Euthanasia in Portland

I first began circulating this true story on the internet on 3/14/07. Because this is all true, no one that I have named here has challenged my assertions. I believe that is because if this ever made it into court the responsible parties would be unable to spin their way(s) out of big trouble. They hope I’ll go away. I won’t.
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My name is David McDonald and I live in North Portland, Oregon What I’ve written here 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 ran other homes) 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. He quit that “team. 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, get a 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. Either that or they were directed by the P&A to do so. 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 full 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 Association for Retarded Citizens 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 my phone # is 503-285-1242. I look forward to hearing from folks.
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I finally received the E.D.’s “written determination” of the grievance submitted on behalf of Tracey on 3/20/07 following complaints to OAC from the disability community. 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 OAC board (or some different audience) other than 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 3/22/07. I don’t believe they will respond to it as requested.

Following that, 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” on my behalf.

Finally, I’ve pasted an email sent to the Chair and Vice Chair of OAC after not hearing from their “Grievance Committee”.

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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


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 and standard text. 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.

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 is Bob 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.
As for inappropriate behavior... that would be advocacy and telling the truth.

He responded on 8/21/06; “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.”

I replied on 8/21/06:
“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.”

This is loaded. First, Bob is saying representing Tracey in the person of her friend and advocate is a potential conflict of interest. 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 2/5/07 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. way back on 6/15/06. What Bob should have been doing by mid August 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 of neglect or abuse. 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 or their advocate 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, the protection and advocacy agency has no accountability. 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?

9.) 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. An added point of interest is that last week the US Senate found that there is no realistic way Alberto Gonzales could investigate his own actions. I tend to agree.

10.) 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’s “written determination”. Bob had not written a determination 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 back in February, I’d like to know who opened it, and where it’s been since February. 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 since February 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 his own grievance procedure seriously?

11) 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.

The committee has asked me nothing. 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
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Sent via email to Jan Campbell and Michael Bailey, Chair and Vice Chair of OAC on 5/16/07.

I wrote to you both on 3/22/07 in regard to a grievance I filed with OAC on behalf of my friend who died while a client of your organization. I asked for a response from you. I never received one.

It's now 40 working days later. Although Bob wrote on 3/20/07 that he was forwarding the grievance to your Grievance Committee I have heard nothing. According to your grievance procedure I should have heard something within 30 working days.

OAC has been in possession of this grievance since 1/10/07. If OAC's position is to ignore a grievance on behalf of someone who died under suspicious circumstances, I have to believe something is being covered up. I will continue to attempt to have it uncovered on Tracey's behalf.
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On 8/28/07, after hearing nothing from OAC, I wrote to 34 individuals and/or agencies who had expressed concern about this fiasco. I asked them to contact OAC, insisting that they follow their own grievance procedure. I had already contacted the Oregon State Bar to inform them that OAC (which is a pro bono agency funded by the OSB) had an ineffective grievance procedure which is a violation of OSB rules for pro bono agencies.

The very next morning at 9:25 AM I received the following in email: “Dear Mr. McDonald,
I would like to extend our Board's apologies that your hearing has been delayed so long. I would also like to offer you a hearing date of Thursday, September 6 at 6:00 pm at the OAC office. Please let me know if you can participate at that date and time.
Bob Joondeph”
That same day I was cc’d a letter mailed to OAC from the OSB. The letter stated that they would be reviewing OAC’s pro bono certification status. I wonder if either of those actions caused OAC to finally contact me.

On 8/30/07 I wrote an email to Jan Campbell which contained the following paragraph: “As I wrote to you on 3/22/07, I’d like to know who is on the committee to avoid any conflict of interest. For example, you, as an employee of Multnomah County are conflicted, because you work with two of the alleged perpetrators of medical neglect. Michael Bailey is conflicted as he has sent me scores of emails of a very personal nature, and would have this in the back of his mind in drawing any conclusions regarding the grievance. Your ED is not on the board, and is also involved in my allegations of neglect.”

I did meet with the Board Grievance Committee on 9/6/07. It consisted of Jan, Michael Bailey and a man named Mike Levine. Of course Bob was there. Apparently my concern about conflict of interest was of no concern to them. We talked for about 1 hour. They admittedly had not read my grievance but they had read their director’s response. They didn’t ask me 1 question regarding the evidence I have. I believe it was all a setup designed to satisfy others and/or keep them out of trouble with their funding. I must admit though... they were polite.

On 9/11 (interesting timing) I received their written “decision”. It looked strangely similar to their director’s “determination” back in March. With cold hard evidence that lying, manipulation, and sliminess was staring them in the face, they chose to circle their wagons around their director; abandoning truth and justice.

As for what will happen next; who knows? But I tell you, it aint over till it’s over.

He That Hath Ears to Hear, Let Him Hear

Convoluted messages from twisted mouths
Falling without grace
In the form of spittle and drool.
They are unaware that in their efforts of deception
They endanger themselves
And those they claim to love.

Will they ever lose sleep?
Or feel the fear of God?
I pity their piety, I see their blindness, I pray for their prey.

In another time tar and feathers were used
And in another came fire and brimstone
But this time is now
This time is forever
It cannot be erased
The eternal wrong.

More on Euthanasia

When you hear about 2 alleged renegade nurses ignoring the law and causing death, you have to wonder about how safe Oregon’s Death With Dignity law REALLY is.

When you read about the Oregon Board of Nursing failing to report these nurses to the authorities, you have to wonder how effective Oregon’s Death With Dignity law REALLY is.

When you find out that the Director of the Oregon Board of Nursing, (who is a big time proponent of assisted suicide) resigned when this stuff came to light, you have to wonder how monitored Oregon’s Death With Dignity law REALLY is.

When you learn that the Investigative and Compliance Program Executive (2nd in charge) within the Oregon Board of Nursing has been fired, you have to wonder how ethical Oregon’s Death With Dignity law REALLY is.

Ok, it’s not so much the law itself that is troubling, it’s the people implementing it. Does that put you at ease? Not me...
Disability activists have been saying for some time that this law has potential for big problems and this one is REALLY big. This from the Friday edition of the Portland Tribune...

Pressure increases on suspect nurses
Alleged players in assisted suicide may be prosecuted; others, too
BY PETER KORN
The Portland Tribune, Sep 7, 2007

Two Portland-area nurses who allegedly helped a dying cancer patient carry out her assisted suicide plan in 2005 are a step closer to facing criminal charges this week.
Last Friday, Oregon Department of Justice attorneys and Oregon state police investigators, after a preliminary investigation, turned their case files over to the Washington County district attorney for further investigation to determine whether criminal charges would be filed.

The assisted suicide, involving nurses Rebecca Cain and Diana Corson, came to light in July after a former employee of the Oregon State Board of Nursing told Gov. Ted Kulongoski about the case.

In nursing board documents obtained by the Portland Tribune, the nurses admitted to the nursing board that they had administered massive doses of phenobarbital suppositories and morphine to Wendy Melcher without physician approval as part of an assisted suicide plan.

Melcher died four days later, but the nursing board never reported the case to criminal justice authorities.
In July, Kulongoski instructed the state police and the Department of Justice to look into the case.

While Oregon’s Death With Dignity Act — the only such law in the nation — permits assisted suicide, it does so with severe restrictions. One of those is that only physicians can legally help patients end their lives.

According to Washington County District Attorney Bob Hermann, his office will probably take a few months to determine if charges should be filed against the two nurses.

If charges are filed, Hermann said, they probably would be for aiding a suicide, which is considered second-degree manslaughter. Hermann said that representatives of the Hillsboro police and the Washington County major crimes team met with state police last Friday to discuss the case.

Hermann said that prosecuting defendants for aiding a suicide could be difficult. Finding proof, he said, often is particularly hard.
Hermann also said that the fact that the case occurred in 2005 would make it difficult to put together a prosecutable case.
Neither Corson nor Cain had their licenses revoked by the nursing board. Cain was disciplined with a two-year probation, and Corson had her license suspended for 30 days.

The case may be only the first among many to be reconsidered for criminal charges after a report by the state Department of Administrative Services last week found multiple instances of the nursing board not reporting possible crimes by nurses to criminal justice authorities.

Administrative Services investigators were given access to nursing board case files and found cases of potential sex abuse, attempted rape and tampering with drug records by nurses that never had been reported to criminal justice authorities. Some were years old.

The report included a long list of recommendations for reforming the nursing board and was instrumental in the replacement of the board’s two top executives.
As of this week, state officials still were uncertain as to what to do with the unreported cases.

Suzanne Nelson, Kulongoski’s choice to head the nursing board as interim executive director, said this week that she expected the board to consider the unreported cases at its Sept. 20 board meeting. She also said that she would consult with Tom Cowan, the assistant attorney general assigned to the nursing board, about what to do with the cases.

Multnomah County District Attorney Michael Schrunk said Wednesday he had not heard from state authorities about the cases but that he intended to call the attorney general and nursing board about them.
peterkorn@portlandtribune.com
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Here are some of the questions going through my mind about this, and possibly several other similar situations:

1) We have at our disposal many different pain relieving
medications that are proven to work very well. Was this
patient medicated properly?
2) We also have many medications to treat depression and
other mental health issues which may arise for someone
with terminal illness. Psychologists can also be helpful. Was this explored?
3) Is it worth being dishonest if you have nothing to hide?
Karma is for real.
4) Are slippery slopes good for much else beside sled riding?

A Personal Attack!

One of the more interesting manipulations of the American Psyche involves the use of the term “Personal Attack” when people who make decisions for others wish to do something that is wrong without having to deal with being accountable for it. If they are called to task for causing harm they will often accuse you of personally attacking them, or suggest that you are “playing the blame game”. I believe this is meant to make you feel as though you are overreacting to the wrong they have done, and is often indicative that they intend to continue doing what it is you called them to task for in the first place.

This may sound like a Republican strategy ( oops... there I go personally attacking the Republican party) but it’s not. It’s a trick used by many Americans from several walks of life. Lawyers love this sort of terminology. Politicians eat it up too. I personally think it’s a coward’s way of attempting to look like a victim, to either garner sympathy or make you leave them alone. It has virtually nothing to do with respect.

As I’ve said before, I’d much rather have someone confront me directly than have them stab me in the back. It seems to me it’s these “personal attack” philosophy promoters who are also very adept at wielding the hidden knife. I believe “niceness” is destroying our society.

“This is the way the world ends
This is the way the world ends
This is the way the world ends
Not with a bang but a whimper”
T.S. Elliot

Six Feet of Water... Part 2

What the hell is Red Cross doing? I found this story on the People's Hurricane Relief Fund website. It sickens me.




------------------------------------------------------------------
American Red Cross has an estimated $60 million in funds to help Katrina victims recover. It's called the "Means to Recovery" program. It is supposed to allocate a maximum of $20,000 per family to cover occupational costs, housing, furnishing, personal living needs and health costs. This could cover anything from eyeglasses to a used vehicle to education costs.
Haven't heard of it? Neither have most Katrina-Rita victims who need the assistance. The same agency that spends millions of advertising dollars begging for money won't provide free public service announcements to alert struggling hurricane survivor families that relief is available.
Red Cross is trying its best to keep the program a secret and discourage the survivors who find out about it. ARC chapters in areas such as Jackson, Mississippi have lied to survivors, denied the existence of such a program and is attempting to penalize recipients who tell others about it. In other areas, people are routinely denied assistance based on the whims of case managers who arbitrarily decide if a person will get assistance or how much of their needs will be addressed.
In Baton Rouge last month several Katrina-Rita survivors were burned out of an apartment complex when lightning struck. Red Cross offered them a hotel stay for two nights and then booted them out, saying that there was no other assistance available to people who had lost all of their possessions for the second time in two years. A PHRF staff member used his personal funds to house them for another night. Although "Means to Recovery" funds were available and needed, Red Cross staffers refused to let these double victims know about it.
Buried in the Red Cross website is a reference to the program that stresses that "this is not an entitlement program." In other words, survivors in need don't really have a right to the funds allocated to help them. However the agency seems to feel very much 'entitled'' to hold on to the funds for its own purposes. There is mean-spiritedness in the way Red Cross and some other agencies deal with Katrina survivors.
The feeling is that folks should be 'over it' by now, which is neither the reality nor a reasonable expectation for those whose entire lives have been forever changed by a disaster. Many Red Cross workers have not hidden their low opinion and hostile disposition toward hurricane victims, especially those of color. It has demonstrated an incredible lack of compassion and a proprietary attitude toward the actual funds it has been entrusted to distribute. Of course if you check their national website,
In Baton Rouge last month several Katrina-Rita survivors were burned out of an apartment complex when lightning struck. Red Cross offered them a hotel stay for two nights and then booted them out, saying that there was no other assistance available to people who had lost all of their possessions for the second time in two years. A PHRF staff member used his personal funds to house them for another night. Although "Means to Recovery" funds were available and needed, Red Cross staffers refused to let these double victims know about it.
Buried in the Red Cross website is a reference to the program that stresses that "this is not an entitlement program." In other words, survivors in need don't really have a right to the funds allocated to help them. However the agency seems to feel very much 'entitled' to hold on to the funds for its own purposes. There is mean-spiritedness in the way Red Cross and some other agencies deal with Katrina survivors. The feeling is that folks should be 'over it' by now, which is neither the reality nor a reasonable expectation for those whose entire lives have been forever changed by a disaster.
Many Red Cross workers have not hidden their low opinion and hostile disposition toward hurricane victims, especially those of color. It has demonstrated an incredible lack of compassion and a proprietary attitude toward the actual funds it has been entrusted to distribute. Of course if you check their national website, you will notice a 'diversity problem' with their staff leadership. Seems like ARC has several levels of issues that limit its value to people who are not White or wealthy.
The People's Hurricane Relief Fund and Oversight Committee and its allies are calling on the American Red Cross to:
1.)Immediately and aggressively notify the public about the "Means to Recovery" program
2.)Disburse the funds to Katrina-Rita Survivors within 90 days
3.)Account for all funds received for "Means to Recovery"
4.)Account for all funds disbursed on a dollars-to-demographics neighborhoods basis
5.)Begin to treat Black Survivors with dignity, compassion and respect
If none of the above are possible then Red Cross must give the money to an agency which can operate in a fair and competent fashion.

WHAT YOU CAN DO
We are calling on people of good will across the nation to help force Red Cross to do the right thing and do it NOW!

Here are some things you can do:
1.)Use all forms of communication to let people in your area know about the American Red Cross "Means to Recovery" program; be sure to include the phone numbers of the chapter in your area.
2.)Alert all kinds of civic, political, faith, fraternal, professional and other groups to the problem and have them join in a solidarity movement to address this problem.
3.)Hold press conferences and protest actions at the local offices of Red Cross
4.)Flood the offices with phone calls, faxes, letters and e-mails demanding to know, what is available and why they are making it difficult for survivors to receive these funds. Is the money earning interest somewhere? Will the interest go to survivors? What happens to the money if survivors don't use it?
American Red Cross National Headquarters, 2025 E Street, NW, Washington, DC 20006
Phone: (202) 303-4498 or the Donation Hotlines: 1-800-REDCROSS (1-800-733-2767) / 1-800-257-7575 (Español).
You can ask for Mark W. Everson, President and CEO or Bonnie McElveen-Hunter, Chairman (sic) of the American Red Cross.
5.)Help the PHRF and its allies call for a federal, congressional or criminal investigation into the practices of groups such as Red Cross and United Way, who have received millions in the name of Katrina-Rita survivors, but require those in need to run a gauntlet to get even partial assistance.
6.)Join us at the International Tribunal on Hurricanes Katrina and Rita in New Orleans August 29 –September 2nd where the crimes against the people of the Gulf Coast before, during and after the hurricanes will be discussed. Help us petition the United Nations and the International Red Cross to send teams to investigate the matter. Join the PHRF in a call for a tangible system of accountability for all public and private agencies or offices that are withholding resources given for Katrina relief.
7.)Help us petition the United Nations and the International Red Cross to send teams to investigate the matter.
8.)Join the PHRF in a call for a tangible system of accountability for all public and private agencies or offices that are withholding resources given for Katrina relief.

Six Feet of Water in the City of Evangeline

I’ve been bouncing back and forth between sadness and anger this morning; the 2 year anniversary of Katrina devouring the Gulf Coast. New Orleans was my favorite city in the world. I’m sad and angry because that great city and her people (mostly low income black folks) continue to go largely unattended to by the US Government in the 2 years since. Was Kanye West inaccurate when he proclaimed; “President Bush doesn’t care about black people”? I’d have to say he hit the nail on the head when looking at what the Bush administration has done to put that city back together again.

Did you ever have a chance to visit New Orleans prior to its’ destruction? I went there twice when I was in my roaring twenties. Mardi gras remains as the greatest memory I have of partying in my entire life. But it isn’t just the revelry that has stayed with me since my visits way back when, it’s the all that the Big Easy was.

Po Boy sandwiches, Dixie Land Jazz, Mark Twain, the Muddy Mississip, the street cars, the Doobie Brothers, Buster Holmes’ (red beans and rice), Louis Armstrong, voodoo, coffee with chicory, the Times Picayune, the old Southern homes with their tall ceilings, the Neville Brothers, grits, the list goes on and on. Who’d have thought it could all be wiped out by a storm?

When Randy Newman penned the lyrics to “Louisiana 1927” sometime around 1990, I don’t think he was envisioning what would happen some 15 years down the road. What really gets me is that as far back as 1926 (the Mississippi overflowed its’ banks the year before the Big Flood) it was known that the city would eventually flood beyond repair... it was just a question of when. I’ve pasted those lyrics below, in honor of this sad date in US history.

“What has happened down here is the wind has changed
Clouds roll in from the north and it started to rain
Rained real hard and rained for a real long time
Six feet of water in the streets of Evangeline

The river rose all day
The river rose all night
Some people got lost in the flood
Some people got away alright
The river have busted through clear down to Plaquemines
Six feet of water in the streets of Evangeline

Louisiana, Louisiana
They're tryin' to wash us away
They're tryin' to wash us away
Louisiana, Louisiana
They're tryin' to wash us away
They're tryin' to wash us away

President Coolidge came down in a railroad train
With a little fat man with a note-pad in his hand
The President say, "Little fat man isn't it a shame what the river has
done
To this poor crackers land."

Louisiana, Louisiana
They're tryin' to wash us away
They're tryin' to wash us away
Louisiana, Louisiana
They're tryin' to wash us away
They're tryin' to wash us away"

Britney and Lindsay Caught Kissing in Rehab?

When is the last time you truly believed that our state was headed in the right direction? The kind and gentle way we Oregonians deal with societal issues and problems has gotten us how far? It might be that our niceness and abundant patience is the root cause that we continue to beg for crumbs from our elected officials in attempting to have a fair, just, and equitable state.

The education and health of our children will be significaantly funded through lottery and tobacco dollars. That doesn’t seem right to me somehow. At the same time the folks with REAL resources are able to continue getting wealthier through tax breaks and investment returns. The corporations own the politicians who make decisions at their bequest. It doesn’t matter which political party is at the reigns.

Nationally, we are preparing to elect a new president in a little over a year from now. Here in liberal Oregon we’re gearing up to work on getting Hillary or Barack in that office. I don’t believe Mrs. Clinton (with her history of sitting on the Walmart board) or Mr. Obama (who speaks out of both sides of his mouth regarding war) will do any more to fix this broken country known as America, than Rudy (see 911 rescue workers’ fates).
Nothing has changed much since the 60’s in the USA.

I’m certain this writing is looked upon as an angry rant, but is it? This is all common sense. You can choose to stick your head in the sand and pretend things are OK, but don’t expect me to join you. These are dangerous times. Whether or not you want to own your place in history is up to you. You can move along looking out for Number One, or start speaking out about the WRONG you come in contact with daily.

My name is David McDonald, and I approve these words.

How Important Are You? 2007 Edition

In Oregon, as in the other 49 states, there is an unspoken criterion for how important one is and/or believes themselves to be. It’s not based on reality, but sometimes perceptions outweigh what is in fact real. For these reasons I’ve put together this brief social survey for readers of my blog to see how they measure up in 2007.

How Important Are You?

1.)Do you wear your cell phone on your belt?
2.)Do you use the phrase; “Having said that” more than once per day?
3.)Do you own BOTH a blue AND a red necktie?
4.)Are your shoes really loud when you walk on hard surfaces?
5.)Do you brazenly cheat at 4 way stop signs?
6.)Is your email set on “Out Of The Office Auto Reply” more than once per week?
7.)Do you say “cheers” instead of “thank you”?
8.)Do you arrive late for important meetings on purpose?
9.)Do you park on the line; taking up 2 spaces at the grocery store?
10.)When walking Pooch, do you leave the poop behind?
11.) Do you insist on being called “Doctor” because you have a Doctorate degree?
12.) Does someone else cut your grass?
13.) Do you hang certificates instead of art on your office walls?
14.) Do you own an electronic planner such as a Palm Pilate?
15.) Do your children watch movies in the car?
16.) Are you a member of any organization called a “Club”?

If you answered “yes” to:
10-16 Questions-You are important enough to work in the Bush administration
6-10 Questions-You are important enough to have entitlement issues
2-6 Questions-You are important enough to get more important if you keep trying
0-2 Questions-You are important enough to not care how important you are

On Discrimination

I’m subscribed to a list serve around invisible disabilities through Google. It’s one of those where people communicate back and forth around issues they may have going on in their lives. For the most part, it’s impressive how these folks support and help each other with real life problems they face. I don’t contribute much because I often feel like a bit of an outsider.

However; I couldn’t keep my trap shut this morning when I read an exchange around discrimination. Actually, it began yesterday when someone new to the group wrote about her frustration with what she feels has been neglect regarding her brain injury diagnosis. She ended her message asking the group if they believe they suffer from discrimination.

What got me going was a reply sent from one of the other participants. He wrote that he feels discrimination frequently from people in his community. He wrote that people look at him and think he’s “a retard” although he claims to have an IQ of 135. When I read that sentence I could feel the hair on the back of my neck rise. I knew immediately that it was an appropriate time for me to weigh in on things.

I wrote to him; “I believe that in order to rid society of discrimination toward folks with disabilities, we have to start in our own back yard. People with cognitive disabilities ("retards" as you say) are no less viable people than folks with IQs of 135. Until ALL people with disabilities treat EACH OTHER as equals in their communities, there's not much reason to hope that the rest of the population will stop discriminating.”
David

I don’t know how this guy is going to receive what I wrote, but I felt that it had to be done. What he wrote demonstrates to me that we have a long way to go in realizing we’re all in this thing called life together, and quoting the Reverend Doctor Martin Luther King Junior; “Whatever affects one directly, affects all indirectly. I can never be what I ought to be until you are what you ought to be. This is the interrelated structure of reality”.

The Price of Justice

I had my bi-yearly checkup with my Dr. yesterday. She is aware of the struggle I’ve been in, attempting to see that accountability for the death of my friend is brought to light. She also knows that this struggle has taken its’ toll on me, both physically and emotionally.

She listened attentively to an update of where things are at in my efforts to have an investigation done which would expose the medical neglect Tracey was subjected to prior to dying. Then came the question... “Have you seen “Sicko”?” I realize it’s probably hard for this woman of conscience to hear about my efforts knowing there’s nothing she can do to help, and she may have wanted to change the subject.

We discussed the movie for a minute or 2, agreeing that the medical system in America is broken. Then she looked at me with genuine sorrow in her eyes and said; “You know... you’re not going to win this thing”. I answered; “I can’t let it go. I believe a dangerous precedent has been set that it’s ok in Oregon to allow profoundly disabled people to die without thoroughly weighing treatment options against medical records, second opinions, and best practice. It’s not just about Tracey”.

We then had a talk about the stress involved in this situation, and the effects it’s had on me physically. She told me that it would be to my personal benefit to just let it go, saying; “This isn’t the first time you’ve seen this sort of thing, and it won’t be the last”. I’m certain she’s right on both counts, but I told her; “I think that I’m SUPPOSED to speak out when I see injustice. I think that’s why God put me here”.

She just kinda shook her head a bit and upped the dosage of my Hypertension med.

Can they Even DO THIS in Oregon??

Have you ever gone to a job interview where everything seemed to go perfectly... the people you meet with seem to genuinely appreciate your skill set, the job pays well, you’ll be doing exactly the kind of work you’re interested in, with a combination of autonomy, teamwork, and intrinsic reward you’re after? Then the bomb drops. They hand you an application at the end of the interview, asking you to fax it back to them after it’s completed.

You get home, look the ap. over, and see this at the end of it:
----------------------------------------------------
PLEASE READ THE FOLLOWING CAREFULLY BEFORE SIGNING THIS APPLICATION:
[Employer] is an equal opportunity employer and does not discriminate on the basis of race, religion, color, sex, national origin, age, sexual orientation, political affiliation, marital status, disability or veteran status.

Interviews are given on a competitive basis, using job-related factors, after a written application has been received and reviewed. Because of the large number of applications received, not everyone who applies for a vacant position will be interviewed.

I certify that I have answered truthfully and have not knowingly withheld any information relative to my application. I understand that any misrepresentation or material omission of this application will result in my being eliminated from further consideration. I understand that, if accepted for employment, any misrepresentation or material omission which becomes known to [Employer], will result in immediate termination of my employment.

I authorize all previous employers and supervisors, including all persons with and for whom I have worked, to give [Employer] representatives any and all information regarding me and my previous employment. I release [Employer], and all previous employers and supervisors from liability for any damages that may result from furnishing information to [Employer].

In submitting this application for employment, I also authorize investigation of all matters which [Employer] deems relevant to my qualification for employment, including specifically a criminal history check, and I release from all liability any persons or employers supplying such information, and I also release [Employer] from all liability which might result from making the investigation.

I understand that, if selected, I will be required to provide proof of my identity and my legal right to work in the United States prior to actual employment with [Employer].

I understand that [Employer] is a Drug Free Workplace and that my employment is subject to the satisfactory results of a mandatory chemical screen test. I agree to conform to all rules and regulations of [Employer] as they presently exist or are later modified.

In consideration of my employment, I agree to conform to the instructions, rules and policies of [Employer]. My employment and compensation can be terminated at any time, with or without cause and with or without notice, at the option of either the company or myself. I agree that any disputes arising from my employment or termination of my employment will be resolved under the open door procedure that is in effect in the employer's handbook/policy manual. I understand that no representative of the company has any authority to enter into any agreement for employment for any specified period of time, or to make any agreement contrary to the foregoing.


Signature: Date:

----------------------------------------------------------
I don’t know about you, but I don’t want the government reading my email, don’t want the mark of the beast tattooed on my forehead, and don’t want to sign away my rights.

The HIPPA in the Living Room

Found this interesting piece on the internet yesterday. It’s great food for thought and dispels much of the faulty information floating around regarding what HIPPA is SUPPOSED to be about. There are those in our state who use it as a means for avoiding accountability...
-------------------------------------------------------

IS HIPAA PROTECTING PATIENTS OR PROVIDERS?
An article in the New York Times explains that because the HIPAA laws are so technical, they are being misunderstood and misinterpreted.

The article tells the story of Gerard Nussbaum was told he could not stay with his father-in-law while he was being treated after a stroke. He was then threatened with arrest while looking through his father-in-law’s chart to prove to the nurse she was about to administer a dangerous second round of sedatives. Both nurses claimed that access to his father-in-law and his father-in-law’s records were prohibited under the Health Insurance Portability and Accountability Act, more commonly known as HIPAA.

Many providers do not understand the law, have not trained their staff members to apply it judiciously and many are afraid of the fines and jail terms threatened by the Act, although no penalty has been levied in four years. Susan McAndrew, deputy director of health information privacy at the Department of Health and Human Service believes healthcare providers are hiding behind the HIPAA law. She states “Either innocently or purposefully, entities often use this as an excuse…They say ‘HIPAA made me do it’ when, in fact, they chose for other reasons not to make the permitted disclosures.”

Many experts distinguish between “good faith nondisclosures,” such as when a random person calls in for information about a patient and they cannot verify they should disclose the information and “bad faith nondisclosures,” like using HIPAA as an excuse to refuse to gather needed records to help public investigators with a child abuse case. Ms. McAndrew explains some of the do’s and don’ts of sharing medical information:

"Medical professionals can talk freely to family and friends, unless the patient objects. No signed authorization is necessary and the person receiving the information need not have the legal standing of a health care proxy or power of attorney. As for public health authorities or those investigating crimes like child abuse, HIPAA defers to state laws, which often require such disclosure. Medical workers may not reveal confidential information about a patient or case to reporters, but they can discuss general health issues."

Most on the spot decisions are made by staff who are more comfortable saying “no” than “yes” when they are not sure of the law.

So, if you need information about a friend or family member, unless that person objects, you have every right to that information. Don’t let the staff hide behind the HIPAA law and prevent you from helping a loved one manage their care.

WAKE UP!

6 young black men in Louisiana face over 100 years of combined prison time for their participation in a fight at school? Can you spell r-a-c-i-s-m??

I saw this story on Democracy Now! this morning, and had a hard time believing what I was seeing and hearing. You really have to check out the whole sordid story for yourself. There’s just too much information for me to write on this blog.

One of the very interesting aspects to the story is what the District Attorney did to keep one of the student’s parents from speaking out about this travesty. He simply put the parents on his witness list in order to silence them during their son’s trial.

This lawyer never actually called them up to the witness stand for questioning, but was well aware that by having them on the list they wouldn’t be allowed to talk about the trial. Slick, huh?

Where the hell has justice gone? Legal procedure trumps justice and fairness at every turn in this country these days. It’s no longer about right and wrong, our justice system is now about meeting minimal legal requirements. It’s not about guilt or innocence any more, it’s about being good at maneuvering and manipulating the system to avoid accountability. How and when did we get here?

I believe we need to re access what we want this country to look like It’s time to stop sitting back idly while injustice runs free in our cities, states, and nation. “We the people” must no longer allow the shameless, psychologically damaged, charlatans, who currently call the shots in this country, to continue doing so.

TRUTH

I watched the film “In My Country” this morning. The story line deals with the reconciliation process between the white Afrikaners and the native people of South Africa following the end of Apartheid. It got me thinking about the difference between the TRUTH and the truth.

These days you hear and see a lot of diplomacy and partial truth. It’s like people don’t want the weight of a guilty conscience on one hand, but don’t want to bring the TRUTH to light either. “Let’s not play the blame game” has become the mantra of both liberals and conservatives when accountability is discussed, at the expense of correcting wrongs, and ensuring they don’t happen again. Relationships, alliances, allegiances, fears, and insecurities seem to be the driving forces behind this kind of thinking, and I believe it’s more prevalent now than ever.

I’ve found in the last few years that most folks just don’t want to “know” the TRUTH. It’s also become clear to me that most people aren’t consciously aware of it. However; below this denial there is a quiet part which understands that if they “know” something is wrong, they might have to do something about it to make it right. This may involve taking an unpopular stand, and the risk of disapproval. Instead they choose not to “know”. People avoid the risk of disapproval and being ostracized at the cost of TRUTH. That really troubles me.

I know it may seem that I come across as brutal, hard, and judgmental, but I don’t care. I’ve heard this before. A lot of people don’t like my directness, but I’m not here to make friends. It’s just not a high priority. Maybe if I didn’t have the one friend that I have, I’d see things differently. I believe I’m here to tell the TRUTH when I see it, and I’ve learned that doing so upsets people.

Here’s some TRUTH:

1) The love of money IS the root of most evil.
2) Comfort is a state of mind if you have the basics.
3) You can be dumb and tell the Truth.
4) You can be smart and tell the Truth.
5) You cannot be afraid and tell the Truth.
6) Every time you harm another knowingly, you harm yourself.
7) Some people stay in the kitchen (in spite of the heat) for much longer than
they should.
8) Not everyone has your best interests at heart.
9) Knowing that #8 is TRUTH does not mean you are paranoid.
10) Today, when the mainstream media is reporting on something,
they're avoiding the report of something more controversial.
11) Usually #10 involves the TRUTH.
12) Humor is not always the answer or the means.
13) Anger is not always something to avoid in yourself or others.
14) “Always” is a loaded word, as is “forever”.
15) Silence can be deafening.
16) When you start being silent about things that matter you start to stop
living.

Deficiency Free Zone

I recently visited a friend of mine who is rehabbing at a convalescent facility in Portland following knee surgery. As I drove up to the address I was given, it hit me like a ton of bricks. A huge white banner was draped across the front of the building with 1 foot letters reading; “CONGRATULATIONS TO OUR STAFF FOR A DEFICIENCY FREE SURVEY!!” No way you’re gonna drive by that without taking notice. They don’t even need an address number.

Walking up to the front door, I found myself thinking that such a display doesn’t seem to take into account the fact that there are PEOPLE LIVING THERE. I’m certain it was either an attempt to drum up some business or true amazement that they are doing what they’re supposed to, but it just felt tacky to say the least.

When I went in the front door I was immediately met by the overbearing smell of feces. It seemed to be an old and permanent odor, not something I’d walked in on which was the result of a mishap of some sort. An aide approached me asking if she could help me. I told her I was there to visit my friend, and she volunteered to walk me to the room she was in. As we rounded the first corner, the smell went from feces to urine. Again; the smell was very strong. By now I was honestly feeling nauseous.

I got to my friend’s room just in time to see the Activity organizer at work. She had a list of questions she was asking in regard to hobbies and preferred activities. Following my friend’s "yes" or "no" answers to her questions she’d check the appropriate box on the list. Admittedly; I missed part of the inquisition, but I know that I didn’t hear any questions about going outside the facility. All the activities seemed to be site based.

When she had left and it was just my friend and I speaking alone, I asked if going into the community was a part of what she was offered for an activity. She told me it wasn’t. So it appears that my friend will be staying within the walls of this feces/urine smelling deficiency free zone until she goes home. The best part about it all is that she’s only supposed to be there a few more days.

Later that evening I was telling Magenta about my adventure at the convalescent center. Neither of us could figure out how they weren’t reprimanded for those nasty odors when the state did their check up. Neither of us could come up with an answer that makes sense. However; we did come up with an idea to drape a sign across the front of our house that would endear our neighbors to us. It would read...
“CONGRATUALATIONS TO US. NOT A COCKROACH IN THE PLACE!!”

An Unfair Advantage

On the front page of the early edition of Sunday’s Sports section in the Oregonian is an inflammatory article that speaks volumes of the mindset in America regarding people with disabilities. It’s about a sprinter named Oscar Pistorius who had both of his legs amputated at 11 months old. The concern is that his prosthetic legs may give him an unfair advantage if he is allowed to compete in the 2008 Summer Olympics in Bejjing.
Although the positions taken by those who oppose his participation seem unreasonable and discriminatory, it opens doors on several levels that bear discussion.

Let’s first explore the idea whether an unfair advantage even exists in this situation. Oscar runs “on a pair of j-shaped blades made of carbon fiber and known as cheetahs” according to the article. He was born without fibulas in his legs and defective feet.

Learning how to walk as a child must have been extremely difficult, but he did it. His non-disabled peers learned to walk on their own 2 legs and feet. As a father who watched his own child learn to walk, I can say that my daughter didn’t struggle much to gain this skill. Advantage... non-disabled kids.

As a child he must have been acutely aware of his differences from his peers. I’ve spoken to many people having life long disabilities who have described such awareness as painful and difficult to deal with. He got through it. Advantage...non-disabled kids.

In high school he likely wanted to attend dances with his peer group, and felt those adolescent male hormones raging through his body. Of course he would want to learn to dance in order to participate. That must have been a challenging task to say the least. Being interested in running, if he was allowed to be on the track team, perseverance and determination would surely have driven him. The other students on the team would have practiced hard, but I can’t imagine they practiced “as” hard.

Oscar is 20 now. He’s already proven himself to be significantly faster than the athletes he’s competed against in Paralympic competition. In fact, he recently came in second place against non-disabled runners in a race at the South African national championships. He admits it’s hard coming off the block at the start of races, and doesn’t get into his running rhythm until 30 meters. Rain and wind are also very challenging; much more so for him than the competition. Sound like an unfair advantage to you?

This isn’t only about Oscar. For far too long people with disabilities have been put in labeled boxes, having to “prove” they have a right to be fully included in our society. They are called names like “special” by the condescending masses who keep alive the notion of “them” and “us”. It’s a civil rights issue!

Students with physical and developmental disabilities are often kept in segregated classrooms throughout this country. Many of them only see their non-disabled peers at lunch and assemblies. If that’s not a set up for low self esteem, I don’t know what is. Does that seem fair?

People with disabilities STILL have to justify their need for support in order to live well in their community. If they somehow manage to outgrow a need, they risk losing other needed supports because they are too independent. It’s a balancing act that no one should have to deal with. Is that fair?

People with disabilities receiving Medicaid funds are limited to $2000 in resources. Once they cross that threshold they can lose their health insurance due to Medicaid rules. They often live in governmentally imposed poverty so they won’t have to give up that one critical support. Is that fair?

The numbers of people with disabilities who are unemployed, under employed, homeless, hungry, or incarcerated are ridiculously higher percentage-wise than their non-disabled counterparts. In fact, they face more blatant discrimination than any group of people in America today. Aint nothin’ fair about it!

There is certainly a lot more to be said about “unfair advantages” in regard to the struggles people with disabilities face in this country on a daily basis. I could go on ad infinitum about it. Instead I’ll leave it here for now, hoping that Oscar gets to kick some ass in 2008.

Disablism Day Reflections

Due to some pressing matters I haven’t been blogging much lately. I’ve been holding out and holding on... to hope. Hope that people will awaken to the fact that civil and human rights are continually violated in the US of A daily in the personhood of people with disabilities. Preaching to the choir? I hope not.

I was talking to a guy last week about why I am the way I am. There’s a part of me that places principles before relationships. I figure that I have a limited time here on Earth, and I want to affect as much positive change as I can before my life is over. It’s almost to a point of obsession. If that means people not liking me because I don’t whisper or play nice, so be it.

1.) It sucks that a smaller group of people control the government, the resources, the media, and the decisions in the name of the larger group. Why aren’t more people up in arms??

2.) YOU CAN defend a woman’s right to choose and abhor the euthanasia of innocent people.

3.) YOU CAN be a progressive person and believe that life is sacred and should be treated as such.

4.) BEST PRACTICE is ALWAYS BEST PRACTICE until BETTER PRACTICE becomes FACTUAL.

5.) Incremental change is for the fearful. Immediate change is for the brave.

6.) Bargaining and rationalizing is a foreign concept to TRUTH.

7.) I’d rather have someone speak to me incorrectly and treat me right, than to have someone speak to me correctly and screw me. (That seems to be the latest trend)

8.) The truth will make you sick BEFORE it sets you free.

Can't You Just Get Over It?

I'm finding more and more posts similar to this on the internet. Every time I read something along these lines, the knowledge that i'm doing the right thing is once again affirmed. Tracey was 45 when she died.
-------------------------------------------
MOVING ON
By JEFF ZASLOW


Paul Schaye doesn't like the expression "cancer survivor."


"It sounds like someone who washed up on shore," he says.


The 54-year-old Manhattan investment banker has incurable
gastrointestinal cancer. Statistics suggest he may have two years to
live. But he's living as hard as ever -- making deals at work, taking
trips with his wife, indulging his passion for extreme sports. Last
weekend, he biked 55 miles, ran 17 miles and swam 132 laps. "I'm a cancer
thriver," he says.


'Ironman' Paul Schaye
In another age, people would see Mr. Schaye as a man in denial, who'd be
better off resting, praying and getting his affairs in order. But today,
there are new cancer drugs with no debilitating side effects, and new
attitudes that have transformed people's view of the illness.


These breakthroughs explain why we're now having a national discussion
about how cancer patients should conduct themselves. Elizabeth Edwards
vows to stay on the campaign trail, despite breast cancer. White House
press secretary Tony Snow hopes to return to work after treatment for
colon cancer. Mr. Schaye sees these high-profile cases as proof that the
parameters of cancer have changed.


For some cancers, "we can now give people a pill so they can keep
enjoying their lives, without having the chemotherapy that can be so
disabling," says Mr. Schaye's oncologist, Gary Schwartz of Memorial
Sloan-Kettering Cancer Center. "Even with chemo today, we can minimize
side effects."


So far, research hasn't proven that a positive attitude can help patients
overcome cancer. But doctors do say that positive patients are often
easier to treat because they're more engaged in their care. There also
are benefits to maintaining a routine, including exercise.


Dr. Schwartz places Mr. Schaye in the top 5% of his patients in terms of
attitude. Mr. Schaye is aware of the grim procession ahead, the doctor
says. "But Paul is not depressed. He feels like he's controlling his life
and destiny."


Mr. Schaye, founder of the mergers-and-acquisitions firm Chestnut Hill
Partners, learned he had cancer in October. He sent friends a mass email
that began: "I have cancer, and for the record, it sucks.... I plan on
fighting and I am going to win."


By "win" he didn't mean cured, necessarily, or that he'll live to old
age. Yes, he hopes medical advances will be discovered before cancer
shuts down his organs. But he knows that's unlikely. So by winning, he
means "thriving." He recently ran a marathon. He ends his emails: "I am
an Ironman."


He's asking friends to join "Paul's Posse" to help raise money for cancer
research. Long before his diagnosis, Mr. Schaye supported cancer causes.
For years, he rode in the Pan-Massachusetts Challenge, a 192-mile bike-a-
thon for cancer research. He has cajoled 43 people, including Dr.
Schwartz, to ride this August. Their efforts are chronicled at
paulsposse.com.


One rider, his friend, Geoffrey Kauffman, speaks of "a confluence of
cancer in my life." Mr. Kauffman's mother is a 40-year breast-cancer
survivor who now has lung cancer. Other loved ones have had pancreatic
and ovarian cancers. Because Mr. Kauffman, a hedge-fund executive,
educated himself -- devouring medical journals, contacting researchers --
he is a great resource. "I have an ability to translate from doctor to
human," he says.


Mr. Schaye's posse has grown because his optimism is contagious, says his
wife, Gay. "It's hard to be down around Paul." The Schayes, who have no
children, are grateful Mr. Schaye's drug regimen has him symptom-free.
"We have no need to think about what terrible things might happen
tomorrow, when we can make another great memory today," says Ms. Schaye.


When Mr. Schaye and I spoke, he talked easily about his prognosis. The
only time he got choked up was when he considered his wife living on
after he's gone. "I feel like I'm abandoning her. She's losing her best
friend."


But he's staying upbeat. "My clock is ticking a lot faster than yours,"
he said. "But I've had a blessed life. And that life is continuing."


Write to Jeffrey Zaslow at jeffrey.zas...@wsj.com

Euthanasia Story Update

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.

-------------------------------------------------------------

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
---------------------------------------------------------------------------

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


________________________________


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;
-----------------
“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.”
-----------------

I replied on 8/21/06:
-----------------
“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.”
------------------

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

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!

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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