Severity of children's intellectual disabilities and Medicaid personal care services

This research investigated the relationship between a child's reported intellectual disability (ID) level and caregivers' reports of the child's health status to predict Medicaid Personal Care Services (PCS) hours authorized for that child. We also investigated how activity limitations in the home varied with the level of ID.

The sample included 1,108 community-residing children with a reported level of ID in the Texas Medicaid system and who were assessed for the PCS program. All data were collected with the Personal Care Assessment Form (PCAF), an instrument developed by the authors for evaluating children's PCS needs. Case managers completed the PCAF in the child's home with the child and primary caregivers present. Structural equation modeling (SEM) was used to test a model reflecting the role of ID and other characteristics of the child in determining the number of PCS hours authorized. Additional analyses revealed the degree to which variation among the case managers affected the number of hours authorized.

ID level and other individual characteristics had a significant effect on reports of a child's activity limitations (R2 = .67), which in turn affected the hours of PCS authorized (R2 = .27). We found no significant direct relationship between ID level and PCS hours: ID level had an indirect relationship on PCS hours through activity limitations. When the variance in hours authorized was decomposed, individual characteristics accounted for 20% of the variance and case managers accounted for 14%.

Assessments of caregiver and child strengths and limitations in the home are critical in the allocation of Medicaid home-based services, above and beyond the information conveyed by demographic and diagnostic data. Implications for home-based assessments of functional limitations and needs for family caregivers and their children with ID are discussed.