Comment #6 (CMS-2249-P2): Limiting Choice by Eliminating Needed Options

The proposed rules contemplate eliminating choices that are deemed “institutional” at the discretion of the Secretary of Health and Human Services:

We note that home and community-based settings do not include nursing facilities, institutions for mental diseases, intermediate care facilities for mentally retarded, hospitals, or any other locations that have the qualities of an institutional setting as determined by the Secretary. In considering whether a setting has the qualities of an institutional setting, we will exercise a rebuttable presumption that a setting is not a home and community-based setting, and will engage in heightened scrutiny, for any setting that 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. We expect to issue further guidance regarding such settings. Other characteristics that could cause CMS to consider a setting as “institutional” or having the qualities of an institution would include, but not be limited to, settings which are isolated from the larger community, do not allow individuals to choose whether or with whom they share a room, limit individuals' freedom of choice on daily living experiences such as meals, visitors, and activities, or limit individuals' opportunities to pursue community activities.

Some of the most creative living arrangements that I have seen or read about have come from parent groups that have designed housing and living situations that fit the needs of their disabled family members. These groups are exceptionally frugal because they have to be. They are usually limited financially and they form strong bonds with community organizations, including churches and other non-profits, to help them achieve their goals.

HCBS waivers can be a major source of funding for individuals participating in these very specialized programs and living arrangements that are usually enthusiastically supported by the individuals themselves and their families. “A rebuttable presumption” that they are somehow “institutional” as determined by and at the discretion of the U.S. Secretary of Health and Human Services could very well harm or destroy some of these projects that have that have involved their communities in being part of their success.

Delete any language that would limit options that are person-centered, consumer-driven, and based on choice.