Future Planning and Well-Being for Individuals With Intellectual Disabilities and Family Caregivers

NARecruitingINTERVENTIONAL
Enrollment

1,050

Participants

Timeline

Start Date

December 22, 2023

Primary Completion Date

June 30, 2027

Study Completion Date

April 30, 2029

Conditions
Intellectual Disability
Interventions
BEHAVIORAL

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.

BEHAVIORAL

Attention Control

The control group will have access to a CDC Website, CDC Healthy Living with a Disability.

Trial Locations (1)

11040

RECRUITING

Cohen Children's Medical Center, New Hyde Park

Sponsors

Lead Sponsor

Collaborators (1)

All Listed Sponsors
collaborator

Patient-Centered Outcomes Research Institute

OTHER

collaborator

Baylor College of Medicine

OTHER

collaborator

Christiana Care Health Services

OTHER

collaborator

Children's Hospital of Philadelphia

OTHER

collaborator

Children's Hospital Medical Center, Cincinnati

OTHER

collaborator

Geisinger Health

UNKNOWN

lead

Northwell Health

OTHER