Illinois Department of Human Services
Division of Developmental Disabilities
This Information Bulletin (IB) outlines the requirement that all individuals receiving Home and Community Based Services (HCBS) waiver-funded services, regardless of the setting, must be able to have visitors of their choosing at any time. 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 of 16 residents or fewer), Community Day Service (CDS) programs and through the Home-based Support (HBS) Services program.
The Centers for Medicare and Medicaid Services (CMS) has specific rights that must be afforded individuals receiving services funded by a HCBS waiver, regardless of the setting type. Among those rights is the expectation that waiver participants are assured the right to have visitors of their choosing at any time.
Details of the HCBS Settings Rule requirements may be reviewed at 42 CFR §441.301(c)(4)(i-v) (https://www.medicaid.gov/medicaid/home-community-based-services/guidance/home-community-based-services-final-regulation/index.html) and include:
7) Individuals are able to have visitors of their choosing at any time.
Right to Have Visitors of Their Choosing at Any Time
For purposes of this policy, a visitor is a person who comes to the home or a CDS site for a limited period of time.
Individuals have the right to have visitors of their choosing any time in their homes or at a CDS site unless there is a clearly identified and documented safety concern regarding a specific potential visitor. 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 IB. A parent/guardian's desire to restrict visitors, absent a clearly defined safety concern, does not constitute an assessed need. Guardians will first use "Substituted-Judgment", which requires that when the individual can express preferences, the guardian should act in conformity with those preferences unless it is clear that substantial harm would result to the individual. If an individual is unable to express preferences, then the guardian will make decisions in the "best interests" of the individual. Further detail is provided in this factsheet created by the Guardianship and Advocacy Commission: HCBS Setting Requirements and Guardianship (illinois.gov).
No provider may have a policy or practice that prohibits the right of an individual to have visitors of their choosing at any time unless there is an assessed and documented safety concern, in which case the provider must follow the Human Rights Committee (HRC) rules and regulations for rights restrictions and the modification requirement set out in the Settings Rule and at the end of this IB.
If there are any concerns about a specific visitor inciting unsafe activities (e.g., elopement), ISCs, providers, individuals and guardians (as appropriate) should work together on necessary modifications. For more on the modification process, please see the last section of this IB.
Right to Visitors in the Home
- Individuals living in a waiver funded residential setting, whether individually-controlled or provider owned/controlled or living in the family home receiving HBS services must be afforded the right to have visitors of their choosing at any time.
The residents of a home may choose to collectively establish rules for the home pertaining to visitors as a means to maintain harmony in the house (e.g., no loud parties after 11:00 pm on weeknights.). However, any rules must be mutually agreed upon by all residents. If there is a disagreement between housemates, the provider and ISC can support conflict resolution discussions and individuals may consider changing living arrangements to address their preferences.
- Providers may not establish visiting hours, nor can they establish a policy requiring advance notification of intended visits.
- It is allowable for a visitor to stay overnight for short-term visits. If an individual who chooses to have a visitor stay overnight has a roommate, the roommate should be consulted prior to the overnight visit. If the roommate does not want the overnight visitor to stay in their bedroom, conflict resolution with the ISC and the two roommates should be initiated.
Right to Visitors at Community Day Services (CDS)
- Individuals attending a waiver funded CDS program must be afforded the right to have visitors of their choosing at any time.
- Providers are free to establish a designated area in the building where individuals may meet their visitors.
- Providers may not establish visiting hours, nor may they establish a policy requiring advance notice of intended visits.
- If concerns arise with visitors, the provider can work with the individual and ISCs to address any conflict.
Modification of the Right to Have Visitors of Their Choosing at Any Time Requirement
- Modifications are considered a deviation from the individual's right to have visitors of their choosing at any time. 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 HRC 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 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 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 must address the specific supports that will be provided to assist them to have visitors of their choosing at any time.
Responsibility of the Independent Service Coordination (ISC) Agency
- The Independent Service Coordination (ISC)agency is responsible for ensuring the Personal Plan and Implementation Strategy document the modifications at the time of initial modification and are updated as appropriate per periodic review.
- The ISC will work with the provider agency to provide available supporting documentation in the Personal Plan that reflects the need for modifications.
Responsibility of the Provider in the Event of an Emergent Situation
Should a situation arise where a safety concern has been identified but there is no modification dealing with the safety concern currently in place, providers should first address the immediate concern, assuring the safety of the individual. For example, if a visitor with no previously known aggression issues suddenly becomes aggressive toward any of the individuals in the home or CDS site, the visitor should be immediately removed from the property and barred from re-entry pending a meeting regarding a possible modification to the individual's Personal Plan. Once the safety concern has been addressed, the ISC should be notified of a potential need for a modification and document the notification has been made, as well as the steps already taken to assure the individual's (and all others in the home or CDS site) safety. In addition, the provider should initiate the HRC process, where appropriate. Documenting the steps that have been taken will be important should a state or federal regulator visit the site before the modification process has been completed.
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 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.