Infants & young children with special health care needs: Characteristics and PCS needs

Introduction: The personal care service (PCS) needs of infants and young children can be difficult to determine. These children may not follow a traditional developmental trajectory, further complicating their needs assessment. Failure to identify the needs of these young children adversely affects their subsequent health potential.

Methods: Data were descriptively analyzed from the 2009 and 2010 assessments of children aged 0-3 receiving PCS assistance at home through the Texas Medicaid program. Children were assessed by trained case managers using the Personal Care Assessment Form (PCAF 0-3).

Results: The sample included 412 children. The average age was 30 months, and case managers authorized an average of 21.7 hours of PCS per week. The ADLs most frequently impacted by the infant's condition were meal preparation & laundry while the IADLs most frequently impacted were bathing, dressing, eating and toilet use.

The most common medical diagnoses were asthma/respiratory disorders and epilepsy or other chronic seizure disorders. A third of these children had developmental delay. The most common nursing needs were feeding tube and medication management. Two-thirds of these children needed physical therapy, occupational therapy or speech therapy. A fifth of these children had an ER visit or an urgent physician visit in the past month.

Conclusion: This study is an important first step in understanding the PCS needs of infants & young children with special health care needs. The results describe the characteristics and needs of this vulnerable population. Further research will focus on factors that influence determination of PCS hours by caseworkers.