Children with medical complexity (CMC) are a growing population of medically fragile children (between birth and the age of 21 years) with complex, multisystem disease states; technology dependence; severe functional limitations; complicated treatment regimens and therapies; high utilization of care; and numerous surgical interventions [1-5]. CMC are believed to be extremely susceptible to inequities in health due to access limitations and extreme out-of-pocket financial burden for families [6]. Caring for CMC within a fragmented health care system can be challenging for health care providers [7,8]. Because of numerous hospitalizations, CMC must have care transitions that are coordinated from intensive and acute care settings to ambulatory and community health resources and home care [9]. Caring for CMC at home is a resource- and emotionally intensive experience for families and often results in one partner remaining at the home to provide 24-hour care [3,5,10-13].

There are long-term care funding opportunities for home- and community-based care of CMC; however, each state interprets the eligibility and service provision differently. In many states, long-term care services and support for CMC are provided through the Medicaid Home and Community-Based Services (HCBS) 1915(c) Waivers (implemented through section 1915 of the Social Security Act) and are named such because they allow states to waive certain Medicaid eligibility criteria [14]. HCBS waivers provide states the flexibility to define populations that are high risk based on age and medical condition(s) and to disregard income and resource rules that are traditionally used for Medicaid qualification [15]. All waiver programs must not cost the federal government any more than that if the states did not have the waiver (ie, cost neutrality) [16]. In order to guarantee cost neutrality, states often limit the number of people served under a waiver [16]. Based on the 2013 data, all states reported using cost control measures when implementing the 1915 waivers, such as restrictive functional limitation standards, enrollment limits, or waiting lists, and the average waiting time for services exceeded 2 years [17]. Complicating this financing structure is the fact that children requiring HCBS can be covered through different sources of public and private insurance, which makes overall coverage determination challenging to assess from a policy context [18-25].

To date, no systematic evaluations exist for the Medicaid waiver programs targeted toward children, and there is limited guidance for state policy development and implementation. Previous economic and policy evaluations of the HCBS waiver programs have primarily focused on adult populations and even then, the literature has been incredibly sparse [26,27]. To our knowledge, there is only one systematic evaluation that included services targeted to children and specifically focused on evaluation of 1915(c) waivers for children who received a diagnosis of autism [15,28,29]. Proof-of-concept economic and policy evaluations exist for individual components of home and community-based Medicaid waivers for adults, but there are virtually no data on how various states interpret coverage of services for CMC [14,26]. Given the paucity of data evaluating state Medicaid waivers for children with the most intensive medical needs, this study will facilitate a formal policy evaluation and analysis supporting a comparative approach to evaluate scope of services. Therefore, the purpose of this analysis was to develop a systematic and reproducible approach to evaluate the scope of coverage and services offered through 1915(c) Medicaid waivers for children.

This project was funded in 2017, and data extraction was conducted 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. Overall, 142 eligible waivers across 45 states were included in the final analysis, which is still ongoing. Five states chose other funding mechanisms and did not use the 1915(c) waivers for children. By following the process outlined for data extraction, there were no missing data for any of the waiver elements included in this analysis. Study analysis was completed in January 2019, and after analyzing each individual waiver, the results were aggregated at the level of the state and for each diagnostic subgroup. The published results are forthcoming.

While defining the HCBS scope of services for children, we established that existing criteria for HCBS taxonomy developed by Peebles and Bohl (developed for all HCBS, not specific to pediatrics) [32] should be reconsidered for waivers targeted toward children and families. Some HCBS services do not have the same level of applicability for children (eg, adult day services) and could be eliminated for waivers targeting children, while other categories could be further expanded more fully to explicate services that are most pertinent (ie, expanding education into a category and expanding caregiver support so that respite can be a category). All recommendations for child- and family-centric HCBS taxonomy are found in Table 1; these involve recommendations for modifying the existing adult HCBS taxonomy specifically for pediatric and family-centered services.

We present a novel analytic methodology to systematically evaluate 1915(c) Medicaid waivers targeting CMC that can be replicated and updated as new waivers are approved. Even though there was uniformity in the Medicaid applications, there was high heterogeneity in how waiver eligibility, transition plans, and wait lists were defined. To accommodate this heterogeneity, normalization criteria for cross-waiver comparison were developed based on the ability to conduct analysis without threats of missing data, which required these important elements to be excluded in the overall coverage score. Greater data harmonization across states can allow expansion of the overall coverage score over time if these elements can be captured in systematic and reproducible ways. Additionally, another major methodological finding was the inability to capture CMC alone by focusing on the “disabled” target groups. This unanticipated challenge resulted in a broadened approach by including all waivers targeting children. The overall result of this decision will lead to a much more robust data set and likely to greater policy implications and translation.

The 1915(c) Medicaid waivers are not the only mechanism available to fund home and community-based services for CMC, but they are, by far, the most widely used [14,33]. Even if states use a combination of 1915(c) and 1115 demonstration waivers (experimental or pilot programs that promote the objectives of Medicaid), moving to Medicaid managed care or other funding pathways, the overall coverage score can still be used as part of a composite score representing access to HCBS [18,20,34]. Although the overall coverage score represents an important first step in understanding access and differences in state interpretations, several research gaps exist. Using the socioecological model outlined in Figure 1, we believe there is a need for better links between public policy, infrastructure, health care providers, and a family-centered approach to extend this research by assessing quality outcomes related to HCBS; understanding of family-centered needs regarding timing, frequency, service extensions, preferences with respect to medical homes [35,36], and transition; and formal economic and policy evaluations of components of waiver services to understand their efficacy as well as studies related to the impact of such waivers on family functioning and economic sustainability (ie, return on investment).