Ilene Mae Butler had grown weary of life in the Midwest. She had run through a series of jobs and was fresh off a broken romance. It was time to start over.
She headed west — a young woman in the mid-1960s, all alone on a cross-country drive to California. She got as far as Arizona before her car broke down. She was out of options. She had to stay.
The mechanical problem with her Delta 88 Oldsmobile may have thwarted Butler’s plans but it set her on a path toward everything she really wanted: a home, a family and a calling. What started as an impetuous search for fulfillment and meaning in her own life became the heart of Hacienda Healthcare, a nonprofit organization that helps some of Arizona’s most profoundly challenged children and adults live with comfort, meaning and dignity in theirs.
In late September, the staff and families who make up Hacienda Healthcare celebrated its 50th anniversary. The gathering was emotional for some, with lots of laughter and hugs. It was a chance to reminisce, to compare stories and to pay tribute to Butler and many others who shared her compassion and vision.
Those who knew Butler describe her as a force of nature. She was strong-willed and determined. Her physical size — she was often the largest woman in the room — was a source of internal angst, but it created a confident and commanding presence.
“She wouldn’t take ‘no’ for an answer,” recalls her niece, Gerry Schwartz, of Grand Rapids, Michigan, who recounts family stories of early affronts that may have contributed to her aunt’s feisty nature. Butler was the youngest of seven children whose position as “the baby” was disrupted when her parents adopted two younger children. That didn’t sit well. And for some reason, in the aftermath of a childhood surgery to remove her tonsils,
Butler started gaining weight that would contribute to medical challenges she struggled with throughout her life.
She attended public schools in Monroe, Michigan through 10th grade. Then there were short-lived jobs in Michigan, New Jersey and Illinois. “She couldn’t seem to find her place,” Schwartz says.
But when the pastor at Butler’s home church in Monroe urged her to take a job working at a home for physically and intellectually disabled children in Watertown, Wisconsin, something clicked.
“She always took the hardest ones,” the kids who were most difficult to work with, says Schwartz, who as a seventh-grader accompanied her aunt to work one day. A “really big boy, Randy, latched onto me, and wouldn’t let go,” she says. “It scared me to death.” But her aunt took such episodes in stride and had an innate knack for managing them.
“She was just a plain, loving, ordinary person who fought for the underdog,” says Schwartz, who speculates that her aunt’s health and weight struggles gave her a deep empathy for people who had to live with circumstances they couldn’t control.
Butler’s decision to leave the Midwest came shortly after she and her boyfriend split up. Though bound for California sunshine, she settled for Arizona’s dry heat. She took a job at the Arizona State Hospital and moved into a mobile home in south Phoenix.
Butler must have missed the bustle and companionship of her large family. She wanted a family of her own, but had no marriage prospects. She applied to be a foster parent, but was told single women couldn’t do that. Undaunted, she revised her request, offering to take children who had been institutionalized because of physical or developmental disabilities. In 1967, the state granted her custody of Cindy, a 2-year-old with hydrocephalus (fluid accumulation in the brain).
Cindy was a “beautiful little girl with blonde hair and big eyes,” Schwartz recalls. Cindy also had a very short life expectancy. But she and Butler quickly developed a tight bond. For two and a half years they went everywhere together.
Butler took in two more children with special needs — Ronnie and Lupe, whom she later would adopt. But when Cindy died (tragically, the day before her own adoption was formalized), Butler became convinced that it was her mission in life to provide a loving home for other children with profound disabilities.
Her neighbors protested, saying that she was using residential property to run a business. Butler turned to local attorney Steven Friedman for help. He helped her apply for an institutional license and incorporate as a 501(c)(3). The name she chose, Hacienda de los Angeles, means “home of the angels.”
Butler leased a larger home near 19th and Northern avenues. By then, she had 19 children in her care, plus 10 employees and numerous volunteers. Butler’s mom and dad came out from Michigan to help. Her brother and a nephew joined the effort, too.
A member of Butler’s church donated six acres of land at 1402 E. South Mountain Ave. in Phoenix, and church members raised nearly $40,000 to begin construction of a stand-alone campus. In 1976, Butler, her staff and 35 children moved into this new, 8,000-square-foot home. Fundraisers — including a 1983 private concert by the Beach Boys and the sale of items designed from the works of artist Ted DeGrazia — helped finance remaining expansion costs.
The history gets a little murky in the wake of those triumphs, but for some reason Butler decided to leave. Some speculate the decision was health-related. Others hint at management conflicts within a rapidly growing organization. Whatever the cause, Butler packed up her family and moved to Mississippi. In 1995, following complications from bariatric surgery, she died. She was 59. Ronnie and Lupe moved to a group home near extended family in Houston, where they still live.
Bill Timmons, the current CEO of Hacienda Healthcare, never met Ilene Butler. But he conducted extensive interviews — with Schwartz, Friedman and others — to prepare remarks for a 2011 dedication to her memory. Butler was “ahead of her time” in recognizing the importance of a home-like atmosphere to the quality of life these children deserved, he says. She “hated with a passion the labeling these kids received from others.”
Timmons is a social worker who used to work for the Arizona Division of Developmental Disabilities (DDD) in northern Arizona. He would refer families to Hacienda when their needs could not be met in their home communities. In 1989, when he learned the organization was seeking new leadership, he applied.
“It was much more problematic than I expected,” Timmons recalls. “There were financial irregularities. Client care was bad. DDD was trying to shut it down. I had to fire a lot of people.”
He kept only those willing to embrace the motto he lives by and displays above his desk: “Perfection is our goal. We’ll settle for excellence.”
Following the management reboot, Hacienda stabilized and again began to grow.
In 1994, Los Niños Hospital opened in central Phoenix. It was the Valley’s first freestanding sub-acute children’s hospital and provided a needed transition point: Children who had stabilized after hospitalization elsewhere for a life-threatening condition could stay here while their parents learned to provide the medical care they would need at home.
In 2000, Maricopa County Health Services asked Hacienda to help with four medically fragile children who were stuck living in nursing homes for the elderly. “It was obviously not an ideal environment for them,” says Timmons.
Hacienda took in those children, and more. In 2004, a 58-bed skilled nursing facility opened at the South Mountain campus for infants, children, teens and young adults. And in 2015, a second sub-acute care facility, Hacienda Children’s Hospital, opened in Mesa.
The organization, renamed Hacienda Healthcare in 2006, now operates dozens of programs affecting the lives of more than 2,550 patients and their families each year. Among them are many “angels” who require lifelong care.
For the uninitiated, a visit to Hacienda Healthcare’s ICF-ID, or Intermediate Care Facility for the Intellectually Disabled, can be unsettling, at least initially. The residents — they’re often called “loved ones” by the staff — can be loud, their movements unpredictable. Or they can be eerily still.
After spending an afternoon in the ICF-ID, shadowing nurse Heather “Judith” Teaford, I quickly adjusted. Teaford, a Caribbean-born former model and proud grandmother of two, has an easy way about her. She takes things in stride, chats up the “kids” in her care (some are middle-aged) and seems to have a sixth sense about what they need.
These residents represent devastating, debilitating conditions with a wide range of causes — from the unpredictable and complicated nature of human genetics to the trauma of brain injury. The most heartbreaking cases, according to several staff members, are the babies and young children who were healthy and happy one day and then — because of physical abuse, an accident or a near drowning — were forever changed.
Many are in wheelchairs or hospital beds. They spend much of the day gathered in a central area with a big-screen TV on the wall (tuned to a country music channel the day I visited). Some have limbs that have atrophied or curled. Many are on feeding tubes or breathing support. Numerous attendants sit with them, conversing cheerfully (even when the residents can’t respond), supervising small games or crafts and watching for any signs of discomfort or need.
Teaford is always on her feet, circulating around the unit. She dispenses medications, checks vital signs, updates charts. It’s an endless loop that becomes stressful only when she can’t quickly find relief for a resident who is ill or uncomfortable. She doesn’t mind the long hours (12-hour shifts, three days a week). She accepts the fact that sometimes she will miss a meal because she’s too busy to take a break.
“These kids, they’re my passion,” she says. “When I leave here [at the end of the day], I want to know I did my best for them. I want them happy, comfortable, feeling good.”
At first, she admits, “I didn’t know if I could make it. The population couldn’t talk to me. It was scary. So stressful. What do they want? What do I do?” She quickly learned to read facial expressions, to decipher sounds. It was like learning a different language.
Now she knows each resident’s preferences and peeves. “Some of the personalities are so strong!” she says. “I love that, it challenges us.”
Take Christina, whose room we visited. “If she does not like what she eats, it messes up her whole day,” Teaford told me. “When she has behavioral issues, I know exactly what’s going on. If she gets what she wants to eat, she’s very happy.” Sometimes Teaford stops on her way to work to bring Christina a meal from Taco Bell. “Her mother died recently,” Teaford explained. “She used to bring her Mexican food.”
I’ll never forget how Tucson mom Tammy Stobel reacted when I asked if I could meet her son Logan, who lives at Hacienda. “I’m so touched that you want to meet him!” she exclaimed, the emotion in her voice conveying how rarely she hears that request.
As I walked through a newly installed automatic door at the entrance to the skilled nursing facility, I recognized Logan immediately. And not just because Tammy had sent me some pictures. Her son, who doctors once said would never walk, is “always on the move,” she says. When I saw a slender, handsome young man repeatedly walking out the door, then back in — a caregiver constantly at his side — I knew exactly who he was.
Stobel and Timmons had invited me to join a meeting that was already in progress when I arrived. It was called a “180-day meeting” to discuss progress toward Logan’s Individual Support Plan, or ISP.
A number of professionals and advocates were gathered around the table, including a care coordinator, a clinical coordinator, a social worker, a representative of DDD and another mom, a member of Hacienda’s Power of Loved Ones, or POLO, parent-support organization.
Teams like this meet throughout the year to keep tabs on the residents in care. The discussion is wide ranging: medical status, dietary needs, occupational and/or physical therapy, speech, mechanical supports and progress on these “active treatment” objectives.
“We don’t give up on anyone’s capacity to grow, learn and experience quality of life,” Timmons explained.
Some might wonder how much people like Logan, whose intellectual growth halted at the level of a 9-month-old, really benefit from concerted therapies like those he receives.
You don’t have to convince Stobel. She knows.
“He’s made so much progress,” Stobel says. “He interacts with peers. He walks to the park [with an aide]. He walks indoors when it’s too warm outside. He gets music therapy, pet therapy … they really look ‘out of the box’ to help each and every loved one have a fulfilling life.”
Active treatment can be offered only in ICF-ID settings, which require a higher level of scrutiny to become state-certified than is required of the other option for aging members of the medically and intellectually challenged community: a medical group home. (Hacienda also operates several medical group homes.) Though smaller and less “institutional,” a medical group home cannot provide the same level of staffing, medical support or access to therapies that Logan needs.
Twenty-nine years ago, when she was pregnant with Logan, Stobel and her husband visited Tucson and fell in love with the Sonoran Desert. Little could she know they would return to Arizona years later, after raising their family in New York, because our state offered what they consider the best possible option for their son’s care.
“Logan is a very complex child,” Stobel says. “He has multiple congenital conditions and excessive medical needs.”
Logan was born with congenital heart defects that required open-heart surgery when he was 10 days old. He couldn’t eat, so a gastrostomy tube (G-tube) was inserted through his abdomen to deliver nutrients directly to his stomach. He had low muscle tone. A cleft palate. A fused kidney. Doctors said he would never walk, never talk, never eat by mouth.
What he didn’t have was a clear diagnosis. Without that, the family was in limbo. “If he’d been labeled cerebral palsy or Down syndrome it would have been different,” Stobel says. “It would have put us in touch with support groups, schools, therapies.”
It’s difficult to imagine how isolated Stobel must have felt during those first few years, or how stressful her existence.
“I was lost, locked in my home with a sick child,” she says. “It was my whole world. It was like being in a bubble — no internet [in those days], no books [about Logan’s condition], nothing. I used to sleep in my clothing every night. I never knew from minute to minute what it would be. Seizure? Heart failure? I was always ready to go.”
Logan lived at home well into his 20s, as Stobel and her husband raised three younger children who quickly learned to shrug off questions about their big brother (“Why is he in diapers?” “Why doesn’t he speak?”). “That’s just the way he is,” they would respond.
Despite the logistical difficulty, Logan went everywhere with his family — on vacations, trick-or-treating. “I learned more than I ever imagined how much strength I have,” Stobel says.
But she’s also realistic. Her other children are grown. She and her husband are getting older. “We felt it was more appropriate for him to be with peers in a more natural setting, to be independent instead of living with his parents,” she says.
After an exhaustive search, she and her husband found Hacienda. It offered just the right combination: a warm, home-like environment and 24-hour nursing care. Logan has been at Hacienda for a little over a year. Stobel visits him nearly every Monday.
“He’s so happy,” she says. Logan delights in watching “The Lion King” movie, or listening to the sound of rocks rattling inside a homemade water-bottle shaker his mother brings from home. He is learning to brush his own teeth and shower. With the help of an aide, he can use an iPad. He can follow one-step directions.
For Logan, she says, Hacienda provides “one big, happy family. Everyone is giving my son high fives. Everyone knows his name, his allergies, what he can and can’t do. It’s not a dark place at the end of a rope. I feel totally comfortable with him in this wonderful atmosphere.”
It is exactly what Ilene Butler wanted to provide for the children she welcomed into her home so many years ago. Largely through her own faith and fortitude, she got the ball rolling. As it picked up steam, others propelled her vision beyond what she ever imagined.
As her niece, Gerry Schwartz, scanned the crowd during the 50th anniversary celebration, she was clearly moved. “Ilene would be so proud,” she said softly.
Under the Hacienda umbrella
• Hacienda Children’s Hospital, in Mesa, provides a bridge from hospital to home when the immediate crisis has passed, but a child is not yet well enough to go home.
• Hacienda Skilled Nursing Facility, in south Phoenix, provides round-the-clock care to children and young adults (age 45 or younger) who require long-term, short-term, respite or palliative care tailored to meet their needs.
• Hacienda’s Intermediate Care Facility for the Intellectually Disabled (ICF-ID) is also on the south Phoenix campus. It is Arizona’s only private all-inclusive residential care facility for long-term, transition-to-home and short-term respite care. A key component of the programming is “active treatment” designed to enrich the lives of residents and maximize each individual’s fullest developmental potential.
• Los Niños Hospital, on Thomas Road in Phoenix, provides families with an intimate, home-like setting in which they can focus on their child’s health and the hands-on training they will need to care for their child at home.
• Hacienda Healthcare also provides home-based respiratory care, home-based nursing services, day treatment and training for adults and residential medical or non-medical group homes for individuals with intellectual and developmental disabilities. A respite-care program provides families and caregivers with a short-term break from the 24/7 demands of caring for their loved ones. Hacienda also offers group-home living and pre-vocational/vocational training for young men and women diagnosed with autism spectrum disorder. Learn more at haciendainc.org