The Council on Quality and Leadership (CQL) published the below Q&A with ACL Acting Administrator and Assistant Secretary for Aging Alison Barkoff about the Home and Community Based Services (HCBS) Settings Rule in their latest Capstone newsletter.
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.