RISP State Profiles FY 2020

Intellectual or Developmental Disabilities (IDD); LTSS: Long-Term Supports and Services; ICF/IID: Intermediate Care Facilities for Individuals with Intellectual Disabilities; Group: Number of people with IDD in a setting (ICF/IID, group home or other); Waiver+: Medicaid Authorities 1115, 1915 (a)(b)or (b/c), 1915(c)

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FY 2020 Profile

Profiles show longitudinal changes in residential settings for LTSS recipients with IDD, state IDD agency caseloads, Medicaid Waiver waiting lists and Medicaid recipients by funding authority. They also show FY 2020 expenditures per person by funding authority, setting type, and age. Blank spaces or breaks in a trend line indicate years in which a data element was not collected or for which a state provided incomplete or no data. Large year-to-year changes often reflect changes in state data sources or methodology, the addition or termination of a funding authority, or inclusion of a narrower or broader set of recipients. The State Notes describe variations from the survey definitions, alternative data sources used, reasons for large year-to-year changes, and other factors affecting data interpretation. Additional national and state data can be viewed in the RISP project’s Chart Gallery at https://risp.umn.edu/viz. Survey questions and operational definitions can be found in the Publications section of the RISP website.

IDD Agency Long Term Supports and Services Recipients by Residence Type

The first chart shows the number of long-term supports and services (LTSS) recipients by residence type (family home, own home, host or foster family home, and group homes) by year. Group settings such as ICFs/IID or Medicaid Waiver-funded group homes are broken down according to the number of people with IDD sharing the home (1 to 3, 4 to 6, 7 to 15 or 16 or more).

Caseload, LTSS and Medicaid Recipients and Waiting for Waivers

The second chart shows changes over time in the number of people served by state IDD agencies, the number of people with IDD receiving one or more LTSS in addition to case management, and the number of people with IDD waiting for Medicaid Waiver funded services while living with a family member or in their own home. The waiting list numbers do not include people who already live in a group home or another LTSS setting or who already receive some Medicaid Waiver funded supports. The chart also shows changes in the number of LTSS recipients whose services are funded under the Medicaid ICF/IID program, or under one of several Medicaid Waiver funding authorities (1115, 1915 (a)(b)or (b/c), 1915(c)).

Average Annual Medicaid Per Person Expenditures for FY 2020

The third chart shows average annual per person expenditures for people with IDD living in an ICF/IID, or who receive LTSS funded by specific Medicaid Waiver funding authorities (1115, 1915 (a)(b)or (b/c), 1915(c)). When available, for Medicaid Waiver recipients, annual per person expenditures are also broken down by recipient age as of June 30 (birth to 21 years or 22 years or older) and by living arrangement (family home or any other setting).

State Notes for New Jersey

The New Jersey IDD agency only serves adults. In FY 2020, three people with IDD housed in a separate building of a state operated ICF/IDD had been convicted of crimes and court-ordered to a disability rehabilitation setting. The number of own home settings are not known and is estimated to be one setting per recipient. Since FY 2013, ICF/IID expenditures and recipients by age have been reported only for state operated ICF/IID settings. Significantly more people in family homes received waiver services in FY 2020 due to ramp up of the “Supports Program” Waiver, which was implemented in FY 2017. Alternate data for Waiver and ICF/IID expenditures are from Mathematica (Murray et al, 2023). Alternate data for ICF/IID and nursing home residents are from AHCA (2020a, 2020b, & 2020c). Some of the people reported to have died while in a state-run IDD facility had recovered from Covid-19 and subsequently died.