HCBS Rules in Settings Serving Individuals with Dementia

Members | January 22, 2017 | by Peter Notarstefano

The Centers for Medicare & Medicaid Services (CMS) addressed the topic of  "Implementing the HCBS Rules in Settings Serving Individuals with Dementia & Other Cognitive Disabilities" in its monthly State Operations and Technical Assistance (SOTA) webinars for State Medicaid Agency personnel and the public. 

The Centers for Medicare & Medicaid Services (CMS) in their monthly State Operations and Technical Assistance (SOTA) webinars for State Medicaid Agency personnel and the public addressed the topic of  "Implementing the HCBS Rules in Settings Serving Individuals with Dementia & Other Cognitive Disabilities." This issue has been challenging for many state Medicaid officials, as well as Adult Day and Assisted Living providers that serve individuals with dementia receiving these Medicaid waiver services. 

Ralph Loller, director, Division of Long-Term Services and Supports at CMS said that the person-centered plan of care is one of the most important components of the HCBS settings rule. He said the person-centered plans of care needs to:

  • Identify the individual’s strengths, preferences, needs (clinical and support), and desired outcomes.
  • Include individually identified goals and preferences related to relationships, community participation, employment, income and savings, healthcare and wellness, education and others. 

For individuals with dementia, it is important for providers and the persons developing the service plan to know the personal history of the individual with wandering/exit-seeking behavior, and try approaches to address wandering/exit-seeking that respond to the person’s unique circumstances and needs. 

Jane Tilly, senior policy advisor, Aging Center for Policy and Evaluation, Administration for Community Living (ACL) discussed strategies & promising practices for supporting individuals who wander/exit-seek unsafely in HCBS Settings. She said that wandering can be helpful or dangerous, depending on the situation. It is important for providers to know why individuals with dementia may wander, not only for safety, but to understand the needs and wants of the individual. 

People may wander in response to: 

  • An unmet basic need like human contact, hunger, or thirst. 
  • Boredom or a noisy, confusing environment. 
  • Some type of distress, like pain or the need to use the toilet.  

Ms. Tilly stated that the individual's service plan goals need to address wandering/exit-seeking behavior in order to: 

  • Encourage, support, and maintain a person’s mobility and choice, enabling him or her to move about safely and independently. 
  • Ensure that causes of wandering/exit-seeking are assessed and managed, with particular attention to unmet needs. 
  • Prevent unsafe wandering/exit-seeking.

She gave some important practice recommendations for providers to use: 

  • Prevent under-stimulation by offering activities that engage interest. Activities could include music, art, physical exercise, mental stimulation, therapeutic touch, pets, or gardening. 
  • Provide a safe, uncluttered path for people to wander that has points of interest and places to rest. 
  • Use technological solutions as part of a person-centered service plan to alert others so that they can reduce the risks of wandering/exit-seeking.

Doug Pace, director, Alzheimer’s & Dementia Care, Alzheimer’s Association focused on assisted living settings and residents with a diagnosis of Alzheimer’s disease or other dementias. He said that 40% of residents in residential care communities have a diagnosis of Alzheimer’s disease or other dementias, and 6 in 10 people with Alzheimer’s disease will engage in “wandering” behavior at some point over the course of the disease.

Mr. Pace stated that the Center for Excellence in Assisted Living, that includes LeadingAge and the Alzheimer's Association as members, reached out to their members and found that even the most effective and dedicated programs for providing person-centered care for people living with dementia noted that they employ ways to secure egress from the building to address safety concerns, but they stressed that secured egress alone is not an adequate response to exit seeking behaviors. 

He said that good communications and person-centered planning and service delivery can mitigate behavioral expressions of need or distress that are often misunderstood and labeled as abnormal or anti-social, including unsafe exit seeking, but safety concerns may require some form of secured egress from buildings. 

During the question/answer section of the webinar, Ralph Loller stated that CMS does not want to see an across the board policy of a locked environment that does not include a process where the residents/participants who do not require a locked environment have the opportunity to walk outside the program. He stated that having a keypad that opens the door, and giving residents/participants who can safely walk out of the program the code to the keypad is one appropriate approach to ensure choice. 

There are many approaches to address this issue, and states need to work with adult day service and assisted living providers, as well as the Medicaid beneficiaries receiving the services to be compliant with the HCBS settings rule.

It was also noted that there has to be an ongoing collaboration between the provider who writes their person-centered plan of care, and the individual designated by the state to write the service plan. Mr. Loller stated that CMS will be releasing guidance on Implementing the HCBS Rules in Settings Serving Individuals with Dementia & Other Cognitive Disabilities, and plan to schedule another webinar on this topic.