Going the Distance

With the holidays here, Marcia Flannery did her best to make the motel room feel like home for her son, Page Dye. She set up a tiny Christmas tree and surrounded it with toy harmonicas, chocolate Santas and a dancing snowman that wiggled to a yuletide version of the twist.

She set out new slippers and a pair of her son’s favorite pajamas. But here at this Costa Mesa motor inn, hours from her Oxnard home, Flannery knew Page would eventually ask the question that always breaks her heart.

And he did.

“Momma, go home today?” asked Page, one of nearly 200 developmentally disabled patients transferred three years ago from Camarillo State Hospital to the Fairview Developmental Center in Orange County.

“Oh, honey, I wish you could come home,” Flannery answered. “This is our home now. It’s our motel home.”

For nearly three decades, Camarillo State Hospital was home to Flannery’s 60-year-old son, a white-haired man with the mind of a child and a fondness for cream soda and Lego building blocks.

It was for him, and hundreds of others, a sanctuary nestled at the foot of the Santa Monica Mountains, a nationally renowned institution boasting groundbreaking programs for both the mentally ill and developmentally disabled.

But in the face of skyrocketing costs for patient care and a nationwide trend toward small community care programs rather than mass housing at state institutions, then-Gov. Pete Wilson ordered Camarillo State Hospital shut down by mid-1997.

The closure rolled like a thunderclap across the hospital grounds.

Hundreds of longtime employees were thrown out of work, and a greater number of patients--700 at the beginning of 1997--were scattered to group homes and other facilities across the state.

The closure was perhaps hardest on the elderly parents of adult patients, such as 78-year-old parent Marcia Flannery.

Like others, she moved near the state hospital years ago so she could be closer to Page. And she was among those who waged a legal battle to keep the facility open, afraid any move might set back the progress he had made at Camarillo.

While Page has done well at Fairview, Flannery said the move has upended their lives.

Because the drive to Orange County can take several hours in heavy traffic, Flannery now sees Page on average once every two months, compared with once every couple of weeks when she was only 20 minutes away.

And she can no longer bring him home like she used to--instead, she is forced to grab a room at a nearby motel to spend quality time with him. More troubling is the prospect that because of her age and worsening health, she soon won’t be able to make the drive at all.

While planners work to transform the old state hospital into a state-of-the-art university, Flannery stresses that the conversion came at great cost. And she wants to somehow keep the spirit of the hospital alive, though much of it is quickly fading into memory.

“We have become a forgotten bunch,” she said. “But people should know we are still out here and some of us are having a tough time.”

A Top Institution and a Fiscal Burden

Camarillo State was not just some local hospital.

Opened in 1936, the Spanish-style complex housed nearly 7,300 patients at its peak and provided thousands of jobs for local residents, pumping millions of dollars a year into the Ventura County economy.

It was one of the preeminent mental institutions in the nation, featuring a range of cutting-edge research programs, including one that led to the widespread acceptance of the generation of drugs now used to treat schizophrenia.

It was a gold star facility, the largest of its kind in Southern California and the only one in the state treating the mentally ill and retarded on the same grounds.

But it had also become a financial burden, recording the highest costs in the state hospital system for patient care, an average of $114,000 a year per client.

Spurred too by a statewide push to care for mentally disabled patients in community programs, the hospital was targeted for closure in 1996 and mothballed the next year.

The closure sent many parents into an 11th-hour scramble to find new homes for their adult children, many of whom had lived at Camarillo for years or even decades.

“We all felt like it was a setback, for us of course, but more importantly for our kids,” said John Chase, whose daughter, Pam, was among those transferred to Fairview after 35 years at Camarillo.

A veteran advocate for the developmentally disabled, the 76-year-old West Hills resident served as spokesman for one of the hospital’s parent groups during the closure.

“The extent of [the setback] we don’t know,” he said. “But with very few exceptions, most parents I talk to say their children were not helped by being moved.”

As the clock ran out at Camarillo, Oxnard resident Gene West was among the parents who chose to pull out of the state hospital system altogether. West placed his son, Patrick, in an Oxnard group home months before the hospital shut down, unwilling to see him transferred far from home.

“He’s still there and he’s doing great,” West said of his 38-year-old son, who comes home once a week and on holidays. “It seems to have worked very smoothly.”

While various placements were found for former Camarillo State Hospital patients, a significant number simply shifted to other facilities within the state hospital system. No facility took a larger group than the Fairview Developmental Center.

Oxnard resident Rose Zachowski said other than not being able to see her son, Patrick, as often as she would like, the move has been good for him. Through intensive physical therapy, the 46-year-old is now able to get around with the help of a walker, whereas at Camarillo he had been confined to a wheelchair.

Moreover, Zachowski said her son has developed friendships and seems genuinely content.

“It’s actually been a time of resolution for me,” said Zachowski, 78. “Pat will probably outlive me, and I’ve come to accept the fact that he’s in a place where he’s really happy and has really grown independent of me. His family is the staff that takes care of him.”

Some Early Ideas Fell by the Wayside

Not every move went as smoothly. But at Fairview, administrators and staff members pride themselves on having worked hard to meet the needs of the Camarillo clients and of those who were already there.

Hospital spokesman Jeff Helfer said a lot of planning made the transition easier.

Early ideas, such as creation of a van pool to shuttle Camarillo parents to and from Orange County, fell by the wayside for lack of support, Helfer said. But other plans, such as grouping former Camarillo patients on the same units to ease anxiety, have worked well and remain in effect.

“I think what it did was actually enhance a lot of the services here at Fairview and give us an even better perspective on what we could provide,” Helfer said. “Obviously it has not been perfect, but overall I think it has worked out fairly well for most people.”

From where Marcia Flannery is sitting, in Room 125 of the Vagabond Inn just off the San Diego Freeway, the move has been far from perfect.

She has nothing bad to say about Fairview itself, noting that Page has flourished while at the facility. But her worst fears, on the ordeal it offered just to pay a visit, have been realized.

Because they are on a fixed income, Flannery and her 84-year-old husband, Michael, can’t afford to move closer. But the drive to Costa Mesa takes such a physical and emotional toll that they book two nights in a motel whenever they visit just so they can recover from the trip.

They have thought about hiring a driver, but can’t afford it. They considered taking the bus or a train, but because they always bring Page’s toys and the family dog--a sheltie named Mollie, who licks Page at every opportunity--that proved impractical.

Still, they never thought about moving Page to a group home closer to Oxnard, certain that such a facility could not provide the 24-hour structure and supervision Page needs.

So Flannery tries to make this motel room feel like home, spreading his Legos on the carpet and pouring him big tumblers of cream soda, all the while stroking his white hair and telling him he has the prettiest blue eyes she has ever seen.

“I do little things and he loves it,” Flannery said. “We try to do as much as we can in a motel room. He gets to spend all day with us and gets to do anything he wants to do.”

Of all the housing and treatment options available for the developmentally disabled, Flannery said, the state hospital is still the best for someone such as Page.

He has been institutionalized more than half his life, beginning at age 7 in Modesto. He lived under state care during an era when the hospitals were largely viewed as dumping grounds for the mentally ill and retarded, a time when straight jackets were euphemistically called “camisoles” and regularly used to restrain patients.

Page has had his share of bad experiences, Flannery said. But there have been great improvements in the state hospital system, she added. And it’s evident that Page has benefited from that progress.

If only the hospital weren’t so far from home.

“This is the hardest time for me, trying to make Christmas in a motel room and having him say, ‘Mother, take me home,’ ” Flannery said, now preparing his lunch--a TV dinner of meat loaf and mashed potatoes--so he could take a nap.

“But let’s face it, I know there’s going to be a day when I just can’t make it anymore,” she said. “I’ve started thinking he’s got to be happy here. I’ve got to make it work.”