Thursday, July 11

Leaving LDC:

Trauma for residents and their families

[JULY 11, 2002]  Parents and guardians of residents of the Lincoln Developmental Center are puzzled, distressed and angry. They do not understand why Gov. George Ryan and the Department of Human Services want to close the place where their child, or perhaps a brother or sister, has been cared for so well.

Many of them are also afraid. Some families have spent years trying to find the proper placement for a developmentally disabled family member, experiencing failure after failure until that family member came to LDC. Others are elderly parents who want desperately to see a child they love safely and happily settled while they are still able.

Donna Hogan feeds her daughter, Angela, who is confined to a wheelchair and does not speak or see well. [Photo by Bob Frank]

Moving their loved ones from LDC will be a traumatic experience, they say. The developmentally disabled need a predictable routine and become upset when that routine is disrupted. They fear a move will bring back behavior problems that have been latent and that the transition to a new place, new caregivers and a new routine will be long and difficult.

Marlene Gregory of Bloomington can predict the trauma her 39-year-old stepson Brian will have settling into another institution.

"I am afraid he will regress. He is bipolar and has aggressive behavior cycles. Medicine takes the top off the high and the bottom off the low, but he still has difficult moods," she said.

When he first came to Lincoln, he had serious problems. He had been in a living center in Bloomington that could no longer manage him and sent him to a hospital psychiatric ward. He was then sent to a mental health facility in Springfield, which recommended he come to LDC.

"You can’t believe how bad it was when we brought him to Lincoln. He didn’t want to be there; he was in restraints. These people have done wonders."

Even after he had adjusted to living at LDC, simply moving him from one living area to another brought on difficult behavior. "He was on suicide watch and had to have one-to-one supervision for three days."

Marlene does not want to see either her husband, Ronald, or her stepson have to experience that adjustment process again. "Ronald is 66 years old and has heart problems. I’m not saying Brian couldn’t adjust, but I don’t want to see him go through what he went through the first year he was here. The people he works with at LDC know his moods and their cycles. I can’t say enough good things about the people who care for him here."

Many parents and guardians fear more than just the move from a familiar place; what keeps them awake nights is concern that a new placement won’t be the right one.

 

One group has received letters from LDC saying their child or sibling has been recommended for community placement. Some families have had negative experiences with such placement in the past.

Community placement in most cases today means group homes, usually CILAs (Community Integrated Living Arrangements). Lincoln has five of these scattered throughout the community, and two more are in the works. CILAs usually house eight residents and are staffed 24 hours a day or whenever any resident is present.

CILAs have trained staff members and nurses on call 24 hours a day, but they do not have the funding to offer the array of services that a state-operated facility such as LDC has, said Chris Patton, in charge of CILAs for Residential Developers, an Alan G. Ryle company. The company operates two CILAs in Lincoln and is building two more.

In contrast, LDC has doctors, nurses, psychologists, physical therapists, a pharmacist, an X-ray technician, an audiologist and a speech specialist on staff and available every Monday through Friday. Licensed practical nurses are on duty on both day shifts in each living unit to give medication and do treatments.

Although CILAs are privately owned and operated, they are supervised by DHS, the agency that is in charge of state-operated facilities such as LDC, and must meet a number of national and state regulations, Patton said.

Frank and Sheri Ciastko of Decatur have tried a group home and found it didn’t work. They call their son Peter’s experience a dismal failure.

"Our son has behavior issues. The experiment failed because the staff was inadequate, as was staff training. There was constant turnover of staff, some there no longer than a month. The only way to let Peter stay was that he be on large amounts of medicine," his father said.

"The medicine turned him into a shuffling, drooling zombie. He looked like an old man."

At LDC Peter was weaned off the medication and now takes none, according to his father.

"LDC is one of the very best things that has happened to Peter. Peter is a higher-functioning individual, but his behavior disorder makes it difficult for him to function without a strong structure and a well-trained staff to deal with him. He did not have that in group homes but has it at LDC.

"Group homes are a good idea for those who can function in them, but our experience is they don’t have the staffing to provide the kind of services we get at LDC," Ciastko said.

Patton concedes that at present group homes cannot meet the needs of everyone. "CILAs have to screen prospective clients. There are people we can’t service because the state doesn’t provide the funding," he says.

JoAnn Ribelin of Champaign is guardian for her sister, age 61. She, too, received a letter saying her sister had been recommended for a group home.

"We tried a group home for a year. It was my idea. Most residents there were highly functional, but my sister was not. Everyone with a behavior problem got a diagnosis of bipolar so they could administer psychotropic drugs. I don’t entirely disagree with drug therapy if it is warranted, but my sister was on five different psychotropic drugs," Ribelin said.

"I said no more drugs. They said they would have to put her in a nursing home. I said I would appeal the decision, and they sent her to Lincoln.

"Within two months she was off all drugs. They don’t even give her sleeping pills. If she doesn’t sleep at night, the staff let her sit up with them until she gets sleepy."

Ribelin thinks the drugs may have done permanent harm because her sister is losing her communication skills and is now incontinent.

 

"I can’t think of one positive thing about his stay in group homes," said Harriet Byers of Champaign. Her son Mark was in several group homes in Champaign, and it is not an experiment she or her husband, Bill, want to try again.

"He has too many medical and behavior problems to function in a group home. He is severely diabetic and has gone into insulin shock because his eating wasn’t properly monitored. He has the mind of a 5-year-old, yet they were trying to teach him to give himself his insulin injections.

"He is a non-reader, but they were trying to teach him to ride the bus home from the developmental service center. One rainy night we got a call, asking if we knew where Mark was. He was found in the bus station scared to death. They just had unrealistic plans for him.

"We couldn’t be happier with his care at LDC. The staff members here are as much his family as his father and I are."

Angela Scott, 25, has been at LDC since she was 2. She cannot walk and is confined to a wheelchair, does not speak, does not register what she sees, and has severe seizures that could be fatal if not treated promptly.

When LDC closure seemed imminent, her parents, Donna and Joe Hogan of Springfield, considered placing her in Jacksonville, another state-operated center for the developmentally disabled. Early this year they visited Jacksonville and met with the director and staff, including a medical doctor. The Jacksonville staff agreed they could not meet Angela’s medical needs and recommended that she stay at Lincoln.

Now they are puzzled and upset because they have received a letter telling them Angela is a candidate for community placement.

 

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"Angela has never been in a group home. She needs a nurse to give her medication and sometimes must see a doctor daily to control her seizures," Donna Hogan said.

Because Angela cannot speak, it is important that she be with staff who know her. She can make a few sounds to indicate what she needs, and those familiar with her understand what each sound indicates. Consistency of care is essential for her, her mother said.

The Hogans are concerned now because a shortage of technicians at LDC (those who work directly with the residents) means that Angela is sometimes cared for by staff who do not know her. After she was moved from Coty Cottage to Bowen, a technician who had been temporarily assigned to Bowen saw her facial expression and thought she was smiling. The "smile" was actually a sign she was having a seizure.

The Hogans plan to attend a conference to learn more about community homes, but they do not believe Angela can survive in a group home because of lack of medical staff. Also, Donna is afraid for her daughter’s personal safety because she is so helpless.

"If LDC closes, I have no clue where she can go," she said.

 

Eleanor and Norlan Newmister of Normal are in their 80s. Their son, Melvin, has been at LDC since 1972.

The Newmisters, too, have received a letter saying their son is recommended for community placement. He has a mental age of a little more than 5 years, has seizures, hearing loss and vision problems.

According to the letter, an interdisciplinary team evaluated Melvin’s health and behavior profiles and determined that he could live in a group home, but the Norlans say the evaluation is not complete.

"It didn’t include all of his health problems, and his behavior profile was not complete or thorough," Eleanor said. "The letter doesn’t reveal how they made the decision or when."

Eleanor said she and her husband had requested, in two different handwritten memos to LDC director Peggy Davidsmeyer, to be part of the reviewing process for their son’s placement, but they were not included.

The Norlans have always been very involved with their son’s care and with organizations for the developmentally disabled. Melvin stayed at home until he was 18, and the Norlans and other parents started their own school, raising the money to pay teachers.

They also worked to set up a home for the developmentally disabled in Bloomington/Normal, were on the board of the Occupational and Developmental Center in Bloomington, served on the MARC and Homes of Hope boards, and were on a statewide advisory council for the developmentally disabled.

They are active members of the Lincoln Parents Association, which has been unwavering in its support for keeping LDC open.

Since the new management team came to LDC in October, Eleanor says, communication has been very difficult. The five-member team came in after allegations of abuse and neglect caused the Lincoln facility to lose its federal funding for a brief period. The team’s mission, according to a DHS spokesperson, was to correct problems at the Lincoln facility so it would meet health and safety standards.

"We wanted to be on a committee to help get LDC back on track, but we were never called to meet on that at all," she said.

These parents say they are not convinced that LDC is being closed because, as Gov. George Ryan says, its operation is a threat to the health and safety of its residents.

"The governor said we’ve been brainwashed," said Ronald Gregory. "That isn’t true. We’d be the first to go to the governor and ask that our loved ones be moved if we thought they were in jeopardy.

"Gov. Ryan needs to come back to LDC and not just spend 20 minutes. He should spend a week here and actually see what goes on with staff and residents."

"The governor said he cares about the safety of the residents. Is he saying we, the parents and guardians, don’t care as much as he does? That’s just totally illogical," said Frank Ciastko.

"They say we parents don’t know what we are doing. My husband and I have been involved for years. We are educated on this. We have lived for years with this, and we keep up with it," said Eleanor Newmister.

Newmister and others believe the LDC closing is really a way to help the state solve its budget problems.

"The government wants to get out of the business of caring for the developmentally disabled," she said. "It’s too expensive."

 

According to Patton, the state pays at least twice as much to maintain a developmentally disabled person in a state-operated facility as in a community home: about $106,000 per person per year for the state facility and from $44,000 to $51,000 per person per year for the community home.

He also said that with adequate funding, community homes could serve almost all of the developmentally disabled.

Small-group homes, where the developmentally disabled live in the community in a family-type setting, are the trend of the future, he added. Illinois is lagging behind other states in closing state-operated congregate living settings and putting residents in community homes.

He conceded that there may be more turnover of employees in group homes, because they can afford to pay only $8 or $9 an hour, which is less than employees in a state-operated facility are paid. Still, he believes parents don’t have the full story. Problems can occur in state-operated facilities as well, he said.

June Reynolds, nursing services coordinator for the Alan G. Ryle group, believes the standards of care in group homes have gone up steadily over the years. In 1999, for example, DHS mandated 40 hours of classroom training and 80 hours of on-the-job training for all direct-care staff members in group homes in Illinois.

The Norlans and other parents are unclear about what will happen if their family members are placed in group homes and then have problems. They don’t know if they will be able to get their loved ones back into a state-operated facility and feel they might be forgotten by the Department of Human Services.

Kathleen Muniz, assistant associate director of the Office of Developmental Disabilities, says these families will not be deserted.

"If someone is having a problem in a CILA, we will first of all offer technical assistance, trying to resolve the problem," she said.

She agrees with members of the Alan G. Ryle organization that right now not all of the developmentally disabled are good candidates for community living.

"I think definitely there are people at this time that have the level of intensity of need for the services of a state-operated facility," she said.

However, she added, "There is no guarantee that every family that believes its member needs a state-operated facility will be placed in one. But we are going to make our best effort to accommodate guardians and family preferences wherever possible. Our priority will be to see that people’s needs are met."

 

The Newmisters believe their son’s needs are being met best at the Lincoln facility that has been his home for 30 years, and they will not consider moving him as long as it is open. If LDC closes, they do not see a clear and easy solution.

"We have no idea what we are going to do," Eleanor said. "This is a tremendous responsibility, to make a decision for someone you love so dearly and be afraid it is wrong."

[Joan Crabb]

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Mount Pulaski
flips switch

[JULY 11, 2002]  With a flip of the switch, Mayor Bill Glaze (left) and Alderman John Bates (center) started the new lift station that was recently completed near the intersection of Chestnut and Belmont streets in Mount Pulaski. Also attending was Alderman John Poffenbarger.

The lift station serves the northeast quarter of Mount Pulaski, which includes the T.I.F. district.

The new lift station was made possible by an Illinois FIRST grant, Rep. John Turner and Sen. Bob Madigan. The city of Mount Pulaski acted as its own contractor on the $350,000 project and as a result saved approximately $40,000.

 

The Gorman-Rupp pumping equipment was supplied by Mickey Bernard of Hydrokinetics in St. Louis, Mo.

The new station has twice the pumping capacity of the old lift station, which was constructed in 1959.

[Mike Patridge]

 

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