Deinstitutionalisation under the CRPD: Perspectives and Practice (COSP19 Side Event)

Good morning to everyone, Excellencies, distinguished delegates, colleagues, representatives of Organizations of persons with disabilities and friends.
It is my great pleasure to welcome you to this cop 19 side event on Danglization under the CRPD Perspectives and Practice.
My name is doctor Simon Drink Baudek.
I'm Human Rights ombudsman of the Republic of Slovenia and I have the honor of opening and moderating today's discussion.
This event is organized by the Human Rights Ombudsman of the Republic of Slovenia, the Swedish Institute for Human Rights, the German Institute for Human Rights, and the Ukrainian Parliament Commissioner for Human Rights in cooperation with the permanent Mission of the Republic of Slovenia to the United Nations.
We are very grateful to all co organizers, partners, speakers, and practitioners, and participants for joining us today.
The event will be held in English with closed captioning in English provided.
We regret that despite our efforts, we were not able to secure international sign interpretation.
The event is also webcast.
The topic of today's discussion is central to the implementation of the Convention on the Rights of persons with disabilities.
Article 19 of the CRPD recognizes the right of persons with disabilities to live independently and be included in the community.
This institutionalization is a fundamental component of this right.
Yet, in practice, many persons with disabilities continue to face structural barriers to community inclusion, including reliance on institutional forms of care and insufficient assets to rise community based support.
Today's discussion, we will explore current standards, challenges, and developments related to dens civilization and independent living.
We have with us today seven distinguished speakers, experts.
We will hear perspectives from the CRPD committee member, national Human Rights institutions, and independent monitoring mechanisms, Organizations of Persons with Disabilities, and the Office of the UN High Commissioner for Human Rights.
I will now turn to our first speaker.
It is my pleasure to invite Nadia Vala Bes member of the committee on the rights of persons with disabilities.
She will help frame our discussion from the perspective of the CRPD standards with particular attention to deszation independent living and the implementation of Article 19, but not only this article, but also other articles of the convention, and she will bring these standards to further discussions.
Miss Gala, Betia de Natalia, the floor is yours.
Thank you.
Thank you so much.
Good morning, everyone.
It's a pleasure to be here.
I would like to congrats the organizers for organizing this side event in the framework and the Conference of state parties to put on the table the destitutionalization process and connect this process with independent living, of course, and also with the care and support agenda or systems.
I would like to share the CRPD framework in order to ensure that this transition process from the institutionalization to the community living could be achieved.
So The first point, as I imagine everybody know, the Article 19 and the convention establishing under this article that every person with disabilities must be included in the community and the institutionalization.
Must come to the end.
How we can carry out this process.
As you may also know, in 2022, the CRPD committee adopted the guidelines on the institutionalization.
It's a roadmap to guide the state parties, the other stakeholders to carry out the institutionalization process.
Why? Because all forms of segregation, isolation, are totally contrary to the convention.
The state parties has the responsibility to ensure that all persons with disabilities can live independently and in their communities.
I would like to bring the cross cutting links with other articles of the convention.
Article 5, Article 12, Article 14 and Article 28.
We can talk about other articles, of course, but I think that these can provide some tools to ensure the institutionalization processes.
Article 5, why? Because institutionalization, as I told you, is totally contrary to the convention and itself, it's a structural discrimination based on disability.
Article 12, without legal capacity, the independent living can't exist.
Those substitute decision making models are, again, totally contrary to the convention.
Article 14, involuntary treatment, involuntary isolation or segregation, obviously is a flagrant violation to the Article 14.
I would like to add the Article 28 because to ensure that this institutionalization process can be carried out, the state parties must ensure financial support to the process.
So it's necessary to pay attention also to the Article 2028.
I would like now to link this CRPD framework on Article 19 and the other cross cutting issues with the current support agenda or systems.
For the CRPD committee, the current support agenda must be designed from a human rights perspective and we should understand that the support Must be those systems, personal assistance, assistive technologies, and all the services that persons with disabilities we need to live independently.
Must be enabling system.
Never the support system can be designed to keep or to custody a person with disabilities.
Must be enabling systems to promote the autonomy and independent living of persons with disabilities.
Last but not least, I would like to bring your attention that these processes Must be ensured equit access to housing, to employment, to participate in the societies.
Establish support making decisions, processes or models to access to the justice, genuine access to the justice to provide reparation toward those persons with disabilities who survived or who are transitioning from the institutionalization to the living in the community.
Also, the state parties, as I told you, must ensure that those budget has been allocated or invested to support the institutions segregated places, must be reallocated to ensure that superss could be provide services for persons with disabilities.
Taking into account is fundamental.
Taking into account the preferences of the person, the self advocate, and the self determination of persons with disabilities.
And I would like to end this framework to remember that in this process, the human rights and national institutions, the independent monetary bodies, and the organization of persons with disabilities play a great role to ensure the monitoring, the advocacy, and the establishment of the community living for all persons with disabilities and pay particular attention towards children, women, and elder persons with disabilities to ensure No one left behind.
I thank you Thank you.
Thank you very much, Natalia, for setting out the CRPD framework and for reminding us why dens utilization must be understood as a human rights obligation.
I'm now inviting our next speaker, miss na Turin, chair of the working group of the CRPD of the European Network of National Human Rights Institutions NR and Deputy Head of the Center for Human Rights, the Human Rights Ombudsman of the Republic of Slovenia.
Rna will present preliminary findings from ongoing N research on Article 90 of CRPD with a focus on densization, independent living, and the role of NHRId and independent monitoring mechanisms.
Rna, please, the floor is yours.
Thank you.
Thank you, Excellency, colleagues, representatives of the Organization of Persons with Disabilities.
It's a privilege to speak here today on behalf of the European Network of National Human Rights Institutions CRPD working group.
Some other members are also here present today.
As I said, I will present selected preliminary findings from ongoing in research on Article 19 of the CRPD.
With focus on desunization and the role of national human rights institutions, NHRIs and independent monitoring mechanisms, IMMs.
Drawing on contributions from NHRI and IMM from 18 countries across Europe.
This research highlights recurring trends, exemplar for monitoring practice and barriers identified by NHRI and IMM in their work.
Our starting point is Article 19, general comment number five of the CRPD committee and guidelines on the instituaization.
These standards make clear that independent living is not simply about physical location, where a person leaves, it's about choice, control, autonomy, and inclusion in community.
They also make clear that instituization is not defined only by the size and numbers, but by features such as segregation, lack of control over daily life, compulsory living arrangements, and the bundling of housing and support.
The key question is therefore not only whether institutions are being closed, it's whether persons with disabilities are gaining a real choice, real support, and real control over their lives.
The responses received from NRIs and IMM show that desitlization remains an active policy issue across Europe.
Several respondents reported the adoption of national strategies, action plans, reform processes aimed at transition from institutional care to community based support.
Some referred to progress in closing certain residential institutions or developing smaller housing and support arrangements.
At the same time, the responses indicate that implementation remains uneven.
Formal strategies or legal commitments do not always translate into practical access to community based services.
NHRI referred, for example, to delays in implementation, insufficient funding, lack of operational plans, and gaps between national policy commitments and local service provision.
This gap between policy and practice appears in very concrete ways.
Persons may remain in institutions because personal assistant, accessible housing, or in home support are not available in practice.
Smaller residential settings may be described as community based, but still leave residents with little control over where and with whom they live, how their daily life is organized, and or what support they received.
In some cases, services remain tied to a specific place of residence, meaning that housing and support are still bundled together.
But this is why this organizationation cannot be assessed only by counting the numbers of institution closed or numbers of bets reduced.
Such indicators are important, but they are not sufficient.
Monitoring must always examine whether persons with disabilities can make decisions about their daily lives, whether they can access individualized support, whether they can participate in education, employment, and social life, and whether they are included in ordinary community life, in equal basis with others.
A second recurring trend concerns the availability of community based support services.
In practice, gaps remain in personal assistant, assistance in home support, accessible housing, rehabilitation services, transport, support for participation in education, employment, and social life.
Personal assistance emerges as essential for independent living.
At the same time, access is limited by restrictive eligibility criteria, insufficient hours of support, regional disparities, waiting lists, lack of trained staff, and funding limitation.
Support system also remain too narrow in some contexts.
Support continues to focus mainly on financial benefits on institutional placements, while services that would enable people to live independently in their own homes and communities remained underdeveloped.
And persons with high support needs, persons with intellectual or psychological disabilities, older persons with disabilities, children with disabilities, persons living in rural areas face particular barriers in accessing appropriate support.
Third important issue concerns data, which was already mentioned also yesterday on a side event.
Several NHRIs and IMM reported difficulties in obtaining reliable, comprehensive, disaggregated data on persons living in institutions, persons admitted to institutions, persons leaving institutions, or persons using community based services.
In some cases, data is not disaggregated by age, gender, impairment or support needs.
In others, definitions of institutional care and community based living remain inconsistent or unclear.
This matters because without reliable data, it is difficult to monitor progress, it's difficult to know who remains in institutional settings, who is being left behind, whether resources are shifting from institutional care to community based support, and whether reforms are producing real change in people's lives.
Fourth trend concerns participation.
Several responses indicated that participation in national reform processes is not always systemic or sufficiently meaningful, especially for persons living in institutions, persons with high support needs, and persons who may face additional barriers for being heard.
This is central to the CRPD.
The iniation cannot be designed only as an administrative reform.
It must be shaped by persons with disabilities themselves, including those with live experience in institutions and those who require more intensive support.
Participation is not optional consultation exercise, it's condition for reforms that are legitimate, effective, and rights based.
Let me now turn briefly to the role of the NHRS and IMMs.
The responses shows that they contribute to the implementation of Article 19 in several important ways.
First, many monitor residential settings, social care institutions, psychiatric facilities, community based services, and support arrangements.
Monitoring activities include on site visit, interviews with residents, review of conditions, assessment of accessibility, examination of individual autonomy, and follow up recommendations to public authorities.
Um, the monitoring is important because inulization is not always visible from the outside.
A setting may be smaller, newer, formally community based, but still restrict people choices, impose routines, limit privacy, or separate people from the wider community.
This independent monitoring helps identify risk.
Second, NHRI IMS use complaint handling individual case work to identify systemic barriers, complaints reported in the survey, concerned issues such as lack of access to personal assistance, insufficient in home support, barriers to disability benefits or support services, inaccessible environments, difficulties living institutions, and problems related to decision making and legal capacity.
Third, institutions also engage in legislative review and policy advice and several reported providing opinions on draft laws, strategies or action plans and recommending stronger legal guarantees for community based services, supported decision making, living personal assistance.
Fourth, NHRS and IMM also cooperate with organizations of persons with disabilities and this also helps ensure that monitoring priorities and recommendations are informed by life experience.
Also, the responses show that NHRI and RMM face challenges in carrying out their work.
This include limited resources, fragmented mandates, lack of accessible reliable data, and difficulties ensuring follow up recommendations.
To conclude, for NNR, this research is still ongoing and we will share the final report when it's ready with everyone.
So thank you for this.
Thank you, indeed, Tinea, for presenting these preliminary findings and for highlighting the important role of NHRIs and independent monitoring mechanisms in assessing whether reforms are leading to real change in the lives of persons with disabilities.
I'm pleased to give now the floor to Mr.
Frederick Mahlenberg, Director of the Swedish Institute for Human Rights and Ola Linder, advisor of the Swedish Institute for Human Rights.
They will share insights from the Swedish Institute's monitoring work, including findings related to youth institutions and human rights concerns connected to danglization obligations.
Frederick and Ola, the floor is yours.
Thank you very much.
As mentioned, I'm Prak Mamber the director of the Institute, and also in the past before this, I was the ombudsman for children in Sweden for many years, but I hello to you, Ula.
Thank you.
My name is Oulla Linder.
I am a legal advisor and investigator at the Swedish Institute for Human Rights.
When you hear about Sweden, you may think of it as a country known for being at the forefront of efforts to dismantle institutions for persons with disabilities.
Sweden has long taken pride in presenting itself as a leading country in this field.
Aim has been to move away from care and control of persons with disabilities towards human rights, self determination and participation in society.
What we would like to describe today is that despite Sweden's strong historical record, the country does not fully comply with the CRPD, and that progress in some areas has stalled or is being reversed.
For example, we can see this in reduced access to personal assistance.
Preconditions for insufficient self determination and reemergence of solutions characterized by considerable coercion and control.
One specific thing that we have done in this field is to interview children and young people, staff members, and social workers about the situation of children and young people placed in state residential youth homes.
These are not children, it should be said, or young people that are serving sentences for criminal offenses.
Thank you.
But these children are placed in these institutions, so they are not sentenced.
It's very important to underline what you mentioned I think the mic.
Now it's on again.
Let us now listen to how a 12-year-old girl with ADHD and autism described to us at the institute what it was like to be held in a special residential youth home where she was locked in together with many other children and young people with disabilities.
Okay.
The first night is always awful.
It is always really difficult being locked in and you do not understand anything.
Social services had not told me anything about the fact that I was going to this institution.
I did not understand why I was being locked in.
On the first night, I lay in my bed and cried a little as a 12-year-old does when her freedom or whatever you call it has been taken away.
When I woke up, all of us guards were sitting together on the sofa.
Then we heard an alarm go off.
They carried her away.
She was screaming and crying, and then they threw her into the corridor.
It was as if they took her in there.
It was not as if they took her in there carefully.
They really opened the corridor door, pushed her inside, and then closed it.
That was my first day.
You saw violence every day.
For example, my friend's arm is still dislocated.
What this go describes is not an isolated incident.
In recent years, there have been repeated reports of violence, abuse, and serious misconduct at residential Fs operated by the Swiss National Board of Institutional Care.
We can change slide to the next slide.
This image here shown here depicts one such residential foams where children from 10-years-old can be held and on the picture you can see high metal fans with barbed wire on the top to describe the picture.
Hola.
Yeah.
The media, supervisory authorities, and civil society organizations have reported incidents involving staff members, putting young people in chokeholds, being convicted of sexual abuse, and giving children controlled medication without any medical justification.
In its most recent report, the health and social care Inspectorate found that children at 18 out of CS's 21 residential youth homes had stated that they had been subjected to physical violence by staff members.
In 2021, the UN Committee Against Torture drew attention to the frequent use of seclusion in these structures whereby children and young people are taken to a small room and locked inside for several hours.
The committee called on Sweden to prohibit all forms of seclusion and isolation of persons under the age of 18.
Now, if we look at another picture, we can see a couple of pictures of these types of rooms, small rooms with white walls, a mattress on the floor, and a small window at the top of the walls so you can look out a little bit, but not really properly.
In 2023, the UN Committee on the Rights of the Child also criticized Sweden and repeated the recommendation that seclusion and isolation of children should be prohibited.
And the committee also emphasized the importance of ensuring that all staff are trained in treatment methods that do not rely on coercion.
Finally, in 2024, the UN CRPD committee fundamentally questioned the operation of cis residential youth homes, and the committee highlighted the risk of unlawful institutionalization and discrimination.
Most children and young people placed in these institutions have a disability.
Four out of five have at least one confirmed psychiatric diagnosis.
Among girls, 94% have a diagnosis or display clinical and symptoms of ADHD or ADD, which are the most common diagnosis.
Several of the children and young people we have met have shared their own experiences of being placed in the isolation rooms or in secluion as they call it.
This is particularly true of girls, which is also supported by the authorities own statistics.
This is a serious indication that isolation may be used on discriminatory grounds.
The CRPD sets up a clear vision for supporting children and young people.
Children with disabilities have the rights to a family life and to live with their parents, just like other children.
When this is not possible, they have the right to live in a family environment elsewhere in the community.
The CRPD committee clearly rejects institutional care, which is incompatible with the convention.
Our overall assessment is that the care provided by cis residential youth homes has strong characteristics of unlawful institutional care and has become institutions for children and young persons with disabilities.
So in our report to the Swedish government and Parliament, we have made several recommendations, and these recommendations are, of course, closely linked to those issued to Sweden by the UN Committee on the rights of Persons with Disabilities.
First of all, Sweden needs to develop a new deinstitutionalization strategy.
Sweden also needs to expand the range of support measures available to children, young people with disabilities who are at risk of harm.
There must also be a clear prohibition on the isolation of children and young people in these institutions.
Experience shows that as long as staff have the legal authority to lock children and young people up in seclusion rooms, they will use this coercive measure and they use it at high frequency also.
We also recommend that children need to have access to redress when they have been subjected to violence and abuse.
The seriousness of the situation at these residential youth homes confirms the importance of establishing independent complaints mechanism that is child friendly and accessible to the children and young people concerned.
To conclude, Sweden was an early leader in closing institutions for persons with disabilities.
However, we are concerned about a backlash and a return to an institutional approach.
We must fully reaffirm the understanding of human dignity and equality that lies at the heart of the CRPD.
This means, for example, adopting a human rights based perspective and recognizing each person as an individual with rights.
Few people express this more clearly than the 12-year-old girl with autism, whom I mentioned at the beginning.
She said, Politicians stop seeing the people who end up in residential you homes as criminals or monsters because not everyone is.
I, for example, was just an ordinary ******* 12-year-old who had run away from home or no, I had run away from my residential care home because I wanted to go home to my mom and dad.
Of course, the 12-year-old wants to go home to where she feels safe.
Thank you for your attention.
Good.
Thank you very much, Frederick and Ola, for this important and touching contribution and for showing how independent monitoring can bring visibility to situations that may otherwise remain insufficiently addressed.
I now invite miss Jana Ofgild, policy advisor of the German Institute for Human Rights.
Jana will present current developments related to independent living and institulization in Germany, including the activities of the CRPD monitoring body and ongoing challenges relating to support system.
Jana, please, the floor is yours.
Thank you so much.
I'm very grateful for the opportunity to present today on behalf of the Germ Institute for Human Rights.
I do have slides, but there's no pictures and no graphs and I'm going to say everything which is on the slide in person, so you don't miss out in case you can't see them.
I'm really grateful for my, um, pressors for taking a much more detailed look into the situation of institutions.
I will provide a more overview on the legal structure and policy in Germany and the background is that we are currently at risk of progress being stalled or even being rolled back in regard to that.
Next slide, please.
Um, if we look at the disability support system in Germany, it's traditionally characterized by institutionalization and segregation.
If we look at the numbers in 2024, it was almost half of the people with disabilities receiving integration assistance, with a German disability assistance, were living in institutions.
If we have a look back, and when in 2009, Germany ratified the Convention on the Rights of Persons with Disabilities, this ratio was 60%.
So we do see some progress, it's also the same time obvious that it hasn't been very profound or fast even.
People with intellectual disabilities are at particular risk of being institutionalized and live in institutional seven.
Currently, they make out 64% of all residents of institutions of disability care.
People with psychosocial disability make out about 30%, I'm really happy that we had an insight because it feels a bit weird to just name the human rights violations without going into further detail what that actually means.
But by reports and studies, we do know that the human rights violations, which have been repeatedly named and highlighted by the committee on the rights of Persons with Disabilities by the Independent Living Movement and other stakeholders can be found in institutions in Germany too.
I'm just going to name the most dire ones, frequent use of seclusion and restraints, incidents of violence, lack of privacy, restriction of decision making regardless if somebody has a legal guardianship or is formally restricted of legal capacity.
Limited choices regarding support staff, regarding decisions on everyday life, a and lack of access to community and lack of access to health services.
This is just a quick overview and it shows no matter how small institutions might have become or what the resources are, that it's very inheritant to institutionalize support that this comes along with human rights violations.
So while Germany has a well developed and comparatively well funded system and differentiated disability support system, we can definitely say that there's need for comprehensive transformation.
This was also the conclusion of the last state revenue process by the committee on the rights of persons with disability, who named the ending of segregation and the implementation of Article 19 as one of the most urgent steps that the state would have to take.
Next slide, please.
So there was the most crucial attempt on a legal basis to get into compliance with Article 19 was brought by the reform of the integration assistance by the federal participation law in 2016.
It was a very complex and big reform, and it did explicitly object or the objective was explicitly to strengthen self determination and participation, and it was really evoked in the light of the CRPD.
At the same time, the second goal or the second objective of this law was also to limit or contain the rising costs of integration assistance.
Um, while not fully compliant with Article 19 UN CPD, the reform did lead to fundamental changes because it brought a shift to really a perspective not on institutionalized or institution based support, but person centered support.
For example, the main changes are that the focus of support now legally is to be determined based on individual needs and circumstances, and they established a participatory planning process where the person consent has to be participating and being able to raise their needs and preferences.
And the law also states that support is outside institutions is prioritized.
Um, Next slide.
But it's been ten years now since the law reform came into force and it's been more years since the CRPD was ratified and we can definitely still see no significant transformation of disability support.
We see there has been model projects and some movements by service providers to diversify and to we have put out support services in a more inclusive way, but there's still very persistent holding on to institutionalized support, which hasn't really changed.
At the same time, there's still a lot of barriers in the community living that persist.
One of the biggest challenges is that actually even ten years after the reform came into place, you can't really say that the implementation has been fulfilled yet, the opposite.
There's a lot of implementation challenges on state and municipal level, and I think it's also something that's typical for federal states such as Germany with 16 federal states, that the law came into force on the federal level, but it has to be implemented and the implementation has to be financed on the state and municipal level.
We see that local authorities often hesitate to approve community based support if it's more costly, that services are not available and we see a lot of structural challenges that are increasing, such as the lack of qualified support staff, the lack of accessible housing.
And so while we can say that the implementation hasn't been taken place fully, there is a current risk that there's even a setback before this implementation has taken place.
In Germany, right now, all over the social sector, there's a lot of austerity measures being coming into force are being discussed in all different sectors and also including the sector of integration assistance.
Federal states and municipalities are demanding a reform in the light of financial restrictions and costs, and there's currently a dialogue process with the ministry on social affairs on the federal level and the state and municipality representatives, which is to check out or review opportunities of cost containment or cost restriction.
This poses a really real risk that the person centered approach, which was introduced to the reform might be abandoned or restricted before this has even been implemented.
Okay, so last slide.
I'm going to be quick.
I'm just ending with what our work on this issue is because as the independent monitoring mechanism in Germany, we have or we don't do individual complaints or monitoring visits, but we work specifically on the legal and policy advisory level.
So we monitor legal and policy related processes, and by monitoring also providing statements, analysis, and consultation.
Including the peer and dialogue of integration assistance, and on a more broader level, we try to rise awareness on the right of independent living and to explain the human rights standards regarding this.
For example, by distributing the relevant human rights resources such as a general comment or the guidelines to key stakeholders.
We also tried to monitor in different federal states and we had a project on investigation and implementation on the municipal level and we provided an analysis on how There's a duty to implement the CRPD on municipal level because oftentimes this is conquested or the argument is that as I didn't sign the convention, there is no demand or obligation to fulfill.
Thank you very much.
That was it for now.
Thank you very much, Tiana for sharing the German experience and for highlighting the importance of the monitoring, both progress and the remaining gaps, both legislative and policy in the implementation of Article 19 and beyond.
I am now honored to invite miss Olina Klorodova, Deputy Commissioner for Social and Economic Rights, the institution of the Ukrainian Parliament Commissioner for Human Rights.
Olina will address barriers and challenges related to independent living and inclusion in the community in Ukraine, including in the context of martial law.
Olina, the floor is yours.
Thank you, Simona, the participants, ladies and gentlemen, friends, It's a great honor for me to speak today on behalf of the Ukrainian Parliament Commission for Human Rights on the occasion of the 20th anniversary of the United Nations Convention on the Right of Persons with Disabilities.
The convention has transformed the goal approach to persons with disabilities shifting from a model of care and protection to human rights based approach grounded in quality, dignity, and full participation in society.
Ukrainian ratified the convention in 2009 and has been consistently implementing in provision into state policy and national legislation.
A particularly important role in this process is played by the ombudsman of Ukraine, who exercise parliamentary oversight over the observance of the right of persons with disabilities.
In Ukraine, all government regulation concerning the rights of persons with disabilities must be approved by the ombudsman.
In 2025, the number of persons with disabilities in Ukraine exceeded 3.4 million, including over 231,000 children.
According to statistic, this figure has increased by approximately 600,000 a person during the years of the war.
The primary sources on information regarding human rights violation across various areas remained individual appeals.
As for persons with disabilities, near 4,500 people addressed to the ombudsman of Ukraine in 2025 and in the first five months of 2026, 2,600 from this category of person have already been received.
Separately, it should be noted that ombudsman of Ukraine receives report from the local community residents regarding the helpless condition of their neighbors and familiars, persons with disability resulting from mental disorders.
It has been established that the situation regarding social support and medical assistance for these individuals remain challenging.
And national legislation provides for such assistance only be the person's consent.
The issues of finding the mates and establish the protocols for providing assistance to individuals who are unaware of their action and they're in danger is being discussed on different platform in Ukraine.
This discussion is also related to the start of the inabilization reform.
The transition from the institutional care system to a community based social services system in an extremely challenging task in the context of war.
In 2024, the government approved a correspondence strategy of the reform and institutional care facilities till 2034.
The impetis for this reform was the Special Report of Ukrainian Parliament Commission for Human Rights on the state of observance of social and economic rights of adults in need of guardianship under the legal regime of martial law.
The recommendation outlined in the special report created conditions for changes to the legal and institutional protection of person in need of guardianship in accordance with the requirements of the Convention on the Rights of persons with disabilities.
I would like to know that Ukrainian adopted the law on social services in 2020.
The government has introduced social services for supported living, social support, home care, social adaptation, and other services that enable people to live independently.
The ombudsman of Ukraine permanently exercise parliamentary oversight to ensure citizens' rights to receive these services.
The monitoring result of the omudsman of Ukraine have shown that the provision of social services at the local community level is carried out within the financial limits of local budget without according for all needs of services recipients.
Since the beginning of the full scale invasion of Russian Federation into Ukraine, the situation regarding the financial capacity of local community has significantly deterioration.
Deteriorated.
The reasons for these include destruction of infrastructure, reduction and loss of production capacity, an increase in the number of social services recipients and the loss of labor resources as a consequence of the war.
Due to lack of funding, many people are forced to remain in institutional facilities because they are not alternative.
Despite all these challenges, there are also positive examples at the community level.
In Ukraine, there are support living facilities and social training apartments where persons with disabilities who previously lived in residential care facilities now manage the daily lives, independently integrate into the community, and develop independent living skills.
We are convinced that even in time of war, human rights must remain an unconditional priority and we are grateful to our international patron for our support and solidarity with Ukrainian people.
Thank you for your attention.
Thank you very much, Elena, for bringing this important perspective and for highlighting the particular challenges of protecting and promoting the rights of persons with disibity in such a difficult context.
Our next speaker is miss Nadia Kdat, Vice President of the European Disability Forum and co chair of the Board of the European Network on Independent Living.
Miss Kadat will bring the perspective of civil society and organizations of persons with disabilities, which is essential to any discussion of independent living, institutionalization, and community inclusion.
Dear Nadia, miss Cadet, the floor is yours, please.
Thank you very much.
Can you hear me? Yeah.
Thank you.
Good morning to all of you on my side and thank you share for giving me the floor and thank you for having the European European Disability Forum here today for this very important topic.
The European Disability Forum is an umbrella organization defending the rights of more than 100 million persons with disabilities and their family all over Europe.
Today, we wish to place the 18 pillars of independent living at the very center of this discussion because they offer a concrete, right based and intersectional framework for implementing Article 19 and for making independent living a reality for all persons with disabilities.
The pillars show clearly that independent living is not a single service or a technical reform or a narrow social policy objective.
It is a comprehensive transformation of society rooted in dignity, autonomy, legal capacity, and choice and control.
It requires also a full range of interconnected conditions, accessible, affordable, and adapted housing, barrier free communities, transport and information, personal assistance, and other individualized support, access to assistive technologies, inclusive education, and lifelong learning, equal access to work, and open labor market, inclusive healthcare and long term support, legal capacity and supported decision making, Freedom from installization, coercion and violence and any other segregated settings, access to justice, social protection, political and public participation, peer support, advocacy, and access to mainstream services and facilities on equal basis with all the others.
These pillars should not be treated as optional or secondary.
Together, they constitute the practical architecture of the right to independent living and being included in the community.
As general comment number five on Article 90 makes it very clear, independent living is one of the broadest and most intersectional right in the convention, and it cannot be realized through fragmented measures or cultural reforms.
It is precisely why access to mainstream services must be understood as a central component of independent living, not as an afterthought.
So persons with disability must be able to access healthcare, education, housing, employment, justice, social protection, transport, digital services, and disaster responses on equal basis with others without being diverted into segregated or disability specific systems by default.
At the same time, disability specific support such as person assistant and peer support, advocacy, and individualized community based services must be available, adequately funded, and fully under the control of persons with disability.
So none of this can be achieved while persons with disability are denied legal capacity or placed under guardianship or subjected to substituted decision maker or controlled by professionals and service provider.
None of it can be achieved while states continue to invest public money and institutions or in renovating or expansion or modernization of segregated settings under the false language of accessibility and inclusion.
And none of it can be achieved while structural violence persists through force treatment, restraints, seclusion, confinement, and other coercive practices, particularly against person with psychosocial disabilities and persons with electoral disabilities.
The serious commitment to these pillars therefore require a repeal of laws and policies that sustain inization and substitute decision making, the redirection of resources toward community based support, and the establishment of rights based systems that respect the will, the preference, and the leadership of persons with disabilities.
Finally, Any discussion about independent living and de stization must fully acknowledge the profound harm caused by intonization and the urgent need for truth, redress, and accountability.
Survivors of interonization must not be treated as passive beneficiaries or consulted only symbolically.
They must be recognized, resources, and supported as leaders of the reform.
Without survivors leadership, there can be no genius in destabilization.
Without legal capacity and mainstream services and personal assistance and peer support, freedom from violence and sustainable investment and community support, there can be no independent living.
So the pillars make this indivisibility clear.
They remind us that independent living is not about adapting institution.
It's about dismantling systems of exclusion and building communities in which persons with disabilities can live with freedom, equality, dignity, and full participation.
We therefore urge that these pillars be explicitly reflected and fully opized as a core framework for all action on independent living and inclusion in the community.
I thank you.
Dernadia, thank you very much for this important civil society perspective and for underlining that persons with disabilities and their representative organizations must be at the center of reform processes.
Dear colleagues, our final speaker today at this event is miss Katherine Pedro Ross, Human Rights Officer at the United Nations Office of the High Commissioner for Human Rights, working with the Committee on the rights of Persons with Disabilities.
Katherine will reflect on dangerouslization from the perspective of human rights, justice, and redress and on the broader implementation of CRPD standards in practice.
Katherine, the floor is yours.
Thank you so much.
Good morning, Your Excellencies, Madam Simona Renick, Ombudswoman of the Republic of Sslonia, members of the committee on the Rights of Persons with Disabilities present in this room, representatives of the National Human Rights Institutions, Organizations of Persons with Disabilities.
Ladies and gentlemen, I'm very grateful and honored to participate in today's exchange.
I have had the opportunity to work with persons with disabilities for almost 20 years as a staff member of the United Nations in my country of origin and at the Secretariat of the Committee on the Rights of Persons with Disabilities.
I would like to bring today one perspective based on what I have witnessed on my professional journey.
The institutionalization for persons with disabilities is a necessary measure to fulfill justice, redress, and reparations.
Accounts of persons with disabilities in this conference, testimonies during the COVID 19 pandemic and testimonies in ongoing conflicts and humanitarian crisis around the world show that institutions expose people to isolation, higher risks of dying and barriers to evacuation and life saving assistance.
Human rights monitoring undertaken by independent human rights institutions, persons with disabilities and their organizations and other civil society organizations continue to find that violence, abuse, neglect, and harm are inherent to institutions.
This was just witnessed by the National Human Rights Institution in Sweden.
The institutionalization for persons with disabilities, therefore, is a mean to recognize justice for millions of people who have been marginalized and discriminated against due to institutionalization systems.
Accountability, justice, and redress are a demand by persons with disabilities.
Preparing and adopting the institutionalization policies and strategies for persons with disabilities is not only desirable, but also an urgent appeal for decision makers and state parties to the convention.
I have been able to hear testimonies of survivors of institutionalization and violence who claim justice, reparation, and redress.
They claim their individual cases and also seek recognition and redress for others who continue under closed doors.
They work to increase awareness of the harm faced in institutions and for the release of persons from institutions.
They fight to regain their place in their communities, their dignity, and their lives.
Justice and reparations are possible.
The Committee on the Rights of Persons with Disabilities has addressed the obligations of state parties to render justice, remedies, reparations for persons with disabilities.
The recommendations issued by the committee in 2026 in the scope of an inquiry report and procedures under the optional protocol, and its recommendations included in the guidelines of the institutionalization, including in emergencies in 2022, provide us with a concrete framework and measures to respond to harm.
Committee has called upon states parties to fulfill their obligations to investigate and prosecute perpetrators of violence and abuse against persons with disabilities, identifying ill treatment, torture, violence and abuse in institutions.
It has called to ensure access to justice for women and girls who experience gender based violence in institutions.
It has called for redress for victims of institutionalization, including two guarantees of non repetitions and reparations, compensation, restitution, habilitation and rehabilitation.
It has also recommend that ensuring redress and reparations should respond to the impact of an individual's life during and after institutionalization.
The need to recognize the right and make it possible for persons with disabilities to file complaints while in institutions.
The committee recalled that where children or adults are in institutions and are unable to file complaints themselves, national human rights institutions and advocacy organizations may be authorized.
This is unfortunately not the case in many states parties to the convention.
The committee has also emphasized the need to ensure accountability of actors involved in institutionalization systems.
The committee has recommended to introduce mechanisms for the provision of formal apologies to survivors of institutionalization and establish truth commissions to investigate and promote public understanding of all forms of institutionalization.
It has called states parties to design and implement remedies with the consultation and involvement of persons with disabilities, particularly survivors of institutionalization.
My personal pledge is to continue listening to people with disabilities and continue speaking about freedom, recognition, and human dignity.
Thank you for your attention.
Thank you very much, Catherine, for your valuable contribution and for linking decization with justice, redress, and the broader Human Rights Framework.
I would like to thank once again to all our speakers for your rich and thought provoking contributions.
We now have some time for questions and comments from the audience.
I kindly ask participants to keep their interventions brief so that we can take several questions.
Please introduce yourself and your organization before asking your question.
Yes.
Thank you.
Good morning, everyone.
I hope you can hear me.
My name is Mered Radar Hussein.
I'm from Jordan.
I head the delegation from Jordan and I'm the chairman of our Higher Council for the rights of Persons with Disabilities.
I'm very happy to say that we have a DI program.
We legislated for DI in 2017 and we're on our way.
And to tell you the truth, I was coming here today hoping to hear something positive, and I must say I'm quite astonished regarding my mother country.
My mother is Swedish.
And for the last ten years, I've been telling everyone back home how fantastic Sweden is on the eye.
I was really quite astonished by what I've heard this morning.
And You know, a message to Germany and Sweden, you know, the two countries that are resource rich with a very educated population, you know, if you don't get it right, what message is that what message are we sending to the rest of the world? You know, and you have to get it right and so that, you know, you are a role model for us.
And if you don't get it right, all countries that are thinking about DI going to say, Well, look, Germany and Sweden aren't able to do it.
Why should we bother? I really think it's such an important issue and we are pushing ahead on the issue.
We are facing problems also.
I'm not saying we're doing it perfectly, but we understand that it's systemic abuse and in my view, it's the most urgent issue because it's systemic abuse that's happening every single day in all our countries and it should be given the urgency that it demands.
I two questions, maybe this for all the panelists.
Could you point to one particular country that is really getting it right that we can learn from? That's one thing.
The second question is, Frederick, if you could just tell us the numbers.
If you have approximate numbers of youth who are I was shocked by looking at the high level security prison that you showed us, the photo.
That's just a unbelievable.
I never in 1 million years would have imagined that in Sweden, such an institution exists, but could you give us an indication regarding the numbers, please.
In these institutions, around 1,000 children a year are placed.
Some of them are sentenced to be there for serious crime, like 14 of them, I would say, 25% to 30%, but the rest, they are placed and many of them are children and they have not committed crimes, they're not sent there for that reason.
What we learned from the social authorities at the local municipality level that place children there or that they know that this is quite detrimental to place these children there, but they feel that they have no alternatives.
That is why it's so important to address that issue and to have a strategy so you can come up with better solution because this solution is not the solution.
It's really, really bad as you heard.
We have so many quotes from children and so many reports, not only from us, describing how detrimental this of setting is for these children.
Yes, please.
First, the lady back there and then Thank you very much.
My name is Sophia.
I'm from the Australian Human Rights Commission.
I also wanted to extend solidarity to our colleague from Ukraine and just acknowledge the difficult and challenging circumstances in which you're working.
This is a very rich panel.
We're dealing with very similar issues in Australia with a cost containment, that's impacting the continuation of institutionalization, and as well, similar to Sweden, this move towards coercion, we have governments in Australia that have brought the age of criminal responsibility down to as low as 10-years-old and we've got governments using lines like crime, adult time.
I guess my question is, what we're dealing with now, um, is a different phase or a different institutionalization.
In some places, these large institutions still exist, but definitely in Australia, we're seeing people in psychiatric facilities, sometimes staying there for a very long time and people with disabilities moving into incarceration, criminal justice system.
And so I guess I've just been thinking about, you know, like the underlying ableism.
This is no longer just about paternalism.
This is not a benevolent type of protectionism.
It's a criminalization of disability and it's very politically charged, and it's very difficult to shift, and it's the biggest barrier, I think, that we'll face in progressing de institutionalization in these settings.
And I guess I'm just curious as to your views as to how we use the CRPD and its framing and maybe as well other international human rights law.
To shift these attitudes.
Thank you, gentlemen.
Thank you everyone.
Thank you all the contributors.
I'm very new to this world of CRPD and persons with disabilities.
I am from Bangladesh.
Bangladesh is an LDC country.
In countries like ours, the concept of community living, community support, individualized care is very, very absent.
So I am still not very clear.
When you say from institution to deinstitutionalization, what is wrong with institutions? I would like to know from you, is it that in institutions, all the persons with disabilities are treated equally, they are not given independent choice.
That is the customized choice or they do not get the individualized support that they need.
May I earnestly request you please do not laugh at me because these are very basic for you, but I am very new to this world.
What do you mean by institutions here? Is it a jail system or putting them in a government owned housing or something like that? Countries like ours, we do not have any idea or any finance for community based living, independent living, who is going to finance for community based living the concept is very absent in our country.
I will be very happy if you kindly explain the meaning of institution here and why you want to move from institutions to the institutions.
Thank you very much.
Natalia, are you going to take on that? Yes.
Thank you.
Thank you for the questions.
I would like to say many things, but the time is not enough, but I would like to leave some key message and key points.
First of all, the responsibility of the guarantee of the human rights for everyone, but in this case, for persons with disabilities, reminding the state parties.
The state parties must ensure the financial support to ensure the independent living for persons with disabilities and to carry out as we mentioned in the different interventions to carry out the transition from institutions to the community to the independent living for all persons with disabilities.
The state parties must reallocate the budget to strengthen the support system for persons with disability, the community support system for persons with disabilities.
Also, we would like to add another cross cutting issue, which is awareness and also the state parties, together with organization of persons with disabilities and of course, with all the stakeholders, must carry out awareness campaign to promote the rights of persons with disabilities, but in particular to come up with those prejudice and preconcepts towards persons with disabilities, in particular, persons with intellectual or psychosocial disabilities, to ensure that every person with disability can enjoy their rights and the right to live independently and their autonomy.
We can a talk for a day, for a week, for a month.
We have many challenges on this relevant issue.
But I think as Catherine and other colleagues just mentioned, the committee has provided to the state parties recommendations to end the institutions, to promote the transition to the community.
One additional relevant point, the lack of community services cannot be an excuse to force persons with disabilities into institutions.
There are different jurisprudence into the committee from different countries, from different regions because the state parties of the convention keep this challenge on the table.
Thank you.
Thank you.
What is wrong with the Well, I would first like to say that I would like to thank you all for your contributions, questions.
Unfortunately, we need to officially finish the meeting because we are running out of time.
We can, of course, have informal discussions later during the break.
But I would officially now like to thank all the co organizers and all the speakers for your excellent points, for discussion, for showing how important indeed the independent monitoring is, how important the participation of organizations of persons with disabilities is, how important is that we all understand that human rights based approach is the only approach which is compatible with the CRPD, and that we should move forward on these important issues in all the countries and that decision makers should really take this seriously as a putting standards from the CRPD into practice.
I would like to thank you all once again for these, I think, wonderful and successful discussions which should give us energy for moving from standards to practice.
I thank you very much.