Policy Research Brief, Vol. 29, No. 3

Most People with IDD Getting Long-Term Supports Live with a Family Member

policy research brief, institute on community integration, university of minnesota

Research Issue

Most people with IDD, whether they get funded supports or not, live with family members throughout their lives. Family caregivers are vital to people with IDD in living in their homes and supporting their full participation in their communities of choice. Public policies that focus scarce long-term services and supports (LTSS) resources on non-family settings at the expense of people living with family members fail to honor the critical role families play.

Medicaid Home- and Community-Based Services (HCBS) funding provides critical supports to people with IDD who live in their own home or with family members. It provides funds to purchase personal care, skill development training, family respite, employment support services, medical and behavioral support, transportation, environmental modifications, and many other essential supports. As a program jointly funded by federal and state dollars but operated by the states, there are many differences across states in how Medicaid funded long-term supports and services are arranged. Some states serve both adults and children through state IDD agencies while others house services for children in a different state agency. States use different eligibility criteria and offer different service menus. As a result, the proportion of service recipients with IDD who live with family members varies from state to state. This Policy Research Brief describes living arrangements for people with IDD, trends in Medicaid HCBS funding for people living with families, and state variations in the proportion of people with IDD living with families.

Study Background

The Residential Information Systems Project (RISP) at the University of Minnesota has tracked living arrangements for people with intellectual or developmental disabilities who receive Medicaid- or state-funded LTSS since 1977. Among other things, the project describes variations in service delivery patterns across states, changes in service delivery across time, changes in the types and sizes of residential settings in which people live, and the number of people who are eligible but waiting for Medicaid HCBS Waiver-funded supports. This Brief is based on data from a RISP report summarizing surveys of state IDD agencies for the year ending June 30, 2018.

Policy Recommendations

Our policy recommendations include the following:

  • The direct support workforce crisis affects all parts of the LTSS systems. Worker shortages have caused many families to go without services even when they have been authorized to receive Medicaid-funded supports. Policy efforts to address the workforce challenges through wage and benefit enhancements must be offered to all direct support workers including those who support families.

  • Evaluation of the impact of the COVID-19 pandemic must consider its impact on families caring for members with IDD.

  • Successful deinstitutionalization for people with IDD has been possible in part because of increased investments in publicly-funded supports for children and adults with IDD who live with family members. Those increased investments must continue. Public policy should also focus on reducing waiting lists for people with IDD living with family members.

  • Increased funding is needed for supported competitive integrated employment and supports for meaningful day activities for people with IDD. This will help individuals with IDD to have better outcomes while also providing regular breaks from caregiving responsibilities for family caregivers.

Key Findings

61% of LTSS recipients with IDD live with a family member in 2018.

This pie chart shows that in 2018, of the people with intellectual or developmental disabilities who received publicly funded long-term supports and services, 61% lived with a family member while 12% lived in a home they owned or rented, 5% lived with a host or foster family, 10% lived in a group home shared by six or fewer people and 7% lived in a group setting shared by 7 or more people.

The number of people with IDD living with a family member who received LTSS more than doubled between 1998 and 2018.

The proportion of LTSS recipients living with a family member who received Medicaid Waiver-funded supports increased from 25% in 1998 to 61% in 2018.

This bar chart shows the number of long-term support and services recipients who lived with family members between 1998 and 2018. The number of people increased from 325,650 in 1998 to 792,030 in 2018. It also shows for those people, the proportion whose LTSS were funded by a Medicaid Home and Community Based Waiver. The proportion increased from 25% in 1998 to 61% in 2018.

The percent of LTSS recipients living with a family member varies by state. It ranged from 1% in Maryland to 88% in Arizona.

This bar chart shows by state the percent of LTSS recipients with IDD who lived with a family member in 2018. The US average (excluding people in nursing homes and psychiatric facilities) was 61%. The percent ranged from a low of 1% in Maryland and 9% in Arkansas, to a high of 88% in Arizona. Most states served between 40% and 70% of recipients in family homes.

States continue to reduce the number of people with IDD living in state-run facilities of 16 or more people. This map shows the number of people living in state-run IDD facilities of 16 or more people in each state. The number of people in those settings are shown in 5 categories: 0 people, 16 to 100 people, 101 to 500 people, 201 to 1,000 people, and 1001 to 2,969 people. Texas, Illinois, New Jersey and North Carolina had more than 1,000 people living in state-run IDD facilities serving 16 or more people in 2018.

Families supporting a child or adult with IDD report that caregiving requires them to periodically go into work late, leave early or take time off to provide care (91%), cut back their hours of work (55%), or give up work entirely (32%). Only 34% of family caregivers report being in excellent or very good health, and 94% were somewhat, very, or extremely stressed (Anderson, et al., 2018).

    Policy Forum

    This Policy Forum was held Tuesday, November 1, 2022 from 1:00 to 2:30 p.m. CT on Zoom. Watch the recording and download the presentation here.

    The Policy Forum is a bi-monthly web-based presentation and facilitated discussion exploring research published in the most recent Policy Research Brief. Please visit the website for details and to view previous forums.

    Published October 2022

    Editors: Nevil Genjang, Lynda Lahti Anderson, and Sheryl A Larson

    Graphic design: Connie Burkhart

    Research cited:

    Larson, S.A., van der Salm, B., Pettingell, S., Sowers, M., & Lahti Anderson, L., (2021). Long-term supports and services for persons with intellectual or developmental disabilities: Status and trends through 2018. Minneapolis: University of Minnesota, Research and Training Center on Community Living, Institute on Community Integration.

    Lahti Anderson, L., Hewitt, A., Pettingell, S., Lulinski, A., Taylor, M., & Reagan, J. (2018). Family and individual needs for disability supports (v.2) community report 2017. Minnesota: Research and Training Center on Community Living, Institute on Community Integration, University of Minnesota.

    Development of this PRB was supported by Cooperative Agreement #90DNPA0001-01 and Grant #90RT5019 from the Administration on Community Living to the University of Minnesota. Points of view do not necessarily represent official ACL policy.

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