Simons Searchlight Transition to Adulthood Resource Hub

Depending on your family’s situation, continued participation may look different:

• Independent adult: If the participant makes their own research participation decisions, they will create their own account, use their own email address, and provide their own consent.
• Legal representative: If another adult has legal authority to make research decisions on the participant’s behalf, that person will complete the appropriate consent. Requirements and terminology may vary by state or country.
• Still deciding? If your family’s plans or legal arrangements are not finalized, you can return and update your survey responses later.

Important: The participant’s account is paused from new study activities until the survey and required consent are complete. Previously contributed information remains part of the study.

Every family’s path looks different. Explore the Transition to Adulthood resource topics below to find information most relevant to your situation.

Legal Planning and Guardianship:

Legal authority and decision-making responsibilities change when an individual reaches adulthood. Laws, guardianship requirements, disability services, and government support programs vary by country, state, and region.

Explore the resources below to find information about legal planning, guardianship options, developmental disability services, benefits, and other planning supports. We continue to add new resources as they become available.

Exploring Decision-Making and Support Options:

Families may have questions about decision-making and support at different stages of the transition to adulthood. These resources can help you explore available options based on your family’s needs and circumstances.

Healthcare and Medical Planning:

Transitioning from pediatric to adult healthcare can involve changes in providers, insurance coverage, medical decision-making, and care coordination.

Financial Planning and Benefits:

Families may wish to explore financial planning tools and benefit programs that support long-term independence and quality of life.

Education, Employment, and Independent Living:

Many young adults and families explore opportunities related to education, employment, housing, and independent living during the transition to adulthood.

Advocacy and Family Support:

Connecting with other families can provide practical advice, reassurance, and ideas for navigating adulthood. These organizations offer educational resources, peer support, webinars, and opportunities to learn from others with shared experiences.

Every family’s transition to adulthood is unique.

By sharing your experiences, challenges, questions, and successes, you can help us to better understand what families need and to identify additional resources to support others.

Complete the Understanding Pathways to Adulthood Survey

If your family has not yet joined Simons Searchlight, we invite you to learn more about our international research study and how participation helps researchers better understand rare genetic conditions across the lifespan. Learn more.