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Topic: for my sister

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Subject: for my sister
Date Posted: 11/5/2008 1:13 PM ET
Member Since: 8/27/2006
Posts: 68
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my sister sent this to me, please help me help her.

 

 

Hi my loving family,

As you all know i don't write much e-mails, for one thing i think its much easier to talk to someone either over the phone or in person. But this had so much effect on me that i had to share with all of you. All of you are aware that i work in a nursing home as a CNA i enjoy my work and care deeply about the residents i work with as well as some of the staff i work with and for. Well i work with this nurse who is a outstanding nurse. Her name is Fran Joncas. She has been a nurse for well over 25 years. She is great at what she does and she a caring, awesome person. I love working with her, i talk about her to my mom all the time. She not just a great nurse i work with but also a great friend of mine. She is always there to listen and to comfort me when i am in need. We joke and goof around all the time. The reason why i am telling you all this is because she needs everyone's help. Not just from my family but from your family's, family's.  You see she has a daughter named Janay. Jan
ay is 35 years old and is severely-handicapped, blind, and extremely challenged.

Its better if i let her explain to you about her daughter. So here is parts and pieces of an e-mail she sent me a while back.

"Janay was not born this way, we believe, which is another story in itself.   Janay is severely brain damaged, has continuous seizures 24 hours, is blind from the cortex in her brain, (eyes are 100% healthy), epileptic, cerebral palsy, and severely mentally retarded.  She has had numerous orthopedic surgergies, so her internal organs would not compromised by many abnormalities, especially her lungs & heart.  Janay acquires many times dehydration, UTI's, ect., because I absolutely refuse for her to have a G-tube inserted (a g-tube is a feeding tube that inserts the stomach so the patient can get nurtients).   (In this state, once a G-tube is surgically implanted, for nutritional/life-preserving measures, it CANNOT be taken out.)  Janay is on a puree diet (basically mushed up food), and is a very hard/fussy feeder, and refuses to eat/drink, for most C.N.A.'s  at her facility. Janay is one of the few at her facility, who eats by mouth; and definitely one of the "kids" residing there,
with a strong personality......Janay knows what she likes, and what/who, she doesn't like, and LOUDLY (earth-shattering) verbalizes through screams, the things she doesn't like !!   She does not talk.
Janay is also a Hoyer lift (99% of them are there) due to her multiple orthopedic surgeries.  One of her surgeries for severe scolosis (severe curvature of the spine) involved a 14 hour surgery, inserting 2 rods in her spine, with 150 hooks/wires connected to her spine.  All done at Children's Hospital, in Boston.  
She also has a metal plate in her L) hip, so that the top of her thigh bone will not come out of the socket. 
Her L) thigh muscle was also cut first, so the muscle spasms/pulling,  would stop the head of her thigh bone from coming out with the metal plate, for the future.  
Janay has been hospitalized many times, for different reasons.  But none takes the cake, as when I found the 2 rods in her spine, coming out of the top of her neck, through the skin. (the ortho surgeon misjudged the length of the rods)   No ambulances were available, (all busy) so Len & I transferred her to the back seat of my car, and got Janay to the front door of Children's, and she had emeregency surgery to "trim" the top of the rods.   She now has a "bursa" at the spot, in her neck.  A bursa is a ball of fluid, that has collected in one spot. 
Janay also suffers from painful menses, (yes, that comes every month, unfortunately) and has developed multiple cysts in her breasts & ovaries.  (Hereditary - from me).  She can not stand, so I do refuse mammograms, so instead, they perform breast/pelvic ultrasounds, to monitor her fibroid cysts.  Just like her other "friends" at the facility, Janay does not walk, and has a specialized w/c, custom-made for her.  The other "kids",  do too.  
Neurologically, they are all under the age of one, including Janay.

Here is a link to Janay's facility.     

        http://www.sevenhills.org/shg.html     

Click on the pic on the website at bottom left, and you will see a video of the NEW facility, built in Oct. 2006.   (Hoyer lift in the video, is yes, on the ceilings !!!)

The name of it is "Seven Hills Pediatric Center at Groton."
Seven Hills is basically a non-profit foundation, owning multiple facilities, basically geriatric;  and one of their facilities is in North Andover, on Rt. 114.
Janay's is the first pediatric facility they have purchased; but medically, it is run by Children's Hospital of Boston.  We have the best of BOTH worlds, regarding Seven Hills Foundation & Children's Hospital."


As you can see Fran and Janay has had a long and complicated life already. And my sympathies go out to Fran's family. It took Fran years to find a place that was right for Janay. She cares about her daughter a whole lot and doesnt want to see anything bad happen to her. She's always telling me stories about her daughter. But one story that i want to share with you all is the story of how a judge in Massachusetts wants to move Janay and 800 more people like Janay out of these facilities that they are in and move them to group homes. In group homes there's not much medical help there. None of the "kids" would survive there, even if they survive the moving part. The reason why this judge wants to move all these "kids" is because back in 1999 a women was moved into a geriatric facility and she hated it. She wanted to be in a group home but there was no room for her. So she deiced to sue the state of Mass. She won her case and now to solve the problem the judge wants more group homes an
d wants all the "kids" to move in there.


i have also attached an e-mail from Fran that explains the case and what the judge wants to do. This asshole is taking Fran's rights as a mother and as the legal caregiver away. Not just Fran's but the other 800 "kids" family members. Fran and some other of the families have come up with a plan of action but needs everyone's help. They set up a website to sign a petition  to help them stop this terrible thing. All i ask from you guys is to sign the petition and ask everyone else you know to sign it too.  i dont ask for much in life but if you could help me by helping them it would be really kind of you. So here is the other part of the e-mail she has sent me about the case and there mission to stop all  this. please read it over and click on the link and sign the petition and forward this e-mail to everyone you know. if you have any questions about anything just contact me and i will find out the answers for you. Thanks for your time..


love always
Sam



"Janay and all the severely multipy-handicapped children who reside at Seven Hills Pediatric Center in  Groton, drastically need your help.

The MA Dept. of Mental Retardation, mandated by Federal Judge Neiman on May 22, 2008, will be forcing/evicting all these very medically-fragile children from the only home they have known, over the next 4 years  - to understaffed & medically non-skilled group homes, through a new Mass. program,  called "Into the Community."

This all came to fruition, when  a woman named Loretta Rolland filed (& won) a lawsuit against the Gov. &  the Commonwealth of Mass back in 1999.  After her acute hospitalization, Ms. Rolland needed further medical care and was placed in a geriatric nursing home in Mass.   Ms. Rolland sued the state & Gov.,  for she claimed she was not receiving the proper services for rehabilitation, and demanded to live & receive rehab services in a group home - which none were available to her.  Alas, a lawsuit that the federal government also was made aware of.

Now called the Rolland Settlement,  Federal Judge Neiman has made law,  that 640 chronically-ill patients residing in nursing homes throughout the entire state of Mass., be moved to group homes over the next 4 years.  Publically viewable, is  the Federal Court's website on the Rolland lawsuit/settlement at:         www.RollandATReview.org    regarding the Rolland Settlement,  which affects every citizen in Mass., who currently require long-term placement due to medical needs. (Possibly affecting in the future, more states throughout our glorious country.)

An active patient "moving list" for the year 2008 has already been compiled by DMR.
Luckily, Janay is not on the moving list for 2008;  but will be, within the next 3 years.
There are currently 31 children on the moving list for 2008 - and actions by DMR are already in motion, to move these  31 medically-fragile children before/around the 2008 holidays.  (!) 

In one of our efforts to stop this tragedy to our children,  myself & other legal guardians of the app. 77 children have formed a Family Council, and are attempting to obtain local & national public awareness of this atrocity, to save their lives.   We have had the good fortune of volunteers, to construct a website, to avert this tragedy for them.

My nephew, J J McKain, has been the consultant to the website. 
JJ has stressed the importance of obtaining signatures on the website, &  much other professional expertise.  Hats off to JJ, for assisting us with this much formidable endeavor, against the state & federal governments !
The Family Council is  aiming to collect at least 50,000 signatures. 
We are all asking you, to please read the website, and sign our petition to fight for our custodians/childrens/siblings lives, at the following link :

                                        www.avertrollandtragedy.org

On the website, are a few pics of Janay, also.  One pic is of Katie, Emelie McKain (2 of my nieces) with Janay on a visit, and one is of  my sister, Lucy McKain,  also pictured with Janay. 
Lucy has been a formidable force with her professional expertise/advice in assisting to stop this tragedy, also.

All of you are also requested in assisting with this endeavor, by signing the petition on the Rolland website. 
Please contact me, if you have any type of personal/professional connections to the Governor, or ideas, in fighting this atrocity with  the Family Council & I  through my email address .
We have been attempting to meet with the Governor on this issue, even with the help of our local politicians, but to no avail.

Most of the children at Seven Hills/Groton require 24 hour skilled nursing care, and could possibly die without receiving it.  
Most of the children  have tracheotomy's,  are fed thru G-tubes, and some are even incapable of breathing on their own, and require mechanical ventilation.  
Even though Janay does not have those serious medical conditions, she does have other severe medical diagnosis' that would become much worse, and could claim her life.

Many times I have been approached for G-tube placement for Janay, but I have refused, since I have seen the continuous daily horrors of G-tubes.  Janay is at severe risk for dehydration & malnutrition due to her refusal to eat & drink at times, but because of the highly skilled staff interventions at Seven Hills,  she is extremely well cared for daily in those needs and is fed by mouth.  If Janay has any change in her daily routine,  her failure-to-thrive diagnosis worsens, and will become hypothermic, & dehydrated by refusing to eat & drink - which results in temporary hospitalization for IV therapy & other treatments necessary to sustain her life.

In October of 2006,  the Seven Hills Foundation based in Fitchburg, MA finished construction of a  state of the art, highly technological medical facility for all of our severely multipy-handicapped children. 
The facility is absolutely gorgeous, and more than exceeds, all their daily needs to survive & flourish. (medical care, therapies, education to name a few.)    
To view Janay's  new home/facility,   please visit     www.sevenhills.org/shg.html    and click on the picture on the left-bottom, of the screen, to see a small video of the absolute wonders of this pediatric medical facility.

Due to this move from the old building to the new building alone, Janay suffered the diagnosis of "transitional trauma" when she was transferred to the new building.   Janay refused to eat & drink, became dehydrated & extremely hypothermic (her body temp declined to 92.8) & required hospitalization. Janay's body was in shock, and respiratory or cardiac distress was soon to follow.
Janay could not cognitively understand, why there was such a change in her life.  With IV & other treatments, she medically recovered quickly to "her" normal self again, within days.

Janay will again be traumatized in all her bodily functions, if she endures another move to a new facility, new staff, new everything. 
She is cognitively incapable of adjusting  to any new changes in her daily routine.
She and all the other children who are neurologically under the age of one, would suffer once again, and could possibly be fatal for them.  
A few of the children did pass away, when moved from the old facility to the new facility. 

These children's daily medically-fragile needs, would not be provided for, 24/7, in a group home.
Understaffing is only one of the major issues, in these group homes. 
With only one medical need  I am addressing here, regarding transferring,  all these children require transfers from bed to wheelchair via mechanical help, called a Hoyer lift - which 2, sometimes 3 staff are required to transfer them safely, if the machine is working properly.  (Mechanical malfunctioning of these Hoyer lifts are numerous, resulting in fractures & the like, to patients.)
Janay has 150 hooks & wires, and 2 rods in her spine, from past orthopedic surgery, due to severe scoliosis which began to adversely affect all her internal organs, years ago.
Any malfunctioning of a Hoyer lift, or understaffing, could be disastrous for Janay, just in transfers alone; and all the other children, too.
Most of the children at Seven Hills/Groton, have received the same surgery as Janay, due to their incapability to walk, and requiring specially-customized wheel chairs for all their transportation needs.

These children would not receive the HIGHLY-SKILLED nursing care for all their medical-fragile needs, if they are moved to a group home.
Skilled nursing care, such as G-tube feedings, tracheostomy care, ventilator care, administration of G-tube meds, and by mouth medications, skin treatments, lung sounds, ectr., are all required by law to be performed by  licensed nurses - and not, Nursing Aides.   Nurses aides are legally bound to provide the daily hard work  of bathing, dressing, transfers, feeding by mouth, and bed mobility (positioning) ONLY.  (Us nurses couldn't do our job, without them !)   They are not educated to perform sterile technique, ect.,  which any patient requires with any treatment; and if procedures are not followed thru with sterile technique,  this could cause major infections, and more acute health problems for them, on top of the chronic debilitating illness' they already have.
All these children, including Janay, require this daily high-skilled licensed nursing care, and, the direct care provided for by the nursing assistants.


PLEASE join all of us legal guardians, parents, siblings, family & friends,  by signing the petition on the Rolland website, above.
HELP us fight for our children's lives - which Janay's condition is medically stabile, currently, at Seven Hills.    Other children at the facility fight daily with acute illness' that pop-up at any time, day or night, more frequently than Janay.  i.e. trach & vent infections, super bugs that worsen, ect.

Our children are already in their own community, living in Groton, Mass. for many years.    These kids make many trips in & outside of Groton (weather permitting) and visit many other places in the state through the Activities Dept., and 3 handicapped wheelchair vans.   They are not neglected in any way, shape or form, residing at Seven Hills, Groton, in any aspect of their life.   
Janay will be residing at Seven Hills Pediatric Center in Groton for 30 years, this coming Nov. 28. 
Please help stop Janay & all the other kids being evicted, from the only home they have known, some for over 30 years !

Our children are extremely far from benefiting from this political move;  as Loretta Rolland did. 
Our children cannot even talk for themselves, and if they could, most likely would voice their own opposition to moving from their own circle of friends & community, they have known for so many years.

Federal Judge Neiman has also taken away our LEGAL rights as guardians, by implementing legally  the Rolland Settlement for our children.  
He also considers us legal guardians as non-taxpayers, and I quote,  "Let the taxpayers decide where these children should live" and, deemed our voices in the federal courtroom on May 22, 2008 in Springfield, Ma., (which I and 20 other families attended) as hearsay, only !!  The judge also threatened us to be removed from the federal courtroom, for clapping when our lawyers represented our children's medical needs & potentially fatal future prognosis' so appropriately!  He adamantly refused our request through our legal representation, to have our children omitted from this Rolland Settlement.
Is this not the greatest country of legal rights & freedoms, appointed by our Constitution & Bill of Rights ??

If the judge & DMR could GUARANTEE that our children would not medically suffer from the Rolland Settlement Agreement, then we would not have to plea for your help.
No such guarantees exist.

This is a living nightmare, for all of us. 
It is scary to know that one Federal Judge has such power, & uneducated medical knowledge of all the facts regarding our children, and can actually force them to be moved, (evicted in my eyes) through the DMR of Mass. 

We also request, for you to send this to as many people as you know, for their signatures on the website,    www.avertrollandtragedy.org   to assist us in stopping this tragedy to our children. 

PLEASE FEEL FREE TO FORWARD THIS E-MAIL, MY SINCEREST PLEA, TO EVERYONE YOU KNOW.
I am Janay's legal guardian, but first & foremost, her mom.

Thank you for all your compassion, best efforts, & personal expertise for Janay, and ALL the other children at Seven Hills Pediatric Center in Groton, Mass.


With much love and best wishes for you & your family's health & happiness,

Always,


Janay Mary Trabucco
and
Fran Joncas "

Subject: hello
Date Posted: 5/3/2009 7:25 AM ET
Member Since: 5/3/2009
Posts: 1
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**spam post edited by PBS**



Last Edited on: 5/3/09 7:28 AM ET - Total times edited: 3