The role of the private sector in creating inclusive care and support for persons with disabilities (COSP19 Side Event)

I think we will begin.
Thank you so much for being with us here this afternoon.
I see many colleagues from member states, from the private sector, academia, the UN family obviously in the audience.
So thank you so much for your attendance.
Very important week in light of the course taking place, but I will kick off and then we'll hand over to our esteemed panelists and moderator.
Excellencies, distinguished delegates, colleagues and friends, welcome again.
It is obviously a great pleasure to organize this event together with the European Parliament and, of course, our sister agencies, OCHR and UNICEF.
I'm from the ILO and obviously we are very much committed to disability inclusion in all areas of work and in line with the UN disability inclusion strategy and obviously the UN Convention on the Rights of Persons with Disabilities.
Colleagues care and support have featured prominently on the ILO agenda in recent years and will remain a priority going forward.
It is a key element of our transformative agenda for gender equality, which is currently being discussed at the International Labor Conference that's currently ongoing.
With increased public investment, the care economy can obviously generate a significant number of jobs.
However, ensuring decent working conditions for care workers is essential not only for their well being, but for the provision of quality care and support.
The focus of our discussion here today is on the role of the private sector and how it can and should play a role in advancing care and support of persons with disabilities.
In light of this, the ILO has been promoting disability inclusion through the Global Business and Disability Network for more than 15 years.
We've seen how the interest in disability inclusion has grown.
Last year, the network produced a report entitled Care to Compete, showcasing examples of member companies on how their care policies take into account employees with disabilities and those with care responsibilities for dependents with disabilities.
The report sets out a number of recommendations for companies.
For example, aligning care policies with workforce needs, which allows for better retention and productivity, increasing awareness among staff to maximizing the use of care policies by employees with disabilities and those with dependents with disabilities, empowering employees, including those with disabilities through inclusive workplace policy engagement, advancing equity in care for both employees with disabilities and those with dependents with disabilities, and supporting the well being and engagement of employees with care responsibilities.
Through this Global Business and disability network, we at the ILO have been actively raising awareness of the employment of persons with disabilities within the business and Human Rights agenda.
Against that backdrop, I look forward to hearing from obviously our distinguished panelists who are here with us today about applying the business and Human Rights framework in companies providing care and support to persons with disabilities, aligning care and support for persons with disabilities with the provisions of the UN Convention on the Rights of Persons with Disabilities, and ensuring decent working conditions.
And how that can be ensured for care and support workers.
I'd like to finish off by reiterating our own commitment to a disability inclusive and rights based care and support agenda.
I thank you and I look forward to a fruitful discussion this afternoon.
Over to you.
Thank you.
Thank you very much.
I will continue on behalf of the European Parliament.
My name is Leon Daon.
I'm heading the delegation consisting of members from three different committees.
We are, of course, also happy to be one of the organizers of this important event.
I actually thought I would start off with a quote from a representative from Greece that I got to hear this morning because I think you put it very well when he said that one of the challenges that we have is that although we have quite a good normative framework in place, or we lack a common understanding of what concepts such as inclusion and autonomy actually means in concrete terms.
The examples he used to illustrate this was actually different ways of organizing care and support services.
So I think the issue of human rights based care and human rights based support services for people with disabilities is really also at the core of how we can ensure that these concepts are also translated into reality in an equitable way.
A few points on behalf of Parliament.
Also, as you all know, the EU has ratified the UN CRPD and all of its provisions, meaning that also the recommendations from the committee, both the ones from 2015, the ones from 2025, are binding on all EU institutions, including also the European Parliament.
The CRPD committee recommendation on Article 23 suggests that the European Union provides guidance and encourage member states to provide persons with disabilities with self directed services in their homes and their communities and closely consult and actively involve persons with disabilities to their representative organizations in its implementation.
Very key recommendation.
The committee also recommends on Article 8 that the EU should provide persons with disabilities, parents of children with disabilities with adequate support to raise children in the community.
Families of persons with disabilities, amongst them as great majority of women are unpaid carers and support givers.
In the European Union, there is still a gender pay and pension gap, and a gender care gap, although especially even more vulnerable groups such as single parents.
S givers of persons with long term special needs, parents with disabilities or intersectionally need more than any other a job with decent working conditions.
You really also see the intersection here between the issues that are connected to decent working conditions and decent pay.
The 27 EU member states should have now implemented the working life balance Directive, also legislation introducing an obligation for employers for flexible working arrangements such as teleworking, extended sick leave for child with disability, et cetera.
The European Court of Justice has also ruled likewise, for example, in the Berbdi case.
Last but not least, discussing this topic, European Parliament is also currently discussing and negotiating the next EU mult annual financial framework, meaning the budgets.
So on one hand, I think you can say you have the issue and the importance of the normative framework.
You have the discussions we need to have on what these concepts such as autonomy, inclusivity actually mean in concrete terms when we talk about human rights based service and care.
And as the third point, also the question of financial support.
As we know that neither employers nor professional support services can operate to support persons with disabilities without the right type of financing, especially important when we talk about the non profit sector.
So looking forward to the panel and discussions here today, and I will first hand over to my dear colleague, misses Rosa Estras Farrakut who was also the lead negotiator on the resolution of the European Parliament's position on the EU disability strategy post 2024 and also the Gender Care Gap report.
Thank.
Thank you so much, Lee and thank you so much for the organization of this event, especially the International Labor Organization, European Parliament, Unicef, and Office of the United Nations High Commissioner for Human Rights.
The current debate is how to involve the private sector without replacing the public responsibility to warranty rights.
As you know, the legislature, we have approved two very important reports that place persons with disabilities and those who care for them at the heart of our policies.
It has been an honor to be the reporter of two reports that pure Care and persons with disabilities where they always should have been at the center.
First, the post 2024 European Disability strategy.
In this strategy, we reminded the need to guarantee truly inclusive education that protects children with disabilities from bullying, real access to the labor market with a job guarantee.
Paid traineeship and individual support, and fully accessible health services.
We have also called for accessible labeling on medicines and products products because accessibility cannot stay on paper.
It must translate into concrete price in the classroom at work and in daily life.
On CARE, this strategy calls on the European social Fund to invest in quality services and inflex tutor for persons with disabilities, super formal and informal careers with decent working conditions and contribute where possible to destitutionalization, to ensure that persons with disabilities can live in family or community community setting and adult care services or affordable accessibility and of quality.
The second report, which I call outsour with my colleague Eleanor Amelete from Greece is the European Care Strategy.
We have approved the groundwork for the European Care de annued by the European Commission next year and we have called for the alignment of the European Care strategy with the strategy for the rights of persons with disabilities 2021, 2030 to ensure inclusive, innovating and accessible care systems.
We have also called for a European care Stitute and European action plan to support single parent and vulnerable families with a focus on employment, housing, childcare, psychosocial support, and flexible working conditions.
Care has a woman's face.
That is why it's essential that member states fully implemented the work life balance Directive, which includes care leave, teleworking, and flexible working.
These tools are a necessity so that women do not have to choose between caring and working.
The European Care deal will be key to transforming the sector.
With a decent working conditions, fair wages, training, professional recognizing, we will not attract or keep the professionals we need more investment, more professionals, better condition.
Karen will require that those who care or also care for.
The European Parliament has taken important steps, but there is still a long way to go.
King is a right that must be protected, not a privilege.
Care must be placed at the heart of all policies because it's essential to building a favor, more dignity and more accessibility society.
Now is the floor of Facundo Chavez Penils, Human Rights and disability advisor.
Thank you.
Thank you, Rosa and colleagues.
I think it's a very good news that there is going to be a European day where we look forward to collaborating and also hopefully the International Day current support that was adopted here in the General Assembly can guide the work moving forward.
Um, colleagues, I have the role to moderate this panel.
We have great speakers today just to give you a little bit of a framing from the UN Human Rights.
We've been working on the care and support agenda for the last five years, we've been following international processes, intergovernmental processes, working with co sponsors on resolutions in the GA, Spain, Chile as the main co sponsors and also in Geneva, in the Human Rights Council.
One of the things that we feel that it's particularly important to pay attention to is to look at the role of the private sector.
The care agenda in itself, I would say it's leaving a little bit of a gap in the conversation of what types of services persons with disabilities need.
We are particularly concerned that the care agenda can multiply the investment without looking at the quality of services that persons with disabilities actually have been demanding for the last 40 years.
To guide that work and considering also that there's very little guidance on what these services should look like and how they can transform under a human rights perspective and from a CRPD perspective, we recently issued a set of foundational papers applying the guiding principles of business and human rights to the care and support sector, particularly looking at human support.
And so I think this leak can be something that you would like to explore in terms of how to move forward.
And I really want to thank and Colley for supporting our work in this line.
Without further ado, I'm going to introduce the panelists.
We have fantastic panelists.
On my right side, we have Marianne Hill, Glacia Ramos, who is the Executive Director at Women Enabled International, Alexander Kt, who is the Disability and Policy and Systems specialist in the global Program Division in UNICEF.
Ana Carla Pereda, I think we are missing a colleague.
And Javier Pasa, who is the Vice President of the European Association of Service Providers for Persons with Disabilities, and Giusepina Princi who's a member of the European Parliament.
I would just run straight into it and I will ask Marian Hell how do gender disability dynamics impact women and girls with disabilities receiving care and support as well as those providing it? And what concrete actions can private sector actors take to respect, protect, and fulfill their rights? And how can organizations of persons with disabilities support and guide these efforts? You have three to 4 minutes.
Thank you, all that.
Well, first of all, thank you for having us in this space.
I'm going to put my timer and I read some notes because I have, as always, about here a lot to say, but I'll try to be very concrete.
Um, I want to start talking about the context of care.
Care is a right.
It's a disability rights issue, a workers' rights issue, a gender, racial, and migrant justice issue.
At the same time, care has had a gender face because most of the people who care are women.
But at the same time, I have to be really honest.
There has been tensions around the care spaces, the care conversations around the world between what is care and support.
Without support, there is no care for people with disabilities.
According to the CRPD, there isn't.
So there's been a tension us being an organization that is feminist and it's in feminist spaces all the time, we get to see that.
That's a very important conversation that definitely can go further.
But I just need to mention it because from the disability movements and from the disability organizations and leadership, support has been something that we have to put on the center of the conversation.
When it comes to gender and disability, particularly women with disabilities, and We are the ones who live more gender based violence.
We are the ones who experience more sexual abuse than the rest of women in general.
That is definitely connected to care because most of the abuses that people with disabilities and women with disabilities go through is connected to people who care for them or if they are institutionalized as well.
Let's just remember that in the name of care wrongly, in the past, people with disabilities, even in the present still have been institutionalized.
I'll need to start.
I mean, I'll just put that context.
The second piece now talks about, particularly the private sector, but also recognizing first, sorry, that people with disabilities are not only subjects of care, we're not only subjects of care, we can also care for others, especially women with disabilities.
As we can do self care for ourselves, the three things around care.
Sometimes we forget that, and that is really important also in the conversations around support.
When it comes to the private sector, I'll talk about the impact in two lines really quickly.
The first one is there is a big responsibility and impact around economic and work inclusion because if there's economic and work inclusion for persons with disabilities, it's directly connected to care and it's directly connected to independence and autonomy.
That's one and that's a whole strategy that needs to be much more intentional in which we put it in place.
The second piece is everything around the regulations around private care.
We know and we push for the states to be responsible for care, but at the same time, they work directly with private care.
What needs to happen is those regulations, not only for people who are care workers, but at the same time for people that are receiving care in those spaces.
I think that is one of the biggest responsibilities because in the end, if private care in that line doesn't commit to anti violence protections and it's not creating clear enforceable standards for care providers as states, but also as private sector, we are in the risk of definitely not having support, of definitely living violence, of definitely not being able to recognize when violence is lived or abused in the name of care.
That is, I do agree with Tkundo that we cannot continue to have the care conversation without the private sector in place because they are now and they're going to continue to be responsible for much of the implementation of these care services.
And that might put us in risk even more if we are not very clear on the standards around the CRPD, but also connected to how we keep on pushing the support piece also so that people with disabilities are basically not left behind.
So I'm in time.
I'm going to stop there.
Hopefully I didn't forget anything.
Yeah.
Thank you.
Thank you, Maria kel.
And thank you also well deserved.
Thank you also just to remind us of the role of the private sector in the whole dimension, that it's not only big companies or multinational companies when we're talking about this, but also service providers that are organized as non profit organizations that can guide the way forward.
I would like to jump now to Alex and to ask you, Unicef has highlighted the importance of family and community based support systems for children with disabilities and their caregivers.
What role can the private sector play in strengthening these systems in a way that upholds the rights, dignity, and well being of both children and parent support givers? Thank you.
Thank you very much, A Kundo and thank you for inviting Unicef to this important event.
I would like to start by welcoming the equip package of OECHR.
I think it's a very timely package to guide us in this conversation on the role of the private sector in the core economy from a disability perspective.
I would like to first start by a quick sides coming back to what our colleague from Ayalo mentioned and highlighting the role of the private sector as an employer.
And the importance of family friendly policies that are actually inclusive of parents, often mothers, but also fathers, of children with disabilities, but also of parents with disabilities.
I think this is something like the rest of the care economy discussion.
So we don't put emphasis on that.
I think some progress have been made in this conversation, but more needs to be made.
But of course, I would like to focus more on private sector as a provider.
I would like to really highlight an important difference in context.
The conversation we have about EU is not the same conversation that we will have about Zambia, Rwanda, or Kenya, or Nepal.
The role of the private sector, though fairly similar, if we think about the diversity from non profit to for profit, differ by the type of engagement and the type of relation that exists with government.
I think if we talk about EU, we talk about the market.
We talk about regulation.
I remember some presentation where we are talking about care cube like in the UK, where you have an IT system that connect data to help commissioning the best possible offer.
We don't do that in Rwanda or in Kenya because the government is not nearly spending, not even the beginning of the type of expenditure that we see in the EU or the US or OECD countries.
The type of place of the private sector is very different.
Would like to maybe focus more on lower income economies and to see what does it tell us.
This is a place where actually the private sector is the primary and often the sole provider of formal care and support.
If we talk about support that is providing in the community or at the community level, government very often, from a human assistance perspective, are limited to investment that would be residential care institutions because it's often related to child protection.
There are reform in many countries trying to shift that.
I and what we see in those contexts is all this challenge on the continuum from a family group.
All the way to a massive NGO like BC in Bangladesh and everything in between.
The key question, I think for the government in many of those countries is how government can incentivize, regulate, support the private sector to do better and to actually propose and enhance the service for children with disabilities and their families without disrupting community dynamic, without proposing regulation that doesn't stifle innovation.
Um, and this is a challenge because I think government financing is not always very flexible.
We see some avenues, for instance, and the very importance of co producing those strategies.
For instance, in Kenya, the Department of Social Development has developed costed policy scenarios with OPDs with service provider thinking how we develop care and support at scale, knowing that most of it will be provided by the private sector in its diversity.
And what does it look like? I think we need to do more of this exercise in a very participatory manner, but also having scale in mind.
Because one of the things that we've seen repeatedly is pilots, pilots, pilots, pilots.
If you are lucky enough to be in a district where UNICEF or its partners or anybody else is doing a pilot, then as a child with disability and their family, you will get support from a private actor, maybe with some government support somehow, and if you're not, then you will get nothing.
I think one of the challenge is, how do we move from a private sector led provision with coaptation of government to a government led framework co resourced with the private sector.
Thank you.
Thank you, Alex.
I think it's very important point on bringing together, particularly in low and middle income countries, this dimension of cash transfers and personal budgets.
So the resources and the funding is there and we can be more flexible in terms of what type of arrangements we put in place in this particular context.
I would like to welcome Agatla Pereda is the director of equality and nondiscrimination at the European Commission.
Maybe pose a question in terms of the U has advanced important frameworks such as the European Care Strategy, the U guidance on independent living, and the European Disability strategy.
How come those initiatives we leverage and adequately financed to ensure inclusive community based care and support for persons with disabilities? Thank you very much and apologies for my late arrival.
I would like to, of course, congratulate you to have this topic for discussion because we do feel that disability inclusive care is one of the key principles at the heart of the convention and one that we hear is not so easy, in fact, to implement or the progress has not been as fast as we would all expect.
Now in the European Union, we have three main elements of the policy framework.
So that the policy guides investment and not the other way around.
You've mentioned them.
Let me just briefly say what they include.
The first one is really our European disability strategy that spans until 2030.
What we clearly say there in the strategy is that independent living requires a differentiated landscape of quality accessible, person centered, and affordable community and family based services comprising personal assistance, medical care, and intervention by social workers.
This means that through all these ecosystem, we should facilitate everyday's activities and give choice to families.
I think that's the centrality of the center of what we do is really the focus on choice.
Then we have translated these elements into a guidance document which really provides more concrete elements of how investment can follow these principles and this guidance a refers to accessible housing, personal assistance, community based services, the institutionalization, obviously.
But I think one important aspect of this guidance is that when we talk about care, this is not just about closing institutions, it's also making sure there is an ecosystem, and then there is a full range of services that are there because you need to have solutions in parallel to the institutionalization.
This is where defining policies and principles or where the new investment comes is really important and not so easy to make happen on the ground.
Now, the European care strategy is also very important pillar in this and what it basically does is to look at the care sector, specifically looking to care from the carer perspective, but also the recipient of care and acknowledging that there is a dimension around those who receive care, but also we need to have policies that support the working conditions of those who provide care and the policy framework and the policy investment needs also to be there because the carrier is very often the person who will be the closest to, in this case, the person with disability and is able to really give life to this notion of independent living.
We do see that the care sector in Europe is a gendered sector.
It's mainly women that work in the sector, underpaid, long hours, very difficult health and work conditions, and very often no structures of social dialogue where, for example, workers can come together.
This is a little bit one of the poor parents of the poor children of the economy in the EU because for very long it has been outside of the radar.
The European care strategy has the advantage of putting focus on the care sector and calling for attention.
In fact, hopefully the new wave of actions in this area will come to life through the European Care Deal, which actually the Parliament, who is one of the organizers of this event has been calling for and to which the European Commission has now committed.
And then finally, I want to mention our announced strategy that we had just adopted in May, because despite the guidance and despite this work that we have put forward, we do see that the progress is really a very slow.
A recent study just show that we estimate to have 1.4 million people in the not living in institutions.
I think that number itself should call for action, calls our attention.
This is why in the announced strategy that we adopted in May, we have announced the European Alliance for independent living.
Because one of the problems that we see is how we make the policy framework reach the ground.
How can these principles I've mentioned in this guidance be available to national, regional, local authorities and how can that then shape the investments at the local level? We see that in the EU, this is not yet really a reality.
That is the focus of this alliance that we want to put forward.
One final point, of course, all of this requires money.
We can't do really cakes without eggs unless you have a special recipe, which not most of us know yet.
But in the EU, we are currently discussing the next mult annual financial framework, which is a fundamental discussion going on at European level because it will determine how many resources financial resources and we will have for the period of the next seven years and how these resources will be distributed and to each objectives.
And so to us, the guidance that we have issued in October last year is not limited to one financial period.
To us, this guidance should apply also in the next mult annual financial framework.
But we need, let's say, the political discussion to make sure this is clear in everyone's minds and that is enacted in the texts so that then we can also pursue with implementation.
I'll leave it at that, and of course, happy to engage further later on.
Okay.
Thank you so much.
I think that the European Union has a big challenge ahead.
Also making the disability strategy, the care strategy to be working together.
The more, we've been engaging in this conversation just today and one of the things that we see a lot is that we're still developing strategies in parallel that operate in silos when we are looking at the care economy as a whole.
This dialogue between different strategies and it happens at the European level, but it also happened at national level.
This cross sector multi stakeholder logic needs to come together.
We are also discussing a new International Human Rights treaty on other persons that will bring a new demand, a new logic of intervention, and hopefully all of these spaces can come together for a comprehensive care and support systems that deliver for everybody.
Javier, I would like to maybe ask you to perhaps share some audio examples of practices or models where persons with disabilities and care and support providers actively shape, design, and evaluate services that respect the rights of both those receiving and providing care and support.
Thank you.
Thank you.
It's okay.
That's okay.
Thank you for the invitation.
Thank you to all the speakers as well.
I think it's really an honor to be among all of you also, Europe Commission, European Parament dialog and good champions like Ros in the area of disability rights.
Let me just say three things that for me are fundamental from the side of the European Association of Service Providers.
We've obviously focused on how the services are provided for already more than 30 years.
I would like to explain what is our framework as we see it also for private providers of care.
Some examples on what we think we can move ahead and also a methodology that we believe is useful to start analyzing the presence of the private sector in the care sector.
First of all, obviously for us when we are speaking about services, there are several issues that we think they have to be considered by private sector.
First of all, obviously, the high quality and rights based, and support.
It looks like obvious, but for many, many years, for example, person centered support has not been in the agenda of the provision of services.
We are also thinking that when we have new providers from private sector also coming into our sector, that maybe sometimes the person centered approach can be lost.
And obviously, the private sector approaches any activity based always on the standards, which is very good.
I mean, we need to work also in this compliance with the standards, but we need also to focus on the idea of the meaningful realization of rights, which obviously for the private sector is not also so obvious because they are used to work by standards and by the compliance systems and sometimes the meaningful realization of rights is not in the agenda on the way they develop their strategies.
For us, it's also important that we need to have an outcome focused and centered on quality of life.
Sometimes, as I said, for some areas in private sectors and the public sector as well, we have structures we have processes, but they need to be implemented and they need to be analyzed by live outcomes because sometimes we measure the availability and the support of the services, but we don't see how is the impact on the life of persons with disabilities.
For us, it's also a very important issue.
The last one It's obviously how to make sure that when you have private actors, there will be some participatory and co creation methodology.
It's not so easy when you are implementing services.
We know in the private sector in many areas, obviously, they count on the client experience.
But here we're speaking about a slightly different issue is how to make sure that persons with disabilities can really participate in the way the service is delivered, even if it is a private provider.
So for us, also some examples applied in the European Union and over also the European continent, we would me the institutionalization that are process in Greece, which are being really a good methodology to modernize, the way in which we can go out from services that were very traditional in Europe, for example, the institutionalization.
But also now we are working also with all the sector to see how we can get out of the guardianship model.
Going out of the guardianship model is a challenge.
We need to really work in how to make sure that persons with disabilities can develop their autonomy, the capacity to promote their will and their preferences in the way the services are delivered.
For example, in Scotland, also we have a social care, which is a self directed support, which means that the person can decide when and how the service can be provided to the person and they can even purchase services that they want to receive for themselves.
We also have, for example, the personal budgets that will not go into this discussion, but it has been also present and the partnership model, for example, using public procurement policies to make sure that also the private sector comply with some requirements to the public procurement systems.
Also, we need to think about the professionals So definitely we can mention, for example, in Austria, some strategies for working time reduction or for example, the social dialogue between employees and workers' representatives.
For example, in Flanders, they have made collective agreements that have improved the conditions for the professionals working in the sector, that have really improved the capacity because one of the problems we have in the sector is how to retain capacity to deliver good services for persons with disabilities.
And I finish just with a methodology that we believe is important.
This has been developed, for example, in France.
Where there are three ways in which you can analyze the delivery of the service, even for the private provider, the lift experience expertise, which is for persons with disabilities, just to deliver.
The experiential expertise, which is for families and informal carers, and the professional expertise, which is for the support workers and the service providers.
These three dimensions for us really can make sure that we can ensure that the private sector in these services will be in a way adapted.
I finish with one issue, which is a risk.
We have detected in the European Union a progressive systems, we call it baization of the care.
It is true that it facilitates the life of persons with disabilities and informal carers, but it is not for sure that they have the same quality standards.
We need to really pay attention to this new trend of having care services just on the spot for some hours, for some time without probably the quality requirements that are needed when you provide that type of services.
I stop here.
Thank you very much.
Thank you, Javier, for bringing these examples.
We see this happening all over the world.
Unfortunately, this commodification of care as a new source of money resourcing, I would say, that it's also providing an income for migrant workers and so there is a complexity to analyze attached to that.
And I would like to highlight your point on compliance.
Unfortunately, the large majority of services are attached to what we call a legacy of compliance where you are counting number of beds, number of workers square meters per institution, and so on, which is a trap because at the end of the day, if you need to compliance if you need to comply with those standards and your measurement systems are attached to that then you are always in the trap of keeping the same service provision and you have little or no room for transformation.
What we see a lot and we are in contact dialogue with service providers that they group with the convention.
We are 20 years into the work that we are doing.
And maybe they were practitioners at the very beginning of their careers, and many of them now lead these organizations.
They are eager to do the transformation that they want to do, but they are also facing all sorts of limitations in policy, in funding, and the transformation is really difficult to be achieved.
Um, I would like now to give the floor to Giusepina Priinci While I make the question, I will call on everybody to jump to Channel seven as she will be speaking in Italian.
And the question to you is, how can employers support can support givers of persons with disabilities and which European and or national policies are in place and if you can give examples on the ground.
Thank you.
I speak Italian, so please take.
I'm sorry.
I'm informed that it's Channel one for English Channel one for English.
Apologies.
Let's go.
Good afternoon, everybody.
Thank you.
Thank you for giving me the opportunity to give my contribution to you here today during this very important meeting.
I would like to thank you for asking this question because this hits a topic of great human and social importance, and this is also at the heart of my commitment, my everyday committee to the employment and Social Affairs Committee, which is chaired by our chairwoman today.
We also have the disability intergroup that I belong to in the European Parliament.
When we refer to the topic of inclusion of people with disabilities, we have to talk about a network that is made of people who are hidden but whose role is crucial.
We talk about the caregivers.
In Europe, there are almost 100 million people who provide assistance.
But if they're not supported by their employer, they risk being laid off and we know what the consequences are.
The EU has no competence on salaries and salary setting, but the EU is in charge of setting standards and that we have seen in the European strategy for the rights of people with disabilities.
In the strategy, we say that inclusion goes through the support of caregivers is enabled by the support of caregivers.
I come from Italy and in Italy, there are 7 million people who provide daily assistance and support to people with disabilities and not only with disabilities.
However, this burden of care is still heavily on the shoulders of women, mothers, wives and daughters and it affects their participation in the labor market and their economic independence.
The European Directive on work life balance was transposed in Italy by legislative decree 105 that goes that dates back to 2022, and it has strengthened the safeguards by extending leave, permits, and protections for caregivers.
This directive is complemented by law 104 that dates back to 1992, which is a pillar and it recognizes the possibility of caregivers to take leave and sets out facilitating measures for caretakers to provide assistance and care.
It is still today a crucial tool to support families.
However, the effectiveness of these measures depends on their practical implementation in the workplace.
There are many companies that support caregivers, and this proves how effective the directive and the law can be.
Many companies can support caregivers with flexible schedules, smart working, and flexible shifts.
This allows, for instance, caretakers to accompany a family member to medical appointments without having to give up their job.
It is also very important to promote a work culture that is attentive to the needs of families with caring responsibilities.
We can say the direction that we have taken is a positive one, but there's still a lot of work ahead of us.
We need to do a lot more work to make these tools increasingly accessible and effective.
We need to find a balance between work and care and this entails promoting social inclusion, supporting employment, and ensuring full participation in the economic and social life of persons with disabilities and their families.
Taking care of those who are caretakers is a measure of the development of society.
The caretakers are an invisible framework and an invisible structure that holds together society and health systems.
The commission sets out in its strategy that caretakers represent the silence structure that holds Europe together.
There's still a lot of work ahead of us, but we also have to take stock of the good things that we have already done.
Name Directive is an important milestone that Europe has given itself and its member states.
Italy has made a good step in transposing it, and I think it's very visible.
Thank you, everybody.
That's a relation subpoena.
Now we have a few minutes to maybe collect a few questions or comments from the floor and we will come back to our colleagues in the panel after that.
I have one, two, three, I would take a fourth.
Okay.
Let's take the three and then we come back.
Yes.
Hello.
Thank you and good afternoon to everyone.
My name is Benjamin Drawn.
I am a 17-year-old high school student from New York City and the Director of Educational Services at a youth led nonprofit autism Without a voice.
Much of today's discussion has focused on the responsibility of the private sector.
However, many of tomorrow's employers, executives, and business owners are currently sitting in high school classrooms.
So before my question, I would like to make a brief observation.
As a young person, attending these discussions, having the opportunity to engage directly with leaders, policymakers, and experts is incredibly meaningful.
I believe that creating more opportunities for youth to participate in conversations like I am right now is an extremely important step towards building a more inclusive future.
My question is simple.
What role can the private sector play in helping young people understand disability rights, inclusion, and community based support now so that the next generation enters the workforce already prepared to build more inclusive businesses, workplaces, and communities.
Thank you so much.
Hello.
My name is Hiroshi Ton.
I'm here as a representative of the CRPM, a member of the committee on people with disabilities here to celebrate the growth of this program.
I believe that in the future, As we take care of business and on the topic of private sectors and further investments in civil society, I think that one place we need to arrive at is where people who themselves have disabilities are able to operate in managerial positions in these businesses and leadership roles.
I think this is necessary.
My question is, if you agree or disagree or how you see that working going forward of having representatives, in leadership roles in business and how we can preserve people with disabilities human rights in those spaces.
I think it's a necessary investment to have persons with disabilities in those positions.
Our committee always says nothing about us without us.
And so I hope that that can be carried forward through the private sector and persons in managerial positions in businesses.
The question is if you are in agreement or disagreement with this line of thinking.
Thank Do we have any other Yes.
Go ahead.
Sorry.
Hello, everyone.
My name is Jacqueline Neduk.
I'm the Global Alliance for Care where the first multi stakeholder platform working with everything related to care.
Many of the people in the panel are a member of the Alliance so we are glad to be in this panel.
This conference and this panel reminds us that it's time to ensure care support systems that enable people with disabilities to participate fully in society, enjoy equal opportunities and exercise their right to care for others, be careful, aloize self care.
We need to remember the role of women with disabilities receiving care, but also as care providers and the role supporting their families because in this way, they also support societies.
This is the way we need a new paradigm transformative vision capacity building societies that recognize the centrality of care, guarantee the rights of carers who are providers and also receivers as you mentioned.
And also to remember the framework of five arts who also remember we need to also require caregivers and care receivers, but also not only in an economical way because also when we change from narrative, we also come to build the infrastructure and care is a social infrastructure and we need today to remember that.
My question and comment, that's how to really support the private sector to change narrative related to care.
Because also we know women with disabilities, for example, they are also caregivers, how support those people who need to have special attention to back to work, to have a work in the same conditions and other with social protections.
Can we recognize this work to change narrative and to work together? The alliance also reminds us that we can work in alliance and we are here to work with you.
Thank you.
All.
All right.
Can you hear me now? Okay.
Hi.
My name is Brittany Palmer.
I'm the managing partner at Adaptation Ventures.
We're a very early stage venture capital firm focused on investing in disability, neurodivergent and accessible tech.
I really appreciate your comments here around the private sector today.
My question is related to the financial opportunities that come with helping people live independently and whether in the papers that you've written and the guidance, it takes into account the financial benefits to countries and localities of providing assistive technology.
From what I understand, there's a nine X economic return on assistive technology.
So in putting funds towards assistive tech and independent living, have you considered and have governments consider the economic benefits that it will bring back to it.
Thank you.
Thank you, colleagues.
Since we have some ten to 15 minutes, maybe I can come back to the panel.
I'm sorry, I'm going to just allogate the questions, if that's okay with you.
The first one that it's role of the private sector, what the role the private sector can play for youth in terms of informing on the rights of persons with disabilities.
Maybe I can give the floor to Alex and to Marian Health to briefly reflect on this point.
Thank you.
Thank you.
As you were speaking, one of my first reflection was, I think one of the biggest thing would be how, High school students can witness in their daily life over high school students with complex needs actually participating in school.
When you look at the data, you see the drop between primary, middle school, middle school to high school and this drop is accentuated for children and youth with complex needs.
I think that for me, this is how the private sector, the NGOs, the the government working together.
I think this is the best way of doing it.
I think having this experience of seeing, I lived it in my own life and it made me the professional I am, which is sharing lives and moments with people that are using personal assistance, not one but two or three, where I can see their parents struggling to manage a small entreprise of support and get a sense of what it takes.
I think this would be for me the Um, and this is something that the CRPD has been saying, which is how inclusive education itself create this element.
Another thing I think which is very important is internship is the possibility.
We have plenty of young people that want to be working in the care economy.
You have plenty of young people that start their career as personal assistants.
What does it mean? What does it look like? Having this opportunity with private sector companies that are in the care economy to actually welcome high school students to basically see what it looks like and maybe giving them a sense as they go through their studies of what they want to see change in this industry to be more responsive to the needs of young people.
That would be some of the few elements.
Okay.
First of all, thank you for being here.
It's so important to see young people in the spaces.
I was young once, I think I will say that I think there is a big power, and I agree with those ideas, definitely, but there is a big power in organizing as young people.
It's really powerful.
I think your question was also related to how can private sector be influenced in what we know? I personally see a big disconnection sometimes or most of the time between the global spaces and then the local spaces.
Imagine high school students that actually want to create change or influence other actors in society.
Sometimes there is a disconnect between what the CRPD is and then how it actually implements or what it means to live with a disability or live with any other condition, autism, et cetera.
I feel like there is power in mobilizing as young people, but also there is a lot of power around narrative change and how you guys are seeing it, how this actually CRPD impacts you or not.
When we're talking about care, these are the things that I think private sector can be influenced by saying, okay, yes to all of that.
But the reality for us as young people is this, or the other way around.
Us as young people, we're seeing this, that you private sector aren't necessarily implementing or seeing.
I think, like I said in the original message, particularly when it comes to care two things.
One is the opportunity that it has to include in the economic spaces because everything is connected to care.
But the other part is the responsibility that private sector has within the communities that they make money from.
Right? And I feel that whether it is in the care spaces or whether it is in any other services or products, the disability narrative sometimes can be not the correct one that is completely aligned with the CRPD.
So I think there's big things that young people can do with not so young people, and at the same time, the power that you have for mobilizing and influencing, I think it's bigger than you guys think.
Yeah.
Thank you, colleagues.
I would like maybe to direct the question on managerial roles for persons with disabilities to ILO, if that's something in that you would like to engage on.
We'll move on the narrative later with Javier and Ana cara.
Do you mind if we come back to that question.
It's fine.
Yeah.
It's basically what the colleague was saying is do you think that it's important that persons with disabilities perform managerial roles and his core question was if these would be in agreement with the panel? I mean, absolutely.
We are a very good example of an institution that recruits persons with disabilities, particularly in leadership roles.
I think the key point for me is that ultimately persons with disabilities should not be seen as passive recipients of support.
They are certainly innovators.
They are leaders, certainly workers in the ILOs example and institutions, governments, as was noted before, the private sector, we all have a role to play and certainly responsibility in ensuring that we remove the barriers that hold that potential back.
So I would certainly agree with you.
And sorry for having you repeat the question.
Thank you.
Anna Javier, if you agree, I would like to hear what are the ideas that you may have in terms of how coming from the Global Alliance for Care, how we can bring efforts together in terms of supporting the private sector into getting into not only a practice, but it's looking at the care and support systems, but also on building a common narrative along these lines.
Mary Javier, you're going to start.
Thank you.
Let me just make a small comment to the previous question because I'm coming from an organization called Onsen in Spain.
Onsen Spain is a socioeconomic group where we are 80,000 employees.
We are the third e in Spain.
We also have a group of companies of more than 43,000 employees, and more than 95% of the managerial structure are persons with disabilities themselves.
So it's an example of how you can really rely on managerial roles for persons with disabilities and be a successful socioeconomic group.
And I invite you to go and to get into more details.
And, you know, out of these 80,000 employees, 60% are persons with disabilities.
So it's also an example of how to employ directly persons with disabilities and be so far a successful model.
So definitely I completely agree.
I cannot do otherwise with your comment.
And my second comment about the narrative, definitely for us, for example, also in Author Foundation, we have a mechanism to promote employment of persons with disabilities in the labor market in the private sector.
And for us, one of the key issues is how to focus on the talent of the person.
I know it's a very common ground for many discussions to discuss about this, but it's not so easy to put into practice a mechanism that is working just exclusively in the talent of the person to be employed in the market when the market is requiring that talent.
So the narrative should be around that.
It's something that is not so easy to find in all the countries or not even in Spain, you know, where sometimes the labor opportunities and employment opportunities for persons with disabilities are based on more, let's say, human feelings or just to call it in that way, than in the talent and the professional capacity of the person.
So we need to insist on that narrative.
We need to really work on that narrative to be real.
And I think this will be the only way to make sure even in the care sector where persons with disabilities, our colleague was mentioning that, they also have an important role to implement and to develop, but we need to start our narrative from that point, at least from our perspective.
Thank you.
Allow because when we talk about care and we talk about who gives care and care services, I think the landscape is actually quite differentiated.
At least in Europe, we have obviously public investment, but this public investment is often delegated to a to non profit organizations, for example, or other types of foundations.
There are intermediates there.
We have private companies providing care services, and of course, we also have informal carers.
I think the narrative cannot be singular to one of one of these aspects.
It does need to bring all those aspects together.
When it comes to providers of care services, I don't focus on informal carers, just really those that have organized services, I really think that it is important to acknowledge the social function of care services.
You have many companies who look primarily for profit, in the sector.
But as any social service, there is a higher function in the provision of that service.
I think this needs to be part of the narrative that providing care to a person is not like having a profit when you buy a chocolate and you do a top up.
It's not the same business intention is not the same business objective, and this needs to be part of the narrative to care providers and companies.
That is one thing and the public intervention there is essential because as it was mentioned, it is necessary that this work is regulated, there are standards, and that the private actors abide to certain rules that are not purely a supply and demand rules of the market, but we acknowledge altogether with the public authorities that there is a social objective that is part of the relationship.
When it comes to informal carers, I think that it is really important that there are also conditions to make the life of caregivers more compatible with their different dimensions of life.
We have, as it was mentioned, what we call the work life balance Directive in Europe, which for the very first time acknowledges and gives the right to a carer's leave, but it doesn't say how long and it doesn't put an element of compensation.
You have a right, but in fact, it's not a paid leave.
I think this is one area where we can do more.
We also have a very important landmark case from the European Court of Justice that explains that the rights of persons with disabilities, again, gives protection against indirect discrimination.
That means that parents of children with disabilities should also be protected with reasonable accommodation and the right working conditions.
I think this is fundamental, is a landmark case showing that the family or whoever is providing care needs also to be protected because as it was mentioned, it is not easy to combine every dimension of life and many people end up giving up their jobs, for example, to focus on the care because it's not compatible.
I mean, the day has 24 hours for everyone, I think.
I would also like to come to this very important point where the care that is provided very often by informal carers is now being organized and used for business by platform.
That was what Jaime mentioned.
I think this is a very important issue.
We have in the EU the Directive on platform work.
I know that when we discuss about this directive, we mainly think of the riders and and the carriers, but it actually applies also to care.
The rules are there to protect everyone who would be subject to platform work regardless of the sector.
I think there is regulation that is there that helps.
It is incipient, we need to acknowledge, but these are very important steps.
The final point, if you allow me on the narrative, is to say that there is, of course, interest that informal care is not substituted by professional services.
Why an interest in terms of public finances? Because obviously, if you would substitute that with services, that has a price tag on public finances.
It is much easier in a way to call on the wife, because this is mainly women, the wife, the daughter, the sister to do that.
But one of the things we need to move on the narrative is that this is not cost free.
In societal terms, someone is bearing the cost, which is normally women.
The question is, is this cost being well shared across? I would argue there is more for public policy to do and take their cost on board.
Thank you.
Okay.
Thank you, colleagues.
First, I would like to thank the S language interpreters for going over for a couple of minutes.
I don't want to leave the last questions unattended, but it's actually based on what Anna just said.
Assistive technology, it's been recognized in two regional declarations in Latin America for the Regional Conference on Women and as a time saving technology, is the technology that it's available to reduce the time that particularly unpaid care workers are investing on providing support to their loved ones.
That number doesn't exist, to be really honest, there is no quantification of there is You have a number nine to 19 to one.
That's the level of compensation that you receive on that size.
What Anna was saying, which is some women particularly are paying for the reproduction of our societies with the work that they do disproportionately compared to men.
This is something that needs to be valued recognized and valued and rewarded to move ahead.
We have no further time.
I would like to thank everybody.
Thank, of course, the colleagues in the commission and the Prament for organizing this event, and the ILO for facilitating their participation and leading on this work.
Thank you all for being here today.
I think a big applause for everybody, all the panelists that we have would be the perfect way of closing.
Thanks so much.
Thank you.