Posted on March 15, 2023

By Mary Kay Rizzolo, CQL President and CEO

Back in 2014, the Centers for Medicare & Medicaid Services (CMS) released the Home and Community Based Services (HCBS) Settings Rule. It created standards and requirements for human services providers and state systems involving a wide range of topics such as community living, rights, choices, privacy, self-determination, and more. This has numerous implications for the human services field, and most importantly, for the lives of people with disabilities who are receiving home and community-based services.

The deadline for compliance with the rule is now right upon us – March 17, 2023. We’re so excited about this significant milestone and the positive effect it’s having on people’s lives!

In this Capstone, we’re looking at the HCBS Settings Rule. First, we talk with Alison Barkoff, the Acting Administrator and Assistant Secretary for Aging for the Administration for Community Living (ACL). Acting Administrator Barkoff covers topics including the upcoming deadline, how various stakeholders can stay engaged, and next steps following this transition period. Then, we hear from people receiving services, who share why the values of the HCBS Settings Rule are so important. Finally, we go into more detail about those values and link to relevant tools and materials that can support you now that the deadline is passing.

Q&A with ACL Acting Administrator and Assistant Secretary for Aging Alison Barkoff

CQL: The Centers for Medicare & Medicaid Services (CMS) issued the Home and Community Based Services (HCBS) Settings Rule in 2014, initially with a five-year transition period for full implementation. The deadline for transition has been delayed several times. Why is it finally happening now?

Acting Administrator Barkoff: First, let me say that the HCBS Settings Rule is a landmark achievement in our country’s quest for full community inclusion for people with disabilities and older adults. The Rule builds off decades of work by the disability rights movement and furthers the goals of the Americans with Disabilities Act (ADA) and the Supreme Court’s Olmstead decision, holding that community living is a civil right.

It is a truly transformational moment in our journey toward statewide systems that support people with disabilities and older adults to live lives of their choosing. The Rule is, at its core, about basic human rights – the ability to choose when you go to sleep, what you eat, who you live with, having visitors of your choice, being able to lock your door, and choose what activities you want to do – rights that most people take for granted. It’s about making sure that everyone can fully participate in their community with all the rights, dignity, respect and freedoms from coercion and restraint that every member of a community deserves.

System transformation takes work and time, which is why there initially was a five-year transition period. Over the last several years, a variety of issues – chief among them the COVID-19 pandemic – caused delays. The additional time for full implementation, however, did not mean that work on the Settings Rule came to a halt. Over the last eight years, states, providers, advocates, people with disabilities, older adults, and families have been working on implementation, and we’ve seen significant progress across the country in expanding community living options and improving the quality of services for people receiving HCBS.

The March 17 implementation deadline represents the culmination of tremendous efforts across a broad coalition of agencies, organizations, and individuals. Nationwide, we have seen practical, enforceable real-world changes that will result in greater collaboration among providers, states, and the federal government around a shared person-centered vision. We have all been fighting for the right to real community living for decades, and full implementation of the Rule moves us closer towards that goal. And at the same time, there is more work to be done for the promises of the Rule to be fully in place for every single person receiving HCBS across the country.

CQL: What comes next now that the transition period for implementation is ending?

Acting Administrator Barkoff: As of March 17, all states must be fully compliant with the Rule’s basic civil rights requirements (described above) and may, through time-limited corrective actions plans (CAPs), have additional time to fully comply with a limited number of requirements in the Rule that have been impacted by the COVID-19 public health emergency in their states. This balances the reality on the ground that implementation has been impacted by the pandemic with the recognition that people receiving HCBS have waited too long for the basic civil rights that others take for granted.

In addition, March 17 is not the end of the road but rather the beginning of a new phase of on-going implementation requiring evaluation, monitoring, and public engagement. For example, person-centered planning is at the heart of the Rule, but on the ground we still hear about people who are not meaningfully engaged in the development of their plans, not asked about their interests, and not given real options when “choices” are offered.

The Rule creates a framework that will result in a shared understanding of quality community living. It will take attention, advocacy, and action by all of us to make the promise of the Settings Rule a reality for the people supported by HCBS.

ACL and our networks are committed to increasing public engagement related to the Rule and more broadly around HCBS policy. ACL’s disability and aging networks are so helpful in amplifying the voices of HCBS participants and have served as a resource for important information and facilitating collaboration among states, providers, and people receiving services.

CQL: What is the role of people who receive HCBS in implementation of the Rule moving forward?

Acting Administrator Barkoff: It’s so important that all of us – including people who receive HCBS, providers, and advocates – stay engaged. Being engaged can take many forms, such as providing comments on states’ HCBS waiver applications and renewals or commenting on proposed regulations or policies; participating in task forces or work groups convened by your state; and reviewing state reports that include measures for quality and health and safety. For many, being engaged will also mean developing working relationships across stakeholder groups and with state administrators.

To be engaged, we must all stay informed. ACL is working to educate stakeholders and provide them with information about HCBS and the Settings Rule, especially though our webinars. ACL’s webinars highlight strategies and examples of how powerful the voices of people with lived experience can be in creating more opportunities for choice and control in service delivery and improving the quality of services.

We’re also putting our money where our mouth is by providing resources, information, and guidance on stakeholder engagement to our disability and aging networks, including state developmental disabilities councils; protection and advocacy organizations; university centers for excellence in developmental disabilities; and centers for independent living, as well as the long-term care ombudsman program. This initiative also includes self-advocates as key partners, including Self Advocates Becoming Empowered (SABE) and the Autistic Self Advocacy Network (ASAN). These groups are working together to strengthen the engagement of individuals, families, and advocates in every state.

People with disabilities, older adults, and their families have unique and invaluable perspectives on what is and is not working in their state’s HCBS system. Including their input in the continued implementation of the Rule is not just a nice afterthought, it is a critical requirement of the Rule. ACL’s hope is that the increased involvement of stakeholders at the state level will result not only in full implementation of the Rule, but higher quality of services, more responsive service systems, and lives of self-determination and opportunity for everyone.

CQL: How can people learn more about the HCBS Settings Rule?

Acting Administrator Barkoff: You can find a variety of information and resources on CMS’ HCBS Settings Rule page. CMS recently conducted a presentation about the current state of implementation and also has a great set of slides available that detail observations from recent heightened scrutiny site visits. On the ACL HCBS Settings Rule website, you can find information about the Rule and recordings of our on-going webinar series. You also can learn more about the networks ACL funds and how they are involved in stakeholder engagement.

The Rule’s Impact on People’s Lives

By Mary Kay Rizzolo, CQL President and CEO

As Acting Administrator Barkoff described above, the HCBS Settings Rule addresses quality of life areas such as choices, rights, autonomy, community integration and inclusion, and more. Now, we’re going to hear from some people with disabilities who receive services. They provide personal insight into why those aspects of the HCBS Settings Rule are so important, and how they play out in real life.

These responses were collected through conversations conducted by CQL Quality Enhancement Specialists Lucy Klym and Leanne Mull, as well as other discussions CQL has had with people receiving services. Please note that some of the names have been changed to protect people’s privacy.

What rights are most important for you, and why?

There are so many rights that could be covered, but the people we talked to tended to focus more on ‘everyday’ kind of rights. Stephanie stated that “the right to have a job and get a paycheck” was important to her. Jeff shared that the “right to have things in my house and go where I want to go” ranked towards the top of his list. In listing something that many people might take for granted, James said that “checking the mail” was a right that he truly prized.

Why do you like to have choices?

Chris sums it up perfectly by declaring “choice is empowering!” Providing more specifics on the types of choices he values, Marcus describes “choosing my own schedule is most important. When at home I do what I want, get up when I want, go to bed when I want, talk on the phone to my girlfriend.” Then Sharon lays out how choices have a broader effect, saying “I like to make as many choices as I can. It’s the way I’m going to learn the best, you know, I learn by doing.”

How do independence and privacy make a difference in your life?

In talking about the benefits of independence and privacy, Stephanie shares “I like to be able to sleep and have my own apartment.” This was a constant theme throughout these conversations, with James stating “I can do what I want in my home. I can meet my neighbors in the neighborhood. One gave me a birthday card.” And Jeff adds, “I like to have my own room and bathroom.”

In what ways are you involved in your community?

Being a part of the community is a key component of the HCBS Settings Rule, and this was reflected in our conversations. “I like to go to volleyball, and I like to go the movie theater. Spending time with friends is important to me,” says Stephanie. In describing what he likes to do, Jeff mentions “volunteering each week, going out to Steak and Shake, picking up some beer, and going shopping. These are all the things I like to do.” Echoing these same types of activities, James lists “shopping, going to the bank, going to movies, sports, and the grocery store. I like going to these places.”

How do people show you respect?

Jeff tells us that people show him respect by “letting me manage my schedule. I am working in a schedule so I can still volunteer.” Stephanie describes a demonstration of respect that impacted both her personally as well as her health, “people show me respect by helping me go places. People have respected me during my cancer journey and helping me with appointments.” James responded with “thinking of me,” connecting this value to ideals of compassion and empathy. When it comes to respect, Tina offers the guidance of “give us the same opportunities as everyone else.”

Supporting The Values of the HCBS Settings Rule Beyond The Deadline

By Mary Kay Rizzolo, CQL President and CEO

Like those receiving services made clear, the values of the HCBS Settings Rule can have an impact with benefits far greater than just its listed regulations. These could shift the entire way that supports, services, and programs are designed and implemented. If provider organizations and states can embed these values into their mission and vision and ensure those philosophies play out in practice, compliance with the rule will truly be just a jumping off point. Below, we list out some of these values and link to helpful articles, guides, videos, and more than can assist you in transforming your supports and services.

Choice

Tied to basically all of the values of the HCBS Settings Rule is choice. Where people live, who they live with, what they do during the day, where they work, how they spend their time, which services they receive, who provides those services – people must be making the decisions about things that impact their lives! As provider organizations, you can support people in making informed choices by using approaches such as the Three E’s, which are education, experience, and exposure.

Integration

Another fundamental aspect of the rule is ensuring people are integrated into, and have full access to, the community. This involves where people live and work, such as areas and settings that include both people with and without disabilities. Those receiving home and community-based services should also be active participants in the life of their community, getting involved in groups, activities, and events that appeal to their individual interests and desires. To make that possible, people should also be informed about and use various transportation options including public transportation.

Individual Rights

Everyone has rights. These could include areas like ensuring due process, managing money, using personal possessions, maintaining privacy, and being free from coercion and restraint – just to list a few. The HCBS Settings Rule covers these rights as well as more “everyday” rights such as people decorating their own rooms, having visitors at their home, accessing food, etc. Provider organizations can play a critical role in making sure that agency policies and especially practices – with ‘house rules’ being just one example – don’t intrude on people’s rights. Establishing and maintaining a Human Rights Committee is an essential way to ensure that people’s rights are being promoted and protected.

Independence

As the video ‘Your Services Should Be All About You’ shares, “independence means that you are in charge of making decisions about your life.” Whether it’s living on your own, scheduling your doctor’s appointments, or hanging out with the people you want to, the HCBS Settings Rule aims to advance independence and self-determination for people receiving services. These ideals are vital for people to live meaningful and fulfilling lives of their choosing, and provider organizations must take proactive measures to ensure their services reflect that concept.

Dignity & Respect

One aspect of the HCBS Settings Rule that feels interwoven across all other areas involves dignity and respect. Do you treat adults who receive services as adults? Are the people you support in the ‘driver’s seat’ when it comes to making decisions? Are they getting more services than they actually need? From addressing various forms of ableism, to confronting disrespect in everyday interactions, and ensuring people aren’t ‘over-supported’ by agencies, demonstrating dignity and respect is a core value of the HCBS Settings Rule.

The HCBS Settings Rule: The Spark For Transformation

By Mary Kay Rizzolo, CQL President and CEO

The HCBS Settings Rule provides a powerful blueprint for states and organizations, with accountability to ensure successful implementation. But as any of our partners know, mere compliance is only the beginning.

Hopefully, the rule will spark transformation for the full culture and entire outlook of the disability services system. We’re excited about the promise of what these regulations provide, and even more so the difference it will all make in the lives of people receiving home and community-based services!