1,050
Participants
Start Date
December 22, 2023
Primary Completion Date
June 30, 2027
Study Completion Date
April 30, 2029
Map Our Life
The intervention takes participants through the process of planning using the Preparation for Future Care Model stages: care expectation, awareness, information gathering, decision making, and concrete planning. The intervention has 8 modules: (1) Letter of Intent for Your Loved One, (2) Caregiver Support and Well-Being, (3) Medical Decision Making for Your Loved One, (4) Daily Routines and Medical Management, (5) Medicaid Waiver for Your Loved One, (6) Financial Planning for Your Loved One, (7) Emergency Planning for Your Loved One, and (8) Managing Jobs, Day Programs, and Transportation. Map Our Life takes users - the caregiver alongside the individual with intellectual disability - through the stages of planning in each of the 8 modules until a concrete care plan is developed. The last component of the intervention is that this Care Plan is subsequently saved and shared with others such as care managers, clinicians, friends or family members.
Attention Control
The control group will have access to a CDC Website, CDC Healthy Living with a Disability.
RECRUITING
Cohen Children's Medical Center, New Hyde Park
Lead Sponsor
Collaborators (1)
Patient-Centered Outcomes Research Institute
OTHER
Baylor College of Medicine
OTHER
Christiana Care Health Services
OTHER
Children's Hospital of Philadelphia
OTHER
Children's Hospital Medical Center, Cincinnati
OTHER
Geisinger Health
UNKNOWN
Northwell Health
OTHER