Housing is key to creating community for Arizonans with IDD. But is it enough?
A KJZZ News investigation in 2022 revealed that despite decades of reform, people with intellectual and developmental disabilities are still at risk for abuse and neglect. Advocates say the lack of safe, affordable housing is one of the biggest barriers to success. Efforts are being made. But is it enough?
Like a lot of young people, Ava Rosenberg is getting ready to move into her own apartment. But she’s needed a little extra help navigating the independence that comes with adulthood. Rosenberg is autistic. She graduated from a small, private high school designed for kids with learning differences. Now the 21-year-old is finishing a program in Phoenix to help her learn everything from cooking skills to using public transportation.
"I think just adjusting to not like having my parents do stuff for me, that was like the hardest part," Rosenberg said.
The two-year transition academy is one of the services available at First Place, a housing complex for people with autism and other developmental disabilities. Located near Third Street and Thomas Road in central Phoenix, First Place is designed to give someone like Rosenberg as much independence as possible — along with supports she needs to be successful.
This can get tricky — and expensive.
Rent is $4,400 a month for a one-bedroom apartment at First Place. Amenities are plentiful, including on site medical care, a training kitchen with state of the art equipment and round the clock security. Living spaces were carefully designed. Sensors by the oven beep if a resident strays too far from the kitchen.
A drain in the middle of an apartment’s bathroom floor will stop flooding if someone accidentally leaves water running. There are thoughtful spaces throughout the building — a quiet room for residents experiencing sensory overload; reading nooks; an area outfitted with more Legos than you thought possible.
Even with the price tag, all 70 spaces at First Place are just about full. That’s a tiny percentage of the estimated 150,000 people in Arizona who have intellectual or developmental disabilities, often called IDD.
A 2022 study by the people behind First Place showed that more than a quarter of people with IDD in metropolitan Phoenix are living with a caregiver who is over the age of 60.
This is an unintended consequence of a 1999 U.S. Supreme Court ruling that people with intellectual and developmental disabilities like autism or Down syndrome should live in the community — an institution — whenever possible. Today, almost every person in Arizona with IDD lives in some kind of community setting — with family, on their own, in a group home or adult foster home.
But as reported in UNSAFE, a recent series by KJZZ News, living in the community does not guarantee a high quality of life. An analysis of 10,000 incident reports about people with IDD revealed hundreds of allegations of abuse and thousands of concerns about neglect. Almost all of these people live in the community.
Lynne Tomasa is a researcher in Tucson who focuses on issues impacting people with IDD. She says housing is a huge factor in ensuring a good, safe life. Her work has revealed that people are stymied, unsure of what to do to keep their loved one with IDD safe and happy.
"One of my big areas of concern is that families were not planning for the future, not only for themself, but for their loved one. And a lot of it came down to their hesitation, their concerns about the availability of appropriate housing," she said, adding that it’s the kind of thing that can impact any of us
"Think of just anybody, whether you have a disability or not," Tomasa said. "As we get older or as we face different transitions, like friends moving, family structures changing, we need to be able to maintain and actually develop more communities because it's individuals in our communities that will be our, the eyes and ears and who are going to be able to report if they notice that anything has changed or there's anything unusual."
"One of my big areas of concern is that families were not planning for the future, not only for themself, but for their loved one."
— Lynne Tomasa
That means it’s important for people with IDD to have jobs or other regular activities that get them out of their home and interacting with people in the community. And it means they shouldn’t only be surrounded by other people with IDD.
That’s become a sticking point for facilities like First Place, which have not been able to qualify for government funding because they provide "congregate care," rather than housing people with IDD in small settings.
And yet for a family that can afford it, a setting like First Place might make more sense than anything.
John Micheaels knows a lot about the challenges of providing safe housing for adults with IDD. As a lawyer, he has represented many families, most notably the woman who was sexually assaulted and gave birth at Hacienda HealthCare, a Phoenix institution, in 2018.
He is also a father. Micheaels and his wife, Mary Lou, have been trying for a long time to find a housing setting for their daughter Carrie, who has a disability similar to autism and is in her mid 30s. Carrie has attended One Step Beyond, a day program for people with IDD, for many years. The Micheaels have teamed up with the program’s organizers to create a housing program.
"The Hacienda case and actually the other work that I've done has given Mary Lou and me the financial means to make a significant pledge and commitment to One Step Beyond in order to see that this housing for our daughter and for others like Carrie, who have intellectual and developmental disabilities, do have what my wife affectionately refers to as a forever home."
The Micheaels have pledged $1 million dollars toward the purchase of land. The idea is to build units that will be individually owned. That would keep monthly costs fairly low. But the overall cost would be prohibitive for many. And then there’s the issue of the government. Medicaid has frowned on congregate housing options like First Place or this one. So have advocates like Jon Meyers, executive director of Arizona’s Developmental Disabilities Planning Council.
"I can tell you that the evidence is pretty clear that individuals who live in inclusive, diverse environments thrive," Meyers said.
The modern congregate settings concern Meyers, who says they might limit opportunity.
"It's about having opportunity. It's about enjoying life. It's about making choices. It is about really being free to experience the world as everyone else can experience the world."
But in the end, Meyers says, it’s also about letting the person with IDD make their own decisions whenever possible. And he acknowledges that his opinion isn’t the only one that matters.
"We talk a lot about self-advocacy," Meyers said. "We talk a lot about self-determination. And, you know, we can't talk out of both sides of our mouths. We can't say that people have the right to self determine when the choices they make only agree with the choices we would have them make."
Parker Lane is 31. On a recent Friday afternoon, he took a break from activities at One Step Beyond to talk with his mom, Shelly, about his own wishes when it comes to housing.
Parker has Cohen syndrome, a rare genetic condition that impacts his eyesight and motor skills.
A couple years ago, Parker moved out of his family’s house in Phoenix and into a group home. It’s OK, but Lane would rather be with his friends from One Step Beyond. He is excited about the prospect of a large housing complex.
"Hey, guys," Parker said, "you're part of an inclusive world. We're not. Please not be scared about your disability and do not be scared about your hopes and dreams. Like if you want you can talk to me, you can talk to me. I'm here. I'm not scared to talk about my disability with anybody. I just like to be, I wanna be happy. Not so, not like —"
"You wanna belong," Shelly said.
"I just wanna belong," Parker said.
"I just wanna belong."
— Parker Lane
Shelly says that Parker has struggled to fit in and make friends since high school.
"The depression that these guys have is because they don't have the ability to reach out. They don't know how to reach out. You get to this age, the group is gone. All the boys that he grew up with, they're all amazing boys, but they all have their own lives and they kind of forget," said Shelly. "So I think having that facility, the apartments, you know, they would have groups and they would be friends."
"I just want to tell people it's okay to be who you are and never change it because a lot of people judge us for our disability. It's sad and sickening because I got bullied in school and I got bullied in school for my disability and it was so stressful," he said.
"But you also create an incredible group of friends," Parker’s mom reminds him. "He is a completely different person when he is independent, when he's around his group of friends. Yeah, he blossoms. It's amazing when he's able to be just even here with the program, there's a sense of belonging and a sense of community. And to be able to walk out his door and to have that, instead of having to seek out and find things to be able to walk out the door and have them all be there with group activities."
"Like, dancing," Parker added.
"Nobody calls, you know, for parties and that kind of thing, and this is their own party," Shelly said. "This is going to be their community."
For Ava Rosenberg, Parker Lane and many others — it’s a start.
Housing is vital, but it’s just one component in a healthy, happy life for a person with intellectual and developmental disabilities. On Saturday, Feb. 18 at 11 a.m. at Changing Hands Bookstore in Phoenix, join Parker Lane and others for a celebration featuring musical performances, storytelling and conversation at Love Is Always. This project is supported by the USC Annenberg Center for Health Journalism.
EDITOR'S NOTE: This story has been updated to correct the cost of a one-bedroom apartment at First Place. Rent is $4,400 a month.