No matter what Cogen has to say about his "love" for Portland, he's yet to talk about his "love" for people with developmental disabilities in Portland.

I love the video. Especially the tribute to Karol Collymore and all the thanks to Jeff, Karol and the other staff in the office who notarized the domestic partnerships. Makes me want to get notary public authorized!

Rather than characterize my comment as "snarking and bitching" (as you're known to do here on a regular basis) I'll tell you that I've been to several Commisioner's Meetings where I've spoken of the lack of oversite of the developmental disability program in Multnomah County.

Each time I've witnessed Cogan smile and nod in agreement while doing nothing to change things. How's that for "snarking and bitching"?

Oh yeah... I guess i forgot to mention his two staff members (Karol Collymore and Marissa Madrigal) who also take a blase approach to system reform.

So what exactly have you heard Jeff say regarding developmental disabilities Kari?

Marissa Madrigal here, Jeff Cogen's chief of staff. What David does not explain here is that our office DID respond when he contacted us. We researched his very sad concern and we offered guidance for how to proceed if he wished to pursue a complaint against Multnomah County with an independent third party. David, claiming the independent third party didn't like him, refused to do so.

Our office makes every attempt to assist those who call our office for help, whether their concern is a County issue or not. Over the last two years we've helped people who have needed emergency shelter, help fixing their tax bills, etc. We've received complaints about Multnomah County from our bee-keeping policy to our housing to our employees. We do the best we can to research, respond to and resolve the issues. But ultimately, there are some answers that the people we're trying to help don't want to hear, as David's comments in this thread show.

When Marissa says they "researched" my concern, she means she spoke to the county employees involved in denying my friend life saving treatment and their attorney (who tried to talk with my boss without my permission). In fact, here's how it played out back in July...

Dear Marissa,

It’s now going on 2 months since I first spoke to you about what I believe happened to my friend Tracey. That seems more than an adequate amount of time for you to get back to me with SOMETHING about where you or Commissioner Cogen’s office stands on this issue.

Thus far you have yet to ask me ONE question or for clarification on ANY THING I’ve sent you.

I agree Joseph. Talking about death during the Holiday Season can be depressing. Even if it's just a person with a developmental disability who you don't even know.

As always, a compassionate and rational response. David, your reaction struck me as inarticulate lashing-out, since you gave nothing to go on in terms of understand what issue/if there is an issue... sometimes it takes a lot of focused energy to make yourself understood in writing, esp. in a blog. Often I am having full-fledged responses within, but know I've not got time or am too lazy of inclination to write a full-bore, informative response. And so i fall to the emotive often. Peppered with soci theory and such, yes, but all too often lacking in current research, which garners the most respect.

Perhaps you would like to tell us what happened? I have loved ones with DD, and the hopes and worries of their families is poignant to me...

What more do you want to know?

Kotek and Gelser Selling Out

In some circles Tina Kotek and Sara Gelser are looked upon as up and coming stars of the Oregon Legislature. They’ve championed Carly’s law to protect children and they’ve put together a bill to create a registry of bad caregivers who won’t be able to work with vulnerable people in Oregon. They have a real penchant for wanting to protect some people. However; others they’re not quite as concerned about.

On 10/22/08 I sent the following email to Tina (my North Portland Representative) and cc’d Sara...

Dear Tina,

I was watching your hearing this morning when I noticed that you mentioned to one of the women testifying that one of your constituents had some concerns around what's happening with Carlee's (sp?) Law. I have a similar concern around the death of a 45 year old woman here in Portland. She definatly fell through the cracks of justice and ethics. I'm posting her story here, and would like to see your and Sara's comments about what happened to her. Thank you for your attention to this matter.

Sincerely, David

Euthanasia in Portland

<h2>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.</h2>

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.

<h2>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.</h2>

After hearing nothing from either of them, I emailed them again on 11/12/08...

Dear Tina and Sara,

This email is kind of difficult for me to write. But I believe that sometimes the hardest thing to do is not the most comfortable thing to do, so I'll take my chances trusting in your desires to see justice served.

I am aware that responding to a story like this one involves a level of courage most people don't have, because it involves truly looking into the facts of what happened. And looking into those facts involves questioning the decisions and motives of people you might not want to question. So we're either going to have "selective" investigations of abuse and neglect in Oregon, or we're going to investigate ANYONE who has medically neglected a person with a developmental disability.

I'm requesting that a real investigation into what happened to my friend be done. This means looking at Disability Rights of Oregon and Multnomah County Developmental Disabilities. I have the details of the slipperiness right here in my computer. I just need someone who cares to allow me to show them what happened. If this can happen to Tracey without any accountability, it can happen to countless others in our state. Please do the right thing.

Dave: why are you so pugilistic? Your opening line was like an angry adolescent who did not tell anyone what they needed to know so as to make informed responses... blaming the unknowing for your internalized dialog with yourself and your circumstance. We do not sit about of a day googling your name to find your circulations!

Chris's response was very very compassionate! And invited you to excite the interest you truly seek - especially if you are seeking discussion of an institutional structure that SHOULD be exposed and dialoged!

<h2>I was unaware that the question of; "what more do you want to know?" was pugilistic or adolescent. I thought it was a way to open dialogue and questions, but none have come forth.</h2>