DRAFT - Individuals Have the Right to Privacy in Their Sleeping and Living Unit in Waiver-Funded Settings Information Bulletin

Illinois Department of Human Services 

Division of Developmental Disabilities 

Information Bulletin

DD.25.XXX

Purpose:

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 in their sleeping and living unit. This includes individuals receiving services in all intermittent, Host Family and 24 Community Integrated Living Arrangements (CILAs) both individually and provider owned/controlled, Community Day Service programs (CDS), Child Group Homes (CGHs, where individuals aged 18 and up are receiving services), Community Living Facilities (CLF of 16 or fewer beds) and through the Home-based (HBS) Services program. For youth under 18 living in CGHs, the rights and modifications allowable under the HCBS Settings Rule should be implemented similar to that of youth of the same age not receiving waiver services including independence, autonomy and privacy.

Background:

The Centers for Medicare and Medicaid Services (CMS) has specific rights that must be afforded individuals receiving services funded by an HCBS waiver, regardless of the setting type. Among those rights is the expectation that waiver participants have the right to privacy in their sleeping or living unit. An individual's living unit includes their apartment or home.

Details of the specific requirements may be reviewed at 42 CFR 441.301(c)(4)(vi)(B)

Each individual has the right to privacy in their sleeping or living unit:

  1. Units have entrance doors lockable by the individual, with only appropriate staff having keys to doors.
  2. Individuals sharing sleeping or living units have a choice of roommates in that setting.
  3. Individuals have the freedom to furnish and decorate their sleeping or living units within the lease or other agreement;

Policy:

Right to Privacy in Their Sleeping or Living Unit:

Individuals have the right to privacy in their sleeping and living unit 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 of an individual to privacy in their sleeping or living unit.

Implementation:

  1. 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.
    1. 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 and documented. Once it is known and understood what an individual wants, the provider must work to support that desire. A guardian should be included in the conversation about what privacy means to the individual. Guardians and providers must use "Substituted-Judgment", which requires that when the individual can express preferences, the guardian and provider 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 and provider 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 provider, in which case a modification must be put in place. A provider cannot implement a modification based solely on a guardian's request and the modification must be supported by an individually assessed need. See Modification of the Right to Privacy in Their Sleeping or Living Unit section below.
  2. 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.
  3. 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.
  4. Cameras may only be used in common areas of the home and only with the expressed approval of all residents. Information about an individual's right to electronically monitor their bedroom can be found in the Information Bulletin DD.20.017: IDHS: CILA and DD Facilities Electronic Monitoring Forms and Process (state.il.us).

Modification of the Right to Privacy in Their Sleeping and Living Unit Requirement:

  1. Modifications are considered a deviation from the individual's right to privacy in their sleeping and living unit. 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:
    1. Specific and individualized assessed need for which the modification is required.
    2. Less restrictive interventions and supports attempted without success prior to imposing any modifications.
    3. 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.
    4. Schedule of periodic reviews of data as outlined in DD.21.006 Information Bulletin: Behavior Intervention And Treatment Implementation And Billing for a rights restriction.
    5. Assurance that interventions and supports pose no harm to the individual.
    6. Informed consent of the individual and the individual's guardian, if applicable.
  2. 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 access to food at any time.

Responsibility of the Independent Service Coordination (ISC) Agency:

  1. The Independent Service Coordination agency (ISC) 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.

Complaints:

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.

Contact:

Please email comments on this DRAFT Information Bulletin to DHS.DDDComments@illinois.gov. Include the title of the DRAFT IB in the subject line.

Effective Date:

This bulletin is effective upon posting as final.