Speaking out for People with
 Intellectual and Developmental Disabilities

VOR Submits Federal Comment: Defining "Community"

June 28, 2012

VOR submitted detailed comments in response to proposed rule CMS-2249-P2 (May 2, 2012) with regard to “Medicaid regulations to provide home and community-based setting requirements of the Affordable Care Act for the Community First Choice State plan option," and for the Medicaid Home and Community-Based Services (HCBS) Waiver, including defining and describing "community."

Summary of Comments

1. Federal law and individual choice

Amendments are needed to ensure adherence to the choice principles espoused in the preamble of the proposed rule and required by federal law. Olmstead supported a range of options. The Court expressly recognized “institutional care” as one legitimate option. The proposed rule must take care not to further limit choice by reducing funding for innovative programs which CMS – not the Supreme Court or even Medicaid law – deem “institutional.”

2. Principles of “community” still biased, risking support for quality residential programs that, in fact, “promote independence and integration”

In the spirit of choice, and in furtherance of federal law, VOR strongly urges CMS to reconsider its position with regard to the provision of home and community-based services on ICFs/MR campuses and planned residential communities for people with developmental disabilities.

We do not agree that proposals by states to provide HCBS on ICFs/MR campuses or planned residentialcommunities “clearly exceed reasonable standards for HCBS,” (77 FR 26378) especially when the provision of such services meets needs, is sought by individuals and their families, and would ensure good outcomes for those served.

3. Person-Centered Planning and the role of families and guardians

Federal law recognizes that individuals and their families are the “primary decisionmakers” regarding services, supports and policies (DD Act, 42 U.S.C. 15001(c)(3)(2000); see also, Heller v. Doe (1993); and Olmstead v. L.C. (1999)). The proposed rule seems consistent with federal law and expressly recognizes that some individuals will not be capable, due to profound cognitive limitations of giving consent and will require assistance in making decisions regard their care and support. These individuals need the protection of legally-appointed guardianship arrangements, preferably by a family member or another individual who is familiar with an individual’s unique needs.

The proposed rule seems to recognize this and, by implication, disavows the prevalent though misguided and dangerous notion that all individuals with intellectual disabilities, no matter the severity, must “self determine” care, medical, and other decisions.

VOR, however, is concerned by the phrase “state rules,” which could be interpreted as guidance other than a state’s guardianship laws. VOR strongly urges that the proposed rule be amended to replace “state rules” with “state guardianship law” to guard against any state-level initiatives (e.g., executive orders) to erode guardianship authority.

4. Modifications to “community” criteria must include safety and welfare

In addition to several criteria which the proposed rule attributes to the “qualities” of “community” (77 FR 26378), the proposed rule seeks additional comment on whether two criteria which are not presently included in the proposed regulation should be added.

Specifically, input is sought on “whether for provider-owned or controlled residential setting, any modification of the conditions must be supported by specific assessed needs and documented in the person centered service plan,” to discourage providers from unnecessarily abridging individual “independence or freedom” for provider convenience, while also recognizing that “individuals with cognitive disabilities and other impairments may require modification of the aforementioned conditions [criteria for community] for their safety and welfare.” The proposed rule indicates that the addition of this provision is being contemplated to “establish that service planning is the process in which these decisions are made, rather than ad hoc on a daily basis.” (77 FR 26379)

VOR strongly supports the inclusion of these criteria.

Read More.

Read Related Comments: 2009 and 2011.