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.
e 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 epilepsy
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 countries – Ireland, for example
– record 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 traditionally
‘invisible’ 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 gender
– women 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 individuals’ social
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.
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.
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 Report – Pomona-2 Project: Submitted 30 June 2007).
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Emerson, E. (2005) Underweight, obesity and
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8.2.1.8. Acronyms
