When Noreen Vance began worrying about her sister Angela’s future, she discovered how hard it can be to plan for a loved one with severe Down syndrome. Their mother had cared for Angela for decades and refused to consider that she might die or become unable to continue. When the mother had a major stroke there was no plan; the injury left her confused but clinging to caregiving, and the family endured years of chaos while they worked out Angela’s care.
That story is common. Worry about what will happen long-term is the top concern for family caregivers of adults with intellectual or developmental disabilities—more than finances or immediate safety. In one 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. As life expectancy for people with Down syndrome has increased, many caregivers face the real possibility that the person they care for will outlive them. AARP estimates nearly 16 million Americans are in a similar situation.
Contingency planning is emotionally difficult but essential. Families often avoid the topic because it feels awkward or overwhelming, yet having a written plan and revisiting it regularly gives the best chance of steady care and smoother transitions if circumstances change. Practical steps to begin:
1) Make a commitment to act
Write something to yourself—Noreen Vance wrote a handwritten pledge that if two trusted friends agreed she was no longer capable of providing safe care, she would hand over car keys and let others take financial and health decisions. A simple, personal statement like this creates an actionable starting point and helps overcome denial.
2) Decide who will be involved
Look beyond immediate family. Longtime friends, aunts or nephews, neighbors, and trusted professionals (social workers, case managers) may be better positioned or more willing to step in. Think about who the person you support trusts, who knows their routines, and who could make decisions in a crisis.
3) Inventory what you have and what you need
Make a practical list of benefits, medical supports, housing arrangements, daily routines, legal documents, and other essentials. Note what’s already in place and what still needs to be arranged. This helps you prioritize next steps and gives time to research options.
4) Create a letter of intent
Work with the person you care for to document daily routines, preferences, likes and dislikes, medical history, communication needs, favorite activities, and personal background. A clear, compassionate letter of intent minimizes disruption during transitions and gives new caregivers important context.
5) Use communication tools for health care
Tools like My Health Passport can help people with disabilities communicate medical needs and preferences to providers. Collect up-to-date medical records, medication lists, appointment schedules, and contact information for key providers.
6) Learn from others and seek support
Talk with families who have already planned. Support groups, online communities, and peer caregivers can share practical ideas and templates—Vance adopted her letter-to-self strategy after hearing about it from another family. Professional organizations can also direct you to local resources.
7) Put plans in writing and revisit them regularly
A plan is only useful if it’s accessible and current. Keep documents in a safe but reachable place and schedule regular reviews—for example, annually or whenever health, finances, or living arrangements change.
Managing family conflict
Disagreements about future care are common. Prioritize the needs, preferences, and best interests of the person receiving care. A detailed written plan provides a neutral reference and can reduce disputes. Include the cared-for person in decisions to the extent they can participate; a plan that reflects their wishes is empowering and more likely to be respected.
Formal planning options and resources
– The Arc’s Center for Future Planning offers templates, videos, and webinars to help families create written plans that support an adult with a disability living the way they want even if a primary caregiver dies.
– The National Down Syndrome Society provides a caregiving guide on aging and future planning that includes a letter-of-intent form and daily routine records.
– My Health Passport and similar tools help communicate medical needs to health providers.
Why start now
Formal planning isn’t easy, but it reduces the risk of the kind of prolonged disruption Noreen Vance experienced. The sooner families begin, the more time they have to explore housing, guardianship or supported decision-making options, financial strategies, and trusted caregivers. Starting early leaves more choices and allows transitions to happen with less stress.
If you care for an adult with intellectual or developmental disabilities, begin by writing down current needs and a simple next-step plan. Involve trusted people, collect essential documents, and schedule regular check-ins on the plan. Even small steps taken now can create stability and protect the person you love when circumstances change.