Note to readers:
This is the plain language version of our story on finding safe homes for people with disabilities. You can see the original version of this story.
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.