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

Abstract

Background 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. Objective 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. Methods 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. Results 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. Conclusions 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) RR1-10.2196/13062

Lagging coverage for mental health services among children and adolescents through home and community‐based Medicaid waivers

“…As such, many families either go without accessing these services or attempt to provide the services themselves which leads to increase financial and psychological burdens on the entire family (Thomson et al, 2016 ). Beyond the difficulty experienced by families attempting to navigate the complicated HCBS terrain, we have found that pediatric providers are also left with similar feelings of confusion and frustration (Keim‐Malpass, Constantoulakis, et al, 2019 ; Keim‐Malpass, Letzkus, et al, 2019 ).…”

“…Relevant waivers were included if: they were nonexpired from December 31, 2017, to October 31, 2018, and included children (ages 0–21) in their eligibility. As part of the larger parent study, the authors developed a systematic search and data extraction template to abstract key elements from the Medicaid applications (Keim‐Malpass, Constantoulakis, et al, 2019 ; Keim‐Malpass, Letzkus, et al, 2019 ). A systematic extraction template was used to classify the elements included in the waivers, including dollars allocated per individual, time an individual can remain on the waiver, use of cost containment strategies (capitation or individual cost limits), the possibility that a child could transition as an adult within the same waiver without a reapplication, range of pediatric ages covered, and the scope of the service type allowed on the waiver (Keim‐Malpass, Constantoulakis, et al, 2019 ; Keim‐Malpass, Letzkus, et al, 2019 ).…”

“…As part of the larger parent study, the authors developed a systematic search and data extraction template to abstract key elements from the Medicaid applications (Keim‐Malpass, Constantoulakis, et al, 2019 ; Keim‐Malpass, Letzkus, et al, 2019 ). A systematic extraction template was used to classify the elements included in the waivers, including dollars allocated per individual, time an individual can remain on the waiver, use of cost containment strategies (capitation or individual cost limits), the possibility that a child could transition as an adult within the same waiver without a reapplication, range of pediatric ages covered, and the scope of the service type allowed on the waiver (Keim‐Malpass, Constantoulakis, et al, 2019 ; Keim‐Malpass, Letzkus, et al, 2019 ). Scope of coverage could be further defined as the following: (1) case management/care coordination; (2) education services offered to family or school about the care of the child; (3) environmental/home/vehicle modifications; (4) specialized equipment/supplies; (5) counseling/psychological support/behavioral support for the child; (6) caregiver/parental/family counseling or support; (7) personal care/day habilitation; (8) respite; (9) therapies (physical therapy, occupational therapy, speech, vision, auditory); (10) skilled nursing/private duty nursing; (11) treatment (pharmaceutical, dietary, dental services) (Keim‐Malpass, Constantoulakis, et al, 2019 ).…”

“…CMC/SED have multiple transitions between hospital and home and rely on home and community‐based health services (HCBS) to keep them out of the hospital or institutional‐based settings (Breneol et al, 2017 ; Coller et al, 2017 ; Leyenaar & O'Brien, 2017 ). Numerous states cover these services through 1915(c) Medicaid HCBS waivers that allow states to waive certain income‐based eligibility criteria and the flexibility to design services based on high‐risk definitions, ages, medical conditions, and disability status (Friedman et al, 2015 ; Keim‐Malpass, Constantoulakis, et al, 2019 ; Keim‐Malpass, Letzkus, et al, 2019 ). They also get to establish the types of services included in each waiver, limits to waiver enrollees, the amount of time a child or adolescent can be on a waiver, and the total amount allocated toward each waiver type.…”

“…All 1915(c) Medicaid waiver programs must be cost‐neutral in design—in essence they must cost the government no more than if the state did not have the waiver (Keim‐Malpass, Constantoulakis, et al, 2019 ). Cost‐neutrality is usually accomplished through individual cost limits, limits in services offered, enrollment caps, and waiting lists (Keim‐Malpass, Constantoulakis, et al, 2019 ; Keim‐Malpass, Letzkus, et al, 2019 ). Many of the frameworks for service structure, reimbursement, and eligibility of HCBS are often based on adult models of care and health delivery and there is a dearth of research focused on the coverage of these services for children and adolescents with CMC and SED.…”