RISP Data Bytes

Background

Most people with intellectual or developmental disabilities (IDD) live with family members. Before 1982, people with IDD had to live in institutions to get services. Now, people with IDD can get services from group homes, their own homes, or while living with family.

Key Finding

The number of people with IDD living with family getting services increased from 325,650 in 1998 to 876,058 in 2020. Of the people getting services while living with a family member, the percentage getting state or locally funded services decreased from 75% in 1998 to 40% in 2020. The percentage getting Medicaid Waiver-funded services increased from 25% in 1998 to 60% in 2020.

Bar graph showing the number of people receiving LTSS in family homes for every other year from 1998 to 2020. Each bar also shows the proportion of those receiving waiver and non-waiver services. In 1998, 325,650 people received LTSS in family homes. 25% received waiver services and 75% received non-waiver services. The total number of LTSS recipients grew from 1998 to 2020 and so did the proportion of people receiving waiver services. In 2020, 876,058 people received LTSS in family homes. 60% received waiver services and 40% received non-waiver services. — LTSS Recipients with IDD Living with Family, Select Years 1998 to 2020

Recommendations

The number of people getting paid supports while living with a family member is increasing. Still, many people living with family do not get paid supports. Most states began paying family members to provide support during Covid-19 due to staffing shortages. States should continue to allow families to be paid to provide supports. States should also continue to increase the number of people getting paid supports while living with a family member to reduce waiting lists. Finally, states should use federal Medicaid matching funds to increase funding for services provided to people living with family members.

Data Source

Larson, S.A., Neidorf, J., Pettingell, S., & Sowers, M. (2024). Long-term supports and services for persons with intellectual or developmental disabilities: Status and trends through 2020. Minneapolis: University of Minnesota, Research and Training Center on Community Living, Institute on Community Integration.

Authors

Sheryl A. Larson, Jon Neidorf, and Brian C. Begin. The authors acknowledge the contributions by Jerry Smith, Sarah Curtner and John Smith to this product.

The RISP project is funded through a cooperative agreement from the Administration on Community Living, U.S. Department of Health and Human Services, Cooperative Agreement #90DNPA0006 with supplemental funding from the National Institutes on Disability, Independent Living and Rehabilitation Research Grant #90RTP0011.

Abbreviations used: IDD Intellectual or Developmental Disabilities; HCBS Home and Community Based Services