Thanks to Stichting Downsyndroom for providing this information.

The current situation

People with Down syndrome are recognised as persons before the law. A diagnosis of Down syndrome would not remove a person's legal capacity. A judge in a court may make an informed decision if a person should be restricted (or supported).

There are three possible regulations:

Curatele.

Curatele means that the person with Down syndrome needs permission from the curator for legal actions (for instance, to get married), financial decisions and care-related and medical decisions.

For medical decisions, it is the doctor's duty to determine for every new situation.

Curatele is a regulation that the court tries to avoid, but in some situations, it is used. It is the most restrictive measure, but also gives the most protection against abuse.

Mentorschap.

Mentorschap is only for decisions about care and medical procedures. The mentor has the right to be involved in decision-making, but the person with a disability must also be heard.

The law states that the mentor should be a person of trust and not a boss.

Bewindvoering.

Bewindvoering is when a person takes the responsibility for (larger) financial decisions. This is restrictive but also protective.

If someone is under curatele or bewindvoering, third parties are unable to abuse them (for example, selling the person's posessions) as the payment will be illegal without the consent of the curator or bewindvoerder.

Often family members perform the role of mentor/bewindvoerder/curator.

If you are under curatorschap, the curator (or curators) also has the tasks of mentor and bewindvoeder.

You can have no curator, and a combination of mentorschap and bewindvoering, or one of the two.

The law intends that the curator, bewindvoerder and certainly mentor help with supported decision making. It is not clear if there are suitable checks that this always happens.

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What needs to change?

There is a conflict between care organisations (for example, supported work or supported living) and the assigned curator/mentor. For example, this happens when the curator/mentor is trying to support the person with Down syndrome to make decisions for themselves. The role of the curator/mentor is sometimes ignored by people who work in care.

Care organisations can go to court to remove the rights of curators/mentors that they find too critical. A judge can take away the curatorschap or mentorschap or bewindvoering. Judges do listen more to these professional organisations than to the families. 

This means that the curator/mentor must be very cautious in asking for improvements.

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

Taken from the initial report, 2022:

• The State party must abolish substitute decision-making regimes, such as protective administration, mentorship and tutelage, and replace them with supported decision-making, which protects the freedom and equality of persons with disabilities on an equal basis with others and respects the will and preferences of persons with disabilities.
• The State party must provide data, disaggregated by age, sex and impairment type, on persons under substitute decision-making regimes, such as protective administration, mentorship and tutelage.

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Take action.

Contact Stichting Downsyndroom to support this campaign in your country.