Evaluation of Traumatic Brain Injuries Gets Its First Overhaul in 50 Years

by April Dembosky

A UCSF doctor helped lead the first major update in over 50 years to how traumatic brain injuries are assessed — going beyond the Glasgow Coma Scale to include CT and MRI scans, biomarkers and other health factors. (Lu ShaoJi/Getty Images)

For the first time in over 50 years, emergency room doctors will have a new framework to assess people with head injuries from car or bike crashes, falls and assaults.

Existing assessment protocols for traumatic brain injury rely on broad, vague measures that filter patients into three categories based on their symptoms: mild, moderate and severe. Doctors hope the new classification system, published Tuesday in The Lancet Neurology, will bring more detail to diagnosis and more nuance to treatment.

“Patients labeled as ‘mild’ TBI were told they could go back to work in a couple days. Six weeks later, they’ve got pounding headaches, problems with their visual system, they’re not sleeping well. There’s nothing mild about that,” said Dr. Geoff Manley, professor of neurosurgery at UCSF and lead author of the new framework.

“On the other hand, there are patients that were diagnosed with ‘severe’ TBI leading full lives, whose families had to consider removing life-sustaining treatment,” he added.

Most people have a 50% chance of experiencing a traumatic brain injury in their lifetime, Manley said. About 40% of those diagnosed with mild injury, or concussion, never see a doctor, and about half diagnosed with severe injury are withdrawn from ventilators and allowed to die — a decision made, on average, after three days.

The same day Scott Hamilton crashed his Vespa on Market Street in San Francisco and slid 60 feet into the curb, doctors at San Francisco General Hospital recommended disconnecting his life support machines.

“They told my wife: ‘He’s got a 1 in 10 chance of ever coming out of his coma, and if he does, he’s got a 1 in 20 chance of your thinking that was a good idea. He’s unlikely to live the night and I think you will consider that a blessing,’” Hamilton said.

A new classification system, developed by a coalition of 94 experts and patients across 14 countries, aims to improve brain injury assessment through a four-part framework: clinical evaluations, advanced imaging, blood tests and consideration of key demographic factors. (Tom Werner/Getty Images)

But Manley saw it differently and insisted his bosses give Hamilton more time. He made a full recovery. Twenty years later he’s married, working full time, and raising two teenage daughters.

“I lose a lot of sleep at night wondering if I’m doing the right thing,” Manley said. “We certainly don’t want to create someone with profound disability long-term, but we have to give people time to recover.”

The new classification system, developed by a coalition of 94 experts and patients across 14 countries, is intended to make those decisions easier by making assessments more objective, detailed and precise.

The new framework is made up of four pillars: an expanded clinical evaluation; new blood tests; CT and MRI scans; and a review of demographic factors known to affect recovery times, like age, sex, family support, and a history of previous head injuries or mental health conditions.

Clinical assessments under the new system require doctors to be more exacting when scoring eye, verbal and motor function and to use new tools to measure pupil function.

New biomarker blood tests, developed by the military, help identify tissue damage and determine which patients need imaging and which can be spared the cost and radiation exposure of an unnecessary scan.

Where indicated, CT and MRI scans can reveal bleeding, blood clots or fractures that require surgery. Or they could show that a patient is doing better than their clinical presentation alone would indicate, as was the case for Hamilton.

The final pillar requires taking an extensive medical and social history of the patient to look for factors likely to affect recovery time. People who are older, women and those with a history of concussions, headaches or mental health problems usually take longer to recover.

“If you don’t ask about these elements, you may miss an opportunity to offer a more realistic prognosis to the patient,” said Dr. Cathra Halabi, director of UCSF’s Neurorecovery Clinic, which includes a program focused on people in the first six months after a traumatic brain injury.

While the new TBI assessment framework is geared primarily toward physicians treating people in acute settings within the first 24 hours of an injury, Halabi said it extends naturally to clinicians like her who see people longer term in an outpatient setting.

More detailed assessments will help doctors better determine who needs urgent care and who doesn’t, who needs follow-up care and who doesn’t. They also have the potential to improve clinical trials, bringing more precision to patient selection and a better likelihood of discovering new effective treatments.

Under the current system, Halabi frequently receives patient charts from the ER that say, “Bicycle accident, mild TBI.”

She expects the new classification will yield a thorough diagnostic description along the lines of: “Thirty-year-old woman, helmeted bicycle accident, blunt head injury, brief loss of consciousness, peritraumatic amnesia. CT scan negative for bleeding. Experiencing double vision, emotional dysregulation. History of migraines and depression.”

The additional data will inform Halabi on how to properly care for this patient from the moment she comes into her clinic, and to be on the lookout for lingering and emerging symptoms like sleep impairments or endocrine dysfunction that could complicate healing.

“I’ve seen all sorts of bicycle accidents with mild TBI, and every single person is different,” she said. “Unless you really ask and probe a bit more deeply on the other side of the acute phase, you may miss an opportunity to find an element of the case that’s going to help make that person recover.” 

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Evaluation of Traumatic Brain Injuries Gets Its First Overhaul in 50 Years

Woman raising grandson injured in horrific crash surprised with heartfelt gifts from a Secret Santa

A local Secret Santa is giving $1 million to deserving people in eastern Idaho this holiday season and the East Idaho News elves are helping out. 

Every day, from now until the end of the year, we’ll be posting a Secret Santa surprise and today we are visiting a deserving grandmother named Debi. 

Debi has guardianship of her four grandchildren. Her grandson, Christian, was in a terrible car crash a few years ago. The driver died and Christian was left with a life-altering traumatic brain injury.  

He was flown to St. Luke's in Boise where he clung to life for six weeks. Debi never left his side. By the grace of God, he survived and spent the following 13 months at Primary Children's Hospital in Salt Lake City. Debi stayed with him the entire time while still managing to make sure Christian's three siblings were with trusted friends and adults.  

Because Christian's care is so intense, he was placed in a facility, but it has been Debi's dream to bring him home to be with the family. She worked hard for years to put herself in the position to have him return home and just last month, she finally did it. She moved into a new house and brought him home.

Christian is resilient - going from being an average 10-year-old boy to having the mental capacity of a toddler. He is walking again, but his care is 24/7 and extremely labor intensive.  

Debi takes care of Christian and his three siblings full-time. She has sacrificed everything to care for them, and she did everything in her power to keep her family together with the odds stacked against her. She is a remarkable person who has been through more than you can imagine.  

Secret Santa asked the East Idaho News elves to go surprise Debi with an early Christmas gift. 

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Woman raising grandson injured in horrific crash surprised with heartfelt gifts from a Secret Santa

Silicon Valley family exposes need to reform conservatorship law

by Moryt Milo

According to data on Santa Clara County homelessness, a staggering 42% of individuals on the street reported suffering from psychiatric or emotional conditions in 2019. Photo by Moryt Milo.

When Andy was 20 years old he had his head bashed into the cement during an unprovoked attack. Severely beaten, his mother thought he was gone, but Andy survived. A month later, he started hearing unexplained voices.

Andy’s symptoms worsened during the next few months, and his mother, Kathryn, took him to San Jose Medical Center which admitted him into psychiatric care. Over the next year as he lost touch with reality, he was diagnosed with schizophrenia, a severe mental illness that not only affects a person’s ability to think clearly, but also causes psychosis. Yet throughout his treatment plan, no doctor ever considered his traumatic brain injury as the cause for his sudden change in behavior.

“The excuse they used was it would disrupt the insurance billing if they changed the diagnosis,” Kathryn told San José Spotlight. The family has asked that only their first names be used to protect their privacy.

For the next 28 years, Kathryn became entangled in California’s broken mental health care system, stripping her of any power to advocate on her son’s behalf, while the laws enabled Andy to have complete authority over his care. The result left Andy psychotic and unable to care for himself.

Kathryn became the unwanted beneficiary of the state’s 50-year revamp to its mental health system, which put patient rights ahead of medical care. With limited options, she fought unsuccessfully to get Andy hospitalized while petitioning for a Lanterman Petris Short (LPS) Conservatorship, she said.

State Sen. Susan Eggman is looking to amend the LPS language under Senate Bill 43 to improve the odds for families like Kathryn’s, while incorporating guardrails to help defuse the opposition. The behavioral health bill passed through the Assembly Judiciary Committee on July 11 with bipartisan support. Advocates are hopeful it will make its way to Gov. Gavin Newsom’s desk.

The modernization of LPS

LPS, enacted in 1967, is for adults deemed to have serious mental illnesses such as schizophrenia and other psychotic disorders. The petition for this involuntary commitment can only be requested by the psychiatrist treating the individual. It’s then submitted to Santa Clara County Superior Court Probate Division and, if approved, the individual becomes a ward of the county’s public guardian for an undetermined period of time.

The bar for approval is high due to the subjective definition of “gravely disabled”—a mental health disorder where the individual is unable to provide for their basic personal needs such as food, clothing or shelter.

Under SB 43, the newly proposed language would add the inability to manage medical care and personal safety, and include individuals with substance use to the current definition of gravely disabled criteria.

The guardrails would require other alternative treatments including Assisted Outpatient Treatment (AOT) and CARE Court to be considered before a conservatorship is recommended.

“All along the principle has been: what is the less intrusive level of care an individual needs to be safe and supportive,” Randall Hagar, a mental health advocate who’s worked with Eggman for more than 10 years on legislation, told San José Spotlight. “The question is where does the person belong, it’s a clinical determination. Could they survive safely in the community with AOT or CARE Court.”

The revolving door

As Andy’s mental health deteriorated at San Jose Medical Center, doctors advised Kathryn to move her son into the county system at Santa Clara Valley Medical Center (VMC) to capitalize on wraparound services that included long-term treatment and housing. But moving from private pay to MediCal didn’t pan out as hoped.

“From that point he was constantly struggling. He never was stable. He was moved around from hospital to hospital,” Kathryn said.  “He would stay with me in between hospitalization, but then be moved into a board and care facility where no one managed his care.”

Andy’s life became a revolving door of hospitalization failures. He’d be hospitalized for three months to help him stabilize, discharged and then shuffled off to another board and care facility that provided limited support. The cycle was never-ending and Andy never got better.

Kathryn said the last seven years, from 2015 through 2022, were exceptionally bad when he was connected with a county provider—which she doesn’t want to name for fear of retaliation—that moved him into five different substandard board and care homes. One time he was given a mattress in a garage surrounded by chemicals and unsafe items. Another time he was crammed into a garage that housed 12 mattresses, his mother said.

Andy was shuffled from one board and care to another. At this location he was given a mattress in a garage next to chemicals and unsafe items. Photo courtesy of Kathryn.

Every time he became symptomatic, the provider called him out for bad behavior as an excuse to move him.  It wasn’t his fault, Kathryn said. They did nothing to help stabilize his psychosis and paranoia. The stress become so severe Andy would punch himself in the face, causing large cysts that became infected. When the paramedics came to move him for the fifth time, they took one look and transported him to San Jose Regional Medical Center.

“I begged them to keep him there until there was an opening at VMC, but they just let him go,” she said. “He was so sick. Off his meds. It was just awful. He walked away and became homeless.”

Kathryn had lost her son to the streets after trying everything to get him conserved. She went to the Santa Clara County Board of Supervisors. The county mental health board. She pleaded with hospitals, told them she had filed for AOT,  but every avenue turned into a dead end because families have limited rights once their child is no longer a minor and patient privacy laws kick in.

Dozens of groups oppose SB 43

Law Foundation of Silicon Valley attorney Melanie Roland said voluntary treatment should always be the goal. Her organization along with dozens of groups are vehemently opposed to SB 43.

By including new language pertaining to individuals with substance use, SB 43 expands the definition by an “incredible amount,”Roland told San José Spotlight.

Involuntary treatment is not a solution, she said, adding California is a coercive system that causes more people to be picked up by law enforcement and placed on involuntary holds that can lead to long-term hospitalizations. This results in a lack of available beds for others who need them, Roland said.

“The system we have created is one of mental health duress,” she said.

Roland said Sen. Eggman has a false impression about how SB 43 will better help those needing the most acute level of care.

“The expanded criteria will allow more people to be taken in on holds and that’s it,” Roland said. “It doesn’t mean anyone will be given more medical treatment. Absent a court order, no one will have to do anything.”

In Santa Clara County, 313 people were temporarily conserved and 566 were permanently conserved between 2020-21, according to the California Involuntary Detention Data Report. The number of individuals placed on a 72-hour hold in the county was 128 and 117 were put on 14-day holds. Statewide, more than 2,000 people were put on temporary conservatorships and 8,368 people were placed on permanent conservatorships, not including those in jails. The number for statewide 72-hour holds was roughly 120,000 people and about 48,000 for 14 days.

Santa Clara County Superior Court Judge Stephen Manley said the expansion of the gravely disabled definition could lead to more petitions filed if SB 43 becomes law. Manley has been an outspoken critic of the dire need for more beds and residential treatment facilities, as the state’s various initiatives and programs look for ways to house the chronically mentally ill who are homeless.

“The court would be (and already is) left with very few options and long wait times in trying to help place individuals in appropriate treatment,” he told San José Spotlight.

Manley’s denunciation over the lack of mental health and substance use services is one point everyone agrees on. On one end, Roland said if involuntary treatment wasn’t the default, and more community treatment centers were available, her clients could be receptive to medications on their terms. Hagar said the lack of a continuum of care throughout the state affects capacity and creates ongoing bottlenecks, causing people to fall through the safety net and relapse as they try to step-down in their recovery.

Kathryn’s safety net shredded decades ago.

But she refused to give up and sometimes prayers are heard. In December 2022, as Kathryn turned the corner to pick up a McDonald’s order for her 86-year-old passenger, there was Andy sitting on the curb.

After filing six missing person reports, happenstance brought them to the same spot a year and a half later. It took Kathryn 30 minutes to convince the police to take her son across the street to VMC emergency psychiatric services. The police kept telling her he had his rights and if he didn’t want to go they couldn’t make him.

“I am thinking, ‘He has poop all over his pants and you don’t think that qualifies as gravely disabled?'” she said.

This time the doctors filed for the conservatorship, and at age 48 Andy is finally receiving proper treatment. It’s been six months and Kathryn said her son is beginning to show insight into his illness. She has no doubt why.

“I consider this conservatorship as saving my son’s life,” she said.

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Silicon Valley family exposes need to reform conservatorship law

Oregon Bill Aims to Help Brain Injury Survivors Access, Locate Services

(KATU 2) — A bill in the Oregon Legislature is looking to help survivors of traumatic brain injuries (TBI) locate and access the multiple different types of critical services needed in their recovery.

“Every TBI is different and for me the biggest challenges are balance and coordination,” said Dave Nichols who is recovering from a TBI he suffered after a rock climbing injury five years ago.

He and his mother, Kathryn Nichols, brought multiple lawmakers to tears with their testimony supporting Senate Bill 420 during a hearing April 5. CONTINUE

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Oregon Bill Aims to Help Brain Injury Survivors Access, Locate Services

Interlochen man beats the odds on guardianship

By Mardi Link

INTERLOCHEN — Cruise control, 82 mph, cut to black, then a fleeting image of a good Samaritan who stopped to help and called 911.

Dwight Lewis remembers these scant details from March 2019, when he was driving on US-31 near Ludington, suffered an epileptic seizure and crashed his truck.

Twenty minutes, four broken ribs, a broken collarbone and a traumatic brain injury later, Lewis regained consciousness.

“I came to, I knew things weren’t right and I vaguely remember people coming up to my window with the Jaws of Life,” Lewis said. “Then nothing after that.”

Since the accident, Lewis has lived with his mother, Chris Lewis, in a house filled with art in the woods near Interlochen State Park.

When he smiles, the expression comes on quickly and envelopes his whole face.

A loud high-pitched “cuk-cuk-cuk” sound interrupts an interview with a reporter, Dwight stops mid-sentence, holding up an index finger.

“Pileated woodpecker,” he says, and there’s that smile.

The brain injury from the crash was actually Lewis’ second — multiple skull fractures in a 2011 skateboard accident not only caused the epilepsy, but put him into court-ordered guardianship — and working his way back to health and autonomy hasn’t been easy.

Lewis, 40, who’d trained as a chef, not only had to learn how to cook again, he had to re-learn how to drive, use a cell phone, handle his finances and get along with other people, including his mother.

“My injuries have caused me to burn some bridges between both my friends and my family,” Lewis says in a text, sent days after the interview. “My goal and mission now is to rebuild those bridges.”

Dwight moved in with Chris, and she became her son’s court-appointed guardian after the skateboard accident, but a few months after the highway crash, both agreed the arrangement was no longer working.

Traumatic brain injuries can result in something neurologists call “flooding,” in which a healing brain is overloaded by outside stimuli, making it physically impossible for a person to regulate their emotions and behavior.

“We argued a lot then,” Chris said. “He was often angry, which I understood, but it got to the point where we needed outside help.”

Court-appointed guardianships and conservatorships are a protective measure often associated with older adults, when a judge decides because of illness or memory loss, someone can no longer make their own decisions.

Younger people also can be appointed guardians by the court, often as the result of a catastrophic injury like Dwight’s.

Regardless of age or the reason for the guardianship, a review of probate court records by the Record-Eagle in more than a dozen Michigan counties shows court oversight often becomes permanent by default.

“Generally speaking, there’s an attitude that cognitive impairments don’t get better,” said Sheila Englehardt, a professional guardian in Roscommon County who is not connected to the Lewis case.

“Once someone is in the system,” Englehardt said, “it’s like this continuing rotation.”

Dwight committed himself to years of hard work — occupational, speech and ocular therapy, an in-patient stay at a neurorestorative program, months in a residential setting learning to live companionably alongside roommates, plus regular appointments with a psychiatrist.

“When he sets his mind to something, that’s it,” Chris said, “that’s Dwight.”

Earlier this month, his efforts paid off.

On Sept. 12, Dwight stepped off the “continuing rotation” of court oversight, after successfully petitioning Grand Traverse County Probate Court Judge Jennifer Whitten to terminate his guardianship.

Lee Storch of Guardian Services of Northwest Michigan, who succeeded Chris Lewis as Dwight’s guardian, told the judge she supported Dwight’s decision and helped him file the petition.

Both say Dwight’s abilities improved under guardianship.

“As skeptical as I was, it helped me and it helped my mom,” Dwight Lewis said of the time he spent as a ward of the court. “I do know that has not been everyone’s experience.”

Record-Eagle reporters in August 2021 began examining records in Michigan’s probate courts and have since reported a steady stream of worrisome accounts ranging from family isolation to outright theft.

These previous stories involved people of means and those on fixed incomes, people who live independently and those who require residential care, those with close family members and those without, but all had one thing in common: They began with a judicial decision meant to protect them by appointing a guardian or conservator.

Decades of reform attempts by governors, attorneys general and legislators have so far failed to alter the Michigan judiciary, which controls guardianship procedures and calls for probate courts to collect paperwork and keep records, but gives probate judges little enforcement power when things go awry.

Some familial and professional guardians in recent months have faced criminal charges after being accused of embezzling from clients.

In one recent case, a Macomb County woman, Lisa Ludy, was charged with nine felonies and could face up to 20 years in prison after being accused by Michigan Attorney General Dana Nessel of using Community Guardian Care, Inc., to conduct a criminal enterprise.

Nessel said in a press release that Ludy’s company was appointed guardian and conservator for an unnamed victim, then stole more than $100,000 from Social Security checks, an inheritance and proceeds from the sale of the victim’s home.

Thousands of guardians and conservators — acting as fiduciaries — serve in their roles without running afoul of the law. Professional guardians like Storch say it is hard to find qualified people, when guardians who serve those on Medicaid are paid less than $100 a month per client.

Storch said she is researching ways to turn her company into a nonprofit organization to seek alternative funding and have support from an advisory board.

“What we do is not all about the money,” Storch said.

Storch has more than 30 guardianship clients at any one time; she and her partner, Tracy McCain, provide limited and temporary services to as many as 50 others, she said.

Dwight is the only client she’s worked with who has “graduated” from guardianship, she said.

Once he began making — and keeping — medical appointments, working a part-time job at Oryana West, maintaining a good relationship with his mom and his girlfriend, and got his driver’s license reinstated, Storch said the court didn’t need to be involved in his life.

Dwight agreed.

“When all this started for me with the court, I had no hope,” Dwight said. “Then I began making some goals.”

Dwight said after the hearing, he and his girlfriend, Annette Abraham, went to Colorado for the weekend.

They toured Red Rocks amphitheater, where Dwight asked Annette to marry him.

She said yes.

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Interlochen man beats the odds on guardianship

‘Truly a Miracle’: Dancer Overcomes Brain Injury, Shares Story of Hope

by Kerry Clawson

 

(Akron Beacon Journal) – With every step, turn and bravura lift that professional ballet dancer Brian Murphy executed at a rehearsal with a dance partner in Akron earlier this month, he was thankful to be alive.

After suffering a severe traumatic brain injury (TBI) in a bike accident in late June in Toledo and having lifesaving neurosurgery, he’s thrilled to be back dancing full-strength.

This weekend, he’ll be making his first public performance since his accident, as a guest dancer for Cleveland’s Dancing Wheels at the Big Umbrella Festival for neurodiverse audiences at the Lincoln Center in New York. Murphy has danced with Dancing Wheels, which integrates dancers of all abilities, for a year. CONTINUE

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‘Truly a Miracle’: Dancer Overcomes Brain Injury, Shares Story of Hope

Conservatorship system is slow to change, despite availability of less restrictive options

By Carter Barrett

Ten years ago, Nick Clouse was riding shotgun in his friend’s Camaro when the car jerked and he felt himself flying through the air. Clouse’s head slammed against the passenger side window.

The traumatic brain injury caused severe memory loss, headaches and insomnia. Clouse, who was 18 at the time, didn’t recognize his friends and family.

Shortly after the accident, his mother and step-dad requested to be his legal guardian, which meant they’d be responsible for making all of his financial and health decisions. They said it would be temporary. A judge in Indiana made it official.

Years after recovering, Clouse wanted to make his own choices again — to put gas in his car, buy his daughter diapers and take his wife out for dinner without permission. But he ran into opposition. His parents didn’t want to give up their power, Clouse said, and he had to find a way to fight for his rights.

“They had 100 percent control over my life and I just didn’t have any say in what I did or anything,” Clouse said.

If a judge determines an adult is unable to make responsible choices, the person can be placed under a court-appointed guardianship. The arrangement is known as a conservatorship in some states.

It’s a system that’s come under scrutiny nationwide, after details on pop star Britney Spears’ conservatorship came to light. In September, Clouse testified at a U.S. Senate committee hearing focused on the issue of guardianship reform.

In recent years, there has been a growing shift toward less restrictive options that allow adults with physical or intellectual impairments more independence while providing them support for making decisions. Advocates for people with disabilities say the shift is long overdue, and some argue the system needs a complete overhaul.

“People with significant disabilities have long been discriminated against, because people think that they [lack] the ability to make decisions,” said Derek Nord, director of the Indiana Institute on Disability and Community.

While the disability rights movement in the U.S. has made “huge strides” on many issues, Nord said additional reforms and better oversight are needed to protect people from exploitation.

Guardianship cases most often involve people with disabilities, the elderly, people recovering from an injury or medical condition, and people with severe mental illness.

An official count does not exist, but the AARP estimates about 1.3 million adults in the U.S. are in legal guardianships. In Indiana, where Clouse lives, 11,139 adults are in permanent guardianships, according to state officials.

In Indiana, entering a guardianship starts with filing a petition. The petitioner can submit evidence, like a doctor’s report, and appear in front of a judge, who then decides if the person in question is considered to be incapacitated.

The judge can establish limitations for the guardianship, although they rarely do, according to Indiana Disability Rights attorney Justin Schrock.

“We’re talking about decisions about where to live, whether to get married, where to work, what medical care to receive, what to do with their money,” Schrock said. “They really do lose all of their most fundamental basic rights.”

Some guardianships are necessary, but advocates for reform argue they’re overused, since most of the time people with disabilities can make choices for themselves — sometimes with guidance — and should maintain that right.

“Before I entered this field, I assumed that [entering a] guardianship was a fairly innocuous step,” Schrock said. “I also assumed that there were a lot of protections in place to prevent unnecessary guardianships from being established, which is absolutely not the case.”

Legal guardianships should not be the default for people who need help making decisions, said Kristin Hamre, social work professor at Indiana University Bloomington. It’s in taking risks that people learn and grow as individuals — and restrictive legal arrangements like guardianships rob people of that opportunity.

“The right to risk is so important,” Hamre said. “Risk is where life happens, right? You begin walking, you might fall; you begin driving, you might crash.”

Over time, Clouse’s traumatic brain injury improved. He started working as a welder, met his future wife — and got his parents’ permission to marry her. Clouse wanted out of the guardianship, but he said his parents resisted.

The lawyer representing Clouse’s mother and stepfather did not return Side Effects Public Media’s request for comment.

People under a legal guardianship face a Catch-22. To regain his independence, Clouse needed to speak with a lawyer and get legal advice. But that would have required his parents’ approval since they controlled his finances.

Because of the way some state laws are written, guardianship cases often lack due process, said Robert Dinerstein, head of the disability rights law clinic at American University in Washington, D.C.

Many states’ guardianship laws ensure a right to legal counsel for people at risk of entering a guardianship. But that’s not the case in Indiana. The law allows petitioners — often a parent or family member — the option to present a consent form signed by the person under consideration for a guardianship, which deems them “incapacitated” and effectively waives their right to contest the hearing or even be present at it.

Indiana law also does not require petitioners to submit medical evidence to the court, although some courts have local rules requiring it.

“I’ve seen over and over again, these guardians’ attorneys will have the individual sign this consent form, file it along with a petition, oftentimes with no medical evidence,” Shrock said. “And some of these courts are just looking at that and saying, ‘OK,’ and then granting guardianship without ever having even laid eyes on this individual.”

Since guardianship cases take place in county-level courts, there’s tremendous variety in how these cases are handled. Larger counties with probate-specific courts can dedicate more time and resources to the hearings, while smaller county courts have a much larger breadth of cases, limiting a judge’s expertise in one area.

A task force formed to examine the use of legal guardianships in Indiana reported that no medical evidence of incapacity was presented in one in five guardianship cases in Indiana. The 2012 report also states that in cases where evidence was presented, the reports were often incomplete or illegible.

The burden of proof — to convince the judge the guardianship is unnecessary — tends to fall on the person with a disability, which differs from most other legal proceedings, Dinerstein said.

Since people have a right to a lawyer in criminal cases, Dinerstein argues that people at risk of entering guardianships should have the same right.

“I think the level of loss of liberty [in guardianship cases] makes a really strong case that there ought to be” a right to legal counsel, he said.

It matters because once a person is in a guardianship, it is extremely difficult to get out of it.

“It’s like Hotel California,” Dinerstein said. “Once a guardian is appointed, even if circumstances change where you no longer think you need it, it’s really hard to get courts to restore your capacity.”

Clouse is now 28 and lives in Huntington, Indiana. With the help of Indiana Disability Rights attorney Justin Schrock, Clouse’s guardianship was terminated in August 2021.

Shortly after, he took his wife and daughter out for dinner — a small luxury after life under his parents’ guardianship.

“I didn’t have to worry about my card getting declined … and bought my daughter a big piece of chocolate cake,” Clouse said. “That made me feel good that I could just kind of splurge a little bit.”

In 2019, Indiana joined a handful of other states — including Delaware, Texas, Ohio and Wisconsin — to pass a law requiring judges to consider less restrictive alternatives to guardianships.

Supported decision-making is one of these alternatives. Adults in these arrangements consult a support team, such as friends, family, social workers, case managers or paid support members, about big decisions in their lives. But, unlike in a guardianship, the individual can still make the final decision.

“Many of us … run important decisions by other people in our lives who are important to us — family, friends,” Dinerstein said. “[Then] you get to decide whether to listen to the advice.”

The year before the new law passed, Jamie Beck became the first person in Indiana to transition from a legal guardianship into a supported decision-making arrangement as part of a pilot program exploring less restrictive guardianship alternatives.

Beck has a mild intellectual and developmental disability and was placed in a guardianship at the age of 19 after her parents died. She spent a year in a nursing home, where she said she was bored and spent her time learning American Sign Language. Beck remained in the guardianship for eight years, even after demonstrating she could live independently and support herself financially.

“She was just doing tremendously … and everyone felt she didn’t need a guardianship any longer,” said Judge Greg Horn, who terminated Beck’s guardianship. “It wasn’t like we were going to send her on her way and let her struggle with life’s challenges.”

To ensure she’d be supported once the guardianship was terminated, the court worked with Beck to come up with a group of advisors she trusted to help her make decisions.

Beck said the supported decision-making agreement lets her have more say in her life. She’s now 31 and lives in an apartment in Muncie, Indiana. She works as a housekeeper at a local hospital and spends her free time playing Pokemon Go.

“I get to do more things like a typical normal person would,” Beck said.

She can seek medical care and travel out of town without needing anyone else to sign off on those decisions.

At least 11 states and Washington, D.C. have passed supported decision-making laws.

In Ohio, lawmakers passed reforms to close loopholes in the guardianship system after a 2014 investigation from the Columbus Dispatch revealed lawyers were becoming guardians for people with disabilities and charging attorney’s fees to perform basic duties, like shopping and cleaning. Today, the state requires guardians to undergo training and education and allows people under a guardianship to file complaints to the court.

But Kevin Truitt, legal advocacy director for Disability Rights Ohio, is skeptical those reforms have led to major improvements for people with disabilities.

“Maybe some people have benefited from these reforms,” Truitt said. “But I worry not a lot has changed for many, many people across the state” because people under guardianship may not be aware of the new law’s provisions.

As part of the new law in Indiana, guardians are required to file reports every other year, documenting whether the guardianship remains necessary and if less restrictive options have been considered.

The law also requires judges to document that less restrictive alternatives have been considered before full guardianships are approved.

But Schrock, the attorney with Indiana Disability Rights, said not much has changed on the ground.

“I see … guardianship petitions that are still filed today that don’t even mention whether less restrictive alternatives have been assessed in any way,” Shrock said. “And that has been … a minimum requirement since July 1, 2019.”

Schrock said even when reports are filed by guardians, they are rarely scrutinized by judges.

State officials in Indiana say they’re not tracking how many people are opting for supported decision-making agreements in lieu of legal guardianships. It’s hard to determine because these agreements can take place outside of a courtroom.

Kim Dodson, CEO of the Arc of Indiana, said she has only heard of a few cases where people are looking to revoke a guardianship.

“That’s not enough, right? We should have a lot more than that, especially two years after the implementation of supported decision-making,” Dodson said.

Dodson thinks the COVID-19 pandemic slowed the education campaign around supported decision-making, so judges and backed-up courts are behind on implementing the changes.

But she’s hopeful that over time, more people will understand the importance of ensuring people with disabilities are placed in the least restrictive arrangement possible.

“We really need to educate attorneys and judges, and make sure that they know about this new alternative, and that they get sold on it,” Dodson said. “And that just hasn’t happened to the extent that we’ve needed it to.”

In Indiana’s upcoming legislative session, Dodson said her organization will be advocating for additional guardianship reforms, such as requiring schools to educate parents of children with a disability on supported decision-making.

This story comes from Side Effects Public Media — a public health news initiative based at WFYI.

 

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Conservatorship system is slow to change, despite availability of less restrictive options

Plaintiff claims probate court complicated control of his father’s estate

Posted by Gabriel Tynes

 

Ryan Peters was just 7 years old in 1991 when his father, Michael, suffered a traumatic brain injury. Michael, the agent and owner of several McDonald’s franchises in Mississippi, was a passenger in a car that left the road and hit a tree. A branch came through the window and broke Michael’s neck, destroying his frontal lobe and leaving him both paralyzed and in a coma. He partially recovered with treatment and rehabilitation, but lived in a non verbal and dependent state for the next 29 years, until his death in June 2020. 

 

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Plaintiff claims probate court complicated control of his father’s estate

Doctors Refused Mother’s Wish to Treat 20-Year-Old “Brain Dead” Son After Auto Accident, So He Died

by Bobby Schindler

On May 31, 2002, 18-year-old Brenden Flynn was involved in an auto accident and suffered a traumatic brain injury. He was med-flighted to a hospital in Syracuse, New York.

Shortly thereafter, he was transferred to Park Ridge Hospital near Rochester, where doctors notified his mother, MaryJo Flynn, that Brenden had a zero chance of recovery or having any meaningful “quality of life.” They suggested ending his life.

If Brenden were to survive, his doctors said, he would be in a nursing home for the rest of his life. Brenden’s mother, not wanting to make the decision to end her son’s life so quickly, asked the doctors to continue treating him.

On September 9, 2019, 20-year-old Brandon Fuller was involved in an auto accident and experienced a traumatic brain injury and was med-flighted to Sanford Medical Center, located in Bismarck, North Dakota.

Shortly thereafter, doctors informed his mother, Amanda King, that Brandon was “brain dead” and had a zero chance of recovery or any meaningful “quality of life” and suggested ending his life. Brandon’s mother, not wanting to make the decision to end her son’s life so quickly, asked the doctors to continue treating him.

Brenden Flynn was afforded more time. Today, Brenden is happily married to his wife of ten years, Nicole, and they have four beautiful children.

Brandon Fuller was not afforded more time. His mother’s requests were denied. Today, Brandon Fuller is dead.

In response to the death of my sister, Terri Schiavo, in March 2005, my family established the Terri Schiavo Life and Hope Network, which provides a 24/7 National Crisis Lifeline service for families to call if a family member or at-risk patient is having life-sustaining care either denied or withdrawn. Since its inception, the service has assisted on average nearly 20 patients and families in crisis per month, including Brandon Fuller’s mother.

Sadly, it has become disturbingly evident that we are witnessing a deterioration of our health care system, one by which treatment decisions made in the best interest of the patient—as determined by their family—are rapidly abandoned for those made in the best interest of the hospital.

Sanford Medical Center refused King’s request for additional time after the hospital’s ethics committee agreed with their doctor that Brandon was not going to improve. As a result, within a week of Brandon’s brain injury a day and time were scheduled to remove his ventilator. However, Brandon died before this could take place, as a consequence of the hospital’s refusal to treat his blood pressure, which was unstable due to his medical condition.

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Doctors Refused Mother’s Wish to Treat 20-Year-Old “Brain Dead” Son After Auto Accident, So He Died