Before Age 18: What NDSC Says About Guardianship and Its Alternatives for Teens with Down Syndrome

As a child with Down syndrome approaches age 18, many families start wondering whether they need to pursue legal guardianship. The National Down Syndrome Congress (NDSC) has a clear position on this, published in its Position Statement on Guardianship for Individuals with Disabilities.

What guardianship actually is

According to NDSC, guardianship is a state legal process where a court removes some or many of the legal and decision-making rights from an individual and transfers all or some of them to another person. It’s a highly intrusive measure and shouldn’t automatically be the default starting point.

NDSC’s position: consider less restrictive options first

The organization is explicit: less restrictive means of decision-making support should be considered before the use of guardianship is considered as an option. Among those alternatives, NDSC lists health-care proxies, advance directives, supported decision-making, powers of attorney, and other representation agreements.

A central point of the document is that the young person’s own involvement isn’t a secondary detail: optimal engagement of the individual with Down syndrome is critical to this process. In other words, any legal plan should be built around listening to what the person wants for their own life, not only what the family considers safest.

Why this matters specifically in adolescence

The transition to legal adulthood doesn’t happen overnight — it’s prepared for. Exploring the differences between guardianship, powers of attorney, and supported decision-making during adolescence (ideally before age 17-18) allows families to make informed choices instead of defaulting to the most restrictive option out of unfamiliarity or time pressure. It also creates space for teens themselves to participate in conversations about their health, finances, and daily life, building self-determination skills before reaching the age of majority.

What can you do now?

• Read NDSC’s full Position Statement on Guardianship to understand the legal language and available alternatives.
• Research what supported decision-making options exist in your state or country, since laws vary by jurisdiction.
• Talk to a disability planning attorney, and where possible, include your teen in the conversation about what kind of legal support they’d prefer.

Leer la Declaración de Posición sobre Tutela Legal (PDF, NDSC) →

⚠️ This isn't legal advice. Laws change and vary by country or state — consult a lawyer licensed in your jurisdiction for your specific situation.