During the transition phase and estate planning, families ought to consider housing options that would best serve the needs of their loved one with tuberous sclerosis complex (TSC).
As these needs will vary among each individual and family it is important to research the options that are available in your area before the time they are needed. While all states receive federal funding to provide these services, options vary from state to state and even municipality to municipality. In some areas, the waitlist is incredibly long – all the more reason why this very important step should be considered proactively during life planning.
There are many things to consider when thinking about housing options such as independent living, independent living community, semi-independent, and institutional programs. Other options could include: 24-hour care facilities including nursing homes long-term living facilities known as LTAC, group homes, or supervised apartments. For those who would live at home there are other options such as skill development and adult day programs.
For those who are ready to learn more of these options please see the Young Adult Life Stages Guide and Adult Life Stages Guide below to get started. For more additional insight please reach out to one of our TSC Support Navigators to help answer direct further questions or concerns.
