Supported decision-making of persons with disabilities – Best practices of legislative reforms and delivery of support services at international level (COSP19 Side Event)

Okay.
Good afternoon.
Welcome to the Cyprus presidency's side event with the the supported decision making of persons with disabilities, best practices of legislative reforms, and delivery of support services at international level.
The event is co sponsored by the European Union, the permanent missions of Ireland, Peru, Kenya, and Uendesa and with the participation of International Disability Alliance and Inclusion International, whom we deeply thank for their participation and contribution.
I am Christina Florenzo, Acting Director of the Department for Social Inclusion of Persons with Disabilities, under the Deputy Ministry of Social Welfare in Cyprus, and I will be moderating today's discussion.
Let me tell you what will follow during our side events.
Our side event is for 1 hour and 15 minutes.
After the opening remarks by our Deputy Minister, we will have five minute interventions by the representative of the European Commission, the representative of the European Parliament, and then we have representatives from Ireland, Peru, Kenya, and Cyprus, and also from the International Disability Alliance and Inclusion International.
Then a question and answers or more interventions session will follow for 15 minutes and we will close our side event with the closing remarks by Usa and again, our Deputy Ministry of Social Welfare.
So First, I invite the Deputy Minister of social welfare of Cyprus, misses Claire Hajtefano Papa, to deliver her opening remarks at this side event.
Deputy Minister, you have the floor.
Thank you very much.
Excellencies, distinguished delegates and participants.
It is a great honor to welcome you to this side event of the Cyprus presidency of the Council of the European Union at the 19th Conference of States parties to the Convention on the Rights of Persons with Disabilities.
Allow me to also express my sincere thanks to the European Union, the permanent missions of Peru, Ireland, and Kenya, as well as U and Tesa for supporting our event.
Special thanks also go to the International Disability Alliance and Inclusion International for their participation.
It is also firmly aligned with one of the core pillars of the Cyprus presidency's priorities, the promotion of an autonomous union of values grounded in human dignity, equality, and the full and equal empowerment of all persons to exercise their rights without barriers.
Article 12 affirms a fundamental principle that persons with disabilities enjoy legal capacity on an equal basis with others in all aspects of life.
It recognizes that every individual has a right to make decisions about their own life and to be provided with the necessary support to do so.
This represents a transformative shift away from substitute decision making models towards approaches grounded in autonomy, will and preference.
Supported decision making is therefore not only a legal or technical concept.
It is a human rights based approach that redefines how societies understand independence.
It recognizes that autonomy is not exercised in isolation, but is often enabled through relationships, accessibility, and tailored support systems that respect the individual as a primary decision maker.
Today's discussion is particularly timely.
Across jurisdictions, we are witnessing important legislative reforms, policy developments, and practical initiatives aimed at embedding supported decision making in law and in practice.
These developments reflect a growing recognition that persons with disabilities must be empowered to exercise control over their lives with the support they need to do so effectively.
The concept note for this event rightly highlights that supported decision making frameworks must be grounded in respect for dignity, self determination, and the will and preferences of the person.
It also underscores the importance of safeguards, oversight mechanisms, and continuous improvements to ensure that such systems truly serve the individuals they are designed to support.
At the same time, this shift requires more than legal reform.
It requires a change in mindset among policymakers, service providers, families, and society at large.
It requires trust in the capacity of persons with disabilities to make decisions about their lives and recognition that support, enhances rather than replaces personal agency.
In Cyprus, we strongly believe that empowering persons with disabilities to make their own choices is a cornerstone of inclusive and rights based societies.
This commitment is reflected in structured consultation with organizations of persons with disabilities and in our ongoing efforts to strengthen supported decision making services through recently adopted legislation and a new EU co funded project implemented in cooperation with the Cyprus Confederation of Persons with Disabilities as service provider.
We also recognize that there is no single model of supported decision making.
Rather, there is a diversity of approaches that can be adapted to different contexts.
What unites them is a shared commitment to ensuring that the person remains at the center of all decisions concerning their life.
This issue was a thematic focus of the high level conference hosted by the Cyprus presidency in May.
The conference served as an important platform for the exchange of best practices and policy approaches aimed at strengthening autonomy and promoting the empowerment of persons with disabilities.
This side event provides an important opportunity to learn from international experience, to exchange good practices, and to reflect on how we can collectively advance the implementation of Article 12 in a meaningful and practical way.
I would like to thank all the speakers and participants for their contribution to this discussion.
Your expertise and experience are invaluable as we continue to strengthen our collective efforts to promote autonomy, inclusion, and equality for persons with disability.
I wish you all a productive and inspiring exchange.
Thank you.
Thank you very much, Deputy Minister, for your opening remarks.
Now we proceed with the interventions, and our first intervention will be by misses Igulata Placencia Barreiro.
She is a senior expert on disability in Digen Justice European Commission, and she is also a UN CRPD committee member.
And Emma, please have the floor.
Thank you.
Thank you very much, Christina and thanks very much to the Cyprus presidency for bringing this topic on the agenda of this CRPD Conference of State Party.
Because Article 12 on legal capacity is one of the most novel articles in the CRPD.
It's the one that has got really an incredible transformative power and it permeates really each and every of the articles of the convention.
Yet is one of the most challenging articles to implement because we're dealing here on challenges faced on empowerment of persons with disabilities, on self determination, and on autonomy.
To that end, legal capacity is a precondition for the equal recognition before the law that Article 12 indicates.
This means that legal capacity is an attribute that is inherent to all persons because they are humans.
They are human beings and must be uphold on equal basis with others.
Legal capacity, as many of you know, is the ability to hold rights and to act on them.
It means being recognized as a person before the law, as I said, and someone that can enter contracts, vote, consent, medical treatment, or manage their own finances, making our own decisions, and not being substituted by someone else decisions.
When Legal capacity is denied.
It has devastating consequences for an individual.
This is something that is highlighted also in the strategy on the rights of persons with disabilities because you lose fundamental rights, the right to vote, the right to marry, the right to parent, the right to refuse medical treatment and institutionalization becomes a high risk.
People are locked away in care, homes, or psychiatric facilities against their will.
Someone else knows better.
There is also the risk of being victims of financial exploitation.
The assets are controlled by guardians, sometimes who may in some cases not act in the person's interest or in the person's will.
Of course, it can lead to social exclusion when choices that you make are not respected and when people are treated less than other human beings.
The CRPD committee makes it very clear legal capacity is a universal right, is not something that can be taken away because of disability and disability must never be a justification for denying someone rights to make their own choices.
Legal capacity is a right of immediate realization as a civil right and it is not subject to progressive realization as some economic rights are.
Traditionally, countries rely on substitute decision making systems where a court, a member of a family or guardians makes decisions for the person often without the consent.
The committee identifies three major flaws in those systems.
First, the status approach, legal capacity is denied because a person has a disability.
Then also the functional approach when persons with disabilities get the legal capacity denied because they failed to pass a test on decision making skills.
Can you understand the consequences of your preference? The third one is about the best interest approach.
Decisions are made for persons based on what other thinks is best for the persons and not what the person actually wants.
These approaches are discriminatory against persons with disabilities and because it assumes that persons with disabilities cannot make good choices.
Yet we are all making risky or unwise choices sometimes and decisions.
The difference is that persons with disabilities are not allowed to make those mistakes and learn from those mistakes.
Worse, still, substitute decision making risk perpetuating abuse.
Guardians can restrict the freedom, the control of finances, or even authorize force treatment all without meaningful oversight.
The committee is clear these systems must be abolished.
Instead of substitution decision making, the CRPD demands supported decision making.
I think the examples provided by Cypress during the conference were really illustrative that it is a model that can be done and how can be implemented.
It's a model where persons with disabilities retain their legal capacity, but can access the support to make and communicate their choices.
This, by the way, is just a legal obligation of the CRPD.
There are many formats of support, and I think we will hear more today in this event about it, informal support from friends and family, formal support from trained advocates and communication assistant, for example, accessible information provided by bank courts, hospitals, and so forth, and community based networks with support from neighbors, friends, schools, or other organizations.
The key principles of supported decision making, respect is respect for wills and preference and not the best interest.
They should not be for support.
People can still refuse that support and no mental capacity test should be carried out.
Safeguards against abuse, mechanisms to challenge supporters who act against a person's wishes should be in place.
The general comment that deals with Article 12 is really providing clear clarity on the obligations for governments.
Governments need to abolish substitute decision making laws.
They need to ensure accessibility.
They need to train that professionals, including judges, doctors, and other professions that are involved in this matter.
They need to provide resources to support to ensure that the support is free or affordable and they need to involve last but not least, persons with disabilities, laws and policies to change to implement Article 12 require the direct involvement of persons with disabilities.
Now, let me turn a little bit to the European Union before finishing, to say that a new strategy, we call it enhanced strategy on the rights of persons with disabilities, which sets actions from 26 till 2030 contains an initiative on this matter about a study on pulling together decision making regimes and legal capacity legislation in the member states.
The intention is really to showcase supported decision making approaches for self determination, empowerment, and autonomy.
To finish, just to conclude, the denial of legal capacity is a pervasive human rights violation facing persons with disability today.
It strips people from dignity, autonomy, control over their own lives.
It also disempowers and is a barrier for self determination.
But the CRPD, as I mentioned today, offers a clear path forward, replace substitution of support.
This is not only about laws, but it is also about changing minds and practices.
Thank you for your attention.
Thank you, Emma for your intervention.
Our next speaker is miss Karine Lansen, member of the European Parliament and Deputy Head of delegation of the European Parliament's mission to this conference.
Misses Langsen, you have the floor.
Yeah.
Thanks, Madam Chair, thanks to the Cyprus representatives to all made it possible that Europe can be here on the table in that very important conference.
The Article 12, as I, my colleague from the Commission already mentioned, is a very relevant one.
Um let me put it into two, let's say, roads, from the parliamentarian side, we are working on it to have the law that people with disabilities or under legal guardianship has a right to vote and to get elected.
But to get elected and to be a member of the relevant and off a powerful parliament, It starts in the early childhood.
When I learn my opinion is not worth it, it makes no sense that I raise my voice, that I have no opportunity in the kindergarten or in the primary school to say what I want because there's a very practical solution.
I don't learn to raise my voice and I don't know, and I don't learn that I may have one day a political power.
When it comes to political power, it means, am I part of a table, sorry for my language, for blah, blah, or do I have a relevant, powerful role? Nothing about us without us means a powerful position.
That means with us.
We in the European Parliament made it possible and it is in the end, not in the power in the hands of the European Parliament, it is in the hands of the member states.
Do people with disabilities get access to elections, have the right to vote and especially let's give my home country, Germany as a bad example, people needed to go to the court to get the right to vote and it was in 2019.
It is in the end, a question of ableism.
Persons with disabilities are not able to, you don't know if they can really deal with their capacities.
It's better that I decide what to do.
We in the European Parliament working currently in the so called trialogue on a law and to make it possible from an EU line, from an EU perspective and the power we have as Parliament and its commission to make it possible.
You mentioned the strategy.
The strategy is good to have a strategy, but in the end, we need to have the money.
Funding.
In the previous debate, we had the debate on funding.
Where's the money going to and are we willing to financially support empowerment and our investing fight against ableism? Where's the money going to is very relevant.
Here we can have the power as commissioners, member states, and as Parliament.
So it starts from the very beginning that a person like me and I'm the only with a visible disability gets the opportunity to speak here in front of you on a level.
Thank you for your attention.
Thank you very much.
I will now give the floor to the Minister of State for Disabilities of Ireland, miss Emma Higgins, to present us the case of Ireland.
Please, Dear Minister, you have the floor.
Thank you.
Thank you very much, Madam Chair.
I think Ireland is a little popular at the moment because we're about to take on the EU presidency from our good friends in Cyprus.
Do an incredible job.
Empowerment of people with diminished capacity through supported decision making is a fundamental aspect of the UNCRPD.
We all know that.
We know that decision making capacity is vital.
I think at some level, we all know that decision making capacity is something that many of us in this very room will face at some point.
I suppose I'm asking people here to take a moment to think about that, to think about how important safeguards, rights, autonomy, dignity could become for you.
And to think about what Article 12 would mean to you in that situation, because that is the situation for so many people.
That is why we are here in the UN this week because of nothing about us without us.
Article 12 is legal capacity on an equal basis with others in all aspects of life.
That might sound legal, it might sound technical, but it's basically about equality and human rights.
It's basically about the fact that everyone has the right to make decisions about their life.
In Ireland, we've just passed the third anniversary of the Assisted Decision Making Capacity Act.
It was a landmark piece of legislation that officials in my department worked very hard to bring in.
And it's person centered, and it's about supported decision making and that model.
That's a key component of the UNCRPD that autonomy, independence, self determination, and what that looks like in everyday life and in everyday decisions, will and preference.
We know that capacity isn't static.
That's why there's tiered decision making within the act.
Our legislation also provides for advanced powers, advanced planning in terms of enduring powers of attorney and advanced health care directives.
But above all else, it's about people.
People are at the center.
Whether it's in terms of exercising their legal capacity, whether it's being able to make choices about their own lives, have their wishes respected, participate fully in society on an equal basis of others.
Advanced planning arrangements are underpinned by our guiding principles and they are grounded in human rights and of course, are limiting infringements on decision making autonomy of anyone lacking capacity.
It's been a very big transition for us in Ireland.
It has required as speakers before me, have spoken about legislation, guidelines, training, but it's also required a shift in mindset and a shift in culture.
Change ain't always easy.
We all know that, but sometimes change is necessary.
This is a change that was absolutely necessary.
We are still on that journey.
We continue to listen, we continue to learn, we continue to take on board feedback from our stakeholders, and that's why we've committed to a full review of the legislation, of how it's working, of its consequences, whether intentional or unintentional, because we're committed to continuing to improve that legislation.
We're committed to doing so by taking lived experience from stakeholders and by listening to feedback from other EU countries and other nations who have similar legislation.
That's what today is about.
Today is an opportunity for us all to learn from one another, to learn what Article 12 looks like in different forms and in different legislations in different countries, but to learn how we can all work together to support decision making and to support empowerment of people with diminished capacity Margrave.
Thank you, dear Minister.
Thank you for sharing the example of the Irish law, which many member states we follow as an example in front of us to make legislative reforms also in our countries.
I will now pass the floor to the representative of Peru, miss Olga Mercedes Villalobos Manic, Chair of the National Council for Persons with Disabilities of Peru.
Dear miss Manrik, you have the floor.
Distinguished authorities, representative of state parties, especially the representative of the Republica of Ss, Organization of persons with disabilities, panelists and distinguished guests.
It's an honor for the Peruvian state through the National Council for the Integration of Persons with Disability Coaris to co sponsor the Psi event and share our experience regarding legal capacity, independence, living and inclusion in the community.
In Peru, The recognizing of the full legal capacity of persons with disability on an equal basis with other has undergone a process of structural reform.
This process began with a legislative amendment to the Civil Code and the most significant legal frameworks governing private law and civil relations in our country and currently continues through the design, adaptation, and implementation of public policy instrument, I'm at operationalizing and consolidating this reform In the regard, I would like to highlight and presence three concrete advance.
First, we adopt there Legislative number 1384, which recognizes the full legal capacity of persons with disability on equal basis with others and establishes a system of supports and safeguard replacing substitute decision making arrangement previously known as interdiction and guardianship.
Second, this year, we took an additional step forward with the adoption of the Creo Supremo Number 12026, which amends the regulation of the General Law on persons with disability to incorporate the role of the personal assistant.
We are concur designing a pilot program on personal assistance and care service in order to assist this effectiveness.
Targeting criteria and interventional model.
In parallel, we have approved deinstitutionalization strategy through B Trena to guarantee the rise of person with disability to life independently and be included in the community.
We express our gratitude of the Republica of Ceres for this initiative and for promotion international dialogo, and one of the most relevant ensues for the effective enjoyment of the right of persons with disability.
Peru is commitment to continue to advance toward an inclusive society in which autonomy and support decision making become a relative for all person.
Thank you very much.
Thank you very much.
I will now hand over to the representative of Guinea, Mr.
Richard Boayer, Director of Social Development at the State Department for Social Protection of Guinea.
Mr.
Bossayer, you have the floor.
Thank you.
Thank you, Christina.
Distinguished guests.
Ladies and gentlemen, it's an honor for Kenya to participate in this important decision on supported decision making and the realization of Article 12 of the Convention on the Rights of persons with disabilities, which affirms the equal recognition of persons with disabilities before the law.
Kenya recognizes that the right to make a decision about one's own life is fundamental human rights and an essential component of dignity, autonomy and inclusion.
Our Constitution guarantees equal, non discrimination, human rights, and access to justice for all persons.
These principles have guided our efforts to strengthen the legal and policy environment for persons with disabilities and to advance their full participation in society.
The conversation on supported decision making is particularly important because it challenges traditional approaches that have often limited the urgency of persons with disabilities.
It reminds us that disability does not diminish a person's legal capacity.
Rather, it requires that appropriate support is provided so that individuals can exercise their rights, express their will and preferences, and make decisions on an equal basis with others.
In Kenya, we continue to pursue reforms that promote a right based approach to disability inclusion.
Through legislative reforms and reviews, policy development, capacity pooling, and collaboration with organizations for personal disabilities, we are working to create systems that respect individual autonomy while providing safeguards against abuse, undue influence and exploitation.
We acknowledge that achieving fully inclusive support decision making frameworks is an ongoing journey.
It requires coordinated action across sectors, including social protection, health, education, justice, financial services, and community support systems.
It also requires meaningful participation of persons with disabilities, and their representative organizations in the design.
Implementation and monitoring of these frameworks.
Today's side event provides an invaluable opportunity to learn from international experiences and best practices by sharing legislative innovations, service delivery models, and oversight mechanism that can collectively strengthen our efforts to ensure that persons with disabilities are empowered to make choices about their own lives and futures.
As we exchange experiences today, Kenya remains committed to advancing the principles of autonomy, self determination, and equal recognition before the law.
We believe that supported decision making is not only a legal obligation under the convention, but also a pathway towards more inclusive, equal, and just societies.
I look forward to a rich and productive discussion and to be valuable and the valuable lessons that will emerge from this exchange.
Thank you.
Thank you very much, Mr.
Bair.
I will now share with you the case of Cyrus.
Experience in advancing Article 12 of the CRPD.
Article 12 places, as we heard, an obligation to state parties to provide access to the support persons with disabilities may require to exercise freewill, make choices, and take decisions concerning their lives.
In Cyprus, we chose first to establish the framework and the mechanisms for access to support and decision making services, and then to proceed with replacing the existing guardianship system that we still have.
We considered as a priority that rights must be accompanied by practical support if they are to be effectively exercised.
In 2026, a new law was adopted in Cyprus after close consultation with the organizations of persons with disabilities, regulating a range of social services for social participation, inclusion, and independent living of persons with disabilities.
Among them is the service of the advisor for supported making.
Following a pilot program to test the nature and the content of the support service, the different individualized needs of persons with disabilities, and the ways how to respond effectively to these needs.
A project is now being implemented, co financed by the European Social Fund.
The project concerns a contract between the Department for Social Inclusion of Persons with Disabilities of the Deputy Ministry of Social Welfare.
This contract is between this department and the Cyrus Confederation of Disability Organizations and concerns the assignment for the operation of the supported decision making service in Cyprus.
30 supported decision making advisors have been recruited to date with a plan to have 80 in the following months becoming a new point of reference in the lives of persons with disabilities.
A priority is given for supporting persons with intellectual or mental disabilities.
The support includes, first of all, the creation of a relationship of trust and mutual understanding, and then the provision of support regarding gathering information in accessible forms of communication proper to the individualized needs, support in formulating alternative choices, support in decision making, support in implementing the decision, and recognizing and understanding the impacts, positive or negative.
Experience so far allow us to identify crucial factors for effective and meaningful supported decision making, which are careful and discreet assessment of the person's needs for supported decision making, together with the person, together with the person's family, together with the supporters the person may have in everyday life.
Then another crucial factor is that the delivery of service has to be made by qualified advisors with expertise aligned to the UNCRPD values and principles.
Professional supervision must be available to support and guide the advisors when needed and especially in challenging cases.
Defining clear boundaries in the professional relationship and cooperation between the person and the advisor is another crucial factor for success.
Finally, monitor and ensure that persons with disabilities are satisfied with the quality of the service and that they indeed exercise greater control over their lives is the most crucial factor of all.
Supported decision making advisors are one of the eight social services regulated by the new law adopted in Cyprus just this year.
Creating a holistic framework alongside social benefits aimed at ensuring full participation in community life and greater autonomy.
Other social support services in this law include vocational trainers, job coaches, job personal assistants, social assistants, sign language interpreters, family counselors, and independent living support professionals.
Nevertheless, our work is not yet complete.
While Cyrus has made substantial progress in creating practical mechanisms for supported decision making, the reform of the guardianship system remains an essential next step for us.
Draft law has been prepared by the Deputy Ministry of Social Welfare after consultation always with the disability Organizations Confederation.
We still face a number of complex questions to finish this important second law.
Responsibility for monitoring implementation so that to ensure full compliance with Article 12 needs to be exercised by an independent authority.
It's going to be the Office of the Ombudsman and Commissioner for Human Rights.
Extensive consultation is still required with a wide range of stakeholders, including the judiciary, the legal profession, mental health services, social welfare services, and all the disability organizations in Cyprus representing persons with disabilities.
We hope that in 2027, this second law will be finished and adapted to have a complete legal framework that is fully aligned with Article 12 of the Convention.
Cyprus remains committed to the principles, values, and obligations defined by the convention and to building a society where all persons with disabilities can make their own choices, direct their own lives, and participate fully in their communities.
Thank you.
At this stage, I would like to warmly thank Ireland, Peru, and Kenya for their interventions and I would like you to take your seats down and I would request doctor Sanya Karkzy on behalf of the International Disability Alliance, and miss Melinda Brown on behalf of Inclusion, Australia, please take your seats podium at this panel.
Let's see.
Thanks.
Thank you very much for your presence here.
Doctor Sonya Karsh, Vice President of the International Disability Alliance, please, doctor Karsh, you have the floor.
Thank you very much.
I will be signing in Croatia S supported with my deaf blind interpreter.
First of all, I would like to thank everyone for the invitation, especially the state of Cyprus and to congratulate you on assuming the presidency of the Council of the European Union.
As well, I want you to have a lot of success as you did so far.
I'd also like to thank the other countries representatives and partners and reaffirm that IDA, together with you will keep on advancing the rights of persons with disabilities.
To avoid redundancy and repeating what we've already heard, I still would like to mention or repeat some of the things that are particularly important and some key moments that can help all of us to be the change makers and to advance into newer and brighter future.
Now the question is not how to design the support services.
The question is how to convince the society, the lawmakers and the policy creators to trust persons with disabilities to be their own creators and authors of their own lives and existence.
CRPD is celebrating 20th anniversary and we are entering the third decade.
Still, one of the basic principles of UN CRPD is that every person has a will, preferences, and that every person has the right to decide on their own lives, and we need to keep on building on that basic principle.
We keep on forgetting that persons with disabilities are the ones to decide.
The law is not here to decide who is capable enough to bring their own decisions.
Persons with disabilities have the capacity to do it on their own.
CRPD also, especially the Article 12, cannot be respected if we keep on persisting on the systems of support decision making that we still have in many countries.
That we can see and we can feel that there are still so many misconceptions about human beings in itself in their own.
We need to remember that every person is independent, but that support is not opposite of decision making.
Because persons generally make decisions based on trust, on family, on conversation, on peer support.
I think that support also enables autonomy in many cases.
That's why I like to say that I as well, I have here my communication and mobility support in the form of my deaf blind interpreter, since she is my eyes and ears, and at this time, my voice as well.
But I want to say that I am proud to be able to state that I am independent in my own dependency and that is something to remember.
We are all dependent or something or someone, but that doesn't mean that we are less valuable or less capable to bring our own decisions and to decide about our own existence.
Since I am one of the persons who never reads her speeches, I am trying to follow up with everything that I wanted to say, but I will try to summarize the main points.
There are some very good examples that we witness in this area of decision making.
For example, Peru and Colombia, where they changed the concept of guardianship to decision making and support arrangements.
That's a big step and a good example to build upon.
Also, we have a great example coming from Ireland.
In Ireland, we can see that they created a system that supports co decision making and assisted decision making and as well representation, of course, with oversight.
We are all aware that there is no perfect system and that vigilance is necessary.
But we can see how it's great when you have architecture designed around capacity and decision making.
Also, we have an example of British Columbia where they gave capacity to persons with disabilities to be the ones to decide who are their trusted persons to support them.
They do not need professional distance systems to decide instead of them.
They do have the choice to decide on their own to pick persons that they trust.
That's a big and giant leap, I would say.
We can also see that the inclusion is important in these aspects of the institualization as well because the institualization is good, but we need to prepare mechanisms and systems of support for persons who are out of institutions.
If persons do not have jobs, do not have housing, do not have support or equal opportunities, then the whole system fails and the whole initiative fails completely.
Yeah.
I wouldn't take any more time.
But now the examples that we've heard is something that shows that change is possible and that we're going towards it.
But I wanted to emphasize that International Disability Alliance is committed to build up on these good examples and to keep on promoting it all over the world.
It is something that affects our lives daily.
And the measurement of success is when we see that every person with disabilities is really the creator and the person who decides for herself.
That is something that is the most valuable and that's something that we need to strive to.
We need to come back to our own personhood, lively and legally.
Thank you.
Thank you very much, doctor Tags.
Now we have with us Melinda Brown from Inclusion, Australia, on behalf of Inclusion International.
Melinda, you have the floor.
Thank you.
Hello, everyone.
My name is Melinda Brown and I live in A, South Australia.
Today I want to talk about supporting decision making and why is it so important for people with disability.
Supporting with decision making means helping people with disabilities making their own decisions.
It means listening to what the person wants and supporting them to understand information and communicating their choices.
The most important thing is respecting the will and preference, of the people, persons with disability.
Accessibility is a big part of supporting decision making.
People communicating in different ways.
I stack.
Stuck.
Some people use easy reading information communication cards, visuals, sign language, like this card as well.
Assistance technology, these tools help people understand information and communication with their choices.
In Australia, each state and territory has different laws about gardership.
I It's in South Australia, Gorship matters are dealt with by South Australian Civil Administration Tribunal.
We also have the Office of the Public advocate and the public trustees.
This is a government organization who can act as a person I mean, When they do not have someone in their life suitable to do this role, however, this should be the last resort.
Gunership orders can take away a person's right to make decisions about their own lives.
I have seen friends with disabilities have their rights taken away.
They have told me they feel frustrated and paous.
And left out.
Sometimes people will make decisions for them instead of with them.
As a society, we still have a long way to go.
For me, supporting decision making means people talking with me, listening to me, and helping me understand information.
It means asking me what I want.
It means supporting me to make informed decision about my own life.
What helps? People listen to me, people giving me time to respond, people asking me what I want, people explaining information clearly.
People talking honestly about Options and risk.
People involve me in decision that fits my life.
What gets me in the way? People rushing me, people making assumptions about what I can or cannot do.
People taking control instead of supporting me.
Not being given all the options and not being supported to build confidence and capability.
The barriers affect important parts of life, including health care, housing, relationship, work, and how people spend their day.
Last year, Australia completed the Royal Commission into the violence, abuse, neglect, and exploitation of people with disability.
The Royal Commission made recommendations to the strengths and in the supporting decision making framework in Australia.
This is an important step towards and I hope that the Australian government action on these recommendations However, people with intellectual disabilities must be involved in co designing future reforms.
True co designing means more than being invited to a meeting.
It means listen to, making meetings accessible and adding on what we say.
I have been lucky to have people supporting me throughout my life.
Because of that supporting, I have been able to break down the barriers and have opportunities like speaking with you today.
But not everyone gets the same opportunities.
Every person has the right to make decisions about their own lives.
People with disabilities are the experts in our own lives.
Before I finish, I would like to share a painting that I completed last year picture.
Before this artwork tells the story of my journey, overcoming the challenges and barriers throughout my life, the stairs represent the many barriers I had to climb, including learners and mental health, education, housing, employment, public transport, communication, and information and barriers to healthcare, the NDIS, supporting services, and accessibility and social barriers, and even the everyday challenges of having fun and being included.
Some states were harder to climb than others.
They took more time to strength and courage and healing.
What helps me to keep going where the community and the peers groups who taught me to speak up and gave me a voice, encouraged me to keep on climbing.
Even today, I continue to climb the stairs.
The barriers do not disappear completely, but I now climb them with more strength, awareness, and purpose.
My story shows what is possible when people are listened to, supporting and forgiving opportunities and thank you.
Thank you.
Thank you, Melinda, for sharing with us your lived experience and your story.
Thank you.
Dear participants, it seems that we have no time for interventions or questions from the floor.
So we proceed to the concluding remarks.
I pass the floor to miss Jong Sajaer, Assistant Secretary.
So for spelling your name, maybe most probably wrong.
Assistant Secretary-General for policy coordination from U and Tessa.
Please, miss Sanjao, you have the floor.
Thank you very much, Madam Chair and Deputy Minister Clea Pain, distinguished delegates and colleagues.
I have to say it's been a real pleasure to be part of this distinguished panel.
Thank you to the Cyprus presidency for bringing us together and for bringing these important voices here in the podium at the United Nations.
Thanks also for inviting Tessa to be part of this and for providing a few closing remarks.
I think we can agree that CRPD was a landmark when it was adopted almost 20 years ago.
It's been very important and having these kinds of conventions is important, but it is even more important that the commitments that are part of those conventions lead to real change in people's lives.
I would like to congratulate those member states that we heard on the podium.
I'm not sure there are some in the room as well that have made great progress on translating those commitments into change as we have heard about.
But we also know that there are challenges that remain.
We heard some of them here from the speakers.
And the challenges that we heard about have also aligned with the findings from DSA and from our analytical work that we do in support of the implementation of CRPD.
One persistent issue worldwide is the continuance of guardianship laws and substitute decision making regimes and the lack of supported decision making systems.
We've heard the importance of this in the panel here today.
We know that restrictions on the legal capacity of persons with disabilities is still being enforced in many jurisdictions.
We have found that those who are most affected are persons with intellectual or psychosocial disabilities, persons who are deaf, blind, or hard of hearing, persons with autisms, persons with dementia, women and girls with disabilities, indigenous persons with disabilities, and older persons with disabilities.
These practices are not in line with the right that all persons with disabilities have to be recognized everywhere as persons before the law.
Guardianship and substitute decision making regimes prevent persons with disabilities to enjoy legal capacity on an equal basis with others in all aspects of life, and that is in contravention of the CRPD of the Convention.
And this needs to change.
About 20 member states have already adopted laws or conducted pilot projects or partial implementation of supported decision making and the initiatives of those 20 countries are inspiring.
But we need to just take a moment to think.
If we have 193 member states, I don't think we have 193 and 20 states in 20 years.
I don't think we can take 193 years from the adoption of CRPD to really fulfill and realize the commitments that are in that convention.
So we need more political commitment, we need more concrete action to make progress on the implementation of Article 12 of the Convention.
On our part as DESA, we assist countries in the implementation of Article 12 through technical cooperation, as well as global compilations of data and analytical work that I just referenced.
This is available to guide the international community on where we are, but also on what needs to be done.
At this side event, we heard about good experiences and best practices that can be scaled up around the world.
It's very inspiring and let me end, Madam Chair, by reiterating DSA's commitment that we stand ready to support countries to further advance supported decision making.
Thank you.
Thank you very much.
I now hand back the floor to our Deputy Minister of Social Welfare of Cyprus, miss Hajstefano Bvalina.
Deputy Minister, you have the floor for the closing remarks.
Thank you very much, Christina.
Excellencies, distinguished delegates, colleagues and friends.
As we come to the close of this side event, I would like to extend my sincere appreciation to all speakers.
And participants for their valuable contributions and engagement throughout today's discussion.
We have had the privilege of hearing rich and diverse perspectives from national and international actors committed to advancing supported decision making in practice.
In particular, I would like to thank our colleagues from Peru Ireland and Kenya for presenting concrete experiences and best practices that demonstrate how different legal systems and policy environments can nevertheless move in a shared direction toward genuine inclusion, autonomy, and respect for the will and preferences of persons with disabilities.
These national perspectives have been further enriched by the important contributions of civil society and international partners.
I would like to warmly thank inclusion International and the International Disability Alliance for their continued leadership, advocacy, and expertise in ensuring that the voices of persons with disabilities remain central in global policy development.
We are also deeply grateful for the interventions and engagement of institutional partners, including the European Commission, the European Parliament, and the United Nations Department of Economic and Social Affairs.
Your presence here underscores the importance of sustained cooperation between global, regional and national actors in advancing the implementation of Article 12 of the Convention of the Rights of Persons with Disabilities.
Today's discussion has clearly reaffirmed a shared understanding.
Supported decision making is not merely a technical or legal reform.
It is a fundamental shift in how we understand autonomy dignity and inclusion.
It requires us to move beyond substitute approaches and to invest in systems that trust individuals, strengthen relationships of support, and enable persons with disabilities to exercise real control over their lives.
We have also heard that there is no single pathway to achieving this goal.
Different countries are at different stages of reform and different models reflect different legal and social contexts.
Yet, what unites all these efforts is a common commitment, ensuring that persons with disabilities are not passive recipients of decisions, but active decision makers in their own lives.
At the same time, we must acknowledge that progress in law must be matched by progress in practice.
Legal recognition of supported decision making must be accompanied by training, resources, awareness raising, and cultural change.
Families, professionals, and institutions all play a role in enabling this transition and in ensuring that support systems are truly responsive to individual needs and preferences.
As Cyprus presidency, we reaffirm our commitment to advancing this agenda within the broader vision of an autonomous union of values where human dignity, equality and inclusion are not abstract principles, but lived realities for all persons with and without disabilities alike.
The exchange we have had today is a strong reminder that progress is possible when we learn from one another, build partnerships, and remain anchored in the principles of the convention.
It is through such cooperation that we can move from commitment to implementation and from policy to meaningful impact.
Let me once again thank all speakers, delegations, organizations, and participants for your engagement and your continued dedication to this shared goal.
I wish you a safe continuation of your work at COST 19, and I look forward to our continued cooperation in advancing supported decision making and the full realization of equal rights for all persons with disabilities.
Thank you.
Thank you, dear participants for your presence here and now our side event is concluded.
Thank you very much.