back to Chapter Seven Contents
What are some examples of effective human rights programming in the area of mental disability?
Introduction
In this section, you are presented with four examples of effective advocacy strategies in mental disability and human rights. These are:
- Litigation protecting the right of people who lack capacity to agree to hospital admission
- Advocating for the Implementation of the UN Convention on the Rights of Persons with Disabilities in Croatia
- Advocating across Europe for Independent Living for People with Disabilities
- Establishing Community-Based Supported Housing in Serbia.
Rights-based programming
As you review each activity, ask yourself whether it incorporates the five elements of “rights-based” programming:
- Participation
Does the activity include the active and meaningful participation by the affected people and communities, civil society, and other relevant stakeholders?
- Accountability
Does the activity identify both the entitlements of claim-holders and the obligations of duty-holders? Does it create mechanisms of accountability for violations of rights?
- Non-discrimination
Does the activity identify who is most vulnerable, and how? Does it pay particular attention to the specific needs of people with mental disabilities?
- Empowerment
Does the activity give its beneficiaries the power, capability, capacity, and access to bring about change in their own lives? Does it place them at the center of the process rather than treating them as objects of charity?
- Linkage to rights
Does the activity define its objectives in terms of legally enforceable rights (civil, political, economic, social, and cultural rights), with clear links to international, regional, and national laws?
Finally, ask yourself whether and how the activity might be created or replicated in your country:
- Does such a project already exist in your country? If so, does it need to be expanded or adapted?
- If not, should it be created? What steps need to be taken to replicate it? What barriers need to be overcome to ensure successful replication?
- What steps need to be taken to replicate this activity?
- What barriers need to be overcome to ensure its successful replication?
back to top
Example 1: Litigating to protect the rights of people who lack legal capacity and are at risk of being placed in an institution
Litigation against the United Kingdom in the European Court of Human Rights led to additional safeguards against involuntary hospital admission for people lacking legal capacity.
Project type
Strategic litigation
Health and human rights issue
Under the Mental Health Act of 1983 (England and Wales), patients who are detained in psychiatric hospitals have the right to independent review of their detention. However, patients who are hospitalized “informally” or fall outside the jurisdiction of the Act are denied these protections. A 48-year-old man with autism, Mr. L., was admitted to a psychiatric hospital after becoming agitated at the day-care center he attended regularly. Because he was “quite compliant” and had “not attempted to run away”, his psychiatrist did not formally detain him under the Act, thus denying him the right to independent review.
Actions taken
Mr. L.’s carers took legal action against the National Health Service Trust which managed the hospital, claiming he had been unlawfully detained. The UK House of Lords held that patients such as Mr. L. who lack capacity but do not object to their admission can be admitted to hospital informally. Mr. L.’s carers appealed to the European Court of Human Rights.
Results
- The European Court held that Mr. L.’s right to liberty under Article 5 of the European Convention on the Protection of Human Rights and Fundamental Freedoms had been violated. Mr. L. had been “deprived of his liberty” within the meaning of Article 5(1) and his detention had been unlawful, the Court ruled, because his admission was not “in accordance with a procedure prescribed by law”. The Court also found that the legal proceedings available to Mr. L. had not met the standards required by Article 5(4) for “the lawfulness of his detention” to be “decided speedily by a court."
- The UK government took action to address the violations identified by the Court by providing additional safeguards for people who lack capacity and are deprived of their liberty. The safeguards were inserted into the Mental Capacity Act 2005, which provides a framework for decision making on behalf of those who lack capacity to make decisions for themselves. They are likely to come into force in October 2009.
Lessons learned
The case highlights the use of legal mechanisms to protect and promote the rights of people who lack capacity to make decisions for themselves. While there remains concern that the procedures proposed by the government are complex and bureaucratic, the procedures nevertheless provide an important means of preventing abuse against people who are unable to make decisions about their care and treatment because they lack legal capacity.
back to top
Example 2: Advocating for the Implementation of the UN Convention on the Rights of Persons with Disabilities in Croatia
The new UN Convention on the Rights of Persons with Disabilities has the potential to introduce significant improvements in the lives of people with intellectual disabilities. The Association for Self-Advocacy (ASA) in Croatia has undertaken a number of activities to ensure its government’s compliance with the Convention.
Project type
Human rights training and capacity-building; integrating human rights approaches in health services delivery
Health and human rights issue
Croatia was one of the first countries to ratify the UN Convention on the Rights of Persons with Disabilities (the Convention), yet people with intellectual disabilities remain among the most marginalized in society. Many people with intellectual disabilities in Croatia are deprived of their legal capacity and thus denied the right to make any decisions regarding their lives. Many cannot realize their right to education, employment, marriage, ownership of property, voting, and other basic rights. With a lack of community based services, one in three children and adults with severe intellectual disabilities remains institutionalized.
Actions taken
The Association for Self Advocacy (ASA), established in 2003 is the first and only NGO in Croatia run by and for people with intellectual disabilities. ASA undertakes a variety of activities aimed at promoting the implementation of various provisions of the Convention:
- Consistent with the Convention’s guarantee of full and effective participation and inclusion in society, ASA advocates for the development of community-based services as alternatives to institutionalization.
- Consistent with the Convention’s provisions on raising public awareness, ASA trains people with intellectual disabilities about human rights and self-advocacy, and organizes public awareness campaigns about the human rights of people with intellectual disabilities.
- Consistent with the Convention’s guarantee of accessibility, ASA prepares and distributes easy-to-read materials on the rights of people with intellectual disabilities..
Results and lessons learned
- ASA has become an established NGO, led by people with intellectual disabilities and recognized for its expertise in human rights and advocacy.
- People with intellectual disabilities in Croatia, Slovenia and Bosnia and Herzegovina who have participated in ASA's self-determination and self-advocacy training are able to advocate for their human and civil rights in their own countries.
- ASA works with other self advocacy groups, human rights organizations and NGOs providing community based services for people with intellectual disabilities to promote implementation of the Convention.
back to top
Example 3: Advocating across Europe for Independent Living for People with Disabilities
To advocate for community-based living for people with disabilities, a group of advocacy organizations formed a coalition, the European Network for Community Living, that advocates at the European level and supports member organizations in their national level advocacy.
Project type
Strategic networking
Health and human rights issue
Over a million people with disabilities are confined to long-stay institutions across Europe, often for life. Despite recognition that people with disabilities have the right to live in the community as equal citizens, the legal, financial and other reforms necessary for community living have not been made. The development of a wide range of quality community-based alternatives to institutionalization is crucial to this reform.
Actions taken
In 2005, a group of advocacy organisations established the European Coalition for Community Living (ECCL) to advocate for the development of comprehensive, quality community-based services as an alternative to institutionalization. A Europe wide cross-disability initiative, ECCL is led by the European Network on Independent Living, the European umbrella organisation run by people with disabilities. ECCL’s activities include:
- Publishing position papers and briefings and making recommendations on the right of people with disabilities to live in the community.
- Advocating before European institutions for polices that support community-based services, and highlighting the crucial importance of involving people with disabilities as equal partners in this work.
- Supporting ECCL members in their national advocacy activities.
- Facilitating exchange of information and the promotion of best practice in the development of community based services, through seminars and newsletters for ECCL members and other interested organizations.
- Launching a campaign calling for recognition of the right of all people with disabilities to live in the community and for a shift in government funding from long stay institutions to community-based services. A commitment to the campaign can be signed at www.community-living.info.
Results and lessons learned
- ECCL has provided organizations with information and contacts in planning, providing or advocating for community-based services.
- ECCL has established cooperation with policy and decision makers at the European level and is considered to be an expert on community living and deinstitutionalization by various European disability organizations.
- By insisting on the central role of people with disabilities in the planning and delivery of services, ECCL has gained the trust of user-led organizations and is considered a legitimate representative of their interests.
back to top
Example 4: Establishing Community-Based Supported Housing in Serbia
Through a combination of pilot programs, research, and development of minimum standards, a non-governmental organization had a major influence on the establishment of community-based supported housing for people with intellectual disabilities in Serbia.
Project type
Law reform; Integrating human rights approaches in health services delivery
Health and human rights issue
In Serbia, as in many Central and Eastern European countries, most people with intellectual disabilities are placed in long-stay institutions with little or no contact with their families and communities. A major reason for this is the lack of alternative services and support at the community level.
Actions taken
The Serbian Association for Promotion of Inclusion (SAPI), a non-governmental organization that promotes the human rights and social inclusion of people with intellectual disabilities, has worked effectively with the Ministry of Labor and Social Policy to establish community-based supported housing as an alternative to institutionalization. SAPI's work includes:
- Developing pilot community-based alternatives to institutions, focusing on supported housing.
- From 2003 to 2007, in partnership with MHI and the Ministry for Labor and Social Policy, developing a project study entitled the Community for All Initiative Serbia that detailed how to implement national level reform.
- Participating in developing "Minimum standards and specifications of supported housing services" as a member of the Ministry's Working Group for developing standards for social welfare services.
Results and lessons learned
- SAPI’s work has shown that it is possible for non-governmental organizations to develop quality community based services and to have a significant influence on policy and service development.
- SAPI’s pilot community-based alternatives have been recognized by the Ministry for their quality, and have helped to make community-based supported housing a Ministry priority, with SAPI a key Ministry partner.
- The legislative proposals in the Community for All study were included in a draft law expected to be adopted by Parliament and implemented by the end of 2008. The key component of the proposed amendments is that community-based supported housing will be legally recognized as a viable alternative to institutional placement.
- For the evaluation of the minimum standards for community-based services, SAPI was selected by the Ministry as a Model Service Provider. At the Ministry’s request, SAPI developed financial regulations for supported housing
