One mom's struggle to keep her son alive in the state's care highlights the challenges of supporting the developmentally disabled
A late-July monsoon beat down on the roof of BJ Bolender's Honda as she drove the streets of west Phoenix, desperate to find her son Drew. He was at a house somewhere in Laveen, but she'd never been there before. Roads were flooding, and she could see barely five feet in front of her. But she couldn't stop or turn around.
Bolender was racing the clock, racing her son's neurological system. If she didn't get to Drew in time, he could die.
She was in the middle of the most harrowing, chaotic 48 hours of a very bad year.
Arizona Division of Developmental Disabilities
And things were about to get worse.
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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.
• 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.
When faced with these kinds of problems, it's no wonder family members like Cameron Bolender, Drew's brother, worry.
"I'm not expecting DDD to be miracle workers," he says. "But they just dump him off at these places, and I have no faith that they're screening these people and determining if these are people qualified to provide this care."
Drew Bolender and Lacey Frye, his caregiver for about three weeks last July, never got along. Frye was a single mother with a 3-year-old and another client already in her home. Frye ran the Peoria home herself, though her fiancé often stopped by to help her out. Drew and her son fought constantly, and Frye was overwhelmed by Drew's tantrums and aggressive tendencies.
On the morning of July 31, Drew and Frye had an argument. It was a bad one that, according to what BJ Bolender knows, ended with Drew grabbing Frye's necklace and choking her.
Frye decided Drew couldn't stay. She called his support coordinator, reported the incident, and had her fiancé take Drew to his day program.
Frye says she cannot comment on any of her past or present clients and would not talk to New Times for this story.
Drew was never allowed to return to Frye's house.
His mother says she didn't know what happened until a staff member at the day center called to ask about it.
And she had no idea what would happen to her son until 5:30 that afternoon when she got an e-mail telling her Drew was being taken to a temporary home in Buckeye. When she called the number for the home, no one answered.
An hour later, she received another e-mail. It said there was a change of plans: Drew was going to a different temporary home in Laveen.
"At this point, no one seems to know where my son is," she says. "I'm really on edge."
Just after 7 p.m., as a monsoon was brewing, Bolender got a phone call from a social worker she'd never met, from a private agency she'd never heard of.
"Hi, I picked up your son and I have him with the woman who's going to take care of him," said the social worker. "Can you tell us if he has any medical conditions we should be aware of?"
The social worker had no paperwork for Drew and had none of his medications with her. Drew takes seven types of medication daily just to maintain his health. If Drew has a seizure, it won't stop without treatment. He needs constant access to emergency medication that can stop his seizures and save his life.
"I'll be right there," Bolender told her. "Don't leave."
She grabbed the few extra pills she had for Drew at her house and drove quickly through the storm, praying her son wouldn't have a seizure before she got to him, praying that she would reach him before the roads flooded.
When she arrived at the house, the social worker was gone. Drew was alone with his new caretaker, who was "very nice" but did not speak English well enough to read her son's pill bottles, Bolender says.
For two hours, Bolender wrote instructions, explained Drew's disorder, and told the caretaker what to do if he had a seizure. Then she left to go home.
She hadn't driven two miles down the road before her cell phone rang.
"He is seizing. He is seizing," the caretaker screamed into the phone.
By the time Bolender returned to the house, her son had been in full seizure for six minutes. During a seizure, Drew loses consciousness and has difficulty breathing — sometimes, he even stops. His muscles contract and relax violently and he is danger of biting his cheek or tongue.
The caretaker had not called 911. When, following Bolender's instructions, she got a dispatcher on the phone, she panicked.
"She was so upset she just started talking in Korean. She couldn't tell them where she lived or why they needed to come," says Bolender. "As I'm holding Drew down, she held the phone up to me so I could tell them."
By the time the ambulance arrived, Drew had been seizing for half an hour.
Precious minutes were lost that night because Bolender didn't have access to Drew's emergency medication.
"When Drew has a seizure, there are only three outcomes," Bolender says. "He could be fine, he could suffer brain damage, or he could die."
Drew survived but stayed in the hospital for three days.
That night, his exhausted 56-year-old mother e-mailed a family friend. "Long night in ER," she wrote. "Big shit hitting big fans all over the place today. No sleep for 37 hours in a row now."
That was in July. It's now the end of February.
"We are trapped after 10 months of this crap," says Bolender. "And we still don't have a permanent placement for Drew."
Drew's life has been hard since he was born, on August 5, 1979, in Dubuque, Iowa. Though BJ's pregnancy with her second child was normal, it was obvious from the moment Drew was born that something was wrong.
After Drew was born, a doctor pulled his father aside and held a light up to the baby's head. It shone through so strongly that the doctor initially thought Drew didn't have a brain. When CT scans came back later, the doctor put them on a light box to show BJ.
"Oh, I get it. The light parts [on the scan] are his brain and the dark parts are the water," she said to the doctor.
But it was the other way around.
"That was when it hit me," she says. "You could not see any brain at all."
Drew was transferred to the hospital at the University of Iowa in Iowa City that night.
If she and her husband, Daryl, wanted the baby to have any hope for survival, Drew would need a serious operation, and he would need it by the time he was a week old. Doctors would have to drain the fluid from his skull, or the buildup would kill him.
Drew had no recognizable brain structures: No right side, no left side, no corpus calossum — the fissure that connects the brain's lobes. The doctors would install a system of shunts in his brain to remove the excess spinal fluid and recirculate it through the body.
"Visualize lumpy, gray Jell-O," the doctor told Bolender. "We're going to stick a soda straw in and hope we stick it in the right place."
Though it was obvious Drew needed the surgery right away, the doctor advised against it.
"They said it would lead us to hope for the future and there is no hope for the future," Bolender says.
She wondered what would happen if they didn't go forward with the surgery.
Drew's head would swell, larger and larger. It would reach the size of a watermelon. He would be transferred to a nursing home, where IVs would keep him alive until his heart couldn't handle the strain. And then he would die.
"I said [to the doctor], 'There's no question. He's having the surgery,'" says Bolender. "I asked him to tell me again all the things he wouldn't be able to do."
Never smile, never have an emotion, never speak, never breast feed.
"I said, 'Wait a minute. Did you just say he won't be able to breast feed?' They said, 'Yes.' I said, 'Do you know that I've been nursing him for a whole week?'" she recalls. "That was the first moment we said to ourselves, 'Doctors don't know everything.'"
They went ahead with the surgery.
That was BJ's first lesson in a crash course on mothering a disabled child. She got a lot more instruction that year. Drew had four operations before his first birthday. When Drew came home, the family still didn't know what to expect.
"When we took him home from the hospital, we assumed we were taking him home to die," she says.
But Drew lived. Drew's older brother, Cameron, learned to help with the baby, and later, the Bolenders had another son, John.
Therapists continued to tell the Bolenders things Drew would never do.
"We were told just before he was 4 that he would never walk, and one month later, he was toilet-trained and [walking]," she says.
From the time Drew was 5 until he turned 10, the Bolenders visited three bankruptcy lawyers. Those trips were a disheartening financial wake-up call for BJ, a teacher, and Daryl, a social worker.
"We were advised that we were the kind of family that would have to [declare bankruptcy] every seven years. We just couldn't pay our bills," she says. "They were telling us they knew Drew would have lifelong needs and we were not likely to come into money to take care of it. Realistically, it's going to happen over and over."
Eventually, the couple divorced. Drew kept growing and earned his high school diploma, something his mom is very proud of.
When Drew was 19, he moved into his first group home in Iowa City because Daryl's new wife didn't want him at home and BJ couldn't support him on her own. Drew was happy in his group home until five years ago, when Daryl died after a massive heart attack.
Drew finds it difficult to talk about his dad. It upsets him too much. On his personal Web site (designed by Drew), he's written a touching tribute to his father: "My dad and I were really good together. We were connected in a way that we were like Super Glue."
Shortly after Daryl's death, BJ was in a car accident that put her in the hospital.
She realized that if she were to die, Drew would be alone in the Iowa system with no family. Cameron wanted his mother and brother to move to Arizona, where he'd started a family. Bolender knew they had to go, so she packed Drew into her $600 car and headed west.
But she was worried that services for Drew would not be as good as they'd been in Iowa.
"What I found made me sick," she says.
In some ways, Drew has been lucky Others have died in DDD's care.
In 2001, 26-year-old Iliana Solomon suffered a seizure and drowned in her group home bathtub when her attendant left her alone to go smoke a cigarette. The attendant, Catherine Cash, had been hired, fired, and rehired by the agency several times over a 10-year span.
In August 2001, according to court documents, Cash was put on probation for calling a client a "spoiled brat," for forcing clients to sit on their hands as punishment, and for talking about the sexual orientation of her coworkers.
In November 2001, Iliana Solomon drowned on her watch.
According to court documents, Solomon suffered from severe mental retardation. She was also deaf and had a seizure disorder. She needed hourly reminders to use the bathroom, and required assistance in pulling her pants down to do so.
On the night she died, Cash ran a bath for her, helped her into it, and then left her unsupervised for 10 to 15 minutes. When Cash came back, Iliana was underwater and unresponsive. Instead of pulling her out, immediately starting CPR, and calling 911, Cash called her supervisor. It was only after the supervisor told her to call 911 that Cash took steps to save Solomon's life.
She died at the hospital.
Solomon's parents had not been told by the group home provider about Cash's past disciplinary problems. The Solomons sued the provider, the state, DDD, and its parent agency, the Department of Economic Security.
In 2004, a jury awarded them $45.5 million after finding the defendants guilty of abuse and neglect, wrongful death, negligent hiring, training and supervision, negligent misrepresentation, and fraud.
The state of Arizona is appealing. DDD and the state of Arizona will not comment on pending litigation or say whether Solomon's death prompted policy change.
More recently, court documents obtained by New Times detail the gruesome deaths of two men in Arizona group homes in 2007.
One of the men suffered from "moderate mental retardation," uncontrolled movements, obsessive-compulsive disorder, and seizures. He required one-on-one supervision and was never to walk without assistance. Group home staffers were supposed to make sure he wore a helmet, wore a gait belt to help prevent back injury, and used a walker at all times when trying to walk. The man had the mental function of a 3-year-old.
In July 2007, he attempted to get up from bed one night and fell, hitting his head in the hallway outside his bedroom. A group home employee heard the fall and helped him to the bathroom, asking if he was all right.
"Fall," was his reply. The employee put him back to bed.
The next morning, the man did not wake up. The first thing the employee saw when she entered the room was blood. Instead of immediately calling 911, the employee called the home's on-call service to "verify that [name redacted] was not playing a game and pretending to be asleep."
After 911 was called, the man was taken to the hospital. He had suffered several hematomas, a fractured skull, and a brain hemorrhage. He died a few days later.
In June, a 51-year-old man with "several cognitive impairments" choked to death on a burrito in his group home in the presence of his attendant. The man was unable to speak, required constant one-on-one attention, and had a history of choking on food.
The day he died, his food had not been properly cut into small pieces. During his meal, according to the police report, he got up and went to the bathroom, where he "urinated all over himself." He was walking unsteadily, so his attendant helped him back to the table. He then defecated in his pants and began to gurgle. After his attendant realized he was choking, she hit him on the back to dislodge the food but did not administer the Heimlich maneuver.
He died on the scene.
Craig Knapp, the Phoenix personal-injury lawyer handling the three cases, says the problem stems from inadequate training, which has been systemically ignored by DDD. Without specific state-mandated training standards, more people will die, Knapp says.
"I've seen staff who are literally hired off being landscapers. I know one case where he was a landscaper and his next job was working in a group home," he says. "No experience at all with developmentally disabled people, straight from pushing a lawn mower."
For the Bolenders, life in Arizona was difficult from the start. Drew's health was declining steadily, and the family had to wait three months just to qualify in Arizona's system.
It was a tough three months — Drew endured nine trips to the ER and one neurosurgery. On top of that, BJ was footing the $1,000-a-month bill for his medicine.
After nine months, Drew entered his first group home.
There were problems, many of which stemmed from an unqualified staff. His group home caretakers did not follow Drew's behavior-treatment plan, devised by his doctors. It's a simple plan — essentially charting behavior with rewards for consistent good behavior — but the group home claimed it didn't have the training to follow it.
His brother Cameron, who owns a catering business and now shares guardianship of Drew with his mother, says it was hard to get the staff of the home to view Drew as a person.
"We had a behavior-treatment plan in place, which is something the doctors say has to be in place to manage his behavior," he says. "It's the same as if you were a diabetic and you need insulin, and they just would not do it. It was always incumbent on us."
The Bolenders began to feel as though asking DDD for help was useless.
Cameron recalls dropping Drew off at the group home one evening around 9:30. The staff came to the door in what Cameron describes as a "cloud of marijuana smoke." Unsure what to do, he dropped Drew off and called their mom. They decided to call DDD's emergency after-hours number as well as the police. By the time the police showed up two hours later, the group home's shift of employees had changed.
"The DDD on-call person said it would trigger an investigation. They asked me if I wanted to leave Drew there that night. I said, 'Drew is asleep. Let him sleep until morning,'" says BJ Bolender. "I picked him up the next morning, and he never went back there."
She says she later found out there was no investigation because the police report, written hours after the incident, said that the officer didn't find a problem. It infuriates Cameron that DDD never carried out an investigation. DDD and group home providers say they cannot disclose information about investigations or talk about clients because of privacy laws.
After that, Drew was moved to a different home. Again, Bolender says, the behavior-treatment plan wasn't followed, but even more alarming, Drew's seizure protocol was not followed.
The home didn't want to keep his emergency medications in the house, even though they're part of Drew's service-plan mandate. The law does not prohibit their presence in a group home setting.
"I pointed out to them that Drew cannot safely stay in your home or anywhere that he doesn't have his required protocol medicines," she says.
Drew can't even ride in a car if the driver doesn't have the required rescue medication on hand. Bolender had to involve the Center for Disability Law and get a written letter from Drew's neurologist to state they were necessary.
The Center for Disability Law declined to comment on the Bolender case.
"I understand that Drew's continued use of these as-needed medications has come into question," reads a letter from his doctor. "Please understand that the use of these medications is not optional for Drew and they have been prescribed as part of his medical regimen. To withhold them for any reason would be in violation of his safety and overall health and comfort."
Even then, Cameron says, the group home did not follow Drew's protocol.
"Three times in a row, he has seizures and they failed to follow the protocol, resulting in him having to go to the emergency room for seizures that could have been managed," says Cameron. "It was always, 'We couldn't do it because it was too hectic.' It's too hectic to get my brother his life-or-death seizure medication? Because every time he has a seizure, he could die. It's a horrifying experience for him."
Cameron says that every time he and Bolender asked DDD for help, they were told to take him into their own homes if they didn't like the group home.
"Why didn't they do anything? It's their responsibility. We were begging them to do something, and they turn around to us and cop the same line: 'Oh, if you think he's in a place that's endangering him, why don't you take him out of that place? Don't you think you're somehow endangering him by not taking him out of the place?' What kind of sick government Catch-22 is that?" asks Cameron. "I don't understand the logic. It's like they're saying it's my job to make sure he's taken care of, but you're neglecting him if you let me do my job."
No one at the state level would admit in interviews for this story that a lack of training is a problem. The Governor's Council on Developmental Disabilities recognized the issue in its 2007-2011 five-year plan:
"By 2008, the state of Arizona will develop and implement a standard training curriculum for direct support professionals serving people with developmental disabilities, which seeks to further professionalize the field of direct support."
That hasn't happened.
Part of the problem may be that DDD focuses on keeping developmentally disabled adults in the family's home and considers group home placement a "last resort," according to an e-mail DES spokeswoman Liz Barker sent to New Times.
Brian Abery, a faculty member at the University of Minnesota's Research and Training Center on Community Living and an expert on self-determination and social inclusion for people with disabilities, disagrees with that approach.
Abery's research shows that self-determination is one of the top factors to consider when talking about a developmental disabled person's quality of life.
For an adult, part of self-determination means choosing to move out of the family's home and into the community.
"It's inherently human to want to be socially included and live your life the way you want to, not the way other people expect you to," he says.
Since the 1980s, states have moved from caring for developmentally disabled people in large institutional settings to smaller, privately run group homes because smaller homes provide the least-restrictive environment for disabled people. The move also shifted the financial burden for maintaining homes from the state to the private group home providers.
"If you do it the wrong way, it's still an institution," says Abery. "There are homes where you walk in, and you can tell the home is owned and operated by the staff, and the people with disabilities feel like visitors. There's nothing personal. The furniture is institutional and they don't have a place to put personal things. A dorm would have a more home feeling."
No state is perfect, but some have made the transition better than others. Vermont, New Hampshire and Minnesota are often mentioned as states with good residential services.
Arizona is not mentioned on that list.
State Representative Pete Hershberger, a Republican from Tucson and a member of the House Human Services committee, says low wages for line staff are a huge problem. But he's not sure the Legislature is prepared to do anything about it, nor is prepared to require higher training standards.
The state requirements to work in a group home are minimal. To be hired, a person must be at least 18 years old, become CPR and first aid certified, and pass a fingerprint and background check. Provider agencies could decide to hold their personal employees to a higher standard, but most don't.
Curtis Becker, a spokesman for the National Disability Rights Network, a non-profit protection and advocacy group, says no state does it perfectly — it's hard to transition a population once cared for by nurses to the care of minimum wage workers — but agrees that some states do it better than others. He says training has to be a focus.
DDD leaves training up to individual group home providers, so it is not consistent statewide. While agencies must prove that they've performed some training on client care, DDD does not mandate what that training is or how that training is done.
In some states, such as Minnesota, client needs are handled on a county basis. The state has won awards for its computer-based training programs. Of the 8,000 Minnesotans who receive state care, 82 percent reported in a 2000 state evaluation of Minnesota's home and community-based services that they liked where they live.
Though the state does face problems (low wages being a major one all over the country), more Minnesotans live in small group homes than the national average and they are generally very satisfied with their arrangements.
Turnover for group home staff is high because pay is so low. Arizona doesn't keep numbers for agency turnover, but most group homes nationwide have complete staff turnover every six to nine months. The starting wage at Arizona Training and Evaluation center, one of the agencies that provided services for Drew, is only $7.35 an hour. According to DDD's rate book, the average pay in 2004 for a personal and home care person was $8.04 an hour. At the high end, community service managers were making almost $20 an hour in 2004.
Because turnover is also high at DDD, it's difficult for the state agency to act as a watchdog when it is overburdened and underpaid employees rotate in and out.
If a client has a problem with DDD, there's not a lot of recourse. Federal law mandates that each state have an advocacy and protection group in place to protect developmentally and behaviorally disabled people. In Arizona, that agency is the Center for Disability Law, an organization whose 27 staff members and six lawyers serve the entire state.
CDL spokeswoman Natalie Franklin says the center fields 80 to 100 requests for assistance a week. Most people who call do not get one-on-one representation. The center usually can only offer information on how to be a self-advocate and where to file a complaint.
Knowing where to complain is a big first step. In Arizona, the system is complicated, with multiple agencies having a hand in licensing providers and offering care. There are three agencies besides DDD and its parent DES that handle complaints of abuse and licensing problems.
"It's a big system. It serves a lot of people and is spread out across a big state. Is it perfect? I don't think so. Do we try really hard? I know we do," says DDD assistant director Barbara Brent. "Do we have to stay forever vigilant? Absolutely."
Because there are minimal state requirements for providers and not enough DDD employees to do frequent quality-assurance checks (DDD does them once every six months — in many cases, a group home's entire staff turns over about that frequently), a lot of responsibility for staying "forever vigilant" falls to advocacy groups such as Arc of Arizona.
Though Ginger Pottenger, president of the board at Arc, says her group works closely with DDD and believes the agency is trying to do its best, Arizona doesn't do everything it could.
"We have a tendency in this state not to look at other models in other states and see what they're doing," she says. "You need to look at ways to maximize the money that's out there and put it at the level that directly affects the person. We don't tend to do that. We tend to put the money more at administrative levels and above."
The Bolenders removed Drew from his last permanent group home in April 2007. BJ was afraid of what would happen if Drew's seizure protocol were not followed again, and she'd personally had problems with some of the staff regarding Drew's doctor's appointments and medications. She also says she noticed she was being asked to fill some of Drew's controlled-substance medications, some of which are amphetamine-based, more frequently than she should have.
At press time, Drew still was not in a permanent residence. He stayed with his mom for six days before he went into his first respite home. Bolender works full time teaching classes and conducting training about disability awareness, advocacy, and assistive technology for the Arizona Center for the Blind and Visually Impaired. She can't afford to cut her hours. Those six days with Drew completely wore her out.
"On the fourth day, I was going nuts," says Bolender. "I was not sleeping and eating and I was up through the night."
Drew has moved nine times since May. Cameron has seen the toll it's taken on his mother.
"Her weekly hourly investment and the days off of work that she's putting into someone who has a caseworker whose job it is to take care of him are ridiculous," Cameron says. "She doesn't get to be his mom; she has to be his surrogate caseworker because she can't rely on DDD."
Drew's caseworker, or support coordinator (a DDD term), is responsible for advocating for Drew, facilitating his residential placements and other supports, mediating problems that occur between his family and his providers, and monitoring his service plan to make sure it's implemented and that Drew is making progress.
Bolender fills a lot of the gaps that Drew's overloaded coordinator cannot.
Around 3 on a late September afternoon, Bolender pulled frantically into her driveway. She was planning to take Drew out to dinner and had to leave work early in order to do it. She'd been up since 6 a.m., trying to squeeze more hours out of her day.
When she arrived at Drew's home, the staff member on duty was out front washing his car while three disabled clients were unsupervised in the house. The group home's owner was out back smoking a cigarette. He came in when he saw Drew's mom.
The floor of this home was all tile and the walls a faded pink. Nails stuck out of the wall near the door. Someone walking by could easily get scraped or poked. The backyard was not landscaped. Technically, you could call it a "family home," but really, it felt like an institution. One client lay on her bed, staring at the ceiling. Drew was in his bedroom, sorting cards alone.
It was not the kind of home Drew wants to be in. Later that day, sitting next to his mom at Burger King, eating a cheeseburger combo meal, Drew talked about where he'd like to live. He couldn't answer the open-ended question at first, but when offered either/or prompts, Drew said he'd like to live in a house, in the master bedroom with "the biggest front yard and the biggest backyard you've ever seen. With a pool."
He'd like to have pets and he'd like to live with other people who do not have disabilities.
When asked how many places he'd lived in the past few months, he responded, "Like, 50."
It's the little things that add up to major frustration for Drew. For example, Drew is allowed to have a goatee. He likes his goatee; it makes him look like a grownup. But in that home, his goatee was repeatedly shaved off.
As part of Drew's service plan, group home staff members, the staff at his day program, and his mother kept a journal that they shared. In it, they recorded Drew's behaviors and each day's activities. The staff at that particular home made no secret of their attitude toward Drew — and his mother — in the journal.
In an entry dated October 1, 2007, the CEO of the small company wrote: "Very sorry mother is so ungrateful and picky. Very sorry this staff is so inadequate (according to the mother). We wish Drew well in anything we are doing for him and find him quite tedious."
Cameron Bolender says part of the problem arises from asking poorly trained people to understand Drew's complicated medical and behavioral needs as well as his rights and needs as a human being and grown adult.
"One of the things that can dignify a person are the things they exercise ownership of," he says. "He can't jump in a car and go to the mall, but he can play with his Legos or his teddy bears or look at a poster his dad gave him. The group homes have total disregard for his property, so stuff gets lost or stolen. For Drew that means sadness."
According to Arizona Administrative Code, which mandates proper staff behavior and client rights, the problem isn't just that Drew gets sad when his goatee is shaved or his Legos become lost. It's that he has a fundamental right to these things and decisions under Arizona law.
But Cameron and his mom have lost pretty much all faith in DDD or any of the laws or state codes that govern it.
"You would think that if you had a family member that was disabled, the hard part would be the disability," says Cameron. "That's nothing compared to the dealing with the bureaucracy. I'm not worrying so much that my brother is going to die if he has a seizure, I'm a lot more stressed out about if he's going to be left on the street with no meds because some respite care provider decided they weren't into taking care of him that day."
He's referring to the July fiasco.
"It was a disaster from day one," says Cameron. "Was there an investigation? No idea."
After that incident, Drew was moved to yet another temporary home. Bolender calls it the worst group home she's ever seen. Drew has a hard time talking about it, except to say it was "pure hell on Earth."
Drew was placed before Bolender could tour the home or meet the staff. When she came to check out his new home, she couldn't believe what she saw. There was broken glass in Drew's room. The swimming pool looked like a swamp. There was no toilet paper in the bathroom. Worst of all, in the few hours she was there that first night, she witnessed one of the other clients physically attack people in the home — including her.
"I was beside myself," says Bolender. "I was horrified." It wasn't long before that client turned on Drew.
Drew was taken to the home Friday night. He was attacked Saturday and Sunday. On Monday, the staff called Bolender to let her know Drew had fallen and bumped his head as he came out of the bathroom. Drew's daily log showed a record of the fall but did not say whether it was the result of a fight.
"The report from Drew was, yeah, he was coming out of the bathroom, but [the violent client] was behind the door and slammed him into it," says Bolender.
For the next two days, Drew's day program reported he was lethargic and sleepy. When Bolender took him to see his family doctor on Tuesday, it turned out he had a concussion. Instead of taking care of the problem, the group home provider told Bolender she had 24 hours to remove Drew from the home.
He went to another home in Glendale, then to the home where he lived in September. In mid-October, he moved to his current home, where he is safe but in limbo. Bolender doesn't know what to tell her son. She doesn't know what to tell his respite provider, who took him with the understanding he'd be there a few weeks. She's since been told he may be there until March.
"I'm a nervous wreck over the continuous uncertainty regarding my son's care," she says. "Just think if we were not actively advocating for him. Where would he be?"
Drew's own assessment is a wise one, particularly from a man whom the doctors said was born with no brain.
"I feel like a wishbone," Drew says, stretching out his arms. "Mom this way, society this way."
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