With us not for us: World Down Syndrome Day campaign for the right to legal capacity: 3 things to know

By Jessica Tuman, VP, Voya Cares and ESG Practice COE

Each year, World Down Syndrome Day chooses a theme to generate conversations about important issues related to the lives of people with Down syndrome. This year, the focus is on their right to make their own decisions, working with others to improve their lives.

Generally, the law starts with an assumption that if a person is an adult (over the age of majority, which is 18 in most states), they have legal capacity to make decisions.

By definition, having capacity means that a person must be able to understand the nature and effect of their action. Importantly, a people’s level of functioning is not compared against any universal standard, or even against their peers.

Most people agree that everyone deserves the right to make these types of decisions for themselves when they have the legal capacity to do so. The U.N. Convention on the Rights of Persons with Disabilities in Article 12 recognizes that ‘persons with disabilities enjoy legal capacity on an equal basis with others in all aspects of life’ and that governments must take measures to assist individuals in exercising their capacity.

World Down Syndrome Day on March 23 (3/23) — a date selected because Down syndrome is a congenital disorder caused by having an extra (3 instead of 2) 21st chromosome — is raising awareness of the desire for decision-making capacity of those with Down syndrome. The Down Syndrome International network is launching this awareness campaign using the phrase “With us not for us,” adding that people with Down syndrome often have poor or controlling support. Raising awareness can help change this support model. With that in mind, here are 3 things to know about legal capacity:

1. Understand how legal capacity is determined.

As the term indicates, legal capacity is determined by a legal professional. Multiple areas of competency may be addressed in legal settings, including the ability to understand the ramifications of

1. Standing trial
2. Being a parent
3. Making a will
4. Signing a contract
5. Making health care decisions

When reaching adulthood, some individuals may need help making decisions on how to manage finances or make decisions on medical care. They may need a loved one or advocate to step in and provide input on decisions or make decisions on their behalf.

Judges determine the level of competency, sometimes after input from medical professionals, family members and other advocates who can provide input regarding a person’s ability to make appropriate decisions.

2. Determine the level of support that may be needed.

To help make this determination, caregivers may answer the following questions, along with input from the young adult with Down syndrome:

• Can the young adult make their own decisions — personal, financial and medical?
• How will the young adult’s medical prognosis change over time, and how will those changes affect their lifestyle, financial situation and ability to make decisions?
• What are the young adult’s hopes for their lifestyle and care when the caregiver(s) is no longer able to provide assistance?

The responses to the above questions can help determine what level of support the young adult with Down syndrome may need with decision-making, if any. Young adults who lack decision-making capacity may need a legal guardian or conservatorship when they reach the age of majority. These arrangements typically require a court proceeding, and essentially remove the rights of the individual and give their decision-making authority to a third party.

Whether or not guardianship is established should be based on the needs and abilities of the young adult. In most states, the “least restrictive alternative” is an important standard, meaning that guardianship or conservatorship should be limited or only applied if necessary. If guardianship is found to be too restrictive, the use of less restrictive choices should be considered, like Supported Decision-Making (SDM), which is a growing alternative to guardianship. SDM is a tool that allows people with disabilities to retain their decision-making capacity by choosing supporters to help them make choices. An SDM agreement selects trusted advisors, such as friends, family members, or professionals, to serve as supporters.

3. Put the correct legal documents in place.

Legal documents may be required to grant someone else the authority to act on behalf of another. In general, in order to establish legal guardianship, a petition for appointment of legal guardianship must be filed with the probate court. After a court proceeding, if it is determined that guardianship is appropriate, a judge will appoint a guardian.

In addition, future plans and wishes can be documented in a will or a letter of intent.

Creating a Letter of Intent (LOI) can be a great way to document goals, potential care needs, location of legal documents and important contacts. An LOI can be created without an attorney or additional costs but can complement other important documents.

This World Down Syndrome Day’s theme of ‘With Us Not For Us’ can help this community push for support that respects the right to make their own decisions about their lives that other people take for granted, such as where and with whom they live, their healthcare, getting married, having a family, controlling their own money and being able to own property. Get involved today to raise awareness and create a single global voice advocating for the rights, inclusion and well-being of people with Down syndrome.