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How to take control

By Debra Jasper and Spencer Hunt
The Cincinnati Enquirer

If you want to make sure a person with mental retardation is well-cared for and safe, there are steps you can take.

Experts advise:

Start with your county board of mental retardation. Explain your situation, and let county officials describe what's available in your area. Work together on a plan for the person's future.

Apply for Medicaid. The county board can help. Medicaid can pay for a range of services, from nursing care for people who live on their own to around-the-clock institutional care.

Get on a waiting list for care. Regardless of whether you want at-home, group home or institutional care, demand is so high that people wait years for services.

Ask plenty of questions of caregivers: What is the turnover rate? What services are provided? How close are hospitals? Can you visit at any time?

Review Health Department inspection reports in Columbus to find out whether a particular state-run institution or private nursing home has been cited for staffing or serious problems. Or write to: The Ohio Department of Health, Bureau of Long Term Care Quality, 246 N. High St., Columbus, 43216.

Report abuse, neglect or other concerns to your county mental retardation board or the state Department of Mental Retardation. Call:

- The Hamilton County Board of Mental Retardation: 513-794-3308

- The Butler County Board: 513-867-5914 or tip line at 800-418-6423 (ext. 673) Callers to tip line can remain confidential and can call back to a special voice mailbox to answer questions.

- The Warren County Board: 1-800-800-6847

- The Clermont County Board: 513-732-7000

- Attorney General's hot line: 1-800-64ABUSE (642-2873)

- The State Department of Mental Retardation hot line: 1-800-231-5872 and web site at: odmrdd.state.oh.us

Talk to other advocates. Call the Arc of Ohio, the largest advocacy group for the mentally retarded in the state, at: 1-800-875-2723.

Seek help. The Ohio Legal Rights Service can help if you believe a mentally retarded person's rights are being violated, or if you have a legal issue. Call 1-800-282-9181.

Perhaps most important, experts advise family and friends to visit frequently, and be vigilant.

"If family members who are watching out for individuals don't feel things are right, don't stop complaining," says Cheryl Phipps, superintendent of the Hamilton County Department of Mental Retardation. "Keep calling until things do become right."

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

Part 1Part 2Part 3