By Carli Friedman, CQL Director of Research
A lot of progress has been made over the last few decades when it comes to expanding the community integration of people with intellectual and developmental disabilities (IDD). Yet, many people with IDD are still not meaningfully included in the community.
The Home and Community Based Services (HCBS) Settings Rule was introduced in order to improve community integration, person-centered practices, and choice for people receiving services. Although the HCBS Settings Rule was introduced in 2014, many states and providers are still working to come into compliance.
While the majority of states have final and/or initial approval of their transition plan, most (if not all) have a tremendous amount of work ahead of them to come into full compliance. For this reason, the aim of this study conducted by CQL | The Council on Quality and Leadership was to examine the potential impact of the HCBS Settings Rule on people with IDD’s health and safety, particularly emergency room visits, abuse and neglect, and injuries. To do so, we analyzed Personal Outcome Measures® outcomes related to the HCBS Settings Rule and health data from a random sample of 251 people with IDD. Based on a crosswalk between the Personal Outcome Measures® and the HCBS Settings Rule, the following indicators were selected: people use their environments; people live in integrated environments; people interact with other members of the community; people participate in the life of the community; people exercise rights; people choose where and with whom to live; people choose where to work; people choose services; people choose personal goals; people are respected; and, people are free from abuse and neglect.
Our findings revealed, the more HCBS Settings Rule related outcomes people with IDD had present, the fewer injuries, incidents of abuse and neglect, and emergency room visits they had, regardless of their clinical intellectual disability level or if they had a dual diagnosis (IDD and a psychiatric disability; see figure). For example, a person with none of the HCBS Settings Rule outcomes present is expected to visit the emergency room an average of 1.8 times per year; whereas, a person with 5 of the HCBS Settings Rule outcomes present (out of 11) is expected to visit the emergency room an average of 0.8 times per year.
The Relationship Between HCBS Settings Rule Outcomes and Health and Safety
“If implemented with fidelity, the HCBS Settings Rule has the potential to radically transform not only the IDD LTSS service system, but also people with IDD’s lives. Yet, much work needs to be done to uphold the principles set forth by the HCBS Settings Rule. Not only have most states not received final approval for their transition plans, many people with IDD remain isolated and do not receive person-centered services and supports. In fact, the people with IDD in our study lacked many of the HCBS Settings Rule related outcomes. Most of the participants in our study had few HCBS Settings Rule outcomes present, with the majority of participants scoring fewer than 5 of the possible 11 outcomes present; we believe this finding not only reflects how much the HCBS Settings Rule is needed, but also how much system transformation is truly necessary to change the HCBS Settings Rule from policy to practice” (Friedman, 2020, pp. 492-493).