Background: Long-term care services are funded primarily by Medicaid long-term services and support in the United States, where eligibility is based on care needs of the individual with intellectual and developmental disability alone. Impact of Medicaid waiver services on self-reported caregiver needs is not well understood. Method: Caregivers (n…

Background: Home and Community-Based Service Medicaid waivers may reduce unmet healthcare needs for individuals with Intellectual and Developmental Disabilities (IDD). However, whether certain groups of individuals are relatively disadvantaged in accessing Medicaid waivers is unclear. Objectives: This cross-sectional study aimed to identify…

Given the critical shortage of community providers and a growing aging population of individuals with intellectual and developmental disabilities, siblings are expected to provide caregiving for their brothers and sisters with intellectual and developmental disabilities. However, family support and disability policies often do not acknowledge…

Direct support professionals (DSPs) provide a range of supports in a variety of settings to people with intellectual and developmental disabilities (IDD) who count on these supports to live, work, and contribute in their communities. Despite this, high annual DSP turnover rates are problematic. DSP turnover is disruptive to people who receive…

Inpatient hospitalizations for ambulatory care sensitive conditions (ACSC) among beneficiaries with and without intellectual and developmental disabilities (IDD) were examined using Medicaid and commercial claims from 2010-2014 in New Hampshire. IDD was defined with "International Classification of Diseases, Ninth Edition, Clinical…

Although Medicaid managed care is a growing service model, there is a limited evidence base regarding quality and value-based payment standards for people with intellectual and developmental disabilities (IDD). This study examined the relationship between emergency room utilization and quality of life outcomes. We analyzed secondary Personal…

Emerging research tests the impact of United States Medicaid home and community-based (HCBS) waiver policy on outcomes for people with intellectual and developmental disabilities; however, this body of work has yet to be synthesized. We conducted a scoping review to establish what is known about the impact of Medicaid HCBS policy on the lives of…

This study explored the experiences of families in navigating the Ghanaian health system to address the general health needs of their children with intellectual and developmental disabilities (IDD). The sample involved 22 primary caregivers of children with IDD aged 3-18 years who participated in a semi-structured interview. The interviews were…

There is a dearth of existing research on the treatment of reproductive cancers among women with intellectual and developmental disabilities (IDD). This study analyzed the 2010 Healthcare Cost and Utilization Project Nationwide Inpatient Sample and compared the prevalence of reproductive cancer treatment hospitalization discharges among women with…

People with intellectual and developmental disabilities (IDD) often rely on Medicaid-funded services and supports to facilitate their daily living. The financial investment for these services is significant, yet little work has been conducted to understand how these investments affect life outcomes. This pilot study used a novel data integration…

Medicaid Home and Community Based Services (HCBS) waiver programs provide the majority of long-term services and supports for people with intellectual and developmental disabilities (IDD). Relatively new (2014) HCBS rules (CMS 2249-F/2296-F) governing these programs require "meaningful community" integration of people with disabilities…

States have increasingly transitioned Medicaid enrollees with disabilities from fee-for-service (FFS) to Medicaid Managed Care (MMC), intending to reduce state Medicaid spending and to provide better access to health services. Yet, previous studies on the impact of MMC are limited and findings are inconsistent. We analyzed the impact of MMC on…

People with intellectual and developmental disabilities (IDD) are frequent users of health services. We examined how their service utilization of emergency department (ED), inpatient hospitalization, and primary care physicians changed as they transitioned from fee-for-service to Medicaid managed care (MMC). Our results showed that MMC reduced the…

Participant direction allows people with intellectual and developmental disabilities (IDD) and/or their families to direct services; in doing so, participant direction shifts participants from passive recipients to active consumers. Medicaid encourages, but does not require, states to allow participant direction. The aim of this study was to…

Many adults with intellectual and/or developmental disabilities (IDD) can access health and long-term services and supports (LTSS) through Medicaid. States are reforming their Medicaid LTSS programs from a fee-for-service model to a Medicaid managed LTSS (MLTSS) approach, anticipating improved quality of care and reduced costs, although there is…