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

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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:

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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