April 24, 2015
Rosa Miriam Palmer Spellman
by Thomas Spellman
210 N 2nd St
Delavan WI 53115
Division of Long Term Care
Non-Residential Provider Self-Assessment Tool
PO Box 7851
Madison WI 53707-7851
Good morning all
Response to the DHS Division of Long Term Care Draft Non Residential Provider Self- Assessment
The Self-Assessment is primarily based upon what CMS has ordered as a set of standards that support their “SETTINGS” for Community Integration, CFR 42 Section 441.301 (c) (4) (i) through (v) and 441.301 (c) (4) (vi) (A) through (F). If these rules are not changed Sheltered Workshops will first be forced to contort themselves so that they FIT the CMS rules INSTEAD of PROVIDING THE VERY BEST WORK OPPORTUNITIES for the individuals WHO HAVE CHOSEN TO WORK THERE!!! Then, there is no doubt in my mind, if these rules are NOT CHANGED, “sheltered workshops” will be closed.
There are major issues with these “standards”. One of them is that they ONLY RELATED TO DISABLED INDIVIDUALS with LITTLE OR NO Brain Impairment!!! Rosa Spellman is in fact EXCLUDED by these standards because her disabilities prohibit her from effectively working in “community integrated employment” which as we know is one of the new MANTRAS of CMS and other Federal Agencies.
Let us, as an example, examine question 3
“Do people received services in an area of the setting that is fully integrated with people not receiving services”
Hummm For starters there could be three interpretation of this question.
1) As long as one “area” is fully “integrated” “all is well”?
2) People do not receive services. No definition of “services” is given, “all is well”?
3) There is something GOOD by receiving services with others who are not receiving services. Why are the ones not receiving there to begin with???
It seems on its face to be pretty clear. They are trying to establish that Rosa’s place of employment, a sheltered workshops, is deficient because it is not “fully integrated” (as opposed to just integrated. Does “fully integrated” mean every other person or is it 2 to 1, or 1 to 2, yes what are the right proportions for PROPER INTEGRATION?).
First we have people receiving “services”. No definition of what “services” means but that is a detail. (Maybe what they meant to say was Disabled Individuals who work at a Sheltered workshop are “receiving services” but that is NOT what they said so we are left wondering. What “services” are they receiving? Being supervised by a boss? Hummmmm)
Second those receiving the services MUST BE INTEGRATED (I assume that means) in the present of others who are not receiving services as if there is some benefit (magic) that is realized by the person receiving that service to be in the presence of those who are not receiving that service or is it the other way around?
I happened to witness a person with two moderately brain impaired individuals sitting at a table in one of the cafeterias in the Wisconsin Memorial Union. I thought to myself oh this is what integration is all about. The service provider sat reading and doing some work and those receiving the service sat eating one gold fish at a time as they were doled out one gold fish at a time and being shushed when they tried to say something. Is this what INTEGRATION IS ALL ABOUT?????
A more basic question is does Rosa and her co-worker receive a SERVICE??? Surely that is the attempt with this question, to establish that WORKERS at a sheltered workshop are receiving services and therefore MUST BE INTEGRATED with others. Rosa is PAID as is her boss, Pam. Yes Pam makes more money than Rosa BUT Rosa WORKS, she does not RECEIVE a SERVICE. Yes her wages are in essence subsidized but then again are not the wages of many low income workers also subsidized??
As this demonstrates this is all just a GAME. A list of questions that if one doesn’t get you the next one might.
How a Government Agency, CMS, that is RESPONSIBLE for ALL DISABLED can be so biased against some is truly incomprehensible. Why the States and organizations representing the interest of Rosa and her fellow workers, who have mild to severe brain impairment, have not challenged CMS is a mystery to me to say the least.
This whole process reminds me of the story of the frog in the cold water. The water is slowly heated and by the time the frog realizes that it needs to get out it cannot or it never was aware but either way …. Whereas if the frog is put into hot water it knows to jump out.
CMS is slowly setting the stage for the elimination of Sheltered Workshops and this is the NEXT STEP. We must make sure that this their last step, their last attempt!!
The Coe of Federal Regulations 42 Section 441.301 (c) deal with the Person Centered Planning Process.
Section 441.301 (c) (2) (i) “Reflect that the ‘setting’ in which the individual resides is CHOSEN by the individual.”
WOW the individual or their guardian have the POWER TO CHOOSE WHERE THEY WORK!
And then totally UNREALTED to Person Centered Planning CMS goes on
“The State MUST ensure that the settings chosen by the individual is integrated in, and supports full access of individuals receiving Medicaid HCBS to the greater community, including opportunities to seek employment and work in competitive integrated settings, engage in community life, control personal resources, and receive services in the community TO THE SAME DEGREE of access as individuals not receiving Medicaid HCBS.”
WOW WOW! Talk about in loco parentis! Yes a term from the 60’s. CMS is FORCING the States to do their bidding!! In the very same section we go from places to work or live “chosen by the individual” to the State must ensure that ALL SETTING (ALL PLACES OF EMPLOYMENT, CARE AND LIVING) MUST (Not should or might) MEET THE CMS STANDARD which means that they MUST in essence BE APPROVED BY CMS!!! There are many more details about the planning process which empower the individual/guardian in many ways. But, WHO and what PROCESS takes control? CMS through the requirements placed upon the STATE or the individual’s right to CHOOSE as set forth in CMS own rules?
Rosa can choose anything she wants as long as it is from the CMS APPROVED LIST!!!!!!!!!!!!
WOW!! WHO IS GOD HERE?????
Then we one gets to section 441.301 (c) (4) Home and Community-Based Settings. It starts off with a force. They found the word MUST!
“Home and community-based settings MUST have ALL of the following qualities AND such other qualities as the Secretary determines to be appropriate, based on the needs of the individual as indicated in their person-centered plan.
A long list of standards follows which if ALL MUST BE CHECKED YES! All MUST be complied with! Yes in the instructions to fill out the form it is indicated that No answers are OK but if these rules stay in effect within 5 years on YES will be acceptable. WHAT DOES THIS MEAN and HOW CAN IT BE IMPLIMENTED??? What TRUMPS what? Does person-centered plans TRUMP community-based setting or does Community-based settings TRUMP person-centered plans????
PERSON-CENTERED PLANS MUST
TRUMP ALL OTHER CONSIDERATIONS
The most basic thing that CMS ignores is their OWN PERSON CENTERED PLANNING PROCESS, That is clearly established by CMS itself in CFR 42 441.303 (c) (1,2,3). Yes they provide a specific set of rules for Person Centered Planning but they then totally ignore them!!!!!!!!!!!
The Draft Non Residential Provider Self Assessment is SILENT on the RIGHTS of every individual to have a “Person Centered Plan”. Without DEMANDING that the Self Assessment be rewritten TO INCLUDES ALL DISABLED NOT JUST THOSE WITH little or no brain impairment, Rosa Spellman my daughter, the person I AM RESPONSIBLE FOR TO PROTECT HER RIGHTS, begins the process that will lead to the loose of the sheltered workshop that is HER LIFE. (Attached is the Gifts of the Sheltered Workshop) The importance of a person centered plan, surely is self-evident and yet it is totally ignored. Why would DHS in its proposed Self Assessment ignore the elements of the person centered planning process? The Person-centered Planning Process is the KEY and yet it is TOTALLY IGNORED? WHY???
By ignoring the Person-centered Planning Process DHS is choosing to accept the rules as published by CMS rather than challenging them by representing the thousands of individuals in the State of Wisconsin who are harmed by them!
CFR 42 Section 441.301(c) (1,2,3) provides detailed rules for the Person Centered Planning process.
Sec 441.301 (c) (1) “The individual will lead the person-centered planning process where possible.”
This is fine for those folks who are fortunate in having a disabled loved one who has such abilities BUT WE ALL KNOW THAT there are tens of thousands of individuals who do not have such abilities! They start with “The individual will lead …” which again assumes that the disabled person has the brain capacity to lead. It must read the individual and/or their guardian will lead…… And then the second sentence of the section in a way says it all!
“The representative should have a participatory role, as needed and as defined by the individual”
First the word “should” is not appropriate and instead “must” or “shall” must be used. As it is written WHO has the power to determine who is “needed”, who can participate?? Talk about setting the stage for more lawsuits. Yet another example of denial that tens of thousands of INDIVIDUALS WITH DISABILITES HAVE GUARDIANS and the rule does not even have the courtesy to ACKNOWLEDGE that Guardians ARE the ones RESPONSIBLE for the individual. Yes there is, a “new”, guardianship called supportive guardianship which is nothing more than what in the past was called common sense. (See foot note below for more details)
The following sections further define the Person-Centered Planning Process
Section (c) (1) (i) “Includes people chosen by the individual”
Section (c) (1) (vii) “Offers INFORMED CHOICES to the individual REGARDING the SERVICES and SUPPORTS they receive and from WHOM”.
Yes this says it all IT IS THE INDIVIDUAL or their GUARDIAN who DETERMINES WHERE they LIVE and WORK!
Rosa Miriam Palmer Spellman
By Thomas Spellman
If the individual you are Guardian for can participate to some degree in the decisions that impact his/her live then yes they should be encouraged to do that. As in the case of Justice for Jenny that became a Federal Case of individual rights i.e. a Family fight that got turned into something it was not, about personal freedom. The parents were not happy with what their daughter was doing and with whom she was doing it with (Hummm sound familiar?) and tried to control her through the guardianship process. It was a family struggle, not a Federal case where hundreds of individuals were having their rights ignored by their guardians. The point is simple the vast majority of people who are guardians protect the individual that they are the guardian for. We must distinguish the difference between the guarantee of individual rights for all vs the individual right of an individual. There is a difference. Parents trying to control their daughter’s behavior should not be the makings of a Federal Case. It may be necessary to settle the family fight but that is what it is a family fight.