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

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.

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.