One mom's struggle to keep her son alive in the state's care highlights the challenges of supporting the developmentally disabled

She was in the middle of the most harrowing, chaotic 48 hours of a very bad year.

And things were about to get worse.

BJ Bolender didn't lose track of her son. The state of Arizona did. And he's no little kid who wandered off in a storm. He's a 28-year-old man who, on the morning of July 31, was dumped by his state-appointed caretaker at Gompers Center, his adult day program, and left without anyplace to go.

Drew is developmentally disabled, which can mean a lot of things, according to the official definition. And it can mean a lot of things when it comes to Drew. At times, he acts as mature as a boy in his late teens, playing video games and talking about girls. He's fun to be around and offers opinions on everything from his favorite band (Metallica) to his favorite baseball team (the Diamondbacks). He favors baggy T-shirts and backwards baseball caps. He has a girlfriend whom he describes as a "bombshell," and two little nieces he adores. He is happiest when he can play with his Japanese Yu-Gi-Oh! trading cards or spend hours getting lost in a PlayStation game.

Other times, he's like a 5-year-old. Drew has hydrocephalus — commonly known as "water on the brain" — and it's caused learning delays, a severe seizure disorder, and behavior disorders such as depression and severe attention deficit disorder.

His mother has spent his lifetime dealing with Drew-related crises, but before that day last July, she'd never lost contact with him.

Drew is not technically mentally retarded, but he is developmentally disabled and he does require almost constant supervision. He attended high school, and he graduated with an actual diploma, not the certificate of attendance many developmentally delayed kids receive.

Drew can have a conversation — using the word metaphor correctly — and use a computer. But his condition is deteriorating. He's suffered repeated brain trauma from surgeries and seizures.

In certain situations, Drew reacts as a much younger person would. When he goes into the bathroom to brush his teeth, he forgets what he was going to do by the time he gets there.

"One moment, he can be like a 4- or 5-year-old, getting really angry and having a temper tantrum. But then you can see him acting like a 13- or 14-year-old boy — farting on purpose, things like that. He loves PlayStation, wrestling, and all that stuff," says his mom. "Once in a while, he is almost age-appropriate."

He is capable of learning and growing — rather than plateauing — but because he is developmentally delayed, his growth takes longer than normal.

Drew Bolender is tough to care for. And he lives in a state that is not known for providing top-notch services for the developmentally disabled.

To be sure, some hearts are in the right place. For instance, in 2006, the Arizona Legislature voted almost unanimously to change the legal designation of people with an IQ below 70 from mentally retarded to cognitively disabled.

But for all the politically correct talk in Arizona, Drew's case — and other cases of poor care in group homes, some of which have led to preventable deaths — makes it painfully clear that the state isn't walking the walk.

Right now, the state House of Representatives is considering legislation that would further limit the regulation of group homes by removing DDD's authority to monitor such facilities. Group home provider agencies want to get accredited by a national organization and, thus, skip any inspections for up to five years. The measure slipped through the House Government Affairs Committee (instead of Health and Human Services, where it likely would have died) and could be before the full House by next week.

On the financial front, Rep. Pete Hershberger, a Tucson Republican, confirms that critical services for the developmentally disabled are on the chopping block and the Department of Economic Security will likely be asked to cut 10 percent of its bare-bones budget.

Things already are pretty bad for the Bolender family.

Since moving to Arizona three years ago, BJ Bolender says her son has lived in homes where his caretakers smoked marijuana on the job, stole his controlled-substance medication, and ignored his medical protocols, including those designed to keep him from having life-threatening seizures.

In late April of last year, BJ took him out of a group home because she feared for his safety, and since that time, Arizona's Division of Developmental Disabilities has failed to find Drew a new permanent home, though, as of press time, there were 57 licensed group homes in Maricopa County that did not house any clients.

For this story, New Times spent time over the span of seven months interviewing the Bolender family, becoming familiar with Drew's current situation and his family history. None of Drew's past or present providers would speak on the record because of confidentiality laws. The state similarly would not comment specifically on Drew's situation. The Bolenders provided hundreds of e-mails, letters, photographs, and access to a log in which all Drew's providers and his mother recorded daily incidents and behaviors. In addition, New Times spent four hours with Drew on two separate occasions. State officials, representatives for the Center for Disability Law, and disability advocates were interviewed as well. DDD would not disclose any incident reports relating to Drew or any of his providers.

According to federal and state law, Drew has the right to have "care for personal needs provided . . . by a direct-care staff person." He also has the right to a safe and clean physical environment, free access to his property, the right to associate with whomever he chooses, and to go to the church he chooses. He is guaranteed the "least-restrictive" living environment possible.

Drew's combination of behavioral, medical, and developmental disabilities makes him hard to place, but there's no caveat in the law that says, "Unless client is difficult." Drew is easily irritated by noise, and if he's not kept busy, he gets bored and can get into trouble. When backed into a corner or physically confronted, Drew will fight, though his remorse afterward is well documented.

Perhaps because he's difficult and because his seizures are life threatening, DDD consistently pressures Bolender to take Drew into her home. As a single mother who rents her home, lives with a roommate to make ends meet, and works a full-time job, she simply cannot do that. She says that even when Drew's dad was around (he died in 2003), Drew's care was nearly impossible.

"It took two college-educated adults to take care of him," she says. "And even then, there was never enough time."

Bolender isn't asking DDD for a miracle. She's just asking the agency to place her son somewhere he will be safe. Somewhere the staff will care that his favorite superhero is Spider-Man.

Bolender doesn't understand why DDD has not found a place for her son. It's been almost a year since he left his last permanent group home. Drew has federal money he can use and he is also eligible for state assistance. She says she isn't asking for anything more than for the state to do its job: provide a safe, appropriate residential setting for her son, where he can live an independent life.

She doesn't plan to give up.

"We've worked too hard to keep this kid alive," she says. "We're not going to let the state of Arizona kill him."

In matters of social welfare, attention typically turns to the very young or the very old. The 11,400 adults served by Arizona's Division of Developmental Disabilities are often forgotten in the middle. New Times' examination of DDD reveals an agency rife with administrative, training, and budget problems.

Consider:

• Group homes for developmentally disabled adults are licensed through the state, but the entities that run the group homes are, by and large, left to their own devices. (That would intensify if the measure now before the House becomes law.)

• Arizona has an extremely high turnover of group home staff, and low wages lead to a challenge in drawing and retaining competent staffs.

• The state of Arizona has minimal requirements for group home employees. Employees do not need experience working with a medically fragile, challenging population.

• There are no official "quality of life" or supervision definitions. Therefore, clients often are not given the care specified in their state service plans.

• The turnover for support coordinators at the Division of Developmental Disabilities is 27 percent. The client-to-coordinator ratio is 40 to 1.