extremewheelchairs
Member
- Joined
- Apr 20, 2009
- Messages
- 23
- Reason
- PALS
- Diagnosis
- 09/2005
- Country
- CA
- State
- ontario
- City
- toronto
This is a copy of the letter i just sent my doctor explaining what has been happening and why my health care has deteriorated so badly and the evidence-the videos i have of their words to me (CCAC) as well as links to sections of the law that they have violated.
I hope you take the time to read it as well as watch the videos.
thank you,
-minna
"I have the right to continued existence even though I am motor neuron 'disabled'".
---------- Forwarded message ----------
From: extremewheelchairs
Date: Mon, Sep 13, 2010 at 02:25
Subject:
Tomy doctor, and copies sent to ALS society Ontario )
Hello Dr. *****,
It is time some truth is to be revealed.
As CCAC only sends you their altered and misrepresnted views via letters and reports, I have nothing else to share except the testimony of myself, that of a MD who has known me for 12 years and let you listen to recordings of the words CCAC says to me in private, which you never hear because their subsequent letters always leave out what they said at my home as well as misrepresent what has actually happened.
This has been going on for a long time with CCAC-the mis representation of what I am like, and what my unacceptable 'behaviours' are, especially when no one has evidence of it, yet my evidence lays in emails and recordings of CCAC case managers humiliating me, threatening me and ignoring my attempts to communicate or participate even in my own care plan (which violates section 5 of the Home Care Bill of Rights - subsection 3 of the Long-Term Care Act 1994 and sections of the Home Care and Community Services Act 1994)
Please allow me to share just the past months actions of the CCAC which no one is aware of, except the nurse who was here to witness the recordings. She has been making frantic efforts to intervene with her agency- and her agency seems very willing to provide the care needed, and in fact stated in their Sept. 10th 2010 email to me that CCAC had "approved" them to offer me nursing services just for this weekend. So now, CCAC is expecting to be asked for permission for weekend nursing, while it is in my service plan to have nursing daily as well as PSW, the Home Health Care Bill of Rights tell that "According to the law the CCAC or agency who provides home care services to you has agreed to follow the Bill of Rights even if they have never made a written or spoken agreement with you. Breaking this agreement is 'breach of contract' under the law". Furthermore it states that it is possible to "sue CCAC or agency [which pulled out their PSW services] for breach of contract" also they are in violation of section 7 by withdrawing my PSW services.
As shown on YouTube - We can't have that! .wmv ("we cant have that"-quoting CCAC case manager) from the day Christa and Vera suddenly appeared to tell me that they cancelled my PSW services 'because no one is willing to service" me-yet the same PSW who worked here offers to come see me, and wash laundry on her own time-that is contrary to what CCAC said in that video as well as their letter indicating the reasons why they canceled the service (interestingly the threats they said to me in person were never brought up in the letter they passed on to you-as my family doctor, and thus the only evidence lays in this YouTube - We can't have that! .wmv.),
As the video clearly shares CCAC managers words that the mere fact of mentioning the hunger strike I WAS on, in Jan. 2009, brought forth the violation of section 7 of the Home Care Bill of Rights "reprisals" I "have the right to speak freely, ask questions and make complaints. No one has the right to take action against [me].... punish [me], or take away services"-which CCAC did the following day after I mentioned that hunger strike,'I lost my chance to sleep in m own bed, to be washed, and my water intake was reduced in half immediately, Yet for over a year YouTube - Sudbury disabled woman says she still isn't getting proper care has been on the internet, while the reporter on this news story, and the other woman as an MPP, have their news report with words of strong condemnation of prior CCAC actions against me, and they have not been 'punished' in this manner, or had their fluid intake reduced in half, denied basic personal hygiene (and rightfully so)-yet it is not only a violation of the Long-Term Care Act 1994 (which governs CCAC) but of basic human rights to perpetuate sleep deprivation, reduce fluid intake in half, and deny hygiene to me- it is even a violation of the UN code detailing the treatment of prisoners of war yet perpetuated by Canadian government health services to patients. It is a criminal offense to withdraw the 'necessities of life' from someone who is dependent on you to provide this. I am to be without food, water, or medications for more then 48 hours weekly. If I was a dog, the SPCA and police would charge and fine the person(s) doing this to an animal. Yet it is acceptable for me why?
All of which are offences to the "Home Care Bill of Rights" as set out in Part 3 of the Long-Term Care Act 1994 [which applies to CCAC]) (and evidence shows they followed through-see email dated: from Christa Halverson to me (attahes below Dr. King's letter of Apr 10th 2010) Although the intended recipient was Vera -my case manager-her boss sent it to me by accident, where she indicates it is "Excellent!" that due to being humiliated, insulted and treated like a child by one of the nurses, whom I requested to not have after he falsely accused me of trying to pull out my PICC line (as stated in YouTube - We can't have that! .wmv), yet all I did was offer to help with disconnecting the lines and flushing, duties which I was delegated to do myself alone a year ago when I was physically capable of doing that. As the video shows, when I tried to type what i was doing, Christa quickly would not permit me to communicate, and stated frankly "yes you did". (again violating section 5 the Home Care Bill of Rights, which states that I have the right to 'be involved at every stage when decisions are made about the services should get". I was not even given the right to speak about what happened, as my services were taken away because I was falsely accused of something I had no intentions of doing, infact the opposite- trying to help as I do with the other PICC line RN and always in the past (clearly if I planned to take out the PICC line it would not still be in my arm),
On my defense has been Dr. King states the following in his emails dated April 9th and 10th:
"I have known her for 12 years and do will not stand back and watch people who acknowlegde they do not understand autism or Minna as a human being , make judgemental comments about her when she is fighting for her life Being disbelived and incorrectly understood is the story of Minnas life"
and
" the compassion she is more than capable of providing to those around her who choose not to judge her."
and
" Non of us are in a position to abusively judge Minna"
Finally, there will be many more videos posted of meetings with CCAC which will show the truth of how they speak to me, and what they have accused me, and threatened to do to me while in the privacy of my home. As well as on the last day, last hours of my daugthers visit in January they also refused to allow her to ask questions not merely as the only family member who has been here to speak to them but also as my power of attorney. In fact they falsely state in this YouTube - I don't Care-CCAC tells my girl in frustration.wmv("I dont care CCAC tells") how the power of attorney is not 'legal' without a phone number -despite the fact that the forms do not require this information to be legal and they will not speak with her anymore. There is a clear tone of frustration when the case manager literally yells out "I DON'T CARE!" as my daugther starts to cry.
The legal action and further media intervention is an option to now seriously consider, as this has been going on for way too long, my health has been compromised to the degree that purely due to lack of proper care I have suffered sepsis several times, pneumonia, been on a ventilator in a coma due to the mismanagement of my home care under CCAC. As you know, these are life threatening for individuals in my health condition.
I have come to trust you to be dedicated and compassionate Doctor, and believe in your willingness to help me live at home, which is my right, and now we can clearly see that it is not necessarily a lack of service providers or me who have created this situation of a government sanctioned 48 hr/wk starvation program I have been placed upon.
With respect,
-minna
That was the best I can anymore do.
I can not speak, and have to rely only on the CCAC to help me with much. I have a Gtube, (nothing by mouth-not medications etc.), to change the diapers, or get me on the commode.
to help me with the ceiling lift so i CAN get into bed.
The sad part is, that ALS society has helped me TREMENDOUSLY to equip my home for the benefit of the workers helping me. With ceiling lifts, bath seats, feeding pump, and a ROHO mattress for the bed I have not slept in for 6 weeks.
5 weeks ago my PSW services were cut away, and since then i have not left my electric wheelchair except to be lifted to the commode or change the diapers once a day by the morning nurse. So when I have accident at day time, i must sit in it until the next morning.
I have had nurse peel off dried feces off me, as i had sat in it so long.
Today, every time i get email, letter or a visit from CCAC, i immediately think of what it will do to my demise. I know I will die one day regardless, but I now fear this slow starvation program, no water or medications, and no one will help change the diapers or onto the commode from Friday morning until Monday morning-that infact turns into 3 full says before someone would empty my catheter bag, or change the diapers.
this will kill me, before ALS ever will.
Now each time they contact me, i fear for my life.
als does not make me fear for my life, as I accept it, understand its not fair, or what ever, but i didnt expect fair, or what ever, i only expect that i do the best i can to be a decent human while i am alive.
Yet now,
each time they contact me, with these things happening, a small part of me dies inside.eventualy i will competely die on the inside, leaving my empty body to sit in feces, until its demise (which clearly wont take long with this. ).
They initally were to start the starvation plan Sept 11/12th but now the one acengy where one of my nurses comes from was able to convince them to give me service of a nurse this weekend, so they will start this next weekend- Sept 18/19th.
I share this,
not because i think, or expect you all to DO something about it,
but more as a warning,
that if you do not have family and friends around you,
if you are alone in a home like i am,
this could happen to you.
please read those links, as they are your rights also.
and if someone takes away your rights,
and you still have strength,
please help save yourself further suffering by 'arming' yourself with information, so you can respond quickly.
me, i fear this is too late.
who can save me now?
i have no friends or family around, my kids had to move away from me, because i am a single parent and when i became this ill i could not care for them.
So they moved away, two yrs ago my son and last year my daughter (this january she will turn 18 and it will be 2 yrs since she left at just 2 days prior to her 16th birthday-i missed it -and i cry now daily for my children, for i can not tell them this is happening to me.... how can they survive knowing that their mom didnt die of ALS but was starved to death in her own feces sitting in a chair she never left.
my daugther allready has suffered more then enough.
she cried reading the ALS society website for kids of PALS.
as she said, " but mom i didnt read about anyone like us. kids who have only one parent, so we become orphans. the other kids often have another parent left, they get to stay in their home, their things remain with them, and their friends neighbourhoods and schools stay the same-but me, i have to go away, leave the only place i ever knew as home, all my friends, my province, my school my town, to move with peiople i barely know in the other side of the country and leave most of my belongings behind as i cant take them on the plane with me"
so mature from a 15 yr old (at the time) but also very sad to know that ALS has affected her this way,
she has lost everything she knows,
her friends,
her school,
her neighbourhood
her home
her community,. city and province,
and her ONLY PARENT.
at the age of 15.
i cant write anymore i cry too much as you can see i propably made too many spelling errors lately as i cant see through the tears.
I hope you take the time to read it as well as watch the videos.
thank you,
-minna
"I have the right to continued existence even though I am motor neuron 'disabled'".
---------- Forwarded message ----------
From: extremewheelchairs
Date: Mon, Sep 13, 2010 at 02:25
Subject:
Tomy doctor, and copies sent to ALS society Ontario )
Hello Dr. *****,
It is time some truth is to be revealed.
As CCAC only sends you their altered and misrepresnted views via letters and reports, I have nothing else to share except the testimony of myself, that of a MD who has known me for 12 years and let you listen to recordings of the words CCAC says to me in private, which you never hear because their subsequent letters always leave out what they said at my home as well as misrepresent what has actually happened.
This has been going on for a long time with CCAC-the mis representation of what I am like, and what my unacceptable 'behaviours' are, especially when no one has evidence of it, yet my evidence lays in emails and recordings of CCAC case managers humiliating me, threatening me and ignoring my attempts to communicate or participate even in my own care plan (which violates section 5 of the Home Care Bill of Rights - subsection 3 of the Long-Term Care Act 1994 and sections of the Home Care and Community Services Act 1994)
Please allow me to share just the past months actions of the CCAC which no one is aware of, except the nurse who was here to witness the recordings. She has been making frantic efforts to intervene with her agency- and her agency seems very willing to provide the care needed, and in fact stated in their Sept. 10th 2010 email to me that CCAC had "approved" them to offer me nursing services just for this weekend. So now, CCAC is expecting to be asked for permission for weekend nursing, while it is in my service plan to have nursing daily as well as PSW, the Home Health Care Bill of Rights tell that "According to the law the CCAC or agency who provides home care services to you has agreed to follow the Bill of Rights even if they have never made a written or spoken agreement with you. Breaking this agreement is 'breach of contract' under the law". Furthermore it states that it is possible to "sue CCAC or agency [which pulled out their PSW services] for breach of contract" also they are in violation of section 7 by withdrawing my PSW services.
As shown on YouTube - We can't have that! .wmv ("we cant have that"-quoting CCAC case manager) from the day Christa and Vera suddenly appeared to tell me that they cancelled my PSW services 'because no one is willing to service" me-yet the same PSW who worked here offers to come see me, and wash laundry on her own time-that is contrary to what CCAC said in that video as well as their letter indicating the reasons why they canceled the service (interestingly the threats they said to me in person were never brought up in the letter they passed on to you-as my family doctor, and thus the only evidence lays in this YouTube - We can't have that! .wmv.),
As the video clearly shares CCAC managers words that the mere fact of mentioning the hunger strike I WAS on, in Jan. 2009, brought forth the violation of section 7 of the Home Care Bill of Rights "reprisals" I "have the right to speak freely, ask questions and make complaints. No one has the right to take action against [me].... punish [me], or take away services"-which CCAC did the following day after I mentioned that hunger strike,'I lost my chance to sleep in m own bed, to be washed, and my water intake was reduced in half immediately, Yet for over a year YouTube - Sudbury disabled woman says she still isn't getting proper care has been on the internet, while the reporter on this news story, and the other woman as an MPP, have their news report with words of strong condemnation of prior CCAC actions against me, and they have not been 'punished' in this manner, or had their fluid intake reduced in half, denied basic personal hygiene (and rightfully so)-yet it is not only a violation of the Long-Term Care Act 1994 (which governs CCAC) but of basic human rights to perpetuate sleep deprivation, reduce fluid intake in half, and deny hygiene to me- it is even a violation of the UN code detailing the treatment of prisoners of war yet perpetuated by Canadian government health services to patients. It is a criminal offense to withdraw the 'necessities of life' from someone who is dependent on you to provide this. I am to be without food, water, or medications for more then 48 hours weekly. If I was a dog, the SPCA and police would charge and fine the person(s) doing this to an animal. Yet it is acceptable for me why?
All of which are offences to the "Home Care Bill of Rights" as set out in Part 3 of the Long-Term Care Act 1994 [which applies to CCAC]) (and evidence shows they followed through-see email dated: from Christa Halverson to me (attahes below Dr. King's letter of Apr 10th 2010) Although the intended recipient was Vera -my case manager-her boss sent it to me by accident, where she indicates it is "Excellent!" that due to being humiliated, insulted and treated like a child by one of the nurses, whom I requested to not have after he falsely accused me of trying to pull out my PICC line (as stated in YouTube - We can't have that! .wmv), yet all I did was offer to help with disconnecting the lines and flushing, duties which I was delegated to do myself alone a year ago when I was physically capable of doing that. As the video shows, when I tried to type what i was doing, Christa quickly would not permit me to communicate, and stated frankly "yes you did". (again violating section 5 the Home Care Bill of Rights, which states that I have the right to 'be involved at every stage when decisions are made about the services should get". I was not even given the right to speak about what happened, as my services were taken away because I was falsely accused of something I had no intentions of doing, infact the opposite- trying to help as I do with the other PICC line RN and always in the past (clearly if I planned to take out the PICC line it would not still be in my arm),
On my defense has been Dr. King states the following in his emails dated April 9th and 10th:
"I have known her for 12 years and do will not stand back and watch people who acknowlegde they do not understand autism or Minna as a human being , make judgemental comments about her when she is fighting for her life Being disbelived and incorrectly understood is the story of Minnas life"
and
" the compassion she is more than capable of providing to those around her who choose not to judge her."
and
" Non of us are in a position to abusively judge Minna"
Finally, there will be many more videos posted of meetings with CCAC which will show the truth of how they speak to me, and what they have accused me, and threatened to do to me while in the privacy of my home. As well as on the last day, last hours of my daugthers visit in January they also refused to allow her to ask questions not merely as the only family member who has been here to speak to them but also as my power of attorney. In fact they falsely state in this YouTube - I don't Care-CCAC tells my girl in frustration.wmv("I dont care CCAC tells") how the power of attorney is not 'legal' without a phone number -despite the fact that the forms do not require this information to be legal and they will not speak with her anymore. There is a clear tone of frustration when the case manager literally yells out "I DON'T CARE!" as my daugther starts to cry.
The legal action and further media intervention is an option to now seriously consider, as this has been going on for way too long, my health has been compromised to the degree that purely due to lack of proper care I have suffered sepsis several times, pneumonia, been on a ventilator in a coma due to the mismanagement of my home care under CCAC. As you know, these are life threatening for individuals in my health condition.
I have come to trust you to be dedicated and compassionate Doctor, and believe in your willingness to help me live at home, which is my right, and now we can clearly see that it is not necessarily a lack of service providers or me who have created this situation of a government sanctioned 48 hr/wk starvation program I have been placed upon.
With respect,
-minna
That was the best I can anymore do.
I can not speak, and have to rely only on the CCAC to help me with much. I have a Gtube, (nothing by mouth-not medications etc.), to change the diapers, or get me on the commode.
to help me with the ceiling lift so i CAN get into bed.
The sad part is, that ALS society has helped me TREMENDOUSLY to equip my home for the benefit of the workers helping me. With ceiling lifts, bath seats, feeding pump, and a ROHO mattress for the bed I have not slept in for 6 weeks.
5 weeks ago my PSW services were cut away, and since then i have not left my electric wheelchair except to be lifted to the commode or change the diapers once a day by the morning nurse. So when I have accident at day time, i must sit in it until the next morning.
I have had nurse peel off dried feces off me, as i had sat in it so long.
Today, every time i get email, letter or a visit from CCAC, i immediately think of what it will do to my demise. I know I will die one day regardless, but I now fear this slow starvation program, no water or medications, and no one will help change the diapers or onto the commode from Friday morning until Monday morning-that infact turns into 3 full says before someone would empty my catheter bag, or change the diapers.
this will kill me, before ALS ever will.
Now each time they contact me, i fear for my life.
als does not make me fear for my life, as I accept it, understand its not fair, or what ever, but i didnt expect fair, or what ever, i only expect that i do the best i can to be a decent human while i am alive.
Yet now,
each time they contact me, with these things happening, a small part of me dies inside.eventualy i will competely die on the inside, leaving my empty body to sit in feces, until its demise (which clearly wont take long with this. ).
They initally were to start the starvation plan Sept 11/12th but now the one acengy where one of my nurses comes from was able to convince them to give me service of a nurse this weekend, so they will start this next weekend- Sept 18/19th.
I share this,
not because i think, or expect you all to DO something about it,
but more as a warning,
that if you do not have family and friends around you,
if you are alone in a home like i am,
this could happen to you.
please read those links, as they are your rights also.
and if someone takes away your rights,
and you still have strength,
please help save yourself further suffering by 'arming' yourself with information, so you can respond quickly.
me, i fear this is too late.
who can save me now?
i have no friends or family around, my kids had to move away from me, because i am a single parent and when i became this ill i could not care for them.
So they moved away, two yrs ago my son and last year my daughter (this january she will turn 18 and it will be 2 yrs since she left at just 2 days prior to her 16th birthday-i missed it -and i cry now daily for my children, for i can not tell them this is happening to me.... how can they survive knowing that their mom didnt die of ALS but was starved to death in her own feces sitting in a chair she never left.
my daugther allready has suffered more then enough.
she cried reading the ALS society website for kids of PALS.
as she said, " but mom i didnt read about anyone like us. kids who have only one parent, so we become orphans. the other kids often have another parent left, they get to stay in their home, their things remain with them, and their friends neighbourhoods and schools stay the same-but me, i have to go away, leave the only place i ever knew as home, all my friends, my province, my school my town, to move with peiople i barely know in the other side of the country and leave most of my belongings behind as i cant take them on the plane with me"
so mature from a 15 yr old (at the time) but also very sad to know that ALS has affected her this way,
she has lost everything she knows,
her friends,
her school,
her neighbourhood
her home
her community,. city and province,
and her ONLY PARENT.
at the age of 15.
i cant write anymore i cry too much as you can see i propably made too many spelling errors lately as i cant see through the tears.