right good morning everyone how's everyone doing all right data we're going to be talking about data I always we've got some data Geeks up here as well as some tech needs so we'll kind of combined on that right and we love it and we get pretty excited about it right you see the grin on my face I know I know that's just the way it is all that's all granny just to let you know my name is Christopher Lee I'm a VP of G3 ICT I'm also a managing director of iwap it is an honor to be here with this distinguished panelist I have um next to me we're going to do a few things to start off when you do ask a question towards the end make sure you say your name for the the captionist if you could do that that would be very helpful and we're going to go through everyone's going to do a short introduction about one minute introduction themselves and then we'll come back in and have a little deeper dive into data and Technology the the actual title of this session is using data to create change I think that's a powerful a powerful statement and I've been collecting data in different ways throughout throughout my career and one of the things that as a past Academia you love to do is to collect data and you you spit it out into a report some sort of outcome statements and so on the problem with Academia I know I probably some other people share with this is that usually when you get federal grants or and you start looking at data a lot of times that data doesn't the outcome doesn't go when you will right it sits on a digital shelf collecting dust and so that's one of the things I've seen with the challenge of data and we'll be healing about challenges and about models of collecting data today the other area that that I think is important to keep in mind is including people with disabilities in all parts of a data collection not only the collection of data up front when you're designing the questions and the models and we hear this a lot at zero project but it's something that can get lost when you design a research study and it's something to keep in mind so that's another point I want to bring in today and you'll hear that throughout that theme throughout the session today so I'm going to turn it over to Ellen first Ellen when you introduce yourself hello everybody I'm Elaine Katz I'm senior vice president of Grants and Communications at Kessler foundation in New Jersey I'm excited to be here I'm not that probably I'm not the data geek then on the panel I've learned how to really use data and that's why I'm here to really show how data can work for advancing whatever you're doing for people with disabilities hello I'm Rylan Rogers and I'm the Disability Policy advisor at Microsoft I'm a white middle-aged woman with brown and white hair and I've worked on disability policy for almost 30 years and I think this is the transformative moment where we're finally going to get good data and data matters to everything and creating change so I think this is the place to be at the moment hello everyone I'm happy to be here I'm Daniel monton the CEO of the center for inclusive policy that works on developing evaluating and supporting inclusive policies and I was alone been a long long time member of the Washington Group on disability statistics and uh previously senior Economist with the World Bank so very happy to be here hi everybody I'm Thomas Shakespeare I'm professor of disability research at the learner School of hygiene tropical medicine we have a center called The International Center for evidence in disability it contains lots of people who do lots of research and I don't really understand numbers I am on Dan's board but I don't understand numbers but I do understand people and I've been talking to disabled people for more than 30 years and trying to publish what they say because I think we need to amplify the voices of disabled people and particularly obviously through quantitative but also through qualitative data and and I'm here I will talk further about what I'm here for later thank you I'm Felipe trevison I'm an associate professor at the American University School of communication and deputy director of The Institute on disability and public policy over there in Washington DC I am a 40 year old white man with still dark hair somewhat wearing a blue blazer and a white shirt blue tie my interest really and my the focus of my work is on political participation in people with disabilities and technology and all of that involves and like Tom said very interested in getting the real experience of people with disabilities and seeing how we can work with different models of data collection and data sharing to bring those voices into the mix when there is policy change to be achieved thank you all right Elaine we'll start off with you describe myself first I'm an older white woman with short brown hair brown glasses and wearing a brown sweater blonde shirt and bright red beads um I wanted to share a little bit about Kessler foundation with you for those who are not familiar with our work we're located in East Hanover New Jersey in the USA and we're a public charity our mission is to change the lives of people with disabilities through Rehabilitation research improving cognition and Mobility for individuals with various types of disabilities we're also the leading funder of innovative hiring initiatives investing more than 50 million dollars over the past 14 years in New Jersey and throughout the U.S to create genuine economic opportunities for people with disabilities as we all know data is key to driving change knowing how best to utilize it is important since 2015 Kessler foundation and the University of New Hampshire have collaborated on four different surveys centered on employment and people with disabilities these surveys are designed to be nationally representative scientifically rigorous and a transparent means of exploring the experiences of Americans with Disabilities and finding and maintaining employment the goals of the survey is to refocus the national discourse on employment and disability identifying current gaps uncovering issues and providing new areas to explore as a targeted framework the key findings of our 2015 survey for Americans with Disabilities was a telephone survey with three thousand people across the U.S and we found that people are striving to work people with disabilities are engaged in activities such as preparing for employ employment searching for jobs or seeking more hours and successfully overcoming barriers in the workplace in 2020 we looked at the experiences and work outcomes of 4 300 college students with disabilities ages 20 to 35 across the U.S that reported at least one disability our survey dispelled many of the myths on student experiences on campus and work however I'm not going to review the data today because of some of the limits we have on time in our 2017 survey the first of our employment series we surveyed more than five thousand supervisors from across the U.S identifying the practices used by employers to recruit and hire onboard and train retain and accommodate people with disabilities and we also asked about the effectiveness of these practices whether they were used or not used we also looked at the supervisors and upper management commitment to hire people with disabilities this was the first national study to look at the effectiveness of these practices during the pandemic lockdown we suspected that Employment Practices as well as accommodation practices had changed because of covid so in May and June of last year we conducted another supervisor survey to assess the impact of the pandemic on workplace experiences of people with disabilities the new survey mimicked the prior one but included questions related to covid and business practices this five-year gap between the surveys allowed us to compare the responses spending the critical timeline a pre-pandemic pandemic lockdown on pandemic recovery enabling researchers to capture those changes and the processes employers were using as well as the changes in attitudes of buffer management sorry about that so slightly more than 4 000 supervisors people with disabilities across the U.S were in were surveyed employing more than 25 people in their companies this included public and private organizations and we found that employers had increased their goals and commitments to hiring people with disabilities over the past five years current gains were seen in recruiting and training onboarding employees more specifically we saw that more supervisors now were in organizations that had a goal of hiring people with disabilities we also saw that recruiting efforts increased overall in organizations to recruit people with disabilities and more organizations which is good for any of you practitioners are partnering with on the ground ngos to help in that Recruitment and onboarding processing we also found that organizations were using Recruitment and auditing practices to really count and look at those initiatives to provide some accountability so we also found the importance that supervisors came to recruiting accommodating and retraining employees with disabilities we're invested in the whole process although we saw the same outcome in 2017 survey it was much more pronounced in 2022 in terms of hiring goals alone those of upper management and supervisors were closely aligned as we expected to see organate organizations increased accessibility related to hiring practices to recruit candidates with disabilities such as using more accessible applications and interviewing techniques and the review of hiring practices to ensure disability accessibility more than 76 percent of Supervisors worked in organizations that had established accommodation practices most created these practices after covet as you can imagine 78 reported that their organizations established or changed their accommodation practices due to issues of coven 19.
we also found that there were increased diversity Equity inclusion and accommodation practices to educate employees about disability that were also present so we also saw and looked at long covet and accommodations and this has been an increasing issue in the United States especially in worldwide looking at long coven more and more organizations and public organizations are starting to see that this is an increasing problem and really has some implication for benefit planning as well so we did see that 40 percent of Supervisors ex supervised employees who had long covid even at this conference I've started to talk to people here who are experiencing long covert symptoms of the supervisors that we conducted with the survey we they stated that 58 percent received accommodations of their employees that they were working with 11 percent reported not providing accommodations because they were not severe and as you know about some of the symptoms of long covet it takes a long time to identify some doctors are not recognizing long covid so therefore employers may not be providing some accommodations because they may not recognize it as severe enough to affect productivity but more than 40 percent again of Supervisors um had an employee that they were supervising and working with that had long covet and we do suspect that this will grow so when taken all together these results really suggest that while many supervisors and organizations May support employing people with disabilities when it comes to the details of realizing that goal supervisors are perceiving less commitment and support than needed from upper management and unless the seniors of Senior Management and upper management have a commitment to hire initiatives to hire people with disabilities will not be across their organizations specifically Employment Practices are more effective and widespread across organizations now since covet we're seeing more job shadowing on-site training using short-term outside assistance to help new employees learn jobs so lastly the more effective and use of flexible work Arrangements such as accommodation whether it was working from home or job sharing are flexible hours is really what we're seeing happening and in fact more supervisors are reporting that flexible hours and accommodation practices are in most of their organizations to you wow you know that was a lot of data to impact where can we find the the results of this I mean uh you can find the results of all our survey plus I'll be here if anybody wants to talk about some of the results there's so much there I mean just the the college study around accommodations um in the states particularly accommodations on track available on K-12 so be fascinating to see what kind of information on that and then just the recruitment for employees with disabilities in the AI recruitment applications that are causing a lot of issues right now I wonder if there was anything addressed on on that because it was something that's really hitting the disability Community pretty hard right now we didn't look the sticks primarily students without disabilities and they did use the services that were available to them so that was one of the myths that really just that we were trying to dispel and we saw from the results of the survey all right thank you Rylan so my slides magically appear they will pop up is happening right now right so I'm thrilled to follow Eileen because all of these pieces fit together in terms of our shared priorities and how do we move forward so at Microsoft we think about things really holistically across our mission to empower every person on the planet and when you hear every person on the planet apparently we do not have slides but that's okay um we hear every person on the planet obviously that includes many individuals with disabilities across the world okay do you want me to just keep going or you want okay so I think it's really important to think about what data says and how we use data across all of these pieces and I really wanted to dive today into three main areas um the one is top of Mind perhaps if you use your favorite search engine you're reading a lot of the in the news around the world of AI and how it will unlock um so many things in our daily lives the reality is that the world of AI is a massive user of data and it is what's fueling Innovation going forward and those of us that live with and are part of the disability Community know that we have some long-standing barriers in terms of inclusion and representation in various data sets so attention to that is an incredibly pressing need at Microsoft we had identified a shared problem pretty early on with our partners across the technology industry and that is in the use of AI and captions which are by the way super cool and Incredibly helpful in translating language access and other pieces but they were leaving out some patterns of speech so many of us that live with disability experience different types of speech patterns so some of our colleagues who have intellectual disabilities or physical disabilities that make their speech pronunciation and speech patterns non-typical often their communication is not captured well by captions this is actually true of human captioners but you see it in a more distinct way in the AI captioning so we have entered into a partnership across the tech industry to really build quality data stats that represent and a variety of speech patterns so that we can get to a place where we can feed that data into Ai and get to more Equitable access and I think that type of attention to what's missing and how are those missing pieces impacting access use of AI will be at the Forefront of innovation going forward I share that because it's hopeful it's empowering but it's also a call to action for all of us it helps us think about where do we see the barriers where are data that we might be aware of in a silo how can we bring it together because when we're looking at AI they're Mass Data Systems so you need volume you need big numbers and many of us have tiny Pockets so this is the moment for sharing because sharing is caring and it will help us to a greater sense of innovation so I think that's a critical piece to be thinking about when we're seeing these Innovations roll out we're seeing them maybe not quite work for all of the points of disability that we're experiencing and we're thinking about what are the solutions and it really is going to come back to how do we build those data sets and how do we inform them globally so that's one place where data really matters the other um we are in a room that was previously having a great conversation about Innovation happening in Africa and really great topics but one piece that came up over and over again and I've heard yesterday and today is the reality that we don't have good data at the nation level and internationally about what is the disability population many of us talk about one in four one in five and we we share those numbers but we don't have accuracy and we don't have the same measures across countries so I've been really excited to see the work that's happening at the World Bank Microsoft has a tiny role in supporting their incredible effort to really stand up a way to look from country to Country what are numbers and that's a real unlocker it changes the ability to come in front of government at any level and say this is who we're talking about it also changes the ability of businesses to look at what is the market share who am I trying to sell to it also changes the way we see ourselves it's a way for young children with disabilities to come up to see who I am in the world and I'm part of this large group in my community in my country and across the world so that getting to right and really looking at when we're collecting data across the world about representation really looking and representing everyone is a historic problem and we're making significant progress going forward in the United States the federal government is reframing how they collect data and it's on all fronts it's really understanding that in the past historically we've done a pretty good job of capturing the experience of of white males but now it's time to capture the experience of all of us and to see that translated around the country will be transformative so in three years five years ten years when we come to zero conference we'll be able to say with greater conviction what do we mean when we're talking about the disability Community what do we mean when we're talking about that percent of the market what do we mean when we talk about who we are together so I think that's an incredible unlocker and I'm excited to see that move forward in a global scale the third piece is a little bit more business Centric many of us in the business World talk to our shareholders about our value our ESG and there's a new conversation about how do we include disability in that space there's been some hesitation for companies to be transparent about how many people with disabilities do you employ and it's time to make the shift away from that at my Microsoft we've been transparent and Reporting those numbers in our annual diversity and equity and inclusion reports it's been helpful you can see the growth but it's also empowering because it's that Talent the disabled Talent at Microsoft that's driving The Innovation that's driving the tools that's driving the products that are meeting the needs of everyone and so knowing that we can report on that that we can claim that we can open the doors wide is important and being transparent about it so that you know as a job Seeker whereas a company with high representation but also you know someone who wants to invest your money who do you invest in and really changing the conversation about value and that it's part of corporate values similar pieces can be said about reporting transparently around training around the role of ESG and around the products and measurements you've served so really thinking about how do we use internal data for public reporting to change change the global economic conversation about the value of disability it is the change that will make a significant difference going forward in terms of our economies so really that is across multiple places and because I love policy like it's my hobby it's my life it's who I am as a person it would be remiss to say that all of this is incredibly important but having these pieces talking about how data is driving Innovation through AI looking at what data is saying about who we are as people and how data is moving our economy is going to be the fuel that progresses policy makers to make the policies that serve all of our lives so it's our role as individuals as ngos and as corporations of bringing that data to the policy conversation lifting up the real disability story and moving forward to make great public policy across the globe I'll turn back my time okay Ireland that was impressive there's a lot going on also excellent I know there was exercise and we were just testing you to see how well you did you know you did excellent thank you um just curious the World Bank um what's the future of that that project The Hub yeah so I'm scanning the room because I thought Charlotte was in the room and I can talk about that exactly so it's really the World Bank has put together a disability data initiative um to try to bring together information on on what countries have data on disability and how they collect that data on disability but actually there's been great strides made in the last 10 or 15 years on and we actually do have much more comparable data on disability prevalence measured in a consistent way in in many many uh countries over well over a hundred countries have used the Washington group questions on disability the short set in their censuses and household surveys over 70 countries have just used the Washington Group UNICEF child functioning module to try so we for the first time now for for around the world we have a comparable way of identifying children with disabilities in household surveys to make international comparisons so so um there's still we still have a lot of improvement to go but we have much better data much more widely and you can find a lot of it the disability data portal which was run by L Leonard Cheshire which has just moved over to sitesavers and the disability data initiative which is an effort by the World Bank to try to Aggregate and and make it available which countries have which data on which types of indicators and we're lending our support and resources to take some of that data and create data visualization and different ways to access it so that it can be used to move things forward effectively great well thank you so much and we'll make sure to get your slides out then I apologize for that all right Daniel we're gonna see if we have some slides for you do I get my slots yeah we're going to test you based on Rylan I'm shooting pretty good in just a minute and see if they're coming if not I'll start okay there we go okay so when most people when most people talk about disability data they talk about household surveys and censuses disaggregating this sdgs and things like that and that's vitally important and we were just talking about the disability data initiative but another source of data which I think deserves more attention is Administrative data countries around the world are collecting Reams and reams of administrative data as in a sustainable way and we want to make sure that those systems also address the issue of disability and inclusion so the example I'm going to give you today talks about education management information systems almost every country has one now if we want to talk about the experience of children with disabilities in school we need data on three types of things first the data on the children themselves we also want daily and children out of school the accessibility and inclusivity of schools which the environment like and what are the barriers to receiving education the household surveys tend to give us the first one they don't give us the second two so if we want to look at children in school what are the sources of data well there's education management information systems that's the administrative data that's collected by the ministries of Education there's the censuses there's the surveys there's financial data there's a whole range of data and we want that data to be harmonized as much as possible we want the ways to identify children with disabilities or to be the same in in various parts of the system so an overview of the Fiji Ms which is one of my favorite examples of good administered systems they collect data on the students so the children's functional difficulties their support needs which support they're currently getting what are their learning outcomes and it's a granular system they collect data on every child there's some emesis around the world especially in lower income countries that collect data at the classroom level or the school level but the femis Fiji education management information famous collects data on each individual child but they go beyond what and there's some other countries that do that too but where they really Excel as they go beyond that to look at school assessment what is the date on human resources materials and the physical structure in the school so the student learning profile is filled out by teachers but the parents are brought in and when the teacher senses there's some difficulties the child they're having the parent is brought in and together in a Cooperative way they fill out that student learning profile which I'll explain a little bit more in a minute and it's and it's done and it's filled out for any child who's having any kind of problem in the classroom so it's not aimed owe children with disabilities it's aimed at what children are having difficulties in the classroom that the school feels they need to address to help that child succeed so the first part of the student learning profile they ask what assistance is the child already getting do they use glasses do they use a wheelchair do they have orthotic devices do they use a computer program to a screen reader okay to get a sense of what supports exist for that child then they look and see well what are the difficulties the child's having various functional domains and here they use as a basis the UNICEF Washington Group child functioning module I was just talking about and this is important for two reasons first it's a good module but second it's the same module they use in the household surveys so they have they're identifying children with disabilities the same way in the administrative data and in that in and in the household survey data so they can use the two systems together they can work together and they ask you know does the child have difficulty seeing things close up or far away no difficulty a little difficulty a lot of difficulty or cannot do it all and they ask about hearing gross and fine motor speaking community education and they really get a good profile of where does that child having difficulties then they ask well compare the children of the same age how much personal assistance does that child need does the child need have difficulties moving around the classroom is it with communication is it with self-care like eating or going or or toileting and they give say oh the child's capable of doing this the child can do it if a friend is helping them a child needs personal assistance so you're really getting a really good profile of what that child needs then they record what adaptations they're already making okay so it's a child sits close to the board or the teacher is there a need for this or no the child needs a teacher's a the child needs sign language and they they record yes we do this for the child no there's no need the child doesn't need sign language interpretation or it's not done but we think there's a need so it it so in the planning for the child in the planning for the school we can see um uh what the child needs and then they have the school of accessibility and inclusion assessment where they go through and they look at the physical infrastructure right are the ramps is the toilet accessible they look at the human resources uh is there a braille specialist is there a speech therapist is there a speech therapist in the school is there a speech therapist that supports the school from a distance if so how often does that be speech therapist go to the school once a week once a month once a semester um to again get a sense of what are the resources what's the environment going on in the school so you can see it this is Administrative data that's collected on an ongoing basis so we don't have to lobby for a a special study it's not a survey that gets done once every two years once every five years you know special disability surveys they get done if you're lucky once every five years less frequent than that this is ongoing data collected at for each individual school for each individual child that really gives a full picture of that child and what can that famous do it can track which schools are managing to attract and enroll children with disabilities now what about the children who aren't in school well they're not in the MS but there are some countries that are trying to address that in Armenia they've they've they have connected the MS data and for their schools with the social protection data so they can see oh this child is receiving disability benefits is that child in the MS no then they can see we've identified a child with a disability we know what type of disability and we know that child is not showing up in their school okay so they've connected it to that's not that famous hasn't gotten to that point but that's an example from Armenia um where students or disabilities are progressing and learning because the femis also collects information on achievement right so the kids in school great but is the kid actually learning is the kid actually achieving their the Milestones that are that are um that we expect for that child um they can disagree by Den by gender and and disability type and location by attendance patterns they can see who's dropping out are they dropping out in schools where they don't have uh they have a lot of poor infrastructure Etc they can do that kind of work which children have IEPs and and also the system automatically refers children to services so they see okay this child needs this needs a b and c they're getting a in the school great they're not getting B and C so we're going to refer them and then they collect they connect that to the budget data so they can now see how much money will we have to spend to meet all the needs of the children in schools now that aren't uh that aren't being met um and they can report on uh against uh the policies I see this orange coming up so I'm getting nervous special inclusive education and they can plan they can do policy planning so it's an example of an administrative data system that's taking really a social model approach because they're not just looking at the child they're looking at the whole system and and the whole goal is to try to Aid the child of course it's not perfect I can talk about the you know think things they need to go but I think it's a good example we need to focus not just on surveys we need to focus on that administrative data that's being constantly collected by our governments let's make sure that it's taking the same kind of approach that the femis is taking so thank you very much So Daniel there's a lot of data that's being collected and I was really interested in a couple of the points specifically around cognitive disabilities and extra time I saw some of that listed there I'm sure that all the options went there but I was wondering if tutorings being being looked at because the cost of tutoring is very expensive and so on is that something that's being collected well I'm I don't I don't think they're collecting our needs of tutoring outside of the school but they are but if but if if we had time to go through all of those menus you would see that they ask about whether that they need a teacher aide whether they need sort of special special assistance in the classroom and then whether they have it right because because even if they've identified the child needs some extra tutoring they may not have the resources but at least they have the record that we have these children in this school who are receiving that extra attention that they need and the children these other schools that aren't and then we can see the effect on their learning on their Dropout rates to see what the impact of providing that support where they were able to yeah I love the fact that it links to the budget I'm fascinated to see what happens there on that side because I'm just thinking you think about assistive technology in the expense of assistive technology like an AAC device or you know some speech you know software and so on giving the school that knowledge to what to put provide and then regarding teacher training tied to that because a lot of these assistive technology devices that we know go into the the schools but the teachers aren't trained on these devices so there's all kinds of great information that can be stripped out of this I just say very quickly I before I came here I called them up I don't say how are things going and they said um at the school level it's working really well they feel that's really improving the operation of the school where they're having problems is aggregate aggregating it up to the National level and translating that into National policy so so the system's working well but it hasn't really I think achieved its full um potential yet because they're getting but they're getting there excellent thank you for that all right Thomas your next thank you very much indeed thank you for welcoming back to zero project um I have some slides so I'll just Witter into the layup here um uh I'm from the International Center for evidence and disability and I want to really talk about evidence um more than data I've already told you that numbers scare me um but I want to know whether the why not just the what so what Dan has said so wonderfully is a lot about the what um but having done research on children at school in Malawi and in South India often it's the attitude of teachers the attitude of parents and indeed the attitude themselves which is the why so I really want to drill down and I think often qualitative research is good for that so um our International Center for evidence and disability is doing impact evaluations of a lot of attempts to make a better world so we all have and the zero project is full of wonderful ideas wonderful Innovations um but do they reach people and do they work and a lot of ideas are charismatic we love them but there's no evidence that they will work and what we want is actual uh bums that seats we want participation we want inclusion and for that we need to work out from the start to the Finish can we measure change and that's what we're doing at the International Center for evidence and disability for example my colleague Hannah Cooper is a very interested in healthcare and is very much part of the missing billion initiative we know that there are more than a billion disabled people in the world that's what the world report on disability in 2011 said and I think that's a large percentage and a lot of them don't receive good health care and a missing billion is about Innovations in training of Medics and Healthcare professionals it's about Innovations in infrastructure the the buildings the examination couches and it's about also Innovations uh I think in thinking because disabled people are like everybody else we get all the normal ordinary problems we need to be screened for the issues that present as we get older as well as our primary condition we don't want to have um uh uh you know the the sort of focus only on the impairment but not on the uh the condition so our Center International Center for evidence and disability is all about doing the both the quantitative and the qualitative the the what and the why of inclusion particularly in Bangladesh Kenya Uganda South Africa Peru um we have we we can't possibly work with all the countries but we do work with some but I'm here really to about the disability evidence portal and I would encourage you to collect one of my leaflets and to look at disabilitys.org because it's all about trying to make information more available to policy makers so what we do as you know in the academic world we do systematic reviews and a systematic review gathers together everything that we know about a solution to a problem um and it is systematic it is everything we reject thousands of irrelevant uh papers and we focused on the 10 or 12 or 20 that really say what's been tried and whether it works whether it has an impact and that is the basis of the disability evidence.org disability evidence portal that what we're doing is we're asking questions such as how to include disabled children in school or how to meet the mental health care needs of young people with disabilities and we're looking at what the evidence is we're going out to all the academic journals we're looking at CIS made reviews and where there is enough evidence we're answering that question we're saying this is what the evidence says so part of my encouragement to you and it doesn't matter if you're working for a university or you're working for an NGO or you're working for a government is publish publish publish let us see the difference that you are making because then we can put it in a systematic review and then we can put it into the evidence portal uh the disability evidence.org and make that available because a lot of not all but many academic papers are behind paywalls they're not accessible to people and what we're trying to do by the systematic reviews and by the reviews reviews is to make that evidence available free to everybody that needs it so how do we organize it well the questions organized according to the CBR Matrix that you're all familiar with so there will be Health Care questions education questions livelihood and employment questions support and inclusion questions many of them are cross-cutting um so they they you know they feature more than one a column if you like with CBR Matrix and of course you might notice we had a terrible impact of covid we've already heard about covid and we pivoted to prove it to try and look at what the evidence said about how to protect people how to solve problems which disabled people particularly have and by the way I should also say that at our Center we did a study of disabled people in Britain both in Scotland and in England and their experiences govid and that is published primarily in the general social policy Administration but also in different aspects like people with intellectual disabilities people with psychosocial disabilities and people in the care system we publish what we knew from what we had researched from the why and all the barriers that disabled people faced we know that disabled people died at higher rates during the pandemic partly because disabled people at least half of disabled people older people and I'm afraid older people died at his proportionate rates but also disabled people live in concrete situations and they're more liable to die and the protections the masking is very very difficult for for a blind person or so not for a blind person for a hearing a bad person who relies on a lip reading um the guide dogs don't understand social distancing isolation is really bad for your mental health and so all of these aspects and some people have multiple conditions which make them more liable to die and people with Down Syndrome with more than 30 times more liable to die as a result of covid because the immune system isn't very good and they were much much um 30 times is much higher than for people with other learning difficulties but we can tell you that because loan difficulties are alone disabilities as they said in UK are on the register the GP register so we know who they are most disabled people we don't know who they are anyway so we gather data we make it available we try and get it Beyond paywall please take this leaflet so you will find the evidence portal disability evidence.org listed where do the solutions come from from you you propose them you vote for them you say what's important to you so we've worked very closely with the Commonwealth disability forum and other organizations people with disabilities to say what do you want what the questions that you vote for and similarly we work with academics and we work with policymakers saying what do you want what are the questions you vote for so please even if you don't really need anything that we put on a portal come and vote for what you want us to do and we did a disability evidence and GAP map of systematic reviews of disability and they are predominantly in health care evidence in terms of education livelihoods employment social protection is weaker and so we want you to do that research and publish it so that we can do systematic reviews and yes we are doing systematic reviews as well because there are so many gaps for example we're doing a view a review of violence against people with disabilities measures to mitigate reduce and compensate and support people we're doing a review of that we're doing a review of employment disability employment so that we can say whether this quotient system works because everybody thinks that crab system's the way to go I don't think there are any evidence that they are beneficial in all settings they're useless in Britain so we will try and do this to smoke reviews we'll try and provide the evidence and by the way we have a conference in Stellenbosch um so come to that as well I have a leaflet about that I really don't want to take these leaflets time please take them from me thank you thank you Thomas appreciate that very interesting we have so much data that we're talking about that's being collected and now being shared and it was wonderful to hear that all this all this information is being published that you can actually get access to it um in regards to voting you mentioned at the very end if you've got individuals in this audience that want to be a part of that how would they get involved well they can go and vote for the what they think is a priority we also every one of our briefs uh evidence briefs appear reviewed so if you are an expert and that could be an expert by experience he could be an expert by Academia he could be an expert by policy we don't care as long as you know what you're talking about you can peer review and in fact you can author again it will be peer reviewed we've got a kit we tell you how to do it and many of our evidence breeds are now from lower middle income countries and this evidence important itself is going to be moving to sell and Bosch in the next Incarnation same address but from Stellenbosch because we don't want it in London we want to shift to to Low Middle income countries and the other thing we want to do is get more disabled people as academics and we've got 10 phds of students with disabilities at the school of hydrogen tropical medicine and we challenge anybody in America in Israel in in Africa in Asia to have students with disabilities get their masters get their phds they are experts but we want to accredit that expertise and we want more of them in rooms like this you know that you bring up an interesting point so individuals are part of the peer review all the individuals with disabilities yeah yeah and the priority setting is not I'm obviously there are various people but we've tried very hard to make sure disabled people are well represented very nice very nice all right thank you very much Philippa okay um I have some slides as well I'm not sure we're going every other I think we'll come back not too bad I guess um well thank you everybody and I you know I like this torn to evidence like Tom said earlier on because it's really what I hope I'm gonna be able to provide here I'm gonna shift a little bit and talk about something a little bit different than what my colleagues have I've talked about before and this relates to some of the work we've been doing at The Institute and disability and public policy and specifically with two Australian colleagues of mine who I want to acknowledge here Michael Vaughn and ariadne Roman and um really this is about turning personal narratives into data for policy change we've known for a long time from policy studies the personal stories personal narratives really works when it comes to persuading a variety of audiences from public opinion to policy decision makers about the need for a policy solution to a certain first of all that the problem exists and then what the policy solution to the problem should be I'm wearing a time now where there is an opportunity to acquire much more and much more diverse stories than ever before through crowdsourcing an opportunity that has become available because of the internet and participatory media and you see an example there on this slide of such a collection tool from families USA which is a us-based healthcare organization that has been in this space for a very long time and in fact shown other organizations how to do it uh and it's a it's it's you know their portal that says share your story with colorful speech bubbles around it so the objective here is to address chronic barriers mobilization in the disability community and gather new types of evidence but of course there is a challenge people with disabilities are eager to share their experience which has led to some of these archives to you know be bombarded with submissions thousands tens of thousands some of them hundreds of thousands of entries how do we make sense of that story mass and you know turn it into what we can use as effective uh policy evidence and one way of doing that one potential solution is through what we call the datification of stories so taking a story and turning it into data and treating it as data how do we do that well there is what I like to call a technological Journey that organizations go through in deciding how to do this and the most simple form is just to use a spreadsheet to enter all of the information about a story okay that really doesn't get you a lot of benefit though if you don't have a good system to then sieve through that spreadsheet to figure out which are the really useful important stories so organizations that are really invested in this I've created what they call story Banks what is the story bank is a system that uses a fairly refined database mechanism generally built on constituent relationship management CRM software the likes of Salesforce or others that some of you may be available with which weren't originally Built For This purpose but you can build applications that attach to them and help you figure out how to use this content the principles of story banks are they're always on you're always collecting stories they're never going to be complete and Technology intervenes at all the key points when there is automatic tagging to be done to decide what the story is about and when there is short listing to be done through algorithms that will return results for a certain search that's being done what is essential to get it right is a collaboration between people with disabilities and their organizations and technology companies to be able to do that properly and I cannot stress this you know if you take away one lesson from what I'm saying today this is the one thing to really remember about let me give you a couple of examples of where this has been helpful I mean there are many and you know they go wide and outside of the disability field as well but they relate particularly to disabilities through story banking system we can use reporting analysis functions and you know procedures like a b testing and so on to facilitate matching of culturally resonant and strategic politically strategic stories to a certain issue in a certain audience two examples of that are from Australia an organized well a Consortium of organizations called every Australian counts for the best part of the last decade has been collecting and using stories to promote state-funded support for disability services primarily through the national visibility Insurance scheme which some of you may have heard about and they were really able to leverage their mailing list to create a repository from them to choose stories to be developed into a series of YouTube videos and other social media posts that contributed over the best part of three years really relatively quickly to raise support for state-funded support for services for people with disabilities in Australia from Tempest and to as much as 80 percent among the general population they did that by focusing on the framing of fairness us and everyday mundane stories that's really what they inputed in their database and what the database was able to help them with in the United States another example is an organization called little lobbyist that collects the stories of children with disabilities in this case again thousands of entries here and they were able to use that database to match um you know to pursue persuadable policy makers particularly on the Republican side and Republican media conservative media Outlets to really talk about stories of disability in a deep politicized way framing around the you know very American value of freedom and risk and loss of freedom and so on and what the effects of for example repealing the America the Affordable Care Act would have been over and over again during the time of the Trump Administration um you know there is great potential here but there are great risks as well and something to be mindful of and really something to be aware of is that and something we noticed in our research with organizations the most basic technology choices one makes have a huge impact on the ability of these systems and their evidence to be fully inclusive and to include a variety of perspectives from the disability community so there are three tensions that I want to highlight here today that anybody who's willing to engage in this type of work should be aware of and really be mindful of one of them is a tension between privacy and representation or diversity we know from research that you know people with disabilities would like to submit their story are interested in privacy and eighty percent of the organizations we surveyed for example don't collect personal information when their first submission is made nothing about age or race or gender identity is asked now that's good because it gives you a bigger archive more people might be able to contribute but then when you go and look at those stories you don't really have those reference points to understand you know is this a diverse set of stories what am I putting out there what am I choosing and what am I not so that's a first tension second tension between narrative freedom and the quality of data sets again something else that we've noticed in our research with storytellers is that people with disabilities in particular enjoy an opportunity to be free in the way in which I tell the story no word limits no big instructions on what should be in the narrative and what shouldn't be this is very empowering but can also result in a lot of noise being introduced in the system and so you know more difficult for those stories that need to emerge to be able to emerge through the big block of stories and finally and this is very important Stories We Know stories are more effective in being persuasive to the variety of audiences when there is Visual Evidence attached to them and that is why you know over half of organizations we surveyed again over 100 organizations that we looked at their submission systems and so on encourage the submission of visual content now this automatically generates a hierarchy because of how algorithms work within these systems algorithms being told that the story with a visual component is more valuable will always go back to those stories with visual components we know for a fact that the most marginalized of disabled people those who you know are associated with multiple marginalized identities because of race gender other and other factors um are less likely to submit Visual Evidence with their initial submission at least there is you know threshold of trust that needs to be overcome to be able to then contribute that type of evidence within its video or photos and so on and so that's something else to be really mindful about not just when a story is required in fact very few organizations require a photo or a video with these systems but many of them encourage one and automatically that creates a disparity between the stories that we're seeing um that's great I'm right on time hopefully I see the red one there what's the future holding more video submissions there are a number of startups and bigger organizations that are really focusing on developing off-the-shelf products for this and it's really exciting and you know they're looking into ways of capturing and making stories into Data Now using transcripts but moving forward using AI to interpret Visual Evidence and create a database straight out of a video that's been submitted it's very exciting but as I said before the most important thing is that this is done in collaboration to understand access needs diversity needs concerns that individuals may have and so and so on so thank you very much for listening um Filippo does so much there to to unpack actually um especially the political um comments that were made um I'm wondering this might be a little bit um off Kyoto but you know in regards to accessible ICT and purchasing accessible I.T and making um it people aware that when the purchasing something that it's not accessible has procurement been a part of this in any way uh themed up yeah that's that's a very interesting question and as I said you know a lot of organizations will prefer the off-the-shelf model but that tends to have implications not just for accessibility also for customization in terms of what's required by the system another big issue is where is the content going to be stored organizations are limited and when you're starting to acquire thousands of videos all of a sudden you know it's a big cost you might not have the server to host it in-house a lot of the startups and the companies that are working on this type of software are offering hosting privileges as well and they will do it for you but that raises a question as to who owns the content and who can do what with the content and so on and so there isn't a straightforward solution to that and the ones that have been the organizations that have been most successful are making this more accessible and more inclusive have really been working in partnership with technology companies I mean this tends to be larger organizations and sometimes outside of the disability field and Center for American progress has been doing some of this with Salesforce but they you know that can be a model that can be then developed pro bono and applied to other organizations and this is really what's working yeah this is fascinating I'm just thinking from the standpoint of the work that we do around the accessibility profession you know seeing what individuals are growing in those skill set and their knowledge and what a wonderful opportunity we could if we could use this crowdsourcing application to track the profiles of these individuals and where they're going so excellent presentation thank you very much for that so we've got 10 minutes and um we've got some time for some questions but what's before we have closing remarks so I'm going to open it up to the audience please remember to say your name for the captions so anybody have any questions for our panel yes ma'am hi my name is Karine and I'm from Sydney Australia um question for Daniel I was really interested in that survey that you presented on the screen having some familiarity with education in Australia and looking at that I was really curious as to how the teachers submitted that data how they got the teachers to do it because I can tell you in Australia you'd have War um because you know more work more work and that looked like a lot of work is it mandated and who collects the data yeah the teachers collect the data and um yeah it's it's mandated but I think the reason it's working is because there's a response I mean in a lot of countries when they the teachers collect the MS data they say oh this is a lot of work it's a burden but that's because they fill out the forms they send it in the ministry education puts out a little report and they don't see anything happening but this system is designed to try to help them do their work right what do they need to do and they can report what they need and um and then there could be a response to it and I think when the teachers see a response to the information they're giving they're much more willing to to to spend the time to give the information so just curious to follow up on that is that is it you said it was real time in regards to that the teachers are filling this out um so this is something they do daily um for the most part it's when whenever they identify oh this child seems to be having difficulties in the classroom we'll go and fill out that form for they do the the school assessment form is just once a year but the the unless something changes and they go and change it for the children it's as they identify problems they bring them into the system great thank you for that yes Bianca from ING bank I actually have two questions one is about gdpr and data and what I noticed quite a lot there's gdpr is always used as a garden not to collect data about disability I think and and I was curious actually how you think about it and the second question is related to collection of data what I noticed is there's a huge difference in collection of disability data for example in the Netherlands we only have 12 of the population have a disability this is based on how we measure we measure uh I think half of the population we don't measure that's a big difference how can we address this topic from World Bank perspective both Health Organization perspective to get those measurements better because especially for us as business if I look at data return on disability groups data on 1.85 million people with disabilities and how their economic position is based is much more efficient than the World Health Organization data which says 1.3 billion and is researched from 2011.
So it's technically too so I hope you can answer okay let's see who can answer that disability really isn't a binary variable right there's really not there's two types of people in the world people who have disabilities and people who don't have disabilities there's a range of functional difficulties that people have that that then of course interact with the environments they're in right So within a particular country you can have different data sets reporting different prevalence rates and the reporting different prevalence rates because they're using different measures or they're using different cutoffs you know at what level of difficulty that someone has do we want to say that okay now we're going to put them in the person with a disability pot and different data sets have different amounts of resources on a census they're going to fight you for every little question you can probably get on there on a dis and because this because it's expensive on on a special disability survey a whole lot of questions on an administrative form when you're applying for benefits different set of questions so it's never going to be the same across them so what we're trying to to argue for is what we call data harmonization saying that there's a core set of questions a core set of approach of measuring identifying people with disability and data sets that's used in every source so when your Source says it's 15 and the other source says it's three percent we can go and say okay why is there a difference you know what what who are is each group identifying and why and so and then we can use those data sets together so there's a project in South Africa where they're trying to go through all the data that's collected in the Justice Department Education Health everywhere and say okay collect whatever data you need for statutory purposes whatever data you need for the kinds of things you're interested in but let's have that core set of Washington group questions that what they decided to use on all of them so that so so that we unders we reduce the confusion of why people have different numbers and we can still use those data sets together because there's that there's that link there's that commonality which allows the uh to to link them but in the end yeah okay I'll stop I can go off great thank you very much we have a question of you Christine Ryan a question for you around the dartification of stories something I'm really particularly interested in essentially how can we take the wrong Insight or more importantly how can we make sure we take the right Insight from that dartification of stories and the bits that I'm most interested in is any Distortion in story catcher any Distortion in the categorization and the algorithms that then dartify that story or any Distortion in the understanding taken once that has been the the story has been datified based on either bias or error there's so much in the system when we're not putting a purse on the other side this personal era obviously in people but we're used to thinking about that as researchers how do we think about that when we're using technology and tools that can distort deliberately or accidentally um I think thanks that's a great question and you know when we think about stories of disabled people and media representations for example Distortion is always good our mind goes to right so I would say two things one there is you know incredible potential here for reappropriation of the mechanism and the opportunity really for the individual to be at the center of that process but that has to be weighed against all of the other factors factors that you were talking about and so a balance has to be achieved uh particularly with initial submission when it comes to asking some of those questions that I was mentioning earlier on right putting the individual in a position to provide the right amount of information for that story to be classified in a way that really represents what they think and they feel their experience is about and there are different ways of doing that depending on what organization we're talking about here as well and what exactly it focuses on but that really is key in making do decisions and using participatory methods to be able to do that and really knowing your constituency and figuring out what should and should not go in the initial contact form yeah I'll add that it's a bit about that co-design process that we're starting to see is best practice in terms of data collection and Story collection and then how do you use it for a data narrative um I'll use the example of the little lobbyist from the United States since I was deeply involved in that good time but in those stories you are getting a sort of wide swath of a family's interaction with social services and health care in the United States so there certainly were narratives around the issues at hand related to Medicaid in the ACA but there were also very important narratives around special education so then when you look at those stories as data points on a various policy issues you could collect all of them but you could miss the frame of what the points are depending on how you're scoring that data and utilizing it so I think those pieces matter I also am very sensitive to the fact that we need to pay very close attention to the accessibility of both inputting the data but then also translating it so if you're receiving a lot of first-person stories for individuals whose communication styles are different are we prepared to maximize that data are we offering easy read opportunities and then are we translating input from individuals with learning and intellectual disabilities in a written or verbal format that collects their data so it's really this point where we do careful transparent co-creation and some awareness of the risk of Stories being used in the data sort of moving from one political moment to the other thank you so much we are at our time I know there's one more question we have I'm going to ask that person at the end would come up and if the panels would just stay for just a moment that'd be great I just want to take the time to thank our panelists thank zero project for a wonderful conference thanks on topados and the captionist and thank you all it's been great [Applause]