Thank you! Jan jan.siska@pedf.cuni.cz

1. Thank you! Jan jan.siska@pedf.cuni.cz assoc. prof. Jan Šiška, PhD. 2013

2. Children’s Rights for All! Implementationofthe UNConvention on the Rights of the Child for Children with Intellectual Disabilities Assoc. Prof. Jan Šiška, PhD. 2013

3. Project Children’s Rightsfor All: Rationale • There are around one million children with intellectual disabilities throughout the European Union • These children are often subject to discriminationand exclusion from society, and are frequently denied the right to good quality education, healthcare, recreation and services • Their families are also often subject to discriminationand are denied access to adequate financial andemotional support. • InclusionEurope Project proposal (2009) assoc. prof. Jan Šiška, PhD. 2013

4. Project Children’s RightsforAll Overall objective To analyze through research conducted across the EU Member States the implementation of the UNConvention on the Rights of the Child(CRC) from the perspective of children with intellectual disabilities. FromDecember 2009 to November2011. assoc. prof. Jan Šiška, PhD. 2013

5. Project Children’s Rightsfor All: Expected outcomes To empower children and disability NGO’s tolobby for higher impact of the CRC for children with intellectual disabilities and better combat all forms of violence and discrimination against this group of children. assoc. prof. Jan Šiška, PhD. 2013

6. Project Children’s Rightsfor All: National Experts National Experts in 22 countries: assoc. prof. Jan Šiška, PhD. 2013

7. Project Children’s Rightsfor All: Activities Phase 1: Development of Research Tool Phase 2: Recruitment of National Experts and Training on Research Tool Phase 3: Drafting and compilation of National Reports and translation into English Phase 4: Development of European Comparative Report assoc. prof. Jan Šiška, PhD. 2013

8. Project Children’s Rightsfor All: Activities Phase 5: Development of Policy Recommendations at national and EU level Phase 6: Publishing of National Reports and European Comparative Report and Policy Recommendations Phase 7: Dissemination of reports www.childrights4all.eu assoc. prof. Jan Šiška, PhD. 2013

9. Project Children’s Rights for All: Focus • Statistical data • Education • Abuse • Health • Promotaion, participation, antidiscrimination • Deinstitutionalisation assoc. prof. Jan Šiška, PhD. 2013

10. Methodology The UN CRC considers all children to be “citizens with equal rights”, rather than just dependents of parents or recipients of public interventions. State and Shadow Reports and other official facts and figures Professional opinion Voices of children and their parents were heard in the focus groups and interviews. The reports reflects the research approach using the following resources: assoc. prof. Jan Šiška, PhD. 2013

11. Findings : General Assessment of the Implementation of the CRC • In this study we were also seeking to answer a question about • the extent of implementation of the CRC from the perspective of • children with intellectual disability in the countries involved. • Weassessed what the State Parties: • are planning to do in the specific areas with the aim of improving the situation of children with intellectual disabilities • are doing to achieve the given goals e.g. in a national plan or by national legislation that have clear outputs and an impact on the life of children with intellectual disabilities • and what State Parties are doing to improve their strategies on the basis of regular and systematic evaluation(statistical data, benchmark strategies, comparative studies etc.). assoc. prof. Jan Šiška, PhD. 2013

12. Findings : GeneralAssessmentoftheImplementationofthe CRC assoc. prof. Jan Šiška, PhD. 2013

13. Findings : Statistical Data • „States Parties are required to provide information relevant to the implementation of the Convention. State Parties shall provide information with regard to: follow-up, monitoring, resource allocation, statistical data providing e.g. data disaggregated by age, gender, urban/rural area, disability…“ • The General Guidelines forthe periodic reports submitted by States Parties under article 44 of the CRC assoc. prof. Jan Šiška, PhD. 2013

14. Findings : Statistical Data • It is clear that countries taking part in the project have some way to go to meet this requirement. At present, comprehensive information is not available for all five areas with regards to intellectual disability. • Most of the countries provide a very limited statistical picture of the lives of children with intellectual disabilities. • Most statistical information available usually relates to education, although there is also some in the realm of social security or health care assoc. prof. Jan Šiška, PhD. 2013

15. Protectionagainstviolenceand abuse - I • Absence of policy or strategy for the prevention of abuse or bullying of children with intellectual disabilities or other disabilities • Little information available about the forms of abuse suffered by children with intellectual disabilities – lack of empirical research and data • Assumption that preventive and reporting measures in case of abusesapply equally to all children assoc. prof. Jan Šiška, PhD. 2013

16. Protectionagainstviolenceand abuse - II • Inadequate measures for children with intellectual disabilities to express their views and to be heardand lack of appropriate supports to victims.(absence of alternative formats, communication barriers, lack of training of staff ) • Abuse in residential care: High number of persons with disabilities living in residential care. Progress are being made: inspection and statutory standards • Bullying (at school and in services): Underestimation of this phenomena and the lack of relevant prevention programmes and no information are provided to parents. assoc. prof. Jan Šiška, PhD. 2013

17. Family support andliving in thecommunity - I • Patchy availability of services: early intervention services, personal assistance, respite care, information about existing services • Unfair and unbalanced geographical distribution of services (urban/rural areas) • Lack of monitoring of quality of life in services for people with disabilities assoc. prof. Jan Šiška, PhD. 2013

18. Family support and living in the community – II • Lack of alternatives for children without parental care: • Child assessment in case of disability – do not refer to alternative forms of care (at individual level) • Foster care and adoptions policies do not take into consideration children with intellectual disabilities (at macrolevel) assoc. prof. Jan Šiška, PhD. 2013

19. „It is generally assumed that facilities and support for non-disabled children are equally available to children with disabilities“ (Austria) • „Any problems related to the family or the child´s behaviours are dealt with by isolating the child from the family and from community“ (Lithuania) assoc. prof. Jan Šiška, PhD. 2013

20. Education - I • Policy trends towards Inclusive Education (promoting pre-school and primary mainstream education) • Available data show that access to inclusive education for children with intellectual disabilities has increased but less than for children with disabilities in general. • Right to choose mainstream or special education: long and difficult battle assoc. prof. Jan Šiška, PhD. 2013

21. Education - II • Children with severe disabilities or complex needs are still excluded from inclusive education opportunities, some even do not access education. • Vocational training opportunities for children with intellectual disabilities are really poor. • Quality of Education: • „Ad hoc“ success rather than systemic changes • Role and training of teachers and assistants • Financial shift from special to mainstream education assoc. prof. Jan Šiška, PhD. 2013

22. Education - III • Consequences of both systems in parallel: disrupted educational paths of children with intellectual disabilities: • Back and forth between special and mainstream schools – changes of school • No inclusive opportunities at secondary level • No transfer of resources between primary and secondary education • High turnover of assistants Negative impact on the development of children! assoc. prof. Jan Šiška, PhD. 2013

23. „The right of children with intellectual disabilities to participatein their own local community alongside their peers remains far from being implemented, specially in education“ (Finland) • „The practice does not match and it still rare to find children with intellectual disabilities and with profound intellectual disabilities in particular in mainstream schools“ (UK) assoc. prof. Jan Šiška, PhD. 2013

24. Healthcare • Huge disparities in the European Union • Common problem: medical staff attitudes and interaction with children with intellectual disabilities and their families • Particular areas of concerns: mental health services for children, dental care • No comprehensive care for people with multiple disabilities or complex health needs • Systemic obstacles (the importance and the role of the diagnosis is still prevalent) • Discrimination based on disability assoc. prof. Jan Šiška, PhD. 2013

25. EncouragingParticipationandCombattingDiscrimination • Discrimination is a common occurrence (children with intellectual disabilities and their families) • Attitudes reduce the opportunities for informal learning and social interaction with peers. • Children with intellectual disabilities are hardly ever provided the opportunity to express their views • Absence of provisions on the right to participate for children with intellectual disabilities assoc. prof. Jan Šiška, PhD. 2013

26. „Laws are not consistent in the way they apply the principle ofequality, non-discrimination and equal opportunities“ (Greece) assoc. prof. Jan Šiška, PhD. 2013

27. KeyRecommendations - I • To ratify the CRC by the EU • To implement the CRPD in relation to children with intellectual disabilities • To take action to enlarge nation-wide quality community based services for children with intellectual disabilities to live included in their communities • To promote living in the community: governments must actively develop alternative family-type setting to stop new admissions of children in residential institutions assoc. prof. Jan Šiška, PhD. 2013

28. KeyRecommendations - II • To focus on better protection of children with intellectual disabilities against abuse, violence and bullying in all the places they frequent • To simplify and better coordinate health care, social care and rehabilitation services to facilitate the follow-up by families and professionals • To remove systemic barriers that hinder progress towards inclusive education: one common school system forinclusivecommunities • To consult with children with intellectual disabilities and their families throughout all the relevant sectorsandgive them opportunities to be heard assoc. prof. Jan Šiška, PhD. 2013

29. assoc. prof. Jan Šiška, PhD. 2013

30. Thank you! Jan jan.siska@pedf.cuni.cz www.childrights4all.eu assoc. prof. Jan Šiška, PhD. 2013