Matt Rupe says he was 3 months old when he accidentally rolled off of a bed, smacked his head on the floor and injured his brain.
He recalls growing up with tensions at home, abuse by an acquaintance and his own drug addiction. He says he eventually became a ward of Indiana and lived in a private home for kids with disabilities and injuries in southern Michigan until he was 21.
Today, at 31, he has a guardian at a local nonprofit. And he lives with the highs and lows of depression and still some suicidal thoughts.
Every one of these steps in his life is critical to him as he tracks his own mental health care and the long list of drugs he takes. That's why, after Madison Center's finances caused it to implode and his care shifted to Oaklawn in 2010, one discovery really jarred him.
He'd assumed Oaklawn knew his life and medication history. He thought the staff had his files. But they didn't. Oaklawn was starting over with him.
One day, exasperated by some turnover in clinical staff, he asked a receptionist, "Do the doctors know what's going on?"
That's when he found out.
"I thought for sure Madison Center would leave my files there, and everything would be OK," Rupe said.
Other clients have told The Tribune that they thought so, too.
Instead, the former Madison Center's outpatient records moved to a warehouse in Benton Harbor, where they remain until they will be destroyed in September 2015.
When Oaklawn stepped in and took over the outpatient care, officials there didn't want to assume liability for the records, some of which were in disarray, said CEO Laurie Nafziger.
Besides, HIPPA laws over medical privacy meant that Oaklawn staff couldn't open the records without the patients' permission.
And Oaklawn alone was taking on roughly 5,000 patients, making it unfeasible to seek signed releases for each one, said Kim Lambert, Oaklawn's manager of adult case management and residential services in St. Joseph County.
Notices were posted at Oaklawn, letting patients know their records had been moved to Metro Business Archives, said the warehouse's general manager, Tina Ragsdale.
"There's a lot of institutional memory in these walls," Nafziger said. "It wasn't like we started from zero."
Oaklawn kept much of the Madison Center staff, and some of them may have kept notes on their clients or at least remembered what treatments worked for certain clients, Lambert said.
Lambert also noted that it would have been "very helpful" to have the records.
When a patient starts fresh on psychotropic drugs, it can take a long time -- sometimes months of trying the medications -- to achieve the desired effect.
Psychiatrists often need to change doses or drugs over time.
"Every medication I was on was different and had a different side effect," said Rupe, who recalls one drug that caused his weight to balloon when he was with Madison Center.
He's been through a litany of psychiatrists and medicines and now feels he's reached an equilibrium.
James Kauzlaurich, of South Bend, said he, too, has been on many medications for depression. Some made him anxious or twitchy. The drug Abilify helped him to look forward to things for the first time in 30 years -- he loved that part -- but the other effects scared him, like an inability to swallow.
When he went to Oaklawn, he described that experience and shared a list of medications he'd been taking. Now he feels as if he's found balance.
The inpatient records from Madison Center are a different story.
Memorial Epworth Center took on all of the inpatient care -- that is, for those lodged overnight. In doing so, it also agreed to store the final 10 years of inpatient records from Madison Center so that it could provide continuing patient care, said Memorial Hospital spokeswoman Maggie Scroope.
Physicians and staff there may access those records without having a patient sign a release, she said.
THE RAPID TRANSITION
Metro Business Archives has been around since 1977, storing records for attorneys, hospitals, banks, real estate and the like.
When it agreed to take the Madison Center outpatient records, Ragsdale said, "it was supposed to be a methodical transition."
That was the plan. Then Madison Center's finances unraveled more quickly than anyone expected, forcing Oaklawn and Memorial Epworth to take the reins sooner and to lodge the records in her warehouse in September 2010.
The bondholders who owned Madison Center at the end didn't even pay the full cost of storing the documents, Ragsdale said. So she offered them a deal, agreeing to keep the records for five years -- half as long as the bondholders originally wanted.
"They paid me what they could pay me, and we just went forward," she said.
There are tens of thousands of records. But Ragsdale doesn't know how many patients that represents. In fact, she said, "I don't know what's in the boxes."
Each box comes with a code that's scanned in. Then the staff simply stores them. They don't pop them open and pull out records unless someone files a written request.
REQUESTS FOR FILES
About twice a week these days former patients request files at Metro Business Archives, spending an average of $10 per request and $50 at the most, Ragsdale said. It had been more frequent just after the transition to Oaklawn.
But the warehouse often fields requests for youths' records from the probate courts and provides those at no cost, she said.
"If they're in court, they're dealing with some serious issues," she said. "But most of the time we have to charge a minimal fee to cover our expenses."
Oaklawn seldom requests a patient's files unless there's a special circumstance, such as a court hearing where they're needed, Lambert said. The cost of copying is an obstacle.
Mental health professionals don't need to see each piece of paper in a patient's file, Nafziger said. The most essential are the patient's last assessment and the last medicines prescribed, and as time goes one, she added, the list of medications from long ago matters even less.
Would it help if patients had kept their own records?
At Memorial Epworth, which stores 10 years of patient records on its campus, Connie McCahill said patients don't generally keep good track of their medications anyway -- no matter whether it's for mental health or medical issues.
"You'd be surprised at the number of patients who don't know what meds they're taking," said McCahill, director of Memorial Epworth and chief safety officer for Memorial Hospital. She notes that they'll say things like, "Well, I took a little red pill."
It's more helpful, she said, for staff to call the drugstore the patient had used or the person's primary care physician, if there is one.
But, in many cases, she said, one of the key reasons why the patient is back in the hospital is because he/she hasn't been taking the pills.
How to request your records
All patients will need to sign a release and present a photo ID.
Outpatient: If you're looking for records of your care as an outpatient client of the former Madison Center, you'll need to request it from Metro Business Archives in Benton Harbor by calling 269-926-4100 or 800-983-5117. General Manager Tina Ragsdale recommends having them sent directly to the doctor or professional who needs them. That ensures that records won't be lost and that the records arrive more quickly. Turnaround is about 72 hours.
Inpatient: If you're looking for records of your inpatient care at Madison Center, you must contact Memorial Epworth Center at 574-647-8216.
Staff writer Joseph Dits: