November 4, 2024
Down Syndrome
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March 21st is World Down Syndrome Day (WDSD), this global awareness day has been officially observed by the United Nations since 2012. The date for WDSD, being the 21st day of the 3rd month, was chosen to signify the uniqueness of the triplication (Trisome 21) of the 21st chromosome which causes Down syndrome.

Down syndrome is the most common occurring genetic condition caused by a full or partial extra copy of chromosome 21, commonly referred to as Trisome 21. This extra chromosome causes delay in both physical and cognitive development.

In South Africa we are fortunate to celebrate this event together with Human Rights Day. This year’s event is celebrated under the theme “With Us Not for Us” and we will be throwing the spotlight on three key issues:
1. Understanding the right to legal capacity
2. Good practices in supported decision-making
3. Easy to understand communication

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The Constitution of the Republic of South Africa (Act 108 of 1996) protects the rights and dignity of people with disabilities and promotes and supports the full equalization of opportunities of people with disabilities; and their integration in society; within a social model and human rights policy.

1. Understanding the right to legal capacity The right to legal capacity is the ability to bear rights and responsibilities, Article 12 of the Convention on the Rights of Persons with Disabilities, CRPD (recognises that persons with disabilities should “enjoy legal capacity on an equal basis with others in all aspects of life” but that disability alone does not justify the deprivation of legal capacity).

Persons with Down syndrome face multiple forms of discrimination, they can be dehumanised and ostracised due to the stigma attached to impairment. Denial of their legal capacity in opening up a bank account, entering into a legal marriage, buying or leasing property are just some of the barriers they face in exercising their individual autonomy. Legal transactions entered into by persons with intellectual disabilities are considered void, i.e. lacking in legal status, unless they are supported by a guardian or curator.

In South Africa the right to legal capacity in civil and criminal proceedings has been linked to the question as to whether a person has a “consenting mind” – the required decision-making capability. According to law, persons with intellectual disabilities are considered incompetent in civil law. Equality before the law is a basic human right therefore, in the law of evidence they should be treated as competent witnesses, but are not.

2. Good Practices in supported decision – making In South Africa legal capacity can be restricted by a judge at the High Court through a guardianship or curatorship order, referred to as substituted decision-making. This essentially means that the judge can decide that the person with an intellectual disability is incapable of making informed decisions and will therefore appoint someone on the grounds that they will act in the person’s best interest. In order to make the decision, the judge is guided by multiple lawyers appointed in different capacities. This comes at a huge financial cost to families as this process can cost anything between R20 000- R65 000, because an attorney and two advocates must be involved. It also does not provide for assistance to the person with an intellectual disability by someone close to the person, but leaves complete responsibility for decisions and approvals to lawyers, effectively substituted decision-making, and not supported decision-making.

Good practice would dictate that the current curatorship or administratorship systems (substituted decision-making) be amended and extended to provide for a supported decision-making process. In 2015 the South African government commissioned the South Africa Law Reform Commission to draft a bill in support of supported decision-making, but to date that bill still sits on the desk at the Department of Justice.

Supported decision-making and individualised care and support can help persons with Down syndrome overcome their
limitations across compromised domains.

3. Easy to understand communication
Due to the extra chromosome most children and adults with Down syndrome have communication difficulties. These difficulties can become contentious regarding admissibility of evidence when testifying in a court of law either as a witness, complainant or an accused.

Most cases of abuse, be it physical or sexual, involving persons with Down syndrome are most likely not able to proceed to a court of law. Investigation entails skill and careful assessment of the complainant and the charges, which does not necessarily exist at every police station. The police and prosecutors use the ability of the person with Down syndrome to effectively communicate in a court of law as a key requirement of being able to prove the case beyond a reasonable doubt instead of relying on the first report witness, possible medical reports and other expert evidence that may be brought to court in addition to what reasonable accommodations are made available for the complainant with Down Syndrome to be able to give evidence effectively.

Persons with Down syndrome may have limitations in advocating for themselves and ensuring that their rights are protected, but it remains the responsibility of each one of us to ensure that we provide the correct support and accommodations for them to experience the same rights to liberty and freedom and to enforce those rights.

OUR CALL TO ACTION
In March we will be calling on government and the wider public:
• To show support by ensuring that persons with Down syndrome are supported in enforcing their rights to legal capacity;
• Relevant government authorities to fast track the draft bill on supported decision – making by getting the bill to parliament for signing;
• Making information available in easy-to-understand language, developing augmentative and alternative communication guides within the courts;
• Sensitization training of all police officers and court officials to understand intellectual disability, how to effectively communicate and to elicit testimony from a person with an intellectual disability.

Throughout March we will be sharing key messages on legal capacity, good practices on supported decision-making and easy-to-read communication. Join this discussion and follow our campaign “With Us not for US” by liking, sharing and commenting on our posts.

Article Submitted: DSSA

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