Noreen Vance’s sister Angela has severe Down syndrome and needs daily help. Their mother cared for Angela for decades but refused to consider that she might die or become unable to provide care. When Vance tried to discuss the future, her mother shut the conversation down.
There was no plan when their mother suffered a major stroke. The brain injury left her unable to fully grasp her impairment, and she clung to caregiving even though she could no longer manage it. Family chaos followed, and it took years to sort out Angela’s care.
Worry about the long-term fate of a loved one is the top concern for family caregivers of adults with intellectual or developmental disabilities — more than money or safety. In a recent study, 72% of caregivers of people with Down syndrome said they worried about the long term, and 68% worried about what would happen after their own death. It’s especially urgent for families of people with Down syndrome because life expectancy has increased, but many caregivers of adult children, siblings or spouses face the possibility that the person they care for will outlive them. AARP research estimates almost 16 million Americans are in that situation.
Contingency planning is essential, though emotionally difficult. “These are hard, awkward conversations,” Vance says. Katy Schmid, senior executive officer of The Arc, notes families often avoid talking about death and feel overwhelmed by unanswered questions. Experts say creating a plan and revisiting it regularly offers the best chance of stability when circumstances change. Practical steps to get started:
Write yourself a note
Vance and her son now share Angela’s care with others. To avoid her mother’s denial, Vance wrote a letter to her future self: a handwritten pledge that if two trusted friends agreed she wasn’t capable anymore, she would hand over car keys and let others take financial and health decisions. “That’s a great starting point,” says Schmid.
Decide who will be involved
Think beyond closest relatives. Aunts, nephews, friends or long-time professionals may be better positioned or more willing to step in. Who does the person trust? Who should be available to make decisions in a crisis? Vance also involved Angela’s longtime social worker.
Make a list of haves and have-nots
Inventory concrete needs: government benefits, medical supports, housing and other essentials. Note what’s already in place and what still needs to be arranged. Planning ahead gives time to research options.
Write a letter of intent
Work with the person you care for to document routines, habits, preferences, hobbies and personal history. This helps minimize disruption during transition. The National Down Syndrome Society offers guidance on what to include. My Health Passport can help people with disabilities communicate medical needs to providers.
Reach out
Talk to families who have gone through planning. Support groups, online communities, and other caregivers can offer ideas — Vance adopted her letter-to-self idea from another family.
Keep it fresh
Life changes; so should the plan. Set a regular time to revisit it, such as annually.
Dealing with family conflict
Disagreements are common. The cared-for person’s needs and wishes should be the priority. A detailed written plan provides a reference point and can help resolve disputes. “This plan should be something that empowers the individual,” Schmid says.
Explore more resources
The Arc’s Center for Future Planning has templates, videos and webinars to guide creation of a written plan that helps an adult with a disability live the way they want even if a primary caregiver dies. The National Down Syndrome Society’s caregiving guide covers aging and future planning and includes a letter-of-intent form and daily routine record.
Formal planning isn’t easy, but it can prevent the chaos Vance experienced and provide a clearer path for the person who will need care next. The sooner families start, the more options they’ll have and the smoother transitions can be.