Thanks to Parents of Down Syndrome Association and ALAN T21 for providing this information.

The current situation

In India, it is usual for parents or guardians to make decisions on behalf of a person with Down syndrome.

The National Trust Act enforces a legal guardian for every individual with Down syndrome above the age of 18.

Families can open a bank account in the name of a person with Down syndrome or create a Trust for their benefit. Spending money is controlled by the family member.

Adults with Down syndrome can vote in India.

A very small number of people with Down syndrome are supported to make their own decisions and live relatively inclusively in society. These are a minority of the Down syndrome population in India.

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What needs to change?

We organise public awareness programs to ask the government and other public agencies to recognise the rights of persons with Down syndrome.

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What the Committee on the Rights of Persons with Disabilities report says.

Taken from the Concluding Observations report, 2019:

Concerns.

• The Rights of Persons with Disabilities Act (sect. 14) allows for “limited guardianship” and a “system of joint decision” affecting persons with disabilities.
• The State party understands guardianship as a form of support (CRPD/C/IND/Q/1/Add.1, para. 62), a perception that is not in accordance with the Convention.
• There is an absence of measures to introduce supported decision-making.

Recommendations.

• Eliminate all types of guardianship from national and state legislation and practices.
• Introduce supported decision-making systems that are respectful of the autonomy, will and preferences of all persons with disabilities and provide information to persons with disabilities about these systems.
• Raise awareness in society, including families of persons with disabilities, about the right to equal recognition before the law, and about how to realize the right to legal capacity of persons with disabilities.
• Train public officials on the right of persons with disabilities to equal recognition before the law and on supported decision-making arrangements, in line with the Convention.

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Take action.

Contact Parents of Down Syndrome Association and ALAN T21 to support this campaign in your country.