UCSF

Medically fragile children, defined as children with life-threatening or life-limiting conditions who require consistent care and medical technology to support or enhance quality of life, have been found to have extensive needs for home and community based services. There is little information on Medicaid home and community-based (HCBS) waivers for medically fragile children in the literature. This study provides a needed foundation to understand the trends and difficulties in developing Medicaid Home and Community-Based 1915c Waivers for medically fragile children.

Methods: Utilizing an adaptation of Anderson’s Behavioral Theory, a secondary descriptive analysis was conducted of secondary data from states for the period of 1999 to 2009 and policy survey data of state officials for 2010 to 2011. Additionally, an in-depth case study of the Medi-Cal HCBS 1915c Waiver Partners for Children in the state of California was completed.

Results: Trends of all Medicaid HCBS 1915c waivers for children across 27 states were analyzed to determine services provided, participant demographics, eligibility criteria, and expenditures. The descriptive analysis and case study illustrated the challenges (barriers), predisposing, enabling, need, and contextual characteristics of the HCBS 1915c waivers for children in the United States. Findings found it that the number of waivers and the funding grew over the 10 year under review; however, wait lists also grew and in some states more restrictive financial eligibility criteria were also employed limiting access. Parent and provider satisfaction were much higher with the provision of services but the frustration with the required paperwork, the delay in reimbursement, and the low reimbursement were all barriers to providers participating in a waiver.

Conclusion: Medicaid HCBS play an important role to support medically fragile children in their home and community, but services appear to lag behind the demand and need for services.