Mother seeks answers after son dies at Glenwood

Closer monitoring might have saved an Oskaloosa man who died at the Glenwood Resource Center

By WES KAPPELMAN

OSKALOOSA — Timothy Alexander, 26, died on Nov. 22 after suffering several seizures at the Glenwood Resource Center, in Glenwood.

Tim moved to the Glenwood Resource Center in 2003. Around that time, he had a Vagus Nerve Stimulation device installed to help control his epilepsy. VNS devices work by sending pulses of electrical energy to the brain through the vagus nerve from a device similar to a pacemaker. The device is implanted under the skin on the leftside of the chest. A feature of the device is that a magnet can be passed over the device to stop seizures for some people.

Georgette said the magnet stopped Tim’s seizures every time it was used.

Tim’s first seizure occurred when he was 6 years old. He had to be flown to Iowa City after the seizure, and his heart stopped beating twice on the way to Iowa City. Tim had seizures annually until he turned 11, then he was seizure-free from when he was 11 and 1/2 years old to 16 and 1/2. His mother, Georgette Alexander, said he was disappointed when his seizures returned because he had been looking forward to getting a driver’s license.

Once he was 17, seizures came more often. Before an attack, Tim would become aggressive and have headaches. Georgette said if he had a seizure, everyone knew to keep an eye on him, because more seizures were likely during the next 24 to 48 hours.

Tim played challenger league baseball and worked at Hy-Vee for four to five months. He also rode his bike, rollerskated and competed in the Special Olympics. He graduated from Oskaloosa High School in 2001.

Georgette said Tim really liked the first Glenwood house he was in and made progress with some behavior problems, but was moved 5 to 6 times over the next five years.

During his time at Glenwood, Tim would return home monthly for a week at time. The last time Tim was at home in Oskaloosa was the last week before Halloween. During that week, he had six seizures in two days.

Georgette put together how Tim died from talking with Glenwood staff members.

On Nov. 19, Tim began choking at supper and had a seizure. A staff member called Georgette’s husband and said that Tim was on his way to the hospital. That night, Tim was taken back from the hospital and placed in Glenwood’s infirmary.

Georgette said Tim was usually kept in the infirmary for a couple days after a seizure, because more seizures were usually on the way.

Instead of staying in the infirmary for a couple days, Tim was sent back to his Glenwood house. Early on Nov. 20, Georgette said staff noticed Tim was having a seizure and used a magnet on Tim, and he was fine. A doctor then ordered that Tim had to be monitored every 15 minutes.

In the morning, Tim had eaten breakfast, taken his medicine and gone back to bed. At 10:16 a.m., Georgette’s husband called to ask how Tim was doing. A staff member said they would take the phone to Tim, but then told him there was an incident and had to get off the phone. A doctor later called and said that it was his understanding that Tim had been without oxygen or a heartbeat for 7 to 10 minutes.

Tim was taken to Jennie Edmundson Hospital in Council Bluffs where he died on Nov. 22.

Georgette said that oxygen was not kept at Tim’s Glenwood house, despite the fact that staff knew he sometimes quit breathing from his seizures. If he had been in the infirmary under more supervision, Georgette believes Tim would still be alive.

“This incident on the 19th was uncalled for,” Georgette said. “Because of some human mistakes, lives are lost sooner than God planned them to be.”

Georgette has worked for 11 years at the Department of Human Services and worked for 20 years with people that are disabled. She said she thinks consumers can have their needs met in a smaller environment with smaller staff.

“I don’t see a need for Glenwood to be in business anymore,” Georgette said.

Georgette has hired an attorney to review the reports from the hospitals and Glenwood and possibly pursue legal action. She also plans to send letters to Sens. Tom Harkin and Charles Grassley, Rep. Leonard Boswell and Iowa Gov. Chet Culver.

Tim had been waiting for an opening at REM Iowa for more than three years, Georgette said. She said Tim had also been waiting for an opening at Mosaic Group Home in Osceola for a few months.

Sylvia Piper, executive director of Iowa Protection and Advocacy Services, has been monitoring Glenwood for some time. She said Glenwood has done poorly since before 1999, when Protection and Advocacy contacted the United States Department of Justice with concerns at the Glenwood and Woodward facilities.

The DOJ investigated, and entered into a settlement agreement with the state of Iowa in 2004 that required both facilities to improve.

Piper said Protection and Advocacy monitors the state facilities, DHS and the Department of Inspections and Appeals. If someone dies at a facility, Protection and Advocacy may do an independent investigation and may also review investigations other agencies completed for quality assurance.

Piper said the multiple deaths at Glenwood this year are highly questionable. She said her agency is looking for patterns and has been looking into every death at Glenwood from Oct. 1 to the latest on Nov. 25. So far this year there have been 12 deaths at Glenwood, according to a letter to state legislators dated Dec. 15 from DHS.

A call to the Glenwood interim superintendent was not returned. DHS public information officer Roger Munns supplied the letter to legislators with information on Glenwood by e-mail. He wrote it would be out of place to comment because experts are reviewing the case and Georgette has said she would bring a lawsuit.

The e-mail also states “parents and relatives of people who live at Glenwood are overwhelmingly supportive of the care at the facility. We are saddened when there is a death.”

The number of deaths at Glenwood is higher than the last four years, despite an annual decline in population, from 390 in 2004 to 319 in 2008. There were 11 deaths in 2006, when the population was 347.

The letter also outlines plans to improve Glenwood.

The DOJ is allowing Glenwood more time to make those improvements and comply with the 2004 settlement agreement. Jamie Hais, from the DOJ’s office of public affairs, wrote in an e-mail that pursuant to a court order issued in April, 2008, Glenwood’s compliance deadlines were pushed back. Now, Glenwood must achieve substantial compliance by Oct. 30, 2008, and maintain substantial compliance until April 30, 2010. She also wrote that the DOJ is continuing to work cooperatively with the state.

Piper said the state legislature and the administration need to take a leadership role in developing community programs for people with disabilities. She said Tim could have had a different outcome if there were more community programs available.

Piper blames Glenwood’s problems and Tim’s death on the administrators and not the direct care givers.

“He is just a prime example of a lack of will, political will in this state, to provide appropriate community services for people with disabilities,” Piper said.

According to the letter to legislators, “The newly implemented Money Follows the Person Grant is designed to further facilitate the rebalancing of the service system in favor of community-based care for persons served in ICF/Mrs. This strategy is unique in that it provides 100% federal funding for one-time transition services. Iowa identified two supports critical to success of community placement: behavioral support services and mental health outreach. The MFP grant will fund these and other transitional services needed to ensure successful community placement.”

“This grant is a 5-year grant and with the complete implementation, initial projections are that 100+ persons will be transitioned from GRC [Glenwood] and WRC [Woodward]. This will offer a natural opportunity to further reduce the number of ICF/MR beds that are operated.”

Piper said that Glenwood is still admitting people and that she would like to see the move to more community-based programs occur faster.

Georgette agrees.

“I’m not going to be happy until they get rid of Glenwood,” Georgette said. “I’m going to do everything in my life to make sure people remember who my son was.”

Herald staff writer Wes Kappelman can be reached by e-mail at news2@oskyherald.com

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