December 25, 2014

 

 

Thomas Spellman

210 N 2nd St

Delavan  WI  53115

 


Division of Long Term Care
Attn: Statewide Transition Plan
1 West Wilson St, Room 518
PO Box 7851
Madison WI 53707-7851

 

 

Dear Folks,

 

Morning Thoughts and Yesterdays Morning thoughts remembered and finally Christmas morning running out of time to finish but the cat has made his appearance.

 

An analysis of and comments on “Wisconsin Department of Health Services Statewide Transition Plan for Compliance with Medicaid Home and Community-Based Setting Requirements ……”, as of November 26, 2014.  For purposes of simplicity I will call this the Transition Plan or TP for short.

 

A week before Christmas - Sort of like a RECALL ELECTION just 3 days before Christmas (I was an elected official in Lake Geneva WI and I had a recall election on December 22 ah democracy)

 

I at least understand WHY I am writing this at 4:00 am.  It is an affliction.  A friend of my beloved once pointed out that she knew no one who was as analytical as I am. I am dealing with the utter insanity of these two agencies that literally make no sense. Ie WORDS MUST HAVE MEANING.  It is generally assumed that any word, in a statement that has meaning, must be able to be replaced with another word of phrase that maintains the OVERALL MEANING of the statement. This is basic logic, is it not? I challenge anyone to fine the words that substitute for the highlighted words below.

 

Yes WHAT ARE THEY TRYING TO SAY in the TRANISITION PLAN (TP)?

 

The TP is a plan to determine if “place X” (a building which contains rooms where people SLEEP and eat some or most of their meals and spend the time in between those two human activities, when they are not at work or doing other activities outside the building) is in COMPLIANCE with a SET OF STANDARDS set by CMS.

 

The paragraph at the bottom of page 1 (see attached) makes clear that “place X’s” are physical buildings where people who are eligible for and receive benefits from HCBS (CMS) live (as described above) because the second sentence of that paragraph reads “It is anticipated that the process for evaluation of non-residential settings will be substantially similar to the process for residential settings.”  It is important to know what we are talking about and what we are not talking about. We are not talking about the work space for those who can work and using the broad definition of work that includes smiling and giggling as work. We are also not talking about the place where other services such as Doctor’s appointments and Dentist and therapist work etc.

 

The section immediately, proceeding this relatively clear paragraph does not provide such clarity. It states that “Wisconsin will use a multi-phase process to assess compliance with HCBS settings requirements”. 

 

I have been reading and talking and searching for the meaning of the following statement “with HCBS settings requirements” for the past 4 months without success. 

 

In order to have a “multi-phase process” (something that can be defined) to “assess compliance” (clear in and of itself) WE have to KNOW WHAT the STANDARD or REQUIREMENT or OBJECTIVE IS and in this case WE HAVE to KNOW WHAT the “HCBS settings requirements” ARE and/or MEAN for it to be understood much less useful.  WHAT IS CLEAR is that there is NO MEANING to “HCBS settings requirements.

 

Since “HCBS setting requirements” is the foundation of this document the clearer more defined that STANDARD or REQUIREMENT or OBJECTIVE IS the less arbitrary the interpretation (power) of that AUTHORITY will be and the easier it will be for ALL of us who DEPEND on these “HCBS settings requirements” for OUR VERY LIVES, to literally live our lives to the fullest. We are not dealing with a regulations that may have simple a “work around” or that make no difference with the LIVES IT IS DIRECTLY CONTROLLING!  This statement is the CONTROLLING regulation that impacts and controls tens of thousands of lives and for it NOT TO BE CLEAR is a disservice of untold proportion!!  

 

A small diversion to discuss if people who are participating in HCBS programs are clients of the State or some other organization OR are they free individuals WHO qualify for a Federal benefits the Government provides through one of its many benefit programs that help and aid its Citizens?. This program is NO DIFFERENT FROM many other Federal Government programs such as Earned Income Credit for low income persons and Pell Grants for some College Students and in some States free Tuition.  Some very rich farmer are eligible for crop subsidies and remember that WALL STREET was eligible for a BAIL OUT and continues to be eligible for untold sums of money!! Yes even the SUPER RICH the riches one tenth of one percent of the population are eligible for Federal benefits!!  Sorry for this diversion but it is critical to see and to know that this is a BENEFIT that we are talking about NOT SOME HAND OUT as is often described as. 

 

The Assessment of Compliance paragraph, DOES NOT include the specifics that if include, would aid ALL of us in KNOWING and understanding what we are to do. Ie there is not discussion of the KNOWN break points as I describe then that are perfectly obvious to ANYONE who thinks about much less studies the implementation of any regulations that directly affect the developmental disabled.

 

  BREAK POINTS  -  a human activity where the world’s options for an individual changes dramatically. For most of us it is money. Lots of money - expensive cars and stuff and vacations etc., little to no money sleeping and eating at a “rescue mission” at best or dumpster diving for food and sleeping on the street at the worst.

 

Each break point is a YES or NO answer and yes there will be a gray area and over time an individual my move from one side to the other as well

 

  1. The ability to safely live alone

  2. The ability to make and keep an appointment

  3. The ability to leave ones “home” at any time of the day or night

  4. The ability to cook for themselves

  5. The ability to take care of their physical body

  6. The line between little to no brain impairment and mild brain impairment

  7. The line between moderate brain impairment and sever brain impairment

  8. I am sure there are other break points as well

     

    If an individual has the mental capacity to DO the activity described in the break point their WORLD may/will be different from those individual who can NOT do that activity. All of the regulations that are currently being discussed TOTALLY IGNORE these BREAK POINTS and in fact ASSUME THAT ALL INDIVIDUAL HAVE LITTLE TO NO BRAIN IMPAIRMENT!!!  By ignoring this most basic break points they do a disservice to ALL those who do not fit the primary group that the “HCBS settings requirements                               seem to be addressing ie those who have little to no brain impairment. INSISTING that brain impairment does not exist and/or implying that IT CAN BE FIXED truly makes me angry!!!!   I only WISH THAT ROSA COULD WALK DOWN TOWN BY HERSELF to shop. I have had a number of conversations with advocates who refuse to accept the break-points and end the conversation with we will just have to “agree to disagree”.  

     

    And again and again and again IT IS ALL ABOUT WHAT IS POSSIBLE FOR ANY INDIVIDUAL.  ALL OF THESE REGUALTION while mentioning person-centered planning TOTALLY IGNORE the basics, that the planning process will SPECIFICALLY prescribe for many individuals, the environment that is REQUIRED FOR THAT PERSON TO BE SUCCESSUFL ie  Rosa Miriam Palmer Spellman  NEEDS A workshop where she can work at HER own pace, doing jobs that SHE can do, and having a variety of jobs so SHE does not become bored with work etc etc etc. For all of us it is a continuum and where we are on the continuum is our fate our reality.

     

     

    On the last paragraph on page 3 it states “and interviews with people residing in the setting being assessed” NOW WHY WOULD someone use “setting” when here it means a place where a person “resides”? A better term to use where a person sleeps and eats would be a dwelling unit in it broadest usage BUT WHY WOULD SETTING BE USED???

     

    WHAT IMAGE comes to mind with the word “SETTING” (Frame as George Lakoff would describe it)? What do any of us see when we hear or read the word “SETTING”? Below is a list of Dwelling Unit Types that are more specific and useful to consider and again all of these need to be seen for the Person Centered Planning process and from the breaking points listed above. What is the best place for Rosa or any of the others to live in.

     

  1. An APARTMENT that is shared with a number of people and how is the refrigerator and the dishes dealt with organizational and who takes out the garbage??

  2. An APARTMENT called either a SRO single room occupancy or an EFFICIENCY apartment that have very compact kitchens inside the room itself.

  3. 1 and 2 above are generally in buildings containing from 2 units to 20 + units Yes complexes can have hundreds. It should be noted that tens of thousands of individuals with disabilities, WHO CAN safely live by themselves, live in apartment buildings and some live in their own homes as well. Note: Where individuals live is often a factor of how “rich” they are.

  4. A ROOMING HOUSE where there is a kitchen for common use and usually strict rules about doing the dishes. Some rooming houses provide meals which is called Boarding House and those who live in their room pay Room and Board.

  5. A DORM where the sleeping area and usually shared and is small and the common area living area is further away from the sleeping room often shared private space

  6. Assisted living where an individual will have one of the living spaces above with the addition of have someone available for help and monitoring if necessary

     

    It surely seems that using a definition as above for SETTING (if this is what is meant by “settings”) will surely make all of the discussion COMPREHENSIBLE TO ALL OF US

     

    A second reading and attempt to comprehend what is being said.

     

    Jargon. This is a PUBLIC DOCUMENT put out to the PUBLIC for PUBLIC comment and it is not understandable by the PUBLIC. Yes that is jargon.  I am sure that the professional community at least has a clue about what is being said but I still do not.

     

     

     

    NOTE:  Where these rules could be particularly useful would be in getting most individuals into their own room or at least in their own PRIVATE space (a door to a slightly larger room with a petition separating the two spaces or even three or four spaces with a small shared sitting area) This would in the final analysis not be that expensive. And then again two friends sharing a space can be special as well. Two buddies……….. All of this is controlled by the Person Centered Planning Process ie the Planning process that each of us use daily as we go through our lives.

     

    Sorry there were more specific comments on the TP but there is NO TIME

     

     

    Peace 

     

     

     

    Thomas Spellman

 

 

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