Tag: Mental Health Advocacy

Who is Virginia Gonzalez Torres?

Published on by Andrew MarshallLeave a comment

Introduction

Virginia Gonzalez Torres is a female human rights activist in Mexico who provides support and resources for the mentally ill. She is often referred to as the Dorothea Dix of Mexico.

Born into a wealthy family that owned a pharmacy chain, Virginia began a volunteer women’s programme at Sayago hospital in the 1980s. In her investigative role, she has sneaked into most of the public mental institutions in Mexico, sometimes posing as a patient, and she once smuggled the mayor of Mexico City into a men’s mental hospital to view the conditions there. More than once she has been beaten up at institutions when she was discovered inside hiding in the dark.

In 1992 Virginia helped make men’s mental hospital Ramirez Moreno infamous by filming conditions inside. In 1995, she helped draft a new mental health law.

A Look at the Soul

Virginia Gonzalez Torres was born in Mexico City, the daughter of Margarita Torres de la Parra and Roberto González Terán. He began his approach to the issue of human rights of the mentally ill when he faces 22 years to an episode that changed his life. Her older sister is hospitalised in a private psychiatric hospital in the United States, to be attended by depression. It was then that Virginia could see that, the psychiatric world, a world of confinement, punishment, neglect and suffering. When visiting her sister in the hospital daily, was awaken their interest in these places, then he realised that he had isolation rooms where patients could stay for days as part of treatment. Over the years Virginia was getting closer to the Psychiatric Hospital in Mexico now, his great ability to empathize with clients allowed them to look at the person behind the diagnosis and may feel their needs, was then given account that has found a cause to fight for the defence of human rights of people with mental illness.

Her Work in Civil Society

Virginia Gonzalez Torres prepares to visit psychiatric hospitals and is aware of the continuing human rights violations, lack of medical care, facilities deplorable lack of clothing and footwear, food in poor condition, in order that the deal was outrageous. Therefore decided to create the Mexican Foundation for Rehabilitation of Persons with mental illness, IAP, which started operations on 14 November 1980, being an institution of non-profit private assistance, is a pioneer in Mexico in the fight for respect for human rights of the mentally ill. In the same year, coordinating a community psychosocial rehabilitation program at the Hospital “José Sayago”, who then becomes a very significant place for Virginia, since the first public psychiatric hospital where he comes to begin what would later Psychiatric Reform in Mexico. Thus, by the Virginia Foundation continues to develop community programs aimed at the Psychosocial Rehabilitation in 1985 such as the “Centre Day” being the first programme of its kind in Mexico. Following this task in 1988, the Foundation is launching the program “Community Residence” thought in people with mental illness who have been discharged from public psychiatric hospitals and lack of family support and economic resources, this programme is free and supports users in their process of reintegration into society. Virginia González’s work was extended to other hospitals and in 1988 together with the Foundation organised a psychosocial rehabilitation program in the Psychiatric Hospital “Dr. Samuel Ramirez Moreno”. Virginia’s vision is to promote the participation of users of mental health services in the defence of their human rights, so the front of the Mexican Foundation for Psychosocial Rehabilitation, achieved during the keynote of the Congress of the World Mental Health, held in Mexico, involving users at the same time presented the “Charter of Human Rights of people suffering from mental illness and are hospitalised” as a cornerstone in the fight for the Defence of Human Rights. One of the legacies of Virginia Gonzalez Torres is the creation of citizen committees, who have the task of ensuring respect for human rights in their struggle for recognition has been achieved these committees to Secretary of Health and have access to all the administrative and budget of the institution. The first steering committee was established Psychiatric Hospital “Dr. Samuel Ramirez Moreno.”

Allegations of Human Rights Violations of the Mentally Ill

One of the tasks of the Foundation is publicly denounce human rights violations of people with mental illness in 1992, a complaint before the National Commission on Human Rights for violations at “Samuel Ramirez Moreno, this action is for a year after the Commission made a series of recommendations to address the abuse allegations.

Participation in the International Field

Virginia Gonzalez’s work has transcended the international field in 1994 during the session of the Human Rights Commission United Nations in Geneva, Switzerland, Virginia on behalf of the FMREM presented to the plenary of the Assembly a report on violations Human rights in Mexico’s public mental hospitals, thus manages to foreground the issue at international level that exists in Mexico.

Official Standard NOM-025-SSA2-1994

The tireless struggle of one of Virginia Gonzalez pays off when in 1995, holding with the foundation in the development of the NOM-025-SSA2-1994, which governs the provision of services in units of Hospital Care Medical-Psychiatric in Mexico. It gets its publication in July 1995 and will be included in the standard list of human rights of mentally ill in hospital, before the foundation promoted by addition of rules establishing the citizens’ committees in all Psychiatric Hospitals country.

Psychosocial Rehabilitation

Virginia Gonzalez believes that the asylum model Psychiatric Hospitals does not contribute to the rehabilitation of the mentally ill, advocates a new treatment, where users of such services have benefits to help them reintegrate into society, so in 1998, promotes actions that lead users to participate in the workshop receive financial support, promotes mental hospitals in the outputs of the user community, and organises workshops in four state psychiatric hospitals, which also manages the articles sold in stores within these mental hospitals are given at cost to users.

A Hope

Thanks to a public outcry by Virginia Gonzalez in 1999, closing the Ocaranza Psychiatric Hospital. At the same time there is a hope for the mentally ill who are admitted to this hospital, because in 2000, were inaugurated transitional villas hospital, whose goal is to leave the overcrowded and have a decent space in which to carry out activities that will lead to rehabilitation. They also open two halfway houses that support the reintegration of users who have been discharged from hospital.

Work from Government

The way Virginia has started from the Civil Society, perseverance and courage have enabled him to be recognised as the leading advocate of human rights of mental patients in Mexico. In 2000 assumed the post of Deputy Director of Psychosocial Rehabilitation in the Ministry of Health, from there its purpose is to generate large changes in psychiatric care for the benefit of the mentally ill. Virginia has not been a common public servant, but has shown its true commitment to defending human rights and is the first to withdraw if the government is not doing well, example is the mobilization that led in 2003 being a civil servant. A picket in front of the headquarters of the dependence of the Secretary of Health Julio Frenk require the Secretary to respond to patients ‘lifers’ with the system of psychiatric asylum. This mobilization makes the secretary agreed to install a desk, coordinated by Virginia Gonzalez Torres, to develop a plan to implement the so-called “Model Hidalgo” mental health care for the benefit of 2 000 400 patients who have been granted asylum different psychiatric hospitals in the country for 20 years, on average.

Miguel Hidalgo as a Role Model

This new model provides for the establishment of new structures of care and is based on respect for the rights of users to receive comprehensive medical care-psychiatric quality and warmth. The model provides a network of services with different alternatives for prevention, hospitalisation and social reintegration in the area of mental health.

National Council for Mental Health

In 2004, establishing the National Council of Mental Health and is named Virginia Technical Secretariat, recognising his work for over thirty years in the Defence of Human Rights of the Mentally Ill. During his tenure on the Council its main objective is to promote the Psychiatric Reform for the Restructuring of Psychiatric Services System and Mental Health in Mexico, which signed 27 states in 2006. This model is intended to implement the Miguel Hidalgo in the country. During his tenure on the Council, visit Virginia Psychiatric hospitals in the country, in 2005, visiting the Psychiatric Durango, realizes that this is the place where most frequently practice the use of electroshock, for what is against this practice, encouraged to seek other, less invasive to patients, makes a commitment to managing the inclusion of psychiatric medications in the catalogue of the Seguro Popular to the lack of medications is not an excuse to use the electric shocks. In January 2006, Virginia Gonzalez Torres, performing observations at Psychiatric Hospital “José Sayago”, found that he violated the human rights of detained 290 patients, with this panorama, the federal agency claims that the state government, “not unable or unwilling to intervene in the matter, “that allows the Health Department take responsibility for the Hospital to implement the model of psychiatric care Miguel Hidalgo.

Revolution in the Sayago Hospital

Virginia has been particularly attentive to the Hospital José Sayago, as it was in the place where he began his work with volunteer groups. On 19 October 2006 Villages were opened in the hospital transition Sayago Hospital, the latter being crucial action to continue implementing the Model Miguel Hidalgo on behalf of users. Later in the year 2009 takes action to continue the revolution within the hospital. A goal is to care for the users who are treated here is made from a humanistic approach, where doctors see the users as individuals and not as a diagnostic label, and they can receive quality medical care and warmth. With hospital nurses made a special approach recognises the importance of their work and urges them to comply with the highest quality standards but above all warmth. It serves the needs of nurses in training, human resources and materials. Propose an organisation of hospital units where work is organised with a multidisciplinary approach. Boost campaign is counting on me, count on you “for the purpose of bringing doctors and nurses to clients from a non-hierarchical position, but person to person.

Autism

A topic of interest to Virginia is the care of children with autism spectrum disorders, so that in 2009, opened the Autism Clinic, which provides specialized care during their first year of operation awarded 28, 800 and took care consultations more than 400 children. Another action in relation to Autism Walk was “Together for Autism” on 26 March to mark the World Day of Conscience on Autism, which is on 02 April, the walk had the participation of more than 3000 people.

Free Consultations for 2,009 Patients

A fight of Virginia Gonzalez Torres, has been to seek free of Mental Health Services, recognising that most people with these conditions can not afford medicines and consultations are required. Thus consultations given by the Centre City Comprehensive Mental Health does not charge any consultation. Following this, in 2009, following a dialogue work, the Chamber of Deputies proposing an agreement for exemption of payments to persons who are served annually in federal health facilities and lack of social insurance, or ISSSTE Seguro Popular Virginia Gonzalez Torres continues to lead the National Mental Health Council at the end of 2009 reported isolation rooms at the Psychiatric Hospital Adolfo. M. Nieto, a situation that eventually uncovered several irregularities that caused the dismissal of the authorities. He is currently working on amendments to the NOM-025-SSA, in order to continue promoting the reform of psychiatry in Mexico and thus make respect for human rights of the mentally ill is part of the daily life of all Mexicans.

This page is based on the copyrighted Wikipedia article < https://en.wikipedia.org/wiki/Virginia_Gonzalez_Torres >; it is used under the Creative Commons Attribution-ShareAlike 3.0 Unported License (CC-BY-SA). You may redistribute it, verbatim or modified, providing that you comply with the terms of the CC-BY-SA.

A Brief Overview of Advocacy in Fife (Scotland)?

Published on by Andrew Marshall1 Comment

Introduction

This short article aims to introduce key concepts about advocacy in Fife, Scotland, including:

  • The importance of advocacy;
  • The principles and standards;
  • Types of advocacy; and
  • The services available for children, younger people, adults and older people in Fife.

Read in conjunction with What is Advocacy?.

What is Advocacy?

Advocacy IS:

  • Supporting people to speak about issues important to them;
  • A safeguarding role;
  • Supporting people to make their own choices and decisions;
  • Supporting people to have their views heard and increase their self-confidence; and
  • Representing the views of people when they are unable to do so for themselves.

Advocacy IS NOT:

  • Counselling;
  • Mediation;
  • Care/support;
  • Telling somebody what to do; or
  • Befriending.

What are the Two Types of Advocate?

  • Citizen Advocates:
    • Are volunteers from all walks of life who want to help others in their community.
    • They are a friend, an ally and a spokesperson and they take time out of their busy lives to support people who may not otherwise be able to put their own interests forward.
    • Advocates may help their partner with practical support and advice, or just be someone to turn to for moral support.
  • Advocacy Partners:
    • Are vulnerable adults looking for support and someone to speak up for them.
    • Partners are generally people with learning disabilities or other issues that mean they may risk isolation, social exclusion or unfair treatment.
    • Partners may also have a mental health need, physical disability or long-term (chronic) health condition that means they are at risk of being unable to safeguard their rights.
    • Partners may be people living independently, in long-term care or in supported housing.

What is an Advocacy Relationship?

  • An advocacy relationship is a mutual partnership in which the advocate’s sole loyalty is to their partner.
  • It is not a service provided to the person with a disability but a relationship of friendship and support between two individuals.

What is the Importance of Advocacy?

Independent advocacy services are critical to safeguarding and empowering those people who are most vulnerable and at risk be enabling them to express their views and to have their voice heard.

Advocacy has to main themes:

  • Safeguarding people who are in situations where they are vulnerable; and
  • Speaking up for and with people who are not being heard, helping them to express their views and make their own decisions and contributions.

What are the Principles and Standards of Independent Advocacy?

Independent advocacy should be provided by an organisation whose sole role is independent advocacy, or whose other tasks either compliment or do not conflict with the provision of independent advocacy. If the service or advocate has a conflict of interest, they should withdraw from acting for the person.

  • Listening:
    • Ensures people are listened to and their views are taken into account.
    • Recognises and safeguards everyone’s right to be heard.
    • Reduces the barriers people face in having their voice head because of communication, capacity, the political, social, economic and personal interests.
  • Loyalty:
    • Is loyal to the people it supports, and stands by their views and wishes.
    • Provides no others services, has no other interests, ties or links other than delivery, promotion, support and defence of independent advocacy.
    • Must be able to evidence and demonstrate its structural, financial, and psychological independence from others.
    • Follows the agenda of the people supported, regardless of the views, interest and agendas of others.
  • Upholding Rights:
    • Stands up to injustice, discrimination and disempowerment.
    • Enables people to have greater control and influence.
    • Challenges discrimination and promotes equality and human rights.
    • Recognises power imbalances, or the barriers people face, and takes steps to address these.

What are the Types of Independent Advocacy?

Below are some of the most common types of independent advocacy services:

  • Individual Advocacy:
    • Professional, or issue-based advocacy, involves a professional advocate providing expert and specialist knowledge to help resolve a particular issue. The relationship is normally short-term.
    • Citizen advocacy is a person-based service that usually, but not always, takes place on a longer-term basis The advocate is usually an unpaid volunteer, who builds a trusting relationship with a person, and supports them to resolve any issues they have. This ensures that individuals have an active life within the community.
  • Non-Instructed Advocacy:
    • Can be provided by professional or citizen advocates. It happens when a person cannot tell an advocate what they want. This may be because the person has complex needs, and/or limited communication, which prevent them from clearly stating their wished and desires.
    • The advocate observes the person, tries different ways of communicating with them, and will speak to significant others in the person’s life.
  • Group Advocacy:
    • Group advocacy, or collective self-advocacy, is designed to allow people with the same concerns, issues or experiences to provide support to each other and highlight issues or campaign for improvement. The groups are run by members, for members, and are supported by a development worker.
  • Peer Advocacy:
    • This is provided by an individual who has gone through similar experiences. This arrangement can help to reassure the person, who is be advocated for, that the individual providing the advocacy understands them and their situation.
  • Children’s Rights Services:
    • The nature of Children’s Right Services is very similar to professional advocacy. It aims to ensure that a child’s rights are fully taken into account when decisions are made about them. Generally, this service is focussed on providing support for children and young people who have been in the care system, or who are subject to a child protection case conference.
    • The service supports the child or young person at reviews and other complex meetings, helping them to express their views and wishes in all decisions affecting them. This advocacy allows children and young people to contribute to statutory child’s plans.

What are the Adult Eligibility Criteria?

Within Fife, Scotland, the eligibility criteria for adults and older people includes:

  • People in Fife aged 16 or over;
  • People affected by disability;
  • People affected by chronic illness;
  • People with dementia or mental disorder (including mental illness, learning disability or personality disorder); and
  • Individuals who are unable to safeguard their own well-being, rights, care, or other interests.

What are the Professional Advocacy Services for Available for Adults and Older People in Fife?

  • Fife Women’s Aid (FWA):
  • Fife Forum:
    • A voluntary sector advice and information agency.
    • Established in 1990 as the Fife Elderly Forum Executive.
    • Provides advocacy for people over 65 who are in community hospitals, residential homes, or nursing care homes.
    • http://www.fifeforum.org.uk.
  • Fife Carers Centre:
  • Kindred:
  • Circles Network:
  • Fife Advocacy Forum (FVA):
    • Provides professional advocacy to children subject to compulsory measures under the Mental Health (Care and Treatment) (Scotland) Act 2003.
    • http://www.fifeadvocacyforum.org.uk.

What are the Citizen Advocacy Services for Adults and Older People in Fife?

  • Citizen advocates are unpaid and independent of service providers and families.
  • They are members of the local community.
  • Fife has three (3) citizen advocacy organisations who provide support on a longer term basis for people aged 16-65.
  • Shorter term advocacy is also available when someone would benefit from a citizen advocacy relationship to resolve a specific issue.

Organisations include:

What are the Group/Peer Advocacy Services for Adults and Older People in Fife?

  • People First (Scotland) work to support people with learning difficulties to have more choice and control over their lives.
  • Peer advocacy refers to one-to-one support provided by advocates with a similar disability or experience to a person using the service(s).
  • Trained and supported volunteers often provide peer advocacy as part of a coordinated project.
  • They facilitate seventeen (17) local advocacy groups in Fife, including two (2) women only groups and two (2) men only groups.
  • People First workers will support individuals to find a suitable local group for their needs.
  • http://peoplefirstscotland.org/.

What are the Advocacy Services for Children and Young People in Fife?

  • Who Cares? Scotland:
    • Provides professional advocacy for young people up to the age of 25.
    • These young people will either have been, or will be, resident in Fife’s residential homes.
    • http://www.whocaresscotland.org/.
  • Kindred:
  • Fife Young Carers:
  • Circles Network:
    • Provides professional advocacy to children subject to compulsory measures under the Mental Health (Care and Treatment) Act 2003.
    • http://circlesnetwork.org.uk/.
  • Believe in Children (Barnardo’s):
    • Provides a children’s rights and advocacy service to children and young people in secure or purchased residential placements.
    • Children looked after at home, in kinship care, foster care, or children and young people who are subject to multi-agency statutory child’s plans can also access advocacy through Barnardo’s.
    • http://www.barnardos.org.uk/fifeservices/.

Further Reading

  • Fife Advocacy Strategy 2018-2021.
  • Carers Strategy for Fife 2018-2021.
  • Advocacy in Fife (Information Leaflet).
  • Fife Adult Support and Protection (webpage).
  • Fife Health and Social Care Strategic Plan 2016-2019.

What is the Treatment Advocacy Centre?

Published on by Andrew Marshall1 Comment

Introduction

The Treatment Advocacy Center (TAC) is a US non-profit organisation based in Arlington, Virginia, US.

The organization, originally announced as the NAMI Treatment Action Centre in 1997, was subsequently directed by psychiatrist E. Fuller Torrey, and identifies its mission as “dedicated to eliminating barriers to the timely and effective treatment of severe mental illness”.

The organisation is most well-known for proposed laws, policies, and practices in the areas of legally compelled outpatient services or outpatient commitment for people diagnosed with mental illness (also known as assisted outpatient treatment, AOT). The organisation identifies its other key issues as “anosognosia, consequences of non-treatment, criminalization of mental illness, psychiatric bed shortages, public service costs, violence and mental illness”. TAC has been subject to criticism by mental health advocates to be promoting coercion and forced treatment.

Brief History

Although according to the TAC website, E. Fuller Torrey founded the Treatment Advocacy Centre in 1998 as an offshoot of the National Alliance on Mental Illness (NAMI), other sources indicate that the original name was the NAMI Treatment Action Centre. Laurie Flynn, the NAMI director at the time, stated in a press release, “It’s a national disgrace that, in this age of remarkable progress in brain research and treatment, so many individuals are left out in the cold”. TAC received initial financial support from Theodore and Vada Stanley, founders of the Stanley Medical Research Institute; TAC was founded as an affiliate organisation with a separate executive director and board. The organisation operates with funding from the affiliated Stanley Medical Research Institute, a non-profit organization which provides funding for research into bipolar disorder and schizophrenia in the United States. Torrey is currently a member of the Treatment Advocacy Centre’s board and is executive director of the Stanley Medical Research Institute. The relationship between Torrey and NAMI seemed to sour according to sources, with Torrey being disinvited from NAMI’s national convention in 2012 after advocates protested his TAC involvement and promotion of outpatient commitment.

Areas of Focus

The Treatment Advocacy Centre activities and projects include:

  • Developed a template law for legally mandated outpatient mental health treatment.
    • Released in 2000, the draft text is meant as a legal framework for authorising court-ordered treatment of individuals diagnosed with mental illness who are determined by the court to meet certain legal criteria around dangerousness to self or others or inability to care for oneself due to a mental illness.
  • Research and study into public policy and other issues related specific to serious mental illness.
  • Education of policymakers and judges regarding TAC’s viewpoint on serious mental illness; TAC’s opinion is that more legally mandated treatment and increases in hospital beds will improve care.

Controversy

TAC’s major focus on legally mandated treatment is opposed by other advocacy groups. The Bazelon Centre for Mental Health Law in a statement on forced treatment states “[n]ot only is forced treatment a serious rights violation, it is counterproductive. Fear of being deprived of autonomy discourages people from seeking care. Coercion undermines therapeutic relationships and long-term treatment.” Daniel Fischer, founder of National Coalition for Mental Health Recovery, described outpatient commitment as a “a slippery slope” back to the kind of mass institutionalization seen in the 1940s and ’50s”.

What is the Mental Disability Advocacy Centre?

Published on by Andrew MarshallLeave a comment

Introduction

The Mental Disability Advocacy Centre (MDAC) is an international human rights organisation founded in Hungary in 2002.

It is headquartered in Budapest.

Background

The MDAC is an international human rights organisation which advances the rights of children and adults with learning, intellectual and psycho-social (mental health) disabilities.

MDAC uses the law to promote equality and social inclusion through strategic litigation, advocacy, research and monitoring and capacity-building.

MDAC operates at the global level as well as regional and domestic levels in Europe and Africa.

Brief History

MDAC was founded by The Open Society Foundations (OSF) and was registered as a foundation by the Budapest Capital Court (registration number 8689) in November 2002. MDAC has participatory status with the Council of Europe, and was granted a special consultative status with the United Nations Economic and Social Council in 2011. MDAC is a member of the Fundamental Rights Platform of the European Union Agency for Fundamental Rights.

Beneficiaries

People with learning, intellectual and psycho-social (mental health) disabilities are excluded from economic, civil, social and political rights, including the right to education, health and to vote. They are also denied their personhood under the law, and can be placed in institutions against their will.

Objectives

MDAC’s objectives focus on the rights of people with intellectual, learning and psycho-social (mental health) disabilities to be free from abuse, be persons recognised by the law and have access to justice, to live in the community, be educated and to take part in society.

  • Freedom from ill-treatment: for people with disabilities to be not secluded from the rest of society nor be subjected to physical and chemical restraints, and to be treated only with their consent.
  • Legal capacity: for people with disabilities to have their right to make their own choices protected by law.
  • Community living: for people with disabilities to have a legal right to live in the community, and a legally enforceable choice as to where and with whom to live.
  • Inclusive education: for children, youth and adults with disabilities to have a legal right to be educated and learn alongside the rest of the community, and not be segregated.
  • Political participation: for people with disabilities to have the right to vote and stand for election, and be assisted in doing so.

Activities

These include creating progressive jurisprudence and law reform, empowering people with disabilities and promoting participatory politics, supported by research.

  • Defending disabled people’s rights in courts across Europe and Africa, setting precedent at European Court of Human Rights and other courts, training lawyers and providing legal advice and representation.
  • Advocacy by connecting with governments to reform and implement legal structures, undertaking a watchdog role, reviewing the actions of the UN and the EU as well as governments, and monitoring bodies, so that torture and ill-treatment is prevented.
  • Working at grassroots level to engage, empower and train people with disabilities to participate in acquiring their own rights.
  • Research of human rights abuses

Achievements

Since 2002, MDAC has achieved the following:

  • Ending the practice of caged beds: in 2003, MDAC carried out research in the Czech Republic, Hungary, Slovakia and Slovenia on those countries’ use of cage beds.
    • Cage beds are a means of confinement and restraint for adults and children used within many mental health and social institutions.
    • As a direct result of MDAC’s work, Hungary has banned their use in all institutions, the Czech Republic and Slovakia has banned their use in social care institutions.
    • Very few, if any, are still used in Slovenia.
  • Creating progressive human rights jurisprudence:
    • MDAC has won cases at the European Court of Human Rights which has opened the way to further challenges to political and social attitudes to the care of people with intellectual and psycho-social disabilities.
    • As a result, it has lobbied for reform of laws on guardianship and the right to be legally recognised as a person in Central and Eastern Europe and Russia. Stanev v Bulgaria (2012), concerned the long-term placement, torture and ill-treatment of a man diagnosed with a mental illness in a remote care institution by his guardian.
    • He had no recourse to legally challenge the decision in Bulgarian courts.
    • This was the first time the Court found a violation of Article 3 of the European Convention on Human Rights (prohibition of torture) in a disability case.
    • It was also the first time the court found that a person in a social care institution was unlawfully detained. Shtukaturov v Russia (2008), concerned the detention of a man diagnosed with schizophrenia.
    • He was placed under guardianship without being informed of the decision.
    • His guardian unlawfully allowed for his detention in a psychiatric hospital for seven months without a court review, and he was forcibly injected with psychiatric medication against his will.
    • MDAC took his case to the European Court of Human Rights and he won.
  • The right to education:
    • In 2008, MDAC won an international case under the European Social Charter (MDAC v. Bulgaria) on behalf of up to 3,000 Bulgarian children with intellectual disabilities – the first case on a child’s right to education in Eastern Europe.
  • The right to vote:
    • MDAC’s ‘Save the Vote’ campaign resulted in the Venice Commission, a constitutional law expert group, supporting universal suffrage for people with disabilities.
  • In 2013, MDAC was long-listed for the Václav Havel Human Rights Prize.
  • In 2014, MDAC released a report on cage beds in the Czech Republic, after its ground-breaking first report published in 2003.
    • This was covered by Lancet Psychiatry.

What is a Support Group?

Published on by Andrew Marshall5 Comments

Introduction

In a support group, members provide each other with various types of help, usually nonprofessional and nonmaterial, for a particular shared, usually burdensome, characteristic. Members with the same issues can come together for sharing coping strategies, to feel more empowered and for a sense of community.

Help may take the form of providing and evaluating relevant information, relating personal experiences, listening to and accepting others’ experiences, providing sympathetic understanding and establishing social networks.

A support group may also work to inform the public or engage in advocacy.

Refer to Peer Support and Peer Support Specialist.

Background

Formal support groups may appear to be a modern phenomenon, but they supplement traditional fraternal organisations such as Freemasonry in some respects, and may build on certain supportive functions (formerly) carried out in (extended) families.

Other types of groups formed to support causes, including causes outside of themselves, are more often called advocacy groups, interest groups, lobby groups, pressure groups or promotional groups. Trade unions and many environmental groups, for example, are interest groups.

The term support group in this article refers to peer-to-peer support.

Maintaining Contact

Support groups maintain interpersonal contact among their members in a variety of ways. Traditionally, groups meet in person in sizes that allow conversational interaction. Support groups also maintain contact through printed newsletters, telephone chains, internet forums, and mailing lists. Some support groups are exclusively online (see below).

Membership in some support groups is formally controlled, with admission requirements and membership fees. Other groups are “open” and allow anyone to attend an advertised meeting, for example, or to participate in an online forum.

Management by Peers or Professionals

A self-help support group is fully organised and managed by its members, who are commonly volunteers and have personal experience in the subject of the group’s focus. These groups may also be referred to as fellowships, peer support groups, lay organisations, mutual help groups, or mutual aid self-help groups. Most common are 12-step groups such as Alcoholics Anonymous and self-help groups for mental health.

Professionally operated support groups are facilitated by professionals who most often do not share the problem of the members, such as social workers, psychologists, or members of the clergy. The facilitator controls discussions and provides other managerial service. Such professionally operated groups are often found in institutional settings, including hospitals, drug-treatment centres and correctional facilities. These types of support group may run for a specified period of time, and an attendance fee is sometimes charged.

Types of Support Group

In the case of a disease, an identity or a pre-disposition, for example, a support group will provide information, act as a clearing-house for experiences, and may serve as a public relations voice for sufferers, other members, and their families. Groups for high IQ or LGBTQIA+ individuals, for example, differ in their inclusivity, but both connect people on the basis of identity or pre-disposition.

For more temporary concerns, such as bereavement or episodic medical conditions, a support group may veer more towards helping those involved to overcome or push through their condition/experience.

Some support groups and conditions for which such groups may be formed are:

  • Addiction.
  • Alcoholics Anonymous.
  • Anxiety disorders.
  • Bereavement.
  • Cancer.
  • Diabetes.
  • Debtors Anonymous.
  • Domestic violence.
  • Eating disorders.
  • Gamblers Anonymous.
  • Grief.
  • Infertility.
  • Mental Health.
  • Sexual abuse survivors.
  • Stuttering.
  • Suicide prevention.

Online Support Groups

Since at least 1982, the Internet has provided a venue for support groups. Discussing online self-help support groups as the precursor to e-therapy, Martha Ainsworth notes that “the enduring success of these groups has firmly established the potential of computer-mediated communication to enable discussion of sensitive personal issues.”

In one study of the effectiveness of online support groups among patients with head and neck cancer, longer participation in online support groups were found to result in a better health-related quality of life.

Appropriate Groups Still Difficult to Find

A researcher from University College London says the lack of qualitative directories, and the fact that many support groups are not listed by search engines can make finding an appropriate group difficult. Even so, he does say that the medical community needs “to understand the use of personal experiences rather than an evidence-based approach… these groups also impact on how individuals use information. They can help people learn how to find and use information: for example, users swap Web sites and discuss Web sites.”

It is not difficult to find an online support group, but it is hard to find a good one. In the article What to Look for in Quality Online Support Groups, John M. Grohol gives tips for evaluating online groups and states: “In good online support groups, members stick around long after they’ve received the support they were seeking. They stay because they want to give others what they themselves found in the group. Psychologists call this high group cohesion, and it is the pinnacle of group achievement.”

Benefits and Pitfalls

Several studies have shown the importance of the Internet in providing social support, particularly to groups with chronic health problems. Especially in cases of uncommon ailments, a sense of community and understanding in spite of great geographical distances can be important, in addition to sharing of knowledge.

Online support groups, online communities for those affected by a common problem, give mutual support and provide information, two often inseparable features. They are, according to Henry Potts of University College London, “an overlooked resource for patients.” Many studies have looked at the content of messages, while what matters is the effect that participation in the group has on the individual. Potts complains that research on these groups has lagged behind, particularly on the groups which are set up by the people with the problems, rather than by researchers and healthcare professionals. User-defined groups can share the sort of practical knowledge that healthcare professionals can overlook, and they also impact on how individuals find, interpret and use information.

There are many benefits to online support groups that have been found through research studies. Although online support group users are not required to be anonymous, a study conducted by Baym (2010) finds that anonymity is beneficial to those who are lonely or anxious. This does not pertain to some people seeking support groups, because not all are lonely and/or anxious, but for those who are, online support groups are a great outlet where one can feel comfortable honestly expressing themselves because the other users do not know who they are.

A study was conducted by Walther and Boyd (2000) and they found a common trend to why people find online support groups appealing. First, the social distance between members online reduced embarrassment and they appreciated the greater range of expertise offered in the larger online social network. Next, they found that anonymity increased one’s confidence in providing support to others and decreased embarrassment. The users of the social support websites were more comfortable being able to reread and edit their comments and discussion forum entries before sending them, and they have access to the website any time during the day. Each of these characteristics of online support groups are not offered when going to an in-person support group.

In a study conducted by Gunther Eysenbach, John Powell, Marina Englesakis, Carlos Rizo, and Anita Stern (2004), the researchers found it difficult to draw conclusions on the effectiveness of online peer-to-peer support groups. In online support groups, people must have the desire to support and help each other, and many times participants go on the sites in order to get help themselves or are limited to a certain subgroup.

An additional benefit to online support groups is that participation is asynchronous. This means that it is not necessary for all participants to be logged into the forum simultaneously in order to communicate. An experience or question can be posted and others can answer questions or comment on posts whenever they are logged in and have an appropriate response. This characteristic allows for participation and mass communication without having to worry about time constraints. Additionally, there are 24-hour chat rooms and spaces for focused conversation at all times of the day or night. This allows users to get the support they need whenever they need it, while remaining comfortable and, if they so wish, anonymous.

Mental Health

Although there has been relatively little research on the effectiveness of online support groups in mental health, there is some evidence that online support groups can be beneficial. Large randomised controlled trials have both found positive effects and failed to find positive effects.

What is Advocacy?

Published on by Andrew Marshall2 Comments

Introduction

Advocacy is an activity by an individual or group that aims to influence decisions within political, economic, and social institutions. Advocacy includes activities and publications to influence public policy, laws and budgets by using facts, their relationships, the media, and messaging to educate government officials and the public.

Advocacy can include many activities that a person or organisation undertakes including media campaigns, public speaking, commissioning and publishing research. Lobbying (often by lobby groups) is a form of advocacy where a direct approach is made to legislators on a specific issue or specific piece of legislation.

Research has started to address how advocacy groups in the United States and Canada are using social media to facilitate civic engagement and collective action.

An advocate is someone who provides advocacy support to people who need it.

Read in conjunction with A Brief Overview of Advocacy in Fife (Scotland).

Forms of Advocacy

There are several forms of advocacy, each representing a different approach in a way to initiate changes in the society. One of the most popular forms is social justice advocacy.

The initial definition does not encompass the notions of power relations, people’s participation and a vision of a just society as promoted by social justice advocates. For them, advocacy represents the series of actions taken and issues highlighted to change the “what is” into a “what should be”, considering that this “what should be” is a more decent and a more just society. Those actions, which vary with the political, economic and social environment in which they are conducted, have several points in common. They:

  • Question the way policy is administered.
  • Participate in the agenda-setting as they raise significant issues.
  • Target political systems “because those systems are not responding to people’s needs”.
  • Are inclusive and engaging.
  • Propose policy solutions.
  • Open up space for public argumentation.

Other forms of advocacy include:

  • Budget advocacy:
    • Another aspect of advocacy that ensures proactive engagement of Civil Society Organisations with the government budget to make the government more accountable to the people and promote transparency.
    • Budget advocacy also enables citizens and social action groups to compel the government to be more alert to the needs and aspirations of people in general and the deprived sections of the community.
  • Bureaucratic advocacy:
    • People considered “experts” have more chance to succeed at presenting their issues to decision-makers.
    • They use bureaucratic advocacy to influence the agenda, although at a slower pace.
  • Express versus issue advocacy:
    • These two types of advocacy when grouped together usually refers to a debate in the United States whether a group is expressly making their desire known that voters should cast ballots in a particular way, or whether a group has a long-term issue that isn’t campaign and election season specific.
  • Health advocacy:
    • Supports and promotes patients’ health care rights as well as enhance community health and policy initiatives that focus on the availability, safety and quality of care.
  • Ideological advocacy:
    • In this approach, groups fight, sometimes during protests, to advance their ideas in the decision-making circles.
  • Interest-group advocacy:
    • Lobbying is the main tool used by interest groups doing mass advocacy.
    • It is a form of action that does not always succeed at influencing political decision-makers as it requires resources and organisation to be effective.
  • Legislative advocacy:
    • The “reliance on the state or federal legislative process” as part of a strategy to create change.
  • Mass advocacy:
    • Any type of action taken by large groups (petitions, demonstrations, etc.).
  • Media advocacy:
    • The strategic use of the mass media as a resource to advance a social or public policy initiative.
    • In Canada, for example, the Manitoba Public Insurance campaigns illustrate how media advocacy was used to fight alcohol and tobacco-related health issues.
    • One can also consider the role of health advocacy and the media in the enactment of municipal smoking bylaws in Canada between 1970 and 1995.
  • Special education advocacy:
    • Advocacy with a specific focus on the educational rights of students with disabilities.

Different contexts in which advocacy is used:

  • In a legal/law context:
    • An advocate is the title of a specific person who is authorised/appointed in some way to speak on behalf of a person in a legal process.
  • In a political context:
    • An advocacy group is an organised collection of people who seek to influence political decisions and policy, without seeking election to public office.
  • In a social care context:
    • Both terms (and more specific ones such as “independent advocacy”) are used in the UK in the context of a network of interconnected organisations and projects which seek to benefit people who are in difficulty (primarily in the context of disability and mental health).
  • In the context of inclusion:
    • Citizen Advocacy organisations (or programmes) seek to cause benefit by reconnecting people who have become isolated.
    • Their practice was defined in two key documents: CAPE, and Learning from Citizen Advocacy Programmes.

Advocacy Tactics

Margaret E. Keck and Kathryn Sikkink have observed four types of advocacy tactics:

  • Information politics: quickly and credibly generating politically usable information and moving it to where it will have the most impact.
  • Symbolic politics: calling upon symbols, actions, or stories that make sense of a situation for an audience that is frequently far away.
  • Leverage politics: calling upon powerful actors to affect a situation where weaker members of a network are unlikely to have influence.
  • Accountability politics: efforts to hold powerful actors to their previously stated policies or principles.

These tactics have been also observed within advocacy organisations outside the USA.

Aims of Advocacy

Advocacy in all its forms seeks to ensure that people, particularly those who are most vulnerable in society, are able to:

  • Have their voice heard on issues that are important to them.
  • Defend and safeguard their rights.
  • Have their views and wishes genuinely considered when decisions are being made about their lives.
  • Leading a change towards a greater social justice and equality.

Advocacy is a process of supporting and enabling people to:

  • Express their views and concerns.
  • Access information and services.
  • Defend and promote their rights and responsibilities.
  • Explore choices and options.

Use of the Internet

Groups involved in advocacy work have been using the Internet to accomplish organisational goals. It has been argued that the Internet helps to increase the speed, reach and effectiveness of advocacy-related communication as well as mobilisation efforts, suggesting that social media are beneficial to the advocacy community.

Other Examples

Advocacy activities may include conducting an exit poll or the filing of an amicus brief.

Topics

People advocate for a large number and variety of topics. Some of these are clear-cut social issues that are universally agreed to be problematic and worth solving, such as human trafficking. Others – such as abortion – are much more divisive and inspire strongly-held opinions on both sides. There may never be a consensus on this latter type of issues, but intense advocacy is likely to remain. In the United States, any issue of widespread debate and deeply-divided opinion can be referred to as a social issue. The Library of Congress has assembled an extensive list of social issues in the United States, ranging from vast ones like abortion to same-sex marriage to smaller ones like hacking and academic cheating.

Topics that appear to involve advancing a certain positive ideal are often known as causes. A particular cause may be very expansive in nature – for instance, increasing liberty or fixing a broken political system. For instance in 2008, US presidential candidate Barack Obama utilised such a meaning when he said, “this was the moment when we tore down barriers that have divided us for too long; when we rallied people of all parties and ages to a common cause.” Change.org and Causes are two popular websites that allow people to organise around a common cause.

Topics upon which there is universal agreement that they need to be solved include, for example, human trafficking, poverty, water and sanitation as a human right.

“Social issues” as referred to in the United States also include topics (also known as “causes”) intended by their advocates to advance certain ideals (such as equality) include: civil rights, LGBT rights, women’s rights, environmentalism, and veganism.

Transnational Advocacy

Advocates and advocacy groups represent a wide range of categories and support several issues as listed on worldadvocacy.com. The Advocacy Institute, a US-based global organisation, is dedicated to strengthening the capacity of political, social, and economic justice advocates to influence and change public policy.

The phenomenon of globalisation draws a special attention to advocacy beyond countries’ borders. The core existence of networks such as World Advocacy or the Advocacy Institute demonstrates the increasing importance of transnational advocacy and international advocacy. Transnational advocacy networks are more likely to emerge around issues where external influence is necessary to ease the communication between internal groups and their own government. Groups of advocates willing to further their mission also tend to promote networks and to meet with their internal counterparts to exchange ideas.

Transnational advocacy is increasingly playing a role in advocacy for migrants rights, and migrant advocacy organisations have strategically called upon governments and international organisations for leverage.

Transnational advocates spend time with local interest groups in order to better understand their views and wishes.