Noreen Vance 's beloved sister Angela has severe Down syndrome and needs help with daily life. Their mother cared for her for decades but refused to confront the possibility that she might die before her daughter. Vance tried to talk about the future, but her mom just shut the conversation down.
So there was no plan in place when their mother had a major stroke. Because of the brain injury, she couldn't understand how impaired she was, and didn't want to let go of caregiving even though she couldn't manage it anymore.
Family chaos ensued. And Angela's care took years to sort out.
The number one thing that worries family caregivers for adults with an intellectual or developmental disability isn't money or safety. It's the future. In a recent study, 72% of caregivers for people with Down syndrome said they worried about the long-term, and 68% were worried about what would happen after their own death.
It's an especially acute concern for the families of people with Down syndrome, because people with the genetic condition are living far longer than they once did. But many other people care for someone who could possibly outlive them — an adult child, a sibling or a spouse. Research from AARP shows that almost 16 million Americans are in this situation.
Contingency planning is key but that doesn't mean it's easy, says Vance: "These are hard, awkward conversations." Facing the future may mean confronting difficult questions and frightening scenarios.
"We've seen as we've worked with families, is this fear of even talking about it," says Katy Schmid, senior executive officer of The Arc, a national nonprofit supporting people with disabilities and their families. "Nobody wants to talk about death, and they're overwhelmed with the questions they may not have answers to."
Vance, who eventually took over her sister's care, is now a strong advocate of formal planning. "It gets easier the more you do it," she says. Experts concur that making a plan, and revisiting it regularly, is the best way to ensure stability when the situation inevitably changes. And many organizations provide resources to guide families through the steps. Some suggestions:
Write yourself a note. Vance and her son now care for her sister, along with help from others. To avoid the scenario with her mom, who couldn't recognize that she was no longer capable of taking care of Angela, wrote her future self a letter. In this handwritten pledge, she told herself that if two trusted friends agreed that she wasn't up to it anymore, she would hand over her car keys, and let others make financial and health decisions. "That's a great starting point," agrees Schmid.
Decide who will be involved. Besides you and the person in question who needs support, who else will be involved in their future? That might not necessarily be the closest family—sometimes aunts, nephews or even friends are more willing to step up. Who does your family member trust the most, and who should be on call to help make decisions during a crisis? In Vance's case, she also brought in her sister's social worker, who has known her a long time.
Make a list of haves and have-nots. Think about the concrete basics that your person will need if you are gone, such as government benefits, medical support, and housing. List which are already in place, and which you need to set up for the future. Planning ahead means that you have time to think it through and research options.
Write a letter of intent along with the person you care for that describes how they live today—habits, hobbies, daily routine, preferences—and something about their history, to help minimize disruption during a transition. The Down syndrome society has advice about what this letter could include. My Health Passport can also be useful to help anyone with a disability better communicate with doctors and other professionals.
Reach out: Talk to other people who have been through the process, suggests Packard. That might be through a support group for families, or online. For instance, Vance got her letter-writing idea from another family in a similar situation.
Keep it fresh: As life changes, so should the plan. Establish a time to revisit the plan once a year, like taxtime or the person's birthday.
Dealing with drama. It's common for family members to disagree. Ultimately, though, the needs and wishes of the person who needs the care take priority—and that's where a detailed written plan provides a reference point or ultimate authority. "This plan should be something that empowers the individual," says Schmid.
Explore more resources: The Center for Future Planning: The Arc, a grassroots organization for people with disabilities and their families, has a template to walk you through the steps of creating a written plan together with an adult child with a disability. The questions are designed to help everyone figure out the details of ensuring that the person lives the way they want to, even if a main caregiver dies. There's also a video collection of people talking about how they did it, and a library of webinars focused on parts of life like employment, housing and financial planning.
The National Down Syndrome Society's caregiving guide also covers aging and future planning, with a form to help you create a letter of intent and record of daily routines.
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