The National Residential Information Systems Project (RISP)-On-going Data Collection and Information Dissemination

AoD seeks to continue supporting national research on residential services for people with ID/DD. In doing so, the field will continue to have access to reliable information for informing policy and programming as it relates to the places where individuals with ID/DD are living. Tracking such information is critical to understanding the effects of policy developments and changes in services and supports. During the last five years there have been several changes that have impacted the way States fund services and supports for people with ID/DD. Examples include the COVID-19 pandemic, implementation of the Home and Community-Based Services (HCBS) Settings Rule, the expansion of Managed Long-term Services and Supports (MLTSS), and the growing interest of Managed Care Organizations in the provision of services and supports for people with ID/DD.

This project will be a source of information about the impact of these changes exploring issues such as:

• The impact of COVID-19 on the places where people with ID/DD are living pre- and post-COVID, trends in the movement of people with ID/DD during and after the pandemic, waiting list trends, and funding for residential supports under HCBS
• The growth in privately funded residential settings which may include but are not limited to, intentional communities, farmsteads, gated communities, segregated subdivisions, and disability specific apartment complexes to better understand how many people with ID/DD live in these settings; what proportion receive Medicaid Waiver or State Plan HCBS funded services; the extent to which these settings are being identified as needing heightened scrutiny by state Medicaid offices because of their institutional qualities; and to what extent would these settings would be considered institutions under the Medicaid HCBS Settings Rule of 2014.
• The progress of residential settings (by category/type) in coming into full compliance with all of the 2014 federal HCBS settings criteria, which may include residential settings (by category/type) that are in remediation; residential settings identified as presumptively institutional and/or isolating to Medicaid HCBS beneficiaries; or the transitioning of any Medicaid beneficiaries out of residential settings that a state has determined cannot come into compliance with the federal 2014 HCBS settings criteria by the end of the transition period.
• The impact of states using MLTSS to provide services and supports for people with intellectual and developmental disabilities to better understand the number of programs, types of services included, types of managed care entities used, percentage of enrollees and expenditures in capitated financial arrangements, and quality and performance measures.

With this funding, the project will:

• Provide advocates, including self-advocates, and policymakers with the information they need to improve residential services and supports for people with ID/DD; and
• Increase the knowledge people with ID/DD, family members, policymakers, and the public of the places where people with ID/DD live, including trends in the sizes of those places.

• Private institutions of higher education
• Public and State controlled institutions of higher education

Estimated Total Program Funding: