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.
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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.

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March 20, 2007

TO: DAWGOregon@aol.com
FR: Bob Joondeph, Executive Director
RE: Your email entitled: Grievance Against Oregon Advocacy Center on
Behalf of Tracey

I received an email from someone who identified himself only as “CaPtain D” from the email address DAWGOregon@aol.com. The email contained no other identifying or contact information. The email claims that its sender is “the only representative of my friend Tracey” who died on 12/14/06. The writer states:

"I don’t know everything the P&A did on my friend’s behalf, but I do know several things the P&A didn’t do that they should have as advocates involved with her case. This resulted in my friend being denied the opportunity to seek appropriate and timely treatment and to live for as long and as comfortably as she may have been able to. In fact, I believe the P&A was party to medical neglect and, subsequently, my friend being euthanized."

I recognize the author of this email as David McDonald who has claimed to be a friend of [Tracey] and who came into contact with her in the course of his paid employment. Mr. McDonald has never claimed to be [Tracey’s] relative or legal representative, and has never demonstrated that [Tracey] appointed or acknowledged him as her representative. Mr. McDonald made a complaint to OAC that [Tracey] was being subject to abuse and neglect.

Mr. McDonald asked that OAC represent him when Multnomah County excluded him from participation in [Tracey’s] ISP team due to alleged inappropriate behavior. OAC denied representation because Mr. McDonald is not eligible for OAC services. OAC did provide information to Mr. McDonald on how to effectively advocate within the ISP rules but did not advise him to take any particular action.

Mr. McDonald repeatedly pressed OAC to reveal confidential information about [Tracey] that OAC was neither ethically nor legally authorized to release.

OAC did open a file for [Tracey], investigated the claim of abuse and neglect and took appropriate action to assure that [Tracey’s] rights were honored. It would be inappropriate to set out those actions in this letter because of confidentiality concerns.

The OAC Grievance Procedure states that clients of OAC and those seeking our services may file a written grievance if they are unhappy with our services. Representatives and family members of those individuals may file a grievance on their behalf. As relevant to this situation, a grievance may be filed if there is dissatisfaction regarding the quality or extent of the services provided or if there is a belief that Oregon Advocacy Center has failed to fulfill one or more of its legal obligations.

Having reviewed Mr. McDonald’s complaint and OAC records, I find that OAC provided high quality investigation and advocacy in the matter of [Tracey’s last name misspelled] and fulfilled its legal obligation in her case.

Since Mr. McDonald has indicated a desire to appeal this matter to the OAC Board of Directors, I will refer the matter to the Board’s Grievance Committee. I recommend that the Committee ask Mr. McDonald if he wants to provide any more information but then consider all OAC information so as not to breach our obligation of confidentiality to [Tracey]. As stated above, Mr. McDonald has no authority to have access to any information in OAC records regarding [Tracey]. I recommend that Mr. McDonald be informed of the Committee’s final decision without the disclosure of any confidential information.

Sincerely,

Bob Joondeph
Executive Director
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Sent via email to Jan Campbell and Michael Bailey Chair and Vice Chair of OAC Board on 3/22/07 As of this going out, I’ve heard nothing from either of them.


Hi Jan and Michael,

I'm writing to you in your capacities as Chair and Vice Chair of OAC. I hope the Board Grievance Committee has not followed Bob's lead in dealing with Tracey's grievance. I'd like your response to this email before we go any further. I'd also like to know who is on the Board Grievance committee to ensure there are no conflicts of interest.

I received your Executive Director’s “written determination” of the grievance I submitted to him via welcome@oradvocacy.org as directed in the OAC grievance procedure. I did this on 1/10/07. On 3/20/07 he finally contacted me with his “written determination”. That’s 47 working days after I submitted it. On the OAC website it says I would hear from him with a “written determination” within 15 working days.

After not hearing from him on the 17th working day I mailed my grievance to the OAC Board Grievance Committee on 2/5/07. Later that day Bob emailed me, writing “Sorry for my delay in responding. I will have a decision for you soon. Bob”

On 2/6/07 Emily Avion, signed for, and took the grievance packet delivered by the U.S. mail. In the packet was information proving that OAC (in the person of Bob) had either failed to provide my friend with effective services, or wrongly denied her help. That was 42 days after receipt. On the OAC website it says the Board Grievance Committee would “issue a decision” within 30 days.

In Bob’s email of 3/20/07 he states “Since Mr. McDonald has indicated a desire to appeal this matter to the OAC Board of Directors, I will refer the matter to the Board’s Grievance Committee.” On the OAC website it says that the grievant, and not the Executive Director, can appeal the Director’s “written determination” within 30 work days of receiving the Executive Director’s “determination”. Further, the grievant must specify the reasons for disagreeing with the Executive Director’s “determination and must sign the appeal letter. Today is 2 days following my receipt of his “written determination.”

Understandably, I am confused as to what rules OAC and/or Bob is following here. If there are no time lines or processes involved in the grievance submitted on behalf of Tracey, I’d like to know before I can make an appropriate appeal to the Board Grievance Committee. I will not allow what happened to her to be taken lightly in the way others have. Who she was deserves much, much better.

I look forward to your reply.

Sincerely,

David McDonald


________________________________


This I will send to the OAC Grievance Committee if and when I hear back from the Chair and Vice Chair of the OAC Board:

The Executive Directors apparent “written determination” regarding the grievance is stated as:

“Having reviewed Mr. McDonald’s complaint and OAC records, I find that OAC provided high quality investigation and advocacy in the matter of [Tracey] and fulfilled its legal obligation in her case.”

I am in disagreement with this determination for a number of reasons.

First, The Executive Director’s determination omits one of the circumstances under which the grievance was filed:

“As relevant to this situation, a grievance may be filed if there is dissatisfaction regarding the quality or extent of the services provided or if there is a belief that Oregon Advocacy Center has failed to fulfill one or more of its legal obligations.

In fact, the grievance was filed under the following circumstances:

1. When there is disagreement about the decision of OAC not to provide technical assistance or advocacy services (wrongly denied help).

or...

2. There is dissatisfaction regarding the quality or extent of the services actually provided (did not provide effective services).

With these two points in question, I am in disagreement with several other errors, spins and what appear to be attempts to mislead the grievance committee as to the true events in this situation. These need correction before we move on from here. Bob’s words are bolded. Mine are in italics. They are as follows:


1.) I received an email from someone who identified himself only as “CaPtain D” from the email address DAWGOregon@aol.com. The email contained no other identifying or contact information.

The email I sent to welcome@oradvocacy.org on 1/10/07 was where the OAC website specifically states emailed grievances should be sent. The grievance is electronically signed David McDonald aka cAPTAIn dANDy. If the E.D. is suggesting he didn’t know caPtain Dandy was me, he is blatantly lying as you will see further into this.

2.) The email claims that its sender is “the only representative of my friend Tracey” who died on 12/14/06.

The grievance, in reality, says, “As the only representative of my friend Tracey who believed she should have treatment options explored with access to comprehensive information to guide the decisions made, I am filing this grievance on her behalf. Tracey died on 12/14/06, so I am well within the required 30 days for filing this complaint.” Bob’s English teacher must not have told him to quote the WHOLE clause in order to ensure that its meaning isn’t skewed. Bob’s lawyering teacher probably taught him otherwise.

3.) I recognize the author of this email as David McDonald who has claimed to be a friend of [Tracey] and who came into contact with her in the course of his paid employment.

Here Bob is suggesting that perhaps I wasn’t Tracey’s friend. This was something the case manager’s supervisor (who didn’t know Tracey) and the voc. Representative (who saw Tracey a few times a year) also tried to pull. If he had bothered to really do an investigation, he’d be told I was in fact very close to Tracey. Does Bob believe that Tracey was incapable of being or having a friend? Is he saying people you work with can’t be your friend? Whatever he’s saying I find insensitive and insulting. He knows that every meeting I attended regarding Tracey was on my own personal time, not company time. He should also know that the case manager wrote to me on 5/2/06; “I spoke with the other ISP team members regarding your request and it was decided that you become an ISP team member as Tracey's friend and advocate.”

4.) Mr. McDonald has never claimed to be [Tracey’s] relative or legal representative, and has never demonstrated that [Tracey] appointed or acknowledged him as her representative.

Tracey’s communication abilities would not allow her to acknowledge me or anyone else on the ISP team as her representative. I was on the team and recognized, as all team members, as her representative. Also, if Bob didn’t think I was a representative, he never would have met with me and my wife in his office and received information from me about Tracey. As for being Tracey’s “legal” representative, on the OAC website it doesn’t refer to “legal” representative in describing who can submit a grievance.

5.) Mr. McDonald asked that OAC represent him when Multnomah County excluded him from participation in [Tracey’s] ISP team due to alleged inappropriate behavior. OAC denied representation because Mr. McDonald is not eligible for OAC services.

In fact on 8/20/06 I wrote to Bob “I have one question for you, and would like a direct answer. Do you feel it is time that my friend and her one unpaid advocate receive legal representation from OAC?” This was 10 days BEFORE a letter was written by the case manager’s supervisor dated 8/30/06 telling me the ISP team had voted on my continued participation on that team.

He responded on 8/21/06;
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“Dear caP,
You deserve a direct answer. OAC will not provide you with legal representation. You are not eligible for our services and, in any event, our representing you would create a potential conflict of interest. Regarding Tracey, our office is considering whether to get more directly involved. We hope to make that decision by the end of business tomorrow.”
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I replied on 8/21/06:
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“Bob,
What I attempted to make clear in my letter is that I am the only unconflicted voice for my friend in this situation, and that OAC should be representing that voice. Not me, as Cap DanDy, but, apparently, the only person on the ISP team who can represent her interests as far as her civil and human rights. I'm not asking OAC to represent David McDonald or capTain D, I'm asking OAC to not allow a lynching to remove from the team any real voice that my friend has.
My request is that your office does in fact become totally involved as my friend's legal representation through what has happened, is happening, and will happen in her life. I would like to know by the end of business tomorrow if that is the case.”
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This is loaded. First, Bob says that representing Tracey in the person of her friend and advocate is a potential conflict of interest. It seems as though Bob had plenty of dealings with the case manager and her Supervisor, representing her through them and their commitment to denying her treatment, but it would be a conflict of interest to assist me in wanting her civil and human rights protected. I see the conflict.

Second, I attempted several times to get OAC to fill the role of Tracey’s lawyer. As of late August, he had still not offered those services. Although I asked Bob to let me know if OAC was going to get more involved, I never heard from him again. I emailed Bob directly about Tracey’s situation on 8/22/06, 8/27/06, 8/29/06, 9/6/06, 9/15/06 and lastly on 12/14/06 to tell him she had died. I cc’d him emails regarding Tracey’s situation 3 times on 8/22/06. I also cc’d him on 8/23/06, 8/26/06, 9/5/06, 9/6/06, 9/13/06, and 9/15/06. I Never heard from him until 17 working days after I submitted a grievance on behalf of my deceased friend on 1/10/07. On 2/5/06 Bob wrote “Sorry for my delay in responding. I will have a decision for you soon. Bob”

I didn’t hear from him until 69 days after submitting the grievance, and 43 days after he told me he’d give me his decision soon. More on that to come...

Thirdly, Multnomah County didn’t exclude me from participation. I quit that ISP team on 9/6/06, the same day Multnomah County mailed me a letter saying the ISP team had voted me off the team. I received the letter on 9/7/06, and have the dated envelope in my possession. On the 6th I emailed the case manager and cc’d Bob “In no way shall it be construed that I plan to stop advocating for my friend’s rights as a human being, but be it known that I have been advised to end my relationship with this ISP team which has willfully and consciously chosen to neglect her medical needs and human rights.”

6.) OAC did provide information to Mr. McDonald on how to effectively advocate within the ISP rules but did not advise him to take any particular action.

The information provided to me was a copy of the OARs around the responsibilities of the Healthcare Rep. back on 6/15/06. What Bob should have been doing was providing the case manager’s supervisor information on staying within the ISP rules. Bob did not respond at all when I communicated that Multnomah County was trying to have me voted off the team because I was in disagreement when critical health care decisions were being made. This is in direct violation of OAR 309-041-1600 and 309-041-1590. There was a missed opportunity for systemic advocacy if ever I saw one.

7.) Mr. McDonald repeatedly pressed OAC to reveal confidential information about [Tracey] that OAC was neither ethically nor legally authorized to release.

Bob must be alluding to my questions regarding OAC policies and procedures asked of Kathy Wilde on 5/4/06 which were never answered. On 7/14/06 I did ask Bob what he could do to get 3 answers to questions that might explain what was going wrong. I never asked him to pass the answers on to me. Then there was the question of representation on 8/20/06. Pretty >“repeatedly pressing” stuff...

8.) OAC did open a file for [Tracey], investigated the claim of abuse and neglect and took appropriate action to assure that [Tracey’s] rights were honored.

The investigation didn’t include interviewing the 3 people who knew her the best regarding any claims. Tracey’s rights were never honored the whole time that information was withheld from her friend and advocate, an active member of the ISP team, by certain other ISP team members.

9.) It would be inappropriate to set out those actions in this letter because of confidentiality concerns ... [and] a grievance may be filed if there is dissatisfaction regarding the quality or extent of the services provided or if there is a belief that Oregon Advocacy Center has failed to fulfill one or more of its legal obligations.

If the actions that OAC takes are confidential, how in the world would an individual and/or their representative know whether or not they are dissatisfied with the quality or extent of their services? If a person who files a complaint about abuse or neglect cannot know how an investigation was conducted or who was questioned during the course of this so-called investigation (although they do know that no question was asked of them), how would that person know the quality or extent of services provided? If the findings of investigations are confidential, what’s the point of the protection and advocacy agency? Who does know what actions OAC takes or doesn’t take and what their findings are? Does DHS, protective services, the medical review board, Multnomah County’s lawyer hear what actions OAC has taken and what their findings are?

10.) Having reviewed Mr. McDonald’s complaint and OAC records, I find that OAC provided high quality investigation and advocacy in the matter of [misspelled Tracey's last name] and fulfilled its legal obligation in her case.

In the interest of getting through this process, I want to state that Bob’s misspelling of Tracey’s name should not further delay her grievance being heard.

11.) Since Mr. McDonald has indicated a desire to appeal this matter to the OAC Board of Directors, I will refer the matter to the Board’s Grievance Committee.

I didn’t indicate a desire to appeal. Bob had not written a decision until 3/20/07. Until that date there was no “written determination” from the executive director to appeal. After not hearing from him in 17 working days I forwarded this grievance to the Board Grievance Committee. I mailed a hard copy of Tracey’s grievance to the grievance committee, including the actual emails on 2/5/07. It was signed for by Emily Arion on 2/6/07. If that package was opened when received 50 days ago, I’d like to know who opened it, and where it’s been for the last 50 days. I will resend the grievance if it’s been opened.

I’d also like to know why on the OAC website it says the Executive Director will issue a written determination within 15 working days when it took 17 working days to hear anything at all. And why the grievance wasn’t forwarded directly to the Board’s Grievance Committee upon receipt on 2/6/07. It appears that Bob has withheld this forwarded grievance from the board’s grievance committee and not acknowledged that it was mailed directly to the Board. The Board has already had 50 days to deal with the grievance The OAC website says they will make a final determination within 30 days. Does Bob even understand the grievance procedure or is it that he doesn’t take this grievance procedure seriously?

12.) I recommend that the Committee ask Mr. McDonald if he wants to provide any more information but then consider all OAC information so as not to breach our obligation of confidentiality to [Tracey]. As stated above, Mr. McDonald has no authority to have access to any information in OAC records regarding [Tracey]. I recommend that Mr. McDonald be informed of the Committee’s final decision without the disclosure of any confidential information.

I also have a recommendation. If Bob is attempting to protect those responsible (including possibly himself) for the way Tracey died, he needs to understand it’s time for accountability. My recommendation is that the Board Grievance Committee takes into account that a precedent has been set that allowing a person to die without weighing that decision against best practice is ok in Oregon regarding people who have profound disabilities, including being non verbal. Tracey’s life was looked at as expendable due to personal bias and for the convenience of people who should have protected her. I further insist that an independent investigation into the facts of what happened to my FRIEND take place following whatever the Board Grievance Committee decides.

Sincerely,

David McDonald

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.


________________________________________

Anonymous People

I’m wondering why someone would comment on a post as “Anonymous”? Is it a fear of being recognized as someone who reads your blog? Is it that they are in some sort of secret society and have pledged to cloak their identity? Could it be that they are really really important people, unable to risk being seen in a blog?

There’s a “spy” vibe that goes along with “Anonymous” comments. The passing of information from an unknown source. There’s even a possibility of trickery, where a blogger could post an “Anonymous” comment, and get blamed for what is written, if untrue. A set-up perhaps.

Yesterday I received an “Anonymous” comment regarding the Ron Chinn situation. I won’t publish it because it contains information that is very possibly false. I don’t want false information attributed to me. I don’t believe in making stuff up.

Hard Work

People with developmental disabilities are hard to serve. It has nothing to do with who they are as people, but the system of “care” that they live in. Those charged with setting up their services rarely know them as individuals and use cookie cutters in planning for their individualized needs. This puts strain on both the individual and their caregivers.

People with developmental disabilities are hard to serve. Of course the majority of these folks have experienced felonious abuse and neglect throughout their lives, so they often don’t trust people who may actually be attempting to assist them.

People with developmental disabilities are hard to serve. The resources to support them (i.e. money, accommodations, public education) are few and far in between. Most care givers in this field have a career life expectancy of about 1 ½ years. The value placed upon these workers by government and society is DIRECTLY tied to the value placed upon the people they serve by government and society.

People with developmental disabilities are hard to serve. The training provided to these underpaid caregivers around issues like self determination, diversity, civil rights, and dignity is minimal to say the least. There’s plenty of training on how to do good paperwork, how to follow administrative rules, and how to apply physical restraint when necessary. Don’t people with developmental disabilities understand what really matters?

People with developmental disabilities are hard to serve. They often rebel against notions like they HAVE TO go to a day program they hate because the group home can’t provide staff coverage for them to stay in their home if they want to. Or the idea that a sheltered workshop (making sub-minimum wage) is their only option for employment.

People with developmental disabilities are hard to serve. They sometimes go through their entire lives without accepting their place, far away from the table. Some have also been known to speak up on behalf of their brothers and sisters. Can you imagine that?

Depression

I didn’t put my finger on it until Monday afternoon. I finally became aware of what’s been going on with me lately... I’m depressed! It may seem strange to the reader, that someone could be moving through their life without even knowing depression is present, but that’s EXACTLY what my experience has been as of late.

When I first realized this was going on I went to the web to see what sort of treatment was out there these days. I haven’t had to deal with this in a long time and wanted to find out what was being said about handling depression in 2007. I’m thinking more along the lines of a psychological approach than drug therapy. I’d like to avoid the Prozac/Zoloft thing if possible.

I came across one writing that pretty well summed up what’s been going on with me. They wrote of the “3 D’s” of depression... Despair, Defeat, and Disappointment.
Those 3 feelings have been present in my life since my friend was euthanized on 12/14/06. I’ve gotten virtually no acknowledgement (never mind consolation or support outside of my own home) from the people who were supposed to ensure that this wouldn’t happen to her, although I filed a grievance on my deceased friend’s behalf on January 9th. It just doesn’t seem to matter to them. I guess I have a few more “D’s” to add... Disgust, Distrust, and Drained.

The best thing is that I understand this is not a permanent state I’m in. It will pass, and I will be okay when it does. It’s the “right now” that really sucks.

Ask Magenta

Check in with "Ask Magenta". We have plans to grow this thing through the roof. Magenta will address all your burning questions regarding disability rights, while creating a space for poetry and creative expression by people with disabilities and everyone interested in the disability rights movement. Your comments and your creativity are always welcomed. http://dawgoregon-askmagenta.blogspot.com/2007/02/enough.html

Coffee Blues

While coffee brews there will be $3,842,593 spent by the US government on a war designed to make a handful richer
While coffee brews a woman somewhere is being beaten or raped
So much more than a coffee colored bruise will be left behind
While coffee brews someone will take something from someone because they don’t have enough
While coffee brews someone’s human rights will be stripped away
In the time it takes my coffee to brew you will have decided that what I’m telling you either matters or not

What's That On Your Chinn, Ron ??

What follows is an email exchange we had with the Multnomah Educational Service District regarding Board member Ron Chinn's bigoted remarks regarding students with disabilities. It was initially posted in the comment section of the "Special Needs" post on our blog. However; they've passed a resolution which we feel needs more exposure so we're giving this it's own posting. It's probably a good idea not to let this dude off too lightly. We first emailed them on 1/16/07:

==========================================================
Dear MESD Board Members,
While watching the morning news on KGW this morning I heard a brief report pertaining to something a Multnomah ESD board member was quoted as saying last month at a MESD board meeting. Apparently Ron Chinn stated that students requiring special education services are “a bunch of slabs - slow, low and belows”. Aside from the use of poor grammar to state his belief, Ron has come out with what he’s likely privately thought for some time. I’m writing to express the Disability Activists Work Group’s (DAWG Oregon) official position on his words and obvious mindset.
I am also requesting a response from the rest of the board.

DAWG believes there is no room for such blatant bigotry toward students with developmental disabilities ANYWHERE in our community. In the last state legislature the Respectful Language bill was passed, making law what is really common sense anyway. For someone in a position of being a board member charged with oversight of programs that support these students to come out with such language is appalling, disturbing, and intolerable.

We believe that if similar derogatory words were used to describe his feelings about African Americans, Latinos, women, or the gay and lesbian communities, much more than censure would be happening.We believe that the Multnomah ESD must take immediate measures to remove Ron from the board, effectively demonstrating a zero tolerance for bigotry among all of its administration, employees, staff, and volunteers.

Sincerely,
Members of the Disability Activists Work Group
====================================================================================
Dear DAWG members:
On January 16, 2007, the Board of MESD voted to censure Mr. Chinn and publicly repudiate his remarks. The Board and this agency find his views to be repugnant. Mr. Chinn is an elected official and the Board has no legal authority to force his resignation or require him to make amends for his thoughtless and cruel remarks. In this instance the Board, MESD's unions, employees and mangement joined with the general public to express our lack of tolerance for such remarks. It is now up to Mr. Chinn to make the honorable decision to step down. Your email dated 1/16/07 was read aloud at the Board meeting as part of the official record. If members of your group would like an opportunity to address the Board or Mr. Chinn in person, the next board meeting is on February 20, 2007 at 7 p.m. I believe Mr. Chinn's email address is published at the MESD website. Thank you for expressing your concerns in such a timely fashion.
Harry Ainsworth Vice Chair MESD
January 19, 2007 3:39 PM
===================================================================
Then this came in yesterday afternoon:

February 6, 2007


Members of the Disability Activists Work Group
[Sent via e-mail]

Dear Members:

I am writing at the request of the Board in response to your comments and questions regarding the MESD Board’s actions and Board member Ron Chinn’s intentions since his comments about special education students at the December 19, 2006 meeting. The Board lacks any authority to dismiss Mr. Chinn or to require his resignation. The Board did pass a resolution at the January 16, 2007 meeting censuring him for his comments (resolution enclosed). The Board also intends to propose a resolution for the February 20, 2007, 7:00 p.m. meeting requesting Mr. Chinn to resign from the Board or at least to announce his intention to not seek re-election.

Mr. Chinn has apologized for his comments. He has declined to indicate his intentions of whether he plans to resign or to seek re-election to the Board.

The filing timeline for Board positions is from February 5 through March 15, 2007.

Yours truly,

Edward L. Schmitt
Superintendent

c: Board Members
Enclosure





RESOLUTION 07-01 – Board Member Ron Chinn’s Remarks at the December Board Meeting (12/19/06)

WHEREAS during the December Board meeting Board member Ron Chinn referred to students with disabilities as “a bunch of people that were low IQ’d, what I call a bunch of SLABs, slow, low and belows,” and when questioned, Mr. Chinn responded that his remarks were “simply a statement of fact.”

NOW THEREFORE BE IT RESOLVED the Board disagrees with Mr. Chinn’s derogatory and discriminatory remarks and finds that:

Mr. Chinn’s remarks showed a lack of respect for the individual dignity of the students and a lack of empathy for their parents and guardians;

Mr. Chinn’s remarks showed a lack of appreciation for the dedication and work of our staff who serve the students;

Mr. Chinn’s remarks showed a lack of awareness of the District’s legal obligations to the students; and

Mr. Chinn’s remarks showed a lack of responsibility in using his position as a Board member to express the remarks during a Board meeting.

NOW THEREFORE BE IT FURTHER RESOLVED the Board reaffirms its support for the goal that the “MESD shall respect the diverse values of its community and the dignity of each individual and shall help each student enrolled in its instructional programs” in the learning process as stated in Board Policy AE-AR – Instructional Service Goals, and

NOW THEREFORE BE IT FURTHER RESOLVED that this resolution shall be attached to the minutes of the December Board meeting (12/19/06) to demonstrate the Board’s opposition to Mr. Chinn’s remarks.

It's On...

Okee dokee… I gave the P&A’s Executive Director an opportunity to right the wrong done to my deceased friend, and he has chosen to ignore my grievance on her behalf. Now it’s on! This weekend I’ll fully prepare and send it on to their Board. They will not have “15 working days” to respond either.
Once again in the great state of Oregon the disability “advocates” are making it clear that transparency, accountability, and truth are not a part of their agenda. It seems to be more about being quoted as an expert or photo-ops. I’ll never understand why some of these people don’t go to work for Avon, where their plastic smiles would fit in nicely. Instead they profess to take the lead on the issues that affect people with disabilities in a big way and turn them into cartoons.
It’s sad and scary at the same time. They have become so indoctrinated into the mindset of “don’t make waves and protect your own” that they’ve lost touch with why they got into the disability business in the first place. This is not nearly good enough for people with disabilities in our state and it will be brought to bear.

15 Working Days

The reason this blog came to be is because of a friend of mine who died. I’m not at liberty to go into much detail about the situation at this time, because I’ve filed a grievance against Oregon Advocacy Center, and don’t want to give them an out. OAC is the federally funded “Protection and Advocacy” entity in our state that is charged with ensuring that people with disabilities rights are provided for. What I will say, is that something inside told me that I needed to become more involved in the struggle than ever before, and immerse myself in the disability community. I have done that. The blogs I’ve spent time in and the people who have shared with me thus far have been a godsend during this difficult time. I’m sticking around.

I filed the grievance on my deceased friend’s behalf on 1/10/07 with the understanding that I would hear from the Executive Director within 15 working days. According to my calculations that makes tomorrow day #15. I’d say there’s a 50-50 chance I won’t even hear from the ED by the end of business tomorrow. In their grievance policy it says that if I disagree with the ED’s findings, I can take my grievance to the Board of Directors for further review. These folks know me well enough to realize that is exactly what I will do. They also realize that public opinion within the disability community would back up my assertions 100%. I have lots of evidence that unequivocally supports my position.

The troubling part of all this is that it never had to happen. In the past I’ve told some truths about the way the P&A has made some costly (29 million) mistakes and that has certainly not sat well with them. I had a friend who used to say “The truth will make you sick BEFORE it sets you free”, and I think that’s what caused all this to come down. I believe anger, ego, and vengefulness were the driving factors in some of the decisions that were made in this situation. Of course motive is not what I’m concerned with, it’s about outcome.

Do me a favor… send out some positive vibe-energy-prayer at me. This is a very tough situation even for the brave capTAin. My friend meant a LOT to me, and it’s in her memory that I do what I’m doing.

What's Up With Disability Awareness?

What’s up with disability “awareness” demonstrations anyway? I’m talking about those exercises designed for school kids to “experience” what it’s like to live with a disability. For example, kids are encouraged to put two-sided tape between their fingers to see how their fingers stick together and how hard it is to pick up objects or to write. Or they are made to put a rubber ball between their knees then try to walk or run to “experience” a physical disability. Then they are asked to read a page of words that are printed backwards or with the letters jumbled around to “simulate” dyslexia. Probably the most insulting, they take turns putting on funny-looking masks and “experience” what it’s like to be laughed at. And my all-time favorite, they stuff marshmallows into their mouths and try to say a sentence to “simulate” a speech impairment.

All of this is supposed to create better understanding and empathy for their schoolmates who have disabilities. These exercises are so short-sighted and insulting that I believe they do more harm than good. The obvious is that they are designed to highlight differences, not similarities. In highlighting these differences, they sum up the experience of disability as performance deficits in areas where people struggle, but give no opportunity to see people with disabilities as individuals who possess a broad range of unique talents and abilities beyond these areas. Besides, what about the myriad of assistive technologies, equipment and adaptations to the environment that people use to accomplish these tasks at performance levels at or above what people without disabilities can do? These demonstrations also give kids the impression that all people with disabilities can be lumped into one group that experiences these things in the same way. They focus on the disability as the problem, but do nothing to show the unnecessary environmental barriers and prejudice in society that people with disabilities encounter daily. They actually involve “real” people with disabilities who take others through these degrading and misleading exercises. And they are focused on the wrong audience.

What’s needed is a demonstration for ADULTS without disabilities where they are forced to sit through a meeting with a case manager they’ve never met before asking for details about the likely peculiar “behaviors” they exhibit. They would experience the indignity of this 3-hour meeting during which every idea they present for assistive devices, adaptations or personal support services is met with a “No, it's not on our funded priority list.” They would be joined by a “vocational specialist” who would respond to every idea they present for appropriate workplace supports with “I don’t think ‘CARF’ will allow that goal” or “none of the other 'participants' are doing that, so we don’t want the others to think we’re giving any ‘special’ favors.” They would be told that a performance goal that targets 90 or 100% is not allowed, since it’s outside the standard “guidelines” that expect that the majority of people with disabilities won’t perform at that level. After the meeting they would be asked to sit and wait for their ride to pick them up. It will be at least a 30-minute wait, and it will arrive 10 minutes late. They would board the van and experience being driven around for 2 hours on a circuitous route that picks up several other people before arriving at their destination, which would normally be a 15 minute drive. Their destination? A dinner with their family, which was planned for 5 PM, but of course they don’t arrive until well after 6.

Now that’s disability “awareness.”

The Restraint Game

Much of what state-funded advocates focus on is workshops for people with developmental disabilities and their families about how to navigate within the very system that is often responsible for the discrimination that people seek to end. Activities center on things like “how a bill becomes a law,” registering people to vote, town halls and presentations for legislators who “require more information” on the issues and the wish lists, and exercises in non-binding legislation, such as “respectful language” bills based on the premise that educational campaigns and requests for polite labels will convert the majority to the cause. Through these activities, people are schooled very carefully on acceptable and unacceptable communication styles and on the rules of order for “civil discourse.” They are cautioned to follow the wise direction of the governor’s appointed experts in patience and restraint and the paid “legislative liaisons” who always know when the timing isn’t right to push harder and ask for more. We know of a case during a local ballot measure to raise taxes for human services when more than one respected “advocate” advised that the people lay low during the campaign for fear of too much attention to the issues that might bring people to the polls to vote against supporting the measure. Extraordinary effort is made to distribute information about a scarcity of resources that makes people fearful that if they “ask for too much” in order to expand access to more of their brothers, then they will be forced to give up some of what they count on in exchange.

A small group of people with developmental disabilities is often called upon to participate on numerous boards and commissions advocating this kind of restraint and legislative nuancing. The state-funded advocates call upon the same individuals over and over and do not make much effort to reach out to a broader community. Some may mistake this to mean that those who are repeatedly called are the only ones who are capable or willing to participate. I take it to mean that this is the best way to keep some people so busy that they don’t have the time or energy to engage in direct action and resistance that may, in fact, have more impact. We know of one woman who belonged to so many of these boards and committees that she openly told us that she was personally worn out from it and didn’t have time to attend to other aspects of her own life, let alone get involved in direct action on behalf of the broader community of people with developmental disabilities.

What people need to keep in mind is that those who have been historically excluded and victimized have never made progress through “patient” and “reasonable” measures, but through resistance and sustained struggle. They didn’t close the institutions, in Oregon or anywhere else, because of the people’s diplomacy, or through voting. Of course, I'm not advocating that people shouldn't get out and vote or participate in the legislative process. But, we didn’t achieve the Olmstead decision by voting or by being reasonable, but through litigation. Women didn’t get the vote through voting. Blacks didn’t defeat Jim Crowe through voting. And we didn’t create US democracy by politely placating the salaried ambassadors of the power personified in the King of England. How long will we listen to the counsel of patience and restraint? As demonstrated in all human and civil rights movements throughout history, this is not a situation in which we have been impatient. The neglect has gone on for centuries. We have a responsibility in the face of an obstinacy that threatens our very survival to show resolve and the belief in our own worth to end the negotiations and diplomacy. This is a situation that calls for direct action with a commitment to the difficult and sustained struggle that will ultimately free us.

"Bad Activists!"

This morning Magenta and I tuned in to C-Span to watch coverage of the war protest in Washington D.C. It was 9:00 A.M. our time and noon in the country's capitol. We were very much taken with the passion and conviction shown by speakers such as Jesse Jackson, Susan Sarandon, and Jane Fonda. They each made their points, speaking on behalf of Black people, veterans, women, poor folk, etc. We agreed with almost all of what was said, and also believe this is an unjust war based on imperialistic fantasy and corporate greed. However; we noted that the cost of this debacle for people with disabilities beyond wounded vets wasn't mentioned by any of the featured speakers, and this troubled us.

By 10:20 we went online to see if there was anything going on locally that we might be able to participate in. We wanted to make sure that a perspective regarding people with non war- related disabilities would be included in the discussion. We went to Portland Indy Media and found a protest scheduled for noon in Vancouver Washington in support of the D.C. march. Although we knew that a peace march would totally wipe us out, since we had contagious insomnia last night, both waking up at 2:00AM, we decided to go.

The next hour was extremely energizing. We turned up the volume on the T.V. and ran around the house getting ready. Magenta painted a sign that on one side read "WAR $UCK$", and on the other "MANDATE (big peace sign)". I gathered up all the pertinent buttons I could find. "Question Authority", "No War!", "Be Vigilant... Watch the Right Wing Like a Hawk", "Healthcare For All", "Choose", and a few white dove pins. We affixed these to our outer shirts. We grabbed the camcorder and made sure it was good to go. It was. I located an African shaker instrument, a Tibeten prayer drum, and took the mouth piece off my recorder. We were fully loaded. The final touch was our wildly colorful activist hats which we had yet to wear in public. Out the door we went at 11:20.

Living near the I-5 bridge that connects Oregon and Washington, we made it to the designated protest site by 11:35, in plenty of time to find a descent parking spot and join the fray. Only one small problem... nobody else was there. I commented that it seemed strange that organizers wouldn't be there already and we decided to drive around the area, thinking that possibly there was a staging area in a different place. We canvassed the neighborhood completely; up and down every street within a mile. No luck. At 11:50 we took one more spin past where this event was supposed to take place. Uh-uh. At that point we got back on the freeway to head home.

As we drove along in silence, totally bummed out, Magenta finally muttered, “We’re the worst activists on the planet – like we held a protest and nobody came.” By this point we were laughing, feeling stupid, and wondering how this had happened. “Yes, a job well done." I immediately came back with "Mission accomplished. Now take off that stupid hat." By the time we pulled into the driveway it was 12:10; just in time to share a turkey bologna sandwich and take a long overdue nap.

What If I Was Quiet?

When I was 14 years old and the Viet Nam war was raging my 2 older brothers were considering what they should do to avoid being drafted. One of them was 19, fresh out of high school. The eldest was 21, he’d quit college and was working on becoming an actor. My father who had been a sergeant in the army during WWII was opposed to the war, and had stepped away from an active political life he’d had during the Kennedy years. I heard about a protest that was to take place in the middle of the week at the college. Kids were going to walk out of the high school at a given time and march to the college for a rally. I joined them, chanting “Hell no, we won’t go!” and “1-2-3-4, we don’t want your fucking war!” I was the only freshman who walked out. I got suspended from school. The war ended 2 years later and neither of my brothers had to go.

When I was 22 I was off picking apples in Vermont in the autumn. Somehow I heard about a non violent protest that was to take place on Long Island at the Shoreham Nuclear facility. The reactor was about 50 miles between where my mother lived and New York City. If it had melted down, she would have been trapped on Eastern Long Island with no means to escape. I joined a few hundred people in the middle of the night hiding in the woods along a long stretch of road leading to the plant. When the workers began to arrive at day break, we went out one group at a time and laid down in the road until the police carried us to waiting vans for arrest. This went on for several hours, one group after the other, singing and chanting as we came from out of the woods and on to the road. Eventually a plant manager gave up, sending the workers home. It was amazing… all this cheering from inside locked vans. Within a year the Shoreham Nuclear Plant was closed for good and my mother ultimately died of natural causes.

I began working in social services here in Oregon when I was 28. I’ve never been accused of being too ambivalent on the job, and have butted heads with superiors and
Employers when I didn’t think things were fair or just regarding the people I’ve served. I know its cost me a good chunk of change and opportunity, but I’ve always figured it’s about the “people” not me.

My only sister died when I was 42. She left behind a 16 year old son who has autism. He moved here from California on 12/23/99. Working with Joe was initially a difficult task. Working with Portland Public Schools was even harder. Before he’d been enrolled in PPS for 2 full school years he’d attended 4 different high schools in our attempts to get him a real education instead of what “special” education was offering him. Finally we took the district to court in due process. Without a lawyer (they had 2) we litigated, shamed, and proved them negligent in providing him a free appropriate public education.. For the next 1 ½ years Joe attended Sylvan Learning Center on their dime. We’ve since had to battle on his behalf regarding questionable “supports”, diagnosis, housing choice, employment, and social opportunities. It’s ongoing, and I suspect that to continue, but he’s family and now lives a happy and productive adult life.

When I was 45 I went to work for a brokerage set up through a lawsuit settlement (see “State Rips Off 29 Million from Medicaid Eligible Adults with Developmental Disabilities Waiting for Services”) to provide long awaited supports for people who had been denied the help they needed for many years. After paying close attention to the “shell game” the state was playing I began to speak up. When I refused to stop telling the truth I was threatened with termination, and was compelled to resign from my job rather than being fired for doing the right thing on behalf of the people I love. That was truly a very painful part of my life, but 2 great things came from out of the pain. The Disability Activists Work group (DAWG) took off, and the state committed to stop its practice of shifting the savings from the brokerage system to elsewhere in the budget. No matter what you may hear or believe, DAWG was the catalyst which caused that commitment to be made.

What’s next? That remains to be seen, but it will be seen. Do I believe that I stopped the Viet Nam war, shut down a nuclear plant, defeated a school district, or altered the Oregon Legislature? Am I saying that I’m a saint and perpetually in the right? HELL NO! The mistakes I’ve made in my life are at least equal the good I’ve done. However; I do believe that one voice refusing to be quieted by the risk of "trouble" CAN make a difference in this world. Is that not why we’re here?

Protection & Advocacy Agencies and Class Actions: The Example of the Staley Lawsuit in Oregon

Let’s talk about “class actions.” They say the Staley lawsuit in Oregon was a class action. Although the case wasn't originally presented as a class action, there was a reason that the lawyers at Oregon Advocacy Center (Oregon’s protection and advocacy agency) worked with the lawyers for the state of Oregon to quickly convert it to one. We could criticize the Staley Settlement as just another “coupon settlement” – a favored legal maneuver that protects the defendant by binding everyone in the “class” with an unreasonably low settlement or a minimal benefit, such as a small check or a coupon for future services from the defendant -- in this case, the State of Oregon. This allows the defendant to forestall major liability by preventing a large number of people from litigating their claims separately and possibly winning larger individual awards. But, the Staley Settlement is unique in that it discriminates against certain members of its own defined class. It provides some members with immediate, comprehensive relief regardless of how long they’ve waited, and for the rest, a “coupon” for services available only on a timeline that is still unreasonable and still determined by the defendant.

The definition of a “reasonable” wait for relief is defined in the settlement itself: “thereafter, all individuals who become eligible to receive support services will receive the services contained in the agreed-upon ISP within 90 days after they become eligible.” This definition of reasonable is also reflected in the period of time between September and December (90 days), in which the original plaintiffs received their services. Yet, 6 years later 2,000 other members of this “equal” class are still waiting to cash in their coupons!

Then there’s the fact that in the Staley case,” the class was defined as “all similarly-situated individuals with developmental disabilities who are or may be eligible to receive services under the federal Medicaid program.” Where is the common wrong that these individuals have suffered as a result of the actions of the defendant? Just being eligible for services doesn’t distinguish someone as a member of a “class” for the purposes of a class action. Similarly-situated would be that you’ve been denied services and you’ve waited an unreasonable length of time, just as the original plaintiffs had complained. It’s shocking that the court even accepted this definition of the class. Could be that this demonstrates the judge’s own bias about developmental disabilities, that it’s really the disability itself that causes the suffering, not any action of the defendant. But, we know that being denied services is unique to some and not to others – the similar wrong they’ve suffered that warranted a lawsuit in the first place.

A common argument is that the requirement of court approval of a settlement and the ability of class members to opt out of settlements provide sufficient protections from these kinds of negative results of class action settlements. The argument goes no member of the so-called “class” has contested the settlement or the modification, so it must be OK with them, right? That would depend on whether they ever received a notice or that they understood it if they did. What a cruel irony! In the case of the Staley Settlement, in order for the members of this “class” to participate effectively in the legal process, they require exactly the kind of assistive services they are waiting for: assistance with interpretation of information, communication aids and accommodations, transportation to get to the court house, the state Capitol or to the implementation planning group meeting (assuming they were ever invited), and advocates to accompany them there to speak up for their rights. It’s doubtful that a class action could ever be an appropriate legal tool to be used by protection and advocacy agencies in a case like this.

The benefit of the Staley Agreement for the State is clear: “During the life of the Agreement, the Advocates [Oregon Advocacy Center] and The Arc of Oregon shall forebear from commencing any action on behalf of adults with developmental disabilities eligible for ICF/MR services on the basis of claims that are substantially the same as the claims asserted by plaintiffs in the Lawsuit.” But, wait a minute. The “Advocates” in this case are the publicly funded legal resource established by the DD Act because it was recognized that people with developmental disabilities are less likely to have access to lawyers! No kidding. Now more than ever.

The only thing the Staley Settlement accomplished was to take the teeth out of the P&A agency, so that people who are still waiting don't have the option to bring lawyers to argue that the state is investing too little and taking too long, and that they are being discriminated against because they’re still waiting for the Medicaid services they are already eligible for. Class action settlements are always designed to make things easier on the defendant. All you have to do is read the settlement and compare it to the state’s “Six Year Plan.” It’s always been in the plan to delay services for the waiting list while they shifted those already in services into cheaper (for the state) slots. Either Oregon’s P&A “advocates” did some very poor lawyering in this case (but they wouldn’t admit to that, would they?) or they were complicit with the governor’s lawyers to protect the state’s interests first and foremost (not likely they’ll cop to that one, either).

"Special Needs"

As individuals on this planet, we’re all different from each other which makes us all the same. I know this makes sense if and when you’re able to slow your brain down enough to think about it. The people who know and care about us will generally strive to understand HOW we are different so they can be supportive of who we are. I believe everyone does this for their loved ones. It’s related to interdependence and innate survival.

I realize that I’m pretty complex, and feel fortunate that a handful of people value me enough that they’ve learned how to support and love me in spite of my differences. In turn there are a handful of people that I’ve gone out of my way to understand their differences so that they know someone “gets” them. There’s real beauty in this.

Why then, does society put the label of “special needs” on some people, when we all have individualized needs? Is it because some people have needs that society refuses to understand and accept as natural? Is it because some people are less valued by society because their differences are more obvious or blatant? Are anyone’s needs really more special than anyone else’s? I don’t believe they are.

The thought underlying what I’m writing here (in case you haven’t already figured it out) is that I believe it’s time to stop labeling people who have different needs than the vast majority as “special”. It only serves to set them apart from their peers and community, limiting and marginalizing them. I believe that true inclusion in society can only happen when we see each other as individuals who are all the same. Ya know??

What Would Dr. King Say?

Being relatively new to the blog universe, I’m trying to figure out how this all works. Thankfully, I’m honored to be associated with the multi-talented Magenta who set this up. Left to my own devices I’d probably either flounder eternally in cyber space or throw this computer through a window. I’ve never been know for patience.

This leads me to the reason I’m posting today. I’ve been thinking about the Reverend Dr. Martin Luther King Jr. more than usual the last few days. With the celebration of his birth and all the accompanying activities upon us, I’ve been doing a lot of reflecting and sharing with Magenta on what he was all about. His vision for this country and his “Dream” for all people will be the topic of many public events tomorrow. I wonder how much we’ll be hearing about his patience.

I have heard far too often that people with developmental and physical disabilities have come a long way in society over the years. Some of the examples cited are along the lines of “most of the state run institutions that once housed folks are no longer in operation”. That saves those states a good amount of money. People tell you “self direction is much more prevalent than it used to be”. You’ll also hear "children with disabilities are now more included at school than ever before”. Without available resources, it really doesn’t mean much does it?. I’d say these are questionable signs of progress, and not nearly good enough

75% of people having disabilities are poor in this country. That sucks!
35% of people with disabilities are employed. 78% of people without disabilities are employed. That sucks!
46% of people with disabilities in the U.S. report having to go without needed medical equipment. That sucks too!

If Dr. King had focused on ideas such as “at least we’re no longer slaves” in 1963 or had written a speech where he proclaimed “I have a wish list!” the Black civil rights movement would have gone nowhere. He made demands. He made some people very angry. He raised his voice and shook his fist. He was impatient. It’s my hope that readers of this blog will get in touch with their own impatience and refuse to settle any longer.

State Rips Off 29 Million from Medicaid Eligible Adults with Developmental Disabilities Waiting for Services

From 2001 to 2005, the State of Oregon saved over 29 million dollars through nine community based "brokerages" operating to connect adults with developmental disabilities with services in the community. More than 2,000 people are still waiting for services and currently receiving nothing more than a yearly visit with a county case manager. It's important to note that these are people who have already qualified for Medicaid funded services, but have been placed on a "waiting list" because it's said that services are not available. But, instead of making services available, the legislature has chosen to use the savings to help balance the State's budget.

UNLOCK THE WAITLIST! Staley Settlement November 2001

Most of you are probably unaware of a lawsuit brought by Oregon Advocacy Center back in 2000 on behalf of five Medicaid eligible adults with developmental disabilities. Oregon Advocacy Center is the federally funded Protection and Advocacy agency charged with providing legal assistance and investigating and resolving abuse and neglect cases involving people with mental and developmental disabilities. In this case, the neglect charges were brought against then Governor Kitzhaber and the state of Oregon. How were they neglecting people with developmental disabilities? By denying equal access to Medicaid funded support services to all people with developmental disabilities who already qualified for them. According to Medicaid rules, services are supposed to be in place within 90 days of eligibility.

Immediately the governor’s lawyers got together with the lawyers at OAC to arrange a settlement. Although there was plenty of evidence of the state’s long term neglect, the lawyers decided on a settlement known as the Staley Settlement. According to the agreement, appropriate support services were to be made available to ALL adults eligible for developmental disability services by 2005.

The disability advocacy community was all over the media - from the ARC to the Oregon Council on Developmental Disabilities (OCDD), the "Unlock the Waitlist" campaign was a success! Brokerages were created with the mission statement: “Universal access to services for all!”

But, from the beginning, the state was enrolling into brokerages more people who already had been receiving state-funded services and young people straight out of high school than people who had been on the original waiting list. In retrospect, it appeared that the plan from the beginning was to transfer people to the brokerages at a lower cost and return the savings to the general fund to use elsewhere, rather than reinvesting it in services for people with developmental disabilities who were waiting. By late 2003, only 1,000 of the original 3,100 had been enrolled from the waiting list. A freeze on new enrollments was put in place.

Resettlement signed by governor September 22 2003

No one from the advocacy community including the ARC of Oregon, Oregon Council on Developmental Disabilities (OCDD), or the brokerages appeared at a hearing on Jan 14, 2004 to contest the September 22, 2003 "modification" of the agreement that extended the waitlist to 2009. By this time, the advocates had taken up the mantra of "protect what we have" rather than insisting on getting services to the 2,000 people who were still waiting. This time the media was absent, too. According to the questions and answers document prepared by DHS and posted on the ARC website, "the modification saves the State money and prevents cuts in existing services by extending the pace and timelines in which people will eventually get services."

Disability Activists Work Group (DAWG)

At the ARC's 50 year anniversary convention May 8, 2004, Mike Maley, one of the DHS employees responsible for overseeing the implementation of the brokerages, announced that 50% of the people from the waitlist were now enrolled in the brokerages. At the time, David was a Personal Agent (case manager) working at Inclusion, Inc, one of the brokerages located in Portland. He knew the truth was that of the original 3,100 on the waiting list, only 1/3 had been enrolled. On May 9, the day following this deliberate confusion of the facts regarding enrollment numbers, the Disability Activists Work Group (DAWG) was formed.

The Unified Response: Stonewalling and Silence

On May 25 DAWG attended a DHS budget Hearing where we made it clear that what was going on would not be done quietly or without protest. When David was done with his testimony calling into question the shell game that DHS was playing with the Staley budget, Gary Weeks, director of DHS at the time, stated that he couldn't argue with any of the points David had made.

On August 2, at another DHS budget hearing, Mr. Weeks gave a presentation in which he said that community based brokerage services were less expensive for the state. On August 26, DAWG sent James Toewes, director of Seniors and People with Disabilities (SPD), four specific questions identifying several "pots" of money where it appeared that millions of dollars must have already been saved -- either through individual service plan dollars that were budgeted but never used, or lower administrative and service costs from those they had transferred to the brokerages. He replied on 9/30/04, but only after some "urging" from us to Gary Weeks. His reply was that he didn't have the staff resources to answer our questions, and suggested that we contact Jim Wrigley of the Oregon Advocacy Center (OAC) or Bill Lynch, the chair of the Staley Implementation Group to get the answers.

We knew that Mr. Toewes was just stonewalling us, but we wrote to Mr. Wrigley anyway. On October 20, 2004 Jim Wrigley responded that he didn't know the answers to any of our questions about the budget. We wondered how or why the attorney for the litigants would resettle without having this kind of detail on the budget for implementing the program outlined in the agreement. (NOTE: This was a full year after the resettlement.) In any event, he wouldn't have time to look into it until after the Emergency Board meeting in November, 2004.

By January 6, 2005 we still hadn’t heard from Mr. Wrigley at OAC responding to our questions from 3 months earlier, so DAWG contacted Senator Avel Gordley asking for help in getting the answers to our questions regarding the vast savings the State has seen through the misuse of the Staley Settlement funding. On January 24, 2005, Senator Gordley wrote a pointed email to Mr. Weeks at DHS telling him to get us the numbers we had been requesting since August.

We finally received the numbers from Jim Wrigley of OAC on 2/28/05. (NOTE the confidentiality warning regarding public information.) Mr. Wrigley’s calculation was a little more than $20.5 million, which doesn’t include the savings in operating costs at the brokerages. This adds another 8.5 million in savings. It’s easy to chalk up lower operating costs if you need fewer personal agents (case managers) to handle a lower caseload due to keeping people on the waiting list. Our calculation from the information we finally received from DHS is that over 29 million of the legislatively adopted budget was saved through the brokerages and returned to the state's general fund. Note that in his email Mr. Wrigley acknowledges that this program was cut by 50%.

For almost two years, DAWG (Disability Activists Work Group) has sought to call for accountability on how and why this could happen to such a vulnerable population. We have contacted several of our legislators, but no one in the legislature has seen fit to answer any question regarding what happened to the 29 million.

As it turns out, the November Emergency Board meeting that Mr. Wrigley referred to was an opportunity for DHS to present yet another “rebalancing” of their budget, in which they shifted $14.2 million of the previously established funding from the Staley program to the general fund to be used for other programs.

On one of the last days of the 2005 legislative session on the Oregon Public Affairs Network, Senator Kurt Schrader spoke on the floor about HB 2797, which won’t allow the State to continue its practice of using the Staley savings to fund other state programs. He thanked “the Staley folks for ONCE AGAIN stepping up to the plate in light of the difficulties within the budget” and recommended that the bill be passed.

We wrote to the Staley Implementation Group (SIG) early in the morning on August 10 asking four questions related to Senator Schrader’s comment. Since the Staley Implementation Group is supposed to be the oversight committee in charge of the decision making around implementation of the settlement, we assumed they must be the “Staley folks” the senator mentioned and that they would know what he was referring to in his commendation about “stepping up.”

DAWG later received a forwarded copy of an interesting email from Kathryn Weit to the SIG members, who is the legislative liaison (paid lobbyist) for the Oregon Council on Developmental Disabilities and a Staley Implementation Group member, urging the rest of the group to stay on message and not respond directly to our questions. (NOTE that our email to SIG was also sent to the legislators, but Ms. Weit chose to take them out of the loop in her message.) It’s interesting that while the SIG is supposed to be the oversight committee, Ms. Weit is obviously educating them about something they had no knowledge of. To this date, we have not received the “unified response” she refers to. This unified response to DAWG(S) was also mentioned in the minutes of the SIG committee in September. We have requested a copy of the unified response that was discussed during the September meeting, but have so far been stonewalled on this, too.

DAWG believes that the protection and advocacy system lawyers and the Staley Implementation Group should have stepped up to insist that any savings be returned to the program to expand services to more people. This is especially true since there was a lawsuit settlement that intended just that. If a settlement is going to create a special fund for a special purpose, we have a reasonable expectation that the money in that fund will be spent for that purpose, and not be used as a slush fund to provide backup financing for other programs.

Over 2,000 people continue to wait

The Staley agreement has never been fully funded or executed in good faith according to the court order. The governor’s “principles” budget for 2005-2007 continues the trend to underfund the program. There are still over 2,000 people with a developmental disability whose civil rights are violated daily by remaining on the waitlist for Medicaid Home and Community Based Waiver Services for which they have already been found eligible. Some of these people have been waiting for more than 30 years. For too long, state policy makers, politicians and the public have ignored that which is plainly stated in the ADD Act of 2000, that "a substantial portion of individuals with developmental disabilities and their families do not have access to appropriate support ... and remain unserved or underserved."