Caregivers of adults with intellectual or developmental disabilities frequently express concern about the future, particularly regarding the care of their dependents after their own death. A study indicated that 72% of caregivers for individuals with Down syndrome worry about long-term arrangements, with 68% concerned about post-death care. This concern is heightened for families of people with Down syndrome due to increased life expectancies.
Approximately 16 million Americans are in similar caregiving situations.
Developing a contingency plan is identified as crucial, despite the inherent difficulties in discussing these future scenarios.
Planning Suggestions
Developing a comprehensive future plan can provide peace of mind and ensure continuity of care. Here are several suggestions to guide caregivers through this process:
- Write a Personal Note: Caregivers can write a letter to their future selves, outlining conditions for when they might need to step down from caregiving responsibilities. This can include criteria for handing over decisions to trusted individuals.
- Identify Support Network: Determine which individuals, beyond immediate family, should be involved in the dependent's future care and decision-making during crises. This may include aunts, nephews, friends, or social workers.
- Inventory Needs: Create a list of concrete needs for the dependent, such as government benefits, medical support, and housing. Distinguish between existing provisions and those requiring future establishment.
- Develop a Letter of Intent: Collaboratively write a letter detailing the dependent's current living habits, hobbies, daily routines, preferences, and historical information. This document aims to minimize disruption during transitions. Resources such as the Down syndrome society and My Health Passport can assist in this process.
- Connect with Peers: Engage with other families who have navigated similar planning processes, potentially through support groups or online communities, to gain insights and ideas.
- Annual Review: Establish a schedule to revisit and update the plan annually, accounting for life changes.
- Address Conflicts: In cases of family disagreement, the detailed written plan serves as a reference point to prioritize the care recipient's needs and wishes.
Available Resources
Several organizations offer invaluable support and tools for caregivers undertaking future planning:
- The Arc's Center for Future Planning: This organization offers templates to guide families in creating written plans with adult children with disabilities. It includes resources like video collections and webinars covering topics such as employment, housing, and financial planning.
- National Down Syndrome Society: Their caregiving guide addresses aging and future planning, providing a form to assist in creating a letter of intent and a record of daily routines.