A Dying Institution

It wasn’t easy to care for a family member with intellectual disabilities in the 1950s. Some things have changed—but it’s still not easy today.

Once upon a time, I had a baby and everything was fine—until it wasn't.

That didn't take long. It was all high fives and congratulations in the operating room, but later I learned that as soon as the doctor pulled Sophie out of me, my husband Ray noticed that this baby looked different than our older daughter, Annabelle, born two years earlier.

"I think Sophie might have Down syndrome," Ray told me when we were alone in the recovery room.

click to enlarge A Dying Institution
courtesy of Fay Arrington
The Arrington family, Top from left: Duke, Blinda. Bottom: the twins, Fay, Darla Kay.

She did. By the time we left the hospital five days later, Sophie had both the official Trisomy 21 diagnosis (so-called because Down syndrome is a genetic condition that occurs when a third 21st chromosome appears during conception) and a referral to a pediatric cardiologist for a heart defect.

There were plenty of fears and tears, and so many questions, but we knew one thing for sure: This baby was coming home with us. No one questioned it or suggested otherwise. That's how it worked in 2003, and that's how it works today.

A generation earlier, it might have been a different story. Chances are, Sophie would have been sent to live on the outskirts of the town of Coolidge, at a state-run institution called the Arizona Children's Colony.

Maybe that's why Coolidge—as the place is shorthanded, people also call it Randolph House after an even smaller neighboring town—has long been a preoccupation of mine. I've visited several times over the years since Sophie was born, trying to imagine what it would have been like to drop her off there, what her life would have been like. How often would Ray, Annabelle and I have made the 50-mile drive from our home in Tempe to visit? Would Sophie still have learned to walk and talk, read and write, dance and sing? Would she have been safe? Happy?

They haven't placed a child at the Children's Colony in decades. It's been renamed the Arizona Training Program and according to state officials, no one new has gone to live there in years. According to the state Department of Economic Security, the population is down to 76 (down from 82 the last time I visited, in early 2018) and when the last resident dies, ATP will close.

That might not take so long. Coolidge has become an old folks' home. The residents, who are 60-something and up, have brain injuries, cerebral palsy, Down syndrome and other intellectual disabilities. Most are medically fragile, requiring round-the-clock care and help with the most basic of needs. Some have never known another home.

State legislators and advocates for the intellectually disabled have tried for years to close Coolidge. A small but vocal group of family members have fought to keep it open.

click to enlarge A Dying Institution
Patrick Bryant

I get both sides of the argument. The facility is located near a small, rundown town on the way to nothing but the state prison in Florence, and it hardly offers the integrated community approach considered de rigeur today. As a parent who was trained from the moment of diagnosis to fight for integration and inclusion at every turn, the notion of institutionalizing Sophie is unthinkable.

But I have the luxury of having had a child with a disability in the 21st century, at a time when things are far from perfect but light years better than they were in 1952, the year the Arizona Children's Colony opened its doors.

At least that was my assumption up until this past New Year's Day, when I woke to the news that a woman living at a Phoenix facility for people with intellectual disabilities had given birth to a full-term baby boy. A caregiver at Hacienda Health Care was arrested and charged with rape. The mother, 29 at the time, has a seizure disorder. She responds to some stimuli, according to her attorney. She doesn't walk or talk. When faced with a man who wanted to have sex with her, she could not have offered her consent—or cried for help. Later police reports indicate that she was abused over a long stretch of time. This might not have been her first pregnancy.

This is the kind of shit that keeps me up at night because even though she's at home with Ray and me now, someday Sophie might want to live on her own. And even if she doesn't (at 16, her main goal in life is to sleep in our bed every night), the day will definitely arrive when Ray and I simply aren't around anymore. This is complicated by the fact that every person with Down syndrome is genetically pre-disposed to early-onset Alzheimer's disease. I don't like to commit the words to paper, but the truth is that there's a very real possibility that by the time she is in her late 30s, Sophie will require the kind of round-the-clock care that the people at Coolidge receive.

So I've started—very slowly—to look for places where Sophie might live one day. Like Goldilocks, I've got problems with all the options. I don't like the intermediate care facilities like Hacienda and Coolidge, but I'm also not so sure about the smaller settings many advocates prefer, or the expensive, segregated communities that are popping up.

And I've got more empathy than ever for a mom named Fay Arrington, who never had much of a choice at all.

click to enlarge A Dying Institution
Patrick Bryant

Once upon a time, Ardella Fay Arrington had twin baby boys, and everything was fine—until it wasn't.

Fay married Norman when she was 17, a few months short of her high school graduation. He gave her a $4 ring; she got her a diploma. He became a police officer and she got pregnant with their oldest child, a girl named Blinda. When the twins arrived, Norman's colleagues cheered at the news of so much testosterone. The local paper wrote a story about "double trouble"—twin boys for a local cop!

No one guessed that real trouble loomed. In 1949, cerebral palsy was not a common diagnosis.

Like my husband, Fay noticed right away that Darrel and Dorrel weren't like their older sister. But it took Fay months to find out why. The doctors kept the babies in the hospital for 10 days to try to get them to eat. When that didn't work, they sent them home to die.

Fay wasn't going to have any of that.

Blinda says her mother is starting to forget things, but Fay recalls an awful lot from those days. The three of us spent hours on Fay's porch on a mild spring day in March 2018. Blinda was on spring break from her teaching job. She's past 70, still working full time. Neither woman looks her age. Fay has cheekbones for days, snow white hair and a regal manner. But she can laugh at herself. Blinda is funny, too, and clearly so capable. She moved in with her mother recently to help around the house and jokes about the "honey do" list she needs to get to when I leave. Her mother wants to plant a grapevine today.

click to enlarge A Dying Institution
Patrick Bryant

The house is tiny, clean and worn, packed floor to ceiling with family photos, scrapbooks and the results of Fay's efforts to trace her genealogy to the 17th century. She's got small leather boxes filled with keepsakes from each of her five children: photos of the twins, baby shoes, a doll that belonged to her fourth child, Darla Kay, birth certificates and written blessings from church officials.

"I'm telling you, this is our museum," Blinda says under her breath, shaking her head and gesturing around the small living room. "But you know what, if I was her age I guess I'd want it all out in front of me, too. Why pack it away?"

In a handwritten journal, Fay has documented her efforts to find a diagnosis for her boys—she drove to Missouri, Tucson and Salt Lake City to have the infants seen by doctors. She even went to an Oral Roberts revival, although the family is Mormon. In Utah she got in a car accident, breaking an ankle but managing to climb out of a ravine to safety. Fay's sister was with her; she saved the babies.

The doctors told Fay she'd never walk right again. Out of instinct, she says, she put on high heels that stretched her ankle and healed herself.

But she couldn't figure out what was wrong with her babies. Finally, the boys were diagnosed with cerebral palsy by a doctor in Phoenix. There wasn't much in the way of treatment. Again, the twins became ill and again, the doctor asked Fay, "Do you want to let them die?" She did not.

click to enlarge A Dying Institution
Patrick Bryant
The twins

Norman couldn't handle the thought—let alone the reality—of weak boys. No one from the church came to help. For a while, Fay's only assistant was her toddler, Blinda. She'd leave the crying babies in her care to run to the grocery store.

When Fay realized she couldn't care for the babies by herself, she sent them to a medical facility in Phoenix, but the staff there called at midnight one night and told her to come and get them. The boys wouldn't stop crying. Someone told her to put them in the Arizona State Hospital (at the time, ASH accepted people with intellectual disabilities as well as mental illness), but Fay had a friend who worked there and she'd heard stories.

When the boys were 3, she learned that a new institution was opening south of Phoenix. She used Norman's connections to get them in. That first day, Fay remembers, the Arizona Children's Colony took in 12 kids. There were so many families trying to get a spot, she says. "It had to be thousands."

The floors were cement and the metal beds were in rows, but Fay was desperate. She was pregnant again.

She didn't worry about the new baby. "I figured I'd already had my handicapped children," she says.

click to enlarge A Dying Institution
Patrick Bryant
Darla Kay Arrington

Like the twins, Darla Kay was born full term at an average weight. But her head was small and she didn't have a soft spot on her skull, Blinda recalls. The diagnosis: microcephaly.

Darla Kay's health struggles were too much for Norman.

"It hurt him so bad with the twins," Fay says. "He came and got Darla Kay one day, took her for a ride, and I didn't think nothing about it. When he came back he says, 'You know, there's something I want to tell you. I just about run us both off the cliff in Globe.' But then he said, 'I changed my mind.' I said, 'Thank the good lord you changed your mind.'"

Darla Kay was about 9 when she went to live at Coolidge.

Fay had one more child, a boy named Duke. His health was unremarkable, though she worried constantly through that pregnancy.

Fay and Norman divorced and she went on to marry three more times. None of the marriages took. Blinda reminds her mom of the years she spent wrapping meat during the day and ironing shirts for hire at night, watching Liberace on TV.

At the end of Norman's life, several years ago, he was so sick he couldn't talk and there were tubes everywhere, Fay recalls. He was like his children, she says. Fay and Blinda went to visit him.

"I said, 'Goodbye,'" Fay says. "He tried to tell me something and I just reached over and kissed him on his old bald head and said, 'That's okay Norman, everything's fine.' I said, 'I forgive you.'

"And he died."

Norman and Fay's son, Dorrel Ray Arrington, passed away from complications related to pneumonia on March 19, 2011, 59 years to the day that he came to live at Coolidge.

Blinda spoke at his funeral.

"The boys were always together," she said, "sharing a room where they were often overheard 'twin babbling' during the night. They have always been each other's best friends....Throughout the years our family has had many celebrations at Randolph House, birthdays, reunions, dances, Halloween and Christmas celebrations. Their nieces, nephews and cousins have all been involved in their lives, crawling over, under and hiding behind their wheelchairs which delighted them no end.

"Although they were so alike Dorrel did have his own unique personality. He had a glint in his eye that exposed a mischievous side. Matter of fact, my nickname for him is 'ornery boy.' He was known to pinch the ladies if they came within reach and he had such a happy, joyous laugh. He loved to hit and play with his toys and if you gave him Darrel's by mistake he was not happy."

click to enlarge A Dying Institution
Patrick Bryant
Darrel Arrington is the last surviving original resident of the Arizona Children’s Colony.

Darrel is now the only remaining original resident from the Arizona Children's Colony.

Fay and Blinda have visited Coolidge just about every week for decades. The grounds are expansive and green, with simple brown, one-story brick buildings. Blinda brings a bag of hard candy each time, handing it piece by piece to one of her favorite longtime residents, a man named Charlie, who knows to come looking for her. She calls the residents "kids," though she laughs and shakes her head, realizing that's far from true. The residents here don't get many visitors, Blinda says, so she tries to befriend as many as she can.

Blinda's brother and sister can't eat candy. Their medical files, which Fay has shared with me, are bulging with notes about the exact thickness of liquids to be ingested, the various surgeries and medical procedures Darla Kay and Darrel have undergone over the years, and specific instructions about everything from the placement of pillows to the repositioning of limbs to avoid bedsores and infection. At the end of one of Darrel's reports, someone wrote, "Likes looking at self in mirror."

It appears as though Darrel and Darla Kay are receiving good care. I've met them several times when I've accompanied the Arrington family on visits, and they appear well. But I'll be honest. I'm not so sure that it's possible to tell for sure. Not in the state of Arizona, not with any vulnerable person in the care of the state or a private facility.

In August, a legislative study committee met for the first time to discuss what needs to change to prevent future incidents like the rape at Hacienda HealthCare. Rep. Jennifer Longdon, a freshman Democrat from Phoenix, is chairing the committee. Members include stakeholders from state agencies that provide care for vulnerable adults in the state, including those who live at Coolidge.

"When these incidents came to light and caused you to examine your own perspective on this wheel, what did you discover for the good and for the bad?" Longdon asked in her introductory remarks. "Based on that, what changes have you made? And what do you feel you still need to do, and lastly what do you need from the Arizona Legislature to get that done?"

click to enlarge A Dying Institution
Patrick Bryant

Representatives from the state Department of Economic Security, Department of Health Services, Arizona Health Care Cost Containment System (the state's Medicaid program) and Adult Protective Services spoke. None of Longdon's questions were answered and the only thing that was clear by the end of the meeting is that it's impossible to figure out who's actually responsible for monitoring care for and investigating complaints about the state's most vulnerable residents.

I'm not even sure anyone could make an effective flow chart that demonstrates the amount of buck passing and obfuscating that have pretty clearly been built into the system over the years.

Longdon has her work cut out for her.

We know this from what we learned from Hacienda HealthCare, which is still open (pending an appeal) despite reports of mistreatment of patients on top of what happened to the woman who was raped. I know it from the families of adult children who say their loved ones have been mistreated in group homes, families who are terrified to speak out for fear of losing services. I have heard it from families who care for children with intellectual disabilities in their own homes and struggle to get basic care.

And this is in a state that routinely tops the charts in national surveys of the places that provide the best care for people with intellectual and developmental disabilities.

Ultimately, from what I can tell, whether you are in an institution or at home—or somewhere in between—for now in the state of Arizona (and maybe anyplace else in the country, for that matter) it comes down to family. As long as my husband and I monitor Sophie and ask a lot of questions of her doctors, caregivers and teachers, we have a fighting chance of keeping her safe and healthy. Ditto for Fay Arrington.

click to enlarge A Dying Institution
Patrick Bryant
Darrel, Fay and Darla Kay Arrington during one of Fay’s frequent visits to Coolidge.

And after that, as much as I hate to say it, the responsibility falls to Blinda, Duke—and my Annabelle.

The Arizona Training Program really is a dying institution. Not only will the place shut its doors when the last resident passes away, the whole notion of a large-scale, isolated facility for people with intellectual disabilities is becoming a thing of the past. Similar places have closed all over the country.

As much as she loves Coolidge and thinks it's the right place for her brother and sister, even Blinda Mills understands that. She teaches special education at an elementary school in Queen Creek. Her students have a range of disabilities, including autism, and one of her favorites reminds her of her twin brothers.

"He's not as contorted, but he's on a vent, he's on a feeding tube. He has seizures all day long," she says. She loves to try to get him to smile, and figure out ways to use an iPad to catch his attention.

Blinda thinks this boy will someday be a candidate for an institution—if there's one around by then.

"Right now, see, he is getting the love from his family and he knows who they are," she says. "So that is one thing, but what's going to happen when those parents get older, or something happens. Are the siblings going to take over, or not at that point?"

I wanted to meet this student, so I drove out to Queen Creek one day to observe Blinda's class. He was home sick. He misses a lot of school.

Fay and Blinda know there's a chance that Coolidge will close before Darrel and Darla Kay pass away. Every time a resident dies, the costs of maintaining the facility increase, and both budget-conscious legislators and reform-minded advocates are gunning for the place.

And if it happens?

"We would bring them here," Blinda says.

"Yes we would," Fay agrees.

I look around the house—at the narrow door frames, uneven surfaces, all the clutter—and at Fay, and wonder how that could possibly happen.

This summer, I had lunch with an old friend. I hadn't seen her in years and we had a lot to catch up on. We've each sent a kid off to college, and this woman also has another child who has Down syndrome. Her son also has autism and a medical condition that requires constant monitoring. He finishes high school soon, and she and her husband have started looking at housing options.

click to enlarge A Dying Institution
Courtesy photo
A college of images of the Arrington family.

Like me, she hasn't found anything suitable, which scares me because she's been trying a lot harder than I have. A new crop of communities is popping up, housing for rich people with intellectual disabilities. The intention is good—to provide safe, relatively independent living. But some of these communities are very segregated, not close to public transportation or walkable to shopping and other amenities. And so far, none of them are even close to affordable. They aren't (yet) funded by Medicaid.

This mom has also heard the horror stories about group homes. Out of options, about a year ago she asked her son's doctor to recommend a future home for her son. He had a suggestion: Hacienda HealthCare.

My friend toured the facility the physician suggested—and loved it. She said the staff was friendly and engaged, there was an art room, plenty to keep her son occupied. Residents seemed happy. She and her husband were ready to sign him up, and then they woke up on New Year's Day to the headlines.

We got quiet over our salads. I changed the subject and asked her where she got her purse.

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