Illinois Department of Human Services
Division of Developmental Disabilities
This Information Bulletin (IB) outlines the requirement that all individuals receiving the Home and Community Based Services (HCBS) waiver-funded residential services must be able to choose their roommate, if they are sharing a bedroom. This includes individuals receiving services in individually-controlled Community Integrated Living Arrangements (CILAs), provider owned/controlled CILAs, Child Group Homes (CGHs), and Community Living Facilities (CLFs of23 16 residents or fewer).
The Centers for Medicare and Medicaid Services (CMS) has specific rights that must be afforded individuals receiving services funded by the HCBS waiver, regardless of the setting type. Among those rights is the expectation that waiver participants are assured the right to choose their roommate, if sharing a bedroom.
Details of the HCBS Settings Rule requirements may be reviewed at 42 CFR §441.301(c)(4)(i-v) and include:
11c) Individuals sharing units have a choice of roommates in that setting.
Right to Choose Their Roommate
Individuals have the right to choose their roommate when living in a home where it is necessary to share bedrooms unless there is a clearly identified and documented safety concern regarding a potential roommate. In such cases, the safety concern must be based on individually assessed needs and documented in the Personal Plan and Implementation Strategy, as indicated in the Modification section of this bulletin.
No provider may have a policy or practice that prohibits the right of an individual to choose their roommate unless there is an assessed documented safety concern, in which case the provider must follow the Human Rights Committee rules and regulations for rights restrictions and the modification requirement set out in the Settings Rule and at the end of this IB.
In situations where an individual was sharing a bedroom prior to the State's implementation of the Settings Rule, where the individual did not get to choose their roommate, the Independent Service Coordination (ISC) Agency and provider should confirm with individuals their preferences. This can be done through an informal process of talking with the individual to learn their preference regarding a roommate but must be incorporated into the annual person-centered planning process.
Should the individual express a desire to change roommates, or request to have a bedroom without roommates, it is the provider's responsibility to take steps to make this happen. That could be through reconfiguring roommates in the present home, provided all residents are happy with the new arrangement, or by offering to move the individual to a different home under the provider's control or creating a new opportunity in a home or apartment where the individual and, perhaps, a roommate of their choice relocate. If the provider is unable to make adjustments within its provider-controlled homes to satisfy the individual's choice of roommate, the ISC should have a discussion with the individual about the possibility of looking for another provider.
It is understood that assisting an individual to realize their desire to choose their own roommate can take some time. It is very important that the provider document the individual's choice and the provider's efforts to make the choice a reality. Should a state or federal regulator visit the site, the provider should be able to produce written documentation on its efforts to comply with this section of the Settings Rule.
The Independent Service Coordination (ISCs) agencies share the IDHS: Rights of Individuals Form, IL462-1201.pdf (state.il.us) annually and require a signature from the person and/or guardian. Providers also should share the document and review it with individuals whom they support as well as staff. The Rights of Individuals Form should be shared with all individuals when they initiate services, whether residential or community day services, and annually. Guardians should also be provided a copy of the rights document. Providers are welcome to develop and share additional information with individuals as well.
Modification of the Right to Choose a Roommate Requirement
- Modifications are considered a deviation from the individual's right to choose their own roommate. It must be supported by a specific, individually assessed need and justified in the Personal Plan. Modifications also must be reviewed by the Human Rights Committee (HRC) or Behavioral Management Committee (BMC) and must comply with the process outlined in Rules 115 and 120. The HCR manual details the process for HRC reviews. The Personal Plan and Implementation Strategy should include the following:
- Specific and individualized assessed need for which the modification is required.
- Less restrictive interventions and supports attempted without success prior to imposing any modifications.
- Data collection and review of less restrictive interventions and supports. In addition, if the modification is needed due to the presence of behaviors that pose a risk to the individual or others, include collection and review of data related to the effectiveness of methods used to reduce the undesired behavior.
- Schedule of periodic reviews of data as outlined in the Behavior Intervention And Treatment Implementation And Billing for a rights restriction.
- Assurance that interventions and supports pose no harm to the individual.
- Informed consent of the individual and the individual's guardian, if applicable.
- The prospective, or current residential provider agency, is responsible for providing items 1-6 above and documenting these items in the Implementation Strategy. In addition, the Implementation Strategy of all other individuals living in the home who are interested in choosing a different roommate must address the specific supports that will be provided to assist them to have a roommate of their choosing at any time.
Responsibility of the ISC Agency:
- The ISC is responsible for ensuring that the Personal Plan and Implementation Strategy documents the modifications at the time of initial modification and are updated as appropriate per periodic review.
- The ISC will work with the residential provider agency to provide available supporting documentation in the Personal Plan that reflects the need for modifications.
If an individual, guardian or concerned person does not feel a person is receiving services compliant with the HCBS Settings Rule, they can report this to the provider or to the ISC. They can also go through the formal HCBS Settings compliant process by using the web form: IDHS: DHS DD Services Complaints (state.il.us), email: DHS.HCBScomplaints@illinois.gov or phone number: (877) 657-0005.
This Information Bulletin is effective 12/18/2023