Lauri Archambault and her son, Jared Taylor, at their home in Chepachet. Many families with developmentally disabled members are on long waiting lists for appropriate residential services.

The Providence Journal / Steve Szydlowski Steve Szydlowski

GLOCESTER — Lauri A. Archambault sits in her living room describing the rare disorder that left her son, Jared Taylor, severely mentally retarded and blind from birth. Now 26, Jared also suffers from osteoporosis, hormonal deficiencies, hypothyroidism and hypoglycemia. His growth has suffered, leaving him a 100-pound man who is 4 feet, 5 inches tall. He is prone to seizures.

“He has the cognitive ability of a 2- to 3-year-old,” Archambault says.

Jared, who has been lying quietly on the couch, stands and walks from view.

“All right, roamer, where are you going?” Archambault says.

Jared, whose vocabulary consists of about 50 words, including “cookie” and “supper,” doesn’t answer.

Archambault goes to find out what he’s up to, as she does countless times every day. Her son requires assistance in even the simplest activities, including using the bathroom, and she thinks he might be headed there. But something in the kitchen — one of the family dogs, perhaps? — has caught his attention. Archambault gently directs him back to the couch.

For more than a year and a half, Archambault and her husband, Mike, have been waiting for an appropriate residential placement and services for Jared, who spent much of his early life at Perkins School for the Blind in Watertown, Mass. At 22, he was discharged to a group home in Rhode Island run by Gateways to Change, a nonprofit company that the state placed on “conditional” license status on Sept. 2, 2005, after what an official called “an egregious case of neglect” at another Gateways home. (Gateways’ full license has since been restored.) Concerned by the quality of care Gateways provided — and what she maintains was improper treatment of Jared — Archambault removed her son on that Sept. 30.

“His health and safety were at risk,” she says. “I didn’t feel there was any other option but to bring him home.”

A few days later, Archambault applied to the state Department of Mental Health, Retardation and Hospitals for a new residential placement.

She’s still waiting.

Archambault hasn’t been able to work since Jared came home, leaving husband Mike, a construction worker, the sole bread-winner. Finances are tight. Jared is not getting the intensive services that would best allow him to flourish, and Archambault, who is in her mid-40s, is wearing out. “I feel like I’m 86,” she says. She worries what they would do if she became sick and Jared’s full care fell to Mike. “If anything happened to me,” she says, “Mike would have to quit his job.” They would be left without an income.

While Jared’s story may be distinct, his wait is not.

Nearly 350 developmentally disabled people are awaiting residential placement (not all in circumstances as pressing as Jared’s), according to the most recent MHRH tally. The list is symptomatic of a larger problem: Once a national model for its community-based services, Rhode Island finds itself at a crossroads a quarter of a century after it began to move people out of Exeter’s Ladd Center, which closed its doors in 1994 after nearly a century of warehousing people.

“We don’t have a full-enough continuum of options for people,” says Ellen R. Nelson, who inherited an aging system when she became MHRH director last year. “The group-home system was created when the Ladd Center was closed. It was a great accomplishment. But now, in 2007, we’re stuck in a post-institutional model too exclusively.”

“We’ve somewhat rested on our laurels — said, ‘Gee, we have the best services in the country,’ ” says Robert L. Carl Jr., chief executive officer of Woonsocket’s The Homestead Group, which operates residential and community programs for the developmentally disabled. In the 1980s, Carl was one of the chief architects of the community system (and, later, head of the Department of Administration under former Gov. Lincoln Almond).

“All of us who are in the business have an obligation to come up with better and more efficient ways of providing support to people,” Carl says. “We’ve got to be creative. I don’t think it’s easy, by the way.”

AN EMERGING ISSUE is the aging of the developmentally disabled population. To some extent, the community system that replaced Ladd was designed for the young and healthy. But like the general population, developmentally disabled people are living longer — and many are now entering a time of life when diabetes, cardiovascular disease, Alzheimer’s and other age-related disorders are prevalent.

Robert Comeau, 72, knows this well.

A retired autoworker who lives in Woonsocket, Comeau is the sole caregiver for his brother Butch, 67, now that their parents are both dead. Butch was born with Down syndrome — and more recently has been diagnosed with Alzheimer’s. His needs are intensifying, and meeting them increasingly exhausts his 72-year-old brother. Comeau’s sleep suffers. Except for occasional respite care, when a state-financed agency has charge of Butch, he can’t leave their house for long.

“I’m chief cook and bottle washer,” he says.

For almost a year, the Comeaus have waited for a residential placement. Robert’s been told that a group home in Greenville may have a bed soon, but nothing’s firm.

Butch sits in the living room as Comeau tells his story. Not too many years ago, he says, Butch would have been sociable. “He’d have said ‘hi’ and shaken hands with you.” This afternoon, Butch stares silently.

“He’s going quick,” Comeau says. “It’s like he’s dropping off a cliff.”

Comeau has bittersweet feelings about his brother’s eventual placement. “I’m going to miss him,” he says. “I’m going to be all alone here.” But he knows they can’t go on like this forever. Comeau has three grown children, but they have lives of their own and can only do so much for their uncle.

“I’m not 50 years old anymore,” says Comeau, who is widowed. “Eventually [without a residential placement] he’s going to put me in the hospital. I know that.”

NELSON HAS FORMED a committee to revise today’s residential system. Related internal studies are under way, and MHRH is working with outside agencies and other branches of government. It’s a daunting task: in these bleak budget days, resources are tight. A generation ago, voters approved several bonds and the state spent hundreds of millions of dollars to build the system, but that era is over.

“I don’t have pools of money that are being put into my account,” says Nelson. “What I’m trying to do is be ‘ultra-creative’ with our resources.”

One less-costly, innovative option under consideration is “shared living,” an adult foster-care arrangement in which qualified families would be paid to have a developmentally disabled person live with them; standards have been drafted and will soon be implemented, Nelson says. But other elements in a new system of care for the several thousand developmentally disabled people for whom MHRH is responsible remain to be designed.

“It’s going to be a more diversified model for sure,” Nelson says. “We’re trying to maintain people’s independence and allow them to live the most fulfilling life they can in the face of their disability.”

JARED TAYLOR’S primary diagnoses are septo-optic dysplasia, a congenital brain malformation that has left him blind and severely retarded, and panhypopituitarism, a pituitary gland malfunction that causes bone and growth disorders. Symptoms can be treated, to some degree, but there is no cure.

At Perkins, Jared’s mother says, the young man received an array of psychological, behavioral, speech and related services that enhanced his life. Nothing of the sort was provided when he returned to Rhode Island, Archambault says — and now, living at home, Jared and their family are pretty much on their own.

“They don’t have what he needs,” Archambault says. “And if they do, they’re not telling me.”

The state has offered residential placement — but the homes they have visited, Archambault says, are lacking. One was so dirty that she came away “disgusted.” None was equipped to offer extensive services, she says.

As she waits, Archambault “banks” the respite-care hours the state provides. She could use them for vacation — but she is saving them in the event she falls sick. The 180 hours she has accumulated so far would allow her husband to work 18 10-hour days while she recovered and a state-financed agency took care of Jared.

“He’s a little peanut. He’ll never be able to be left alone. He can’t go outside by himself. This is my mission.”

gwmiller@projo.com