E N Q U I R E R   S P E C I A L   I N V E S T I G A T I O N
Reform comes slowly despite many warnings

By Spencer Hunt and Debra Jasper
The Cincinnati Enquirer

Abuse and inept care in Ohio's mental retardation system are so common that officials are sending out round after round of statewide alerts to counties and private agencies.

The notices tell care workers how to prevent dehydration, pneumonia, feeding-tube complications, scaldings even thefts of mentally retarded people's ATM cards.

There's just one drawback: Few people read them.

"I've got to get information to direct-care staff, and that's the key, and we don't have that solved here today," says Ken Ritchey, director of the Ohio Department of Mental Retardation. He calls the alerts a "starting point."

Those same words can describe attempts to make major reforms in the way Ohio deals with 63,000 mentally retarded people.

Efforts got under way after a 1999 federal report skewered Ohio's system for failing to protect mentally retarded people from abuse, neglect and poor medical care.

The report blasted the state for lax oversight and conflicts of interest, questioning how counties can objectively investigate agencies they hire and monitor.

Federal regulators found that some people were in "immediate danger" and gave Ohio an April 2000 deadline to overhaul the system or risk losing hundreds of millions in Medicaid funds.

Despite the urgency, Ohio has been slow to act. At the state's request, regulators have extended the deadline for fixing the system seven times.

Mr. Ritchey notes that a committee of state officials, private agencies and advocates now reviews all confidential reports of deaths, abuse and neglect filed by counties. Previously, the reports were sent to Columbus and largely ignored.

The department also plans to use a new computer to better track reports. It plans to send millions more dollars into poorer counties in the next two years to help them pay for care. And this July, it expects to give up to 3,400 people in residential group homes more freedom to choose where they live.

"I'm a big believer in self-determination," Mr. Ritchey says. "I can't think of anything that will help the system more."

Still, he says, there is much to be done.

A plan to move more people out of institutions and into community settings has met with fierce opposition from unionized care workers and other special interests.

Many people who want to live in their own places still would need government-funded nursing care and other help. Such care is expensive, and the state has not yet figured out a way to pay for it.

Even if the money were found, mentally retarded people still would face serious issues. The Enquirer found that people who are supposed to get at-home care daily or weekly are rarely watched over now. Many live in run-down apartments, have little to do and are lonely.

Moreover, recent California studies found that mentally retarded people are more likely to die in community group homes and supported-living apartments than in state institutions where more medical care is required.

Gary Tonks, executive director of the Arc of Ohio, the largest advocacy group in the state, acknowledges that problems persist but says he prefers to focus on progress Ohio has made.

"It's not happening fast enough, but we're traveling at light speed compared to what we were doing," says Mr. Tonks, who serves on the state committee that reviews incidents of abuse and neglect.

"The big step this year is people are reading the reports," he says. "Before, no one even read them."


 
Inside the Report
Failing the fragile
Ohio is supposed to care for 63,000 people with mental retardation but the system is failing.

Twelve who died
Our investigation found a dozen questionable deaths and there could be more.

Unequal system
The kind of care mentally retarded people get depends largely on where they live.

Who is accountable?
The agencies and departments charged with enforcing minimum standards of care.

Slow reform
The agencies and departments charged with enforcing minimum standards of care.

Take control
How to make sure a person with mental retardation is well cared for and safe.

Photographer's album
A visual journey into the lives of Ohio's mentally retarded.

Ohio's Secret Shame

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