Illinois Department of Human Services
Division of Developmental Disabilities
This Information Bulletin (IB) outlines the requirement that providers will ensure all individuals receiving waiver-funded Home and Community Based Services (HCBS) have the right to engage in community life to the extent they desire. This includes individuals receiving services in individually controlled Community Integrated Living Arrangements (CILAs), provider owned/controlled CILAs, Child Group Homes (CGHs), Community Living Facilities (CLFs), Community Day Services (CDS), and through the Home-Based Services (HBS) program.
The Centers for Medicare and Medicaid Services (CMS) has specific rights that must be afforded to individuals receiving services funded through the HCBS waiver, regardless of the setting type. Among those rights is the expectation waiver participants are assured the right to engage in community life.
Details of the HCBS Settings Rule requirements may be reviewed at 42 CFR §441.301(c)(4)(i-v) and include:
1b) Engage in Community Life.
Right to Engage in Community Life
Individuals have the right to engage in life in the community generally. There are no exceptions to this part of the Settings Rule and therefore, there should never be a modification in an individual's Personal Plan or Implementation Strategy regarding engaging in community life with the very narrow exception of a situation where an individual has been banned from a place due to inappropriate or illegal behavior.
Providers need to support people to engage in community life in the ways they choose. This means responding to and recording choices and expressed interests and supporting those requests as much as they can.
All providers must have a policy affirmatively stating individuals have the right to engage in community life and staff must be trained on the policy and the underlying concept.
People have the right to engage in life in the community to the extent they desire. This means the provider must explore with the individual what it is they would like to do in the community. This can be accomplished through informal conversations, as well as more formally during the annual update of the Implementation Strategy. Community engagement interests identified through the person-centered planning process should be further explored with the individual. It is important to note that not all individuals will have a broad understanding of options available to them in the community. The provider must first gauge each individual's level of knowledge and, where needed, provide advice and counsel on ways an individual might expand their community life. For instance, an individual might like to paint pictures but might not be aware a local art store in town holds a painting class once a week that they might be interested in. In such a case, the provider should tell the individual about the class, encourage the individual to sit in on a class as an observer after which the individual determines if they are interested in attending as a participant. In addition, providers should consider using community mapping to identify opportunities existing in the community that may line up with individual's expressed interests. Community mapping is a process designed to carefully scan the target community, looking for all opportunities for activities, and gathering them into one place. Activities can be wide-ranging, from volunteering to formal classes to houses of worship to work opportunities. Providers should use both formal contacts (e.g., notices in the local newspaper, community college class catalogues) and informal contacts (e.g., talking with staff about activities in the community they engage in) to create the community map. Once initially complete (the community map should be fluid to reflect new opportunities that arise), the map can be a useful tool to assist in aligning individual's choices and preferences with community activities in which they can engage.
Engaging in community life can be very specific to the individual, as in the example above, or more generalized to all individuals living in the home. Generalized examples might include going to the grocery store, the dentist or the doctor. The extent to which an individual or group of individuals engages in life in the community depends upon their desire to do so. Some individuals might enjoy more home time than others. If an individual prefers to stay home, it should be documented in the personal plan and implementation strategy, and at least annually, the provider and Independent Service Coordination (ISC) agency should reassess the individual's desire to spend more time in the community. Staying home should not be for the convenience of the provider.
Independent Service Coordination (ISCs) agencies will share the IDHS: Rights of Individuals Form, IL462-1201.pdf (state.il.us) when they initiate services and annually thereafter 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. Providers are welcome to develop and share additional information with individuals as well.
Providers must train all staff on the concept of what it means to engage in community life and the importance of assisting individuals to access the community in areas of interest to the individual.
If an individual, guardian or concerned person does not feel an individual 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 complaint 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 12/18/23.