health services. In addition, Bulk-billing rates in the ACT have long been declining but there have is further deteriorations with only 3.8 per cent of clinics bulk-billing all patients at the end of 2023.

With the ACT taking on new responsibilities for Foundational Supports following the NDIS review the groups call for prompt implementation of the ACT Disability Health Strategy and a focus on other services, programs and upgrades to improve access.

Health will be one of a number of priorities discussed at a virtual ACT Disability Town Hall election event which will include the voices of people with lived experience and be MC’d by ABC Canberra Radio mornings presenter Georgia Stynes.

The forum is expected to feature representatives from the major parties and groupings contesting the coming poll.

Quotes, facts and detailed health priorities can be found in the media pack.

Contact: Craig Wallace 0477200755

MEDIA PACK: Health, Disability and the ACT election

Quotes attributable to disability organisations

“We are calling for the full delivery of the ACT Disability Health Strategy which sees more than half of the funding going directly towards front-facing and on-the-ground delivery of our vital health services.”

“There is a pressing need for continued support for people with long COVID, and improved consideration and better responses to COVID safety. This is critical in health settings such as the University of Canberra Hospital as well as in primary care.”

“We are also advocating for accessible and affordable assistive reproductive technologies, such as IVF, that are available to people with disability.”

Kat Reed, Women with Disabilities ACT

“There is a strong need for affordable wraparound diagnostic services and clinics here in the ACT. These are particularly important for people managing ongoing diagnostic conditions, chronic illnesses, and for people who are neurodivergent.”

Shannon Kolak, ACT Down Syndrome & Intellectual Disability

“The ACT has an increasing focus on health access for people with disability and we need resources and capability to engage in this agenda. That includes an additional $175,000 to the Mental Health Community Coalition ACT to support one full-time equivalent position for research and policy analysis, as well as additional funding for MHCC ACT to contribute to a research initiative aimed at evaluating the effectiveness of the PACER program for individuals with co-occurring mental health conditions and disabilities.”

Melanie Wilde,Mental Health Community Coalition ACT

“There are a number of equipment and accessibility upgrades needed within our hospitals. For example, providing accessible and height adjustable beds and slide boards in emergency departments, modern commodes and shower chairs, fully compliant left- and right-hand transfer toilets, and communications boards in every ward. We also need attention to social work, case management and other supports, especially at the rehab hospital”

“Given the decline in Bulk Billing, we would also like to see free or low-cost extended consultations for people with disability, as well as more support for community-based gyms and hydrotherapy. These interventions provide critical health and social benefits for our community and we need to see a recommitment to them in the next Assembly. COVID also continues to be a concern in our community requiring focus and attention”

Craig Wallace, Advocacy for Inclusion

The facts

Problem statement

It is the right of people with disability to attain the highest standards of health, without discrimination on the basis of disability. People with disability have higher rates of use of health services including General Practitioners, medical specialists, and hospital emergency departments and services. People with disability are also more likely to face barriers to accessing health services.

The dominance of the medical model of disability is likely contributing to poorer health outcomes and health inequities for people with disability. Diagnostic overshadowing is also a problem. This is when a medical practitioner assumes that a patient’s complaint is related to their disability. This is a significant risk when medical practitioners do not have specific disability knowledge and training. It can lead to symptom dismissals, underdiagnoses, and misdiagnoses. This is a complex and emerging concern that requires work to develop training.

Evidence

Around 1 in 5 Canberrans has a disability while Canberra has an ageing population. The 2018 ABS Social and Community Services Survey found that 19.4% of those in the ACT had disability, up from 16.2% in 2015.
The Report on Government Services (2024) highlights the need for action and attention to health services for people with disability.
The ability of many Canberrans to access health services has been declining. People with disability reported poorer access to all types of health services on average compared to other ACT residents.
- This finding is reflected in the Disability Strategy’s Listening Report, with 63 per cent of survey respondents rated finding and using necessary health care services as a big or very big issue.
The ACT has the second lowest level of access to bulk-billing in any Australian jurisdiction. Average out-of-pocket costs at the 94.9% of clinics that do not bulk bill are 49.01 for a standard, 15-minute consultation.
Current settings and funding arrangements mean that medical professionals are under financial pressure to keep consultations short. This was a key recommendation from the ACTCOSS Imagining Better report: People with disability highlighted issues with short consultations in managing complex and chronic conditions and showed how bulk billing consultations exacerbated the risk of poor outcomes and diagnostic overshadowing.
The ACT continues as the worst performing jurisdiction in treating patients on time, in the various categories in the emergency department. In 2021-2022, less than half (48 per cent) of patients were treated on time.
The ACT also suffers from a shortage of specialists, especially specialist services for children with disability.

Our priorities for the next Assembly

In the coming ACT election, we ask candidates to commit to the following actions, decisions, and investments to ensure Canberra’s health system is accessible, equitable, and comprehensive. These priorities seek to enhance the health experience of people with disability, ensuring the system remains fit-for-purpose.

Full delivery of the ACT Disability Health Strategy with 60% of funding going towards front facing and on the ground delivery
Free/low cost extended consultations for people with disability
Priority hospital kit upgrades
- Accessible and height adjustable beds and slide boards in emergency departments
- Modern commodes and shower chairs
- Fully compliant left- and right-hand transfer toilets
- Communications boards in every ward
Affordable wraparound diagnostic services and clinics in the ACT. We seek these for people managing some ongoing diagnostic conditions and chronic illnesses and for people who are neurodivergent
Disability liaison officers at all Canberra Hospitals including the University of Canberra Rehabilitation hospital
Social work and Occupational Therapy positions for long stay patients at the University of Canberra Rehabilitation hospital
Commit to building a residential parent-baby mental health unit, ensuring accessibility for individuals with disabilities
Accessible and affordable reproductive technology to ensure these technologies are available to people with disability
More support for community-based gyms and hydrotherapy
Social model and diagnostic overshadowing training for all ACT Health staff
Continued support for people with long COVID and better responses to COVID safety especially in health settings such as the University of Canberra Hospital as well as primary care
Community health access grants to improve physical, sensory and digital access to primary care settings
A Voluntary Assisted Dying support package to anticipate and prevent unintended impacts of the new scheme, including:
- Emergency pool of diversionary disability supports for people considering VAD
- Suicide prevention work targeted towards people with disability
- Disability training for all Doctors and Nurses involved in VAD prescribing

Election comment authorised by Craig Wallace for Advocacy for Inclusion

Our Lives,Our Voices – shaping the future through voice, power, identity and self-direction.

Foundational Supports Consultation

Disability groups withdraw from the ACT governments Voluntary Assisted Dying Implementation:

AFI Submission on Online Safety Amendment (Social Media Minimum Age) Bill 2024

Letters following public comments by Professor Peter Collignon

MEDIA RELEASE: Disability groups exhort voters and candidates on inclusive education on eve of poll

Disability ACT Election Voting Day Guide:

Disability IS an election issue: Gender, anti-violence and families

Media Release: Disability IS an election issue: Housing

MEDIA RELEASE: Disability groups flag health priorities ahead of ACT election forum tomorrow

Acknowledgement of Country

Acknowledgement of our Elders