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. The aim of the HCBS – Advocates Creating Transformation (HCBS-ACT) Project by the CQL | The Council on Quality and Leadership, funded by the Illinois Council on Developmental Disabilities, was to reduce these knowledge disparities by training people with disabilities, their families, and others in Illinois about the settings rule.
This study, which was conducted independently prior to my joining CQL, aimed to evaluate how well the HCBS ACT program expanded stakeholders’ knowledge and understanding of the settings rule. To do so, 86 stakeholders completed surveys which measured their knowledge about different areas of the settings rule before and after participating in the HCBS ACT training. Statistical analyses were then utilized to determine if and how participants’ knowledge of the settings rule changed.
Findings revealed the HCBS ACT program successfully increased stakeholders’ knowledge of the HCBS settings rule. Whereas prior to the training the average score was 57.3% correct, the average score after the training was 86.4% correct. Not only that, but stakeholders’ understanding of every area of the settings rule also increased significantly (see figure). For example, stakeholders were more likely to understand the rule mandates people with disabilities are allowed to have visitors at any time, can choose where to live, must have keys to their own homes, etc. Although their knowledge increased after the training, one area that stakeholders could still use more education was the difference between ICFs/DD and community-based settings as it had the lowest post-test score.
Settings Rule Knowledge Growth (n = 86)
All but a handful of states are still developing their settings rule transition plan; as a result, there are many opportunities for stakeholders to advocate for changes and submit public comments. Thus, knowledge of the settings rule is crucial for people with disabilities and their families both for empowerment, and so people with disabilities can advocate for their rights.