+1 Recommend
1 collections

      To submit your manuscript, please click here

      • Record: found
      • Abstract: found
      • Article: found
      Is Open Access

      Publicly Funded Home and Community-Based Care for Children With Medical Complexity: Protocol for the Analysis of Medicaid Waiver Applications


      Read this article at

          There is no author summary for this article yet. Authors can add summaries to their articles on ScienceOpen to make them more accessible to a non-specialist audience.



          Children with medical complexity are a group of children with multiple chronic conditions and functional limitations that represent the highest health care utilization and often require a substantial number of home and community-based services (HCBS). In many states, HCBS are offered to target populations through 1915(c) Medicaid waivers. To date, no standard methods or approaches have been established to evaluate or compare 1915(c) waivers across states in the United States for children.


          The purpose of this analysis was to develop a systematic and reproducible approach to evaluate 1915(c) Medicaid waivers for overall coverage of children with medical complexity.


          Data elements were extracted from Medicaid 1915(c) approved waiver applications for all included waivers targeting any pediatric age range through October 31, 2018. Normalization criteria were established, and an aggregate overall coverage score was calculated for each waiver.


          Data extraction occurred in two phases: (1) waivers that were considered nonexpired through December 31, 2017, and (2) the final sample that included nonexpired waivers through October 31, 2018. A total of 142 waivers across 45 states in the United States were included in this analysis. We found that the existing adult HCBS taxonomy may not always be applicable for child and family-based service provision. Although there was uniformity in the Medicaid applications, there was high heterogeneity in how waiver eligibility, transition plans, and wait lists were defined. Study analysis was completed in January 2019, and after analyzing each individual waiver, results were aggregated at the level of the state and for each diagnostic subgroup. The published results are forthcoming.


          To our knowledge, this is the first study to systematically evaluate 1915(c) Medicaid waivers targeting children with medical complexity that can be replicated without the threat of missing data.

          International Registered Report Identifier (IRRID)


          Related collections

          Most cited references26

          • Record: found
          • Abstract: found
          • Article: not found

          Children with medical complexity: an emerging population for clinical and research initiatives.

          Children with medical complexity (CMC) have medical fragility and intensive care needs that are not easily met by existing health care models. CMC may have a congenital or acquired multisystem disease, a severe neurologic condition with marked functional impairment, and/or technology dependence for activities of daily living. Although these children are at risk of poor health and family outcomes, there are few well-characterized clinical initiatives and research efforts devoted to improving their care. In this article, we present a definitional framework of CMC that consists of substantial family-identified service needs, characteristic chronic and severe conditions, functional limitations, and high health care use. We explore the diversity of existing care models and apply the principles of the chronic care model to address the clinical needs of CMC. Finally, we suggest a research agenda that uses a uniform definition to accurately describe the population and to evaluate outcomes from the perspectives of the child, the family, and the broader health care system.
            • Record: found
            • Abstract: found
            • Article: not found

            Increasing prevalence of medically complex children in US hospitals.

            In this study we used national data to determine changes in the prevalence of hospital admissions for medically complex children over a 15-year period. Data from the Nationwide Inpatient Sample, a component of the Healthcare Cost and Utilization Project, was analyzed in 3-year increments from 1991 to 2005 to determine national trends in rates of hospitalization of children aged 8 days to 4 years with chronic conditions. Discharge diagnoses from the Nationwide Inpatient Sample were grouped into 9 categories of complex chronic conditions (CCCs). Hospitalization rates for each of the 9 CCC categories were studied both individually and in combination. Trends of children hospitalized with 2 specific disorders, cerebral palsy (CP) and bronchopulmonary dysplasia, with additional diagnoses in more than 1 CCC category were also examined. Hospitalization rates of children with diagnoses in more than 1 CCC category increased from 83.7 per 100,000 (1991-1993) to 166 per 100 000 (2003-2005) (P[r]<.001). The hospitalization rate of children with CP plus more than 1 CCC diagnosis increased from 7.1 to 10.4 per 100 000 (P=.002), whereas the hospitalization rates of children with bronchopulmonary dysplasia plus more than 1 CCC diagnosis increased from 9.8 to 23.9 per 100,000 (P<.001). Consistent increases in hospitalization rates were noted among children with diagnoses in multiple CCC categories, whereas hospitalization rates of children with CP alone have remained stable. The relative medical complexity of hospitalized pediatric patients has increased over the past 15 years.
              • Record: found
              • Abstract: found
              • Article: not found

              Children with medical complexity and Medicaid: spending and cost savings.

              A small but growing population of children with medical complexity, many of whom are covered by Medicaid, accounts for a high proportion of pediatric health care spending. We first describe the expenditures for children with medical complexity insured by Medicaid across the care continuum. We report the increasingly large amount of spending on hospital care for these children, relative to the small amount of primary care and home care spending. We then present a business case that estimates how cost savings might be achieved for children with medical complexity from potential reductions in hospital and emergency department use and shows how the savings could underwrite investments in outpatient and community care. We conclude by discussing the importance of these findings in the context of Medicaid's quality of care and health care reform.

                Author and article information

                JMIR Res Protoc
                JMIR Res Protoc
                JMIR Research Protocols
                JMIR Publications (Toronto, Canada )
                July 2019
                25 July 2019
                : 8
                : 7
                : e13062
                [1 ] University of Virginia School of Nursing Charlottesville, VA United States
                Author notes
                Corresponding Author: Jessica Keim-Malpass jlk2t@ 123456virginia.edu
                Author information
                ©Jessica Keim-Malpass, Lisa C Letzkus, Leeza Constantoulakis. Originally published in JMIR Research Protocols (http://www.researchprotocols.org), 25.07.2019.

                This is an open-access article distributed under the terms of the Creative Commons Attribution License ( https://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work, first published in JMIR Research Protocols, is properly cited. The complete bibliographic information, a link to the original publication on http://www.researchprotocols.org.as well as this copyright and license information must be included.

                : 7 December 2018
                : 21 March 2019
                : 14 June 2019
                : 5 July 2019

                medicaid,children with medical complexity,home and community-based services,policy analysis,economic evaluation


                Comment on this article