DRAFT - HCBS Settings Rule: Modifications

Illinois Department of Human Services 

Division of Developmental Disabilities 

Information Bulletin

DD.25.XXX

Purpose:

This Information Bulletin (IB) describes requirements providers must follow when implementing restrictions to rights outlined within 42 CFR 441.301(c)(4)(vi)(A) through (D) of the Home and Community-Based Supports (HCBS) Settings rule. This includes individuals receiving services in all intermittent, Host Family, and 24 Community Integrated Living Arrangements (CILA) (both individually and provider owned/controlled), Community Day Service programs (CDS), Child Group Homes (CGH) 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 to individuals receiving services funded by an HCBS waiver. When rights outlined in 42 CFR 441.301(c)(4)(vi)(A) through (D) are restricted, CMS requires that a modification be put into place in an individual's Personal Plan. Provider owned or controlled settings may not implement restrictions for HCBS Settings requirements outlined within 42 CFR 441.301(c)(4)(i) through (v) or 42 CFR 441.301(c)(4)(vi)(E).

Details of the HCBS Settings Rule requirements may be reviewed at 42 CFR §441.301(c)(4)(i-vi) and include:

Any modification of the additional conditions, under §441.301(c)(4)(vi)(A) through (D), must be supported by a specific assessed need and justified in the person-centered service plan. The following requirements must be documented in the person-centered service plan.

  • a) Identify a specific and individualized assessed need.
  • b) Document the positive interventions and supports used prior to any modifications to the person-centered service plan.
  • c) Document less intrusive methods of meeting the need that have been tried and did not work.
  • d) Include a clear description of the condition that is directly proportionate to the specific assessed need.
  • e) Include regular collection and review of data to measure the ongoing effectiveness of the modification.
  • f) Include established time limits for periodic reviews to determine if the modification is still necessary or can be terminated.
  • g) Include the informed consent of the individual.
  • h) Include an assurance that interventions and supports will cause no harm to the individual.

Policy:

Need For and Use of Modifications:

Under the HCBS Settings Rule, people have clear rights in provider-owned or controlled residential settings, including:

  • 42 CFR 441.301(c)(4)(vi)(A) - The unit or dwelling is a specific physical place that can be owned, rented, or occupied under a legally enforceable agreement by the individual receiving services, and the individual has, at a minimum, the same responsibilities and protections from eviction that tenants have under the landlord/tenant law of the State, county, city, or other designated entity. For settings in which landlord tenant laws do not apply, the State must ensure that a lease, residency agreement or other form of written agreement will be in place for each HCBS participant, and that the document provides protections that address eviction processes and appeals comparable to those provided under the jurisdiction's landlord tenant law;
  • 42 CFR 441.301(c)(4)(vi)(B) - Each individual has privacy in their sleeping or living unit:
    • Units have entrance doors lockable by the individual, with only appropriate staff having keys to doors.
    • Individuals sharing units have a choice of roommates in that setting.
    • Individuals have the freedom to furnish and decorate their sleeping or living units within the lease or other agreement;
  • 42 CFR 441.301(c)(4)(vi)(C) - Individuals have the freedom and support to control their own schedules and activities, and have access to food at any time;
  • and 42 CFR 441.301(c)(4)(vi)(D) - Individuals are able to have visitors of their choosing at any time.

Providers should approach implementation of the settings rule with the understanding that everyone, regardless of level of disability, starts with all rights in place, and rights outlined within 42 CFR 441.301(c)(4)(vi)(A) through (D) are only limited if an assessed need is identified within the Personal Plan. The Settings Rule outlines steps that must be taken when the need for a modification (rights restriction) exists, including revisiting modifications to assure people are not limited permanently where possible. This modification process is critical to fulfilling the goals of autonomy and independence for people receiving waiver services reflected in the HCBS settings rule.

In all cases, the need to restrict a right outlined within 42 CFR 441.301(c)(4)(vi)(A) through (D) of the settings rule begins with an assessment of a specific, individualized need that results in a health or safety concern. 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 below in this bulletin.

These modifications are individualized and cannot be implemented universally for all individuals residing in the setting. Specifically, if a modification is implemented for one individual, the other individuals must be able to circumvent the modification. For example, if a modification exists for access to food and a lock is placed on the pantry door, the other individuals in the setting that do not need a modification should be taught and/or have keys to open the pantry door and have access to food at any time.

Implementation of modifications:

As stated above, all individuals are guaranteed the listed rights unless an individually assessed need calls for a restriction to be put in place. Any deviation from the rights laid out in 42 CFR 441.301(c)(4)(vi)(A) through (D) of the Settings Rule requires that a modification be developed and documented in the Personal Plan and Implementation Strategy. Equally important to the thoughtful development of a modification is the requirement that the modification be revisited at least annually, but preferably more frequently, to determine if it is still necessary or if a lesser restriction is now possible. It is important to remember that the intent of the Settings Rule is to foster increased independence. Even the smallest reduction in a modification supports that intent and moves the individual along a path toward greater independence and autonomy.

Specific Situations:

In addition to modification requirements for restrictions to the rights listed above, there are some specific situations that may or may not require a modification.

  1. Court-appointed guardian. This does not require a modification.
  2. 24-hour supervision. As a general rule, the fact that someone is receiving 24-hour supervision does not require a modification. However, if someone currently receiving 24-hour supervision indicates a desire for privacy or alone time in the house, for instance, and the Personal Plan does not support this, a modification would be required until such time that an assessment indicates the individual can begin having alone time. This modification represents the restriction of an individual's right to privacy in their sleeping or living unit.
  3. Locked medications. Medication that is locked up is a rights restriction and requires a modification to the individual's Personal Plan as locked medications represent a limitation of one's individual autonomy. Medications are only locked when an individual is not able to administer their own medications. The path to independence (and the removal of the modification) is to assist an individual to learn to self-medicate. Rule 116 is currently under review to bring it in line with the Settings Rule.
  4. Representative payee. A rep payee is not considered a modification generally. However, if there is a rep payee in place for an individual, the details of a representative payee arrangement must be based on an individualized assessment of skills and preferences and documented in the individual's person-centered plan. Specifically, the plan must document any request for the provider to control the individual's funds, the reason for the request, and the parties' agreement on how the provider should handle the funds, including the SSA's requirement for representative payee. In addition, the individual's person-centered plan and/or Residency Agreement must document that choice was offered regarding representative payee including the option to be their own representative payee or selecting their guardian to be representative payee.

Modification Process:

Modifications are considered a deviation from any of the rights afforded to individuals by the Settings Rule. 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. Please note: In situations where a restriction is long-standing and/or precedes the current provider such that the history of less restrictive interventions and supports is unknown, the expectation is that the provider and ISC will revisit less restrictive interventions and supports to ensure the individual's independence is maximized.
  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.

The prospective, or current provider agency, is responsible for providing items 1-6 above and documenting these items in the Implementation Strategy. 

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.