The Florida Bar: Measure Would Have Courts Prioritize 'Supported Decision Making' When Appointing Guardians for People with Developmental Disabilities

by Jim Ash

Courts would have to consider “supported decision making” before appointing a guardian for people with developmental disabilities under a bipartisan measure that is moving through the Legislature.

The Senate Children, Families and Elder Affairs Committee voted unanimously January 17 to approve SB 446 by Sen. Corey Simon, R-Tallahassee. Rep. Allison Tant, D-Tallahassee, is sponsoring the companion, HB 73.

“This bill is a great bill, it really restores the rights of those folks with disabilities, giving them a voice as to their needs,” Simon told the committee. “I ask for your favorable support.”

In weighing the appointment of a guardian, a court would be required to consider the person’s “ability to independently exercise his or her rights with appropriate assistance,” according to the bill. The bill defines supportive decision making as “an agreement in which the power of attorney grants an agent the authority to receive information and to communicate on behalf of the principle without granting the agent the authority to bind or act on behalf of the principle in any subject matter.”

The bill makes it clear that a supportive decision-making agreement is “not a durable power of attorney.”

Simon told the committee the bill would also make it easier for people with developmental disabilities to have their rights restored.

“It expands the rights of those seeking restoration of capacity to include whether or not the individual is capable of independently exercising his or her rights, to make those decisions with appropriate assistance,” Simon said.

Simon said another provision would add supportive decision making “to the list of resources provided to students with disabilities aged 18-22, still in school, whose parents want to continue to be involved in their education-making decisions.”

According to a staff analysis, the measure has the potential to “reduce costs to the court system for guardianship and guardian advocate proceedings to the extent that those proceedings are replaced by supported decision-making agreements.”

Disability Rights Florida, ARC, and the Florida Smart Justice Alliance support the bill.

SB 446 cleared Judiciary 9-0 on January 9. It faces one more hearing in Rules before reaching the Senate floor.

HB 73 cleared the Children, Families & Seniors Subcommittee 15-0 in November. It faces hearings in the Civil Justice Subcommittee and the Health & Human Services Committee.

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The Florida Bar: MEASURE WOULD HAVE COURTS PRIORITIZE ‘SUPPORTED DECISION MAKING’ WHEN APPOINTING GUARDIANS FOR PEOPLE WITH DEVELOPMENTAL DISABILITIES

State doesn't track how many developmentally disabled people act as own guardian

By Daniel J. Chacón

Angelita Chacon

The state of New Mexico doesn’t know how many of the estimated 6,800 individuals enrolled in the Developmental Disability Waiver program act as their own guardian.

Tracking guardianship status for individuals receiving service under the so-called DD Waiver program “is not a requirement” for the Developmental Disabilities Supports Division of the state Department of Health, department spokeswoman Jodi McGinnis Porter wrote in an email.

“Determining whether someone should have a guardian depends on individual circumstances rather than a person’s general classification as intellectually and/or developmentally disabled,” she wrote.

The lack of guardianship information emerged as the state reviewed the failings of the DD Waiver program, which was designed to provide care to people with intellectual and developmental disabilities. The review and wellness checks on every enrollee across the state were triggered by the death of an autistic woman who was enrolled in the program.

Mary Melero, 38, was her own guardian before her death in February.

“A person who is intellectually and/or developmentally disabled has the same basic legal, civil, and human rights and responsibilities as everyone else,” McGinnis Porter wrote. “Additionally, they have the right to self-determination and self-direction, unless deemed incompetent or incapacitated by court order, [and] individuals have the right to make decisions in their best interest.”

U.S. Customs and Border Protection agents discovered Melero wrapped in a blanket and lying on the floorboard in the back of a passenger van Feb. 27 after an inspection at the Bridge of the Americas Port of Entry in El Paso.

Authorities have said Melero had numerous open wounds, including chronic bedsores with exposed bone and lacerations throughout her body.

“She was found to have labored breathing and stitches on both lips,” according to an arrest warrant affidavit for her caregiver, Angelita Chacon of Rio Rancho, and her two alleged accomplices.

Melero “was described as if she wanted to speak; however, only ‘tears fell from her eyes,’” the affidavit states.

While Melero was her own guardian while living with Chacon, McGinnis Porter said she had a court-appointed guardian at the time of her death.

Shane Maier, an attorney for Melero’s family, said Melero was autistic but able to make decisions on her own. The family plans to file a wrongful death lawsuit against the state and the provider responsible for Melero’s care, among others.

“She knew what was right and wrong,” he said in an interview. “She would say ‘no’ to stuff she did not like. … She had autism — she was on the spectrum — but it wasn’t overly severe.”

Tim Gardner, director of legal services for Disability Rights New Mexico, a nonprofit whose mission is to protect, promote and expand the legal and civil rights of people with disabilities, said the only way to qualify for guardianship is for someone to petition a court to have a guardian appointed.

“In our office, we would say it’s too easy to get people into guardianship while some people would say it’s too hard,” he said. “But what is clear is that … a guardianship is a very significant deprivation of someone’s civil rights, and so it shouldn’t be easy.”

Melero’s family held a memorial service Saturday at Westside Community Center Park in Albuquerque to honor Melero “and rally against the mistreatment of unprotected people like Mary who have been abused and mistreated by an unjust system of caretakers and medical professionals under the DD Waiver Program,” they said in a statement issued by the Gauthier & Maier Law Firm.

“The family and community seek a change for future generations so that developmentally disabled persons do not have to go through Mary’s pain,” they said.

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State doesn't track how many developmentally disabled people act as own guardian

Families of developmentally disabled people beg Gov. Hochul for more staffing

They want the governor to inject more cash into the budget to make sure families needing services are not left behind. CBS2's Carolyn Gusoff reports.

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Families of developmentally disabled people beg Gov. Hochul for more staffing

Home aide shortage threatens care for developmentally disabled Arkansans

By Benjamin Hardy and Juliet Schulman-Hall

In December, Governor Asa Hutchinson announced a plan to bring relief to thousands of families stuck on a waiting list for Medicaid-funded services for people with intellectual and developmental disabilities.

Under the governor’s plan, Arkansas will spend an additional $37.6 million each year to expand a program that pays for direct care workers and other services that help developmentally disabled people stay in their homes or in a community-based setting, as an alternative to institutionalization. These home and community-based services are sometimes called “waiver” services because they are funded through a waiver agreement between federal Medicaid authorities and the state. About 5,000 clients are now on the Arkansas waiver program.

The governor has said all of the roughly 3,200 families now on the waitlist – some of whom have been waiting for more than a decade – should be served by June 2025. Yet the plan may run into a problem. Arkansas, like many states, is facing a shortage of direct care workers, the frontline staff who help disabled, elderly and other clients with daily activities like eating, bathing, getting dressed and using the bathroom.

Teresa Dodson, 49, is the primary caregiver for her 22-year-old son, Nathan, who has autism and requires around-the-clock supervision.

“The governor has been releasing more of the waitlist people to start receiving coverage services,” she said. “That’s fabulous. It’s not going to help us families if they can’t find staff. And the more people we release off of that waiver waiting list, the more people that need staff.”

From 2017 to 2020, the number of nursing assistants, home health aides and personal care aides in Arkansas dropped slightly, from about 41,000 to about 39,000, according to PHI, a national nonprofit that advocates for direct care workers. The workforce likely decreased further over the past two years, fueled by the COVID-19 pandemic and high demand for low-wage workers in other sectors.

Direct care workers are typically paid minimum wage – or close to it – to perform physically and emotionally demanding work. Arkansas’s minimum wage is $11 an hour.

Leaders of home and community-based service providers say finding workers has become much harder over the last year and a half. In January 2021, Easterseals Arkansas had about 14 openings for direct care workers, according to Ron Ekstrand, the CEO of the Little Rock-based provider. By April of this year, it had 52 openings. (Easterseals employs about 250 direct care workers total.)

“There’s something wrong with a system in which we can’t find enough people,” Ekstrand said.

Some help is on the way. In February, the Arkansas Department of Human Services (DHS) announced a $112 million “workforce stabilization incentive” for providers of home and community-based services. Organizations serving developmentally disabled Arkansans will receive about $52 million for worker retention and recruitment, according to DHS spokesman Gavin Lesnick. The remaining $60 million has gone to providers that serve elderly people.

The funding is part of the American Rescue Plan, the federal pandemic relief package signed by President Biden in 2021. The bill provides another $12 million for technology initiatives and $27 million for renovation and construction projects for both groups of Arkansas providers, to be disbursed later this year.

Providers say the one-time money is desperately needed, but it won’t solve their long-term workforce problems. And with the state opening up new waiver slots, families who have been waitlisted for years may still find themselves waiting for services.

Syard Evans is the CEO of Arkansas Support Network, a provider with offices in Springdale, Fort Smith, Camden and Jonesboro. Currently, the organization “does not have the necessary resources to support the clearing of the waiver waiting list,” she said.

As of mid-May, Evans said, almost 40 individuals who had been referred to Arkansas Support Network for services were facing delays in receiving help due to the staffing shortage.

Low wages, tough jobs

Before the pandemic, Evans said, Arkansas Support Network typically had between 85 and 100 job openings a month and about 120 applications. The numbers began to worsen in early 2021. By April of this year, the organization had 182 open positions and just 90 applications.

When employers in other sectors struggle to find workers, they typically increase their starting pay. Providers of home and community-based services don’t have that option.

“Fast food can add 50 cents to every combo meal and generate additional revenue to raise their minimum wages to $15, $16, $17 an hour – we cannot. We’re locked into state Medicaid reimbursements,” Evans said. “We do not have the ability to adjust our pricing or what we’re being paid or what we’re able to bill.”

Starting pay for a direct care worker at Arkansas Support Network is $12 an hour but increases based on education and experience. On average, the direct care workers she hires make $14 an hour, Evans said.

The problem of recruitment predates the pandemic, she said.

“It is a field that has been underfunded and under-resourced from the beginning,” Evans said. “In the mid-’90s, there were organizations that were putting out reports talking about the collapse of the industry if we cannot find a sufficient workforce.” The labor shortage created by the pandemic “looks like it potentially could be the straw that breaks the camel’s back.”

Ekstrand said Easterseals participates in an employee retention credit program from the federal government that allows it to pay direct care workers $15 an hour and provide some paid time off and benefits. But the federal program is temporary, and it’s not clear Easterseals can keep paying $15 an hour when it goes away.

“We can’t keep doing it if [Medicaid] reimbursement rates don’t go up,” Ekstrand said.

Ekstrand said he believes many people would enjoy direct care work if they could make a decent living doing it.

“There are people who are wired in a way that they are caregivers by nature,” he said. “But they look at that starting pay and the benefits, and they see these other competitive offers, and they’re like, ‘I’ve got to put food on my table. I gotta pay my rent.’ And so, we’ve got to become more competitive with what we’re offering.”

Low pay, and the high turnover that comes with it, can also mean a lower quality of care for families.

For the past four years, Teresa Dodson has been Nathan’s only caregiver – a decision she made in an attempt to address behavioral problems her son had developed at school, Dodson said. Nathan’s behavior has since improved, and Dodson recently started bringing a direct care worker into their home for a few hours each week. But she worries that the worker will leave just as Nathan grows to trust her.

“This [direct care worker] has been hired to come work with [Nathan for] $11 an hour. She can’t survive on $11 an hour. So about the time that my son gets used to her … I have absolutely no doubt she’s going to go find a better-paying job,” Dodson said.

Dodson, who lives in Hot Springs, is a paid caregiver herself. Like many parents of adults with developmental disabilities, Dodson gave up guardianship of her son when Nathan turned 18 so that she could be compensated by Medicaid through a provider organization. (Her husband remains Nathan’s legal guardian.) Although Nathan requires around-the-clock care, she said, the provider can only pay her for up to 60 hours per week.

Dodson’s new direct care worker is now in the home for about 8 hours weekly. “I had to reduce the hours that I’m getting paid by the amount of hours that she is working. So if she works 10 hours a week, I’m only allowed to bill for 50 hours a week,” she said. The worker’s hours are also constrained, Dodson said, because she has three clients but is not allowed to work more than 40 hours total each week.

Dodson said the situation was “ludicrous,” considering Nathan requires 24/7 care. “It’s just very frustrating that, because of how little [the provider] is getting paid, they can’t pay me for what my son actually needs,” she said. Her emotional health has suffered under the stress, she said, but she can’t find time for therapy because she has to stay home with Nathan. (Click to continue reading)

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Home aide shortage threatens care for developmentally disabled Arkansans

Warrants issued for couple guilty in guardian fraud case

SANTA FE, N.M. (AP) - A federal judge issued bench warrants Monday for the former president of a now-defunct nonprofit that provided guardianship services for vulnerable and special needs clients and her husband after they both failed to appear for sentencing for money laundering and other crimes.

Susan Harris, 73, was facing a minimum of 30 years in prison while her husband, William Harris, faced seven years for crimes related to the embezzlement of an estimated $10 million.

As one of New Mexico’s largest guardianship firms, Ayudando Guardians Inc., was shuttered by federal authorities in 2017 after the embezzlement was exposed. Some of the more than 800 victims who lost money were expected to address the court as the hearing continued Monday.

Defense attorneys told U.S. District Judge Martha Vazquez they could not reach the couple by phone Monday when they failed to show up for court.

The couple had been free pending sentencing after surrendering their U.S. passports and putting up their home in an affluent Albuquerque neighborhood as security.

Two other defendants did appear for sentencing. They are former chief financial officer Sharon Moore and Harris’ son Craig Young.

Federal prosecutors say the defendants used client trust, savings and other funds to finance a lavish personal lifestyle that included luxury vacations, and upscale homes and vehicles.

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Warrants issued for couple guilty in guardian fraud case

See Also:
Who guards the guardians?: Judge vows to fight for clients who lost trust funds

Guardianship company closed, U.S. Marshals Service says

Lawmaker: Guardian system ‘turned ugly’

Video shows healthcare staff punching, beating disabled man with belt

Investigation found at least five employees at the mental health facility beat a man, and allowed other patients to join in.

Author: Andy Pierotti, Lindsey Basye



GORDON, Ga. — The family of a mentally disabled Georgia man has released video showing their loved one being repeatedly beaten by staff hired to care for him.

Brian Jarrad, the family's attorney, said the family wanted to release video of the 2013 incident now to warn the public that neglect is happening at facilities all across Georgia.

“These are some of our most weakest, our most vulnerable citizens. So, it’s important to know and watch and to see when they’re not being cared for appropriately,” said Jarrard.

The Macon attorney represents 55-year-old Joey Cason. When Cason’s family could no longer care for him, they admitted him into Total Care, a facility in Gordan, Georgia, licensed to care for the developmentally disabled.

“Physically, he is not disabled. He is able to function physically, but he is severely mentally disabled," explained Jarrard.

Surveillance video recorded on November 7, 2013 shows staff repeatedly hitting Cason with belts, punching him on the ground and allowing other residents to hit him.

At one point, staff appears to be taunting Cason with food and laughing at him.



“I think anybody would find the video despicable,” said Jarrard. “It was heartbreaking. It made me angry to think of individuals who were being paid to care for him were engaged in just despicable abuse.”

Gordon Police charged a caretaker named Shakia Smith with battery and abuse/neglect of an elder person.

Jarrard said the case against the former facility owner is still pending. Carson is now at a different facility in south Georgia and is doing well, Jarrad said.

The Georgia Department of Behavioral Health and Developmental Disabilities revoked the facility’s license after an investigation.

Total Care’s former owner, Pamela Reaves, declined to comment about the pending litigation. Her attorney, Wayne Kendall, did not return follow-up questions sent by email.

The video’s release comes on the heels of Georgia seeking to end nearly 10 years of federal supervision of its mental health care services. The Reveal Investigation also uncovered a rise in abuse, neglect and exploitation at state licensed mental health care providers.

Tune into 11Alive Thursday night at 11 p.m. for The Reveal's investigation into Georgia mental health providers and other abuse claims against facilities across the state.

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Video shows healthcare staff punching, beating disabled man with belt

Who guards the guardians?: Judge vows to fight for clients who lost trust funds

The civil case of Ayudando Guardians Inc. v. Desert State Life Management involves two companies accused of siphoning client accounts for personal gain.

With their owners absent for an initial hearing in the lawsuit Wednesday, a state district judge heard from those who are picking up the pieces after the shocking collapse this summer of the two New Mexico nonprofit companies that for more than a decade specialized in serving developmentally disabled, elderly and otherwise vulnerable clients.

In the audience were lawyers from the U.S. Attorney’s Office, which is prosecuting Ayudando Guardians and its two principals on criminal charges of embezzling at least $4 million in client funds; and Liane Kerr, whose former husband Paul Donisthorpe has been accused by state and federal authorities of embezzling $4 million from his clients’ accounts at Desert State. He hasn’t been criminally charged.

At issue Wednesday was how to proceed with the lawsuit filed by Ayudando Guardians on June 6 seeking damages from Desert State on behalf of seven clients. Those clients entrusted their funds for Desert State to manage, the lawsuit states.

That case was filed a month before Ayudando’s two principals, Susan Harris and Sharon Moore, and the company itself, were indicted July 11 by a federal grand jury for embezzling more than $4 million from their clients. The U.S. Marshals office has been running Ayudando since then, with the prospect of a shutdown of the company imminent. Harris and Moore have pleaded not guilty.

Donisthorpe didn’t attend Wednesday’s hearing. He hasn’t responded to requests for comment and is reportedly brain damaged from a botched suicide attempt.

His wife of 31 years, Kerr, filed for divorce in March after state financial examiners began to look into Desert State’s books. She appeared in court with her attorney Wednesday, but didn’t comment. In court records, Kerr has denied any involvement in the alleged embezzlement scheme or the trust company business.

Both companies are being dismantled by government agencies in light of the fraud and embezzlement allegations.

Judge Alan Malott on Wednesday denied a motion to dismiss Ayudando’s claims against Desert State, vowing to make sure the seven Ayudando clients who may have lost trust funds at Desert State “don’t fall through the cracks” because their guardian is under federal indictment.

“There may be nothing left, but I’m going to try to get as close to the penny as I can get,”said Malott.

Desert State in early August was placed into the receivership of the state Financial Institutions Division.

An estimated 70 people who were clients of Desert State have lost some or all of their trust money, state officials say. Malott, during the hearing, said state district judges are in “crisis management” mode trying to find replacement guardians for Ayudando’s clients.

State FID attorney Kevin Graham told Malott that families and individuals, some with “limited” ability to understand “what’s going on in the case,” have contacted the state to find lawyers to help recover their missing trust funds.

Meanwhile, the state Public Accountancy Board last week revoked Donisthorpe’s CPA license.

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Who guards the guardians?: Judge vows to fight for clients who lost trust funds