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Couple: Competent care difficult to find

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Shannon Rogina was diagnosed with tubar sclerosis when she was a baby, which caused multiple tumors to form on her brain leaving her unable to speak or walk. Her parents, Mike and Brenda Rogina, with the help of a home health care company, have to tend to her every need. Scott Roberson / Daily Journal
Shannon Rogina was diagnosed with tubar sclerosis when she was a baby, which caused multiple tumors to form on her brain leaving her unable to speak or walk. Her parents, Mike and Brenda Rogina, with the help of a home health care company, have to tend to her every need. Scott Roberson / Daily Journal

The mother still shudders when she thinks of what could have happened.

For 30 years, Brenda Rogina’s top concern has been her daughter Shannon, who was diagnosed with tuberous sclerosis after she began having seizures as a baby. The disorder caused multiple tumors to form all over Shannon’s brain, which eventually took away her ability to walk and speak.

Now her parents, along with any help they can get, take care of her every need, feeding her, dressing her, moving her position every hour and knowing what all her sounds mean — from a happy laugh to a frustrated grumble.

Last year, Brenda and Mike Rogina wanted a short break — some time with their other daughter, their friends and each other. They planned a trip to a beach in Florida, an impossible task with Shannon’s wheelchair and need for a rigid schedule.

They asked their home care company to schedule enough hours of care so they could take their weeklong trip. That’s when their nightmare began.

They came home to find a stranger’s underwear in their room, their collector car damaged and their daughter in distress.

The woman who was supposed to feed, clothe and bathe their daughter left in their car, drank their beer and had her boyfriend sleep with her in their bed.

She was fired by the agency but did not face criminal charges. The family left that home health care agency, but now they trust no one and soon will put surveillance cameras in their home, Mike Rogina said.

In May, Shannon had to have a tooth pulled that was damaged by her grinding her teeth. The issue was noticed after the couple returned from their trip, and Brenda Rogina is convinced being left alone was the cause.

Thinking of those days still nearly brings Brenda Rogina to tears. Anything could have happened. Shannon could have had a seizure or aspirated and not be here today.

Brenda Rogina is bitter about what happened, but partly because that wasn’t the first time a caregiver hurt their family. In the years since Shannon received a government waiver that made her eligible for in-home care, caregivers have stolen from them, fallen asleep on the job or simply not shown up.

Their most recent home health care agency, Individual Support Services, sent one caregiver to their home with a theft conviction and another who was convicted of a conversion charge, according to police reports and court records. The company would not comment.

Under state law, a person is prohibited from being a home health aide if they have been convicted of rape, criminal deviate conduct, exploitation of an adult, not reporting battery, neglect or exploitation of an adult, theft within 10 years or an equal level felony.

The Rogina family also said they have never been reimbursed for what was stolen or possessions that were damaged.

A woman who answered the phone at the Middletown-based home care company declined to comment.

Hard to get good help

Their story illustrates a need for families of children with special needs: good help. The Center Grove area family said that is harder to find than they expected.

“You’re talking about (caring for) someone who can’t do anything for themselves, who is nonverbal,” Brenda Rogina said.

After raising their family in rural Greene County, Brenda and Mike Rogina thought moving to the Indianapolis area would give them more resources for their daughter Shannon. They applied for a waiver that would give them 24/7 care for Shannon, so she would continue to get the care they give her — even after they are gone. They waited 13 years to be approved, and when their name finally got to the top of the waiting list, the program was ended.

So they applied for another waiver that would cover the cost of care at home. The approval came at just the right time. Mike Rogina had injured his back, and Brenda Rogina was feeling the effects of more than 20 years of lifting and moving Shannon. They needed help.

Both are now in their 60s. Most days, Shannon needs to be lifted at least 25 times per day. If they run errands, that number increases to 40.

“We knew we were only going to get older and things were going to break down,” she said.

Brenda Rogina was mostly home when caregivers would come. They helped her lift Shannon and stayed with her while she made a quick trip to the store or to run other errands.

Every time someone new came, Brenda Rogina spent days training them.

She showed them everything they needed to learn about how to care for Shannon: what she eats and when, how to move her position every hour so she doesn’t get too stiff or a pressure sore, what music she likes, what she is trying to communicate with her different sounds and what her seizures look like and how to help her through them.

Some caregivers worked out. Others didn’t.

Mike Rogina remembers coming home to find a caregiver asleep while Shannon sat awake. He was furious.

They complained, they asked for new caregivers when someone didn’t work out, and they trained them all over again.

‘Sending a known thief’

In September 2012, they were assigned a new caregiver who seemed sweet and eager to learn. After two days of training, Brenda Rogina felt she was ready to leave Shannon alone at home with the caregiver. The family had a bag of video games a family member was planning to trade in to get an iPad, with a list of everything inside. She noticed the bags were lighter. Games were missing.

She didn’t want to believe it.

But no one else had been in the house, and she always locks the doors. The caregiver had to be the one who took them. They pleaded with her to bring them back before calling the police. She denied taking them.

A month later, Derrica Alexander, 26, Indianapolis, was arrested on a charge of theft by the sheriff’s office. Investigators confronted her with video of her selling the games she had taken, and she said she needed the money — about $90 — to buy school clothes for her son. She later pleaded guilty to theft and was sentenced to about six months in prison, according to court records.

Alexander had pleaded guilty to a theft charge in 2007 in Marion County and was sentenced to probation and home detention, according to the Marion County Prosecutor’s Office.

“They are sending a known thief into your home,” Brenda Rogina said.

The home health care agency has registered nurses, licensed practical nurses and home health aides, according to its website. Based on Shannon’s needs, she was given a home health aide. Under state law, home health aides must complete a competency evaluation program, be in good standing on the state aide registry and must receive continuing education totaling 12 hours per year, with at least eight hours in subjects including communication skills, infection control, appropriate and safe techniques for grooming and personal hygiene, safe transfer techniques and nutrition.

After the theft, the family decided to stay with the home health agency, which fired Alexander and told the family they would make it right, Mike Rogina said.

‘Just need a break’

One reason was the headache of switching nursing agencies, which they had gone through before, including after a company lost their paperwork and put them in danger of losing eligibility for the waiver program. But they also convinced themselves it wouldn’t — it couldn’t — happen again.

“We were probably too forgiving. That just had to be a fluke,” Mike Rogina said.

The next year, they decided to take a trip — just them, their other daughter and grandson and another couple. The whole family has gone on lots of trips together as a family, but with Shannon they are not relaxing, Brenda Rogina said.

Brenda Rogina remembers trying to find a place to change Shannon’s diaper during a trip to Las Vegas. They remember lots of sleepless nights in hotel rooms where Shannon was out of her typical routine and couldn’t sleep, and so they didn’t either.

Amusement parks are out of the question, due to the heat and food that Shannon can’t eat. And the beach is almost unbearable for her, with the sun in her eyes, the sand and the question of how to move her around.

“Sometimes you just need a break,” Mike Rogina said.

Brenda Rogina began planning the trip months in advance. She had every detail worked out, including who she thought was going to care for Shannon while she was gone. And then, just before they were set to leave, the company sent a new caregiver.

The change made Brenda Rogina nervous. She wanted someone who had experience with Shannon, someone who was trained and whom she could trust. They already had spent $2,000 booking the trip.

The caregiver seemed eager to learn and wanted to work as many hours as she could to make extra money. She offered to do extra tasks for them, including watering their plants and keeping up with the laundry. Brenda Rogina spent 18 hours training her in how to care for Shannon. And then she posted notes throughout the house, telling her how to run the washing machine, what each light switch controls and who to call if something were to happen to Shannon.

Problems mount

But something didn’t seem right to Mike Rogina. He just had a bad feeling. He asked a friend to come over and check on what was going on.

“I’m her voice. I’ve always told people ‘don’t mess with the family,’” he said.

Hours after the family left, Mike Rogina called to check in. They were in Alabama, and his friend told him there was a problem. The caregiver had left in their collector Camaro. He begged her not to go and said he didn’t know how to care for Shannon, but she left anyway.

Mike Rogina was furious but had to be controlled. He didn’t want his wife to panic and insist they drive home, which she would. They were almost there, had rented a condominium and couldn’t get a refund. He called the caregiver and said if she didn’t come back, he would report the car stolen.

But the problems didn’t end there. His friend also had seen the woman’s boyfriend leaving the home at 5 a.m., said the two had been sleeping in the couple’s bed and had been drinking beer. For the rest of the weekend, Mike Rogina had a relative come over and check on Shannon, and the following Monday, he called the agency and demanded a new caregiver.

The couple came home to find dirty clothing in their bedroom and their collector car had been damaged.

They called police and made a report. They also learned the caregiver earlier had been arrested on a charge of conversion, a misdemeanor, in Greenwood in 2011. She entered a pretrial diversion program, according to court records.

No charges were filed against the caregiver for what happened at the Rogina home.

Prosecutor Brad Cooper said Shannon was not left home alone, which was one of the factors presented to him when considering charges. He also said Shannon was not hurt and was asleep at the time.

Cooper made the decision not to file charges based on what was submitted to him, which included no evidence of a crime, he said. Police did not arrest the woman, and they would have if they had clear evidence she had committed a felony crime, he said.

He didn’t think theft had been committed when the woman took the family’s collector Camaro, since the state statute requires someone to intend to take the item permanently, he said.

“I understand there are people who are frustrated with that,” Cooper said. “But until I get evidence, I can’t file anything.”

‘Nerves are on edge’

The Roginas left the home care agency, which they said never reimbursed them for the theft or the damage to the car.

They were left wondering how well Shannon was cared for while they were gone. They don’t know if she was moved into new positions like she was supposed to be. They don’t know what kind of stress she was in.

For those reasons, and because they just don’t trust anyone anymore, Mike Rogina is installing surveillance cameras in the home. He will show them to new caregivers and let them know they are being watched, he said.

A year later, what happened is still hard for Brenda Rogina to talk about. She gets upset and then will have trouble sleeping.

She can’t put into words all the emotions she has about what was done to their family.

“The abuse, I don’t even feel like I have a heart,” Brenda Rogina said.

They changed to a new agency, fighting to keep the one caregiver they truly trust right now, who has been working with Shannon for more than a year.

Turnover among caregivers is common, they said.

“Your nerves are on edge. You’ve got good help, and then they are gone. I can’t even tell you what that’s like,” Brenda Rogina said.

Dealing with the system

Finding good home care is a struggle for special needs families, said Jerry Kiefer, the adult protective services investigator who oversees cases in Hancock, Johnson and Shelby counties.

“You have to be able to trust the people that you allow into your home to care for the most precious things in your life,” he said.

“There have been too many instances in the past where it was the case, it looked good and sounded good, but it went downhill.”

He has been involved in multiple cases where caregivers have stolen from families. Part of the problem is that families are often in a rush when selecting a caregiver and don’t have the time to research and look into the company as they would with other services. Once they get approval for care, they are already in need.

And with so many home health agencies, figuring out which is best is difficult, especially for many families who have no experience with the system, Kiefer said.

The agencies also sometimes don’t thoroughly check the backgrounds of the people they hire. With the home health care business booming as more people are in need of care, companies are under pressure to hire quickly and sometimes don’t check people out as well as they should, he said.

“Just because you are supposed to do it doesn’t mean it gets done or gets done properly,” he said.

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