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

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.