Parental caregivers' desires for lifetime assistance planning for future supports for their children with intellectual and developmental disabilities

Future life planning is a growing concern among families with children with disabilities. This article presents a needs assessment evaluating feasibility of a new model for future life planning for family caregivers, Lifetime Assistance, which will provide ongoing planning and monitoring for individuals with intellectual and developmental disabilities. Using surveys informed by a series of focus groups, data were gathered from older and younger parents in one midwestern state regarding the potential program. Study results indicate that respondents did not feel the current system of support was adequate for planning for their child's future, nor sufficient for monitoring the quality of life for their children in the future. Although almost all families had identified a person to support their family members when they were no longer able to do so, parental caregivers overwhelmingly identified the need for the Lifetime Assistance program and many were willing to pay for this service themselves.