From disability card to disability management information systems for inclusive social protection, care and support (COSP19 Side Event)

Dear colleagues, welcome to this side event from disability car to disability Management Information System for inclusive social protection, care, and support in low income countries.
We are really pleased to welcome you in person as well as online since this event is also webcast live on UN web TV.
I The purpose of this side event is to present the roadmap on administrative identification of persons with disabilities for inclusive social protection, which we have been working for some years now, as well as articulating and presenting some of the country experiences in programs and countries that are trying to build systems that are effective, CRPD compliant, in context that are very resource constrained.
To be with us this session, we should have had our distinguished Minister of social welfare from the Republic of Sierra Leone.
Unfortunately, the last moment, there was an issue preventing this participation.
We will have a opening remark from Astrid Arns with senior policy advisor with the Federal Ministry of Economic Cooperation and Development of Germany.
Following this, we will have a set of presentation, first on the resource that we have been developing, and then we will have presentation from programs taking place in Laos, as well as Sierra Leone.
And we will hear from a diversity of stakeholders which I will present.
We will finish with closing reflection from Ash Kirchner, who is the acting ambassador to the General Assembly at the United Kingdom Mission.
Without any further ado, I will give the floor to As Darns, senior policy advisor with BMZ to open this event.
Thank you very much, Alex, for this kind introduction.
Excellencies, colleagues and friends.
Thank you.
Good afternoon.
Thank you very much also from my side for joining us at today's side event on administrative identification, disability assessment, and certification for inclusive social protection, care and support in low and middle income countries.
A special thanks goes to the government of Sierra Leone, the government of UK and UNICEF for bringing us here together today.
Let me start with a simple truth.
When systems work, people live with greater security and choice.
Our shared task is to move from selective disability cult practices to reliable rights based procedures and to build information systems that open rear doors to support rather than closing them.
To keep this firmly grounded in people's lives, two points should shape our approach.
First, the Convention on the Rights of Persons with Disabilities is clear.
Non discrimination, accessibility, and aggregate standard of living and social protection, participation in community life.
These are binding principles.
Practice must match these principles.
That means nationwide assessments that look at barriers and support needs, not just medical labels.
We have seen progress in several countries, but the shift is still incomplete and uneven.
Second, inclusion needs two tracks.
Persons with disabilities must have equal access to mainstream programs, social assistance, pension, health, education, employment.
At the same time, many need targeted support for extra disability related costs and specific support needs.
This requires consistent identification, fair and transparent assessments, and case management that actually links social protection, care, health, education, and jobs.
The Arman Berlin Declaration reminds us to turn this ambition into concrete action.
Where do we stand today? Many countries have initiated promising reforms, but rules often differ across programs.
Criteria can be unclear.
Data systems are fragmented.
Too many people are missed or dropped along the way.
Persons with disabilities and their families face heavy paperwork and repeated assessments.
As a result, scarce resources are not always used where they matter most.
Our mission is clear.
Build systems that are accessible, reliable, and trustworthy even where resources are constrained.
This means the following use fair rights based assessments.
Co design assessment tools with organization of persons with disabilities, focus on barriers and support needs, not only on diagnosis, make assessment results reusable across programs to avoid duplication and fatigue.
Build simple and accessible digital tools.
Start from proven open source solutions where possible.
Design for accessibility from the outset, connect services across social protection, health, education, employment, and care through secure data exchange.
Get data right and safe, collect only the data needed for planning, budgeting, and monitoring.
Make data also comparable across programs over time.
Above all, protect personal and health information strictly in line with human rights and data protection standards.
Invest also in people, not in practice, people and in practice, set clear, transparent rules, train teams at all levels national, regional and local, provide clear, accessible information for applicants, families, communities so that people know their rights and the procedures they can rely on.
If we treat identification, assessment, certification, and data management as one coherent public service, accessible, inclusive, and secure, then support will reach those who need it and policy will rest on solid evidence.
This is how we give real effect to the Convention on the Rights of Persons with Disabilities, uphold the promise to leave no one behind and strengthen the impact and resilience of social protection over the life course.
Today is about sharing what works and about scaling it up from faster, fairer certification to integrated information systems that truly serve people.
Our goal is clear and urgent, fair decisions, reliable access, and measurable, more inclusive development outcomes for persons with disabilities and their families.
I look very much forward to our discussion today.
Thank you very much.
Thank you very much.
Great.
Thank you very much, Astrid.
So to support countries that are implementing those reforms, some of us have got together, notably UNIC, the London School of Hygiene and Tropical Medicine, Humanity and Inclusion, the Center for Inclusive Policy, with the support of BM Z and GI Z to develop a roadmap.
And the main reason of this effort is the realization that very often countries focus on the tool.
As soon as we talk, I had a conversation this morning with one other country and when we talk about certification, the first question is, what is the tool? What is the classification? Forgetting many times that actually disability certification is an administrative targeting mechanism, and there are many parameters that needs to be taken into consideration.
Um So if we want disability inclusive social protection, as mentioned, we need to go beyond just trying to identify who has a disability.
We'll come back to that.
We need to identify who requires support, what type of support, and at what level.
It needs to be clear also that disability certification is just one part of administrative identification of person with disabilities.
There is a temptation and some confusion in countries to make disability certification the way, the only administrative identification mechanism.
This first is not compliant with the CRPD, and the committee has made repeatedly recommendation saying that, for instance, protection against disability discrimination should not depend on holding a disability certificate.
Um, the discussion around disability classification, certification, identification is primarily a question of policy choice, is not merely a technical conversation.
Um, one of the thing that is really important is that across government system, you have different entry point for administrative identification of persons with disabilities for different purposes.
For instance, in the healthcare system, you will have identification of newborn that may have some birth defect or as they grow, some developmental delays.
In education, you will identify learners that may have functioning difficulties, which will require specific learning support.
Social protection, obviously, will try to support people with higher support needs.
The problem is that all those system do identification, use the word assessment, for instance, but not for the same purpose and not covering exactly the same population.
From a social protection point of view, the key issue is obviously helping person with disability and their families to cope with the direct and indirect cost of disability, those that make them spend more than household without person with disabilities and as well earn less than household with persons with disabilities because there is fewer employment opportunities or because of the opportunity costs related to unpaid care.
Governments are building systems step by step.
Including in low income countries combining different type of cash benefits, in kind benefits, and connection between services.
They have one question, which is, how do we decide who needs what and who should get what? The fundamental question of identifying formally person with disabilities in need of support from disability related program and beyond.
Um, so person with disability face a certain maze, for instance, parents of children with disabilities, where there is different entry point in government and you have to pass through those gates as Astrid was mentioning, and it can be sometime confusing.
The purpose of disability certification mechanism is multiple.
The first one is to formally identify children, working age adults, and older person who may require disability related support.
The second is because of this formal identification, being in position to target and prioritize access to existing benefits.
But also planning, budgeting, the growth of benefits, or the creation of services or benefit that do not exist yet, but for which we have now data, that administrative data that help us say, okay, we have X number of people who may need personal assistance, we have X number of people who may need respite care, et cetera To a certain degree and though we are not seeing that often, those system can also help with referral and case management.
At the core of the roadmap, there is the idea of solving a misunderstanding, which we see in many countries, which is the temptation to think that you will have a database of all people with disabilities.
You have some legislation will require, for instance, the Ministry of social welfare, to create a database of all people with disabilities.
The thing is, There is a vast number of people in society who experience disability because they have some form of functional difficulties, face some level of stigma and discrimination that will never self identify as person with disabilities themselves.
Think of your grandparents or your parents.
Many of them have difficulty to see, difficulty to hear, difficulty to walk, and they don't think of themselves and society does not necessarily think of them as persons with disabilities.
Will they voluntarily apply for a disability certificate? Probably not.
So Additionally, obtaining a disability certificate, even if the system is very accessible, is always an administrative process, which means I need to have the information about it, I need to decide to apply, and we know that this is not always obvious.
There is stigma associated to this process in many contexts, and if the benefit don't seem to me good enough, why would I do this process? Even if I want to apply, I may not be able to because the center where the assessment takes place is too far, because there are too many papers to gather, or because the medical doctors making the assessment is actually not available.
Finally, I need to meet the criteria that are set by regulation.
So We are talking about building administrative targeting mechanisms with all the question that are related to that, our legislation, disability strategy, decentralization, information system, regulatory mechanism frame such machines.
The key question is, how do we use disability assessment not only to deliver a certificate, but to, as mentioned, plan better to refer and offer integrated support to persons with disabilities, not merely setting up an eligibility determination machine.
So when we look at what the CRPD committee says about disability assessment, there is not necessarily a document that has been issued by the committee, but looking at the recommendation to countries, they are repetitive elements, involving organization of persons with disabilities, ensuring that the disability assessment process respect the dignity and privacy of persons with disabilities, eliminating multiple procedures and reducing the burden on the applicants, making disability certification easily accessible and free of charge everywhere in the country.
Making information on disability certification and related benefit accessible and user friendly and ensuring that those mechanisms never restrict rights of persons with disabilities.
It's not because I need a disability certificate if I'm a person with mental health, that should lead me to deprivation of legal capacity or being preventing to access employment in the public sector, for instance.
When it comes to disability assessment itself, there is a very strong emphasis, of course, to shifting to a human rights based approach to disability rather than focusing on medical determination of disability and that assessment should reflect the characteristics, circumstances, and support needs of persons with disabilities.
A very important thing also is that those machinery, tools, and instruments should differentiate between early age childhood, working age.
There are some questions and similarities between working age and old age and different countries will adapt accordingly.
Through the years, we've came to realize that there is an equation that countries are trying to solve.
They need systems that are easily accessible for all We have assessment that are as comprehensive as possible, not just the impairment, but the support needs, the barrier, the restriction of participation and doing all that in ways that are promoting dignity, autonomy, non discrimination, gender equality, accessibility.
But there is one element that the CRPD committee don't necessarily address, which is at the core of concern for governments and OPD alike, trustworthiness, reliability, accountability.
Fraud.
One of the core concerns of government is ensuring that there is no fake, people with disabilities accessing the system.
This is also a big concern for OPDs.
They don't want people without disability getting disability certificate and accessing benefits that are supposed to go for a person with disabilities.
The challenge is that every time you try to solve an issue, I want to make it more accessible.
Let's do community based targeting.
Yeah, but the problem is that the people in the Ministry of Finance might not trust such mechanism.
We will ask accredited doctor in district hospital to do the certificate.
Well, but when you do that, you deprive access to many people in remote areas and you do not have a comprehensive assessment.
We need a comprehensive assessment compatible with the international classification of functioning.
Let's build multidisciplinary team.
That will solve this problem.
The problem is you don't have enough professionals to be able to make an accessible system all over the country.
What countries are trying to do and what the roadmap documents and the work we've been doing is trying to do is help countries solve this equation.
By doing a proper assessment of the different issues, capacities, institutions, and trying to understand what is the best possible model that will provide accessibility, comprehensiveness, and reliability of the system.
The road map document has a significant background in the draft version, which will be revised and streamlined.
The roadmap itself include inception phase that describe the different steps that needs to be taken, what needs to be assessed, what kind of information is required at the beginning to have a broad understanding.
Then there are three tracks.
That are somehow parallel.
The first track on policy and criteria, a second track on mechanism, operation, and piloting, and a third track on disability management information system itself.
I won't go into all the detail, but the policy and criteria is basically, why are we doing a disability certification system? Who is it that we are trying to identify? What are the criteria that we are putting in place? Which benefits should be conditioned by the disability status or not? For instance, assistive technology.
Do we want people to need the certificate to get access to a walker or a wheelchair? Maybe yes, maybe no.
Every time you make a decision to put a benefit under the disability certificate or not, this will have significant impact on who will seek this disability certificate and the type of pressure that it will create for the system.
Having clarity on all those elements will help you define exactly what is the type of machine I need.
Can I ask local level community health worker to be part of the process? What kind of mechanism for reliability and quality insurance will I be putting in place? How much will it cost if there is a mobile team with a motorcycle that goes in different villages, et cetera The Track two is really about Developing the detail of operation and starting to pilot those.
This is something on which we really insist this process takes time.
Armenia, seven years, Georgia, five years and still not finished.
Rwanda, five years.
It takes time because there are so many issues, so many questions that needs to be solved.
You start, you try, you realize things and you change.
That's really one of the core message.
It's very important to do it, but you need to think that you are in for a long reform.
Um, and the last track is basically the management information system.
If we can have this conversation today, if low income countries are in position to develop such system is a lot because of digitization.
We see, for instance, in Cambodia, app based assessment done by local workers have allowed registration of 1.4% of the total population.
This is extremely significant and started during COVID and was done in three years and a half.
This would not be possible without digitization.
The reliability and the oversight that digitization, digital system provide is also a great guarantee for government with regards to the trustworthiness of the system.
Um, so I would like now to share a quick video that was developed by the Digital convergence Initiative team, our colleagues, Anita Mittal and Wonsa Gatt, because one of the key elements of developing disability management information system is interoperability with other systems.
So we will just share this video.
I'll tell you a story about Daniel.
When he received the disability card, he was sent to five different offices to apply for the benefits he was entitled to.
After visiting two of the offices, each asked him to provide proof of his disability.
It had its own application form, eligibility criteria, and database.
And in the end, Daniel still wasn't enrolled in any of the programs.
He fell through the gaps between the systems.
Daniel's story is not exceptional, and this gap has a name.
It's called Data silo, and it affects over 1 billion people worldwide living with disabilities.
I can tell you that data silo is real.
Disability registries sit in one ministry, social protection programs sit in another, healthcare courts in a third.
Each system was built separately, often by different vendors on different platforms with different data definitions.
The result, a person with a disability may be formally registered, but that registration is invisible to the social protection system that could enroll them in a cash transfer, a job training program, or an emergency relief program.
So the data exists, the eligibility exists, but the connection doesn't.
This is precisely what the digital convergence Initiative, the TCR set out to fit.
DC least interoperability standards between disability registries and social protection systems in Jan 25.
Standards.
That sounds technical.
What does it actually mean for someone like Daniel? Think of it as a shared language.
The DCI standards are a universal translator, a set of workflows, data formats, and the APIs that allow systems to talk to each other securely without either system losing ownership of its data.
So Daniel wouldn't have to carry a folder of documents from office to office.
Ideally, never again.
The system verifies his status through interoperability.
And this is working somewhere.
Korea's integrated system automatically flags relevant entitlements across 22 ministries the moment someone registers their disability.
Armenia replaced five sult application processes with a single functional evaluation that triggers support across multiple agencies.
These aren't experiments.
These are countries that made it work.
And the DCA standards mean others don't have to start from scratch.
The standards don't tell you how to build your system, but gives you specifications on how one system can talk to other system.
The standards are open and free and the team is available to help you.
DC is also publishing soon a guidance paper on benefits of linking social protection systems and disability registries.
It includes country case studies, implementation guidance, for governments.
Because the goal isn't a better database.
The goal is that no one nor Daniel falls through the gap between systems again.
I can actually very quickly scan the QR code.
This is the link to the standards.
I think many of us were involved actually in their development.
We are now working with DCI and open EMS, which is a platform working on a management information system for health insurance and social protection.
We are just starting the process to develop DMISls open source so that countries have a base to start and don't have to start the whole process from a management information system from scratch.
But finally, after all this, we are coming to the tool because at the end of the day, you will need a tool, you will need an instrument adapted for children, for working age adults to assess the situation of person with disabilities, their needs, combining impairment, functional difficulties, support needs, et cetera.
One of the challenges that today we have the international Classification and functioning, which is a broad framework.
But if you are a government and you want to know what are the tool that exist out there that I could use or combine to help me build my assessment tool, there is no such document.
So we've asked the London School of Hygiene and Tropical Medicine to basically do a first compoum of such instruments.
I would like to ask Sarah Rotenberg with Assistant Professor at the London School of Hygiene and Tropical Medicine to tell us a little bit more about this compoum.
Sarah.
Great.
Thank you, Alex.
We started with, and this was led by my colleague, professor Isa McTaggert, and what we sought out to do was create a living resource for disability, inclusive social protection.
We wanted something that was both comprehensive, practical, but also evolving.
Next slide.
And so we wanted a tool.
There's no tool to our knowledge that specifically screens for eligibility for social protection, but we wanted something that was aligned with the international classification of functioning and assessed either impairment, functioning, activity limitations, or support needs.
We wanted to include tools in this compendium that could be administered by non specialists without specialized equipment.
We looked at a variety of sources to long list 67 tools, and we included 40 tools that met this criteria.
We then extracted information about them and reviewed them with experts to understand if these were the right tools that we could propose to support in that assessment and identification.
Next slide.
This summary now includes information for each tool.
It will have a bit of a traffic light system to help showcase which tools might work better for specific contexts or specific purposes and provide some detail about it as well, including the evidence for using the tool and how it was validated in practice.
Next slide.
And so this online compendium that we will showcase now has all the tools available as well as a lot of details about them, including this validation exercise, and then any attachments, and it allows you, because it's online to filter out by tool type, target age group, different domains so that people who are designing social protection systems can understand the variety of tools available to them.
Thanks.
Thank you very much, sir.
One of what's really important here is that very often the development of such instrument require contracting consultants.
Each consultant come with their preference.
The type of tools they are used to believe in what we want to do with this compendium is really to level the playing field so that people in ministries have access to this broader information and can put in perspective what is told to them.
Um, we will launch public consultation on June 18th on this roadmap.
You will have access also to the first version of the compendium, and this will be done on social protection.org disability Sp community page, and feedback will be possible until the tenth September 2026.
You will have all summer in the North Hemisphere to actually, comment on the 180 pages of the roadmap.
We've been told that an executive summary would be very nice and some colleagues have been tasked to work on it.
But I think the 180 page reflect also the complexity of the issue.
Talking about roadmap, I would like now to give the floor to Berto Tom Pato, who is the head of Disability Development Division of the Department of Policy for Devotee Disabilities and Older Person from the Ministry of Labor and Social Welfare from the Democratic Republic of Law.
To tell us a little bit more about the master plan of the Lao government to develop the disability management information system, but the floor is used.
Okay.
Thank you, Mr.
Chair.
Good, good afternoon.
Distin Chair, Excellency, college ladies and gentlemen.
It is my great honor to share with you the DMs Ela PDR and how this system will contribute to inclusive social protection, care, and support for persons with disabilities.
Next slide, please.
Disability perception have shift.
Okay.
Just a moment.
According to the law on persons with disability in La Pedia disability categorized into six teeth that's shown on the slide.
A comprehensive information system must be capable of capturing information relating to all disability groups in a standardized and consistent manner.
Next slide, please.
Based on national statistic collection in 2015, Lao PDR had a total population of approximately 6.5 million people.
Among person aged five years and above, approximately 2.8% were identified as person with disability.
Why this statistic have been used? They also reveal important limitation in our Korean disability data collection system.
Next slide, please.
Globally persons with disability are estimate to represent approximately 15 to 16% of the population.
However, in La PDR, the report finger is only 2.8%.
This significant difference raises important questions.
Therefore, improved disability identification and data collection has become a national priorities.
This is one of the key reasons why LAPDR is investing in the development of DMIs.
Next slide, please.
LapidA is currently preparing to establish a national Disability management information system.
The DMS seeks to achieve six keys objectives.
First, establish a standardized and centralized national disability database.
Second, improving disability identification, assessment, certification, and registration.
Third, enhancing equitable access to legal benefits and social protection programs.
Fourth, strengthen evidence based policy making and planning.
Fifth, improving cross sectoral data integration among government institutes.
Sixth, ensuring data security, privacy, and inbilities Next slide, please.
The DMIs involve multiple sectors, the public sector handle policy, ligation, and research.
Or of persons with disability like the Disabled Persons Association, represent the community, the private sector bring business opportunity and investment, and all of this is monitor evolution and support by education and research.
At the center of everything, a person with disability and their family, they gain access to government policies and more importantly, opportunities, conditions, and real choice in their daily lives.
Next slide, please.
This slide presents overall framework of DMS master plan.
Our vision is to establish a national standardized disability management system that provides complete and reliable disability data and supports the provision of in accordance with laws, social protection policies, and national strategies.
The master plan consists of our major components.
Companent one, focus on developing disability identification assessment and needs assessment tools.
Component two, focus on designing, developing, testing, piloting, and scaling of the demised platform.
Component three, focus on disability certification, disability cards, eligibility criteria, and legal benefits.
Component four, focus on long term management, maintenance, and sustainability of the system.
Together, these component view enable our PDR to build a modern and effective disability management system.
Next slide, please.
Input, data collection, co load data from various sources.
For example, using a questionnaire to collect data in the village, collect from hospital service referrals.
This is the fundamental step with reliable data, the rest cannot function.
The DMs begin with data collection to or relieving information about persons with disability.
Process like input, screening, analysis, and certification, data screening and analysis, verify accuracy, remove duplicates, classify disability tips, disability certification, I officer certification based on analysis data.
Once We have the data, we screen and analyze into ensure quality.
The move to official disabilities certification outcome, what the system produces.
Define criteria and condition, create medical functional standards and for disability, issue disability card, a physical digital card, Confirming eligibility, this dialect outcome standardized criteria and a disability card The key to unlocked support impact, legal and other benefits.
Benefits provided under the law include exemption and reduction in transportation, education, and healthcare fees, social relevance for persons with serious disability and support for those unable to care for themselves.
Finally, the impact Again, access to legal right, social scheme, and practical support.
Next slide, please.
The DMS view contains two broad categorize of information.
The first categorized is anonymized standardized data, which provides aggregate information for planning and policy development.
The second category is administrative data relating to individual persons with disabilities.
This may include demographic information, functional limitation, disability assessment, support needs, and services requirement.
Importantly, the DMS is intended to support disability assessment, certification, and individual support planning.
At the same time, strong safeguard will established to ensure privacy, confidentiality, and data protection.
Next slide, please.
Disability and poverty are often close linked.
Persons with disability may face barriers to education, employment, health care, and participation in the society.
This barrier can increase poverty risks while poverty itself can increase vulnerability to disability.
The DMS is therefore an essential component of the social protection system.
By providing accurate information on disability status and support needs, the system can help ensure that as reach the right individual in a fair and eff manner.
Next slide, please.
Person with disability often experience lower income and higher expense compared with person without disabilities.
On the income side, they may face reduced opportunity for education, employment, and economics participation.
Family member who provide care may also reduced earning opportunities.
On the expenditure side, many persons with disability face disability related costs such as assistive device, rehabilitation services, transportation, personal assistant, sign language interpretation, bill materials, and accessible housing adaptation.
As a result, persons with disability face a higher risk of poverty and social exclusion.
The DMS will help identify these needs and support the design of more effective social protection measures.
Effective disability management requires strong coordination mechanisms in La PDR.
This include the National Committee for Persons with Disability, provincial committees, district level committees, and Secretariat of the National Committee.
This structure play important role in promoting disability inclusion, collecting and reporting data, monitoring, implementation, and coordinating activity across sectors.
The DMS view strengthen this coordination mechanism by providing timely, reliable, and accessible information at administrative levels.
Thank you.
Thank you.
Thank you, Mr.
Shea.
Thank you very much, Bo, for this presentation.
Now we will go in Sierra Leone, a country that has advanced from the steps that Mr.
Bo presented in terms of what is the type of system we want and I started to pilot the type of assessment and mechanism that would take place.
The first pilot took place two years ago.
Based on the learning of this pilot, a second pilot was organized supported by the London School of Hygiene and Tropical Medicine.
To hear more about it, I will give the floor to Morgan Banks, with Associate Professor at the London School of Hygiene and Tropical Medicine and Sarah, which I already presented.
Morgan, the floor is yours.
Great.
Thank you, Alex.
Next slide.
We were very pleased to work on this under the auspices of the Program for Evidence to Inform Disability action, which is generously funded by the UK Foreign Commonwealth and Development Office.
But as part of this, what we did is we looked at where Sierra Leone is developing their new disability certification program led by the Ministry of Social Welfare in collaboration with the Ministry of Health and National Commission for Persons with Disabilities.
As well as this pilot phase one, which was supported by UNICEF and other NGOs.
The big question here is about how do you move away from an approach that is really reliant on very expensive and low supply medical professionals to a system that is more community based, but perhaps has some concerns about reliability.
With that, I'll pass it to Morgan.
Great.
Excellent.
Perfect.
The draft protocols in Sierra Leone call for three key steps.
The first step is focused on identification in which community based stakeholders identify people in their communities that they believe to have or are likely to have a disability so that they can be referred for onward assessment.
The second step is the assessment phase in which a non clinical chiefdom assessment team assesses individuals referred by the stakeholders using an assessment tool and provides input on whether they might be eligible for certification as well as information about their support needs.
Then in the draft protocols, the final level is certification, which is done at a higher administrative level based on some of the input in the assessment phase.
Certification determines first off if someone is eligible and then at what level they would be placed with three levels available of increasing support needs.
Next slide.
So through the the Penda project, we worked with key stakeholders to conduct research that can help to tailor this approach as it goes forward.
So Sarah and I will be talking about some different phases of the research conducted.
The first phase was focused on the revision of the assessment tool.
So as Alex mentioned, there was a pilot phase one where an assessment tool was developed with humanity inclusion, as well as many OPDs and other stakeholders within Sierra Leone.
So we were focused through the research element of streamlining that process to understand how different components of the assessment tool could be used to support eventual certification.
So for supporting certification, that involves focus on if a person has a long term impairment that affects their participation, and then information about their level of support needs can inform whether they would eventually be placed in that level one, two, and three.
Then as Alex also mentioned, there are different uses for assessment and it can be used for case management, for planning of services.
Although less a focus of this research, there was many rich data points within the original tool that could be used to support those purposes.
Next slide.
Thanks.
For identification, which was the second phase, to understand how well we can train community based informants to identify people with disabling impairments, we use this approach to really understand if these groups can do it, but also relative to other approaches.
For example, a population survey, which in practice might be quite challenging, but it would provide a comparable result to see how well people are identified in the community.
And so for this, we also looked at who is correctly identified, who is incorrectly identified by this approach, and who perhaps is also missed.
Next slide.
And so what we did is we used 36 community based Key informants in the chiefdom we were working in, which is Paki Masabg and they identified 1,123 people, which is approximately 5% of that population.
They believe that these people had disabilities, including 15% of which were children.
About 75% of these people attended the assessment centers and when on the clinical review, which was used as a way of understanding if they might meet that criteria in a really reliable way, it was found that 72% of these were assessed to have moderate or clinical level impairment.
What we're still looking at and just to emphasize the data collection has ended just two weeks ago, we want to really understand and look into the data to see who the key informants might have missed compared to the population survey and also if there are particular groups that key informants were better or worse at identifying so that this can be reinforced and improved in future exercises.
Next slide.
Now I'll turn to assessment, which was the second step in that pathway.
Here what we did is we compared how well these chiefdom assessment teams and the new tool that was developed, we compared some of those decisions against what the clinical experts found.
I just want to emphasize here, we are not saying that impairment is the be all and end all of assessment.
We want to make that very clear, but just that the placeholder for these determinations is often the presence of a clinical impairment.
It is useful for governments and other stakeholders to understand how some of these less clinical approaches compare to a clinical assessment.
What we will be doing here is looking at with this Chief Tim assessment team and the tool, how is that information used together to understand who is identified correctly and who might be mis correctorly identified.
Next slide, please.
As Sarah mentioned, the data collection is very nearly completed, so this is just very hot off the press and we will have more information to come.
But so far we are seeing that even without going into all the details within the assessment tool, but mostly based on the cat team's initial reflections, they are able to correctly identify about 80% of people who do have a moderate or greater clinical impairment and that percentage rises for people who have a severe impairment.
What we will be doing next is to better understand how we can use and score the assessment tool so that it can better support assessment decisions and what some inclusion exclusion errors might be with different approaches to using the tool.
Next slide, please.
Final component of the research will look at feasibility.
We'll be looking to understand some of the facilitators and some of the challenges with the recommended approach.
What are the resources needed to deliver at scale and their availability.
We will also be looking at what might be some potential numbers of people who are eligible for potential certification with these approaches and also look at some of the costing of rolling out such an approach at scale.
That is all from us, but just to say that more information will be available as we get deep into the analysis.
Thank you very much, Morgan and for this presentation.
I have to say, and we are really happy to collaborate and very thankful also from the support for the CDO.
This is probably one of the most systematic work that has been done on such an issue.
That's important not only for Sierra Leone, but also for the work that is being done now in Zimbabwe, in Zambia and many other countries that are trying to build system that do not primarily rely on medical doctors.
That's really a very important work and we are really looking forward to the results.
One of the key question we receive very often when we talk about the identification disability card is for what? Why do we identify people? The whole discussion on referral, how identification, better administrative identification links to better access to services.
Very often, we use the word case management.
And maybe we use it a little bit too lightly.
We wanted to invite our colleague, Reb Bernard, with the Technical Director for resilience and Inclusion, Humanity and Inclusion, to tell us more about the work that HI has been doing and the thinking on the different level of referral and case management to clarify a little bit.
Ave, the floor is yours.
Thank you, Alex.
To tell you that 20 years ago, we were so happy in this room or just nearby to have a convention and we said, now we have a definition, we know what is disability and we'll be able to identify, determine, certificate, and support person disability.
Ten years after we know that it is complex and we have seen with a different presentation that it's a long journey and a systemic approach that we need to develop and very tailored in each country.
I'm very glad to be part of this very important task force to develop a roadmap.
And to test different tools that can help with support of university, donors, NGOs and international organization, of course, better way to support each country to determine their way to identify and certificate persons with disability.
But of course, our role as an NGO is also to remind that determination is not enough and that we need to go a step further and to go beyond and to challenge the fact that everything is done to support the improving the living condition of people through a case management.
This is A new wording that has been coming in from the social world ten years ago, more or less, but in fact, it's a personalized support is how do we support people in their journey for empowerment.
That's the main goal to be sure that at the end by identifying and knowing where they are, who they are, we are able to propose as a state, as policy, as civil society, some support for all these people and families.
So Um, I wanted to highlight that this screening, this DBT certification is part of a journey in case management.
Of course, it can lead to different kind of referral.
Some people don't need referral at all, some people will need some provision of information and they will do it by themselves and they will manage to navigate in the system.
Of course, many of them will need some facilitation and assistance in this referral and some strong coordination.
And on top of that, on top of this referral, which is very often the case, what we do in humanitarian context when we have to go quick and we have to find some solution for the people with the actors that exist in the humanitarian setting, we try to move to a full case management where we have the opportunity to do a better assessment of the person and the situation of the family, where we can really personalize the situation and see what is all the element of the history of the person.
And try to implement, monitor and ideally to close this support at one moment when we consider that the empowerment has been strong enough thanks mainly to counseling and psychological support, which is definitely a key resources and key expertise you need when you want to do case management.
So this is just to give you a broad picture of where all these important tool of determination should fit within a full case management aspect.
In this slide, I wanted to highlight the fact that of course, it depends how many people you want to impact and about your resources, when you are a state, when you are a province or a district, you have to make difficult choice.
Of course, if you want to reach to the full case management on top of the pyramid, you will have to develop more support and more specialized staff, more counseling, more investment in general, and you will have to be ready to target people with more severe and higher needs.
Of course, if you stay at the lowest part of the pyramid because you have less resources, you know that you will have to renounce some of these important impact.
It's a key decision and it's a very important element to have a vision and to see, okay, what can I do in terms of case management in my country and in my specific administration? And depending also of the social workers force that you can work with.
We have worked in three different countries and I wanted to highlight quickly through experience that we have launched regarding case management in the past.
For example, we supported in Mozambique, the social workforce and the social welfare ministry to develop the skills of social workers to get to cross check data and submit better application to the National Social Protection Program.
And based on that, people will have access to cash or in kind support.
That was really the main target to identify people who are eligible to these different resources.
But of course, we started working on case management process to see if we can go further and support people in their journey.
It has been quite complex to move out of the four provinces that we tested and to really manage to replicate this experience elsewhere because for the country, it represents a high investment and so we had to stick to these four provinces so far.
Of course, it's a hybrid system that we rely a lot on NGOs, CSO, and community to deliver in this very specific countries, if you know Mozambique, were very remote places where the state is very far in terms of services.
Define community is a key element that we have learned in this case management example.
Another example is Tunisia, completely different with a strong state a small country, of course, where we try to support in fight at state level to work on the training of social workers, the skill, the competencies of social worker to be sure that they have the right way to do case management and the right empathy when they go and talk with person DBT and their families.
We face also some difficulties because of the bureaucracy and the difficulty for states to really monitor this case management services.
That's why for the moment, we don't call it really replication of case management, but more a coordinated referral with follow up.
Sometimes you have also to renounce and go step by step and not too fast to respect also the capacity of the country to move into this case management processes.
In Madagascar, in the Zaira program, we supported with UNICEF and EU.
We try also to develop some initiative to enable some targeted household in source of the country and to improve their living condition.
So we develop a good case management system with a lot of CSO NGO community actors present in the source of Madagascar, but we face a very strong difficulty, which is the lack of services, the lack of a ally that you can find in the area where you need to refer people and it's a question that we often have, what can I do if I have nowhere and nobody to refer to? That's something very interesting because at the end, we came to this conclusion that when you are working in case management, you have also to be ready not to provide some very specific cash or in kind support, but more to focus on the fact that you recognize the people, you identify them, and you empower them by giving them a reality and giving them their rights.
So a very quick things I wanted to share with you that of course, you have to decide as a state whether you go into more mainstream approach or more specific.
We mentioned the win track approach just before, and that's also a reality.
There's no good or bad solution, but you have to know that if you go to a more mainstream solution, which is the case sometime, the case management on the right side, you can see the case management exist and then the DVT assessment and certification is a separate process and you try to make connection between the two processes.
Sometime you will go on the left side of the screen on only one specific system specific for personT and you will assess and propose case management.
Both experience are interesting.
They have pros and cons and it's interesting to support state to take the right decision and to move, of course, to a mainstream solution that is the ideal goal, but we know you have to go step by step.
Of course, we wanted to insist that you need to work with at least three important system that exists, the public institution, what the NGO and CSO Organization of Personal Dbity can propose, but also the sectorial base.
We mentioned education, health, and employment as a key sectors that can also provide a lot of data.
It's an important aspect, this coordination between all these sectors.
Yes, it's already come to the end so you can skip this one, and then we can go to the key messages I wanted to give you.
Do no harm.
It's very important that when you set up such a system, you know well the different services that exist and you know that they can provide the right service to the people and they are organized to do that.
You need to rely on social service worker with the right skills and competencies to really welcome the speech of the people.
Case management should be personalized and at least provide the counseling, the psychological support that people need on top of all the other support that they can receive.
You need to have, if possible, to prioritize little by little to people with higher support needs to be sure that you don't go the easy way, but try also to reach all person with Dabity in your community.
Thank you.
Thank you very much, Herve, for those elements.
We are a little bit tight in time.
I just would like Daniel Mound, the CEO of Center for Inclusive Policy, can you tell us very briefly some of the key issues when we try to connect data between systems? The issue of disability data or, you are one of the few that have been working on it.
Data as people have been saying, is collected from many places, for many different purposes.
When we did a study in South Africa, we saw disability data being collected not only from social welfare and health and education, but also from transportation, housing, justice in the police department, all these different data.
For different reasons.
It's not just administrative data, it's statistical data like surveys and censuses because it's that data which governments use for planning and projecting and even more importantly, that's the data that shows who's not in the system because this admin data tells us nothing about the people who are not accessing the system.
The problem with collecting all these data from all these sources, if it's not harmonized and coordinated is number one, it creates a lot of confusion when they don't seem to align with each other and people say, How do we know what's going on? Second, it's a missed opportunity.
It's a missed opportunity to coordinate these data, to be able to leverage them and make them powerful together.
And there's two important ways of trying to do that.
The first is what we call harmonization and that means that all these different data sources have a core set that's the same questions.
It doesn't mean that every data source is collecting exactly the same information.
There are statutory and programmatic reasons why different programs have to collect different kinds of data.
But if there is that core set of data which is common, then we have a bridge between all these datasets and we can use them together.
The second is, as people have been saying is interoperability of these systems.
I'll stop there because people have talked about that.
And just to give you a couple little examples, in Armenia, they connected the ES, the education management information systems to the social welfare system data, two administrative data systems that are connected.
They can tell for every kid who is getting disability benefits from their administrative data, they can see if they're in school or not.
They can see what's happening to them in school or not.
Normally, we say, Oh, we need a whole big survey, we 10,000 households in order to do this, but they don't need to do that.
They can do it in real time on a semester by semester basis.
Now, another example, because I'm trying to be quick is Belize The Les adopted the CFM TV, the child functioning module teacher version as part of their ES.
It's the same approach that's connected to the statistical data on the CFM that UNICEF has been recommending in multiple indicator cluster survey.
They're connecting their administrative data approach to the statistical data approach, and they're also working on developing an app that can be used by multiple ministries.
They have health workers, social workers, and education workers who visit different households in the community.
And if they all have the same app with the same data system, identifying children who are they are servicing or children who they see are not being serviced, their hope is they don't have the system now.
Their hope is coordinated through their ministry of egvernance centrally located within the government as a way of taking all these data from all these different ministries, connecting them together.
When we connect that data together, it becomes all that more powerful.
I'm finished.
Thank you, Daniel for being extremely prompt and strict on time.
As you've seen, this is a vast and complex set of issues.
We are starting a new journey, I think from this roadmap and this public consultation.
We are really looking forward to receiving your feedback.
We will organize several webinars.
There will be many opportunities to engage.
We already talked with the International Disability Alliance to have specific discussion with different members, with specific issues.
We are really welcoming all of you in this conversation.
To close this event, I would like to invite Ash Kirchner, the acting ambassador of the General Assembly at the United Kingdom Mission, to give the closing reflections.
Fantastic.
Thank you so much.
Distinguished Excellencies, ladies and gentlemen.
It's been a real pleasure to join you here for what has been an important and thought provoking event.
Let me first start by thanking our session hosts and contributors from UNICEF, the London School of Hygiene and Tropical Medicine, the Ministry of Labor and Social Welfare of La PDR, the Sierra Leone Ministry of Social Welfare, Center for Inclusive Policy, Humanity and Inclusion, and the Digital Convergence Initiative.
This has been a really engaging panel discussion sharing such practical examples.
As we draw this session to a close, it's worth pausing to reflect on why this topic matters so much.
As the distinguished delegate from Lao PDR remarked, around one in six people globally live with a disability.
But as Astrid said at the outset, these data systems remain fragmented and scarce resources are rarely available where needed.
The FCDO has worked to be at the forefront of disability inclusion, including co hosting the first global disability summit in 2018.
At this time, we launched our disability inclusive development program, supporting interventions grounded in rigorous evidence of what works to improve well being and inclusion.
A key part of this is the program for Evidence to inform Disability action Pender led by the London School of Hygiene and Tropical Medicine, as we've heard today.
I was delighted that doctor Morgan Banks and doctor Sarah Rothenberg have discussed the findings of this critical work at today's event.
Where I found particularly the data to be very compelling.
As was clear from the presentation, PNA is helping to address a key gap, the lack of robust evidence from disability in low and middle income countries.
When we ask why social protection matters, we can look to findings as a result of support from the disability inclusive Development Program, particularly the poverty graduation approach in Uganda.
As many of you will know, the ultra poverty graduation programs have been running in over ten countries since 2002, supporting those in extreme poverty with integrated social, economic, and health interventions.
From what we understand that the results in Uganda were really encouraging.
Participants saw increases in income, consumption, and savings alongside improved access to healthcare and fewer unmet needs.
Outcomes were particularly strong in households led by women with disabilities.
There were also improvements in social participation, although sustaining these gains will require long term investments.
This work is now being built on, including efforts to adapt the approach in Bangladesh with potential for wider scale up.
Turning to the broader issue of additional costs faced by people with disabilities.
While targeted interventions are vital, disability continues to impose significant financial burdens as noted by several of the panelists today.
Penda working with UNICEF is helping to better understand these.
As we've heard this afternoon, people with disabilities and their families often spend a substantial share of their income on additional costs, whether they be personal assistance, assisted devices, healthcare and transport.
These out of pocket expenses can significantly reduce living standards.
So therefore, understanding these costs is essential.
It shapes how we define poverty, how we target support, and how we avoid reinforcing these inequities.
Yet we still lack inconsistent approaches to measuring these costs.
That is why today's emphasis on data and the roadmap presented is so important.
If we're serious about progress, to our mind, we must work with people with disabilities to design systems that meet real needs, routinely identify disability in ways that inform services, and finally, we must make smarter use of data because collecting data without using it does not lead to changes.
Achieving all of this will require resources, but also strong leadership and sustained advocacy.
The UK remains committed to being a partner and an ally, sharing evidence, supporting innovation, and advancing disability inclusion for a fair world for all.
Finally, thank you once again to our distinguished panel and for the valuable perspectives from the Lao PDR and Sierra Leone.
The roadmap you presented is a vital tool.
It shows what is possible and where we all need to go and how we can get there together.
Thank you very much.
Thank you very much.
And with that, we close this event and we are looking forward to continue this conversation with you remotely on webinar and welcoming your feedback on the 180 page document.
Thank you very much.
Thank you.
Thank you.
Thank you.
It's really interesting.