Home & community-based waivers a step in the right direction for youth and families

January 11, 2014

The Centers for Medicare & Medicaid Services (CMS), HHS, just published a final rule on Home and Community-Based Services (HCBS). For those states that choose to pursue an HCBS waiver this final rule means great things for youth with emotional challenges and their families regarding the flexibility and opportunity to provide services and supports that are more closely aligned with what youth and families need, not necessarily what a particular provider has to offer.

Got your attention yet?

Let me state it differently. For many years those of us in the system of care world have talked, argued, pleaded and begged for a broadening of Medicaid coverage of service and supports that families say they need but may not be a part of the traditional array of options available to them. This final ruling opens the opportunity for states to move from the rhetoric of “family-driven and youth guided” into an era where they are actually approving Medicaid funding for services and supports based on what individuals say they need rather than what may or may not be available in an existing provider pool.

The Final Rule is a whopping 371 pages long but don’t let that deter you. I encourage you to read it. I read it over the weekend and I gotta tell you it was a page-turner, full of comments from advocates, citizens, providers and rationale from CMS about why they incorporated some comments and did not incorporate others into the Final Rule. Okay, so maybe not on par with a John Grisham novel, but just about as good. I especially encourage care coordinators, case managers and peer partners to read it. Why? Because if you approach it not as a “rule” with acronyms, codifications, extremely long section headings that appear to have been written by a cryptologist… If you encourage yourself to not get caught up in the technicalities of the document but to let it breathe, hear its heartbeat if you will, then you will see why this Final Rule opens up exciting opportunities for youth and families. Each area that received comment (thank you Network faithful for weighing in!) is addressed by CMS in this document. Reading the entire document opens a window into what advocates, providers and end users of service are thinking about critical issues like consumer choice, integration into the community, clarification of what is an institutional setting and what is not, quality assurance, person-centered planning vs. family-driven planning and more.

The bottom line for this rule is that states have the opportunity to design and tailor Medicaid services to better accommodate individual needs and make sure that “ individuals with disabilities are supported in the most integrated setting possible.”

If you are an advocate and want some muscle in your array of tools when discussing service and support options funded through Medicaid in your state this is one document you want to have. And if you are really serious your copy will be full of highlights, sticky notes and bookmarks – it’s that rich in what it says. But as we all know, the important challenge is moving from what is said in this Final Rule to actual implementation. This document can help you get there. Here are just a few “quotables” from the Final Rule. We include a “CMHNetwork translation at the end of each quoted section. The document is full of fabulous information that you can use to leverage the rights of youth and families so you will want to skip whatever show you were going to watch tonight and devour the entire document:

  • Page 16, 17 – “While HCBS are not available while an individual resides in an institution, HCBS may be available to assist individuals to transition from an institution to the community. Recognizing that individuals leaving institutions require assistance to establish themselves in the community, we would allow states to include in a section 1915(i) benefit, as an “other” service, certain transition services to be offered to individuals to assist them in their transition to the community… Importantly, these services must be exclusively for the benefit of the individual, not the hospital, [our bold] and must not substitute for services that the hospital is obligated to provide through its conditions of participation or under federal or state laws.”

    Page 27 – “… we note that the “other services” specifically referenced in the statute may include coverage of services not designated in the list of specific services, and gives states the flexibility to propose and define other specific services.”

    CMHNetwork translation: Services and supports can be made available that are “exclusively for the benefit of the individual.” Advocates need to be working with state officials to better define what those services and supports should look like. Note: CMS will be providing examples of “other services” in future guidance (page 28). Be ready to comment when this happens Network faithful!

  • Page 29 – (comment)  “Some individuals may need assistance from their personal care provider to communicate their needs, medical history, redirect behaviors, and provide consistent person-directed physical assistance. Most hospitals do not have adequate, nor trained staff to provide the level and type of ongoing ’personal care’ many people using HCBS require. Providing continuation of HCBS while someone is in a hospital is not letting hospitals avoid their responsibilities, but rather acknowledging the reality that their focus/responsibility is on ’medical care’, while HCBS’ focus is on ‘personal care’.”
    (CMS response) We agree with the second commenter and believe that this should remain an option afforded to the state subject to the conditions and limitations stated in our rule. To support program integrity, states are required to perform claims edits or adopt other systematic approaches that prevent duplicate payment.
    Translation: For those eligible who need acute care, HCBS services can stay in place as long as they are not duplicative of hospital efforts. For those advocates who deal with the challenge of silo approaches to care when crises come up, this is an important component of the final rule to remember.
  • Page 39, 40 – “We believe the requirements we are finalizing are critical to ensure that individuals have the opportunity to receive services in a manner that protects individual choice and promotes community integration.” (page 43) “States must ensure that when an individual chooses a home and community based setting, the individual has made an informed choice among options.”
    Translation: These are your “back of the business card” descriptions of the 371-page document. Bottom line, this is about individual choice and broad integration into the community. Music to the ears of Network faithful!
  • Page 108 – “Several commenters supported the language as written, stating appreciation that CMS has clarified that the term “community” refers to the greater community and not solely a community of one’s peers and, that integration also means more than integration in a community of peers.”
    Translation: The often-overlooked definition of “community” being more than just a community of peers is an important distinction for advocates to keep in mind when assessing state plans utilizing these waivers. Pay attention to this one when discussing innovative approaches to community integration in your state.
  • Page 146 – “These requirements describe a person-centered assessment including behavioral health, which will take into account the individual’s total support needs as well as the need for the HCBS to be offered. Section 1915(i)(1)(E)(ii) of the Act requires that states use the assessment to: determine the necessary level of services and supports to be provided; prevent the provision of unnecessary or inappropriate care; and establish a written individualized service plan. To achieve the three purposes of the assessment listed above, the assessor must be independent; that is, free from conflict of interest with regard to providers, to the individual and related parties, and to budgetary concerns.”
    Translation: Family and peer partners should not let this one slip by. Those providing assessments need to be free of any conflict of interest with providers so that they can remain solely focused on the needs of the individual.
  • Page 210, 211 – “Comment: One commenter recommended that CMS require that states make publicly available targeting, phase-in, and quality improvement plans, including by posting on public websites.
    Response: At this time, we do not post state plans on our website. We are working on a project to make approved state plans publicly available. We encourage states to provide for effective public engagement in all of their Medicaid program activities, and states are required to provide 60 day public notice when states change reimbursement methodology or revise CMS approved section 1915(i) of the Act needs-based criteria.”
    Translation: We will keep a watchful eye and let you know when CMS completes their project to make state plans publicly available. This will be immensely helpful for cross-state learning, not to mention providing another level of public accountability – always a good thing!
  • Page 225 – “We received 286 comments about person-centered planning, most indicating how important it is to individuals that HCBS are provided in a manner that supports their values and preferences, rather than to satisfy an impersonal or provider-centered plan of care. In the comments immediately below we outline the suggestions that do not directly affect the regulatory language, and indicate in some cases where we will consider these ideas in developing future guidance.”
    Translation: At a minimum, read this section. The issue of what is meant by “person-centered planning” and how similar or dissimilar that is to “family-driven planning,” continues to evolve with discussions around language in rules such as this one. An important takeaway is that CMS appears to be listening to all comments and is keeping an open mind about the language they use in the Final Rule. For you college professors reading this Morning Zen post, this section alone would make for a great debate topic in any health, psychology or social work class that focuses on individual choice in the treatment planning process.

Okay Network faithful, you get the idea. Curl up by the fire and read the Final Rule. And then, speaking of fires, light one under your state officials if they have not yet applied for one of these waivers. In fact, we would love to hear from some of you who have applied and are implementing an HCBS waiver. Let us know your experience and the benefits you are realizing for youth with emotional challenges and their families.

Scott Bryant-Comstock
President & CEO
Children’s Mental Health Network

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