Mom Squad

Single mothers are stepping up to take over care of their handicapped kids. If only the state would help them over more of the hurdles.

Less than two months ago, Stephen Bertrand said he didn't want to end up back behind bars.

But earlier this week, he was arrested and sent to the Pima County Jail after he was arrested for allegedly assaulting a mental-health worker at an apartment complex. He'd been placed there for the weekend by a local behavioral-health agency following an angry outburst at his family members.

Moments of uncontrolled anger are nothing new for Stephen, who suffers from the dual disabilities of deafness and a bipolar disorder that can manifest in violent episodes. He's been in and out of trouble for most of his 26 years and spent most of 2003 in isolation at Pima County Jail, with occasional brief trips to the Kino Hospital and the Arizona State Hospital for treatment of his mental disease.

Last year's legal problems stemmed from charges that he assaulted a jail officer after being arrested following a probation violation at a local group home that works with La Frontera, the nonprofit agency responsible for providing Stephen's care. (See "Seeking Asylum," July 24, 2003 and "Justice Delayed," Nov. 27, 2003.) He eventually pleaded guilty but insane and was released from the Arizona State Hospital earlier this year.

Stephen's latest arrest, on Monday, June 28, was just what his mother, Marcia Rocha, has feared would happen if Stephen wasn't under strict supervision. Since he came home to live with her in February, she's been unsuccessfully trying to work out an arrangement with La Frontera. She wants to be able to bill La Frontera for the services that a personal-care assistant would provide Stephen. She would take responsibility for getting him to appointments, ensure that he's taking his medication, get him to classes to earn his GED and help him develop a routine so that he can straighten out his life--the sort of assistance she believes La Frontera should be giving her son.

Before Stephen's release, La Frontera officials gave Marcia hope that they could work out a deal. She began tracking her hours and mileage for the first month that Stephen was back living with her. She helped him enroll in an aptitude program that got him thinking about learning how to do tax forms or becoming an electrician.

Marcia's efforts to step in and provide care mirrors efforts by other families who are trying to fill gaps left when their children are in the care of the state. They argue that they'll provide better care and, in many cases, save the state money. But while progress is being made with families of developmentally disabled individuals, the mental-health system has yet to embrace the idea.

As a result, Marcia's contract negotiations fell apart in March. Instead, La Frontera has offered Stephen monthly therapy sessions and said they could help him find an apartment, although the rent would eat up most of his monthly Social Security, leaving little for additional expenses.

When the deal with La Frontera collapsed, financial pressures pushed Marcia back into the workforce. She's now working for a couple of mental-health outfits to learn more about the system and how she can better deal with her own son. While she's been working during the day, Stephen--until his move to the apartment and subsequent arrest--had been sitting idly at home.

Marcia says she'd never seen her son show such a lack of motivation. He refused even to heat up a meal in the microwave oven.

"He's been institutionalized for so long that all of this has been done for him," Marcia says. "I'm not minimizing. I know he has to be accountable for himself and he needs to learn how to do this all on his own, but we can't just throw all of it at him at once."

Just last week, Rocha's attorney, David Bjorgaard, wrote to Eric Schindler, La Frontera's clinical director of adult services, warning prophetically that Stephen was likely to end up back in trouble if a new approach couldn't be found.

"My fear is that if Stephen were left to the responsibility of the case worker or others within the mental health system, they will continue to place too much responsibility upon Stephen, Stephen will go off his medications, become non-compliant, and then Stephen will be blamed for his failures and any acting out that may occur afterwards," Bjorgaard wrote. "At that point, if Stephen acts out in a manner that is in violation of the criminal law, there is a grave risk that he will have harmed someone and that he will end up in prison. The result would be completely unacceptable--and predictable if proactive steps are not taken now."

In a particularly ironic twist, Marcia has taken the steps to have her home approved for providing adult therapeutic care for someone with mental illness. The program would provide her with a minimum of $2,900 monthly to monitor someone with minimal behavioral health issues.

But in order to take on a client, she'd have to evict her own mentally ill son.

Instead, Marcia wants La Frontera to certify Stephen as qualified for adult foster care and allow her to provide care for him--a hurdle she's been unable to clear.

"Everything is in place," Marcia says. "Either my son moves out and they give me a referral as a client, or I have Stevie as my client."

La Frontera CEO Dan Ranieri didn't return phone calls seeking comment for this story.

While Marcia contends with the red tape that binds the state's behavioral health system, other local single moms are pioneering the idea of providing care to their handicapped kids. Unlike Stephen, whose mental illness puts him under the umbrella of the Arizona Department of Health Services, these mothers are working with the Department of Economic Security's Division of Developmental Disabilities.

Two years ago, Darlene Droboslavic broke new ground locally when she took charge of the treatment of her 23-year-old son, Micah, who suffers from mental retardation, mild cerebral palsy and a bipolar disorder.

Growing up, Micah sometimes acted out in violent episodes. In 1994, when Micah was 14, Darlene decided to put him in a group home in the hope that he'd get the care he needed. Over the next seven years, she watched as he moved between four different homes and three different agencies. By 2000, she realized he was being neglected, losing any sense of self-worth and becoming so medicated that he was in a wheelchair.

In the 25 months since Darlene took over his care, Micah is literally back on his feet. He's developed a social circle with other developmentally disabled friends who meet for good times like bowling dates. He works a magazine delivery route with his mom and even has a small business recycling old printer cartridges, with the proceeds--roughly $600 last year--going to four different nonprofit groups.

Darlene argues that putting the responsibility for care in the hands of family members rather than a group home that suffers frequent turnover means that developmentally disabled individuals are going to get continuity of care in a loving and supportive environment. She says her biggest initial challenge was persuading staff at the Division of Developmental Disabilities--which provides services to about 4,700 individuals who suffer from mental retardation, autism, epilepsy or cerebral palsy in Pima County--to allow her to do it. Currently, the vast majority of the people DDD serves live with family members and receive some sort of care at their homes, but about 350 live in privately run group homes, which generally have two to four residents.

According to Ron Barber, executive director of the local DDD office, one cause of all the red tape is the fact that the federal government only recently changed its rules to allow family members to take on the role of care-givers, thus allowing the state to follow suit.

Not only has Micah's health vastly improved, but the arrangement is saving the state money. In his last year in a group home, the state spent nearly $77,000 on Micah's care, according to Barber. That figure includes $66,000 to cover the cost of attendant care for Micah, as well as $4,088 for a program that he briefly attended. The agency paid out another $6,400 in costs related to his room and board at the group home.

In the upcoming year, Barber estimates that Darlene--who just recently persuaded the agency to increase the amount of hours she can be paid for by about $10,000 annually--will be eligible to receive as much as $41,074. In addition, she can tap as much as $8,250 for respite care, which allows her to take a break while someone else watches Micah. Finally, she no longer has to turn over 70 percent of Micah's Social Security benefits to the state, meaning she gets to keep an additional $4,740, for a total cost to the state of $54,064.

In total, the state is saving about $23,000 thanks to Darlene's decision--and, she points out, that doesn't include the cost associated with the hospitalizations that Micah used to go through, or the decrease in his prescription medication that has occurred since she took over his care.

"We're saving state and federal government huge amounts of money, and we're improving the quality of life of these individuals tremendously," says Darlene.

But here's the wrinkle: Darlene's considered an independent contractor--which means she's on the hook for the taxes, including all of her Social Security taxes, which are typically split between employer and employee in a traditional job.

Darlene says that can be a real financial pinch--especially when she compares it to the situation of foster families caring for the developmentally disabled, whose compensation is considered tax-exempt.

Barber says that's a federal issue that needs to be decided by the IRS, not his agency.

"Who couldn't say that wouldn't be a good idea?" Barber says. "I think it's reasonable to go down that road. But as I understand the federal Internal Revenue Service rules, they only give that kind of tax exemption to people who have licensed foster homes. I don't think it's possible for us at the state level to make that determination without some change or some expansion of the federal IRS policy."

This week, Dee Roberto will be bringing her 34-year-old autistic son, Eric Raley, home from the group facility he's now living in.

On a recent Saturday afternoon, Eric, who has the mental capacity of a 3-year-old, alternately paced or sat rocking on a couch while he waited for his mother to cook him some hamburgers, rice and vegetables. Although his vocabulary is limited, he communicates with his mom through some basic sign language, telling her that he's hungry and that he wants second and even third helpings.

About 10 years ago, Dee put Eric in the group home. But her son has never been far from her thoughts.

"It never leaves you," Dee says. "Even if I have a diversion of some kind, my mind is always with Eric, even when he's in the group home."

Dee thought she was making the right decision when she put Eric into the group home. She was worried that if she were Eric's sole caretaker, there would be no one who could take care of him if something should happen to her.

She typically brings him home on weekends, and Eric spends six hours a day Monday through Friday at Project PPEP, which provides a classroom environment and field trips for the developmentally disabled.

But Dee has become increasingly concerned that Eric has been over-medicated in his group home. He's been suffering dizzy spells and vomiting episodes. And she's seen him lose skills that she worked hard to teach him. For example, because another resident of the group home was flushing toilet paper down the pipes, managers at the group home put toilet paper into a locked cabinet. As a result, Eric has lost his toilet-training skills.

So Dee has decided to cut back to a part-time job with the city and take on Eric's care.

Like Dee, she'll be saving the state money. Over the last year, the state has paid $82,324 to care for Eric. That includes $49,937 for his care at his group home, another $6,903 for room and board and $25,484 to cover the costs of Eric's participation in Project PPEP.

Under the new arrangement, Dee will be eligible to receive almost $24,000 for caring for Eric. She'll also keep $4,740 of Eric's Social Security benefits that are now kicked back to the state. She'll be eligible for as much as $8,250 for respite care. Finally, Eric will continue to attend Project PPEP, taking the total state cost to roughly $63,000--a savings of more than $19,000 a year.

Dee is grateful that the new program gives her a chance to take care of her son, but, like Darlene, she's concerned that she'll be considered an independent contractor for the $23,916 that she'll get from the state.

In addition, she's losing her health care coverage through the city. She'll be eligible for coverage through COBRA for 18 months, but that will cost her $287 a month.

"I'll have to work part-time just to pay for taxes and insurance," Dee says.

Like Darlene, Dee thinks the state and federal government should give her a tax break, especially since she's saving the state money with the arrangement. But Barber tells her the same thing he has told Darlene: Until the IRS changes its policy, the state has to treat her as an independent contractor.

But Barber suggests that such a change could happen.

"I think it could come," Barber says. "These are early days for this whole idea that family members would be able to get compensated."

He's hopeful that more parents will take advantage of the new option that's now available to them.

"It's certainly going to be available more to parents who want to take that kind of approach," says Barber.

That's good news to Darlene, but she hopes the system will become easier to use in the future.

"Why should it be so complicated?" she asks. "We have a stake in this person, we're willing to give up our careers and we're willing to save them money."

And, in these cases, they provide the type of care these kids aren't going to find in a group home. As Darlene puts it: "Love is the strongest medicine."

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