Conversation with Ralph Lollar - CMS

Comments of Molly Nocon, CEO

Monday, March 14, 2016

Subject: Addressing the need to accommodate delayed egress via IPPs

Noah Homes, a specialty intellectual disability provider organization in the San Diego, California area conferred with the San Diego Regional Center in 2012 and asked if there were plans in place to take care of the aging population of adults with intellectual and developmental disabilities (I/DD) in greater San Diego, specifically, and in California generally? Noah Homes had just experienced the transfer of a resident to a nursing home (with a staffing ratio of 15:1, while she came from a home of 3.5:1) due to being diagnosed with advanced dementia of the Alzheimer’s type. The reply was “no” and we at Noah Homes were asked if we had any suggestions. Our reply was we did and suggested that we needed to develop a program model for the growing number of adults with I/DD now showing signs of progressive dementia. However, we raised the concern that these plans might not conform with the proposed CMS community care regulations coming out of Washington. Conversations with the Regional Center continued and it was suggested that we speak with California’s Department of Developmental Services (CA DDS) in Sacramento. A meeting was set up about six months later, and we were told the same thing; “No, there are no plans in place – we did not expect them to live this long.”

This comment persisted everywhere I went for the next year. One of our consultants, Dr. Mike Rafii, at the University of California – San Diego, then pointed me to the National Task Group, and the revelation became clear; this is the same conversation going on across the United States. After a period of strategic planning at Noah Homes, and our Board’s commitment for a capital campaign to build some specialized dementia care homes, I went back to CA DDS with a draft plan, and was told: “This is a good time to build these homes as they are needed, but we can’t tell you whether they will be in compliance. At this point, we can only tell you that all vendors in California are out of compliance as CMS has not agreed to any state plan.”

At this point the Noah Homes’ Board made the decision to move forward as the need for specialty dementia care within our existing group homes was growing exponentially. We started our capital campaign and organized plans for the building of two dementia care group homes. I made another appointment with CA DDS and was reassured that we had a green light to move forward and, further, that they were eager to see how we progressed. The only unanswered question was our ability to keep residents with dementia safe from wandering. We decided that our homes needed a secured perimeter (prevalent in many community care dementia care programs available for adults in the general population who are diagnosed with mid-to late stage dementia). The problem we encountered was the question as to whether having a secured perimeter might be in conflict the provisions of the new CMS guidelines – that is, impeding free access for those adults who did not need "restrictive constraints" to meet health and safety concerns. That is, whatever was set up to prevent wandering for the one or two residents who were prone to wandering could not prevent egress by others who wanted to exit and were not wanderers. To our disadvantage was the fact that until now a ‘delayed egress’ for other high-need adults with I/DD individuals in California had been denied across the board. Given this, we were advised to seek counsel directly from CMS. On March 3, 2016, I had the pleasure of meeting with Erin Long at the Administration for Community Living in the Department of Health and Human Services in Washington, DC. During my visit with her to discuss the Memory Care Homes, which we are currently constructing at Noah Homes, we conferred about the concern to balance specialty dementia care and incurring risk of injuries due to wandering. Erin suggested I speak with Ralph Lollar, Director of the Division of Long Term Services and Supports, within the Disabled and Elderly Health Programs Group, at CMS.

On Monday March 14, 2016, I had the opportunity to talk with Ralph Lollar at CMS. These are some of the insights that Director Lollar shared with me during our 25-minute conversation.

There have already been conversations with a number of stakeholders with regard to the aging population in the disability field. While there is no specific reference to this group in the new guidelines, "it is ultimately up to the states to make final determinations on the design and programming of any supports in this community."

Director Lollar did not feel that an exception was a direction he would pursue at this point, as the states have the discretion to make the necessary adjustments in the program guidelines. He was very adamant that any particular "exceptions" regarding aging would be honored by CMS if there were detailed descriptors in the IPPs [individual program plans], and that means to address others who were living in the same home who did not need "restrictive constraints" to meet health and safety concerns, were also laid out in the IPPs. His main concerns centered around (a) lack of access to the community, and (b) excessive constraints that would unduly affect others in the home who were not subject to the same issues.

We had a discussion about ‘delayed egress’, and again he said that was "acceptable in this population" and stressed the need for detailed description of program needs in the IPP, and the fact that others in the home not under such restrictions would have the ability or help with access to enter and leave at will with a key or code. He specifically mentioned a 30-second delay as acceptable.

Director Lollar specifically mentioned that he would not consider a "shared patio as community integration." Not sure where that came from, but it must have been pitched as an idea by some other agency/individual.

He recounted that he had done casework for five years, as well as direct care, and was well aware of the aging issues, and of the additional work load to staff caused by aging issues. He reaffirmed that the states have the ultimate say, and that accommodations for extraordinary circumstances should be well outlined in each adult’s IPP.

Director Lollar stated that the current CMS regulations had been vetted by exhaustive community input for more than eight years and at this time he was bound to honor and work within the regulations.

I thanked him for his time, and for the clarification on the ‘delayed egress’, and said that I would be sharing this conversation with CA DDS and my local Regional Center. I also said that I would keep him informed of our progress in developing these first of their kind homes in California. He congratulated me on our efforts and wished us success.

We are sharing this so that we could all be on the same page in any conversations with CMS. I don't know that it accomplished a lot, but I have now heard from my meeting in Washington and with my recent conversation with California’s Health and Human Services’ Secretary Diana Dooley at an Alzheimer's Task Force meeting that Director Lollar is the ‘gate keeper’ of the CMS regulations, and is not in position to change or modify them. I would agree, but the conversation did convey that he has an understanding of the special circumstances that agencies like Noah Homes are facing and kept directing me back to "detailed descriptions in the clients’ IPPs." The implications of what he recommended are profound; he has provided a workable interpretation of how to address what might be considered constraints in providing community-based group home dementia care – by applying clinical judgment and carefully crafting a program plan that recognizes the contributions of progressively impaired mental status due to dementia, yet at the same time provides a means to deliver care within a community care setting, no matter how advanced is the debilitation attributable to dementia.

I took away from the conversation that special circumstances need to be specific to individual needs, and also that any program addressing such a need must also have accommodations for those in the same home who may not need the higher level of confinement or lack of direct access to the community.

I hope this has been of some help, and let me know if you have any questions or concerns.

Thank you all for your help.

Noah Homes

Providing Residential Care for People with Developmental Disabilities

12526 Campo Road, Spring Valley, CA 91978 ● Tele: 1 619-660-6200