Thanks to Public Organisation "Open Hearts" for providing this information.

The current situation

The state policy of Tajikistan is aimed at improving the quality of life of all children, including children with Down syndrome and other disabilities.

However, we have been working with families of people with Down syndrome since 2008, and we have seen the discriminatory approach of local legislation and lack of Human Rights approaches.

As a result, people with Down syndrome and other disabilities are unable to access necessary community health and social care, education and other necessary components for well-being services.

In our country, the medical model of disability prevails. 

People with Down syndrome face many barriers to the protection of their own rights. They are not recognised as persons before the law.

Even during pregnancy, families face strong stigma and are often forced to abort, even without a certain diagnosis.

In 2021, the Ministry of health and social protection approved the Clinical guide to support families of children with Down syndrome through yearly years and lifelong.

This Guide is just in the early stages. They are in the process of capacity-building healthcare to use the Human Rights approach in the provision of health and social care.

People with Down syndrome do not have the right to make decisions about their own care. In most care settings, parents, close relatives or people who were appointed as guardians make all decisions on behalf of people with Down syndrome.

There is no system to support decision-making for people with Down syndrome and other intellectual disabilities in our country.

People with Down syndrome never have a right to vote as they do not have legal capacity.

What needs to change?

At Open Hearts we work closely with the Ministry of health and social protection in developing health and social protection services for children with Down syndrome and other disabilities in Tajikistan.

We also work with other Public Organisations, and UNICEF within the health sector, to develop normative documents:

  • Early Childhood Intervention standards;
  • Clinical guide for support of children, youth and people with Down syndrome in health and social care services;
  • Clinical Guide for support of children and youth with Autism.

We are working with the Ministry of Education on developing Inclusive Education in Tajikistan and the development of educational courses to be included in Teacher Training.

We have Family and Child support Centers in Dushanbe, Khorog GBAO (since 2020) region and Shartitus Khatlon (January 2023).

In Tajikistan, the development of programs for children with intellectual disabilities is at an early stage and in this regard, the advantage of our country is that we can learn from many excellent international practices that over the years have improved and advanced learning from their mistakes and victories.

Hence, our country taking into account of the experience of others, we have an opportunity to develop the most effective system of care for children with intellectual disabilities.

The following steps could be considered:

  • Identify the needs of children with mental health needs and existing barriers to mental health care;
  • Review and analyse the mental health legislation in terms of the Human Rights approach;
  • Negotiate for changes involving all stakeholders;
  • Advocate for Human Rights and Mental health legislation;
  • Combine the efforts and strengthen the cooperation of Public Organizations, state institutions of health, social protection and educational field, and local governments, with the aim of promoting the programs of care for children with mental disabilities in the country;
  • Create the Coordination Unit from the members of Public Organizations, and State institutions to conduct monitoring of the implementation of programs based on the CRC and local legislation, within the country.

Tajikistan signed the CRPD and there is a need for ratification of this important document.

In addition, it is recommended that the Law of the Republic of Tajikistan on Social Protection of Persons with Disabilities and the Law on Child protection should be reviewed and amended based on CRC and CRPD, into a comprehensive law on the rights of children. This law should cover all relevant sectors – health, rehabilitation, social protection, and education and specify mechanisms for coordination, decision-making, regular monitoring and reporting and control of resources.

Take action.

Contact Public Organisation "Open Hearts" to support this campaign in your country.