(Part 2) Civil Society Forum under the auspices of the 19th Session of the Conference of States Parties to the UN CRPD (COSP19)

Turn it like I have done there.
Oh, like this one? Yes.
Like that.
Closer.
Closer.
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Yes.
Okay.
Good afternoon to all of you.
Can they hear me? Good afternoon.
Can you come, please? Good afternoon to all of you.
Their audience.
Be nice to take your place.
Take your seats, please.
She can't hear.
No.
But.
Can you try again? Good afternoon to all of you.
Yes, I think.
Yeah.
Good afternoon to all of you.
Welcome to this session.
It would be nice if everybody can have a seat.
Thank you.
So, um, welcome to the Civil Society Forum.
The second part.
So it's the third session this afternoon.
My name is Nadia Haddad.
I'm one of the two vice presidents of the European Disability Forum.
And I am representing there the European Network on Independent Living.
So before we start this session I would still like to give, um, to those who couldn't have the opportunity to speak this morning.
So I'll ask please.
So I will, I will, I will give the names of four of them and then they can take the floor one after the other, please.
And I'll ask you, please try to be short, as short as possible in order that we respect other ones who prepare their intervention so that they have also the time to do it.
So, um, the four organizations are new society Institute, Lul, this pharmaceutical sea farm and the Sound of Silence Africa initiative.
So if the new Society Institute is present, please, the floor is yours.
Two minutes and a half, please.
Thank you.
Okay.
Thank you.
Um, my name is Doris Raj, and I'm with the New Society Institute in Canada.
Pressing forms of violence against deaf and disabled people vary in different contexts, but what is shared is it's structural in nature.
There are key starting points in addressing structural violence.
First, recognize the diversity of disabled people in a particular context.
Understand the historical foundations that create violence across marginalized groups.
Recognize why policies and programs have not had a significant impact today.
Understand that effective solutions come from the local level developed by those directly impacted, where place based knowledge reveals not just what violence is happening but how, why, where and by whom Specifically how isolation occurs, where supports break down and the nature of exploitative relationships.
I can only use the example of the foundation of structural violence in Canada.
In Canada, deaf and disabled people are white, indigenous, black, racialized, migrant, R2S, lgbtq I plus R of all genders live in the north rural urban areas.
Some are middle to upper class, but many live in poverty.
Violence occurs by design in Canada based on historical policies that have created the conditions that support violence, particularly gender based violence, to flourish, such as the intentional disruption of indigenous communities, especially dismantling the central role of women who played as decision makers in order to secure indigenous lands and resources.
The enslavement of African peoples in the America racialized immigration policies to maintain a white nation while securing the labor to build it.
And, of course, the legislated segregation of disabled people to manage people deemed unproductive.
With the growing demands of industry, the gap in anti-violence work in our is the focus on the symptoms rather than the root causes.
We need to redesign systems, not strengthen structures that were never built to include marginalized people, that is, address the conditions that continue to reproduce violence.
State commitments should invest in growing local level constituencies of low income multiply marginalized disabled people because violence plays out locally in our day to day lives.
So thus must our strategies.
Constituent building is not about strengthening participation, it is about deaf and disabled people constituting the majority where they can exercise leadership and their lived expertise in designing holistic strategies which they know are needed to keep them safe.
Thank you.
Thank you.
So lull please.
If they are not in the room then we go straight away to a sea farm.
Please, the floor is yours.
Yes, please.
Thank you excellencies, distinguished delegates and dear colleagues, because of Sea Farm's mission, I.
I will highlight two egregious violations of the right of persons with disabilities.
First, we call on states to put an end to eugenic abortion, as well as eugenic screening and genetic manipulation of embryos.
Over 90% of children in utero diagnosed with down syndrome are killed before they can ever delight us with their smile.
In Nordic countries, it is nearly 100%.
Several nations continue to develop eugenic abortion programs that screen for disabilities, targeting those deemed inconvenient or a burden Increasingly, these eugenic aims are also being pursued through genetic screening and manipulation.
We urge states to abolish these inhumane practices and to assist mothers and the family with up to date, evidence based information about disabilities, including information on treatment options, support services, hotlines and other relevant resources.
Second, we call on states parties to protect persons with intellectual disabilities from sex rejecting procedures.
State parties have an obligation to end these experimental medical practices.
In recent years, thousands of vulnerable children and adults have fallen prey to an industry that commodifies personal distress for profit in America and around the world.
Gender medicine has pushed experimental and proven sex, rejecting procedures such as puberty blockers, cross-sex hormones and surgical procedures that mutilate and permanently scar vulnerable children and adults.
A recent comprehensive review of sex rejecting procedures, commissioned by the US Department of Health and Human Services, found that gender dysphoria disproportionately affects girls with autism by a factor of 30 in some studies.
Moreover, it found that persons experiencing gender dysphoria have a higher rate of comorbid mental health issues, including depression, anxiety, suicide, suicide, suicidality, self-harm and eating disorders.
This has been documented across the world.
The report concluded that there is no evidence that sex rejecting treatments are effective.
On the contrary, a host of short and long term adverse effects are likely to result from sex rejecting procedures including infertility and sterility, sexual dysfunction, impaired bone density development, adverse cognitive effects, cardiovascular and metabolic disease, psychiatric conditions surgical complications, and, not least of them, regret.
Considering this, state parties have an obligation to explore alternatives to pharmacological and surgical treatments for gender dysphoria, including mental health care and psychosocial services.
Thank you.
Thank you very much.
So I will finish the first round with the Sound of Silence in Africa.
Initiative, please.
The floor is yours.
Okay.
If they are not present in the room, then we will start our session officially.
So the session of today is about resilient societies strengthening care and support systems to ensure the empowerment, the autonomy and the independence of all persons with disabilities.
So one of the note takers for me today is Miriam from the International Disability Alliance.
When we talk about resilient societies in general, we need to have a holistic approach across all sectors.
We must also recognize the intersectionality and make sure that policies and services respond to the diverse realities of people's life.
The 18 pillars of independent living provide a useful framework for this.
They cover six key areas like personal assistant and support, including user led assistance and personal budgets that enable people to live in the community, housing and environment, including accessible, affordable and adaptable housing, as well as accessible public spaces and transport.
Education and work, including inclusive education, lifelong learning and support to access to the open labour market.
When we speak about health and care, that must include inclusive health care, assistive technologies and person centred long term care.
Civil and human rights, including legal capacity supported decision making and freedom from any institutionalization and protection from violence and participation and empowerment, including social, judicial and political participation, peer support, advocacy and accessible environment information.
So this all makes that the session of the day will focus on resilient societies and how to strengthening care and support systems to ensure the empowerment, autonomy and independence of all persons with disability, regardless of the type of disability.
So inclusive care and support system and the community that uphold the dignity and the independency of persons with disabilities are not negotiable for leaving no one behind, while also encompassing the diversity of modern, complex society.
Too often, systems are under-resourced, segregating, and do not reflect community based support.
A resilient approach prioritizing accessibility, affordability, availability and flexibility, and continuity of care and support while taking into account person centered services that adapt across the life course is very important.
It also recognizes, recognizes, and supports caregivers and support persons while promoting the choice of control for persons with disabilities.
Empowerment comes from removing barriers, shifting leadership and ensuring that persons with disability lead the design and the evaluation of systems intended to support them.
So we are here today to discuss about these things.
I will not remind the inspiring questions to trigger the discussion.
We are heard about you statements and what you want to be changed and what do you want the state, the member states to change and implement the cRPD as Stalin mentions.
We also want to hear from you and the audience through the access to the poll of this particular session, by scanning the QR code that will be now shown on the screen, or going to menti.com and putting the code 72896715.
I repeat, going to menti.com and the code is 72896715.
So without further ado I will start to give the floor to the speakers.
I will, uh, each time introduce three of them and then give them the floor as we have 35 organizations who want to take the floor.
I really would like you to be a little bit solidaire and please stay sticking to time between two and 2.5 minutes to give everybody the opportunity.
Who came here today, who wanted to be here to, to get that opportunity also.
So without further ado, the three first one on my list are as down Colombia, the World Blind Union and Solidarity Against Disability Discrimination said so as down Colombia.
The floor is yours.
Hello? Hello.
My name is Monica Cortez and I'm here on behalf of Colombia, an organization that works with families and people with intellectual disability.
During 20 years.
Like the convention.
Uh, I'm also the mother of an adult who is now 26 years old and has an intellectual disability.
Today, I want to address you taking advantage of this 20 years of the cRPD and this important line related to the care and support systems that are being created in several countries, for example, in Latin America, in our region.
My purpose is to make a call for the word family to be taken into account with concerns.
We are seeing that now.
There is talk of care system and only persons with disabilities and their caregivers, but the our country for example, not mentioned the word families.
Uh, caregivers are mentioned giving families and especially mothers the exclusive level of caregiver.
I want to tell to all of you that families who have children with disabilities carry out care, work with our child with disability.
But, uh, it doesn't make us exclusively caregivers.
We are mothers.
We want to work and we take care of other children and members of our families.
And care must be shared with all members of the family, but also with the service that a care and support system should provide.
We want to give our children a better quality of life.
To achieve this, we need governments to take into account that care and support system must have a disability perspective, which means this that our children must also go to care services, for example early childhood, and then go to their schools, inclusive schools, and then have a future life as adults within the community, having the necessary support and adjustments such as support, teachers, personal assistance, accessible transportation, assistive technology, among others.
If mothers carry out care work, we can also.
While the burden of care is distributed, have our own development and performance that help us to get out of poverty and exclusion.
No more segregation of two lives that our child with disability and that of ourselves can.
Stratford don't solve the life of our children.
It's only one.
Please, please.
Uh.
But they can count on services and attention that allow them to develop the most autonomy as possible.
Uh, I finished telling you that the words important.
So we need to change this reality because for the government, it's more easy to give us something, but, uh, designate us to care all our lives.
Thank you.
Thank you very much.
The World Blind Union, please.
Thank you very much.
I'm Santosh Kumar, Rungta, president, World Blind Union.
I just want to highlight two things.
When we talk of support and care, uh, it appears from the or it is often understood that it is a welfare measure when we ask for support and care.
But it is not for us persons with disabilities.
It is an enabler.
It is to create enabling environment and overcome barriers which hinders our participation.
So, uh, the one point that I wanted to make the second point that I wanted to make is when we see a rapid change in from social agenda to economic viability considerations in the government policies at national levels, and we see the impact thereof at regional and international level to in in the form of fund cut.
So in that scenario, we really are concerned about the adverse impact on the gains that we have made through cRPD of ensuring or of undertaking a journey towards full participation and equality and non-discrimination.
So we must, for the future, strategize in a manner where we we we are able to persuade the governments at national level to insist on or, and to, to, to carry out the social agenda in order to ensure that rights of persons with disabilities are protected and recognized.
Thank you very much.
Thank you very much.
So solidarity against disability discrimination.
The floor is yours.
Please.
Hello.
I am from South Korea.
Solidarity against Disability discrimination.
As a DD today I share our greatest pride is pride.
Lightweight public jobs for persons with severe disabilities.
This model completely redefined the the concept of work instead of efficient standard, the job is to implement the Uncrpd such as accessibility monitoring, advocacy and Disability Act.
Over 90% of the workers of this job has intellectual or physical impairments who do not employ.
In open labour market.
Labour market.
Thanks to these jobs, the survivors of institutionalization are no longer mere recipients of care.
They are active agents and employees who produce rights.
However, we face a grave crisis in our.
The starting point of this model may also fire the workers by abolishing the job program, calling it jobs for protest.
Overnight, 400 workers with profound disability lost their livelihoods.
This is blatant violation of the Uncrpd and a terrifying regulation of human rights.
We.
We cannot let this progress stop here.
This initiative must become a global standard, not a cancelled experiment.
I ask I ask for your international solidarity.
Please help us to demand the government to immediately reinstate lean.
State the labour rights of persons with profound disability.
Thank you.
Thank you very much and all support you have it.
So the next three rounds will be the Asian Disability Forum, then people with Disability Australia and then Ferguson School for the blind.
So the disability Forum, the floor is yours please.
Thank you, Madam Chair.
Um a chairperson uh of of Asean Disability Forum.
I would like to begin with a story.
In 1982 and 1992, a car accident left me paralysed.
Health professionals advised my parents to sterilize me to prevent unwanted pregnancies.
I was too young at that time, recovering and trying to understand what disability would mean to my future.
At that moment, because my first pain become my first painful lessons about how society often views women with disability.
We are not rights holders, but are problems to be controlled.
Thankfully, my parents said no and repeated no many times, but many women and girls with disability around the world are not given that protection.
Forced sterilization.
Involuntary treatment, denial of legal capacity, capacity and violations of bodily autonomy still continues.
Often hidden behind the language of care, protection and medical necessity.
This is not only a health issue, but it is a human rights issue.
Women and girls with disability have the right to informed consent, bodily autonomy, reproductive choice.
Equality.
Equality is equal before the law, dignity and freedom from violence and cohesion.
We must continue to challenge these harmful attitudes, reform discriminatory laws and practices and ensure that health care systems respect the rights, views and preferences of persons with disabilities.
Yet the progress of the implementation of the cRPD remain uneven across the world.
Many of the same harmful practices existing before the cRPD continue today.
It is often under more.
Be benevolent language.
Decisions are still made for persons with disabilities rather than with them.
Institutionalization is described as a protection.
Guardianship is described as care force.
The interventions are justified as being in a person's best interest.
This is the cRPD challenged.
This thinking good intentions cannot replace human rights and benevolence cannot justify the denial of autonomy, autonomy, autonomy, legal capacity and freedom of choice.
So try to.
Thank you.
Next step.
State party should invest in the next speaker system.
Thank you.
The legal capacity and strengthened community inclusions prevents institutionalization and ensure accountability through independent independent monitoring and OPD leadership.
Thank you very much.
Thank you.
Please try to respect the time and the other participants.
So the next speaker is this.
People with Disability Australia, please.
The floor is yours.
Liam Pringle and I represent people with Disability Australia as a senior manager for individual advocacy, working directly with people with disability.
I see time and time again that people are excluded from decisions about their own lives, denied dignity of risk and denied the opportunity to practice decision making skills.
I see this with young people with disability in child protection systems as transition directly into adult guardianship arrangements, without meaningful and appropriate support to build decision making capabilities, financial literacy, confidence or independence.
I see this in rural and remote First Nations in Australia, where people with disability under financial management arrangements can be denied access to small amounts of money for items that connect them directly to their culture, their identity and their community.
I supported a First Nations person who could not afford to buy painting supplies for their Aboriginal artwork, something central to their identity, culture and wellbeing I have seen this in people with disabilities when they are assessed through the lens of risk spoken about in meetings, rather than spoken with and excluded from decisions about where they live, how they spend their money, who supports them, or what goals they want for the future.
Too often, systems default to substitute decision making.
It is often framed as protection or safeguarding.
One of the strongest safeguards we can offer is supporting people with disability to make their own choices, build confidence and develop the skills to navigate adversity and stand up for themselves.
People cannot develop these skills when decisions are constant for them So how can disability advocates and others support and respect autonomy of people with disability? First, we must uphold dignity of risk.
People with disability have the same right as anyone else to make everyday choices, take reasonable risks, make mistakes and learn from experience and grow.
Second, we must understand and respect the needs of people most impacted by overlapping systems of discrimination and inequality.
This includes First Nations people with disability, women and girls with disability, people with disability of diverse sexual orientations, gender identities, gender expression and sex characteristics, and people from national or ethnic, religious and linguistic minorities.
Advocates provide providers and decision makers must be trained and supported to understand and respect and promote the rights needed and the lived experience of these communities.
If care and support systems are to promote genuine autonomy, they must stop treating control as protection.
Sorry, but I need to ask you to stop.
Thank you.
And give the floor.
Thank you very much.
So please don't force me to be rude and interrupt you.
So as soon as when you have your two minutes, 15 and you hear that the mic is cutting a little bit to sign language interpretation for those who can't hear me, will make a sign so that 2.5 minutes after you stop sharply.
Thank you very much for respecting this.
So the next one on my list is the Perkins School for the blind.
The floor is yours, please.
Thank you, Madame Moderator.
So we're here today to discuss what it takes to build truly resilient societies that promote independence.
And often when we think about independence, I think we tend to think about employment or living on our own But independence starts much earlier than that.
It starts when a child makes a choice through the work we do at Perkins.
I met a little boy with significant disabilities.
He was deeply loved by his family.
He was fed.
He was kept safe.
Yet many decisions were made for him because people assumed he could not communicate.
Then something changed.
With support from his teachers and families, he learned to communicate.
At the beginning, just yes and no.
Yes I want to play that game.
Or no I need a break.
Simple choices Just the right support.
So for the very first time, this boy could do something that some might take for granted.
He could make choices about his own life.
And that is when independence begins.
Not when someone reaches adulthood.
Independence begins when a person is given the support they need to make choices and have those choices respected.
And that is what resilience support systems look like in practice.
They're not defined by the services they provide.
They are defined by the choices they make possible, just like they did for this boy.
So what changed? This boy's life was not expensive equipment or a costly intervention.
It was people.
A teacher who understood how to support his communication.
A family that learned how to listen.
A community that recognized his right to participate.
Because independence is not built in isolation.
It is built through relationships.
So if we want to build resilient societies, we must invest in systems and strengthen those relationships.
System that supports children and families from the very beginning that equip teachers and caregivers, that enable people with disabilities to make choices and shape their own futures.
Because the ultimate measure of any support system is not is not how much care it provides.
It is how much freedom, choice, and independence it makes possible.
Thank you.
Thank you very much.
So the next we will be the International Society of Physical Medicine and Rehabilitation, and then Cerebral Palsy Foundation and the Deaf Child worldwide.
So the International Society of Psycho Medical Medicine and Rehabilitation.
The floor is yours, please.
Thank you very much.
Delegates.
Members.
Guests.
Colleagues.
My name is Matthew Bartels, and I'm glad to be able to represent the International Society of Physical and Rehabilitation Medicine, known as the Ispm.
The IPM is an organization representing physical and rehabilitation medicine physicians internationally.
It was established over 25 years ago and has grown to represent international PRM physicians throughout the world, with the mission to advocate for the access to quality care and treatment for persons with disability, as well as advocating to improve the quality of rehabilitation care throughout the world.
The PRM now has representation and participation from 90 national societies throughout the world, and participation of physicians from over 100 countries.
With over 30,000 members, it is the largest PRM physician group in the world.
We meet annually in person in Asia, Europe, the Americas and just last year in Africa.
In alignment with our mission and goals, the PRM advocates for increasing communication about disability as well as advocating for education and research, while empowering providers globally to start or support existing programs in physical medicine and rehabilitation.
This is in order to allow persons with disabilities and their families to access quality care and have the ability to receive the medical specialty care that they need and deserve.
The PRM aims to be the leading PRM society and leading voice for persons with health conditions, experiencing or likely to experience disability in the interaction with their environment.
As a participating NGO within Ecosoc, the ICM has been advocating in many sessions on disability, including side sessions at the UN Youth Forum, the International Day of Disabilities and other venues.
We are also tireless participants in the World Health Organization, helping to establish the core components of rehabilitation programs, and our members are contributing to the Who Disability Initiative by helping to build leadership on health equity for persons with disabilities, creating a disability inclusive health sector, elevating health equity for persons with disabilities, and helping to monitor best evidence and establishing indicators for health equity.
The ICM is dedicated to the UN Sustainable Development Goals and has worked to incorporate them in our programs and products.
It is in the light of the alignment of the mission and goals of the IPM and the Civil Society Forum of Casp 19 on the cRPD that we are proud to put forward our achievements as well as seek unity.
Whether the groups present at this meeting in order to advance the cause of persons with disabilities.
Thank you so much for your attention.
Thank you very much.
So Cerebral Palsy Foundation, please.
The floor is yours.
Thank you.
Hi, my name is Rachel Byrne and I am the executive director of the Cerebral Palsy Foundation.
More than 50 million people worldwide live with cerebral palsy, making it one of the largest and most overlooked disability communities in the world.
Cerebral palsy occupies a unique position within the disability landscape.
It touches health, education, employment, social protection and human rights, yet too often falls between systems.
In many ways, cerebral palsy suffers from a visibility paradox.
We are not rare enough to be prioritized as a rare disease, and we are too cross-cutting to have a natural home when everyone is partially responsible.
Too often, no one is fully accountable.
The consequences are profound.
In Uganda, children and young people with cerebral palsy have been found to be 24 times more likely to die prematurely than their peers.
Even in the United States, individuals with cerebral palsy can experience mortality rates up to nine times higher than the general population.
These statistics are not inevitable consequences of CP.
They are indicators of a systems that are failing to provide equitable access to health care, rehabilitation, nutrition, assistive technology education and community support For too many people with cerebral palsy, the greatest threat is not the condition itself.
It is the exclusion from services and supports that make health participation and longevity possible.
But we know what works early intervention, community based services, assistive technology, inclusive education, caregiver support and coordinated care improves outcomes across the lifespan.
And we know that the cost of exclusion far exceeds the cost of inclusion.
While we often celebrate the resilience of people with disabilities and their families, I'd like us all to consider why.
We ask ourselves why resilience is required in the first place.
Resilience should not be a prerequisite for participation.
People with disabilities and their families should not have to compensate for systems that fail to respond.
Our goal should not to be build more resilient people.
Our goal should be to build more responsive systems, supportive communities, and policies that provide protection, opportunity and dignity.
The cRPD challenged the world to move beyond charity and protection towards rights, participation and inclusion for people with cerebral palsy.
That promise remains unfinished.
Today, I urge member states to recognize cerebral palsy as a critical, cross-cutting issue and to invest in early intervention, community based services, caregivers and inclusive communities while ensuring that people with disabilities lead the design, delivery and evaluations of the systems intended to support them.
Thank you.
Thank you very much.
So the next intervention will be video And this we will read out the audio.
Good afternoon.
Good afternoon.
An estimated 34 million children across the globe have moderate, severe or profound hearing loss in.
Over 90% of deaf children are born to hearing parents with no previous experience of deafness.
Universal newborn hearing screening and family centered early intervention.
Reduce stigma, strengthen families, and improve social and educational outcomes for deaf children.
I have a video message from the mother of a deaf child in West Bengal, India.
Her name is Boishakhi.
While Boishakhi is focused on speech and assistive technology other parents may make different choices and as a family, learn sign language or use both signed and spoken language.
As we said, the video is not in English, so I will read the text that appears on the screen.
Please, please.
This is my daughter Shikha.
I want to tell all.
parents if your child is.
Like this.
Do not break down.
The.
Get your child's hearing tested.
And if.
The doctor says they need hearing aids, get.
Them through speech therapy.
You can also make your child talk.
In this.
After getting hearing aids, help your child to speak just as the teacher showed you how to show them and help them understand different things.
If you have learned from the teachers.
On.
The more time you spend talking to your child, the faster they will develop.
You will need to explain things to them.
Help them recognize things.
They.
And.
Can.
You will see that one day your child is able to speak like other children.
They'll be able to speak a lot and progress in their studies as well.
Even in.
So the mother is finished speaking and now the screen says, making every moment count for deaf children.
So if you support early screening in family centered early intervention for children with disabilities, we would love to connect with you.
Thank you.
Thank you very much.
So the next three will be the Disability Federation of Ireland, then A, b, C Italy Brain Injured Children Association and then the Disability Inclusive Development Programs and services.
So the Disability Federation of Ireland, the floor is yours please.
Thank you.
Thank.
Excuse me.
20 years since the adoption of the rights of.
Sorry.
It's the Disability Federation of Ireland who has the floor now.
Thank you.
I'm sorry.
Apologies.
My name is Michael Doyle.
I'm speaking on behalf of the Disability Federation of Ireland.
As we reflect on 20 years since the adoption of the UN Rights Convention for people with disabilities, I'd like to speak this afternoon about what society truly is when it's truly resilient for people with disabilities.
Resilient societies are not simply those that respond to crisis.
They are societies that remove barriers, uphold rights, and create opportunities for people to live independently and participate in society and contribute equally, similar to other participants in society.
Article 19 of the convention recognizes the rights of people with disabilities to live independently and be part of their community.
Activating this is not just thinking good intentions, it's putting in practical supports, accessible communities commitment to ensuring that people with disabilities participate in society as equal citizens.
At Disability Federation of Ireland, our recent report, Bridging the Gap, explored principles of cRPD, which looked at how they were translated locally.
One of the key findings found that resilience and inclusion in communities were built positively, where people with disabilities were involved at the early stage, or participate in discussions where there was an understanding of accessibility and where disability inclusion was recognised as an ownership for all of the society, not just people with disabilities.
Across Ireland.
People with disabilities are taking leadership in their communities influencing local decision, contributing to policy, um, supporting their peers and helping to shape a more inclusive services and community.
I've seen it at first hand where when the right supports are put in place and barriers are removed, people with disabilities can become leaders in their communities and participate, supporting decision making, helping create better services and improved approach to life for people of all walks within society.
This remains that disability people with disabilities aren't just passive recipients of supports, they are citizens, leaders, workers, volunteers, family members, and members of their community who strengthen society.
However, participation in leadership cannot always be taken for granted.
Across many countries, disabled people continue to face barriers limiting action to full community life and decision making.
Building resilience needs to address these barriers and ensure that inclusion is embedded at all aspects of society.
As we look ahead for the next 20 years of Cdpr, we must continue to invest in supports, partnerships and community structures that allow participation.
True measurement of resilience in society is not simply about responding to challenges, it's whether people have the opportunity to belong, participate and contribute and lead in society.
Thank you.
Thank you very much.
So next on my list is A, B, C Italia.
The floor is yours.
Thank you.
My name is Marco S.p.A.
And I am the president of ABC Italia.
Brain Injury Children Association, a family led organization that has been fighting for the rights of people with disabilities in Italia.
For too long, disabilities policies have been based on a fundamentally wrong question.
What services can you provide to this person? This question creates dependence and control.
We must replace it with a rights based question.
What kind of life does this person want to live? Because this is not about services.
It is about choice and the right to make decisions about one's own life, the right to live the in the community cannot be achieved through standardized services.
It can only be achieved when each person has the power to design her own life.
Also, together with the families and caregivers in Italia, and especially in Sardinia, we have shown that this system is possible.
Since 2000, more than 500,000 individualized life project have been funded with over ?2 billion of public investment over the last 20 years.
This is not charity.
This is not an experiment.
This is public policy.
Policies, and it is an alternative to every form of institutionalization.
This experience has contributed to a national reform process in Italia, which recognizes the right to an individualized life project as a key tool for implementing the convention of the Rights of Persons with disabilities.
Yes, state must stop planning and deciding people's lives through standards of service.
Instead, they must make decisions together with persons with disabilities.
No consultation.
But Co-decision co-created in the spirit of convention.
Nothing about us without us.
Thank you for your attention and sorry for my English.
Thank you very much.
So the next speakers are Didi.
The floor is yours.
Please.
If they are not on the room, then we come later back to them So the next three on my list are the Global Autism Coalition Inclusion Australia and the Perception Foundation.
So um, Global Autism Coalition, the floor is yours.
Please.
Thank you so much for having me today And I appreciate the partnerships made here, including with the Australian Federation of Disability Organisations.
I represent the Global Autism Coalition.
Our mission is to secure the safety success and the livelihood of the autistic population through education, technology, policy, design and community activations.
We take a layered approach.
We explore regions and communities around the world to see what works for them, so that other societies don't have to recreate the wheel.
And then we help build systems with ministries of education and health.
And there is an opportunity to do that far and wide.
We've been in Eastern Europe, Ukraine, Israel Palestine, Iraq, the Gulf countries and small pockets of the United States, including polygamist and indigenous communities.
Right now, we have a focus on Iraq and Afghanistan and the unique challenges that are presented in those regions.
We're doing this by creating programming and also holding coaching webinars for clinicians, parents, teachers, etc., called autism in the Time of War.
This mission is personal to me because it affects more than just one loved one.
Originally, I am from Aurora, Colorado.
It's in the middle of the United States and completely landlocked.
Nestled in this town is Cherry Creek Reservoir, which is a small man made lake that you could see in its entirety from an elevated road on just one side.
When when I was a child, I used to think, wow, that's the biggest body of water I've ever seen in the entire world.
And then one day I saw the ocean and that changed everything.
It broadened my mind.
And what I've come to realize is that this is very analogous to autism care.
We found that higher education is the critical element to establish a standard of care that provides holistic therapeutic solutions, while also helping to destigmatize the diagnosis.
Bringing autism specialty tracks with the goal of accreditation into university settings begins the advancement of evidence based care.
Universities are where minds expand, experiences are shaped, new practices originate and form the very bedrock of the future.
On a parallel track providing proper educational access, vocational opportunities and workforce entry points carries only a net positive for communities and full nation states.
In Iraq, for example, integrating just 5% of autistic adults into the workforce could infuse an estimated $2.8 billion into Iraq's economy through market wage employment.
There is an extensive adoption process to do this, as you might imagine, but the payoff is forever.
And thank you for wrapping up.
Yeah Uh.
Thank you.
I was just in time.
Thanks a lot.
So, um.
Inclusion Australia, please.
The floor is yours.
It's gone red.
Okay.
My name is Melinda Brown.
I am a self-advocate from Australia.
Inclusion Australia.
Today I want to talk about women with intellectual disabilities and their healthcare.
Article 25 of the cRPD says that people with disabilities have the same rights to be healthy and as.
As everyone else.
I have had both good and bad experiences with their health care system.
Sometimes the doctors use hard words and medical language.
That is.
I do not understand.
This can make me feel confused, anxious and left out of decisions about my own body and health.
I think healthcare system needs to be more to make infant information more accessible and understandable for people with intellectual disability in Australia.
People with intellectual intellectual disability people die 27 years earlier than people with without intellectual disabilities.
For example, I had arena put in.
I wanted more information about the procedure and what would happen to my body, but there was no easy read information available.
I also have a cyst on my ovaries, and it can be difficult when I see different doctors all the time.
I have to explain my story again and again.
These experiments show my strong care and support system matter resilience.
Health care systems must empower people to.
With intellectual disabilities and disabilities to understand their health and make informed decisions and feel safe when accessing their care.
For health care workers who need more training about how to support people with intellectual disabilities in the respectful and accessible ways.
Please explain things clearly.
Use easy reads and visual information and take time to get to know the person.
For women with intellectual disabilities should be be listened to and respected and included in decision about our own health and bodies.
Thank you.
Thank you very much.
The floor is to the Perception Foundation.
Please.
It's to be my mic, not your mic When it's ready.
Is it okay? Oh.
Is it? Yep.
Oh, okay.
Sorry about that.
Dear excellencies, delegates and friends, I want to ask you all one question.
Who gets to write a human life? The answer is simple.
What's not simple is why? For millions of people with disabilities, that right has never been real.
For generations, people have lived inside systems built for them based on assumptions about who they were before they were ever given the chance to define themselves.
Millions of neurodiverse individuals are funneled into segregated workshops, isolated day programs, group homes where they spend their lives surrounded almost entirely by those with disabilities and paid staff.
We celebrate every moment in history that challenged segregation, and yet we overlook segregation happening right now in front of us, not of race or religion, but of way the mind works.
This begins with the language that we use.
We divide people neurotypical, neurodiverse, normal and abnormal, typical and atypical.
And buried in those words is a belief that only one way of thinking is the standard, and all others are deviations.
But that assumption does not hold up.
The human brain contains nearly 100 billion neurons and trillions of connections, which is more complex than any system humanity has ever built.
And yet, despite understanding so little of it, we behave as if there is only one single way for it to function, when in fact, neurodiversity is not evidence of something gone wrong.
It is a natural expression of what has gone right.
The same diversity that exists in our cultures, our languages, and our identities is now reflected in our minds.
And yet, instead of designing for that reality, we design against it.
And that is where true disability arises.
When a wheelchair user cannot enter a building, the problem is not the wheelchair, it is the staircase.
When a non-speaking individual cannot access communicative technology, the problem is not that they have nothing to say.
It is that we fail to give them the tools to say it.
When a student is excluded because a classroom cannot meet their needs, the problem is not that student.
It is the design of the classroom.
When we make decisions about someone's life without ever asking them, we are not protecting them.
We are erasing them.
However, our governments and our systems have continued to propagate these issues.
This is why Maya and I founded the Perception Foundation, which is today the largest youth led nonprofit for neurodiversity and mental health, reaching half a million people worldwide in over 61 countries.
We're building the first pre-K three through 12 curriculum that replaces stereotypes with understanding.
We're creating the first cost effective sensory rooms in schools, hospitals, and public spaces, and we are ensuring that people with disabilities are not just included in the conversations, they are the leading on our boards and in their communities And so I return to the question we began with, who gets to write a.
Thank you, please, for wrapping up? The answer is certainly not governments, not institutions, not parents or professionals.
But it's every person.
But that right is not self-executing.
It must be built by all of us today.
Thank you.
Thank you very much.
So the next three on my list are the International Council for Education of People with Visual Impairment.
Then we have the European Network on Independent Living, and then the Neurodiverse Peruvian Coalition So the International Council for Educational People with Visual impairment.
The floor is yours, please.
Distinguished chair.
Excellencies, colleagues, it's been so wonderful to listen to all the speakers today describing passionately about your causes, all the extra power to to the mothers and fathers advocating not only for their own child, but for many children worldwide.
I'm to a mom and I am honored on as the president to speak on behalf of the International Council for the Education of People with Visual Impairment.
We warmly welcome the focus of this session on strengthening care and support systems.
We would like to emphasize that truly resilient societies are built not only through care, but through systems that actively develop capability, autonomy and independence for persons who are blind or have low vision.
Access to quality, inclusive education is one of the most powerful and sustainable support systems.
In particular, Braille literacy is foundational.
It enables independent access to information, communication and learning across the life course Without access to Braille, many individuals remain dependent on others to read, write and engage with the world.
With Braille, they gain the tools to participate fully in education, employment, and community life.
The convention of the Rights of Persons with disabilities affirms the rights to education access to information, and full effective participation in society.
However, in many countries, Braille is not explicitly recognized on national laws and policies.
As a result, it is often under sourced, inconsistently taught or overlooked altogether.
This represents a significant gap in national support systems.
If we are serious about strengthening care and support systems, we must ensure that they include the conditions for independence embedding Braille literacy within national legislation, education policies and curriculum frameworks, investing in the preparation and ongoing professional development of qualified teachers of students with visual impairment.
Ensuring the availability of accessible learning materials, including Braille in both print and digital formats.
Promoting access to assistive technologies, including refreshable Braille displays.
Supporting families and communities to foster early literacy and independence from the earliest years.
These are not optional or specialized services.
They are essential components of inclusive and resilient systems that enable individuals to be to move from dependence to independence.
Thank you.
Thank you very much.
So the European Network on Independent Living, the floor is yours.
Thank you.
Uh, we at annual monitor the implementation of the UN cRPD in Europe.
We do advocacy work at the EU level to achieve changes in legislation so that the rights promised in the convention become a reality in Europe.
There is little awareness among the public and decision makers about the extent to which disabled people are excluded from equal participation in society, according to the EU Foundation for the Improvement of Living and Working Conditions, institutionalization has increased 29%.
Our Independent Living Survey has produced extensive evidence that access to personal assistance is not guaranteed at all, or only minimally warranted.
Homelessness is on the rise, and in some member states, a quarter of the homeless population have a physical and 60% psychosocial impairment, and its long term budget, the multiannual financial framework the EU will have 1.98 trillion at its disposal and could make a difference by investing in person centred services in the upcoming Affordable Housing Act and the simplification package.
The EU could make universal design standards binding among members of the European Parliament and the national governments.
There is little willingness to pursue policies that contribute to the implementation of the Uncrpd and to listen to our arguments within the European Commission.
The mainstreaming approach mandated by the convention exists mostly on paper, unites and directorates that don't specialize on the topic tend to ignore disability aspects.
Now we call on decision makers to change their ways.
Now we need binding legal requirements for the EU budget.
To implement the Uncrpd, we need an expansion of EU financed personal assistance schemes and centers for Independent Living.
Universal design and accessibility must be key aspects in all legislation on housing.
We need a stronger recognition that disability exclusion and the housing crisis are inexorably linked.
One cannot solve on one without the other.
Sorry.
If there is no change, the EU will invest huge amounts of money into services which are not in line with the convention, and also more expensive in times of strained public budgets.
We cannot afford that.
If there is no change, the Europe will invest huge amounts of money into housing that is not accessible and thus cannot be used by many of the people who need it the most.
Thank you.
thank you.
So the next speaker will be the neurodiverse Peruvian Coalition.
The floor is yours, please.
Thank you.
Afternoon, excellencies, colleagues and fellow advocates My name is Carolina Diaz Pimentel, and I'm a journalist, disability rights advocate, autistic and bipolar woman from Peru.
I'm a member of the Farming communities of for inclusion.
I founder of More Than Bipolar, executive director of Peruvian NeuroDivergent Coalition, a community led organization created by and for neurodivergent people.
As neurodivergent people and people with psychosocial disabilities, we are often seen primarily as recipients of care but some of the most transformative forms of support I have experienced did not come from institutions.
They came from community and peer support This distinction matters because too often care is associated with control, paternalism and decisions being made on our behalf.
Support should mean something different Support should respect our autonomy, our preferences, our choices, and our right to make decisions about our own lives.
Through the Peruvian NeuroDivergent Coalition, we have built a community of nearly 300 members.
We support one another through crisis, grief, unemployment, economic hardship, discrimination and the everyday challenges of life Sometimes support means facilitating someone navigate a bureaucratic process.
Sometimes it means supporting someone.
Find a job, organize a room, attend an appointment, or simply get through a difficult week.
We also organize neurodivergent picnics, one of our signature initiatives.
These are spaces spaces designed with accessibility and flexibility in mind, where people can show up as they are without pressure to mask, conform or follow typical social expectations.
People are free to participate in whatever way they feel comfortable to them.
Talk about the interest rates when they need to, and know what they will not be judged.
Again and again I hear participants say the same thing for the first time.
I don't feel alone.
I was once one of those people.
I know how it feels to be isolated, misunderstood, dismissed, or made to feel that your experiences do not matter.
I know the pain and hopelessness that come from believing that nobody understands what you're going through.
No one should have to carry that alone to more than bipolar.
We have built a community across Iberoamerica where we exchange resources, practical tools, information, and lived experience.
These forms of knowledge are often overlooked, yet they can be life changing.
Sometimes the most valuable support.
Support comes not from a professional, but from another person who has faced similar challenges and is willing to share what they have learned.
For me, this community has been essential.
Yet communities often treated as an optional extra, while medication, therapy or even institutional institutionalization are often assumed to be default response for many persons with disabilities, especially those of us with psychosocial disabilities, this response has too often involved coercion, violence, or denial of our choices, preference and autonomy.
Communities should not be a luxury for support should not be a luxury.
These are essential for support.
That is what our rights based support system looks like in practice, not people speaking for us, no people deciding for us, but we supporting one another to exercise our autonomy, preferences and choices.
Thank you.
So the next few on my list are the authentic.
Caribbean Foundation UN area, the headquarters, and the nonprofit Autism Without the voice slash youth publication and socio economic forum.
So authentic Caribbean foundation.
The floor is yours, please.
I am not in the room.
Then we go to the NRA headquarter.
Please.
The floor is yours.
Distinguished colleagues.
Ladies and gentlemen.
Um.
I speak today as my capacity as a disability senior advisor to give voice to refugees, particularly those living with disabilities, who are navigating an unprecedented humanitarian catastrophe each single day.
The challenges facing Palestinian refugees with disabilities grow more severe.
They face intersecting barriers that are compounded with displacement, conflict, poverty and protracted crisis.
In Gaza.
Specifically, it is estimated than 1 in 4 individual injured.
During the conflict has acquired a new lifelong disability.
At least 35000 people are lived that at least 35 people believed to have sustained significant, um, permanent hearing damage from repeated explosion.
And the number of life changing injuries continue to increase daily.
With Gaza now hosting the largest group of children amputees in the modern history.
83,083% of people with disability in Gaza are reported to have lost their assistive devices, while batteries and replacements are almost impossible to obtain due to funding shortage and inhumane restrictions on the um on on the entry of vitals.
Despite these challenges, um, despite these challenges, constraints, and volatile security context, Oneiroi has continued its commitment to inclusion in the heart of humanitarian action.
Oneiroi continue to work on mainstreaming disability responsive and responsive triage, early detection, and critical mental health and psychosocial support within primary health care.
But Oneiroi cannot for sure carry this momentum um task alone while facing.
While facing immense um funding cuts and resources challenges.
We call on all of the international committee community withdrew their attentions for advocacy for um, like participation, inclusion for enhancing and increasing and listening more to the voice of people with disability.
Finally, funding inclusive emergency response and informative, um, action.
We call on the international community also to not abundant Palestinian refugees with disability and to extend unwavering, um, political and financial support to.
Thank you Thank you very much.
Next speakers please is a non-profit autism without a voice and ipsf The floor is yours please.
Good afternoon.
Thank you for the floor, Madam Chair.
Excellencies, distinguished delegates, colleagues and friends.
My name is Benjamin Drawn.
I am a 17 year old student at Tottenville High School in Staten Island, New York, and the Director of Educational Services for Autism Without a Voice.
I'm taking the floor today on behalf of the youth publications and socio economic forum and Autism without a voice.
A few months ago, we hosted a science lab for children with developmental disabilities.
At the end of the event, a parent came up to me.
She was emotional, nearly in tears, and she told me how proud she was to see young people stepping up and making a difference in their community.
Then she told me something I have never forgotten.
She said that her son came home excited, not because he had won something, not because he had received an award, but because for the first time in a long time, he felt like he could do things on his own.
He felt included, he felt capable, and he felt like he belonged.
For many of us, that may sound like a small moment, but for him, it meant discovering something many of us take for granted the confidence to believe in himself and his own abilities.
That experience taught me something important the things that shape our lives often not buildings, budgets, institutions, or titles, but rather experiments, experiences and communities who do care.
At Autism Without a voice.
We actively provide free programs throughout New York City for children, teens, and adults with developmental disabilities through social events, science activities, building projects, and recreational programs.
We create opportunities for individuals to learn, connect, and grow.
And through our educational programs, we provide educational services in all of the academic subjects, as well as music and language instruction.
We have seen these opportunities help individuals build confidence, determination and independence within themselves.
As someone who lives in New York City, one of the most resource rich cities in the world, I've learned something surprising.
Even here families often struggle to find affordable programs, educational support, and opportunities for meaningful social engagement.
If these barriers exist in a city like New York, we must ask ourselves and reflect what families are experiencing in communities with fewer resources and fewer opportunities.
As a high school student, I never expected to be speaking at the United Nations.
Yet standing here today reminds me that meaningful change does not always begin with a government program, a large organization, or a major investment, but rather with a conversation, a volunteer.
And sometimes it begins with community deciding that everyone deserves the opportunity to participate.
So if there's one thing that I hope you take away from my remarks today, it is that the young man from that science lab will probably never remember my name, but I hope he remembers how he felt that day.
Because when a person begins to believe in themselves, doors begin to open, and sometimes all it takes to open that first door is someone willing to care.
Thank you so much.
Thank you very much.
So the next three on my list are Access Israel, the Purple Vest Mission, and the center from people with disabilities and Qatar social work.
So access Israel.
You have the floor, please.
Okay.
They're not on the in the room.
Then we can go to the center for people with disabilities.
Thank you chair.
My name is Fatma al-Tamimi and I represent the center for persons with disabilities in the state of Qatar.
Over the years, we have made important progress in providing education, rehabilitation and support services services for persons with disabilities.
But today I would like to ask a simple question do these services work together to help people live independently and make their own choices? From our experience at center, one of the biggest challenges is not the lack of services.
The challenge is that services often do not work together as one continuous journey education, rehabilitation, family support, assistive technology and employment and employment.
Employment opportunities are often provided, provided separately.
As a result, many persons with disabilities and their families struggle to move from one stage of life to other to the next.
A truly inclusive support system should should grow with the person through their life.
It should help them learn, participate, build relationships, develop skills, and contribute to their communities.
At center, we support persons with intellectual disabilities and autism through integrated services that combine education rehabilitation, assistive technology, and community participation.
We have also launched initiatives such as Aysham, which promotes economic participation and helps employers recognize their abilities and potential of persons with disabilities.
Through initiatives like some, we have seen young people with intellectual disabilities and autism demonstrate skills, confidence and abilities that many people never expected.
We have also learned that families are essential partners.
Supporting persons with disabilities means supporting families and communities as well.
Today, a new technologies and artificial intelligence over existing over exciting opportunities to strengthen learning, communication and independence.
However, technology should bring people closer to their communities, not further away from them.
It should create opportunities, not new buries.
My message today is simple let us build support systems that work together, grow with the person, and focus on outcomes.
Success should not be measured by the number of services we provide.
But but, but by the number of people who are able to live independently and participate fully.
and shape their own future.
Thank you.
We extended the session already until 230, so please try to stick on two minutes please and respect for the others to speak So the next speaker on my list will be now Achim Israel as they were not there before.
The floor is yours and two two minutes please.
Very much.
Hello, my name is Larry Ryan, director of the New York Region of Friends of Achim, USA, the American affiliate of Achim Israel.
Achim Israel works to advance the full and inclusive participation of people with intellectual disabilities across Israeli society through advocacy and impactful programs Founded in 1951, we operate in 3093 municipalities across Israel and support 38,000 individuals with intellectual disabilities and approximately 140,000 family members.
Yet despite this progress, people with intellectual disabilities still face exclusion that hinders access to education and employment, and curtails social development and their legal rights.
So in recent years, there has been a growing recognition that people with intellectual disabilities have the right to make their own choices and actively participate in shaping their lives.
When leading initiative, advancing.
This vision is called Our voice, a self-advocacy and leadership movement guided by the principle.
Nothing about us without us.
Today, our voice includes 55 self-advocacy groups across Jewish, Arab, and Jewish communities involving 550 self-advocates through weekly meetings.
In accessible settings, participants build confidence, learn about their rights, and develop the skills to speak up, make decisions, and advocate for themselves and their communities.
At its core, our voice empowers people not only to be heard, but truly to be a leader.
This leadership is always transforming reality.
Self-advocates engage directly with members of the Israel Parliament, contributing their experience and helping shape policies that affect their lives, from independent living to inclusive employment and fair wages.
Like all of us, they experience the world through multiple perspectives shaped by their gender, culture ethnicity, religion, personal interests, and of course, professional aspirations.
Their voices enrich public discourse, strengthen our institutions, and remind us that meaningful participation belongs to every one of us.
Because true inclusion is not only about being present, it is about influence, leadership, and power.
Thank you so much.
Thank you.
So the floor now is for the Qatar social work.
Hello, my name is Mohammed Al-shammari I am an individual skill training specialist, rehabilitation services for Qatar.
Social work, a truly inclusive support system is not built around an institution.
It is built around people.
It respect dignity, promotes independence and ensures that every person with disabilities has the right to make choices about their own lives.
Care should never mean control.
Support should never mean isolation through inclusion.
Mean empowerment, individual to live, learn, work and participate fully within their communities.
Yet across many countries, we still see systems that are fragmented, under-resourced and overly dependent on segregated models of care.
Too often, people with disabilities face barriers in education, health care, transportation, communication, employment, and access to assistive technology.
Families and caregivers are left without sufficient support, while people with disabilities themselves are excluded from decisions about their very services designated for them.
If we want resilient societies, we must invest in communities based services that are sustainable, accessible and person centered across the entire life course.
This includes early intervention, rehabilitation and demand, living services, accessible housing, inclusive education, mental health support, assistive technology, and opportunities for meaningful participation in society.
We must also recognize caregivers, families, professionals and support workers by providing training, resources and emotional support.
But we must do that in a way that strengthens autonomy, not dependency.
The voice and choice of the person with disability must always remain at the center.
Most importantly people with disabilities must not only benefit from support system, they must lead them.
They must help design policies, evaluate services, shape technologies, and guide national priorities.
Nothing about us without us as not as simple as a slogan.
It is foundation of inclusive and and development at institutions such as New Center for the blind.
We witness every day how important empowerment, accessibility, training and community participation can transform lives when society removes barriers and provides the right support, people with disabilities do not merely survive, they thrive, contribute, innovate and lead.
Let us move beyond viewing disabilities through the lens of charity or dependency.
Let us build system rooted in human rights, dignity and inclusion.
Because resilient societies are not measured by how they support the majority, but by how they empower every individual to live independently and with dignity.
Thank you.
So the next three on my list are disabilities Thailand, doors of Hope and Learning Disability England.
And include me to the floor is yours to disability Thailand please.
Thank you madam from disability Thailand in Thailand Disability Identification card is a gateway for persons with disabilities to receive disability rights and welfare including disability allowance, free education and free health care.
Although in Disability Empowerment Act, the definition of persons with disability includes impairments and social barriers.
Thailand has long been using medical model in disability assessment until the late 20th and 25, with recommendation from the cRPD Committee.
Thailand has announced the Social Disability Assessment, focusing on self assessment, environmental barriers and social participation.
The support for this approach argue that this help marginalized group to receive this disability rights.
It brings a social barriers into real practice and it increases the number of persons with disability.
Closer to the real number are some critiques argues that, uh, the lack of standardized assessment tool will force officials to use their, their subjective judgment.
And, uh, it may bring the confusion to the policy target.
For example, employers may need to hire only persons with only disability.
Uh, so we need some improvements.
First, we need to develop standardized assessment tools.
And second, we need to conduct the individual need assessment.
And lastly, we, the government need to manage budget adequately to support the increasing number of persons with disability.
Thank you.
Thank you very much.
So now the floor for daughter of Hope.
To push on the button, please.
Sorry for that distinguished chair.
Um, fellow panelists, my name is Jacqueline Shibahara, founder of um organization called dose of Hope.
I address you today from the grassroots where commitment of the u n, c, r d is tested daily.
Our reforms are called truth.
Disability inclusion is not just a moral obligation, it is a critical investment in development and equity.
Those of those of hope.
Kenya is addressing various structural gaps by co-creating community based activities that are both impactful and scalable.
We focus on three critical pillars holistic care and therapy, caregiver resilience, economic autonomy, where we empower and equip women and youth with disabilities, and mothers of children with disabilities with various entrepreneurship, uh, entrepreneurial skills to sustainable, sustainably strengthen and scale this proven grassroots model.
We need genuine multi-sectoral collaboration.
Today.
My call is just twofold.
One to the UN member states and donors, invest in accountability.
Let's move beyond pledges, align local and national budgets with the U, C, R, D, ensuring ensuring targeted financial and psychosocial support for caregivers and making meaningful, meaningful partnership partnerships with disabled persons, organizations like ours, and mandatory a mandatory element of funding two to all corporate and philanthropic partners.
Invest in grassroots organizations like ours.
Um.
Our model works with a model works, but capacity to transform lives is limited by resources.
Thank you very much.
Very much everyone.
Thank you very much.
So the next speakers are learning Disability England and include me to.
I am presenting today on behalf of Learning Disability England.
Include me too and my privileged role as the mother of my son who has learning disabilities, cerebral palsy and additional needs.
People with learning disabilities want the same things as everyone else relationships, home purpose, contributions, citizenship, health, choice and control.
20 years of policy legislation rights frameworks have not yet delivered the promise of cRPD for many people with learning disabilities who continue to experience shorter lives, worse health outcomes, segregation and inclusion, limited choice and control, poverty and unemployment, inaccessible services decisions made about them rather than with them.
The issue is not a lack of rights on paper, it is a failure to translate into everyday lives.
Intersectional inequalities.
What we heard in deserve better and equal treatment.
People with a learning disability from black, South Asian and minority ethnic backgrounds face shorter life expectancy expectancy triggered by poorer healthcare access, experience and outcomes.
The report provides powerful evidence that people often experience services that are organized around systems rather than people.
Common themes include people feeling invisible, people having to fight services, focus on deficits, racialized and minoritized.
People with learning disabilities are rarely recognized in policy.
Fragmented support based on poor data about racialized and minoritized people.
People with learning disabilities continue to experience significantly reduced life expectancy, higher levels of avoidable mortality, higher levels of preventable illness, communication barriers failure to recognize cultural or support needs.
Health inequalities are human rights issues.
Poor health outcomes are a result of systematic discrimination, inaccessible services, failure to implement rights.
The call to action is one judge systems by whether people can live good lives, not by service outputs.
To support people to live in their communities with choice, relationships and belonging.
Three end avoidable health inequalities and four measure what matters.
Measure the quality of life, relationships, choice, control and dignity.
Inclusion well-being, not simply service activity.
People with learning disabilities are not asking for special treatment.
They are asking for equal treatment, equal rights, equal opportunities, and the support and respect needed to live good lives.
The cRPD set out the vision.
The challenge now is making it real.
Thank you.
Thank you very much.
So the next three speakers on my list are Ida do you, Clemens Institute from Sao Paulo and the Korean Disability Policy Development Institute.
So relevant.
The floor is yours.
Please remind.
Be careful with control, protection with restrictions and support with institutions.
For too long, professional families, institutions and states have decided, uh, our future.
Limiting our autonomy, claiming it's for our well-being.
That's why when a person cannot decide where they are going to live or participate in their community, or what they're going to do with their own body, particularly women and women with disabilities, it's not an individual problem.
It's a question of human rights.
The convention changed the way we look at this, so that persons with disabilities have rights.
They're able to take decisions, uh, have life projects.
But today this still, uh, there's still a huge distance between what the convention states and the doors that have opened up and what happens on a daily basis.
That's why we need to, uh, address resources, for example, and powers in Latin America.
Um, public institutions continue to fail to give us support that we need for our autonomy.
Families continue to be the main support system.
Basically, women, they are the ones that have the care duties that should be provided by the state.
In Argentina, difficulties accessing treatments, pensions and treatment, uh, endanger the basic basic life conditions.
And when those rights are restricted, then we our right to citizenship is basically restricted as well.
What we need is a discussion on care and support that is understood as a discussion on democracy and full citizenship.
And we need to ask ourselves who's taking the decisions? Who's going to take those decisions for us? When we don't have that support, our daily life is restricted, and the opportunities that we have for our life projects is also restricted.
Um, if we don't have accessibility and support technologies or community services available, all that's left is exclusion.
Uh, support is not charity.
It's what we need to be able to study, participate politically in our communities.
As long as persons with disabilities, um, are, are receiving policies designed for others that won't solve the problem.
We need to ensure that no decisions are taken about us without us.
And there needs to be monitoring and evaluation of the policies that affect our lives.
We need personal assistance provided by the state, uh, support technologies that we can afford.
Um.
And strategies for monitoring led by persons with disabilities that's essential to follow a cross sectional approach, particularly this is important for women, indigenous, uh, those of African descent descent that have disabilities.
Thank you.
I give the floor now to Joe Clemens Institute from Sao Paulo, please.
I am a woman and I have a son with autism, too.
And it's an honor to speak at the Civil Society Forum.
I speak on behalf of Instituto Clemente, a Brazilian organization with more than six decades of work dedicated to health inclusion, research and defending the rights of persons with intellectual disabilities, autistic people, and people with rare disease.
Um.
It's clear that rights become real when support systems reach people in their daily lives.
For autistic people, care cannot be fragmented or centered only on clinical appointments.
It must strengthen environments where development and autonomy actually happen the family, the school, and the community.
For this reason, we've developed a family support model for autism based on a biopsychosocial person-centered approach.
It recognizes autistic people as rights holders, while understanding that caregivers need information and emotional support.
Families should not only follow professionals instructions, they must actively participate as as an essential part of ecosystem of care.
Um, this structure must be aligned with international evidence showing that caregiver training improves child participation, communication, and overall quality of life.
It also meets the Brazilian reality, where families face long therapeutic journeys and a high emotional and financial burden.
Resilient societies require resilient support networks.
We must understand that supporting families is not a replacement for public responsibility, nor should families fill the gaps of fragmented system.
The starting point must always be the person with a disability and their right to necessary support.
Before we care for those who care, we must ensure robust formal network.
If you want to.
The next phase of cRPD implementation.
To be effective we must invest in public, person centered support systems that guarantee autonomy and participation.
These systems must empower families while keeping the person with a disability firmly at the center Ultimately, public policies and family strengthening exists for one vital purpose to ensure that persons with disabilities can live with dignity and full participation.
Thank you very much.
Thank you very much.
So the next speaker is the Korean Disability Policy Development Institute, please.
I'd like to make a presentation to share Korea's experience in developing an integrated care and support system for persons with disability, for the purpose of aging in place in their community as a pilot project.
Many countries still operate fragmented delivery system in which health care, welfare, housing and care services and separated.
As a result, persons with disabilities often face barriers in accessing support and remaining dependent on families, institutions and hospitalities.
To address these challenges, the government of the Republic of Korea enacted the Act on Integrated Support for Community Care in March 2024.
Its goal is to transition from institution centred care to the community based integrated Support System.
Core services include home based medical care, home care services, housing modification, mobility support.
It's one of the most important features of this project was the transition from the passive application based on welfare system to proactive rights based support system.
Korean model.
Therefore focus on proactive identifying persons with disability who had been excluded from existing support system and link them to integrated community service based on individual support plan.
The evaluation result was very high.
Positive positive overall satisfaction reached 82% and participants reported improving in daily living.
Health care access community Participation Korea's experience offer several important lessons.
The first, disability policies must be centered, person centered rather than institution centered.
Second, health, health care, housing, mobility, welfare and social participation must be connected Third, reducing gaps in care require proactive outreach rather than waiting for persons to apply for services.
If integration can prevent installations, unnecessary hospitality and social isolation, it generates both social and economic benefit over time.
Thank you.
Okay.
Thank you very much.
So the next three speakers, mujer de dos barreras.
And then the lounge du monde de pour les jeunes de demain.
And then love and acceptance.
La mujer de barreras.
The floor is yours, please.
I'm sorry.
Thank you.
Coordinadora.
Thank you.
I'm coordinator for the Women Breaking Down Barriers organization, and I'm here with my colleague, uh, from the Latin American team for Justice and Gender.
We are from Argentina.
We've been working with the firm conviction of the importance of groups coming together, the feminist group, um, Feminist Collective and those with disabilities, because we understand that we need to work intersectionally our focus point, our central focal point is care systems and support systems, but we also work in preventing violence, uh access to justice.
And we are also seeing the challenges and the barriers and the gaps that still exist faced by women with disabilities, um, to achieving comprehensive gender policies.
The Convention on Persons with disabilities has been going now for 20 years.
And there are basic issues that we feel are very important.
One of them is to realize that care and support should not limit the autonomy of those with disabilities.
Um, they should be seen as complementary and, uh, care should be, uh, inclusive self-care with support.
It's also important to recognize the violence that we face women with disabilities, when we attempt to access care and help.
That's why we are demanding that we develop regulatory frameworks and mechanisms for monitoring.
Uh, with regard to this care that we've already mentioned, we'd also want to stress the importance of continuing to.
Break down stereotypes that continue to affect care provision.
Uh, also violent practices need to be addressed that we faced, such as forced sterilizations, for example.
We need to continue to work in the care and support system.
From a rights perspective.
And stressing the need to produce statistics that give a breakdown with the necessary data with regard to disability and the feminization of poverty Thank you.
And please.
The next speaker, Louange de demain.
Please stop after two minutes if possible.
Okay, I'm not in the room.
Then we go directly to love and acceptance.
They are not in the room.
Okay, then.
Then we go to the two last ones.
So the Associazione de Arruda de Gracia vulneraveis e Deficiencias de Angola.
I'm really sorry for my Portuguese.
The floor is yours, please.
And not in the room.
Okay, so the lesson on my list RENT, professor.
Okay.
Okay.
So if they are not on the list.
I'm really sorry.
There was not moderating the session, but I was chasing you through your through your interventions and so minutes.
So without further ado and by respect for the next session, we will ask now the next moderator to come to take the floor, please.
And the wrap up will be done at the end.
So I will ask Maria Salvan to come and take the floor, please.
And the note taker will be Elizabeth Lockwood from CBM.
Completion front to take the next session.
And thank you very much for your patience and sorry that we chase you up, but everybody who was present has had an opportunity to speak.
Thanks a lot and hope that the leaders will hear the wrap up tomorrow.
Thank you all.
It's like this and I think you can start.
Welcome everyone.
To the last session.
Please find your seats and we'll start.
Please find your seats everyone and we will get started.
So welcome to this next session.
My name is Margaret Serum here today in my capacity as board member of the International Disability and Development Consortium, my daily role is as director of the Atlas Alliance that coordinates the international solidarity work of Norwegian organizations of persons with disabilities.
It is my great privilege to be moderating this session titled From Participation to Representation Enhancing Accessible Civic Engagement, Leadership and Advocacy in Political and Public Life.
This session is grounded in paragraph 43 of the cRPD that clearly states that state parties shall consult and involve persons with disabilities through their representative organizations in decision making processes concerning issues related to persons with disabilities.
So strengthening accessible civic engagement requires inclusive policies and removal of structural and attitudinal barriers.
It also demands recognition of the diversity within the disability community and support for meaningful advocacy.
Moving from participation to representation means ensuring persons with disabilities are not only included in civic processes, but are empowered to influence and shape public decision making.
The global aid cuts have greatly impacted funding to Opds in the Global South, and many experienced setbacks to their advocacy work and insufficient funding to stand their ground.
Uh.
All the speakers have received some guiding questions, so I will not repeat them here.
Um, we want to hear from you in the audience.
So you're invited to access the poll for this particular session, uh, by scanning the QR code in the screen or going to menti.com and putting the code 55353553555.
Um, please limit your statements to two minutes.
We have many speakers today, and we want to have time to listen to them all.
Um, please send also your statements to e statements at un org with the name of your organization.
So let's move on to the speakers.
I will introduce three at a time so that you have an opportunity to get ready.
Uh, the first speaker is African Federation of the Deaf Blind.
Then comes Deaf People Association from Malta, and then Action on Disability and Development Aid International.
So please, African Federation of the deaf blind.
The floor is yours.
Sorry.
African Association of the deaf blind.
Not in the room I think.
Let's move on to Deaf People Association, Malta.
Please go ahead.
My name is Annabel Sherry and I'm the president of the Deaf People Association, Malta, as well as the chairperson of the Maltese Sign Language Council.
This conference today asks a very important question.
How can we move from simple participation towards full leadership? However, to answer this question, we first need to find how we find our voices.
I grew up without access to Maltese sign language and only found this when I was 26 years old before.
Yes, I participated but I was always isolated with this language I found myself, I found my identity and I also found myself at home.
Accessibility changed everything in my life.
This is a simple truth, but it really gave me a voice, new opportunities and as well, leading me to where I am today, a deaf leader.
This is a simple truth.
When a person is given a language and accessibility, it is giving them, giving them also a way to build their own future and their own leadership In Malta we really work hard so no child will have to wait again 26 years to find his or her own voice.
That's why, as Deaf People association, we work hard together.
We fight so that we can make change happen.
And this happened ten years ago in 2016 in Malta.
We are very proud to have Maltese Sign Language as a recognized official language.
Malta is a very small nation, but this shows that even small nations can make big changes, and this model can also work in other countries.
My final message is this.
It's a simple way to look at the future.
Please do not just invite us to sit at your own tables, but help us to build our own tables.
Thank you Thank you very much for reminding us of the opportunity and the importance of finding one's voice in order also to rise as a disability leader.
Um moving on now to action on disability and development at international.
Thank you chair.
Uh, my name is Alfred Smith.
I'm the director of External Engagement with aid International aid is a participatory grant maker.
We support disability justice organizations and activists with funding and leadership skills to build powerful movements for change.
As we celebrate 20 years of the convention and debate the important questions posed for this session, we would like to share reflections from our 40 years experience.
We know there is no justice without disability justice, yet funding for disability is disproportionately low.
Even less of this is available to grassroots organizations led by persons with disabilities.
AD is working to change this.
We want to see resources flow directly to disability justice movements as a result of the work that we and all organizations working in the sector do.
Disability justice activists know best in the face of discrimination and exclusion They come up with innovative and effective ideas to unlock real and lasting change.
AD has deliberately shifted our approach away from the traditional development project model towards inclusive solidarity that heals injustice We believe participatory grantmaking is the answer.
By providing flexible funding, disability justice activists can decide who receives grants and how money is spent.
This approach has led to the creation of the Disability Justice Fund for women, which has so far funded 27 grassroots organizations led by women with disabilities across Tanzania, Uganda and Ghana, and the Disability Justice Fund for youth, a participatory fund designed by a group of young people from Uganda, Cambodia and Bangladesh.
It has also ensured displaced persons with disabilities in Sudan have identified and funded Their own priorities, including food and medical expenses, which they had not been able to access through humanitarian response.
We believe all organizations present should use their position and networks to increase the flow of resources to those who have the vision agency and right to lead.
Disability justice activists.
Thank you.
Thank you very much for reminding us about the importance of trying new ways to to to grant funding.
Participatory participatory grant funding is, uh, is important in that sense.
Uh, I will move on to the three next on the list, International Cerebral Palsy Society, Save the children, Asian Pacific Disability Forum, uh, so first international cerebral palsy society, the floor is yours.
Thank you.
Chair.
My name is John Coughlin from ISPs.
Article 29 recognizes the right of persons with disabilities not only to vote, but to participate fully in political and public life.
Yet many persons with disabilities remain excluded, not because they lack interest or ability, but because systems are designed without them.
Over the past two years, our member organizations in Europe have implemented vote for all EU, bringing together 460 participants from over 20 countries to explore how to make democratic participation more accessible and inclusive.
But this is only the starting point.
The real goal is representation, leadership, and influence.
We saw this most clearly in Portugal, where the CP federation has developed a universally accessible voting system.
It is now working with electoral authorities to turn this pilot into a wider solution.
The lesson is not simply that technology can remove barriers, but that meaningful change can happen when persons with disabilities are involved in designing, testing and evaluating solutions.
This principle applies far beyond voting.
If we want meaningful representation, persons with disabilities must be present wherever decisions are made in parliaments, governments, civil society and community organizations.
Advisory bodies.
International institutions.
We also learned that leadership does not emerge automatically.
It requires investment through vote for all participants became democracy champions.
Equipped with knowledge, confidence networks and practical advocacy skills to influence change in their own countries and communities.
This is particularly important for persons with CP and other complex communication, intellectual or multiple disabilities whose voices are too often absent from political discussions.
Even within the disability movement itself.
To move from inclusion to representation, we therefore need three things.
First, accessible systems that enable participation.
Please wrap up.
With others.
Second, sustained investment in leadership development and advocacy capacity.
And third, a commitment to diversity within our own movement, ensuring that those who face the greatest barriers are not spoken for but are supported to speak for themselves.
Thank you.
Thank you very much for bringing to the table very concrete examples.
Uh, next is Save the Children.
Hi.
I am Amy Farkas Karageorgos with Save the Children, one of the largest leading or largest humanitarian organizations working in 100 countries and reaching 114 million children last year.
We wish to mark the 20th anniversary of the cRPD, not only by recognizing the progress made, but by renewing our commitment to children with disabilities and their families who are still overlooked, invisible and excluded, especially in the most fragile contexts.
We've seen firsthand that when children and caregivers with disabilities are meaningfully included, societies become stronger, more equitable, and more accessible.
Too often, children with disabilities and their caregivers and their representative organizations are included or consulted just in name.
True inclusion requires shifting power, so children with disabilities and their families not only participate, but influence decisions, resources, and accountability.
We must engage the disability community in all its diversity, especially those most excluded.
Girls with disabilities, children with high support needs, refugee status and those living in poverty or in underserved rural areas.
In our programs, girls with disabilities are leading change in Malawi.
The Green and Inclusive Voices Group promotes inclusive climate action, and in Yemen, the group, called Heard Voices, is tackling barriers in education, raising awareness and influencing school and government policies.
Their voices are making a difference, but they have had to fight to be heard.
As we mark this milestone, we urge all partners, including state parties, to ensure children with disabilities and their families are included in decision making, from local action and recovery to national policy decisions.
Thank you.
Aligning the right of children to be heard.
Uh, moving on now to Asian Pacific Disability Forum.
The floor is yours.
Hello.
Hello.
My name is Kiran Lee and I will speak with my co-speaker, who is sitting right next to me.
It is an honor to speak with you here today.
Uh, five days ago, local elections were held across South Korea.
However, candidates with experience in disability rights advocacy accounted for only 0.8% of all candidates.
This reminds us that persons with disability continues to face barriers not only in exercising their rights to vote and but also in exercising the rights to stand for election.
But some polling stations remain inaccessible and voting assistance for voters with developmental disabilities differs by polling stations or staffs.
When the right to vote depends on where a person goes or whom they meet it is a clear violation of political rights.
Second, while mandatory measures exist for women and young candidates, disability representation is still not fully reflected.
Furthermore, candidates with disability also bear additional costs for assistance, transportation and communication support.
Governments, parliaments and political parties must provide barrier free voting, disability inclusive nomination systems and public support for disability related costs to ensure the political representation of persons with disability.
And I'll now pass on to my co-speaker.
Hello colleagues.
My name is Sally.
I'm honored to be here and share my remarks.
I would like to emphasize that the lack of political representation of persons with disability is not only a matter of policy structures, but also begins with cultural structures that exclude young persons with disabilities from public life.
Our children with disabilities are used to be denied opportunities to imagine themselves as leaders and representatives of society.
This absence of opportunity and imagination pushes them to be only receivers, not providers.
It places them at the emergence of public life and ultimately contributes to the lack of political representation that we continue to see today.
Therefore, our societies must create environments where they can see themselves not as beneficiaries, but as change makers.
One good example is global IT Challenge Program, which provides AI and IT education to youth with disabilities and gives them opportunities to represent their countries and compete on the international stage.
Therefore, ladies and gentlemen we must expand programs like this along with civic education spaces for healthy competition so that future with disabilities can stand at the center of society from an early age and achieve political representation.
Thank you so much.
Thank you very much for bringing to the table very concrete examples of solutions.
Again, uh, we move on to the next three speakers on the list The first is International Service for Human Rights.
Then comes large international and then women with Disabilities Australia.
So first international service for Human Rights.
The floor is yours.
In my our language Guarani.
This is how we say hello.
I became a language on purpose because where I come from, we carry our ancestors in our community in every word we say.
And today I bring here mine to you.
My name is Christian Vargas.
I am 20 years old.
I am Guarani from Ética Guasu territory in the Bolivian Chaco a place most maps forget.
And I am also co-founder of your heroes.
Let me tell you something.
I have seen with my own eyes.
In my land, a person with a disability can be born, live and grow old and never once be asked a single question about their own life.
A whole life in silence.
The road never reached them.
The words never came.
Their language.
The door was never built for how they move here or think.
I have stood in the Italians.
And I refuse to call it normal.
Because here is the truth.
This exclusion is not an accident.
It was built.
It is a designed.
And when you're indigenous, disabled, down and far from the capital, the world forgets you again, again and again.
So we stop waiting to.
We remember a lugubrious.
We built something.
We call it hopo.
Our.
Any words That means giving to another.
Think about who writes the laws that rules our life, the budgets, the public decisions.
They are written in language built to keep people out, and the people most affected never get to read them at all.
Hopefully changes that.
It takes those laws and decisions and makes them truly accessible Informants.
A person can actually read, hear and understand.
So a person with a disability can study a real law form their own opinion, and send it straight to the people in power, their voice, their decision here exactly as they meant it.
And this is already real.
In my community, people who were never asked anything are finally being heard.
There is representation when the people who are always talked about finally become the ones who speak.
Participation in democracy is not a privilege to hang out.
It is a right that belongs to everyone equally.
So hear me.
Every person has something to say.
The only question is whether we are willing to listen.
A democracy that does not listen to everyone is not yet a democracy So let us listen.
Let us build and let us do it together.
Thank you.
Thank you very much.
Uh, we're moving on on now to large international.
Hello.
My name is Donald MacLean and I represent large international, a global federation of over 160 communities in 37 countries.
Uh together, we share a vision for a world where every person belongs.
Um, I am a member of large in Belfast in Northern Ireland.
I'm here with my colleague and friend, Scott Shively, executive director of Large Belfast, and other representatives from large.
Today we are here to to communicate about subtheme three participation, leadership and advocacy.
People with different abilities must be supported to share their voices and participate in leadership.
But often advocacy and decision making is not designed to include everyone.
For example, when conversations only use traditional speech or document writing, this can block some people from joining.
Everyone should be able to share their voice and contribute their to conversations and decisions in the world.
Theatre, music and photography and other arts are our ways.
We can include more people.
For example, I love film and I've noticed that over the years, people with with different abilities have been misrepresented or underrepresented.
But we can change this.
The arts are powerful ways to communicate.
Powerful art can change minds and hearts.
For example, Large Belfast created a photography project and shared important messages on purpose.
We, the participants, did not add labels to their photos.
This is one of the messages.
You cannot know a person's identity or their strengths from looking at them from the outside, right? Thank you very much, and thank you also for underlining the power of art.
Uh, and now we move on to women with disabilities.
Australia.
The floor is yours.
To live.
An ordinary life should not be viewed as a radical proposition Social and community participation supports are the baseline of what we need to engage in our communities.
You cannot be a leader in your community if you do not understand what your community needs and how it works.
I could not be a good spokesperson for the Access and Inclusion Committee where I live.
If I was not present or engaged in that local area.
The sponsor received support.
Workers therapy and equipment are essential for me to take part in that community.
Often, the supports disabled women use to access their communities are portrayed as an economic burden This can make us feel as though we need to shrink our ambitions and diminish our enjoyment of life.
But when those supports are.
Value is an investment that can unlock participation, leadership and representation opportunities.
The opportunity I have to speak here at the UN is proof that leadership and representation for young people can work, but opportunities alone are not enough.
We also need support to allow us to take them up.
I am here because I have the support of my family and I work in a disability positive workplace.
Back home, I have the proper equipment, housing and therapists to give me the ability to have multiple roles in disability and youth advocacy in Australia.
While my advocacy is important to me, it is equally as valuable to have a rich and engaging social life as this makes me multifaceted.
This is important because representation in civic life requires disabled people to be fully present.
Thank you.
Thank you very much.
And, uh, thank you for underlining the importance of support system in order to be able to engage in, in advocacy.
Um, now we move on to the three next speakers on the list.
Uh, those are, uh, NGO project Projeto Philippines from the Philippines, Samoa Deaf Association and step special talent exchange program So NGO Projeto Philippines, uh the floor is yours.
Thank you.
Chair, I'm Carol and I'm the head of the International office of Proyecto Philippe de Italy.
For over 20 years, Proyecto Filipinas promotes support activities for people with autism, with particular attention to people with high support needs in the cognitive and communication areas, ensuring representation and self-determination for people with autism who do not use verbal language or who communicate in different ways, is one of today's major challenges.
Too often, the possibility of having a voice is associated with the ability to speak, but a person who does not speak is not a person without a voice.
For this reason, it is essential to create context in which every form of expression can be recognized and valued.
From this perspective, Spa represents a particularly meaningful opportunity.
Through sport activities, a person can express determination, belonging and competence for productive lipid.
Therefore, party is not only a means of psychophysical well-being, it is social inclusion, personal growth, and self-determination.
This vision is consistent with article 30 of the cRPD, which recognizes the right of persons with disability to participate in sporting activity on an equal basis with others.
Through its approach and working methods productively, PD aims to create contexts that promote representation and inclusion.
This commitment also extends beyond Italy.
In Albania, for the past three years, the program has involved a growing number of people with autism.
We have also participated in action in the Caribbean countries with Undesa and we are working to allow similar experiences in Tunisia and Cuba.
An important symbol of this vision is the ramp for autism of.
Product of an inclusive race that takes place every year in Rome.
On that day people with autism, families, athletes and community members share the same root.
It is not only a sport event, but a public space for participation, visibility and recognition.
In conclusion, promoting access to sport means transforming a state right into a lived right, because every sporting achievement can also become an achievement of dignity, belonging and human rights.
Thank you.
For.
Reminding us of article 30 and the right to participate in sporting activities.
Uh, we will move on now to Samoa Deaf Association.
The floor is yours Samoa Deaf Association, are you in the room? Seems not.
So.
We will move on to step special talent exchange program.
The floor is yours.
It seems that we do not have step here either.
So we will move on to the next three on the list.
First is World Institute on Disability.
Then comes the leprosy mission and children and young people with Disability Australia.
So World Institute on Disability.
The floor is yours.
Good afternoon.
I'm Marcy Roth, CEO of the World Institute on Disability.
We've been disability disability led since we were founded in 1983, 20 years after the adoption of the cRPD, disabled people are more visible than ever.
We are participating.
We are consulted We are invited to panels, forums and advisory groups.
And yet, too often decisions are still being made without us.
That is the difference between participation and representation.
Participation means being in the room.
Representation means having the power to influence what happens in the room.
For decades, the disability community has fought for a seat at the table.
But if we're honest, many of the world's most consequential decisions are still being made at tables where disability is absent or where our presence is symbolic rather than substantive.
The G20 is one of those places the G20 shapes global priorities on economic growth, employment, technology, artificial intelligence, climate resilience, disaster preparedness, health and development.
These decisions affect the lives of 1.3 billion people around the world, people with disabilities and every community across the globe.
Yet disability is rarely treated as a strategic priority.
The disability 20, or D20 exists to change that.
The D20 brings together disability leaders from across the G20 countries to move disability from the margins of global policy discussions to the center, not as beneficiaries, not as a special interest group, as leaders, experts, innovators, workers, entrepreneurs, voters, taxpayers and community builders.
Throughout the 2026 G20 disability leaders in the U.S.
are working together with a growing global d20.
Thanks to the leadership of the Brazilian 2024 D20 and the 2025 South African D20, to advance priorities that matter to all of us.
This is all about power.
The next 20 years of the disability rights movement cannot be defined by access alone.
Join the disability 20 the d20 and influence the G20 along with us.
Nothing without us ever again.
Thank you.
Thank you very much and thank you so much for bringing to the table the D20 initiative.
Very important.
Um, we are moving on now to the leprosy mission.
The floor is yours.
Thank you.
How does an international NGO working with individuals on the margins of some of the poorest societies on the planet, ensure their participation and representation.
That is exactly what we do at the leprosy mission.
And we have to recognize that we cannot ask for representation for persons affected by leprosy within broader public and political life.
If we're not leading by example, it is only in recent years that we have really begun a push towards meaningful participation and representation.
We moved from a mindset of persons affected by leprosy, being only patient towards a vision of them as rights holders.
Changing that mindset within a global organization is difficult and is even more difficult.
When you tell a senior leaders that we need to open up significant new budget lines to ensure that persons affected by leprosy are in a position to have their say within the organization, and even to hold us accountable.
Thankfully, many in our organization have understood intrinsically why this is essential if we want to design projects alongside persons affected by leprosy, or have our organizational strategies influenced by the people those strategies are written for, then we need to hear not only from the most accessible people We have to invest time and money to go to the communities, no matter how rural.
We need to break down complex ideas so that everyone is capable of providing input.
We need to cross over language barriers, even if that means extra costs.
We can ensure the diverse voices are represented and heard.
If we invest the money it takes to really listen, that means staff who take the time to do this.
It means travel costs and translator costs.
It means consultancy fees and per diems for persons affected, it means staff time invested in making dialogues accessible to everyone.
It means a willingness to change based on the feedback we receive, even if it means more financial investment.
NGOs have a responsibility to ensure representation starts with us, but that should not be a box ticking exercise.
Don't do it the easiest way possible.
Do it in a way that ensures you hear representative voices, even if the costs make you uncomfortable, and even if the voices you hear say things that make feel uncomfortable.
Thank you.
Thank you very much for sharing on the process of changing the mindset of of a big organization.
Uh, moving on now to children and young people with Disability Australia.
Thank you chair.
My name is Rosie Putland and I'm a proudly disabled young person and the community engagement coordinator at Children and Young People with Disability Australia.
I want to speak today about a new barrier to civic participation that many countries may soon face.
Six months ago, Australia introduced a social media minimum age law.
The law requires social media companies to prevent children under 16 from accessing certain social media platforms.
To do this, many platforms have introduced age assurance systems that require users to prove their age or identity.
The policy was framed as a child safety measure, but for many disabled young people, it creates a burden of proof for belonging in public life for children and young people with disabilities.
Social media is not just entertainment, it is where we engage with politics, learn about our rights, connect with disability communities, find representation and access vital health information for many young people who are disabled, queer, immunocompromised, living in regional areas, these platforms are often the most or only accessible public spaces available to us.
The challenge is that age assurance systems are often built on the assumption that everyone can easily prove who they are.
Many cannot oblige.
Young person may not be able to complete a video selfie verification process.
A young person with a facial difference may not be recognised by the system.
A young person without a driver's license or passport might may find that the identification they do have is not accepted.
Our research, conducted six months after the restrictions came into effect, found that 95% of disabled children under 16 still had access to social media.
At the same time, disabled young people over 16 who were legally entitled to access these platforms were being locked out.
Half of disabled young people aged 16 to 25 reported being required to verify their age or identity Of those, 76% experienced accessibility barriers during verification.
Almost one quarter were unable to access social media despite being old enough to legally use it.
The restrictions appear to have created new barriers for disabled young people who have the right to participate, while doing little to prevent access for those who were intended, it was intended to restrict.
As countries consider similar policies, I encourage you to tell governments to focus less on restricting access.
Please move to rapping on creating safer platforms if we are serious about representation, leadership and civic engagement we cannot continue building, building digital public spaces that disabled young people must fight to enter.
Thank you.
Thank you very much for bringing to the table these dilemmas related to regulating social media.
Uh, the next three on the on the list are Athletes United for peace, Disabled People's Internet, People's International, Korea, uh, Down Syndrome or Australia and act down syndrome and intellectual disability.
So first, now our athletes United for peace.
The floor is yours.
Thank you.
No.
Oh, yeah.
Thank you so much.
My name is Jordan and I'm a disability and civil rights policy advocate representing United Athletes for peace.
Generally, this convention was called to convene state parties and civil societies to identify and solve problems that harm individuals with disabilities.
Ultimately, I believe one of these such problems is the inability for people with disabilities to engage their government.
We are here to cultivate a society that includes people with disabilities, and right now, people with disabilities oftentimes don't even know what's going on in their government.
State parties should adopt policies that include ASL interpreters or closed captioning services in government meetings to facilitate accessibility for people that are deaf or hard of hearing.
State parties should adopt policies that ensure venues of government meetings are accessible to people, regardless of ability and regardless of mobility disability.
Additionally, we need to ensure that communications, documents and all materials communicated by governments are accessible to people that are visually impaired and are screen reader accessible.
Moreover, as civil society, we must take active steps to ensure that governments across the world are accessible and include people with disabilities.
If people disabilities do not know what's going on, they cannot engage, they cannot be represented.
And although these steps might sound minor, might sound insignificant, they are essential to cultivating a society or.
People with disabilities are not only seen but are heard in their government.
Thank you.
Thank you very much.
And now, moving on to disabled people's international career.
The floor is yours.
Thank you.
Chair.
I am speaking on behalf of disabled people.
International career.
DPR Korea.
20 years ago the cRPD recognized the persons with disabilities not as objects of charity but as holders of rights.
Today I would like to ask one simple question.
A person with a disability truly represented.
For many years, DPI Korea has worked under the principle of nothing about us without us, and our experience has taught us one important lesson participation alone is not enough.
In many countries, PWDs are consulted, but too often decisions have already been made.
This is not representation, and this is not what cRPD promised.
To address this gap, DPI Korea has promoted disability lead monitoring.
We have also shared what we have learned through cRPD and SDG based training across the Asia Pacific region.
Today I would like to make three calls.
First, organization of PWD must be recognized as equal partners in decision making.
Second, disability lead monitoring must receive stronger support.
Third uh underrepresented voices, including women with disabilities, intellectual and developmental disabilities, and psychosocial disabilities must be fully included in leadership and decision making processes.
The future of representation will not be built by one organization or one country alone.
It will be built through solidarity.
Nothing about us without us is not simply a slogan.
It is a demand for representation.
It is a demand for accountability.
And it is a demand for justice.
Thank you.
Thank you very much.
Uh, now over to Down Syndrome Australia and act down syndrome and intellectual disability.
The floor is yours.
My name is Charlotte Bailey and he representing Down Syndrome Australia.
I want to talk about how people with intellectual disability can be included in the community, and how we can be empowered to be advocates and shape the work our government and community does.
Four years ago, I addressed the United Nations Online for World Syndrome Day.
I spoke about my vision for more inclusive Australia, where there would be more employment opportunities for people with intellectual disability and how they should earn a full wage, just like everyone else.
Now here I am four years later, and I'm still fighting for the rights of people with intellectual disability.
Article 27 of the CRP day that tells us that people with disability have the right to work, just like everyone else.
But in Australia, sometimes employers think it's too hard to employ someone with intellectual disability.
I believe everyone should have the opportunity to work and earn enough money to support themselves.
I am paid a full award wage, which means I am paid the same as everyone else in Australian workplaces.
People with intellectual disability sometimes get paid much less than people without disability.
If they are doing the same job as someone without disability, this is not fair.
I am here to tell everyone, especially anyone listening from the Australian government, that the CRPD says people with disability have the right to work on an equal basis with others and have access to reasonable and necessary adjustments to help them to do good job.
I want everyone here today to know that I will keep fighting for the rights of people with intellectual disability, and I want to see more inclusive workplaces.
Thank you.
Thank you very much, and thank you for drawing our attention to the right to work in article 37 of the cRPD.
Uh, the next three on the list are Instituto VNDI Korean Disability Forum and National Centre for Promotion of Employment for Disabled People.
So first Instituto VNDI.
The floor is yours.
Thank you.
Moderator.
I speak for Tutu van de Vidas negras.
Com deficiencia importam.
Which means black disabled lives matter.
We are a Brazilian civil society organization.
Work for the rights of the black persons with disabilities.
This year we marked 20 years of the cRPD.
There is a real progress to celebrate the convention.
Change how the world sees disability for the medical model to human rights model.
It changed laws and policies everywhere.
But after 20 years we must also ask a higher question whose voices are shaping? What comes next? For too long, progress has been measured by one thing a person with disabilities presenting this wrong.
Being present matters.
But being present is not the same as leading.
For too long.
Uh.
So such a real question is how do we move from inclusion to real leadership? For us, this is not just an idea for our Flavia Genesis School.
Then the.
It has trained more than 150 black leaders with disability across Brazil, seven of them from every region of our country, including indigenous and Quilombola leaders.
We are in Berlin during the Global Disability Summit 2025.
This is about building leadership really means not choosing one person to fill a seat, but a forming generation that can speak for itself in its own way where decisions are made.
I also want to say something to international donors and partner organisations in Brazil Social movements have always worked to protect people and reduce harm, often long before the state ever noticed the problem.
The capacity is already here.
What is missing is trust and funding to support it.
So we do not need new extra tourists built in our name.
We know long term, we need long term, flexible funding for advocacy that lead locally.
We need real partnerships, but they don't.
Listening in, not on giving instructions.
And we need space to set our priorities.
It should be easier to connect, to learn and to build.
It is following the right place to begin to work together.
If you are organizing charities concern, we always glad to talk.
Thank you.
Thank you very much.
And thank you also for bringing to our attention the importance of flexible funding from from donors.
The next is Korean Disability Forum.
The floor is yours.
Thank you.
Good afternoon.
My name is Helen Jung from the Korean Disability Forum.
20 years after the adoption of the.
The Uncrpd.
Many persons with disabilities across the Asian Pacific region still face barriers to living independently in the community and participating in decision making.
At the same time, there are significant differences between countries in laws, policies, and available resources.
In this context, international solidarity is not simply cooperation.
It's an important tool for expanding and expanding the participation and representation of persons with disabilities.
Korean Disability Forum is a member of the Asian Pacific Coalition.
On the institutionalization a PDI.
Although we mainly meet online, we have already made meaningful progress.
We have shared experiences on the on a wide range of issues, including personal assistance service in Nepal, uh, advocacy, organized institutionalization in Bangladesh, and responses to the rollback of the institutionalization policies in South Korea.
Through these efforts, we have seen the power of solidarity.
A PDI is working to transform national issues into shared regional priorities By doing so.
By doing so, we aimed to strengthen regional monitoring, monitoring, and accountability for the implementation of the cRPD.
Uh.
As we mark the 20th anniversary of the cRPD, participation must be more than simply attending meetings.
Please move to.
wrapping up.
It must read to representation, leadership and real influence over policies and decisions.
For this reason, I invite all of you to continue working together and strengthening, uh, solid solidarity across the region.
Thank you.
Thank you very much for sharing those very important, uh, experiences related to deinstitutionalization and the power of, of solidarity.
Uh, moving on now to National Center for Promotion of Employment for Disabled People.
The floor is yours.
Um, National center for Promotion of employment for disabled people.
Not in the room.
Okay.
Then we move on to the next group of three on the list.
Uh, they are global network of refugees with disabilities, Thailand Association of the blind, and the International Movement of Youth with disabilities.
So starting off then with global network of refugees with disabilities.
Please go ahead.
Global network of refugees with disabilities don't seem to be in the room.
So then the next speaker is Thailand Association of the blind.
Please go ahead.
Hello.
Distinguished colleagues ladies and gentlemen.
Arrived to assist is not same as a right to a voice.
Thailand has made commendable progress in advancing the participation of persons with disabilities in public and political life since ratifying the cRPD.
Our nation has recognized that participant is not privileged granted granted by the state, but our fundamental rights protected by law and a core responsibility that the state must fulfill.
Thailand law guarantees access for persons with disabilities and our representative organizations to engage in policy making mechanism at every level.
These spaces are firmly grounded in bedrock principle of the cRPD.
Nothing about us without us.
This mechanism has undeniably strengthened disability leadership in Thailand.
They have enabled us to engage with government institutions, share policy discussion and fiercely advocate and the rights and needs of our communities.
Yet meaningful participation cannot measure by presence alone.
Thailand's pressing challenge to the shift from mere participation to true representation.
Persons with disability may hold more seats in policy spaces than ever before, but all too often, our voices remain marginalized when final decisions are made.
Representation must transcend symbolic inclusion.
It must be influenced in mainstream politics.
While we possess the legal rights to stand for election and hold public office legal recognition alone is insufficient.
Deep seated social attitudes, inaccessible political environment, limited resources and systemic barriers continue to restrict meaningful political participation.
To bridge the gap between rights on paper and power in practice.
Please move on to wrapping.
Up essential, uh, priority first empowerment.
Strengthen the leadership and capacity of persons with disability.
Second enablement creating accessible system, institutional and environment where participant participation becomes generally possible.
Third, effective representation ensuring that the person with disability who meaningful influential roles in decision making for persons with disability.
In Thailand, meaningful participation means more than simply having a seat at the table.
It means having a voice that is heard, respected, and reflected in the decisions that shape our lives, our rights, and our shared future.
Thank you.
Thank you very much.
Moving on to the International Movement of Youth with disabilities.
Hi, I'm Jaco Aguilar from Mexico, from the International Movement with disabilities and the International Movement of Youth with disabilities.
We work to create spaces where young people with disabilities can connect, organize, and also influence decision making and advocate for the rights of young persons with disabilities To represent ourselves, to speak for our own experience, priorities and also creativity.
As we share this day.
The disability community is not an homogeneous group.
We experienced exclusion and participation and a lack of participation.
The different way there are shaped by gender, socioeconomic status, geography race, and of course, age.
We need to address social barriers that maintain the adultism the structural barriers such as inequal access of funding, limited opportunities for leadership because two of the young people with disabilities are invited to participate, but not supported to lead or influence decisions.
We need to move beyond presence and towards to sharing power, as we know.
We we need to ask who is in the room, but it's better to ask who is shaping the decisions.
And I invite you ask these questions for your organization.
Who is shaping.
Who is shaping the decision decisions? Are you involved in these decisions? So we need to boost youth participation.
But when we're talking about boosting youth participation inside other organizations is not enough movement in the in the political life.
We are not talking about we're not talking about one generation replacing another.
Please move on to, to wrapping up.
Yeah.
It's, um, it's about generation working together because, uh, we must build in shared leadership where different perspectives are valued equally and contribute to strengthening perspectives to face discrimination and exclusion.
Youth participation is not just about being present.
It's about having the power to influence, lead.
And believe me, you have the power to transform the systems that affect our lives.
Thank you.
Thank you very much.
Uh, the next three on the list are United Nations Association of Australia, Taiwan, Mad Alliance Nightingale initiative for Global Health.
So first then United Nations Association of Australia.
Please go ahead.
Chair, chair, colleagues and friends, thank you for the opportunity to speak today as we mark 20 years of the convention on the Rights of People with disabilities.
I want to start with a simple question.
Why do we still have to fight to be heard? Every time a decision is made about our lives? Too often we talk about inclusion as a goal, but inclusion on its own is not enough.
Being invited into a room is not the same as having influence.
Being consulted is not the same as being listened to, and being present is not the same as having power.
We are not asking to create new commitments.
We need governments to deliver on the commitments already made.
If we want to move towards meaningful representation and leadership, we need to stop asking how people with disability can fit into existing systems, existing systems, and ask about systems that share power with people with disabilities already.
That means people with disability helping shape policies, sitting on boards, leading organizations influencing funding decisions, and holding governments and services accountable.
Not because it looks good, because our expertise, lived experience, and leadership matters.
Leadership pathways are also critical.
People do not wake up one day and suddenly become leaders.
Leadership starts much earlier.
It starts with self-advocacy.
It starts when people understand their rights, have access to information, and can speak up about decisions that affect them and have opportunities to participate in the communities it grows through mentoring, peer support and opportunities to learn from one another.
If we want if we want stronger disability leadership tomorrow, we need.
To move on to.
Wrapping up advocacy and advocacy pathways today.
I know that many people with of our mob with disability continue to face barriers of leadership and decision making.
People with intersecting identities continue to experience some of the most highest rates of violence and discrimination, and people with intellectual disability are still often not spoken to or listened to.
And finally, for funders and partners, my message is simple invest in disability led organisations, leadership opportunities, self-advocacy and organisational capacity.
Trust us to identify our own priorities and move beyond short term projects, towards long term investments, towards strong disability movements.
Because strong disability movements create disability leaders and strong disability leaders.
Please move on to wrapping up change.
Thank you very much.
We need help building this change and not just being asked to participate just for the sake of it.
Thank you.
Thank you very much for providing those very clear recommendations.
Moving on now to Taiwan Alliance.
Uh, I'm delivering this statement on behalf of Mr.
Wang Xiao Wu and the Taiwan Alliance the first representative organization in Taiwan formed and led by persons with psychosocial disabilities since losing its seat at the United Nations in 1971, Taiwan has been unable to participate in the UN treaty system as a state Taiwan cannot become a state party to the cRPD, cannot undergo formal committee review and cannot join the optional protocols.
As a result, persons with disabilities in Taiwan cannot access international cRPD complaint mechanism even when domestic remedies have been exhausted.
Yet Taiwan has not stood apart from the cRPD.
In 2014, Taiwan incorporated the convention into domestic law and established a review mechanism modeled on the UN treaty body system.
This has created an alternative space of accountability for persons with disabilities to claim their rights.
During the Covid 19 pandemic, many psychiatric words prohibited in patients from using smartphones while restricting in-person visits.
Many people were placed in a state of isolation.
These restrictions affected not only communications with family and community, but also people ability to document abuse, seek support, file complaints and actually access legal assistance.
During Taiwan's second domestic cRPD review in 2022, Taiwan Met Alliance raised this issue through civil society reporting.
International review experts recommended that communication restrictions should be permitted only when necessary to prevent serious and imminent harm.
When have been treated as routine institutional practice.
Please move on to wrapping up human rights issue.
Taiwan experience demonstrates that issue.
Often framed as a hospital management or welfare administration, are fake questions of liberty, communication, independent living and participation in the community.
Lastly, although Taiwan stands at the margin of the international relations, just as persons with disabilities have long been placed at the margin of ableist system, marginal positions can reveal realities that center cannot see.
Those perspectives can challenge ableism, challenge the biomedical model of disability, and strengthen accountability under the cRPD.
Thank you.
Thank you very much.
Uh, we will only have, uh, time for two more speakers.
So the next on the list is Nightingale Initiative for Global Health.
And then the last will be Africa Rehabilitation and Research Consultants.
So please Nightingale Nightingale initiative for Global Health.
The floor is yours.
Good afternoon.
My name is Yasmin Atwal and I am a disability advocate from Toronto, Canada, founder of the National Accessible Schools Initiative, the National Disability Advisory Council, and creator of the National Disability Inclusion Toolkit.
Today, I am honored to be representing the Nightingale Initiative for Global Health alongside so many leaders, advocates and representatives from around the world.
My journey into Disability advocacy began long before I understood words like policy or inclusion.
It began with the people closest to me.
Growing up, I saw family members with disabilities navigate, navigate systems that often expected them to adapt rather than adapting to them.
Those experiences led me to a realization that has shaped every aspect of my work.
Many of the barriers faced by persons with disabilities are not created by the disability itself.
They are created by decisions, decisions about whose perspectives are considered, whose expertise is recognized, and whose voices are included when important choices are being made.
Last year, I developed the National Disability Inclusion Toolkit, an 81 page resource designed to help schools create more accessible and inclusive environments through consultations with persons with disabilities, advocacy organizations, educators, legal professionals, and community leaders.
I expected to learn primarily about accommodations and accessibility practices.
I'm sorry.
Instead, I found myself thinking about a much larger question how do we move beyond inclusion and towards meaningful representation? Because access is important.
But the ultimate goal is not simply to ensure that persons with disabilities can enter systems.
It's to ensure that they can help shape them.
Too often, persons with disabilities are invited into conversations only after key decisions have already been made.
Their lived experience is recognized, but their expertise is not always valued to the same extent they are consulted, but not always given meaningful opportunities to influence outcomes.
This is why participation alone is not enough.
Meaningful inclusion requires leadership.
If we want truly inclusive societies, we must invest in leadership pathways for persons with disabilities.
Move to wrapping.
Up at an early age.
Young persons with disabilities should have opportunities to serve on student governments, advisory councils, boards, advocacy organizations and other decision making bodies.
Leadership development, mentorship and advocacy training should not be exceptional opportunities.
They should be expected opportunities.
The disability rights movement has long been guided by a powerful principle.
Nothing without nothing about us, without us.
As we continue advancing the implementation of the convention on the Rights of Persons with disabilities, I encourage all of us to think beyond accessibility alone and towards participation, representation and leadership.
Let us measure progress not only by presence, but by influence, and not only by inclusion, but by empowerment.
Because accessibility.
Please move to wrapping up.
Representation strengthens, strengthens participation, and leadership drives change.
Thank you.
Thank you very much.
So then, uh, so then we're moving on to Africa Rehabilitation and Research Consultants.
The floor is yours.
It seems like they are not in the room.
So, uh, we will finalize now as we are a bit over time, and we'll move into the closing session.
So thank you so much to all of the speakers for your valuable inputs.
On this one already.
Okay.
Winning.
Good evening everyone.
Can you hear me? It's the last segment of the day.
Thank you so much for your patience.
I would like to invite the other three moderators to join us on this stage.
As they take their seats.
I would like to introduce myself.
My name is Miriam Dengue.
I represent the International Disability Alliance.
I'm going to moderate this closing session.
And for this closing session we are going to hear summary from our four moderators.
We've heard from 94 speakers since morning, and we would like to hear from our moderators.
What were the key takeaways from each session? It is my pleasure to invite each of them in order to provide a three minute summary of the session they moderated.
First is Santosh.
Santosh, you have the floor for three minutes, please.
Thank you.
To the.
Hold on.
We're going to give you a handout.
Okay.
There you go.
Uh.
Thank you.
Uh, madam moderator.
Uh.
Three minutes.
Summary of a very detailed discussion.
Let me try.
While.
We all highlighted the progress made as a result of the adoption of convention during 20 years of journey of implementation, in the sense that there is a visible policy shift from welfare to right based approach Many concerns were raised by diverse disability groups.
Some of them include.
The issues of accessibility in education, employment and basic services.
Accessing basic services for deaf.
Issue of non-recognition or mandatory recognition of sign language interpretation.
For persons with intellectual disabilities, non-recognition of their legal capacity and personhood.
Institutionalization were the issues which were highlighted.
Diverse groups such as women and girls with disabilities, refugees with disabilities.
Their non-inclusion was also highlighted.
The.
The discussion highlighted that diversity has not been respected and therefore we still face exclusion and discrimination for way forward.
Internet.
The need for strengthening international cooperation was scored, highlighted.
It was also highlighted that we need to find ways to neutralize the impact of austerity measures, both in terms of the Dpos engagement at UN level.
We also highlight got the concerns raised about the manner in which cRPD committee has not been given proper resources, and there was a strong call for solidarity amongst ourselves, respecting diversity for all disability groups.
Thank you very much.
Thank you, thank you.
Santosh.
Um, we're really hearing from you.
Is that 20 years since the adoption of the therapy D, we still have unfinished business.
We are celebrating the human rights based approach, but we also have unfinished business which include issues related to legal capacity, community inclusion, investment in disability inclusion, and investments in accountability mechanisms, specifically resources to the therapy committee.
I'll hand over to the next moderator, Moshe.
Thank you.
So the session made clear that violence, abuse and exploitation against persons with disabilities remains widespread, systemic, and deeply rooted in discrimination exclusion and unequal power relations.
Throughout the discussion, speakers highlighted a wide range of violations, including domestic and gender based violence, sexual violence, forced sterilization, neglect and abandonment, exploitation and abuse, solitary confinement and detention, institutionalization forced treatment, including electroshock and chemical restraints, deprivation of liberty based on disability, attacks against persons with albinism.
Violence against indigenous women with disabilities, abuse in health care, education, justice and community settings, and violence experienced by refugees and displaced persons with disabilities.
Participants also emphasized that violence is not limited to physical harm It includes coercion and denial of legal capacity, exclusion from services and decision making, discriminatory laws and policies, hate based violence and broader denial of rights, autonomy and human dignity.
Emerging challenges related to digital technologies, online abuse, artificial intelligence, climate change, forced displacement and humanitarian crisis were also raised as growing areas of concern.
Speakers called for stronger safeguards based on free and informed consent, greater investment in community based and peer led supports, disability inclusive services and humanitarian responses.
Improved data collection and accountability.
Adequately funded national action plans, survivor centered reporting and support mechanisms, and the meaningful participation of persons with disabilities in design, implementation and monitoring of policies and services.
Uh, also, we, we also conducted a short poll during the session.
So the results highlighted three key messages that AI and algorithmic algorithmic bias emerged as a major concern, pointing to the need for stronger safeguards for the rights of persons with disabilities in the digital sphere.
Second, most participants considered current protection against violence to be inadequate, highlighting the need for stronger implementation, accountability and accessible reporting mechanisms.
And the third, open responses repeatedly emphasized the importance of full cRPD implementation, particularly the institutionalization, legal capacity, and community based support.
So these findings closely reinforce the themes raised through today's discussion.
That's all.
Thank you.
Thank you.
Thank you so much, Moshe.
Um, two takeaways.
One, that we are far away from addressing exploitation, abuse and violence against persons with disabilities.
And the second one, we need to pay attention to technology, to technology facilitated violence and address it as a way forward of the next decade of the convention on the Rights of Persons with disabilities.
I'll now hand over to the third moderator.
Nadia, please.
Two minutes.
Okay.
Thank you very much.
So, Keren support system must be built on a human rights foundation that respect the dignity, autonomy, and the choice of both those who receive support and those who provide it.
This system should promote independency, full participation and inclusion in the community life, while ensuring that all persons with disabilities, including those with high support needs, have access to the assistance they require.
This includes personal assistance, assistive technology, accessible transport and inclusive health care based on informed consent and accessible information.
We must also address the structural barriers that perpetuate dependence, including substitute decision making regimes that that denial legal capacity and internalization that limits the right to independent living and the community.
Access of support needs.
Needs must shift from paternalistic approach to one that empowers persons with disability to determine the support they need, and who should provide it.
At the same time, care and support systems must advance equality and inclusion across all areas of society.
They should promote gender equality, ensuring that mothers of children with disabilities and other family members are not forced out of education, employment or public life because adequate support is unavailable.
An intersectional approach is essential recognizing and responding to the experiences of women with disability, gender, diverse person, indigenous persons and persons affected with conflict, humanitarian crisis and other forms of marginalization or segregation.
Investing most importantly, persons with disability must be at the center of the design, implementation and monitoring of all care and support policies and systems around the world.
Innovative disability and inclusive models already exist and are being led by persons with disabilities themselves.
Our task now is to learn from these examples, invest in them and scale them up so that ride based, inclusive care and support become reality for all.
Thank you.
Thank you.
Thank you so much, Nadia.
Um, the two key takeaways.
Care and support systems should promote independence, autonomy, and full participation in the society.
And the second takeaway is that persons with disabilities and organizations of persons with disabilities should be at the center of designing, implementing, monitoring and evaluation of disability inclusive care and support systems, programs, policies, and legislative framework.
I'll now hand over to the final moderator.
Mariette, over to you.
It's working.
Yeah.
Thank you very much.
Uh, I think that a very clear theme across the interventions was the need to move beyond participation towards genuine leadership and decision making power for persons with disabilities and the organizations, organisations representing persons with disabilities.
Many speakers emphasized that being present or consulted is not the same as influencing outcomes.
Participants called for greater representation of persons with disabilities in governments, advisory bodies, organizations and public life, while ensuring leadership opportunities are available to diverse groups.
Reminding of us of the importance of intersectionality Uh, so that would include children and youth, indigenous persons, black disabled persons persons with psychosocial disabilities, and autistic persons who do not use speech and accessibility was also identified as the Foundation for inclusion, leadership and representation, including accessible communication information, voting processes and public services.
Speakers also highlighted the need to address structural barriers such as poverty, discrimination exclusion and inaccessible systems.
There were repeated calls for greater investment in disability led organizations, empowerment of disability leaders and flexible funding, mentorship and leadership development.
Overall, participants stressed that 20 years after the cRPD, the priority is shifting power so that persons with disabilities are not only included but are leading the decisions that affect their lives.
Thank you very much.
Thank you.
Thank you so much, Marie.
And what a way to close the session for us.
Um from the aspect of consultation does not equal to representation.
Representation requires influence and the opinions being heard and being taken into consideration.
And we hope that today's platform has allowed you to air your opinions.
And we hope they'll be taken up and implemented by the different stakeholders.
And with all that summary, this marks the end of the closing.
Uh, this marks the end of the Civil society forum.
I want to take this opportunity to thank each and everyone of you who has stayed till the end of the session.
I would also like to take this opportunity to thank our service providers, the interpreters, the international sign language interpreters, the language interpreters, the Captioners.
Thank you so much.
Have a lovely week ahead and good luck as you continue to engage in different sessions.