Friday, January 5, 2024

Minimum Data Set: Obsolete & Dangerous

This is a long post. Sometimes I can't stop writing when the subject is so critical for those involved and those responsible for care giving or POA (Power of Attorney). Originally Written Dec 17, 2014.

Grab a liquid to refresh. Find a comfortable chair. A notepad might be good to have. 

ABOVE ALL, NEAR THE END I GIVE AN ONLINE RESOURCE. Please read the content in full. It will give you insight and information from your and your loved one's perspective and is truly important

Looking backwards still hurts in 2023 (almost 2024). 
Living through being torn apart by a dishonest "Church Lady" who purposely and intentionally abused us reporting "I" abused my Mother.

Warning to families trying to live Multi-Gen: 
Just because someone attends your Church, a group you belong to or "seems to be so nice and caring" -- never assume what you "see" is what you "get". 

People take advantage of weakness & inexperience.
Instead of "prayer", Julia, "the Church Lady" saw our family as "prey" trying to destroy three decades of a multigen family.

Caregiving took a different turn. My husband passed. Mom was convinced by "The Abusive Church Lady'" living in a facility was far better than living with me, her daughter, and my daughter, her grand-daughter. 

Mom was in her late Nineties at the time, had Dementia Julia recognized as an RN, we did not.

Mom moved in to live with us in 1971. We lived in the Chicago area at the time, then moved to the Philadelphia area and finally to St Louis, Missouri first to one home and then to another home.

Julia "helped" Mom move into Long Term Care in 2011 and out of the home she'd lived in for decades with our family -- after taking her to the Bank, opening a safety deposit box with HER NAME and Mom's name on it NOT PROVIDING ANY ADULT FAMILY MEMBER WITH THIS INFO.


We didn't know Julia "renewed" an RN license she'd let slip for years -- we didn't even know she'd ever been an RN.

We saw Julia occasionally across our Church during services and she became a Lector, carrying and reading at Mass from the Bible.

No Warning Signs; Trust Established With Familiarity and her participation in a "religious organization" - St Vincent de Paul Society -- my husband also volunteered there and my daughter and also did not see the "hidden Julia".

I took Communion to a Long Term Care Facility and Julia was also a Eucharistic Minister at the same facility. We were not friends and barely aquaintences 

Knew she lived close to the Church; she always came to services by herself; she was a Lector which means she walked in front of the Priest holding the Bible above her head and read from it during the Mass.

Julia "renewed" her RN License; it  had expired many years ago despite the fact she'd "worked" with many Seniors over the years "volunteering" with SVDP (Society of St Vincent de Paul).

FLASHBACK: Early morning. Drove daughter to work. One car, two jobs (actually I sometimes did three -- minimum wage doesn't go very far to try to keep a household intact, put food on the table). We could give up, give in and just "accept" the abuse and life's challenges but that's not who we were or who we are.

My mind is supposed to be focused on getting myself more work and that means a steady job. 

Have PT/Temp work but that makes life a struggle. 
At my age, maybe that’s all I’ll get. 
My achievements, experience and abilities aren't considered.
Ageism is as challenging an “ism” as race and sex.

Instead I head out on the internet to search, research and eventually share with you what I’ve found about Dementia, Care Giving and Long Term Care, what I’ve learned, what we’ve experienced along the treacherous road of growing older.

I may be down, we may be in financial challenges, that's a part of our life but it doesn't need to control and manage all we do.

This Life's Road was not chosen, unexpected and unknown I've decided to be one of the last in the long line of family members totally in the dark about "Residential Care".
For me, it’s become a passion of living.
It helps me cope with the reality beneath the surface of the carefully manicured lawns, the nicely decorated lobbies and the smiles on faces of keepers of the keys of the later years of life.

Knowledge is important and the only way to get it is to dig deep and move the dirt wide, away from what it’s covered for so long in our society – the lives of Seniors in Long Term Care with all the realities and truths about daily life as we’ll have to live it if we don’t see the reality and move to make changes.

What “pops” to mind? The MDS, Minimum Data Set, mandated in all Long Term Care facilities by the 1987 Nursing Home Reform Act. The thought was to ensure the safety and well being of our elderly population but the reality has been to turn our Seniors into Lab Rats and to generate a lot of “Polls”.

We base many decisions for our Senior population on these Data Sets as though they were accurate and applicable when they’re often false, misleading and deceptive. 

Industries have been created around teaching others how to understand the complexities and idiosyncrasies of these measurements of “happiness” and “health” of a Senior’s life in a Skilled Nursing Facility. 

Facilities complain they spend more time filling out forms than they do care giving and to some degree, that’s accurate. Even with today's computer abilities, time is still most precious.

Let’s remove the “chaf” and keep the “wheat” in programs and procedures. 


Minimum Data Set Resident Mood Interview (I kid you not, this is the actual title of a section on the Minimum Data Set required of all 1.6 million residents of Long Term Care Facilities whether paid for by private funds, Medicare or Medicaid)

Years ago, a “mood ring” was popular. It supposedly changed colors according to your “mood”. 

Today, Seniors are subjected to a test at least once every three months where they’re asked to give a value to their “moods”.

Really?  Yes!  And not only give a value, but these men and women, of differing temperaments are supposed to:
(1) determine a specific number of times over a specific amount of time this “mood” was present, and 
(2) determine the frequency within a specific range of occurrence within a specified amount of time.

I challenge you to take the test and see what grade you might get.  And, haven’t parents “taken to arms” to stop this same kind of “lab rat” mentality from invading schools? 

To laugh and not cry about this abusive invasion of privacy, I think about “Mary”. Love her dearly but she almost always has a sour word to say and could easily play the “Negative Nelly” next door in a stageplay. 

And then there’s “John” who loves to trick people into thinking just the opposite; bet he has fun when it comes to these tests!

Here’s the actual verbage on the most recent version of the test word for word. Read it and see how you react.

Patronizing, isn’t it? Insulting to intelligence? Offensive? None of their business (as some of our Seniors might say).

The following is taken word for word from the section as cited on the Minimum Data Set mandatory Federal and State required “test” of our Seniors most recently revised, 2010:

“D0200. Resident Mood Interview (PHQ-9c).  Say to resident: “Over the last 2 weeks, have you been bothered by any of the following problems?

If symptom is present, enter 1 (yes) in column 1, Symptom Presence

If yes in column 1, then ask the resident: “About how often have you been bothered by this?”

NOTE:  NOT, “How often have you …. and then repeated the statement, e.g., had “little interest or pleasure in doing things”  BUT HOW OFTEN HAVE YOU BEEN BOTHERED BY . . .

I wonder how many Seniors who are highly impressionable and perhaps even “lonely” grasp this “hook” as a way to get more conversation, perhaps more attention?

They can have a “little fun” or just “give them what they want to hear" -- as some have told me.

Here's what several have told me they react to this mandated, invasion of their time and capability:

(1) being asked and I need to provide an answer 
(2) I don’t have an idea but I’m being tested and so I need to make one up 
(3) Last time I became angry and she wrote something I didn’t see so this time I’ll just smile and tell her “I don’t remember” or something like that. 

Ever heard a young person or even yourself do this when put in a situation where you’re being asked questions you don’t want to hear, answer or commit to?

LAB RATS IN HUMAN FORM. Questions limited to choosing specific answers. Animals are subjected to conditions and "medications" with no ability to refuse. Humans are often surrounded my multiple people "pressing" conformity and full participation while often told they won't have or get something if they don't "because it's required". 

YES! I'VE SEEN/HEARD this ugly practice. Report it? And it's your word against "theirs", the "professionals", the "certified" or  at least "somewhat trained". Or, you're told it's "required" by The State, The Federal Government Programs -- etc.

Keep in Mind,  any “YES” answer is referred to as a “bother” and probing is now done about “how often”.

The questions become multiple choice:  “Symptom Frequency. 0.Never or 1 day. 1. 2-6 days (several days). 2. 7-11 days (half or more of the days) and 3. 12-14 days (nearly every day).


What are we doing to our Seniors? 
What kind of life are we giving them that we shelve them and then we analyze and probe their minds, their lives and watch them and report on them constantly?

Mom used to complain about all the QUESTIONS.  
Why didn’t they stop asking her who the President was. 
She knew perfectly well who he was. 
Why does one and then another and another keep prodding her for an answer all the time.

To be honest, I just thought Mom was exaggerating. 
Now, I’m not so sure. Our loved ones have been and may be continuing to be "harassed".

Some facilities are holding to that “observation” concept as ongoing and that includes MOOD ASSESSMENT and MENTAL CAPACITY to keep track for that time when the Minimum Data Set will have to be filled out again. 

SYMPTOM.  That’s right. They’re in a “medical facility” so all their feelings, their hopes and dreams are set aside because it’s a medical facility, Long Term Care, and symptoms determine what illness or challenge you have. 

MY PERSONAL INSIGHT.  I recall these “assessments” being given by the resident Social Worker at Mom’s facility.  

Given in plain sight, in plain hearing. Usually she “captured” them as a group around a dining table before or during a meal. 


It was something that had to be done, mandated by law and what difference did it make if these were highly personal questions? Many of them were so medicated or had "mental problems" and it was "convenient" to get them all together.

Less time expended by the Facility meant lower cost but still reported as "individual" assessments because they could.

After all, some of the people sitting around the table wouldn’t know what was going on and if they heard, they’d probably forget? 


Here’s a list of the Questions as they appear on the MDS form:

The advisory to the “questionnaire” is: ).  Say to resident: “Over the last 2 weeks, have you been bothered by any of the following problems?

If symptom is present, enter 1 (yes) in column 1, Symptom Presence

If yes in column 1, then ask the resident: “About how often have you been bothered by this?”

Then, the “interviewer” can go down the list and back and forth to ensure they “capture” the frequency of the answer OR they can elaborate or ask deeper questions – there’s nothing disallowing the interviewer’s own interpretation except for guidelines and we’ve all seen and experienced how facilities already “twist and turn” these.

Here are the questions Seniors in Long Term Cares MUST be given frequently:
·         Little interest or pleasure in doing things?
·         Feeling down, depressed or hopeless?
·         Trouble falling or staying asleep or sleeping too much?
·         Feeling tired or having little energy?
·         Poor appetite or overeating?
·         Feeling bad about yourself—or that you are a failure or have let yourself or your family down?
·         Trouble concentrating on things, such as reading the newspaper or watching television?
·         Moving or speaking so slowly that other people could have noticed. Or the opposite – being fidgety or restless that you have been moving around a lot more than usual.
·         Thoughts that you would be better off dead, or of hurting yourself in some way

NEGATIVES. All statements are phrased negatively. Why?

How many negative "ideas" can be put into your head before you start focusing negatively?  

How would you respond on any given day to those questions? 

Sounds more like probing about MENTAL HEALTH to me in a way that any one of us could respond “yes” and provide a number of times – especially on what we consider to be “bad days” from a myriad of causes both within and without our own control. 

Reading the newspaper?  Really?  What newspaper? One they buy for themselves, perhaps. 

And if the facility has ensured their lost glasses were found or replaced the broken set – or ...on and on.

Who really listens to the reasons behind their “concerns” or “symptoms” as the MDS labels these typical life challenges. 

We all know how unaddressed small challenges become big ones.  

But then, facilities really don't get compensated for "little medical problems" as much as they do for the more well developed, those requiring specific medical procedures covered by Medicare/Medicaid.
Why doesn’t the test measure the real reason for the “symptoms” listed above? 

We might save a lot of tax dollars if we didn’t have tests like this that accomplish little for the people it’s meant to serve – or at least parts of it, how it’s written, how it’s administered and how it’s reviewed.

The Senior is supposed to tell the “interviewer”  the “Symptom Presence” (column given for this notation) and “Symptom Frequency” (column given for this notation).

This entire section focuses on specifying any behaviour in the list as a "symptom" -- of what, why, who and where?

Frequency. It’s all about frequency. In fact, “interviewers” are required to ask the Senior to estimate the frequency OVER THIS TWO WEEK PERIOD (right, for some who can’t even keep track of what day it is without a calendar – like many “regular” or “normal” people, I might add.)

I often asked Mom’s facility what they used to gather their information for our “formal” meetings where they sent a letter and talked about a “regular assessment”. 

The facility always chose the when, where and how and we who had POA’s (Power of Attorneys) were invited – don’t know if we’d been asked if we wanted to attend if we hadn’t had POA’s.
Their response was always vague until I discovered the magic letters MDS – Minimum Data Set. 

Even then, the Floor Head Nurse (an LPN) who always came to these meetings and always was the “leader” of the meetings, sidestepped and danced around the subject with generalities and never specifics and, of course, never a copy of the actual report for us to see or try to understand.

Why are these mandated Federal "tests" kept from those with the legal right to see the information?

Those people could have won the trophy on Dancing with the Stars as much as they sidestepped, swung us around, tipped us backwards, flipped us and sent us moving all around and across the floor making our moves complicated and tiring.

Today, I believe all residents and their selected responsible individuals for our elderly in Long Term Care Facilities should know about this MINIMUM DATA SET TEST and understand how it could very likely be causing more problems than it’s resolving for their loved ones.

Even though this was one of the main tools used by the facility and being used by authorities to determine the course of Mom and all other resident’s daily life (over 1.6 million total residents by statistics provided by the Government on number of residents at any given time in a Long Term Care Facility) we were NOT provided access to or direct information from the Minimum Data Set (MDS) at any time during Mom’s residency – no matter how many times we asked for it or who we asked.


I don’t want just to get a summary of findings for a State which is what is currently available on websites. 

I want reports to be mandated as a part of the conference regarding the care determination for a resident with the resident and with any appointed representative without having to request or know about their existence.


Stop the “puff and fluff” reports given to individuals and families who don’t know what to ask for, what’s available or what would give a better quality of life to their loved one necessitated to live in a Long Term Care Facility.

This MDS report is also supposed to be used to try to move residents back into the community at a higher, less costly level – that’s what the focus of government and our tax dollars has become.

However, in my opinion and observation, when you have a “bird in the bush” in a resident who’s acclimated, why would you want to release it or see it be released and have to “tame” another bird?

Another time we’ll look for statistics on how many residents of Long Term Care Facilities could function in a higher level of care, Independent or Assisted Living, but due to other limitations, especially Medicaid payment, this cannot be an effective choice for many.

The powers that be are the powers that have the ability to do what we stay silent about.  

Originally Written Dec 17, 2014. Many residents and families still report similar actions and procedures as some LTC's "know there's a Form to use but also use their own".

Thank you for reading this long entry. To provide real insight, it's important to me to share details and that takes time and space. Appreciate your understanding.

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