CRPD at 20: Are we any closer to Independent Living for All? (COSP19 Side Event)

Okay.
Welcome everybody.
My name is Nadia Harat and I will start with some accessibility features.
We have international sign language.
Yes.
We have closed caption in English, and we have live streaming on the UN webTV.
I'm one of the co chairs of the European Network on Independent Living and I welcome you all to this side event about the CRPD and the 20th anniversary of it.
Are we any closer to independent living for all? Article 19 of the UN Convention is the most challenging article in it.
It's very innovative, is giving the right to every person with a disability, regardless of the type of disability has or the support need to live independently, including in the community.
It must be with a holistic approach over all sectors and taking intersectionality also into consideration.
So I'm very happy to have very high panelists with me today.
So we have our first openings panel with welcome remarks from His Excellency Bar Wolf.
He's the Deputy permanent Representative of Belgium to the United Nations in New York, a position that he has held since August 2025.
With nearly two decades of diplomatic experience, he began his career working at the United Nations budget issues before serving in key positions in Burundi, South Africa, Belgium's permanent representative to the European Union, and the Belgium Ministry of Foreign Affairs in Brussels.
Without further ado, the floor is yours, please.
Thank you very much.
Thank you for inviting me to this event.
Dear colleagues, dear friends, it is my pleasure to welcome you, everybody here in the room, but also those joining online to the side event dedicated to the 20th anniversary of the UN Convention on the Rights of Persons with Disabilities.
For Belgium, the promotion and protection of human rights is and remains one of the fundamental pillars of our foreign policy.
And this, for us, means the promotion and protection of all human rights for all and everywhere in the world.
In times when we are witnessing pushback against the values of equality and inclusion and the UN system is put under pressure, it is essential to keep human rights at the center of our actions.
This 20th anniversary offers a unique opportunity to consider the progress, changes, and concrete steps we have collectively taken to create a more inclusive and accessible world.
In Belgium, the convention is truly the cornerstone of our disability policies.
Its principles, provisions, and the committee's recommendations shape our regulatory framework.
In accordance with the Convention, especially its Article 19, we want to offer a support that is tailored to existing needs and that is designed to improve autonomy.
We want to move from care to support and to enable people with disabilities to make their own choices.
While there are still practical steps needed to fully implement these objectives, our commitments to get there is clear.
Allow me to quickly go over a few examples of how we translate this goal at country level.
First of all, we strive to transform existing care and housing structures into inclusive, small scale or community oriented models.
We do this through the expansion of home care services, targeted housing adaptations, and social housing measures that promote independent living.
We also work to strengthen financial resources for personal support aimed at enhancing autonomy and independence, a topic miss Haddat will elaborate on during this side event.
We to limit involuntary admissions and further embed human rights and humane care, we also revised our legislation about crisis situations and detention.
The new legislation now emphasizes voluntary, proportionate, and alternative solutions, keeping the needs of the persons concerned and their environment central to every decision.
As a last example, mobile crisis teams specialized in mental health have been established.
These mental health professionals will soon be able to assist police and emergency services across the country when responding to persons in psychiatric crisis.
The teams will thus provide specialized care from the start of an intervention and help prevent involuntary admissions by favoring solutions that are more humane, better adapted, and more respectful.
Dear colleagues, the realization of Article 19 is an ongoing process that we must shape in close dialogue with persons with disabilities and their organizations.
This discussion, I hope, is a step in that direction.
Once again, let me thank you for your participation to this event, and I give the floor, I think, back to miss Aad.
Thank you very much.
Nancy.
The next speaker is Marco Scheffler.
He will speak a little bit about the state of implementation of Article 19 of the Convention.
Marco Scheffler is the Swiss Legal Scholarship and Professor of Constitutional and Administrative Law at the University of Basel.
Scheffler internationally is recognized for his contribution to disability rights.
In 2018, he became the first Swiss national elected to the United Nations Committee on the Right of persons with Disability.
And alongside his academic and UN work, he has advised public authorities to legal reforms and published extensively on human rights, equality, and constitutional governance, establishing himself as a prominent voice in Sis on international level legal circles.
Mr.
Saffler, the floor is yours, please.
Thank you, Nadia, and good morning everybody to this side event, and we're glad that you could make it down here and did not stay up there, even though there might be quite interesting events going on soon.
The state of the implementation of Article 19 is quite a title, and I of course will not be in a position to live up to the expectation that this title evokes.
I will describe my impressions on how states implement Article 19 that were formed in the manual reviews our committee held in the last couple of years.
I will put a certain focus on Europe, this being organized by the European network.
Now, typically deprivations of the right of independent living stem from arrangements that put institutions at the center of the state's efforts to provide accommodation for persons with disabilities.
Instead of providing assistance to live in the community, the state finances institutions that segregate living arrangements of persons with disabilities from the rest of society.
These are the situations that our general comment and our guidelines on independent living address.
In general, many CRPD members make efforts to improve the choice persons with disabilities have.
I will get into three prime positive examples at the beginning.
Probably the most advanced country in this respect is New Zealand.
In our review in 2022, we noticed that this country does not operate large institutions anymore, so it can be done.
That's the lesson we can take from it.
However, even New Zealand maintains residential institutions such as group homes and residential specialist schools.
The main barriers we found were a lack of affordable and accessible housing, something that we'll see in other countries as well, and a state strategy that provides congregate living arrangements linked with shared support, something that Article 19 does not allow.
In addition, not all persons with disabilities were protected by government programs to promote independent living like people with fetal alcohol syndrome disorder and others.
We have, even in New Zealand, the most positive example that I could find, we have serious issues still at hand.
Equally at the top echelons of implementing Article 19 was Sweden, as we found in our review in 2024.
This country was one of the first to address the problem and to take action to effectively guarantee the right to independent living.
We found, however, that in the more recent past, the tide has shifted.
We found increased restrictions on personal assistance, the loss of personal assistance of a substantial number of persons with disabilities in the preceding years, and the lack of opportunity to apply for assistance for people over the age of 66.
In addition, because of the municipal structure of Sweden, the access to personal assistance varies greatly depending on the municipality, and that we saw as a problem too.
Overall, We held and Sweden was the first country to receive a recommendation to not continue with retrogressive measures under Article 42.
It has never happened before that the committee issued such a recommendations, but it's a sign of the times that even a country like Sweden is moving backwards in this way.
A third example of positive kind is the European Union.
Now my Belgian members are probably starting to think, what is he talking about? Um, it is moving towards better protection of independent living.
It issued its guidance to this effect.
However, the guidance to member states deem small group homes permissible.
Not very explicitly, but if you read it carefully, you'll find it.
In addition, EU funds have been and are being used for the construction and maintenance of institutions, and there is no effective monitoring, ensuring compliance by member states.
It's the member states themselves that monitor them.
The existing policies and investments by the European Union, in addition, are insufficiently targeted at the development of support measures in the community.
They're way too broadly conceived and are not specifically targeted to independent living.
Now, these three examples, New Zealand, Sweden, and the EU are those that stood out positively in my experience reviewing CRPD members.
This means that we would be in a better place if all states parties to the convention were on the level of these countries, even though there would still be a considerable way to go.
If we look at other states, we often look into an abyss.
Take Moldova, look at the decision of the European Court on Human Rights, IC against Moldova of last year.
Persons with disabilities and institutions were placed in farms where they face abject abuse.
They were abandoned, left to their own devices.
At the European Court, the state argued that this was deinstitutionalization when it was simply abandonment.
Or look at my own country, Switzerland.
My colleagues reviewed it in 2022 with Rosemary Kays as rapporteur.
What they found was widespread institutionalization, about 25,000 people with disabilities in a population of 9 million.
There were reports of violence and abuse in these institutions and no supervision and no numbers on abuse.
There was no comprehensive system to provide individualized support and personal assistance for living independently, and a shortage of accessible and affordable housing for persons with disabilities.
Myself looking at it from the inside being Swiss, I see there is no sustained and politically supported effort to seriously strengthen independent living.
Independent living is administered by the authorities but not moved forward.
The current state of implementation of Article 19 is probably described aptly by our committee's finding in the review of Spain.
We have EU, New Zealand, Sweden, at the top, Moldova, in a sad state of affairs, Switzerland doing nothing.
And then we look at Spain.
Probably Spain represents what we see in Europe most commonly.
We found limited access to personal assistance despite continuing positive developments in some autonomous communities, continuing investment of public funds in the construction of new residential institutions, and a lack of deinstitutionalization strategies and action plans to promote independent living.
This is probably where we are in Europe.
The most states are doing something, most are doing nothing in a coordinated manner, haphazard approaches, and no clear aim where to go.
The main obstacles are regularly insufficient support measures, the lack of accessible housing, and the lack of a clear, time bound, and and serious strategy.
Now, I only mentioned a few aspects of independent living.
There are additional serious infringements on the right that we don't usually look at under Article 19, but they nevertheless pertain to independent living.
Look at, for example, psychiatric measures either as a result of criminal proceedings or security measures taken against persons with disabilities under adult Protection Law.
There we see the connection to the right to legal recognition.
That if you remove the right of legal recognition from a person, you put it under adult protection, that person might very well end up inside a psychiatric institution with no way of deciding on her own how to live and with whom to live.
Criminal law and adult protection law are additional serious infringements on Article 19.
It's not just a lack of options, it's coercive measures taken against people and The awareness the criminal law needs to be changed in Europe is nowhere to be found.
I don't know of many criminal lawyers who are aware of the fact that their rules on measures as opposed to criminal sentences is even a problem.
And the movement in adult protection law is not going very well.
Some countries are moving forward like Spain, some countries are moving backward like Austria.
In the last budget bill, there was an attachment that reduced the that infringed on how the new adult Protection Law can work.
Overall, I would say we see that the CRPD has had a very clear impact.
We would not be in the situation where we are now without 20 years of CRPD.
Certainly, however, we are nowhere near where we should be.
We have reason to believe that if we keep pushing, if we do not let loose and exert all the political and legal influence we can muster, the fight will not be in vain, but it will not come by itself.
Thank you.
Thank you very much, Mr.
Scheffler, for giving us overview of how member states are still struggling to realize independent living not only in Europe but somewhere worldwide.
That's why with the independent living movement, we decided that there must be a matrix with different indicators that we call the pillars of independent living.
We moved for our four principles, who are self representation, self determination, choice and control, and staying out of any segregated setting into developing this into very large matrix with the pillars of independent living.
A lot of parts on it.
We will hand over some flyers later on with this pillar so you can take it with you.
It's not only about accessibility, it's about transport, it's about technical aids, it's about housing.
It's about personalized assistance.
It's about education, information, decent income.
Employment in the regular market, it's about advocacy and peer support, access to the mainstream services like health care, having also legal capacity and supported decision making when it's needed, having also the legal aid and all digital technologies and adapted services through whole life.
Now we'll go and see what is these pillars and independent living pillars.
What if we want to put these in practice? Our first speaker, will give us a little bit of challenges on inization and in all its forms.
We have miss Jarod Klein, who is a disability rights advocate.
He's a lawyer and a diplomatic serving as Deputy Executive Director of the International Disability Alliance.
Before joining IDA, Klein spent 15 years with the New Zealand Ministry of Foreign Affairs and Trade, serving in diplomatic position in Tokyo, Geneva, and New York.
Without further ado, I give you the floor, Klein.
Thank you so much, Nadia and thank you to all the co sponsors of the event.
I think for either this kind of event is so important because cost should be a place where we ask the hardest questions and the question that we're trying to answer here requires a level of honest reflection and commitment to ideals that maybe some have forgotten.
Thank you for the introduction of my CV there.
Maybe the more relevant part that I didn't put in my bio was that shortly after I joined the Foreign Service of New Zealand, I was institutionalized in a psychiatric institution for three months and not to contradict at all what Professor Sheper has said that was before the CIPD, it was in 2004.
It was what happens to thousands, millions of people, forcibly drugged, tied down to a bed in a secluded cell for observation for 48 hours, then released into the ward, then continuously forcibly medicated.
I felt then very keenly the deep indignity of being deprived of liberty.
Not to speak of the conditions and all the rest of it, that's another issue.
A question might be, does that institution still exist, if you were to guess? Well, the answer is, of course, it does.
There was an article last week in the news that some of the staff were concerned about the safety of the building.
Um, one might say that shouldn't be the dominant concern.
It should rather be not only the safety but the liberty of the people inside it.
So in a sense, and there are many, many good practices in New Zealand that have arisen since the CIPD.
But if we're being truly honest, one could say that the paradigm shift of the CIPD hasn't been applied to the issue of independent living of institutionalization of persons with psychosocial and intellectual disabilities and others.
And as to why not, as Professor Siff said, essentially there's a deep lack of political will.
Um, there's a lack of political courage, there's a lack of understanding, and all of these challenges require really serious sustained effort over many years from organizations like Eil and also OBDs across the world, and the global coalition on de institutionalization is a group of organizations really committed to continuing to do all it can across legal advocacy, political advocacy, Awareness raising can sound quite soft and concern that people should maybe understand things a bit better.
But really, it's about invigorating the deepest form of social transformation of truly changing people's ideas, of really going into the most in depth understanding of what it means to respond appropriately to diversity in all its forms.
I think, at least the Nadia that you sent me was, why do we still have so many institutions 20 years after CIPD adoption? Of course, I can't have a good answer to that question other than to say that uh, policy, law, policy and practice is still dominated by fear fear of difference, fear of, there's essentially a narrow range of expected human behavior, and if one steps outside that range, then, one is often locked up and then treated accordingly.
Um it really is about the political will that there were some reservations, of course, to Article 14, but not as many as you might expect.
So if we're being technical and legal about it, one could say that the response, the implementation has not kept pace with the voluntarily assumed obligations of state parties, which essentially was some of Professor Sheer's point there.
So, um, In terms of what we are doing about it, first there is the recognition of the scale of the problem.
Now, we don't even know how many people worldwide are in institutions based on disability.
Um, the EU, I think has some decent data, which is fantastic.
That's not matched, certainly not against the CRPD definition and not matched in other regions.
There are organizations within the global coalition on de institutionalization that are trying to equip OPDs and other people with the tools necessary to at least we can understand the scale of the challenge in front of us.
By working together, we hope to at least keep the issue on the top of the disability rights agenda, provide solutions, really hold states accountable for their obligations.
But we recognize that essentially it is a long term task.
We want to at a minimum, see a positive direction of travel.
We can argue about the pace of change, but the examples from Belgium are extremely welcome.
We're at a point where any plans, any thoughtful and consulted strategies are extremely welcome.
So, um, Essentially, we'll continue the legal fight, the political fight, and so the hearts and minds, but we're fighting against fear dominated policies, and so it really is a multifaceted and multi organization approach that is needed.
Probably, if we reflected 20 years ago when the CRPD was adopted, would we be here today? We would have hoped to be further ahead.
I think that's fair to say, but we cannot give up the fight.
Thank you so much.
Thank you very much, Jared.
So the next speaker who's going to highlight a little bit some good practices from Latin America is Mr.
Roberto Avidano Sancho.
He is S D Ferre at the permanent mission of Costa Rica to Roberto Jose Avinita Sancho.
He has a career diplomatic and legal professional currently serving with the Mission of Costa Rica.
And he is a lawyer, a notary public by training.
He also holds a master's degree in sustainable peace and Core World from the University for Peace.
So the floor is yours.
Thank you.
Thank you very much, Madam Chair Ambassador, Excellencies, dear colleagues, good morning.
Costa Rica welcomes this opportunity to reflect on the 20th anniversary of the Convention of the Rights of Persons with Disabilities, in particular on one of its most transformative promises, the right of persons with disabilities to live independently and be fully included in the community.
20 years ago, the adoption of the convention, we had made an important progress.
Disability is increasingly recognized as a human rights issue rather than a matter of charity or welfare.
National laws have evolved, institutions have strengthened and awareness has expanded, yet the reality remains sobering.
More than 1 billion people wwhile live with disabilities, representing approximately 16% of the global population.
Many continue to encounter barriers that restrict their access to education, employment, transportation, housing, information, public services, and participation in decision making processes.
These barriers undermine autonomy, limit opportunities, and prevent the full realization of human potential.
For Costa Rica, the central question is no longer whether persons with disabilities have rights.
The convention settled that question 20 years ago.
The challenge before us is whether those rights can be exercised in practice.
Independent living is not simply about where a person lives.
It's about choice.
It's about dignity.
It's about having control over one's own life, making personal decisions, participating, folding society, and accessing the support necessary to so on an equal basis with others.
That is why Costa Rica attaches particular importance to Article 19 of the convention.
Guided by its principles, Costa Rica became the first country in Latin America to adopt a comprehensive law for the promotion of personal autonomy of persons with disabilities.
Approved in 2016, this landmark legislation seeks to translate the principles of the convention into practical realities by guaranteeing personal assistance services, promoting legal autonomy, and support independent living within the community.
Our experience has demonstrated that autonomy and inclusion reinforce one another.
When people gain greater control over their lives, they are better positioned to pursue education, enter the workforce, engage in civic life, and contribute to their communities.
Conversely, when barriers persist, exclusion becomes self perpetuating.
For this reason, Costa Rica believes that independent living cannot be separate from economic inclusion.
Employment remains one of the most powerful tools for empowerment.
It provides income, strengthens self determination, expands social participation, and enables individuals to pursue their aspirations.
Recognizing this reality, Costa Rica has promoted innovative initiatives such as Port Talento Costa Rica program implemented through partnerships among public institutions, the private sector, and civil society.
The results demonstrate the value of collective action More than 11,700 persons with disabilities have been registered through the National Employment Agency seeking employment and opportunities.
The PTO for Talento House has brought together 26 organizations and network of more than 200 companies committed to inclusive employment practices.
In 2025 alone, an inclusive employment fair in San Jose involved more than 110 companies and offer approximately 2,100 job opportunities, specifically targeted toward persons with disabilities.
These achievements remind us of an essential truth.
Persons with disabilities are not passive beneficiaries of public policy.
They are workers, entrepreneurs, students, innovators, leaders, taxpayers, community builders, and agents of change.
Our responsibility as government is not to speak on their behalf.
Our responsibility is to remove barriers, expand opportunities, and ensure that support systems enable their full participation in society.
Dear colleagues, Excellencies, as we look ahead, implementation must become a word collective priority.
We must invest in accessible infrastructure, inclusive education systems, assistive technologies, community based support services, accessible transportation and digital accessibility.
We must strengthen employment opportunities and social protection system.
We must ensure that persons with disabilities participate meaningfully in the design, implementation, monitoring, and evaluation of policies that affect their lives.
And we must recognize that accessibility is not a cost.
It's an investment in more productive, innovative, resilient, and inclusive societies.
Ultimately, the success of the conventions will not be measured by the number of laws adopted, strategies launch or institutions created.
Its success will be measured by whether persons with disability can decide where to live, how to participate, how to contribute, and how to shape their own future with dignity and autonomy.
Costa Rica remains firmly committed to that objective.
Ten years ago, that 20 years after that convention, our task is clear, move from recognition to implementation, from commitments to outcomes and from inclusion as an aspiration to inclusion as a live reality.
I thank you.
Thank you very much for sharing with us Costa Rica's efforts to realize independent living for all.
And now we are going back to the roots of the independent living movement at all.
So it started from here in the United Nations not but in the US.
This is from Barkley to the United Nations.
And I'm honored to have with us today Jessica Podvka.
She's a disability rights advocate and authority serving as Director for advocacy and Public Policy at the National Council of Independent Living, Nicole, where she leads national policy and grassroots advocacy efforts to advance independent living and the Civil and Human Rights of people with disability.
Jessica, the floor is yours, please.
S was established in March 1972 in Berkeley, California.
Today in the United States, there's over 400 cells with 330 branch offices and 56 statewide independent living councils.
This is not nearly enough to meet the needs of people with disabilities across the United States, and we still have hundreds of counties that are unserved or in rural areas, rural and remote areas without access to a center.
Unfortunately, due to the political climate here in the United States, we are seeing an increase in the increase in institutions and in the closure of Centers for Independent Living.
We've had three close in the last year.
So regional collaboration and conversations like the one we're having today is extremely important in order to help us advance and sustain independent living principles and the pillars of the independent living philosophy.
It allows countries and organizations of persons with disabilities to share practical models and lessons learned on good practices, and many of the challenges that we face such as institutionalization, lack of personal assistance, or barriers to accessibility are shared across borders.
These conversations help us scale solutions faster and help one another when we are navigating tense political climates to sustain what we've built and to continue to break down barriers.
So what is a Center for Independent Living? A CIL is a user led organization, and this means that they're run by and for people with disabilities, and this is essential.
They are grounded in the human rights model of disability and they move away from the charity and medical approaches and instead promote choice, control, dignity, and self determination.
Centers provide a range of services such as peer support, advocacy, information, referral, skills training for independent living, accessing personal assistance services, transition from institutions and accessing home and community based services, or adaptive technology along with employment support and services.
But beyond these services, centers are drivers of systemic change and they work to dismantle institutional systems and promote full inclusion in the community.
They're often the front line protecting the rights of individuals protecting the rights of the individuals and the communities that they serve.
They empower individuals through peer support, which is uniquely powerful because it's based on lived experience.
They help people navigate the complex systems, whether it's social protection, healthcare, housing, or healthcare housing or other issues that an individual might be encountering.
They act as a bridge between policy and reality.
While laws and frameworks may exist, centers ensure that these rights are actually accessible in everyday life.
Importantly, they advocate for those who are often left behind, including persons with high support needs and those in rural, remote, and diverse communities.
They play a crucial role in monitoring and reporting rights violations and ensuring accountability.
However, despite their importance, centers face significant challenges.
One of the biggest is a lack of sustainable funding.
Many centers operate on short term grant or project based funding, which makes it difficult to plan and provide consistent support.
In some countries, there's also a lack of legal recognition and policy frameworks for independent living and for centers themselves.
We are seeing ongoing resistance to deinstitutionalization as systems and resources remain tied to institutional models.
Additionally, there are capacity constraints, limited awareness among decision makers and barriers to reaching marginalized communities.
There's always a need to protect the user led infrastructure nature of cells, which is fundamental to their effectiveness.
So to get to the question of what should governments do, governments must recognize and formally include centers in national legislation and implementation strategies.
Second, they should provide sustainable core funding and not just short term project support.
Independent living cannot be built on unstable resources.
Governments must also invest in personal assistance systems and community based services, which are all a foundation of Article 19.
And fourth, centers must be meaningfully involved in decision making, not as an afterthought, but as equal partners in co designing policy.
Finally, we must ensure that all efforts respect and uphold the autonomy and leadership of persons with disabilities.
In closing, implementing the independent living pillars, we must invest in and support centers for independent living.
They're not optional.
They're essential to the infrastructure and for rights realization.
Thank you very much for having me and I hope that next time that I'm here, the United States will have adopted the CRPD as well.
Thank you very much, Jessica, for sharing this with us.
So Nava will speak on behalf of as a board member of a Flemish organization NMS G is equal rights for every person with a disability.
It's a human rights organization that is lobbying for independent living for more than 25 years.
And I will take you to a very inspiring practice, and that is the person assisted in Flanders, the progress, the risks, and the human rights test.
So in Flanders, that's a Dutch speaking region of Belgium, we have disability support.
That is including personally following budgets.
There is no institution receiving the money directly.
So every person who is assessed and recognized having a disability and ask for support need and after the whole procedure, when they are granted that budget, it's a budget that they follow, just like backpack.
With it, they can choose what type of support they want to buy in, first person assistant, they can use it also for in home services, for transport.
They can use it for own cleaning services.
They can use it for whenever they want a service that can permit them to live in the community.
So it's very diverse.
There was a lot of liberty, and of course, every single cost needs to be justified.
There are a lot of organization that can support person with disability who has those budgets to justify the financing of it, so it's all transparent.
It's also possible not only for adults, but also for children, starting from 2-years-old.
When a family noticed that the child needs support, they can have personal assistant budget.
For the children, we call personal assistant budget and for the adults, it's a personally following budget.
It's direct payments and also you can have it also as vouchers, so you can choose and you can combine and it should support the person rather than the institution.
But this success was too much, so there was too many people asking for this budget, which gives that result that we have long waiting lists.
And there was reforms now in Flanders and the reforms are presented as a way to reduce the waiting lists because the CRPD committee also blamed the Flams region having more than 17,000 people on the waiting list and preventing them to live with the support they needed.
So they wanted to resolve this problem.
And so they want to simplify also the access to the support and to reach more people.
But the risk is that they are narrowing down the eligibility, and they are tightening the budget and expanding collective provision at the expenses of individual autonomy.
So when we look at a bit why this success went into failure, it's because there was, again, not a holistic approach.
It was only based on individualized support, and it was not over different sectors at all.
So instead of that the sector of, for example, for mobility, invest for accessible and personalized transport or education, did they also include inclusive education for young Zavan and having support teachers and having also assistance available? No.
It was all stuck within the Ministry of Welfare.
So the So from person centred budget, we went now to something more than strengthening and we are afraid that choice and control and the dignity of everyday life will be lost if this reform is going to form.
So the experience of Flanders showed that personal system can shift systems when right holders organize and speak out.
But it also shows that legal recognition means little if budgets are inadequate, spending rules are rigid and real choices and control are missing.
So the condition for stronger international guidance must rely on assessment based on equal participation, rather than family abortion or broad access, including children, persons with intellectual disabilities, flexibility, spending rules, and budgets large enough to secure sufficient hours and decent working conditions.
A credible transition to independent living requires more than better services.
It requires dismantling institutional logic, centering survivors of inization and the reform and transforming system so they secure freedom, dignity, equality, and belonging in the community.
Article 19 requires states to ensure access to the support people need, including personal assistance, and the debate in Flanders, therefore matters far beyond Belgium as part of a broader global test of whether states will invest in the practical condition of liberty, equality, and community life.
Independent living is not delivered by budget alone, but by enabling the ecosystem that include personal assistant, accessible housing, inclusive education, employment, healthcare, transport, legal capacity, supported decision making, and meaningful participation as reflected in the 18 pillars.
So it's important that for those who know that we all progress in that direction, I will stop over here and to hand over, but I need to leave a little bit space for more debate at the end.
So I'll hand it over to how we can achieve independent living as part of the broader Human Rights agenda.
I'm honored to give the floor to Ryo Hadda, who is a senior Human Rights expert with the Office of the United Nations High Commissioner for Human Rights, where he leads thematic work on economic, social, and cultural rights, including human rights to water and sanitation.
Please, miss Hara, the floor is yours.
Thank you, Nadia, and I'd like to thank all the co sponsors and partners for bringing us here together today.
As we mark the 20 years of Convention on the Rights of Persons with Disabilities, including Article 9 on the right to independent living and to be included in the community, this is both a moment of reflection and a moment of urgency.
Independent living is both a right in itself and an enabler of all other rights.
It is about choice and control over one's life, and it is also what makes participation possible in education, in employment, in family and community life, and in public affairs.
In many ways, independent living is the bridge between human rights on paper and human rights in practice.
Yet, we know that this bridge remains incomplete.
Across regions, too many persons with disabilities still face barriers to support services, to accessible housing, to employment, and to full inclusion in their communities.
At OSHR we are working to help close the gap between commitments and realities in three main ways.
First, through normative and policy guidance supporting the implementation of CRPD and advancing efforts on deinstitutionalization.
Second, through practical tools and capacity building, including country assessment tools and training materials to support more inclusive cross sectoral approaches.
And third, by supporting systemic transformation, including through our work on care and support systems and on business and human rights to help align services with human rights principles.
Through this work, we aim to ensure that emerging global agendas, particularly around care and support are fully inclusive of persons with disabilities.
And let me highlight three key challenges and what must change.
First, fragmented and under resourced support systems.
Too often, services exist in isolation.
They do not form a coherent system that enables autonomy and participation.
What is needed is investment in comprehensive community based support systems, linking housing, social protection, assistive technologies, transportation, and services.
Second, growing demographic and structural pressures.
Our populations are aging, families are changing, and demands for support is rising while care workforce remains under strain and still overwhelmingly made up of women.
These dynamics risk deepening inequality.
What is needed is a more integrated approach, one that connects independent living with gender equality, aging, labor, and social protection policies and recognizes care and support as a shared societal responsibility.
Third, the risk of reproducing institutionalization in new forms.
More investment in care does not automatically lead to more autonomy.
Without a human rights lens, new systems can reinforce dependency, segregation, and exclusion.
The challenge is not only to invest more, but to invest differently, to build systems that expand freedom rather than restrict it, that support community inclusion rather than segregation, that respect choice and legal capacity, and that are designed with persons with disabilities, not for them.
Independent living does not exist in isolation.
It is deeply connected to gender equality, to children's rights, to the rights of older persons, and to employment and social protection systems.
The challenges are interconnected, and the solutions must be interconnected as well.
This requires a solidarity across movements between disability rights advocates, women's rights organizations, trade unions, service providers, and governments at all levels.
It also requires us to harness digital technologies in ways that advance accessibility, inclusion, and human rights.
Let me conclude with three key expectations.
First, for state parties, invest in community based services, including personal assistance, and progressively transition away from institutional models.
Ensure respect for legal capacity, autonomy and choice in all care and support policies, and align laws, policies, and financing systems with Article 19 of COPD.
Second, for us in the UN system, systematically integrate disability inclusion into care, gender equality, and sustainable development agendas, break down silos and promote cross sectoral approaches, and support countries in transforming systems, not simply expanding existing ones.
Third, for all of us, work in partnership, center the leadership of persons with disabilities and ensure that reforms are guided by their lived experience.
In closing, we have a real opportunity before us, an opportunity to respond to the growing global challenges around care and support.
An opportunity to strengthen independent living and an opportunity to build more inclusive communities for all.
20 years after the convention, the task ahead is clear.
The next 20 years must be around transforming systems so that the rights are not only recognized but realized for all persons with disabilities in all communities everywhere.
Thank you.
Thank you very much, Maja, for highlighting this from your perspective.
So I'll open now the floor for any questions, reflection.
Yes, I see Eric over there.
Please introduce yourself and yeah, and if you have a question, also, do you address it, that if you have a reflection, please.
My name is Eric Rosenthal.
I'm the Executive Director of Disability Rights International.
We're an organization that has for over 30 years in about 46 countries documented human rights and institutions.
To pick up on one of the comments that Jared, is 20 years after the CRPD, it's stunning that we do not know whether we are making progress or regression in institutionalization.
The whole flip side of independent living is the fact that millions and millions of children and adults remain in institutions around the world and documentation is sorely lacking.
Um, so we will be having a discussion this afternoon.
There's another side event at 4:45 on what's called citizen data and an effort on the part of DPOs to start collecting that data to challenge the government practices and challenge governments to do more and to really put the knowledge in the hands of the DPOs, because without that documentation, we are not going to be able to push for the policy changes that are necessary.
The second, I just wanted to raise one more point, which is, there was a question again that Jared asked, why is it that we have institutions after all these years? In 30 years in this field, I have seen time and time again, international development organizations, UNICEF and others who've assumed that people in institutions, they're safe.
Let's focus on independent living in the community and developing community services.
Once we solve that problem, we'll go back and deal with the institutions later.
That we can put it off because those people are taken care of.
What we found is profoundly the opposite.
Unless you have a targeted program to attack the problem of institutions and to close them down, there are so many powerful forces that are working to keep those open.
Jared mentioned the fear and stigma and reasons why people with disabilities are put away because of all those forms of discrimination, but there are also powerful forces.
They are profit centers.
If a significant portion of the government's money for mental health or disability is going to institutions, you're going to have a vested interest, service providers, professionals, and in other countries, private organizations, orphanages raise money by having kids in institutions.
They vacuum up children actively in order to be able to raise the money to keep their own businesses going.
In the United States alone, there's $4.5 billion a year in faith based funding going to support orphanages abroad.
Imagine how much more is going from other countries.
We are actively exporting support for institutions and orphanages unless there is a commitment to deinstitutionalization to closing that facilities.
All the effort in the world in creating community supports is not going to counter the enormous forces that exist for keeping those institutions open.
It has to be an issue that's attacked on its head.
Again, I encourage any of you who are available at 4:45, please join us and we're going to be talking about the effort to do exactly that.
Thank you.
Thank you, Eric.
Anyone else? Yes, please.
Thank you.
Thank you, and I thank you all the presenters.
My name is Ekbi Mujingo, Director of Human Resource and administration from National Social Security Fund from the United Republic of Tanzania.
I want to share some experience in practical measures, supporting independent living.
The United Republic of Tanzania developed a the disability policy way back 2004, which was revised in 2021.
But in 2010, it enacted the Disability Act, which provides a legal foundation for accessibility, participation, and non discrimination.
Some practical measures supporting independent living includes community based arbitration and expansion.
Tanzania has carried CBR programs through local governments and non governmental organizations promoting community inclusion.
Home based support, family empowerment, assistive devices.
But also on social protection in the transfer program like Kitsaf which supports household and persons with disabilities, enabling, improve autonomy, reducing social dependence and better access to education, health, and livery opportunities, but also assistive technology and mobility support through distribution of wheelchairs, white canes, hearing aids, and prosthetic through Ministry of Health, non governmental organizations, and regional dehabitation centers.
But in my institution where I work, we set a budget, particularly to people with disabilities to assist them in different areas.
But also, we give them an opportunity to participate in different trainings, international conventions, seminars, et cetera, but also some of them have raised up to the leadership positions.
So I urge you the members and the W to continue supporting the people with disabilities because they can do wonders if they're given equal opportunity.
Thank you very much.
Thank you, sir.
Thank you for sharing with us the Tanzanian efforts to include persons with disabilities.
Yes, Hass.
Good morning.
My name is Pierre Gisling.
I'm from Belgi, the president of the Belgium Disability Forum.
Of course, we do support independent living.
That's for sure.
But there is one thing that we do not want.
We reject, how do you call it, a very strict closure of institutions.
Because we know that a lot of people who are living in institutions are there because they want to live in an institution.
If, for example, I want to live in an institution, why should I have to go and live somewhere else? Because I can be in my own house being institutionalized that's existing everywhere.
What we would like to have the state making a matrix for going on an easy way to the independent living society.
Because when you stop helping people who are living in the safe world of the institution to get them out of there, it's not what we want.
It's the same idea of the National High Council of Persons with Disabilities in Belgium.
I have here six conditions, but the network is not working well.
Hang on.
We have six essential criteria for a high quality transition, accessible general services that has been mentioned already, freedom to choose and change one's living environment, personalization, democracy and participation, priority of the life plan, training and support so that we do not from one day to another close down institutions, leave people somewhere because there is no way There is help or support for them now.
So first of all, they have to be Canvas framework and matrix how the transition is going to be performed.
If that transition system is on the road, I think that we are on the right way.
Otherwise, I think it's like some other things in Belgium could be very drastic, not working.
That's our idea.
Okay.
Thank you for sharing your warriors with us.
But indeed, there was no dismantling of institution without providing support within the community.
Otherwise, we are reproducing those who were an institution going back to institution.
That's why we are lobbying and lobbying year after year to implement that holistic approach and to build communities study that urged, for example, the 18 pillars of independent living to be refracted and fully operationalized as a core framework for all action on independent living and inclusion in the community.
Yes.
Hello.
Can you hear me? Yeah.
Tim Hart from the Australian Federation of Disability Organizations.
The Australian National Disability Insurance Scheme, abbreviated to the NDIS has a vital role in supporting the rights of people with disabilities to live independently, participate in their communities, and access supports they need, consistent with Australia's obligations under the UNCRPD.
Supported independent living is a significant budgetary component of the NDIS.
The Australian government's recently announced reforms will reduce the number of people receiving disability support by more than 20% by 2030.
Many disability advocates have raised serious concerns about the lack of consultation undertaken with people with disabilities before the announcement of the significant reforms.
I'm very interested to hear from the panel their views on why it is important that governments involve people with disabilities when making decisions that directly affect their rights, their supports, their living environment, and participation in society.
Thank you.
Thank you very much.
To close this session, I would like to give the opportunity to each of the panel speakers just one or two sentences for the way forward.
As we are here in the debate, it will be nice to hear from you.
Well, how you think we should go forward.
Maybe I will start with Jared.
You're asking the really difficult questions today, Nadia.
I think that first and foremost, we need to do all we can to change the change societal understanding about psychosocial diversity and other diversities.
Until we address that through the media, through education system, unless we root out those core ideas about people, then we won't change the laws and we won't change the policies, we won't generate the political will because there's simply not the motivation to do so.
Thanks.
Mr.
Roberto, Ventana, please.
Thank you very much.
Well, I would like to echo what the gentleman said, the way forward, the political will translate commitments to outcomes.
That is the most important thing.
We have to be place ourselves in the condition of others.
I think empathy is essential.
We can relate with persons with disabilities.
We can have families and people close to us.
We can be in that situation too So this is something that can affect us.
It's our shared responsibility to well, not only to raise the political will.
When there is a strong will, there is a way.
We have to work together.
Of course, all the pillars of independent living must be enforced.
We cannot reinforce one aspect or one pillar to the detriment of the other has to be a holistic approach.
Well, we have to accelerate implementation of the CRPD.
That is the most important challenge that we have from commitment to outcomes and we have to promote, raise awareness, to promote independent leave it as a community inclusion.
That is a very important aspect.
We have to ensure universal accessibility also one important pillar.
And we have to educate people about this situation.
And of course, we have to have the enable environment, strengthen social protection systems, for example, and something that is very important is data.
We had to document.
We have to register all the progress.
What is not recorded, what is not in paper, it doesn't exist.
So we need to know what are the current challenges so we can plan accordingly, and of course, ensuring minimum participation with people with disabilities.
So a holistic approach, that is the most important thing for the way forward.
Thank you.
Thank you very much.
I second Jared in that you're asking all the hard questions today, Nadia.
I think the way forward is through conversations, and I think here in the US, we are experiencing that.
I think conversations like the one we're having today and conversations that center the experience of disabled people and through creating space to build that community and conversations, whether that's through community building locally or nationally.
Um, places where we're bringing disabled people to come together to talk about shared struggle, shared joy, and all of the things that build community will help inform the way forward.
I'm going back to the basics of shared conversations and recognizing that no two persons experience with a disability is the same, and so centering that in the collective work that we're doing.
Okay.
Mr.
Rio Haaga, please? Yes.
I also echo others.
Independent living is the foundation for dignity, autonomy, and full participation.
But as commentators were saying, this only becomes reality unless we take a more comprehensive approach.
It needs to go together with institutionalization efforts and transformation of care and support system to be rights based, community driven, and shaped by persons with disabilities themselves.
I think the way forward is that putting the persons with disability at the center and we need to invest differently, not in old ways and working together to ensure that the promise of Article 19 will come true.
Thank you.
Thank you very much, Mr.
Shaffer.
Thank you.
I would just like to give a very, very brief answer to our colleague from Belgium.
The argument that immediate deinstitutionalization creates chaos is one argument.
The argument that persons with disabilities want to live in institutions is an entirely different argument.
I would very much caution against conflating the two.
Thank you.
Thank you very much, Mr.
Shaffer.
But last but not least, Mr.
Ambassador, His excellency, the floor is yours, please.
Thank you so much.
No, I think we heard many voices today saying that it's time to move from legislation to words on paper to implementation or to accelerate the implementation.
And that's, of course, really key.
And as was illustrated today, we need to do so in collaboration, in discussion with the people concerned, with the organizations that act as a bridge to assure that this happens in a holistic way.
Because I think that many examples that were given to give the examples from the budget in Flanders, but also the discussion here about the closures of institutions, the fact that this is implemented in a holistic way, taking all different aspects into consideration is, I think, a key message we can take away from today.
Okay.
Thank you very much.
I think if we regroup all these ideas and if we join forces, I hope that not in the next 20 years, but the next ten years, we can all come back together and say that we realized some impact that the right to support is legally embedded with the correct finance, with the current means the technical, human, and financial resources present everywhere for all persons with disabilities regardless of the type or the support need and everywhere in the world.
I would like to thank the sign language interpretations, the captioning, the live captioning.
I would also like to thank the Belgian permanent representative to group with Benjamin and his whole team for supporting us and realizing the side event.
I'd like also to thank the Board offset we Neil and the Bosch Foundation who financed and co sponsored the side event.
So thank you to all the panelists for being here, and I hope that this is just a start and all the people who attended here who were not at the opening session.
Thank you very much for being here.
Thank you very much for the people who followed us online and let's join forces and motivate ourselves and keeping the battle.
We may one from time to time won battle, but we still haven't won the war for independent living.
We should continue all together for that.
Thank you to all of you.