Thursday, November 29, 2007

The Meeting-You're-Not-Supposed-To-Know-About

I've decided that in the interest of REAL community involvement in repairing the broken system that people with disabilities live in, that I will post this "invitation" that went out to a select group. It was forwarded to me by someone who is obviously tired of the secret society of "advocates" who want to tippy toe their concerns through life. Email me if you're interested in attending, and want some alternative info..

Concerned about the abuse issues identified in the recent Oregonian articles? Please mark your calendar to attend an upcoming meeting!

You are invited to attend a public meeting on December 6, from 9:30-11:30 at the Office of the State Fire Marshall, 4760 Portland Road NE, Salem, 97305. (See attached directions) DHS leadership, the Governor's Office and members of the Legislature have been invited to brief advocates and concerned citizens about the health and safety issues of people with developmental disabilities raised by the Oregonian. They have been asked to discuss what is being done or planned to remedy the problems identified. The meeting will include a Q & A session. Feel free to share this announcement.

Kathryn Weit
Oregon Council on Developmental Disabilities
540 24th Place NE
Salem, OR 97301
Phone: 503.945.9943
Cell: 503.551.6069
FAX: 503.945.9947

Wednesday, November 28, 2007

The Inclusion Debate

I’m of the mind that students with developmental disabilities should be educated with their non disabled peers. It just makes sense that in a school setting both groups of kids would benefit from this exposure. Of course inclusive education needs to be set up and implemented properly, ensuring that ALL students’ needs are met.

Apparently, not some other interested parties are in agreement with me on this. There is a good article in yesterday’s Wall Street Journal Online which goes into length about the ongoing debate.

Monday, November 26, 2007

Early Morning Poem

I feel like I woke up to write.
Foreboding dreams about 4; then 2 bearded men who appeared to be related, and on some kind of mission.
Something about darkness on the horizon.
Something about looming change.

I want to write about my daughter and how much of a beautiful human being she’s become.
I want to write of the 14th anniversary of a heart attack.
I want to write about my strategies that disappoint the “advocates”.
I want to write about psychic abilities, prayer, and other ethereal matters.
Instead I write about a feeling.

There is something going on this morning.
I’m wide awake at 1:30 AM.
I sense a change occurring either in myself, or the world at large.
Today; Monday, November 26, 2007.
There is something going on.

Saturday, November 17, 2007

Everybody Loses

When nobody follows agreed upon rules
Everybody loses
When minds close like steel traps
Everybody loses
When ideas are treated disrespectfully
Everybody loses
When secrecy supercedes transparency
Everybody loses
When opinions are ignored
Everybody loses
When self interest overcomes the mission
Everybody loses
When fear of the truth is more important than the truth itself
Everybody loses

Do you really like to lose?

Friday, November 16, 2007

Ok, I Was Wrong... Sorta

After listening to yesterday’s testimony at City Hall I finally “get it”. I’d been thinking that a tribute to honor Cesar E. Chavez could take many forms. A community center replete with recreation, employment, housing, and social resources named in his honor was 1 idea I had. You know; let the city put its money where its mouth is. Another thought I had was to name a street in an upscale part of town after him. Make those rich folks squirm a little bit. I couldn’t figure out what the big deal about renaming N. Interstate was all about. My question was answered by folks presenting testimony.

One woman spoke of how N. Interstate runs parallel to N.E. Martin Luther King Boulevard, and that’s important because of the struggles the Black and Latino communities have shared in Oregon. That makes a lot of sense. Another point made by several people was that the Commissioners had given their word that this was going to happen, and had reneged on that promise. I wasn’t aware of this (which I’ll go into further), but that makes their word pretty worthless in general. I guess what really got to me most was a man who spoke of “wanting a win”. In his 2 minutes of testimony he was able to express the frustration of a minority group that seems to always be on the losing end of things. He articulated the feelings his people have about not getting to live self directed lives. He was talking about PRINCIPAL.

Having said that (to quote Randy Leonard), I want to share a few thoughts about the process involved, and how people in this state do things. I live 3 blocks west of Interstate on N. Emerson St. I heard both proponents and opponents of the name change saying they had each done extensive neighborhood outreach to find out what people on and around Interstate thought of it. No one came to my door. No one sent me any letter. No one left any flier on my porch. Perhaps if they had done so, I wouldn’t have been as ignorant and uninformed as to what both sides were thinking. I guess you had to be on the inside to have that information. The fact is, I didn’t even know there was a problem until AFTER a meeting with the Overlook Neighborhood Association had occurred. A quarterly newsletter they send out told me about a row that had taken place.

Why do Oregonians believe that secrecy and small groups of insiders is the best practice for improving the community? I’ve written about this phenomenon several times in regard to the developmental disability community here. It’s not only a weak modus operendus, but in my opinion it’s blatantly unethical. Open and honest dialogue is what gets things done in a sustainable way. If you’re going to run around trying to be Bush Junior, your karma/God will catch up to you, and in the end things will go belly up. I’m not a religious man, but I do believe in the Golden Rule. Do you want to be left out of the loop on issues you care about? Didn’t think so...

We have merely seen the tip of the iceberg on the issue of Cesar E. Chavez/N. Interstate Ave., and now S.W. 4th Ave. Ultimately there may be some serious discussion on race, class, and phony politics. I believe that may result in some healing. It will be painful but good; but only if it’s done in an honest, transparent way. In the meantime, I want to go on record as saying RENAME NORTH INTERSTATE AVE. to NORTH CESAR E. CHAVEZ BOULEVARD!!!!!!

Tuesday, November 13, 2007

Only Another Scandal

On Saturday afternoon I emailed the following to around 50 people in our state. Among them were people interviewed in the Oregonian article about abuse and neglect of people with developmental disabilities. I cc’d it to community members and politicians. I want to drive home the point of just how badly we are in need of system reform in Oregon. It can no longer remain (bad) “business as usual.” Of course I've yet to hear any answers to my questions from the people I asked, but I have received support from some of the people who were cc'd. They'd also like to know the answers.
Dear Advocates,

We are nearing the end of the week following the article in Sunday’s Oregonian regarding the abuse, neglect, and exploitation of people with developmental disabilities who were deinstitutionalized in Oregon.I want to be perfectly clear that I believe people with disabilities should never have been forced to live in institutions, but it's equally clear that Oregon has not held up its end of the bargain. I continue to Google “abuse neglect Oregon” searching for some kind of statement by any, some, or all of you. I’ve found none. The closest I’ve come to finding anything at all about this issue is a letter to the editor of the Oregonian from Tim Kral, which I’ll address further in this email. The people I’ve cc’d have been sent this in order to have as broad a conversation as possible.

The article itself speaks volumes. The quotes from some of you raise questions that I will ask here. Feel free to leave me without the answers, which is customary in the culture of secrecy that is the developmental disability system in Oregon. The reason for this email is to begin an honest assessment of where we are in Oregon around the issues brought up in Michele Roberts’ article. Any enlightenment or clarification any of you might share with me is most welcomed.

The first most glaring question is who of you knew about the extent of the abuse and neglect prior to the interviews and ensuing article?

Since the data goes back to 2000, what actions did you take to remedy the situation PRIOR to the article?

What actions have been taken since the article?

Who wrote the Oregon Network’s bulletin of 3/26/07 with the talking points about how well the people from Fairview are doing living in the community?

Was the writer(s) aware of what the truth is when that bulletin went out?

Why is there no mention of this travesty on the DD Coalition/Oregon Network website?

Were negligent homicide or criminal neglect charges ever discussed or filed by any
of you who knew about the David Pape/Natasha Thomas death?

Did any of you question the change of the Cause of Death from drowning to pneumonia?

Did any of you know Pape was being paid $18,000 per month for running his foster home?

I knew Paul Crawford. He was a very warm and outgoing man. In my last job I worked closely with one of his roommates from Rainbow. This man has some serious behavioral issues. I guess it was the staff I used to meet with monthly who were given the $5000 worth of “bonuses” his mother intended for the residents.

Were they ever required to return their “bonuses” to Paul’s mother?

Were any of his staff charged with anything?

Dr. Kitchens, do you REALLY believe that if someone vomits a black-colored substance that “most people” wouldn’t recognize it as possibly being blood, and take action?

Do you also really believe that the delay of getting the right language into a document relieves DHS of responsibility for immediately implementing a mandatory 911 training for caregivers?

Does anyone believe that Paul lying in a bed full of feces, vomit and urine; with enough urine on the floor to make someone almost slip is not criminal, but is what you’d expect from most people in the same situation?

If his workers were found to be responsible for his death, why were they still working at that home in 2006? The three I’m familiar with were all there longer than 3 years.

Mr. Lynch, you are quoted as saying; “It’s a tragedy. We really need to turn this around. This goes well beyond embarrassment”.

Why are you embarrassed?

Did you not know about this systemic travesty prior to Ms. Roberts talking to you?

You now have a state email address. Are you an employee of the state?

Why is there no mention of this travesty on the OCDD website?

Mr. Toews, you are quoted as saying; “We’ve tried to approach how we safely support people with pretty complex needs. We’ve done as good if not a better job than most states on trying to drill down on that”.

Is it not true that when I contacted you in regard to a grievance against Multnomah County staff about a profoundly developmentally disabled woman last year, you allowed them to circumvent the Oregon Administrative Rules?

Was that “drilling down” on safely supporting her needs?

Are you afraid that now that the truth has been told, Oregon will not be looked upon as the model state you often talk about?

Why is there no mention of this travesty on the DHS website?

Mr Joondeph, did you tell Ms. Roberts that both you personally, and Oregon Advocacy Center investigate abuse and neglect investigations?

How many do you personally investigate each year?

Did you tell Ms. Roberts the County licenses foster homes, when in reality the state does that job?

Did you tell her county case managers do investigations, when in reality Protective Services and your agency does that job?

Does OAC plan to file a class action against the state which will prevent INDIVIDUALS from stepping forward to sue?

If so, does OAC plan to settle out of court?

If so, will it result in agreeing to wait for reform?

If so, will OAC set up an Ombudsman program as part of that settlement?

Would that expand your powers in Oregon?

Why is there no mention of this travesty on the OAC website?

Mr Kral, in your letter to the editor of the Oregonian you wrote “The Oregon Rehabilitation Association represents community nonprofit organizations providing group homes”.

How many of these organizations does ORA represent?

You mentioned that ORA “supports immediate steps to enhance the care and living conditions of individuals with disabilities.”

As the “representative,” is it not your place to demand rather than "support"?

Was there a step ORA could have taken when the Legislature only gave DD Services 20 million instead of the 65 million dollars originally requested of them last year?

Why did you fail to mention that in your letter?

Did you mention the abuse and neglect travesty when you made your request?

Would that step have assisted you in enhancing the care and living conditions of people with disabilities?

You wrote that wages for group home workers are low. Is that also the case for group home representatives such as ORA?

Why is there such a disparity?

You said turnover is high with group home staff. Is the same true with representatives?

Why is that not the same?

How much time do you actually spend with the individuals living in these group homes?

You wrote that workers in group homes need to be more accountable. To whom do they need to be more accountable ?

Do representatives such as ORA, OAC, OCDD, The Oregon DD Coalition, and DHS need to be more accountable?

Finally, you wrote that “the vast majority of former Fairview residents have enjoyed a much higher quality of life since leaving.”

I don’t believe that this “glass is 4/5 full” philosophy makes one bit of difference to the 1 in 5 who have been seriously abused and/or neglected. If you look at the numbers closely, nearly 50% have had abuse and or neglect charges substantiated, with many more alleged. I’m certain that being in the community beats being at Fairview, but by how much when you run this high a risk of being abused and/or neglected?

Who exactly are ORA’s state partners?

Did DHS hide the data around abuse and neglect or did no one ask?

Are you an employee of the state?

Why is there no mention of this travesty on the ORA website?

These questions are hard. I am well aware of that. However, in light of the article written by Michelle Roberts, I believe hard questions need to be asked. My questions are not “personal attacks”. They are, in fact, questions that need to be answered if system reform is to occur. It’s obvious that system reform that includes real accountability must occur if we are going to do anything about the neglect, abuse, and exploitation of people with developmental disabilities in Oregon. The conversation must begin immediately, and must include caregivers, individuals receiving care, their families, friends and personal advocates. It must not happen behind closed doors, among a secret society that has yet to truly acknowledge the urgency.


David McDonald

DAWG Oregon

See what's new at and Make AOL Your Homepage.

Sunday, November 04, 2007

Unquestioned and Beyond Reproach

On the cover of today’s Oregonian, just below the “Duck Nation Flying High” article is an expose of what has become of many folks who were moved out of Fairview Training Center over the course of almost 20 years until its closure in 2000. As I have been saying for a long time, I don’t believe they’ve done so well. Of course , there are some people in this state who have been saying otherwise, but it is now official that their myth of Oregon being some kind of model around developmental disabilities is exactly that... a myth.

On March 27th of this year I wrote to 4 Oregon State Senators and 2 State Representatives. The subject line was: “EOTC close? Or stay open?” The email came on the heels of another that was sent to me the previous day from the Oregon Network; a group of self described “advocates” of people with developmental disabilities. They were insisting on the closure of Eastern Oregon Training Center, so that the people living there could move into group and foster homes in the community. My stated concern was that from the early 1980’s, when the state first began moving folks out of Fairview, until its closure in 2000, these people weren’t doing nearly as well as the advocates were leading people to believe. The letter itself follows...

Dear Elected Officials,

I opened an email this morning sent to me from the Oregon Network regarding the Eastern Oregon Training Center in Pendleton. I was asked to forward their talking points related to the Governor’s decision to suggest keeping the institution open for the next few years. I’m writing something different to you about my feelings in regard to this matter. I don’t like talking points.

First, I want to make clear my belief that the institutionalization of people with developmental disabilities is a big part of the problem we now face in our state. It was only a matter of time until people admitted that it was a mistake in the first place, and it was decided that change must occur. By the mid eighties the Community Integration Project (CIP) was instrumental in moving folks out of Fairview and into the community. Mostly in waves people were moved out until its closure in 2000.

What I would like to know is how these folks who were moved into the community have REALLY fared.

In the Background section of their “call to action” it says:

“Oregon does not need an institution; no one we have spoken with disagrees.”

Who have these folks spoken with? I’m quite certain that in the usual manner, a select group of people claiming to speak on behalf of ALL people with developmental disabilities and those who care about them in Oregon agree with each other. Nothing new there.

“There is broad-based agreement that people with developmental disabilities can and are being successfully supported in their communities all over Oregon”.

I agree these folks can and should be successfully supported, but disagree that they are. In the last year I have personally witnessed the finding that a profoundly, non verbal man’s thigh bone had been broken for months before it was discovered by accident at a hospital visit. No one at his group home had any idea how it happened. He was prescribed and given a pain reliever that he is allergic to.
A personal friend of mine died of untreated cancer because her care team made medical decisions based on personal bias without seeing a prognosis until over 4 months after she was diagnosed. I don't know if a 2nd opinion was ever gotten.
Both of these individuals came out of state run institutions in the eighties.

The “advocates” go on to talk about the Facts:

“Recent improvements at the institution have created living conditions similar to those found in any group home in the community – only these “homes” are not in the community, they are clustered together on the outskirts of town.”

The truth is that the vast majority of the more profoundly disabled people go to Alternative to Employment (ATE’s) day programs 5 days per week for a total of 20-25 hours. These programs have a consumer/staff ratio of about 3 to 1. Many of the participants require changing and assistance with eating a snack. Generally something comes up where more than 1 staff is called upon for assistance. Factor in a very unreliable LIFT transportation system, and they are lucky to actually be out in the community for more than 2 or 3 hours per week. The staffing ratio is even worse at home where some of the people I know are fortunate to go anywhere during the entire week. I don’t actually see much difference than what is described above. In fact, many community based group homes are located on the outskirts of town in Oregon.

“The 183 employees who work there are well trained, caring and dedicated, and well paid. It is no surprise that there is little turnover”.

This has a sour grape flavor to it. Though it’s true that state paid workers make a living wage, believe me; so do the crafters of this statement. Much more than state paid caregivers. The amazing piece in this is that in Oregon it’s not the people who call themselves "the advocates" who suffer financially, it’s those working directly with dependent individuals.

“The current cost of the institutional model of services is too high! There are more cost effective ways of providing high quality services to these individuals.
The DD system cannot afford to waste money! There are too many unmet needs including resources for existing community programs and in-home support for families with medically involved children.”

In 1998 the "advocates" cried; “UNLOCK THE WAITLIST!” People who were not receiving ANY services were the reason Staley was settled. These same people chose to resettle and allow the state to retain the savings from Staley, rather than standing up for those still waiting. They got what they wanted for their families and friends and changed their mantra to “SAVE OUR SERVICES!”, abandoning those still waiting. As you can see they now want to improve the quality of what their family and friends receive or expand and add to what they already have, and no longer acknowledge the waitlist-elephant in the room.

Talking Points:

“People with developmental disabilities do not belong in institutions. They have a right to live in the community. In fact, they have lived in the community successfully for decades”.

I’m sure the crafters must be talking about THEIR families and friends because most of the folks I know are having a struggle living in the community.

“We do not need to spend $288,000 per person per year to provide people with developmental disabilities quality services.”

This IS a large amount of money. However, the $9600 per year for folks enrolled in Brokerage services is not enough money to assist someone in ”living well”within their community either. I haven’t heard much talk about that. Maybe there has been some talk, but how would anyone but an insider know?

“I support the transition of the current residents out of EOTC into a community setting and fully providing for their needs. Redirect savings from EOTC to the DD budget; use the savings to support people with developmental disabilities to live in the community.”

My question is this... if our state is FULLY providing for the needs of only a relatively few now, what difference will closing EOTC make to those who still have nothing? The state took $29,000,000 from brokerage savings and used it in other budget areas instead of Developmental Disabilities with these same people’s blessing. It will be different now because?? The state and/or "advocates" have yet to admit or acknowledge this reality, but that makes it no less a reality.

It’s my opinion that whatever is decided here, that a thorough and complete review of what has and is going on in the lives of people already deinstitutionalized in Oregon since CIP1 needs to be the #1 priority. I believe you’d find, as I say, that the rosey picture painted by the "advocates" is inaccurate at best. I also believe that until there is true system reform around developmental disabilities in Oregon, we’ll simply continue to neglect our most vulnerable citizens.

I'd appreciate someone forwarding this to the Governor. His "Contact" form only takes 1000 words...

David McDonald
DAWG Oregon

I only received one response from one of our elected officials. It simply said;
“Dear David,
Thank you for taking the time to write to me to voice your opinions and concerns about this important issue. I will take them into account when making my decisions.”
I have no idea if one or more of the legislators I contacted were prompted to involve the Oregonian in getting to the truth of what happened with these people. After all... I only heard from one. But now the cat’s out of the bag. Now we can have some serious discussion about system reform. Now the advocates can stop trying to fool the public.

Saturday, November 03, 2007

A Perspective on "Perspectives"

I received a copy of a magazine titled “Oregon Perspectives” in the mail this afternoon. This is the 2nd issue of this magazine that has been mailed to me in the last 3 months. This one has a shiny glossed cover both on the front and back. The photos on both covers are beautifully illustrated in vibrant colors. We’re talking fancy. Inside were pretty light green background pages with several photos of both adults and children, along with accompanying articles regarding inclusive education for students with developmental disabilities. This must have been expensive to create and mail out. It lists the Oregon Council on Developmental Disabilities as publisher.

This is the strange part. The system supporting people having developmental disabilities in our state is woefully underfunded. During every legislative session you will find the entire DD community rallying in Salem to ask for more dollars to fund programs and services. In fact, many of the people whose photos and articles appear in this magazine lead these desperate charges. They know first hand how difficult life is in a system where each dollar comes far and few between. Why are they spending money on a Rolls Royce magazine at the same time people with developmental disabilities are suffering all over this state? It makes no sense.

Another perplexity around this issue of the magazine is its subject matter. Down at the bottom of the front cover it says “Inclusive Education” is the focus of this edition. These folks know there are far more adults with developmental disabilities being excluded from real participation in their communities than there are children with developmental disabilities in the schools in our state. Adults with developmental disabilities are excluded in employment, safe and affordable housing, recreational opportunities, a viable transportation system, and socially. They are kept in abject poverty through arcane rules around not being allowed more than $2000 in resources for fear of losing their Medicaid. Does this struggle really need to take a back seat to education; one part of a whole person’s life? Don't get me wrong. I believe inclusive education is very important, I just believe that a discussion about "inclusion" should transcend age.

Perhaps I’m jumping the gun here, and the next issue will be about how adults with developmental disabilities have their civil and human rights violated in Oregon daily. And maybe a less expensive “Oregon Perspectives” will be sent out, with the savings going toward improving lives. Somehow I doubt it.