Comment #5 (CMS-2249-P2): Standards for HCBS Settings

The CMS proposes standards for settings in which Home and Community Based Services, Medicaid-funded waiver services, may be provided: 

… we are proposing to clarify now that home and community-based settings must exhibit the following qualities, and such other qualities as the Secretary determines to be appropriate, based on the needs of the individual as indicated in their person-centered service plan, in order to be eligible sites for delivery of home and community-based services:

• The setting is integrated in, and facilitates the individual's full access to, the greater community, including opportunities to seek employment and work in competitive integrated settings, engage in community life, control personal resources, and receive services in the community, like individuals without disabilities;
• The setting is selected by the individual among all available alternatives and identified in the person-centered service plan;
• An individual's essential personal rights of privacy, dignity and respect, and freedom from coercion and restraint are protected;
• Individual initiative, autonomy, and independence in making major life choices, including but not limited to, daily activities, physical environment, and with whom to interact are optimized and not regimented; 
• Individual choice regarding services and supports, and who provides them, is facilitated.
• In a provider-owned or controlled residential setting, the following additional conditions must be met. Any modifications of the conditions (for example to address the safety needs of an individual with dementia) must be supported by a specific assessed need and documented in the person-centered service plan
• The unit or room is a specific physical place that can be owned, rented, or occupied under a legally enforceable agreement by the individual receiving services, and the individual has, at a minimum, the same responsibilities and protections from eviction that the tenants have under the landlord/tenant laws of the State, county, city, or other designated entity. [We are soliciting comments as to whether there are other protections, not addressed by landlord tenant law, that should be included]

The proposed rule goes on to describe in even more detail, the requirements of HCBS settings such as privacy in sleeping units, lockable entrance doors, shared units only by individual choice, freedom to furnish and decorate, access to food at any time, individual control of schedules and activities, choice of visitors at any time, and physical access to the setting.

Two more conditions for eligible settings are added:

• Individuals receiving HCBS must not have their independence or freedoms abridged by providers for convenience, or well-meaning but unnecessarily restrictive methods for providing person-centered services and supports; 
• Individuals with cognitive disabilities and other impairments may require modifications of the aforementioned conditions for their safety and welfare.

What is the problem with having stringent standards for HCBS settings? 

My sons have profound intellectual disabilities and function at the level of 6-12 month-old infants. Many of these “standards” have no meaning to them nor are they relevant to ensuring high quality care, appropriate services, and opportunities to interact with other people. For instance, my sons are not able to work and do not need access to integrated employment opportunities. Being able to lock their door has no meaning to them, nor does it matter to them whether they rent, own, or lease the place where they live. Protection of their rights under the law, basic health and safety standards, and proper training of staff are of the most importance for ensuring their comfort and well being than most of the items on this list.

I understand how these standards might be vitally important to a person who functions at a much higher level intellectually and physically, but when standards are written for only higher functioning people they do a disservice to people like my sons. These standards place an extra burden on service providers that may be unnecessary or even contraindicated because of the person’s disability. It would be better to use this list as items for consideration by the person-centered planning team rather than as a list of standards that will ultimately be broken whenever health and safety cannot be maintained.

The person-centered planning process that includes the individual, their family, the professionals who work with them and others of their choosing should be the basis for arriving at a plan of services and determining an appropriate setting. Unless there is something wrong with this process there is no reason to second-guess the decisions that come out of it.