An Exploratory Needs Assessment of Medically Fragile Adults with Intellectual and Developmental Disabilities (IDD) Receiving Homecare who Transitioned from Childhood: Results and Implications

Medical technologies and care advances have begun extending the lives of medically fragile children with Intellectual and Developmental Disabilities (IDD) so they now can live far into adulthood. Consequently, medically fragile adults with IDD—with their unique characteristics, needs, and problems—are a growing special needs population about which little is known. Speculation about this population is based on data about medically fragile children with IDD, but this adult population is different. This article reports on an exploratory needs assessment study of demographics / characteristics, issues, needs, and cost of 50 (N=50) medically fragile adults with IDD receiving in-home care and 28 of their family members. Data were derived through a targeted sample from a public-sector IDD service provider located in the Greater Houston-Galveston metroplex. Need was identified for particularly vital care, services, and materials. Even with a high degree of integration into service / material systems, there were gaps and absences. Notably, there was no reported need for specialized nursing care, but there was need for Home Health Care Aides. There also was a need for Legal Aid and family support groups. Study findings suggested that medically fragile adults with IDD, when cared for at home, require less medical care and more medically informed supervision. Nevertheless, gaps in services / materials should be addressed for the sake of their families, which are critical for their support. Study limitations and future avenues for further study are discussed.