“Our lives begin to end the day we become silent about things that matter.”
Martin Luther King Jr.
I used to have a wonderful career working with people who have
developmental disabilities. I’m not sure exactly why I loved my work as much as
I did, and I’m not sure why I felt it was the most important work that I could
do, but I did. Something that always seemed to be the MOST important part of
the work for me was watching for abuse and neglect of care for folks who could
often not speak for themselves.
I honestly believe that the end of my career came back in 2007,
when I asked a question regarding the accountability for the abuse and neglect
of folks as reported in The Oregonian newspaper. I became a “persona non grata”
in the field because I wanted to know the truth. What follows is how it all
panned out. I know it’s a lot to read, but I also know it’s well worth it.
Back on November 11th of 2007 I sent out the email below. This
was in response to an Oregonian article highlighting horrific behaviors of
people paid to protect folks with developmental disabilities in our state.
I was (and continue to be) very concerned that the accountability for these actions was being placed on the abusers, while the higher-ups in the system who run things and are paid to know what’s going on, were all but ignored. I believed then, as I do now, that what is needed is a Legislative Hearing to see if there was a cover up to preserve people’s jobs, rather than expose the truth to the light of day.
I sent this email to Tim Krall of The Oregon Association of Rehabilitation, Bob Joondeph of Oregon Advocacy Center, James Toewes of Seniors and People with Disabilities, Tina Kitchen of the Department of Human Services, Bill Lynch of the Oregon Council on Developmental Disabilities, and the Oregon Network through the DD Coalition. All these folks held the answers to questions that needed to be answered.
I also cc’d the letter to State Representatives Mary Nolan and Tina Kotek, along with Senators Avel Gordly, David Nelson, and Margaret Carter. I sent a copy to Bruce Goldberg, Director of DHS, and about 100 community members. My hope in doing that was I believed the letter might stir them to action. To the best of my knowledge I was wrong in both my hope and belief. In fact, I never heard back from any of these people regarding my letter.
We are living in a state where both accountability and transparency are virtually nonexistent. The people in Oregon are so concerned with not upsetting the apple cart (status quo), that they’d rather allow domestic violence, financial exploitation, medical neglect, and the abuse of developmentally disabled citizens to have gone unchecked than to seek accountability. That disturbs me to no end. And whoever reads this... what expectations do you have of those charged with protecting our most vulnerable? Is it ok with you that we just “move forward” without seeing why things went wrong in the first place, in order to TRULY move forward in a sane way? Are Oregonians in fact, cowards?
----------------------------------------
11/11/07
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 group home 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 allegations?
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.
Sincerely,
David McDonald
DAWG Oregon
I was (and continue to be) very concerned that the accountability for these actions was being placed on the abusers, while the higher-ups in the system who run things and are paid to know what’s going on, were all but ignored. I believed then, as I do now, that what is needed is a Legislative Hearing to see if there was a cover up to preserve people’s jobs, rather than expose the truth to the light of day.
I sent this email to Tim Krall of The Oregon Association of Rehabilitation, Bob Joondeph of Oregon Advocacy Center, James Toewes of Seniors and People with Disabilities, Tina Kitchen of the Department of Human Services, Bill Lynch of the Oregon Council on Developmental Disabilities, and the Oregon Network through the DD Coalition. All these folks held the answers to questions that needed to be answered.
I also cc’d the letter to State Representatives Mary Nolan and Tina Kotek, along with Senators Avel Gordly, David Nelson, and Margaret Carter. I sent a copy to Bruce Goldberg, Director of DHS, and about 100 community members. My hope in doing that was I believed the letter might stir them to action. To the best of my knowledge I was wrong in both my hope and belief. In fact, I never heard back from any of these people regarding my letter.
We are living in a state where both accountability and transparency are virtually nonexistent. The people in Oregon are so concerned with not upsetting the apple cart (status quo), that they’d rather allow domestic violence, financial exploitation, medical neglect, and the abuse of developmentally disabled citizens to have gone unchecked than to seek accountability. That disturbs me to no end. And whoever reads this... what expectations do you have of those charged with protecting our most vulnerable? Is it ok with you that we just “move forward” without seeing why things went wrong in the first place, in order to TRULY move forward in a sane way? Are Oregonians in fact, cowards?
----------------------------------------
11/11/07
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 group home 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 allegations?
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.
Sincerely,
David McDonald
DAWG Oregon
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