Nothing about us without us ALL: effective co-design with people with disability in all our diversity (COSP19 Side Event)

Good afternoon.
We might commence the discussion.
Thank you so much for joining us this afternoon.
It's lovely to see such a wide group of people coming forward.
I think will be a really interesting discussion with our panel this afternoon.
Welcome to the Australian side event, Nothing About Us Without us all, Effective codes with P with disability in all our diversity.
My name is Susanne Muir, and I am the Assistant Secretary of the Advocacy and Inclusion Programs branch in the Australian government, Department of Health, Disability and Aging.
The Australian government is committed to an inclusive and accessible Australia where people with disability can participate as equal members of society.
We are proud to partner with two of Australia's national Organizations for Persons with Disabilities or OPDs, people with Disability Australia and Women with Disability Australia to share our Australian experiences of code.
We are also thrilled to be joined by the International Disability Alliance and Global Disability Fund and the Pacific Disability Forum representatives to share perspectives on effective design, examples of co design and practice and ensuring that inclusive participation of all people with disability.
I'd like to thank our panelists in advance for today's discussion, and I'm very much looking forward to learning from everyone's experiences.
We're here this year at cost marking the 20 years of the state parties commitments under the Convention of Rights of Persons with Disabilities.
Australia's commitment to the CRPD over the last 20 years has been a significant shift in how the tiers of Australian governments, federal, state, territory, and local improve the lives of people with disability.
Domestically in Australia, all levels of government play a role in services and supports and infrastructure for people with disability.
The Australian federal government is addressing barriers to ensuring people with disability can exercise their rights and access systems and services to reach their full potential.
One example of co design that I would like to highlight today is the design of the aviation disability standards in Australia.
In response to concerns raised by people with disability and their advocates, the Australian government committed to co design new aviation specific disability standards with people with disability.
The commitment recognizes the importance of evidence based policy design and values the voices of people with disability as subject matter experts of their lived experience.
The standards will be part of a wider regulatory framework which seeks to improve transparency and accountability in the Australian aviation industry.
They will clarify the obligations of airlines, airports, and other aviation services providers to facilitate passenger journey for people with disability.
They will seek to remove discrimination in the delivery of commercial passenger aviation services.
The aviation disability standards are being co designed with people with disability with guidance from a steering committee and input from aviation industry regarding technical and implementation issues.
The steering committee has members from disability representative organizations, including the Australian Federation of Disability Organizations and PWDA as well as Justice and Equity Center and relevant government departments.
Barriers were identified by people with disability drawing on participants air travel experiences and workshop participants were identified on three principles.
Lived experience or interest in travel, people with disability who have experienced traveling, as well as those with limited access due to barriers.
Diverse representation, people from a wide range of disability types, cultural backgrounds, including First Nations peoples, gender identities, and age groups, as well as valuing the perspectives of families, carers, kin, and disability organizations, and geographic location, people from major cities, regional communities, and different state and territories.
CDISe process is occurring alongside the implementation of broader transport reforms, which will also improve the accessibility of air travel.
This includes the introduction of requirements for staff training, improvements to the provision of service information in accessible formats, and fair compensation when wheelchairs and other mobility devices are lost or damaged.
Four key themes emerged from the co design workshops that participants consider will support a significant improvement in providing accessible, dignified and respect and respectful air services.
These include people with disability in the design of any policy, process or infrastructure impacting air travel experience.
Be consistent so that people with disability know what services and requirements they can expect at each airport and from each airline every time they travel or visit an airport.
Staff training is critical for all staff, including contractors and passenger screening personnel.
Workshop participants agree that regular high quality training in disability awareness and consistent service delivery designed and delivered by people with disability should be mandatory.
Be transparent to ensure policies, procedures, and other information impacting a passenger's travel journey is readily available and provided in a range of accessible formats, including clear information regarding support available for people with disability requiring assistance, how people with disability can expect the service to be delivered, and who is responsible.
These four themes have influenced the options for standards which will be released in coming months for public consultation and then consideration by government.
This is one example of a very active process currently underway with the Australian government.
So I'd now like to introduce my panel members to share their experiences.
So Bobby Trav, LGBBQI plus Project Lead from People with Disability Australia.
Bobby will be providing an overview of how targeted code can help implement the CRPD more effectively and speak to overlapping systems and their impacts on people with disability and share examples of effective codes.
Thank you, Bobby.
Thank you, Cesar.
I've worked in domestic and family violence services and youth services with young people, with people experiencing homelessness, and gender equality and health policy, and with LGBTQ people with disability.
Despite these being very different sectors, I've noticed something remarkably consistent.
The people that are most affected by the decisions are often invited to conversations after all the important decisions have made.
When we do engage communities, we often engage them through systems that were never designed for them in the first place.
As Suzanne said, today, I'd like to talk about what co design looks like when we genuinely center LGBTIQ people with disability.
What happens when we don't and why partnership and building safer spaces are the most important ingredients for making co design work.
This isn't a usual part of the process, but if you're able to join along with me, I'd really appreciate it and anyone online.
I'd like to ask a quick question of you all.
How many people in this room have participated in a consultation process within the last year? If you can just indicate by putting your arm in the air if you're able.
Keep your hand up if you were involved in deciding what the consultation questions were themselves.
And keep your hand up if you were involved and had influence over the final recommendations.
Look around the room.
That's the difference between consultation and co design and a really quick way to show it.
Before I dive into sharing experiences or co design for LGBTQ people with disability, it's very worth briefly reflecting on where co design came from.
If we have any Scandinavian delegates in the room, they do a much better job than I'm about to do.
Co design emerged as a response to a simple but powerful problem.
Systems were being designed for people rather than with them.
Its roots can be traced back to participatory design movements in Scandinavia during the 1970s where workers challenged the idea that decisions about their workplaces should be made without their involvement.
Over time, these ideas expanded into health, social services, government policy, and community development.
But the underlying principle remained the same.
The people most affected by decisions should have influence over those decisions.
For people with disability, this principle is reflected in Article 4 of the Convention of the Rights of persons with disability, which requires governments to closely consult with and actively involve people with disability in decisions that affect their lives.
But over time, we've also learned something equally important.
Not all participation is equal.
Being consulted is not the same as sharing power.
When we talk about LGBTQ people with disability, the challenge is not simply whether people are invited into the room, but it's whether the room itself was designed for them in the first place.
So first of all, I'm going to set the scene again very briefly on this very dense area of work, but the lived experience reality for LGBTQ people with disability is that they are often navigating health systems that are not disability accessible.
They're navigating disability services and systems that are not LGBTQ inclusive, and they are engaging in community spaces that are not always safe and they're not always affirming.
I often say that LGBTIQ people with disability are forced to become experts in navigating systems because those systems are rarely designed to navigate us.
This can often have devastating consequences within the community, delayed or avoided care, reduced trust in services, and essentially increase isolation.
People have to choose between safety as a disabled person or as an LGBTQ person.
So what we're really looking at is intersectionality in practice.
Barriers are compounding and interrelated, not separate.
For example, it could be an avoidance of care due to this layer of discrimination.
It could mean that you could experience both physical inaccessibility and identity based inclusion.
So you can be excluded from both disability and LGBTIQ plus spaces, and those systems will remain siloed with individuals carrying the burden of navigating across them.
Really, intersectionality must be understood as systems failure at the intersections, not just identity.
There are gaps in current co design processes.
LGBTIQ people with disability are often treated as a subgroup rather than a priority cohort.
They can often be represented by a single voice.
As I am right now, speaking around all those diverse experiences and often they're invited into spaces where it's not safe for disclosure.
Co design processes, however, often, they can lack trust building and ongoing relationships.
They're often not trauma informed, and they can be limited and fairly inflexible with their participation methods.
Essentially, co design processes themselves can also unintentionally reproduce exclusion.
So I'll go on to something slightly more positive, which is around what effective co design looks like.
We're looking at co design versus consultation and especially in a law and policy reform context, including people with disability in consultations isn't co design.
People with disabilities should be included as the decision makers in the setting, the terms of the reference, the discussion papers, consultation plans, and in making decisions to the final recommendations.
This can be through and has a lot of success with lift experience advisory groups, for example.
And this target engagement has dedicated identity safer spaces.
It also means that there are lots of and many people in the room would have connection to this around community led approaches.
This is doing partnerships with LGBTIQ disability organizations.
Es in Australia are quite wide ranging from NDIS code advisory structures and a code advisory group, To LGBTQ specific programs, for example, our voices, our lives, our Way project, which was structured to ensure that members could engage according to their own strengths and requirements, and that trust and connection facilitated the learnings that the members were able to achieve and take away for use in their personal and professional lives.
It's often peer led facilitation and leadership and it works really well.
It also helps safety and trust.
There's no single right way to participate.
Some people prefer one on one conversations, other people prefer groups, others prefer anonymous written feedback.
Others may contribute via voice recordings or video submissions and accessibility shouldn't be an adjustment made later, that has to be built in from the beginning with clear consent and confidentiality processes, trauma informed design, choice of disclosure of your identity, and flexible participation with multiple engagement options.
Effective co design requires strong partnership ecosystems, not one off engagements.
Partnerships enable access to communities through those trusted relationships, safer, culturally competent engagement, shared leadership and accountability, and continuity beyond just single projects.
For example, at the moment, we are collaborating with a number of organizations.
Inclusive Rainbow Voices is one of them that is a community led insight shaping national work with shared advisory and co design structures working on together.
We've also been in partnership with the NIB Foundation who have resourced co design directly by leading to the development of LGBTQ and disability health care guidelines, the first in the world in fact.
This has meant that we can resource co design, we can enable that shift ourselves from consultation to testing, implementation, and training and essentially impact real world application and system impact.
That partnership is critical to making co design sustainable, scalable, and possible.
What do you need to know if you're going to go away today and think about one thing.
Co design has to be intentional and not a one size fits all approach.
Intersectionality has to be embedded from the very beginning and not added afterwards.
Those most marginalized must be centered in the decision making process and co design must lead to visible and tangible outcomes.
At the end of the day, partnership we've identified is essential for moving from participation to system change.
I'm going to close up now with a final statement around Designing with LGBTQ people with disability at the center leads to more inclusive systems, better outcomes across the whole population.
Effective co design is not even a human rights obligation, it's a practical and economic imperative.
Designing inclusively from the outset reduces long term efficiencies.
I want to leave you with a final thought.
When co design fails, we talk about wasted opportunities, but for many LGBTQ people with disabilities, the consequences are much greater than that.
Poorly designed healthcare systems means delayed healthcare.
It means people disengaging from services, increased isolation and poorer outcomes.
The good news is we already know what works.
We know that partnership works, we know that accessibility works, we know that lived experience leadership works.
The question is no longer whether we can afford to include co design.
The question is whether we can afford not to.
Far more expensive to fix exclusion than design from inclusion from the start.
Co design is not a cost, it's the smartest investment that you can make.
Thank you, Susan.
Thank you, Bobby.
I'd like to introduce Sophie Cushworth, the Chief Executive Officer for Women's with Disability Australia.
Sophie will be sharing insights on effective code for women, girls, and gender diverse people with disability, Adré barriers to and opportunities for effective design.
Over to you, Sophie.
Thank you, Suzanne.
We would like to build on what people with disability Australia has presented by focusing on what co design must look like for women, girls, and gender diverse people with disability.
As Bobby has put so well, co design at its core is about partnership and power in who defines the problem, who makes decisions, and who benefits from the outcome.
As Bobby mentioned, this is not just good practice, but a requirement under the CRPD.
Article 6 of the CRPD further recognizes that women and girls with disability experience multiple and intersecting forms of discrimination, and it requires targeted action to address this and to ensure our full development, advancement, and empowerment.
The CRPD committee has reinforced this in general comment number three, calling on states to ensure that women with disabilities through our representative organizations are actively involved in the design, implementation, and monitoring of all programs that affect our lives.
We are specifically named, not because women with disability are inherently vulnerable, but because systems are often designed in ways that exclude us and cause harm.
Every day our lives are shaped by systems that do not work together.
Disability services may not account for gender based violence.
Violence services may not account for disability.
Health systems may miss disability experiences which are more common for women and gender diverse people.
We are often asked to explain our lives in separate parts when we experience them as a whole.
Co design has to do more than invite us into the room or to the table to give feedback.
It has to change how a problem is understood, how decisions are made, and what gets built.
Code has become a common word.
But for women, girls, and gender diverse people with disability, the risk is that this word is used without changing who holds the power.
We are asked to give feedback on systems that have already defined the problem without us.
But at a basic level, the test is simple.
Did people shape the decision or just respond to it? Could they change the scope, method, budget, timeline, or final product? Was there a clear report back on what changed because people were involved? We also need to be clear about what makes co design possible.
It takes time, planning, and resources.
Accessibility and inclusion must be funded and built into time frames from the start.
Today we'll cover three areas, effective code for women, girls, and gender diverse people with disability, barriers and opportunities, and applied examples from our work.
The first practical step in effective co design is to start with power, safety, and access.
Effective co design starts early because if the problem is framed too narrowly, the solution will also be too narrow.
People need to be involved when you define the problem, choose the method, decide what evidence counts, and evaluate success.
For our community, this matters because we are often missed at the point where systems decide what the problem is.
Health systems may miss chronic illness, pain, fatigue, autism, ADHD, fluctuating disability presentations because diagnostic tools and service models were built around men and boys.
Violence systems may miss disability.
Disability systems may miss gendered violence, parenting, reproductive health, sexuality, poverty, and unpaid care.
Justice systems may ask people to tell their stories in ways that are unsafe, inaccessible, or impossible.
The first practical step is this design from the lives of the people most excluded rather than from who you might think is the average user.
Ask who currently gets missed.
A First Nations women with disability in the room, culturally and linguistically diverse women with disability, women with intellectual disability, girls and young people, are people in rural, remote, and institutional settings in the room? Are gender diverse people with disability in the room and named in the process rather than folded into broad language? And then ask what do they need to participate safely and meaningfully? Do they need easy read, interpreters, support people, childcare, one to one sessions or different formats, and design for access from the start rather than waiting for people to prove that they need it.
Effective co design also values lived experience, and that means paying people for preparation, participation, review, and follow up.
It means paying for access costs, and it means being clear about what decisions people can actually influence.
It also means having multiple ways to participate.
Some people will speak in groups, some will write, draw, or record audio, some will attend once, and others will engage over time or through organizations that they're already connected with and trust.
Good code gives people more than one way in.
For women and gender diverse people with disability, safety also needs practical design.
This can include trauma informed facilitation, access to counseling support, and referral pathways, especially if disclosures are made.
The role of co design is to create safer systems, better policy, and better services.
It should not extract stories and leave people carrying harm.
Support for decision making and participation is also critical.
Parents, carers, workers can support access, but they should not replace the voice of the person with disability.
The question is, what support enables this person to express their own view? The first takeaway is this, start early, put women, girls, and gender diverse people with disability in decision making roles from the beginning.
Fund access, pay people, build safety, offer different ways to participate, and then report what changed.
We also need to understand the barriers to effective co design.
The first barrier is unclear scope.
Women and gender diverse people with disability are often invited to share their experiences without being told whether that experience can change the decision.
Before you invite people in, be clear about what you're asking for them.
Are they advising, testing, co producing, making decisions? People need to know the level of influence they will have before they participate.
The second barrier is late involvement.
We see this play out when people are asked to engage on projects after key decisions are already made or when significant policy changes are developed quickly or in response to external pressures like budgets.
If engagement starts after key decisions are made, people are not shaping the outcome.
This leads to systems that miss the people they are meant to support.
This is especially harmful in areas like disability support, violence, health, parenting or sexuality because the original frame may already have missed gender disability realities.
At the intersection of gender and disability, this is something we see all too often that policy and programs designed to improve the lives of women don't think about disability and policy and programs designed to improve the lives of people with disability don't think about gender.
The third barrier is consultation fatigue.
Many people are repeatedly asked to share their stories without feedback, outcomes, or real change.
People need to know what they've contributed to and what has changed as a result.
The fourth barrier is inaccessible process.
Long documents, short time frames for engagement, technical language and unsafe or impractical conditions all exclude people, often those most affected by the issue and undermine commitments to co design.
The fifth barrier is administrative burden.
Many systems assume that people have stable housing, stable income, reliable Internet, high literacy, spare time, and confidence dealing with institutions.
Many women and gender diverse people with disability are also managing care work, domestic labor, trauma, poverty, health appointments, and fluctuating energy.
Complex systems, unpaid participation, and inflexible processes can create high barriers to entry and exclude our community.
The sixth barrier is power imbalance.
For women and gender diverse people with disability, this power imbalance can also include fear of being judged, disbelieved, pathologized, or treated as unsafe to parent or make decisions.
Professionals often control the agenda, language, evidence, and final decision of projects.
Funders may control timelines and deliverables, researchers often control methods and publication, and governments may control policy and budget options.
But effective co design requires actively shifting these dynamics.
This can include shared chairing, paid lived experience roles, steering committees, co authorship, partnership, community review, and evaluation led by co designers.
So the second takeaway is that co design needs time, it needs access, payment, trust, clear influence, and accountability.
I now want to move from principles to practice and share two examples from our work.
Importantly, these projects were funded by the Australian government to be led by our organization, and this is significant.
The CRPD committee has identified that a key barrier to implementation of the convention and the right to participation is often the underfunding of organs of persons with disabilities.
These projects recognize the critical role of partnership and resourcing that partnership and the leadership of organs of persons with disabilities.
The first example is Osit.
Our site is a website developed by and for women and girls with disability.
It was co designed with more than 100 women and girls with disability across Australia.
Osit is an example of intersectional practice because it starts from identifying a structural failure.
Gender equality resources often assume women are non disabled.
Disability resources often avoid topics like sexuality, relationships, reproductive rights, and violence.
Health, education, and violence prevention systems often treat disabled women and girls as passive recipients of care rather than people with rights, choices, boundaries, and expertise.
Osit responded to that failure.
It created a space where women and girls with disability could access information about their bodies, their rights, relationships, and safety from a starting point that recognized their autonomy.
Intersectional co design is not just about adding more groups to something that already exists.
It's about finding where existing systems are failing people and building from that point.
The second example is NEV.
NEV began as a project to expand our site with a focus on violence against women, girls, and gender diverse people with disability.
But early co design workshops showed the community had a preference for a whole new website, so the project changed.
This is a really practical example of power sharing, where the community had the power to change the scope and final product.
NEV engaged more than 200 women and gender diverse people with disability, family members, supporters, and sector professionals.
A paid steering committee of women and gender diverse people with disability guided the project from start to finish.
The project used multiple entry points.
In person and online workshops, surveys, steering committee meetings, expert co production panels who wrote and designed the website content, quality review, user testing, feedback loops, and story submissions.
This mattered because people participated in different ways.
Neve made accessibility a design priority.
It became Australia's first easy read first website.
Users arrive in easy read first with the option to move to plain English.
This was a design choice.
People who face the most barriers should not have to do the most work to access information.
NEV also includes text to speech, larger text options, and a calm space for users who need a break from sensitive content.
These features came from listening to participants and designing around access and safety.
NEV shows trauma informed code in practice.
The website covers topics like violence, abuse, sex, relationships, consent, money, online safety, confidence, and well being.
Widow made counseling available at workshops and began workshops with the safety and well being process.
Participants shaped the language used to discuss violence and abuse.
Their feedback also led Witter to broaden the website beyond crisis information to include pleasure, confidence building, and self love.
Participants told us that the website needed to feel welcoming and safe.
The home pages do not mention violence or abuse at all.
Our community didn't want the name of the website to mention violence.
They wanted a resource that would keep them safe and make them feel safe at the same time.
This shaped the tone of the content and the creation of the character named Nev, which means bright.
The website is written as though it is the character Neve talking and sharing her advice.
This is intersectional practice in action.
NEV did not ask women and gender diverse people with disability to separate their lives into different categories.
It recognized that violence, disability, gender, sexuality, and confidence often sit together.
The design had to respond to those realities together.
That is why NEV includes information about abuse, but also consent, pleasure, confidence, online safety, and self love.
The co design process changed not only what we said, but how we understood the problem and what we understood the problem to be.
The practical takeaway is that intersectional co design must change the frame that we're working with.
We need to avoid asking people to split their lives into categories.
Ask how the system needs to respond to their whole experience.
So I'd like to finish with one final point.
Code should change something that people can see, use, or feel, and that change is visible in eyesight and Nev.
Oyesight shows what becomes possible when women and girls with disability build a resource about their own bodies, relationships, rights, and safety.
NEV shows what becomes possible when code has power to change the project itself.
Both examples show what can be achieved when states provide funding, resources, and time for genuine co design.
And that is the standard we must take into the next phase of CRPD implementation.
Co design that changes decisions, shifts power, and leaves people with disability with something safer, more accessible, and more useful than what came before.
Thank you.
Thank you, Sophie.
Some really powerful principles, but also practice shared there.
Thank you.
I'd now like to invite Jose Maria Viera from the International Disability Alliance to share some examples of effective co design.
Thank you, Madam Chair.
Colleagues and friends, good afternoon.
First of all, I wish to acknowledge on behalf of the International Disability Alliance, what an important cost we are all having.
It's a cost that not only recognizes the 20th anniversary of the CRPD, but it's definitely a gathering that contributes in the understanding on the need of reflecting how we will move forward.
With regards to moving from policy to action and how we are going to use the CRPD, not as it has been used so far, which has definitely been very successful, but has been around the global instrument and how to influence policies and programs.
But actually, how we are going to transform the CRPD into a practical toolkit to advance disability inclusion at all levels, and in particular, how we are going to connect the global level discussions with the national level implementation.
I'm saying this because I do believe that we need to give the right context to this very important conversation.
I really want to acknowledge the organizers of this side event for actually not only reflecting on the achievement of the CRPD, but actually to reflect collectively on how to strengthen organization of persons with disabilities.
Those who 20 years ago or even more, we came together and realized that we needed not only to have a one collective view on how to advance human rights, but also on the need to influence the multilateral system to ensure that disability inclusion is not just an afterthought, but a human right instrument.
I've been asked to reflect a little bit on the importance of co design and the role of organization of persons with disabilities.
But before doing so, I really want to acknowledge the two great panelists that we had before because both of them have really addressed and describe the direct impact of successful and meaningful co design on the life of persons with disabilities.
That is all about what the CRPD is telling us, and that's all about what we have tried to achieve when we came together as a community and did fight for the Convention on the Right of Persons with Disabilities.
I do believe that between the CRPD as a global instrument and that fabulous impact that has been described by the two previous speakers on the life of person with disabilities, but co design is a reality and not a dream.
Between those two things, we basically need to put organization of persons with disabilities.
OPDs are the vehicle for transforming legal framework policies and programs into real change for persons with disabilities.
I would like to share with you some example, but also some reflections on how we need to strengthen the vehicle that obetes are if we want to really impact the life of person with disabilities.
First of all, we need to acknowledge and it has to be said that when we look at organization of persons with disabilities and the reality of both of them, I can shortly say that among our 5,500 members, OBDs in 182 countries, the reality remains really complicated.
Recent studies, for example, the one that we did for designing our new strategy in IDA, did show that most of the organization of Persons with Disabilities around the world do operate with budget below $5,000.
For example, when we look at the recent information coming from the dock marker from OECD of information of 2024, basically less than $0.10 per dollar go to organization of persons with disabilities, from investment, from the international comparation.
Let me repeat this figure because sometimes it's so small that people don't even think it's true.
Less than $0.10 per dollar actually do reach those vehicles that we are talking, OPDs that transform the life of person with disabilities or impact or improve the life of person with disabilities.
But trying to address not only the financial constraints that organizational persons with disabilities have, but also how we should perceive OBDs as vehicle for change.
Allow me to share a couple of concrete recommendations when it comes to ensuring that organizational person with disabilities can go, design, co create meaningfully and from a professional point of view.
Because the second reflection in this short assessment of where we are, but also where we want to be in the future, is to say that it's way more often to see organization of persons with disabilities acting as advocacy organizations rather than knowledge holder or solution builders for persons with disabilities.
It's way more often to continue experiencing situations in which organization of persons with disabilities are just tasked to participate in consultations, most of them not inclusive, not accessible.
To participate in the production of reports that usually end up in desk but not read and not used by policymakers or decision makers, or quite often, organization of Persons with Disabilities are either invited as trainees of multiple trainings or in the best case scenario to deliver basic and generic trainings.
However, the demand of persons with disabilities is significantly higher.
Clearly, we need to see how we're going to move from that approach of OPDs to be simply consulted for genetic consultations or trainings of knowledge production on report production to what we can define organization of persons with disabilities based on life experience of persons with disabilities, knowledge holders, but also the capacity to know how to do it properly.
I think we need to acknowledge that organization of persons with disabilities have accumulated after many years of working in different fields, the knowledge and the capacity to exchange among OBDs, to learn from each other, and to building on what persons with disabilities say and convey within the context of OBDs the solutions that best suit the needs of persons with disabilities.
But for sure, it's much easier to say what I'm saying here in this room than actually doing it out there in contexts where organization of persons with disabilities barely have the opportunity to fill the minimum gaps and needs of persons with disabilities.
The third reflection and perhaps the one that I would really like to leave everyone in this room with and to think about is what is missing in order to transform organization of persons with disabilities from being effective advocacy organizations to those who are leading the change.
First of all, we need to address the issue of power dynamics and the need for distribution or redistribution of power.
Power, we can, for sure, have a deeper analysis of what that means, but in practical terms, it means the capacity for OBDs to have the resources, the human infrastructure, the institutional frameworks to deliver on what they are tasked to do by those person that we represent.
Along the discussion around power dynamic is the importance of securing that organization of persons with disabilities do receive the necessary, flexible, core and direct funding to deliver on the different projects or activities that OBDs decide to deliver.
Third is the need for strengthening the spaces for organization of persons with disabilities to monitor properly and effectively programs and initiatives that are out there for persons with disabilities.
Last but not least, to always keep in mind and in a way to strengthening The organization of persons with disabilities have been mandated by those who we represent, persons with disabilities to bring their perspective together, to raise the voice of persons with disabilities, and to ensure that programs are designed in a way that persons with disabilities can have access to better opportunities.
In closing and bringing a very concrete example to this conversation, as the International Disability Alliance has started to implement its new strategy, we really want to share one initiative that we are delivering with a colaboration of DFT Australia, stronger movement, a stronger future, where beyond the delivery component of the program, I really want to share and highlight and acknowledge the process that we all went through in order to get to the right design of this program.
It was really interesting to see for the first time that Organization of Persons with Disabilities, we were not just invited when the program was designed.
It was really important to see that we had the space with the independent people, independent consultant working on the design of the program to have the safe space to share our needs and demand.
But perhaps the most interesting and innovative component in the co design effectively of the stronger movement and stronger future is that we were consulted on how to allocate resources and how to design the indicators and the framework to measure the impact of the program.
It's very often to see that when it comes to program design, especially in the field of international cooperation, we are either invited to submit project application to fight over limited resources or to simply follow the indicators that others set up.
On the other hand, when we are capable of raising our demands, but we are capable and allowed and enabled to participate in the design, including the indicators and the concrete delivery of the activities, including the resourcing of the program, we are in a way, strengthening organization of persons with disabilities and perhaps making the reality that OPDs in the context of the CRPD, are not just effective group of health advocates, but rather those organizations that creates, build, monitor, and implement solutions for all.
Persons with disabilities are now facing more challenges than before in the humanitarian agenda, in the climate action field, and in many others.
Organization of persons with disabilities should be equipped from the beginning and in the co design phase in order to raise our voice and be identified as reliable, fundable, and professional implementing partners.
The way in which we are going to transform the CRPD to be the toolkit that I was talking at the beginning, is when we realize the capacity of OPD as vehicle for change to receive the right space and the right resources, including political support to deliver our work.
I thank you.
Thank you, Hossain.
I think you've really thrown down the gauntlet there around how we can empower and strengthen the role of OPDs in decision making and co design.
I'd next like to invite doctor Ola Abdulab from the Global Disability Fund to share her reflections on effective co design.
Apologies for that.
It's the technology fails us sometimes.
Thank you so much for the invite for this very valuable discussion.
I would like to share with colleagues in the room today the journey of the UN Global Disability Fund in terms of engagement with organizations of persons with disabilities.
I would like actually to go a bit way back when the fund was created.
The UN Global Disability Fund was created a few years following the adoption of the Convention on the Rights of Persons with Disabilities.
Its mandate was clear since then, is to support countries through coordinated consolidated effort in terms of the implementation of the Convention on Rights of Persons with Disabilities.
The reflection that I wanted to make that the fund itself was designed guided by the principles of the convention.
The governance of the fund itself made sure that organizations of personal disabilities are seated alongside all the global partners for the governing of the fund, from the steering committee to the program committee to the committees that are sitting to evaluate programs and determine the prioritization that needs to be going to countries.
Even though the fund was from the beginning requiring implementing partners on the ground, which were until last year, mainly UN agencies to engage and partner with organizations of personal disabilities.
The reflections I wanted to share with you today on things that really worked very well and areas that we realized last year when we developed a new strategy that we needed to do more.
The fund was requiring since its establishment that organizations of persons with disabilities are required to be part of the co design of any program that's built at country level.
Meaning from understanding the context of the country, developing the situation analysis that usually forms the program design in any country and not just as sources of data, but actually being part of the data collectors, being part of the decisions of prioritization, what each country needs to do with the engagement through the fund, but being part of the implementation process of the programs themselves.
Last year, we did reflections with partners on the ground, celebrating the previous strategy and ending it with more understanding what needs to be done more.
What did we hear from partners on the ground and OBDs themselves at country level? Stories were shared with us in terms of the UN agencies at country level struggling at the beginning to understand who OBDs are.
Why do they need to be engaging with them? How to engage with organizations with disabilities, where to connect with them.
It was really interesting to hear the history of where the fund started to work with organizations of persons with disabilities.
However, we have seen along the years that there was massive progress, that almost all programs implemented by the UN GDF at country level are genuinely reporting from both sides, meaning implementing partners and OBDs that OBDs are brought alongside the whole program cycle.
However, when discussing with OBDs last year, we felt there is more that needs to be done and reflecting to what colleagues mentioned and specifically Jose in terms of, we need more in terms of commitments financially.
We needed to move in the fund from genuine co design and participation to co leadership and genuine partnership in the programs.
That's why I would like to share with you the model that we have created along the new strategy which we are committing to implement for the coming five years, which is really looking into, first of all, we have committed that 30% of any financial envelope that is going to any country is required and will be monitored very closely to go to organizations of persons with disabilities.
But we didn't only stop there.
We also said that we're following the twin track approach to inclusive development, where we're requiring the consortiums and the joint programs to genuinely partner and demonstrate by evidence partnership with organizations of persons with disabilities with explicit indication that at least 10% of that funding is allocated with explicit role for that partner organization.
We also said that we needed to engage with the broader movement in the country.
Transformation of policies and systems require a stronger movement engagement in complex processes like transformation of laws and policies and systems around complex areas like health, education, climate, and humanitarian response.
We created a parallel program that is open to local organizations of personal disabilities to be equally engaged alongside the process.
We are very excited about this process and we're hopeful that the learning from this initiative and approach will be shared to many other donors and funders around the world because we see it as an added value of genuinely translating the commitment of the convention to actual interpretation that goes beyond participation, that genuinely provides the spaces and the environment for organizations of personal disabilities to be seated around the table in complex policy discussions with genuine capabilities to make that change.
Thank you so much.
Any thanks, Ala.
Now I'd like to welcome Saito Aki from the Pacific Disability Forum to share her reflections on co design.
Thank you.
Good afternoon.
The Pacific Disability Forum, we are a big regional OPD in the Pacific and we have a membership of approximately 77 organizations.
46 of those organizations are organizations of persons with disabilities.
The Pacific is one of those regions which has remote islands and territories and sometimes it can be a big challenge reaching out to our OPDs in the Pacific and in other parts.
We have the European territories as well as the US influence.
Countries in the Pacific and they're all part of the Pacific Disability Forum.
When we're talking about co design, I will bring to you some experiences and what we do in the Pacific and how we work together with our partners and our government organizations to design programs on disability.
Firstly, we have reflections that the Pacific Disability Forum normally does in order to do co design.
Number one is the principle.
For us, the principle of nothing about us is very important to us because in many parts of the Pacific, when we're looking at the paradigm shift, the shift from the charity to medical to social and human rights, many parts, we're almost sitting at the charity model where there's a lot of power imbalance.
Therefore, the notion of nothing about us without us is very important.
We bring that to the table when we're having discussions.
Lately, we expanded that principle during the women deliver that was held in Melbourne two or so months ago and we said nothing about us without all of us.
But I guess in the Pacific, we like to come up with our own slogan, it's nothing without us.
In our last conference, our theme was nothing without us.
It's not only about disability, but everything because persons with disabilities, our issues cuts across all sectors and all segments of society and that must be addressed whether you're you're an engineer or an architect or you're a teacher or medical profession.
In all these other spaces, disability must be highlighted and must be recognized and must be ensured that disability components are met.
Secondly, the issue about rebalancing the power or rebalancing of power.
It's very important for us the notion of rebalancing of power.
When we talk about rebalancing of power, we're talking about effective co design which requires the movement of power, shifting it, not shifting it down vertically, but otherwise horizontally across to enable us to identify the problem, shape the process, make decisions, and also influence outcomes.
Distance programs into effective programs and also ensuring that partners we are building the capacity of partners along the way.
One of the examples I would give you is last year, I was invited to Jaunera in Solomon Islands where original convening of climate scientists, climatologists, the wind, the ocean people, they're all technical people, they are scientists.
I don't even know what they're talking about when I'm sitting there when I was sitting there.
While they're talking, I'm Googling the terms that they're using.
I'm Googling.
I was trying to identify a place where we meet our thinking you know, are met.
Interestingly, within the whole one week, they gave me only 30 minutes to make a disability presentation.
Talking to technical people, meteorologists, scientists and so forth, I stood there and I asked a question.
There was about 60 participants in a room around six tables, around the table, and I asked them, one table, give a question each.
I will not give you a presentation, but what don't you understand about disability and what do you want to know about disability? The conversation started.
Based on your everyday work, what do you understand about disability or what don't you understand? Interestingly, when we are talking about shifting the power and rebalancing of power, coming out of that, the excitement around these meteorologists and scientists, we started off conversations on how we would design programs on inclusive early warning system.
With that, PDF engaged our organizations in Fiji to run the pilot program.
So they came in and started conversing, partnering, sharing the resources with organizations of persons with disabilities in Fiji, together with the Fiji meteorological Services.
They've done the first phase.
So the resources were shared, the capacity was shared, the knowledge was shared.
They've conducted original trainings where we had our people going in, providing training, and also they were providing us with feedback.
So this is sort of the rebalancing the power.
We're not only talking about resources funding and all, it's the capacity, the knowledge where it is shared across.
Currently, now they're working towards shaping the second phase of the program, and we hope that when we complete the program, that this program will be able to be replicated across other countries in the Pacific.
Another area that we looked at the third reflections that we have or that we used is valuing the experiences as expertise, the experience of persons with disabilities.
And I will give you examples of excess audit.
In most countries in the Pacific, we have excess audit teams and they go around and do excess audit in buildings when, you know, building owners want their public buildings to be audited.
We go around the excess audit team, the Pacific Disability Forum, together with our OPD, we developed a toolkit to use this toolkit when conducting excess audit.
And with this team, these are not engineers.
You know, in the Pacific, we've just had two Two qualified engineers.
One, you know, recently graduated from Vanuatu, a bachelor's in civil engineering and another who is a person with autism certificate in engineering in Palau.
But the rest, we don't have those capacity, academic capacity to go and audit, but we have the experience.
And with the different impairment groups, different domains, we ensure that persons with disabilities, the team have different types of disabilities.
They go in and audit.
We audit public buildings, we audit UN officers, We audit evacuation centers, we work with churches to audit the church because in the Pacific, there's three hierarchies, the church, the government, and the Van of Foa, the people, the land.
So we do those audits.
Interestingly, the reception because the experiences of persons with disability, sometimes The experience goes far beyond what's in the textbook.
Again, with lived experience and I was just hearing about the Australian Civil Aviation, with the Pacific Civil Aviation, we're in partnership, we're in the process of having an agreement or an understanding signed.
But nevertheless, we've started engaging in taking excess audit teams to audit our airports in the Pacific.
We've started off with Fiji and We've done trainings to the civil aviation people, we've done trainings to the airlines, the Fiji airways.
We've done training to airport Fiji, we've done the excess audit, and now we're onto the second country Nauru.
When we do that, it's a cohort from Fiji and PDF will go to the country with the group from the OPD.
And sometimes this is a paid service and sometimes not.
If we feel that capacity building is needed, then we negotiate.
Please don't pay us, but can you allow us to send this many people to do this work and you pay their travel and their per diem and so forth.
This is the thing that we do.
With the meteorological people, They wanted us to come in, they wanted to pay our service.
We said, please don't pay us now, you'll pay us in future, but we have about four or five people that you need to pay to come down and have these conversations dialogue that is needed.
The fourth area is funding.
Funding is very important to us.
We talk about redistribution of resources, negotiating funding, and I must acknowledge the government of Australia because even in the development of the ideas strategy, Um, you know, we were in that consultation developing, uh, you know, we were developing the ideas with our recommendations.
We gave us submissions.
They we were asked to, you know, we came together again a couple of times to discuss how does, you know, what should this idea look like? The strategy? What should this Australian international Australian strategy on disability look like? And it's not only that, we were able to partner and have this conversation, dialogue with regards to the agenda.
Strategy, the humanitarian and climate strategy.
There has been a lot of to and fro conversation, dialogue.
So it's not easy because for us in the Pacific, we look at our donors, they're big and we're here, we're small and they're talking to us and we, we don't have the appetite and they're telling us something, and then we can't even say yes, no.
But I guess the the Australian government has been supporting PDF for the past 12 years and we have built that relationship.
That has allowed us to speak up, frankly, to put our cards on the table, and we're in that shared mutual respect understanding.
Sometimes it's not easy, but we come out of it.
We have dialogue, and that is something that is very important.
We try to understand and they can be very bureaucratic, yes.
They'll be bureaucratic and they'll tell us, they'll be our friends, we'll be their friends.
But in times of bureaucracies, they can be using bureaucratic language and we have to prepare ourselves for that.
I guess the mutual understanding and as well as respect with one another.
Last year as well, we signed a procedure of how we do things.
This is both with our big donors, the government of Australia and the government of New Zealand, where we we confirm these are the ways on how we will approach funding, and this is how we will do it.
We will not just give you the funds and you'll implement and you give us your report and you tell us what's the outcome, how many people you reach, but we will do it in segments.
We'll have continuous consultations, we'll have continuous dialogue, and it's written down.
We signed that, and we're implementing that.
Um, and we felt that this is very important because sometimes, you know, being in those small islands and it's very difficult and challenge that because for us, our visitors, we have so much, you know, the custom, the culture that we have, we have so much respect and sometimes it's just we cannot go across the line and say, it's not supposed to be like that.
It's, you know, this is us.
I guess the understanding and the conversation that we always have has brought up to a space and to a time now where I would like to say or I can say that our partnership is fully respected with a lot more understanding and flexibility.
Our partners are understanding us understanding that we have costs.
These are not additional disability costs, these are disability costs.
The cost of reasonable accommodation, the cost of having personal assistance, having sign language interpreters, that things need to be enlarged when it's needed, the cost of having a guide.
These are the main costs that we normally talk about and they do understand this.
I guess the sixth one is the partnership approach where we have with our governments, with our OPDs, with our intergovernmental agencies and with Pacific Disability Forum, we have two key intergovernmental agencies that we work with.
We work with a whole lot of them, but there's two important ones, the Pacific Islands Forum Secretariat and the Pacific Community, the Secretariat of the Pacific Community.
This is a political body, the Pacific Islands Forum, and the other one is a technical body.
We have conversations, consultations.
We're reviewing the regional framework on the rights of persons with disabilities.
We're There's always be a dialogue and, you know, the partnership it's not smooth because if it's smooth and something is wrong.
Sometimes there's misunderstanding, sometimes we stand our ground, sometimes they stand our ground and that's fine.
For governments, it's very important.
We have government focal points that they also have relationships with national OPDs at some point and which is good.
At the same time, the notion, again, of nothing about us without us has to be there, and this is something that our OPD is normally always talk about, that we need to have that voice in whatever forum or in whichever dialogue that we are in that space, that we have to be recognized as who we are and has to be respected as who we are.
The last one that we talk about or that we normally do is accountability and outcomes.
Normally, we do quality assurance on the programs that we do at Pacific Disability Forum.
The partnership, the core design can be with partner to us.
But for us, sometimes the partnership is from us to our OPDs.
Normally, in the past, we give you the fund just like Australia gave us the funds, we give our OPDs the funds.
By the end of one year, you give us back the report, and we realize that it's just not working.
So we developed a buddy system, a buddy system where the staff in the Secretariat at work has a country and they look after that particular country.
If the country has one OPD or two OPDs and they work with them and we realized that, you know, how effective that is because in the short span of time from June to December last year when we had to move out this big amount of funding, but at the same time had to have the a you know, the contribution to how their program should look like as we using the buddy system, it was very effective.
So I guess for us in the whole design, communication with organizations of persons with disabilities and also for persons with disabilities themselves is very important and is very key.
Sometimes this is very difficult and challenging, but we have to find a common ground, just like I was sitting in a room of 60 people, technical people, and I don't know how.
But we're in phase two of our program on the inclusive early warning systems, and I believe that is, you know, the the whole concept of co designing, the respect, the trust, and also the understanding between the partners is very important.
So for effective co designing, it is ultimate that the deal redistributing and also the rebalancing of power and resources is very vital.
Capacity building is also very important both ways for OPDs as well as our partners and I'm challenging them.
We're coming in talking about disability.
You need to tell us about climate.
You need to tell us about oceans.
You need to tell us about all these things that you're doing and they're very receptive about it as well.
Thank you.
Thank you very much for listening.
Thank you.
I'm sorry we've had to draw that to an early close, but I'm just conscious about our next program.
We have run out of time for questions today, but I'm sure many of you will have questions for our panelists and so please feel free to approach them after this event.
Thank you so much for attending and please join me in thanking our wonderful panelists for their contributions.
Thank you.
Thank you.