Intended for healthcare professionals

Editorials

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;329:414

People with intellectual disability, health needs and policy

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

20 August 2004
Joav Merrick
Medical director
Mohammed Morad, Isack Kandel, and Søren Ventegodt
Division for Mental Retardation, Ministry of Social Affairs, POBox 1260, IL-91012 Jerusalem, Israel