EUGLOREH project
THE STATUS OF HEALTH IN THE EUROPEAN UNION:
TOWARDS A HEALTHIER EUROPE

FULL REPORT

PART II - HEALTH CONDITIONS

8. DISABILITIES

8.2. SPECIFIC DISABILITIES

8.2.1. Intellectual disability

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8.2. SPECIFIC DISABILITIES

 

 

 

8.2.1. Intellectual disability

 

 

8.2.1.1. Introduction

 

Intellectual disability has emerged as the preferred term for a condition formerly known as mental handicap or, in the United States, mental retardation. By contrast, in the United Kingdom learning disability is currently used. Multiple terms give rise to some confusion about the characteristics of people in this group, and it is still the case that intellectual disability is sometimes interchanged, erroneously, with mental health or psychiatric difficulties. They are distinct terms, although people with intellectual disabilities may incur mental health difficulties in the course of their lives.

The condition is present from birth or the early developmental period and is characterized by significant limitations in both cognitive and adaptive functioning – for example, in communication or activities of daily living. Recent formulations have emphasized the importance of the individual’s health as an essential requirement for lifelong community participation and also as a key indicator of quality of life (AAMR, 2002).

 

Persons with intellectual disabilities (ID) are frequently the most vulnerable group and, on many occasions, are exposed to human rights violations and deprived of minimum services and dignity. These persons are also the most likely to be secluded in large institutions, unable to access basic health and educational services, and excluded from ordinary social relations. Although it is well known that intellectual disability is a neglected area, essential information about the presence or absence of resources and services for this population does not even exist in most of the countries of the world (WHO, 2007).

People with intellectual disabilities have made marked gains in life expectancy in recent decades (WHO 2000). Despite increased longevity, people in this group show negative disparities in health status and in access to optimal health care. Across the lifespan, not only do they experience the risks to physical and mental health incurred by their peers in the general population, but also they are more likely to incur additional health problems and, thus, to report increased morbidity and poorer health status. For example, higher rates of obesity, mental health disorders, and lower rates of cardiovascular fitness, vaccination levels, and preventative health screening have been identified among people with intellectual disabilities, not to mention and mental health difficulties with a high rate of prevalence. This section presents an overview of available prevalence data, health-related evidence from the published literature and current health information at country and regional levels.

 

8.2.1.2. Data sources

 

Population-based data related to the prevalence of intellectual disability are not common in most European countries, as the authors of the final Report of Pomona-1, funded by DG-SANCO 2002-2004, concluded (Linehan et al 2004).  However, some countriesIreland, for examplerecord administrative data about individuals with intellectual disabilities who are known to formal service systems (www.hrb.ie). It may be inferred that these databases under-report this population by omitting persons not known to formal services, those with mild levels of intellectual disability or young children who have not entered school.

Population-based health related data can also be gathered at country level, for example through a post census survey of a representative sample.  In this way, people with intellectual disabilities can be recognised and their characteristics, health outcomes and use of health services may be compared with those of their peers in the general population.  A National Disability Survey of this kind was undertaken by the Central Statistics Office in Ireland following the Census of 2006, and preliminary results will be announced in October 2008 (www.cso.ie/nds). 

Health-related data about people with intellectual disabilities have amassed recently. Data are available from scholarly articles, project reports and national surveys in the Member States, although these data vary in scope and external validity, and are typically not linked to other databases.  A notable exception is the Netherlands, where GPs (primary care physicians) are able to identify those patients on their registers who have intellectual disabilities, and may thus compare their health outcomes and service utilization patterns with those of patients from the general population (Straetmans, van Schrojenstein Lantman-de Valk et al 2007).

Further, people with intellectual disabilities have until recently been absent from public health surveys.  Thus, attempts to monitor their health have hitherto been sporadic or accomplished through community studies and convenience samples.   References included in this Chapter represent recent studies related to the health of people with intellectual disabilities drawn from peer-reviewed literature and policy documents.

Inclusion of people with intellectual disabilities within national health interview (HIS) and health examination (HES) surveys of population health was identified as a potentially valuable resource for identifying health disparities (Scheepers et al., 2005). The European Union Health Surveys Information Database (EUHSID) is an inventory of population health related surveys in Europe (www.iph.fgov.be/hishes/).  It comprises a major element of the developing European Health Survey System by providing open access to existing and new health interview and health examination surveys conducted throughout the European Union. In May 2007, an examination of a sample of these surveys was undertaken as an activity within the Pomona-2 project (www.pomonaproject.org). A total of 123 surveys, conducted in 17 European countries (all of which were currently represented in Pomona-II, or had previously been partners in Pomona-I) were examined.  The surveys were conducted over two decades (1986-2005), with the majority (60%) being undertaken between the years 2000 to 2003. The scope of the surveys varied widely ranging from smaller health barometer surveys with sample sizes of N=1,000, to population based census surveys reporting sample sizes in excess of N=10 million.  Preliminary findings at time of writing suggest that it is very much the exception for a survey to include a sample of people with intellectual disabilities, either through sampling residential centres or by use of proxy respondents.  Further, it is uncommon for an individual to be identified specifically as having intellectual disability: rather, such individuals are described as having a more general long term condition. It was not possible to identify a source of comparable data based on population estimates that specifically related to the health of people with intellectual disabilities in Europe. Mindful of these gaps in knowledge, the Pomona Group began in 2002 to gather available evidence and to develop health indicators permitting comparable health information across Europe.  A set of 14 Country Reports gives considerable detail on each country’s history of provision for persons with intellectual disabilities, current service systems and sources of information.  They are available in two Interim Reports for 2006 and 2007 that can be found on the project website www.pomonaproject.org. The project’s Final Report was submitted to Luxembourg in October 2008, and once approved it too will be available on the website.

 

Definitions

Intellectual disability is defined by ICD 10 (World Health Organisation’s International Classification of Diseases, Version 10, 1992) as a condition of arrested or incomplete development of the mind, which is especially characterized by impairment of skills manifested during the developmental period’. DSM IV (American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders, Version IV, 1994) provides a similar definition: “a developmental condition that is characterized by significantly lower than average level of general intellectual functioning”. Both ICD10 and DSM IV definitions note that deficits in intellectual functioning must be accompanied by deficits in ‘adaptive behaviour’, defined as age appropriate functioning in everyday activities such as communication, self care, education, work, leisure time and health.

This dual-criterion approach (Schalock et al., 2007), emphasizing deficits in both intellectual functioning and in adaptive behaviours was pioneered by the American Association on Intellectual and Developmental Disabilities (formerly the American Association of Mental Retardation) whose current definition of intellectual disability is ‘a disability characterized by significant limitations both in intellectual functioning and in adaptive behavior as expressed in conceptual, social, and practical adaptive skills. This disability originates before age 18’ (AAMR 2002, p8). Changes in definition reflect the transition from a medical approach to disability, where the disability is perceived as a person-centered trait (typically referred to as a ‘deficit’) to a more ecological approach, where a disability is defined in the broader context of the interaction between the person and his/her environment, and the supports that are required by the individual to enhance this interaction (Schalock et al., 2007).

 

8.2.1.3. Data description and analysis

 

Prevalence

 

The prevalence of in the general population of Western countries is in the range of 0.3-0.4% for severe mental retardation (IQ <50) and 3% for moderate mental retardation (IQ 50-70) (Roeleveld et al, 1997; Felce et al, 1994).

 

Prevalence of intellectual disability in adults has been found to be 0.36% in whites and 0.32% in South Asian residents in Leicestershire, based on 1991 data of the Leicestershire Learning Disabilities Register and of census (McGrother et al, 2002). The UK Department of Health estimates that the prevalence of severe and profound learning disabilities in the population is about 0.44%, and that of mild to moderate learning disabilities is at least 2.5%. Prevalence of severe and profound learning disability is fairly uniformly distributed across the country and across socio-economic groups. Mild to moderate learning disability, however, has a link to poverty and rates are higher in deprived and urban areas (UK DoH, 2001).

 

A study of two cohorts of children (altogether 21397 individuals) in Northern Finland, who were followed up to the age of 11.5 years, showed a prevalence of 1.1% (Heikura et al, 2003). A similar prevalence of mental retardation (1.2%) had been found in another study carried out in a cohort of 12058 children followed up to the age of 14 in Northern Finland. It showed a prevalence of severe mental retardation (IQ less than 50), mild mental retardation (IQ between 50 and 70) and mental subnormality (IQ between 71 and 85) equal to 0.6%, 0.6% and 1.4%, respectively. Down syndrome was present with a prevalence of 0.32% (Rantakallio and von Wendt, 1986). Prevalence of severe and profound intellectual disability (SPID) in Finland was 0.13% based on the register of the Pääjärvi Centre for the Mentally Retarded (Lammi, Finland). The aetiology of their SPID was genetic or congenital in 51% cases, acquired in 19%, genetic or acquired in 18%. Among all cases, 9% had SPID as the only associated impairment, while the others had between one and six associated impairments (Arvio and Sillanpää, 2003).

 

In Aarhus (Denmark) an epidemiological census study among children under 15 years, showed an age-specific prevalence of severe mental retardation of 0.34% (Bersen, 1976).

 

Prevalence estimates may vary among studies due to the different circumstances of the ascertainment such as the use of different definitions, the population representativity of the cohorts studied and the limited sensitivity of the registers, especially towards mild to moderate cases.

 

Vulnerable groups

 

Overall, it is important to recall that poverty and social disadvantage are strongly associated with the presence of intellectual disabilities in both developed and less developed countries.

In their countries, people with intellectual disabilities may be said to comprise a vulnerable group at risk of health inequalities – in Canada, for example (Ouellette-Kuntz 2005). Among people with intellectual disabilities, however, some groups are particularly vulnerable to health risks. Evidence suggests that lower socio-economic status contributes substantively to the greater health risks experienced by, for example, children and adolescents with intellectual disabilities (Emerson and Hatton, 2007a and 2007b).

 

8.2.1.4. Risk factors

 

Causes of intellectual disability

A number of factors causing intellectual disability have been discovered, but many causes are still unknown. Intellectual disability can start anytime before a child reaches the age of 18 years. It can be caused by injury, disease, or a brain abnormality. These causes can happen before a child is born or during childhood. For many children, the cause of their intellectual disability is not known. Some of the most common known causes of intellectual disability are Down syndrome, fetal alcohol syndrome, and fragile X syndrome, all of which occur before birth. Other causes that take place before a child is born include genetic conditions (such as Cri-du-chat syndrome or Prader-Willi syndrome), infections (such as congenital cytomegalovirus), or birth defects that affect the brain (such as hydrocephalus or cortical atrophy), or are related to nutritional deficiencies and metabolic conditions of the mothers and to smoking during pregnancy. Other causes of intellectual disability are related to premature delivery and low birth weight, or happen while a baby is being born or soon after birth (such as trauma and asphyxia). Still other causes of intellectual disability do not happen until a child is older. These may include serious head injury, stroke, or certain infections such as meningitis, or exposure to lead, mercury, and other toxins.

 

Some metabolic conditions, such as phenylketonuria (PKU), galactosemia, and congenital hypothyroidism, can cause intellectual disability and other problems if babies with these conditions do not begin treatment soon after birth. Parents and doctors can find out if a child has one of these conditions through simple tests.

 

Health risks of people with intellectual disability

Lack of comparable health information about people with intellectual disabilities impedes monitoring at both population and clinical levels (van Schrojenstein Lantman-de Valk and Walsh, in press). Although evidence demonstrates that they experience negative health disparities, people with intellectual disabilities typically encounter barriers to optimal health prevention, promotion and care. As Cooper et al (2006) note, regular health screening can detect unmet health needs, but as people with intellectual disabilities rely on health management by proxy, through a family carer or professional support worker, there are many potential access barriers. These authors report sustained benefits in health outcomes following a clinical health screening intervention for participants with intellectual disabilities when compared with those who received standard treatment alone. They suggest that implementing such screening would reduce health inequalities.

People with intellectual disabilities are traditionallyinvisible’ to public health monitoring. In general, health information is not available to permit comparisons of people in this group with their peers in the general population, nor to track changes in health status or use of health services over time.

An emerging perspective is that multiple and complex factors associated with access to care, identification of disease and treatment availability contribute to negative health disparities among people with intellectual disabilities. The observed poorer health status is thought to reflect a combination of factors including, for example, genetic predispositions to certain health conditions, less favourable social circumstances typically experienced by people with intellectual disabilities, reluctance or inability to utilise generic health services, omission from public health awareness campaigns and residential circumstances that foster inactivity and poor lifestyle choices. Diagnosis may be influenced by the presence of disability through diagnostic overshadowing (Prosser, Moss, Costello, Simpson, Patel & Rowe1998; Mason & Scior 2004). Visual and dental care needs are often undetected and untreated (Schultz, Shenkin & Horwitz, 2001). People with intellectual disabilities are doubly disadvantaged as dental or medical treatments may be withdrawn due to behavioural issues (Fisher 2004).

Arguably, stigmatisation and stereotypical beliefs regarding people with intellectual disabilities (Scheepers et al 2005) are among the factors likely to contribute to their unmet health needs. Further, the absence of comparable, systematically gathered, population-based health information exacerbates negative disparities in health experienced by Europeans with intellectual disabilities.

In the United Kingdom, Emerson and Hatton (2007a) examined data for a sample of n=10,438 British children, finding that intellectual disability was a significant risk factor for poorer general health. These authors concluded that socio-economic disadvantage may account for a significant proportion of the increased risk for poorer health and mental health of children and adolescents with intellectual disabilities.

In a survey of 1542 adults with intellectual disabilities living in supported accommodation in England, Emerson (2005) found significant deviations from normal weight and lack of physical exercise compared with the general population. These behavioural health risks were associated with genderwomen were at increased risk of obesity, for example – and other factors such as severity of intellectual disability, age and location.

 

8.2.1.5. Control tools and policies

 

People with intellectual disabilities comprise an exceptionally disadvantaged segment of the population and health inequalities are evident. They encounter greater health risks, experience poorer physical and mental health outcomes and typically have limited access to health promotion initiatives devised for the general population. Applying current interactive, ecological frameworks of disability, the health of people with intellectual disabilities should be considered within individualssocial and economic environments. Experts endorse a life course approach to health promotion and thus avoidance of the secondary health conditions for which people with intellectual disabilities are at greater risk (Rimmer, 1999).

 

8.2.1.5.1. Primary prevention

 

Some cases of intellectual disability can be prevented with proper medical care. Children diagnosed with an intellectual disability are most successful when they get help early in life. Fetal alcohol syndrome is a highly common and totally preventable cause of intellectual disability. Women should be informed of the seriously damaging effects of drinking alcohol during pregnancy and should refrain from drinking alcoholic drinks. Doctors may recommend genetic testing for people who have a family member or other child with a known inherited disorder, particularly ones related to intellectual disability, such as phenylketonuria, Tay-Sachs disease, or fragile X syndrome. Identification of a gene for an inherited disorder allows genetic counselors to help parents evaluate the risk of having an affected child. Women who plan to get pregnant should receive necessary vaccinations, particularly against rubella. Women who are at risk for infectious disorders that may be harmful to a fetus, such as rubella, should be tested before getting pregnant. Proper prenatal care lowers the risk of having a child with intellectual disability. Folic acid, a vitamin supplement, taken before conception and early in pregnancy can help prevent certain kinds of brain abnormalities. Advances in the practices of labor and delivery and in the care of premature infants have helped to reduce the rate of intellectual disability related to prematurity.

Certain tests, such as ultrasound, amniocentesis, chorionic villus sampling, and various blood tests, can be performed during pregnancy to identify conditions that often result in intellectual disability. Amniocentesis or chorionic villus sampling is often used for women at high risk of having a baby with Down syndrome, especially those aged 35 and older, and for women with family histories of metabolic disorders. Most conditions, however, cannot be treated, and early recognition can serve only to prepare the parents and allow them to consider the option of termination of pregnancy. Screening programmes may also prevent intellectual disability and other consequences resulting from some kinds of metabolic conditions, such as phenylketonuria (PKU), galactosemia, and congenital hypothyroidism. Children that do have these conditions are usually treated with medicine or put on a special diet. If the correct treatment is started soon enough after the child is born and continues as long as needed, the child will not have intellectual disability. It is also important for women with PKU to follow a special diet when they are pregnant. If they do not follow their diets, their babies are very likely to be affected by intellectual disability and other birth defects.

 

Secondary prevention

A growing body of evidence suggests that health promotion programmes that specifically target persons with intellectual disabilities are effective. For example, providing suitable programmes of physical activity and accessible information about nutrition can help to equip individuals with information and behaviours that will lead to more active, healthy lifestyles and thus reduce the risks of obesity, diabetes and related conditions in the old age.

Efforts at the level of health systems are also recommended to improve health outcomes for people with intellectual disabilities. Preparation of health professionals is a key target area for intervention. Considerable evidence indicates that specific training on how to identify and meet the health needs of people with intellectual and other disabilities is an important element in the formation of doctors, nurses and other health professionals who are to care intellectually disabled people (Lennox, 2005). Pending approval, the Final Report of Pomona II will provide detailed information on the current extent of training for doctors and other health professionals who work with persons with intellectual disabilities in 14 participating countries (13 MS and 1 EEA country).

The Pomona project surveyed current practices in 14 European countries and made recommendations for further development of curricula for preparing health professionals to work effectively with persons who have intellectual disabilities. Models of good practice – at medical faculties in two universities in the Netherlands, for instance – have been identified8.

Internationally, family care is the dominant form of support for people with intellectual disabilities. Arguably, the health and quality of life of family carers should be taken into account when considering the health of the individuals for whom they provide care. Family carers often act as the initial contacts on behalf of their family members when health care is sought. They may incur health risks exacerbated by their roles as carers, especially if formal supports are inadequate.

 

Policies

EU policy focuses on reduction of health inequalities (see the chapter on policies related to overall disabilities). People with intellectual disabilities are very likely to experience health inequalities, yet to date there are no systems in place to gather population-based health data about this segment of the population.

 

8.2.1.6. Future developments

 

More robust, systematic gathering of health information about the health of people with intellectual and other disabilities is a priority. A first step is to ensure that the Member States and other European countries have strategies to gather systematic, comparable health information about citizens with intellectual disabilities. Health indicators are essential in order to permit comparisons between persons who have intellectual disabilities and the general population, and also to compare health outcomes, determinants and systems related to persons with intellectual disabilities across countries.

It is notable that the UN Washington Group aims to guide the development of a small set or sets of general disability measures, suitable for use in censuses, sample based national surveys, or other statistical formats, for the primary purpose of informing policy on equalization of opportunities9. The Group have selected the WHO’s ICF (2001) as the framework for the development of sets of appropriate survey measures.

Reducing health disparities is another identified priority for those charged with identifying the health needs and improving the lifelong health of people with intellectual disabilities (Scheepers, Kerr et al 2005). At European Community level, all health disparities that are deemed to be avoidable and unjust are inequalities, and must be addressed vigorously. People with intellectual disabilities in Europe may thus rightfully expect that policy makers at Community level as well as within their own countries will make optimal investments in their lifelong health a matter of priority.

Identifying and managing age-related health risks for people in this group – for example, older adults with Down syndrome who are particularly vulnerable to developing dementia of the Alzheimer’s type - will continue to grow in importance as life expectancy increases (Walsh 2005). Reflecting social policies in the Member States favouring social inclusion, more middle-aged and older people with intellectual disabilities are likely to live in the community and it may be envisaged that they will increasingly seek generic health and social services as they age. Improving access to health promotion programmes, to health care and to optimal interventions on the part of people with intellectual disabilities will have an impact on health service systems in their countries. For example, Straetmans, van Schrojenstein Lantman-de Valk et al (2007) presented evidence that patients with intellectual disabilities in general practices (primary care practices) in the Netherlands required more consultation time and greater supervision of compliance with prescribed medications than patients of the same age and gender in the general population. Nonetheless, variations in the patterns of residence of people with intellectual disabilities and the forms of support available to them at different stages of the lifecourse are apparent when countries such as diverse as Austria, Italy, Romania or Lithuania are surveyed (Linehan, Walsh et al. (2nd Interim ReportPomona-2 Project: Submitted 30 June 2007).

8.2.1.7. References

 

American Association on Mental Retardation (2002). Mental Retardation Definition, Classification, and System of Supports (10th Ed) Washington, DC: American Association on Mental Retardation

American Psychiatric Association, (1994). Diagnostic and Statistical Manual of Mental Disorders. 4th Edition, Washington DC, American Psychiatric Association.

Cooper, S.-A. Morrison, J., Melville, C. Finlayson, J., Allan, L., Martin, G. and Robinson, N. (2006). Improving the health of people with intellectual disabilities: outcomes of a health screening programme after 1 year. Journal of Intellectual Disability Research 50 (9), 667677.

Emerson, E. (2005) Underweight, obesity and exercise among adults with intellectual disabilities in supported accommodation in Northern England. Journal of Intellectual Disability Research 49, 134143.

Emerson, E. and Hatton, C. (2007a). Contribution of socioeconomic position to health inequalities of British children and adolescents with intellectual disabilities. American Journal on Mental Retardation 112, 140-150.

Emerson, E. and Hatton, C. (2007b). Poverty, socio-economic position, social capital and the health of children and adolescents with intellectual disabilities in Britain: a replication. Journal of Intellectual Disability Research 51, 866-874.

Fisher, K., (2004). Health Disparities and Mental Retardation. Journal of Nursing Scholarship, First Quarter 2004, 48-53

Fujiura, G.T., Park, H. J. and Rutkowski-Kmitta, V. (2005). Disability Statistics in the Developing World: A Reflection on the Meanings in our Numbers. Journal of Applied Research in Intellectual Disabilities 18, 295-304.

Kramers, P.G.N., (2003). The ECHI project: Health Indicators for the European Community. European Journal of Public Health 13S: 101-6.

Lennox N, Beange H, Davis R, et al. Management GuidelinesDevelopmental Disability (2005) Melbourne, Australia: Therapeutic Guidelines Limited.

Linehan, C., Walsh, P.N., et al., (2007). POMONA Interim Report. http://www.pomonaproject.org/pomona2_interim_4_report.pdf Accessed 17 October 2008

Mason, J., & Scior, K., (2004). Diagnostic overshadowing among clinicians working with people with intellectual disabilities in the UK. Journal of Applied Research in Intellectual Disabilities, 17, 85-90

Ouellette-Kuntz, H., (2005). Understanding Health Disparities and Inequities faced by Individuals with Intellectual Disabilities. Journal of Applied Research in Intellectual Disabilities, 18, 113-121

Pezzementi and Fisher (2006). Oral health status of people with intellectual disabilities in the southeastern United States. JADA, Vol. 136, 903-012.

Prosser, H., Moss, S., Costello, H., Simpson, N., Patel, P., & Rowe, S. (1998). Reliability and validity of the Mini PAS-ADD for assessing psychiatric disorders in adults with intellectual disability. Journal of Intellectual Disability Research, 42 (4), 264-272.

Rimmer,J.H. (1999). health promotion for people with disabilities: The emerging paradigm shift from disease prevention to prevention of secondary conditions. Phys Ther 79, 595-502.

Schalock R.L., Luckasson, R.A. and Shogren K.A., With Borthwick-Duffy, S., Bradley,V., Buntinx, W.H.E., Coulter, D.L., Craig, E.M., Gomez, S.C., Lachapelle, Y., Reeve, A., Snell, M.E., Spreat, S., Tasse, M.J., Thompson, J.R., Verdugo, M-A, Wehmeyer, M.L. and Yeager, M.H. (2007). The Renaming of Mental Retardation: Understanding the Change to the Term Intellectual Disability. INTELLECTUAL AND DEVELOPMENTAL DISABILITIES 45, 116124.

Schultz, S., Shenkin, J., & Horowitz, A. (2001). Parental perceptions of unmet dental need and cost barriers to care for developmentally disabled children. Pediatric Dentistry 4, 321-325.

Scheepers M, Kerr M, OHara D, Bainbridge D, Cooper S-A, Davis R, Fujiura G, Heller T, Holland A, Krahn G, Lennox N, Meaney J & Wehmeyer M (2005). Reducing health disparity in people with intellectual disabilities: A report from Health Issues Special Interest Research Group of the International Association for the Scientific Study of Intellectual Disabilities. Journal of Policy & Practice in Intellectual Disabilities 2(3/4), 249-55.

Straetmans, J.M.J.A.A., H.M.J. van Schrojenstein Lantman-de Valk, F.G. Schellevis, G.J. Dinant (2007). Health problems of people with intellectual disabilities: the impact for general practice. British Journal of General Practice, 57:64-66.

Stegeman, I. (2006). Health Inequalities in the EU. TACKLING HEALTH INEQUALITIES IN THE EU: THE CONTRIBUTIONS OF VARIOUS EU-LEVEL ACTORS, pp 2-3. <www.eurohealthnet.eu>

Van Schrojenstein Lantman-de Valk HMJ, Linehan C, Kerr MP, Walsh PN (2007): Developing health indicators for people with intellectual disabilities. The method of the Pomona Project. Journal of Intellectual Disability Research, 51, 6, 427-434.

van Schrojenstein Lantman-de Valk HMJ, Walsh PN (in press): Managing health problems in persons with intellectual disabilities. British Medical Journal: In press.

Walsh PN, Kerr M.P, van Schrojenstein Lantman-de Valk HMJ (2003): Health indicators for people with intellectual disabilities: A European perspective. Eur J Public Health 13: 47-50; doi:10.1093/eurpub/13.suppl_1.47

Walsh, P.N., Linehan, C., Kerr, M., van Schrojenstein Lantman-de Valk, H., Buono, S., Azema, B., Aussilloux, C., Määttä, T., Salvador-Carulla, L., Garrido-Cumbrera, M., van Hove, G., Björkman, M., Ceccotto, R., Kamper, M., Weber, G., Heiss, C., Haveman, M., Jørgensen, F., & OFarrell, L., (2005). Brief Research Report Developing a set of health indicators for people with intellectual disabilities: Pomona Project. Journal of Policy and Practice in Intellectual Disabilities, 2, 3-4, 260-263.

World Health Organisation (2008) Mental Health Gap Action Programme mhGAPScaling up care for mental, neurological and substance use disorders WHO Geneva

World Health Organisation (2007). Atlas - Global Resources for Persons with Intellectual Disabilities WHO, Geneva

World Health Organisation (2001) International Classification of Functioning, Disability and Health. ICF WHO, Geneva

World Health Organisation (2000). Ageing and Intellectual DisabilityImproving Longevity and Promoting Healthy Ageing. Geneva: WHO

World Health Organisation (1992). The International Classification of Diseases, 10th Revision. Geneva, World Health Organisation.

 

8.2.1.8. Acronyms

 

DIS

Disability Interview Surveys (DIS)

EHSS

European Health Survey System)

HIS

Health Interview Survey

HES

Health Examination Survey

EUHSID

European Union Health Surveys Information Database

ICF

WHO’s International Classification of Functioning, Disability, and Health (2001).

WHO

World Health Organisation

 





8 See : www.pomonaproject.org



9 http://unstats.un.org/unsd/methods/citygroup/washington.htm