BLOG: Lack of data on children is an issue of major concern and weakens the protection of children’s rights worldwide.
Blogpost by Jenny Krutzinna, Senior Researcher at the DIPA-centre (firstname.lastname@example.org).
For years, UNICEF has been calling on world leaders to invest in better data on children, warning in particular about missing data concerning half of the child-related Sustainable Development Goals (SDGs) indicators. Without such data, effective child and children’s right protection is impossible, as problems remain invisible and discrimination unidentified.
Worryingly, data on the most vulnerable children, for example those with disabilities, many of whom are living in residential care, are very often unreliable and inadequate. The problem is systematic, with states having failed to implement appropriate data collection systems that allow to account for all children, and especially those in a vulnerable situation.
For example, the CRC Committee has criticised Germany for its lack of comprehensive data collection system covering all areas of the CRC, which constitutes a “major obstacle to the effective planning, monitoring and evaluation of policies, programmes and projects for children, especially in the fields of violence against children, children with disabilities, juvenile justice and child refugees, particularly unaccompanied child refugees.”
Even Norway, a country ranked amongst the highest on children’s rights indices, which provides disaggregated data on many issues, has recently been asked by the CRC Committee to improve its data collection system and, in particular, to provide disaggregate data by ethnicity to enable the country to identify and address ethnicity-based discrimination.
The problem is systematic, with states having failed to implement appropriate data collection systems that allow to account for all children, and especially those in a vulnerable situation.
– Jenny Krutzinna
Respected for all children
The right to non-discrimination is one of the four foundational principles of the UN Convention on the Rights of the Child (CRC). Article 2 CRC calls on State Parties to ensure that CRC’s rights are respected for all children, without discrimination of any kind, “irrespective of the child’s or his or her parent’s or legal guardian’s race, colour, sex, language, religion, political or other opinion, national, ethnic or social origin, property, disability, birth or other status.”
The UN Committee on the Rights of the Child’s General Comment No. 5 (2003) emphasises that the non-discrimination obligation under Art. 2 CRC requires States “actively to identify individual children and groups of children the recognition and realization of whose rights may demand special measures.” As an example, the Committee explains the need for data collection to be disaggregated to enable (potential) discrimination to be identified.
Despite this strong and unequivocal legal requirement, appropriate data collection remains a challenge and states continue to fall behind their CRC obligations.
Marginalisation and intersectionality
The CRC Committee expresses particular concern for children exposed to intersecting forms of discrimination. Such intersectionality, where the effects of multiple forms of discrimination (e.g., racism, sexism, ableism) accumulate, especially in the experiences of marginalised individuals or groups, remains invisible without appropriate data collection. That reliable and comparable data remains missing for some of the most vulnerable children compromises the effectiveness of children’s rights protection under the CRC.
That reliable and comparable data remains missing for some of the most vulnerable children compromises the effectiveness of children’s rights protection under the CRC.
– Jenny Krutzinna
A specific example are children with disabilities.[i] UNICEF notes a shortage of accurate and comparable data on the number of children with disabilities in almost all countries. Even basic statistical information is missing, let alone information about specific disabilities, intersectionality, or overall situation of disabled children.
This is despite this group of children being protected by another UN Convention, the Convention on the Rights of Persons with Disabilities (CRPD). The purpose of the CRPD, which is ratified by 182 countries, is “to promote, protect and ensure the full and equal enjoyment of all human rights and fundamental freedoms by all persons with disabilities, and to promote respect for their inherent dignity”, and one of its eight principles is non-discrimination.
The importance of statistics and data collection is emphasised in Art. 31 CRPD, which obliges states “to collect appropriate information, including statistical and research data, to enable them to formulate and implement policies to give effect to the […] Convention”, while complying with legal and ethical safeguards respecting persons with disabilities and their rights. Again, emphasis is placed on the need for disaggregated data, to identify and address the barriers faced by persons with disabilities in exercising their rights.
Understudied and adult-focused
Childhood disability remains chronically understudied (Tøssebro & Wendelborg, 2019) and statistics relating to disability, in so far as they are available at all, are adult-centric. In Europe, for example, comprehensive data on disabled people is scarce, and where data is systematically collected, this is usually done in adult-focused contexts, e.g. employment, such as the European labour force survey, which in 2011 included an ad hoc module on persons with disability.
Eurostat, the organisation responsible for providing statistical information to the institutions of the EU, notes several challenges to disability data collection, including that persons aged less than 15 or 16 are typically excluded and that currently disability statistics tend to rely on self-reporting of disabilities, which may lead to under-reporting due to stigma or unawareness that some medical conditions may also be considered disabilities.
In recognition of the unsuitability of existing, adult-focused tools for the use with children, UNICEF and the Washington Group on Disability Statistics developed the Child Functioning Module (CFM) designed to better identify all children with disability. The CFM was finalised in 2016 and has since been recommended by multiple UN agencies and disability organisations as the appropriate tool for SDG data disaggregation for children.
The continued disinterest in children with disabilities is deeply worrying.
– Jenny Krutzinna
Every child counts; counting every child
To date, political interest in identifying discrimination faced by disabled children has remained low. The CRPD Committee has repeatedly criticised states for their failure to honour their Art. 31 obligations. In 2017, the Committee criticised the United Kingdom for its missing unified data collection system and indicators and limited disaggregated data collection in general population surveys and censuses. Regarding Norway, the Committee (2019) expressed concern about the lack of consistent statistics on persons with disabilities and the lack of human rights indicators in the available data.
Both countries (and many others) have been encouraged to make use of the methodology of the Washington Group on Disability Statistics to “collect, analyse and disseminate data on its population disaggregated by sex, age, ethnic origin, type of impairment, socioeconomic status, employment, barriers encountered and place of residence, and data on cases of discrimination or violence against persons with disabilities.”
The continued disinterest in children with disabilities is deeply worrying. Research has demonstrated that these children are particularly vulnerable to abuse and neglect, especially those with learning, behavioural or sensory disabilities (Stalker & McArthur, 2012). They are also more likely to be deprived of family care and have less access to adequate healthcare, education, and child protection services (Fry et al., 2017).
Only by knowing who these children are and understanding their life experiences can discrimination be identified and fought, and children’s rights be effectively protected.
– Jenny Krutzinna
For instance, the CRPD Committee (2019) expressed concern that in Norway children may be removed from their parents and placed in care homes or taken by child welfare services based on their own or their parents’ disabilities. That data collection about children with disabilities remains inadequate and rights violations under-recognised (Fry et al., 2017) is unacceptable.
States must take their CRC and CRPD obligations seriously and start collecting meaningful, disaggregate data on all children. Particular attention should be paid to the effects of intersectionality. Only by knowing who these children are and understanding their life experiences can discrimination be identified and fought, and children’s rights be effectively protected.
Fry, D., Cameron, A., Vanderminden, J., & Lannen, P. (2017). Child protection and disability: Ethical, methodological and practical challenges for research. Dunedin Academic Press Ltd.
Stalker, K., & McArthur, K. (2012). Child abuse, child protection and disabled children: A review of recent research. Child Abuse Review, 21(1), 24–40.
Tøssebro, J., & Wendelborg, C. (2019). 12. Disability: An Implementation Paradox? In M. Langford, M. Skivenes, & K. H. Søvig, Children’s Rights in Norway (1st ed.). Universitetsforlaget. https://doi.org/10.18261/9788215031415-2019-13
UN Committee on the Rights of Persons with Disabilities. (2015). Concluding observations on the initial report of Germany. CRPD/C/DEU/CO/1.
UN Committee on the Rights of Persons with Disabilities. (2017). Concluding observations on the initial report of the United Kingdom of Great Britain and Northern Ireland (CRPD/C/GBR/CO/1). http://tbinternet.ohchr.org/_layouts/treatybodyexternal/Assets/pdf.gif
UN Committee on the Rights of Persons with Disabilities. (2019). Concluding observations on the initial report of Norway. CRPD/C/NOR/CO/1.
UN Committee on the Rights of the Child. (2003). General comment No. 5 (2003) General measures of implementation of the Convention on the Rights of the Child (arts. 4, 42 and 44, para. 6).
UN Committee on the Rights of the Child. (2014). Concluding observations on the combined third and fourth periodic reports of Germany. CRC/C/DEU/CO/3-4.
UN Committee on the Rights of the Child. (2018). Concluding observations on the combined fifth and sixth periodic reports of Norway. CRC/C/NOR/CO/5-6.
[i] In recognition of the different preferences, I chose to use both identity-first and person-first language here. I am fully aware that legal instruments such as the CRC and CRPD use person-first language (‘persons with disabilities’) while many members of different disability communities prefer identity-first language (‘disabled person’).