Illinois Department of Human Services
Division of Developmental Disabilities
This Information Bulletin (IB) outlines the requirement that providers will ensure that all individuals receiving the Home and Community Based Services (HCBS) waiver-funded services must be treated with dignity and respect at all times. This includes individuals receiving services in individually controlled Community Integrated Living Arrangements (CILAs), provider owned/controlled CILAs, Child Group Homes, Community Living Facilities, 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 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 be treated with dignity and respect at all times.
Details of the HCBS Settings Rule requirements may be reviewed at 42 CFR §441.301(c)(4)(i-v) and include:
3b) Providers ensure an individual's right to dignity and respect.
Right to Dignity and Respect
Individuals have the right to be treated with dignity and respect at all times. 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 dignity and respect.
For the purposes of the HCBS Setting Rule, treating people with dignity and respect includes acknowledging and following an individual's wishes and preferences. Individuals should be treated in a way that a reasonable person not receiving waiver services would want to be treated. Examples of ways to treat people with dignity and respect include, but are not limited to, not speaking to individuals like they are children, honoring preferred pronouns, supporting age-appropriate activities (i.e., alcohol consumption for individuals who are 21+), not asking individuals to wear a bib while dining unless it is a clothing protector that is age appropriate and chosen by the individual, etc. It is also important to note that in Illinois, the fact that an individual has a guardian does not limit an individual's wishes and preferences in day-to-day situations. Those wishes and preferences must be recognized and honored to the greatest extent possible.
All providers must have a policy affirmatively stating that individuals shall be treated with dignity and respect at all times and staff must be trained on the policy and the underlying concept.
People have the right to dignity and respect in how they are treated in their homes and while receiving services outside their home. This includes how they are spoken to as well as how staff treat them. 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.
Providers must train all staff on the concept of what it means to treat someone with dignity and respect, including through verbal interactions and by staff action.
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.
This Information Bulletin is effective 12/18/2023