State Design and Use of Medicaid 1915(c) Waivers and Related Benefits to Provide Home‐ and Community‐Based Services to Aging and Disabled Adults: The Medicaid HCBS Waiver Atlas
4 affiliations
- 1Department of Health Policy and Management, Bloomberg School of Public Health Johns Hopkins University Baltimore Maryland USA
- 2VA Boston Health Care System Boston Massachusetts USA
- 3Department of Applied Mathematics and Statistics, Whiting School of Engineering Johns Hopkins University Baltimore Maryland USA
- 4Schaeffer Institute for Public Policy and Government Service, Sol Price School of Public Policy University of Southern California Los Angeles California USA
Abstract
Objective: Home‐ and community‐based services (HCBS) enable adults living with disabilities to age in the community. In the United States, the primary payer of HCBS is Medicaid, which is primarily funded through 1915(c) waivers, but states increasingly rely on 1115 programs. Consequently, Medicaid HCBS programs vary significantly by state, yet little is known about how Medicaid HCBS program structures and generosity differ, which impedes rigorous evaluation of the effectiveness of different HCBS programs. We introduce a dataset systematically capturing the Medicaid HCBS program features within and across states in the United States.
Study Setting and Design: We developed and validated an automated, systematic methodology to extract Medicaid HCBS program characteristics (2010–2024) using HTML parsing, plain‐text extraction, vision‐based optical character recognition, and large‐language models. We adapted the policy epidemiological framework to incorporate aspects of the Curated Data Enterprise Framework to guide our dataset creation through inclusion of stakeholder engagement to identify key policy elements critical for evaluations that may be of interest to policymakers and researchers, and rigorous data validation and quality control checks.
Data Sources/Sample: 1115 demonstration (n = 145) and 1915(c) HCBS documentation of waivers serving adults 18+ with functional/cognitive disabilities (n = 1277).
Principal Findings: We successfully extracted data from 93% and 100% of 1915(c) and 1115 documents, respectively, to develop a dataset with metadata and documentation. From 1915(c) waivers, we extracted and described the prevalence of all available elements such as eligibility criteria, cost limits, target populations, service characteristics (e.g., type available, limitations of use/cost), self‐direction, and so forth. From 1115 waivers, we extracted eligibility criteria, coverage of specific HCBS services (e.g., personal care), and managed care.
Conclusions: The research community can use this novel dataset to exploit variation across states and conduct comparative effectiveness of Medicaid HCBS programs. Beyond older adults with disabilities, our methodological approach can be expanded to study Medicaid program characteristics across services.
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BibTeX
@article{miller2026state,
title = {{State Design and Use of Medicaid 1915(c) Waivers and Related Benefits to Provide Home‐ and Community‐Based Services to Aging and Disabled Adults: The Medicaid HCBS Waiver Atlas}},
author = {Katherine E. M. Miller and Thomas Kidu and Vignesh Rajesh Babu and Ashitha P. Gowda and Valecia Hanna and Chloe Kim and Johanna Thunell},
journal = {Health Services Research},
year = {2026},
month = oct,
doi = {10.1111/1475-6773.70176},
url = {https://doi.org/10.1111/1475-6773.70176},
note = {CC BY-NC 4.0},
}
RIS
TY - JOUR
TI - State Design and Use of Medicaid 1915(c) Waivers and Related Benefits to Provide Home‐ and Community‐Based Services to Aging and Disabled Adults: The Medicaid HCBS Waiver Atlas
AU - Katherine E. M. Miller
AU - Thomas Kidu
AU - Vignesh Rajesh Babu
AU - Ashitha P. Gowda
AU - Valecia Hanna
AU - Chloe Kim
AU - Johanna Thunell
PY - 2026
DA - 2026/10/25
JO - Health Services Research
DO - 10.1111/1475-6773.70176
UR - https://doi.org/10.1111/1475-6773.70176
AB - Objective: Home‐ and community‐based services (HCBS) enable adults living with disabilities to age in the community. In the United States, the primary payer of HCBS is Medicaid, which is primarily funded through 1915(c) waivers, but states increasingly rely on 1115 programs. Consequently, Medicaid HCBS programs vary significantly by state, yet little is known about how Medicaid HCBS program structures and generosity differ, which impedes rigorous evaluation of the effectiveness of different HCBS programs. We introduce a dataset systematically capturing the Medicaid HCBS program features within and across states in the United States. Study Setting and Design: We developed and validated an automated, systematic methodology to extract Medicaid HCBS program characteristics (2010–2024) using HTML parsing, plain‐text extraction, vision‐based optical character recognition, and large‐language models. We adapted the policy epidemiological framework to incorporate aspects of the Curated Data Enterprise Framework to guide our dataset creation through inclusion of stakeholder engagement to identify key policy elements critical for evaluations that may be of interest to policymakers and researchers, and rigorous data validation and quality control checks. Data Sources/Sample: 1115 demonstration (n = 145) and 1915(c) HCBS documentation of waivers serving adults 18+ with functional/cognitive disabilities (n = 1277). Principal Findings: We successfully extracted data from 93% and 100% of 1915(c) and 1115 documents, respectively, to develop a dataset with metadata and documentation. From 1915(c) waivers, we extracted and described the prevalence of all available elements such as eligibility criteria, cost limits, target populations, service characteristics (e.g., type available, limitations of use/cost), self‐direction, and so forth. From 1115 waivers, we extracted eligibility criteria, coverage of specific HCBS services (e.g., personal care), and managed care. Conclusions: The research community can use this novel dataset to exploit variation across states and conduct comparative effectiveness of Medicaid HCBS programs. Beyond older adults with disabilities, our methodological approach can be expanded to study Medicaid program characteristics across services.
SN - 0017-9124
SN - 1475-6773
ER -