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Study Finds Wide HCBS Settings Rule Knowledge Disparities

By Carli Friedman, CQL Director of Research

The Home and Community Based Services (HCBS) settings rule aims to create opportunities for people with disabilities and older adults so they can successfully and meaningfully live in the community. The rule includes a number of requirements for states and agencies to encourage community, inclusion, and participant-direction. However, the rule is technical and lengthy, and therefore inaccessible to a lot of key stakeholders, such as people with disabilities, families, and support staff.

This study conducted by CQL | The Council on Quality and Leadership aimed to explore settings rule knowledge disparities of stakeholders — people with intellectual and developmental disabilities (IDD), their families, and providers. To do so, surveys about settings rule knowledge were completed by 70 people with IDD, family members, and providers were analyzed to determine trends and differences across groups.

Findings revealed large differences across the three stakeholder groups in terms of knowledge on thirteen different metrics (see figure). Providers in the disability industry had the highest knowledge score, getting 87% of the questions correct. Family members and people with disabilities however scored much lower – 42% and 35% respectively. In fact, it was not uncommon for people with disabilities to have never heard of the HCBS settings rule in the first place. Moreover, people with IDD in group homes were less likely to have knowledge of the settings rule than other settings, which is particularly problematic given the rules are most likely to impact them.

Settings Rule % Correct By Stakeholder Group (= 70)

As a result of these large disparities, we recommend states offer training programs about the HCBS settings rule, such as the HCBS – Advocates Creating Transformation (HCBS-ACT) Project. Outreach is necessary to ensure people with IDD have access to the rights they are entitled.

This article is a summary of the following journal manuscript: Friedman, C. (2018). Stakeholders’ home and community based services settings rule knowledge. Research and Practice for Persons with Severe Disabilities, 43(1), 54-61.