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.

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.

Health problems in people with intellectual disability in general practice: a comparative study.

In a GP database, 318 people with intellectual disability (ID) appeared to have 2.5 times more health problems than people without ID. This short report deals with the nature of the health problems. Consequences for health care policy are discussed.

People with intellectual disability in general practice: case definition and case finding.

In a general practice database containing data on 62,000 patients, those with intellectual disability (ID) were traced. Health problems in this database were recorded according to the International Classification of Health Problems in Primary Care (ICPC) code. By using selected codes, 318 people with ID (0.65% of the study population) were found; the sample contained nearly as many false positives. Adding up the percentage of people with ID living in residential facilities, the total prevalence of people with ID was estimated as 0.82%. Documentation on the cause and level of ID was available in about half of the cases. The demographic characteristics of the people with ID were significantly different from the general population: there was a higher percentage of males and a lower percentage of people over 50 years of age among those with ID. Information about the use of home care was virtually non-existent in the general practice data. The results are compared with those of other studies. The discussion deals with reasons for complete documentation of cases with ID in general practice and the role of the general practitioner in health care supply to people with ID.

Mortality and avoidable death in people with severe self-injurious behaviour: results of a Dutch study.

Mortality and avoidable death was studied in a cohort of 1168 people with severe self-injurious behaviour (SIB) in the Netherlands. Fifty-seven people died over a 5-year period (1990-1995). The observed mortality in the cohort studied was higher than the expected mortality. The age-specific mortality was highest in the 30-39-year-old age-group. Diseases of the respiratory system were found to be the most prevalent cause of death, followed by diseases of the nervous system and sensory organs. In six people (12%), the general practitioner and staff member considered SIB to be related to death. The causes of death were thought to be avoidable in two cases. The results are discussed in terms of data collection and avoidability of death.

Prevalence and incidence of health problems in people with intellectual disability.

The objective of this study was to determine the prevalence and incidence of the most frequent chronic health problems in relation to age in people with intellectual disabilities living in residential facilities in the Netherlands. A prospective cohort study was done with four data collections, each with an interval of one year. Data were collected by means of questionnaires which were completed by each person's physician. Striking results included the reported high prevalence and incidence of visual and hearing impairment, which was even more pronounced in people with Down's syndrome than in people with intellectual disability resulting from other causes. Gastrointestinal problems also appeared to have high incidence rates. Dementia was frequently reported in people with Down's syndrome aged 40 years and older. The results reflect the need for a more predictive policy which can anticipate health problems in people with intellectual disability.

The epidemiology of Alzheimer disease in intellectual disability: results and recommendations from an international conference.

Among adults with intellectual disability, virtually everyone with Down's syndrome (DS) over the age of 40 years has neuropathology currently viewed to be consistent with a diagnosis of Alzheimer disease (AD), while other adults with intellectual disability without DS display an increased prevalence of Alzheimer-type neuropathology after they reach the age of 65. This paper presents the results of discussions by an epidemiology workgroup, formed at an international conference convened to discuss AD among people with intellectual disability, concerning: (1) the incidence and prevalence of clinical dementia in adults with intellectual disability; (2) risk factors for the development of AD in adults with intellectual disability; and (3) a minimum data set that would be of great utility for future research on AD in adults with intellectual disability.

Persons with intellectual disability receiving psychiatric treatment.

Determinants of (1) referral to psychiatric services and (2) the amount of mental health care consumed were analysed in a population of individuals with intellectual disability, using data from a cumulative mental health case register in a defined geographical area. Associations between level of disability, gender, age and social environment on the one hand, and psychiatric referral and service consumption on the other were expressed as odds ratios (ORs). Being older (OR = 1.9; 95% CI = 1.5-2.5), having milder intellectual disability (OR = 1.4; 95% CI = 0.9-2.3) and living alone (OR = 5.8; 95% CI = 2.8-11.9) predicted a higher probability of receiving psychiatric treatment. Living alone (OR = 15.3; 95% CI = 1.7-136.1) was also associated with higher level of mental health service consumption.

Care dependence and activities of daily living in relation to ageing: results of a longitudinal study.

From 1990 to 1993, the University of Limburg and the Pepijn Centre, the Netherlands, have performed a prospective cohort study on ageing and intellectual disability. The key questions of the study were: "To what degree do the level of care dependence and activities of daily living (ADL) differ between age groups, and to what degree do these skills change during the study period (3 years)? Are the changes age related?'. Looking at the changes in time, the results show that the level of care dependence did not change substantially in the sample of 1602 residents of Dutch facilities for people with intellectual disability. Only the oldest residents (70+ years) showed a significant decline in independence. The results also show that the skills of young people with Down's syndrome (< 40 years) did not change substantially, whereas older people with Down's syndrome (40+ years) showed a substantial decrease in ADL-skills. The ADL-skills of the residents with other aetiological diagnoses younger than 60 years of age did not change substantially, while the older residents (60-69 and 70+ years) showed a significant decrease in ADL-functions. The trend between changes in ADL and age in both aetiological groups was statistically significant. Attention is paid to the implications of these findings in the discussion.

Comorbidity in people with Down's syndrome: a criteria-based analysis.

The aims of this study were to review what is currently known about comorbidity in people with Down's syndrome and to determine if their relative risk for certain disorders was increased. Analysis was carried out on the published literature from 1982 through 1994. In order to be included in this study, articles had to meet predetermined criteria. The strengths and weaknesses of the selected articles were considered in this review. The estimation of relative risks was done by calculating the odds ratio (OR). Odds ratios of > 2 or < 0.5 were found in more than one article for congenital heart defects, hypothyroidism, hearing impairment and hepatitis B. Only one article indicated an OR within this range for all of the following disorders: obesity, epilepsy, degenerative spine disorders and a wide atlanto-axial distance. The results were unclear in the areas of hyperthyroidism, visual disorders, dementia and psychiatric disorders. The concept of comorbidity, i.e. establishing the relationships between the various conditions in one person and understanding the implications for medical care, seems promising, especially for people with intellectual disability. Further work in this area may well improve the quality of care offered to these people.

Care dependence and individual care provision.

For policy purposes as well as for the provision of individual care, it is relevant to known which individual characteristics have impact upon the level of care dependence. For purposes of individual care provision, characteristics which can be influenced and which also have an important impact upon the care dependence are of interest. This study showed that the profoundly mentally handicapped are almost all totally dependent upon care, and therefore additional information about individual characteristics is superfluous. The results of logistic regression analyses showed a statistically significant and important impact of ADL-functions. Exactly which other characteristics are relevant to consider depends upon the level of care dependence and the level of mental handicap.

[Drug use by mentally handicapped persons in institutions and family-replacing residential facilities]. / Medicijngebruik door verstandelijk gehandicapten in instituten en gezinsvervangende tehuizen.

OBJECTIVE: Description of use of medication by people with mental handicaps in relation to age, level of mental handicap and living facility. DESIGN: Cross-sectional study. SETTING: Institutions and group homes for people with mental handicaps in North Brabant and Limburg, the Netherlands. METHODS: Of a patient sample (n = 1265), stratified according to age and living facility (i.e. institution or group home) data were collected by means of questionnaires to be completed by the general practitioners. For 101 persons data about level of mental handicap were lacking. RESULTS: 57% of the patients used one or more drugs. The numbers of drugs used were significantly related to (increased) age and level of mental handicap. Older patients more often used antipsychotics, laxatives and cardiovascular medication, younger ones more often used anticonvulsants. More severely handicapped persons used antipsychotics, anticonvulsants, laxatives, antacids, psychoactive medication and gastrointestinal medication more often. There was no relationship between amount of medication and living facility. CONCLUSION: Many mentally handicapped use medication. Since epilepsy, psychiatric and behavioural diseases and gastrointestinal problems are frequent, and because the patients offer little spontaneous information, alertness with respect to drug interaction and side effects is indicated.

The need for assessment of sensory functioning in ageing people with mental handicap.

Within the framework of a study on the ageing process of people with mental handicap in the Netherlands, information about visual and hearing impairments in 1583 people with mental handicap living in group homes or institutions was obtained from their physicians by means of a written questionnaire. Of the people with Down's syndrome (DS) who were older than 50 years of age, 46% had a visual impairment, whereas approximately 13% of subjects with other causes of mental handicap at the same age experienced similar visual impairment. Hearing loss in this age group was reported in 28% of people with DS, but only in 8% of subjects with other causes of mental handicap. The most common eye condition was cataracts, and the most frequent cause of hearing impairment was infection. In people with severe and profound mental handicap of all ages, sensory impairments were more frequent than in persons with mild or moderate mental handicap. Glasses or hearing aids were rarely used by people with severe or profound mental handicap. Assessment of visual and hearing impairments in people with mental handicap seemed clearly indicated, especially in those aged 50 years and older, in those with DS, and in those with severe or profound mental handicap.

Care dependence and services planning.

For policy purposes as well as for the provision of individual care, it is relevant to know which individual characteristics have an impact upon the level of care dependence. For policy purposes, it is preferable to predict the level of care dependence as efficiently as possible. This study of residents of institutions and group homes for people with mental handicap showed that profoundly mentally handicapped residents are almost all totally dependent upon care: additional information about the individual characteristics of this group is superfluous. The results of logistic regression analyses for residents with severe or mild mental handicap showed that age, gender and aetiological diagnosis (Down's syndrome or other) do not have significant predictive power. For the level of care dependence, adding the score on Activities of Daily Life (ADL) to the various models improved the predictive power. It depends on the level of mental handicap and on the level of care dependence which one wants to predict which other individual characteristics have to be included in order to improve predictive power.

Mental health problems in elderly people with and without Down's syndrome.

This article reports on age-specific findings of mental health problems among residents with Down's syndrome (DS) (n = 307) and without (non-DS) (n = 1274 in dutch group homes and institutes for people with mental retardation. Whereas a proportional increase of psychological problems was found for elderly DS persons with severe mental retardation, non-DS residents did not show such age-specific differences. High ratings of psychological problems for the elderly DS residents corresponded very well with the diagnosis of 'dementia' made by the physicians. Only for non-DS persons with severe mental retardation was a proportional decrease of challenging behaviour found with advanced age. Whereas psychological problems in elderly DS persons could be explained for the greater part of the diagnosis 'dementia', challenging behaviour--although also common in elderly DS--was shown to be a more independent phenomenon. With regard to psychiatric diagnosis, non-DS residents with mild retardation had six times as much a mental disorder, and non-DS residents with severe or profound mental retardation had up to 15 times as much, compared with their DS peers.