>>: Good morning all, can you hear me okay.  Good morning everybody, welcome to day 2 of this summer school.  Today we have two very, very interesting panel discussions this morning and we are going to focus on voice, choice and community for disabled young ‑‑ for disabled children and young people.  I am going to introduce the panel members as we go, if that's okay, I will introduce myself maybe to begin with.  I am Colm Ó Conaill, head of Disability and Youth Division in the department of community equality disability integration and youth.  It's a bit of a mouthful, we have quite a large mandate in the department.  What's of note I guess is that we recently took on this Irish Department of Children equality and disability has recently taken on responsibility since last March for specialist community based disability services, and we obviously had a pre‑existing mandate in relation to a cross government approach to disability, equality policy.
That's enough about me.  I am going to as I say introduce in a bit more depth the panellists as we go.  But our first panel member, we are going to have three presentations in a row from Clíona, Ellen and Petra on the first panel.  Our first panel is going to consider equal recognition before the law.  So the panel will explore the application of the right to equal recognition before the law to children and young people with a particular focus on maximising their autonomy, opportunities to access support, and innovative practices.
Clíona by the way, maybe you were congratulating her yesterday, recently a doctor, she is a post-doctoral researcher here at the Centre for Disability Law and Policy at the University of Galway, and her presentation, which she is now going to make, will focus or pick up on some aspects of her doctorate.  So without further ado, I will hand over to Clíona de Bhailís for a presentation for about the next 20 minutes or so, and then we will move on to the next two panellists in order and we will then have open questions from the floor, and from those watching by Zoom at home or in your office.  And we are looking forward to a very good discussion on this topic.  Clíona.
>>:  Thank you Colm.  Good morning everyone.  So as we have just heard we are going to discuss equal recognition before the law, and very specifically I think a lot of the presentations that you are going to hear are going to think about how children and young people with disabilities can be involved and respected in decision‑making about their lives.  So I am going to try and set the scene a little bit with my first presentation.  I am going to talk to you about the articles that talk about this in the Conventions, what they mean and how maybe we can interpret them, because as you have heard, I have just spent about four or four and a bit years thinking about this in doing my PhD, and trying to examine how that might apply to disabled children and young people.
We have already heard a bit about some of these concepts yesterday from Bronagh and from some of the questions that we had and some of the morning's sessions and indeed from our keynote when we talked about guardianship in the form of the various (sound distortion) you will already have heard concepts such as legal capacity, self-determination, and even some of the articles ‑‑ (overspeaking) ‑‑  the Convention on the Rights of Persons with Disabilities.  Like yesterday, I will do my very best to cut down on the acronyms, but those two might slip out of just practice and over use at this point.
What I am going to do now is I am going to start by explaining some of those concepts in more detail and in particular one that maybe we didn't get an awful lot of time to talk about.  That would be Article 12 of the CRPD.  It's on equal recognition before the law, but I suppose the elements of it that we would think about quite a bit are the aspects that talk about the persons with disabilities should enjoy legal capacity on an equal basis with others and some of those aspects.  Essentially legal capacity in this way means that they should have the decision ‑‑ the right to make decisions which have legal consequences and ... 
(there is another voice coming through on the Zoom call and I can't hear Clíona clearly ‑‑ I can hear you, but someone on Zoom is speaking over you.  So if everybody on Zoom could go on mute please.)   
>>:  We will try this again and hopefully the sign language interpreters will wave me down!  Also hopefully you won't have to wave me down if I speed up teach.  I often get that with sign language interpreters and captioners too!
So what I was talking about was Article 12 of the CRPD.  Article 12 stands for equal recognition before the law, and in particular, one of the aspects that we are going to focus on this morning is around its decision‑making or the legal capacity element of it.  And it says that persons with disabilities enjoy legal capacity on an equal basis with others, and this is because or as a result of I think for many years and still as we heard yesterday in presentations from our keynote and many others, that disabled people were denied this right and continue to be denied this right for a whole host of different reasons.  That can happen just because a person is disabled in a particular country that their law is written or set up to deny them automatically those rights.  It can happen because they are viewed as making a bad decision or something other people don't agree with, and then cases are taken or moves are made to make sure that they are denied that right.  Or because a test is carried out and they're analysed and found not to have enough mental capacity or decision‑making ability as other people, and this will impact some people with certain types of disabilities or impairments more than others, or that's what we have seen over the years.  So you might be more likely to face this test if you have a cognitive disability or if you have a speech or communication impairment and you can't articulate yourself, then you are, if you are somebody there shouting about rights like I am currently in the front row of an auditorium.  That doesn't necessarily mean that everybody would not ‑‑ couldn't be subject to some of these tests.
What Article 12 then came about and the CRPD clearly states that they have legal capacity on an equal basis with others.  And then on the first General Comment that the committee wrote, and a general comments is a document that the committee writes which explains in more detail the content of the articles and what they mean by them, and what States have to do to make them happen.  So the General Comment that they wrote on Article 12 stated that it denial of legal capacity which is either discriminatory in purpose or effect have to be denied.  So you have to get rid of all of these mechanisms if they are discriminating or could discriminate against disabled people.  So we are thinking about the ones that I have just talked about there.  Are you going to be tested or face the test if you have a cognitive disability for one of these things?  In which case is that not discriminatory.  Are you more likely to have your decisions questioned or the status idea?  All of these different types of ways to stop people making decisions have to be removed under Article 12.  And instead, what we should be looking at is instead of making a ‑‑ appointing people to make decisions for other people taking away these rights and appointing people under substituted decision‑making is what the Committee calls them, we should be supporting people to make decisions, giving them access to support, recognising that we all turn to somebody else at various points and ask for help, making things accessible and recognising the types of support and who we might want to support us in those ways.
So that's what the General Comment on Article 12 says in a very whistle stop tour.  It says that we should be supporting people to make decisions based on their will and preferences, so basically what they would like, their overall picture of a good life, their likes and dislikes.  And instead of stepping in and making decisions based on their best interests.
What we don't know yet, or what we are not very well aware of is how this applies to children and young people.  There is a short paragraph in the General Comment that says that States parties must examine their laws to ensure that the will and preferences of children with disabilities are respected on an equal basis with other children.  Okay.  How does that work?  Exactly!  What else do we do with that and how do we apply that more generally?  I started to think about this for my PhD and going okay what does that mean in more detail?  And how do we balance some of the contents that we have in other areas that Bronagh will have talked about yesterday under Article 7, with some of these aspects.  So to start with, I think if we just look at when there is a decision in law.  When there is a rule set out in law about when somebody can make a decision.  This might happen in certain countries for a whole host of different reasons, but one of the most common ones that at this thought about when I was think ‑‑ one of the common examples that I think is helpful to think about is if somebody has age set out in law for when you might consent to medical treatment.  A lot of countries might say at 16 somebody is allowed to consent to medical treatment.  But you are usually an adult in that country and allowed to make most other decisions at 18.  That's a rule that applies to children and young people, because they are a child still, under 18, but it's a decision that the law recognises that they can make at that younger age.  And for me, I think the way Article 12 is written and the way this statement is made in the General Comment, it's very clear that that then means that we can't apply these tests that are unfair if we think they're unfair for adults, we shouldn't also be applying them to children and young people at those stages.
So what we should be saying is if age is set out in law, that should apply to all children and young people who that might apply to.  That age limit should apply to all of them.  We should not be going but you can if, you can if you can pass this test, you can if you can reach this certain challenge, or you can if it's not something we consider a very bad decision and therefore we are going to take away your decision‑making rights.  There are some other aspects of that with best interests which I will get into a little later if I have time.  But in general I feel that is one of the criteria.  If that's applied for one group of children, then it should be fair and not discriminate and not be applied to all groups of children in line with Article 12.
We should also make sure that these groups have access to support and that we are doing this and helping them articulate and make decisions based on their will and preferences and figure out their will and preferences at that stage.  So if we don't automatically presume that ‑‑ we don't always know exactly how ‑‑ what supports we want or need in different situations, so people should have chances to figure out what that is, especially at that age.  But it should also be something that we do ‑‑ that we give people chances, that we have opportunities to bring somebody in with you to that appointment at 16 if that's what you want.  That you have opportunities to have accessible information if that is the support that you would prefer; that there is different ways and measures that we can put in place to make sure that is accessible for people.
Those are the age limits set out in law.  But many decisions that we make at that age don't have set criteria set out in law.  There is not often ‑‑ there might not be a structured idea where we are like and this exact age there is a very clear rule in law.  And what do we do in those situations?
Well, that is where the other thing we heard about yesterday, Article 7 of the CRPD comes in.  Article 7 of the CRPD says that States parties shall ensure children with disabilities have the right to express their views freely on all matters affecting them, their views being given due weight in accordance with their age and maturity on an equal basis with other children and to be provided with disability and age appropriate assistance to realise that right.
There is a lot in there, I am going to break it down in smaller chunks if we can.  It's essentially going that even when children don't have the authority maybe always to make the final decision like I have just talked about, consent and medical treatment in some of those areas, or that set age limit set out in law, that still doesn't mean they don't have a right to express their views or participate in decision‑making and to influence what is happening and tell people what they think.  So they have the right to express their view freely on all matters affecting them.  And their views then, what they say then should be given due weight in accordance with their age and maturity.
It is on all matters affecting them and as we heard from Bronagh yesterday, it is dropped the language that we saw in the CRPD of capable of forming a view.  So it's no longer contingent on people having enough capacity or being capable in one way or the other.
They also then have to have their views being given due weight.  Now we don't have any more information immediately from the CRPD committee on this, but we do have a number of authors and articles on the CRC committee and different things that I drew on to figure out what this might mean and how this would operate in practice for children and young people with disabilities.  And finally one of the other ‑‑ the most important element of this, I think the interesting addition to this at the end was to be provided with disability and age appropriate assistance to realise that right.  So for that, if we think back to the idea of support, we are bringing that back in here again.  We are not presuming that people will just get on with this.  Okay you have it, off you go now, good luck.  We are recognising that people are interdependent.  That sometimes we might need things in a more accessible way, that we turn to certain people, that we have to change the way we sum up and do our practices to make sure they're inclusive and accessible so that children and young people with disabilities have the same opportunities to do this.
I think when we read this and we were thinking about how this would work, that it means if you read this in the same treaty as Article 12, it cannot include capacity assessments.  It wouldn't make sense for the two sets to work together within the one major treaty.  But it does include ways that ‑‑ how do we get this operational?  How does this make sense if we are thinking about it, what is due weight and how all of that worked?  In doing this, drawing on some of the information I gathered from the young people in my study, and the other information that was available from the different treaty bodies, and various authors on the idea, I developed a 3 stage process or a model for how this might be done.  I called it the ask, listen or interpret and respond idea.  And it builds on some of the work of Professor Laura Lundy who has done an awful lot of work on this area of Article 12 of the CRC and how that might apply to children and young people generally and the steps needed for that.
But also drawing on Dr Joe Watson's work with people who use unintentional or non‑traditional I think is some of ‑‑ there is different ways of describing this, communication.  And I don't know that there is a preferred term, but if you have one or if you think of different things, I would love to hear it.  But when I am thinking about this cohort, I am thinking of people who don't maybe use symbolic language, who don't always use speech or write things down in a way that everybody else would understand.  Maybe even they don't have access to assistive technology all the time to help them to do this.  So they might be relying on gestures, vocalisations, body language and people just who know them really well to figure out what they think.  And I think they should also need to be included in all of these ways and if we are thinking about it.  So I drew on some of Dr Watson's work and went how do we mesh these things together plus the findings I have from the other things to create an idea to make sure every young child and young person gets a chance to express their views?
It starts by asking them: ask is the first step.  And by ask I mean that we acknowledge that every child has preferences and views.  We start from that basis.  We are not saying I am sorry they don't communicate that way, I am sorry I can't understand what they mean and excluding some children.  We are looking around and going everybody has things they like and don't like.  Everybody has ‑‑ we can always figure out something from people.  We can always do that sort of work.  And we start from that.  We acknowledge that absolutely everybody has that.
Then we make sure that we are creating an environment which is suitable and accessible.  We provide them information in a way that is accessible, and we really think about how we can structure this process to support them to take part.  Then we actively seek their views.  It's not good enough for adults to chat amongst themselves and say sure they were there, they could have spoken up, they could have said something.  We have to think about how often children and young people, disabled children and young people have not been asked, and how they might not want to jump up and down go but me, but me, but me!  Because they aren't used to being asked in some situations.  Sure that came out in some of the people in my research who were like, sure they weren't going to listen to me anyway.  So we have to make sure that we are actively seeking somebody's views.  Of course participation is a right.  It's not a duty.  And some people might go well I don't want to take part in this exercise, I don't know anything right now.  But I think we need to make it accessible and give them the information and give them every chance to take part.  And also often when we think about that right and not a duty, I think we think about large scale consultations as if we were taking part in a big survey in this room.  And not about what do you think about that school that we were thinking of going to, or that surgery that was going to happen or something that is deeply personal and individual to the person?
After we have asked, then we need to make sure that we listen.  We actively listen to what they are saying.  We don't listen and go well I think they mean something else, it suits me better anyway.  We actively listen and engage to what the child in front of us is saying.  And we carefully observe and interpret if they are using non‑traditional communication.  And that's where the interpret comes into this.  It's not enough to say we are just listening and well sure they're not saying anything and dismissing it.  We have to be careful.  We have to observe and interpret.  And by interpret there, I am very clear about reading what we think they mean from what we know about them using communication passports, building pictures of people who know and love them to develop what they're saying and not interpreting something through very adult lens and making up our own ideas about this suits us better.  It's very much what the child is doing.
And finally, we have to respond.  We have to make sure that we are giving due weight to what they are saying based on their age and maturity.  So we have to ensure that they have some influence over the decision, and we explain to them what that might be and how the process will work, and we respond to what they are telling us.  And then we are applying this idea of due weight or age and maturity in a way that very much maximises their autonomy.  Like I said, capacity, age, all of these things for disabled people have been used over the years to minimise their say so in their life.  I don't think that's what they should be used for or what maybe they were even originally addressed to do.  So Laura Lundy in some of her work says they were generous and broad interpretations of these things were the original ideas behind some of these for the CRC.  Why not do that in a way that maximises a young person's autonomy and starts from that thinking.
If we are looking at age, are we looking around and going ‑‑ what decisions are other children doing at this age and are we making sure they're getting the same chances as their peers?  It's very clear this becomes their biological age.  I am not talking about mental age here, because we know that is being used to limit people and is not ‑‑ holds people back in many, many ways.  Look around and look to do that and make sure is their disability coming in this for me?  Would another child of their age be allowed to make this choice?  Would I take them more seriously and in which case I need to think about this myself and challenge that.  Finally look for maturity then for making sure everybody is getting those chances, the next stage up is maturity.  How can we give them more and extra weight.  An additional step up factor.  Age is how we make sure they're getting the same chances and we are trying to think about it as everybody else and maturity is the way we look at it in terms of getting ‑‑ can we give them more weight or more influence.  This could be almost the final say in decision‑making or how that might work.  That might be a range of factors, so I am thinking maturity in a whole different way.  It is not just your understanding of something which is often very, very close to capacity.  But it can be your ‑‑ it can be experience.  And I think we should think about a whole host of different ways this works.  Does the eight‑year‑old have lots and lots of experience of surgeries and therefore they're much better placed than the 16‑year‑old or anybody else to go I don't want that, that was terrible last time.  We want to do it differently or I need you to be careful.  Can we think about how we are engaging with them and acknowledging the person they are in front of us and lots of different ways that aren't based on ableist standards including information.  Then as I said, we explain this process, and when we have explained the process, we might have to go back to listening again because they might have something else to tell us and there might be some back and forth in this.  These decisions are never a one way street.
I think I am out of town, so before I break all of my own rules and keeping people to time, I might leave it there, but I look forward to your questions and answers later in the session. 
>>:  Thank you very much Clíona.  Very, very interesting, very practical on Article 7 and 12 of the Convention and in particular the three step model and building on the work of others.  And we hear more about that and you can have a chance to ask Clíona questions when we open it up to the floor.
We are going to move along to our next speaker, Ellen Murray.  Ellen has worked for over a decade in the LGBTQ I sector.  She established the Belfast trans resource centre in 2016, and she is currently Executive Director of Transgender Northern Ireland.  And aside from being members of various advisory panels, she is the mother of a beautiful orange cat.  The next 20 minutes or so we will be listening to Ellen Murray, thank you. 
>>:  Good morning.  The reason I mention my cat is because he is much better known than I will ever be!  My name is Ellen.  I have been working in LGBT rights for ‑‑ since 2013, and my particular area of interest for the last five or so years has been the intersection between LGBT experiences and disability.  And I am ‑‑ I have been researching that and its connections to a bit of an ongoing culture war in the English speaking world, in much of the global north in particular at the moment, especially in relation to trans gender children and young people.
To a lot of people, this seems like a tenuous connection to disability.  But hopefully I will explain over the next little while how anti disability arguments are to be honest increasingly central to this huge media campaign that we are seeing across multiple countries over the last couple of years.  So in terms of some recent history, and I am talking today about transgender children and young people, gender diverse children, any child that's exploring their gender, or that understands that to be different than what was assumed or assigned to them at birth.  It's a fairly broad collection of young people.  But we have seen a relatively good progression in Ireland, north and south, across much of the world in the last 20 years with relation to the rights of children and young people in this area.  In general, we saw developments in rights to education, rights in healthcare, which increasingly focused on a child's own ability to consent and understand their own medical needs in their social context; and also their rights in recognition before the law, legal gender recognition in some countries, but also just equal legal standing in relation to the rest of their peers.
In a number of countries, this also contained a relatively good understanding of legal capacity with respect to disabled children and young people.  But unfortunately that's starting to take a turn now.  So I have been researching the mostly the religious right in North America, in the UK and Ireland and Eastern Europe for the past five or so years.  It is the most well organised part of the movements behind these sort of anti-disability arguments that we are seeing currently.  And they mostly focus on a disabled child's or a young person's ability to make their own decisions, the legal recognition before the law, equal recognition before the law sorry, and to make decisions about their own social life as they develop.
So since 2016 but emerging from the 1990s, we are currently in the middle of a bit of a you will culture war.  Culture wars come and go, they're very politically useful tools and LGBT people are no strangers to culture wars, indeed in the 70s through to the 1990s, there were many.  This new one is much more laser focused on transgender people in general, but also more specifically within that group to children and young people.  Culture wars often focus on children and young people because it advertises society's innate desire to want to protect children.  A lot of this current movement that we are seeing, if you have been reading newspapers or watching the news in ‑‑ to be honest in most countries in the global north recently, transgender topics have been a huge proportion of cultural issues over the last couple of years.
The beginnings of this, what the human rights community refers to as the anti-gender movement started really in the 90s from a couple of very specific Christian churches but has broadened massively since then.  And we have seen huge spikes since 2014 and the biggest spike in this area of anti-rights work to date since 2019.  Just before the start of the COVID pandemic.  And I am not sure what COVID did to all of people, but it was very useful in recruiting in similar ways to some other conspiracy theory, COVID has been very useful in recruiting the normal people to the ranks of these movements.
Now up until this point the movement or the developments in the rights of children and young people who are questioning their gender or exploring themselves or who are trying to transition have been relatively linear in the direction of progression.  And the major themes have been whether ‑‑ have been allowing children to express themselves, to communicate that, their identity as they understand it, to the people in their lives, and to make decisions in their day‑to‑day life to reflect that, to make their life easier.  The major themes of what we are currently seeing in many countries around the world focus on those topics as well.  Challenging whether a child can understand themselves to understand as a child, before they turn 18, can they understand their gender or more broadly their sexual orientation or gender before adulthood?  Should a child be accommodated in that in their day‑to‑day life, whether that's in school or healthcare or in their family life?  Should a child be able to make changes with respect to themselves and to others?  And can a child as Clíona touched on earlier, can a child consent to medical intervention which is often one of the areas of focus in media discussions around this topic, because it is seen as the least temporary intervention.
Now where does it connect to disability?  A lot of the arguments that we see in this area of anti-rights work is less so specifically anti LGBT, or anti trans and more against the decision rights, decision‑making rights of disabled children and young people.  There was a very specific focus in this particular area of social policy at the moment to focus on the disabled cohort within the group of transgender young people.  And this expands more broadly to sexual orientation and gender minorities as a whole.  In general the assumption is made is there is a lack of capacity to make decisions regarding self-expression and identity, and the ability to consent to medical treatment if that's required.  So what that means is because the trans community has a lot of disabled people within it, significantly more than the general population, that is used to stoke alarm, to cause concern where it would not otherwise be warranted to prevent access to services in general.
In particular neuro divergence is a particular focus and the experiences of autistic children and young people are constantly seen in these discussions, and autistic people and autistic activists are no strangers to their infantilisation and the suggestion that they cannot ‑‑ autistic people can't make their own decisions and can't be trusted with that, but this is a particular focus from these movements at the moment.  And the cited reasons for this are often a proposed vulnerability to social contagion, that they see other children and young people coming out and transitioning, or expressing themselves, and they want to be or propose to be vulnerable to this as well.  And also a peer pressure to fit in.  Now this has been seen many times over the last number of decades on all sorts of issues.  This is just the most recent.
Another proposed vulnerability of transgender young people is manipulation by parents which is also something that is not new.  This is just a relatively recent focus of this allegations.  That parents are complicity in some form of social contagion.  Also then that exploring your gender or transitioning as a child or young person is a symptom of a mental health condition, of either the child or the parent.  Quite bizarrely, and we are seeing this particularly in North America, in both the US and Canada, and also in parts of Eastern Europe, and in particular the Eastern Balkans at the moment, the idea that disabled young people having access to the sort of information that would allow them to understand themselves is in and off itself is an information hazard and is inherently damaging.  So in the US, we are seeing this at the moment with children's books that are age appropriate on LGBT issues, being advertised as predatory to vulnerable disabled young people who would otherwise grow up to be "normal."
And in the context of healthcare and something that should probably concern people with an interest in reproductive rights in the UK, children's rights in healthcare are long established in the United Kingdom through a mechanism known as Gaelic mechanisms which allow children to consent to medical treatment in relation to their evolving capacity, without any set age in law.  This is long established.  It was introduced as a way to protect some types of sexual Health Service and access to sexual health services and sexual education.  But this applies more broadly to all ‑‑ pretty much every aspect of healthcare for children and young people in the UK.  It's extremely important for disabled children and young people in particular.  And the two areas that we constantly see this being attacked on are reproductive healthcare, so access to abortion services in particular, and more recently access to transitionary care, the things that transgender adolescents who already started puberty may need to access.
Now that is a particular danger, a lot of these ‑‑ this whole culture war is dangerous for many children across the countries where it's active.  However, the real damage and the real potential risks in the next few years are likely to be disabled children.  We are already seeing in the Republic of Ireland gender affirming services for adults, never mind children and young people, we are beginning to restrict care for people with certain disabilities and certain health conditions.  We are already seeing this in parts of western and northern Europe, especially in Scandinavia.  And we are seeing this across ‑‑ we are seeing an increased interest in this in the global context as well.
This is ultimately being used as a mechanism to restrict this particular type of healthcare and this has happened again ‑‑ this has happened before.  But the risk here is particularly with respect to disabled children and young people.  Because ultimately these are decision‑making arguments.  And the thin edge of this wedge as communicated by these movements is using disability as a socially acceptable pluck on the heart strings, tug on the heart strings to get people interested.
Ultimately, this is about ‑‑ as Clíona mentioned again, and an area of my own particular interest ‑‑ is the right to make bad decisions.  This is something levelled against disabled young people and adults all the time.  There is a fundamental right that people are able to make bad decisions or decisions that other people disagree with.  And we are seeing this as a present day example of how the social fear of vulnerable ‑‑ seemingly vulnerable people making bad decisions is used to restrict whole areas of access to healthcare and basic information at the end of the day.
Now this is for people who work in the LGBT sector, this is an obvious risk to their work and to the communities that they serve, the communities that we serve.  But the drum that I am ‑‑ have been banging for the last couple of years has been that this is all based on anti-disability rights.  That's what it all hangs off.  That's what it all relies on.  And we are seeing this increasingly as a Trojan horse to get policy makers interested.  And to get policy makers to take the bait.  Ultimately this is good old fashioned paternalism, successful at getting people interested, and it's one of the reasons it's been so successful up until this point.  
There is a few things, if you are looking out for this sort of thing yourself, the numbers of autistic children and young people who are trans are ‑‑ there is a higher number than the general population.  There is a higher number both ways.  There are more trans people who are autistic, there are more autistic people that are trans.  And this has been understood for quite some time now, for about 15 or 20 years, depending on who you believe, or what research you put faith in.  This is not new.  However, this is the current focus of the efforts to restrict healthcare access in the Republic of Ireland, in the UK, in Sweden, in Switzerland, in parts of the Eastern Balkans, in North America, and in parts of Latin America as well.  This is all based on child safeguarding and alarmism around safeguarding which contradicts years of established safeguarding practice, even aside from any conversations on disability.
Even if you have no interest in the specific issues for disabled children and young people, we are already seeing this having a mission creep up to affecting disabled adults as well.  We have already seen this in the Republic of Ireland where for example clinicians are now attempt to go refuse treatment of very basic healthcare services to adults with ADHD for example, which is a huge proportion of the population within the trans community, and we are seeing this in North America and in the UK to restrict access to healthcare information to disabled adults under the idea that disabled adults are at risk of social contagion or of making bad decisions.  Ultimately this is just the same old anti decision‑making arguments used on a particular minority group.
This mission creep is harder to move into education, but the main focus that we are seeing at the moment is on recognition before the law and legal gender recognition, which is by trans ‑‑ why trans people are legally recognised as their gender in many countries around the world, but also healthcare.
We are also seeing ‑‑ and something to have continued vigilance over is increased ‑‑ an increased brazenness of collaboration with Oran at this rights movements around the world.  The religious rights began this in the English speaking world in the 90s, but we are now seeing this co‑ordinated with anti-disability movements, anti-disability rights movements and anti-abortion movements in a way that we haven't really seen.  This is combined ‑‑ I would need three hours to talk about this, but this is combined with conspiracy theory and recruitment of people online in a way that hasn't really been seen in history before.  It's very interesting but quite alarming.
This is something that I talk about online for many hours, this is just a whistle stop tour in 20 minutes, it's a very complicated area.  But in the next two or three years probably, this is likely to be one of the most obvious uses of anti-disability ‑‑ sorry anti decision‑making rights rhetoric to attack disabled children and young people in the near future, including here in Ireland.  That's me, thank you. 
>>:  Thanks Ellen for that very, very live issue obviously as Ellen described it at the start, very, very topical and very, very current.  And I am sure there will be colleagues and audience members will want to have some questions for Ellen when we move to open matters from the floor.
So our next and our final speaker on this morning's first panel session on equal recognition before the law is Petra Angelina, Petra is from Indonesia and you are very welcome this morning Petra, and Petra is here with her father.  Petra has received international and national recognition for her achievements, she won an award for example government Indonesian solidarity action award as an inspirational disabled person just last December.  And Petra is the next member of our panel.  We have a lot of panel members this morning who are authors.  Petra has also published a poetry book a few years ago back in 2017.  We will hand you over to Petra.
>>:  Thank you.  I want to talk about my life as a young person with Down Syndrome disability.  Hi everyone.  My name is Petra Angelina.  But you can call me Petra.  This is my outline.  Number 1 introduction.  Number 2 acknowledgement.  Number 3 why it is important for me to make my own choices.  Number 4, past experiences facing inequality.  Number 5, some experiences facing fair treatments.  Number 6 how people should treat me and others like me.  Number 7, achievements.  Number 8 conclusions and recommendations.
I have Down Syndrome and I am 38 years old.  My family has always been there for me since I was born.  They helped me with therapy to make my thinking and movement skills better.
The most important thing is that my mother taught me how to read when I was two years old and I could read by myself when I was four.  I love reading books and magazines for children and I do it a lot.  Reading it my hobby.
I also started writing from simple sentences to a book of poems called voice of my heart.  I published in 2017.
I am very grateful for my family's support and for being part of the peer group.  This gave me the opportunity to explore and enjoy life more, honing and practising my skills and talent has made a positive impact on how I can live my life.  I have published my first book of poems, (indiscernible).  I have full daily and weekly activities.  Some of them are physical like walking, swimming, cycling, gymnastic and dancing.  Others are online such as painting, Bigo live, we sing, Instagram and TikTok.  I am also proud of a self-advocate.  I could stand up and inspire other people with intellectual disabilities to be proud, confident and have a meaningful life.  What I want to tell you all is that getting early education especially reading and writing skills is very important.  Reading a lot of books helps me learn more and know what is good and bad.
Acknowledgement.  I am very thankful for the chance to be part of the 14th International Disability Law Summer School by the Galway University.  I am honoured to share my thoughts and experiences with these distinguished audiences.
I want to thank Dr De Bhailís, Sharon, Professor Flynn, Mr James and everyone involved in this event.  You have helped me a lot with your guidance, advice and connections.  I would not be here today without you.
I also want to say thank you to my teacher of YAPESDI who taught me how to be more confident and brought me here.  And to my family, especially my mom who could not come to this event with me.
Why it is important for me to make my own choices: I like to decide for miff because I can do what I love whenever I want which makes me feel good and happy.
I hope my parents would listen to me before saying "yes" or "no" to any invitations or performance opportunities.  I had a bad experience once when they let me do a creative dance without knowing that I was not feeling well.  I became sick and everyone in my group was worried and panicked.  I don't want to make people worry about me and this situation could have been prevented if they had asked me first.  Luckily after talking more, my parents always ask me first before accepting or rejecting any invitation.
Past experiences facing inequality: 
I have a disability and some people are not nice to me.  They do not let me do things or choose things like other young people have.  Here are some of the examples: an insurance company refused me even though I have followed all the regulations.  When I went to a regular school, the other kids did not play with me, and the teacher did not care.  So my mom moved me to another school for me.  At that time there were no inclusive schools in my area for special needs.  I had to wait longer to get into the public vocal music school because they did not know if they could take me as a person with Down Syndrome.  My Dad had to tell them that I could well.
A man that I know through online pretended to be my boyfriend, but he only wanted my money and took advantage of my disability.  I was unaware he is lying until my mother told me.
Some experiences facing fair treatment: 
On the other hand, I receive some fair treatment as a person with a disability.  Here are samples: 
When I lived in Rumbai camp in in Indonesia, I could go anywhere by myself.  I took a taxi or a bike to the store or to my friend's house.  I was not afraid.  But now in Jakarta, I am scared to go out alone because I feel unsafe.
I went to Vernon and Gilda Haynes public school in US from 1997 to 1999.  The school was for everyone, an inclusive school.  All the students used the same school facilities.  Regular students helped teachers in our class.  That taught us to respect each other.  I don't face any problems when I go to the doctors, to the bank, or other places if my parents or brother accompany me.
How people should treat me and others like me: 
Indonesia has a law to help persons with disabilities like the UN says.  But many people do not know about this law so they do not use it.  I hope the government and others will inform and apply this law more to raise people's awareness.  I hope they will allow everyone to learn together in public schools so kids can be kind to people with disabilities from a young age.
I hope they will make public transportation safe for people with disabilities to travel alone.   
Some of my achievements include: winner of free style swimmer on special Olympic Indonesia 2010.  Performing as a main dancer in Singapore art festival with my group.  I published my poem book.  Appointed by UN women to voice my opinion on what justice means.  As speaker inside event ESCAP2023.  I was awarded by OAS eGovernment of Indonesia ministries coalition organisation in 2022 as inspirational disability person.  As speaker in the event.
This is are my conclusions and recommendations.  It is important to have opportunity and access in early learning, especially on speech, reading and writing in order to get broader knowledge and ability that could make us feel more confident.
We hope to get the same rights and opportunities and fair treatment in all situations, no matter what our condition is.  We have to educate ourselves on our rights and ask others to respect them.  We want others to listen to us and to include us.  Persons with disabilities should be treated equally in all areas of life.  Person like me don't know about their human rights, they are treated badly and never know their own potential.  They miss out and society misses out.
Access to justice is very important because we need to be treated fairly, to feel safe from harm and bullying when in a public space.  How would you feel knowing people might see you as an easy target for violence and crime because perpetrators are hardly ever punished?  This is especially frightening me as a woman.  I feel privileged to be here to speak to you about my experiences in my life as a young person with Down Syndrome disability because I have a supportive family that supports my participation; education so I can read and write; organisations like YAPESDI who support my learning in my adulthood.
Thank you for listening to my speech and have a great day. 
>>:  Great, many thanks Petra, that was showing off a very formidable array of talents that Petra had there, the power of her lived example from swimming in the special Olympics to her dancing feats to publishing poetry to being speaker at an event.  Almost intimidatingly a high range of achievements from Petra.  In particular I think throughout her presentation, but in particular at the end, Petra is highlighting in the conclusions recommendations the power of education, early learning and access and the opportunity and the support of her family and a supportive family, supportive organisations, and in particular I think what's important and brings us back to equal recognition before the law, there may be laws in Indonesia that the State has passed but there is a lack of broader awareness of legislation and rights and therefore lack of application of them.
Okay, so this morning, our first panel is all around voice and choice.  So very appropriately now, we will turn to yourselves and the audience, and we are going to look at our colleagues who are joining us by Zoom as well, and look at some of their questions.
First we might go in the room to audience members.  We have two roving microphones and we are going to group questions together so if you want to ask your questions, we have a lady down the front here maybe to start with.  And we will bring in audience members joined by Zoom as well.  If you would introduce yourself perhaps at the start that would be great.
>>:  I am Laocin Brennan from Dublin Ireland.  When you said you are going to group questions, do you mean by the presenter, because I have got a question for both Ellen and Petra?
>>:  If you just give us the questions, I was going to try to group them from more than one person, but if they're substantive enough questions, we will take them.
>>:  Petra, is there an English translation available of voice of my heart.
>>:  Can I help to answer.
>>:  Yeah.
>>:  Thank you very much.  Some of her poems will be ‑‑ she will give a poster presentation this afternoon, and some of those have been translated in English.  But the whole book is not yet.
>>:  Brilliant, thank you.
>>:  So we will ‑‑ in the future, we plan to translate to English.  In addition, just a little bit, Petra write the poem without our disruption at all.  She just write it what it is and maybe from the grammar is not correct, but this is the voice of herself.
>>:  We won't be fussy about grammar, absolutely not.  Sorry, was that okay Petra, did you want to add something?
 
>>:  Do you want to say something about your poem, when you write it.
>>:  I write it in ‑‑ into ‑‑ 2017.
>>:  And the process of writing?
>>:  With my yoga and inspiration and feeling.
>>:  Very good.  Okay, thank you very much Petra.
>>:  Thank you.
>>:  You had a second question.
>>:  A second one for Petra and then one for Ellen.  The third last slide in your presentation, there was a photo of a poster and it had pink text and I didn't get to read it all.  It said inclusion to me something.  What's that quote, do you know.
>>:  We can share the slides I think.  We can share the slides I think.  We will share the slide deck for everybody who is here, is that okay?  It was the third last slide, there was a question about a quote, maybe we can.
>>:  While you set up the slide, I have one for Ellen, what type of book is how to be a good boy, is it fiction or non‑fiction.
>>:  I am really bad at plugging my own stuff.  It's very difficult to ‑‑
>>:  Will I stand ‑‑
>>:  But it's non‑fiction, it's a brief introduction to like getting started into human rights.  How to be a good boy references a Twitter cat, again long story.
>>:  Thank you. 
>>:  Was it this slide.
>>:  No, it's after that, there we are, inclusion means.
>>:  Conclusions and recommendations.  It is important to have opportunity and access in early learning, especially on speech, reading and writing and all of ‑‑ in order to get broader knowledge and ability that could make us feel more confident.  We hope to get the same rights and opportunities and fair treatment in all situations no matter what our condition is.
We have to educate ourselves on our rights and ask others to respect them.  We want others to include us.
>>:  Thank you very much, and thank you as well Ellen.
>>:  Okay, other questions from the floor.  Again if you just introduce yourself.  Thank you. 
>>:  Hello, good morning, thank you very much for the presentation.  I wanted to ask the panel, you were talking about children that are able to make decisions and consent by themselves, but we have children with disability that are very ‑‑ say on the severe spectrum of things, and say as a parent where does my concept and the child's consent meet?  My daughter that is severe cerebral palsy and it means that I cannot consent to sex or anything or any other operations, and getting it from her.  So it means that given if I don't want a certain operation or a medical intervention done to my child, what laws are there to protect me and to also try and include my child as a person, because she can't give consent.  And also I don't know if I am ‑‑ I have been wondering, say for instance if I want my child to have a child, can I give consent on such issues like that?  You understand?  I also want to be a grandparent one day, but where does my consent start and where does my consent end?  Do I have consent to have her ovaries, get a sperm donor and get her pregnant, so you understand?  And also Petra, she is doing a very good job, I would like to acknowledge you for representing the Down Syndrome community.  Thank you very much.  Keep it up.
>>:  Thank you very much for that question.  I might just see if we have any other questions that we might be able to group, is there anyone else wants to come in from here in the room?  Any other questions, because there is ‑‑ I might put that question so to Clíona, that first question, just in relation to the parental point of view I think in relation to severe case on the spectrum?
>>:  Is there.
>>:  I think it's related, yeah.
>>:  Hi, first of all, I am Francis and I am from Australia, so hello to our colleagues from Indonesia, nice to see you.  My question is for Clíona.  In Australia, we have interpretive declarations on Article 12, 17 and 18.  What I would like to know as an advocate, how can we manage to convince our authorities, our federal authorities to look at Article 12 and that interpretive declaration in the light of Article 7 and children?  It's a little bit tricky, I know!  But I would like your opinion on that and how we can best lobby as advocates.
>>:  Okay, we have a couple of questions there Clíona, and maybe other members of the panel might want to pick up if they wish.
>>:  Of course, I will get started but if Ellen or any of the others have thoughts and you want to join in, please after I am done, do so.
So when ‑‑ I am thinking about children and their right to participate in decision‑making or consent, I am thinking about every child regardless of ideas of them having high support needs or needing more support than others, having that right and ‑‑ to participate and the ability to do that.  It's about the support we provide.  It's about how we structure that.  And indeed you as a parent might be one of the people very best placed to help to interpret what people close to you might be, but there also might be other people in their lives and especially as you grow older that they might have connections and people they meet through school or through other things that they develop networks but then who might also be able to support their communication and work with them in that way.
Then as time goes on, so for very young children, it might be different to what we are talking about for teenagers and for different stages in life, and that I think happens to us all.  The types of decisions we made and were involved in at three are very different to at 13 and later on certainly.  But it's about centring and thinking about what their will and preferences are, what they might like.  Is there a particular reason they didn't like this before and how we can make sure that's a central part of it?
I should say that ‑‑ and I didn't get to it in my presentation with enough time and it was a whole other can of worms to open when I got to the point of running out of time.  So I spared you that.  But there is the concept of course of best interests and they have retained that for children under the CRPD, and that is something that we are using for children and those ‑‑ when I say children in this case and young people, I am talking about those under 18.  I know a lot of young people in my survey would not want to be called a child despite the fact they were under 18.  They would have taken massive offence at me calling them that, but that's what I mean by child in that situation.
And that we apply best interests in these situations that there is this idea that at the end of it all we still have to do what is in the best interests of the child and that should be our primary consideration.  Now under the Convention on the rights of the child, we already know this should be a rights based approach.  It should be this idea that we are looking at the child's rights and we are balancing them and thinking how can we make sure that all of these things are balanced and work together.  For me, and very clearly within the Convention and how things are written, their right to express their views, their will and preferences and to have those respected is very clearly one of those rights that we need to be working on and respecting that and their autonomy is certainly central.  There might be times when it is not possible respecting will and preferences is not exactly wish fulfilment.  We haven't won the lottery.  There will be things we might not necessarily always be able to achieve.  I am not necessarily going that far.  But it's about sitting and thinking about work arounds and working through that, okay they like this and how can we make sure we are respecting that element of it.
And also this idea of best interests as a rights based perspective, that's what the CRC very clearly says in their guiding documents but I don't think that's what many people in the literature shows us and from talking to lots of different people, I don't think that's what people understand often when we think of best interests.  I think some people take it very, very literally and go we have to do always what is very best and we have to do something like this, or the interests of the child must do these very serious things and approach it in a way that is very much focused on very medical expertise perhaps, or some people who think that they know exactly what is best, rather than a balancing or a rights based approach.  So I would have looked at that in my thesis and said maybe we should actually, if we can in our laws and policies change that and use rights based language instead, move away from the language of best interests if people aren't accurately understanding what it means and use the idea of rights.  Because if we start talking about how can we make sure that we are respecting the child's rights, how can we make sure that we are balancing them properly, then I think we are starting from a much, much stronger place of thinking about them as a person with rights and as a person within the whole situation to start with, and then we move on from there to do our very careful and often precarious, I will understand, balancing act of all of the other factors that we have to think about.  But being very clear that autonomy is part of that.  And parents then as I said, are also a part of that in a very big way, because they are the people who support the child day‑to‑day, who know them best and who do all of that.  But it is their ‑‑ there will be times when and I am sure most of us in this room can think of times that we have disagreed with our parents and there have been times when we went yeah but I have to different take on this now.  And that is going to be a struggling maybe and going to be hard for some parents to adapt to.  Certainly some of the people who took part in my research went the first time that a doctor or somebody sat in front of me and said actually it's their choice, and they're doing something different, they were taken aback and had to adjust themselves a little bit more to do that.  But it's still very possible I think to do it and we need to create systems and environments that support parents to take on that very supportive role that a lot of them are doing already.  But just to make sure that we are creating systems around them that help them when they want to do that, rather than look at them and go are you being a bad parent because you are letting them try something out now?  Are you letting them take a risk and letting them do something and that's not something we should do?  Every country, to go back to your question, that's the kind of international human rights law bit of your question.
When you talk about then the laws on consent to treatment, every country will have slightly different laws and how that works.  In Ireland, for example, we say that 16 and 17‑year‑olds, if they have decision‑making capacity, should consent to medical treatment.  It comes from a piece of criminal law the way it's written, but essentially in our national consent policy, that's what that states.  And if they don't have decision‑making capacity at that age, it's written in a way that suggests that their parents are the automatic ones that would step in and do that.  And I think for most people it will be their parents or a lot of people at that age, it still will be their parents that they call to.  But I don't think that's the case for everybody, and I think that's why we need to think about other types of support, giving the child options for other people to bring into the room if there is somebody who would be more supportive, or knows them better, or it might even be extended family.  I don't know who that would be in a child's life at that age, that would be very different for everybody.  But to think about that.  So I hope I did your question justice for all of the various bits of it?  I am not sure.
And then the other question was around interpretive declarations Francis, and very much putting me on the spot for okay that's a great idea, but now how do we make it happen?  And I have been thinking about this quite a bit and I don't know that I have the perfect answer, but I do think we need to follow in now with some of the moves in the idea of decision‑making capacity and challenging some of these ideas for supportive decision‑making for adults and go but hang on, this doesn't ‑‑ and this was some of the idea behind my PhD, where I was thinking about I did not sit bolt upright in bed at the age of 18 when I magically became an adult in Ireland and have all these decision‑making skills and go, right now, I know everything, it's all set, just by a change of date and the tick of a clock.  It happened because I got these experiences growing up, good and bad.  It happened because I had support.  It happened because I had these chances.  I was and wasn't listened to at various times good and bad.  Mostly good I will have to admit.  I was very lucky for some of the people that I met and the approach my parents took at various stages.  Maybe I didn't always tell them as a teenager, but that's a separate argument.  But that we use this idea of that decision‑making doesn't start at that age and think about how we are giving them those opportunities and use that to build this case of support from an earlier age I think is very important.  And how we get to challenge that.  Of course we are going to lobby and ask that these interpretive declarations which Ireland also has, are removed and that they reconsider their position on these things, but even when they're enacting new strategies, action plans, that they're looking at various things which are questioning them, are you updating them in line with some of the other provisions of the CRPD?  Are you just thinking about support at starting at a certain age?  Why aren't we thinking about it for the 16‑year‑old if they're the one going into the doctor?  I am using very Irish examples, excuse me, but if that's the age in your country that that's happened, can they get support?  Are we putting support in practice at various earlier stages even throughout whether it's school when you are making decisions about subjects, or other examples as we go through, so it just becomes common practice.
When I was talking about my model earlier, one of the things that I didn't explain I think or show very clearly was that I have this idea of support being across all of these examples.  I think I talked about it maybe a little bit more in terms of those early stages of ask.  But when I was thinking about it, I was thinking about support being this constant thing right across the bottom.  If you were to think of three separate blocks, support was almost this tape across the bottom.  It just runs on and on and on.
I think we have to try and build that into some of our practices when we are working with children in all sorts of other spheres as well and these can be ways, okay have we thought about access and support, have we thought about access and support, that we might then start to work towards putting these ideas into lots of areas and lots of changes that we are making.  Because it isn't just one small area I think around decision‑making.  It's something that impacts lots of areas of life.
How exactly we get them to do that every time is a bigger question and I am not sure I have a good answer unfortunately, except to constantly  try and do it and try and make sure we are not just thinking of decision‑making as an adult perspective.  I do hope that some of the younger advocates that we are going to hear throughout the week in various things can be a part of that and getting more children and youth groups involved would also be very beneficial
>>:  Can I just pick up before we go back to the floor, there is some questions have come in online and just relevant maybe to what you were speaking about earlier Clíona.  There is a question in from Pippa, here in Ireland do adults have the right to have a support person in medical situations?  I remember reading on the wall of a GP in New Zealand that all patients had this right but here pre‑COVID this did not seem normative.  Can you answer that?
>>:  I don't think it was here and I think we are changing that, so we have recently commenced our assisted decision‑making capacity act and under that act, people can pick a decision‑making assistant or somebody like that, and then they should be of course allowed if they have ‑‑ if the person has picked them, to help them with healthcare decisions, if we are talking about a GP in that example.  Then I think they should be allowed to go into them for appointments and we are hopeful that that idea of support will become a lot more normal as a result of some of those ideas.  I think for both adults and children in some of the things I have worked on and the research I did, but also found, a lot of the ideas were around at 16 now they're allowed to make their own decisions, right let's say for example and that immediately meant and we are going to put the parents and everybody out of the room now because they're all grown up and they must not need anybody.  I for one even as an adult, especially for some medical appointments really liked somebody to come in with me, just to listen so that they were also hearing the information that was being shared, and that they were also involved in some of the conversations.  It was still my decision.  I still wanted the doctors and everybody involved to be talking to me.  But it was good sometimes to have a second pair of ears in there or somebody to have that supportive idea, if you are getting bad news or going through something that's quite challenging.
I think that isn't as common as it should have been, to give that option.  I know people were doing it very much to respect people's privacy, but this concept of support, a chosen support, somebody that you want there and choose to be there, is very different, and you are asking to have them brought in.  But it should be made easy for you to do that and comfortable for you to do that as well.
>>:  Okay, thanks Clíona, we have some more questions online, I will come back to them in a second.  Are there any other questions from the room.
>>:  I am Monica from Zambia.
>>:  Good morning Monica.
>>:  From Petra's presentation, I have been encouraged and I wanted ‑‑ I have seen that one of the points she has mentioned is family support.  Which to me is very important, just like we heard yesterday from Poka that family has become his comfort zone.  So to me I see that as parents, it's important (indiscernible) is acceptancy that God has given us this child and it also encourages the child, it gives confidence to the child, their siblings, and the outside.  So it starts with the family.  So that has encouraged me a lot and also encouraging us as parents.  And I also ‑‑ another thing that has encouraged me is the parents, especially that she has come with the father.  Where I am coming from, most of the groups that we have formed for mother, for parents with children with disabilities, in most cases fathers are not seen.  But to me it's encouraging to see a father coming with her with all the support.  I am sure if this presentation is seen elsewhere, fathers must also know to be there for their children with disabilities.  So to me, it's quite encouragement.  Petra continue with what you are doing, it's very good.  Thank you. 
>>:  Thank you very much Monica.  I appreciate your acknowledgement.  Basically the first realisation that we accept the children with disabilities is not easy process.  I myself, the first three months, my wife not quite sure, even I know I am not ‑‑ I forget to tell her and she is angry and crying.  And then fortunately there is a doctor that know and help us to maybe live in the area that isolated, because I work in the camp, it's good facility, but the doctor facilities are fairly limited at the time 86 when she is born.  And the doctor that give reference to Jakarta, when she was six months old.  Then because my wife is working, so we left her in Jakarta with grandmother and my wife come back every two or three months to check her, and we left her until almost one year, so six months in Jakarta and come back to our area.  The point that is realising that we have to accept it is not easy process.  Of course it's a critical process as early as possible is important.  And you mentioned that because I am here, actually her mother is very, very like (indiscernible) very much.  I am just supporting.  She teach her, she taught her reading when she was two years old.  Because she read a book called how to teach your baby reading by Dr Toman.  It is back in 1987 or something that she got it from her friend.  And then she teach it and she believe in all that.  I am not quite sure, but she always, every day, and then by four years old, she already influenced for reading and so much.  Because the first one, several months, she couldn't talk at all.  Like, you know, with Down Syndrome, you don't know what it is, and very weak, and so movement is so very slow, but then when she liked reading, she enjoy so much the reading
>>:  Yes, yes, it's right. 
>>:  So thank you for your ‑‑ actually for the credit for her mother, not me.  Her mother cannot come here because she has problem, but of course she is willing sometimes, but again I think ‑‑ thank you very much.
>>:  And thank you for the question. 
>>:  So the mother did all the work and the father gets the nice trip to Galway!  Fair play to you!  I am only joking!  Thank you very much for the acknowledgement and for the support.  Do we have any other questions from the floor?  Up the back here.
>>:  I am Tom, I am here as a grandfather and a PA to James here.  So I am actually finding all this event really educational to me.  I have a couple of questions really.  One for Ellen as regards in your presentation you said there was access to healthcare for certain LGBTQ + people was being withheld.  And why would that be?  And you mentioned a number of different States are doing this, so is there collusion between governments to prevent people accessing State healthcare.
>>:  Do you have another question Tom.
>>:  The second question is for yourself Colm, how in touch and aware are the politicians generally with regard to disability groups and in particular Ireland's obligations under the UN?
>>:  Okay, Ellen can go and then I will go if that's okay.  Thanks Tom. 
>>:  Thank you for the question, in terms of what healthcare is being withheld from children and young people with ‑‑ disabled children and young people, it's a mix, but the predominant ‑‑ in the context of what I was talking about, it's mostly access to gender affirming care, which is usually for older adolescents, and younger adults.  Where disability is seen as a reason to discount a person's otherwise perfectly normal experience of ‑‑ and very typical experience of understanding of who they are and what their needs are.  So a young ‑‑ an adolescent or a younger adult might go through some form of mental health service, then go on to access some form of hormonal intervention for example, later in adolescence.  Where this restriction in healthcare comes in is where somebody's disability is seen as a reason to basically invalidate their consent.  And we see this in Republic of Ireland and in the UK and in plenty of other countries as well.  I don't think there is collusion or anything like that.  I mean, if there is, there is no evidence for it.  I think it's more of a case that governments can often take simultaneous interest in different social issues depending on how they're perceived in the most dominant countries of a given language or a given political system.  So in the English speaking world, when there is a big culture war going on in the United States of America, often the UK and Ireland take notice for example.  The same in the French speaking world, the same in Latin America.  So it's more the social interest across shared language than State collusion or anything like that.
However, there definitely is well understood collaboration between different interest groups across countries.  So we see in the United States of America, there is a very well ‑‑ we saw this in Ireland for example during the repeal the eighth referendum on the removal of the constitutional ban on abortion in Ireland's constitution, we saw a lot of collaboration across the Atlantic between the American religious rights and efforts here in Europe.  Activists in Eastern Europe, from Hungary to Poland to Belarus, the Eastern Balkans, the southern Balkans all see quite similar collaboration across the Atlantic, where it's a lot of resources and a lot of money comes from North America and is spent here in this continent.
In terms of how States are involved, we see this really in concert with a rise in European conservative politics, especially socially conservative politics within Europe at the moment.  And that's one of the strongest correlation factors, so you will see those two things coming together a lot of the time.  These sort of cultural hot topics when they are topical like this, usually fizzle out after five or so years.  It's hard to tell at what point you are at in any given trajectory.  However, I think one of the more worrying things in this particular topic is seeing just the sheer amount of international collaboration and the sheer amount of shared talking points and policy across different ‑‑ even just different European governments, the different governments across the global north in general.  I don't think there is collusion, but I get asked that question quite frequently and I can see why. 
>>:  Thanks Ellen, so I might pick up Tom on your second question there how aware is the political system around disability issues, around rights, around CRPD.
So there is a few answers to give.  I would be able to give a much better answer to be honest in terms of how much ownership across the political and across the government system, across different government departments.  There will be later in the year, early next year, when we will have done the next national Disability Strategy, which is going to be the strategy where we advance key issues, key priorities and it will act as our implementation plan really for the Convention in Ireland.  Across all parties, across the whole political system, there is massive consciousness and awareness around children's services, around therapy services, which is very, very prominent and there will be a concerted effort made, there are some underlying issues that we have in terms of these services for maybe around 50,000 children.  You are dealing with a massive problem with staff recruitment for example is the most obvious one, but there are some other issues as well.
I think more broadly, I think government will be looking at increasing investment into specialist disability services, so under this government and it took too long to make it happen, but as I said at the start of my remarks earlier, I just mentioned briefly earlier our department now for children equality and disability took over the mandate for policy and for legislation and for oversight of specialist disability services from the Department of Health.  These services will still be delivered or funded mainly funded through the HSE in Ireland.  But we have brought together in one department under one Minister Roderic O'Gorman and Anne Rabbitte has responsibility as well for specialist services, plus this Monday date.  It's the first time this is located in one government department.  I think you will see a greater focus, there is no doubt the whole rationale for this is to increase the focus and increase the attention and the action and supports for people with disabilities throughout Ireland.  And you will be seeing ‑‑ it's under discussion at the moment, a multi-year programme of increased investment and reform and specialist disability services.  And that's a big part of ‑‑ a push that will come seeing as we have successfully if delayed, but successfully made this transfer in function.
You will be seeing as part of that, you mention in terms of PA there, you will be seeing increased investment in PA, home support, residential services and respite and a range of different services over the coming years.  This is our intention anyway.
And in particular, I think for Ireland, like for each country has to decide what areas it focuses on, CRPD is extremely broad.  And you will want to make ‑‑ we will want to make progress and we will want to see ownership across government and across public bodies for the range of obligations under the Convention, but in particular if we want to make progress in particular areas, employment is a particular challenge in Ireland in terms of the rate of employment for persons with disabilities versus people without disabilities is a particular challenge in this country.  Transport was mentioned I think by Petra on one of her slides.  Transport is an area that's been around for quite a while and is a tricky issue.  But transport is a key issue.  There are other key issues, but I think what we will have to do to make progress in the next three or four years is to make some choices in the framework of that strategy.  There will be very broad consultation done through the course of the rest of this year and into early next year on developing that next national Disability Strategy.  And I think you will be able to see in a very real way what is the level of commitment and ownership across government.  It will be much clearer at that point.  That's a Programme For Government commitment.  But that will really reveal the level of ambition to change as part of that strategy, we will be able to answer it for you.
The other common way is rather than me saying it, people from either the centre or elsewhere saying I think comparatively how good bad or indifferent we are in Ireland in terms of the State or in terms of government and its commitment to persons with disabilities and to people ‑‑ to advancing their rights.  So I do think there is positive changes.  I think we have very significant way to go, absolutely.
Could I see if there is any other questions from the floor or from the audience.
>>:  I am from the Philippines.  My question would be two parts: I hope you can comment on this ‑‑ I just want to make sure I understood the discussion correctly.  The topic is equal recognition before the law, right?  And so my takeaway is that the rights based approach can only be done when we educate and give accurate information to people, especially children with disabilities so, that they can make the best decisions.  And best interests happens when we teach people to value ‑‑ or children, their like body, mind, because I read a lot about the bio psychosocial approach, so I want to hear your thoughts about that.
And then another question is ‑‑ because I realise that we can only educate or train people to a certain extent.  How do we help the families or what support do we provide the families so that they can guide the child like (indiscernible) I have talked about future thinking yesterday, I am just really trying to ‑‑ because I also have a child with disability.  How are we like preparing the parents and the families to do these things?  Because I realise that that the ladies said we need to create strong parents with disability groups, and I realise that most of the children here that are discussing are more of the exception rather than the norm.  But the challenge I think is how do we create more parents like them so that we can reach more children with disabilities and really mainstream this or something?  Because a lot of children are either hidden, by their parents, especially I am coming from a third world country, so there are really problems like these are massive.  And I am just trying to wrap around ‑‑ my head around how do we create movements to really solve these problems that we have on the grass‑roots level.
>>:  Okay, thank you very much.  Very interesting I think and picking up maybe on earlier discussions and questions as well, two points one obviously the first one education and giving accurate information to people, but in particular I think mainstreaming family and parental supports to help guide children, would someone from the panel wish to come in there?  Yes, absolutely. 
>>:  Thank you Mona, thank you Mr O'Connell.  Colm.  When Petra said about education is important, it's not necessarily a formal one.  Because from the beginning when we test ‑‑ we received the IQ tests, you know Down Syndrome is 60 to 70 is the maximum and we realised it is not education for a job.  Education that she can enjoy things that she know, she likes, like reading a lot of books and this is very helpful.  And from that, that's the development of skill for the art, like music and also writing.  I think is this different person to person for disability.  Especially for Petra from the beginning, we don't hope of high formal education.  The thing, the basic and of course the process is also repeated, like what Clíona mentioned, listen and ask, listen and ask.  So that's the final process that we have to accommodate.  But once she understood, now she more advanced or maybe a little bit tech savvy than myself.  She know a lot of things without I have to teach.  So that's the point.  Then hopefully that make her, if it can be a real writer, then good, or the music or something like that.  But not for a job.  That's what I understand for Down Syndrome.
>>:  Thank you very much.  Did anyone else want to come in on that.  There are other questions.  Clíona?
>>:  Maybe not necessarily the points around education, but just thinking a little bit about the idea of support for families and how we can make sure that we are ‑‑ if they're doing some of this work already that we are supporting them and then if they're not that we are also supporting them to think this way and to move in that direction.  I think you are right.  There is lots of layers and things that we have to work on in this and including maybe challenging the stigma around disability and some cultures and making it that people are more included in their community and how we do this is very important.  And then once we were working on that, it's also about supporting parents to think about these processes.  There is a certain amount that the law can do.  There is other things that will happen across society and that we can do by the way things are structured and how things will happen.  My thesis and the work that I did looked a lot at the law to be fair to it.  So that is some of the things that are coming into my head and I know that those aren't the only answers, there might be others as well.  One of the things I was thinking about was that it has to become commonplace that we ask and what do they think kind of thing and that we are going to the young person or the child.  It has to become more commonplace.  This is what we are working on and what we are doing.  And this helps both groups I think.  It helps families who are already doing this to not feel that they are doing a bad job or not feel that they are being undermined and excluded further in how they do this and this is something that some of the parents who were in my research would have talked about when they talked about well I go in and even when I produce something new or when I say I am doing this, nobody is listening anyway, so it feels like I am not making any progress and they're kind of wondering why are you asking them, what's going on, there is nobody doing it in that way.
For others who are not already thinking this way, if when you did go to your appointments, did certain interactions, if it became more commonplace, it would help them to shift their thinking and go actually, maybe we should be doing more of this kind of work and we build the supportive structures there already to help families do this and provide the supports around that as well so that more access to some of those supports or information is available for people and what options are out there.  Again this is something that came newspaper my research, but is similarly documented in research from Australia by I think Christine Bigby who are going, we did this, did the courses, an awful lot of the work and then we went in and nobody was going to ask the question anyway, or they weren't going to listen when we said they thinking is.  It undermined a lot of the effort that had gone in.  You need both, to support them to develop the skills to support the child and put the things in place on one hand, but then you also need the systems that aren't going to battle against you because you are just going to feel like you are walking up against a wall and not making progress.
>>:  Just picking up on that question, we have a question in online from Dana, who do you think could provide assistive decision‑making services, parents, friends?
>>:  A lot of our support and people might have different thoughts, but for me support is very much up to the person to choose who knows them and who they want in that position.  I think a lot of the young people, when I asked, I had a question in my survey, a lot of the young people in the survey I collected, 92 per cent chose their parents as some of the people that support them.  But that wasn't everybody in the survey, obviously and it isn't everybody in how that works.  They talked about extended family.  They talked about some professionals in their lives, teachers and other people who they went to.  And often it depended on what the decision was as well.  You go to some people for certain things and others for different things and we all do a bit of that.  I would ask my Dad if I was going to buy a car, I wouldn't necessarily bring him shopping for other things and other decisions in my life.  There is different people we go to for various things and I think that's equally true in this situation.  I don't know if other people have other examples to share.  I don't want to take over the mic completely. 
>>:  I think as Clíona said it's useful to think about that in the way that non‑disabled people also use assisted decision‑making.  If you are buying a house or you are doing something ‑‑ this is unimaginable in modern Ireland, but if you are buying a house, you would probably ask the people you trust, and that's just an assumption of an acceptable form of decision‑making.  And one that's sanctioned.  Whereas if you had somebody you didn't want advising you who had to advise, you would understand that's a very different interaction.  So thinking about it like that, where it's led by the person, whoever is helping should be ideally the person that they want.  But also it's driven by the context and what that actual need is.  Going to the doctor is going to be ‑‑ you talk to a different group of people about going to the doctor than you would going like planning a holiday or whatever.  So it's all about that social context, and I know this is often a problem in assisted decision‑making conversations with public authorities is it can be quite a one size fits all thing.  And it assumes that there is ‑‑ they can assume that there is always a certain level required and it's always going to be the same.  But that just doesn't exist, it's just not the case for the general population, and it's exactly the same for disabled people who benefit from assisted decision‑making.
>>:  Thanks a million Ellen.  So we are closing in on our time, so there is one or two questions that I need to pick up on, I might put this next one perhaps to Clíona.  Netta online has asked, she was wondering what a more participatory or compassionate capacity assessment would look like thinking more about situations involving young adults, perhaps.  A two minute answer?
>>:  Yes, I do.  The very short answer to this is I don't know that we have found any capacity assessments that are suitable or compassionate or don't discriminate in one way or the other and so in line with Article 12, despite the fact that they have tried to change them over the years, despite the fact that they've tried to go but it only doesn't just apply to these people or we are not doing it this way or that way, over the years it has been shown that more often than not disabled people are more likely to be asked, tested in this way or more likely to fail and so Article 12's solution was we don't have capacity assessments.  And I think that's what the CRPD calls for, it calls for the removal of such assessments.  And instead focusing on how we can support people and what supports that we can put in place instead.
>>:  Okay, perfect.  Was there one final one from the floor perhaps?
>>:  This is for you and a take home for you because I know that you are attending the next national strategy Colm.  I feel like the government or your department is not doing enough when it comes to people living with disability in direct provision.  And this is a take home for you to just say equal recognition before the law for people living in direct provision with disability.  Thank you.
 
>>:  Okay, noted, I know that there is a lot of work ongoing more broadly for people with disabilities and without disabilities in direct provision, but it's been too slow progress to be very, very honest with you.  But I wouldn't be disagreeing with that in terms of this ‑‑ the progress being too slow in relation to direct provision.  If I could just ask a final question maybe from online, this is for all the panel, maybe just a quick answer, what should we do, a round‑up maybe, what should we do for people living with disabilities to be part of our decision‑making in our communities, any final thoughts that you have?
>>:  What is the question.
>>:  What should we do for people living with disabilities to be part of decision‑making in our communities?  Is there any final thoughts you have I suppose from the panel.  Ellen?
>>:  I mean the simplest thing is to ask when it comes to making local decisions, it's ‑‑ I know back home in Northern Ireland, governments are getting better at this, but literally just asking and thinking about what that means.  If disabled people can't get to where you are asking, then you are not asking them.  So those sorts of basic considerations.  And that's ‑‑ disabled people not being asked about things and not giving their answers about things is one of the reasons ‑‑ is one of many reasons society can be so inaccessible.  And that's a very basic society level of beginning to address that. Literally just ask.
>>:  Maybe I add a little bit on that.  In my experience that understanding of this Article 7 and 12 is fairly limited.  So basically how we do it with the ‑‑ this is a meeting, mostly is interaction between ‑‑ and the family first.  I think it really comes back from that.  Whether the law is access or not.  Because just the basic ‑‑ tradition not like in here.  You have the government support.  You have the educational like this that really very, very active on that one.  So we like to say you are lucky in Ireland here, one of the best examples in hand between government and education and then the society.  (indiscernible) helps to encourage people with organisational like that, but again the basic thing is of course come back to the core or the family to always care of the children with disability on what they need and how do we understand about that.  Thank you.
>>:  So just to say thank you.  We have reached the end of the panel.  Just to say thank you to all our ‑‑ actually we have an announcement and then I will say a word of thanks to everybody maybe.
>>:  Thanks, sorry, I have been given one last housekeeping duty before we finish, it's the perks of being both co director and panellist for today I think.  Today we will take our group photo, the group photo that we take every year at summer school and that will happen just before lunch.  So at the end of the next session.  So we are going to be asking you at the end of the next session to make your way relatively quickly out of the auditorium to cut maybe some interesting conversations short, to make your way quickly out of the auditorium and towards the lobby area or the courtyard just outside to take a photo.  There will be volunteers in maroon T‑shirts on hand to help you and show you the way.  And of course if you have decided not to be involved in photographs this year at summer school, you don't participate in this either.  It's just before lunch and we will reminded you again later.  Just to give everybody some time to plan for that.   
>>:  Thanks Clíona.  So we will be back, we are taking a coffee break, back at 11:15 with another panel to discuss living independently and being included in the community.  If we can give a signed applause for Petra, Ellen and for Dr Clíona de Bhailís.
(Short break) 
>>:  Okay folks we might get underway with our second panel this morning.  And this panel discussion is going to focus on living independently and being included in the community.  We have three panellists sharing insights for the right to independent living.  And how they can be supported to live in and be active members of their communities.  We are going to have three panellists, and I will introduce them in turn before they make their presentations.  Three presentations again from this panel, and then we are going to have it opened to the floor on the discussion and the back and forth.  Dragana will start just in a moment.  Then we will have Gopal Mitra UNICEF and we have a late change to the programme, so we are going to have Rachel Cassen from LEAP Ireland, our third panellist who will be arriving shortly.
Just a very brief introduction Dragana Ciric Milovanovic.  I totally mispronounced her name.  A psychologist and disability rights advocate, acting as European regional officer director of Disability Rights International an advocacy organisation dedication to the oversight of the Rights of Persons with Disabilities worldwide.  She was founder of mental disability rights initiative in Serbia an affiliate of Disability Rights International, an organisation founded back in 2008.  And the full bio for Dragana is in your programme.  Without further delay, I will hand you over to Dragana to make the first presentation for our panel this morning.
>>:  Thank you very much.  It's a real pleasure to be here today.  And returning to Galway.  A pleasure as always.  I will talk about the right to live independently, and being included in the community and just for the introduction, I don't think it's a coincidence that we started unpacking the Convention on the Rights of Persons with Disabilities with regard to children introducing on Article 12 and Article 19.  So having an agency, and also living in the community is a precondition for achieving all other rights guaranteed by the Convention along with Article 5 which is right to non‑discrimination.  But I believe the Article 12 and Article 19 are really crucial for enjoyment of all other human rights.
Disability Rights International has been documented human rights abuse in institutions for 30 years now.  We worked in South Eastern and Eastern Europe in many countries in Latin America, and started exposing abuses, something that was not visible and was not known when Disability Rights International was founded.  When we started working.  So people in institutions were not recognised, were not visible, and abuses were not ‑‑ people were not aware of all the abuses taking place in these segregated facilities.
Under the Convention on the Rights of Persons with Disabilities, when it comes to children, Article 19 actually right to live independently and being included in the community for children means to be able to grow up in a family and I think the best illustration for that was when Petra said the most important thing for her was that she had support from her family from the very beginning.  And recognising that for children, the crucial thing is to grow up in a family and have support of important adults in child's life is something that make inclusion at later age transition to adulthood possible, and without inclusion at the earliest age, and segregation that still takes place around the world, that is not really achievable.  And I will go back to why we are facing so many obstacles in realising the right to live independently being included in the community when we have all the international law and guarantees, why is it so hard to implement the right to be included in the community?
So first we started with really documenting abuses, very grave abuses in large institutions that were mainly currently still present in Eastern Europe.  But they were present everywhere.  We know that they existed in the United States, in all around the world, taking ‑‑ now taking different shapes and forms.  Abuses are unfortunately still present, and more than 10 million children and young people are still being placed in institutions of all kinds, large and small.  And even reforms that were taking place deinstitutionalise children of course left out children with disabilities, and the transformation itself really didn't happen the way we think should happen; that children were often not included in community, but rather transferred to smaller institutions and we have been working for the last five years documenting abuses now in group homes, something that's by the Convention on the rights of the child considered as appropriate or acceptable form of care for children, especially for children with disabilities that they still deem unable to live in the community.
So we are challenging this practice and CRPD is something that is offering us standards and some new standards that I will touch upon a little bit further in my presentation.
So what we witnessed in recent years is that countries take so‑called Band‑Aid approach or fast solutions of rather building smaller institutions, investing a lot of money, hundreds of millions of Euros for example in Bulgaria for example into building small group homes as a transition to community living.  What it proves to be is that children with disabilities are first left out of such reforms.  But even if they are transferred to small group homes, they stay there for all their lives.  So that's not a transition when it comes to children with disabilities, because there is no support to transition to adulthood and transition to independent living.  So they are able to exercise their right to be included in the community.
Also what we witnessed is one of the solutions is renaming the institutions and segregation takes many different forms.  We know that there are boarding schools that segregate children with disabilities and it is a form of institution.  So according to the Convention any placement of a child in a segregated setting is institutionalisation and that should not be negotiable.  Unfortunately standards still exist within the Convention on the rights of the child are making it a little bit difficult for us to implement the rights guaranteed by the CRPD.
So an alleged so say discrepancy between something that is written in the Convention on the rights of the child and the Convention on the Rights of Persons with Disabilities.  And yesterday Rosemary touched upon it, saying that there is no unified standard, which is not really true.  If we know that the Convention on the rights of the child recognises that there will be higher standards and that convention should be interpreted in line with this higher standards that we don't really have a conflict.  However, since the Convention on the rights of the child has been present for such long time, people still believe and because of widespread prejudice, that there are still children that cannot be deinstitutionalised and will have to remain in group placements of some kind.
According to the CRPD, the institution is any place that is not a family.  And that is something that we have been using in our advocacy trying to question governments but also donors not to support any kind of segregated placements for children.  And children are placed on different grounds but mostly because of poverty, and because of disability, either a child or a parent.  So apparently are placed in institutions only because there is no support in the community, because there is no access to education, health, because there is no opportunity to exercise all their rights, and we heard yesterday as well that when you are only able to access certain supports in institutions, that's not really a choice.  And guidelines on de‑institutionalisation that were developed and published last autumn in September 2022, are addressing this issue.
So there is also, besides discussing the choice, whether it can ever be a choice, that someone can be placed in an institution and deprive them of their liberty, including children, which is often used as an argument by service providers that are providing childcare, and residential services, it is used like well some children choose to live in an institution, whether that's a real choice and why it comes, why it happens, it's a completely different thing.
Another argument is commonly used, and there is of course a recognition that deinstitutionalisation takes time, and that it is subject to progressive realisation.  However, the element of discrimination on which children are being institutionalised is not something that is subject to progressive realisation.  It requires immediate ‑‑ it requires to be immediately addressed by the governments prohibiting any further institutionalisation of both children and adults, but for children, it is especially important because early institutionalisation and placement in institutions results in severe consequences of ‑‑ to the child development, and it's also applicable to all children, because institutions cause disabilities.  It's not just that children are placed in institutions on the basis of disabilities.  It is also the fact that institutions cause disabilities and children stay in segregated and isolated because of the neglect they ‑‑ and abuse they experienced early on in their childhood.
So I mentioned that to address the alleged conflict in international law CRPD committee first established the working group with the Committee on the rights of the child, trying to come together to a common understanding of the issues that they have found challenging in harmonising their ‑‑ especially their practice and recommendations that they're giving to government.  And residential care being one of the issues, has been part of that discussion.  Unfortunately they were not able to reach really meaningful understanding.  But at the same time we had COVID‑19 which just emphasises, emphasised the dangers of segregated settings, whether they are large or small, and we saw that COVID had enormous impact on right of children to live in the community.  But also to their education and all other consequences that happened as a result of this emergency in shape of COVID‑19.  And we are now seeing that similar to countries that are experiencing climate change consequences, that are experiencing armed conflict, my organisation is now involved in conflict in Ukraine where we are trying to influence the international funding that's going now towards Ukraine, to make sure that it's not going towards rebuilding of institutions, but rather to provide support to families to be able to keep their child and care for their child in the community.
So as a continuation of that process, the Committee on the Rights of Persons with Disabilities established the working group to develop guidelines on de‑institutionalisation.  Because despite understanding that institutionalisation presents abuse in itself and discrimination in itself, it was still a practice, and there was still huge barriers in implementing this right as already mentioned.  So despite a General Comment No 5 elaborating on the Article 19, on living independently being included in the community, and also guidelines on Article 14 on the prevention of liberty, there was still misunderstanding by Member States what are their obligations to make the right to live independently and be included in the community a reality for both children and adults with disabilities?
And one of the main things I think why this process was unique is that the Committee put up front, or wanted to listen to the voices of people who were, posed, survivors or people who are still in institutions.  Because all the plans for de‑institutionalisation are very often designed without participation of those who are actually affected by this practice.  And I think it made the process really unique, and it is in line with ‑‑ we all know the motto nothing about us without us, that has to be respected when it comes to children with disabilities in institutions who are often denied an opportunity at all to be heard and to speak about what they want, what are their wishes and preferences.
So the guidelines address several really important issues, including the issue of intersectionality, and how different characteristics affect the right of children and adults with disabilities to be included in the community.  And some of the things that the guidelines confirm for example that they confirm the dangers of institutions, that what it means for children really to be deprived of family life and opportunity to develop and be included and receive early intervention, inclusive education which all leads to lack of skills that are necessary for them to transition to adulthood and get employment.  So it is all really a life cycle that we need to look at, understanding that institutionalisation leads to deprivation of all other experiences that are necessary for independent living, and community inclusion.
The guidelines also talk about universal protections for all children and that goes back to what I mentioned that institutions while children with disabilities are predominantly placed, they also cause disabilities given when children are being placed when initially not having identified disability at the very beginning.
It also identifies elements that are needed to implement the right to be included and some of it is support for children with disabilities and families as early as possible, so importance of prevention of institutionalisation, that has to be incorporated and mainstreamed in all aspects of community living.  And even short placement outside of family can cause great suffering and emotional and physical impairments.
The second element that I would like to emphasise is the right for children with disabilities like all other children to be heard on matters that affect them.  And that their views are given due weight in accordance with their age and maturity and without discrimination based on disability or gender.  And that goes to the importance of participation in the very process of developing the guidelines where the Committee heard a lot of testimonies by and persons, including young people with disabilities.
What I also mention is the issue of choice and the guidelines confirm that children and adolescents with disabilities cannot choose to live in an institution.  As you cannot shoes to be abused and neglected.  So there is no real choice when the only choice is to be segregated and isolated.  So there is not something that we can at all consider as acceptable, despite ‑‑ and we can discuss that maybe in line with choice from the other lenses.  But there can be no choice really to live in an institution.  And young persons with disabilities should instead be offered an opportunity and receive support to choose to live independently if they don't want to live with their family, they need to have a choice to live independently with appropriate supports.  And bearing in mind again that independent living arrangements refer to all settings outside of residential institutions of all kinds.  So supported living that again relies on group placement of young persons with disabilities is not something that's acceptable by the Convention.
And what States should really do is develop a comprehensive support and mainstream services that are inclusive, that will enable inclusion in society of children and young people, and consequently adults with disabilities, because if we prevent institutionalisation at the early age, we will be able to prevent institutionalisation in the adulthood.
So things as accessible environment, transportation, information, communication, inclusive education, access to health, everything that we will be discussing later this week, these are all crucial really to achieving the right to live independently and being included in the community, and also inclusion in the community, the implementation of all these rights is not possible if we keep segregating and isolating children.
The guidelines itself, same as the Convention, same as any law, are not enough.  We have to use them.  These are tools that we as human rights disability advocates need to use and put pressure on governments, on international donors, which are playing significant role in many countries, supporting the ‑‑ deinstitutionalisation process, what are really things that they should support?  What are the recommendations that we have to give?  But the most importantly, we have to empower children and young people with disabilities to speak out and to advocate for their rights, and I also mean children in institutions which is challenging and very often because of that challenge, doesn't happen, but it doesn't mean that we should put all efforts that we can to be ‑‑ to make their voices heard.  Thank you.
>>:  Thank you very much Dragana, that was very comprehensive and detailed in relation to not just beyond the guidelines but also in relation to the guidelines on de‑institutionalisation.  And I am sure members of the audience will have questions and picking up on points to make for Dragana when we have the discussion after our next two speakers.  Next up is Gopal Mitra, who is joining us online.  He is Unicef's Global Lead on Disability and Development in the Programme Group based out of New York, UN headquarters where he provides strategic and technical leadership to deliver on the global commitments on disability and inclusion across the organisation.  Previously Gopal was a Senior Social Affairs Officer in the office of the Secretary General of the United Nations.  Hello Gopal.  Good morning to you in Ireland.
>>:  Very good morning, it's a pleasure to be part of this session, and I really enjoyed Dragana's reflections.  I am sorry, I couldn't be there with you all in person.
>>:  Next time, next time!   
>>:  Okay let me give some reflections on how what we see is happening, some of the efforts that are needed, some them underway, to enable children with disabilities to live independently and in their communities.
In 2021, UNICEF published a global data report on children with disabilities.  It's called seen, counted, included, please feel free to Google or I can send a link later on.  And that report revealed that not surprisingly that children with disabilities are faring badly in all major child well-being domains.  49 per cent more likely to never have attended school; 34 per cent more likely to be stunted.  And among many others worst outcomes.  And these directly have an impact on what we are discussing today.  That world faces multiple crises, the conflict in Ukraine, the cost of living cries, the climate crisis and I was told the COVID crisis ended, but it has left a huge impact and that puts people under a lot of stress, and we know that in times of crisis people with disabilities, children with disabilities and their families face disproportionate impact.
A study in Philippines has shown that families with children with disabilities has 40 to 80 per cent extra costs.  A study in Madagascar shows that families are very likely to accepted their children with disabilities to live with extended families who are better off and who have better access to services.
A survey in Kenya shows that 40 per cent of the mothers saying that they were pressurised by their community to kill their children with disabilities.  So that is the situation.  Article 19 clearly states that persons with disabilities including children with disabilities cannot be segregated.  And it tells two other important things which I am going to ‑‑ my reflections will focus on: Article 19 also clearly obliges States to make services available for persons with disabilities in the families and children with disabilities in the families and the communities.  It also states clearly that support services and services in the community that is meant for the general population should also be equally accessible to persons with disabilities.  UNICEF has been last year, the data shows that it has worked in more than 100 countries to support care reforms and UNICEF's work on care reforms is based on three priorities: first, it's to prevent separation of children.  The second, is to prioritise alternative care for children who need it.  And the third is to end institutionalisation of children with disabilities.
And our strategic plan, our child protection strategy as well as the newly launched disability inclusion policy and strategy from February this year clearly articulates that.  In fact one of the six strategy priorities of the disability inclusion policy on strategy is to ensure community based care and support, and to further invest energy to strengthen it.  There are several others which I am going to refer to in the course of my reflections.
Now when we are talking about the approach of care reforms, it's based on a five point agenda which brings together institution of laws, policies, programmes and services in child protection, but overall in the broader context of education, social protection and health.  And I think Dragana referred to several of them in course of her presentation.
And the first of the five points is to ensure family laws policies services and programmes that are family responsive and that prevent separation of children through support to families in a meaningful way.
The second is to create an economy that values care for parents, for families, for grandparents through programmes, through services, social protection, et cetera.
The third is to bring more resources as investment towards family based care and support services.  And the fourth is to collect data and strengthen data on children who are outside family care.  And the fifth is to strengthen social child protection systems and build the capacity of social service workforce.  Now to give you a few examples, for example, in South Africa, UNICEF did an audit of the migrant children alternative care.  And a mapping was done which detected 700 children who were in alternative care, and specific initiatives were undertaken to collect them to case management and for referral and access to other services.  In Mozambique, UNICEF did a feasibility study to transfer the national registry on care into electronic format, it is being piloted.  This resulted not only in ‑‑ this resulted in reintegration of children with disabilities with their families, but also provided a systematic projectory by converting and by better data management.  In Cambodia for example UNICEF launched a big behaviour change campaign to change social norms.  More than 10,000 families, schoolteachers, school directors were involved.  And which had a significant focus on children with disabilities.
In Nepal for example, during COVID, the focus was to ‑‑ on families of children with disabilities who lost their carers due to migration, due to COVID‑19.  And to identify families who had the bigger burden of care and to support them with services.
In Greece for example, UNICEF is working, has produced guidelines and tools for (indiscernible) utilisation, and has launched campaigns along with the Prime Minister's office on foster care.  So there are a lot of efforts underway.  UNICEF has also developing a child protection competency framework for frontline workers that will enable better management of the workforce and building their capacity.
Along with all of them, one area which is being globally gaining a lot of traction is the care agenda.  And UNICEF believes that proper meaningful care and support services in the community will go a long way to enable children with disabilities to live independently and in the families and in the communities.
Early identification and assessment of children with disabilities is under way in many countries to find out how many children with disabilities were there, and what are the rights and needs, needs mostly.
There are programmes under way in Uganda, in Peru, in several countries we are trying to send them the national information management systems so that children with disabilities when they enter into the information system are also better connected to services.  Inclusive education is a big part of this puzzle.  In more than 120 countries, UNICEF is working to strengthen inclusive education, because we know historically the opportunity to provide education was one of the reasons children with disabilities were sent to institutions.  So we really need to strengthen and inclusive education, and we have seen some progress in this area, and it is also important because when children with disabilities are not going to school, there is ‑‑ the burden of care for the family also increases.
There is cash transfers is a vital element of this approach.  Meaningful cash transfers to families often result families being able to better support their children and prevent institutionalisation.
In 2022, UNICEF supported 794,000 children with disabilities and their families with cash transfers and there is a very good programme in Syria for example, where children with disabilities and their families ‑‑ there is a cash transfer programme for them, which takes into account the additional cost of disability.
Another important issue is provisioning of assistive technology.  Because we know that assistive technology increases the independence of children and adults with disabilities.  And it requires ‑‑ and it reduces the requirement for human assistance.  So UNICEF is using its programme as well as procurement capacity to significantly enhance the provisioning of assistive technology and devices for children with disabilities.
One area where we see a big gap is the provisioning of critical services like personal assistants, respite care, such facilities, sign language interpreters, and the community ‑‑ at the community level at a place where children with disabilities and people with disabilities live.  There are some innovative examples which we have seen where public works are paid for respite care and so on for children with disabilities within families, but this area needs to be further drilled into and to understand and to develop a road map of how such publicly based services can be provided.  So UNICEF in 2022, 2023, February launched its comprehensive visibility inclusion policy and strategy aiming to significantly accelerate and scale up disability inclusion across its programmes and internal operations.  There are six priorities and I will end with them, but first is to prevent stigma and discrimination, violence neglect and abuse of children with disabilities, a lot of which happens within institutional settings.  Strengthen inclusive and accessible programmes and infrastructure.  Strengthen provisioning of community care services, and support.  Strengthen provisioning of assistive technology.  Increase investment and action on disability inclusive action and significantly increase involvement of children and adults with disabilities across our world.
On the request of the CRPD committee in 2015, UNICEF developed a public ‑‑ guidelines on consulting children with disabilities which has become very popular in the organisation in country level and countries are using it.  We did a mapping in east Asia and Pacific to see how UNICEF country offices are working with organisations of persons with disabilities, and we found that over  10 per cent of our country offices are engaging, quite significantly many of them, with organisations of persons with disabilities, because we feel that this connection and this relationship is really important.  And the one that I spoke about UNICEF is done in closed collaboration with governments as well as with civil society and the networks that are there on the ground both nationally and globally.
I will stop there, and I will be happy to answer any questions.
>>:  Gopal, many thinks, you are getting a signed round of applause there in the room here.  And I am sure with others watching on Zoom online.
Now we will move to our final speaker of this panel on independent living and being included in the community, and we are grateful to Rachel for joining us at short notice.  Rachel Cassen is the director of leap social enterprise which empowers families to take action for an inclusive life and leap works with families to build their knowledge, capacity and skills and to challenge existing attitudes and beliefs.  Rachel has served on various government committees including on transforming lives and the task force on personalised budget.  Over to Rachel to share her thoughts on independent living ‑‑ living independently and being included in the community. 
>>:  How long have I got.
>>:  As long as you wish, well 20 minutes maximum!  I know it's short notice
>>:  Can you give me a notice when I have got five minutes left, thank you very much.  Good morning everybody.  Great to be here today, and hi to everybody online also.  So I was to be part of a panel later on, but I have just jumped in here because I believe someone became unavailable at short notice, so I am just trying to put a few thoughts together that will add value to the previous two speakers' presentations.  So I spoke with Eilionóir and thought I might share a little bit with you all about an initiative that my organisation took during the last part of COVID and that is an inclusive neighbourhoods initiative in the small town in Westmeath where LEAP has opened their HQ.  And we bought this property during COVID, actually it's quite a nice story.  We had a little piece of money kind of growing in the bank, very small amount of money, because we weren't able to travel like all of you during COVID, we weren't able to run workshops.  Our only cost I think was our Zoom subscription.  I am sure that sounds very familiar.  So we managed to put that together as a deposit for a property in rural Westmeath.  For those of you who aren't familiar with Ireland, that's right in the middle of the country, very much a farming community, quite old fashioned.  And our town, like many rural towns, had experienced a hallowing out.  There was lots of internal emigration and young people leaving in their droves to go and seek better lives elsewhere.  So lots of derelict housing around the town square.  28 per cent of properties were derelict.  I am happy to report that since then, the hotel which had been closed for a number of years, and was starting to grow plants out of its roof and so on, has been re‑opened, so that's about 7 per cent right there has come back into usage which is super.  But it's still a place where you need money to go, and not everybody can sit in a hotel for more than an hour and keep paying to have a fresh coffee or a fresh tea or whatever.  So we were looking alongside opening up our HQ for LEAP, and until then LEAP had operated with a laptop and a smart phone and driven around the country, it's amazing what you can do as a small social enterprise with those three things ‑‑ a car, a laptop and a smart phone.  So we had done that for about ten years but got quite tired of it.  We got our first building and realised there is a great opportunity here to set up a community enterprise.  So we had half an acre of land.  We had a cottage that was in bits.  And we had a hall, 80 square metres.  Quite a substantial sized hall.  So we decided that we were going to look at an inclusive neighbourhoods initiative.  What we mean by that is a project where everybody is welcome, so we started off thinking about what that would look like, what we would do, and what sort of principles we would set up the project around.  And then we managed to invite nine neighbours, including two of us from LEAP to set up an association and we began to work with those neighbours, very ordinary people, some of whom had arrived in this small town during COVID, had young children and knew nobody, and invited to sit with us and think about what this inclusive neighbourhoods initiative would look like.
Fast forward to today, just over a year later, it's extraordinary, having run LEAP for 12 years on what might partner would call the clippings of tin, in other words absolutely bugger all money; to date the water street association has managed to attract quite a large six figure sum of funding.  So that was the first thing that really interested us.  Why is it when we step out of the space of talking around disabled children and their families into a wider kind of a community development type space, how is it that suddenly funding is coming from all over the place?  Really interesting departments we had never ‑‑ we hadn't had anything to do with before.  For the 12 years we had been running LEAP, it was the HSE, for those of you who know Ireland and where disability funding, that's the Health Service Executive, very much a medical model.  Suddenly we are getting funding from I don't know the Heritage Council, the Arts Council, well creative Westmeath which is very similar to Arts Council type funding.  And biodiversity organisations, all sorts of organisations were interested in what we were doing as we talked about building community.  Now I was talking to one of our local Councillors, County Councillors recently and I said yeah we are really interested in new roles in the community, like community builders.  And he said oh right Rachel, so you want a list of tradesmen?  And I was like no, no!  That's not what I am talking about.  Community building, you know community navigators, community connectors, whatever you want to call them.  I don't really use the term soft roles any more around people and families because they're not soft, are they.  We have just had research in that shows Ireland in fact has the highest reported rates of loneliness of anywhere else in Europe.  So this is, you know, this is quite staggering.  And everybody I have said that too, they're like really?  Ireland, sure aren't we very friendly, haven't we got a welcome for everybody?  And there is all these kind of ideas about Irish society, but actually guess who is the loneliest?  Who would you think?  It's young people right, it's actually people under 30.  That's also quite interesting, because there is lots of stereotypes too about loneliness, isn't there, that it's older people, sad little old ladies sitting at home knitting and supping tea, that's the stereotype.  But actually it's younger people.  So I digress.
So the water street association is about building community for everybody, and within the year and a couple of months that we have opened our doors, we have set up a number of things, let's call them things, and one of our principles is that we are not there to provide things as entertainment for the community, we are there to ask neighbours if you and one or two of your friends did something around here to make life even better, what would that look like?  And behind it all, we are as ever we are in LEAP, completely committed to inclusion.  So we actively encourage everybody to get involved in everything we do.  So far the most success we have had with that is with children and young people, which ties in nicely here.  So we have been running a number of week long summer camps for children and young people, and from the community garden that we have developed, the young people are encouraged to pick some salad leaves to add to their dinner that they're making, their tomato sauce and pasta and hopefully we have some of our own tomatoes and other veg to add to the sauce.  And this year, we are doing two weeks of outdoor eco art camps.  So the theme is biodiversity, the children will be creating a mural, there is lots of lovely things happening and we have got one of the association members, a South African artist who is ‑‑ would describe herself as neuro divergent, she is running the two weeks of art classes.  They sold out within a day.  Because we kept the price I think it's €25 for the week.  And parents kept saying is that for the day?  And we said no, no, that's for the week.  And because we have got a little bit of funding, we can keep the costs low, but as you know, those of you who have children or nieces or nephews, and live in Ireland, the cost of summer camps for children is ‑‑ can be up to €140 per week.  So 25 or 30 is very, very low.  And what we found last year was that 20 per cent of the young people coming to the art camps had a disability.  So that was great, so we didn't mention and we don't mention, and you can feedback to me whether you think this is an idea or not, because really at this point, we are just trying out some ideas, we didn't mention anything about disability and we have decided unless people come to us and they absolutely say they need a separate space, then we are going to try and make everything universal, open to everybody.  So that's what we have been doing at the moment, but we are very open to feedback from our neighbours, from the wider community and obviously from you here now as we share some of what we have been doing.
So where did this all come from?  I suppose during COVID we realised a few things.  I am just going to backtrack a little bit.  LEAP is a family led organisation.  During COVID LEAP stewarded into existence, our first inclusive neighbourhoods initiative called the water street association.  So LEAP invests in a network of families because we believe families are foundational in their capacity to pursue inclusive lives, and to drive social change.  This is the point where I look down a lot, because I am a visual thinker and I am not using slides, so I am reading a little bit to you now from slides here now that I would have otherwise have had up here, so I apologise for that.
During COVID, we saw families in our network, it's the first time in 100 years that services just closed.  They just shut down.  So families were absolutely desperate in many situations.  And the services just showed them the hard face, really they did.  The staff kept getting paid.  But no services were forthcoming.  Now there was Zoom activity.  Okay, but we all know that that's a very poor substitute for actual services.  So families were desperate, really, really desperate in some cases to get assistance and we were advocating at the highest level to Leo Varadkar, and to Ministers in the government at the time to actually give cash money, much as was the previous speaker Gopal, much as Gopal was talking about cash assistance, hard cash, to families, because that's what they were saying they needed, plus some equipment into the home.  But no, nothing.  Nothing was forthcoming.  So we began to realise that families who ‑‑ we began to see that families who were more connected to their community were more resilient to these closures and were coping better and it was a horrible time for everybody, absolutely horrible time for everybody.  So we thought about that and we thought about beginning with this first initiative to actually create inclusive neighbourhoods, and you might say to me well neighbourhoods are inclusive anyway, and I would love to hear about your inclusive neighbourhood, but we had found there was both types of discrimination I suppose.  If you call indifference discrimination, that was very, very prevalent in our small community, that families were living very much hidden in plain sight in our community.  They had withdrawn from social interaction because they had experienced rejection in community and ordinary clubs and groups in community, in schools in community.  And they weren't coming in and connecting to whatever club or group they might led by their child's likes and interests.  So for example, in our small town, and all around Ireland, GAA, the Gaelic Athletic Association is huge.  But it's a competitive sporting organisation.  So you have got to be good at hurling and you have got to be good at the different sports that they offer.  And you have got to be really into kind of training a lot and that doesn't suit a lot of children and young people and it doesn't suit some children with disabilities.  So what we are hoping ultimately is that we will spark interest and ambition in other communities led by families that similar projects will open, so families in Athenry are very interested in doing something like this.  Families in Athboy in Co Meath.  So Athenry is Co Galway by the way.  Athboy is a small town in Co Meath.  So there is a history to this.  So again at the beginning of COVID, 18 of us from around the country did a six‑week online course is Asset Based Community Development.  So looking at the whole strengths, assets, gifts of a community, including all sorts of things you wouldn't think about.  It was led by Cormac Russell.  He said ‑‑ and he is working with John McKnight, who many of you would know is the father of Asset Based Community Development.  He is now I think in his late 80s or maybe 90, still living in the State, still writing about Asset Based Community Development.  John and Cormac would often say in all their years working in this field and they've travelled all over the world, worked with many governments and so on, that they've rarely seen Asset Based Community Development that is successful, particularly in including people with intellectual disabilities.  So from day 1 that was our challenge.  We are thinking well what can we do different here?  The biggest challenge we are finding is that services have colonised those individuals and their families, and it's actually really, really hard to hold that line where we say okay at the community garden every Saturday, sure if Mary is really interested in trying some gardening beyond those geraniums she's growing on heroin dough sill, Mary can come, yeah, you can come as her supporter, but you are not bringing the whole bus, you are not bringing the whole group home.  This is what we are finding is quite challenging, that we don't want the water street association to become a disability service centre.  So we are trying to include people in typical proportions, that's not the right phrase, what do I mean?  The ways ‑‑ what's the phrase, somebody help me out here, what's the phrase I am looking for.
>>:  Proportionate to society.
>>:  Reflective of society, thank you Colm.  So trying to explain that can sometimes take a long time.  But what we are trying to avoid is that scenario which we see in services quite a lot whereby let's say there is a new ‑‑ a lovely new knitting group starts up in the local parish centre, and the service hear about it and they go great, let's bring all the ladies.  So they bring all the ladies, and then everybody else leaves.  So that's not community inclusion.  So community inclusion is an art form and yeah we are finding it hard, and we have got very little toll tell you beyond what I have just told you already, which is with children and young people whose families are delighted that things are open, and we don't advertise any different from any other summer camp or any other event, when they arrive they're delighted to see that their children are very warmly welcomed and are supported very discreetly by those of us on the association to make sure that they have an optimal experience.  They're delighted to see that and why wouldn't they be?  Any of us would feel very, very happy in that regard.  Also then the community garden, we have interestingly a lot of people with mental health issues coming to that.  And we have, at times, yeah nearly had to separate people over the cabbage patch.  There will be big fights, big rows.  One time there was a really huge row between a woman in her late 80s and a man in his 50s about whose fault it was we hadn't thinned the beetroot out sufficiently.  And people can get very, very heated, very, very heated.  So holding that space and not being ‑‑ not ever wanting to expel anyone is very, very difficult.  And I had to laugh, I am going to say this, I talked about whether I would say this, but I decided I would say.  I talked to my colleague about this.  When I saw the discord rules, I thought oh golly, imagine if I tried to introduce those into the water street association.  People would just ‑‑ we are not there, we are not there.  And we do have ‑‑ we had a horrible incident with an older lady recently where she used a really awful ‑‑ the most awful word, and what do you do?  So we are just trying ‑‑ have you heard of socio‑ocracy?  Have a look at it, it's a way of ‑‑ I suppose it's a democratic process for organisations, a way of making decisions, so I spoke last week at the making neighbourhoods seminar in project arts centre in Dublin, and a lot of people looking at making neighbourhoods and place making and a lot of them were architects and designers, and so on.  But they're not community builders.  And they're not necessarily ‑‑ they're very good at the process around buildings but they're not so strong on the people side or the process with people.  I am getting a sign now that I should finish, I hope that wasn't too desperately rambley, but thank you for listening to me, thank you. 
>>:  And we signed the applause Rachel.  Many thanks Rachel and thanks again for stepping in at short notice, very interesting approach, very interesting association that you set up over a year ago, and the fact that it is inclusive, but not obviously just only for persons with disabilities.  So it's inclusive in a more broader way.  I was struck by the fact of looking at any summer camp for €140 or less of the father of two children living in Dublin!  And €25 is unbelievable value.  The two kids are extremely good at art, but they obviously got it off their mother, certainly not their father!
We will open things to the floor, so we have some questions, we have again two roving mics, and we will try to maybe group questions, and I hope that Gopal can hear us and is still linked in.  So we have questions from the floor.
>>:  This is for Rachel, and it's a response to her question on accessibility and in terms of do you advertise that you are accessible when you don't want to alienate people who are not disabled.  And I have a very detailed thought on that, but to summarise it quickly, 68 per cent of people who identified as being disabled in a recent survey said if no accessibility information is provided on a website, they will assume that no accessibility measures in Ireland have been taking place and will not go to the event for fear they won't be able to get in basically or enjoy it or appreciate it.  So I would say have an accessibility ‑‑ just a page on the website or note somewhere, but it doesn't have to be stressed that much, just so here's someone to contact so they know to get more details then.
My second comment, sorry, I know you are not meant to do comments ‑‑
>>:  Can I just respond to that because I will forget what you said first of all, can you hear me?
>>:  There is another mic, we have two mics.
>>:  And then I will take your second point, thank you for that, that's really helpful.  You remember I said the cottage was in bits, well, the hall was even worse, so we are talking about water running down the inside walls and stuff like that.  So we got 25,000 to make the hall accessible to people with physical disabilities, and we used as a consultant the daughter of one of the families that we have worked with for many, many years.  So she came down, she uses a big heavy power chair.  And we have now got to the point where we can actually add that to our events because before we couldn't, because you couldn't get into the building.  There was a lip on it and the toilet, the bathroom wasn't accessible.  So we are quietly working away at that until we are at such a level.  But we need people like you actually to come and visit and say to us, because I don't have a disability.  My father is autistic, both my sons are autistic.  But I don't have a disability so like I need ‑‑ and none of us have a physical disability in the organisation.  But families attached to LEAP who regularly use the building are helping us consulting around what works.  But thank you.  I am happy to take your second point now.  I just wouldn't have remembered what you said if you had gone on to the second one.
>>:  That's fair enough.  And we do have two mics, so maybe if we could give Rachel a second mic here, perfect.
>>:  Thank you for your response.  I think it's brilliant that you are being led by the community itself, you say that comes through really strongly.
The second thing that I would say is about universal design for learning, or UDL.  You mentioned ‑‑  universal design, and I think it's brilliant, it came about from an architect who had a relative in an electric wheelchair.  But it's grown from universal design of buildings on to universal design for learning and for courses.  If you had interest in making your content and your teaching and your teaching methods more inclusive, particularly for disabilities, I would recommend the ARK on AHEAD website, completely free.  They have one on accessible comms and that would help
>>:  AORK.
>>:  No, ARK, accessibility resources and know how.
>>:  And that's on AHEAD's website, did you say.
>>:  Yeah, and it's free.  And yeah, just generally I am really taken aback by how well you seem to serve the community and what good community builders you seem to be in the organisation.  Particularly when you said that you were discreetly putting in the supports for individuals.  I have a little drawing here, it's terrible, but it's of an equilateral triangle and in that, there are three horizontal sections.  So on the top section, there is like a little bit labelled individuals.  And then the middle section says group and then the bottom section says UDL.  So what that means is with universal design for learning, what you are ‑‑ what most people are aiming for when they apply it is that to the greatest extent possible people can engage with your course without any adaptations.  That means that are captions automatically enabled on Zoom rather than only enabling captions if you have an attendee with an auditory processing disorder who has asked for it.  And then the wider you can cast that net of universal design for learning, the less you need the group supports which are like a level up, which would be people with similar needs put together that might need a little more time in exams.  Obviously you don't have exams, but a little extension on deadlines for a group of people who are time blindness for example.
And then individual supports is just acknowledging that no matter how much we adapt, there is always going to be certain things that don't quite get met and you are led by your community, so I can only imagine that you already do and make the individual accommodations, but it's just acknowledging  that sometimes they're necessary.  Sorry for my comment, not question
>>:  It's really interesting, and actually in terms of the school that is on our street, because we are creating an outdoor classroom with a wildlife pond and three bay composter and all this kind of stuff and working with the local national school, and they started bringing up the ‑‑ we have all these autism units in this country and most people think they're a good thing, even some of the advocacy organisations which I find really, really surprising.  But so the school started bringing up children with autism and we said hey, here's the thing, why don't you just bring up children.  So they did, they started bringing up children.  But unfortunately the only way national schools, primary schools in this country can get more funding at the minute or the main way is by building extra space, by building autism units, what they're calling ASD units so they've just built a really big black one, it's horrible, and I am in a real dilemma, because this Thursday they've invited us to the opening.  And on the one hand we spent the last year trying to build really good community relations with the school and the principal, and talking to him about inclusion, and we sent him our submission to the EPSEN report, the education on persons with special education needs report because it's being reviewed at the minute, and it was quite radical, it was for inclusive education and he read it and made some comments.  But yeah, so he has invited us to the opening of his unit and I don't want to ruin the relationship by saying I am not going to go, but if I go, I think I will wear black
>>:  That's a difficult one.  Because you have to have integrity, but also you have worked so hard to build that relationship, I have no idea what I would do to be honest.
>>:  I really don't want to celebrate it.
>>:  Maybe what you could do is if the relationship is strong enough, have a conversation and say can you rename it from ASD, autism spectrum disorder to autistic something and if they're willing to meet you halfway on that, maybe that would be easier.  But I don't know.
>>:  Yeah.
>>:  Anyway thank you.
>>:  Thanks Laocin, thanks Rachel.  We have a question down the front here, I think.
>>:  Good afternoon participants.  I am from (indiscernible) in Uganda.  First of all I would like to thank the organisers of this summer conference.  Secondly the Consular of the Ireland Embassy for allowing me not to be denied be given a visa to come and participate.  I thank you so much, because many people do submit their applications and they are denied, but on my side, I thank the Consular.  He gave me the visa so that I I come to participate in this conference.  By giving me my biography, I (indiscernible) that I was not going blind but during the war at the age of 18, I went blind because of the war.  I cried and I cried.  My education stopped there.  I went back to the village because I was studying from the ‑‑ from town.  Then I went back to my parents.  I started crying.  Because I have never seen a blind person at that stage.
What I did when they brought me affirmative action under the (indiscernible) of Uganda, I came out and I contested as a political leader.  And I work as a politician.  I represent persons with disabilities in the Local Government, local couple five.  I am chairperson for the visually impaired women in Uganda and a human rights activist.  I come to do that because of the discrimination which I faced when I went blind.
First of all, I was marginalised within the community.  There was no blind person in that community.  I was only the one.  And the older the parents of able bodied persons, were denying me, they were sending me away.  They didn't hear what I am saying.  They can't agree with me.  So I said that no, I have to contest since they have brought affirmative action.  Let me go and I represent persons with disabilities.
When I reached there, I saw that children with disabilities are denied education.  Secondly, they are denied their health.  If you got hospitals, they are side lined.  They cannot ‑‑ they are put in lanes, they are not allowed to be ‑‑ get (indiscernible).  So what we did is to air out to create awareness to the health workers to create awareness to teachers, to create awareness to political leaders, create awareness to parents of children with disabilities.  So this conference has also brought me to ‑‑ has brought me to ‑‑ it's like ‑‑ an eye opener to me.  I don't know what I am doing in Uganda.  What do we do to create awareness to parents of children with disabilities, it is to organise international days for disability children's.  We invite parents, we invite children with different disabilities.  We invite local leaders, politicians, teachers, and everyone from the community.  We bring them together.  We speak to them.  We want to show that also those children look like any other child.  Who you have in your family.  So what we do is to give out a gift like blankets, mattresses, white canes to the blind, braille machines to those who are blind and to show them that for us, we love those children.  Do not discriminate them.  Do not run away from them.  But you have to bring them together.  So from within that convention or that day, for the disabled, we also give out speeches concerning children with a disabilities.  So I would like to thank the panellist, the three panellists because they have brought what challenges we face in the community and experience and achievements what we have seen.  So good the speeches.  So I would also thank madam Joanne who agreed, who joined the hands with us to organise this day.  And allowed us to come and to participate.  So we are going to take this information back to our countries, or to our communities, or to our government to show that no one can be left behind.  Considering one of the Sustainable Development Goals since Uganda and the other countries have signed the Convention on Rights of Persons with Disabilities we have not to ‑‑ we do not ‑‑ we cannot live like that convention on paper or we have to implement it so that we can take the ‑‑ we can lift up the (indiscernible) we can lift up the CWDs to be brought on to.  So even the organisation is like a right for the world, right for the word disability, right for international law, UNICEF.  Whenever we submit in our proposals, please consider them so that we take it a voice to bring together children with disability.  Thank you. 
>>:  Thank you very much.  There is a round of applause signed there.  And it is great to have a local councillor representative, a human rights activist such as yourself from Uganda, we are grateful to our friends in foreign affairs Embassy over there for assisting with that visa.  Thank you for that personal testimony.  Are there any questions or other points from the floor?  We have a couple of questions have come in online, but I will take ... 
>>:  Thank you sir.  This is for UNICEF.  There is one size fits all strategy when it comes to awareness.  I will just give you a background from where I come from and most of the African countries.  We are blamed for our children's disability.  And it makes it very hard for the communities to accept us and include us.  So unless that is dealt with, we need more awareness going into the community.  Because it forces us as parents to hide our children, and not to be vocal, because we are seen as sinners.  We have done bad things when maybe we were expecting this child, or during that time of conception.  So it makes it very hard for us to go out and begin to actually accept the child's condition.  And getting services.  And because of that also our governments tend to take a very long time to diagnose which also makes us get included, excluded from the communities.  So I like to ask you Mr Gopal that let's not come with a size ‑‑ all size fits all strategy.  Let's try and look at the cultural stereotypes that we have and try and customise it for each country and also in terms of assistive devices, there is no how, we can live independently.  Example is right in front of me.  Look at the state of this wheelchair.  There are no ties.  How do we expect her to wheel around in a wheelchair like this?  It's something that we cannot let it happen.  And I am urging you sir to try and help us and also in terms of secondary impairments, if you don't have proper assistive devices, it's going to cause secondary impairments.  So sorry I am getting emotional now.  It's something that we really need to look at for each country.  Like for my country, my daughter doesn't have a wheelchair.  It means that each year and each day that goes by, she is getting worse because of her positions and she is being excluded from the community.  We still have buildings that are being built to date that are not accessible.  Why are those buildings being approved by our governments and our local councils in those days?  Ten years ago, we would approve them, but not in this day and age.  So let's make it a rule of thumb that we don't let these things happen in future.  Thank you very much guys.
>>:  Thank you, and I might ask Gopal to pick up on the first question was around contextualised or bespoke strategies for different countries, Gopal.
>>:  Absolutely, and let me start by saying that when you said you feel emotional and I too feel emotional along with you.  Right.  As a person with a disability, I work in a big organisation, and at the end of the day I can relate to it, and I just wanted to start by saying that, and it's absolutely fine to feel emotional, and yeah.  I feel emotional listening to you.  Yeah.  You have raised several points.  First of all, the one size fits all, and I totally agree with you, and that we cannot have a one size fits all approach, because persons with disabilities, we are as heterogeneous a group as the society itself as regards our multiple identities including our impairment.  That's the reason while I was speaking, one thing that is extremely important, anything that they design in terms of programmes or campaigns or social media communications, it should be and to a great extent it is, not totally there, that it is done in conjunction with local organisations, national organisations of persons with disabilities.  Because as the representative organisation representing the constituencies, you have the actual knowledge of the context, of the challenges and the specificities and the nuances, and that is how we try to address it.
Secondly I want to say that at UNICEF we are finalising a social behaviour change toolkit addressing rights of children with disabilities and we will be piloting it again to make it context specific before finalising and piloting in several countries to see how we drill down that context specificness into our approaches.  But absolutely great point.
The second point is on assistive devices.  And I totally agree with you.  At this point, three to 10 per cent of people in developing and low and middle income countries have access to assistive devices and in UNICEF we are trying to do it ‑‑ we cannot solve the problem in one day, but for example two things I want to highlight is we are trying to put into the health system, in the social protection system, into the location system, the budgets on system devices.  And at the same time we are also working with vendors, with suppliers.  For example, let me give you a concrete example, a good hearing aid, good quality hearing aid costs in between 800 to $2,000.  How many people with disabilities can afford that?  Extremely few or not.  So we work with supplier producers of hearing aids last year.  And with procurement guarantees and so on, we will bring down ‑‑ we were able to bring down the price of the same hearing aid between 80 and $120.  And at this point of time, we have a programme in Rwanda where more than 700 children are being fitted with those hearing aids, including the assessment and the other type of supports.
So work is happening.  We are nowhere close to realising the full need, but we are doing all that we can to assure that we introduce devices in our catalogues with low prices, UNICEF, so that governments can also procure, we are working with governments on that.
And the last point on accessibility as we all know, it is a pre‑condition for inclusion.  And at UNICEF, we have an executive ‑‑ director on accessibility with the highest level of policy guidance and all infrastructure that UNICEF supports, there is a strict code of accessibility and when the plans and the budget approval stage, and the people who approve, they specifically look for it.  To what extent accessibility has been complied with?  And that is not only for new construction, for remodelling, of existing facilities also.  But there is a lot of work yet to be done and ‑‑ but what I wanted to bring out is that we are trying our level best to take actions on all this, and all the questions I have received, thank you so much for sharing your reflections.
>>:  Thank you Gopal.  I am going to take a couple of the questions that have come in online.  There is a question from Mary Maher, I think it's for myself.  The national disability inclusion strategy 2017 to 2021, Ireland's national disability inclusion strategy didn't meet many of its targets for disabled people in particular regarding employment, employment in the public sector and inclusive education.  How can the department ensure the revised or the new national Disability Strategy will be monitored closely to achieve targets in line with the UN Convention and disabled people and people with lived experience must be part of the consultation and the monitoring process.  So they're very good questions.
And we are thinking hard about them both and other questions at the moment.  We have just begun the process of developing the next national Disability Strategy which will be our CRPD implementation plan, and absolutely people with disabilities will be at the core of our engagement and consultation.  And just to say in particular where we are in the department, we are obviously the department of youth affairs as well as other things, and we have ‑‑ we are particularly strong in Ireland on participation.  We are one of the first countries to have a participation strategy for ‑‑ framework for engagement and consultation with children in decision‑making.  Children and young people.  And we will be designing and taking forward engagement and consultation on children and young people with disabilities as part of the development of the next national Disability Strategy.
In terms of delivery, monitoring, overseeing, and ensuring progress with the next strategy, I think there is a few changes maybe.  Anyone who would know the strategy which concluded, it was extended by a year and concluded at the end of last year, there was an awful lot of different measures and actions and tasks.  I don't know how many, there was at least 120, there could have been more in fact because there was several in under some of those.  There was an awful lot ‑‑ I think we will focus more in terms of some clear priorities and a higher scale of ambition and then having clear ownership like I mentioned in the first session.  I note the fact that it was mentioned in the question about employment or employment in the public sector or inclusive education.  They're all issues that cut across the different departments lead on, and it's very important that we have strong buy‑in across government, strong ownership and a strong level of ambition and I think that will make the oversight and the monitoring the delivery, that much easier, but of course persons with disabilities also need to be involved and lived experience needs to be part of the monitoring as well as the consultation.  So I hope that answers Mary's question.
There was another question from Liberia online.  This might be for Dragana perhaps.  It's a question on prevention and prevention was mentioned by yourself and Gopal.  How do we ensure that people with disabilities can continue to live and work in their communities and to stay out of institutions, the questioner has stay out of expenses Medicaid funded institutions such as nursing homes.  Do you want to pick up on that?
>>:  Thank you.  Thank you for this question.  And of course prevention is definitely necessary if we want to close down institutions because we have to stop new admissions and that's something that's true for children, but also for people ‑‑ for adults with disabilities.  When I was talking about children, it's really important to have inclusive early intervention, and inclusive education which are some preventative mechanisms, but definitely necessary to ensure that families and children are getting support they need to keep their children at home, so that children can grow up in loving and supportive environments.  And that is a pre‑condition that they grow up into adults that can have all the skills and capacities and networks which are really important, social networks available that can support them to stay in the community and live independently.  I believe that what's necessary when it comes to prevention is really to close doors of institutions.  We have to say there are no new admissions, because as long as there is any exception, we know that that will lead to more and more people being institutionalised as long as that remains an option.  So first thing to be done is to say that there are no more institutionalisation allowed.  So close the doors and then create opportunities in the community for people who are already institutionalised to be able to transition.  And leave institutions.  So definitely prevention of any further institutionalisation is number 1 step and that can be done immediately.  There is no progressive realisation to when it comes to banning new admissions.  But yeah, definitely that's something that has to be done before we even engage in de‑institutionalisation when it comes to people who are already in institutions.
>>:  Thanks.  Thanks a million Dragana and I hope that's a good answer for the question from Liberia which came in online.  Okay, do we have other questions from the audience, we have a last few minutes, I will ask people to try to be quick.  We have a question here in the middle. 
>>:  Hello everybody.  So my question is actually to Gopal.  I am an international aid work.  In your presentation where you referred to working with the community leveraging partnership would be an ideal to address the concerns that we are especially supporting persons with disabilities.  But recently we done an evidence within many of the international organisations and we found that the funding envelopes and the compliance procedures are usually a barrier when working with local partners, I am talking about the UN funding system.  And the underrepresented groups like OPDs for its objection for persons with disabilities don't have access to UN funding.  And UN should allocate some of the funding streams to such groups so that we can support them.  So many times we talk about these concerns, but at the same time when it comes for localisation and working with local partners, the funding is a barrier, and we really need to foster this partnership through funding allocations.  That's something I would like you to reflect on and I hope there will be changes but it is something that we want to point on.  Thank you. 
>>:  Okay Gopal, do you want to pick up on that?
>>:  Yeah, thank you so much, that's an extremely relevant question and to start with, I agree with your reflection and your point.  You know traditionally that's what I keep saying within organisations, and the UN funding mechanisms were not designed for small nimble organisations.  And over a period of time, I think because of different aspects, big organisations the (indiscernible) system has become very risk averse in terms of financial outflows and inflows and so on.  So a point absolutely, it's a correct point.  What we have seen lately is there have been efforts, the localisation agenda has come up quite high and it's a strong focus.  We are seeing changes and with especially organisations of persons with disabilities currently we have multiple funding arrangements in UNICEF with organisations of persons with disabilities both at global level, at the multi partner level, at the agency level, so it is changing.
Another area where this really impacts is in humanitarian action.  Because you need the swiftness of action.  Right.  So we are doing a lot of work and internal advocacy on the systems level and the standing committee level to sort of have processes in place or make those modifications, simplified standing operating procedures and so on, to enable the organisations of persons with disabilities civil society, smaller civil society organisations which may not always be able to comply with very, very strict rules and stipulations, so that to form more modalities to which partnerships could be arranged.  So absolutely well noted.  At the same time I want to say that actions are under way, and we see some improvement in that regard. 
>>:  Thank you very much Gopal.  Last couple of questions.
>>:  Hi everybody, I am Anna, I use she/her pronouns.  I was curious because we are talking about including persons with disabilities right and how important that is.  But that's very much the bare minimum, right.  This is a particular kind of knowledge and expertise people have in more access.  To what extent do you all plan to compensate when it's appropriate persons with disabilities as consultants on making your programmes more accessible and inclusive.
>>:  Good question.  Who wants to jump in there.  Do you mean in terms of the consultation that when you are consulting people with disabilities, that they're paid for it, is it.
>>:  Yes, it's expertise, right, I mean we are framing it like, you know good on us for including but really good on them for taking the time and energy and like exactly, the re‑traumatisation of explaining to non‑disableds, you know, what it's been like to exist, right, so funding is a critical part of that, so I am wondering what funding looks like and particularly to go beyond just paying for the cost of them getting to whatever this engagement is right, but also how are you compensating for the knowledge they're sharing, if it's appropriate, right, like, some of you all may not ‑‑ oh my gosh, I am so popular!  I am just kidding!  But yeah ‑‑ I am just curious what that looks like when it's appropriate, I know some places never compensate, but if you do, how do you do it?
>>:  Okay, I don't know if anyone from the panel wants to pick up on ... Gopal?
>>:  Yes, yes.  That's ‑‑ I am so happy, these are extremely relevant questions and that's a great question and I totally think that there should be ‑‑ this has to be considered.  For us at UNICEF, ten years back, where I remembered where I used to invite DPOs, now we call OPDs, organisations of persons with disabilities, and members for consultation, and there was no mechanism.  Our ‑‑ I have seen the only thing was we had to have an accessible venue and so on.  But I think it's changed now over the last five years, it's changing now in terms of transport, in terms of personal assistance a personal with disability may need, sign language interpreters, if it's a multi consultation, addition to transport, accommodation, food, that's been more and more and more considered and it's become a kind of accepted modality at least in the last couple of years that I have seen.
Now in terms of ‑‑ I totally believe that financial remuneration for the technical expertise, you know as I was ‑‑ the previous question, sometimes it is often very difficult to have those done unless you have a partnership co‑operation, agreement and so on, because of the funding modalities and mechanisms.  Increasingly we are trying to factor that in our agreements, in our programme budgets and so on.  And that is something definitely at the UN at least UNICEF we are getting more and more aware and whenever I speak to our colleagues in regional offices, country offices or within headquarters, that's something I keep flagging and we are slowly trying to be creative to see ‑‑ to ensure that that technical expertise is appropriately remunerated.  Thank you.
>>:  And that's the international perspective.  I can say from a national perspective that I don't know has it been considered to be very honest with you.  There is public consultation on policies and strategies and there is probably not remuneration for participating, but certainly organisations of persons with disabilities are the networks are funded and perhaps we need to look at how much they're funded to enable the engagement which was exactly what we want and what way we do that remuneration or that compensation as you asked is something that I think there is a review going on of how effective that particular network is, but it is funded.  Is there a last question ‑‑ sorry, yes, Rachel?
>>:  So certainly, absolutely, it's critical that people with disabilities are paid for their time like anybody else and I remember a couple of years ago when I was on a government committee transforming lives was the name of the committee, I think we were working group three and we were looking at the issue of participation of persons with disabilities in decisions affecting them.  And we were given our Terms of Reference and at the time a very strong civil society leader worked with us to get to a point where we were brave enough to say we wouldn't accept the Terms of Reference until persons with disabilities were paid, so then there was a very long stand off and then the money arrived and people were paid and it was fantastic.  And I remember there were two older women who had grown up in an infamous institution, like I mean grown up, and I remember the first time I went to visit them and they'd told me some of the treatment that they'd experienced  in that institution ... still my skin is crawling remembering those conversations, and they used to come up from that institution that I won't name, and they used to come up on the train and it took them hours and hours and the fact that they got paid, it meant so much, it meant so much.  So I absolutely hear you, for our small inclusive neighbourhoods project, that family that I referenced and I was conscious when I said it, it sounded ‑‑ I think I said we used the young woman as a consultant and I remember thinking ah, that's not the right word.  We didn't pay her, but we have done a lot of work over ten years with that family, that young woman is now in University College Dublin doing a degree, she doesn't use words to speak, she is in a power chair, she is peg fed.  She is also a wonderfully intelligent Viv Airbuses young woman, so the family wanted on her CV for her to have some kind of experience of design consultancy, so that's how that came about.  Just to give you more of a context. 
>>:  Thank you Rachel.  Okay, final question up here and I think we need to wrap it up then.
>>:  Hello everyone.  I am Raham from Kenya.  We always took about prevention, you know like of abuse, but what more is happening to equip the people in institutions experiencing this abuse to be able to report or (indiscernible) do you have any positive experience, because we have to wait until you are out of the institution to say that this happened to me, that happened to another person.  But they haven't been (indiscernible) I can actually say there isn't a mechanism (indiscernible) want to hear horrible stories from my experience in institution (indiscernible) mechanism to even report or get help, which is quite a hindrance to a person being able to live independently.  I would love to hear what is your experience in that aspect.
>>:  Thanks, thank you very much for the question, and yes that's something that I experience all the time in my work, because we are doing human rights monitoring and for us it's crucial to hear experiences of people that are in institutions.  We have done several projects in countries where we had thematic outreach.  First for people who were placed in institution.  We have to actively seek their testimonies.  So it's very hard for people who are segregated or isolated to get access to complaint mechanisms or to report abuses especially if they depend on staff to facilitate that process.  Because when they report abuse, they are often suffering consequences for speaking out.  So that's another thing that we have to keep in mind when we are receiving testimonies, what we do is anonymise testimonies, use either initials or alternative names of people, and using testimonies to inform actions that need to be taken.  Some things that we do is also to provide a legal aid to people to be able to submit complaints when ‑‑ but again that has to be ‑‑ they have to be informed about what that entails, so we have to explain to people what follows their report, so what is the process and whether that
# that's something that they are willing to get involved in.  Or just use testimonies as a tool to advocate for change.  Sorry, there was something really important and sorry I just blanked for a second. 
>>:  It's okay.  I am going to make a couple of points and if you think of it, if you want to come back in.  Sorry folks, just three points and thank you for the final question.  The first thing is I would like to say thanks a million to Eilionóir and Clíona and to Sharon, Joanna, all the team at the Centre for Disability Law and Policy for organising this.  It's a very, very impressive event.  There is an unbelievable amount of work that goes in by the whole team so it was a real pleasure being with you this morning for the two panels.  And looking forward to meeting other people over lunch hopefully and very best of luck for the rest of the week and I look forward to being back.  
A big thank you to our panel, our second panel this morning, to Dragana, to Gopal joining us from New York and in particular to Rachel joining us at short notice.  Thank you very much to our panel.  And it's show time folks because we have a group photo as we said at the end of this session, so the photo will be just outside in the foyer, in the lobby area if you want to make your way out now please without delay, the organisers have asked and then we can ‑‑ you will only get lunch if ‑‑ well sorry you don't have to do the photo but we need to do the photo first.  No food without photo for those participating, let's move it, thank you very much folks.  Cheers.
(Lunch break) 
 
>>:  Okay, we might get started.  I am Naomi Feely and I am the senior policy and research officer with the Children's Rights Alliance.  And I am delighted to be here today to chair this session.  I might just tell you a little bit about the Children's Rights Alliance, I was really struck by the number of international participants in the audience.  Like the name says, our organisation is very much concerned with the UN Convention on the rights of a child, and what we try to do is really advocate for changes at a government level that will ensure that all children's rights under the Convention will be realised in Ireland.  We have a very strong focus on policy analysis, on conducting research, on listening to what children and young people tell us themselves, and we do that really through our members.  So we are a membership organisation.  We have over 140 members right across Ireland.  And they range from very big organisations who are delivering services to children living in disadvantaged areas, such as Barnardos; as well as smaller organisations in the community as Rachel was just telling me, her organisation is actually one of our members, and we have heard the great work that they've done before the break.  And we also have a number of disability organisations who really strengthen our own analysis and provide us with such an important insight on to the ‑‑ into the issues affecting children and young people who have a disability in Ireland, two in particular that come to mind are Inclusion Ireland and I know Derval, the CEO of Inclusion Ireland, she will be chairing a session later in the week.  And also As I Am, an organisation advocating around autistic people and very much led by people from that community.
I am particularly pleased to be chairing this session, because a key thing that we like to do in the Children's Rights Alliance is not only analyse what the problem is and how it impacts children but also to propose solutions and we think it's really critical that when we go to government, engage with Ministers or with the leader of our country, that we can propose solutions as to how they may solve the challenges that are facing children today.
So for this session, it's called promising practices to support decision‑making and community inclusion.  So really highlighting best practices internationally, and in Ireland.  So we have three panellists, we have Abby Ritter from the Association of Rural Independent Living, she will join us online; Rachel Cassen from LEAP Ireland who we met before the break and Dianah Msipa from the Centre for Human Rights at the University of Pretoria.  Dianah will also join us online.  
The forums for this session is that we will have each of the three presentations, both Abby and Dianah have a prerecorded video.  We will show Abby's first and then Rachel's input and then hear from Dianah and then both Dianah and Abby will join us for the Q&A.
I will introduce Abby first.  Abby Ritter uses she/they pronouns, is a disabled music therapist and activist from Massachusetts.  They completed both bachelors and their master’s degree from Nazareth college in Rochester in New York and have a passion for working in and with the disability community.  She is the youth advisory specialist at the Association of Programmes for Rural Independent Living, and as a disability led organisation, APRIL advances the equity of people with disabilities in rural communities through advocacy, collaboration, shared experience, leadership development, education and training, and you can see Abby's full biography on page 23 of the programme.
We might play Abby's video now and then she will come online at the end of the three inputs for questions. 
>>:  Hello all, I am Abby Ritter the youth advisory specialist for the association of programmes for rural independent living, or APRIL.  Our organisation is based in Arkansas, but our staff work remotely across the continent of the US.  I want to thank you all for being here today and taking the time to learn about the Independent Living Movement in the United States.  APRIL, and our programmes.
Here in the US, independent living is a philosophy, a movement, and a programme.  The core idea behind independent living can be summarised by the phrase nothing about us without us.  It differs greatly from the medical model of disability, which states that disabilities are an abnormality in a person and that disabled people need to rely on experts or non‑disabled people for care, decision‑making and access.
The independent living model however operates on the expectation that disability is a normal part of the human experience.  The problem is not with people who have disabilities, but with society that is not built with universal design in mind.  The philosophy states that people with disabilities should have the same civil rights, options and control over choices in their lives as people without disabilities.  The independent living philosophy first recalled as a movement in the United States during the 1960s with the fight for disability rights in California.  Leaders like Ed Roberts and Judy human fought for rights for disabled people during events and founded the very first centre for independent living in 1972.  Centres for independent living were established nationally six years later in 1978, with the amendments to the federal rehabilitation act.  A Centre for Independent Living or CIL is a community controlled community based non‑residential private non‑profit agency for individuals with significant disabilities regardless of age or income.  It is designed and operated within a local community by individuals with disabilities.  At a minimum, they're required to provide information and referral, independent living skills training, peer counselling, individual and systems advocacy, and as of 2014, transition services.  For example, transition out of institutions such as nursing homes, and transition of youth out of K through 12 public education into adulthood.  Many centres for independent living also offer youth specific services.
APRIL's role within the Independent Living Movement is as a national grass‑roots consumer controlled non‑profit membership organisation, consisting of centres for independent living, their satellite and branch offices, statewide independent living councils and other organisations or individuals concerned with the independent living issues of people with disabilities living in rural America.  APRIL was founded in 1986 by 12 directors of rural centres, and attained 501C3 status in 1994.  Today APRIL has over 260 members in 46 out of 50 states and runs a variety of programs focused on furthering the aims of the Independent Living Movement.  We were the first independent living organisation in the United States to bring youth on to our board.  We took the new approach of not just having youth advise our programmes, but give them a voting seat so they can guide the organisation as a whole.  We at APRIL operate on a core independent living belief that we as disabled people are our own best experts.  Our focus on peer to peer support, rather than calling upon non‑disabled experts for answers on how to best support our community, has created a shift within the Independent Living Movement.  For example, our monthly youth co‑ordinators connect Zoom call brings together youth co‑ordinators from all over the US to collaborate, offer support, and provide mentorship and guidance to one another.  The attendees can build their own services and programmes based upon the combined experience of everyone in attendance.  This model has proved far more effective than hosting repeated webinars or trainings let by specific individuals as it allows the people doing the work every day to be the experts on the work that they do.  We have applied this model to all of our programming, including our public facing committees, peer support calls and youth focused programming.
Our public facing committees consistent of our advocacy committee, including its newly re‑established transportation and housing subcommittees.  Our emergency and disaster preparedness committee, and the youth steering committee.  These committees, except for the youth steering committee, are run by our board members and provide our membership the opportunity to give input on APRIL's work as well as to share with one another the work that they are doing within their own communities.  APRIL's youth steering committee meets monthly to plan the annual youth conference.  The Committee is made up of youth and supporters from around the US and its territories.  The group elects an executive committee to lead them each year and all members of the executive committee are young people under the age of 30.  With limited guidance from APRIL staff, the Committee decides on the youth conference theme, programming and activities.  Additionally, they fundraise for the event, create advertisements and social media posts to share with our membership and other interested parties, and offer conference scholarships to help bring as many youth to the event as possible.
Once youth have attended the conference, many are ready for the next step in their development as leaders.  Last year, APRIL developed and ran the pilot year of the APRIL lead on collaborative meant to meet the need for a step two programme.  Up to 20 youth and young adults with disabilities meet weekly via Zoom for six weeks to learn from individuals from the disability community and one another on areas that they identified as important to their growth during the application process.  Some of these areas include but are not limited to understanding personal values, wage negotiation, making community change, and understanding communication styles.  At the end of the six weeks, all participants attend and present at the annual APRIL conference.  We are looking forward to having them attend our conference this year in California which takes place from October 12 to 14th.  More information is available on APRIL's website which is www.APRIL‑rural.org.  Outside of our community is an Annual Conference, APRIL provides a variety of peer support programmes.  Our individual peer to peer mentorship is funded by the federal training and technical funding here in the US and creates mentor/mentee pairs between individuals who hold the same position within their CIL or CILC.  We will pair an Executive Director of a CIL to another Executive Director of a CIL.  Outside of our individual peer to peer mentorship programme, we offer monthly group peer support calls.  APRIL's youth peer support call is our newest programme.  It operates within the same model as our other peer support groups by allowing those in attendance to choose the topics they want to discuss with limited guidance from APRIL staff.  This group is small but has maintained a consistent membership.  We have seen great rapport develop between the individuals who attend and we look forward to seeing how this programme grows going forward.  Overall, APRIL is proud to be an organisation that promotes community inclusion for disabled youth in everything we do.  We know that the Independent Living Movement will only grow if we support youth and we aim to act as a hub for young people to come together and lift each other up throughout their growth process.  Thank you for your time and I look forward to speaking with you all during the question and answer period.
>>:  Great.  We will show our appreciation for Abby there, I think that was a really excellent presentation and I am looking forward to exploring it a bit more in the questions section.
I am going to reintroduce Rachel to everyone again.  Rachel Cassen is from LEAP Ireland and Rachel is the director of LEAP which is a social enterprise which empowers families to take action for an inclusive life.  Through her work in LEAP, she provides a range of opportunities to assist families to develop a vision of a good life for their family member and to focus on relationships belonging and socially valued roles.  So you can read Rachel's full biography on page 10 and I might let you take over now. 
>>:  Yeah, so back earlier I was talking about water street association, which is a spin‑off initiative of LEAP.  But LEAP is our main organisation, but actually I think if I was a betting woman, in five years’ time water street association may have outgrown its parent as children often do!
I was asked to talk about our work in supporting families and younger children with disabilities to participate in their communities and in decision‑making.  And really running through all of the work that we do is an intention, because we are very much about intentionality, that children will grow up with an experience of being listened to, and their wishes taken seriously and acted upon.  So we work through the family to support the child and how did I get into this work?  So I have two sons and my eldest son is 29 and he was five days old when I moved to this country from London.  Yes, I have been here nearly 30 years, and yes I still sound very English!  The taxi driver who brought me here this morning was like, where are you from love?  And I am like Mullingar!  But anyway my accent hasn't gone.
So my own experience and my son's experience was, I suppose what ‑ the reason why I set up LEAP with another woman.  I don't tell my sad story any more.  I am not going to go on and on about what it was like back in the day.  But it was awful.  So much so we wanted to try and set up something that was really practical and supportive of families.  When we say families, we don't mean parents.  I want to say that very, very clearly.  That supports families, very much like the previous speaker, it's a peer to peer network primarily.  We gave up working with services years ago.  The service reform is dead.  It's not happening.  Services suck up all the money, we believe the money would be far better spent being given to disabled people and their families.  And the work that we did in services just didn't change anything.  So now we just work with families.  But when I say families, I do mean all the members of the family.  So I am not saying we work with parents, so I want to be very clear about that.
So we work in three areas.  If you like three buckets.  So that's a nice visual for you.  The first bucket is called inspire.  The second bucket is called imagine.  And the third bucket is called include.  So we assist families to develop a vision of an inclusive life for their child or young person with a disability, but within that, actually everybody tends to start talking about what it is that would make a good life for them.  So you can't really just go into a family and often we meet grandparents, aunts and uncles, all sorts of people and we work very much ‑‑ most of our work is around the kitchen table.  Certainly in the include bucket, we are around the kitchen table a whole lot, or very local, very, very local.  So what's in those three buckets and what are they?
So inspire, we talk about sharing really useful knowledge to encourage families to dream big and believe in possibilities, because so often when families receive a diagnosis for a child, they're told things like that child won't be able to go to school; that child will never talk; that child will never walk; you know yourselves.  And that low expectation is really, really problematic and that lack of support and emotional support actually around families.  So nothing that we do is clinical or therapeutic.  It's really working around the idea of mindset change, developing a rich compelling vision of a meaningful life, and then practically assisting families in three areas.  So those three areas are belonging, so places to belong; relationships and valued social roles.  And I know I get pushed back on the valued social roles piece, and I think one time a few years ago, we were to work with a group here in Galway whose name again I won't mention, and we were told that as LEAP, we were promoting a hetero normative lifestyle.  Well I really don't believe that we are.  But this idea of valued social roles can get up people's noses, so look if it gets up your nose, talk to me afterwards, but it's certainly something that we are very, very focused on.
So the inspire is about sharing really useful knowledge to encourage families to dream big and believe in possibilities.  The imagine piece is assisting families to find and connect their allies, convene their network, and create a vision and a plan.  I will explain what this means shortly.  And include is as I just mentioned, building their family members' roles, relationships and belonging.  Very practical for families who want to pursue an inclusive life for their son or daughter, brother or sister or for themselves.
So families do come to us, not often, not often, and are talking very much the language of special needs and segregation, and we have simply learnt to say to them look we are not funded to support that.  If you want to go that route, we can't work with you.  And that's quite a difficult conversation to have.  But that's not what we do.
So promising practices, society tends to take a very instrumental view of families.  And I am just going to put that out there, and get you to think a little bit about your view of families, and it's a very subjective thing, family, isn't it, because we have all had one and most of us are still in recovery from our own!  So in LEAP we try and come alongside families and assist them to think about what is important, what is worth focusing on, and what has a lasting impact down through the years?  So a central question for us has always been what happens to families when hard times unfold?  And from this, a second question emerges, what enables good lives for disabled children and their families?  And then thirdly, over time, across the life course, what really makes a positive impact on the lives of children with disabilities and their families.
So I have got a list of things here that we have learnt through our practice and I am a bit uncomfortable with notions of best practice and good practice and I don't know, I don't know, I don't know.
We know from the research that high parental expectations are a game changer, particularly in terms of employment outcomes for disabled children and young people and the research in the States shows that 13 years of age is the optimal age at which young people should start ‑‑ young people with disabilities should start doing paid work experience.  13.  And if you are starting to work aged 13 and earn money, that for each year you work, you are more likely as a child, you are more likely to stay in employment throughout the decades of your life.  So that's quite incredible.
High parental expectations are not currently in operation in this country.  In fact in the last ten years, Ireland has fallen nearly to the bottom of the league in Europe for numbers of disabled adults in open employment.  So we are doing really badly and I often think about what's the problem, because it's not for lack of money and policy and initiatives.  Policy doesn't necessarily work on its own.  And I really think the missing piece is parental expectations.  Parental expectations are often incredibly low, incredibly low, but families are encouraged to reach for that quantum of support, that therapy or whatever, which quite often we find runs out around age 12, so they're chasing therapy, they're on waiting list, they're doing advocacy and so on.  I love to see people knitting and sewing when I am talking, that's really strangely comforting.  They miss the bigger issues which is after you have secured an appropriate place for your child in a school or after you have got that speech and language therapy, what is your child going to do for the rest of their lives?  Have you thought about that?  Because please God most of us spend most of our lives as adults.  So this is where we come to the piece around vision.  So we sit down with the family and there is a lot of conversations before we arrive, and we get lots of flip chart paper and we begin to sketch out this vision.  And over three or four hours, pulling it out of the mouths of the family.  Pull it out of the mouths of the family.  And it's hard.  It's hard.  Because to say that you want your son or daughter that you have been told can't go to school or walk or talk or whatever, to say you want them to have a rich meaningful compelling life, that's a big step for families.  We were last week down in Cork with a family and they've two sons.  And so we are back next week to work with the second son.  But it's ‑‑ I can't explain it in any other way that you can see what I am doing, so you can pulling this.  So we asked them to give us a statement, and the statement is the vision.  I am just going to read the one that finally came out last week.  I will just pull it up on my phone.  Sorry, just talk amongst yourselves!  Here we go.  Okay.  We are going to call him Fred, all right, that's not his real name.  That Fred would have his own social enterprise, that Fred would have a fulfilling life and be connected to the people, places and things that matter to him.  It's very simple.  You could say well that's not very much really.  So the vision is very important because it becomes like the family's north star.  If you imagine the family, a family who have been told really this child isn't cutting it, this child isn't going to make it on the regular school, in the regular club or group.  And somebody else is coming in and saying well actually they can, do you know what?  And what we do at that point is share lots and lots of stories of other families that we are working with.  So you have got to both see it to believe it.  But also believe it to see it.  So the vision piece is very, very important.  And we create about ten posters and leave them on the wall.  We stick them up usually in the kitchen with blue tack, sorry, are you okay, are you asking me a question there?  No, that's fine.  So one family ‑‑ another family in Dublin, we went back to them, we were there with them this Thursday night.  Six months later we went back to them and they happen to be ‑‑ we meet all sorts of families, they happen to be an incredibly wealthy family in this case.  The family in Cork last week couldn't have been more different.  A family a few weeks before in Kilkenny didn't even have a teapot.  They were making tea in a saucepan.  So we really meet a real range of families.  But the family in Dublin still had all the posters on the wall, these pieces of flip chart paper, six months later, very, very wealthy family.  The Dad is always on and off a plane.  But incredibly committed to their daughter and are currently working with us around getting this young woman into college.  But the nature of her disability means that she needs a very, very specific funded piece of support.  So that's another that we do, we work with the family to develop this vision, to develop a plan, to work on what it is that they want funding for, and then we go with them to the HSE and we actually ‑‑ the Health Service Executive, the funding agent, and we nut it out with them.  And we are pretty successful in terms of securing funding for families.  They like the fact that the families have worked with us and they've developed this vision and this plan.
So high parental expectations are a game changer.
A network of friends, family and allies and places of belonging.  An inclusive education.  Children who have had an inclusive education as we know are 80 per cent more likely to be in open employment.  Also research from North America.  80 per cent more likely and that is not an autism unit or any kind of segregated or special education.  Individualised funding or personal budgets, including budgets for children that give families the competence and confidence to use a small piece of money towards their child's full inclusion in community life, in school life.  In the UK, you can actually get personal budgets for health as well.  So for assistive technology, can you imagine what a game changer that you can actually buy your family member's own assistive technology with individualised funding or a personal budget.  We have a few families, we think three or 400 in this country, who have a personal budget.  We have a pilot scheme for individualised funding.  It's an absolute game changer, but here's the thing: the money doesn't change anything.  Again the research in all the countries around the world that have had individualised funding, in some cases for up to 30 years, like parts of Canada and the United States more recently, they've had individualised funding for every eligible person in Australia, but without a vision of a rich meaningful life, the money doesn't change anything.  The people are shown to just buy back traditional day wasting or life wasting services.  So we know this.  So again that's why we keep banging on about vision.
Another enabler of a good life, opportunities to develop and build relationships with others, and to learn how to create positive change.  So just like the lady from APRIL was talking about we do a fair bit of leadership development and quite often if you are a family connected to LEAP, you end up presenting at our events, working with another newer member of the network to help them, share some support, some learning that you have gleaned in your journey with a newer family whose child might have been recently diagnosed.  And a lot of our families cycle through our board of directors.  They become board members.  So we do informal leadership development through giving people roles in a variety of ways.
Developing strategies for community engagement and inclusion through which relationships can emerge, so again very intentional practice.  Finding and being able to direct their own good support workers that can lead to desired outcomes in the vision or the plan.  And access to an organisation that provides opportunities to develop knowledge and skills and provides connection to other like-minded individuals.  So it's actually really timely during the lunch break, I got a lovely message from a friend in the States, and she was one of the ‑‑ it was me and her founded LEAP in 2011.  She is now living in the States.  And she sent me a picture of a young man and I have got it here on my phone, and he is working in her parents' hardware store in county Meath and when he came on our first ever family leadership retreat, he is 18 now, so that was 2011, do the maths for me, what was that, how old was he?  Six or seven, thank you.  And he is now working in the hardware store.  And one of the things that we do with our family leadership weekends, I haven't actually gone through the work and I know I am running out of time, how long have I got please?  Five minutes, thank you.
One of the core offerings that we offer to families every year is a family leadership weekend.  So we invite the whole family to come, so parents, we get a lot of single parents coming but if there are two parents, grandparents are welcome, sometimes a best friend or a sister comes, an assistance dog often comes and all the children in the family.  And so often families say to us, this is the first time we have ever gone away on holiday together.  Usually we put a child with a disability, whichever the child is in the family, if they have more than one child, into a respite setting, and then we bring the other children away and we feel so miserable and sad that we have to do that, but we are not able to support the needs of a child in a regular hotel or a holiday camp or whatever.  So in 12 years, we have never had to turn a child away and we have had a young man die very soon after he was with us, and we had a father die very soon after he was with us.  We have sometimes had that experience but we have never yet not been able to work out the support needs and we provide informal support in the shape of a family pal.  So back to this lovely young land working in a hardware store in Meath today and is absolutely thrilled with himself, and you can't obviously see it but he is wearing a bit like the colour of the summer school T‑shirt, he is wearing the hardware polo shirt and it's got the logo on, so everything about him says that he is working in this store and he happens to have an intellectual disability and he looks really, really smart.  But so his mother still comes to our workshops.  We run regular workshops and events.  And his family pal from all those years ago on the family leadership weekend, and note that we talk about family leadership, not family support, so that's very, very different concept, and that's not parent leadership by the way, it's family leadership.  So I just got that at lunchtime, and it's absolutely wonderful, because he is now a man and he is working.
So into those three buckets then, inspire is the family leadership weekend, workshops and our family leadership series; and within the family leadership series, we ran this during COVID and there is nine webinars, the first you are not going to be surprised is developing a vision of an ordinary life for your family member, an introduction to inclusive education, supported decision‑making for children and young people, safeguarding the future, family advocacy, planning for life after school, creating community in the street where you live, getting a life, not a service, how to utilise individualised funding.  So the second bucket then, imagine, is visioning and planning, our brochure series, which is more or less the same headings as the family leadership series.  And they include bucket establishing networks, so this is where the rubber hits the road.  We would actually convene the network in the family home and we would simply ask people the question, who here loves your child?  Bring them together, bring them together around the kitchen table.  Now some families have 20 people at the first meeting and it's a bit overwhelming.  Other families there is three of them and that's the family who really got isolated.
Community connecting is the second piece we do in the community.  So very much leveraging the family's assets, their gifts, their talents.  So who do you know who works?  What kind of work do they do?  What opportunities are there to get involved?  And really giving that support and encouragement and confidence for families to ask.  One of the things families tell us they find so hard is to ask for support, right.
And then advocacy, so we do big A advocacy and small A advocacy.  So if the child is having a really, really hard time in school, then we go into school.  But we don't do table thumping adversarial advocacy, we do relationship based advocacy.  And then big A advocacy, so I mentioned earlier this morning during COVID we did a lot of big A advocacy, and we do submissions.  I have run out of time, so I will just simply close by saying we are really talking about ‑‑ you can call itself direction, you can call it family leadership, and what I would say to you is that self-direction simply describes a situation where decisions and choices that determine the person's life are made by their friends, their allies, their supporters, and whatever services and professionals do, they must not seek to alienate or separate people from their family and friends, because it is they who constitute the most enduring sources of support, however flawed at times in people's lives.   
>>:  Thanks a million Rachel, and we will give her another signed applause there, I thought that was really great and we can really see from these inputs there are really key themes emerging which I will come back to in a moment wonders we have heard from Dianah, Dianah Msipa from the Centre for Human Rights in the University of Pretoria.  I will read an extract from her biography.  She is a disability and human rights legal scholar and advocate.  She manages a disability rights unit at the University of Pretoria.  She holds a masters of law degree from Magill University in Canada and she recently completed a doctor of law degree at the Centre for Human Rights in the University of Pretoria.  Her research interests include sexual and reproductive health and rights and access to justice, legal capacity, disability rights protection in the African human rights system, children's rights and the rights of persons with albinism.  We may Dianah's video now.
>>:  A very good afternoon to you all.  My name is Dianah Msipa.  I manage the disability rights unit at the Centre for Human Rights in ‑‑ at the University of Pretoria in South Africa.  I apologise that I could not be there in person, but I do hope that we will be able to interact albeit virtually.
Just for the next few minutes I will be speaking to you about promising practices to support decision‑making, and community inclusion for children with disabilities.  So that's the name of the panel generally and then specifically I am going to be speaking about (indiscernible) to action.
Just by way of background before we get started, I would like to give a little brief background to set things in context.  So first of all, it's important to note that within the African region, there is an existence of an enabling legal framework for community inclusion for children with disabilities.  I will demonstrate at this point as we start.
So first at the global level, there is instruments such as the Convention on the Rights of Persons with Disabilities, or the CRPD in short, which you will all be very much familiar with and there is also the Convention on the Rights of the child.  At the regional level, we have The African Charter on Human and People's Rights and we have The African Charter on the rights and welfare of the child, the African youth charter and then the newest instrument, which is disability specific in the African context, is known as the Protocol to the African Charter on Human and People's Rights on the Rights of Persons with Disabilities in Africa.  
So most African countries have actually ratified and acceded to these instruments.  I think probably the only exception would be the African Disability Protocol, because that is more of a newer instrument that was adopted by the African Union in 2018.
To date it has received about nine ratifications, so what that means is that it is not yet in force.  It requires 15 ratifications in order for it to come into force.  Nevertheless it remains an important part of the international human rights architecture within the African region, and no doubt within the next few years, when it has received the necessary amount of ratifications, it will come into force and will be one of our most important instruments for the rights of persons with disabilities including children.
So all of these instruments that have alluded to, all have provisions that are meant to ensure that children with disabilities live and participate effectively in their communities.  So I think it is fair to say in light of the existence of all of these instruments that there is an adequate legislative framework within the African region for community inclusion of children with disabilities.
However, the problem is that these instruments have not translated into the desired social change.  So they have failed to bring about the desired level of inclusion in the community for children with disabilities, and this is well documented in literature on this issue.  There is quite a number of barriers that are documented in the literature to community inclusion for children with disabilities in the African region.  So these range from insufficient financial resources, lack of appropriate community activities, inaccessible transportation, safety and security concerns, negative attitudes, et cetera, et cetera.
While each of these barriers is significant, and there is a need to address each of the barriers adequately, but what I would like to do in these next few minutes is to focus my attention on one particular barrier they think has a significant negative impact on the realisation of the right to community inclusion for children with disabilities, and this barrier is negative cultural beliefs and practices.
So within the African region, there is numerous negative cultural beliefs about disability, that result in exclusionary practices.  So for example, there is the belief that disability is the result of a curse, or a punishment for the sins of the family.  And this belief has fuelled the common exclusionary practice of hiding children with disabilities and preventing them from participating with others in the community.  But it is my belief that legislation alone cannot adequately address this issue.  The negative cultural and social beliefs need to be challenged and overcome.
What is crucial to note at this stage is that there are scholars that believe in the African region that there is positive cultural beliefs that exist alongside the negative ones.  One such scholar is an African philosopher, Oche Onazi.  For him, the failure to make use of the positive ethical and moral African standards is also responsible for the social exclusion of persons with disabilities, including children.
So the focus of my presentation therefore is on the use of one of these positive ethical and moral standards, namely the philosophy of Ubuntu, and how it can be used in parts of Africa to improve community inclusion for children with disabilities.
As this panel is one on positive ‑‑ promising practices rather, the promising practice that I will focus on or share with you is one that is known as Obuntu Bulamu, implemented  in Uganda and based on the philosophy of Ubuntu.  I am going to explain that one to you in great detail and it is an example of a positive practice or a promising practice that makes use of positive African cultural beliefs in order to improve or enhance community inclusion for children with disabilities.
So I will divide my presentation in two parts, the first part addresses the meaning of Obuntu, and the second and final part addresses at the Obuntu Lamu programme that's based on the concept of Obuntu and was implemented in the African country of Uganda.
Starting with the first part, which is about defining the concept or explaining the concept of Obuntu.  When we speak about Obuntu, Obuntu is an African philosophy of what we call shared collective humanness.  As well as responsibility.  So the concept is one that originated I think in southern Africa, but forms part ‑‑ a part of many African belief systems beyond the southern African region.  The late president of the Republic of South Africa, and anti-apartheid activist Nelson Mandela famously subscribed to the concept of Obuntu.  It is neatly encapsulated in the Zulu expression ... what this means in direct literal translation is that a person is a person through other persons, or a human being is a human being through other human beings.  That sounds complicated but really essentially all it means is that the relationship between a person and their community is interdependent and mutually beneficial.
So in other words to put it simply, all humanity is connected.  One cannot exist in isolation from or independent of other human beings, and it is through the influence of and interaction with others that one becomes who they are.
So important to note as well is the fact that the idea of humanity as a collective that is central to Obuntu does not erase individual difference and assume that everyone in the collective or in the community is the same.  On the contrary, it recognises and values the diversity of humanity.  Therefore, according to Obuntu, disability is simply part of common human diversity.  So Obuntu has always influenced how Africans view and understand the world.  From time immemorial, but in recent years it has been applied to disability in a more purposeful and conscious way.  So for instance, I think one very clear example of an application of the concept of Obuntu can be found in the instrument they referred to earlier, the African disability specific instrument known in as short as the African Disability Protocol.
So the African Disability Protocol is based on the CRPD, and was enacted after the CRPD came into force.  But it also contextualises the right.  So it doesn't just replicate the rights that are contained in the CRPD, but it also contextualises them and puts them in an African context.
So one of the rights that are contained within the African Disability Protocol as well as the Convention on the Rights of Persons with Disabilities is the right to live independently, which we will all know is ‑‑ forms part of Article 19 of the CRPD.  However, in the African Disability Protocol, it is couched differently.  It is couched as the right to live in the community.  And this is covered in Article 14 of the African Disability Protocol.  So that terminology, calling the right to independent living the right to live in the community, is an acknowledgement of the centrality of the concept of Obuntu to African thinking, that there is no concept of independence in African society, but rather there is more of a concept of community, that idea of community is central to African society.
So everyone ‑‑ so one other thing to point out is that Obuntu places responsibility on the community as a whole.  So everyone in the community is responsible for one another.  One author puts it this way and I think they put it quite effectively:
"If I am because we are, then ensuring your well-being, your dignity and your rights will also ensure mine."  So therefore any threat to the rights of a child with a disability, for example, the right to community inclusion, is a threat to the entire community.  And the responsibility for addressing this falls on the community as a whole.  Rather than on specific individuals.  Or specific entities.
So that is the central ideas behind the concept of Ubuntu.
Now I think what we have done thus far is we have looked at a very theoretical explanation, we focused on the theoretical explanation of the concept of Ubuntu and I think now we need to move into the practical.  Ubuntu in action.  What does Ubuntu mean in practice, and now I will spend the next few minutes speaking about the Obuntu Bulamu programme in Uganda.  The programme is influenced by the concept of Ubuntu.  It is a pilot programme that was implemented in central Uganda, and it is an indigenous peer to peer support intervention, whose purpose is to improve the participation and the inclusion of children with disabilities.  Who is it for?  It is for members of the community including children with disabilities, parents of children with disabilities, teachers, et cetera.  So the concept of Ubuntu I think is depicted or exemplified in a number of aspects of the Obuntu Bulamu programme.  So first of all, it is depicted in the name Obuntu Bulamu.  So in Uganda, which is one of the languages spoken in Uganda, Obuntu Bulamu means an accepted and consistent behaviour that signifies a shared set of values, which promote well-being togetherness and unity and that was a quote by the way.
And the study was conducted between 2018 and 2019.  And the concept of Ubuntu is also depicted in the methodology that was adopted in the programme.  So the programme activities included two specific activities, disability inclusive peer to peer training, and support activities and various members of the community were involved in the intervention.  So again you see that aspect of community involvement, the responsibility being upon the entire community, being played out in the Obuntu Bulamu programme.
So the interventions specifically was made up of three training sessions for parents.  The training focused on togetherness and belonging, and the training was conducted by Ugandan disability inclusion experts, and was conducted for a year.  Every school term for a period of one year.  And then there was also a quarterly support activities that were delivered by what were called focal parents and this was delivered over a period of two years.  So the focal parents were literally parents from the community who had received training on disability inclusive issues particularly inclusive education in a prior study and during the course of that study, they had expressed an interest in participating in future studies.  So they then became the focal parents in this next study.  The roles of the focal or peer parent were numerous, they included listening and providing emotional support to other parents, sharing information with other parents, assisting parents to raise awareness and address issues, related to disability inclusion, for example poverty and marital issues.
So the focal parents visited the other parents at least once a term, once in a school term over a period of two years.  And important to note as well, children with disabilities were intimately and closely involved in this programme, because they were consulted and they were involved in the selection of their peers from their classroom.  So they selected the peers that would be involved in the study, so these were people that they were comfortable with, people that they were familiar with that formed part of their immediate community.  And in line with the concept of Ubuntu, the programme placed emphasis on belonging as well as on family and community responsibilities.  It promoted social responsibility, the use of culturally appropriate methods and locally available curricula and materials to achieve change.  So what is important to note are the results of this study, or this programme, and these are quite interesting.  So the first thing that we should note is that the programme increased child participation at home, in school and in the community.  One of the other results is that parents found the intervention inspiring, acceptable, culturally appropriate, and supportive, because it was based on values and practices from their own cultural tradition.
Parents also stated that the intervention enhanced a sense of belonging and a sense of feeling supported, which is all part of the idea of Ubuntu, the idea of living together as a community.  And it helped them to develop more positive attitudes towards children with disabilities, and towards the idea of disability inclusion itself.
So in conclusion, the Obuntu Bulamu peer to peer support intervention was found to have been an acceptable and culturally appropriate intervention, one that needs rolling out.  And it was found that it has potential to improve inclusion of children with disabilities in the community.  Because after these interventions from other members of the community, the community was more open to including children with disabilities, the community was more aware of steps that can be taken to ensure that children with disabilities are effectively included in their communities.
And overall, on a broader picture, the Obuntu Bulamu programme demonstrated the need for more Afro centric interventions, ones that are built on African cultural values and practices.  It also showed that interventions based on indigenous values have greater potential to be acceptable amongst the community and can foster integration, and are likely to be sustainable in achieving disability inclusion, compared to values that are imported from elsewhere.  So just to conclude, I think the use of positive cultural philosophies has potential to challenge the negative cultural perceptions and beliefs, and promote the inclusion of children with disabilities in the community.  And I think this is the contribution that the concept of Ubuntu can actually make to the inclusion of children with disabilities in their communities.  And together with existing legislation, the positive values of Ubuntu have the potential to address the barriers to community inclusion for children with disabilities in Africa in a much more sustainable and culturally acceptable way.  And so yes, I think this marks the end of my presentation, I thank you, and I wish you fruitful deliberations going forward. 
>>:  That's great, another well-deserved signed applause.
Before we get into the questions, we might just bring on screen Abby and Dianah.  And we might just do the applause again so that they can see it.  Hopefully they've seen it. I thought they were three really, really excellent presentations from Abby, Rachel and Dianah.  There was just a couple of tiny things I am going to mention.  I think the audience no doubt will have lots of comments and questions.  What I was really struck by, in our own work we are often very focused in the Children's Rights Alliance in understanding the systems or the services that are available for children with disabilities and what really struck me was the strong focus on people rather than services or systems, which I think often times policy makers can get tied up in thinking about things in terms of services, how many people are waiting on a service.  But all three presentations really brought to the fore the importance of people, not just people in and of themselves who may have a disability, but the importance of all the people around those individuals, and how they can all come together to really as Rachel put it, achieve a vision for the life of that ‑‑ of a family, of a child, of a young person.
I suppose all three are really grounded in human rights.  They really provide such an important human rights perspective.  I thought it was almost like there is more of a growth mindset with all three approaches in looking at what can be achieved, and not a narrow focus on what is merely available.
The other thing they really liked was that there was a really strong focus on values and shared set of values, and particularly I liked Dianah's presentation on really sharing with us the insights from her own culture in Africa.
I think that all three presentations have just sat so well together and I am really interested to hear more as well from Abby around the Centre for Independent Living, and how maybe children and younger people's voices are heard within that.
I am going to hold my own questions for the moment and I am going to take some from the auditorium first.  There are a couple of questions online, but what I might do is take maybe two or three questions together and then we will have a response from the panellists.  If you just let us know your name.
>>:  Good afternoon.  My name is (indiscernible) and I am from Swaziland.  Thank you so much to all of the panel for the presentations.  But I will be touching in the different presentations.  So what I would really appreciate is the fact that you have brought us all here for such an event.  But then when we go back, how is it going to be of assistance, because in as much as the laws are being passed, but they're not implemented, or as Dianah mentioned, it is at the point of implementing the change in as much as the law is there, it's not really happening.  We have laws passed, conventions being attended, but it's not coming to life.  And especially in our country, we experience a lot of corruption.  There can be funding which is given to government but it doesn't get to the people.  So as Rachel mentioned that she has decided to work with families.  I would want to know how can we be assisted, especially in third world countries where we don't get to access this funding and help because it ends at the officials' level and it never gets to the people.  So having a disabled child has become really a burden where you feel like it is a curse, how can I deal with this?  It's a very emotional situation.  So it's good for you to bring us here, but it also ‑‑ I would also appreciate the effort of taking it back and it is implemented directly with the organisations that are working with young children with disability.  And also having such exercises, conferences in our countries where we are invited, not just at the government level, but the community level, and also the (indiscernible) they don't really get to community.  In Swaziland we don't experience any grants.  They're only given to other people and it's ... I can't even mention the amounts, but it's just some years ago.  When it comes to children or anything, there is nothing, there is no help.  You have to take care of the child and most of them, they are not afforded the chance to even attend school.  They become just children staying at home with no one to take care of them.  Others are even ‑‑ some of the families in Swaziland are children headed families, or single parents.  I am also a single parent for a child with autism.  How can we be assisted?  I was even saying to my boss the other day, we so much attend training, but when it comes to implementing what we have learned it becomes a problem.  So we need to be as we are being trained, it would be even better for you to train someone on the floor than attending, sitting, getting papers and it still goes back to normal.  Thank you.
>>:  Thank you.  I will just take a second question and then Rachel is going to respond to that one.
>>:  Thank you.  Thank you Mrs Moderator.  The promising practices who supported the decision makers maybe we have to get a supporting budget with the policies to be implemented to see that the Sustainable Development Goals are not left on papers.  We have to implement them locally and it has to be like it is a must, not to say that we have ‑‑ they have set the SDGs, the Sustainable Development Goals, they are set, they are left on papers, they are not implemented.
Secondly, the decision makers has to be with the budget, which helps them to practice the policies which are set.
Thirdly, we have to create awareness through communities, opinion leaders should be involved and cultural leaders, opinion leaders, policy makers, they should be involved.  We should create awareness to those people.  Or ask them or involve them in whatever we are doing so that they are not left out.  Because if you are having ... like when we are having workshops like the conference which we are having today, the policy makers are not in.  So if they are in, so that we don't talk to us, we are the parents and the PWDs.  If we don't talk to them, if they are not involved, nothing will go on, thank you.
>>:  Thank you, and I think they're two quite related questions, so I am going to let Rachel come in first, because she had indicated that she wanted to respond to the first question which was looking at how can we take these examples back to our own countries?  And the second one was really, I felt like your question was really related because it's about implementing it, how can we get our budgets to implement the programmes that we have seen here?  Is that correct?  And how do we influence them as well?
>>:  So I would like to address the first question if I may.  I don't understand the context that you speak about.  And how could I?  I don't live in your country, I don't walk a‑mile in your shoes, but I may offer a few comments and thoughts that your comments, your question produced in me.
So the first thing is do you remember I said one of the questions we always return to is what happens to families when hard times unfold?  And I firmly believe that the services such as they are often benefit the paid staff more than the people who need them.  So we saw that during COVID.  We saw that very, very clearly.  The services continued to pay the staff to run the buildings, but families were just abandoned, just abandoned.  So I really think that the lowest level of organisation, closest to the person, and that includes you as your son or daughter's mother, is most effective.  So we tend to think in two ways, we think about the worst thing that could happen, but then we wrap around that a lot of love and a lot of belief in the abundance that is really in communities.  So I am not talking about that in a woolly way.  I am really talking about that in a very, very practical way.  So starting where you are, using what you have, doing what you can, believing actually that yes if money came you would use it wisely and well, but that money may never come, it may never come.  And what can you do when you don't get the funding?  What can you do when you don't get the place in the school?  What can you ‑‑ believe it or not, there is thousands of children, a growing number in Ireland who can't get a school splays, or who are on one hour a day school because they're "behaviour" is considered so challenging.  So we have growing problems in that regard here.  A lot of children who don't make it to school.
What can you do?  You can't do it on your own, you can do it with a network of people.  So convening your network, it's not a soft thing, it's not a nice thing to have, it's a need to have.  You may remember earlier I was saying I came here with a five day old baby.  I had no family here.  I had a child who was labelled with autism and all sorts of awful labels, heavily medicated.  I told you I wasn't going to tell my sad story, I am talking to you.  Okay, it was awful.  What I needed more than anything was not some Social Worker coming at me with her head at 90 degrees, some nun, recycled nun.  I didn't need that.  What I needed was a tribe.  What I needed was people around me.  So within LEAP that's what we created for ourselves and for others.  So have you got an organisation of families?  Have you got an organisation that can maybe do things together including maybe teach your children two or three or four together in your own home or whatever community space you have?  Start with something really, really small and then begin to build out from that.  But just find one, two, three other parents who have a similar vision as you, and stay really close with them.  And then grow it. 
>>:  That was a really great answer.  Abby or Dianah do you want to come in on either of those questions.  Abby, I think I see you nodding first?
>>:  Sure, so in the United States, the Independent Living Movement that APRIL is a part of has been an effort by and for people with disabilities.  I mentioned this briefly in my presentation, but we grew out of the fight for disability rights beginning in the 1960s in California.  The father of independent living, Ed Roberts, he was told by the federal government that he would never amount to anything.  He was told by universities that he could never attend because he was too disabled.  And he rejected that and he fought back and eventually he ended up getting a job working within the department that told him he could never amount to anything.  And he and other disability leaders came in and they just didn't take no for an answer, and I am not here to say that we should all pick ourselves up by our bootstraps and keep fighting, but I will say that a lot of a movement, and a lot of our movement in independent living came from people who didn't say no to things.  And so much of it ‑‑ and so much of what APRIL does is based on peer support.  So rather than going the federal government or State government asking for funding, for a long time there wasn't funding.  And so we did what we could to support each other as individuals, and as a community.  Eventually of course funding came but we are mostly as an organisation funded by our membership, and by other ‑‑ we are funded by other grants, but those are private, they are not federally funded.  And I don't know, I think the core of what we do though ‑‑ of course we need the money for accommodations, for paying for Zoom, for those sorts of things, but the core of what happens at APRIL is the conversation and the community between the people who come together.  And try to fight for the rights of disabled people.  So I think really relying on your community and building community, there is strength in numbers and there is strength in that support.  I hope that's helpful.
>>:  That's really excellent.  And Dianah do you want to come in on that?
>>:  Yeah, very quickly, I just want to say you are absolutely right, within the African context, social grants are so rare, if there is any, maybe they're so little that they don't really provide enough.  They don't cover all the needs that a family would have.  But again I think just to echo my two colleagues' sentiments, is that get involved within a certain community.  I think a lot of times people would be surprised just how much resources can come out when people pull together as a community.  Even if there is no government funding to add to that.  But also just to make use of the networks and the communities around.  So yeah, look around you, try and do some research and find out who else ‑‑ are there any associations that have been formed for persons with disabilities, and be part of that?  There is also resource that is you can tap into, but when you are in the right networks.  Yeah, I think that's it, thank you.
>>:  That's great, thanks a million.  So who is next?  This lady here, and then we have this lady over here.  And then up the back I think if that's okay.
>>:  Yes, good afternoon, thank you so much for the wonderful presentation, I really learned a lot and I am interested in replicating what you were doing with your communities in our local village.  I just want to ask if you have a website, or a training guide or a manual that is posted online or are your seminars, webinars available online so that we can try to watch them and learn more about it, or can we contact you after this so we can ask for more direction and how we can do this at our grass‑roots level, because I think your work is really wonderful, thank you so much.  I also have a son with autism.
>>:  Thank you, and we have a lady over here.
>>:  I beg to differ.  Because in Africa, it's very different.  I was looking for ‑‑ earlier on when I was speaking, we are looking for a way of dealing with our situations independently but what I have noticed is the African protocol on people living with disability, for me I feel like it's not going to work in a sense that a lot of politicians in Africa do things for political mileage.  If they're not going to get political mileage from it, they're not going to bother.  Like this has been there since 2018 and none of the big countries in Africa have actually ratified or paid attention to this.  So this convention scares me in effect that the monitoring of it is going to be very minimal.  That means a lot of children are going to suffer because if you say ‑‑ if we say to you we have something personalised to Africa, that means it gives it to the AU in Addis Ababa.  We are looking for a personalised strategy for our problems through an international platform where we can look at other countries, not only Africa.  And Dianah, I agree that (indiscernible) but it also has a negative mart of it because you cannot capacitate parents without capacitating the community.  I am speaking from experience.  I started an organisation when I was 20 years, after having my daughter.  I have an organisation with over 6,000 parents to children living with disability.  Those parents are worn out.  They came to this organisation, I was just there as an information hub, because a lot of parents don't even understand what autism is or what cerebral palsy is.  So for me, it was an information hub.  I don't have the capacity to give out wheelchairs.  But I have the capacity to share what I have referenced and what I have learned.  So it also goes back to you can't bite the hand that feeds you.  You will find that the AU would give money to the government and the government ‑‑ you can't now turn around and tell the person that's giving you money that you are not doing enough.  So it really needs to move from this more to people living with disabilities and us as parents.  And also one more thing Dianah, what are the positive stereotypes are there, you said there are a couple?  I am at the back of my mind, I can't think of any other positive stereotypes and the fact that Ubuntu ‑‑ the fact that you spoke about Ubuntu, like also to me as a parent, what the community has done to me by having this child is more than what they would do if they had known.  So I feel like we are spending so much time and facilities and money on people that we shouldn't be teaching, yes we need to capacitate parents, we need to capacitate parents because we don't have devices, so we need to be taught like how to position, how to feed, we don't have physiotherapists, we don't have speech therapists, so let's capacitate the parents to say okay you have this child, this is how you do a mini physio session at home.  This is how you do speech, this is the speech ‑‑ things that you can do at home.  I feel like in Africa, we are trying to solve the problems from the top instead of solving them from the bottom and going up.  We are talking of getting more people employed.  How do you get more people employed when you don't have schools?
One more thing that is killing me every day is my daughter is in Botswana.  There are people right now that would kill to get my daughter to go and make medicines, because they believe that she is sin free, she hasn't sinned, she hasn't done anything.  Also when it comes to people living with Albinism, we know that they are used for potions, why are we not seeing our governments putting more laws, or putting say if you are caught doing this, you are going to go to prison for life.  Those are little things that we could improve our life.  Like I am afraid right now I could get a call that somebody went in and snatched my child, but if the president comes up and says if you do this and this, these other things that are going to happen.  Let's make it very straight.  Like there is a word in my language that is close to handicap.  It's still being used.  You know.  Why can't we have it on black and white to say that if you call my daughter that, I can take you to court?  These are the things that we need to be thinking about and doing from grass‑roots and then we build up.  But right now, we have networks in Africa.  We have parents, I could make a phone call right now and talk to parents, we have parents that are waiting to be capacitated, like they are not capacitated.
As I speak, during COVID‑19, there was vaccines rolled out, children with disabilities were never put with other people like HIV positive or the elderly.  As I speak my daughter has never gotten a vaccine, not only disability ‑‑ not only COVID‑19 vaccines, but your vaccines that are rolled out at mainstream education.  And we have put down reports for these, I have written to the Minister, I have written to UNESCO about it.  Nobody cares.  So we need people like Dianah to sit down with us, and come up with policies and laws that are clearly meet our problems, because we are still trying to ‑‑ we are doing things not in the right order.  So until we get that order properly, that's when things can change.  But otherwise, Dianah, I am ‑‑ I always read what ‑‑ your work, I follow your work, she is doing a great job, but she needs more people like us to rally behind her and say we are the people she is talking about, this is what we need.  Thank you very much.
>>:  Thank you, that's a really brilliant contribution.  Did I have somebody else over here that wanted ‑‑ so I am going to take this third question and then I am going to go back to the panel with the three questions.
>>:  Good afternoon everyone, so thank you panellists, it was a really interesting presentation.  My question will be to Dianah again.  I think she has covered a lot of points.  Thanks Dianah for introducing Obuntu Bulamu, I hope I pronounce it correctly.  It's actually a very promising practice and I would say ‑‑ so I work as an international aid worker, and we have a similar programme called inclusive communities where we provide training for parents, community leaders, we engage with teachers and children with disabilities.  So I want to collect some points so that we can actually improve our current programming.  So Dianah the questions I think there are three questions: how this programme Obuntu Bulamu, the pilot programme in Uganda address the (indiscernible) within the persons with disabilities, like persons with disabilities is a much more heterogeneous group.  How do we address that?  
The second question is that I understand this programme is set in schools so, how about children with disabilities, especially children with psychosocial disabilities who cannot attend schools are incorporated within this programme and third is like where are the advocacy efforts that this programme has been identified?  Because until and unless the policies or the laws change within the country, we cannot go further.  I understand things works from the root, but still it needs to up, and it needs to go beyond the ‑‑ beyond the societal concept and to reach into a policy context.  These are the three points they would really appreciate if you could reflect on, thank you.
>>:  Okay, great.  Dianah I think most of the questions are for you, although I know Rachel wants to come in on one of them.  So really going back to the second contributor who talked about the African protocol, and how do we really get political mileage and influence decision makers around that programme?  And the three questions from the last contributor, how does the programme address heterogenealogy in groups?  How about children who are not in school and how do we influence policy itself?  And from the online chat, they were wondering about further detail about the programme, how long ‑‑ how large and how long was the roll out, and can you give practical examples about the programme?  So maybe a bit more detail about the programme Dianah, would that be okay?
>>:  Yes, I think that's absolutely fine.  Maybe I will start with the question about the protocol, and then go to the further details on the Obuntu Bulamu.
So in terms of where we are at with the African Disability Protocol, I think there has been a lot of progress has been made particularly in the last two years.  There is a lot of organisations besides the Centre for Human Rights, which I am with, that are working to convince governments to speed up the ratification of the African Disability Protocol.  And we came from having three ratifications about two years ago to having nine ratifications so far.  So I think we are very close to the mark, we just need six more, and then we have the 15 that we need for that to come into force.  So there was someone who said as well we shouldn't use ‑‑ rely too much on a top down approach.  And when we place so much emphasis on the protocol, maybe that amounts to a top down approach.
I think what I would say to that is that the issues that we address are rather complex issues, and that one approach probably won't do it, so it's not that we need to phase out a top down approach entirely, but probably we need to mix ‑‑ have simultaneous approaches at the same time, deal with issues at a community level, but also address issues at the legal and policy level as well.  That's also very important.
Then in terms of the further information on the Obuntu Bulamu programme, so yes, there is websites, there is a lot of information online about the programme, so one site that you could visit is the Ghent University website, if you just type Obuntu Bulamu there,  it will show up.
What I probably should have done is given is disclaimer and said that the Obuntu Bulamu programme was not implemented by us at the Centre for Human Rights.  So it is merely ‑‑ it is a programme that was implemented, it was a collaborative effort between various universities and we were not involved, but what I was doing was just sort of giving you ideas about it.
So for that reason, I may have some answers but not all, so for example the first question, which is how does the programme address heterogeneity?  From the research I went online, I didn't find any references to the idea of heterogeneity.  I am not sure I can address that question adequately and I wouldn't want to in case I misinform you.
Then I think a very important question that was asked as well is how about children that cannot attend school?  And I think that's a good one.  So I think the programme didn't simply deal with children in schools.  I think it started there.  But it also involved communities.  So the parents, the peers, anyone who was within the community who was known to have a child with a disability was involved, even though the starting point was the schools and maybe the meetings were taking place possibly within a school setting.  So I believe that to some extent, even children that were not in schools were included in the programme.
And then the other question was has this led to any legislative or policy change in Uganda?  Not that I am aware of.  But also to bear in mind that change takes time, it doesn't happen overnight, particularly where laws and policies are involved, the formulation of law takes time, it's a lengthy process, and probably involves negotiations with a different set of stakeholders all together, beyond the community.
So I hope that I have adequately addressed those questions.  I will leave time to my fellow panellist as well in case they want to chime in.  Thank you.
>>:  Thanks Dianah and Abby do you want to come in there on anything or share any information you can point people to?
>>:  Sure.  So our APRIL's website, on the website question has a tonne of information including backlogs of a lot of our conferences, information on the programmes we run, a lot of resources.  Of course this is US based, we are a United States based organisation, but I do think that the principles that we operate on can be applied generally to people with disabilities, especially because we are a cross disability organisation, so here in the US, many organisations are focused on specific disabilities, you know there might be one for autism, one for cerebral palsy, one for spina bifida et cetera, but we are cross disability, so the folks that we work with, and the organisations that we work with are also cross disability.  If you go to www.APRIL (like the month)‑ rural.org you can find our website and all of our training information is there.  I will say that because we are cross disability, we have to work really hard to make sure that everything we do is accessible and sometimes people's accessibility needs interfere with one another.  So trying to figure out how to manage that has been a really unique problem that we have worked to solve.  And I think that overall we have done a pretty good job, so lots of that information is on the website, and if you have any questions, my contact information is there as well. 
>>:  That's great, thanks Abby.  Rachel do you want to share any details there?
>>:  I just return to the first question, and yes, we also have a website www.LEAPIreland.  I can share that with you afterwards.  In terms of collaborating with different family led organisations, we are happy to do that and share our experience and some of the programmes that we have developed.  So for example the family leadership series can be delivered fully via Zoom, but I am very conscious that solutions or approaches that we have developed here in Ireland aren't necessarily going to work in your contexts.  And I just want to be really, really clear about that, because the challenges that you are facing are very different, and yet I would say that the power of family, with a vision and a fire in their belly and the power of family connected to community, it's the same everywhere.  It's the same everywhere, and yes families get really wounded, and really hurt and families get exhausted.  But at the same time what are you going to do?  You can just throw your hands up and say it's awful, it's corrupt, it's unbearable, there is no funding, or the funding doesn't get to us.  But then you still have to get up the next day, you know.  We have to go on.  And we have to have hope and hope really comes from us putting our resources together, but like every now and again we do have to go oh my God, it's unbearable, it's impossible.  But then we just have to get up and go again, isn't that it.
>>:  Okay, we have about 12 minutes, maybe 11 minutes left for questions, so there is somebody over here.  I know it's get to go the end of the day.
>>:  My question was for Abby.  I wanted to find out, you promote independent living in the rural part of America.  But I wanted to ask did you do the course via Zoom and do you allow or would you allow to have international participants to go there, because so that from online part, I would want you to help us like in Zambia, so that we put the independent living in the African context, because I am sure the rural parts that you call rural in America wouldn't be the same as in Zambia, so I think maybe if you would be very kind, you share with us maybe the guidelines or how you ‑‑ on how you promote the independent living so, that we can vision it to the African context in the independent living.
>>:  Abby?
>>:  Yeah, absolutely.  So generally speaking our programmes have just been US based, but I know we have communicated with folks from all over the place, and I would be more than happy to share my contact information.  I am in the discord for this week's conference, so I can put my email address there as well.  
But generally speaking, our idea of independent living is that people with disabilities should be the people that are in charge of their lives.  We, I am a person with autism, and I know what it's like to be autistic.  Probably more than somebody who is not autistic would know, because it's my lived experience.  And I know that this is the case for people with lots of different kinds of disabilities.  So our centres for independent living are required by law to be at least 51 per cent owned and operated by disabled people.  So that way it is the people with the disability who are in charge and who understand that lived experience, and at APRIL, we are a disability led and run organisations as well, everybody that works at APRIL is somebody with a disability.  So when we have these conversations with people from all over rural US, we can have that lived and shared experience.
We also ‑‑ our centres focus on communicating directly with ‑‑ we call them consumers, who are disabled, rather than speaking to non‑disabled parents, or even if a parent has a disability, if we are talking about services for that youth, we want to communicate directly with that youth.  Because we want to make sure that their needs are getting met and that their thoughts are being heard, whereas in a lot of other agencies here in the US, they don't communicate with the person with the disability, they communicate with the case manager, with the parents, with other people.  And the person with a disability's needs and wants get pushed to the wayside.  So we make sure that we are doing that communicating in that way, and that we are allowing people to connect with each other.  I think most powerfully what we do, I have said already, is our peer support.  So when we talk about peer support, we don't always mean in like a group therapy kind of context.  I am a therapist by trade, but the rest of our staff is not.  So our peer support groups are really where ‑‑ they're almost like resource sharing sessions where for example we had a call on transportation recently, and we had someone come in and say hey we have this really successful transportation programme, and we have volunteers that are ‑‑ we do background checks on them and then they come and they volunteer their time to provide transportation to people, through our centre.  And that person was able to share everything that they did with the other programmes from other States, so other people could take that back and bring it to their area.  So it really is about that connection and that level of understanding while also recognising that people with disabilities are experts on being disabled, and what it's like.  I hope that's helpful and again I am happy to share my contact information for more information later. 
>>:  That's great, we have five minutes left, we have time for one more question, is there anybody who hasn't had a chance to come in?  I suppose I am really struck by ‑‑ from this session, was kind of everything I hoped, it was very solution focused, but what if really found really great from this session is the generosity of our three speakers in terms of want to go share more, and to help more people who are here attending today whether you are in person or online, and to share their expertise and help you to adapt that to your own context, to the context that you all live in.  Which I think is really, really critical.  I suppose I will ask the panel do they have any one last comment that they want to make, any burning comment they want to make?  So we might finish up just a couple of minutes early to keep on track with the time.  So I just want to say thank you to Abby Ritter to Dianah Msipa and to Rachel Cassen.  I think that the three presentations were really, really excellent.  And I certainly learned an awful lot from them, so we might give one final signed applause.  Is there any instructions for the next session?  Is it the poster session?  It's finished?  Okay.  So I think that's it for this session, so thanks a million.  I thought the discussion was really good and really, really ‑‑ gave me a lot of food for thought.  I hope the rest of the week goes really, really well, I am raging I won't be here for the rest of week, but I hope you get a lot out of it.  Thanks a million.