Why Planning Is Different for Aging Caregivers and Aging Adults with IDD

Many families experience a “double-aging” reality: the caregiver is aging while the adult with intellectual and developmental disabilities (IDD) who they are caring for is also aging. Supports may need to change over time, and systems like housing and services often require long lead times. When it comes to planning for future transitions in the life of an adult with IDD, a dedicated, proactive approach to planning can help ensure the individual’s autonomy will be protected when transitions take place, while also giving peace of mind to the caregiver.

Common transition triggers

Transitions often happen quickly, even when families intend to plan later. Common triggers include:

  • Caregiver illness, injury, hospitalization, or death
  • A major health event for the person with IDD
  • New or increasing support needs at home or in the community
  • Loss of a key DSP or provider
  • Housing instability (lease change, unsafe home, eviction risk)
  • A long waitlist opening and decisions needing to happen fast

Aging-related changes can look different in IDD

Depending on disability, lifelong health history, and supports, changes may include:

  • Mobility and balance changes (falls, fatigue, pain)
  • Sensory changes (hearing/vision) that affect communication and daily functioning
  • Mental health changes (anxiety, depression, grief, stress)
  • Dementia risk that may be higher for some conditions 

Behavior changes that may signal unmet needs (pain, fear, communication barriers)

What planning helps protect

A strong plan supports continuity of:

  • Daily routines and meaningful activities
  • Key relationships and community connection
  • Cultural and spiritual values
  • Communication preferences
  • Choice, autonomy, and dignity

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