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NCI Data Brief: Significant Disparities in Outcomes and Quality of Life for Those Needing Support for Self-Injurious Behavior


Self-injurious behavior can have serious negative effects on health, quality of life, and inclusion for people with intellectual and developmental disabilities. NCI staff looked at the data from the National Core Indicators Adult Consumer Survey 2015-2016 and found significant disparities in outcomes and quality of life for the 3,617 people in the sample who were identified as needing support to manage self-injurious behavior (SIB), compared to those who were identified as not needing such support. The latest NCI data brief details their findings and describes ways states can use the results to improve service delivery.

In terms of prevalence, the proportion of people with SIB support needs ranged widely across states—from 12% to 45%—a possible indicator of differences in eligibility criteria for public supports or in definitions of SIB.

In terms of characteristics and outcomes, those with SIB support needs were significantly more likely to have been diagnosed with a mood or anxiety disorder. And though 67% were identified as having behavior challenges, 44% of people with SIB support needs did not have a behavior plan in place. They were also significantly more likely to live in a group setting and were less likely to report that they like where they live, that they have friends beyond family and staff, and that they had input into major life decisions. They were also significantly more likely to prefer to communicate via gestures/body language or sign language or finger spelling.

Graph showing smaller proportions of respondents with SIB support needs have input into major life decisions.

Among other policy recommendations, NCI staff point to the importance of functional assessments and analysis in improving outcomes for people with SIB support needs; these assessments can help identify the underlying causes and the consequences of the behavior and determine ways to replace it with a functionally related appropriate alternative. They also note the importance of employing evidence-based and person-centered practices, such as Positive Behavior Supports (PBS), to ameliorate the intensity or presence of SIB, and suggest that states that allow aversive interventions may want to re-examine their policies on these interventions to determine whether they’re aligned with desired quality of life outcomes.

Read the full data brief here.

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