In Order To Know Where You’re Going, You Need To Know Where You’ve Been

The Administration on Community Living funds three Projects of National Significance that collect longitudinal data about supports and services for people with intellectual or developmental disabilities (I/DD). One such project, the Residential Information Systems Project (RISP), has been tracking changes about where people with I/DD live and receive long-term supports and services (LTSS) since 1982. 

Table 1 shows the change in both the number of people with I/DD receiving LTSS and the growth of  community-based living arrangements over the past four decades. One of the biggest drivers of this change is the Medicaid Home and Community-based Waiver program. Home and Community-Based Services (HCBS) waivers provide an alternative to institutional care, which once was the only publicly funded LTSS available. HCBS waiver programs have shifted long-term supports and services from an institutional model to a community-based system. Both the total number and proportion of people receiving supports funded by a Medicaid waiver has increased. LTSS recipients with I/DD served under the umbrella of state disability agencies grew 81% between 1997 and 2016.

In FY 2016, 66% of Medicaid-funded LTSS recipients with I/DD received these supports through Medicaid waivers. As the number of people receiving community-based supports has increased, the size of non-family residential settings has decreased. The proportion of people living in settings of six or fewer has increased while the proportion of people in settings of 7 to 15 or in settings of 16 or more has declined.

Table 1: Number of LTSS Recipients with I/DD in Non-Family Settings and Percent by Setting Size

This figure excludes people living in family homes, nursing homes, and psychiatric settings. It includes people with I/DD living in ICF/IID, group homes, host homes and family foster homes, own home, and “other” I/DD settings.

Over the decades, the growth in individualized settings has grown even more. Individualized settings include people living in their family home, their own home, with a host family, or in a residential setting of three or fewer people. Nearly all of the growth in the number of people receiving LTSS was among people living in individualized settings, particularly in the number of people receiving LTSS in their family home (Table 2). The number of LTSS recipients living in individualized settings grew by 122%, from 451,598 people to 1,002,923 people. The proportion living in individualized settings grew from 65% to 80%.

Table 2: Living Arrangements for Medicaid ICF/IID and Waiver Recipients (% of Recipients) 2010, 2012, 2014, 2016

Several recent Medicaid changes may have an even greater effect on where people live in coming years. The 2014 Medicaid Home and Community-Based Services (HCBS) Settings Rule included restrictions on the characteristics, such as size, of settings eligible for HCBS funding. These rules require more individualized supports and give people with disabilities greater control over where they live. The final implementation date for the HCBS Settings Rule was extended to 2022. In addition to these changes, there has been an increasing number of HCBS waiver options available to states to provide LTSS that support community living. The national impact of these changes will not be known for several years. The data collected by RISP and the other Projects of National Significance will be important tools for monitoring state progress and the effects of on-going changes in the LTSS system for people with I/DD. For more information about trends in your state, visit risp.umn.edu.

Lynda L. Anderson is a researcher at the Institute on Community Integration Research and Training Center on Community Living, University of Minnesota.