I-Team: Mother fights to get disabled son out of guardianship

by Danielle DaRos

Omar and Ruthelyn Rojas during a recent visit (Rojas)

PLANT CITY, Fla. (CBS12) — While many stories about guardianship involve senior citizens, this one shows that young people can be placed into the system, too.

Omar Rojas was removed from his mother's home, placed into a group home, and put under the control of a court-appointed, professional guardian after he turned 18.

Now his mother, Rutheyln Rojas, is fighting to end the guardianship and get him back.

The guardianship system is designed to care for people who are incapacitated and cannot manage their own affairs. It is often reserved for people without family members who are willing and able to care for their loved ones.

"We are able to take care of him and we want Omar back," Ruthelyn told the I-Team from her home in Plant City. "We ask God day and night to bring Omar back home."

A MOTHER'S MIRACLE

Ruthelyn didn't think she could have children, so when she found out she was pregnant with Omar it felt like a miracle.

Childbirth came with challenges. During delivery, Omar lost oxygen and suffered brain damage, leaving him severely disabled with cerebral palsy.

Doctors weren't sure he would live more than a few months -- so for Omar to be approaching his 22nd birthday feels like a miracle to Ruthelyn, too.

"If he's alive, it's because I took care of him for 20 years with extreme perfection," she said. "I was with him day and night, every single appointment, school activities, everywhere."

The family won a large settlement from the hospital due to Omar's birth-related injuries. They used that money to provide constant, in-home care for him.

GUARDIANSHIP BEGINS

Around the time Omar turned 18, his parents were going through a contentious divorce.

Both mother and father petitioned the court to be his guardian. Instead of choosing between them, a judge appointed a professional guardian named Susan Whitney to oversee Omar's care and finances.

At first, Ruthelyn thought a guardian would be a good thing -- but she, and Omar's care manager, started to become alarmed by the guardian's actions.

In a letter sent to the Office of Public and Professional Guardians, the state agency that oversees guardianship in Florida, Omar's care manager describes concerns about Whitney, calling her "inappropriate, unethical" and even "threatening" to Ruthelyn.

The care manager writes that she was concerned about certain medical decisions the guardian made, like reducing the food in Omar's feeding tube.

She told the OPPG it would be a mistake to remove Omar from his "loving, caring" home to put him in a group facility.

And she quoted the guardian as saying, "I'm the mom now. I make the decisions" when it came to Omar's living situation.

REMOVING OMAR

Ruthelyn remembers the day Omar didn't come home from school. She was waiting for him to get off the bus, as usual, but he wasn't there.

She frantically called the school, her ex-husband, and guardian Whitney to try to find out if something happened to her son.

She says it took hours but she eventually heard back: the guardian took Omar from school and to a group home, without notifying his parents.

Later, she moved Omar to a new facility, even further away. Ruthelyn says she has to drive two hours one way to see her son, and can only make the trip about once a week due to her work schedule.

Initially visits were limited and supervised.

"It’s horrible," she said. "It’s taking something from you. It’s my son. My son. And every time we say bye Omar, he knows that word."

Ruthelyn's new focus is getting Omar out of the guardianship and back home where he has family, friends, and a church community.

She's praying for another miracle in her son's life: for a judge to reverse his decision and end the guardianship before it's too late.

"We don’t know how long Omar will live, but we want to be together," Ruthelyn said. "We want Omar with us. I want to have the privilege, the mother privilege, to take care of my son day and night."

STATE INVESTIGATION

The OPPG investigated complaints against guardian Whitney, but found the evidence against her was "insufficient" and declined to take action or recommend discipline.

The report states that Ruthelyn and her ex-husband have "set aside their differences" and asked the judge to end the guardianship so Omar can come home - but to this day, he is living in a care facility, under the control of a guardian.

Through her assistant, Susan Whitney declined to be interviewed for this story. She said she cannot comment on active cases.

The OPPG report contains a summary of their interview with her and her lawyer. They deny that she was ever verbally abusive to Omar's family and they claim Omar's family became dependent on the hospital settlement money, even suggesting that the funds were mismanaged.

Ruthelyn says she is hoping a lawyer will hear her son's story and take on the case, so she can continue to petition the court for custody.

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I-Team: Mother fights to get disabled son out of guardianship

Guardianship? Website launched for parents of disabled children headed for adulthood

Managing the life of a special needs child can keep parents so busy that they can be gobsmacked by one of life’s celebrated milestones, their child’s 18th birthday.

As the candles go out and the cake is reduced to crumbs, some discover that they may be proud parents, but they are no longer welcome at their son’s doctor appointment, can no longer discuss their daughter’s medications with the insurance company or manage their kid’s finances.

While some arrive on that day well-equipped with the proper legal documents to manage the future, attorney Michelle Kenney says she’s seen too many moms and dads who don’t and then struggle to determine their next steps.

That’s why Kenney decided to work with the Florida Justice Technology Center to develop a website that guides parents of children with intellectual and developmental disabilities through their options, which include guardianship, guardian advocacy and estate planning. The goal for Turning18.org is to help parents decide which option is best based on their children’s abilities.

The topic is dear to Kenney who grew up alongside a younger brother with a developmental disability.

“I’ve been in the guardianship community for nearly 20 years,” Kenney said. She worked as a legal assistant and had a nonprofit that was providing guardian training and legal resources to people in Broward and Palm Beach counties.

Then Kenney decided law school was the next logical step. “All the excuses I had colleagues kept shooting down,” says the 48-year-old who earned that degree in 2016.

As a lawyer, Kenney was prohibited by Bar rules from offering those legal resources at the nonprofit so she closed shop and sought somewhere to redirect the money and effort. She said the website concept was born in a brainstorming session with the FJTC, a non-profit aimed at creating online legal tools for the state’s vulnerable populations.

“Parents don’t always appreciate that once (their children) are 18, being mom and dad is no longer good enough,” Kenney said.

The Q&A style of the site is intended to be akin to an interview to make sure parents don’t miss an option or skip a step on the path to helping manage their child’s future, while allowing the young adult to retain as many rights as they can safely wield, Kenney said.

The FJCT modeled the website on another recent effort - a site called Florida Name Change that walked transgender Floridians through the process of changing their names and update their gender markers on legal documents, said Turning18′s developer, Brandon Thomas.

Turning18.org launched in the fall and includes various forms parents can use to proceed.

The challenges parents face as their children become legal adults are not limited to those whose children are disabled.

It is wise for all parents to plan with their teenagers for the day when the parents don’t have the same legal authority over their children’s lives, said Mitchell Kitroser, a local attorney who routinely guides his clients through the process of acquiring power of attorney and the appointment of a health care surrogate.

“It’s just basic emergency planning. Anyone over the age of 18 ought to have it,” said Kitroser, who had not yet visited the Turning18 site.

But for the disabled child who isn’t able to plan larger aspects of life, planning is crucial.

“For some families, what I found is that there’s a lot of either misinformation or well-meaning friends or advisers who say, ‘Just go do this or that,’” Kenney said. “Then someone calls my office: I’m told I need to do a guardianship because my son has autism. I say, ‘Tell me why.’ The diagnosis doesn’t tell me much. Because someone told them to go do this, they aren’t thinking about whether this is what they need or what their options are.”

Kenney hopes the website will prove to be a better, more accurate resource for those parents - and one that gives parents time to talk over the decisions in the privacy of their own home before seeking an attorney.

“Families get to a point where they’re so overwhelmed with day to day care, they’re almost immobilized when someone puts something else on their plate,” she said. “But I’d never want someone to have to do this in a crisis.”

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Guardianship? Website launched for parents of disabled children headed for adulthood

Teaching parents about guardianship of disabled children

Kaye Dent, an attorney with Frisse & Brewster Law Offices in Effingham speaks about guardianship vs powers of attorney

EFFINGHAM — Sometimes in life, we need a little help from the experts.

The Community and Residential Services Authority, Family Matters Parent Training and Information Center, along with The Autism Program at CTF Illinois, teamed up to host a free workshop for parents with special needs children, in order to help guide them through the transition into adulthood.

Kaye Dent, an attorney with Frisse & Brewster Law Offices in Effingham, specializes in disability and elder law. Dent spoke at the University of Illinois Cooperative Extension Office in Effingham, about different avenues such as guardianship, powers of attorney, and other alternatives for families. About 20 people attended.

“If you have a child with special needs, once they turn 17, you need to start thinking about what's going to happen when they turn 18 and you are no longer legally in control of their life,” said Dent.

During this transition period, parents need to determine such things as whether their child needs a guardian, or if they need a powers of attorney. Also, parents should be networking with agencies such Family Matters, The Autism Program at CTF Illinois and Community and Residential Services Authority, among others.

“Find support that is relative to your child's needs and ask what are the other support they need while they are transitioning, and also possibly, an attorney,” said Dent. “Any disability is one that results in special needs and keeps the child from being able to make all of their own decisions.”

Or it might be a situation that “in the foreseeable future” the child may not be able to make their own decisions, she explained.

The workshop was given to help parents know that once a child reaches age 18, the parent is no longer the child's legal guardian.

Kristin Gharst, regional coordinator for Community and Residential Services Authority, said the workshop was a collaboration of other agencies that invited Dent, who specializes in disability and elder law.

Guardianship is a way to protect those who cannot take care of themselves, make informed decisions or handle financial assets. The attorney outlined what is guardianship, and other alternatives that may be chosen if the person is capable of making some, but not all, decisions on their own.

Dent had worked with the disabled in high school and in college. She went on to earn a law degree, about the same time that the Americans with Disabilities Act became law. Among her law experience included working with a non-profit group that served exclusively people with disabilities.

Today, she helps families plan for the future, in the legal sense, including estate planning and special needs laws.

Dent explained that there are different kinds of guardianship and different kinds of powers of attorney for estate and health care needs.

“A person can be disabled in some way, but still be perfectly competent to sign the powers of attorney,” said Dent. “If the person understands who their family is, who they are and if they are oriented to time, and they know who they trust to handle their business or health care decisions, they can probably sign powers of attorney.”

POA, or what is a written authorization to represent a person, is the less expensive way and it keeps the child involved thereby maintaining maximum independence. The child may have a POA of their health care or estate management.

Or, in a guardianship of their health care or estate management, which is appointed by the court after reviewing documents from physicians about the disabled person's needs.

Dent reminded the parents in the room that having power of attorney over their child's financial matters doesn't give them power over everything.

“If there's something not covered in the POA document, the agent doesn't have the power to do it,” said Dent. “It is a set of instructions from the person signing the document saying 'I'm appointing this person as my agent and they can do these things.'”

While a POA can be revoked when the person assigning is competent, in a guardianship appointed by the court, you have a duty to act, until the court tells you otherwise.

“If you seek a guardianship, it has to have a physician's report,” said Dent. “The physician has to give an opinion that the alleged disabled person needs a guardian. And they have to state specific reasons for the court.”

The workshop included information such as the POA is decided by the disabled person's functioning, not a diagnosis. It keeps the person's dignity and prepares them for the most independence. Guardianship should be as narrowly tailored as possible.

Dent said while legal fees can add up, there are assistance agencies for civil matters, such as Land of Lincoln Legal Assistance Foundation, and also local attorneys that provide pro bono services in some qualifying cases.

“There are ways around the expense, if you qualify financially,” said Dent. “Nobody should think there is a financial barrier for guardianship, if they need it.”

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Teaching parents about guardianship of disabled children