[Guest guest]

Please, honor the life of and read his story. It's not an easy

story to read, but we can not change that which we do not acknowledge.

After you read this, think about Governor Pat Quinn's recent deal with AFSCME.

He agreed to keep state operated facilities (like Alden) open and protect the

jobs of the people who work there through June 2012. Then think about

and his mom and every other human being living in a state operated facility.

• Illinois spends 42% of its Illinois Department of Human Services, Division

of Developmental Disabilities (DHS/DDD) budget on institutions, ranking 48th in

the country. The average state spends only 24%, so Illinois is spending 175%

above the national average. The only states worse than Illinois are Kentucky,

Texas and Mississippi.

www.chicagotribune.com/health/neglect/ct-met-kids-jeremiah-20101007,0,5795939.st\

ory The final hours of

For two days, a boy with profound disabilities grew mortally ill, yet no one at

his care facility called a doctor. Not his case manager. Not a day nurse, and

not his night nurse. As the third day dawned, another nurse finally called for

help. But it was too late. became the most recent fatality in a pattern

of harmful care at Alden Village North.

By Sam Roe and S. Hopkins, Tribune reporters

9:24 PM CDT, October 7, 2010

Nine-year-old survived for years not being able to walk, talk, go

to the bathroom by himself or eat without a feeding tube.

But ultimately he could not survive living at Alden Village North.

One morning last year, when the facility for children with severe disabilities

dropped off at school, teachers were alarmed to see fluids leaking

profusely from the hole where his feeding tube entered his abdomen. His shirt

and pants were soaked, and a teacher had to use a mop to clean up the puddle

under his wheelchair.

The school had Alden Village North pick him up, but teachers were outraged when

he returned to class the next morning looking worse than before — pale,

lethargic and moaning. Teachers placed him on a mat, where he shook in the fetal

position.

A school nurse said she demanded that Alden Village North come for him

immediately, but the facility balked, telling her to give him Tylenol. Three

hours passed before Alden picked up , even though the facility is a

five-minute walk away. Back at Alden, records show, staff did not assess his

illness, monitor him during the night or even call a doctor until the next

morning.

soon died in a hospital of shock, infection and a bowel obstruction.

Before 's death, a physician told his mother that surgery — though

physically punishing and an extreme long shot — could be attempted.

" No, " his mother responded. " He's been through enough. "

is among 13 children and young adults at the North Side facility whose

deaths have led to state citations since 2000, a Tribune investigation has

found. Some of these deaths, records show, might have been prevented had

officials at the facility taken basic steps, such as closely monitoring

residents and their medical equipment.

Despite the mounting deaths, the facility has not improved its care over the

years, records show. The state has found more serious violations there in the

past three years than at the other nine Illinois homes for children with

disabilities combined.

Moffitt, one of 's teachers at Gale Elementary, said her school

would need a full-time staffer just to deal with all of the day-to-day issues

involving the students living at Alden, from poor hygiene to lack of proper

clothing.

" I hold my breath every time I send my kids back home there, " she said.

Alden Village North, formerly known as Mosaic Living Center and the Pediatric

Rehabilitation Institute, has had three owners in 10 years. According to the

state, the operator since 2008 has been Floyd A. Schlossberg, president of Alden

Management Services. His firm runs more than 20 nursing facilities in Illinois,

primarily providing care for the elderly.

Schlossberg did not respond to requests for an interview or to questions about

's care and his mother's suit against the facility. In a brief

statement, his company said it could not comment on matters involving pending

litigation.

To piece together 's final days, the Tribune interviewed key witnesses

and reviewed state documents obtained through the Freedom of Information Act,

including inspection reports on Alden, statements by facility employees and

notes by Illinois Department of Public Health investigators.

A former nurse at 's school, Felicia Wenz, told the newspaper that his

death was one of the most egregious cases of child neglect she has seen. " That

had to be the most painful death imaginable, " she said.

Moffitt said did not have to die.

" It's just sick, " she said. " It's disgusting. It still haunts me. "

Kathern never wanted to put her son in a nursing facility.

For years she had cared for in her suburban Harvey apartment, carrying

him from room to room, changing his diapers and feeding him four times a day

through his gastrostomy tube, or G-tube, which allowed food to be pumped

directly into his stomach.

Doctors, she said, had inserted the G-tube when was 18 months old

because he was having trouble holding food down and gaining weight. More

seriously, he was exhibiting severe developmental delays and was eventually

diagnosed with profound cognitive disabilities.

He could not walk, talk or play many games like other children. Although he

enjoyed rolling around the living room floor with his brother and sisters, he

often became too excited and started scratching and clawing, and the fun would

have to stop.

When again had trouble gaining weight, he was hospitalized, and a

doctor recommended that he be placed in a nursing facility to ensure he would

thrive. His mother, who was single and unemployed, said she feared that if she

didn't put him in a facility, child welfare authorities would seek custody.

So in 2004, when was 4, put him in the closest available facility

to her home that cared for children with disabilities. Alden, then called Mosaic

Living Center, cared for about 90 children and adults with disabilities,

including blindness, cerebral palsy and cognitive impairment. When toured

the facility, an aging brick building on Sheridan Road in Park, she

thought the staff was friendly and the children well cared for.

And at first, had few problems. But in 2007, staffers found him one

morning crying and irritable, a state inspection report says. Several hours

later he was sent to a hospital, where doctors discovered he had a broken arm.

sued Alden, alleging neglect, but she said she didn't move him because the

next-closest appropriate facility was far away in Indiana.

She said she continued to visit him as much as possible, taking a two-hour bus

trip to the North Side. On nice days, she would wheel him across Sheridan to

Lake Michigan, where she would lift him out of his wheelchair, show him the

water and whisper in his ear: " Mommy loves you. It's going to be OK. "

She also enrolled him at Gale, a Chicago public elementary school a few blocks

from the nursing facility. Of the 510 students, 16 had multiple disabilities and

severe cognitive impairment. For them, schoolwork involved learning simple

skills, such as how to hold a cup.

Moffitt, a special education teacher, said she was trying to teach to

grasp objects. Over and over she would place her hand atop his and move it to an

object, hoping he could do it on his own someday. His progress was slow. Moffitt

estimated 's cognitive age at about 6 months.

But she found him to be an easygoing, happy child whose head was in constant

motion. His biggest thrill, she said, was " mat time. " For 40 minutes each

morning and afternoon, teachers would place on a large blue mat, where

he would roll from side to side, clutching a red plastic tambourine in one hand

and hitting it on the mat to jingle the bells.

The boy's face would light up, and he would exclaim, " Ahhh! Ahhh! " He banged the

tambourine so much that Moffitt had to tape it together repeatedly.

When Moffitt began teaching at Gale in the spring of 2009, she had a master's

degree in special education and 14 years' experience. She had heard little about

Alden but said she immediately noticed that its students were different from

kids living at other facilities or with their families. Their hygiene was often

poor. Their clothes were frequently too small. Some of their wheelchairs needed

repairs.

But more jarring was what she and other Gale employees saw the morning of May

19, 2009, when arrived at school with a yellowish liquid drenching his

shirt and pants and dripping onto the floor.

It appeared that the liquid was leaking from his G-tube, but when Wenz, the

school nurse, looked closer, she saw that " it was coming out of his abdomen,

where the G-tube is inserted, " according to her statement to state public health

investigators.

Wenz called Alden and had the facility pick up from school.

What Alden staff did next is unclear. Investigators found no evidence that

nurses inspected 's G-tube or examined his abdomen for signs of bowel

obstruction. One Alden nurse told a supervisor that she did do such an exam and

found nothing, but she did not document her observations in her nursing notes.

Other Alden staffers told investigators appeared normal.

But overnight, nursing assistant Frimpong told investigators,

was " tossing and moaning all night long. "

The next morning, Gale staffers were astonished to see back in school.

" He was pale. His eyes were sunken like he was awake all night, " Wenz told

investigators. " He was shaking and grunting and in a fetal position. "

Moffitt said 's G-tube wasn't leaking like before, but she knew he was

sick as soon as she helped him off the bus; he had little energy and was

moaning, something she had never heard him do before. When she placed the boy on

the mat in her classroom, he didn't roll around with the tambourine but lay on

his side and groaned.

At 9:45 a.m., Wenz asked Alden to pick him up from school, but, according to her

statement to investigators, " the nurse at the facility argued with her and said

to give him Tylenol. "

An hour and 45 minutes later, continued to lie in the fetal position,

records state. His skin was clammy, and he was making gagging sounds. Moffitt

told investigators she didn't call 911 partly because didn't have a

fever. But the school nurse called Alden again, this time complaining to the

director of nursing.

Finally, at 12:45 p.m. — three hours after the school initially called — an

Alden case manager showed up. Teachers lifted the boy from the mat and placed

him in his wheelchair. The case manager then began pushing back to

Alden.

When arrived at the facility, nurse Jimenez reported he was

moaning but not feverish, according to her nursing notes and statement to

investigators. She decided to give the boy Tylenol.

Investigators would later ask why she didn't call a doctor. " I assumed he looked

well, " she responded. " And I was about to leave. " Her shift was ending.

That night, 's nurse was Morayo Oladeinde. When she came on duty at 11

p.m., was sleeping but " restless off and on all night, " she reported.

She gave him more Tylenol.

She told investigators that wasn't moaning, but Frimpong, the nursing

assistant, reported that the boy — for the second night in a row — was

" tossing and moaning all night. " , he said, " looked really sick. "

Oladeinde's night shift ended at 7 a.m. She was relieved by Digna Fatog — the

only Alden nurse, records show, who reacted to 's condition with

urgency.

When Fatog began her shift, she found in his wheelchair, pale and

lethargic. Alarmed, she asked the night nurse why she hadn't sent him to a

hospital. Oladeinde did not answer, Fatog said. When investigators later asked

Oladeinde why she did not call 's doctor, she said, " No reason. "

Fatog's nursing notes said 's abdomen was distended " with board-like

rigidity. " Another nurse told investigators the boy was moaning, his heart rate

was up, he was drooling excessively and he was sweating so much his clothes were

wet.

Fatog noticed his oxygen saturation rate — the concentration of oxygen in the

bloodstream — was low: 89 percent, compared with a normal range of 95 to 100

percent.

She immediately hooked up to an oxygen tank and called the boy's family

and physician — the first time, records show, anyone had called his doctor in

the 48 hours since he showed up at school with his abdomen leaking fluid.

The doctor gave orders to send to the emergency room. Ambulance

paramedics found him breathing rapidly and his pulse racing at 160 beats per

minute.

At Advocate Illinois Masonic Medical Center, emergency room doctor Max

Koenigsberg saw that was pale, gray and in shock. Blood was in his

G-tube, and he had bloody diarrhea and a massively distended abdomen.

had stopped breathing on his own, so a tube was inserted into his windpipe, and

he was connected to a ventilator, records state.

About 11:15 a.m. was transferred to Children's Memorial Hospital, where

physicians found him to be in extremely critical condition, likely related to a

" catastrophic " event involving his stomach and intestines, probably an

obstruction of some kind, records state.

On the way to Children's Memorial with her sister, 's mother didn't

realize how sick he was and thought he would be fine. He had been in and out of

hospitals many times before.

She said she was stunned when a doctor called her cell phone to say was

in grave condition and " may not survive even if he could tolerate a surgical

procedure. "

Unwilling to subject her son to any more suffering, she decided to forgo surgery

and let him go. Hospital staff took photographs of the two of them together as

well as ink and plaster prints of one of his hands. then died at 9:25

p.m., in his mother's arms, surrounded by family.

When wasn't in class the next day, a Friday, Moffitt thought he was out

sick. It wasn't until the following Tuesday that the teacher learned from a

school attendance aide that had died.

" I don't think I've ever been shocked like that in my life, " she said. " After

that, shock had a new definition. Never ever, ever, did I ever think he was

going to pass away — ever. "

There was no public announcement of his death at the school. No e-mail was sent

to parents. When 's " book buddies " — the Gale students who read to him

— asked where he was, Moffitt felt she had to tell them.

One student wanted to know: Why did he die?

" Unfortunately, that sometimes happens to children with multiple disabilities, "

she said she responded. " His body just gave out. "

But she didn't believe that.

A few days after was buried, Moffitt called the Illinois Department of

Public Health and filed a complaint against Alden.

Over the next several weeks, investigators interviewed Alden nurses, Gale staff

and 's doctors.

When investigators asked Tess o, then Alden's acting nursing director, why

it took so long for her staff to call a doctor, she said, " I don't know. "

She then pointed fingers at 's school, records show, asking why the

teachers didn't call 911 if they thought he was in so much distress.

In an interview with the Tribune, Moffitt responded: " I'm not his guardian. I'm

not Alden. " She said that when a teacher sends a student home sick, the

expectation is that the parent or, in this case, the facility will seek proper

medical care.

" It was horrible — horrible — to know that I sent him home and nothing was

done, " she said.

When its inquiry was complete, the state cited Alden for several violations,

including neglect. Regulators said Alden didn't recognize 's illness,

assess him before sending him to school or promptly notify a doctor of his

condition.

They fined Alden $35,000 — the eighth fine against the facility in the last 10

years. As in some previous cases, Alden is contesting the citations and fine. A

hearing is scheduled for February.

In July, 's mother amended her lawsuit against Alden, changing it from a

simple neglect case over his broken arm in 2007 to a wrongful-death claim.

" If he would have stayed home with his mother, none of this would have

happened, " said Craig Manchik, an attorney representing 's family. His

mother agreed: " I could take care of him better. "

Moffitt said she worries that more children will be neglected at Alden. " How

many times does this have to happen before they close it down? " she asked.

" Who's responsible for doing that? "

The Illinois Department of Public Health, which oversees Alden and other

facilities for people with developmental disabilities, has " grave concerns " with

the facility and will shut it down if problems persist, said spokeswoman Melaney

Arnold. " There is never an excuse for a death due to negligence, " she said.

Moffitt has two keepsakes to remind her of . One is the memorial booklet

from his funeral, which she keeps in her desk drawer at school.

The other is the battered red tambourine the boy loved so much. Shortly after he

died, Moffitt pinned it to a bulletin board in her classroom.

It hangs there today, without note or explanation.

sroe@... jahopkins@...

Copyright © 2010, Chicago Tribune

Pam