The Domain of Wellbeing AUTONOMY in CMS Regulations
The Eden Alternative developed what are called the seven Domains of Well-being®.
CMS actually included the Eden Domains of Well-being in the “new” (2016) regulations.
And, of all places, at the Activities tag!
To ensure that facilities implement an ongoing resident centered activities program that incorporates the resident’s interests, hobbies and cultural preferences which is integral to maintaining and/or improving a resident’s physical, mental, and psychosocial well-being and independence. To create opportunities for each resident to have a meaningful life by supporting his/her domains of well-being – security, autonomy, growth, connectedness, identity, joy and meaning.
In this article, we’ll look at Autonomy by analyzing the Eden Alternative’s definition:
Liberty; self-governance; self-determination; immunity from the arbitrary exercise of authority; choice; freedom
Living in an institution, nursing home or assisted living, is notorious for lack of choice, sadly. Focusing on liberty, or lack of liberty, is a very strong way to put it, isn’t it? Lack of liberty seems un-American, doesn’t it?
Forgive me for taking a hard look at what is most common, lack of liberty, and I invite you to do whatever you can to liberalize it. Particularly in your wheelhouse, your area of expertise and authority; where you have power to make change.
Self-governance, what a great way to say it, right? Independence is used often. Self-directed living, we call it in the culture change movement. If we’re honest, it is something we all want our whole life no matter where we live. Notice the strength in this language, it is stronger than person-centered. Person-centered is well intended and certainly stronger than not person centered but in the culture change movement we had already moved on to person-directed even before CMS came out with person-centered care and person-centered care planning in the 2016 regulations.
Additionally, we focus on living more than care. I challenge you and invite you to join us. Try to talk about the life people are living who live where you only work… it is powerful.
Care is part of life and when care is the only focal point, life gets ignored. And we out of all the various long term care professionals, need to – how about get to – focus on life and living!
Community Life replaces Activities/Recreation
Many changed culture homes use community life instead of activities. Instead of the activities or recreation department, they are the community life team. Instead of activity/recreation director, community life coordinator. Instead of activity calendar, it becomes the community calendar. I think these words do more justice in describing what we really do and offer. For instance, we don’t really direct people to do things but we certainly coordinate the doing of things….
This term is exactly what CMS uses for the section of federal requirements regarding residents’ rights to make choice…
CMS Tag F550 Self-determination
Right to choose activities, schedules (including sleeping and waking times), health care and providers of health care services consistent with his or her interests, assessments, plan of care and other applicable provisions of this part.
Right to make choices about aspects of his or her life in the facility that are significant to the resident.
In our field I think we easily glide over the right to choose activities because we know that, and we don’t force people to go to things, at least I hope not as that is a much bigger problem if so. Just think it through, if we force someone to go to something they don’t want to go to that could fall under a form of abuse… hard word but where it lands. Is also lack of choice and lack of liberty again…
But where we can grow perhaps in our work right here is in giving choice of schedule. We are famous for a schedule, aren’t we? And, of course, a calendar of events is planned however, therein is the challenge.
I once realized looking back on my career as an activity director, “what if those who lived where I worked wanted to sing hymns on a different day than Thursdays at 2 pm?” Oh my, I never even thought of it back then.
Immunity from the arbitrary exercise of authority
This is the strongest point. Isn’t it extremely sad and disappointing that the long term care culture even in 2022 still puts arbitrary exercise of authority over the people who actually live there?!
The arbitrary exercise of authority – wow – think about what that means. Someone else decides for you. And it doesn’t matter what you think. For instance, you are woken on the institution’s schedule, not your own and whether you had a good night of sleep or not or want to be woken or not. You are taken to a breakfast at a time that was arbitrarily set by someone who probably doesn’t live there and most likely many years ago. You are taken to things all day long and rarely asked if you want to go or if you are hungry.
What can be done
Build in more choices. Every single team member in your community can be taught to build choice into every interaction from simple to more complicated.
Simple: Would you like to sit here or there? Wear this or that?
More complicated: Where would you like to set? What would you like to wear?
Challenge yourself and team to build in more choices
Yes, you have many group activities for people to chose from, what can you do to create more choice beyond that given situation? Could you ever offer two events at the same time and build in choice that way? Wow.
Community Service Projects build in Choice
I also find that having many community service projects going on also builds in choice.
“Mrs. Jones, would you like to join us for Jazzercise?”
“Oh no I can’t, they are coming at 5 pm to pick up the letters to the soldiers and I have to keep writing until they come.”
Ask Residents their Goals
Did you know that in the “new” 2016 CMS regulations, the term “resident’s goals” is found 153 times! So, consider this great move, move toward asking residents what their goals are. Yes, for each section of their care plan. Don’t forget that some people tell you things about themselves without words, i.e., spitting out green beans just told us the person probably doesn’t like them. Their life. Their care plan. Their goals. CMS has moved in this direction finally and it makes sense. If you haven’t, enjoy doing it. There is power in asking a person their goals. I also recommend quoting the person “I want to stay in my room, watch my shows and leave me alone.” See the power in quoting them? No one can disagree with it, not a family member, not a surveyor and another beautiful practice giving people their life back, freedom, liberty, self-determination, choice, autonomy.
Focus on Interests
This CMS regulation also tells us to focus on … interests, not problems and not whether one comes to group activities or not. Focusing on interests is the very best thing you can do and it is required of us to do. Don’t let the focus be whether one comes out of their room or attends groups. Don’t let this happen…”Resident reluctant to come out of room.” That is not the person’s interests, that is not the focus. We must move away from this institutional mindset. When you truly focus on individuals’ interests, there will be natural involvement, we don’t need to make coming out of the room the priority nor are we supposed to.
Freedom is listed last in the definition of autonomy, what can be added to that? Freedom from the lack of choice, from others deciding for them that arbitrary exercise of authority no one wants. Please do whatever you can to give the gift of freedom. I’ve heard it said we are AmeriCANS. We CAN. You CAN. And we thank you for it.
If you want to learn more about the seven domains of wellbeing see past articles, Eden’s white paper at edenalt.org, and Dr. Allen Power’s book Dementia beyond Disease: Enhancing Wellbeing – each chapter is dedicated to each of the seven domains.
Carmen Bowman, MHS, Regulator turned Educator of Edu-Catering: Catering Education for Compliance and Culture Change, seeks to inspire everyone to chip away at institutional culture by laying a strong foundation of knowing regulatory requirements – blending innovation with regulation. Activity consulting, personalized continuing education and live instruction also available. “Cutting edge-ucation” nominal pay-per-view training and free sample videos at www.patreon.com/educatering, email@example.com 303-981-7228 www.edu-catering.com The Culture Change Minute for free www.facebook.com/Edu-catering