Thanks to Down Syndrome South Africa for providing this information.

The current situation

While South Africa is working towards domesticating the UNCRPD, there are still many laws that do not support persons with Down syndrome to vote, to make decisions around their own finances, with whom they choose to live and to make decisions around their healthcare.

Legal capacity is complex and costly as it is guided by the curatorship or guardianship system. This means that a person with Down syndrome or a family member must apply to the Master of the High court to gain the right to make decisions. The judge can appoint a guardian who has no personal connection with the person, in the belief that they are acting in the best interest of a person with Down syndrome but are not (effectively substituting decision-making).

In 2015 the South African government appointed the South African Law Reform Commission to draft a bill in support of supported decision-making, to date that draft bill still sits on the desk at the Department of Justice.

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Stories.

Most of our struggle's center around guardianship when there is a divorce or a death.

This is Karel's story - in 2021/2022 Karel's mum died from Covid-19 and his step-dad and his biological dad refused to take responsibility for his care. They also refused to pay for his care at a facility so this left Karel without any support.

His sister Ange was living in Slovenia with her family and because she was not recognised as Karels legal guardian, she could not bring him to Slovenia to take care of him.

Ange had to go through various lawyers and to the Master of the High Court to make an application to become Karel's Legal guardian.

R60 000 later and after going through 15 lawyers, Ange was eventually granted legal guardianship, in all this not once was Karel asked who he would prefer to live with.

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What needs to change?

Legislation changed in terms of the mental Health Care Act and the Criminal Procedure Act, specifically in relation to persons with intellectual and psychosocial disabilities as they are deemed incompetent in giving evidence either as a witness, complainant or accused. Cases around physical and sexual abuse are not prosecuted in court of law. The draft bill around supported decision making must be expediated to parliament to be signed.

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

Taken from the Concluding observations report, 2018:

Concerns.

• The current guardianship and mental health laws, which maintain a substitute decision-making regime, and the absence of legislation and supported decision-making mechanisms for persons with disabilities that uphold the autonomy, rights, will and preferences of persons with disabilities in all areas of life;
• The lack of data on persons with disabilities under guardianship, disaggregated by age, gender and type of impairment.

Recommendations.

• Repeal all legislation that allows for substitute decision-making, and adopt legislation on supported decision-making and measures to strengthen data collection in this respect, disaggregated by age, gender and type of impairment;
• Provide training, in consultation with representative organizations of persons with disabilities for all stakeholders, including their families and community members, civil servants, judges and social workers, on recognition of the legal capacity of persons with disabilities and on existing good practices in supported decision-making.

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Take action.

Contact Down Syndrome South Africa to support this campaign in your country.