In this file photo, a LED readout board shows the status of calls coming into the Statewide Intake Call Center in north Austin for the Texas Department of Family and Protective Services. RALPH BARRERA / AMERICAN-STATESMAN

The state agency charged with investigating abuse, neglect, and financial exploitation and providing services to older Texans and adults with mental, physical, or developmental disabilities, did not consistently follow its policies and procedures for in-home investigations, the Texas State Auditor reported on Wednesday.

“This increases the risk that allegations of abuse, neglect, or financial exploitation may not be adequately investigated and addressed,” according to the report.

Specialists at the Adult Protective Services division of the Department of Family and Protective Services specialists investigate reports of alleged abuse, neglect, or financial exploitation to determine whether the reported situation exists and to what extent it adversely affects the alleged victim.

The audit found that specialists and managers did not make regular contacts with clients to ensure their safety as required by its policies; follow procedures related to supervisory approval of cases; follow procedures when determining that clients were ineligible for services.

In a response to the audit, the department noted that turnover rates in the Adult Protective Services division is the highest of any division at the Department of Family and Protective Services.

“Turnover at this rate increases the likelihood that caseworkers will focus attention on immediate client safety at the time of intake rather than ongoing service and safety contacts during the life of the case,” the department wrote in its response. The response said the agency has already begun implementing a system to improve compliance with contacts.

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State auditor: Texas is failing to protect its most vulnerable adults

The jury deliberated for several hours before returning the not-guilty verdict.

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Tax evasion charges dropped against Mariaville woman cleared of bilking uncle

ST. PAUL—Minnesota no longer has a backlog of elder-abuse allegations that need to be investigated.

The Minnesota Department of Health announced Wednesday that state officials have finished investigating 826 cases of abuse of seniors and vulnerable adults. Investigators substantiated allegations in 30 percent of those cases.

The investigations were part of a backlog of 2,231 reports of abuse and neglect the state faced in January.

What remains unclear is the final outcome of the cases where investigators found merit in the allegations. A Department of Health spokesman said it takes time for cases to be resolved because they are often referred to other agencies, such as the state Board of Nursing.

Jan Malcolm, who was appointed to lead the Department of Health in the midst of the backlog, said teamwork between her agency's Office of Health Facility Complaints and the state Department of Human Services improved the state's response to complaints.

The state receives about 400 complaints each week and has received 12,849 since the beginning of 2018.

"Due to hard work and an aggressive quality improvement process, we are in a much better place to serve Minnesota's elders and families," Malcolm said in a statement announcing the clearing of the backlog. She added the department continues to work to improve its response to complaints and to address the underlying factors that lead to abuse.

Minnesota's backlog came to light in 2017 when state lawmakers learned many complaints of abuse of seniors and vulnerable adults were not being properly investigated. During the 2018 legislative session, family members gave emotional testimony of the maltreatment their loved ones faced at facilities that were supposed to be overseen by the state.

But state lawmakers were unable to agree on meaningful reforms to improve protections for seniors and vulnerable adults. Changes approved by the Republican-controlled Legislature fell victim to Gov. Mark Dayton's veto of the sprawling budget bill they were included in.

Advocates for vulnerable adults criticized the proposed changes that did make it through the House and Senate, calling them a step backward, in many cases, from current law.

Emily Piper, Human Services commissioner, called clearing the backlog a milestone, but added that new regulations are needed.

"Much work remains, including needed legislation that will put safeguards in place to make sure Minnesotans are treated with dignity as they grow older and can no longer care for themselves," Piper said.

The Department of Health has implemented a new electronic system for documenting complaints that should improve how quickly cases are addressed and make it easier for families to follow up on allegations. They've also updated how the Office of Health Facility of Complaints investigates allegations.

A March inquiry by the state legislative auditor, a government watchdog, found poor leadership in the Office of Health Facility Complaints exacerbated the state's inability to properly investigate past allegations of elder abuse.

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Minnesota's backlog of elder-abuse complaints has been cleared

INDEPENDENCE, Mo. -- Major penalties are now being slapped on an Independence nursing home and rehab facility.

FOX4 first told you about concerns at Redwood of Independence back in May. Since then, more patients and families have been filing complaints, and investigators have found even more problems.

“This place -- it`s harming people. It is, it’s harming people,” former Redwood patient Tony Lee said.

Lee said he's just now able to talk openly about his time as a patient at Redwood of Independence.

“When I got out of this place, I was in a dark place because I said to myself, ‘Why me? Why did you treat me like this? Why did you do this? I’ve done nothing to you. I was there to get well,’” Lee said.

He had total knee replacement surgery in December. He went to Redwood for his post-surgical rehabilitation and said almost right away, there were problems.

“I was scared to death. I didn’t know what was going on,” Lee said.

His doctors gave Redwood instructions for his care, including pain medications and being put on what's called a CPM machine, which helps restore range of motion. Lee said nurses at Redwood didn't even know how to work the device.

“They left me in it for 7-8 hours, and I was supposed to be on it for two hours at a time,” Lee said.

After a few hours, he started screaming in pain -- but no one came to help.

“And my neighbor across the hall is the one who got up and went and got help because of the emergency button wasn’t working,” Lee said.

Once he finally got back to his bed, he was also having stomach pains.

“I hadn`t been to the bathroom in six days. They brought me a bedpan because I told them if I have got to go to the bathroom, you don’t check on me, bring me a bedpan. And they brought me a copper or metal bed pan at 7 or 8 o`clock that night and put me on it,” Lee said.

He fell asleep, and the bedpan was still there the next morning. No one came to check on him until it was almost lunch time.

“Torture because they had to rip this bedpan off of me. My whole right buttocks was bloody red. It was just, and again, I`ve got the pictures showing not just a little mark. But the whole buttocks was ripped,” Lee said.

He demanded a visit from management and threatened to call police.

“It took them 36 hours afterward for somebody to come and address that my butt was ripped open. From that point I called my surgeon to let them know I was being mistreated. They did the necessary paperwork to get me out of there,” he said.

Lee thought he'd get transferred to another rehab center. But instead, he ended up in an ambulance, headed back to the hospital.

“I had to have an emergency blood transfusion because my hemoglobin was so low it was crazy. The nurses were surprised I could hold my head up,” Lee said.

And the damage didn't stop there. He found out the improper use of the CPM machine also damaged his new knee joint. He had to have the surgery re-done.

“It`s been hell,” Lee said.

Lee only learned about FOX4’s last report on Redwood after contacting federal, state and local investigators.

FOX4 has now learned Redwood of Independence just had its annual license renewal inspections -- and the findings are deeply disturbing.

One patient's catheter botched so badly they had to go to the hospital with "possible sepsis."

Multiple patients reported having medications delivered late or not at all. Two patients even missed critical doses of insulin, causing their blood sugar levels to go through the roof.

Federal inspectors noted Redwood "failed to ensure" these errors wouldn't happen. But the only penalty was an "in-service" class to reinforce the importance of on-time medicine delivery.

The inspections also show many patients sat in the dining hall, waiting to be fed for hours. Other patients didn't get a shower for two weeks when bathing is required a minimum of twice weekly.

But possibly most disturbing: A certified medication tech at Redwood was busted stealing dozens of pain pills and patches. That med tech even admitted to one patient she had a "history of cocaine abuse."

Patients told investigators they suspected that tech wasn't giving them the right medicines. One of them started spitting pills out and tucking them in a drawer.

Federal inspectors found that patient's medicine cup, labeled "bad drugs, meth copies." The pills in the cup weren't the prescription pain medications the patient was supposed to take. They were vitamins.

That medication tech was even hospitalized after coming to work impaired and later fired. A police report was taken, but no charges were filed. According to police, the victim of the theft, the facility itself, declined to cooperate and wouldn’t provide witness testimony.

The medication theft went on for weeks undetected, all while patients were put at risk.

“I’m saying to myself, ‘How can this continue? How can this be going on when the state and the feds know what this place is doing?’” Lee said.

The repeated patterns of mistakes and lack of basic patient care have been deemed so troublesome now the federal government is now taking action.

This summer, Redwood of Independence was notified it was "not in compliance." And as a result, it will no longer get reimbursed by Medicare and Medicaid for any new patients entering the facility.

It's a harsh penalty. But to Lee, it's not enough. He thinks Redwood should be shut down.

“It’s got to stop. Somebody has to stop these people. There are people being hurt physically and mentally,” he said.

Lee worried for the patients still at Redwood, many who suffer from severe conditions and can't speak for themselves to get help. He hopes the facility will take its penalty as a wake-up call to do the right thing moving forward.

“We have to treat people the right way. It`s not about a dollar sign. It`s about people being sent here for care: mentally and physically. And let`s take care of these people,” Lee said.

Sadly, Lee died recently. His family still wanted FOX4 to share his story, so others know what he endured and in hopes that Redwood will work hard to improve patient care.

FOX4 went to Redwood and demanded to speak with its director, looking for answers. The director declined to answer any of our questions and insisted their public relations representative contact FOX4.

Prior to our visit, we made multiple attempts to contact their spokesperson. To date, that individual has still not returned our calls or made an effort to reach FOX4 following our visit to Redwood.

Redwood of Independence has until November to make major improvements or it'll face additional penalties.

States and the federal government post quality ratings and inspection reports on nursing homes online. Find federal reports here; Missouri reports here; and Kansas reports here.

Experts recommend you review those ratings before choosing a facility for yourself or a loved one and to visit centers in person if possible.

Full Article & Source:
More complaints filed, more problems discovered at Independence nursing home

Theresa Lynn Duffey, 55 of Rome, was arrested this week after reports said she lied in order to avoid being arrested.

Reports said that Duffey gave false statements to police about concealing a person’s location who was reported missing.

She also is accused of taking $42 from 3 juveniles under false pretenses.

In addition, Duffey is accused of exploiting an elderly man when she portrayed herself as a “care taker” in order to obtain finances though false pretenses.  She also has been allegedly keeping the 79 year-old victim away from his home, depriving him of essential medical services.

Duffey is charged with exploitation of the elderly, theft by deception, and false statements and writings.

Full Article & Source:
Rome Woman Accused of Numerous Lies and Schemes in order to Steal Money

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Court records: West Virginia caretaker forced large dogs to attack patient

Jessica Rinaldi/Globe Staff Murray Cooper, 94, and his wife, Ila, still live in their West Roxbury home despite health issues.

“There’s a window, and once it closes, it closes forever.”

Len Fishman, director of the University of Massachusetts Boston’s Gerontology Institute, was talking about an urgent issue in a society that values “aging in place”: deciding the right time to leave your home and move into housing for seniors.

Make the move too soon, and you lose an important part of yourself. That’s one fear. But wait too long — until your physical or cognitive state has greatly deteriorated — and any place that’s not depressing won’t take you. That’s the other fear.

“It’s a real pressure point,” Fishman said.

Many older people are happier after moving to a place where life’s chores are eased, activities and social opportunities are on site, and a van goes right to the grocery store.

But with horror stories about elder abuse at facilities seared into the public’s mind, and prices that can run $10,000 a month or more, the specter of moving into an old persons’ home — even if it’s not called that — can cause stress between older parents and their adult children, between spouses when one is healthy and the other isn’t, and of course for the seniors themselves.

“What they call ‘assisted living’ is a misnomer,” said Murray Cooper, 94. He laughed joylessly. “If you need assistance, they don’t want you.”

Cooper has friends who have moved into assisted living, he said — apartments that are supposed to be nice. “But the kitchens are so dark and bare. Going into such a place would be devastating. They’re much too restrictive.”

Cooper is a World War II veteran, retired clothing designer, and, until recently, a skier. He has lymphoma, and his wife of 72 years, Ila, has memory issues. They live on the top half of a two-family in West Roxbury. There’s no elevator, but he installed handrails on the staircase.

“I’m still able to care for myself and [Ila],” he said, but “I wonder what the future holds for us when I am no longer able to help myself. Who would accept me?”

It’s sad to think older people would have to prove themselves to get into a facility or worry about a waiting list — as if they were trying to get into college — but that happens all the time, said Kate Granigan, CEO of LifeCare Advocates, a Newton-based firm that helps seniors and their families manage care.

“You can be turned down anywhere,” she said. “Independent and assisted living can turn you down. Even a skilled nursing home can turn you down. If you’re a male with MassHealth and behavioral issues, you can be told, ‘We don’t have a bed that fits your requirements.’ ”

“But it can also be ageism,” she said. “The residents will [privately] say, ‘I don’t want to see people who are frail or in wheelchairs or being fed by a caregiver.’ ”

That feeling is also expressed by those who are touring facilities, she said. “I can’t tell you the number of times I’ve had a 90-year-old say, ‘I’m not going there. It’s all old people.’ ”

There are several types of housing for seniors. In an independent-living community, seniors buy or rent a unit with a full kitchen and a parking spot. The screening process varies, but in general, residents need to primarily care for themselves. These are typically private-pay communities.

The next level is assisted living, which is for people with some physical or cognitive impairment. These are also primarily private pay. Some communities allow residents to stay even if their conditions worsen significantly, another reason for apprehensive seniors to make a move before “waiting too long.”

The third level is skilled nursing, or what’s called a nursing home, which is generally covered by private pay or Medicaid (once your funds are exhausted), although some high-end nursing homes are private pay only.

For those who want all three on one campus, there are continuing-care retirement communities.

With the stakes so high — and happiness on the line at a vulnerable stage of life — tension is rampant.


Kathy Vines, a professional organizer from Melrose, regularly gets calls from her 74-year-old mother in Florida, agonizing that if her father’s numerous health conditions worsen and he needs to shift from the walker he uses now to a wheelchair, no assisted-living facility will take them. “In her mind, that is the line she’s chasing, whether it’s real or not,” Vines said. “We’re dealing with her perception of what their options are going to be.”

Whether or not the “walk-in test” is real, it causes a lot of stress.

In the South End, Anne Lower feared that her mother, 85, would have a debilitating fall in the three-week period after her parents put down a deposit for an apartment on an active floor in a retirement community and before they were slated to move in.

“They wouldn’t necessarily have rejected her,” Lower said, “but they would have put her on a more monitored floor that provided skilled nursing care similar to a hospital.”

That might have worked for her mother, she said, but it would have sent her father — 88, vibrant, and still the “mayor” of his local Y — “into deep depression.”

An entire industry has grown up around the need to help seniors negotiate their needs as they age. And with 10,000 baby boomers turning 65 each day and the elderly living longer, the geriatric-care management industry is flourishing.

In 33 years, the Aging Life Care Association (formerly the National Association of Professional Geriatric Care Managers) has gone from 50 members to around 1,800, according to Samantha Colaianni, manager of marketing and membership for the trade association.

At prices that range from about $125 to $225 an hour in the Northeast, according to Anne Sansevero, an association board member, care managers can advocate for a longer stay on a patient’s behalf when a hospital discharge feels too soon. Because many have nursing or social work degrees, they can assess a senior’s overall health and cognitive state and evaluate home safety.

When a daughter flies in from out of town because her mom’s had her fifth ER visit, a care manager can help find rehab or home-care or housing options. “That local knowledge is important,” said Sansevero.

And when a parent in failing health doesn’t want to leave his home, and the adult children are reluctant to push, care managers can play bad cop.

“The families feel guilty, like they are trying to railroad the parent,” said Carmen Roy, founder of Elder at Home, in Pawtucket. “They don’t want to end the relationship on that note — never to be forgiven.”

But sometimes it’s not the older adult who is clinging to a lifestyle that no longer works.

In Dedham, Mitch Heller listed the activities his mother has been enjoying since she moved from NewBridge On the Charles’s assisted-living program to its long-term chronic care center — concerts, bridge, and movies among them — and said he wished he’d accepted her declining condition sooner.

“I wasn’t ready,” he said.

Full Article & Source:
‘There’s a window, and once it closes, it closes forever’

Elderly financial abuse has been around for millennia; the Old Testament chronicles it. In Genesis, Jacob deceives his blind father, Issac. While elderly financial abuse is far from new phenomena as our population ages, it is more far-ranging today. Due to embarrassment and shame, incidents rarely make the police files. Newer studies indicate financial shenanigans cost elders more than $30 billion annually.

Protect yourself. Give your advisors the name of a trusted contact who they can speak to should suspicious activity occur. Be aware the trusted contact could be the duplicitous party. Consider multiple contacts and set up a protocol where the advisor can flag suspicious transactions.

In-home caregivers are in a position to commit financial abuse. Caregivers can have more contact than family members. With access to ATMs, credit cards and checking accounts unscrupulous caregivers can drain accounts surreptitiously. Monitor an elder’s bank accounts. Frequent trips to ATMs is a tip-off. To prevent forgery, have all dividend, retirement and Social Security checks deposited electronically. Review grocery store receipts — cash withdrawals at checkout are a warning sign. Corrupt service providers can scam the elderly. Excessive fees for lawn maintenance, replacing HVAC units unnecessarily, or irrigation systems sold at a high premium are examples.

Everyone should have an updated power of attorney (POA). Properly used, a power of attorney (medical or durable) provides legal protection when an elder is incapacitated. However, powers of attorney can be used to benefit the holder of the power. Sometimes the holder can convert property to their name to circumvent a will. Having an incapacitated elder co-sign a loan is another type of exploitation.

Sometimes the elderly are isolated by caregivers. Examples include taking away cell phones, changing locks, failure to open the door and removing elders from their home. Isolation by caregivers is cover for a crime. If isolated, document the circumstances. They aren’t letting you in the home for a reason.

To help detect elder financial abuse follow these red flags from the National Adult Protective Services Association. If an elder’s financial documents or valuables disappear, take action immediately. In the words of Deep Throat, follow the money. Unexplained withdrawals or checks payable to cash are a dead giveaway something is rotten in the state of Denmark. Forfeiture of oversight where an amoral relative or new acquaintance “helps” with the finances is an indicator of dubious activity.

Ask questions if your parents always paid their bills on time, but now creditors start knocking at the door. It can get serious quickly, especially if there are foreclosure warnings or property liens. Other indicators include unpaid bills or utility disconnections.

Elder financial abuse is not simply a disaster monetarily, but can be a personal tragedy since the victims often trust the culprits.

Even though Buz Livingston is a fee-only certified financial planner this should not be considered personal advice. For specific recommendations visit online livingstonfinancial.net or at the office in Redfish Village, 2050 Scenic 30A, M-1 Unit 230.

Full Article & Source:
JUST PLAIN TALK: Watch out for elderly financial abuse

NEW FAIRFIELD — With balloons tied to his chair and a smile on his face, World War II veteran Lou Russo marked turning 100 on Saturday with a party in his home, surrounded by many of the friends who had helped him return there just a few years ago.

The combat veteran, who had turned 100 that Wednesday, greeted guests in a fitting “Lou: the man, the myth, the legend” shirt in his living room, sharing stories and secrets for reaching the milestone age.

“I feel like I’m just born,” Russo said when asked how it felt to turn 100.

If it weren’t for the framed photos of volunteers repairing the home and stories from friends, it’d be hard to tell that it had been a collapsed roof in this room that put Russo at the center of a year-long court battle back in 2013.

Back then, Russo had been placed against his will in a nursing home when he was injured in a fall and his house was found in disrepair.

The fight to get him back to the Hammond Road house, taken on by friends and fellow veterans, also brought together volunteers from nearly a dozen community organizations to repair the home.

Many who joined the party Saturday recalled how groups like Habitat for Humanity, The Stephen Siller Tunnel to Towers Foundation, Home Depot and others took on an extensive renovation so Russo could live comfortably in the house he had built himself.

“It was worth the effort,” said Bob Kubisek, explaining how his company Summit Stair and volunteers helped put in new stairs and railings. “It was great to see (everyone) coming together to help out the elderly. I think we should do it more often.”

Russo’s battle had also prompted legislation in Hartford last year, co-authored by state Sen. Michael McLachlan, to better protect the elderly from court-appointed conservators. Russo’s first conservator had sold the veteran’s belongings and rented out his house to another family while he was staying in the nursing home.

The 100-year-old’s conservator is now Joe Schirmer, a veteran and one of the friends who led the charge to bring him home.

One of the highlight’s of Saturday’s party was when McLachlan stopped by to present Russo with an official happy birthday citation from Hartford.

“Congratulations on 100 years and a happy birthday,” McLachlan read. “...And hope for continued success.”

“Continued age,” Russo joked before thanking the senator. “I’m going to frame this, that’s going right on the wall.”

As for the secret to reach 100? It’s all about food, Russo said.

“I learned about nutrition in 1942,” Russo said. “You eat well and you feel good all the time, that’s all it is.”

Full Article & Source:
New Fairfield veteran celebrates turning 100

State officials have halted admissions at one of the biggest nursing homes in Knoxville after it was discovered that a bedridden dementia patient fractured both her knees in a fall but did not see a doctor and was left in agony for nine days.

 The patient fractured her knees while falling out of bed in front of a nurse assistant, then complained of "intense pain," state records show. However, it took the nursing home five days to perform an x-ray, then another four days to have her be seen by a doctor.


Full Article & Source:
New patients barred at Knoxville nursing home after woman with broken knees left in agony for 9 days

Judge Martin J. Mengarelli

EDWARDSVILLE –– A Madison County juvenile court judge will serve on two section councils of the Illinois State Bar Association.

Third Judicial Circuit Associate Judge Martin J. Mengarelli joins the child law section council and the tort law section council for the 2018/2019 term.

Mengarelli already has experience with child law as Madison County’s juvenile court judge. As a member of this section, he has a responsibility to help inform lawyers who work in any area that involves children of any major changes. These areas include adoption, guardianship, family law, child protection regulations and juvenile justice.

As a member of the tort law section council, Mengarelli will assist in enhancing how tort law is practiced on a professional and ethical level.

Third Judicial Circuit Associate Judge Martin J. Mengarelli is a judge in Madison County

ISBA President James F. McCluskey detailed the importance of the section councils to the bar.
“Section councils and committees are the backbone of the ISBA,” McCluskey stated in a press release. “Leadership is vital to the success of these groups.”

ISBA has 28,000 members from around the state, and offices in Chicago and Springfield. The organization provides special services to lawyers and the general public.

Mengarelli graduated from Loyola University in Chicago in 1989. His law career began after receiving his J.D. from Northern Illinois Law School in 1993. He currently sits on the board of the Illinois Judges Association as well as the Illinois Judges Foundation. He once served as the president of the Tri-Cities Bar Association. He is still a member of the Madison County Bar Association. Mengarelli and his wife live in St. Jacob.

Full Article & Source:
Illinois State Bar Association chooses Madison County judge for two advocacy councils

Full Article & Source:
Why are nursing homes drugging dementia patients without their consent?

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In the face of increasing awareness of elder financial abuse, the Insured Retirement Institute is intensifying its efforts to fight this pervasive and pernicious activity.

IRI, a coalition of consumer organizations representing the retirement industry, is advocating for increased support from the federal government for state adult protective service agencies that need resources to investigate complaints of financial exploitation of the elderly population.

The organization also will provide training materials for financial advisors about how and when to report suspected abuse, will launch an awareness campaign for advisors and will create an online resource center.

According to an IRI survey of 150 financial advisors, more than half of them said they suspected cases of exploitation of older investors that was going on regularly—ranging from a few times a year to weekly. Sixty percent of advisors say the most frequent type of abuse is misuse of funds by trusted family members or friends.

Nearly all the financial advisors in the survey knew they could not be held liable for reporting suspected exploitation under the newly signed Senior Safe Act. “However, many may not be aware that the law requires them to complete training approved by regulators in order to be shielded from liability,” IRI said.

Many firms already provide training but they need to review it to determine whether its content meets the requirements, IRI advised.

“Older investors are particularly vulnerable to exploitation due to declining cognitive abilities and the effect that has on their ability to discern between legitimate and fraudulent investments,” says Cathy Weatherford, president and CEO of IRI. 

Full Article & Source:
IRI Urges Advisors To Fight Elder Financial Abuse

Full Article & Source:
Granite Falls Woman Indicted On Fraud, Exploitation Charges

Alyssa Gilderhus before her ruptured aneurysm and two-month hospitilization at the Mayo Clinic.

In a jaw-dropping moment caught on video, an 18-year-old high school senior rushes to escape from the hospital that saved her life and then, she says, held her captive.

At the entrance to the world-renowned Mayo Clinic, the young woman's stepfather helps her out of a wheelchair and into the family car.

Staff. members come running toward him, yelling "No! No!" One of them grabs the young woman's arm.

"Get your hands off my daughter!" her stepfather yells.

The car speeds away, the stepfather and the patient inside, her mother at the wheel.

Mayo security calls 911.

"We have had a patient abduction," the security officer tells police, according to a transcript of the call.

'A cautionary tale'

The patient's name is Alyssa Gilderhus.

She and her family say she wasn't abducted from the Mayo Clinic in February 2017; rather, she escaped. They say the hospital was keeping her there against her will -- that Mayo "medically kidnapped" her.

Unhappy with the care she was receiving at Mayo, they say, they repeatedly asked for her to be transferred to another hospital. They say Mayo refused.

According to police, Mayo officials had a different plan for Alyssa: They had asked the county for assistance in "gaining guardianship of Alyssa," who was an adult.

A spokeswoman for the Mayo Clinic said hospital officials would be willing to answer CNN's questions if Alyssa signed a privacy release form giving them permission to discuss her case publicly with CNN. The spokeswoman, Ginger Plumbo, supplied that form to CNN.

Alyssa signed the form, but Plumbo declined to answer CNN's questions on the record. Instead, she provided a statement, which said in part, "We will not address these questionable allegations or publicly share the facts of this complex situation, because we do not believe it's in the best interest of the patient and the family. ... Our internal review determined that the care team's actions were true to Mayo Clinic's primary value that the patient's needs come first. We acted in a manner that honored that value for this patient and that also took into account the safety and well-being of the team caring for the patient."

This story is based on interviews with Alyssa and members of her family, a family friend, law enforcement officials and a former member of a Mayo Clinic board, as well as documents including law enforcement records and Alyssa's medical records.

By everyone's account, this is an unfortunate and devastating story about a bitter clash that went out of control -- a clash between a Minnesota farm family and one of the world's most revered hospitals.

"It's confusing to me why this went off the rails so horribly," said Richard Saver, a professor at the University of North Carolina School of Law, who at CNN's request reviewed medical and legal documents that the family and law enforcement officials provided to CNN.

Art Caplan, head of the Division of Medical Ethics at the New York University School of Medicine, also reviewed the documents, and he agrees.

"This should never have happened," he said. "This is a cautionary tale."

A Christmas Day aneurysm

The relationship between Alyssa's family and the Mayo Clinic started off well.

On Christmas morning 2016, Alyssa settled in with a mug of hot chocolate to open her gifts. She was surrounded by her large family: her mother, Amber Engebretson, a stay-at-home mom; Duane Engebretson, her stepfather since she was 4 years old, who manages a construction company and the family's farms; and her five younger siblings, then 18 months to 11 years old.

They live in Sherburn, Minnesota, population just over 1,000 people, about 150 miles southwest of Minneapolis, on a farm with sheep, cows, horses and pigs.

Alyssa was thrilled with her first Christmas present: a pair of cowboy boots emblazoned with the emblem of the Future Farmers of America, her favorite club.

Then she went to the bathroom. Her parents heard screaming.

"Mom, I need you!" Alyssa yelled as she lay curled up on the floor, vomiting.

It was immediately obvious this was much more than just a stomach bug. Her left side was very weak, and she couldn't hear out of her left ear.

"You could see looking at her that she was petrified," her stepfather said.

He called an ambulance. A local hospital determined that Alyssa, who'd always been healthy, had a ruptured brain aneurysm: A blood vessel inside her brain had suddenly and unexpectedly burst.

Surgeons explained that her life was on the line. They drilled a hole in her skull to relieve the pressure on her brain.

A nurse gave her parents a bag of Alyssa's hair, which had been shaved off for the operation. Some people liked to have it, she said.

Amber and Duane cried as they considered that this bag of hair -- their daughter's long, beautiful hair -- might be all they had left if she died.

They begged to have her sent to the Mayo Clinic. The main campus for the world-renowned medical center was 85 miles away in Rochester, Minnesota.

"They're the best. People come from all over the world to go to Mayo," said Alyssa's mother, Amber Engebretson, who worked as a vehicle inspector for the Minnesota State Patrol before staying home to care for her family.

But Alyssa couldn't get to Mayo immediately. There was an ice storm. Ambulances couldn't drive, and helicopters couldn't fly.

The weather eventually broke, and about 7 p.m. -- about nine hours after the aneurysm -- Alyssa finally arrived by ambulance at Mayo headquarters in Rochester.

On Christmas night, surgeons gave her a 2% chance of living, her parents said. Doctors wrote in her medical record that her prognosis was "grim."

Her parents reached out on Facebook for prayers. They called their daughter the #Christmasmiraclegirl.

Alyssa lived up to that name. She survived, thanks to four brain surgeries over the next month. Her doctors were ecstatic.

"They were like, she's not supposed to be here. She beat the odds," her stepfather said.

"Mayo neurosurgeons saved her life," added her mother. "We'll be grateful to them forever."

On January 30, Alyssa was transferred from the neurology unit to the rehabilitation unit.

It should have been a happy turning point. But that's when the troubles began.

Tensions flare

Although all had gone smoothly on the neurology floor, the family got into conflicts with the rehab staff almost immediately.

First, doctors there wanted to take Alyssa off oxycodone, a powerful opioid painkiller that the neurology doctors had prescribed for pain after surgery. Her most recent surgery -- the fourth in one month -- had been just a few days before.

"She'd lay in bed with tears coming out of her eyes because she was in so much pain," her stepfather said.

Many medical authorities, including the Mayo Clinic's website, say opioids are critical for post-surgical pain management.

A week after Alyssa arrived on the rehabilitation floor, her mother shared her feelings on Facebook.

"[Alyssa's] and my frustration level was high and it seems that they just don't listen sometimes," Amber wrote on February 7.

More disputes arose. Her parents say their daughter's breathing tube was the wrong size, and they had to pester doctors to get it corrected. They also say the family -- not doctors -- discovered that she had a bladder infection. They say a social worker discussed private financial information within earshot of visiting friends and relatives.

Her parents asked for the social worker and a doctor to be replaced.

"We just need someone who will at least listen to us and hear us," Amber wrote on her Facebook page on February 20.

Alyssa's parents say that at their request, they had a meeting with her care team on February 21.

"I had two whiteboards filled up with questions left unanswered, tests left undone, and every other question we could think of," Amber wrote on her Facebook page that day.

Amber says that at one point during that meeting, she told the staff she felt like they "don't give a f***," later apologizing for her language. She also asked for a second doctor to stop taking care of their daughter.

"We took no crap and laid it all on the line. ... Because seriously what do we have to lose at this point," Amber wrote on Facebook that night.

Mayo kicks Mom out

On February 22, the day after that meeting, Amber got into a disagreement with a nursing aide and asked to have her removed from her daughter's care team. She was the fourth staffer the family had asked to be replaced in just three weeks.

That afternoon, Amber says, she was scheduled to have a meeting with the social worker -- the same one she'd asked to leave her daughter's care.

Amber had requested the meeting, and she says that as she approached the office at the appointed time, a man she'd never seen was standing in the office doorway. She said he saw her coming and went into the office and shut the door.

Amber listened through the door. She says that as she suspected, the man and the social worker were talking about her family.

"I proceeded to open the door and say, 'Since you're talking about my family, I think it's only appropriate that I would be here also, to be included in the conversation,' " she remembers.

She says the man puffed out his chest and stepped toward her, and she took a backward step into the hall. The man, who Amber later learned was a physician, demanded that she leave.

She says the man told her, "I run this whole rehab unit. Do you understand me?"

Amber describes the doctor as "intensely aggressive."

She replied to him, she says, with similar aggression and frustration: "I need to talk to you. Do you understand me?"

The doctor walked away.

CNN reached out to this doctor and other staff members involved in Alyssa's care but did not receive responses.

About an hour later, Alyssa's parents say, the same doctor, the social worker and a nurse approached the family. They were accompanied by three security guards.

"[The doctor] said to me, 'You are not allowed to participate in Alyssa's care. You are not allowed on Mayo property. You will be escorted off the premises right now,' " Amber remembers.

Amber and Duane say they asked why Amber was being kicked out but did not receive an answer.

Later, a social worker would tell police that "Amber interrupted a meeting because Amber was upset over the care Alyssa was receiving. Due to that incident, Amber was escorted off of [Mayo] property."

According to Alyssa's parents, the doctor told Duane that he could stay but that he would not be allowed to have any involvement in his stepdaughter's care.

The couple say they asked the doctor whether they could speak with a patient advocate.

"He said, 'There is no patient advocate,' and walked away," Amber said.

When asked about Amber's dismissal from the hospital, Mayo spokeswoman Plumbo sent CNN a statement.

"Our care teams act in the best interests of our patients. As a general practice, this includes sharing information with family members and facilitating family visits and interactions with patients and their care providers when the patient is in our care. However, in situations where care may be compromised or the safety and security of our staff are potentially at risk, the family members' ability to be present in the hospital may be restricted."

Plumbo did not elaborate on whether or how Amber compromised her daughter's care or placed staff at risk.

"We would never compromise her care," Amber said. "She's our daughter. We love her."

She also says she never put staff members at risk. "We would never do that -- ever," she said.

On February 23, the day after Amber was kicked out, she went on Facebook.

"PRAYER WARRIORS UNITE!!!! We need your help. ... Please READ THIS AND SHARE THIS POST in hopes it reaches the people or person who can help us," she wrote.

"I HAVE BEEN TOLD I AM NOT ALLOWED IN ALYSSA'S ROOM AND NO ONE IS ALLOWED TO HAVE ANY SAY OR PARTICIPATE IN HER [CARE]. ... I AM NOT ALLOWED TO SEE HER!! We have been given no reason why, no paperwork, and no explanations," she continued. "I never imagined something like this could happen in our world and a very hard situation already has been made even harder!!"

The response from one Facebook user led the family to conclude that they needed to get Alyssa out of Mayo, and fast.

'Basically a prisoner at Mayo'

Alyssa, who was legally an adult during her entire hospitalization, says that around this time, she started asking doctors and nurses to transfer her to another facility.

She says she never received a response.

"They were cruel to me," Alyssa said, adding that she wanted to get out of Mayo "as bad as possible."
On February 23, three weeks into her daughter's stay in rehab, Amber complained on Facebook, tagging Mayo.

"They refuse to let her go. ... We cannot transfer [Alyssa] out or get her discharged," she wrote. "No one has any say in [Alyssa's care] and she is basically a prisoner of Mayo."

Alyssa's stepfather and grandmother say they also asked to have her transferred out of Mayo.

"I asked two to three times a day, and it would go nowhere," Duane said.

"Duane said, 'This is ridiculous. We don't want her here; Alyssa doesn't want to be here; she doesn't feel safe here,' " her grandmother Aimee Olson remembers. "But there was no response."

Duane says he tried to talk to a senior doctor on the rehab staff about a transfer. It was the same doctor who had asked his wife to leave the hospital.

"He said 'I have nothing to say to you. This is a legal problem,' " Duane remembers. "I even asked him, 'can I speak to your supervisor, your boss,' and his exact words were 'I run this whole floor,' and [he] turned around and walked out of the room, and that was it.'

Duane says he called the Mayo Patient Experience office and in a 45-minute phone call described the family's grievances. He said the patient experience specialist told him he would be back in touch after getting Mayo's side of the story.

Olson, Alyssa's grandmother and Amber's mother, said she also tried to speak with the senior doctor but was told he wasn't available.

"She was truly being held captive," Olson said. "I would never believe a hospital could do that -- never in my wildest dreams."

The family and a friend say they were instructed by Mayo staff not to talk to Alyssa about her mother.

Two nurses were assigned to be with Alyssa, and they kept careful watch, according to visitors.

"It was like they were watching every move you made," said Joy Schmitt, Alyssa's boyfriend's mother, who visited frequently after Amber was asked to leave the hospital.

'They were taking over our daughter'

On February 21, the day before her mother was kicked out of the hospital, a Mayo psychiatrist examined Alyssa and found that she lacked the capacity to make her own medical decisions, according to a summary of her care that her doctors wrote after she left Mayo.

Around this time, a hospital social worker went to adult protection services in two counties to try to get those authorities to get guardianship over Alyssa, according to the police. If they had succeeded, she would have become a ward of the state.

Alyssa and her family say that they weren't told any of this as it was happening but that around this time, they started to feel that Mayo was isolating Alyssa.

On February 26, staffers confiscated Alyssa's cell phone, laptop and tablet after finding that she'd made a video for her mother, according to Alyssa and her family. They say Alyssa's visitors were also banned from bringing their devices into the hospital.

The same day, Mayo staffers said no one would be allowed to stay overnight with Alyssa, according to Duane and Amber's sister, April Chance, who attended a meeting with Alyssa's care team.

Duane says he asked the staff to reconsider. He said his stepdaughter had never spent the night alone in the hospital. But he says they refused.

"The doctors said they were doing this for Alyssa's own benefit," Duane said.

The family says the doctors also told them that visitors would no longer be allowed to attend Alyssa's treatment sessions, such as physical and occupational therapy.

"I said, 'We're her cheerleaders. We cheer her on,' " her aunt remembers. "And they said 'No, you're impeding her care.' "

She said the staff didn't elaborate on how they were impeding her care.

"They were restricting us little by little from even being with Alyssa. They were taking over our daughter," Duane said.

Mayo also pushed back Alyssa's discharge date, which was supposed to be February 27.

Meanwhile, her mother's following was growing on Facebook, with many users posting angry messages that tagged Mayo.

One woman sent Amber links to stories about a teenager named Justina Pelletier.

Articles in The Boston Globe and elsewhere described how in 2013, Pelletier, then 14 years old, was placed in state custody for nearly 16 months after Boston Children's Hospital accused her parents of interfering in her care. She spent much of that time in a psychiatric ward.

Amber says she spoke on the phone with Justina's parents, Linda and Lou Pelletier. She says they warned her there would be signs that the hospital was seeking guardianship for their daughter. They would keep a tight watch over her and limit her communications with her family.

Through their lawyer, John T. Martin, the Pelletiers confirmed that they had conversations with Amber.

A spokeswoman for Boston Children's Hospital told CNN that the hospital is "committed to the best interest of our patients' health and well-being" and declined to discuss the specifics of the case.

Amber sent a text to the woman who'd sent her the news articles.

"OMG I am SICK. This is what is happening," Amber wrote. "It rings lots and lots of bells. ... Omg ... I am so scared."

A Mayo board member steps in

Alyssa's parents reached out to a friend of a friend for help: Mark Gaalswyk, who at the time was a member of the board of directors for the Mayo Clinic Health System in Fairmont, Minnesota.

Gaalswyk emailed a Mayo Clinic vice president. He informed her of the situation and explained that CNN had contacted the family.

"Could you please please do what you can to get your arms around the [situation] immediately?!" he wrote. "Please get to the bottom of this quickly before it blows up even more."

But Gaalswyk's pull wasn't enough.

He says Mayo treated Alyssa "terribly."

"I'm probably the most pro-Mayo person who has walked the face of this earth," said Gaalswyk, who left the board January 1. "But this was a mess."

He said he thinks Amber probably "used words she shouldn't have" with hospital staff.

"I'm not saying that Amber is 100 percent in the right," he added, "but I know what Mayo did is not OK at all."

In its statement to CNN, the Mayo spokeswoman said that "Mayo Clinic is committed to the safety and wellbeing of all the patients we treat."

Feeling like they were running out of options, Alyssa's parents then enlisted the help of Karie Rego, an attorney and patient advocate they'd met on Facebook.

On February 27, Rego spoke on the phone with Joshua Murphy, Mayo's chief legal officer, and faxed him a letter urging Mayo to transfer Alyssa to another facility.

"Given what has happened here, an expedited transfer this coming week would be best for everyone," she wrote.

Rego says an attorney in Murphy's office called her later. She says that he told her he couldn't speak with her and that she never heard anything more from Mayo's legal department.

That night, Alyssa's parents thought about Justina Pelletier and the 16 months she spent in state custody.

They went online and printed a form for Alyssa to sign, saying she was leaving the hospital against medical advice.

But her parents didn't know how they would get her out. Two nurses were assigned to keep watch over her at all times.

They started to hatch a plan to get her out of Mayo the very next day.


Full Article & Source:
Escape from the Mayo Clinic: Teen accuses world-famous hospital of 'medical kidnapping'

Margaret Danko, right, and her daughter Janis Danko giggle in their Denton home as they talk about Janis’ singing abilities.

A local resident with Down syndrome and a degenerative nerve disease may finally get the added care she needs, but it comes at a cost to her mother.

A Denton County probate court granted temporary guardianship of 44-year-old Janis Danko to Courtney Carey, the manager of Denton County MHMR’s Guardianship Program. Janis has several health problems including tardive dyskinesia, a nerve condition that diminishes control of the limbs.

She had lived with her 80-year-old mother, Margaret Danko, in their east Denton home, but now will reside in a local group home for people with disabilities. Carey said during her testimony that Danko will still be involved in Janis’ life, just not as the woman’s primary caregiver.

“We’ll take care of her, but we have to do it together,” Carey told Danko after the hearing.

In a July Denton Record-Chronicle story, Danko outlined her fight to get Janis into the Denton State Supported Living Center. The woman said Denton County MHMR hadn’t responded to multiple inquiries for help since February.

“MHMR has done nothing but argue and threaten,” Danko said in court on Thursday.

The agency, citing privacy laws, declined to comment for the July story. However, an employee refuted Danko’s claims in court.

MHMR employee Morgan Quinnelly said she and other employees met with Danko and Janis four times and had been involved with the family for the past seven months. On certain occasions, Danko got frustrated with the employees and told them to leave her house, Quinnelly said.

Virginia Hammerle, an attorney who was appointed by the court to represent Janis, noted that Danko has moved several times when she couldn’t get the services she wanted for Janis. Hammerle said Janis told her that she wanted to live in a group home with people her own age.

“Although I don’t believe Ms. Danko is intentionally acting against Janis’ best interests, I do believe the effect of her actions are not in Janis’ best interest,” Hammerle said.

Danko defended her decision to move and said her frustration stemmed from the convoluted process to get Janis into the State Supported Living Center.

“Yes, I’ve been a lot of places and you know what it was for? Janis,” she said.

MHMR officials said admission to the state living center requires approval from a probate judge and often is used as a last resort for people who can’t function in other settings. Byron Brown, the court investigator for the Danko’s guardianship case, said he believed Janis would do well in a less restrictive residential home.

Danko said she resisted giving any decision-making power over to MHMR, but Judge Bonnie Robison assured her that the agency would be under the court’s supervision.

“Everyone in this [court] room wants to help you and help Janis,” Robison said.

The court decision granted guardianship to the MHMR program for 60 days. A hearing has been set for September to appoint a permanent guardian. Danko’s neighbors said the woman has done well caring for her daughter, but realizes she has physical limitations because of her age.

“Whatever needs to take place should be a permanent solution, not a Band-Aid,” neighbor Caleb Lopez said. “I would start today, yesterday, six months ago when MHMR was first contacted.”

Full Article & Source:
Denton woman to receive health services after guardianship hearing