Citizen Data on Residential Institutionalization for Persons with Disabilities (COSP19 Side Event)

Well, it is late in the day and I'm impressed at how many people have the stamina to show up for one more side event.
I thank you for your energy.
All the panelists have committed to being controversial enough to keep your blood flowing, keep you awake.
It is a real pleasure to welcome you here for the side event on citizen data on residential institutions for persons with disabilities.
Um, this event is a collaboration of a number of organizations that have come together not just for this side event itself, but it is kicking off a larger project on citizen data, and as I will describe later, we'll be doing a series of trainings to help organizations of persons with disabilities collect citizens data.
I particularly want to thank ITA, the International Disability Alliance, CBM, and the Collaborative on Citizen Data.
They have a broader citizen data project which is dedicated to providing the documentation and the input by people with disabilities and organizations of people with disabilities so that we can monitor the convention, identify where we're making progress or not, inform public policy, and at bottom, the core idea recognized in the CRPD, that people with disabilities through organizations that represent them have now a recognized right to participate in monitoring of the rights in the Convention on Human Rights more broadly.
IDA CBM and Collaborative on Citizen Data is being joined by my organization, Disability Rights International.
My name is Eric Rosenthal.
I'm the founder and Director of Disability Rights International.
We have conducted human rights investigations in 46 countries over 30 years.
This very much draws on our experience in this area and it is truly wonderful to be talking about how we can expand this process globally.
I also want to especially thank three governments that have co sponsored this event, the governments of Sweden, Finland, and Lithuania.
I noting the government of Lithuania, I will just identify to my right that it is a particularly wonderful moment to celebrate that one of our palaist Davil from Finland has just been elected to the CRPD Committee.
I So we are celebrating and we have a little authority on the panel and really, really very much appreciate and really happy for you.
I Our first speaker will be the Ambassador for Human Rights of Finland, Katia Perman.
Miss Perman is ambassador for Human Rights.
Previously, she worked as the senior advisor at UN Women responsible for issues related to enhancing gender parity and equality.
Miss Perman has more than 20 years of experience in multilateral diplomacy, negotiations, and leadership throughout which enhancing human rights have always been at the forefront of her work.
Thank you, Katia.
Thank you so much and thank you for the introduction and invitation and congratulations for the result today.
Excellent.
Distinguished colleagues and dear friends, it's an honor to open this very important side event that brings together such a distinguished panel of experts.
Today we gather around an issue that is both very urgent and deeply human, the continued institutionalization of children and adults with disabilities.
And the profound gaps in the data that should inform our response.
Nearly two decades after the adoption of the Convention on the Rights of Persons with Disabilities, we have a clear global commitment that segregation in institutions is not simply a matter of policy concern, but a violation of fundamental human rights.
The CRPD calls on member states to end institutionalization, to stop new placements, and to invest instead in inclusive and community based systems, and yet millions of people with disabilities remain behind closed doors, often invisible in statistics, unheard in decision making and excluded from the very communities to which they belong.
One of the greatest barriers to progress is a lack of reliable, comprehensive, and transparent data.
Government reporting is often fragmented or incomplete.
Institutions themselves are frequently inaccessible to independent scrutiny.
Definitions vary.
Oversight is inconsistent and as a result, the true scope of institutionalization is likely far greater than official numbers suggest.
But beyond the numbers, there is an even deeper gap, the absence of lived experience that we heard of this morning.
Too often, data systems fail to capture the voices, testimonies and realities of persons with disabilities who endure neglect, isolation and abuse within institutions.
This is where the promise of citizen data, especially data led by organizations of persons with disabilities, becomes transformative.
Since 2010, we have made systematic efforts in Finland in reducing institutional care for both children and adults.
Since the New Disability Services Act came into force in 2025 in Finland, children's housing can no longer be arranged in institutions.
The focus is on providing necessary support at home, even around the clock if necessary.
Today's discussion will shed light on the barriers faced by disability organizations in accessing institutions, share key findings from a global survey, and explore practical recommendations for strengthening data collection and transparency.
Importantly, it will also highlight how citizen driven data can complement official systems and drive meaningful policy change.
As we begin, let us remember, data is not just a technical issue.
It's a matter of rights, recognition, and justice.
Without accurate and inclusive data, progress cannot be measured and obligations cannot be fulfilled.
I hope this event will be a step toward greater visibility, stronger accountability, and ultimately a world where all persons with disabilities can live fully included in their communities.
Thank you very much and I look forward to an impactful discussion.
Thank you for that excellent introduction and for your leadership in this field that is so much appreciated.
We have an amazing panel here.
I'm going to introduce people in more depth as we go around and hear from them, but I just want to mention who we have to look forward to.
Jared Kline, Deputy Executive Director of the International Disability Alliance.
Silvia Quan, the founder and president of the Collectio Vita Independen Guatemala, and also a member of my board at Disability Rights International.
Daville whose name I Thank you.
I couldn't even try that one.
The Lithuanian delegate to the European Committee on the Prevention of Torture, and newly elected member of the CRPD Committee, Anders Lago, And I will also not try to pronounce the name of your organization.
Maybe you can mention it.
Do that.
Okay.
Very good.
And Yang Yi Min, Acting Chief of Development Data and outreach branch of the UN Statistics Division, a great diverse panel.
I So I was asked to summarize the findings of our survey on this issue.
As the ambassador stated, the core challenge we have here is that one of the greatest human rights violations that exists, to my mind, in the world today, are the treatment of people with disabilities who are segregated from society in closed institutions.
Of 20 years after the adoption of the CRPD.
We have extensive anecdotal data and many, many human rights reports.
My own organization, if you look on our website from around the world, from dozens of countries, we have found torture, abuse, exploitation, trafficking, severe neglect, high death rates, horrendous abuses.
The UN Special porteurs on torture have noted the extremely high rates of torture and increased risks of inhuman and degrading treatment.
And given the fact that this is such a tremendous human rights violation, how can we not know whether all of our activities, investments that are going on around the world are making progress or not? Every four years the UN has reached out to us for help with the UN Sustainable Development Report and asked us, are we making progress or not making progress? Every year, we have to give them the same answer.
We know that there are very serious abuses, but big picture, we do not know.
And so the results of our survey show a number of things.
Now, I'll just mention we have only preliminary results of the survey.
The survey is going to be continuing and we will be issuing a final report by the end of the year.
I have printouts of some of the preliminary results of the survey that I'm happy to share with people after the event.
But drawing on some of the reports that we found in the survey and from our own experience, Um, Number one, the core question of the definition of what constitutes an institution.
It's not just a question of size of numbers, the idea of individual autonomy and choice and where that choice is taken away.
The other side of it is that the definition of an institution for children is different from that for adults because the UN has recognized that all children have a right to live and grow up in a family.
And that a small institution or a group home is a form of institutionalization.
If we can't agree on the definition of an institution, how can we begin to get numbers? At a previous session, we talked about the conflict of law.
Without those definitions on institutions for children alone, the estimates run 2000000-10 million.
We know that many factors, more adults, IDA has come out with an estimate of 25 million.
My guess is that it is actually well more than that.
How we define institutions is essential.
Um, but the other aspect of it is that an institution is not just institutions.
There are psychiatric facilities, there are social care homes, there are immigration detention facilities, there are forensic wards of criminal justice systems.
There are substance abuse detention centers.
There are federal, state, private, the number of ministries that are tasked with overseeing these institutions around the world, you can't go to one country and there is not one country in the 46 that we have looked at where any one authority is between ministry of health and education and labor responsible for collecting data and more importantly, Not only is one ministry not responsible, but many fall between gaps and no ministry is responsible.
We have found more and more often that institutions are entirely unregulated.
As we have focused the attention in a number of countries on large psychiatric falls, for example, what have countries done? They've moved people like a shell game to private unregulated facilities, and it is harder and harder to monitor them when they are decentralized, placed in locations in remote areas where no one sees them, and so the challenges are enormous.
It's also important to put on the table that what goes on in these facilities are often things that governments don't want to admit to.
We have seen not only government corruption, the use of funds in the mental health systems, vastly larger percentages of funds go to institutions than to community based care the creation of institution may employ the entire population of a small town, may employ a large percentage of all the psychiatrists in the countries.
Again, labor unions that are watching their jobs, there are many, many vested interests, and then inside the institutions.
If you've got abuse, if you've got torture, if you've got trafficking, there are many, many motivations why a government might not want to admit to what's going on in institutions.
I had an incredibly powerful experience earlier this year where a major country, a friend of this convention, um, has a legislation and funding for a national authority to monitor institutions.
I sat across a woman who was nearly in tears, who told me that we monitor what's going on in institutions and the government won't let me release the data.
They know and not even to other ministries and other officials within the government.
It was like out of Kafka.
So these are challenges.
How are we going to respond to these challenges? Well, as in so many other areas, people with disabilities need to take leadership.
And the idea of this that we have a fabulous panel of organizations, all who have been involved in this and we'd love to hear from their experiences, both in terms of challenges and in terms of recommendations for what governments can do to do better.
Our organization is committed to capacity building, and we will be putting on a series of workshops later this year.
We're very happy to share that information as soon as we have dates, and so our idea is to empower disability organizations all around the world to document.
I have had one experience which is above and beyond all others, which is that the documentation from what you find in institutions is less important than the process of documentation itself.
In seven different countries, we hired a local partner to help us document institutions.
It is such a transformative experience when you've walked the hallways, when you've smelled the stench of urine and feces, when you've talked to people whose hopes and dreams have been taken away from them, you will never be the same.
In terms of seven activists in seven different countries set up their own disability organizations after going through that experience.
We had a process with a member of the CRPD committee where the United Nations did an official inquiry of conditions and institutions in a country and we watched as that member of the CerraPD who was making sure to dot every I and cross every T, is it systematic abuse? Is it pervasive abuse? Is it severe? He was dotting his I's and crossing his T's.
But when we watched over two weeks of him wandering through institutions, we saw how powerfully he saw, I am not going to accept these government justifications for why the situation has to be it is.
We need to get people with disabilities in institutions all over the world, and we're never going to have a true constituency for reform until people with disabilities have gone in.
The major finding of our survey, shockingly enough, is that the majority of disability groups around the world have never been inside institutions in their own country.
If they've been into one kind, they haven't been into the other kind.
We've identified 13 different kinds of institutions and no one has been in everything.
So the challenges are enormous and we welcome this opportunity to address them today.
Moving on to our first speaker.
Our first speaker from the International Disability Alliance, Jared Kline.
Jared is the Deputy Executive Director of AIDA.
He provides strategic direction to IDA's advocacy work, develops partnerships, covers risk management, manages legal affairs, and leads the substantive work of the organization.
He has a legal and diplomacy background and worked for the New Zealand Ministry of Foreign Affairs for 15 years with postings in Tokyo, Geneva, and New York, and is currently based in Brussels.
I would just like to thank you personally because you are the moving force behind pulling this all together, and we are deeply appreciative of your work in this area.
Thank you, Eric.
This is a generous introduction.
I should probably update my bio and make it a little toned down on my website on the ID website.
But something missing from that bio, which I mentioned this morning at a different event was, um, a couple of weeks after I joined the New Zealand Foreign Ministry, I had what is called a manic episode, which was a lot of fun.
Then I was detained, un forcefully medicated, taken down to another city, locked up in a very small seclusion ward, tied down to a bed, injected some more, and then eventually released into the general psychiatric ward.
At Walkie in Duneden and was there for three months, and that experience, I suppose is part of why this event, this topic is personally important to me.
But the feeling I had then, which was over 20 years ago, predated the CIPD, so no violation as far as New Zealand is concerned, was the immense injustice and indignity of being deprived of liberty.
So I could talk about the treatment there, the conditions, but that's a distraction because people think, well, maybe if we design it better, maybe if we have adequate food, maybe if we have better trained staff, then perhaps we can create an institution, a form of separating people from the world that is humane and just, but that is profoundly untrue and that would be a delusion, maybe greater than the psychotic delusions that I was experiencing.
Um, I also thought there must be a better way why can't I be with my family? Why can't I be in my own home? I also knew that I didn't have much legal recourse.
Because having just graduated law school, I knew that a judicial review would take six to nine months and cost me $10,000 that I didn't have.
Anyway, all that aside, if we talk about lived experience, that was some lived experience for myself 20 years ago.
And here we are 20 years later with the CIPD, but still the mass, more or less incarceration of people with disabilities as a matter of systemic state policy.
I want to first recognize the courage and the way that it takes from governments like Finland to even co sponsor this event because part of the reason presumably why the numbers are not counted is because the level of self awareness and self reflection and admitting that the state itself was doing something that perhaps probably actually shouldn't be doing that requires great courage and honesty and from having worked for a government previously and being part of CIPD and other reviews and responding to individual communications.
Naturally, states don't want to admit that violating human rights in this way.
But I was looking recently, for reasons I can't fully explain it.
It's the census from the UK in about 18 62 and they had a question, are you deaf, dumb, or mute? They did in their own way, disability disaggregated data in the census and even today, that's Article 31 and some states do it, some states don't.
But I think the difference in that case is that that was around the start of larger scale institutionalization of people with disabilities.
Eventually, of course, people with certain forms of disabilities wouldn't be on those sensors at all because they would be locked away.
In a way, there's the injustice of the deprivation of liberty, the injustice of the institutionalization, and there's also the injustice that you don't even count, that you're not counted, that you're not relevant, that you are secluded, you're locked away, you're separated from your family, you're really not a valuable member of society, which is Not a great message really.
I think for the International Disability Alliance, we hope always that COSP is a place where some of the toughest questions can be asked, even if not answered.
If we go and ask ourselves, our governments, our own organizations, what are we doing to address the deepest and most challenging human rights concerns? And our initial response to that is we will take all the steps we can to at least ascertain what the true number of people that are institutionalized is today or next year, perhaps.
We know, for example, that there are official statistics, there are 11 million people roughly globally that are in prison for criminal offenses, and yet the numbers of persons with disabilities is probably three, possibly four times, maybe more times greater than that, and yet that is unacknowledged.
Um It's also, I think Eric and I were discussing the other day, essentially, we have model estimates, projections.
The EU has some good data, so credit to the hardworking people at the EU in terms of the numbers of people with disabilities and older persons with disabilities that are institutionalized.
But just model estimates at this stage, it's really not enough.
So that's something we can build on in the way it's a challenge to states if we say, we estimate the number is 25 million Great.
Please fulfill your Article 31 obligations and give us a more accurate number.
We would be delighted to know it.
Of course, on the basis of the CRPD definition of what an institution is, we know that the language can shift.
You don't want to call it institution, it's a small care home, it's whatever it is, pick your name.
So don't think that we can be fooled by a rhetorical adjustment, we need to operate on the basis of the CRPD definition.
I'm really looking forward to hearing the rest of the panelists and the discussion today.
There was a bit of a rant from me, but I guess hopefully you can sense the passion and commitment from the International Disability Alliance on this issue.
And thank you to Eric and Da for this event.
Thank you.
Thank you.
Our next speaker, Sylvia Kuan, has a unique perspective on this, having both been a member of the CRPD committee herself and seeing the global monitoring of rights, having worked for a national ombudsman responsible for monitoring institutions, and as co counsel in a case that her organization as ours, documenting conditions in a psychiatric facility in Guatemala where horrendous horrious abuses have taken place.
Thank you, Sylvia.
Sylvia, Give me 1 second.
Is the founder and president of the Collectvo Videa Independenient de Guatemala.
She formerly led the defense unit within the ombudsman's office, was a member of the CRPD committee.
She's a senior consultant for the Initiative on preventing and eliminating violence against women and girls from Legs and she's on the board of Directors of DRI.
Thank you, Sylvia.
Thank you.
There you go.
Of course, thank you, IDA, CBM, and DRI for organizing this event and also for the co sponsors, the governments.
I want to talk a little bit about my experience as a person with a disability, but not necessarily lived experience being institutionalized.
I started visiting institutions when I worked for the ombudsman office in Guatemala in 2003.
Um, I wasn't really prepared for monitoring these type of institutions.
I think that it is important to mention this given the initiative that DRI has started with the global survey, but also ahead of doing some capacity building for persons with disabilities that want to learn how to monitor or visit an institution, what to look for, what to document.
My own experience shows a little bit that if you're not really prepared, you don't know how exactly to do it and maybe you might figure out what you will find.
But in my case, when I visited the National Psychiatric Hospital in Guatemala, it was so horrendous.
And the things that you were able to see were happening, not only widespread abuse, human rights violations, even torture, extreme isolation of persons with mental health issues, but also a lot of absence of hygiene and a lot of corruption also going on with the staff.
It was a dangerous thing to do if you were not properly protected.
I was because I was, of course, coming from the national human rights institutions.
But in the case of members of civil society organizations, this is something that people should be aware of that, especially in those very abusive, institutions where staff is, of course, part of those abuses and those human rights violations, it can be a dangerous thing to do.
So um, I had the privilege of also being part of the ad hoc committee that drafted the CRPD.
While I was participating in those meetings 20 plus years ago, I had the privilege not only of learning from people with lived experience of having survive institutionalization, but also learning what organizations like Disability Rights International were doing by disclosing what was happening in all kinds of settings, institutional settings.
And that, of course, it gave me many tools to better my work when I did this visits, but also as a person with a disability be empowered to conduct these monitoring visits that were of course in line with disclosing human rights violations in line with the then, um, being constructed CRPD.
I think that this is an opportunity that we cannot miss, and I would really encourage all persons with disabilities and organizations of persons with disabilities, but also other actors like national Human Rights institutions and other NGOs to get involved in this effort.
I think that institutions are I would say secret places where nobody that has never been in there knows really what's happening, but we need to disclose what's happening in all these kind of setting.
I'm really amazed that Eric has said that he has identified 13 types of institutions.
I could count maybe five, but of course, I think there are many settings I have never been into.
I really thank everybody for being here and I encourage you to continue and follow on this fantastic work.
Thank you.
Thank you for.
You know, Sylvia is modest about the personal risks that she has taken.
Human rights monitoring, disability monitoring is usually not something where you take your life into your ends.
But she and I had an experience after we filed and won our precautionary measures at the psychiatric facility in which we accused the staff of torture and of trafficking people at the facility.
When we came to facility, she and I were locked up in the administrator's office surrounded by angry staff who asked us to apologize and retract our allegations before we would be let out.
Um, Sylvia was cool as a cucumber and she negotiated our way out of that situation by promising that, of course, on our website the next day, a full and thorough clarification of our position would appear.
They let us out and of course, we didn't put that clarification on our website.
I had the luxury of going home to Washington DC.
Sylvia did not have that luxury and has faced the potential for very serious reprisals ever since.
Thank you for your courage, Sylvia.
It's really an incredible thing to watch you in action.
Our next speaker, the newly minted member of the CRPD Committee.
Oops, this is to show that I was keeping time on the previous speaker.
Dauvile her now outdated bio, I will mention that she is on many national preventative mechanisms under the optional protocol for the Convention of Torture to monitor institutions.
She's on the European Committee for the Prevention of Torture.
And also helped develop the World Health Organization's monitoring toolkit, Quality of rights based upon principles on the CRPD.
I think that the staff to implement that has now been defunded, but apart from that little detail, has incredible experience monitoring institutions and understands what the opportunities and challenges are.
Thank you, Davila.
Thank you so much.
First of all, thank you for inviting me to this side event and it's really an honor to be also speaking with a great panelist.
Indeed, what Eric probably didn't mention that for the 25 years, I am also with the Lithuania Disability Forum, actually also working very closely and on advocacy for the institutionalization, but also for the human rights of people with disabilities within institution, outside institution in various settings.
Indeed, since 2003, I started also to start monitoring the institutions.
I've been probably not in all the 13 settings that you mentioned, but major ones and starting really from maybe 15 persons living group homes to 2000 or more psychiatric institutions that are still existing the European region.
I will base probably my remarks on the recent European Union Agency for Fundamental Rights Fra report that is published last year and really on my experience in visiting institutions and monitoring those institutional settings that are still very widely existing in the European Union.
So according to the Fundamental Rights Agency Fra report, approximately 1.4 million people in the EU live in institutional settings still.
I am sure that this is probably the minimum number of people since again, Fra also mentioned that there are diverse institutional settings and also still missing data on the people inside those institutions.
But in 2025, the FRA conducted socio legal analysis across EU members and candidate countries highlighting persistent risks faced by people with disabilities in those institutions.
The report called Places of care equal Places of safety violation against people with disabilities in institutions provide actually the visual picture of institutions as a house of violence.
Because there is what Fra mentions as a foundation of violations and violence is the invisibility of those issues, prevalent societal norms, and normalization of institutional forms of care.
The key of violence is also lack of resources, rights, awareness, and access to redress and manifestation of violence varies from subtle, psychological, verbal violence, neglect, restriction of liberty over medication to the explicit forms such as physical sexual violence, forced sterilization, and arbitrary use of restraints.
And since people living in those institutions are often separated from the community life, dependent on support providers with a limited control on their own lives, these abuses can remain hidden for a very long time and the right to protection and effective remedy are not realized.
So this is why effective monitoring and access to justice are essential and this we heard.
And FR also mentions that monitoring systems across Europe are often fragmented, insufficiently independent, and also very much lacking both financial sufficient resources, but also very specifically disability specific expertise.
That's why to identify obvious but also subtle forms of abuse, monitoring should be very targeted, fully independent, and adequately resourced and grounded in human rights principles.
And of course, access to justice is another very crucial aspect that FR report is mentioning.
Despite widespread violations, persons with disabilities living in institutions continue to face significant barriers in accessing justice.
This, as again, representative of NGO, I can mention how many times people with disabilities from the institutions refer to NGOs because there is no one other wanting or willing to help them, or even they are not accessing any other legal remedies.
Bars are legal, physical, informational, communication related, and many residents depend on the very staff members that they may need to report or fear retaliation.
Those practices are also normalized.
Some people, some residents, they do not even understand about the abuses because those practices are very much normalized in the institutional settings that they are.
FR recommends, of course, very clear confidential, accessible reporting mechanisms and coordinated referral systems.
But importantly that general victim support services are often inaccessible and suitable for people living in institutions and those should be really there should be reasonable accommodation, but also very targeted measures.
Approaching people living in institutions.
What I also wanted to mention is one good practice that actually Lithuania is implementing.
As Eric mentioned, the World Health Organization developed quality rights toolkit based totally on the CRPD principles, which supports transformation of mental health and social care services in line with the CRPD and Lithuania has started to actively implement this approach.
In 2023, ministerial order even established the formal framework for applying this methodology across psychiatric and social care institutions really to ensure that those institutions meet human rights principles, but also are continuously monitored based on this methodology.
And there is not only the um trained national expert team that is very from the diverse professional background.
For instance, me as a lawyer, social worker, psychiatrist, but also the people with service users and with expertise from their life should be also involved in those monitoring teams.
This is why quality rights toolkit and the methodology is really quite a extensively used throughout the other countries, but also in Lithuania, which really supports not only to identify subtle forms of violence, but also to promote cooperation with institutions participation and continuous improvement.
And finally, on improving data collection, I also want to mention that FR highlights a major lack of reliable data on persons with disabilities living in institutions and also recommends that not only the desegregated official statistics and cogregated data by disability, age and gender, should be collected, but also measurement of human rights outcomes such as freedom of choice, use of restraints, access to support, participation in community life and complaints outcomes should be also very clearly documented and gathered.
But most importantly, Fram makes one final point very clear that stronger safeguard of human rights is the institutionalization itself.
Moving from segregated institutional settings to community based support and independent living.
So this is shortly by intervention and I'm happy to respond to any.
Thank you.
Thank you.
Wonderful.
But thank you.
Actually, we are remarkably proceeding on time here.
It looks like we'll have some good Q&A.
Andrés Lago is the chair of one of Sweden's largest disability rights organizations, which works with and for people with intellectual disabilities.
He's also a board member of Disability Rights, Sweden, the umbrella organization for the Swedish Disability Rights Movement.
Has previous experience as municipal mayor and as chair of the Board of Sweden's largest cooperative housing company.
We had an interesting discussion in preparing for this call about Sweden is known for having closed its institutions.
The question is, does that mean there really aren't any? Andrés will help us look beneath the lid of that claim and find out whether or not it's really true and what the actual experience of people with disabilities is.
Thank you so much.
Thank you, Eric, and I will try to explain that we had closed the institutions, but we have in one way, some small institutions.
I will come back to that.
The reason why I is involved in organizations for disabilities rights in Sweden is that I have a son with an intellectual disability.
So it was natural for me when I have a some time over to engage me in this type of organizations.
Dear friends, It has been 20 years since UN adopted the convention, 20 years.
But there are still so many millions of people around the world that don't have the support so they can live like others.
And I can tell you this also applies to rich countries, well functioning countries like Sweden.
We still also have problems, challenges in this area.
But in Sweden, to, um, come back to this with small institutions in Sweden.
When we closed the large state institutions in Sweden.
It was about 30 years ago.
The disability movement in Sweden, together with the municipality, together with the state with developing two different models of two models for independent living.
One form is that in both forms, you're living in your own apartment.
In that way, it's really independent.
But the one form, you have your own aparpant but you have support with personal assistance that is paid by the state.
That type of personal assistance, it can be 724 and it could be a lot of persons that help one person.
So you have that support that you need.
The other model is that you are living together with other people, five, six, mostly six persons.
In a way of family like forms, you have still your own apartment, but you have also some common rooms and you have staff around even there every time around the clock.
And we don't in Sweden, not from the moment and not in the discussion, we don't see this type of small family home like institutions.
We see that is an opportunity to live for your own.
You have your own apartment, but you live in a community with others.
The good thing with this is just that.
My son is living in one of those Euros group homes that we call it.
It's fantastic that you have some friends there and he has support 24 hours.
It's a good way, we think that those small institutions for people with intellectual disability or also some other disabilities.
It's a really good form.
But Everything isn't good in Sweden either.
We have a legislation in a new legislation for 30 years ago that is in line with the convention.
For 20 years, it worked very well.
But since the last ten years, we have seen major changes.
I should tell you that today it's a struggle to get efforts and support even in Sweden.
We can also see that in Sweden, a lot of the support for disability people it's the municipalities that have the total responsible.
Today, we can see that the municipalities, they prepare and they build larger group homes, more than five and six people.
They also want to place group homes on the top of each other.
Then you have an institution.
Again.
There was only last week a report on this from Swedish government agency and of course, we are opposed to these models from the organizations.
I can say that also from the disability rights movement very concerned about the development in Sweden.
It's about both the possibility to have support It's very tough today.
It's about the quality and even now that we can see that municipalities are on the way to rebuild institutions, even if they are smaller than the one we closed for 30 years ago, because then it was really, really big institutions in Sweden.
So even in countries like Sweden that had come a long way to realize the convention, it's need for organizations that monitor and very hard discuss what is happening in the country.
So we from the civil society and disability rights movement, we have a very important work to do even in Sweden.
But back to the seminar and about counting and statistics, I think, of course, this is very important and needed to have figures and statistic.
But I would also highlight the need for personal stories.
You can't only have the numbers, you need to have a person that give us information about practice and about the situation, for example, in institutions.
I can tell you that in Sweden, it's for us and we work very hard with this now in my organization.
And then the members own stories are really important because they are the only persons that have the knowledge how it works in practice.
We need to both give these stories to media, to newspapers, to television, but also have them when we meet politicians, both national and local.
It's important to have the numbers, but it's also so important to have the stories from the people.
And Li, and I think it's this gap about the convention and how we see it in practical works in money country.
I think in the first, it's about will.
It's secondarily, it's money.
But in the first way, of course, it's the will of what society will you have? Ask the politicians in every country, what society will you have? I think it's interesting.
I have some contacts with Ukraine and I'm really impressed that in Ukraine now they work hard to change the model of disability rights from institutions to something else.
They are doing that in the same time, they're trying to hold back the wall of aggression from Russia.
And we support them from Sweden, both economically and also with knowledge and experience when we close the institutions.
But can Ukraine do this? Close the institutions and find some new ways to support people with disability? Can they do that during the war? Then can every country do this? It's just the will.
So thank you and thank you, Eric.
Thank you, Anders.
Really appreciate your perspective on this and your cutting through what we call citizen data.
This is human beings, human beings and their lives and actually making sure we talk to them and allow them to express themselves and capture their voices and stories.
That is so essential.
Really appreciate your work on that area.
You and I have to have a conversation about Ukraine after this because I've seen some rebuilding of institutions in Ukraine, including with international money.
We have to talk about that.
All right.
Our last and final speaker, Yang Yi Min, acting Chief of Development and Data, outreach branch of the UN Statistics Division.
She leads the global program on SDG monitoring, including the management of the Global Indicator framework and support to the interagency and expert group on SDG Indicators.
She also oversees a portfolio of initiatives on data innovation for development, including Data for now Initiative and the Collaborative on Citizen Data and Administrative Data.
Which advance the production analysis and communication of development statistics for evidence based policy making.
We've talked about all the challenges of obtaining data, but figuring out how to collect that data in a manner that the United Nations can actually incorporate into its work, I think is something that we really appreciate hearing from you about and your recommendations for how we can do a better job of helping the United Nations do that.
Thank you so much for your perspective.
Thank you very much, Eric, and thank you for all the co organizer for this very important event.
Good afternoon, everyone.
Data not just numbers we heard, they determined who is seen, whose rights are recognized, and who counts in public policy.
When people are missing from the data, they too often missing from decisions as well.
As Andrés just mentioned, data are not just qualitative.
They also include quantitative, but they also include qualitative information of the lived experiences.
So nowhere is this more evidence than children and adults with disabilities living in residential institutions.
So 20 years after the adoption of the CRPDs millions of people remain segregated from society, often behind doors that are closed to independent monitors and civil society.
Yet we still cannot answer basic questions.
Are we making progress towards community inclusion? The answer is simple that we do not know the global pictures because the data are missing.
The government reporting on institutionalization is fragmented and incomplete.
The facilities are managed by different authorities or sometimes none at all.
I also mentioned definitions varies across countries and many facilities are difficult to access and the lived experience of residents are rarely captured.
So this is precisely where citizen data can make a transformative contribution.
Citizen data, the data produced by communities and civil society can reach population that conventional statistical system often struggle to reach.
The organization of persons with a disability have trusted relationships, local knowledge, and direct access that enable them to document who is being placed in institutions and work conditions and with what consequences.
Just as importantly, they ensure that the voices of people with lived experience become part of the evidence space.
But citizen data should not be viewed as an alternative to official statistics.
It's a compliment that strengthen the national data systems and make them more inclusive.
This is a vision behind the Copenhagen framework on citizen data.
This global standard was endorsed by the UN Statistical Commission in 2025.
The UN Statistical Commission is a global body on statistics and data standards.
This framework has been developed through a multi stakeholder process involving national Strategic O, civil society, human rights institutions, and development partners, and the framework provides a common approach for integrating citizen data into official decision making while emphasizing governance, accountability, community ownership, and meaningful participation.
So we are already seeing this approach in practice through the collaborative on citizen data in many countries, particularly in Africa.
For example, in Malawi, they have integrated citizen data into the national strategy for development of statistics.
In this so they use citizen data to fill critical gaps in their 2025 voluntary National Review in Kenya National Statistical Offices and civil society are working together to improve data on indigenous communities.
This example demonstrates that citizen data is moving from the margins into national data ecosystems.
Importantly, the disability inclusion is embedded in this work.
The stakeholder group of persons with disability serves as the collaborative steering committee, and they help ensure the citizen data initiative designed with communities rather than for communities.
But challenging remains our recent stock taking across more than 150 organizations identified a strong momentum, but also persistent challenges, particularly limited capacity, inadequate funding and institutional resistance.
The strongest message was clear, country and civil society need greater investment in capacity building and sustainable partnerships.
Let me conclude with three simple messages.
First, governments should embrace citizen data and open institutional settings to independently monitoring and meaningful engagement with organizational persons with disability.
Second, data collection must follow a governance centered approach that respects consent, dignity, and community ownership, consistent with the Copenhagen framework.
Third, building a complete picture requires partnership.
So the National Statistical Office, governments, civil society, human rights institution, and organizational persons with disability all have a role to play.
So better data on persons and children in institutions is not mentioned as not a technical exercise it's essential to measure the progress on CIPD.
So informal better policies and fulfill the promise of the 23 agenda to leave no one behind, including those who have too often remain invisible.
Thank you.
Thank you very much for that.
A lot of very concrete suggestions there at the end.
You mentioned the importance of governments embracing citizen data and considering it part of their responsibility to collect data that it's not an alternative but a part of their obligation.
If we're going to have that collaboration that you speak to, there is one element that I just needs to be emphasized, and that is access to institutions has to be recognized as a right.
CRPD Article 16, CRPRD Article 4, sprinkled throughout the CRPD is the recognition that organizations of people with disabilities must be involved in implementation of the Convention and in monitoring of it.
It is recognized as a right in the convention and in the UN guidelines on deinstitutionalization.
There is very detailed language about what governments must do.
In the recent inquiry on Mexico, there are three different mentions that the CRPD mentions and challenges that they saw.
One of the biggest problems was the citizens could not get into institutions.
There are a lot of problems in this world that are resource limitations, that are informational limitations that are prejudices, Access to institutions should not even be up for discussion.
It should be open.
The doors need to be open until we have access, it costs nothing on the part of governments to open up the doors and allow OPDs inside and we should not tolerate a situation where that is allowed to take place.
In our survey that we will be publishing, we have find that that is the most widespread problem that organizations face, a lack of access.
The doors are shut.
What are you hiding? Why would you be shutting the doors if you weren't trying to stop people from seeing? There is an inherent question about rights violations whenever people are closed behind closed doors.
We now have an extra few minutes for discussion and so we'll entertain questions from the audience.
Participants here.
Are there questions for the panel? Yes, sir.
Thank you.
Yes.
I'm very happy I was able to join this discussion.
My name is Hiroshi Taman.
I'm here as a member of the CRPD.
I'm happy to introduce myself to my new colleague from Lithuania.
Excuse me the interpreter's pronunciation, but miss Dell.
We will now be working together on the CRPD.
I'm excited to continue working with you in the coming term.
So I learned much from this discussion today, and I agree with your opinions and offerings today.
The committee agrees it is deeply important the concept of deinstitutionalization.
And it's also more important that data needs to be produced alongside person centered stories.
Once we've collected that data, as well as those citizen accounts and personal stories, we're able to bring them together to create more effective messaging and communication.
For example, a If a country is trying to create a constructive dialogue with us, we're able to use the data and leverage the data along with those stories to help ask more questions and create more effective results.
As you all mentioned, I wanted to voice my agreement with a lot of what you've brought up.
Then a question that I might offer to you all, as members of the committee, what recommendations might you have for our committee? I'm curious how we can move forward based on this survey.
Thank you.
Recommendations to the committee.
Panelists want to jump in.
I have Sylvia.
Puts on.
Okay.
Well, I think that Eric has made some clear ones with your closing words just a few seconds ago about asking governments to open up institutions and allowing for citizen participation and monitoring.
I think that the CRPD is quite clear about that.
Article 33, paragraph one, excuse me, paragraph two about a about monitoring.
It does encourage persons with disabilities to participate in independent monitoring.
Besides the Article 16 about independent monitoring in relation to violence, abuse, and exploitation.
But I think that committees explicitly ask governments to open up.
To allow for citizen participation and to deinstitutionalized for persons with disabilities and OPDs to actually participate in the planning of the institutionalization plans, but also during the institutionalization processes.
So I think that is a strong recommendation that committee should give governments.
Okay.
Yes.
Yes.
Thank you so much for the question.
I think I was also very much thinking about what should be done more.
I think the extremely important thing is also to legal access to justice, not to wait for people to refer, but be more proactive and we all have in different countries so called state legal aid or agencies that support victims of domestic violence or victims of crimes or violations of other human rights.
I guess this is also extremely important system that we should make sure that those systems are covering also persons inside the institutions.
I have one also as Anders was saying that the stories and individual cases make the difference.
Just very recent case that the person living in institution cannot actually go out after Friday 4:00 P.M.
Until the Monday because of security issues and when complaining about the situation, she was just rejected because of security reasons.
Again, it's not only the outside doors are locked down, but also from the inside, people cannot out and even complain or even claim their rights.
I think access to justice is very important system also.
One more question from participants.
Yes, in the back.
Thank you, analysts for a very interesting discussion.
My name is Caroline Jago.
I'm an academic activist based in Ireland.
I'm wondering if there's any stories based on your talking about access to these institutions as needing to be a right of governments opening up or having legislation for private institutions because we have a lot of private institutions in Ireland, and this is where there's possibly a really big challenge in terms of even if the government was to open up their institutions, how long is this journey going to take? I'm wondering if you've got any good news stories for us or good practice examples.
You are right to reflect that private institutions are more difficult to access than everywhere else.
I know that in the United States, the protection and advocacy system, there's a federally funded system where in every state, there is a monitoring body that has a right of access institutions and they do have access to private institutions.
From the US, there is a model.
But other Sweden, Yeah.
We have the same regulation for private institutions that municipalities institutions.
So both of them must be open and give you the information, for example.
I think that we are actually out of time, but thank you very much.
I appreciate your stamina and staying for a long day.
I hope this discussion continues.
Please stay on notice.
We will be doing a series of workshops to train skills in monitoring, and I look forward to reconvening and hope you will all come back for those discussions.
Thank you.