People with intellectual disabilities
BMJ 2004; 329 doi: https://doi.org/10.1136/bmj.329.7463.414 (Published 19 August 2004) Cite this as: BMJ 2004;329:414All rapid responses
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I have entitled my response "Plugging the Gaps", because although the
previous articles go a long way to beginning to look at the issues around
the provision of healthcare for people with Intellectual Disabilities, it
is my experience that very few of the findings, recommendations, and
services, being developed for people with Learning Disabilities, are being
applied to people who are registered disabled with Learning Difficulties.
This particular group of patients appear to be falling between every
safeguard in place in today's NHS, and even where progress appears to be
underway for the Intellectually Disabled group at large, this does not
appear to affect the situation of people with Learning Difficulties.
Several studies have found that large numbers of adults with Learning
Difficulties have common health problems, which have not been addressed.
Wilson & Haire (1990) found that among 65 people with Learning
Difficulties, 80% had undetected health problems. Meehand, Moore &
Barr (1995) screened 191 adults with Learning Difficulties and found that
83% had undetected and treatable conditions. I would be interested to see
more up to date information on this, but could not obtain any in time for
this response.
There are a number of issues recorded in the literature, in relation
to problems with accessing health care services, for this group of people.
In many cases, neither Learning Disability services, nor mental
health services consider this group of patients to be appropriate for
referral, assessment or treatment. This includes voluntary sector services
like Mencap and Mind, and there are very few agencies, which deal
specifically with Learning Difficulties. Discussions I have had with
various adults with Learning Difficulties indicate that they are at a loss
as to where else they can turn for assistance or advice, as any existing
support groups are inevitably very small, fragmented, and have little
influence in professional circles.
My experience also indicates that GP's are at a loss as to where is
the most appropriate place to refer such patients. The end result of
which, is that even when medical problems are identified which require
specialist intervention due to Learning Difficulties themselves, GP's have
very few treatment options open to them for specialist attention. This in
turn leads to inappropriate referrals, and wasted NHS consultation time.
One example of such a gap, is the prevalence of substance abuse and
eating disorders (and obesity) among people with Attention Deficit
Disorder. It has been estimated that between 25 and 50% of adults with
ADD, use alcohol and other drugs, including food, to soothe their ADD
symptoms (Schubiner, Tzelepis, Isaacson, Warbasse III, Zacharek and
Musial, 1995; Martindale, 1995). However, adults with untreated ADD
symptoms are frequently assessed by mental health services rather than
specialist Learning Difficulty services in the UK, and it is alarmingly
common for these individuals to have five or more different diagnoses over
time, depending on which team is assessing them. This has obvious
implications for the consistency of their treatment, and the credibility
of their diagnoses.
Another issue, which affects the accessibility of services, is the
complexity of the health problems, which some people with learning
difficulties experience. There is also some evidence to suggest that they
are more likely to experience some physical and sensory problems, as well
as physical and mental health problems (Keywood, Fovargue, & Flynn;
Howells, 1997; Kerr et al,1996).
For those of us who are carers to such individuals, it is very
evident that this lack of healthcare services is not only affecting their
quality of life, but is significantly affecting the life expectancy and
productivity of this group of people.
References:
Howells, G (1997) A general practice. In O’Hara J & Sperlinger A
Eds. (1997) Adults with Learning Disabilities: A practical approach for
health care professionals. Wiley Publications.
Keywood, K. Fovargue, S. & Flynn, M. (1999) Best Practice?
Healthcare decision making by, with and for adults with learning
disabilities. National Development Team.
Martindale, M (1995) A Double Edged Sword. Student Assistant Journal.
Nov 1995: 1.
Meehan, S, Moore, G, and Barr, O. (1995) Specialist services for
people with learning disabilities. Nursing Times 91 (19) p 32-34.
Schubiner, Tzelepis, Isaacson, Warbasse III, Zacharek and Musial
(1995) The Dual Diagnosis of Attention Deficit/Hyperactivity Disorder and
Substance Abuse: case reports and literature review. The Journal of
Clinical Psychiatry, 56, No.4.
Wilson, D. and Haire, A (1990) Health care screening for people with
mental handicap living in the community. BMJ 301, p1379-1380.
Competing interests:
None declared
Competing interests: No competing interests
Having lived in a small, residential community for people with
intellectual disabilities from age 3 until after graduating from high
school, I was keen to learn the intricacies and differences of dealing
with this patient population from a healthcare perspective when I attended
physician assistant school. Alas, not one lecture addressed how to
provide responsible healthcare to patients with intellectual disabilities.
I was told to treat these patients just as I would any patients. However,
just the history taking can be drastically different and challenging and
may be compounded by the frequent sexual, physical, and emotional abuse to
which these patients are subjected. As mentioned in the article, many
aspects of providing healthcare to this population are drastically
different and complex. And healthcare providers will definitely be
exposed to this patient population. There was a significant gap in my
education as this important patient population was completely absent.
Competing interests:
Reared in Camphill Village, Copake, NY (residential community for people with intellectual disabilities)
Competing interests: No competing interests
Editor—This communication in response to the recent editorial by
Sally-Ann Cooper, Craig Melville and Jillian Morrison on people with
intellectual disability and health inequality (1).
Cooper et al write that, “ The amount of evidence relating to people
with intellectual disabilities is less than other groups” and “High
quality research needs to be supported to develop the evidence base.”
In recent years we have been flooded with dozens of health policy
documents highlighting the needs of children with intellectual
disabilities. Although these documents recognise that the physical and
emotional needs of these children are different from the rest of the
population yet little is known about the emotional and behavioural
problems in this deprived and disadvantaged group. Sub average
intelligence (intellectual disability) has traditionally been used as
exclusion criteria in most research studies. Neither the ICD-10
(International Classification of Diseases 10th revision) nor the DSM-IV
(Diagnostic Statistical Manual of Mental Disorders, fourth edition) give
adequate consideration to the diagnosis of psychiatric disorders in
children with intellectual disabilities. At one time, clinical lore
believed that children with intellectual disabilities did not suffer from
behavioural problems and that any inappropriate behaviour they displayed
was secondary to their mental handicap. This view is not supported by
current evidence and recent studies have shown that these children are
prone to emotional and behavioural problems (2). But often they are
underdiagnosed due to issues such as “diagnostic overshadowing”, the
tendency of clinicians to overlook additional psychiatric diagnosis once a
diagnosis of intellectual disability is made (3); or “masking” in which
the clinical characteristics of emotional and behavioural problems are
masked by a cognitive, language or speech deficit (4).
While available evidence suggests that emotional and behavioural
problems are more common among children with intellectual disabilities,
research has been hindered, as most studies in this group of children do
not use standardised diagnostic interviews and criteria. Also this sub-
group of children are excluded from virtually all aetiological and
treatment studies. This has ethical implications as not much is known
about the diagnosis and treatment in this group of children and hence they
are frequently undiagnosed and untreated.
The need to prevent further inequalities to these children is
important. Unfortunately most funding bodies and ethic committees are
reluctant to support research in children with intellectual disabilities
but attempts need to be made to promote high quality research in this
disadvantaged group.
REFERENCES
1. Cooper A-A, Melville C, Morrison J. People with intellectual
disabilities. Their health needs differ and need to be recognised and met.
BMJ 2004; 329:414-5.
2. Dekker MC, Koot HM. DSM-IV Disorders in children with borderline to
moderate intellectual disability. I: Prevalence and impact. Journal of
American Academy of Child and Adolescent Psychiatry 2003; 42(8): 915-922.
3. Reiss S, Levitan G, Szysko J. Emotional disturbance and mental
retardation: Diagnostic overshadowing. American Journal of Mental
Deficiency 1982; 86:567-574.
4. Fuller CG, Sabatino DA. Diagnosis and treatment considerations with
comorbid developmentally disabled populations. Journal of Clinical
Psychology 1998; 54(1): 1-10.
Competing interests:
None declared
Competing interests: No competing interests
EDITOR---This communication in response to the recent editorial by
Sally-Ann Cooper, Craig Melville and Jillian Morrison on people with
intellectual disability and health inequality (1).
More than 25 years have passed since the shift in care for people
with intellectual disability from institutional to community care (often
called de-institutionalization or normalization), but many gaps prevail in
many domains of the medical system and in the ideology of providing care
(2).
TRANSITION TAKING PLACE
We have not yet succeeded to overcome that kind of shift from
institution to community care and we are facing the new transition
characterised by aging, increased life expectancy and accumulation of
degenerative diseases and chronic illness characterising the general
population (3).
This increase in life expectancy contribute to the increasing number
of people with intellectual disability and the aging of this population
(4,5). If the population does not receice health surveillence these people
with intellectual disability will have a significant functional decline,
increase the burden of disease and demands more expensive resources with
higher cost due to high technology services (6). If this trend is expected
and measures taken to accomodate health promotion, screening and focus
shifted to a healthy life style, we would expect to have less disability
and dependence among people with intellectual disability (7) .
BURDEN OF DISEASE
Most of the burden of diseases in later life, much earlier in people
with disabilities than the general population could be caused in large
extent by chronic diseases and their consequences that causes functional
decline and decrease quality of life. Thus we need more screening, bigger
efforts to diagnose early, better compatile models for case management of
chronic diseases and prevention of complications and secondary diseases
caused by disability (8,9). It is known now that most of the disease
burden among people with intellectual disability is caused not by the
level of disability, but rather by the level of functional decline
accompanying it (10).
SERVICE MODELS
In order to have models of services addressing universal and unique
needs of this population, there is an imminent need for their inclusion,
not only in the community but also include them in trials and projects
addressing health promotion, screening, health education, use of
therapeutic and diagnostic measures. This should be done in order to avoid
adopting evidence from the population without intellectual disability to
this population, because there could be a danger as proved to be with
other parts of the society (11,12).
Policy makers are always worried about an increase in costs of
services, if there would be a shift to address needs and expectations of
this population with disability. This in spite of evidence that many of
the causes of morbidity and mortality leading to higher utilization of
services in this group are either curable or preventable and therefore an
investment in earlier age would show cost-benefit (13,14).
Socio-economic factors were found to be much more implicated in
health status and morbidity of people with intellectual disability than
the rest of the population, demanding interventions of other authorities
beside the medical community (15).
SUPPORT SYSTEMS
Supports of professional staff may be expensive (16), but does not
seem or was not proved to be better than informal support or support
offered by voluntary or other specific remedial communities, except for
the medical care in its narrow spectrum.
Finally, regarding the role of legislation to remove disparities in
health is not straightforward, but has to be coupled with a change of
attitudes in the public, professionals and policymakers and there has to
be a political clear agenda with the core of inclusion of people with
intellectual disability woven firmly into it.
AFFILIATION
Mohammed Morad, MD, is a family physician, the medical director of a
large area clinic in the city of Beer-Sheva, Israel. E-mail:
morad62@barak-online.net
Ilana Halperin, medical student, Faculty of Medicine and Dentistry,
University of Western Ontario, Canada. E-mail: ihalperi@uwo.ca
Aliza Shupac, political science student, Faculty of Arts, Department
of Political Sciences, McGill University, Montreal, Quebec, Canada. E-
mail: ashupac@hotmail.com
Joav Merrick, MD, DMSc is professor of child health and human
development, director of the National Institute of Child Health and Human
Development and the medical director of the Division for Mental
Retardation, Ministry of Social Affairs, Jerusalem, Israel.
E-mail: jmerrick@internet-zahav.net. Website: www.nichd-israel.com
REFERENCES
1. Cooper A-A, Melville C, Morrison J. People with intellectual
disabilities. Their health needs differ and need to be recognised and met.
BMJ 2004;329:414-5.
2. Aspray TJ, Francis RM, Tyrer SP, Quilliam SJ. Patients with
learning disability in the community. BMJ. 1999;318(7182):476-7.
3. Harwood RH, Sayer AA, Hirschfeld M. Current and future worldwide
prevalence of dependency, its relationship to total population, and
dependency ratios. Bull World Health Organ 2004;82(4):251-8.
4. Merrick J, Kandel I, Morad M. Health needs of adults with
intellectual disability relevant for the family physician.
ScientificWorldJournal 2003;3:937-45.
5. Patja K, Iivanainen M, Vesala H, Oksanen H, Ruoppila I. Life
expectancy of people with intellectual disability: a 35-year follow-up
study. J Intellect Disabil Res 2000;44( Pt 5):591-9.
6. Thyen U, Sperner J, Morfeld M, Meyer C, Ravens-Sieberer U. Unmet
health care needs and impact on families with children with disabilities
in Germany. Ambul Pediatrics 2003;3(2):74-81.
7. Harwood RH, Sayer AA, Hirschfeld M. Current and future worldwide
prevalence of dependency, its relationship to total population, and
dependency ratios. Bull World Health Organ 2004;82(4):251-8.
8. Jansen DE, Krol B, Groothoff JW, Post D. People with intellectual
disability and their health problems: a review of comparative studies. J
Intellect Disabil Res 2004;48(Pt 2):93-102.
9. Merrick J, Davidson PW, Morad M, Janicki MP, Wezler O, Henderson
CM. Older adults with intellectual disability in residential care centers
in Israel: Health status and service utilization. Am J Ment Retard
2004;109(5):413-20.
10. Carmeli E, Merrick J, Kessel S, Mashrawi Y, Carmeli V. Elderly
persons with intellectual disability: a study of clinical characteristics,
functional status, and sensory capacity. ScientificWorldJournal.
2003;3:298-307.
11. Rioux MH. Disability: the place of judgement in a world of fact.
J Intellect Disabil Res 1997;41( Pt 2):102-11.
12. Walmsley J. Involving users with learning difficulties in health
improvement: lessons from inclusive learning disability research. Nurs Inq
2004;11(1):54-64.
13. Conroy JW. The small ICF/MR program: dimensions of quality and
cost. Ment Retard 1996;34(1):13-26.
14. Emerson E, Robertson J, Gregory N, Hatton C, Kessissoglou S,
Hallam A, Knapp M, Jarbrink K, Walsh PN, Netten A. Quality and costs of
community-based residential supports, village communities, and residential
campuses in the United Kingdom. Am J Ment Retard 2000;105(2):81-102.
15. Fujiura GT. Continuum of intellectual disability: demographic
evidence for the "forgotten generation". Ment Retard 2003; 41(6):420-9.
16. Hallam A, Knapp M, Jarbrink K, Netten A, Emerson E, Robertson J,
Gregory N, Hatton C, Kessissoglou S, Durkan J. Costs of village community,
residential campus and dispersed housing provision for people with
intellectual disability. J Intellect Disabil Res 2002;46(Pt 5):394-404.
Competing interests:
None declared
Competing interests: No competing interests
Editor- I read with interest the editorial by sally Ann Cooper et al
and the responses.
The article clearly states the complexity of need in people with
intellectual disability and calls for action.
People with learning disabilities are amongst the most vulnerable and
socially excluded in our society. Very few have jobs, live in their own
homes or have choice over who cares for them. This needs to change: people
with learning disabilities must no longer be marginalised or excluded.
I have titled my response as 'Valuing People and Making Change
Happen'
Firstly, because I wish to draw attention to the important Department
of Health document 'Valuing people', this document sets out how the
Government will provide new opportunities for children and adults with
learning disabilities and their families to live full and independent
lives as part of their local communities.
The white paper 'Valuing People: A New Strategy for Learning
Disability for the 21st Century' was published in March 2001. It is the
first white paper on learning disability for thirty years and sets out an
ambitious and challenging programme of action for improving services.
The proposals in the white paper are based on four key principles:
civil rights, independence, choice and inclusion. Valuing People takes a
life-long approach, beginning with an integrated approach to services for
disabled children and their families and then providing new opportunities
for a full and purposeful adult life. It has cross-Government backing and
its proposals are intended to result in improvements in education, social
services, health, employment, housing and support for people with learning
disabilities and their families and carers.
and Secondly, because of the recent government report titled 'Making
Change Happen'. The Health and Social Care Act, 2001 states that the
Parliament should be provided a report on learning disability once a year
and 'Making Change Happen' was the first report to be published in 2003.
The good news is that this report points to the fact that things have
changed for the better since the key document 'Valuing People' was
published and this report lists ten areas where change is evident.
The other point that I wish to address is the aspect of need. The
editorial highlights the fact that People with learning disabilities and
mental health problems have complex needs and care should be provided
according to need. In this context it would be useful to note that the
assessment instrument, 'The Camberwell Assessment of Need for Adults with
Developmental and Intellectual Disabilities' (CANDID) can be used in
people with Intellectual disaility. This was developed by modifying the
Camberwell Assessment of Need (CAN) and this is a standardised needs-
assessment instrument for adults with learning disabilities and mental
health problems. The CANDID is a brief, valid and reliable needs
assessment instrument for adults with learning disabilities and mental
health problems.
The key message is the fact that there is lot of complexity and there
is a need for marriage between policy and practice, otherwise as stated in
the article there is the risk that guidelines can unintentionally increase
health inequalities.
References
1. Sally-Ann Cooper, Craig Melville, Jillian Morrison. People with
Intellectual disbilities. BMJ 2004;329:414-15
2.Xenitidis K. Thornicroft G. Leese M. Slade M. Fotiadou M. Philp H.
Sayer J. Harris E. McGee D. Murphy DG. Reliability and validity of the
CANDID-a needs assessment instrument for adults with learning disabilities
and mental health problems.British Journal of Psychiatry. 176:473-8, 2000
May
3.Department of health, Valuing People: A New Strategy for Learning
Disability for the 21st Century, March 2001
4.Department of Health,Making Change Happen, 2003
Competing interests:
None declared
Competing interests: No competing interests
EDITOR--- This communication in response to the recent editorial by
Sally-Ann Cooper, Craig Melville and Jillian Morrison on people with
intellectual disability and health inequality (1).
Last year was the European Year of People with Disabilities with many
activities in Europe in order to focus on this part of the population. The
first author participated in the historic event in late 2003 at the
graduation of ten physicians, who became the first specialists in
intellectual disability medicine in the world after three years of studies
under the guidance of professor Heleen Evenhuis, MD, who in the year 2000
became the first professor of intellectual disability at the Erasmus
University Medical Center in Rotterdam at the Department of Family
Medicine.
In connection with the graduation an invitational conference of
professionals from 12 different countries was held in Rotterdam about
health care for individuals with intellectual disabilities. The meeting
was organised by NVAVG (the Dutch Society of Physicians for persons with
Intellectual Disabilities, the MAMH (European Association of Intellectual
Disabilities Medicine) and the Erasmus Medical Center Department of
specialist training for physicians for people with intellectual
disabilities with the aim to finalise and accept a European Manifesto
about “Health care for people with intellectual disabilities”, maybe the
most vulnerable group of persons with disability (2).
We have also recently finished a major study on the health profile
and utilization of 2,282 adults with intellectual disability aged 40 years
and older living in residential care in Israel (3). Results showed that
age was a significant factor in health status with cardiovascular disease,
cancer and sensory impairment increased significantly with age for both
genders, cardiovascular disease in this population was less prevalent when
compared to the general population.
PEOPLE WITH INTELLECTUAL DISABILITY
People with intellectual disabilities are citizens of their country.
They have an equal right to be included in society, whatever their level
of disability.
People with intellectual disabilities have many gifts and abilities. They
also have special needs and they need a choice of services to support
their needs. People with intellectual disabilities have the same Human
Rights as other citizens. People with intellectual disabilities have the
right to equal participation in society. They must participate in all
decisions that concern their lives (Inclusion Europe).
In the manifesto below (2) the participants of the November 2003
Rotterdam Meeting regarded the Standard Rules on the Equalization of
Opportunities for Persons with Disabilities, as adopted by the United
Nations General Assembly, forty-eighth session, resolution 48/96, annex,
of 20 December 1993, as the political and moral foundation for this
special population. The Standard Rules have been developed on the basis of
the experience gained during the United Nations Decade of Disabled Persons
(1983-1992), taking in consideration the following documents:
1. The International Bill of Human Rights, comprising the Universal
Declaration of Human Rights
2.the International Covenant on Economic, Social and Cultural Rights
3.the International Covenant on Civil and Political Rights
4.the Convention on the Rights of the Child
5.the Convention on the Elimination of All Forms of Discrimination
against Women
6.the World Programme of Action concerning Disabled Persons
7. World Health Organization, International Classification of
Impairments, Disabilities, and Handicaps (Geneva, 1980) and the
International Classification of Functioning, Disability and Health (ICF)
(Geneva, 2001).
Informed consent is essential in the relationship between the health
professional and his client. Therefore, information for the client and his
family about diagnostic procedures and therapies should be in an easily
understandable format. People with intellectual disabilities and their
representatives should influence all decisions about healthcare at every
level of healthcare organisation.
In this document or manifesto below the word ‘health’ is defined by
the World Health Organisation: “Health is a state of complete physical,
mental and social well-being and not merely the absence of disease or
infirmity.”
MANIFESTO ABOUT THE BASIC STANDARDS OF HEALTH CARE FOR PEOPLE WITH
INTELLECTUAL DISABILITIES
The following criteria should be universally recognised and accepted
as basic standards of adequate health care for individuals with
intellectual disabilities.
1. Optimal availability and accessibility to mainstream health
services with primary care physicians playing a central role. This means
that people with intellectual disabilities will:
a. Use mainstream health services.
b. Receive more time for consultations in the clinic or in home
visits, when needed.
c. Receive adequate support in communication, when needed.
d. Receive a proactive approach to their health needs.
e. Have no extra financial, physical or legislative barriers to use
mainstream services.
f. Be able to participate in screening programmes, in the same way as
anybody else.
g. Be supported in achieving and maintaining a healthy lifestyle that
will prevent illness and encourage positive health outcomes.
h. Receive understandable information about health and health
promotion (also available to family and carers).
i. Receive healthcare with good co-operation and co-ordination
between different professionals.
2. Health professionals (especially physicians, psychiatrists,
dentists, nurses and allied professionals) in mainstream health services
will have competencies in intellectual disabilities and therefore in some
of the more specific health problems of people with intellectual
disabilities. This will require that:
a. Health professionals have a responsibility to achieve competencies
in the basic standards of health care for people with intellectual
disabilities.
b. These competencies, include the awareness, that not all the health
problems of people with intellectual disability are caused by their
disability.
c. All training programs for health professionals pay attention to
intellectual disabilities, including the most common etiology, some
frequent syndromes, etiology-related health problems, communication, legal
and ethical aspects.
d. Training in attitude and communicational skills is as important as
clinical skills and therefore is part of the training programs.
e. Guidelines on specific health issues are available through
Internet, CD-ROM or otherwise.
f. Health care professionals in mainstream services have easy access
to and are able to get advice from specialist colleagues without extra
financial, practical or legislative barriers.
3. Health professionals (physicians, psychiatrists, dentists, nurses
and allied professionals) who are specialised in the specific health needs
of individuals with intellectual disabilities are available as a back-up
to mainstream health services. These professionals can advise, treat
specific medical problems or take over (a part of) the medical care for
people with intellectual disabilities. This will require that:
a. Training Programmes are available for health professionals who
want to gain competencies in health issues of people with intellectual
disabilities.
b. These specialists create and maintain networks with specialised
colleagues in and outside of their own profession, in order to improve
their knowledge and skills. This can be achieved by personal contacts or
by creating (virtual) centres of expertise.
c. Research on health issues of people with intellectual disabilities
is stimulated in co-operation with academic centres. Academic Chairs in
Intellectual Disability Medicine should be created to initiate, stimulate
and co-ordinate research projects.
4. Health care for individuals with intellectual disabilities often
needs a multidisciplinary approach.
a. Specific health assessments and/or treatments need co-ordination
between different health professionals (eg. visual and hearing impairment,
mental health care, care for people with multiple and complex disability,
care for the elderly, rehabilitation care).
b. Specialist training for nurses and other carers is stimulated.
This includes learning how to support and care for people with
intellectual disabilities who have for instance sensory impairments,
autistic spectrum disorders, epilepsy, mental health problems, behavioural
/ forensic problems, physical and complex disabilities, swallowing and
feeding problems and age related problems.
5. Health care for people with intellectual disabilities needs a pro-
active approach.
a. Participation in national screening programmes should be
encouraged.
b. Anticipating health investigations on visual and hearing
impairments and other frequent health problems should be evidence based
and routinely available.
c. General and specific health monitoring programmes are developed
and implemented. In the development of Health Indicator Systems special
attention is paid to people with intellectual disabilities.
d. Responsibility for the development of anticipating investigation
programmes and for their implementation must be clarified (primary care
physicians, Public Health Doctors or specialised physicians).
e. People with intellectual disabilities and their families have a
right to aetiological investigations.
We hope that the above goals for the population of children,
adolescents and adults with intellectual disability or for that matter any
disability will be fulfilled in the coming years with many countries
following the good example of Holland.
AFFILIATION
Joav Merrick, MD, DMSc is professor of child health and human
development, director of the National Institute of Child Health and Human
Development and the medical director of the Division for Mental
Retardation, Ministry of Social Affairs, Jerusalem, Israel.
E-mail: jmerrick@internet-zahav.net. Website: www.nichd-israel.com
Mohammed Morad, MD, is a family physician, the medical director of a
large area clinic in the city of Beer-Sheva, Israel. E-mail:
morad62@barak-online.net
Isack Kandel, MA, PhD is a senior lecturer at the Faculty of Social
Sciences, Department of Behavioral Sciences and Social Work, Academic
college of Judea and samaria, Ariel, Israel.
E-mail: Kandeli@aquanet.co.il
Søren Ventegodt, MD, is a general practitioner and the director of
the Quality of Life Research Center in Copenhagen, Denmark.
E-mail: ventegodt@livskvalitet.org Website: www.livskvalitet.org/
REFERENCES
1. Cooper A-A, Melville C, Morrison J. People with intellectual
disabilities. Their health needs differ and need to be recognised and met.
BMJ 2004;329:414-5.
2. Carpenter S, Meijer M, Scholte F. European Manifesto on basic
standards of health care for people with intellectual disability.
Rotterdam: Erasmus Med Center, 2003.
3. Merrick J, Davidson PW, Morad M, Janicki MP, Wexler O, Henderson
CM. Older adults with intellectual disability in residential care centers
in Israel: Health status and service utilization. Am J Ment Retard
2004;109(5):413-20.
Competing interests:
None declared
Competing interests: No competing interests
Cooper et al write that, “People with intellectual disabilities
comprise about 2% of the UK population”, and, “Their health needs differ
and need to be recognised and met.”
Within this broad epidemiological brushstroke, there lie some
patients who have particular problems that make their situation worse.
Included within that number are those with early-acquired brain
damage, those with autism or autistic syndrome and those who have little
or no speech. Many of these will be non-autonomous. They will not be able
to adequately describe their symptoms or even recognise that what they are
feeling are symptoms.
The authors go on to write that, “This contributes to ongoing health
inequality, chronic ill health, and premature death. Many biological,
psychological, social, and developmental factors, as well as life
experience, contribute to this inequality. People with intellectual
disabilities also experience access barriers in using health services.”
It is apparent to those of us who have family members in this
category of patient just how difficult it is for GPs to doctor effectively
for such patients who live away from home. Thus many patients in this
category will suffer because they are unable to express themselves in a
way that promotes good health care.
Another important factor for, “people with intellectual
disabilities”, is that some of them are continuously under the regimen of
psychiatrists because they have spent some of their lives in ‘mental
handicap’ hospitals. This is an oppressive regime and one that is
difficult to understand. For those with autism or brain damage,
psychotropic drugs can do more harm than good. Because they are non-
autonomous and cannot complain they have to suffer this oppression and
that causes more health problems. One particular reason for this is that
the side effects of these drugs are suffered silently. Most counties now
have a learning disability service, but the psychiatrist dominates even
that service.
When family members try to intervene, even though they know their
relative better than anyone, they are rebuffed. This rebuff will probably
come with a suggestion that because the relative is non-autonomous the
medical fraternity has control and the relative none.
Again the authors write, “The amount of evidence relating to people
with intellectual disabilities is less than for other groups, hence
relevant issues are unlikely to be selected for development of
guidelines.” This could be remedied, in part, by involving family members
more than is done presently.
The UK Disability Discrimination Act 1995, and the Human Rights Act
1998, are not usually brought into play unless the family member
contemplates legal action. It is of course the case that, “... these laws
require services to make reasonable adjustments and accommodations”; and,
“... the reality is that legislation does not yet seem to have translated
into improved health status for people with intellectual disabilities”.
Competing interests:
Father of daughter with intellectual disabilities
Competing interests: No competing interests
Efforts to address the health needs of people with intellectual disabilities are hampered by the ‘hidden’ population
Editor – Recent contributions to the BMJ have highlighted the
significant challenges faced by people with intellectual disabilities.
Cooper et al (1) highlight the fact that the health needs of people with
learning disabilities are known to differ from the rest of the population;
they have lower life expectancy and face unique barriers in using health
services. Cooper et al (1) conclude that the population of people with
intellectual disabilities require specifically targeted public health
interventions.
More recently, Cornwell (2) emphasized that people who are registered
with learning difficulties are falling through the net in the NHS. We
believe that the problem is even more serious. We suggest that efforts to
address the health needs of people with intellectual disabilities are
hampered by the problem of the ‘hidden’ population.
According to the 2001 White Paper (3), there are approximately
210,000 people with severe learning disabilities in England, as well as
1.2 million people with mild to moderate disability (4), amounting to a
prevalence of about 2% of the general population. However, as noted by
Whitaker and Porter (5), the vast majority of this population is unknown.
Nationally, Whitaker and Porter (5) calculate that there are over one
million people with a learning disability whom learning disability
services are not aware of. More recently, Whitaker calculated that 88% of
the people who are supposed to be provided with a service are not known
about (6). These calculations are based on estimates; no complete
register exists of people with learning disability.
Our own ongoing research, carried out with the assistance of Essex
County Council Learning Services and supported by Colchester Primary Care
Trust, aims to reach the hidden population of people with learning
disabilities (7). To date, we have contacted a group of young adults who
had been given a Statement of Special Education Needs (SEN) for non-
specific learning difficulty, or autism whilst in school. Of the 102
respondents, 37% indicated they had not been helped by any organisation,
including Colchester’s Health or Social Services learning disability
teams, since finishing school. Although this was a small-scale study, we
believe that it demonstrates how rapidly people who had previously been in
receipt of a range of specialist support services can become lost to view.
This group represents but one small section of the hidden population.
Cooper et al (1) are correct in stating that the population of people
with intellectual disabilities require specifically targeted public health
interventions. However, any such interventions will only benefit a small
minority until steps are taken to address the problem of the hidden
population of people with intellectual disabilities.
Fernando De Maio, co-ordinator, Essex Research and Development
Support Group.
Department of Health and Human Sciences, University of Essex
(fdemai@essex.ac.uk)
Dan O’Neill, teaching fellow.
Department of Health and Human Sciences, University of Essex
(doneila@essex.ac.uk)
References
1. Cooper SA, Melville C, Morrison J. People with intellectual
disabilities: Their health needs differ and need to be recognized and met.
British Medical Journal 2004;329:414-415.
2. Cornwell KL. People with intellectual disabilities: People
registered disabled with learning difficulties tend to fall through the
net. British Medical Journal 2004;329(7471):917.
3. Department of Health. Valuing People: A New Strategy for Learning
Disability for the 21st Century. London: Department of Health, 2001.
4. Martin G. 'Valuing People' - a new strategy for learning
disability for the 21st century: how may it impinge on primary care?
British Journal of General Practice 2001;51(471).
5. Whitaker S, Porter J. Letter to the editor: Valuing People: a New
Strategy for Learning Disability for the 21st Century. British Journal of
Learning Disabilities 2002;30:133.
6. Whitaker S. Hidden learning disability. British Journal of
Learning Disabilities 2004;32(3):139-143.
7. De Maio FG, O'Neill D. The hidden population of people with
learning disability: an example of integration or a major unmet need?
Essex Primary Care Research Network 1st Annual Conference. Chelmsford,
England, 2004.
Competing interests:
None declared
Competing interests: No competing interests