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

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.