What are key terms related to mental disability and human rights?

Glossary

A variety of terms is used in human rights and patient care work. Where noted, these definitions come from the World Health Organization (WHO).

A

Acceptability
One of four criteria set out by Committee on Economic, Social, and Cultural Rights by which to evaluate the right to the highest attainable standard of health. Acceptability: means that all health facilities, goods and services must be respectful of medical ethics, culturally appropriate, sensitive to gender and life-cycle requirements, as well as designed to respect confidentiality and improve the health status of those concerned (General Comment 14). See also “Adequacy,” “Availability,” and “Quality.”

Accessibility
One of four criteria set out by Committee on Economic, Social, and Cultural Rights by which to evaluate the right to the highest attainable standard of health health. Accessibility: means that health facilities, goods and services have to be accessible to everyone without discrimination. Accessibility has four overlapping dimensions: non-discrimination, physical accessibility, economic accessibility (affordability), and information accessibility (General Comment 14). See also “Acceptability,” “Adequacy,” and “Quality.”

Availability
One of four criteria set out by Committee on Economic, Social, and Cultural Rights by which to evaluate the right to the highest attainable standard of health. Availability: means that functioning public health and health care facilities, goods, and services, as well as programmes, have to be available in sufficient quantity. This should include the underlying determinants of health, such as safe drinking water, adequate sanitation facilities, clinics and health-related buildings, trained medical personnel, and essential drugs (General Comment 14). See also “Acceptability,” “Accessibility,” and “Quality.”

B

Basic needs
Used largely in the development community to refer to basic health services, education, housing, and other goods necessary for a person to live.

C

Community-based services
These are the range of services and support that help people with disabilities, including people with mental disabilities, live with their families or friends and engage in community life (such as go to school or work and enjoy leisure activities). Work with small children (early intervention), day services, the provision of independent living skills (such as being taught how to cook and manage personal finances), and supported employment and housing are examples of community-based services. Through the provision of such services the unnecessary institutionalization can be avoided.

Consumers
This term is sometimes used in relation to people with mental health problems who are receiving mental health services. (See also “service user” below.)

Consumer Involvement
This describes the practice of involving people with mental health problems in the planning and delivery of mental health services, as well as enabling people with mental health problems to make decisions about their treatment and their lives. Consumers and providers of mental health services are realizing that involvement in decisions relevant to the course of their lives is an integral component of effective and long-term recovery from mental health problems. Many service providers are moving towards a person-centered model that encourages partnership between consumer, service provider, and other relevant parties (family, careers).

D

Developmental disabilities
See “intellectual disabilities” below.

Deinstitutionalization
This term is used to describe the process to achieve the closure of institutions and the development of a range of community based services, as alternatives to institutional care, appropriate to the individual needs of people with disabilities. As former residents of institutions move to family-scale housing in the community, service providers must ensure that appropriate supports are in place so that people have meaningful opportunities to participate in society. Therefore, simultaneous with the closure of institutions, sustainable community support services that address the individual needs of people with mental disabilities must be developed.

Disability
The Disability Convention states “Persons with disabilities include those who have long-term physical, mental, intellectual or sensory impairments which in interaction with various barriers may hinder their full and effective participation in society on an equal basis with others” (Article 1)

E

Early Intervention
This describes a wide range of multi-disciplinary services offered to children with intellectual disabilities between birth and school age. Such services seek to prevent the development of disabilities, assist children with intellectual disabilities in areas such as physical, cognitive, linguistic, social, and emotional development, and support families in maximising their children’s development. These services also facilitate the inclusion of children with intellectual disabilities in mainstream education.

G

Guardian
A person appointed by a court to act on behalf of another person who is considered to lack the capacity to make decisions for him or herself. See “guardianship” below.

Guardianship
This term refers to the legal arrangements for decision-making on behalf of adults (usually 18 or over) who are deemed by a court to lack the capacity to make decisions themselves. There are two types of guardianship, “plenary” or “full” guardianship and “partial” guardianship. Under “plenary” guardianship the person loses his or her legal capacity to act and is no longer recognized before the law and the guardian is given extensive decision-making powers. Under “partial” guardianship the guardian is appointed to make decisions in connection with specific issues about which the individual is considered to lack decision-making capacity.

H

Health
A state of complete physical, mental, and social well-being and not merely the absence of disease or infirmity (WHO).

Health care or patient care (see also Patient care)

The prevention, treatment, and management of illness and the preservation of mental and physical well-being through the services offered by the medical, nursing, and allied health professions. This definition and similar ones sometimes are given for "patient care" as well. The World Health Organization states that this embraces all the goods and services designed to promote health, including preventive, curative, and palliative interventions, whether directed to individuals or populations.
"Any type of services provided by professionals or paraprofessionals with an impact on health status" (European Observatory on Health Systems and Policy online glossary).
"Medical, nursing or allied services dispensed by health care providers and health care establishments" (Declaration on Promotion of Rights of Patients in Europe, WHO, Amsterdam 1994).

Health care establishment
Any health care facility such as a hospital, nursing home, or establishment for disabled persons (Declaration on Promotion of Rights of Patients in Europe, WHO, Amsterdam, 1994).

Health care providers
Physicians, nurses, dentists, or other health professionals (Declaration on Promotion of Rights of Patients in Europe, WHO, Amsterdam 1994).

Health care system
The organized provision of health care services.

I

Independent Living
Living in the community, with appropriate supports, so that a person with a disability may live with dignity, make personal life decisions to the best of her/his ability, and participate in the everyday activities that people without disabilities take for granted. Support for the right of all people to live as independently as possible is integral to the process of deinstitutionalization of people with mental disabilities.

Informed consent
A legal condition in which a person can be said to agree to a course of action based upon an appreciation and understanding of the facts and implications. The individual needs to be in possession of relevant facts and the ability to reason.

Informed consent in the health care context
A process by which a patient participates in health care choices. A patient must be provided with adequate and understandable information on matters such as the treatment’s purpose, alternative treatments, risks, and side-effects.

In-patient
A patient whose care requires a stay in hospital or hospice facility for at least one night.

Institutionalization
The practice of placing people with disabilities in long-stay institutions, such as psychiatric hospitals, social care homes, and orphanages.

Intellectual disabilities
This term refers to a lifelong condition, usually present from birth or that develops before the age of 18. It is characterised by much lower than average intellectual ability and results in significant limitations in learning and understanding. (This condition is also described as “learning disabilities”, “developmental disabilities”, or “mental retardation”.)

L

Learning disabilities
See “intellectual disabilities” above

M

Medical intervention
Any examination, treatment, or other act having preventive, diagnostic therapeutic or rehabilitative aims and which is carried out by a physician or other health care provider (Declaration on the Promotion of Rights of Patients in Europe, WHO, Amsterdam 1994).

Mental disabilities
This is a generic term which covers both mental health problems (see below) and intellectual disabilities (see above).

Mental Health
“Mental health is defined as a state of well-being in which every individual realizes his or her own potential, can cope with the normal stresses of life, can work productively and fruitfully, and is able to make a contribution to her or his community.” (WHO)

Mental health problems
This term refers to a broad range of mental and emotional conditions and diagnoses, such as anxiety, depression, and schizophrenia, that affect the way a person feels or behaves. Individuals who experience severe and/or enduring mental health problems they may be described as suffering from a “mental illness” and may be referred to as being “mentally ill.” However, many people find these terms offensive and stigmatising.

Mental illness
See “mental health problems” above.

Mental retardation
See “intellectual disabilities” above.

O

Out-patient
Patient receiving treatment without spending any nights at a health care institution.

P

Patient
A user of health care services, whether healthy or sick (Declaration on the Promotion of Patients’ Rights in Europe, WHO, Amsterdam 1994).

Patient autonomy
The right of patients to make decisions about their medical care. Providers can educate and inform patients, but cannot make decisions for them.

Patient care (see also Health care)
The services rendered by members of the health professions or non-professionals under their supervision for the benefit of the patient. Similar definitions often are provided for the term "health care."

Patient-centered care
Doctrine recognizing the provision of health services as a partnership among health care providers and patients and their families. Decisions about medical treatments must respect patients’ wants, needs, preferences, and values.

Patient confidentiality
Doctrine that holds that the physician has the duty to maintain patient confidences. This is to allow patients to make full and frank disclosure to their physician, enabling appropriate treatment and diagnosis.

Person-centred planning
A model of community-based service that holds the client at the center of the life planning process. Person-centered planning is a broad model that offers multiple approaches to life planning so that the process can be tailored to the needs and wishes of the person with a disability. Rather than focusing solely on a mental disability label, person-centered planning recognizes the abilities, desires and humanity of each individual.

Primary health care
General health services available in the community near places where people live and work; the first level of contact individuals and families have with the health system.

R

Reasonable accommodation
This is defined in the Disability Convention as “necessary and appropriate modification and adjustments not imposing a disproportionate or undue burden where needed in a particular case, to ensure to persons with disabilities the enjoyment or exercise on an equal basis with others of all human rights and fundamental freedoms.” (Article 2 (definitions)).

Respite Care
Respite care, or ‘short breaks' as it is referred to in the UK, is short-term, temporary care provided for people with disabilities and their caregivers. Respite care may be planned or emergency short-term relief. It aims to provide caregivers with a break from their responsibilities, while providing a positive experience for the person with a disability. Respite care is an important part of the range of services supporting families that have a member with disabilities. Short breaks also help to combat the isolation, which children and adults with disabilities may feel, and enables them to meet new people, widen their social life and gain new experiences. Respite care is crucial in helping to reduce family stress, preserve the family unit, and provide stability. Respite care can also play a very important role in the prevention of institutionalization.

Right to health
Right to the enjoyment of a variety of facilities, goods, services, and conditions necessary for the realization of the highest attainable standard of health.

Q

Quality
One of four criteria set out by Committee on Economic, Social, and Cultural Rights by which to evaluate the right to the highest attainable standard of health. Quality: means that health facilities, goods, and services must be scientifically and medically appropriate and of good quality. This requires skilled medical personnel, scientifically approved and unexpired drugs, and hospital equipment (General Comment 14). See also “Acceptability,” Accessibility,” and “Availability.”

S

Secondary health care
General health services available in hospitals.

Self-advocacy
Self advocacy works at both the individual and group levels. At the individual level, self advocacy assumes that each person has the right to stand up for herself or himself and that people can be empowered to do so. At the group level, self advocacy is part of a larger civil rights movement that aims to represent people who, as a group, have historically and systematically been discriminated against and barred from full inclusion in society. While self advocacy is part of the larger disability rights movement in many parts of the world, it is primarily focused on issues of concern for people with intellectual disabilities.

Self-determination
Self-determination is founded on the principle that people with mental disabilities have the right to make informed decisions about their lives and the ability to live as responsible citizens in the community. Efforts for deinstitutionalization and the prevention of institutionalization must incorporate self determination in community-based services so that people with mental disabilities are enabled to live independent lives to the greatest degree possible. Services that utilize a self determination philosophy empower and support clients to make informed decisions about their lives. Self determination also recognizes that equality of opportunity and freedom of choice are balanced with the duty to live as a responsible citizen. Therefore, services oriented for self determination provide the information and support necessary for clients to realize their responsibilities as members of society.

Service provider
An organisation that provides services and support to people with disabilities.

Service user
A person receiving community based services or support.

Supported decision-making
In contrast to guardianship (see above), supported decision-making (SDM) is based on the principle that all individuals have a right to self-determination and respect for their autonomy, irrespective of disability. This means all individuals have a will which provides the basis for decision making. This also means that people with disabilities are entitled to necessary supports for exercising their decision-making capacity; for example, decisions made interdependently with family and trusted others should be legally recognized. In other words, SDM envisions that accommodations will be made in the legal system to enable people with intellectual disabilities and mental health problems to exercise their right to self-determination.

Supported employment
A service that facilitates employment on the open market for individuals with mental disabilities who have traditionally been denied employment and who need ongoing support to perform their work. The services include assistance in job seeking and individually tailored support and supervision for people with mental disabilities as well as ongoing support Oand consultation to employers and co-workers.

T

Tertiary health care
Specialized health services available in hospitals.

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