Dear fellow advocates:
I would like to share with you some of the key highlights from this year’s National HCBS Conference. The conference hosted over 1,500 attendees, many of whom were federal, state and local policymakers and those who administer, manage, and deliver waiver and other HCBS programs.
This post will be focusing on speakers from the U.S. Department of Health and Human Services (HHS) including the Administration for Community Living (ACL) and the Centers for Medicare & Medicaid Services (CMS).
CMS Intensive Session
Notes from CMS Director Ralph Lollar’s presentation:
The Settings Rule does not prohibit specific types of providers.
The point is to keep and grow HCBS providers and to increase the quality and enhance the experience of HCBS.
HCBS has always grown and expanded.The Settings Rule will enhance choice.
If the individual being served is a homebody and wants to be a homebody, he or she can be a homebody.
If the individual is a social butterfly and wants to be out and about he or she can do that.
The key is to include the individual’s preferences in his or her person-centered plan. You don’t want to assume a person wants to be a homebody until you understand what’s in his or her plan.
The Settings Rule’s reference to food choices: there’s a myth that the Rule means there must be a 24-hour buffet. No, the Rule simply means that if an individual misses a meal, he should be able to grab a glass of milk and an apple.
Notes from CMS Senior Policy Advisor Melissa Harris’ presentation:
Settings under heightened scrutiny require a special look. This doesn’t mean they are prohibited.
Isolation can occur regardless of where the setting is located. Isolation is about the way the services are delivered. (i.e. Are individuals told “everything you need is right here.”)
Settings with the effect of isolating individuals does not refer to rural settings; isolating settings can be urban or rural.
Focus is on the person-centered plan.
In a follow-up conversation with Harris and Lollar, I brought up a number of examples of how some states are refusing to allow HCBS funding for existing disability-specific settings and are discouraging new developments based on CMS’s subregulatory guidance on “Settings that Isolate.” Both Harris and Lollar said that the new CMS guidance should clarify some of these issues and that the states should stop blaming CMS for state-specific restrictions. Yes, the new guidance is coming.
When I asked how much time people should be spending outside of their settings, Harris and Lollar said that CMS does not prescribe how often individuals with I/DD should go out or how much time they need to spend outside of their settings since every individual is different. They brought up the importance of person-centered planning again and said that if a setting achieves what is documented in the person-centered plan, it should be in compliance with the Settings Rule.
Administration for Community Living (ACL) Track Session:
The Community Conundrum – Promoting Optimal Inclusion & Improved Social Determinants of Health within HCBS Settings
Melissa Harris expressed the following key points:
"Integration for me, is not integration for you."
"Integration for me today may not be integration for me in 3 years."
Serena Lowe, ACL
Individuals still lack natural support and normal relationships. There are too many artificial environments.
The best places to learn how to live and work in the community are in the community
Our buildings should be places for people to come and go – not to stay
Many current agency business models are based on people coming to the agency facility (centralized)
Agencies should provide support to people where they are –not at centralized places
Individuals with I/DD should make their own decision, not their guardian.
This picture was the last slide of the session, which was presented by a different speaker. The last bullet point says:
"Community integration and person-centered supports are valued and desired outcomes not because the HCBS Settings Rule say so, but because they are evidence-based approaches that increase and preserve Health, Safety, Skills for Independence, Access to Natural Supports, Access to Valued Social Roles, Increased Self-Esteem and Increased Personal Control."
I asked Serena Lowe to clarify what she meant when she said, “a setting should be a building where people should come and go, not where they stay.” I also asked, “How do you define community? For some people, a community can be a large campus setting where they live, work and receive services on-site and they’re mostly with their peers with I/DD.”
I also said, “No wonder states are confused. You talk about choice and person-centered planning and then you talk about what you think community should look like. How is this really person-centered when the government is trying to prescribe peoples’ lives?”
Serena Lowe said that the statements were collected from a group of HCBS service providers. She also said that the federal government was only setting the floor and that state governments could be more restrictive on the HCBS settings. Melissa Harris said that the Settings Rule does not prohibit campus settings and that it does not require someone to go in and out of the setting. Again, she pointed back to person-centered planning.
While we applaud CMS's person-centered and outcome-oriented approach, we are still seeing too many states believing that CMS does not allow rural or gated settings, farmsteads or other disability-specific settings. As it happens with many big conferences, there were many different sessions and not everyone heard what Ralph Lollar and Melissa Harris said about intentional communities and choice.
Throughout the conference, we engaged in many conversations with people from CMS, ACL and other agencies, voicing our concerns about the Settings Rule and other critical issues pertaining to choice and options for individuals with intellectual and developmental disabilities. We want to encourage you to attend the HCBS conference next year. This is where you can connect and build relationships with key influencers and decision makers at the state and federal level. They need to hear from you. Let’s maximize our visibility and strengthen our presence!
Lastly, please join us at the 2018 Together for Choice conference. It will be a wonderful gathering of self-advocates, family advocates and service providers from across the United States. Let’s come together and keep this important dialogue open. We will share stories, learn from each other and encourage one another. As Simon Sinek writes in his book, Leaders Eat Last, “There are few feelings that human beings crave more than a sense of belonging…the feeling of being inside a Circle of Safety.”
See you in Chicago!