Zainab Edwards is an ice skater.
It runs in the family. Edwards’ mother, Cynthia Elliott, grew up on the ice in Minnesota, and her older daughter skated competitively for years. So when Elliott and her husband Dave agreed to foster Edwards five days after her fourth birthday, the little girl was in skates almost immediately.
On a hot spring day in 2021, Edwards, 23, stepped gingerly onto the ice at a rink in Chandler, Arizona. The place was nearly deserted—perhaps due to COVID-19, or maybe because it was a Thursday morning. Pop music blared from the speakers as Edwards moved slowly, led by an instructor who faced her, holding both of her hands.
Edwards smiled. Elliott exhaled.
This was a good day, though the young skater did wave away a request to talk with a reporter.
Edwards has had challenges her entire life. She was born profoundly deaf. Digestive issues led to the removal of her colon; she has an ileostomy bag for life.
For many years, American Sign Language and, later, cochlear implants, allowed her to engage with the world.
But in 2014, everything changed. Edwards began to have difficulty walking and picking up objects. She could no longer tolerate her cochlear implants. She began to have hundreds of uncontrollable seizures each day. She became combative, lashing out physically at caregivers and her mother. At one point, her condition was so bad she couldn’t feed herself.
It took years to figure out what was going on and by then, it was too late for a full recovery.
In 2017, Edwards was diagnosed with autoimmune encephalitis, a rare, hard-to-detect condition sometimes called “brain on fire.” Caught early, the effects can be reversed. For Edwards, it was largely too late.
Physical therapy allowed Edwards to ice skate again and ride her bike.
“She still can’t write her name,” Elliott said. “She’s lost all those cognitive skills. Those have never come back.”
Unable to keep her daughter safe at home and concerned about what will happen when she and her husband are no longer around to care for her, Elliott, now 71, began to look for a permanent living situation. After a lot of research, she and her husband purchased a townhouse—close to their home, walking distance to a park. The plan was to have the young woman live with a roommate—both for company and to offset costs—with caregivers and other services provided by the state of Arizona.
That never happened, dashed by Edwards’ aggressive behavior.
Depending on an individual’s needs, some families are able to pay out of pocket for services. But in many circumstances, that’s impossible—leaving family members to care for a loved one round the clock.
About 7.4 million people with intellectual and developmental disabilities live in the U.S. Of those, only about 1 in 5 receives paid supports from a state agency, according to a 2017 U.S. Department of Health and Human Services report.
Most Americans with intellectual and developmental disabilities get nothing at all. Others languish for years on waiting lists.
But Arizona’s unique structure of services means that the state pays more than $1 million a year for Edwards’ care.
And yet Edwards’ family says her quality of life is dismal. Even when funding is available, there are vast disagreements in the disability community about what constitutes an appropriate living setting, let alone specifics regarding care.
How to create a healthy, happy community setting for an individual with complex behavioral and medical needs is a political, philosophical, and economic conversation that often goes unheard.
As of September, Edwards had two round-the-clock caregivers and a third during the day, all three fluent in ASL. She also had a nurse and sign language interpreter for the nurse, both 24/7. A behavior coach was with her 40 hours a week, along with another translator. This—along with medical costs and transportation—is almost all paid for by the government.
When spending that amount of money on services for one individual still can’t provide a safe, happy, and productive life, it calls into question how the money is being spent and the assumptions underlying state policies on care.
Because of high staff turnover and insufficient training, Elliott said, she still provides almost constant care for Edwards—administering medication, grocery shopping, planning outings, making doctor appointments, and dealing with trips to the emergency room when Edwards’ behavior spins out of control.
At least 60 different staff people have been in and out of Edwards’ home in the last couple of years, Elliott said.
Between January 2018 and January 2022, the police were called to Edwards’ house more than 100 times.
“The behavior following some of her seizures is extreme. She has kicked out the van windows, broken her bedroom window that was plexiglass. She will hit, kick, bite, pull hair,” Elliott said.
Even when there’s no health crisis, Edwards’ quality of life isn’t great, her mother said.
The young woman is surrounded by caregivers, but according to Elliott, it’s rare that anyone attempts to engage with her daughter.
After Edwards got second degree burns on her hands and her mother was unable to determine what happened, Elliott installed five cameras in Edwards’ home. She said there hasn’t been a similar episode since—but the cameras show how isolated her daughter is.
“It’s heartbreaking to see Zainab sitting alone at the kitchen table eating a meal while three staff sit in the other room on their phones.”
The hardest part, Elliott said, watching Edwards move across the ice, is knowing her daughter is capable of so much more.
Searching for Solutions
Generations ago, Zainab Edwards would have been sent to live at the Arizona Training Program, the state’s institution for people with intellectual and developmental disabilities, which is a one-hour drive from Phoenix, or maybe to the state mental hospital near downtown.
Edwards would have been isolated from her community, by either distance or razor wire. Forays off an institution’s grounds would have been rare, and poor behavior would likely have resulted in physical restraint and isolation.
Instead, as a result of decades of reforms and a landmark 1999 U.S. Supreme Court case, federal regulations call for states to create mechanisms that help people with disabilities live among members of their community.
Technically, Zainab Edwards lives in her community. But in many ways, she’s in an institution of one.
The reality is that people with the most complex needs and, in particular, aggressive behaviors are often isolated from the rest of the world, even when their living situation technically fits within the letter of the law.
Although services are funded through Medicaid, each state has its own method of delivery. Arizona, where Edwards lives, is considered one of the best because it allows anyone who qualifies for services to receive them immediately. Unlike most other states, Arizona has no waiting lists.
In 2018, the state created an “Enhanced Transitional Group Home” model, designed to devote extra resources to support people with complex needs.
But that does not necessarily mean that Arizonans with intellectual and developmental disabilities are getting what they need.
The Center for Public Integrity obtained a copy of a 2019 study of individuals in Arizona enhanced group homes. In a review of eight people (not including Edwards, though she’s in a similar setup), a researcher concluded that seven of the eight were no better than they’d been in previous settings.
Critics say oversight is lacking and regulation inadequate.
“It is clear to anybody with eyes that the way things are being handled right now simply isn’t effective,” said Jon Meyers, executive director of the Arizona Developmental Disabilities Planning Council, which advises the state on issues facing people with intellectual and developmental disabilities.
Meyers said that high turnover among caregivers, which he blamed on low pay and a lack of training, is one of the most significant challenges facing the system. Simply adding staff members, as has happened with Edwards, isn’t enough, he said.
“It is not just a matter of not having enough money. It’s a matter of using the money wisely,” he said. “We are often just throwing money at it without knowing what is going to be effective.”
There’s another element, too, Meyers said—“questions we don’t yet have answers to. There are people whose diagnoses are so complex that right now we can’t fully provide for them. We can’t fully provide the care they need.”
A spokesman for the state didn’t address questions about the million- dollar price tag for services for some people with IDD, but did acknowledge that the initial project was not perfect.
“While there were aspects of the pilot model that were more successful in providing individuals with an engaging living environment where their needs were supported, the division continued its work to improve and enhance this service model,” said Brett Bezio, deputy press secretary for the Arizona Department of Economic Security, which oversees the Division of Developmental Disabilities. “Using the information and trends that were identified in those initial years, review of models in other states, as well as working with external experts in this field, the division has created an updated service specification for this type of residential placement setting that it hopes will make the service more effective in the future.”
Finding, training, and adequately paying caregivers is a nationwide challenge.
A workforce shortage of unprecedented proportions has challenged just about every state to provide care for its most vulnerable residents. Just before the pandemic, a survey by ANCOR, a national trade association that represents care providers, showed that almost 70 percent of caregiving agencies could not provide the services needed. The problem only worsened during the pandemic.
Because of low pay and staff shortages, a disturbing trend has emerged, said Barbara Merrill, chief executive officer of ANCOR.
“[States are] closing the smaller three-, four-bed group homes and moving people into [larger] group homes,” Merrill said. “And that is going in the wrong, wrong, wrong direction. It’s not what we’re trying to do as an industry, it’s not what we’re trying to do as a country.”
At the same time, institutions across the country are closing. In Washington state, families and guardians are concerned that as congregate care facilities shut down, there are few alternative placements.
A 2012 University of Minnesota study outlined the challenges for families of people with complex behaviors.
Amy Hewitt, who worked on the study, is the director of the Institute on Community Integration at the University of Minnesota. She recalled a situation involving a man with developmental disabilities who had several staff members—and a similar outcome to Zainab Edwards.
The man’s caregivers were so poorly trained and ill-equipped, Hewitt said, they were afraid of him.
“The staff would run and hide,” she said.
And the man was not integrated into the community.
“He had an exercise program where he would just walk the perimeter of the inside of his bedroom over and over and over and over,” Hewitt said.
“You can throw all kinds of money at something, and it’s not going to make it work if you’re just doing more of the same, which is sort of glorified babysitting,” she added.
“From that kind of money, you could buy the best behavioral consulting the world had to offer.”
Good intentions simply may not be enough.
“Having philosophical values is fine,” said Bob Kafka, a longtime organizer with ADAPT, a grassroots disability advocacy organization, “but where the rubber meets the road is how you’re going to implement it.”
Nothing Was Easy
Cynthia Elliott understands the history better than most. She lived it.
The eldest of four children growing up outside of St. Paul, Minnesota, in the 1950s and ’60s, Elliott’s youngest sibling was born with craniosynostosis. The bones in her skull fused too early, most likely causing brain damage. Jeannie Elliott never walked, talked or sat up. Swallowing was a challenge, which made mealtime tough.
Jeannie lived in an institution, then later a group home closer to family. Elliott remembers visiting often.
“We learned that we needed to call first. Not because … you needed to give them a warning, but because they might not be there,” Elliott said. “I mean, as severely disabled as my sister was, they were gone all the time doing stuff.”
That’s what Elliott thinks about when she checks the cameras and sees her daughter asleep on the couch in the middle of the day, her caregivers staring at their phones.
After college, Elliott worked as a special education teacher at Faribault State Hospital and then in public schools when she moved to Arizona in the mid-1980s.
When their biological daughter was grown, Elliott and her husband decided to take in a foster child, and because Elliott knew basic sign language, she and Edwards were a good fit.
Elliott has had to fight for Edwards from day one.
She and several other family members of people with intellectual and developmental disabilities have met with Nancy Barto, a conservative Republican state senator from Phoenix.
“It really brings it home when you spend time with these families and they go into so much detail,” Barto said. “It’s extremely troubling to me that it’s continuing. … If they qualify it’s the state’s responsibility to provide that service.”
With the help of Elliott and other family members, the disability community had several wins during the legislative session that ended in June.
Barto helped secure more funding than has been made available in many years to pay caregivers, although lobbyists for the direct service provider industry estimate there is still a shortfall of more than $120 million. Additional reforms include calling for an audit of Adult Protective Services and allowing guardians to place cameras in group homes.
In testimony earlier this year before the state Senate Health and Human Services Committee, which Barto chairs, Elliott described the experience of meeting with the senator and other families.
“When we started to meet with you, Senator Barto, I was surprised that all of us as parents felt that our kids are so unsafe, that we wish that we would pass away with our children,” Elliott said.
“Grand Canyon of Service Gaps”
It’s not just about pay increases and better oversight. There is a fundamental disagreement within the disability community over how best to provide services to people with the most complex needs.
The federal government has changed guidelines on home- and community-based services to broaden the definition of acceptable housing to include some larger facilities as well as remote settings such as farms, but there is a heated debate in the disability community about how best to serve people with the most complex needs, many of whom have autism.
Jill Escher lives in northern California and heads the National Council on Severe Autism, an organization that is controversial for many reasons—including its name. Her son, now in his 20s, is autistic and lives in a house with support staff in the community close to his parents, who see him daily. The home has locks on the doors that can be used to prevent him from wandering. Many advocates in the disability community are opposed to any kind of locked living environment. Escher said it’s required for safety.
“Society basically wants nothing to do with my son,” she said. “It’s very easy for people in the disability rights community to talk about inclusion. For other people, having specialized supports is absolutely the paramount goal.”
Julia Bascom, executive director of the Autistic Self Advocacy Network in Washington, D.C., understands that the needs of people on the autism spectrum can vary dramatically. But she believes that just about everyone can live in the community. She said she’s seen it but admits it’s somewhat rare.
“I haven’t seen it scale effectively to a state or a series of states,” she said.
Almost always, a person having behavior issues is responding to something negative in their environment. Remove that, and the behavior improves, Bascom said.
She acknowledged that it is difficult.
“It’s not just putting a group home in a neighborhood, but actually supporting that person to have relationships,” she said. “Even when we’re spending a million dollars, we’re not necessarily spending it on things that work.”
“Someone called it the Grand Canyon of service gaps,” Escher said. “That’s right. That’s exactly what it is.”
Joy in Small Victories
On a pretty winter day in Mesa, Arizona, Zainab Edwards made a brief appearance at the park near her house. She wore a harness designed to keep her safe when riding in the minivan necessary to transport her entourage, who trail behind. After a few minutes, Edwards was ready to go home. She didn’t want to talk to a reporter, looking away shyly.
The van pulled away and Cynthia Elliott—who drove separately—found a shady spot at a picnic table. She spoke about her sister Jeannie’s life, about her own time teaching special education, about what Zainab’s life was like before the autoimmune encephalitis.
Since she got sick, every single thing seems to be a struggle.
Recently, Elliott said, “I was changing her ostomy bag. And they [the staff] had let it leak all night so her skin was really raw and so it hurts.”
After that, Elliott demanded 24/7 nursing care for Edwards. The state agreed. Elliott credited the behavioral coach, nursing care, and the cameras—which she monitors constantly on her phone—with keeping Zainab safe. But the trips to the emergency room continue. Elliott was not sure how long this can go on and lately, she said, she’d started to wonder if an institution wouldn’t be a better option for her daughter.
“Some facility that could safely provide for all of her needs,” Elliott said.
“I get that Zainab is difficult and she doesn’t fit anywhere.”
Elliott isn’t giving up. For now, she is trying to find joy in small victories.
Update, Jan. 1, 2023: This article was updated to clarify Jill Escher’s son’s home environment.
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