The Medicaid Waiver Dataset Initiative: The Role of Medicaid Home- and Community-Based Services in Health and Health Care for Persons Living with Alzheimer's Disease and Related Dementias

Johns Hopkins University, Baltimore MD

Investigators

Abstract

More than 6.5 million persons are living with Alzheimer’s Disease and Related Dementia (ADRD) in the United States, most of whom reside in the community. ADRD’s progressive and disabling nature necessitates increasing assistance as the disease advances. Thus, people living with ADRD rely on medical and social services provided in home- and community-based settings (HCBS) to age in place and maintain quality of life. Without a universal long-term care insurance program, most HCBS is paid for out-of-pocket or by Medicaid. Almost all states use Medicaid HCBS waivers to expand services offered and eligibility criteria under the assumption these services will help individuals avoid/delay institutionalization and remain living independently in the community. Medicaid plays a key role in funding HCBS for people with ADRD as well as developing innovative HCBS care models. Medicaid HCBS waivers characteristics vary significantly, yet these differences are not well documented. The lack of data about Medicaid HCBS waiver characteristics impedes rigorous evaluation of the effectiveness of these waivers on keeping PLWD at home, e.g. time spent at home. We have developed a methodology to construct an automated reproducible, updateable, national, longitudinal dataset with comprehensive data on Medicaid HCBS waiver characteristics from waiver application documents that will be shared publicly. Our long- term goal is to examine the comparative effectiveness of Medicaid HCBS waiver programs to improve quality of life for PLWD and to inform the creation of evidence-based, quality measures of HCBS. As a necessary step to support this goal, our objectives are to establish a validated methodology to catalog HCBS waiver characteristics and to describe users of waivers by ADRD diagnosis in a population of adults age 65+. Specifically, we will first validate a comprehensive methodology to assess Medicaid HCBS waiver characteristics. Second, we will examine the relationship between Medicaid HCBS waiver characteristics and days spent at home for people with ADRD. By linking waiver characteristics with individual-level claims, we will begin to understand what aspects of waivers impact time spent at home for people with ADRD. Consequently, this will allow for meaningful investigations into the comparative effectiveness of Medicaid HCBS waivers to promote high quality care for people with ADRD and the other 7+ million Medicaid HCBS recipients nationally. This work aligns with themes from the NIA National Research Summit on Care, Services, and Supports for Persons with Dementia and Their Caregivers and directly advances the NIA’s Strategic Directions for Research goal to “support the development of population-based datasets, especially from longitudinal studies, suitable for analysis of biological, behavioral, and social factors affecting health, well-being, and functional status through the life course.”