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What's this all about?
The Centers for Medicare and Medicaid Services (CMS) is the federal agency that regulates Medicaid. Medicaid Home and Community Based Services (HCBS) are funded under a variety of waivers - in Michigan, the Habilitation Supports Waiver (HSW) is targeted to fund services for people with developmental disabilities. Other services more generally available to people served by the mental health system in Michigan are provided under a State Plan approved by CMS. State Plan services cover most services under the HSW with a few exceptions. The proposed rules, CMS-2249-P2, are intended to apply standards for Home and Community Based Services uniformly for state plan and waiver services.
The most controversial and potentially disruptive part of the proposed rules are the standards that they set for "community settings" where Home and Community Based Services are provided. Under Medicaid law governing HCBS there is an explicit prohibition against using HCBS funding in institutional settings - nursing facilities, institutions for mental diseases, intermediate care facilities for the mentally retarded, and other hospital settings. Institutional settings have their own Medicaid funding streams. Home and Community Based Services, such as those covered by Michigan's HSW for people with DD, are intended as an alternative to services provided in an institution. Another prohibition is that HCBS funding cannot be used to pay for room and board. In other words, the funding is for services provided outside of an institution and not for housing and food.
Although Congress has had many opportunities to further restrict HCBS funding in Medicaid law, it has apparently chosen not to do so. The standards that CMS proposes, however, would limit HCBS funding to settings that meet the narrow CMS definition of "community".
The rules propose a "rebuttable presumption" that a setting is not a home and community-based setting if "it is located in a building that is also a publicly or privately operated facility that provides inpatient institutional treatment, or in a building on the grounds of, or immediately adjacent to, a public institution, or disability-specific housing complex". In addition, the Secretary of U.S. Health and Human Services (HHS) has the power to determine unspecified other "qualities of an institutional setting" that do not qualify as Home and Community-based settings.
One can assume that a "rebuttable presumption" is difficult to overcome. The proposed rules do not make clear who is entitled to rebut the presumption (an individual or the person's guardian? the state?) and how and where do they do this? If the Secretary of HHS can apply standards that involve not only the setting in which one receives services but also the qualities of settings in close proximity and also has the power to determine unspecified other "qualities of an institutional setting", it would seem virtually impossible for any stakeholder to make a case that something is "community enough" or not "too institutional" to warrant HCBS funding.
The rule provides such stringent, inflexible discretion to find HCBS eligibility, that the "rebuttable presumption" opportunity is an empty one. Do the "unspecified qualities" also have a rebuttable presumption of not meeting the definition of "Community"? How does the Secretary of HHS determine the "appropriateness" of a setting absent knowledge of the needs of the individual? It would make more sense to have a "rebuttable presumption" that the decisions reached by a person-centered planning team determine the appropriateness of services and the most integrated setting appropriate to the needs of the individual.
Community and Institutional Characteristics
In the proposed rules, CMS narrows the definition of "community" while at the same time expanding the definition of an institution. It defines the "characteristics of an institution" in order to restrict funding for settings considered to be too "institutional." This restriction will make it more difficult for many individuals to access services in settings appropriate to their needs. Medicaid law for Home and Community Based Services does not restrict services or settings in which services are provided to those without characteristics of an institution. The Supreme Court in Olmstead in interpreting the ADA found that, "…nothing in the ADA or its implementing regulations condones termination of institutional settings for persons unable to handle or benefit from community settings...Nor is there any federal requirement that community-based treatment be imposed on patients who do not desire it.” If institutions are not prohibited, why would CMS limit community services and settings based on their "institutional qualities"?
Harmful effects of CMS rules
Before moving forward on the implementation of these rules, CMS needs to assess the harm they might inflict. In Michigan, there are many innovative programs and residential settings that were initiated by families and exist partly because Medicaid waivers have been flexible enough to fund services for people choosing to participate in these programs. Many of these programs would not meet the stringent definition of "community", because they are specialized for people with more severe disabilities and serve them in congregate (though certainly not isolated) settings. They are very much a part of their communities, with strong financial and moral support from families, religious organizations, local civic organizations, and other community groups. Taking away HCBS waiver funding could jeopardize these programs or force them to start accepting only private-pay participants. Programs such as these should be models for the innovative ways they serve people with severe disabilities, for the ways they fund programs by marshaling community and public resources, and for innovative ways of building communities for the people they serve, building on relationships with families and friends and expanding into the larger community in ways beneficial to both the community and the individuals served.
Although the comment period for the CMS proposed rules ended a year ago, that does not mean that you have to wait passively for a decision to come down from the federal government on whether these rules will be implemented as written. If you object to these rules, send an email to Kathy Poisal at CMS and to your U.S. Representative and U.S. Senators. These rules do not have to be approved by Congress, but objections by your legislators in Congress can have an effect on whether CMS choses to implement the rules as written. Congress can also hold hearings, ask that the CMS open another period for comment, and legislators can make their own opinions known, such as in this letter from Michigan U.S. Representative Bill Huizenga, and another letter from a Congressman in California.
Other suggestions: Make the subject line of your email a pithy description of the subject you are communicating such as "Oppose CMS rules CMS-2249-P2" or "Comments on CMS-2249-P2" . Make sure to include the reference to CMS-2249-P2 in the body of your email to identify the specific proposals you are commenting on. U.S. legislators usually respond to hand-written, personal letters from constituents, but these should be faxed and not sent by U. S. mail. (Because of security precautions, mail sent through the U.S. postal service can take weeks before it reaches a legislator's office.) Be brief and to the point. If you have a family member or someone you know who might be affected by these rules, say so.
Here is a link to the Federal Register for May 3rd, 2012 that includes the proposed rules CMS-2249-P2.
Other comments on the rules can be found here and here .
Other reasons to object to CMS-2249-P2: they interfere with the authority of guardians ; they undermine decision-making by the person-centered planning team; and they limit choice for all as protected by law.