Presentation by Ms. Anna Nordenmark Severinsson, Programme Specialist, Child Protection, UNICEF Regional Office for CEE/CIS
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Setting the scene: Situation of children with disabilities in Central Asia – Rights and Realities From 4th Child Protection Forum in Tajikistan, 2013.
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Presentation by Ms. Anna Nordenmark Severinsson, Programme Specialist, Child Protection, UNICEF Regional Office for CEE/CIS
- 1. 1 SITUATION OF CHILDREN WITH DISABILITIES IN CENTRAL ASIA: RIGHTS AND REALITIES
- 2. No increase in the number of children registered with disabilities 0 20000 40000 60000 80000 100000 120000 140000 2005 2010 2012 2005 2010 2012 2000 2005 2010 2012 2000 2005 2005 2010 2012 Kazakhstan Kyrgystan Tajikistan Turkmenistan Uzbekistan Total number of children with disabilities below 18 years registered in the country
- 3. Many children with disabilities may be un-counted for and are therefore invisible in policy making 0.9% 2.7% 4.8% 21% 31% Central Asia: prevalence (%) of children with disability 0-18 years based on administrative records Bhutan: prevalence (%) of children with disability 2-9 years based on MICS+screening tools FYR Macedonia: prevalence (%) of children with disability 2-9 years based on MICS+screening tools Comparison of disability prevalence Moderate/Severe All combined (incl. light)
- 4. Definitions, stipulated rights and provisions for children with disabilities in Central Asia • All countries in CA have specific laws that stipulate rights and provisions o Definitions vary, only one country seems to have changed language to be more in line with international standards • All countries have had changes in these provisions in last 5 years o Health services o Education o Social protection services (mainly residential care) and schemes (benefits, taxbreaks, free aid/supports)
- 5. Changes in health services for children with disabilities Observed trends: • Prevention • Modernization • Strengthened identification • Strengthing and development of special protocols and system depending on age • Introduction of new services in several countries (e.g. rehabilitation) Remaining issues: • Equitable geographic availability? • Outreach/access? • Integration?
- 6. Changes in education services for children with disabilities Observed trends: • Increases in pre-school services for children with disabilities • No changes in use of special pre-schools for children with disabilities • Efforts to provide children with disabilities with education • De-institutionlization in education? Remaining issues: • Inclusion ? • Quality?
- 7. Pre-school education for children with disabilities 40% 40% 40% 40% 48% 40% 42% 0 5000 10000 15000 20000 25000 2000 2005 2010 2012 2005 2010 2012 2005 2010 2012 2000 2005 2010 2012 Kazakhstan Kyrgyzstan Turkmenistan Uzbekistan No of children with disabilities in regular pre-school facilities No of children with disabilities in special pre-school facilities Proportion of children with disabilities receiving pre-school education services in different settings – changes over time
- 8. Where do children with disabilities get education? 6% 18% 23% 74% 61% 27% 7% 13% 26% 34% 66% 74% 65% 5% 0 5000 10000 15000 20000 25000 30000 35000 Kazakhstan Kyrgyzstan Taijikistan Turkmenistan Uzbekistan No of children with disabilities receiving education in regular schools No of children with disabilities receiving education through home-schooling No of children with disabilities receiving education in boarding schools for special education Proportion of children with disabilities receiving education services in different settings
- 9. Education trend: Integration or separation? 55% 74% 4% 6% 5% 0 5000 10000 15000 20000 25000 30000 35000 2005 2012 2000 2005 2012 Kyrgyzstan Uzbekistan No of children with disabilities receiving education in regular schools No of children with disabilities receiving education through home-schooling No of children with disabilities receiving education in boarding schools for special education Proportion of children with disabilities receiving education services in different settings – changes over time in two countries
- 10. Changes in social protection and community based social services Observed trends • Range of social protection schemes, several countries report increases • New community based social services for family and child support emerging (such as day care, rehabilitation) Remaining issues: • Slow uptake of community based social services • Limited outreach and no monitoring of equitable distribution • Barriers to access
- 11. A range of social assistance schemes 98555 113316 22359 25346 26345 7248 10100 10945 120138 96177 78910 0 20000 40000 60000 80000 100000 120000 140000 2010 2012 2010 2012 2012 2005 2010 2012 2005 2010 2012 Kazakhstan Kyrgystan Tajikistan Turkmenistan Uzbekistan Number of Beneficiaries of Disability Allowance/Carer Allowance over several years Total number of families receiving “care allowance” for child with disability Total number of children and/or families with children with disabilities receiving “disability allowance"
- 12. Social protection services – still mainly relying on residential care 0 5000 10000 15000 20000 25000 30000 35000 201220122011*20122011* KazakhstanKyrgystanTajikistanTurkmenistanUzbekistan 60% 68% 69% 13% 41% 40%32%31% 87% 59% Total number of children below 18 years in residential care Total number of children with disabilities below 18 years in residential care Proportion of children with disabilities in residential care
- 13. Most children with disabilities in residential care are in pre-school age or school age 0 5000 10000 15000 20000 25000 201220122011*20122011* KazakhstanKyrgystanTajikistanTurkmenistanUzbekistan 98.6% 99.5% 99.5% 100% 99.3% 1.4%0.5%0.5%0%.7% Total number of children with disabilities below 18 years in residential care Total number of children with disabilites below 3 years in residential care Proportion of children with disabilities below 3 yrs of all children with disabilities in residential care
- 14. Rights and realities Reality: - Number of children with disabilities are still invisible in statistics and therefore not taken into account in policy - Available state funding goes to social protection and welfare, education and health for children with disabilities Rights: - Large proportions of children with disabilities (those we know of) are still not allowed to grow up in a family, included in communities, learn in education with peers who are without disability - For rights to be fulfilled, need to shift focus from provisions to outcomes. - This requires a re-allocation of existing resources
- 15. This Forum Plenary 2: Children with disabilities: Rights and best interests Plenary 4: Right to health and to habilitation and rehabilitation Plenary 5: Freedom from exploitation, violence and abuse Plenary 6: Right to education Plenary 7: Respect for the family and right to be included in community Plenary 3: Taking stock and identifying priorities
Editor's Notes
- Since the 1990, many states in the larger CEE/CIS region have registered dramatic changes in the recorded number of children with disabilities. The total number of children recognized as disabled in official data across the CEE/CIS region tripled, from around 500,000 at the onset of transition to 1.5 million in 2002 in 27 countries (Innocenti Insight: Children and Disability in Transition in CEE/CIS and Baltic States, UNICEF IRC, 2005). This is most likely because there was an under-registration of children with disabilities before.For this reason, we are interested to know if there has been any increase in the number of registered children with disabilities in Central Asia:If we would make an average for the four countries in Central Asia where data is available for a sufficient time-range, this shows that there is no increase at all in the number of registered children with disabilities between 2005 and 2012. However, if we look at the breakdown between countries the situation differs of course. Three countries have seen an increase even if that increase for individual countries is far from at the same level as the increase in CEE/CIS.While the increasethat has happened in the wider CEE/CIS can show an increasing uptake of different services and benefits for children with disability (because often registration of disability is linked with claims to different forms of benefits and services), this same situation has not yet happened in Central Asia. We are of course also interested to know how many children with disabilities there are in the countries, because this is the basis for development of appropriate polities and services for children with disabilities:According to government’s administrative data there are around 200,000 registered children with disabilities in Central Asia today. The registered number of children with disability does not necessarily provide an accurate picture of the prevalence of disability in these countries.
- A single universal benchmark for estimating prevalence of disability among children does not exist. In Central Asia, as for other countries globally, the prevalence estimates depend on the tools used for assessing disability. In the case of Central Asia, it is actually very difficult to have clear picture of the “real” disability prevalence because the data that is being collected is done so with a very specific purpose in mind. As we will see in the country profiles, very often the “registered number of children with disability” end up being the same, as the number of children being provided with a disability benefit.Withthis in mind, itis a relevant question to ask how many more childrenwithdisabilitiesthere are, but whomight for example not bebeneficiaries of the disabilitybenefit. This is relevant becausea society cannotbeequitableunless all children are included, and childrenwithdisabilitiescannotbeincludedunlesssound data collection and analysisrenderthem visible.For the sake of comparison, we have included in this graph twoother countries outside of Central Asiathat have recentlycarried out more neutral data collection on childrenwithdisabilities. This data wascollected in householdsurveys and complementedwithadditional screening tools. Parents wereasked to self identify if therewas a childwith a disability in the household, and thereafter, if thatwas the case, the childwasassessed in a thoughway. The advantage of suchadditional data collection isthat, unlike records over childrenwithdisabilitzwhoreceive a benefit, itdoes not have a specificpurpose of definingeligibility for services or benefits.As you will see from the graph, in Central Asia the registered number of children with disabilities in Central Asia represents less than 1% of the overall child population. In Bhutan, the disability prevalence estimate rate among children 2-9 years ended up at 2.7% for moderate and severe disabilities and 21% if including any kind of disability (also lighter forms). In FYR Macedonia, it was at a level of approx. 4.8% for moderate and severe disabilities and 31% for all forms, including lighter disabilities.This is shown only to make the point that in Central Asia, since there is to date no “neutral” method and tools for estimating disability prevalence – it is un-known how many children with disabilities there actually are in this region.This is a challenge for developingequitablepolicies, that are also inclusive of the needs of childrenwithdisabilities.(One final point to be made hereisthat official data available in these countries on children with disabilities define the age of those children as 0-16, whereas majority of key national laws on children’s rights define child as a person of 0-18 years of old. Generally, a big group of children (age 16-18) in the countries of CA is not being reported as children with disabilities. )
- A very strong feature in the five Central Asian countries, is the fact that all countries define, and stipulate rights and provisions for children with disabilities through a wide spectrum of laws that are relevant for realizing the rights of children with disabilities. Definitions of disabilityvary and veryoften uses languagewhichisportrayingchildrenwithdisabilities in a waythatperpetuates the stigma thatisoftenassociatedwithdisability in the region. There is one country that has made attempts in the child code to change language (Kyrgyzrepublic) to be more in line with international standards.All five countries have introduced changes in the provisions and rights of childrenwithdisabilities in the last five years and thisisveryencouraging.Provisions are being made by law and in practice for a wide range of health services, education and social protection /social security services. In the coming slides we will look at what these changes are and what are the trends in policy orientation and provisions being made for children with disabilities.But as we all know, provisions are not the same as rights being fulfilled, so at the end I will try to summarize also on this point. But of course, this is only based on the data we have available and it would be very useful to do a more thorough situation analysis on the outcomes of different provisions that are being made for children with disabilities in this region.
- Early identification of disability allows for provision of proper care and support both for the child and for the parents. The health system, being the first one to come into contact with parents to be, and children with disabilities plays an important role in that regard. Judging from the information provided by countries, it seems that some work is taking place towards:There seems to be greater focus on prevention. All countries report on protocols for pre-natal check-ups, changes in advice and provision of anti-anaemic drugs and folic acid. (KYRA; KAZA; TADA, TUKA, UZBA)Modernization - several of the countries are reporting that they are introducing new technologies for pre-natal check-ups of the mother and baby, even if it is not sure to what extent this is also available to the same extent in rural areas as in urban areasStrengthened identification (and improvements in screening tools and standards) at the level of health care organizations (KYRA; KAZA; TADA, TUKA) for children below 5 years, and this is possibly the reason for why at least three of the countries see an increase in the number of registered children with disabilities.All countries also seem to have special protocols and systems for screening and assessing children depending on the age of the child in all countries (x number of visits in the first year, second year, etc.). Introducing new health services (such as rehabilitation), which did not exist before (KAZA, KYRA, TADA, UZBA)Remaining issues for consideration include:- Equitable geographical availability? From other studies we know that innovations in services, modernized practices etc. first reaches urban centers. There is a need to ensure equitable access to these services regardless of where people live( urban rural, mountainous area/plain)- Outreach / access – Just because services are available does not mean they are necessarily accessible. To what extent are these services, specially the new community based services, reaching out to populations. Parents to children with disabilities might have the most difficulties to access these (only two countries there are home visiting system (TADA; TUKA)- Integrated policies and services: Only two countries also report on specific efforts to integrate services and activities of social protection, health and education (KAZA and TADA) and one country (TUKA) integration between education and health services
- Giving children access to early education through pre-school education is an important strategy both to identify and support children with disabilities, to prepare children in general, and children with disabilities in particular, for primary school. For parents, having access to this early pedagogical support, it can also be an important family support.Overall, as I will also show in the coming slides, we see the following possible trends:Increases in the number of childrenwithdisabilities in pre-school servicesNo changes in use of specialpre-schools for childrenwithdisabilitiesEfforts to providechildrenwithdisabilitieswitheducationDe-institutionlization?Remaining issues to befurtehrinvestigated and addressedinclude for example:Inclusion – to whatextent are childrenwithdisabilitiesprovidedwith the sameopportunities as childrenwithoutdisabilities to develop and thrive if they are not given an opportunity to beincludedintoregular services and activities, possiblywithsomeadditional support?To whatextent are childrenwithdisabilitybeingprovidedwith the samequality of services as childrenwithoutdisability?I willelaborate on this in the comingslides
- What we are interested is to know if children with disabilities in the region get access to any kind of pre-school education? If that is being increasingly prioritized? Four countries (Kazakhstan,Kyrgyzstan,Turkmenistan and Uzbekistan) provide data on children with disabilities in pre-school and two of these countries (Kazakhstan,Kyrgyzstan) also share information whether or not the children with disabilities who are in pre-school education receive this is special pre-school facilities or in regular pre-school facilities. For the other two countries it is not clear whether any children at all get pre-school education in regular pre-schools or if the arrangement is exclusively tp provide pre-school services in special pre-schools.Although it is difficult to see from this graph, because the numbers for one of the countries is so small, all four countries show and increasing trend in the number of children with disabilities that are benefiting from pre-school since 2005.It is important to also know how and where children are provided with this support - in residential care, or in regular pre-schools where children can go without necessarily being separated from their families in the weeks or for longer periods of time.In two of the countries, where disaggregated data has been provided, (Kazakhstan and Kyrgyzstan), a larger proportion of children with disabilities are receiving pre-school education in regular pre-school facilities rather than special pre-school facilities (which can often also have a residential element as far as we know).What one would have to find out more about is what kind of pedagogical and other support these children get there and we did not have access to that information.For the remaining countries the picture is not fully clear on whether CWD exclusively get access to pre-school education in special residential pre-schools.
- In terms of education – we are interested to know if children with disabilities get quality education, where that is:in regular schools with supportin special boarding schools where they also stay over night, orthrough home-schooling, where the children might be able to still stay in the family, but are still not given a chance to be integrated in the community.In this graph we can see:A preference for giving children with disabilities access to education in regular schools in three countries. It is unclear, but likely that this concerns children with what is considered as having “lighter disabilities”. It is also unclear to what extent children with disabilities would get any extra support if there was a needIn two countries a strong preference for special boarding schoolsAnd in three countries there is an important share of children with disabilities are provided education through home-schoolingData is from 2012 for all the countries
- This slide gives an idea of what has been happening over a period of time, are children becoming increasingly included in regular schools, or are they still provided education is separate settings?Important to note that for both these countries where we have data, decreases in the use of special boarding schools seem to be accompanied by parallel increases in home-schooling. Hence reforms in provision of education to children with disabilities which are leading to a “de-institutionalization”, has not necessarily lead to more inclusion for these children.
- One of the strongfeatures of Central Asiaisthatevery country has a range of social protection measures in place for childrenwithdisabilities and theirfamilies.There isonly one country (Kazakhstan) that has continued the allowance for family support afterindependence (weunderstandthatKyrgyzstanisre-introducingit), while all other countries have discontinuedthis support. However, all countries have a disabilityallowance / or pension thatcanbereceivedafter a disability has been assessed and a certificateissued.Otherthanthis, all countries (in differentcombinations) have a variety of other social protection measures, such as exemption of tax for familymembers and the personwithdisabilityhim or helself, compensation on use of gas and electricity, free medicaltreatment and aid, entitlements to housing etc.Several countries also report increases in the sizes of differentbenefits. But stillThe size of benefits and supports of course varies a lot and itwouldbe important to assess, as a package whatcanbe the outcomes of childrenwithdisabilities and theirfamilies. From other studies and evaluations we know that new social services for family and child support are emerging in all the countries. New emerging services include for example day care, rehabilitation services and different forms of therapy. Remaining issues:But we know that for CEE/CIS as a whole, these services have a slow uptake because large amount of state funding might still be locked into residential care and in the absence of mechanisms for reallocation of these resources to other community based services, the new services unfortunately remain often on a smaller scale and often with inequitable distribution in countries.Important indicator to measure improvements could be the no. of regions with a full package of community based social services, however, this data is not available today.For children with disabilities and their families the importance of having services available in the communities might be even more urgent than for other people, simply because travel is more complicated and if services such as rehabilitation is only available in combination with residential care, this often leaves families without choice but to accept services for children with disabilities to be provided combined with a residential care element.. Other studies also testify about important barriers to access to social protection schemes (lots of documents to gather, complicated application procedures, discriminatory attitudes etc.)
- This slide shows trends in the number of beneficiaries of disabilityallowance and carerallowance in the 5 countries:In three countries have seen a steadyincrease in the beneficiaries (possiblylinked to increase in registration of disability) the last few years. This includes:KazakhstanKyrgyzstanTurkmenistan (2000-2005)(Uzbekistan has seen a decrease, and Tajikistanonly has data for 2012)Usually children with disabilities who are in residential care, would not be entitled to receiving a disability benefit, or family a carer allowance.
- Social protection services are still dominated by residential careApprox. 38,000 children with disabilitiesare placed in residential care in Central Asia – this represents 46% of all children in residential care in the countries of Central Asia.The share of children with disabilities of all children in residential care is the highest in the following order, Turkmenistan (87%), Uzbekistan (59%), Kazakhstan (40%), Kyrgyzstan (32%) and Tajikistan (31%)
- Understandingatwhatagechildren enter residential care is important as itcanindicate the type of services whichmightbelacking in the community.In thisslide, weseethatverysmallchildrenwithdisabilities, belowage of 3 years, represents averysmall proportion of all the childrenwithdisabilities in residential care, and this situation isverysimilar in all the 5 countries.Even if this data of course wouldneed to becomplementedwith more information on each of the cases, wecantentativelyconcludethatmostchildrenwithdisabilitiesmay enter residential care later, at the age of 4 and abovewhenthey enter pre-schoolage or schoolagesimplybecausethereis no communitybased alternative to educationavailable.So the opportunitywemay have at hand isthatthereis a veryspecificpolicyresponseneeded in the area of education, whichwouldsignificantly help to re-integratechildrenwithdisabilities in theircommunities.
- In summarizing the above, I wouldlike to say the following:In no country contextisrightssynonymouswithrealities. There is a need to constantlyreview and reflect on whatis the effect of policies and services provisions on the persons public politiesintends to reach. Havingaccess to a variety of sources of information for suchanalysisisvery important. A challengewe have ahead of us that for the moment, we do not have many sources of information.Reality: Sincethere are no neutralways / methods of estimatingdisabilityprevalence and the data available on the number of childrenwithdisabilities in the 5 countries isbased on differentMinistry records only,itisverylikelythat a large number of childrenwithdisabilities are still invisible in statistics. This limits the opportunities to develop inclusive policies for all as thereis no reliant statistics to startwith. States in Central Asia do invest public funds to social protection and welfare, education and health for childrenwithdisabilities. This isvery positive, since in many countries in the world thismight not be the case. Rights: Large proportions of childrenwithdisabilities (thosewe know of) are still not allowed to grow up in a family, included in communities, learn in educationwithpeerswho are withoutdisabilityFor rights to befulfilled, need to shift focus from provisions to outcomes.The Convention on the Rights of Persons with Disabilities provides and the Convention on the Rights of the Child provides the standands for what such outcomes should be. We need to ask if benefits paid and services provided lead to:Inclusion and best interests of the individual (is it possible for example to respect each individuals needs and rights when services and provisions are for categories of individuals?)Right to health, habilitation and rehabilitationFreedom from violence, exploitation and abuseRight to education (quality and learning)Respect for the family and right to be included in the community?Are the provisions in place enough or what additional social inclusion measures , if not reforms are needed to ensure these outcomes for children with disabilities.
- To finish, in this slide you see the concept for the agenda.It follows more or less the issues that have been introduced in this presentation. In these different sessions, there will be a mix of expert presentations and country examples – there are some guest countries that have advanced a lot in this area in recent years that will share their experiences with us –will give a flavour of what is needed in terms of new services, new approaches, new skills to realize the rights of children with disabilities.As it has already been stressed by previous speakers, we are only addressing some of the rights of the CRPD in this Forum, even if all the rights in the CRPD should be seen as mutually reinforcing each other.But we think that the work needs to start somewhere and we believe and hope that children with disabilities will be at the forefront of the change that is taking place.