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

"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."

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.