a. Work collaboratively in developing an inter-sectoral plan to establish community-based services that can provide services for those currently residing in institutions, that build on the support provided by NGOs and families, and that create community support for individuals without families or in abusive family situations. Given the inter-sectoral nature of mental health reform and service provision, there is a danger that no entity will definitively take the decision-making initiative, ensure that adequate funds are dedicated to various programs, and ensure that all populations requiring community-based services are addressed. Pertinent ministries should cooperate to develop a comprehensive plan that clearly delineates responsibility for various elements of community-based service development.
b. Support existing networks of informal care givers.
These activities should decrease the time and financial burden of care-giving and support caregivers to develop their skills. In-home care, such as meals, visiting mental health or nurse support, and vocational or educational enrichment should be provided regardless of whether or not a person with mental disabilities has a family member assuming primary caretaking responsibilities.
Respite services should be made available through home stays or short-term institutionalization, in order to give care providers short breaks. The State should also formally recognize the economic value of care-giving.
This could include ‘soft support,’ such as information, advice and membership in support groups; or ‘hard support,’ such as social security benefits to replace lost income, quasi-employment as a paid care-giver, and protection of one‘s loss of employment-related social rights.
3. Establish independent human rights monitoring mechanisms. Monitoring of mental health care institutions by independent organizations should occur regularly. Governments should fund independent
entities comprised of relevant ministry staff and representatives of human rights NGOs and users’/
disabled people organizations. These entities should regularly monitor all hospitals, social care homes, and community-based programming and should have uninhibited access to institutional staff as well as to clients. They should use monitoring tools that are based on international standards elaborated by WHO and others. Monitoring should seek to identify human rights violations, as well as areas for improvement in rehabilitation and community integration.
4. Establish legal protections for commitment and treatment consistent with European standards. Ensure the right to review by an independent judicial authority and access to a lawyer before a trial or hearing begins.
Train judges, hospital administration, and psychiatrists in these protections.
5. Support the development of users’ organizations.
Government ministries should make the consultation with users a regular aspect of policy development, implementation, and evaluation. In cases where no users’ groups exist or where policy capacity is inadequate, governments should support the creation and training of such groups. Attention must be paid to ensure that any existing disability organizations include persons with intellectual disability and mental health problems (as opposed to organizations that address only physical disabilities). Formal mechanisms of participation should be created and should facilitate broad participation. Rather than just consulting with a few individuals who are regularly contacted to represent people with mental disabilities, planners should use participatory tools to ensure that a large number of residents of institutions and community-based service users are able to voice their needs and desires.
6. Implement national campaigns to end stigma.
Ministries of health and other pertinent ministries should spearhead media and other awareness campaigns that undermine stigma among the medical and social work professions, as well as among the public at large.
7. Create inter-ministerial teams to support the development of a workforce that is knowledgeable about and committed to rights-based approaches to persons with mental disability. University curricula for psychiatrists as well as for social workers should be updated to reflect WHO policy and international human rights standards pertinent to people with mental disabilities. Continuing education should be provided to new and existing professionals in these fields. Lay staff of hospitals, social care homes, and community-based services should be trained in the rights-community-based approach to disability. These teams should also address the training and work of those who often ‘diagnose’
mental health problems or intellectual disabilities – primary care physicians. Primary care physicians should be appropriately trained, and should have effective mechanisms of referral to specialized medical and non-medical care.
8. Allocate funding to replicate successful pilot programs on the national level. Several examples of pilot projects or institution level efforts to support true participation or community integration were cited in country sections. Governments should make these efforts the rule, rather than the exception. Human and financial resources should be dedicated to documenting and replicating successful pilot projects in institutions and communities throughout the country.
9. Improve access to justice for people with mental disabilities. Access to justice would improve individuals’
capacity to ensure their own rights protection.
Establishing a system of legal aid whereby individuals labelled with mental disabilities can receive pro bono legal assistance would ensure that those residing in institutions with few financial resources can benefit from protections. Moreover, the government should create guidelines regulating hospital and social care home responsibilities to inform residents about their rights to access justice.
10. Support with human and financial resources relevant analytical and scientific research. Such research should include independent analysis of existing attitudinal, managerial, and financial obstacles to de-institutionalization and community-based care development. This will ensure that the development of mental health policy is based on a realistic assessment of knowledge and service provision, as opposed to recommendations made by lobbying entities favouring institutionalization or to the biases and stigma held by some policy planners. Scientific analysis of current gaps will also facilitate the development of clear evaluation criteria that can be applied to new community-based programming. Evaluative indicators can look at the quality and effectiveness of services provided, quality of life, human rights protection, and decreased social exclusion and stigma.
11. Strengthen protections in guardianship legislation.
Under international and national law, people with mental disabilities have the same rights as other citizens. Thus, guardianship should be limited to those activities for which an individual is found by a court to be incapacitated, government should create a system whereby partial guardianship can be designated by the courts, on an individually-tailored basis. Persons could then exercise their rights according to the extent of their ability. These changes would entail:
a. Avoiding plenary guardianship as much as possible
b. Designating guardianship in an individually-tailored and flexible fashion
c. Recognising guardianship as a last resort that inherently infringes on the rights and status of the disabled
d. Developing alternatives to guardianship such as those developed in Sweden, Canada, and the United States.
In Sweden, a special representative or trustee may be designated, who has fewer rights than a guardian. In Canada, there is an umbrella tool that includes various ways of planning ahead and anticipating needs without resorting to guardianship (supported decision-making);
while in the United States, the court has the possibility to grant the guardian only the powers necessary to provide for demonstrated needs.
12. All countries should ratify the Council of Europe Convention on Human Rights and Biomedicine. The purpose of this Convention is to: “Protect the dignity and identity of all human beings and guarantee everyone, without discrimination, respect for their integrity and other rights and fundamental freedoms with regard to the application of biology and medicine.”212 Latvia has not yet ratified the Convention, and Russia has neither signed nor ratified it. Doing so would require that Member State governments ensure that domestic legislation is in keeping with Convention laws relating to access to medical care, informed consent, involuntary treatment of persons with mental disabilities, and the right to information.
13. All countries should sign and ratify the European Social Charter, including optional Protocol X, the collective complaint mechanism. Article 11 of the European Social Charter states that “[e]veryone has the right to benefit from any measures enabling
him to enjoy the highest possible standard of health attainable.” Article 13 continues: “[a]nyone without adequate resources has the right to social and medical assistance.”213 The collective complaints procedure allows individuals and/or NGOs to bring a complaint to the Committee, and if the Committee deems the complaint to be admissible, it will hear the merits, and issue a decision. The European Council of Ministers will subsequently adopt a resolution. Such a mechanism would facilitate the activism/involvement of human rights organizations and users’ organizations.
To Psychiatric Hospitals and Social Care Homes:
1. Make (and monitor the implementation of ) clear directives regarding the implementation of national legislation relating to patient’s rights, prohibitions against inhuman and degrading treatment, the right to informed consent, and so on. In cases where national law is adequate, failures often occur in implementation.
Staff members are either unaware of national policies;
or they decide for reasons of time, lack of understanding about importance, or stigma, not to implement them.
Dissemination of directives should be accompanied by training, as well as clear retribution for not following directives.
2. Develop rehabilitation and occupational therapy programs as well as individualized rehabilitation plans for all residents. Staff in institutions should re-direct some of their time and energy from caretaking to rehabilitation. Programs should include a range of services, and should respond to a range of abilities. All persons residing in an institution should have a plan for rehabilitation that corresponds to their needs and capacities.
212 Convention on Human Rights and Biomedicine. Article 1. http://conventions.coe.int/
treaty/en/treaties/html/164.htm
213 European Social Charter, Council of Europe. Available online at http://conventions.coe.
int/treaty/en/treaties/html/163.htm Accessed April 15, 2004.