Question: I have a 16-year-old daughter with an intellectual disability. What things do I need to think about as she approaches adulthood?
Answer: It is good that you are looking to the future for your daughter and thinking about what she may need as an adult. Developing a plan that will address common things she will navigate as she enters adulthood can reduce stress and prevent unforeseen outcomes. You and your daughter should review her plan regularly and be prepared to make adjustments as you go along. The goal of the plan is to create a guide for your daughter to be able to live her life as independently as possible. Having a plan will help to empower her to thrive with your support and when you are no longer able to be there for her.
A good place to start when developing a plan are your daughter’s interests and goals. What is going to give her joy and help her to achieve a high quality of life? Some of the things you might want to consider are:
- What support does she need day-to-day and how will she get that support in adulthood? This may include help she needs with personal care, meal preparation, managing medications, and transportation.
- Where will she live?
- What is her financial picture? Depending on the situation, you may need to consider consulting an attorney to discuss how to preserve assets she may have without affecting eligibility for funding programs. Think about whether she will need to apply for benefits through Social Security.
- What medical providers will she need to see/have?
- Who will help her with decision making, including health care and financial decisions? A parent does not automatically continue as decision maker once their disabled child turns 18. There are different options for decision support which would be dependent on your daughter’s capability. This can range from decision support all the way up to legal guardianship.
- Will she need to access funding programs to pay for the support or services that she may need?
This list is not all-inclusive, but an initial starting point.
There are many resources that you can use for future planning. The ARC is an organization that advocates for individuals with intellectual and developmental disabilities. They offer suggestions on future planning in this article: https://futureplanning.thearc.org/pages/learn/future-planning-101
The University of Arizona’s Sonoran University Center of Excellence in Developmental Disabilities Education, Research, and Service has developed a tool for family caregivers to develop a future plan.
This tool provides a framework for developing a plan and helps you to document areas of need for your daughter or areas that need attention or planning.
The Wisconsin Regional Center works with children from birth to age 21. They can provide information on resources for children with physical, behavioral, developmental, emotional illness, or a condition which is expected to last from one year to a lifetime. You can call the Northeast Region office at 1-877-568-5202.
You can also talk to an Information and Assistance Specialist at ADRC to learn about local resources that can help your daughter in transitioning to adulthood. These resources are geared to individuals age 17 1/2 and older with physical and cognitive disabilities. Every story matters and a specialist can sit down with you and your daughter to learn about her unique situation to provide options they you and she may want to consider. Call us at (920) 448-4300 to get connected.
