Posted on March 17, 2025

By Lindsey Moore, CQL Project Coordinator

Historically, the Centers for Medicare and Medicaid Services (CMS) focused on size and/or geographic location of where Medicaid-funded support services were provided. Now, CMS is focusing on people’s individual experiences and community integration through the Home and Community-Based Services (HCBS) Settings Rule. 

The intent of the HCBS Settings Rule is to ensure people receiving services have full access to the benefits of community living. This includes ensuring people have the opportunity to receive services in the most integrated locations possible. The HCBS Settings Rule provides protections to people, including but not limited to protecting rights afforded to all people. Ultimately, when complying with the HCBS Settings Rule, organizations can enhance the quality of their services through integration, choice, protecting and promoting individual rights, as well as dignity and respect. 

For some people receiving services and their families, service changes due to the HCBS Settings Rule may have seemed to come as a surprise. However, the HCBS Settings Rule was established by CMS in 2014 after extensive public input over more than 5 years with multiple rounds of proposed rulemaking and thousands of public comments. After numerous deadline extensions, provider organizations were ultimately required to be in full compliance by March 17, 2023.

Many provider organizations and families continue to face challenges after the deadline, due to changes required by the HCBS Settings Rule. In this article, we share how organizations can support families in better understanding the rule and embracing its values. Then, we pose three questions to Christine Campbell, Co-Executive Director at Mayor’s Youth Empowerment Program (MYEP) about tackling challenges when supporting families to navigate these service changes.

Guiding Families Through Service Changes Due to the HCBS Settings Rule

Communicate

Empathy, the ability to understand and share in someone else’s feelings and experiences, serves as a foundational step in building trust and rapport with families. This can be achieved through encouraging open communication and collaboration. Only with trust and rapport are communication strategies truly effective. 

Strategies to Enhance Communication:

1. Evaluate and enhance different communication methods, including tools, approaches, technology, etc.
2. Proactively and regularly inform families about regulation changes and service changes and enhancements due to the HCBS Settings Rule.
3. Consider expanding the number of touchpoints families have with information the organization wants them to know.
4. Develop a newsletter, highlight success stories, spotlight leadership initiatives and advocacy, facilitate town halls, and/or virtual meetings. 
5. Collect ongoing satisfaction information from people, their families, and employees regularly. Explore ways to gather this information like surveys, focus groups, interviews, etc. Then, you should identify ways to use that data to drive decision-making, and communicate those results and insights with stakeholders, like families. 

Educate

While strong communication strategies are foundational, allocating time and resources to go beyond surface-level engagement and provide in-depth education about information is crucial. When people and their families are knowledgeable, they are supported to be effective collaborators. 

Strategies to Provide Meaningful Education to Families:

1. In providing education to families, it’s essential that everyone has the same foundational values. The Rule is rooted in concepts of dignity, respect, equality, and fair treatment of people receiving services. Those concepts hinge on presuming competence. To assist in educating families about the values of the Rule, you could start by showing the Presuming Competence video.
2. Provide clear explanations, which may involve developing additional resources in plain and various languages. Personal Outcome Measures® In Pictures: For Adults is an example of a plain language tool.
3. Consider a variety of formats for education including but not limited to workshops, short and long video content, guides, etc. 
4. Include resources for families that are visually appealing and ‘digestible,’ that contain engaging and interesting content. An example of this approach is CQL’s 8 Ways to Support People To Vote Infographic.
5. When educating families, be sure to highlight the measurable impact on their loved ones. This helps drive home ‘the why’ of the Rule. You can demonstrate this through research like CQL’s article, The HCBS Settings Rule Can Improve Health and Safety of People with IDD.

Empower

Through this process of communicating with and educating families, provider organizations ensure families are empowered to advocate with and for their loved ones in meaningful ways. Supporting families to enhance their support networks by connecting with others, provides additional resources and fosters community inclusion. 

Organizations can explore these additional strategies to empower families:

1. Facilitate support groups and workshops to connect families to people with shared experiences. 
2. Identify willing and knowledgeable family members to serve as “mentors” to families new to services. 
3. Provide dedicated positions to assist families to understand and access other community resources.

Provider Insights into the HCBS Settings Rule & Families

Along with sharing the guidance above, we also talked with Christine Campbell, Co-Executive Director at Mayor’s Youth Empowerment Program (MYEP) in Iowa City, Iowa. Christine describes how MYEP helped support families in better understanding and embracing the HCBS Settings Rule.

What is a strategy your organization uses to ensure people are choosing when and how they spend their time, to align with the HCBS Settings Rule?

One effective strategy we have used is individualized event calendars based on people’s interests and preferences. These calendars help people to make informed decisions about how they wish to spend their time and provide a visual they can refer to. When creating the schedule, there are pre-planned events to choose from, but if none are of interest to the person, they elect to schedule other events instead – or to schedule no events if they prefer. While not everyone chooses to use these calendars, for those who do, the calendars help the person engage in activities that are meaningful to them. 

What is one of the most common challenges your organization faces in supporting families navigating service changes? How did your organization address these challenges? 

One of the most common challenges is addressing misconceptions about people with disabilities and their ability to control their own lives. Many families believe that their loved ones need constant protection from others to keep them safe and may underestimate their capacity for making decisions. This perception can lead to overprotectiveness, which inadvertently limits the person’s autonomy and personal growth.

We have found if we foster a culture of trust and support, through a team-based person-centered planning process, we can help families understand that empowering their loved ones to take control of their own lives is not only possible but also beneficial for their overall well-being. A collaborative approach ensures everyone’s concerns are addressed while prioritizing the person’s preferences and goals.

What is one of the greatest lessons your organization learned as you worked to come into compliance with the HCBS Settings Rule?

We discovered that our organization had to make only minimal adjustments to comply with the HCBS Settings Rule. One of the most significant lessons we learned was that people tend to resist changes, especially when mandated by an official entity, even if those changes do not drastically alter daily routines or services. We found it helpful in alleviating fears about change to explain how the principles outlined in the Rule were already in practice.

Supporting Families Going Forward

As you’ve read, the HCBS Settings Rule can have a significant impact on the lives of people with disabilities who are receiving services, through regulations that promote choice, enhance independence, strengthen self-determination, build community, advance integration, and affect other quality of life areas.

Despite the significant shifts through the Rule, the challenges people, families, and providers may face due to service changes are surmountable with proactive and collaborative strategies. Hopefully, the tools, techniques, and practices detailed in this Capstone provide you with guidance in better understanding and embracing the HCBS Settings Rule.

To assist you in your efforts, here are additional resources about the HCBS Settings Rule, that could be beneficial for families:

• HCBS Video – HCBS Overview
• HCBS Video – Provider Requirements for Residential Settings
• HCBS Video – What Does The Rule Guarantee?
• HCBS Video – Rights Restrictions & Modifications
• CQL Webinar – Beyond Compliance: Embracing The Values of the HCBS Settings Rule
• CQL Capstone – The HCBS Settings Rule: Insights & Next Steps After The Deadline
• ASAN Toolkit – HCBS Settings Rule Resources
• HCBS Guide – Supporting The Right To A Community Life
• HCBS Guide – Your Right To A Community Life
• AUCD FAQ – The HCBS Settings Rule: What You Should Know!
• AUCD FAQ – The HCBS Settings Rule: How to Advocate for Truly Integrated Community Settings
• ACL Resources – The HCBS Settings Rule