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 freedom and support to control their own schedules and activities. 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 freedom and support to control their own schedules and activities.
Details of the specific requirements may be reviewed at 42 CFR 441.301(c)(4)(vi)(C).
Individuals have the freedom and support to control their own schedules and activities
Policy:
Right to Freedom and Support to Control Schedule and Activities:
Individuals have the freedom and support to control their own schedules and activities in their homes or at a CDS site unless there is an identified and documented health or safety concern. In such cases, the 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. An individual's inability due to their disability to clearly articulate their desires regarding scheduling or activities does not constitute a reason for a modification. In this case, the provider and ISC must attempt to discover the individual's wants through any means necessary to determine the individual's desires. See the Modification of the Right to Have Freedom and Support to Control Their Own Schedules and Activities section below.
No provider may have a policy or practice that prohibits the right of an individual to control their own schedule and activities.
Freedom and Support to Control Schedule and Activities 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 freedom and support to control their schedules and activities while at home. This includes such things as when to get up in the morning and when to go to bed, when to eat, and what to do with leisure time in the evenings and on the weekends. For purposes of this Settings Rule expectation, freedom to control their schedule and activities relates to choices while support to control their schedule and activities relates to assisting individuals to make and then realize their choices.
- In situations where individual choices conflict with daily routine, it is the provider's responsibility to assist the individual in understanding the consequence of their choices and, potentially, make a different choice. For instance, an individual might indicate that they want to sleep each morning until 9:00 am, but work/CDS starts at 8:30. In such a case, the provider should work with the individual to understand that if they sleep until 9:00, they will miss work/CDS for those days that they choose to sleep in which could impact their ability to keep the job or would impact their ability to spend time with friends at CDS.
Freedom and Support to Control Schedules and Activities at Community Day Services (CDS):
- Individuals attending a waiver funded CDS must be afforded the freedom and support to control schedules and activities. This includes such things as when to eat lunch or a snack and which activities offered by the CDS to engage in at any particular time.
- This expectation should not be interpreted to mean that individuals can control a CDS' hours of operation. As a business, that right still falls to the CDS provider. This expectation refers to what activities the individual chooses to engage in within the hours of operation and when to engage in them.
Modification of the Right to Freedom and Support to Control Schedules and Activities Requirement:
- Modifications are considered a deviation from the individual's right to be free to control their schedules and activities and to be supported in those efforts. 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 DD.21.006 Information Bulletin: Behavior Intervention And Treatment Implementation And Billing for a rights restriction.
- Assurance that 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 in controlling their own schedules and activities.
Responsibility of the Independent Service Coordination (ISC) Agency:
- 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. Please include the title of the DRAFT IB in the subject line of the email.
Effective Date:
This bulletin is effective upon posting as final.
