Opening Doors: Home Options for Adults with Autism & Other Special Abilities

 

April is Autism Awareness Month and a time for reflection on progress made since our son Matt’s diagnosis 23 years ago. Thankfully, much has changed since we were told to plan to institutionalize him–and much still needs to change to respond to the housing demand at our doorstep.

Matt represents a generation of more than 500,000 U.S. children with autism entering adulthood this decade. In many ways, I’ve been planning for what happens when the school bus stops coming almost from the first day it arrived. Where will he live? How will he be safe? How can we be sure he’ll be happy, healthy, productive and not sliding backwards?

The reason for my focus? Fear. Yes, this is what I have feared the most for Matt and for so many of our transitioning adolescents and adults. Fear that someone who doesn’t know them will be making decisions about their critical transitions and their futures.  Fear that our options will be limited and not right for our loved ones. Fear that we will not be here to help them transition to homes away from our family homes and to a place where they can build their adult lives, continue to learn, make friends and contribute to the very community that supports them.

Enormous challenges like this one cannot be addressed alone. We must work together to create new and more innovative options bringing together all sectors—public, private and charitable.

Through the Southwest Autism Research & Resource Center (SARRC) and groundwork by extraordinary leaders from charitable groups, private industry and all levels of government, Greater Phoenix has created a supportive community unlike any other, setting the stage for what comes next: new residential options and safe, nurturing communities to call home.

During the past 16 years, SARRC, Arizona State University, the Urban Land Institute, Arizona Department of Housing and many of the most respected trail blazers in real estate have studied 100 existing residential options across the country, involved more than 100 local family members and individuals with autism in focus groups, co-hosted a national town hall that included 16 cities and evaluated new and creative approaches with leaders from all sectors across the country. Here’s what we’ve learned:

We cannot build homes for 3 or 4 people at a time and accommodate effectively for the 50,000 children with autism entering adulthood annually, in addition to affected adults aging into mid and later life.

We must take full advantage of new and significant advances in technology and design, and a generation of children with autism empowered by early intervention.

We must also separate the supportive services from the real estate ownership to maximize choice for residents, allowing them to select service providers that best meet their needs today and as they change over time.

We cannot rely exclusively on government with its dwindling resources.

We need more choices. There is not a one-size-fits-all solution.

Based on our findings, First Place AZ™ was established in 2012 to develop solutions that disrupt the current housing and services picture. As an independent sister nonprofit to SARRC, First Place is focused on community and property development with the mission of empowering people with autism and other special abilities to thrive, through homes, jobs, friends, lifelong learning and a supportive community.

First Place View_01

Our first model mixed-use residential property, First Place-Phoenix, is set to break ground this year. Sited in the heart of the city, property residents and students will enjoy all the benefits of urban life: public transportation, employment, health care, life long education, recreational opportunities and diversity. Importantly, First Place is not congregate care, assisted living, a licensed facility or a medical home. It’s also ‘disability agnostic.’ It’s about matching the interests and needs of individuals with the right property location, design and amenities. It’s about making for a good place to live – all the things Home Matters speaks to – for every American.

First Place-Phoenix includes the First Place Apartments for residents, a Transition Academy for students, and a National Leadership Institute for the training and education of direct support providers and health care professionals, as well as a home for research, including graduate and doctoral fellows from ASU and Teach For America alumni. All intentionally brought together to foster a sense of community and belonging and a place where adults with autism or other special abilities can thrive.

Residents may lease the 50 studio and one- and two-bedroom First Place Apartments, which are supported by a portfolio of independent living services and property amenities that support greater independence, safety, security, health and wellness, smart home technology, community connections and all the comforts of home. The Transition Academy represents a two-year tuition-based program empowering young adults with independent living, career readiness and interpersonal skills. Residents are not required to participate as students in the Transition Academy; however, students may choose to become Apartment residents following completion of their program.

Together we must advocate for more options that are person-­centered and based on individually defined preferred settings, support needs and meaningful life goals. We need more options so individuals and their families have more choices for what works best for them. We have an enormous opportunity to create more choices through service and program offerings, price points, amenities and opportunities that enable adults with special needs to live with others who share their interests, including those with and without disabilities. It’s time to pioneer approaches focused on market segments and matching of residential offerings and supportive services with demand across North America.

Since Matt’s high school graduation, we’ve worked hard to fill 168 hours weekly. Thanks to SARRC’s Rising Entrepreneurs Program, Matt is the proud lead baker of SMILE Biscotti®, which stands for Supporting Matt’s Independent Living Enterprise. In just over two years, Matt has increased his work stamina from 60 minutes to 6 hours, engaged 6 co-workers and sold more than 125,000 biscotti.

Consider the power of hope, of setting our sights on a future we work for, save for and that we don’t fear. Consider what we can do as a good neighbor, in our places of work and worship, and through our civic and nonprofit organizations to help people like Matt and all our kids live, work, play and succeed as valued members of our society.

Substandard Housing: The Choice No American Should Have to Make

 

I heard a story recently about a man who lived in a crooked apartment. The floor was sloped, so that if you placed a bottle at one end of the room, it would roll downhill until it hit the other wall. The apartment was rent-controlled, and the man who lived in it was terrified that rent control would go away because if it did, he was convinced the landlord would fix the floor so he could raise the rent. The man liked the fact that his apartment was crooked because it was the only reason he could afford to live there.

It’s all about tradeoffs. We can’t all get what we want. So we make sacrifices. For some of us, maybe that means we can’t have the big house with the backyard. For others, it’s a flat floor.

For Lamar, it was clearing maggots out of a kitchen. Lamar and his two sons were looking for an apartment on the North Side of Milwaukee when the sociologist Matthew Desmond caught up with them for his new book Evicted. When Lamar finally found a two-bedroom place he thought he could afford, it had “maggots sprouting from unwashed dishes in the kitchen.” He took it. “I’m blessed,” he said.

It may surprise you that flat floors and maggots in kitchens are tradeoffs facing Americans seeking affordable housing today. Aren’t there building codes, you ask? The answer is yes. A few generations ago, we decided to draw the line at certain basic requirements every home should have. But a complete answer goes beyond that and gets a bit complicated.

Chicago_in_Flames_by_Currier_&_Ives,_1871

The first building codes date back to ancient times, when a contractor could be put to death for building a house that collapsed on its owner. More recent regulations evolved out of citywide disasters like the Great Chicago Fire in 1871 and the 1906 San Francisco earthquake. These precautions protected residents from dangers they had little expertise to prevent on their own.

The regulations that are supposed to protect people like Lamar, however, weren’t adopted until the mid-twentieth century when Congress made it a national priority to eliminate substandard housing in the major cities. And in the years following this focus, the extent of substandard housing decreased dramatically. The number of homes lacking heat and indoor plumbing has fallen sharply. The incidence of lead in the home has similarly declined in significant ways.  So we have seen progress, especially in rural areas.

But here is where we come back to tradeoffs, because there were costs.  Many of the so-called “urban renewal” efforts that drove a part of the change involved slum clearance and neighborhood “reclamation” efforts that resulted in widespread displacement of poor families from their homes by force. Within these communities, urban renewal came to be known as “Negro removal.” For many residents, the experience was so traumatic that their resentment continues to this day.

Further, in spite of the progress we have seen, the past is not entirely past. Just ask Arleen and her sons Jori and Jafaris. When they first entered Desmond’s story, they were living in a homeless shelter. Then they found a house. The original coat of paint had almost completely disappeared from the exterior, and a new coat covered less than half the house before the painter, apparently, gave up.

“There was often no water in the house,” Desmond writes, “and Jori had to bucket out what was in the toilet. But Arleen loved that it was spacious and set apart from other houses. ‘It was quiet,’ she remembered. ‘And five-twenty-five for a whole house, two bedrooms upstairs and two bedrooms downstairs. It was my favorite place.’”

The usual response to substandard housing is to get the people out of the poor living conditions. Nobody should be living in a place with maggots or toilets that don’t work.  Indeed, this is what happened to Arleen after only a few weeks of living in her “favorite place.” The city designated her house “unfit for human habitation” and made her vacate it.

The problem is that eviction works in this case only if there is another unit above the minimum standard that is affordable to the family forced to move. And the narrative from Evicted shows that there often isn’t one.  In these cases, all eviction does is move a low-income family from one substandard home to another.

Sadly, I fear this problem is only going to get worse.  The housing stock is aging. In most large cities, rents are becoming increasingly unaffordable. Many cities are restricting construction of housing that could meet the needs of a growing population. As demand outstrips supply, it’s inevitable that more and more families will fall into this vicious cycle, unable to afford anything other than substandard housing.

If we accept this premise, we are left in a tough predicament. Because enforcing building codes improves the quality of rental housing, it will have a negative implication for affordability.  Every homebuyer knows that quality and price are inextricably linked, and this is true in the rental market as well.

The implication is that we can’t think about building code enforcement without also thinking about and addressing affordability.  For too long, public policy has treated them as separate problems. And it has left people like Lamar and Arleen to fend for themselves and select from the worst that our housing has to offer.

Housing policy must embrace this mandate—to banish substandard housing without banishing the long-suffering residents trapped in its sinking clutches.  Because there are certain tradeoffs no one should have to make. It shouldn’t be too controversial to say that everyone deserves a home with running water, no maggots, and a flat floor. A quality home should not be out of anyone’s price range.