Exploring the Perspectives of Parents and Siblings Toward Future Planning for Individuals With Intellectual and Developmental Disabilities.

Lee et al. (2019) sat down with families who have an adult with intellectual or developmental disabilities.

They asked parents and brothers or sisters to talk about who will care for the adult later in life.

The team recorded the talks and looked for common worries and roadblocks.

Families feel stuck. They do not know how to start planning for future caregiving.

Parents worry services will vanish. Siblings are unsure if they can take over.

Paperwork, long waits, and staff turnover make the fear worse.

Crossman et al. (2018) showed that parent-youth teams do better when they set goals together. Eun’s study widens the lens: after the youth years, the same team still needs a map, but now the system offers even less help.

Jarrold et al. (1994) tried a class that taught adults with ID about retirement. The class filled knowledge gaps but did not calm fears. Eun’s findings echo the gap: information alone is not enough; families also need steady relationships and clear next steps.

McDonald (2012) let adults with IDD speak for themselves. They asked to be treated as partners, not cases. Eun’s families want the same respect from agencies, yet they rarely get it.

You can open the conversation early. Invite siblings to the next ISP meeting. Ask the adult with IDD what living situation feels safe. Write one next step on a shared calendar. Small moves today prevent a crisis when parents can no longer provide care.