By
Texas Right to Lifeon Memorial Hermann Southwest Hospital
informed Donald Jones on Thursday that they would pull the plug on his
wife against his directive in 10 days, scheduling her to die on May 13,
2019. The Texas 10-Day Rule forces everyday Texans to race against the
clock to save their loved ones. Donald now calls upon Texans to contact
their legislators to repeal the 10-Day Rule, a provision of the Texas Advance Directives Act.
Donald’s wife, Carolyn, is a
61-year-old African-American woman currently undergoing dialysis
treatment and is breathing with the assistance of a ventilator. Now he
is forced to race against the clock to protect his wife. Donald
contacted Texas Right to Life, which has assisted over 400 10-day
victims like this, including the prominent case of Chris Dunn at Houston
Methodist Hospital in 2015. Donald and Carolyn have been married
for 39 years, live in Beaumont, and have an adult daughter. Carolyn
suffered a stroke in December 2017 and has transferred between different
rehabilitation facilities since, landing in Memorial Hermann Southwest
in November 2018. Donald has stayed by her side throughout her recovery
and setbacks.
Carolyn is conscious but cannot communicate verbally due to intubation.
The hospital first attempted to
invoke the 10-Day Rule on March 8, 2019, but the Jones’ lawyer
negotiated with the hospital to pause the countdown. Since then,
Carolyn’s health has improved and three facilities in Houston have
agreed to care for her, pending Donald’s ability to secure Medicaid
coverage. Donald has spent the last two months trying to clear
complicated legal and financial hurdles to save his wife’s life, which
the hospital has scheduled to end on May 13, 2019.
Now, he’s begging Texas legislators
to eliminate the 10-day countdown for patients like Carolyn. “This law
has to be changed. How can I care for my wife when I’m forced into this
10-day situation?” said Donald. “This could actually happen to anyone.”
Texans who want to help Donald and Carolyn should contact their legislators with the form.
LOS ANGELES, May 2, 2019 /Christian Newswire/ --
One month ago today Rev. Kevin Manion was told by a hospital physician
that his mother was not responding to medical treatment. Patricia Manion
would have been 99 years old, had she not been euthanized that same
day.
Fr. Manion
is still grieving for his deceased mom. "I have difficulty sleeping at
nights, just thinking about what I saw. The hospital physician deceived
us. He didn't tell us he was going to take mom's life." "Pat"
Manion was diagnosed with pneumonia. Her medical treatment was having
positive results. Tests showed progress. More importantly, her family
and friends saw she was getting better. Then two days before her death, a
hospital case worker, unsuccessfully, began urging that Mrs. Manion
apply for Hospice.
In the meanwhile, Patricia was
regaining strength and was speaking with family. She clearly expressed
her intention to return to her home. The evening before she posed for a
picture with her grand daughter, Kielty. The next day she was supposed
to be released, not to Hospice, but to her home. About 2:00 p.m. she
spoke with 2 of her friends about returning home. They expected her
release.
The doctor had other plans. On mom's last
day he appeared nervous and pressured. He used his medical authority to
urge a change in protocol. He didn't show us medical test results, the
scans, the blood work. He simply told us, the patient was not responding
to treatment. He insisted on a "drip." He got his way. That afternoon
mom was dead. The physician wasn't even there when special nurses began
the "comfort" protocol.
Fr. Manion recalls, "There
was no comfort at all. It was a lie. Mom saw what was happening. We did
too. I was too weak to do anything. I didn't have the strength. They
loaded mom with 3 bags of morphine within an hour. Mom died in terror.
She was horrified. It was terrible. She wanted to go home, and she would
have gotten better. She always got better in the afternoons. They
should have left mom on the medical protocol or release her. They didn't
want mom to recover. This is what they do to old people. She was 98 and
was going to celebrate her 99th birthday in a few weeks."
Family members are still in shock. Why was their mother euthanized?
Britney
Spears attends the 29th Annual GLAAD Media Awards at The Beverly Hilton
Hotel on April 12, 2018 in Beverly Hills, California. (Jon
Kopaloff/FilmMagic)
By Nancy Dillon
Britney
Spears was ushered into a closed courtroom under tight security Friday
after asking to testify about her decade-long conservatorship, her
lawyer said.
The “Toxic” singer left about an hour later and was photographed walking barefoot to a car, according to TMZ.com.
A
minute order said the singer and both of her parents appeared at the
hearing and that the parties agreed to a “730 expert evaluation." It did
not describe the nature of the evaluation.
The conservatorship was left in place pending a follow-up status hearing Sept. 18, the minute order said.
Attorney
Samuel Ingham addressed the court before Spears’ arrival, saying he
wanted to make it clear the “status hearing was set at the request of my
client. She requested an opportunity to address the court in person.”
Ingham then asked the Los Angeles County probate judge to clear the courtroom for the pop icon’s privacy.
“She
intends to discuss issues related to her medical care, her minor
children and trade secrets,” he said before the judge ordered the
gallery closed to spectators.
At that point, Spears, 37, was escorted in through a back door. Her mother Lynne Spears was spotted by her side.
The Friday hearing was abruptly placed on calendar April 23, the same day TMZ reported the singer was finishing a 30-day stay at a mental health facility triggered by problems with her meds.
About a dozen fans waving #FreeBritney and #EndTheConservatorship signs protested outside Friday and milled in the hallways.
Spears won a restraining order
this week against her former self-styled manager Sam Lutfi, who has
fueled the #FreeBritney online campaign and now must keep his distance.
Fans carried signs outside the proceedings on Friday. (Nancy Dillon/New York Daily News)
The
superstar suffered a prolonged public breakdown more than a decade ago
and has been the subject of a conservatorship helmed by her father since
2008.
She took to social media last month to address rumors she was held in the mental health facility against her will.
“Hi,
guys. Just checking in with all of you who are concerned about me. All
is well,” Spears said in an Instagram video posted April 23. “My family
has been going through a lot of stress and anxiety lately, so I just
needed time to deal. But don’t worry, I’ll be back very soon.
“I
am trying to take a moment for myself, but everything that’s happening
is just making it harder for me. Don’t believe everything you read and
hear,” she said in the caption to the video.
Spears
canceled her second Las Vegas residency, “Britney: Domination,” earlier
this year, explaining in a Jan. 4 Instagram post that her father was
seriously ill and “almost died.”
Representatives later explained her dad’s colon had ruptured.
“We’re
all so grateful that he came out of it alive, but he still has a long
road ahead of him,” she wrote in her caption to a throwback pic of her
parents with her when she was little.
“I
had to make the difficult decision to put my full focus and energy on
my family at this time. I hope you all can understand,” she wrote.
Investigation found at least five employees at the mental health facility beat a man, and allowed other patients to join in.
Author: Andy Pierotti, Lindsey Basye GORDON, Ga. — The family of a mentally disabled Georgia man has
released video showing their loved one being repeatedly beaten by staff
hired to care for him.
Brian Jarrad, the family's attorney, said
the family wanted to release video of the 2013 incident now to warn the
public that neglect is happening at facilities all across Georgia.
“These are some of our most weakest, our most vulnerable citizens.
So, it’s important to know and watch and to see when they’re not being
cared for appropriately,” said Jarrard.
The Macon attorney represents 55-year-old Joey Cason. When Cason’s family could no longer care for him, they admitted him into Total Care, a facility in Gordan, Georgia, licensed to care for the developmentally disabled.
“Physically, he is not disabled. He is able to function physically, but he is severely mentally disabled," explained Jarrard.
Surveillance video recorded on November 7, 2013 shows staff
repeatedly hitting Cason with belts, punching him on the ground and
allowing other residents to hit him.
At one point, staff appears to be taunting Cason with food and laughing at him.
“I think anybody would find the video despicable,” said Jarrard. “It
was heartbreaking. It made me angry to think of individuals who were
being paid to care for him were engaged in just despicable abuse.”
Gordon Police charged a caretaker named Shakia Smith with battery and abuse/neglect of an elder person.
Jarrard
said the case against the former facility owner is still pending.
Carson is now at a different facility in south Georgia and is doing
well, Jarrad said.
Total
Care’s former owner, Pamela Reaves, declined to comment about the
pending litigation. Her attorney, Wayne Kendall, did not return
follow-up questions sent by email.
The video’s release comes on the heels of Georgia seeking to end
nearly 10 years of federal supervision of its mental health care
services. The Reveal Investigation also uncovered a rise in abuse,
neglect and exploitation at state licensed mental health care providers.
Tune
into 11Alive Thursday night at 11 p.m. for The Reveal's investigation
into Georgia mental health providers and other abuse claims against
facilities across the state.
CENTRAL ISLIP - An East Islip group home worker is accused of
harming a man with autism who was in his care and later trying to cover
up the incident.
According to court documents, 31-year-old
Richard Garnett, of Middle Island, forced the victim to run on a
treadmill to "tire him out" and refused to let him off. Joseph Barouch,
23, eventually fell. At that point, Garnett allegedly did not report the
injury or seek medical attention for Barouch, out of fear of being
fired.
The alleged incident happened Feb. 19 at a facility called Life's WORC.
Barouch's family sent News 12 photos taken after the
alleged abuse that show bruising around his body. Authorities say he
fractured his neck as result of the incident. Relatives say Barouch had
to undergo two surgeries to replace discs in his neck.
Erin
Spano, Barouch's aunt, says she's horrified by what happened. She adds
that before being put on the treadmill, her nephew was ripped out of bed
while still undressed and dragged to a basement. And once on the
treadmill, she says Barouch was beaten when he got back up after
falling.
"This is attempted murder," she says. "They tried to kill my nephew."
Garnett
has been charged with one felony count of endangering the welfare of a
disabled person. He was released without bail and is due back in court
next month.
A spokesperson for Life's WORC says Garnett has been let go.
By Pamela B. Teaster, Ph.D. & Holly Ramsey-Klawsnik, Ph.D.
The United States population of adults aged 65+ is expected to double
by 2030. The growing segment of the population are people aged 85+,
often those most likely to need increased assistance as they experience
physical and/or cognitive changes. Adults may designate (or be
designated) a guardian to make financial or health care decisions, or
both, typically appointing a family member. Most guardians endeavor to
ensure the best quality of life for those they serve by making
responsible decisions about the person’s health, safety, and finances.
Guardians are controlled by state law and have a relationship with
the protected person that is delegated by a court and rooted in trust.
It derives from a state’s parens patriae power or duty to act as a parent for those considered too vulnerable to care for themselves. Requirements
for who should serve as guardian differ by state and type. Some states
require that guardians have specific training and pass a test; others
only require that guardians are willing to serve and do not have a
felony conviction. Approximately 75% of guardians are family members or
friends. In 2016, the National Center for State Courts estimated that
guardians across the country supervise 1.3 million adults and an
aggregate of $50 billion of their assets. Also in 2016, the GAO reported
that in just eight cases it examined in six states, guardians had
stolen more than $600,000 from those whom they were entrusted to
protect.
Elder abuse by surrogates such as guardians, whose job it is to
manage and advocate for a protected person’s health and well-being, is a
serious and growing problem identified by Adult Protective Services
(APS) programs. It is urgent to develop informed strategies for
preventing and ending elder abuse by those holding a duty to protect.
Funded by The Retirement Research Foundation, the team of Drs. Pamela
Teaster, Cory Bolkan, Kenneth Gerow, and Holly Ramsey-Klawsnik (from
Virginia Tech, Washington State University, University of Wyoming, and
NAPSA respectively) is working with six APS programs (CA, FL, NV, NH,
NC, and TX) to systematically study this problem.
The study addresses guardians, powers of attorney, and representative
payees and is exploring the nature, extent, and impact of maltreatment
by perpetrators designated as surrogate decision makers compared to
abuse perpetrated by others. The researchers hope to illuminate this
problem, inform prevention and intervention, and report findings by July
2020.
Former city councilor and attorney, Jodi Zils Gagne, 43, of Bristol
was given a 46 month sentence followed by three years of supervised
release by U.S. District Judge Vanessa L. Bryant in Hartford.
Gagne was sentenced for stealing more than $169,000 from individuals
for whom she served as a court-appointed conservator, reported a press
release from the United States Attorney’s Office of the District of
Connecticut.
According to court documents and statements made in court, the press
release said, Zils Gagne, an attorney, was a court-appointed conservator
for several individuals in Connecticut.
The release explained a conservator is a person appointed by the
probate court to oversee the financial or personal affairs of an adult
who is incapable of managing his or her finances or unable to care for
himself or herself.
Beginning in approximately May 2015, according to the Department of
Justice, Zils Gagne defrauded several conserved individuals by
misappropriating their money and overbilling them. The money that Zils
Gagne misappropriated was intended for the conserved persons’ medical
care, housing, bills, personal expenses, and legitimate conservator
fees. Zils Gagne also misrepresented, or failed to disclose, material
facts about her conservatorship activities to the Bristol probate court
and others, said the release.
Through this scheme, the justice department said, Zils Gagne
defrauded six victims of a total of $169,402.74. She defrauded one
elderly victim of approximately $136,000, and appropriated $113,000 of
that money under the guise of an “investment” when, in fact, it was a
10-year note that paid only a prime rate and was signed between her (as
the victim’s conservator) and Zils Gagne’s husband, said the Justice
Department. The money was used to fund her husband’s start-up company, a
Bristol-based internet radio station, Bristol Beat.
The terms and details of this transaction were only disclosed after
extended proceedings in the probate court, during which Zils Gagne
repeatedly lied, sometimes under oath, to the probate court, said the
Justice Department.
The investigation also revealed that Zils Gagne arranged the sale of
two victims’ houses to her relative for less than the appraised value of
the homes, said the news release. The buyer than renovated the homes,
sold them for a substantial profit, and paid Zils Gagne and her husband
kickbacks.
On Oct. 10, 2018, Zils Gagne pleaded guilty to one count of mail fraud.
Judge Bryant ordered Zils Gagne, who is released on a $50,000 bond, to report to prison on July 8.
In September 2018, a Connecticut Superior Court judge suspended Zils Gagne from the practice of law.
This matter was investigated by the Federal Bureau of Investigation
and the Greenwich Police Department, with the assistance of the
Connecticut Office of Chief Disciplinary Counsel and the New Britain
State’s Attorney’s Office. The case was prosecuted by Assistant U.S.
Attorney David T. Huang.
Elder abuse has been steadily increasing in Pennsylvania for the past
decade, with 28,633 reports of abuse received by the state in fiscal
year 2016-2017, according to the Pennsylvania Department of Aging.
The increase in the number of elder abuse reports in Pennsylvania is
likely the result of both the aging population and efforts to increase
awareness of elder abuse by local, state, and national advocates for the
elderly.
Elder abuse can be physical, financial, or in the form of neglect and,
unfortunately, can be perpetrated by legal guardians -- those appointed
to care for the elderly individual.
In 2018, Pennsylvania updated its guardianship rules to create more
checks against guardian abuse, to make them more accountable, to allow
family and others to intervene on the elderly individual's behalf, and
to expand who can object to a guardian's appointment. The revisions go
into effect on June 1, 2019.
According to the state's Office of Elder Justice in the Courts,
a guardian is responsible for making certain decisions on behalf of an
adult of any age who is deemed incapacitated by a court. A guardian can
be a family member or an unrelated third party, and the decisions
guardians make include financial, medical, and personal matters that the
incapacitated person has been determined to be unable to make on his or
her own.
Caring for an aging individual and handling personal and financial
affairs can lead to emotionally fraught and sometimes highly contentious
situations within a family. The new rules are intended to ensure the
guardian is fulfilling all of the required duties and may help to head
off or resolve disputes between families and guardians before they reach
court.
The latest ruling in an ongoing battle over the guardianship of
Genevieve Bush illustrates how family disputes can turn into a
long-running drama, especially in the case of incapacitated family
members. (In the Matter of Genevieve Bush, an Incapacitated Person, No. 1686 EDA 2018, Pa. Superior Court, March 19, 2019.)
When Genevieve Bush executed a will in 2004, she named her three sons
and one daughter as beneficiaries. Two years later, Bush revised her
will to name only her daughter as beneficiary; Bush also executed a
durable power of attorney and a durable power of attorney for
healthcare, both of which named her daughter as agent. In 2007, Bush
executed a pour-over will and revocable trust with the same dispositive
scheme as the 2006 will, and another durable power of attorney for
healthcare naming her daughter as agent.
In litigation that ensued thereafter in 2011, the trial court
determined that Bush suffered from an incapacity at least as early as
2006, adjudicated her an incapacitated person, and named one of her sons
and her daughter as co-guardians of her person and another son as
guardian of her estate. The trial court also voided the power of
attorney under which the daughter was appointed as agent. The trial
court did not address the validity of Bush's other documents. The
Superior Court affirmed the trial court's decision. A few years later in
2013, the trial court removed the son and daughter as co-guardians of
Bush and appointed a third party as guardian of Bush's person. The
Superior Court again affirmed.
Most recently in 2018, Bush's sons petitioned the trial court to void
their mother's planning documents, arguing interference with the
guardian's responsibilities.
The trial court held, and the Superior Court affirmed on March 19, 2019
that the sons did not demonstrate that an actual controversy was
imminent such that the court should act on the sons' petition. Those
with an interest in her estate "will not be injured by waiting until the
ordinary course of judicial proceedings that will occur upon the death
of [Bush]," said the trial court.
While the state's new guardianship rules might not have helped to avoid
the problems that arose in this case, the increased oversight of the
new rules may help reduce or even eliminate issues for other families
before they start or before they escalate.
A House committee heard testimony Wednesday on a 14-bill package that targets the abuse of Michigan’s elderly. (MGN Image)
LANSING, Mich. — A House committee heard testimony Wednesday on a 14-bill package that targets the abuse of Michigan’s elderly.
The
bipartisan 14-bill package calls for changes in state law to make it a
crime to assault or restrain an elder adult; the language also defines
an elder adult as anyone 65 years old and older.
Democratic Rep.
Sarah Anthony of Lansing said she has heard stories from people in her
district who have been abuse or taken advantage of, either financially,
emotionally or physically. She said some people may feel ashamed of the
situation, especially if the abuse is from someone they know, trust and
love.
“I think what’s at state is their livelihood, their peace of
mind, so if we can put in some tougher laws that actually tackle that
and address it, I think that we are able to really just protect the
people in our state,” Anthony said Wednesday after the House Committee
on Families, Children and Seniors.
The language in the bill package would also expand a provision of
state law prohibiting embezzlement from a vulnerable adult to include an
elder adult.
The bill package comes after Attorney General Dana
Nessel launched an elder abuse task force aimed at cracking down any
abuse targeting Michigan’s seniors.
“More than 73,000 older adults
in Michigan are victims of elder abuse. They experience physical abuse,
financial exploitation, emotional abuse, or neglect. The symptoms and
treatment of abusue against our most senior population are complex and
demand a concerted effort by this state to tackle what is often
unrecognized and unreported social problem,” Nessel said during the task
force launch event in March. “That’s why we have brought together
dozens of different organizations to work collectively and
collaboratively to tackle the challenge.”
In Michigan trial courts
in 2018, 9,285 petitions were filed seeking a full or limited
guardianship for an adult and 7,337 were granted, according to the state
Supreme Court, 1,766 of those requests were dismissed or withdrawn and
116 were denied. On Dec. 31, 2018, there were 32,137 adults with a full
or limited guardian.
Anthony said when Nessel launched the task
force, the legislation had already been introduced and the issue of
elder abuse impacts everyone. Anthony added she envisions the
legislation working in tandem with Nessel’s efforts.
“I think it’s
all good work, I think at the end of the day we will all come up with
some really good legislation. But these legislators came together and
listened to their constituents so we want to be responsive to those
constituents,” Anthony added. “This is not the first legislative session
that decided to tackle the legislation and we hope it’s going to be the
last.”
To report elder abuse, call 1-800-24-ABUSE or online on the elder abuse website.
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
Paul Juarez, 72, of Harvey, was found guilty of exploitation of a person with infirmities on Wednesday, May 1, 2019.
By Michelle Hunter, NOLA.com | The Times-Picayune
It took a Jefferson Parish
jury less than an hour to convict a man accused of taking advantage of
an elderly Terrytown woman with Alzheimer’s disease and helping himself
to more than $800,000 of her money, according to the Jefferson Parish
district attorney’s office.
Juarez faces a maximum sentence of 10 years in prison and a fine of up to $10,000.
Juarez
met the victim, a woman who died at 85 in 2014, at the West Bank church
they both attended, according to the district attorney’s office. The
woman was a retired nurse from North Carolina who was divorced and had
no children.
Juarez assumed power of
attorney for the woman in 2010 after she was deemed unable to make
decisions for herself, the district attorney’s office said.
Juarez
transferred more than $300,000 from the woman’s account into his own in
2010 and made himself and his wife the exclusive beneficiaries of her
insurance policy, according to prosecutors. He was also accused of using
some of the woman’s money to pay a tax bill in a Florida county where
his wife owned a business.
The woman’s
closest relative was a niece who lives in North Carolina. But Juarez
barred the niece from visiting the woman, according to prosecutors.
The woman’s niece, who was named in the will, reached out to an attorney in October 2014. Her attorney contacted the Jefferson Parish Sheriff’s Office, prompting an investigation.
Sheriff’s
Office detectives arrested Juarez at his Harvey home in January 2017,
booking him with exploitation of the infirmed and the illegal transfer
of monetary funds, court records said.
During the trial, Juarez’s attorney denied
exploiting the woman, explaining that he was merely carrying out her
wishes in accordance with an arrangement made between the two, the
district attorney’s office said. The woman wasn’t close to her niece and
did not want to go back to North Carolina.
Juarez’s sentencing date was not immediately available.
