Broken system allowed theft, exploitation, isolation and abuse to continue
Broken system allowed theft, exploitation, isolation and abuse to continue Earlier this year, former professional guardian Traci Hudson pleaded guilty to 19 felony charges involving exploitation and abuse of elderly people under her care. The ABC Action News I-Team has been reporting about Hudson and her guardianship cases for years. Her cases shows systematic failures within Florida’s professional guardianship system, which was designed to protect the state’s most vulnerable residents.
By:
Adam Walser
CLEARWATER, Fla. —
Earlier this year, former professional guardian Traci Hudson pleaded
guilty to 19 felony charges involving exploitation and abuse of elderly
people under her care.
The ABC Action News I-Team has been reporting about Hudson and her guardianship cases for years.
Her
cases shows systematic failures within Florida’s professional
guardianship system, which was designed to protect the state’s most
vulnerable residents.
Sentence came seven years after her first crime
Hudson’s first guardianship case was assigned in April 2016.
Records show she stole from one of her wards starting in August 2016, just four months after her first appointment.
It took seven years for her to finally stand trial and plead guilty.
“She’s gonna be receiving an eight-and-a-half-year Department of
Corrections sentence followed by 20 years of probation,” Richard McKyton
said in sharing the sentencing agreement in open court on July 10.
That hearing was delayed because Hudson was found unresponsive in a local hotel after what police reports describe as a suicide attempt in April.
Several
family members of her former wards and guardianship reform advocates
attended the hearing in which Hudson entered her plea.
“Eight and a half years is not enough for what she’s done to so many families,” Lesa Martino said.
“I
made quite a few complaints to the office of public and professional
guardians about Traci Hudson—only to be called a conspiracy theorist,
that none of this was going on,” said guardianship reform advocate
Hillary Hogue. “Until thankfully, with, of course, Adam Walser of ABC
Action News in Tampa, uncovering the crimes that were being committed.”
WFTS
Hillary
Hogue is a guardianship reform advocate who reported Hudson's suspected
criminal behavior multiple times before Hudson's arrest
Gun thefts date back to 2016
Hudson was charged with stealing guns and other property owned by her ward, Robert Moore, in August 2016.
Ryan says Hudson neglected his elderly father’s needs but stole his gun collection.
Ryan Moore
Ryan Moore and his later father, Robert Moore
Records from the Pinellas County Sheriff’s Office show Hudson sold
the guns at multiple pawn shops in Pinellas and Pasco counties.
Police
reports say Hudson whited out the guns from her original inventory
report and submitted fraudulent documents to the court.
“I asked
her about the guns, and she said all the guns had been stolen except for
one, and it was in a police evidence room somewhere,” Ryan said.
Father was isolated, daughter loses home
“My father was exploited, isolated while Traci was the guardian of my father,” Lesa said.
WFTS
Lesa Martino
In 2017, Lesa reported to state agencies that Hudson abused and financially exploited her father, Roland.
She also wrote disparaging remarks about Hudson on social media.
“Traci
filed a libel/slander lawsuit against me in 2018. And this is when she
was committing crimes already, and so I ended up losing the case, and I
ended up losing my house to Traci,” Lesa said.
The I-Team was there in February of 2022 when Lesa was thrown out of her home and most of her belongings were taken to the dump.
“I was a witness to the corruption and then I get punished,” Lesa said at the time.
Hotel owner put into guardianship after selling property to relative
“My great aunt ran her business for many years until the guardianship
process started,” Gedi Pakalnis said on the day we first met him at a
guardianship reform protest in St. Petersburg in early 2019.
A
realtor petitioned the court to put Dirse into guardianship after Dirse
sold part of her hotel for a below-market price to her great-nephew
Pakalnis, who lived with her and helped her for 15 years.
WFTS
Gedi Pakalnis
“He was taking property from Mrs. Dirse for less than fair market
value,” Pinellas County Probate Judge Pamela Campbell said during a
hearing in which Hudson tried to reverse the sale of the property.
Hudson filed an eviction against Pakalnis and used Dirse’s money to sue him.
“She’s trying to get her hotel back. She didn’t sell it to him,” said Hudson, who was known as Traci Samuel at the time.
Hudson
moved Dirse to assisted living and obtained a no-contact order from
Judge Campbell, which prevented Pakalnis from visiting or calling her.
“She doesn’t want him to see her. I’m respecting the privacy of her,” Hudson said.
The
I-Team tried to visit Dirse to determine whether she had the capacity
to live independently after an attorney assigned to represent her
recommended she not be put into guardianship, but Hudson denied our
request.
During court proceedings, Judge Campbell praised Hudson, who went by the last name Samuel at the time.
“I
know Ms. Samuel to be a good and professional guardian. She’s on a
number of the cases that I have,” Judge Campbell said in response to
complaints from Pakalnis about the treatment of his relative.
Dirse died alone in an assisted living facility in 2020 from COVID-19.
Her estate paid more than $287,000 in guardian and attorney fees.
Pakalnis didn’t get to see or talk to his great-aunt during her final two years.
“We
wish that the last two years away from her family and away from her
home would not be lost to her. That things could have been different for
her,” Pakalnis said during a memorial service on the beach near Dirse’s beloved home.
WFTS
Gedi Pakalnis speaks at memorial service for Genyte Dirse
Pattern of thefts, lies and abuse uncovered
In November
2019, Hudson was arrested after investigators say she took $541,000 from
a 93-year-old dementia patient under her care.
Pinellas County Sheriff's Office
Traci Hudson being arrested in 2019
Investigators discovered she used a power-of-attorney agreement to pay herself $1,600 from his bank account.
Hudson used the money to buy tickets to Tampa Bay Bucs games, purchased clothes and jewelry and closed on a 4,800 square-foot home in Riverview, which she later sold for a $250,000 profit.
“That
case that she was charged with is a power of attorney case. Totally
different from our guardianship cases,” Judge Campbell said at a hearing
the day after Hudson’s arrest.
Campbell ordered the Pinellas County Clerk’s Office to investigate Hudson’s 45 guardianship cases in Pinellas County.
She also was assigned cases in Hillsborough County at the time.
Hudson resigned from all her cases after her 2019 arrest.
“If there are any red flags that are brought to our attention, then we will address that at that point in time,” Campbell said.
Three years later, a 77-page report filled with red flags not only exposed problems with Hudson’s cases but also with the guardianship system.
WFTS
77-page report identified dozens of issues with Hudson's cases
“What it produced was just evidence of flagrant fraud,” said retired
Pinellas County Circuit Court Judge Linda Allan, who previously served
as a probate judge.
“There’s
very little direct oversight of what the guardian does,” said Pinellas
County Clerk of Court Ken Burke, who oversaw the report.
WFTS
Pinellas County Clerk Ken Burke
The report shows Hudson was paid $406,000 from her wards’ assets.
Seven times she billed for working between 25-and-39 hours in a single day.
“There was not just a single instance but many instances of billing more than 18 hours in a day,” Burke said.
The
report says she paid realtors who served with her on the guardianship
association board commissions of up to 16% and sold homes without
appraisals at below-market prices.
One home, which belonged to one of Hudson’s wards, sold three times in a single day.
The first time, it sold for $30,450, the second time for $37,000 and the third time for $57,984.
That
represented a 90% increase from the first sale to the third, but the
ward didn’t share in any of that money… the realtor and first two buyers
did.
That investigation led to additional charges in 2021 and 2023.
WFTS
Judge Pam
Campbell ordered the Pinellas County Clerk's Office to investigate
Hudson's cases, which resulted in new felony charges in 2021 and 2023
Replacement guardian finds evidence of neglect
After her arrest, evidence emerged that she not only stole from her wards but also failed to properly care for them.
The
guardian appointed to replace Hudson found that Dirse, who had several
medical conditions, had not been to a doctor or a dentist while under
Hudson’s care.
On
a report filed in court records about her first visit to Dirse’s home,
the new guardian wrote, “Nothing has been done, not even food out of the
refrigerator. Speechless!”
Hudson failed to fix a broken window at Dirse’s home, resulting in $250-a-day fines from the City of St. Pete Beach.
The fines eventually totaled $45,750.
Hudson
got permission from Judge Campbell to transfer $100,000 from Dirse’s
investment account to pay for repairs, but they were never done.
Hudson's attorney: "There's very little oversight"
Hudson will be 83 years old when she completes her prison time and probation.
The same age as many of her victims.
“That
is not a perfect system, if you will. There’s very little oversight,”
Hudson’s defense attorney Richard McKyton said outside the courthouse
after her sentencing.
McKyton says his client wasn’t the only one to blame for what went wrong in so many of her cases.
“None
of these choices get made until the attorney for the estate or the
guardianship reviews the request, whatever that might be. And not until
an actual judge signs off on those things,” he said.
“She blames the system. But she’s part of the system, and she had to know that what she was doing was wrong,” said Martino.
We contacted Hudson at the Lowell Prison Annex, where she is serving her sentence, and requested an interview.
We have not heard back from her.
You
can find the I-Team’s decade-long investigation into the many problems
with Florida’s guardianship system by viewing our entire “Price of Protection” series.
Derrick Dahl, seen in this undated photo, was diagnosed with a tumor. His mother pushed for him to see a cancer specialist.
By Brad Schmidt | The Oregonian/OregonLive
The diagnosis felt like a death sentence.
Pam
Dahl had just driven four hours to visit her adult son, Derrick, at the
southern Oregon group home where he received round-the-clock care. A
gaunt man with dark hair and blue eyes, Derrick Dahl, 35, was diagnosed
in childhood with developmental disabilities that leave him largely
unable to communicate.
During the March
2018 visit, Dahl’s mother recalls a caregiver saying in passing that
her son had been diagnosed with a dangerous tumor.
Pam Dahl was shocked. She pressed for more information.
She
remembered the caregiver saying her son’s tumor was discovered almost
six months earlier but doctors thought surgery would be risky. Pam Dahl
said she was told that the tumor could be deadly if left untreated.
Doctors hadn’t scheduled Dahl for an operation.
Successfully
pushing for a fresh examination of her son’s case led to another shock.
A cancer specialist gave her hope Dahl’s tumor could be treated. She
talked to a Portland doctor who was able to remove a baseball-size mass
from Dahl during a November surgery.
“Somebody,
somewhere, should have said, ‘You need to get a second opinion,’” Pam
Dahl said of the care her son received. “You’ve just given this person a
diagnosis of dying.”
Her effort to
help her son highlights holes in a state safety net meant to protect
vulnerable Oregonians who cannot advocate for themselves. It provides a
cautionary tale for any family that lacks legal guardianship of a loved
one who, because of a developmental disability, cannot make medical
decisions.
The Oregonian/OregonLive
spent six months investigating Derrick Dahl’s case to pinpoint why he
didn’t see a cancer specialist until his mother stepped in. The newsroom
reviewed more than 3,000 pages of medical documents, business filings,
licensing records and state rules for appointing health care
decision-makers for adults with developmental disabilities.
The investigation uncovered such profound
flaws in the system that state officials scrambled to fill gaps as the
newsroom’s inquiry was underway, writing new legislation in March to
formally endorse the process for the first time.
Among the newsroom’s findings:
Oregon’s
rules to protect individuals with developmental disabilities are on
shaky legal ground. Lawmakers never told the Department of Human
Services how people should be appointed to make medical decisions for
vulnerable adults like Dahl, or what qualifications are needed to fill
that role. The agency is now asking the Legislature to ratify its
existing practices. But the state’s omission could leave it vulnerable
to lawsuits from families who believe bad decisions were made.
The
department can’t quantify how many Oregonians lack a voice in their own
health care. The Department of Human Services doesn’t track when
medical decision-making is delegated because officials don’t want to
collect the paperwork centrally. The Legislature approved money for a
computer system six years ago, but officials spent it on other needs.
Data is now managed across Oregon’s 36 counties through a hodgepodge of
spreadsheets and sticky notes.
Family
members can be left in the dark. The person listed as Dahl’s appointed
decision-maker as of December wouldn’t allow state or hospital officials
to release his medical records to his mother. That decision-maker, like
her predecessor, is a former employee of the nonprofit that manages the
Medford group home where Dahl lives.
The
Alternative Services employment and rental arrangements are legal, and
the nonprofit says interested parties were not involved in approving
them. There is no evidence the family member involved in Dahl’s care
approached the role differently than other decision-makers.
The Department of Human Services defended the state’s track record of care while acknowledging room for improvement.
Lilia
Teninty, director of Oregon’s Office of Developmental Disabilities
Services, would not answer questions about Dahl’s case, citing his right
to privacy. But she pointed to a recent study by national advocacy
groups ranking Oregon the second-best state in America for serving
individuals with developmental disabilities.
“I believe Oregon’s system is better than other states’ systems,” Teninty said.
State
officials similarly believe their process for appointing
decision-makers is appropriate under current law. But prompted by the
newsroom’s inquiries, Teninty’s office is pushing Senate Bill 1039 to
“strengthen the statutory language” for making appointments within a
system established two decades ago.
The legislation doesn’t create any new
qualifications for medical decision-makers, nor does it say how much
independent medical expertise should be enlisted in cases like Dahl’s.
In fact, while the bill for the most part is a carbon copy of department
rules, it removes any direct mention of a second opinion as a factor
for decision-makers to consider in weighing a major medical procedure.
People
with developmental disabilities are more likely than others to face
significant physical ailments, according to a federal report. They also
face bigger barriers to receiving preventative care and high-quality
medical services.
Because the state does not track the
number of vulnerable individuals like Dahl who are in need of a medical
decision-maker, the newsroom did. The Oregonian/OregonLive contacted
regulators for each county. Four refused to share figures while three
others provided only estimates.
The
newsroom survey identified at least 1,325 Oregonians with developmental
disabilities who cannot make their own medical decisions and cannot
appoint someone in their place.
For Dahl, the failure to pursue surgery earlier has resulted in a blame game.
It
took a formal complaint with the state for Dahl’s mother to get him the
medical opinion that led to his surgery. But the state also responded
to the mother by revisiting her long history of being hard to contact.
State officials told the newsroom that in general a complaint regarding
failure to seek additional medical advice would not be investigated as a
potential case of abuse or neglect.
Pat Allen-Sleeman, executive director of
the nonprofit that runs Dahl’s group home, accused Pam Dahl of trying to
exploit her son by talking to a reporter. She said Derrick Dahl had
“nothing to gain” from an article being published.
The
Alternative Services executive did not respond to the newsroom’s
request to meet with Dahl and explain to him what this article would
say.
“There is really no story here to
tell, except misinformation, a dramatic self-serving version and an
inaccurate and harmful story,” Allen-Sleeman said. “I know what we have
done, and I know what his family has done or not done.”
According
to Allen-Sleeman, Dahl didn’t see a cancer specialist because two
doctors in Medford “denied” their requests. Providence Medical Group
rejects her assertion, and Providence medical records do not show any
refusals.
Providence, whose doctors
initially evaluated Dahl, stands by the physicians’ work and says the
decision to monitor the tumor, without operating, was appropriate given
the risks posed by surgery and uncertainty about whether the tumor was
cancerous.
Dahl’s mother said she has
no intention of suing any of the organizations involved. She said she
only wants to understand what she sees as a system failure.
“It’s just so upsetting,” she said. “I can’t believe this has happened, and I hope it hasn’t happened to other families.”
CHILDHOOD
Dahl’s
mother was a few weeks shy of 20 when she gave birth in the spring of
1983. She tended tables at a restaurant in Yachats overlooking the
Pacific Ocean. Her husband, Tom, worked for his family’s garbage
disposal business.
Dahl almost died
when he was just 8 months old, the victim of a high fever and severe
seizures, his mother said. He stopped breathing one night, but an
ambulance trip to the hospital kept him alive.
He likely had epilepsy, Pam Dahl remembered being told.
“And I thought that was the worst thing in the world, right?” she said. “But I wish it would have just been that.”
She soon realized her son wasn’t developing like other children. Dahl didn’t walk until 18 months. He didn’t talk.
When
Dahl was 3, his mother finally accepted the fact that her son had a
life-altering developmental disability. “It was pretty obvious,” she
said. “You don’t want to believe it.”
Pam
Dahl is the mother of Derrick Dahl, a 35-year-old man with
developmental disabilities who lives in a group home in Medford. Beth
Nakamura/Staff
Dahl’s
mother recalled that period of her life as draining and hopeless. She
had a second son, in 1986, but eventually packed up for the Eugene area
and divorced in 1990.
“Having a child with special needs is pretty hard on a marriage,” she said. “It just fell apart.”
Both boys lived with their father at
first. But Dahl joined his mother sometime in the mid-90s, Tom Dahl
said. A bus picked Dahl up each morning, shuttling the growing boy in
diapers off to special education classes at public school.
By
the time Dahl became a teenager, his mother said she found it difficult
to meet his needs. When he was 15, she asked the state to move him into
a state-licensed home, records show.
Dahl’s
mother said she talked to a lawyer about becoming his legal guardian
and decision-maker when he turned 18. She decided against it, worried
that the state might make her pay for his care.
That
concern was likely unfounded. Tim Nay, a Portland attorney with 35
years’ experience in guardianship proceedings, told the newsroom that
Oregon would not ask a guardian to bear the cost of providing care for
an adult with developmental disabilities.
But
Dahl’s mother says she didn’t know that, and his needs were immense. He
has been diagnosed with, among other things, cerebral palsy, epilepsy,
osteoporosis, a developmental non-verbal disorder and “profound mental
retardation,” according to his medical records.
“I
can’t afford to care for him like they care for him,” she said of the
state system, which allocates about $525 million annually for adults
with developmental disabilities in group and foster homes.
Dahl’s mother, who now bartends at a pub
in the coastal city of Yachats, said she trusted his caregivers and had
no reason to worry about his care.
Until the day she learned about his tumor.
THE TUMOR
Why
did it take so long for a surgeon to move ahead with surgery for Dahl? A
partial picture emerges from more than 2,350 pages of medical records
his mother obtained in recent months with assistance from The
Oregonian/OregonLive.
Dahl’s tumor was
detected in October 2017 during one of his frequent trips to the
hospital. Caregivers had noticed a brownish discharge from a special
tube used to deliver medicine to his stomach. Doctors wanted to know
why.
A CT scan revealed a 7-centimeter mass in his lower right abdomen.
Dahl’s
primary care physician at Providence in Medford, Dr. Andrean Gurov,
reviewed the case. Gurov’s notes say that the mass was “concerning” for a
sarcoma, a cancerous tumor that grows in soft tissue. Sarcoma cases are
rare, with fewer than 13,000 diagnosed in the United States each year.
Doctors noted that Derrick Dahl's tumor could be a sarcoma, a rare cancer that grows in soft tissue.
Surgically removing a sarcoma is the only cure, according to the American Cancer Society.
“These
tumors are hard to treat and require both experience and expertise,”
according to the society’s website. “Studies have shown that patients
with sarcomas have better outcomes when they’re treated at specialized
cancer centers that have experience in sarcoma treatment.”
After the initial evaluation, a caregiver
at Dahl’s group home called Gurov’s office requesting a second opinion.
Gurov left a message for a medical assistant in Dahl’s file: “Does she
mean a referral to a specialist?”
“Yes referral for a specialist,” the response read.
Dr.
John M. Kane III, chief of sarcoma surgeries at Roswell Park
Comprehensive Cancer Center in Buffalo, New York, said an oncologist
generally would prefer to be brought in as early as possible in
reviewing any case where a sarcoma is suspected.
Dahl’s
tumor was nearly twice the size of a golf ball, the threshold at which
Kane said the likelihood of a sarcoma starts to increase.
“And
that’s when I think it’s worth having that expertise,” said Kane, who
helped write national guidelines for treating sarcomas.
The records give no indication that Providence referred Dahl to a specialized cancer center or an oncologist.
Instead,
the records show Gurov’s office referred Dahl to Dr. W. Brad Craft,
listed by Providence as one of its general surgeons practicing in
Medford.
Providence declined to say how
many sarcomas Craft removed, stating only that Craft treats tumors “as a
routine part of his practice.”
Craft’s
notes from his November 2017 consultation say he thought Dahl’s mass
could be a sarcoma but that the true diagnosis was unknown.
The tumor’s position made surgery risky,
Craft noted. It was close to a muscle in the lower back and two
essential blood vessels. In addition, Gurov and Craft believed surgery
risked multiple complications such as kidney failure, infection, blood
clots and pneumonia, according to a statement Providence provided the
newsroom.
The “operation would be a major procedure and a significant ordeal for Derrick to undergo,” Providence said.
Medical records show that a doctor wasn't clear who could authorize surgery for Derrick Dahl.
Craft
outlined various options in his notes, including a biopsy to determine
if the mass was cancerous. Doctors could monitor the tumor’s size over
time. If it grew, other medical problems would likely follow.
“Consideration
for hospice or palliative care could also be given to this patient
depending on what his health care committee decides,” Craft wrote.
Craft’s
notes highlighted the difficulty of treating Dahl. Although many
caregivers were involved, Dahl’s doctor didn’t know the full name of the
person who could make decisions on his behalf.
“It is unclear to me,” Craft wrote, “who would give legal consent.”
A DECISION
The
person responsible for making Dahl’s health care decisions was Kelli
Lindenberg, according to notes taken by his primary care doctor and the
surgeon at Providence.
Lindenberg, a former employee of Alternative Services, knew Dahl because she had worked in the home where he lived.
She
subsequently told The Oregonian/OregonLive that she was “not fully 100
percent” sure she had been appointed Dahl’s decision-maker.
Lindenberg
held a crucial role in the system devised by the Department of Human
Services a quarter-century ago to protect vulnerable people like Dahl.
Oregonian
Housing
units at Fairview in Salem in 1963. The Oregonian's photo caption at
the time said, "Residents of Steel Cottage work on institution grounds.
Some have jobs in the community. Some of these patients attend the
Fairview school which goes through the sixth grade."
In
the 1990s, state officials began moving people out of a massive
state-run institution known as the Fairview Training Center, where
federal authorities documented a shameful record of inadequate care. In
its place emerged a system of homes statewide that today serves more
than 5,800 adults with developmental disabilities.
In
this new world of decentralized care, the department wrote rules to
ensure somebody looked out for group home residents who had no legal
guardians, were unable to make their own medical decisions and could not
appoint someone else to do it.
The
rules authorized a support team of caregivers, service coordinators and
family members to appoint a health care representative who acts on a
person’s behalf.
Dahl’s mother served
in that role until 2010, when she was removed because caregivers
couldn’t reliably get ahold of her, documents show.
Health care representatives like
Lindenberg generally have the authority to make medical decisions. In
the case of surgery, however, a health care representative’s decision
must be approved by the full support team.
The
rules say a health care representative can’t be an attending physician,
the physician’s employee, or someone who owns, operates or works for
the home where the person lives. A parent whose rights were terminated
is also disqualified.
Lindenberg told
The Oregonian/OregonLive she remembered signing an official form of some
sort that defined her role on Dahl’s support team. But she could not
definitively say whether or not she was officially named Dahl’s health
care representative.
Lindenberg isn’t the only one confused.
The
newsroom asked the Department of Human Services to quantify the number
of people with developmental disabilities across Oregon who must rely on
people like Lindenberg to make medical decisions for them.
State officials said they had no idea.
Oregon
rules say every health care representative must fill out a
state-approved form, or else the appointment is invalid. Under a
separate provision titled “safeguards,” the person’s support team must
submit facts and statistics about health care representatives to the
Department of Human Services.
But the department has chosen not to request any of this information.
The
Department of Human Services told caregivers to stop telling the agency
whenever a health care representative was appointed. The rationale? To
“eliminate paperwork and unnecessary workload” for state employees.
The
department has instead outsourced oversight of health care
representatives to a network of county agencies and nonprofits that
examine whether people are being appointed properly. State officials say
they perform quality checks on county-level work and expressed
confidence that appointments are in compliance with rules. In Multnomah
County, Oregon’s largest, officials say they review every health care
representative appointment.
Teninty,
the state’s director of developmental disability services, said it would
make sense to collect data on health care representatives only if the
agency had software capable of analyzing it. But records show the
Legislature gave the agency $2.4 million for such software in 2013, and
department officials spent all of the money on other priorities.
The
department had its hand out again for the upcoming budget, warning that
failure to provide $1.6 million in new money for the software will
“continue to compromise the state’s ability to provide oversight.” The
request did not make it into Gov. Kate Brown’s recommended budget.
It’s not clear who beyond Dahl’s health
care representative was involved in deciding what to do about his tumor.
The state declined to disclose names of members of his support team,
although some are identified in Providence records.
Lindenberg
said she could not remember meeting in person with the team,
communicating instead by phone and email to discuss Dahl’s tumor.
The
group was required to consider risks, benefits, alternatives and the
impact a proposed procedure might have on the individual’s lifestyle.
State rules also required them to consider other available information
“such as a second opinion.”
Lindenberg’s
memory of her conversation with a doctor at Providence is vague. But
she said the doctor left her with the impression a biopsy would be
dangerous. Lindenberg said she believed the tumor was, in her words,
“inoperable” and that “it was going be terminal for him.”
Craft
told The Oregonian/OregonLive in a statement that he explained to
Lindenberg in person all of Dahl’s options. Craft said Lindenberg told
him that she could not make a decision without talking first with Dahl’s
support team, and someone on the team was supposed to get back to
Providence.
“No additional requests were made,” Craft said.
The support team made its decision for
Dahl to not undergo surgery in November 2017, according to findings from
a subsequent state review.
Providence added an entry in Dahl’s medical file four months later.
“Deemed not to be a candidate for surgery or any procedure.”
His tumor was to be monitored for growth every six months.
THE INTERVENTION
Dahl’s
mother said she was panicked after learning her son had a potentially
deadly tumor that wouldn’t be removed. She filed a formal complaint with
the state on April 24, 2018.
What she
wanted was an additional doctor’s viewpoint. She wanted access to Dahl’s
medical records. She complained that she felt excluded from her son’s
life by members of his support team.
Pam
Dahl got a response May 30. Caregivers had tried to contact her
immediately after learning about the tumor in 2017, a Department of
Human Services official wrote, but they didn’t have her current contact
information. Dahl’s support team took his condition “very seriously” and
ultimately decided not to proceed with surgery.
Prompted
by her complaint, Dahl’s support team “is open to the idea of having a
meeting to discuss obtaining a second opinion,” the human services
official, Carolyn Sahr, wrote.
Pam
Dahl pushed for her son to be seen by a cancer specialist. As a result,
someone at Derrick Dahl's group home tried to set up a consultation.
Seven
months after the support team’s decision against surgery, caregivers at
Dahl’s group home took him to visit a nurse practitioner who is not a
Providence employee. The nurse practitioner referred Dahl to OHSU’s
Knight Cancer Institute.
Dahl’s mother
drove to Portland in July to meet with Dr. Kevin Billingsley, the chief
of surgical oncology, who specializes in sarcomas.
“I learned that there was hope,” she said of her meeting with the specialist.
Pam
Dahl said Billingsley explained that surgery was a viable option but
the risk to Dahl would increase because of his condition.
She
considered the alternative. She had watched her mother and
father-in-law whittled away by cancer. She said she couldn’t imagine her
son going through that.
“I said, ‘I’m willing to take the risk,’” she said.
It’s
unclear how or when Dahl’s support team agreed to the surgery, but OHSU
scheduled him to go under in November, the week after Thanksgiving. It
was more than a year after the tumor was found.
Dahl’s
mother was in the waiting room as Billingsley removed the large mass
from his abdomen during what she said was a 4½-hour procedure. Medical
records show Dahl did develop pneumonia, as Providence warned, and his
mother said he required treatment in intensive care.
But after 10 days at OHSU Hospital, doctors decided Dahl was healthy enough to head home.
SEARCH FOR ANSWERS
Dahl’s
mother had succeeded in getting the crucial advice that radically
altered the course of her son’s medical treatment. But, afterward, she
was left to wonder why the people responsible for his care hadn’t done
it themselves.
The newsroom helped
Dahl’s mother file formal requests with Providence and OHSU for his
medical records, and with the Department of Human Services for documents
the state used in assessing her initial complaint.
Providence
disclosed the documents to Dahl’s mother, later saying the company
conducted an “exhaustive search” of its files and could find no formal
record of a designated or legal decision-maker who would need to approve
her request.
But OHSU refused to
release records, as did the Department of Human Services. Both said
Dahl’s current health care representative, whom they would not publicly
identify, told them not to disclose the records. The state said the
health care representative believed disclosure would not be in Dahl’s
best interest.
According to records released by Providence, Dahl’s health care representative as of December was Shelly Noon.
Noon, like Dahl’s earlier health care
representative, Lindenberg, is a former employee of the company running
Dahl’s group home, Alternative Services. The nonprofit said neither
Lindenberg nor Noon were paid to serve as Dahl’s health care
representative. Noon declined to comment.
Brad Schmidt, staff
Alternative
Services-Oregon operates 37 group homes for adults with developmental
disabilities, including one in Medford where Derrick Dahl lives. Brad
Schmidt, staff
Allen-Sleeman, the company’s executive director, said she had no say over the decision not to release records.
The state’s decision not to disclose records conflicts with assurances the state gave Dahl’s mother in May 2018.
In
answering her complaint, the Department of Human Services told her that
managers at the group home submitted paperwork with Dahl’s doctor “to
add you to the list of people approved to see Derrick’s medical
records.”
Alternative Services is “not attempting to exclude you,” Sahr, the state employee reviewing Dahl’s case, told her.
Allen-Sleeman expressed dismay that Dahl’s mother received any of his medical records.
In
a series of emails with the newsroom, Allen-Sleeman argued that
Providence should not have disclosed the documents and contacted the
hospital to complain. She argued that disclosure violated Dahl’s right
to medical privacy and told the newsroom Dahl’s mother only has “access
to review” records or information, not to receive copies.
In the end, though, she agreed to talk to
The Oregonian/OregonLive about decision-making in Dahl’s case. Her
statements differ from the accounts of Lindenberg, Providence and Sahr,
the state official who answered the complaint from Dahl’s mother last
year.
Allen-Sleeman said caregivers did
seek an independent medical review of Dahl’s case long before his
mother intervened. In fact, Allen-Sleeman said, they asked two separate
physicians to provide referrals but were “denied.” She declined to name
the doctors involved.
Providence
records showed a request for a referral to a specialist in October 2017,
after which Gurov, the primary care doctor, sent Dahl to see Craft, the
general surgeon.
The records also say
Alternative Services later asked Gurov’s office to have Dahl see a
cancer specialist. But that request came in May 2018, after Pam Dahl
filed her complaint. The notes list Dahl’s mother as the person pushing
for the specialist’s opinion. Providence replied to the request by
saying Dahl needed to be seen by a surgeon before being referred to an
oncologist.
Gurov told The Oregonian/OregonLive he would not stand in the way of a referral.
“I
never refuse to refer patients for a second (or third) opinion,” he
said in a statement provided by Providence, “because it is my belief
that the patient is the center of our work and his/her opinion matters
the most.”
Gary Walker, a Providence spokesman, denied Allen-Sleeman’s assertions.
“At
no time was it Providence’s intent to prevent Derrick’s care team from
seeking an additional opinion,” Walker said in a statement. “Any
representation that Providence denied the care team an opportunity to
seek care from another source is not factual.”
AFTERMATH
Kim
Dayton, a professor emerita at the Mitchell Hamline School of Law and
expert in the ethics of health-care decision-making, said the people
making medical choices for Dahl should have pushed for him to see an
oncologist.
“You have to do, as a
decision-maker, what a competent person would do,” she said. “And that
would be, in my opinion, getting a second opinion.”
Pam
Dahl said she’s now taken steps to become more involved in her son’s
care. She believes members of the support team have made her a member,
which should give her greater access to his medical information and a
voice in significant medical decisions.
But
she said she received no response when she recently tried to confirm
her status in writing with her son’s coordinator of services.
Meanwhile,
the newsroom’s inquiries about Dahl and others in his situation
prompted officials at the Department of Human Services to re-evaluate
the system in place for two decades.
“You asked very good questions,” Teninty,
the state’s director of developmental disability services, told The
Oregonian/OregonLive. “We identified something we needed to strengthen
in legislation and statute.”
Lilia Teninty, director of Oregon's Office of Developmental Disabilities Services.
Agency
officials said they reviewed the rules introduced in 1996 to appoint
health care representatives for hundreds of Oregon adults -- and
discovered state law does not explicitly authorize them.
If
someone went to court challenging a health care representative’s
authority to make decisions, the state might not win, said Jeffrey
Dobbins, an associate professor at Willamette University who specializes
in administrative law.
Dobbins said
the current system “may not put the state at risk of financial
liability, but it certainly could gum up the works with respect to the
validity of existing appointments.”
The
department last month brought forward a bill that would essentially
ratify the existing process for naming a health care representative but
change the title “representative” to “advocate.”
As
with Oregon’s current system, the bill would not require health care
advocates to receive any training. Nor would it specify what additional
medical input should be sought in potentially dire diagnoses like
Dahl’s.
However, Teninty said training
requirements are “absolutely something we’re discussing” in the wake of
the newsroom’s investigation. Mandating a second opinion is also on the
table.
“I think that’s reasonable for
us to discuss and consider,” Teninty said, “especially around something
that might be terminal or life-threatening.”
THE FUTURE
Limited access to information about Dahl has led to one additional shock.
Dahl’s tumor apparently was not cancerous at all.
Although
OHSU Hospital would not talk about Dahl’s case, records released to his
mother by Providence summarize what Dahl’s OHSU surgeon discovered.
Rather
than a malignant sarcoma, doctors removed a tumor considered “classic
for schwannoma.” That type of mass is usually benign.
Your stories: Have you seen abuse or neglect in group homes?
In
the months since surgery, Dahl’s mother said she’s traveled twice to
Medford to spend time with her son. In March, she said she spent hours
playing games with Dahl and brought him a favorite treat, Lorna Doone
shortbread cookies.
“I’m definitely going to be visiting more often,” Dahl’s mother said. “I appreciate that he’s still here.”
Reporter Kaitlin Washburn contributed to this report.
Got a tip about Oregon’s developmental disabilities system? Contact me at bschmidt@oregonian.com
