Characteristics, Needs and Outcomes of People with ASD Receiving Medicaid-Funded Long-Term Supports and Services (LTSS) While Living in the Home of a Family Member

Background:

Of the 1.2 million LTSS recipients with intellectual or other developmental disabilities (IDD) served by state IDD agencies in 2014, more than half (56%) lived in the home of a family member, 11% lived in a home of their own, and 33% lived in a group setting or with a host or foster family (Larson, et al., 2016). In the 2014/2015 National Core Indicators (NCI) survey, 16% of the of 25,772 adults served by state IDD agencies in 33 states or regions who were interviewed had ASD (Human Services Research Institute, 2016). In the 2013/2014 NCI Adult Consumer Survey (ACS), 45% of the adults with ASD receiving IDD services lived in the home of a parent or relative. Of the 6,955 2013/2014 NCI family survey respondents from 18 states 11% had an adult or child family member with ASD (80% had a family member with ID and 9% had a family member with another IDD; Anderson, et al., 2016).

Objectives:

Our objective is to describe similarities and differences in characteristics, needs and outcomes for individuals with ASD and those with other IDDs who live with a family member while receiving Medicaid funded LTSS.

Methods:

This presentation describes characteristics, needs and outcomes of people with Autism Spectrum Disorders (ASD) based on secondary data analyses using the 2014/2015 NCI ACS (describing service recipients and experiences) and family surveys (describing family experiences and outcomes).

Results:

Preliminary analyses of 2014 NCI family surveys found many similarities across disability groups (ASD, ID, and other DD). Key differences included: people with ASD were less likely to receive SSI/SSDI or out-of-home respite services or to have a service plan that included all needed services, and families were less likely to report that they had say in who provided direct supports. This presentation summarizes key findings from more detailed analyses of these differences controlling for known covariates.

Previous analyses of NCI ACS results found that adults with ASD were younger, less likely to communicate using speech, and had different co-morbid conditions than other adults with IDD (Hewitt, et al., 2012). Adults with ASD were also less likely to be employed in community settings (Nord, et al., 2016).This presentation summarizes results from analysis of the most recent NCI data on differences in key outcomes for LTSS recipients living with family members who have or do not have ASD controlling for differences in known covariates.

Conclusions:

Only a few national data sources describe the characteristics and needs of people with ASD who receive LTSS. The National Health Interview Survey allows identification of children but not adults with ASD in its sample. The American Community Survey does not identify people with ASD. The NCI survey program identifies respondents with or without ASD. Data from the 2014/2015 NCI surveys were used to examine the characteristics, needs and outcomes of LTSS for people with ASD amongst people with ASD receiving LTSS through state IDD agencies.