Dear Caring Disability Community Members...
I received the E.D.’s “written determination” of the grievance submitted on behalf of Tracey. I’ve copied and pasted it below. I did delete each spot where her last name is mentioned and replaced it with her first name, but otherwise left it in tact. As you will see in reading his letter, it’s directed to the board (or some other audience) more than to me, the grievant.
Below that I copied and pasted an email I sent to the chair and vice chair of the board 2 days after finally hearing from the E.D. on 3/22/06. I don’t believe they will respond to it as requested.
Finally, I copied and pasted my response to the E.D.’s “written determination” of the grievance. This WOULD BE my appeal if I made one, but the E.D. took it upon himself to appeal his own “written determination” for me.
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March 20, 2007
TO: DAWGOregon@aol.com
FR: Bob Joondeph, Executive Director
RE: Your email entitled: Grievance Against Oregon Advocacy Center on
Behalf of Tracey
I received an email from someone who identified himself only as “CaPtain D” from the email address DAWGOregon@aol.com. The email contained no other identifying or contact information. The email claims that its sender is “the only representative of my friend Tracey” who died on 12/14/06. The writer states:
"I don’t know everything the P&A did on my friend’s behalf, but I do know several things the P&A didn’t do that they should have as advocates involved with her case. This resulted in my friend being denied the opportunity to seek appropriate and timely treatment and to live for as long and as comfortably as she may have been able to. In fact, I believe the P&A was party to medical neglect and, subsequently, my friend being euthanized."
I recognize the author of this email as David McDonald who has claimed to be a friend of [Tracey] and who came into contact with her in the course of his paid employment. Mr. McDonald has never claimed to be [Tracey’s] relative or legal representative, and has never demonstrated that [Tracey] appointed or acknowledged him as her representative. Mr. McDonald made a complaint to OAC that [Tracey] was being subject to abuse and neglect.
Mr. McDonald asked that OAC represent him when Multnomah County excluded him from participation in [Tracey’s] ISP team due to alleged inappropriate behavior. OAC denied representation because Mr. McDonald is not eligible for OAC services. OAC did provide information to Mr. McDonald on how to effectively advocate within the ISP rules but did not advise him to take any particular action.
Mr. McDonald repeatedly pressed OAC to reveal confidential information about [Tracey] that OAC was neither ethically nor legally authorized to release.
OAC did open a file for [Tracey], investigated the claim of abuse and neglect and took appropriate action to assure that [Tracey’s] rights were honored. It would be inappropriate to set out those actions in this letter because of confidentiality concerns.
The OAC Grievance Procedure states that clients of OAC and those seeking our services may file a written grievance if they are unhappy with our services. Representatives and family members of those individuals may file a grievance on their behalf. As relevant to this situation, a grievance may be filed if there is dissatisfaction regarding the quality or extent of the services provided or if there is a belief that Oregon Advocacy Center has failed to fulfill one or more of its legal obligations.
Having reviewed Mr. McDonald’s complaint and OAC records, I find that OAC provided high quality investigation and advocacy in the matter of [Tracey’s last name misspelled] and fulfilled its legal obligation in her case.
Since Mr. McDonald has indicated a desire to appeal this matter to the OAC Board of Directors, I will refer the matter to the Board’s Grievance Committee. I recommend that the Committee ask Mr. McDonald if he wants to provide any more information but then consider all OAC information so as not to breach our obligation of confidentiality to [Tracey]. As stated above, Mr. McDonald has no authority to have access to any information in OAC records regarding [Tracey]. I recommend that Mr. McDonald be informed of the Committee’s final decision without the disclosure of any confidential information.
Sincerely,
Bob Joondeph
Executive Director
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Sent via email to Jan Campbell and Michael Bailey Chair and Vice Chair of OAC Board on 3/22/07 As of this going out, I’ve heard nothing from either of them.
Hi Jan and Michael,
I'm writing to you in your capacities as Chair and Vice Chair of OAC. I hope the Board Grievance Committee has not followed Bob's lead in dealing with Tracey's grievance. I'd like your response to this email before we go any further. I'd also like to know who is on the Board Grievance committee to ensure there are no conflicts of interest.
I received your Executive Director’s “written determination” of the grievance I submitted to him via welcome@oradvocacy.org as directed in the OAC grievance procedure. I did this on 1/10/07. On 3/20/07 he finally contacted me with his “written determination”. That’s 47 working days after I submitted it. On the OAC website it says I would hear from him with a “written determination” within 15 working days.
After not hearing from him on the 17th working day I mailed my grievance to the OAC Board Grievance Committee on 2/5/07. Later that day Bob emailed me, writing “Sorry for my delay in responding. I will have a decision for you soon. Bob”
On 2/6/07 Emily Avion, signed for, and took the grievance packet delivered by the U.S. mail. In the packet was information proving that OAC (in the person of Bob) had either failed to provide my friend with effective services, or wrongly denied her help. That was 42 days after receipt. On the OAC website it says the Board Grievance Committee would “issue a decision” within 30 days.
In Bob’s email of 3/20/07 he states “Since Mr. McDonald has indicated a desire to appeal this matter to the OAC Board of Directors, I will refer the matter to the Board’s Grievance Committee.” On the OAC website it says that the grievant, and not the Executive Director, can appeal the Director’s “written determination” within 30 work days of receiving the Executive Director’s “determination”. Further, the grievant must specify the reasons for disagreeing with the Executive Director’s “determination and must sign the appeal letter. Today is 2 days following my receipt of his “written determination.”
Understandably, I am confused as to what rules OAC and/or Bob is following here. If there are no time lines or processes involved in the grievance submitted on behalf of Tracey, I’d like to know before I can make an appropriate appeal to the Board Grievance Committee. I will not allow what happened to her to be taken lightly in the way others have. Who she was deserves much, much better.
I look forward to your reply.
Sincerely,
David McDonald
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This I will send to the OAC Grievance Committee if and when I hear back from the Chair and Vice Chair of the OAC Board:
The Executive Directors apparent “written determination” regarding the grievance is stated as:
“Having reviewed Mr. McDonald’s complaint and OAC records, I find that OAC provided high quality investigation and advocacy in the matter of [Tracey] and fulfilled its legal obligation in her case.”
I am in disagreement with this determination for a number of reasons.
First, The Executive Director’s determination omits one of the circumstances under which the grievance was filed:
“As relevant to this situation, a grievance may be filed if there is dissatisfaction regarding the quality or extent of the services provided or if there is a belief that Oregon Advocacy Center has failed to fulfill one or more of its legal obligations.
In fact, the grievance was filed under the following circumstances:
1. When there is disagreement about the decision of OAC not to provide technical assistance or advocacy services (wrongly denied help).
or...
2. There is dissatisfaction regarding the quality or extent of the services actually provided (did not provide effective services).
With these two points in question, I am in disagreement with several other errors, spins and what appear to be attempts to mislead the grievance committee as to the true events in this situation. These need correction before we move on from here. Bob’s words are bolded. Mine are in italics. They are as follows:
1.) I received an email from someone who identified himself only as “CaPtain D” from the email address DAWGOregon@aol.com. The email contained no other identifying or contact information.
The email I sent to welcome@oradvocacy.org on 1/10/07 was where the OAC website specifically states emailed grievances should be sent. The grievance is electronically signed David McDonald aka cAPTAIn dANDy. If the E.D. is suggesting he didn’t know caPtain Dandy was me, he is blatantly lying as you will see further into this.
2.) The email claims that its sender is “the only representative of my friend Tracey” who died on 12/14/06.
The grievance, in reality, says, “As the only representative of my friend Tracey who believed she should have treatment options explored with access to comprehensive information to guide the decisions made, I am filing this grievance on her behalf. Tracey died on 12/14/06, so I am well within the required 30 days for filing this complaint.” Bob’s English teacher must not have told him to quote the WHOLE clause in order to ensure that its meaning isn’t skewed. Bob’s lawyering teacher probably taught him otherwise.
3.) I recognize the author of this email as David McDonald who has claimed to be a friend of [Tracey] and who came into contact with her in the course of his paid employment.
Here Bob is suggesting that perhaps I wasn’t Tracey’s friend. This was something the case manager’s supervisor (who didn’t know Tracey) and the voc. Representative (who saw Tracey a few times a year) also tried to pull. If he had bothered to really do an investigation, he’d be told I was in fact very close to Tracey. Does Bob believe that Tracey was incapable of being or having a friend? Is he saying people you work with can’t be your friend? Whatever he’s saying I find insensitive and insulting. He knows that every meeting I attended regarding Tracey was on my own personal time, not company time. He should also know that the case manager wrote to me on 5/2/06; “I spoke with the other ISP team members regarding your request and it was decided that you become an ISP team member as Tracey's friend and advocate.”
4.) Mr. McDonald has never claimed to be [Tracey’s] relative or legal representative, and has never demonstrated that [Tracey] appointed or acknowledged him as her representative.
Tracey’s communication abilities would not allow her to acknowledge me or anyone else on the ISP team as her representative. I was on the team and recognized, as all team members, as her representative. Also, if Bob didn’t think I was a representative, he never would have met with me and my wife in his office and received information from me about Tracey. As for being Tracey’s “legal” representative, on the OAC website it doesn’t refer to “legal” representative in describing who can submit a grievance.
5.) Mr. McDonald asked that OAC represent him when Multnomah County excluded him from participation in [Tracey’s] ISP team due to alleged inappropriate behavior. OAC denied representation because Mr. McDonald is not eligible for OAC services.
In fact on 8/20/06 I wrote to Bob “I have one question for you, and would like a direct answer. Do you feel it is time that my friend and her one unpaid advocate receive legal representation from OAC?” This was 10 days BEFORE a letter was written by the case manager’s supervisor dated 8/30/06 telling me the ISP team had voted on my continued participation on that team.
He responded on 8/21/06;
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“Dear caP,
You deserve a direct answer. OAC will not provide you with legal representation. You are not eligible for our services and, in any event, our representing you would create a potential conflict of interest. Regarding Tracey, our office is considering whether to get more directly involved. We hope to make that decision by the end of business tomorrow.”
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I replied on 8/21/06:
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“Bob,
What I attempted to make clear in my letter is that I am the only unconflicted voice for my friend in this situation, and that OAC should be representing that voice. Not me, as Cap DanDy, but, apparently, the only person on the ISP team who can represent her interests as far as her civil and human rights. I'm not asking OAC to represent David McDonald or capTain D, I'm asking OAC to not allow a lynching to remove from the team any real voice that my friend has.
My request is that your office does in fact become totally involved as my friend's legal representation through what has happened, is happening, and will happen in her life. I would like to know by the end of business tomorrow if that is the case.”
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This is loaded. First, Bob says that representing Tracey in the person of her friend and advocate is a potential conflict of interest. It seems as though Bob had plenty of dealings with the case manager and her Supervisor, representing her through them and their commitment to denying her treatment, but it would be a conflict of interest to assist me in wanting her civil and human rights protected. I see the conflict.
Second, I attempted several times to get OAC to fill the role of Tracey’s lawyer. As of late August, he had still not offered those services. Although I asked Bob to let me know if OAC was going to get more involved, I never heard from him again. I emailed Bob directly about Tracey’s situation on 8/22/06, 8/27/06, 8/29/06, 9/6/06, 9/15/06 and lastly on 12/14/06 to tell him she had died. I cc’d him emails regarding Tracey’s situation 3 times on 8/22/06. I also cc’d him on 8/23/06, 8/26/06, 9/5/06, 9/6/06, 9/13/06, and 9/15/06. I Never heard from him until 17 working days after I submitted a grievance on behalf of my deceased friend on 1/10/07. On 2/5/06 Bob wrote “Sorry for my delay in responding. I will have a decision for you soon. Bob”
I didn’t hear from him until 69 days after submitting the grievance, and 43 days after he told me he’d give me his decision soon. More on that to come...
Thirdly, Multnomah County didn’t exclude me from participation. I quit that ISP team on 9/6/06, the same day Multnomah County mailed me a letter saying the ISP team had voted me off the team. I received the letter on 9/7/06, and have the dated envelope in my possession. On the 6th I emailed the case manager and cc’d Bob “In no way shall it be construed that I plan to stop advocating for my friend’s rights as a human being, but be it known that I have been advised to end my relationship with this ISP team which has willfully and consciously chosen to neglect her medical needs and human rights.”
6.) OAC did provide information to Mr. McDonald on how to effectively advocate within the ISP rules but did not advise him to take any particular action.
The information provided to me was a copy of the OARs around the responsibilities of the Healthcare Rep. back on 6/15/06. What Bob should have been doing was providing the case manager’s supervisor information on staying within the ISP rules. Bob did not respond at all when I communicated that Multnomah County was trying to have me voted off the team because I was in disagreement when critical health care decisions were being made. This is in direct violation of OAR 309-041-1600 and 309-041-1590. There was a missed opportunity for systemic advocacy if ever I saw one.
7.) Mr. McDonald repeatedly pressed OAC to reveal confidential information about [Tracey] that OAC was neither ethically nor legally authorized to release.
Bob must be alluding to my questions regarding OAC policies and procedures asked of Kathy Wilde on 5/4/06 which were never answered. On 7/14/06 I did ask Bob what he could do to get 3 answers to questions that might explain what was going wrong. I never asked him to pass the answers on to me. Then there was the question of representation on 8/20/06. Pretty >“repeatedly pressing” stuff...
8.) OAC did open a file for [Tracey], investigated the claim of abuse and neglect and took appropriate action to assure that [Tracey’s] rights were honored.
The investigation didn’t include interviewing the 3 people who knew her the best regarding any claims. Tracey’s rights were never honored the whole time that information was withheld from her friend and advocate, an active member of the ISP team, by certain other ISP team members.
9.) It would be inappropriate to set out those actions in this letter because of confidentiality concerns ... [and] a grievance may be filed if there is dissatisfaction regarding the quality or extent of the services provided or if there is a belief that Oregon Advocacy Center has failed to fulfill one or more of its legal obligations.
If the actions that OAC takes are confidential, how in the world would an individual and/or their representative know whether or not they are dissatisfied with the quality or extent of their services? If a person who files a complaint about abuse or neglect cannot know how an investigation was conducted or who was questioned during the course of this so-called investigation (although they do know that no question was asked of them), how would that person know the quality or extent of services provided? If the findings of investigations are confidential, what’s the point of the protection and advocacy agency? Who does know what actions OAC takes or doesn’t take and what their findings are? Does DHS, protective services, the medical review board, Multnomah County’s lawyer hear what actions OAC has taken and what their findings are?
10.) Having reviewed Mr. McDonald’s complaint and OAC records, I find that OAC provided high quality investigation and advocacy in the matter of [misspelled Tracey's last name] and fulfilled its legal obligation in her case.
In the interest of getting through this process, I want to state that Bob’s misspelling of Tracey’s name should not further delay her grievance being heard.
11.) Since Mr. McDonald has indicated a desire to appeal this matter to the OAC Board of Directors, I will refer the matter to the Board’s Grievance Committee.
I didn’t indicate a desire to appeal. Bob had not written a decision until 3/20/07. Until that date there was no “written determination” from the executive director to appeal. After not hearing from him in 17 working days I forwarded this grievance to the Board Grievance Committee. I mailed a hard copy of Tracey’s grievance to the grievance committee, including the actual emails on 2/5/07. It was signed for by Emily Arion on 2/6/07. If that package was opened when received 50 days ago, I’d like to know who opened it, and where it’s been for the last 50 days. I will resend the grievance if it’s been opened.
I’d also like to know why on the OAC website it says the Executive Director will issue a written determination within 15 working days when it took 17 working days to hear anything at all. And why the grievance wasn’t forwarded directly to the Board’s Grievance Committee upon receipt on 2/6/07. It appears that Bob has withheld this forwarded grievance from the board’s grievance committee and not acknowledged that it was mailed directly to the Board. The Board has already had 50 days to deal with the grievance The OAC website says they will make a final determination within 30 days. Does Bob even understand the grievance procedure or is it that he doesn’t take this grievance procedure seriously?
12.) I recommend that the Committee ask Mr. McDonald if he wants to provide any more information but then consider all OAC information so as not to breach our obligation of confidentiality to [Tracey]. As stated above, Mr. McDonald has no authority to have access to any information in OAC records regarding [Tracey]. I recommend that Mr. McDonald be informed of the Committee’s final decision without the disclosure of any confidential information.
I also have a recommendation. If Bob is attempting to protect those responsible (including possibly himself) for the way Tracey died, he needs to understand it’s time for accountability. My recommendation is that the Board Grievance Committee takes into account that a precedent has been set that allowing a person to die without weighing that decision against best practice is ok in Oregon regarding people who have profound disabilities, including being non verbal. Tracey’s life was looked at as expendable due to personal bias and for the convenience of people who should have protected her. I further insist that an independent investigation into the facts of what happened to my FRIEND take place following whatever the Board Grievance Committee decides.
Sincerely,
David McDonald
Saturday, March 31, 2007
Monday, March 19, 2007
caPTAiN DandY Has Left The Building
A little over a year ago, on my 50th birthday, my wife and I went to see a Psychic Medium on a whim. We were visiting Cannon Beach at the Oregon coast, and checking out art galleries etc. when we saw a sign for a Medium. We decided it would be interesting to ask her questions relating to our activism work.
What the woman told us made sense. She said we were very devoted to our work... perhaps too devoted. She suggested we bring more “joy” and “fun” to our work, and ease up on the serious approach she sensed we were currently taking. At the time it seemed like some kind of wake up call, and we began talking about what she had said.
Later that evening sitting on the balcony of our hotel room I came up with an idea. I was going to create a fun and joyful activist name for myself. How I came up with CAptaiN dANDY I don’t exactly remember. My wife decided Magenta would be her new name based on one of the Medium’s reading of her aura.
In that last year I have truthfully experienced little joy or fun. It’s actually been one of the most painful and saddest years of my life. I’ve become acutely aware of what I already knew on a lesser level. The system people with disabilities are living in is WHACKED!! I’ve known for a while that Oregon’s, service delivery system was unfair, inequitable, and inaccessible, now I see it’s more of a nation wide problem. Of course that does little in making me feel better, but I’ve also learned that there are folks all over this country equally unwilling to be silenced by those who seek the status quo.
I’ve decided to let caP d. hit the road. This work is far too important to me to allow a fun name get in the way of my message. FIX THIS MESS NOW!
What the woman told us made sense. She said we were very devoted to our work... perhaps too devoted. She suggested we bring more “joy” and “fun” to our work, and ease up on the serious approach she sensed we were currently taking. At the time it seemed like some kind of wake up call, and we began talking about what she had said.
Later that evening sitting on the balcony of our hotel room I came up with an idea. I was going to create a fun and joyful activist name for myself. How I came up with CAptaiN dANDY I don’t exactly remember. My wife decided Magenta would be her new name based on one of the Medium’s reading of her aura.
In that last year I have truthfully experienced little joy or fun. It’s actually been one of the most painful and saddest years of my life. I’ve become acutely aware of what I already knew on a lesser level. The system people with disabilities are living in is WHACKED!! I’ve known for a while that Oregon’s, service delivery system was unfair, inequitable, and inaccessible, now I see it’s more of a nation wide problem. Of course that does little in making me feel better, but I’ve also learned that there are folks all over this country equally unwilling to be silenced by those who seek the status quo.
I’ve decided to let caP d. hit the road. This work is far too important to me to allow a fun name get in the way of my message. FIX THIS MESS NOW!
Wednesday, March 14, 2007
Euthanasia Story
This is a true story that must be told. There are people who have gone to great lengths to suppress the information herein. What I hope to do is compel those reading it to join with me in demanding accountability from the responsible parties. An investigation independent of Oregon’s Protection and Advocacy agency is needed to decide exactly who the responsible parties are.
In early April 2006 I found out that a close friend of mine had stage 3 colon cancer. She had a profound developmental disability and was non-verbal. In order for critical health care decisions to be made on her behalf, she needed representatives who knew and cared about her to gather and interpret medical information and weigh all her options. An Advocacy Team was assembled including myself, two other staff members from her day program (who knew her well), and her Individual Service Plan (ISP) team. This consisted of a management staff representative of the day program provider (who saw her a few times a year), the owner of her foster home (who supervised her direct caregiver) and a county case manager (who was assigned my friend a few months earlier, and didn’t know her). A close friend of the day program representative was brought on board to act as health care representative (who didn’t know my friend prior to her diagnosis). We all met and decided that the case manager would look into what was covered under her health plan, the health care representative would get the medical record and a 2nd opinion. She committed to providing these documents to the team as soon as she got them. I said that I would look into treatment options. Without any of this being accomplished, other than the information I shared about diet and exercise being critical, she was placed in hospice about two weeks later.
Following that initial meeting where I and another Advocacy Team member voiced our opinion that treatment should likely occur, our participation in decision making was apparently no longer desired. Decisions were made without our input and we felt we were being regarded as tokens. Instead, I joined her ISP team as her friend and advocate with no objection from any other ISP team member, and acknowledgement that it was appropriate for me to fill this role. From the beginning I insisted that in order to responsibly represent my friend in making decisions about her health care, we needed to see the medical record, the 2nd opinion, and make sure we all knew what her options were. The rest of the ISP team was more interested in allowing her to die without any medical “interference.” In fact, in early June, without access to any medical record, I was asked by the day program representative to sign a form that would indicate that I agreed to refusing treatment – I declined.
I complained of medical neglect for months while my friend received no treatment. While I was researching diet and exercise, part of the team enrolled her in hospice and cancelled her home health aide; the case manager claimed she had no idea how that happened. While I was complaining of a service plan that didn’t address supports for her condition, the case manager scheduled a meeting to discuss a burial plan. While I complained of a team making decisions without having the medical record to look at, the Health Care Representative took a 10 day vacation to Greece, and the case manager took no action to get the medical record while she was gone. I had already contacted the Protection and Advocacy agency, but received no assistance from them in getting the medical record, even though I had alleged medical neglect. They could and should have gotten the medical record themselves by that time.
A consultation meeting with hospice that involved the entire ISP team only occurred after she had been enrolled in hospice for 2 weeks. This is supposed to happen before making the decision to elect hospice care. This “consultation” consisted of meeting with a hospice social worker and nurse who used what seemed to me like fear tactics to sell their services, including talking about going to a hospital as the indignity of being “loaded” and “hauled off” to an unfeeling and strange place that makes you “wait for hours” for care.
It was obvious that the ISP team would do anything to get me out of the picture and have my friend quietly fade away. My advocacy was characterized by the case manager’s supervisor as “disruptive” and “ancillary” to what the ISP team was doing (damn right), and he began trying to have me removed from my friend’s team. This is in violation of the Oregon Administrative Rule that says that the team can’t be changed when critical health care decisions are being made. He even went to the extent of trying to deceive the Protection and Advocacy agency and keep them out of the loop by changing their email address so they wouldn’t get the cc of his letter calling to remove me. I filed a grievance with the county developmental disabilities program manager. She declined to communicate with me except through the county’s lawyer. I began to receive letters on official county lawyer letterhead. I asked for my friend’s grievance to be heard by a grievance committee, which is provided for in the state’s administrative rules. I was told that only the program manager and her lawyer would talk to me and the meeting would take place in the county lawyer’s office.
At the end of July my friend was taken off hospice but still received no treatment. The reason given for this move was that she wasn’t eligible for hospice because she wasn’t homebound. The fact is, she had been attending her day program 5 days a week and taking the public lift to get there since a week after hospice had begun.
Finally, in early August, the medical record was made available by the Healthcare Rep. This was 4 months after her diagnosis and refusal of treatment by the other ISP team members. No 2nd opinion was included. What the Health Care Representative had been calling a 2nd opinion was an oncology consultation from a second doctor during the same hospital visit. I believe that no 2nd opinion was ever done. The doctor said that chemotherapy is the usual course of treatment and there were concerns about her communication and side effects. I discovered that the case manager and the day program representative had a meeting at the hospital with a social worker and decided then that she was incapable of chemotherapy. At the initial meeting back in early April, this was presented as a fact given to them by the doctors. I found that a hospice consultation was given, along with an in inaccurate reference to her being bed-bound and an opinion about her quality of life and disposition. There was no prognosis of 6 months as they had claimed. I also discovered that she had symptoms involving her intake and weight loss fifteen months earlier. In March an endoscopy had been recommended but wasn’t done.
A nurse from the Department of Human Services was assigned to the case and conversations about guardianship started. I complained to the Protection and Advocacy agency that the team was pursuing an inappropriate guardianship (I feared this was in order to put a “do not resuscitate” order in place). I never heard from the Protection and Advocacy agency what happened around the guardianship. I do know that when my wife went to the ARC to get information about pursuing guardianship ourselves, the ARC called the county developmental disabilities office and told them she had been there.
I had also called protective services to report possible medical neglect, but was told they wouldn’t investigate as long as the Protection and Advocacy agency was already involved. I now feel that the one regrettable mistake I made through this whole thing was in contacting the Protection and Advocacy agency, believing that she needed a lawyer. They never gave a clear answer as to whether or not they would even represent her. In the face of reams of evidence forwarded their way, the P&A did nothing that I am aware of. A well-documented trail of deceit, betrayal, delay and cover up of information continued until I finally left the ISP team, disgusted, in September.
She continued in her day program until late November, when it was announced that the cancer had spread and she was back in hospice. At 10:00 A.M. PST on December 14, 2006 my friend gave in to “pain killers” prescribed while she was on hospice care. I believe my friend was euthanized. I believe this was because she was unable to say “yes” or “no”. She was someone with a huge spirit and a small body. She was someone with a quiet demeanor and a profound developmental disability. In life she was easy to overlook, but the way she died will not be.
On January 10, I submitted a grievance with the P&A regarding their handling of my friend’s case. After not hearing from the executive director in 15 working days, I sent the grievance on to the board’s grievance committee. After not hearing from them after 30 days, I can only assume that my friend’s death and her life don’t merit their attention.
If you are wondering whether I can back up my claims here, the answer is YES. I have documentation that supports this true story and will share it selectively. What I am looking for in sending this out is feedback, advice, and legal assistance to ensure my friend’s death was not in vain. I also need help in getting as much exposure to this story as possible. My email is dawgoregon@aol.com, and I look forward to hearing from folks.
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In early April 2006 I found out that a close friend of mine had stage 3 colon cancer. She had a profound developmental disability and was non-verbal. In order for critical health care decisions to be made on her behalf, she needed representatives who knew and cared about her to gather and interpret medical information and weigh all her options. An Advocacy Team was assembled including myself, two other staff members from her day program (who knew her well), and her Individual Service Plan (ISP) team. This consisted of a management staff representative of the day program provider (who saw her a few times a year), the owner of her foster home (who supervised her direct caregiver) and a county case manager (who was assigned my friend a few months earlier, and didn’t know her). A close friend of the day program representative was brought on board to act as health care representative (who didn’t know my friend prior to her diagnosis). We all met and decided that the case manager would look into what was covered under her health plan, the health care representative would get the medical record and a 2nd opinion. She committed to providing these documents to the team as soon as she got them. I said that I would look into treatment options. Without any of this being accomplished, other than the information I shared about diet and exercise being critical, she was placed in hospice about two weeks later.
Following that initial meeting where I and another Advocacy Team member voiced our opinion that treatment should likely occur, our participation in decision making was apparently no longer desired. Decisions were made without our input and we felt we were being regarded as tokens. Instead, I joined her ISP team as her friend and advocate with no objection from any other ISP team member, and acknowledgement that it was appropriate for me to fill this role. From the beginning I insisted that in order to responsibly represent my friend in making decisions about her health care, we needed to see the medical record, the 2nd opinion, and make sure we all knew what her options were. The rest of the ISP team was more interested in allowing her to die without any medical “interference.” In fact, in early June, without access to any medical record, I was asked by the day program representative to sign a form that would indicate that I agreed to refusing treatment – I declined.
I complained of medical neglect for months while my friend received no treatment. While I was researching diet and exercise, part of the team enrolled her in hospice and cancelled her home health aide; the case manager claimed she had no idea how that happened. While I was complaining of a service plan that didn’t address supports for her condition, the case manager scheduled a meeting to discuss a burial plan. While I complained of a team making decisions without having the medical record to look at, the Health Care Representative took a 10 day vacation to Greece, and the case manager took no action to get the medical record while she was gone. I had already contacted the Protection and Advocacy agency, but received no assistance from them in getting the medical record, even though I had alleged medical neglect. They could and should have gotten the medical record themselves by that time.
A consultation meeting with hospice that involved the entire ISP team only occurred after she had been enrolled in hospice for 2 weeks. This is supposed to happen before making the decision to elect hospice care. This “consultation” consisted of meeting with a hospice social worker and nurse who used what seemed to me like fear tactics to sell their services, including talking about going to a hospital as the indignity of being “loaded” and “hauled off” to an unfeeling and strange place that makes you “wait for hours” for care.
It was obvious that the ISP team would do anything to get me out of the picture and have my friend quietly fade away. My advocacy was characterized by the case manager’s supervisor as “disruptive” and “ancillary” to what the ISP team was doing (damn right), and he began trying to have me removed from my friend’s team. This is in violation of the Oregon Administrative Rule that says that the team can’t be changed when critical health care decisions are being made. He even went to the extent of trying to deceive the Protection and Advocacy agency and keep them out of the loop by changing their email address so they wouldn’t get the cc of his letter calling to remove me. I filed a grievance with the county developmental disabilities program manager. She declined to communicate with me except through the county’s lawyer. I began to receive letters on official county lawyer letterhead. I asked for my friend’s grievance to be heard by a grievance committee, which is provided for in the state’s administrative rules. I was told that only the program manager and her lawyer would talk to me and the meeting would take place in the county lawyer’s office.
At the end of July my friend was taken off hospice but still received no treatment. The reason given for this move was that she wasn’t eligible for hospice because she wasn’t homebound. The fact is, she had been attending her day program 5 days a week and taking the public lift to get there since a week after hospice had begun.
Finally, in early August, the medical record was made available by the Healthcare Rep. This was 4 months after her diagnosis and refusal of treatment by the other ISP team members. No 2nd opinion was included. What the Health Care Representative had been calling a 2nd opinion was an oncology consultation from a second doctor during the same hospital visit. I believe that no 2nd opinion was ever done. The doctor said that chemotherapy is the usual course of treatment and there were concerns about her communication and side effects. I discovered that the case manager and the day program representative had a meeting at the hospital with a social worker and decided then that she was incapable of chemotherapy. At the initial meeting back in early April, this was presented as a fact given to them by the doctors. I found that a hospice consultation was given, along with an in inaccurate reference to her being bed-bound and an opinion about her quality of life and disposition. There was no prognosis of 6 months as they had claimed. I also discovered that she had symptoms involving her intake and weight loss fifteen months earlier. In March an endoscopy had been recommended but wasn’t done.
A nurse from the Department of Human Services was assigned to the case and conversations about guardianship started. I complained to the Protection and Advocacy agency that the team was pursuing an inappropriate guardianship (I feared this was in order to put a “do not resuscitate” order in place). I never heard from the Protection and Advocacy agency what happened around the guardianship. I do know that when my wife went to the ARC to get information about pursuing guardianship ourselves, the ARC called the county developmental disabilities office and told them she had been there.
I had also called protective services to report possible medical neglect, but was told they wouldn’t investigate as long as the Protection and Advocacy agency was already involved. I now feel that the one regrettable mistake I made through this whole thing was in contacting the Protection and Advocacy agency, believing that she needed a lawyer. They never gave a clear answer as to whether or not they would even represent her. In the face of reams of evidence forwarded their way, the P&A did nothing that I am aware of. A well-documented trail of deceit, betrayal, delay and cover up of information continued until I finally left the ISP team, disgusted, in September.
She continued in her day program until late November, when it was announced that the cancer had spread and she was back in hospice. At 10:00 A.M. PST on December 14, 2006 my friend gave in to “pain killers” prescribed while she was on hospice care. I believe my friend was euthanized. I believe this was because she was unable to say “yes” or “no”. She was someone with a huge spirit and a small body. She was someone with a quiet demeanor and a profound developmental disability. In life she was easy to overlook, but the way she died will not be.
On January 10, I submitted a grievance with the P&A regarding their handling of my friend’s case. After not hearing from the executive director in 15 working days, I sent the grievance on to the board’s grievance committee. After not hearing from them after 30 days, I can only assume that my friend’s death and her life don’t merit their attention.
If you are wondering whether I can back up my claims here, the answer is YES. I have documentation that supports this true story and will share it selectively. What I am looking for in sending this out is feedback, advice, and legal assistance to ensure my friend’s death was not in vain. I also need help in getting as much exposure to this story as possible. My email is dawgoregon@aol.com, and I look forward to hearing from folks.
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