Donna Watts sat near her son's grave. It was a brisk January day, but she was barely aware of the cold air brushing her cheeks.
She could only concentrate on what lay beneath the small plot of ground.
She gently placed a statue of an angel on the grave. The angel's wings spread wide, a book open in its hand. A bird, a squirrel and a rabbit nestled at the angel's feet, heads cocked, as if listening to a story.
"Hey big boy," she whispered to her late 18-year-old son, JR. "How are you today? What's mama's boy doing?" Watts had something to tell him.
"JR, this is it. Your dad and I have done all that we can. We can't spend the rest of our lives battling this."
For a brief moment, perhaps the only time in the nine months since her son had died, she felt a sense of calm.
Two days earlier Watts and JR's father, Ray Lawless, had testified at the Senate Public Health subcommittee investigating problems at the Conway Human Development Center.
Theirs was a public display of private pain.
JR had lived for seven months at the Conway center. His parents said they had watched him deteriorate during that time. They had pulled him out in January 2001 and placed him at the Benton Services Center, a state-run nursing home now called the Arkansas Health Center.
JR died April 6, 2001. He was buried in his favorite bright blue fishing shirt, holding his Pooh Bear and wrapped in his blueand-gold Pokemon blanket.
But the questions about his stay at the Conway center had not been buried with him.
His parents had embarked on a year-long odyssey that finally took them to Room 130 at the Capitol.
"I recognize the need to have human development centers like we have in Arkansas," Watts told the subcommittee before a crowded room, "but I also recognize the need for them to be run properly."
JR's father, Ray Lawless, picked up the story as Watts, his ex-wife, broke down in tears.
"I had my son at home for five-anda-half years by myself. I took care of him. He was in the hospital one time for viral pneumonia."
In contrast, during his short stay at the Conway facility, JR had been hospitalized six times with pneumonia and his feeding tube was replaced 11 times, Lawless said.
Sen. Percy Malone, D-Arkadelphia, was chairman of the subcommittee. He warned the Developmental Disabilities Services Board and the state Department of Human Services that problems at the center must be fixed. Those entities share supervision of the six human development centers.
"The hearing brought some resolution," Watts said later. "We were determined to see that JR's death was not in vain. I felt like it was time for someone else to do what needs to be done."
So, on that winter's day, she told her son that they had fought the good fight. And now she was at peace.
The sense of serenity she felt sitting near JR's grave was fleeting.
Through records obtained under the state Freedom of Information Act, the couple continued to find what they believe are discrepancies in his care. In their quest to determine what happened to JR, they have goaded state and federal investigators into action.
Their concerns include: Did the center transfer JR and others to the hospital quickly enough?
Did the center give JR the appropriate medication to stop his seizures?
The couple carried these questions - and others - from agency to agency. In February, 2001, the state Office of Long Term Care cited the Conway center regarding JR's medical treatment.
That was only the beginning. Watts and Lawless, with help from a Conway center employee, provided the state with a check list of allegations that ultimately would lead to more state investigations, three federal investigations, and a special report on medical care by the University of Arkansas for Medical Sciences.
Today, they look back and wonder why their son died. And if it could have been prevented.
"I should have caught on sooner," Lawless said. "I wish I had. Maybe my son would still be alive."
Stephanie Watts remembers waking up one morning when she was 5 years old and hearing the urgent beeping of her baby brother's feeding machine, indicating the bags were empty.
Stephanie was two years older than JR and devoted to him.
"My parents were exhausted from working and taking care of him," she said. "I turned the machine off and I picked JR up and held him.
"My parents found us asleep. I was holding him under his crib in my pink bathrobe. They took a picture and I still have it."
She has no memories of the initial shock when her parents discovered that their son was profoundly mentally retarded and would require 24-hour care for the rest of his life.
JR was born Everett Ray Lawless Jr., on Feb. 23, 1983. From the beginning, he developed much more slowly than his older sister.
"JR was not able to sit up or roll over. He was very large," Donna Watts said. "The first pediatrician told me not to compare them. He was just a fat, lazy baby."
Ray Lawless was in the Army's 101 st Airborne Division at that time. When doctors could not explain why JR was constantly sick and not walking or talking, the Army transferred the baby to specialists at various military hospitals around the country.
For JR's first birthday, Watts decorated the hospital ward where JR had gone for another round of diagnostic tests. She placed balloons on JR's crib and served cake to the other families on the ward.
The party broke up when the doctor arrived. He was blunt: JR would never be any more than that diapered baby lying helpless in the crib.
"You need to go on with your life. It would be better for you and your family if you left him here with us and went back home and forgot about him," he told them.
The diagnosis was complex. Profound mental retardation, profound deafness, cortical blindness, seizure disorders and spastic quadriplegia - meaning his body muscles tightened, drew in and retracted.
JR was not expected to live to his fourth birthday.
"We never gave up on him," Watts said. "We always felt that this is our child. He deserved a chance to be whatever he could be, regardless of what anybody else thought."
JR started special education and physical therapy when he was 15 months old. Although his body's growth was stunted, his personality shone through.
Stephanie Watts loved spending time with her little brother. "He would play possum. He would close his eyes like he was asleep, open them and then close them real fast and giggle."
The family moved to Arkansas in 1986. Doctors and crises became a way of life. And still JR survived.
"It didn't matter what hospital we went into, we could always find somebody else that was worse off than he was," Lawless said. "It made us feel lucky to have him.
"You know when you curse God because you have no shoes, then He shows you someone with no feet."
JR needed constant attention and his parents placed him in a pediatric facility. By 1988, the couple had divorced, but JR and Stephanie were the glue that kept them in touch.
Lawless retired after 20 years in the Army and became a real estate consultant.
He thoroughly enjoyed spending time with his boy.
"JR was so great. When you'd come into his room and say, 'Hi,' he'd get what I called his little Elvis grin. He had his problems, but he could recognize people and his face would light up."
Unhappy with JR's treatment at the pediatric facility, Lawless took his son to live with him in 1994. He used a community-based waiver that provides Medicaid funds for families who want to keep their disabled children out of institutions to hire a series of home health aides to assist him.
Eventually, the high turnover in home care workers and the inability to find qualified help wore Lawless down. One nurse, he said, even stole JR's drugs and overdosed on them. JR's continual needs grew to be too much.
On May 31, 2000, JR went to live at the Conway Human Development Center.
"We wanted his basic needs to be met. We wanted a safe environment and appropriate medical care," Watts said. "We didn't expect them to love him like we did. But we did expect them to take care of him."
Four months after JR moved to the Conway center, Watts was at odds with the staff over her son's care.
JR's face, clear when he arrived at the facility, was blistered with acne. His feeding tube seemed to be constantly obstructed and had to be replaced. He had respiratory problems, seizures and pneumonia.
"Sometimes, I went into the facility and sat in his room without checking in at the front desk. He was supposed to be turned every two hours so his lungs would not fill up.
"I was there for hours and no one came in. I had to go get someone to turn him," she said. "What if I had not been there?" Some of the staff, she said, fought back after she complained. She and Lawless had given the facility copies of the divorce court's order giving them joint custody of JR.
But because JR was approaching his 18th birthday, the facility told the parents they needed one of them to be appointed guardian.
According to Lawless, he signed the guardianship papers but told the facility he and his ex-wife made all decisions together.
One night when JR was in the infirmary, Watts was told by phone that she could not see her son because she was not the guardian.
After several conversations with a facility night supervisor, she was allowed to see her son.
"Staff told me privately that they were not to talk to me about JR or they would be written up. I was treated like an overprotective mother who was meddling," said Watts. "I was livid. I gave birth to that boy."
The dispute over JR's care came to a head Oct. 12, 2001. Watts was driving home from work, but she couldn't escape the feeling something was wrong with her son.
She called the boy's unit and a life skills trainer told her JR was in pain. He held up the phone and Watts could hear JR moaning loudly in the background.
Watts raced to the center. She wanted her son transferred to a hospital.
But she was not the guardian. She contacted Lawless, who called for Medical Director Dr. Denise Thomas, who had already gone home. Watts slept in the infirmary beside her son all night.
The next morning, Thomas had still not returned calls to Lawless, Watts said. Watts said she confronted Thomas, insisting JR was too sick to remain at the Conway center. Finally, after conferring with the father, Thomas agreed to transport JR to Arkansas Children's Hospital.
"We'll go ahead and ship him, but there's no guarantee that they will admit him," Watts quoted Thomas. "There's nothing wrong with him. We're doing you a favor."
Thomas has declined repeated requests for an interview.
Watts climbed into her Mustang GT and started to follow the ambulance.
By the time they approached Interstate 40, the sirens and lights were on. Watts couldn't keep up with the ambulance.
When she arrived at the hospital, she saw the emergency medical technician who had loaded her son into the vehicle.
What happened? she asked.
"I did not want your son to die in my ambulance," he responded.
JR had pneumonia and remained in the hospital for 10 days, according to hospital records.
With no options available, Lawless returned JR to Conway, determined to watch him closely.
Doctor's orders from Children's Hospital included specific instructions about JR's seizure medication.
On Jan. 4, JR had another crisis. It would not only change his life, but those of other Conway center families.
In January, JR was in the infirmary and Watts called to see how he was doing.
Licensed practical nurse JoAnn Brewer Wiley answered the phone. JR had been discharged from the infirmary back to 1 Willow, the unit for medically fragile men.
But Wiley suggested that Watts might want to come to the center. Again, Watts could hear JR moaning in the background.
"That was unusual for JR," Wiley said. "When he does that, he's trying to tell you he's in pain."
JR had a fever, Wiley told his mother, and his face and shoulders were swollen.
"He had respiratory difficulty and seizures. The swelling was traveling to his neck and shoulders and he had sweat beading off of him," Wiley said.
Wiley said she hesitated to talk with Watts. "She had been portrayed as a nut case and we were told not to have a lot of communication with her," Wiley said.
Watts found herself in the same dilemma as before - she wanted her son transferred to the hospital. She called a doctor in the emergency room at Children's Hospital and he agreed to admit JR.
JR had pneumonia and was dehydrated.
"He had multiple seizures the day prior to admission, lasting 50 seconds to 2 1/2 minutes," the hospital discharge records stated.
Both Watts and Lawless began calling on regulatory agencies, demanding they look into the center.
One of their first stops was at David Fray's office, the director of the Developmental Disabilities Services Division.
"They were the first parents who ever came in and complained about medical care," Fray said. "This was not normal. All my contacts with parents from Conway were glowing."
Watts and Lawless were adamant that JR was not returning to Conway. Fray helped them make application to be admitted to Benton Services Center.
JR stayed at Children's Hospital from Jan. 5 until Jan. 25 when he was transferred to Benton.
But Fray obtained a document from Lawless that also troubled him. It was an 18-page letter written by nurse Wiley outlining specific medical practices at the Conway center. Fray turned it over to the Office of Long Term Care to investigate.
Watts and Lawless stopped by the attorney general's office. They were told there was a priority list. JR's case was not high enough to be investigated at that time.
They called the governor's office, the state police and legislators in Arkansas and Washington, D.C.
On Feb. 22, 2001, the Office of Long Term Care cited Conway under its "Physician Services" deficiency section.
"Client experienced preventable seizure activity from 8/15/00 until 10/06/00 [when he was in Children's Hospital] and from 10/23/00 until after his hospitalization on 1/5/01."
"The HDC failed to act on a hospital discharge summary which informed the HDC that a change in JR's feeding tube site would likely require a higher dose of Tegretol to control seizures," the state investigation noted.
Tegretol levels were at 2.4, below the normal range of 6-8, the state wrote.
The parents were additionally stunned by nursing notations included in the state investigation.
While Wiley was documenting fever and seizures, the RN was documenting "client asleep, (no) respiratory distress, (no) significant discomfort, (no) loud vocalization and (no) indication of pain at this time."
On March 6, 2001, Thomas wrote to Conway center superintendent Bob Clark: "After reviewing the medical record once again and conferring with Dr. [name deleted], the consulting neurologist, it is still my opinion that this client received appropriate treatment.
"His low seizure activity along with the subtherapeutic Tegretol level indicated to me, in my clinical judgment at the time, that no changes needed to be made in his Tegretol dosage. We should treat the patient and not the level " On April 3, JR had another crisis and was admitted to Children's Hospital.
"I told him he would soon be going fishing with grandpa and the guardian angels," Stephanie Watts recalled. "I said he would get to walk and talk and do the things he couldn't do in this world."
She asked him for one final favor. "Bubba, tell mom it's okay to let go of you. Tell mom in your own way."
She turned at the door for one last look. "He played the game. He played possum. He turned and giggled at me. He did it three times," she said. "I walked out. I knew I'd never see him again."
A few minutes later, on April 6, 2001, JR died.
The Conway center had appealed the citation at an Informal Dispute Resolution with the Long Term Care Office.
On April 9, the citation was upheld.
That same morning, JR was buried and federal investigators arrived at Conway.
In the past 16 months, more reports on the disputed Tegretol level have been written.
On Aug. 10, 2001, Dr. Tyrone Lee wrote superintendent Clark that JR's "care was meticulous and followed the expected norm of medical treatment for his various conditions."
On Dec. 8, 2001, Mark Wilson, a nurse from UAMS, wrote, "Probably the patient should have had the Tegretol levels and liver function tests checked and if the latter were reassuring then it might have been wise to try to increase the Tegretol level about 8 or even up to 12, if and only if, seizures persisted."
Dr. Stephen Bates, associate professor of pediatrics and neurology at UAMS, wrote in January: "I cannot find any specific instances of mismanagement, which either by commission or omission, at CHDC directly contributed to his demise."
Watts and Lawless are not convinced. They continued to review JR's files and insist that the issues they disputed could eventually hurt other center residents.
"I don't want someone else to have to bury their child like we did," Watts wrote legislators after the Jan. 8, 2002 hearing.
Questions about medical care in other cases have surfaced in investigative reports since JR's death. The issues are similar to what Watts and Lawless saw in their son's case.
The issue of delay in transferring patients to a hospital was discussed in the UAMS report in May 2001, although that report did not address JR's case.
Staff physicians "feel uncomfortable with the level of medical [conditions ] of some patients in the Infirmary," the report stated.
The report called for a special program "to ensure that patients who meet hospital admission criteria are appropriately transferred to the hospital."
"Patient transfers, referrals and admissions are often more of an individual-physician initiative rather than following a defined previously agreed upon set of criteria."
On April 17, 2002 consultant M. Catherine Lyon reviewed 10 deaths, not including JR's.
Concerning a death in February she wrote: "There is no documentation to explain why the client's condition during his final medical decline did not warrant admission to the Infirmary or an acute care facility."
The Long Term Care Office has also been critical of recent medical decisions at the Conway center.
On Feb. 13, 2002, the Long Term Care Office cited Conway under "nursing services."
"The facility failed to ensure the physician was immediately notified of a significant change in condition for two of three clients," investigators wrote.
Both residents, who died last year, were sent to the hospital with pneumonia. One died later that day. Another resident died two days later.
The report does not link the delays to the deaths.
"The question is, would the doctor have changed his orders had he been given an update?" asked Carol Shockley, director of the Long Term Care Office.
And in a report June 17, 2002, the Conway center was cited again for failure to contact a doctor when a significant change in condition occurred.
In that case, a woman began to have seizures. She was moved to the infirmary.
Three days later, the seizures began one after the other: 9:40 a.m., 9:57 a.m., 10:15 a.m., 10:45 a.m., 11:15 a.m.
One lasted four minutes and 35 seconds.
"She had not had a seizure for six months and on this one day, she has that many," Shockley said, explaining that the doctors should have been called. The patient died two hours after reaching the hospital.
Donna Watts and Ray Lawless have watched the reports issued by state and federal investigators and still wonder if much has changed at the Conway center since JR lived there.
Watts is tired of the battles and what she perceives as too-little-toolate reactions from state and federal officials.
"It not that I want people to feel sorry for me or feel sorry for JR," Watts said. "But someone has to listen. These new state investigations are the same kind of warnings we gave everyone a year ago. Somehow, something has to change."
What does she want?
"I'd like to be able to go to bed at night and not wake up in a cold sweat seeing him as he died," she said.
"I want to be at peace knowing his death made a difference. And then I will be able to see JR as he used to be."
Lawless wonders if their year of agony, of trying to get agencies and legislators and regulators to listen, will ultimately protect someone else's child.
"Change doesn't mean you have to close the place down," he said. "It means you do things differently and stop warehousing those people.
"The place is frozen in time."
End of a Series Deputy Editor Frank Fellone supervised this series.
Research assistance for this series was provided by Brenda Looper, Dauphne Trenholm, Angie Young and Chris Spencer.
Series editors include J.J.
Thompson, Bill Simmons, Griffin Smith, Frank Fellone, Sandra Tyler and Denise Dorton.
Barry Arthur was the photo editor. Doug Grimsley and Matt Spence were page designers. Kirk Montgomery directed the graphics.
Photographers include Staton Breidenthal, Stephen Thornton, Karen E. Segrave and Benjamin Krain.
Copyright © 2002, Arkansas Democrat-Gazette, Inc. All rights reserved.