For many of the residents who live at First Place — as its name suggests — it is the first time many of them are living on their own. Lauren Heimerdinger, 35, is one of those residents.

She moved in when the complex, built and designed for people with autism spectrum disorder and others who are neurodivergent, opened in 2018. Heimerdinger was part of the original focus group that provided feedback about what they’d like to see from a place like First Place.

This, plus a push from her parents, led Heimerdinger to try living on her own. “Since I’ve been a part of it from the very beginning,” she said, “I thought it would be nice for me to live here.”

She was “very scared, very anxious and nervous” when she first moved in. “I basically kept saying, ‘I don’t know how I’m going to do this. I don’t you know, I don’t see myself doing this.’”

But pretty quickly, she adjusted. The people who live there, the community that has formed and the help she gets have all helped her adjust — and they’re also why she has stayed.

The complex has served as a “proof point” that people with autism or other intellectual or developmental disabilities (IDDs) can live on their own, according to First Place’s President and CEO Denise Resnik.

The key to this successful housing starts with the environment. All areas, from the fitness room to the teaching kitchen, are mindful of sound and light sensitivities.

Then comes the support. The First Place staff has special training to work with people with different disabilities. Residents can access vocational training and an on-site health clinic.

With these tools and encouragement, First Place helps foster a meaningful community. Residents have a robust calendar of events to choose from daily — everything from yoga classes to book clubs, Phoenix Suns watch parties to happy hours.

And First Place is located in a central location in the city near public transportation, which is crucial for residents going to school and jobs.

“This is a rarity what you see here at First Place … it’s consumer-controlled, they signed leases, and they’re living here,” said Maureen Casey, director of The Daniel Jordan Fiddle Foundation Center for Public Policy and Colonel Harland Sanders Center for Applied Research at the First Place Global Leadership Institute.

Independent living and its challenges

In the U.S., over a million adults with an IDD live with a caregiver over the age of 60, according to a 2020 report from First Place, ASU’s Morrison Institute for Public Policy and others. Further, about 75% of this population lives with family, according to the report.

When caregivers die, the question then becomes what happens to the person they took care of, said Toyosi Adesoye, a public policy graduate student at ASU. Adesoye is an ASU Fiddle Fellow working with the Morrison Institute and First Place.

For many with an IDD, when a caregiver dies, they end up homeless. “We’re seeing that 50% of the folks that are over at the [homeless] shelters have learning disabilities or intellectual developmental disabilities,” Casey said.

First Place was designed to give neurodivergent people the opportunity to live independently in an environment truly designed for them.

The complex is a model of what inclusive housing for neurodivergent people can look like and is the first of its kind in Phoenix. But increasing the accessibility of First Place and complexes like it to more people is a key next step, Casey said.

Resnik said, “It was very important to us that we do what was attainable at the time with the bigger vision of where we want it to go … impacting broader populations with autism and other neurodiversities.

A year-long lease at First Place costs $4,200 a month. The apartment’s price includes one bedroom, utilities and appliances. It also includes support services like vocational training, money management and more. In Phoenix, the median rent was around $1,200 for a one-bedroom, the Arizona Republic reported in March 2022.

That high price can be a challenge for some First Place residents, like Jed Young. And it might be a barrier to even consider the complex as an option.

During a listening session hosted by reporters with the complex’s residents, Young said money was a major challenge to living there away from family. “It can be difficult at times, and it does add stress to the living situation,” Young said.

The complex also has just 55 units, and its leadership team recognizes that First Place on its own is not enough. For them, the next steps are clear: Sharing the practices it has established and working to provide them to even more people.

“We recognize that we need to push some of those levers with funding and policy to make sure that these kinds of supports are available to everybody that needs it,” Casey said.

To push those levers, Adesoye said First Place is developing a proposal with two parts. The first tackles housing vouchers for adults with IDDs. First Place also hopes to obtain and disperse government funding to organizations providing support services for adults with an IDD, like the ones that have helped Heimerdinger during her time there.

Margaret Kilman is a senior program manager at the Corporation for Supportive Housing, a nonprofit working to provide housing access as a starting point to building healthy communities. She uses more than 10 years of experience developing and implementing homelessness and housing programs and spent time as the senior policy advisor and program administrator for Maricopa County’s homelessness programs.

“We have a supply problem for affordable housing,” Kilman said. “There are things that states, cities and counties can do. It’s a matter of having the political will to do them.”

In February, State Reps. César Chávez (D-Maryvale) and Steve Kaiser (R-Phoenix) hoped a bill they drafted would streamline zoning regulations and put more money in the state’s Department of Housing Trust Fund to curb rising housing costs. The bill set density and height thresholds for new construction and proposed almost $90 million be reserved to help those experiencing homelessness get into permanent housing. The bill ultimately was tabled and transformed into a committee to study the shortage of housing options.

The bill would have done what many have pointed to as the root of the problem. It would have made it easier to build homes that would help eliminate homelessness.

“There are a number of strategies that are showing great results,” Kilman said. “But in many communities, the problem has become so severe. … I don’t think that those (supportive housing investment programs) are necessarily going to solve the problem because we’ve got some structural deficits that we need to overcome, primarily housing production.”

Organizations step in to fill gaps in support left by government services

In the absence of the state and federal support that has been held up or gone unused, the responsibility to fill in gaps in services falls to nonprofits and other non-governmental organizations.

Organizations like Phoenix Rescue Mission, a faith-based organization that works toward finding solutions for people experiencing homelessness, addiction, hunger and other trauma, have faced the lack of support firsthand. There, case managers work to find people in need and connect them with resources at the mission and at organizations across the Valley, depending on their needs.

Case managers more often than not have already gone through one of Phoenix Rescue Mission’s programs. Spiritual recovery is at the center of the mission’s programs that include work-for-hire partnerships, food bank coordination, addiction treatment and finding people permanent and short-term housing.

Different from many city or state services, Phoenix Rescue Mission is staffed by people who have experienced the housing crisis — they work with people experiencing homelessness daily and have seen Phoenix’s lack of affordable housing worsen in the last decade. One of them is Mindy Gray, a case manager at the mission.

First Place’s hopeful proposal

Obtaining accessible housing is a challenge for many neurodiverse adults. Adesoye first points to low education levels, which can lead to “either unemployment or underemployment” — and leaves many at a higher risk of poverty or being homeless.

But possibly the biggest challenge is navigating the system to find assistance in the first place.

Currently, programs within Medicaid and the Department of Housing and Urban Development can provide help.

“But none of these specifically target the population of people with autism, or even with intellectual disabilities or developmental disabilities,” Adesoye said.

Now combine that with the complexity of applying; many people with autism struggle to qualify for this government assistance.

To be eligible for support from Arizona’s Division of Developmental Disabilities, an individual must have three of seven functional limitations: language, learning, self-direction, self-care, mobility, capacity for independent living and economic self-sufficiency.

“Very often, people with autism don’t get that third one,” Casey said. “They’ll get two, but they won’t get enough on the third one to be eligible.” This leaves them without the support they need and consequently vulnerable to becoming homeless.

Adesoye said another issue is time.

First Place’s proposal, “Housing Opportunities for Persons with Autism, Intellectual or Developmental Disabilities” (HOPAIDD), aims to help both those who cannot get services and those stuck waiting for them.

Half of the program funds would create housing vouchers for people with autism or another IDD. The second half would pay for competitive grants for housing developments or support services for people with autism. Adesoye said applicants would have to show how they would use the funds before being approved for them.

Heimerdinger said she pays around $4,000 a month to live at First Place — and her dad pays for about half. Even with help from family, she has dipped into her own savings to pay her rent.

Typically, Adesoye said, a person using a housing voucher pays for about 30% of their rent, while the government covers the remaining 70%.

Rental assistance through a housing voucher “would greatly benefit me,” Heimerdinger said. It would also allow her to begin rebuilding her savings.

Adesoye said they built the HOPAIDD proposal around tangible items that could be implemented into the current system. “We have to work within the already existing systems so that we’re not creating something right out of the blue that is impractical, or that would require too much coordination,” she said.

She said there were two existing options: go through Medicaid or HUD to develop the proposals. HUD made the most sense, she said, because it would specifically address the housing issues and there have been other successful supportive housing programs within it.

First Place’s leaders expect to publish a final proposal for HOPAIDD by August. Once released, the task becomes getting buy-in from policymakers to implement the program.

Getting that support, Adesoye said, “looks like slowly building consensus that not only is there a problem, but this is a feasible solution to that problem.”

There is no timetable for when the proposal could be implemented. Adesoye said they hope the process goes as quickly as possible. “However,” she wrote in an email, “nothing is guaranteed.”

Going forward

Sitting in a circle as part of a community listening session in February, Heimerdinger sat with three other First Place residents and discussed their experience with housing since living at the complex.

For all involved, it was a chance to reflect on living at First Place and the challenges they faced living on their own. They each echoed similar problems: the cost of living and the struggle of getting society and employers to be inclusive toward people with IDDs like autism.

First Place, the residents said, is one of the few places where there is an understanding, but there is still work to be done to expand that understanding into society.

Getting to the point where society has more inclusive housing and employment opportunities will take time. But with models like First Place, there is an example to a better path. And if its proposals can be implemented, there is more potential for neurodiverse adults to receive the help they need to live on their own.

“While we recognize that this proposal would not solve all the challenges facing this population, or even help everyone, we still hope to try to make a difference, even if for a few,” Adesoye said in an email. “The goal at the end of the day is to take at least the first step to create affordable supportive housing and more options for supportive amenities for neurodiverse adults.”