Overall situation of children with disabilities in member states

• Author: Hunt, Paula Frederica
• Pages: 11-28

Target Group Discussion Paper Children with disabilities

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alerted for violations of the right to housing for persons with disabilities and for the lack of

attention ‘to hold Governments accountable for failures to address widespread

homelessness and inadequate housing among persons with disabilities’ (UN Report of the

Special Rapporteur on adequate housing as a component of the right to an adequate

standard of living, and on the right to non-discrimination in this context, 2017 – p.19). The

legal obligations regarding the right to ECEC (as indicated in Vandenbroeck, 2019) are

those outlined in the UNDHR (Art.26) and the CRC (Art.28) that guarantee a right to free

elementary and fundamental education (in particular, General Comment No 7 that

specifically addresses ECEC), and in the Sustainable Development Goals (SDG – 4.2).

In summary, EU Member States have the same obligations towards children with

disabilities as they do towards all other children. In addition, children with disabilities are

awarded specific protections and services, as needed, to ensure their full participation. If

implemented fully, with rigorous monitoring and enforced redress, the existing

international treaties such as the CRC, CRPD, and other policy guidelines such as the

European Disability Strategy and the SDG guidelines, would partially address the situation

and policies related to persons with disabilities in the EU; although the CRPD, the European

Disability Strategy and the SDGs lack focus on children. Thus, the argument is made for a

Child Guarantee that can ensure children with disabilities are at the forefront of policy.

Overall situation of children with disabilities in Member

States

As mentioned previously, it is estimated that 80 million people in Europe have a disability.

The number of persons with disabilities varies widely from country to country due to

differences in the definition of disability, in data collection methodologies, and in

discrimination faced by persons with disabilities themselves which often prevent them from

self-reporting.

Data on barriers to social integration5 for persons with disabilities aged 15 and over

(collected by the EU in 2015) provide an overview of the situation of persons with

disabilities in Europe. Persons with disabilities themselves reported barriers related to:

mobility (52.9%); transport (31.7%); accessing buildings (37%); education and training

(25.6%); employment (38.6%); using the internet (4.6%); social contact (2%); pursuing

leisure (60.9%); paying for the essential things in life (22.7%); and perceived

discrimination (19.8%). 35.5% of all respondents indicated a barrier in one life area,

28.8% in two or three life areas, and 35.7% in four or more life areas. Of all persons with

disabilities, 81.5% reported difficulties with basic activities, 43% reported difficulties with

basic care activities, and 53.1% reported difficulties with household care activities.

3.1 Relative size of the group of children with disabilities and overall

poverty/social exclusion situation in the Member States

Availability of data

As explained above, identifying and measuring disability according to the social model

goes beyond identifying and measuring an impairment. It is a description of a

person’s life sit uation, including their impairment but also acknowl edging the

environmental and personal factors that are acting as barriers to (or enablers of) their

participation. Therefore, to identify a person with a disability it is necessary to describe the

life situation of the person, including the person’s health co ndition (impairment),

their activities and participation restrictions, and the environ mental factors that

support their participation, as follows:

Impairment: significant problems in bodily function (physiological functions) or

structure (anatomy) – such as voice and speech functions; structures of the nervous

system; and structures related to movement.

5 https://ec.europa.eu/eurostat/data/database?node_code=hlth_dsi080

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Activity limitations and participation restrictions: activity limitations are difficulties

people have in executing activities, while participation restrictions are the difficulties

they face in being involved in a life situation. They are usually described in relation

to nine domains: learning and applying knowledge; general tasks and demands;

communication; movement; self-care; domestic life areas; interpersonal

interactions; major life areas (education, employment, economic life); and

community, social; and civic life.

Environmental personal factors: contextual factors that may influence participation

– such as assistive technology; natural and man-made environment; support and

relationships; attitudes; and services, systems, and policies. Personal factors

include gender, age, social/religious background, past and present experiences,

ethnic background, and profession.

Only by investigating and studying the relationships between these three sets of

determinants can ‘disability’ be established. To be effective in identifying disability (and

providing adequate services) it i s important to start as early as p ossible in the child’s life,

consider disability determination as a whole-person assessment, and take into

consideration the person through the lifecycle. In all cases, gathering information on all

three sets of determinants requires that various persons (starting with the most immediate

family) provide information related to all aspects of a person’s life; and that that

information be collected and made available in ways that create one single picture of the

person, and be made sense of by those who are the most likely to make a difference in the

person’s life (starting with the person themself, their family and closest community, and

professionals familiar with the person and their services). Only then can functional profiles

be developed, always leading to service supports.

These complex data are not collected at EU level.

Furthermore, until 2017, all cross-country comparative surveys gathered data on health

conditions starting at age 15 or 16, and relevant information on issues specific to younger

children was not gathered6. While data on adults with disabilities may be indicative of the

overall prevalence of disability in a particular country, they do not replace data on children

with disabilities because they do not capture the situation along the lifecycle and in specific

domains particular to children.

An ad hoc module on children’s health was added to the 2017 EU Statistics on Income and

Living Conditions (EU-SILC), gathering information on the general health and limitation in

activities due to the health problems of children aged less than 16, as well as information

on their unmet needs for dental care, medical examination or treatment (see Section 4 for

an analysis of these data). However, as explained above, although the data gathered shed

some light on issues related to health and limitations it cannot be understood as equivalent

to data on disability. It is also important to note that people living in institutions are not

included in the EU-SILC sample. This also means that children with disabilities who live in

institutions are not taken into account in the analysis below.

Figure 3.1 provides the proportion of children experiencing limitations in their daily

activities in the various EU countries. While the data gathered in the 2017 ad hoc module

on children’s health are very important and have the potential to shed some light not only

on children’s access to healthcare but also health-related functional limitations, these data

need to be used with caution when determining the size of the population of children with

disabilities in a given country because, as indicated above, one’s health status does n ot

directly correspond to dis/ability. General health and/or impairment data cannot be used

as a proxy for disability. All data related to contextual and personal factors are important

when determining disability and functioning. To understand the scope of disability it is

important to know how particular health conditions interact with the environment, which

are the environmental barriers, and which are potential facilitators; only a complete picture

6 One exception is data collected on items related to child material deprivation, which led to the adoption of an

EU indicator in 2018: https://www.liser.lu/?type=news&id=1529. For more information on this indicator, see:

https://link.springer.com/article/10.1007%2Fs12187-017-9491-6.