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HCBS Settings Rule: Approaching The Original Deadline

By Mary Kay Rizzolo, CQL President and CEO

Update on July 7, 2020: In July 2020, the deadline was extended again to March 17, 2023.

In January 2014, The Centers for Medicare & Medicaid Services (CMS) released a new rule that would impact Home and Community Based Services (HCBS) Settings, with direct and significant implications for people receiving supports, human service providers, families, state agencies, and other stakeholders. This rule provides guidance and requirements for human service providers that people receiving supports have full access to the benefits of community living, be integrated in their communities, exercise rights, make choices, select the services they use, and direct who provides those services.

This rule went into effect on March 17, 2014 and was initially established with a 5-year transition period – with an original deadline of March 17, 2019 – for entities to carry out the requirements of the rule and for states to demonstrate compliance with its associated regulations. In May 2017, a three year extension was issued by CMS beyond that initial 5-year period, so that the new compliance deadline is March 17, 2022. In making this decision for an extension, CMS indicated that it was due to the “difficult and complex nature of this task (achieving compliance)”.

The new deadline is now just 3 years away, yet there still remains uncertainty about what the HCBS Settings Rule is, why it’s important, and how it impacts people’s lives. To help stakeholders navigate these complex issues, we’re put together the following article to call attention to lapses in knowledge about the rule, while sharing tools and resources to bridge these gaps.

Wide Disparities In HCBS Settings Rule Knowledge

By Carli Friedman, CQL Director of Research

As Mary Kay referenced the rule is technical and lengthy, and therefore inaccessible to a lot of key stakeholders, such as people with disabilities, families, and support staff. We recently conducted a study to explore settings rule knowledge disparities of stakeholders, including 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 (n = 70)

PWD = People with disabilities

Resources To Reduce Those Disparities

By Katherine Dunbar, CQL Vice President of Services and Systems Excellence

Over the last few years, CQL has been partnering with the Illinois Council on Developmental Disabilities and other advocacy groups to help educate people about the rule by providing numerous resources, guides, videos, trainings, and more. This collaboration has resulted in the HCBS – Advocates Creating Transformation (HCBS-ACT) Project.

HCBS Informational Videos

Free HCBS Resources

HCBS guide for support providers

Supporting The Right To A Community Life

This free resource prepares you to assist those you support to advocate for the community lives they want and share their experiences.

HCBS guide for people receiving services

Your Right To A Community Life

This free resource prepares you to assist those you support to advocate for the community lives they want and share their experiences.

CQL’s Toolkit For States

This HCBS Settings Rule: Toolkit for States provides detailed information, across populations, of quality measurement to comply with reporting requirements to CMS about the HCBS Settings Rule and associated quality assurances. It crosswalks CQL quality measurement tools and data elements, to demonstrate compliance.

Need Additional Support?

For self-advocacy groups, provider organizations, state agencies, and other stakeholders who desire customized consultation surrounding the HCBS Settings Rule, CQL does offer in-person training to improve understanding of the regulations and resulting compliance issue. You can Contact CQL to discuss this further, and find out how we can provide tailored training to your unique needs.