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. She flourished – visiting Disneyland with her family, making friends at school and participating in Special Olympics. 

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 a million dollars 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 wrote in an email to the Center for Public Integrity.

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. Elliott says she has to push staff to have Edwards help with household tasks like emptying the dishwasher or folding clothes. 

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, either by 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.

In that case, Olmstead v. L.C., the court said that under the Americans with Disabilities Act, segregating people with disabilities who could live in the community with supports was discrimination.

Technically, Zainab 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, particularly, 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: 

“The members did not make significant behavioral gains in either reduction of challenging behaviors or acquisition of social and self-determined competencies” and that “staff and member engagement in participatory, meaningful, and functional activities was staggeringly low.” 

A young woman referred to as “RS” was one of the eight people studied. She has autism and mental illness, and often has aggressive behavior. 

The researcher said RS’s caregivers were engaged with the young woman only about 30% of the time – slightly higher than the average of 25% among the eight people studied.

“During the observations, RS predominantly sat by herself looking at her iPad,” the researcher wrote, adding that the young woman had continued to harm herself and others, despite a high staff ratio.

The group home “has not improved [RS’s] quality of life in over 14 months,” the researcher concluded.

An accounting by the state obtained by the Center for Public Integrity showed that at more than $87,000 a month, RS’s care, like Zainab Edwards’, exceeded a million dollars a year. 

Despite the large amounts of money being spent on services for people state employees have internally referred to as “Complex Carls,” caregiver pay remains low. 

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 intellectual and developmental disabilities, 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% 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. The conclusion could have been written today. 

Families “often have difficulty in keeping jobs; can have limited opportunities for socialization, friends and family due to social isolation; may be sleep deprived because their children are up all night; and may encounter frequent injury such as bites, bruises, hair pulled out of their heads and even broken bones,” researchers wrote. ”Even in these crisis situations, families wait for services.”

In other words, easier said than done. 

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 in the bathroom, in the kitchen, in the staff area. There’d be five of them.” 

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.”

Mobilizing against mistreatment

Society has never known what to do with someone like Zainab Edwards. 

Historically, people with disabilities were isolated, mocked and abused.

The emphasis on science during The Renaissance led to a greater understanding of disability, and later philosophers studied people with cognitive challenges as a precursor to the development of the field of psychology. 

That didn’t necessarily translate into better living conditions.

Dorothea Dix, a social reformer in Massachusetts in the mid-19^th century, was horrified by living conditions for people with mental illness and intellectual and developmental disabilities. Her work led to the creation of public institutions for them and people with mental illness – to the chagrin of later generations of advocates. 

Arizona’s State Asylum for the Insane opened in 1887. In 1912, the year of statehood, the asylum’s annual report listed 375 residents and included obvious cases of intellectual and developmental disabilities. 

In the late 1940s, right around the time that Arizona’s leaders were considering building a separate institution for people with such conditions, controversy arose. Conscientious objectors to the draft in World War II were instead assigned to work in institutions, and spoke out about poor conditions. In 1950, families came together to form the National Association for Retarded Citizens, now known as The Arc of the United States, and began mobilizing against mistreatment. 

The disability rights movement began in earnest in the 1960s, championed by the Kennedy family, in honor of Rosemary, President John F. Kennedy’s younger sister, who had an intellectual disability made worse in her 20s by a lobotomy.

A 1966 photo essay called “Christmas in Purgatory” documented terrible living conditions in institutions across the country. Geraldo Rivera, then an investigative reporter for ABC, broadcast an infamous exposé of Staten Island’s Willowbrook State School in 1972 that drew national attention to the conditions at such facilities. 

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. 

The truth is, nothing was easy. 

Their mother insisted on keeping Jeannie at home with the family, but with no services at all, she became exhausted. 

“My mom was hospitalized with a nervous breakdown, and the doctor said they wouldn’t discharge my mom until my sister was gone,” Elliott said.

So at 5, Jeannie was sent to live at Cambridge State Hospital. Elliott remembers making the 45-minute drive with her family every other Sunday to visit. 

“It was horrible,” she said. “That was back in the day where you’d see people walking around in hospital gowns. They didn’t have clothes.”

Because of her fragile medical condition, Jeannie lived in the infirmary. And she did have clothes. The Elliott family made sure of it. 

Later she was moved to a group home where she lived for her remaining 18 years. Jeannie’s caregivers took her out for manicures and massages. They brought her to a bookstore to listen to music, and if she responded to a CD, they bought it. When the weather was good, she spent time outdoors. 

“We learned that we needed to call first. Not because it was, you know, 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. 

These days, when she’s not monitoring her daughter’s care or providing it herself, Elliott writes to bureaucrats, testifies before the state Legislature, and files complaints with agencies like the U.S. Department of Health and Human Services’ Office of Civil Rights, which upheld her claim that the state of Arizona was violating the Americans with Disabilities Act by refusing to provide ASL interpretation for Edwards. 

Elliott is now filing another complaint with the assistance of the Arizona Center for Disability Law, because she said the state failed to provide Edwards with a day treatment program for two years. She said she spent more than a year and a half trying to get the state to approve a behavioral treatment plan that her daughter’s caregivers can follow. 

And then there are the near-constant calls to police. For several years, when Edwards had a seizure, she would often become combative immediately afterward. Her staff do not have permission from the state to hold her down, even for the three seconds her mother said it takes for a nurse to administer a nasal spray. So often someone would call 911. 

Elliott said that lately, Edwards has gotten better at tolerating the medication with minimal intervention. 

Elliott 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. When we fail repeatedly then things have to change.”

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. 

All state employees in Arizona received a 10% raise, which is significant because support coordinators for the Division of Developmental Disabilities had not received one in a decade. 

Perhaps equally important, the Arizona Legislature passed several measures that – if implemented properly – could increase oversight and accountability in the state’s system, including:

*Funding of $1.2 million for a three-year pilot program to conduct an independent review of group homes. 

*An increase in the number of Adult Protective Services investigators, as well as funding for an audit of APS. 

*The addition of “emotional abuse” to the list of abuse categories that Adult Protective Services can investigate. 

*A new law allowing guardians to have cameras placed in common areas of a group home at the guardian’s expense.

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. “I was shocked that there were others that have the same fear that our children’s safety and well-being is jeopardized by living in a DDD group home.”

“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.”

Instead of the term “severe autism,” Bascom and others in her circle prefer that the individual be described with specifics – for example, as having “complex behavioral needs.” 

The conversation gets tricky, fast. 

Last year, David Axelrod, who served as a senior advisor to former President Barack Obama, wrote an op-ed for the New York Times about his daughter, who has complex needs and lives in an institution-like setting in Chicago. He was vilified by the disability community because he was seen to be supporting institutionalization. 

But even settings like the one Axelrod’s daughter is in sometimes won’t accept a person with aggressive behavior.

“Someone called it the Grand Canyon of service gaps,” Escher said. “That’s right. That’s exactly what it is.” 

One family in California has found a way to fill that gap. 

On a clear, sunny day in November 2021, Joaquin Carson waited patiently for his favorite lunch, a hamburger. Seated in the back of a car just outside of his home in the mountains east of San Diego, he was strapped into a harness for safety. 

Joaquin’s sister Diana poked her head in to say hello. He smiled. 

She’s his older sister but just by a year, so Diana always felt like she and Joaquin were twins. But their lives have always been different. 

At 2, Joaquin was diagnosed with autism. Diana, who teaches a disability studies course at San Diego State University, said that in the early ’70s, autism was still called “refrigerator mom syndrome,” blamed on cold, insensitive mothers. 

Their mother was the opposite, recalled Diana. Her parents mortgaged their home to build a swimming pool for therapy. No one wanted Joaquin to leave home, but by the time he was a teenager, his behavior was putting himself and others in danger. 

The whole family piled in the car and drove Joaquin two hours to Fairview State Hospital. His mother wore black for a year. He later moved to a group home, but then developed aggressive behaviors.

“I believe he was communicating that something was wrong at home, in his group home,” Diana said.

Joaquin was sent back to the state hospital. 

“There’s no humanity in that kind of a situation,” Diana said. 

Ultimately, Diana decided to take Joaquin home. 

She and her husband purchased a home with a barn an hour east of San Diego. The barn was retrofitted or, as Diana put it, “Joaquinified,” to make it safe for him and his caregivers. Diana has an office upstairs. 

At first, a virtual tour of Joaquin’s home is jarring. It’s bare — the refrigerator bolted to the wall, the television behind plexiglass. The windows are shatterproof. There’s no furniture that can be thrown; even a toilet lid can be dangerous. Joaquin’s room holds little more than a bed frame and mattress. But there are homey touches like murals, an alternative to artwork hung on the walls. 

Diana said they’ve been lucky to have staff that has stuck around for years. 

Brittany Merrill, who has worked with Joaquin for the past eight years, said she is the lucky one. 

She’d worked different jobs, including head cashier at Home Depot, but Merrill felt called to work with people with developmental disabilities. 

“My sister is special needs, she’s developmentally delayed, and I have always been a part of that and caregiving for her and I cared for my grandmother till she passed away,” she said. 

Merrill said she works closely with Joaquin’s sister, as well as the agency that hired her. She received training on how to work with someone who is having a seizure, as well as people with complex behaviors. There is ongoing training on how to use a letter board, a device Joaquin uses to communicate. 

The team of people who care for Joaquin – including a coordinator, behavioral therapist, nurse and caregivers have monthly meetings. 

Merrill makes $18.50 an hour. And the work can be difficult. 

“These jobs, they are mentally draining. You just have to make sure you take the breaks you need and try not to get overwhelmed because you will have those days that are harder than others.” 

But she said it’s worth it. 

“Our team – we are one big family,” she said. “And once you have those dynamics you don’t want to give up.” 

Though he doesn’t say much, those close to Joaquin said they believe he is happy. When the family was struggling to get him out of the institution, she recalled, their mother asked him what he wanted her to make for him to eat when he got out.

“Steak!” was the answer, which confused Diana, who doesn’t recall eating it growing up. To this day, she said, if Joaquin is having a good day he’ll announce, “I like steak.”

He loves anything on wheels, his sister added – bikes, motorcycles, cars.

So a car ride to get a burger is a pretty good thing. 

Diana is grateful their mother knew Joaquin was in a good place before she died in 2015. She said she knows Joaquin is lucky, that they’re all lucky to have a close family who support one another, that she and her dad were able to draw from retirement savings to retrofit the barn for Joaquin, and that she’s able to be close by. 

What about others?

“That’s the million dollar question,” she said. 

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.

Shortly before the pandemic, Elliott and several other local advocates drove to the tiny town of Coolidge, to tour the Arizona Training Program. They wanted to see what an institutional setting looks like. The expansive grounds once housed more than a thousand people, but today only a few dozen remain. When the last person dies, it will close. 

Elliott recalled that the other advocates — most of whom have family with intellectual or developmental disabilities – were shocked at the setting. She was not. 

“I have some comparison and I thought it looked pretty good,” Elliott said. 

If the institution was still accepting new people, Elliott would probably send her daughter there, she said, looking wistful. She’s not sure Edwards will be safe anywhere in the community.

“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. 

“We’ve reached the point of really exhausting medical options and really, really focus on the positive days we have and enjoy the activities we can do with her and the community,” she said. 

This past summer, Edwards took part in a couple of skating exhibitions, taking the ice in a Cinderella dress complete with a tiara and white lace gloves. Some days seizures keep her off the ice; other days she’s able to cross the ice with help. 

“Anything we can do that’s something she is passionate about, we let her do it, as limited as it might be. It doesn’t matter,” Elliott said. “She counts the months till the next skating exhibition. She’s already talking about that.” 

Clarification: Dec. 22: An earlier version of this story said that Jill Escher’s son lived in a gated community. He lives in a house in the community, which has locks on the doors that can be used to prevent him from wandering. 

The post Million-dollar question: How to find safe homes for those with complex needs appeared first on Center for Public Integrity.

Zainab Edwards is an ice skater. 

Ice skating runs in Zainab’s family. Zainab’s mom is an ice skater too. Her name is Cynthia Elliot. Cynthia’s other daughter used to ice skate too. 

Cynthia and Dave are Zainab’s foster parents. They have been fostering Zainab since she was 4 years old. 

Zainab is 23 years old. She ice skated with an instructor in Chandler, Arizona. She had a good day. 

Zainab did not want to talk to a reporter. 

Zainab has disabilities. She is deaf. She used to use American Sign Language and cochlear implants to communicate. 

She does not have a colon. She wears an ileostomy bag. The bag holds her waste. 

Zainab used to have a full life. She went to Disneyland. She had friends. She did the Special Olympics. 

In 2014, Zainab got very sick. She had trouble walking and picking things up. She had many seizures every day. She could not wear her cochlear implants. She got angry and tried to hurt her mom and caregivers. She could not feed herself. 

Zainab has autoimmune encephalitis. That means her body attacks her own brain. 

Zainab did physical therapy after she got sick. She learned how to ice skate and ride her bike again. 

Her mom said: 

“She still can’t write her name. She’s lost all those cognitive skills. Those have never come back.” 

Zainab needs somewhere safe to live. Her parents worry about what will happen when they die. 

They bought a house for Zainab. It is close to their house. 

They wanted Zainab to have a roommate. But Zainab did not get a roommate. Zainab might hurt someone else who lives with her.

Many people have disabilities like Zainab. These disabilities are called intellectual and developmental disabilities or IDD. People like Zainab are sometimes called people with complex needs. That means they need a lot of support. Sometimes it means they hurt themselves or other people.

Here are the ways people with IDD get support services:

• They or their families pay for services.
• Their families are their caregivers.
• A state agency pays for services. 

Only 1 in 5 people with IDD get paid services from their state. 

Most people with IDD do not get any help paying for services. 

Some people with IDD wait for a long time to get help from their state.

Zainab gets services paid for by the state of Arizona. Arizona pays more than $1 million a year to support Zainab. 

But Zainab’s family says her life is not good. 

Having money to pay for services is not the same as having good services. 

People do not agree on the best ways to support people like Zainab. 

Zainab has many staff. She has:

• Two caregivers who stay with her all the time.
• A nurse who stays with her all the time. 
• A sign language interpreter for the nurse.
• Another caregiver who stays with her during the day. 
• A behavior coach. 
• A sign language interpreter for the behavior coach.

Arizona pays for Zainab’s staff. Arizona also pays for most of her medical costs and transportation. 

But all of these services do not make Zainab’s life safe, happy, or productive. 

Zainab’s mom Cynthia says that Zainab gets new staff a lot. She said they do not have the right training. 

Cynthia spends a lot of time caring for Zainab herself. 

Zainab has had 60 different staff people in the last couple of years.

The police have come to Zainab’s house more than 100 times between 2018 and 2022. 

Zainab’s mom Cynthia wrote an email that explains why the police come to Zainab’s house. She wrote: 

“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.” 

Zainab does not like taking medication. Her staff cannot hold her down to take it. So her staff call 911 to help. Zainab is getting better at taking medication on her own. 

Zainab does not have a good quality of life. 

Zainab’s staff do not talk with her very much. Zainab’s mom Cynthia has to ask them to help Zainab do chores around the house. 

Zainab got bad burns on her hands at home. Her mom Cynthia could not figure out how it happened. Cynthia put cameras in Zainab’s home so she could see what was happening. 

The cameras show that Zainab is alone a lot. 

Zainab’s mom Cynthia said:

“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.”

Cynthia thinks Zainab can do a lot more. 

Searching for solutions

Many people with complex needs like Zainab used to live in institutions. Institutions are large places where many people with disabilities live together.

Arizona’s institution is called the Arizona Training Program. It is 1 hour from Phoenix. 

Arizona also has a state mental hospital in downtown Phoenix. 

In the past, people who lived in institutions did not leave very much. They lived far from their communities. People with IDD were tied down or kept alone if they did not behave well. 

In 1999, there was a Supreme Court case that said people with disabilities deserve help to live in their community. The case was called Olmstead v. L.C. 

The judges said forcing people to live in institutions broke a law called the Americans with Disabilities Act. 

Zainab lives in her community. But she is isolated. It is like she lives in an institution all by herself. 

Zainab has many needs. She has aggressive behavior. That means she might hurt herself or other people.

People with complex needs are often left out of their community. 

Many people think Arizona is one of the best states to live in if you have IDD. No one with IDD has to wait on a list to get services. If you qualify, you can get services right away.

Arizona has a program for people with complex needs like Zainab. It is called the “Enhanced Transitional Group Home.”

But people with complex needs are not getting what they need in Arizona.

A researcher looked at 8 people living in Enhanced Transitional Group Homes in Arizona.

They said 7 of the 8 people did not have better lives in the group home than they had before. 

The researcher wrote: 

“The members did not make significant behavioral gains in either reduction of challenging behaviors or acquisition of social and self-determined competencies” and that “staff and member engagement in participatory, meaningful, and functional activities was staggeringly low.” 

This means the people in these group homes did not learn to do new things or go into their communities very much. 

One of the people in the study was a young woman called RS. She has autism and mental illness. 

The researcher said RS’s caregivers did not spend much time with her. They only spent 30% of their time with her. That would be about 18 minutes of every hour. 

The researcher said RS spent most of her time on her iPad. 

RS also hurt herself. Having more staff did not make her life better. 

RS’s care cost a lot of money. Arizona pays more than $1 million a year for RS’s care. 

The people who care for RS do not make a lot of money. 

Some people say there are not enough rules about services for people with IDD. 

Jon Meyers is the executive director of the Arizona Developmental Disabilities Planning Council. He is one of the people who thinks services are not working well. He said:

“It is clear to anybody with eyes that the way things are being handled right now simply isn’t effective.” 

Jon said one big problem is that staff leave their jobs a lot. They do not have enough training. They do not make enough money. 

He thinks just having more staff does not make caregiving better. 

Jon said:

“It is not just a matter of not having enough money. It’s a matter of using the money wisely. We are often just throwing money at it without knowing what is going to be effective.”

 Jon also said: 

There are “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.”

What he means is that we don’t know what everyone with IDD needs. 

Brett Bezio is a spokesperson. He works for the Arizona Department of Economic Security or DES. DES runs the Division of Developmental Disabilities. 

Brett said DES knows that the Enhanced Transitional Group Homes are not perfect. He said:

“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.” 

Brett said DES is working to make Enhanced Transitional Group Homes better. He said: 

“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.”

There are not enough staff to support people with IDD. They do not make enough money. They do not have enough training. This is a problem all over the USA.

A study said 7 out of 10 caregiving companies cannot do everything their clients need. 

This problem got worse because of the COVID-19 pandemic. 

Barbara Merrill runs ANCOR. ANCOR is a group for staff who support people with IDD. She said:

“[States are] closing the smaller three-, four-bed group homes and moving people into [larger] group homes. 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.”

This quote means some people with IDD are moving into homes with many other people with IDD. 

Many institutions in the USA are closing. 

Some people worry about institutions and group homes closing. They think there won’t be enough places for people with IDD to live. 

The University of Minnesota did a study in 2012. The study was about families of people with complex needs. The study said:

Families “often have difficulty in keeping jobs; can have limited opportunities for socialization friends and family due to social isolation; may be sleep deprived because their children are up all night; and may encounter frequent injury such as bites, bruises, hair pulled out of their heads and even broken bones. Even in these crisis situations, families wait for services.”

This quote was written 10 years ago. Families still have these problems today. 

Amy Hewitt is the director of the Institute on Community Integration at the University of Minnesota. She worked on the study from 2012. 

She remembered a story about a person with IDD who had many staff members. 

His staff did not have enough training. They were afraid of him. 

She said:

“The staff would run and hide in the bathroom, in the kitchen, in the staff area. There’d be five of them.”

Amy said the man was not part of his community. 

She said he stayed at home to exercise:

“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.”

Amy 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. From that kind of money, you could buy the best behavioral consulting the world had to offer.”

Wanting to help people with IDD is not enough. 

Bob Kafka is a disability activist. He works with ADAPT. He said:

“Having philosophical values is fine, but where the rubber meets the road is how you’re going to implement it.”

Mobilizing against mistreatment

Society does not know what to do with someone like Zainab. 

In the past, people with disabilities were:

• Kept by themselves
• Made fun of 
• Abused

Society learned more about disabilities through science and medicine. 

Learning more does not mean people’s lives got better. 

Dorothea Dix was an activist who lived in the 1800s. She wanted to make the lives of people with IDD and mental illness better. 

She thought they should live in institutions run by the government. 

Arizona’s State Asylum for the Insane opened in 1887. 

In 1912, 375 people lived there. Some of the people who lived there had IDD. 

Arizona wanted to build an institution just for people with IDD in the 1940s. 

But many people spoke out about how bad institutions were. Some people who spoke out were: 

• People who refused to fight during World War II. These people were sent to work in institutions instead. 
• Families of people with IDD. These families formed the National Association for Retarded Citizens. This is now called the Arc. 

The disability rights movement grew in the 1960s. President John F. Kennedy and his family supported the movement. President Kennedy had a sister named Rosemary. Rosemary had IDD. 

“Christmas in Purgatory” was a book of photos published in 1966. It showed how bad living in an institution was. 

In 1972, a TV reporter named Geraldo Rivera did a story about Willowbrook State School. Willowbrook was an institution in New York. This story showed many people how bad it was to live in an institution.

Nothing was easy

Zainab’s mom Cynthia knows the history of people with IDD. She lived it.

Her sister Jeannie had IDD. 

The bones in Jeannie’s skull grew together too early. That changed how Jeannie’s brain grew. Jeannie did not walk, talk, or sit up. She had trouble swallowing food. 

Jeannie lived with Cynthia and her family in Minnesota. They did not have any services to support Jeannie. 

Cynthia and Jeannie’s mom got sick from not having help to take care of Jeannie. 

Cynthia said:

“My mom was hospitalized with a nervous breakdown, and the doctor said they wouldn’t discharge my mom until my sister was gone.”

Jeannie went to live at Cambridge State Hospital. She was 5 years old. 

Cynthia and her family drove for 45 minutes every other week to see Jeannie. 

Cynthia said: 

“It was horrible. That was back in the day where you’d see people walking around in hospital gowns. They didn’t have clothes.”

Jeannie’s family made sure she had clothes. 

Later, Jeannie moved to a group home. She lived there for 18 years. 

Jeannie went out with her staff a lot. She:

• Got manicures and massages.
• Went to the bookstore to listen to music.
• Spent time outside. 

Cynthia said:

“We learned that we needed to call first. Not because it was, you know, you needed to give them a warning, but because they might not be there. I mean, as severely disabled as my sister was, they were gone all the time doing stuff.”

But Cynthia’s daughter Zainab does not do the things Jeannie did. She sleeps during the day. Her staff spend a lot of time on their phones. 

Cynthia used to work as a special education teacher. She worked at Faribault State Hospital in Minnesota. 

Cynthia moved to Arizona in the 1980s and worked at public schools. 

Cynthia and her husband decided to foster Zainab after their other daughter grew up. 

Zainab was a good fit because Cynthia knows some sign language. 

Cynthia always fights for Zainab to get what she deserves. 

Here are things Cynthia does to fight for Zainab:

• Writes to people who work in the government.
• Speaks at government hearings.
• Files complaints to the government.

Cynthia wrote a complaint to the US Department of Health and Human Services’ Office of Civil Rights. She said Arizona needs to pay for an ASL interpreter for Zainab. The office said she was right. 

Cynthia filed another complaint. She said Arizona did not give Zainab a day treatment program for 2 years. The Arizona Center for Disability Law helped Cynthia make this complaint.

Cynthia and other family members of people with IDD met with Nancy Barto. 

Nancy Barto is a conservative Republican state representative for Arizona. She is from Phoenix.  

Nancy said:

“It really brings it home when you spend time with these families and they go into so much detail. It’s extremely troubling to me that it’s continuing. … If they qualify it’s the state’s responsibility to provide that service. When we fail repeatedly then things have to change.”

Cynthia talked in front of the Arizona government in 2022. She talked about meeting Senator Barto and other families of people with IDD. She said: 

“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. I was shocked that there were others that have the same fear that our children’s safety and well-being is jeopardized by living in a DDD group home.”

These family members helped Arizona to make changes. Here are the changes the Arizona government made in 2022:

• More money to pay caregivers. Some people say it is still not enough money. 
• All people who work for the Arizona government get a 10% raise. People who work for the Division of Developmental Disabilities have not had a raise in 10 years. 
• Money to try out a new program to review group homes. 
• More staff and money for Adult Protective Services. 
• Adding “emotional abuse” to the list of things Adult Protective Services can investigate. 
• A new law that says guardians can put cameras in common areas of group homes. 

“Grand Canyon of service gaps”

Not everyone agrees on where people with complex needs should live. 

The US government changed what it means by home- and community-based services. Now these can include:

• Places where many people live together. 
• Places that are far away from cities like farms.

Jill Escher runs the National Council on Severe Autism. She lives in California. Some people disagree with what this group does. Some people do not like the name. 

Many people with complex needs have autism. Jill’s son has autism and complex needs.

He lives with staff in a house in the community that can be locked.

Many people in the disability community think any place where a person is locked in is not a good place to live. 

Jill says her son needs to be locked in for his safety. She said:

“Society basically wants nothing to do with my son. 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 is the executive direction of the Autistic Self-Advocacy Network. She works in Washington DC. 

Julia says she knows autistic people all have different needs. But she thinks everyone can live in the community. She has seen it. 

But it is not common for people with complex needs to live in the community. 

Julia said:

“I haven’t seen it scale effectively to a state or a series of states.”

That means there are not good state programs for people with complex needs to live in the community. 

Julia says people who have behavior issues are probably reacting to something happening around them. Remove the bad thing and they will not have behavior problems. 

But she said it is hard. 

“It’s not just putting a group home in a neighborhood, but actually supporting that person to have relationships. Even when we’re spending a million dollars, we’re not necessarily spending it on things that work.”

Julia does not use the words “severe autism” like Jill does. She says to use words that describe that person directly. You could say “complex behavioral needs.”

It’s a tricky conversation. 

David Axelrod used to work for President Barack Obama. He has a daughter with complex needs. Last year, David wrote an op-ed for the New York Times about his daughter. She lives in an institution in Chicago. 

Many people in the disability community were upset about David’s op-ed. They thought he was saying that institutions were good for people with complex needs. 

But even institutions won’t accept some people with aggressive behaviors. 

Jill said:

“Someone called it the Grand Canyon of service gaps. That’s right. That’s exactly what it is.”

That means that some people don’t get services because they have aggressive behaviors.

Joaquin Carson has complex needs. He and his family figured out how to get what he needs. 

Joaquin is from California. He is autistic. 

Diana is Joaquin’s sister. She is one year older. She says that she and Joaquin are like twins. Diana teaches disability studies at San Diego State University. 

Joaquin was diagnosed with autism in the 1970s. Diana says that people blamed autism on the autistic person’s mom back then. They said autism happened if your mom did not love you enough. It was called “refrigerator mom syndrome.” That means the mother is “cold” or unloving. 

We know now that this is not the reason people have autism. 

Diana says their mom loved Joaquin very much. Their parents spent a lot of money to build a swimming pool for Joaquin’s therapy. They wanted Joaquin to live with them. 

But Joaquin’s behaviors were not safe. They moved Joaquin to Fairview State Hospital. His mother was very sad and wore black after Joaquin moved. 

Later, Joaquin went to a group home. He started having aggressive behaviors. 

Diana said:

“I believe he was communicating that something was wrong at home, in his group home.”

Joaquin had to go back to the state hospital. 

Diana said the state hospital was very bad. She said:

“There’s no humanity in that kind of a situation.”

Diana moved Joaquin to live with her. 

Diana and her husband bought a house with a barn. They made the barn into a place for Joaquin to live. 

Joaquin’s home looks surprising. It does not have many things in it. The refrigerator is attached to the wall so it does not move. The television has plexiglass in front of it. The windows cannot be broken. 

There is no furniture that can be thrown. Joaquin’s bedroom only has a bed frame and mattress. 

But there are things that make Joaquin’s home nice. There are murals painted on the walls. 

Diana says they are lucky. Joaquin has had the same staff for many years. 

Brittany Merrill is one of Joaquin’s staff. She has worked with him for 8 years. Brittany says she’s lucky to work with Joaquin. 

She said:

“My sister is special needs, she’s developmentally delayed, and I have always been a part of that and caregiving for her and I cared for my grandmother till she passed away.”

Brittany works with Diana and has training to work with Joaquin. She knows how to support people who have seizures and people who are aggressive. 

She is learning to use a letter board with Joaquin. The letter board is how Joaquin communicates. 

Brittany meets with Joaquin’s team every month. Joaquin’s team has:

• A coordinator
• A behavioral therapist
• A nurse
• Caregivers like Brittany

Brittany makes $18.50 an hour. That is not very much money. And her job can be hard.

Brittany said:

“These jobs, they are mentally draining. You just have to make sure you take the breaks you need and try not to get overwhelmed because you will have those days that are harder than others.”

But she said it is worth it. 

She said:

“Our team – we are one big family. And once you have those dynamics you don’t want to give up.”

Joaquin does not say much. But people around Joaquin think he is happy. 

When Joaquin lived in the state hospital, his mom asked him what he wanted to eat when he got out. 

Joaquin said:

“Steak!”

On good days, Joaquin says:

“I like steak.”

Joaquin loves anything on wheels. He likes:

• Bikes
• Motorcycles
• Cars

In November 2021, Joaquin went on a drive to get a hamburger for lunch with his sister Diana. It was a good day.  

Diana and Joaquin’s mom died in 2015. She knew Joaquin was living a good life with Diana. 

Diana knows Joaquin is lucky. But what about other people like Joaquin? 

Diana said:

“That’s the million dollar question.”

Joy in small victories

 Zainab goes to the park in Mesa, Arizona. It is a pretty day. The park is near her house. 

She rides in a van to get there. Her staff come with her. She wears a harness to keep her safe in the van. 

Zainab does not want to talk to a reporter. 

She is ready to leave after a few minutes. 

Zainab leaves in the van. 

Zainab’s mom Cynthia stays at the park. She talks about her sister Jeannie. She talks about teaching special education. She talks about Zainab before she got sick in 2014. 

Everything has been hard since Zainab got sick. 

Cynthia 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.”

Now Zainab has a nurse with her 24/7. 

Cynthia thinks the nurse, Zainab’s behavioral coach, and the cameras in her house keep her safe. 

Cynthia watches the cameras all the time on her phone. 

But Zainab still gets hurt. She goes to the emergency room a lot. 

Cynthia thinks an institution might be the right place for Zainab to live.

Cynthia said:

“Some facility that could safely provide for all of her needs.”

Cynthia and some other disability advocates went to visit the Arizona Training Program. The Arizona Training Program is an institution. It is in Coolidge, Arizona. 

They wanted to see what an institution looked like. 

1,000 people used to live at the Arizona Training Program. Not many people live there anymore. No one else can move into the Arizona Training Program. When the last person who lives there dies, it will close. 

The people who visited thought the Arizona Training Program was a bad place to live. Cynthia did not think it looked bad. 

Cynthia said:

“I have some comparison and I thought it looked pretty good.”

Cynthia might have sent Zainab to the Arizona Training Program if she could have. She does not know if Zainab can be safe in the community. 

She said:

“I get that Zainab is difficult and she doesn’t fit anywhere.”

Cynthia will not give up on Zainab. She finds joy in small things. 

Cynthia said:

“We’ve reached the point of really exhausting medical options and really, really focus on the positive days we have and enjoy the activities we can do with her and the community.”

Zainab did ice skating this summer. She wore a Cinderella dress with a tiara and gloves. 

Sometimes Zainab cannot skate because of her seizures. Sometimes she can skate with help. 

Cynthia said:

“Anything we can do that’s something she is passionate about, we let her do it, as limited as it might be. It doesn’t matter. She counts the months till the next skating exhibition. She’s already talking about that.”

Rebecca Monteleone helped with this story. Rebecca teaches at the University of Toledo in Ohio. She rewrote Amy’s story in plain language to make it easier to read.

The post Why it’s hard to find safe homes for some people with disabilities appeared first on Center for Public Integrity.

By the time my second daughter was born, I’d been a journalist for more than a decade. As a general assignment reporter at the local alternative newsweekly, I didn’t have a beat. I could pitch anything. 

But as I looked at Sophie, tiny in her hospital bassinet, I realized that I had never written about Down syndrome. I had never met a person with Down syndrome. I wasn’t even sure what it was. 

That changed, slowly. For a long time, I couldn’t do any research, didn’t meet families of other kids with DS, couldn’t bear the thought of what might be coming. Sophie was teaching me what I needed to know. And then one day I was talking to my boss at the time, and shared a story idea about Down syndrome that I had handed to a colleague. 

“You need to do that story yourself,” he said.

“I can’t, because of Sophie,” I said.

“She’s why you need to do it.” 

So I wrote a story about a family in a Phoenix suburb that had three biological children with Down syndrome – then shared my own. As she grew, Sophie gave me idea after idea. I reported stories about charter schools that pushed out kids with disabilities and a Special Olympics program that put high school students with intellectual and developmental disabilities (IDD) on teams with typical peers with the goal of true integration. 

Now that Sophie’s grown, I find myself increasingly interested in the lives of adults with IDD. This reporting isn’t easy – and not only because people are afraid to talk and the state doesn’t want to give up records. Every time I hear a new horror story, I imagine Sophie in the same position. I know I’m not alone. As journalists, we can’t help but bring our hopes, fears and life experiences to our reporting. 

To be honest, I hate it. So does Sophie. During the pandemic – with the whole family locked in the house together – she’d often wander into the kitchen where I was on a work call and hold up a pad of paper. “To much,” she wrote. 

She’s right. It’s too much. And yet, it’s never enough. While there has been more awareness recently of the need to cover the disability community, journalists still aren’t always interested in covering people with intellectual and developmental disabilities. I get it. It can be hard to understand people with IDD, if they communicate at all. Family members are often hesitant to speak, or they have too much to say. Sometimes they’re not around. It’s delicate, messy work. 

And too often, we either write stories about unimaginable tragedies or heartwarming events, like a girl with Down syndrome getting asked to her prom by the captain of the football team. 

What about the grays? Like the rest of us, people with IDD don’t simply have good or bad lives. Usually, it’s a mixed bag. That is what drew me to this story – I want to show the real lives, including both the joys and struggles, of people with IDD. Zainab Edwards gets joy from ice skating. She struggles after she’s had a seizure. Both things are true. 

I’m not saying I ever achieve this – but my goal is to tell nuanced stories that capture what real life is for a population that remains largely hidden. Even in 2022, more than two decades since the U.S. Supreme Court ruled that people with IDD needed to be included in the community. 

Spoiler: They are not included. Not in meaningful ways. If they are, it’s rare. 

But just writing these stories isn’t nearly enough – I learn that every day, in different ways.

Sophie has taught me something I should have understood a long time ago, that people with IDD have their own narratives. After running a live reading series in Phoenix for five years, I started a storytelling program designed specifically for people with IDD. 

With other journalists and academics, I’ve explored ways to make the news more accessible to people with IDD. A group of us pushed successfully to have a news story for a mainstream media outlet translated into “plain language,” which we’ve done again for Public Integrity, and now we’re doing academic research to figure out how to take that work to the next level. 

I’ve also learned that, like the rest of us, every single person with IDD is different. Not everyone can share their story in a traditional way, or consume the news the way others do. That makes reporting challenging – but not impossible. 

It also means that – despite concerns from some in the disability community – it can be necessary to interview family members and others close to a person with IDD, particularly if the person cannot communicate. This gets really controversial, really fast. 

I’m grateful to be doing this work, to have the space and grace to experiment with reporting and accessibility methods, to hear the stories of so many people with IDD and those around them. And hopefully, to make some good trouble. 

But mostly I’m grateful to Sophie, who continues to be my teacher. 

The post How my daughter changed my reporting appeared first on Center for Public Integrity.