Vol.
1,
núm.
2Julio
2002
Revista Internacional On-line / An International On-line Journal
Equity for people with mental retardation suffering from psychiatric
disorders.
Dr. José Guimón
Correspondencia:
E-mail: Jose.Guimon@hcuge.ch.
Resumen
Los pacientes que tinen a la vez retraso mental y trastornos psiquiátricos están particularmente en riesgo
de explotaciones de todo tipo y frecuentemente no reciben la asistencia legal que requieren.
El tratamiento de pacientes con diagnóstico doble (trastorno mental y retraso psíquico) es
particularmente difícil desde el punto de vista de los derechos humanos, per ejemplo en lo que concierne
a la voluntariedad de las intervenciones.
Las recomendaciones de los organismos internacionales insisten en la protección de los jóvenes y las
mujeres con retraso nmental y problemas psíquicos, que deben ser alojados en instituciones especiales.
Palabras clave: Retraso mental. Diagnóstico doble. Derechos humanos.
Summary
Patients with mental retardation and psychiatric disorders are particularly endangered by physical, sexual
and other forms of exploitation and frequently do not receive adequate legal assistance when needed for
questions such as incapacity; information about their rights, etc.
Some recommendations made by international organizations have shown special concern about the
treatment of mental patients being particularly difficult to assure for patients with mental retardation,
as , for example, that treatment should be " based on a plan discussed with the patient ".
On the other hand, dual diagnosis is a risk factor for re-institutionalization, for treatment in institutional
settings, for restrictions on care in the community and for a less frequent use (or lack) of
psychotherapies.
International recommendations to protect juveniles from all forms of physical or mental violence are
especially relevant for juveniles with mental retardation .. Specifically, these recommendations estate
that these patients should be treated in specialized institutions and that in such places where juveniles
are detained, a record of mental health problems should be kept and mental health care should be
assured, all of which is frequently overlooked in regard to patients with mental retardation are concerned.
Finally, it must be taken into account that women with mental retardation, especially if they have a
psychiatric diagnosis or are in psychiatric treatment, are particularly prone to be subject to abusive "
eugenic " practices
Key words: human rights. mental retardation. Dual diagnosis
1. ORGANIZATIONS DEALING WITH ISSUES OF THE HUMAN RIGHTS OF PEOPLE WITH MENTAL
DISORDERS
Questions concerning the relationship between health and human rights are summarily addressed in
various international documents. There exist two main international documents specifically dealing with
the human rights of mental health patients: the " U.N. Principles for the Protection of Persons with Mental
Illness and the Improvement of Mental Health Care " (1) and the " Recommendation on the Situation of
the Mentally Ill " of the Council of Europe (2). These declarations consider the principal issues of
controversy in the realm of ethics and their application to psychiatric care.
On the other hand, the question of the protection of the human rights of people with mental retardation
is an issue which is being addressed by international organizations such as the United Nations (3-7), the
European Community (8-9) and the World Health Organization. In some documents written by
professional associations such as the World Psychiatric Association and the American Psychiatric
Association, references are also made to these persons. Moreover, patient and family advocacy groups
and some private foundations (the Geneva Initiative on Psychiatry (10), the Association pour les droits de
l'homme en psychiatrie (11), the Bazelon Center for Mental Health (12), the Harvard Institute for Health
and Human Rights (13) as well as several journals (Health and Human Rights, Journal of the Association
for the Severely Handicapped, European Journal on Mental Disability, etc.)) make of the rights of
mentally handicapped people an important focus of concern.
Some important events in advocacy in this respect were the creation of the American Association for
Mental Retardation (AAMR, 1876), the ARC/USA (1954, originally the Association for Retarded Children),
the American National Association for the Dually Diagnosed (NADD), the European Association for Mental
Health in Mental Retardation (MHMR) and the publication of the Mental Retardation Planning
Amendments (USA 1963) and the American Psychiatric Association statement (1966). Legislation
advocating the human rights of persons with mental retardation include the U.S. Rehabilitation Act
(1973), the U.S. Individuals with Disabilities Education Act (IDEA) (1975, reauthorized 1990), the UK
Disabled Persons Act (1987) and, of course, the Americans with Disabilities Act (ADA) (1990).
2. SOME SENSITIVE ISSUES CONCERNING THE HUMAN RIGHTS OF PEOPLE WITH MENTAL
RETARDATION AND MENTAL DISORDERS
2.1. Fundamental Freedoms and Basic Rights
Several international documents refer to the need to protect the fundamental freedoms of mental
patients in general areas such as dignity, responsibility, autonomy, to assure civil, political, economic,
social and cultural rights and to oppose discrimination, loss of liberty, etc. This is necessary because,
effectively, mental patients suffer from negative attitudes and from inequality in the delivery of medical
and psychiatric services. In addition, patients with mental retardation and psychiatric disorders are
particularly endangered by physical, sexual and other forms of exploitation and do not receive legal
assistance when needed on questions such as incapacity, information about their rights such as that to
nominate a person to act on their behalf, etc.
International recommendations to protect juveniles from all forms of physical or mental violence (14) are
especially relevant for juveniles with mental retardation who are particularly liable to being deprived of
their human rights or seeing them abused. Specifically, these recommendations established that these
patients should be treated in specialized institutions and that in such places where juveniles are detained,
a record of mental health problems should be kept and mental health care should be assured, all of which
is frequently not observed insofar as patients with mental retardation are concerned.
Similarly, a significant percentage of criminal offenders are people with mental retardation and it is
indispensable to pay particularly close attention to the respect of their rights as they are protected by
international declarations (15). Included herein must be the assurance that an insane person cannot be
held responsible for criminal actions ; a redefinition of some basic concepts such as "dangerousness" in
such persons ; a reduction to a minimum of the practice of compulsory detention for an indeterminate
period. In addition, the assurance that persons declared insane by the judiciary be placed under the
jurisdiction of medical authorities, must be safeguarded.
2.2. Restrictions on Liberty
Several international documents regulate the non-voluntary hospitalization of mental patients in general,
listing several prerequisites to be fulfilled : the person must be considered to be a serious danger to himor herself or to other persons, strict procedural guidelines must be respected and hospitalization must be
limited to a short period, etc. Some of the recommendations are especially important for people with
mental retardation, e.g. the requirement that the decision be communicated to the patient; that a judicial
body review periodically the case; that the patient have the right to choose counsel and ask for an
interpreter or adviser.
2.3. Diagnosis
The international classifications of mental disorders do not sufficiently specify the meaning of "mental
retardation" and the operational criteria for the diagnosis of mental retardation most utilized limit
themselves to evaluating the presence of a low-level of intelligence (a criterion that has frequently
changed over the years), some deficits in adaptive behavior and the appearance of these difficulties
during the developmental period. On the basis of these criteria, some epidemiological studies show an
average worldwide prevalence of mental retardation of approximately 4%. The most reliable source of
data is the United Nations' Statistics on Special Population Groups (1990) (16) which compiles statistics
on the prevalence of disability in 55 countries although it is subject to the vagaries of differences in
definition used from country to country, and the relative unreliability of determination in many of them.
In relation to dual diagnosis, i.e. the existence of both mental retardation and psychiatric symptoms,
around 25% of all persons with mental retardation are affected, thus giving, for example, a population
calculated to be approximately 625,000 for the USA, 17,000 for Switzerland or 96,900 for Spain in 1991
(17).
In trying to make a psychopathological evaluation of people with mental retardation, on the other hand,
there are multiple sources of error (18): "intellectual distortion" leading to poor communication,
"psychosocial masking" and "overshadowing" of some psychiatric disorders that can be thus
underestimated, stress-induced "cognitive disintegration" that could be mistaken for psychotic
syndromes, etc. Additionally, developmentally normal phenomena (imaginary friends, talking to oneself,
etc.) can be misinterpreted. These biases can be partially avoided by using certain evaluation
instruments such as the American Psychiatric Assessment Schedule or the PAS-ADD (19) (Moss et al.,
1993).
The first ethical requirement towards persons with mental retardation is to avoid these biases in
diagnosis which are seriously detrimental to treatment. On the other hand, in order to avoid abuses in
"labeling", the international documents state that psychiatric diagnosis should only be undertaken if the
following conditions are respected : that the goal of diagnosis be for purposes accepted by domestic law ;
that internationally accepted medical standards be observed ; that non-conformity and past treatment
shall never be determining factors in diagnosis.
2.3. Treatment
Several international organizations have shown special concern that the treatment of mental patients be
of the highest quality, the least intrusive, voluntary as far as possible, in accordance with ethical norms,
dispensed in the least restrictive environment as close as possible to that of normal life and, when
applicable, in the community. Some recommendations are particularly difficult to assure for patients with
mental retardation such as that treatment should be "based on a plan discussed with the patient".
On the other hand, dual diagnosis is a risk factor for re-institutionalization, for treatment in institutional
settings, for restrictions on care in the community and for a less frequent use (or lack) of
psychotherapies.
Finally, it must be taken into account that women with mental retardation, especially if they have a
psychiatric diagnosis or are in psychiatric treatment, are particularly prone to be subject to abusive
"eugenic" practices (20).
All the safeguards against abusive research practices are similar to those applicable to other patients, but
in the case of patients with mental retardation and psychiatric problems, some are more difficult to
monitor : such as the need for informed consent and the right of the patient to freely withdraw consent
at any time. If the patient does not have the capacity to give consent, the intervention may only be
carried out with the authorization of his/her representative or an authority provided for by law. Informed
consent must be obtained before presenting a patient to a class and, if possible, also when a case-history
is released for scientific publication.
2.4. Rights and Conditions in Mental Health Facilities for Persons with Mental Retardation
Different international documents provide guidelines on the conditions which should be present in mental
health centers : the center should dispose of qualified staff whose work is inspected on a regular basis;
there must exist a socio-professional rehabilitation program enabling the patient's occupation and
ensuring that their labor is not being exploited. The patient may request and produce at any hearing an
independent mental health report; copies of the records shall be given to the patient; the right of the
patient to make a complaint and request a hearing should be assured. These recommendations are
frequently more difficult to monitor for persons with mental retardation.
In fact, psychiatric services for persons with mental retardation have been frequently accused of having
an inadequate range of services, a lack of coordination and a questionable quality of care.
While one rationale for institutionalization is that such settings are safer than community living
arrangements, many institutional settings have placed disabled people at greater risk of abuse. Jacobson
and Richardson (21) report that 81 out of 100 women admitted to psychiatric care had a history of major
physical or sexual abuse prior to admission. The majority of victims (about half) had been assaulted on "
many " (more than 10) occasions. Only one-fifth of assaults were reported as single offenses. There is
evidence that the risk of sexual abuse for institutionalized women with disabilities is from two to four
times greater than if living in the community and that the risk of abuse increases with the level of
disability. Most of the risk of abuse comes not from within the family, but from outside the home. In point
of fact, revelations about the prevalence of physical and sexual abuse in institutionalized settings
constituted a determining factor contributing to the closure of such institutions. Part of this problem is
associated with the number of different caregivers who pass through institutions, and who therefore feel
little personal accountability to the people for whom they work. A study in the United States, for
example, found that the average annual staff turnover was about one-third in public residential facilities
and over 50% in private residential facilities. Similarly, a report from the Mental Health Act Commission
in Britain highlighted issues on overcrowded wards, bed shortages, lack of trained staff and inadequate
management.
3. PARITY, MADNESS AND MENTAL RETARDATION
3.1. General Causes of Inequity in Health Care
Articles 1 and 2 of the UDHR state that " all people are born equal in dignity and rights " and that these
rights are guaranteed for everyone. However, it is well known that apartheid, genocide, deprivation of
freedom (in prisoners, immigrants) but also some other more subtle forms of discrimination (religious,
racial, sexual, political, socio-economic) (22), hamper access to care. Stigmatization of mental patients
has this same discriminatory effect. That is the reason why several international documents underline
that mental patients have the rights to have access to a mental health facility in the same way as they
would to any other facility ; to protection against discrimination on the grounds of mental illness ; to
receive the same standards of treatment as any other sick person ; to be treated if possible on a
voluntary basis in outpatient facilities without hospitalization ; to be treated in the community in an
atmosphere suited to his or her cultural background ; not to be discriminated against. However, the fact
is that dignity and equal rights are unevenly protected (23) insofar as questions of mental health are
concerned. Historically stigmatization of the mentally ill resulted in a risk of denial of access to
appropriate treatment or subjection to inappropriate clinical intervention or unwarranted long-term
institutionalization. On the other hand, persons with mental retardation suffer from the double
discrimination attached to each of the two diagnoses.
But discrimination frequently seeks justification in biological determinism that contends that gender,
racial labels or diagnoses such as mental retardation, explain all disparities in health, income,
employment, educational achievement or family structure. This bias can only be overcome if equity is
considered to be a search for fairness, for social justice, taking into account an attempt to 'level the
playing field', in the same sense that legislation has been enacted in the United States to promote
measures of 'Affirmative Action' (24).
3.2. Inequity in Relation to Psychiatric Care
3.2.1. Discrimination
The World Health Organization's International Classification of Impairments, Disabilities and Handicaps
(ICIDH) (1980) distinguishes among the terms " impairment " (any loss or abnormality of psychological,
physiological, or anatomical structure or function), " disability " (any restriction or lack, resulting from an
impairment, of the ability to perform an activity in the manner or in the range considered within human
norms) and " handicap " (a disadvantage for a given individual, resulting from an impairment or disability
that limits or prevents the fulfillment of a role that is normal, depending on age, gender, social and
cultural factors, for that individual). There is at present some debate within the disability movement on
the use of these terms (25. 26). One point of contention is that these definitions still place the burden of
responsibility on the individual, when in fact much of the problem is societal and environmental. A second
is that the terms " impairment " and " disability " often are used interchangeably, and therefore one
should be dropped.
A distinction has also been made between "direct discrimination", which means treating people less
favorably than others because of their disability; "indirect discrimination" which means imposing a
requirement or condition for a job, facility or service which makes it harder for disabled people to gain
access to it and "unequal burdens" which means failing to take reasonable steps to remove barriers in the
social environment that prevent disabled people from participating equally.
The first concern of psychiatry in public health is of course the assurance of the best quality in psychiatric
care. In this sense, during recent years, confronted with a policy of cost containment, most advocacy
groups focused mainly on demanding "parity" for psychiatric patients, i.e. calling for the rights of mental
patients to receive treatment equal to that granted to persons suffering from physical illness. In effect,
currently, discrimination against the mentally ill persists worldwide both in the public health-care system
and in the private sector insofar as reimbursement of hospitalization and outpatient treatment are
concerned, either in relation to the length of stay or the number of interventions permitted. Health
insurance associations criticize the legislation proposed in this respect in various countries fearing
spiraling costs, despite the existence of studies showing that an increase in mental health coverage would
be counterbalanced by a decrease in expenditure for other medical treatments and for incapacity derived
from certain psychiatric illnesses.
The Oviedo Convention of the Council of Europe on Human Rights and Biomedicine (27) speaks about "
equitable access to health care ". The Declaration of Hawaii (28) is also concerned with the common good
and a just allocation of health resources. The APA is also looking into questions of abuse by managedcare organizations of psychiatry and into those touching on parity (International Commission for Parity,
American Psychiatric Association), and has recently published a recommendation that the United States
Congress enact certain legislated standards to protect the rights of patients against certain abusive
managed-care practices.
3.3. Persons with Disabilities
When speaking of equity and while seeking to avoid discrimination, differentiation must also be
demanded, in the sense of seeking to ensure the right to equal treatment of disadvantaged persons.
Differentiation, however, becomes discriminatory when its purpose or effect is to deny or restrict the
equal enjoyment of human rights.
Apart from being a condition inherent in a person, disability is, to a large degree, based on societal
attitudes . There is empirical evidence of discriminatory practices towards disabled people in the areas of
access to education; meaningful participation in the labor force and in the statistics on physical and
sexual abuse. Promoting and protecting the rights and dignity of disabled people require legal
approaches, diminishing societal barriers, and modifying negative attitudes towards disability.
The United Nations called attention in 1982 to the fact that more than 500 million people in the world are
disabled as a consequence of mental, physical or sensory impairment. They are entitled to the same
rights as all other human beings and to equal opportunities. Too often their lives are handicapped by
physical and social barriers in society which hamper their full participation. Because of this, millions of
children and adults in all parts of the world often face a life that is segregated and debased.
Disability, from a medical perspective, was seen as a " deficit " inherent in the person with an impairment
that could be eventually cured following successful intervention. This approach did not recognize the
possibility of potential adaptations of the patient and undervalued the importance of physical
environment and social attitude towards the experience of disability. Disability was then redefined as a
statistical deviance from the norm, redefining social attitudes and situating disabled people within the
normal range of human experience, when disabled people themselves began speaking about their issues
in terms of rights. Finally, disabled people began advocating for their own human rights, identifying
environmental and social barriers as forms of discrimination requiring a response based on social justice.
The issue became one of social oppression. Disabled people must be treated by society as " equal in
dignity and rights " (UDHR). Differences in mental capability can be accommodated without
discrimination. Promoting and protecting the rights and dignity of disabled people will require a
combination of : legal approaches ; attention to the concrete realities of disability ; removing societal
barriers ; modifying the perception of, and cultural attitudes towards, persons with disabilities.
References
1. The U.N. Principles for the Protection of Persons with Mental Illness and the Improvement of Mental
Health Care (1991).
2. The Recommendation on the Situation of the Mentally Ill of the Council of Europe (1977).
3. General Assembly of the United Nations, Resolution 2856/XVI, Declaration on the rights of mentally
retarded persons (20th December 1971).
4. General Assembly of the United Nations, Resolution 3447/XXX, Declaration on the rights of disabled
persons (9th December 1975).
5. General Assembly of the United Nations, Resolution 48/95, Standard rules on the equalization of
opportunities for persons with disabilities (20th December 1993).
Committee on Economic, Social and Cultural Rights, General Comment on People with Disabilities, UN
Doc. E/C. 12/1993/WP.13 (25 November 1994)
6. Degener, T., Koster-Dreese, Y. (eds) Human Rights and Disabled Persons (Dordrecht : Martinus Nijhoff
Publishers), 1995
7. Hannum, H. : " The HUDHR in National and International Law ", Health and Human Rights Vol 3, No. 2,
145-160
8. The report on the protection of human personality and its physical and intellectual integrity, in the light
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9. Hendriks, A., Degener, T., " The Evolution of a European Perspective on Disability Discrimination ",
European Journal of Health Law 1 (4) (1994) :343-366
10 " Geneva Initiative on Psychiatry "
11. " Association pour les droits de l'homme en psychiatrie "
12. Bazelon Center for Mental Health Law : bazelon@tidalwave.net
13. "The François-Xavier Bagnoud Center for Health and Human Rights " at the Harvard School of Public
Health
14. Molnar, B.E. : " Juveniles and Psychiatric Institutionalization : Toward better due process and
treatment review in the United States ", Health and Human Rights, vol. 2, n. 2, 98-117 (1997)
15. WPA Interventions (known as the Daes Report) in the Working Group, established by the Economic
and Social Council on " The question of persons detained on the grounds of mental health or suffering
from mental disorder " (1983)
16. Compendium Statistics on Special Population Groups, Series Y, No. 4. Author, Department of
International Economic and Social Affairs Statistical Office : New York, 1990, 342 pp.
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18. Sovner, R.: Limiting factors in the
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22. Geiger, H.J. : " Inequity as Violence: Race, Health and Human Rights in the United States ", Health
and Human Rights, vol. 2, no. 3, pp 7-13.
23. Neufeldt, A. and R.Mathieson : Empirical Dimensions of Discrimination against Disabled People,
Human Rights and Health
24. Alleyne, G.A.O. : " Health and Human Rights: the Equity Issue " Health and Human Rights, vol. 2, no.
3, pp 65-71
25. Hahn, H., " Towards a politics of disability : definitions, disciplines and politics ", The Social Science
Journal 22 (4) (1985) : 87-105.
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27. The Covenant of the Council of Europe on Human Rights and Bio-medicine (Articles 25 and 27)
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28. The World Psychiatric Association, Declaration of Hawaii (1983)
ASMR Revista Internacional On-line - Dep. Leg. BI-2824-01 - ISSN (en trámite)
CORE Academic, Instituto de Psicoterapia, Manuel Allende 19, 48010 Bilbao (España)
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