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, have the right to privacy. 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 spaces where Home-based Support (HBS) Services are provided (residence, bedroom, CDS, etc.).
The Centers for Medicare and Medicaid Services (CMS) has specific rights that must be afforded to individuals receiving services funded by an HCBS waiver, regardless of the setting type. Among those rights is the expectation that waiver participants are assured the right to privacy in their homes, day programs and bedrooms.
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:
3a) The setting ensures an individual's right to privacy.
Right to Privacy in Their Home, Day Program and Bedroom
Individuals have the right to privacy in their home, day program and bedroom unless there is a clearly assessed and documented concern regarding affording an individual such privacy. In such cases, the assessed and documented 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 to privacy unless there is an assessed and documented 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.
Right to Privacy 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 privacy in the home and in their bedroom.
For a provider to be able to assure this right, it must first understand what people want and what is important to them related to privacy. This information can be gathered through informal conversations with an individual in the home but must also be explored by the ISC through the person-centered planning process. Once it is known and understood what an individual wants, the provider must work to support that desire. A guardian can and should be included in the conversation about what privacy means to the individual. 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). The individual's privacy should not be more limited than what they desire unless a safety concern is identified by the guardian, in which case a modification must be put in place. See Modification of the Right to Privacy section below.
- Privacy in the home would include the ability to speak on the phone without others listening in, having alone time in their bedroom as wanted or needed, and opportunities to refrain from participation in group activities in the home as desired.
- If an individual indicates a desire to have a bedroom of their own, this should be documented, and steps taken to address it. In the meantime, if an individual with a roommate desires alone time in the bedroom, the provider should work with both individuals to create appropriate opportunities for privacy in the bedroom. Should it become apparent the provider cannot provide the individual with a bedroom of their own in their current home, efforts must be made to identify other options, such as a possible move to another home within the provider's control or to another provider who is better situated to provide the single bedroom. The ISC will facilitate this process on behalf of the individual.
- Cameras may only be used in common areas of the home and only with the express approval of all residents. Information about an individual's right to electronically monitor their bedroom can be found in the information bulletin, IDHS: CILA and DD Facilities Electronic Monitoring Forms and Process (state.il.us)
Right to Privacy at Community Day Services (CDS)
- Individuals attending a waiver funded CDS program must be afforded the right to privacy while at the day program. This would include privacy while using or being assisted to use the bathroom, taking a telephone call, receiving a visitor or moments when an individual needs some quiet time to themselves. Providers should establish a designated area for individuals who need privacy to be able to access it.
- If concerns arise with providing an individual with privacy at the day program, the provider can work with the individual and ISCs to address any conflict.
Modification of the Right to Privacy Requirement
- Modifications are considered a deviation from the individual's right to privacy. 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 (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.
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.