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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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