Variability In States’ Coverage Of Children With Medical Complexity Through Home And Community-Based Services Waivers

Keim-Malpass J, Constantoulakis L, Letzkus L
Source: Health Affairs
Publication Year: 2019
Population Focus: Complex care
Demographic Group: Child
Intervention Type: Best practices, Service redesign
Study Design: Other Study Design
Type of Literature: White

Even though children with medical complexity represent less than 1 % of the US pediatric population, they are among the costliest users of the healthcare system. Much of the care for these children is delivered in home and community-based settings and covered by Medicaid waivers under Section 1915(c). Expenditures related to these waivers have been steadily increasing, with most recent estimates showing spending that exceeds $48 billion per year. Little is known about these waivers’ economic impact or effectiveness, because their components and coverage have not previously been well defined. Our study addressed this paucity of data by analyzing the scope of coverage offered by the waivers and evaluating how states are using them to cover children with medical complexity. We found great variability in how states choose to interpret scope of coverage and services offered, and this variability may have an impact on child and family outcomes.

Insights Results

Overview of article

  • This study assesses the scope of coverage, specifically for home and community-based services, offered by Section 1915 waivers, which allow states to waive certain income eligibility criteria and have the flexibility to define high-risk populations based on age, medical condition(s) and disability status, as well as evaluate how states are covering medically complex children through the waivers

Methods of article

  • Using data collected from approved Medicaid applications, the authors conducted a cross-sectional comparative analysis of all Section 1915(c) waivers that targeted children
  • To determine coverage/scoring for each waiver and extract data, researchers included the following elements in the data extraction process: 1) Range of pediatric ages covered; 2) Possibility of pediatric transition to young adult services; 3) Use of cost containment strategies that involve capitation and individual cost limits; 4) Scope of home and community-based service types offered; 5) Time a person can remain on the waiver; and 6) Dollars allocated per person. These domains were picked based on theory-based clinical relevance and elements central to the administration and policy relevance of the waivers
  • 11 domains of home and community-based services were included: 1) Case management or care coordination; 2) Education services offered to the family or school about the care of the child; 3)Environmental, home, or vehicle modification; 4) Specialized equipment or supplies; 5) Counseling or psychological or behavioral support for the child; 6) Caregiver, parent, or family counseling; 7) Support; or bereavement services; 8) Personal care or day habilitation (community-based programs for people with developmental disabilities to be independent with assistance for daily activities); 9) Respite care; 10) Therapy (physical, occupational, speech, vision, auditory, or music therapy); 11) Skilled or private duty nursing; and treatment (pharmaceutical, dietary, or dental services)


  • The analysis included 142 waivers across 45 states. Only one state (New York) had a waiver for each of the 4 defined target groups. The most common group was people with intellectual or developmental disability (60.6 %), followed by disabled, subgroup (24.6 %); disabled, general (9.9 %); and mental illness (4.9 %). Both children and adults were eligible for ninety-one waivers
  • Of the 142 waivers, the most common group was people with intellectual or developmental disability, followed by disabled (subgroup), disabled (general), and mental illness
  • The average waiver covered roughly half of the 11 categories of home and community-based services. The most provided services was respite care with the least provided service being education services offered to the family or school about the care of the child
  • Cost containment strategies were common with most having individual cost limit criteria (e.g., enrollment limits, imposition of additional monetary limits)

Key takeaways/implications

  • There are potential unintended consequences for waivers that cover both children and adults. For example, there are differences in developmental needs between children and adults, of which many pediatric-specific developmental milestones can be addressed through home and community-based services. As such, states should consider children as not just small adults but as a population with very specific developmental, physical, and psychosocial needs that can be addressed through a tailored and family-centered approach to care in home and community settings
  • The study recommends more links between public policy, infrastructure, healthcare providers, and a family-centered approach to extend this research by assessing outcomes related to home and community-based services, understanding family-centered needs and preferences regarding services offered and their timing and frequency, and formal economic and policy evaluations of the components of waiver services to understand their effectiveness, impact on family functioning and economic sustainability
  • Moving forward, researchers would like to incorporate the denominator of those in need within each state to estimate the number of children who are at risk. Additionally, formal economic evaluations are needed to understand the impact and effectiveness of waiver coverage and characteristics on health and family-centered outcomes at both individual and state levels
  • Limitations to the study include a sole focus on the coverage of home and community-based services for children through Section 1915(c) waivers and non-inclusion of adults from waivers that included both children and adults