LITTLE ROCK — Susan Fennell remembers it as "The Day." Ten years ago, she took her 6-year-old son, Alex, to live at the Conway Human Development Center.
Fennell drove the 30 miles from Little Rock to Conway feeling like thousands of other parents had before her, with tears in her eyes and an ache in her soul.
Her boy was profoundly mentally retarded and autistic. And she could no longer handle him.
By age 1, Alex was a magnet for disaster.
"If there was a dangerous situation, he was drawn to it with a fervor," she said. "It took every ounce of my energy to just keep him safe."
Alex did not sleep more than an hour or two at a time. "Every morning I would wake up and not know what his room would be like," she said. "He would open the window and push the screen out. So, we installed bars to keep him in.
"He would have feces and urine everywhere. On the walls. The floors. Himself. You would think a large animal had been in there," she said. "I had to remove the furniture from his room or he would dump it over on himself.
"The destruction never seemed to end. Alex tore up the woodwork, took the door off its hinges, punched holes in the Sheetrock. I had to put down industrial linoleum so he couldn't eat it."
The unrelenting stress was too much for her marriage, and soon she was divorced.
"I've seen this over and over from parents who had children with severe disabilities," she said. "Fathers just disappearing. They can't deal with it. There is just too much additional stress for relationships."
One day, Fennell was having her hair done when the hairdresser mentioned a client who had placed her child at the Conway center. Maybe, she suggested, Fennell should consider that.
"I thought, 'She must be a different kind of a mom than I am, because I could not do that.' I'm so glad I didn't say it out loud," Fennell said. "I think until you're at that point, until you are physically and mentally used up, you can't make that decision. "You can't even fathom making that decision."
But "I had another child, and he was becoming severely depressed because I had nothing left for him."
At her wit's end, she turned to the Conway center for help in 1992. She packed Alex's favorite video, Sleeping Beauty, and made a cheat sheet for the workers so they would be aware of his likes and dislikes.
"For a fraction of a second I thought, 'I want him at home more than anything in the world,' " Fennell said.
"But it was literally life or death for me. I couldn't take care of him at home any longer."
The move, she believes, saved Alex, too.
Ron and Pat Carmack were ecstatic when their first grandchild was born.
"For three days we were happy grandparents," Ron Carmack said. "Suddenly, something went terribly wrong. There were tremendous fevers."
Brett contracted meningitis and was eventually diagnosed with cerebral palsy.
The doctor's message was grim. "I don't think he's going to live through the night. But we're going to try."
Brett's life was saved. But his future was uncertain.
The Carmacks soon learned the overwhelming fears and frustrations common to families raising a disabled baby.
Brett couldn't sit up, dress himself or walk. He was incontinent. Giving him a bath as he grew older was like lifting a dead weight.
Yet, there were bright spots along the way.
"We were afraid that he wouldn't be able to swallow. He was on a liquid diet until he was 3 or 4 years old," said Pat Carmack. "Finally, he got to where he would swallow applesauce. And that was a miracle."
As Brett grew bigger, so did his problems. "We began to slowly realize that his life was deteriorating along with ours," Ron Carmack said. "When the day came that Mama couldn't pick Brett up again, she broke down," he said of his wife.
Ron Carmack first toured the Conway center after he learned that it had a special wheelchair shop. Because of various diseases, including curvature of the spine, many of the Conway center residents need to have their bodies encased in a custom chair to help them sit comfortably and correctly.
After several visits, the Carmacks placed Brett at the Conway center on Jan. 31, 1997. He was 12 years old.
In a matter of weeks, the center's staff had Brett sleeping in his first regular bed, not the oversized baby bed with rails he had used at home.
And the successes continued. "In a few months, he was feeding himself. We had never been able to do that," Ron Carmack said.
Before the Conway center, his family had tried everything.
"We've given Brett a home experience. We took Brett to an excellent day-care program. He's lived in a small residential facility," Carmack said, "And then we're here at the biggest residential facility in the state.
"And guess what? It's here where he blossomed."
Fennell eventually became president of the Conway Human Development Center's Parents Association.
Carmack became chairman of the Developmental Disabilities Services Board. Its seven members are appointed by the governor to oversee the state's six development centers.
But on the grounds of the Conway center, Fennell and the Carmacks are just proud parents and grandparents.
The Carmacks enjoy going to Sunday services in the chapel at the Conway center and sharing Brett's favorite lemon cake that Pat Carmack makes monthly. Or pushing Brett, now 18, on a specially adapted swing.
When he sees them, their presence elicits a gurgle of joy and a luminous smile.
Fennell's eyes glisten as she recounts the first time Alex, now 16, rode a tricycle by himself in the Conway center gymnasium.
"I had tried to teach him to ride for years. He loved to be pushed, but he couldn't figure out that foot action," she said. "I peeked in the window at the gym and saw him doing it himself, and I cried. I told his brother. I had to bring him up that next week so he could see it, too."
She recalls her doubts the first weeks at home without Alex.
"My greatest fear was he wouldn't feel OK. I remember driving home and praying, 'God, please give Alex peace in his heart.'
"His understanding of the world is so limited. If he has peace, that's all that matters."
But Fennell and the Carmacks now have other fears for their children.
The future for the developmentally disabled has changed dramatically since the Conway center became home to Alex and Brett.
New priorities that shift institutional funding to home care and a U.S. Supreme Court decision are dark clouds looming large over their lives.
Some parents at the Conway center contend that recent criticisms by state and federal regulators foreshadow an attempt to close the facility.
"That fear didn't come from the Twilight Zone," Ron Carmack said. "It comes from other states that have done it and from lawyers wanting to make a buck filing lawsuits to close institutions down.
"Our DDS Board supports providing funding and services so someone can stay at home as long as the system recognizes others can't stay at home."
The relatives are braced for an attack on the facility that they believe has given their children their only shot at life.
For 11 years, Little Rock attorney Bill Sherman and his wife, Carole, have watched national support for human development centers erode.
"We are fighting to preserve these places," he said, waving a fist over piles of research. "The state is freezing admission to the centers. They are cutting staff and trying to move residents out. And this awful, awful syndrome tends to cut quality and provide excuses to close these places down."
The Shermans' interest stems from 32-year-old son, John, who lives at the Arkadelphia Human Development Center.
John lived at home until he was 15 years old. He has a compulsion to swallow inedible things.
"Even with the most vigilant care, he will bend down and pick up a cigarette butt and with lightning speed, pop it in his mouth. If we are in the car and he is agitated, he will start destringing his socks to eat them," Carole Sherman said.
"When my son was young, I couldn't imagine putting him in an institution," Carole Sherman said. "Now he's as tall as his dad and weighs almost 200 pounds. On one day that I visit he is happy. On another day, it takes every bit of skill I have to maintain a visit."
The population of residents in large institutions peaked in 1967, according to statistics compiled in a federally funded study called, "The State of the States in Developmental Disabilities."
"There were class-action lawsuits in Alabama and Pennsylvania that got the federal government's attention concerning problems in large institutions for the developmentally disabled," said Richard Hemp, who has worked on the State of the States annual reports since 1983.
"Their first response was to improve the institutions," he said. "They tried. It took a number of years for the state and federal officials to realize that the wrong road had been taken. These institutions, as large as they were, were not changing."
In 1981, the Reagan administration amended the Medicaid law to curtail rising Medicaid costs by creating what was called a community-based waiver. Medicaid funds would now pay for some services for the disabled in their homes in the hope of cutting down on the costs of running large institutions.
Although services varied from state to state, families with disabled children were offered Medicaid money for costs including transportation to doctors or therapists, and to hire home-health aides to care for their children while parents worked. Small group homes sprang up in the communities so children could live near their parents.
With new options, families steered away from placing their children in large institutions.
States began to channel funding into the home programs and began to build community services to support those families. With less money and fewer clients, institutions were forced to downsize.
In 1991, New Hampshire became the first state to close all of its institutions. Today, nine states have no institutions, and admissions are frozen to facilities in 40 other states.
Arkansas has not followed the national downsizing trend for institutions. The Conway Human Development Center, for example, has 576 residents. There are approximately 1,200 residents among the six human development centers.
Besides Arkansas, the only state with more people per capita in human development centers is Mississippi.
The state's institutions flourished, in part, because Arkansas successfully pulled its disabled out of a federal class-action suit, Baldridge v. Clinton, that would have shut down the human development centers.
"They were talking about closing two or three of the centers down immediately and the rest by the end of the decade," said Sherman, who participated in writing the legal brief that persuaded a federal judge to allow Arkansas to withdraw from the suit.
In addition, the state did not apply to participate in the Medicaid community-based waiver funds until 1990. Some 500 Arkansas families received community-based waiver funds at that time.
The program and the services it offered developed slowly. By 1998, the community-based waiver budget was $12.8 million.
Today, four years later, 2,049 families are using community funds at a cost of $52 million. And there is a waiting list of 1,998. The names of about 40 more families are added to the list each month.
Nationally, community-based funding has surpassed funding for institutions.
By 1998, 72 percent of all spending for the developmentally disabled in the United States was devoted to community services.
To further complicate the situation, in 1999, the U.S. Supreme Court held in Olmstead v. L.C. that states must offer a range of services to the developmentally disabled.
Soon, each state began reacting to that decision by drawing up plans to place residents "in the most integrated settings possible," meaning integrated into communities.
So-called Olmstead lawsuits have been filed in seven states because services for those who want to live in the community have not developed quickly enough.
In Arkansas, people and organizations with an interest in the Olmstead decision kicked off a rancorous debate as advocates for the disabled who wish to live at home squared off against those supporting institutional care.
Each side felt threatened by the other. It is not merely a philosophical difference. With declining state revenue, each group is hoping to get the most out of a shrinking pot of money.
After a year of sometimes contentious meetings, an Olmstead report was written with recommendations for how Arkansas could develop a variety of living options for the disabled.
That report was turned over to the Governor's Integrated Services Task Force, consisting of families with disabled children, community providers, advocates for the disabled, and various state agencies.
After another year of meetings, a report is being prepared for the Legislature when it convenes early next year.
Gloria Gordon, who helped write the Arkansas Olmstead reports, said the fears that the human development centers will be closed are unfounded.
"None of us wants to close the centers," she said. "We want people to have a choice about where they live, and more importantly, where they die."
"It's been a battle, but we want there to be no losers when the report is completed," adds Cynthia Stone of The Arc, an association that supports people with mental retardation and their families.
"For those who require institutional care, we want them to have that. For those who don't, we want more options," she said.
Parents like the Shermans are doubtful, despite those assurances.
"The institutions are constantly under attack. Olmstead is the current vehicle, and it is being used as a sledgehammer to bring down the institutions," Sherman said.
He has represented families in lawsuits who have fought to keep institutions open in several other states.
"You have an army of caretakers in an institution. All their care is under one roof. When these places close, the people die. It's happened in other states," he said.
Carmack agreed that closing institutions puts the residents at risk.
The special infrastructure that the disabled need, from doctors to dentists to therapists, does not exist in the community, he said.
Families with disabled children at home, he warned, need to think ahead.
"What your loved one needs today, changes tomorrow," he said. "Your child may be in an institution, and they create a wonder drug and he gets better and goes home.
"But if his parents get older or get killed, or if the child weakens and gets medically fragile, you better hope there is a safety net and that the institution can take them back."
He grimaced. "I want to tell these people who insist institutions are big nasty places, 'Why don't you take your child, and leave my child alone? Please don't help me. Thank you very much.'
"Those who appoint themselves morally and intellectually superior and know without a shadow of a doubt what is right for your child - deliver me."
Carmack said the DDS Board supports a range of choices for developmentally disabled as proposed in the Olmstead recommendations. But, he conceded, the various groups are still wary of one another.
"Everybody is under a white flag," Ron Carmack said, "but we still have pistols tucked in our shoes."
Pat Carmack cried when she realized that Brett was missing his first day as a high school senior.
"Instead of going to high school, Brett was trying to learn one more word, or tell you he was hot or cold or that his diaper was pinching him," she said. "On the other hand, he has a rich, happy life. In Conway, he is at home, and he's loved."
Susan and Alex Fennell recently moved out of state. She cherishes his time at the Conway Human Development Center.
"I continue to be sad about having to make that decision [to place Alex there] and will live with that until I die. But I do not feel guilty. I never doubt that I made the right decision."
In her mind, she holds the image of the Alex who could have been. When Alex was 3 years old, she had a recurring dream. She was in a school on an upper floor that she knew was Heaven.
"A young man approached me. I was strongly drawn to him. I told him about Alex. He told me he used to be autistic.
"I looked down for a moment and when I looked up, I realized he was Alex."
Sunday:
A family's grief turn to action. 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. Deputy Editor Frank Fellone supervised this series.