The use of online support by people with intellectual disabilities living independently during COVID-19.

BACKGROUND: During the COVID-19 outbreak, service providers in the Netherlands had to switch towards providing remote support for people with intellectual disabilities living independently. This study aims to provide insight into the use of online support during the outbreak. METHODS: We analysed quantitative data on planned and unplanned contacts between the online support service DigiContact and its service users. RESULTS: The results indicate that the COVID-19 outbreak and the related containment measures had a strong impact on online support use, specifically on the unplanned use of online support. CONCLUSION: Offering online support as a standard component of services for independently living people with intellectual disability enables service providers to be flexible and responsive towards fluctuations in both support needs and onsite support availability during a social crisis such as COVID-19.

The experiences of Dutch fathers on fathering children with disabilities: 'Hey, that is a father and his daughter, that is it'.

BACKGROUND: Due to a predominant focus on mothers, fathers of children with disabilities are greatly overlooked in research. One could argue that there is a lack of research on the multifaceted nature of fatherhood altogether. Therefore, this study aims to gain insight into the perceived experiences of fathers of children with disabilities. METHODS: These perceptions were studied by analysing data generated through semi-structured interviews, which were conducted with 12 Dutch fathers of children or young adults with disabilities. RESULTS: Categories found during our data analysis were similar to those illustrated in the 'conceptual framework on responsible fathering' by including role identification, commitment, employment characteristics, cultural expectations and social support. CONCLUSIONS: Overall, the fathers in this study reported similar experiences, but this study identified new life perspective as an additional category, which might be specific for fathers of children with disabilities. This new life perspective included a positive attitude, living in the moment, appreciation of the little things and transformation of expectations. Some fathers expressed that their child(ren) has enriched their lives, which positively influenced their fathering experience.

A quantitative assessment of educational integration of students with Down syndrome in the Netherlands.

BACKGROUND: In the Netherlands, as in many other countries, there are indications of an inclusive school policy for children with Down syndrome. However, there is a lack of studies that evaluate to what extent this policy has actually succeeded in supporting the mainstreaming of these students. METHOD: For the period 1984-2011, the number of children with Down syndrome entering regular education and the percentage of children still in regular education after 1-7 years were estimated on basis of samples from the database of the Dutch Down Syndrome Foundation. These estimations were combined with historical demographic data on the total number of children with Down syndrome in primary school age. Validity of the model was examined by comparison of the model-based estimations of numbers and percentages in regular education with relevant available empirical data from the Dutch Ministry of Education and from Dutch special schools. RESULTS: The percentage of all children with Down syndrome in the age range 4-13 in regular primary education has risen from 1% or 2% (at the very most about 20 children) in 1986-1987, to 10% (about 140 children) in 1991-1992, to 25% (about 400) in 1996-1997, to 35% (about 650) in 2001-2002 and to 37% (about 800) since 2005-2006. The proportional increase stopped in recent years. CONCLUSION: During the 1980s and 1990s, clearly more and more children with Down syndrome were in regular education, being supported by the then existing ad hoc regulations aimed at providing extra support in regular education. In the Netherlands, in 2003, these temporary regulations were transformed into structural legislation for children with disabilities. With regard to the mainstreaming of students with Down syndrome, the 2003 legislation has consolidated the situation. However, as percentages in regular education stayed fairly constant after 2000, it has failed to boost the mainstreaming of children with Down syndrome. The results of this study are discussed in the context of national and international legislation and educational policy.

More academics in regular schools? The effect of regular versus special school placement on academic skills in Dutch primary school students with Down syndrome.

BACKGROUND: Studies from the UK have shown that children with Down syndrome acquire more academic skills in regular education. Does this likewise hold true for the Dutch situation, even after the effect of selective placement has been taken into account? METHOD: In 2006, an extensive questionnaire was sent to 160 parents of (specially and regularly placed) children with Down syndrome (born 1993-2000) in primary education in the Netherlands with a response rate of 76%. Questions were related to the child's school history, academic and non-academic skills, intelligence quotient, parental educational level, the extent to which parents worked on academics with their child at home, and the amount of academic instructional time at school. Academic skills were predicted with the other variables as independents. RESULTS: For the children in regular schools much more time proved to be spent on academics. Academic performance appeared to be predicted reasonably well on the basis of age, non-academic skills, parental educational level and the extent to which parents worked at home on academics. However, more variance could be predicted when the total amount of years that the child spent in regular education was added, especially regarding reading and to a lesser extent regarding writing and math. In addition, we could prove that this finding could not be accounted for by endogenity. CONCLUSION: Regularly placed children with Down syndrome learn more academics. However, this is not a straight consequence of inclusive placement and age alone, but is also determined by factors such as cognitive functioning, non-academic skills, parental educational level and the extent to which parents worked at home on academics. Nevertheless, it could be proven that the more advanced academic skills of the regularly placed children are not only due to selective placement. The positive effect of regular school on academics appeared to be most pronounced for reading skills.

The impact of living arrangements and deinstitutionalisation in the health status of persons with intellectual disability in Europe.

BACKGROUND: Despite progress in the process of deinstitutionalisation, very little is known about the health conditions of people with intellectual disability (PWID) who live in large institutions and PWID living in small residential services, family homes or independent living within the community. Furthermore, there are no international comparison studies at European level of the health status and health risk factors of PWID living in fully staffed residential services with formal support and care compared with those living in unstaffed family homes or independent houses with no formal support. METHODS: A total of 1269 persons with ID and/or their proxy respondents were recruited and face-to-face interviewed in 14 EU countries with the P15, a multinational assessment battery for collecting data on health indicators relevant to PWID. Participants were grouped according to their living arrangements, availability of formal support and stage of deinstitutionalisation. RESULTS: Obesity and sedentary lifestyle along with a number of illnesses such as epilepsy, mental disorders, allergies or constipation were highly prevalent among PWID. A significantly higher presence of myocardial infarctions, chronic bronchitis, osteoporosis and gastric or duodenal ulcers was found among participants in countries considered to be at the early stage of deinstitutionalisation. Regardless of deinstitutionalisation stage, important deficits in variables related to such medical health promotion measures as vaccinations, cancer screenings and medical checks were found in family homes and independent living arrangements. Age, number of people living in the same home or number of places in residential services, presence of affective symptoms and obesity require further attention as they seem to be related to an increase in the number of illnesses suffered by PWID. DISCUSSION: Particular illnesses were found to be highly prevalent in PWID. There were important differences between different living arrangements depending on the level of formal support available and the stage of deinstitutionalisation. PWID are in need of tailored primary health programs that guarantee their access to quality health and health promotion and the preventative health actions of vaccination programs, systematic health checks, specific screenings and nutritional controls. Extensive national health surveys and epidemiological studies of PWID in the EC member states are urgently needed in order to reduce increased morbidity rates among this population.

Family quality of life in 25 Belgian families: quantitative and qualitative exploration of social and professional support domains.

BACKGROUND: This article reports on the results of a study conducted in Belgium on family quality of life situated within a larger project focusing on the development of support strategies for young and adolescent siblings of persons with intellectual disabilities. The objectives of this article are twofold: (1) to present the results of the measures contained in the nine domains of the Family Quality of Life Survey-2006 (FQOLS-2006) from the perspective of parents (quantitative analysis); and (2) to come to a more in-depth understanding of two important domains of the FQOLS-2006 by exploring and comparing the quantitative and qualitative data from open-ended interviews with parents. METHOD: The FQOLS-2006 was completed by the main caregivers of 25 families living in one typical Belgian province. Subsequently, semi-structured interviews with one or both parents were conducted within the same families. Content analysis was carried out on the transcribed interviews using the qualitative software package MaxQDA. RESULTS: A detailed analysis of the quantitative data together with data from the content analysis of the interviews revealed important issues with regard to two family quality of life domains, support from others and support from services. In general, parents were satisfied with the professional support they received, whereas they were more critical of support from others. CONCLUSIONS: The quantitative data from the FQOLS-2006 were supported and further explained by the qualitative data. These findings highlight the importance of adequate professional support, which is a flexible and capable answer to each family's individual needs. The authors warn of the dangers of 'handicapism' and plea for a family-centred support approach that takes the whole family into account. Finally, they indicate the benefits of increased practical-pedagogical support.

Changes in yearly birth prevalence rates of children with Down syndrome in the period 1986-2007 in The Netherlands.

BACKGROUND: The Netherlands are lacking reliable national empirical data in relation to the development of birth prevalence of Down syndrome. Our study aims at assessing valid national live birth prevalence rates for the period 1986-2007. METHOD: On the basis of the annual child/adult ratio of Down syndrome diagnoses in five out of the eight Dutch cytogenetic centres, the national annual figures of the National Cytogenetic Network on total numbers of postnatal Down syndrome diagnoses were transformed into national figures on total numbers of postnatal Down syndrome diagnoses in newborn children only. In combination with the national annual data of the Working Group for Prenatal Diagnostics and Therapeutics on numbers of Down syndrome pregnancies not aborted after diagnosis, national figures on birth prevalence were constructed. RESULTS: For the period 1986-2007, results based on the data of the cytogenetic centres are almost similar to the theory-based model data of de Graaf et al., with a small discrepancy of approximately 4%. Down syndrome birth prevalence in the Netherlands shows an upward trend from around 11 per 10,000 births in the early 1990s to around 14 per 10,000 births nowadays. CONCLUSION: In spite of expansion of antenatal screening in the Netherlands, Down syndrome live birth prevalence has risen in the last two decades as a result of rising maternal age. This increase in Down syndrome birth prevalence is in contrast to studies from other European countries.

The P15 - a multinational assessment battery for collecting data on health indicators relevant to adults with intellectual disabilities.

BACKGROUND: Health disparities between adults with intellectual disabilities (ID) and the general population have been well documented but, to date, no dedicated assessment battery for measuring health disparity has been available. This paper reports on the development and testing of a multinational assessment battery for collecting data on a range of health indicators relevant to adults with ID. METHODS: An assessment battery (the P15) was developed following piloting, and administered to samples of adults with ID, in 14 EU countries. Samples were neither random, nor representative of the countries from which they were drawn. However, within the local health administration areas selected in each country, efforts were made to ensure samples were broadly representative of the typical living circumstances, ages and ability levels of the administrative population of adults with ID. The total sample comprised 1269 adults with ID, of whom 49% were female. The mean age was 41 years (range 19 to 90). RESULTS: Overall, feasibility, internal consistency and face validity of the P15 was acceptable. CONCLUSIONS: With some refinement the P15 could be useful for collecting data on health indicators known to be particularly important for adults with ID. It is useable in a range of countries and has the potential to highlight health inequity for adults with ID at a national or local level. Larger scale epidemiological studies are needed to exploit the potential of the P15 to address health inequity in this group.

Evaluating the inter-respondent (consumer vs. staff) reliability and construct validity (SIS vs. Vineland) of the Supports Intensity Scale on a Dutch sample.

BACKGROUND: Despite various reliability studies on the Supports Intensity Scale (SIS), to date there has not been an evaluation of the reliability of client vs. staff judgments. Such determination is important, given the increasing consumer-driven approach to services. Additionally, there has not been an evaluation of the instrument's construct validity on a non-English speaking sample. This is important as the SIS is currently translated into 13 languages. METHOD: Data were collected in two different samples, using the Dutch translation of the SIS and the Vineland-Z. RESULTS: There was a significant correlation between ratings of staff and consumers on the SIS; however, the relationship between the mean scores of consumer and staff responses indicated significant differences in staff and consumer scores. All correlations between the Vineland-Z domains and the SIS subscales were significant and negative, ranging from -0.37 to -0.89. CONCLUSIONS: Analyses of the inter-respondent reliability suggest that one needs to consider the source of information regarding needed supports carefully. The significant negative correlations between SIS and Vineland-Z reflect that the SIS is measuring a different construct (needed support) than the Vineland-Z (adaptive behaviour). The results of the two studies provide additional support for the etic (universal) properties of the SIS, as both hypotheses were confirmed. In conclusion, SIS users are provided with a wealth of information that can be used for multiple purposes.