A Place in the World: Fueling Housing and Community Options for Adults with Autism and Other Neurodiversities
A Place in the World–sister study to 2009’s groundbreaking Opening Doors report–provides the foundational nomenclature for housing and service delivery models with the goal to further define market segments, establish best practices and guiding principles, and helps drive crucial partnerships that address pressing needs resulting from the current housing crisis.
The study serves as the definitive resource for the housing industry, scholars, direct service providers, policymakers, researchers and other stakeholders, driving the following actions:
Establish the universal language indispensable for innovation and the expansion of and investment in supportive housing developments throughout the U.S. and beyond.
Make it possible for housing developers and technology providers to better grasp the needs and nuances of this market and respond with innovative solutions and a range of price points that includes public and private funding sources.
Enable the collection, tracking and sharing of baseline and outcome data.
Facilitate major policy advances based on data—a key criteria—versus solely on ideology.
The study is informed through data collection, research, think tanks and collaboration with various industry thought leaders, culminating in a report, collateral materials and videos.
“There is not just a housing gap, but a legitimate housing crisis facing adults with autism and other cognitive disabilities. Distinct policy actions–and inaction–influence how we understand and measure the adequacy of housing and services for neurodiverse adults.”
“As with any complex issue, valid, nuanced data is needed to effectively respond to the housing demand of adults with neurodiversities–and there is still so much to learn.”
“We want ‘A Place in the World‘ to inform the decision-making happening in the community and at the same time inspire future scholars who select this type of research for their career paths.”
“Building communities that provide housing for all members of our diverse population is part of our mission. We are pleased to provide support for such a groundbreaking study and look forward to its results.”
“Wouldn’t it be really cool if we could develop a community that focused more on independent, semi-independent living in an apartment sort of setting where individuals would control their own space, make choices and also have staff supports?”
“Affordable housing, or the lack thereof, is the biggest issue… The only way to address that, we felt, was not to study it, but to increase the supply of homes that people could afford.”
“Helping individuals with a range of different abilities live the healthiest, happiest, most integrated lives possible drives me every day. I’m excited to be a part of advancing the healthcare delivery system to work better for everyone.”
“Housing and community options for special populations are today where the senior housing industry started 50 years ago. We still have much to do to create a marketplace of options, recognizing that, like age, diagnosis alone does not determine an individual’s home needs or preferences.”
“For millions of adults with autism, ‘the next empty bed’ should not be the only option. By bridging innovation across different industries, we can create an array of neuro-inclusive housing opportunities that benefit everyone in communities across the country.”
Desiree Kameka Galloway
“Good design for autism is just good design. It’s not that different from other design processes. We just need to add in a few more layers.”
HOUSING MARKET GUIDE
First Place–Phoenix, the first property of developer First Place AZ, offers 55 private apartments, along with active living and life-skills training for neurodiverse residents in a consumer-controlled setting. This intentional community and mixed-use development is also home to the First Place Transition Academy (a two-year program that helps neurodiverse adults build crucial skills for independent living and career-readiness) and the First Place Leadership Institute (a multidisciplinary, hands-on training center for professionals, educators, support staff and medical personnel, as well as a site for research and advancements in public policy). Thoughtful building design includes sensory-friendly and accessible qualities, relaxation and recreation spaces, transit access and security features. First Place provides various supportive amenities, including community life and health and fitness activities. In partnership with leading educational institutions, the First Place doctoral and postdoctoral fellowship for autism research supports scholars working in applied research, assessment and intervention, family support, service coordination, community integration, community development and public policy. As residents, fellows enjoy the benefits of a First Place home—a living, learning laboratory and an enriching life experience. First Place–Phoenix is a supportive, inclusive community where residents can make friends, have fun, live independently—and have a place of their own to call home.
PBS NewsHour Special
The intentional community of 29 Palms is an apartment property for adults with autism who have graduated from the First Place Transition Academy and seniors (55+) who do not have autism. Senior residents (who live in 15 of the 21 units) and Academy graduates (who live in the remaining six units) demonstrate the spirit of community through natural supports (e.g., residents with autism helping seniors with heavy items or offering technology assistance with cellphones, apps, computers; seniors helping residents with autism with cooking or problem solving when “life happens”). The renovated property includes sensory-friendly design, adaptable features, smart home technology and convenient access to public transit. The project is a collaboration between the Foundation for Senior Living and First Place AZ.
Individuals with I/DD are living longer than ever before , , but may need age-related memory care for dementia and Alzheimer’s disease as early as their forties , . In 2016, Noah Homes developed two 5,000-square-foot memory care homes for up to 20 people with I/DD, the first of their kind in the U.S. The memory care homes have a staff-to-resident ratio of 1-to-2, state-of-the-art technology, and opportunities to participate in groundbreaking techniques to fight Alzheimer’s, dementia and other age-related challenges.
The Yellow House is a single-family home located in the rural community of Carbondale, Colorado near Aspen in the Rocky Mountains. A family purchased an existing home for their young adult son with autism and renovated it in 2014 to meet his sensory and behavioral needs. Property management, residential support and day services are provided by Ascendigo Autism Services. The Yellow House is located in a quiet residential neighborhood that is walkable to recreational amenities (parks, recreation center, bike and hiking trails) and to Main Street with restaurants, shops, creative spaces, a movie theater, public transportation and other small-town amenities. The house has three bedrooms, each with its own full bath, and design features for sensory comfort, safety, independence, privacy and ease of maintenance. An accessory dwelling unit (ADU) is rented to an Ascendigo employee who provides on-call backup and property oversight. The landscaped yard has swings, vegetable gardens, a pond, spa and patio. The original residents were three adults with autism whose families shared equal operational control through a cooperative-ownership LLC. Currently, one person resides there, but the goal is to have up to three residents living and thriving in the house together.
Chapel Haven Schleifer Center offers student-housing apartments for young adults enrolled in the Center’s unique transitional programs designed for those with intellectual and developmental disabilities and other neurodiversities. Programs include the REACH program for adults with developmental disabilities and autism, and the Asperger Syndrome Adult Transition (ASAT) program for adults with social communication disorders. Each program has a unique set of supportive amenities. Chapel Haven recently added the Schleifer Adult Independent Living (SAIL) campus, an intergenerational apartment complex for program graduates who want or need lifelong support. SAIL enables residents to comfortably age in place in a non-institutional setting. This $45 million campus was built with universal design and, more specifically, sensory issues in mind. Chapel Haven also has a campus in Tucson, Arizona called Chapel Haven West, which offers a program for adults with social communication disorders.
The Arc Jacksonville Village is one of the first consumer-controlled planned communities for adults with I/DD in the U.S. Developed by the nonprofit The Arc Jacksonville, it offers affordable apartments with accessible design, smart home technology, and multiple recreation spaces and common areas. Residents have the opportunity to live independently in an inclusive and supportive residential community with peer-to-peer support. They enjoy robust on-site and off-site recreation options with walkable access to the broader community and public transit.
CASS Housing is a nonprofit developer that provides consumer-controlled, customizable, affordable housing with onsite supports for residents with neurodiversities and I/DD. Each property consists of a single-family home with three accessory dwelling units (ADUs) or single room occupancy (SRO) units (depending on zoning in the local jurisdiction), a common space and communal kitchen. A neurotypical steward (resident assistant) lives in the house (with their family as applicable) and adults with neurodiversities and/or I/DD live in the ADUs. Each ADU is a private residence with its own bedroom, bathroom and kitchenette. Residents choose their preferred LTSS providers. The steward checks in with residents once a day and cultivates community life through weekly shared meals and monthly outings. All CASS Housing properties currently offer an independent living model. In the next five years, the plan is to develop a planned community offering family living and family-plus models for adults with additional support needs. This expansion has been facilitated by impact investments, including from a CASS Housing resident and several residents’ families.
Crescent Commons is an affordable residential complex of the nonprofit developer Bergen County’s United Way/Madeline Housing Partners LLC. The complex has 17 affordable-lease apartments, six homeownership townhouses and a three-bedroom licensed group home. In this hybrid setting, LTSS in the group home is provider controlled, while LTSS in the apartments and townhouses is consumer controlled. The property is a short walk from downtown Allendale, Crestwood Lake and public transit (train and bus). Residents currently include families and neurodiverse adults.
Our Home – Cathedral Park (OHCP) is a cohousing-inspired community developed by the nonprofit Our Home, Inclusive Community Collaborative for people with diverse abilities, ages and income levels. With an anticipated completion date of 2022, OHCP will offer studio, one-, two- and three-bedroom condominiums architecturally designed to promote community connection and interaction, as well as the privacy of individual homeownership. The property offers both conventional market-rate ownership and subsidized units for qualified individuals. People who experience disability will live in 20-25% of the 28 units as homeowners or tenants. OHCP emphasizes community connection, belonging, cooperative decision-making, sharing, respect, diversity, reciprocity based on individual strengths and interests, and more. Its location offers convenient access to urban amenities, nature, public transit and Portland’s Cathedral Park.
The Marbridge campus offers a variety of residential options for adults with I/DD in a provider-controlled setting. Residents can maintain their preferred activities and friendships as their support needs change with age. The Village at Marbridge emphasizes independent and semi-independent living in a shared single-family home. Each cottage in the Village has three two-bedroom suites, a living area, kitchen, dining area and laundry room. Instructors provide training and oversight for independent living skills like shopping and cooking. The Ranch at Marbridge offers assisted living. Residents can live in a private bedroom in one of The Ranch’s four lodges or in a shared room in a dorm setting. There are several communal areas, including living rooms, dining rooms and an enrichment center. Staff help with activities of daily living and are available around the clock. The Villa at Marbridge offers 24-hour skilled nursing care in spacious shared bedrooms. This faith-based community offers community life, activities on and off campus, health and fitness activities, relaxation spaces and more.
The Faison Residence is an apartment community where a third of the units are rented to adults with autism and other developmental disabilities who are generally independent but need occasional assistance and supervision. The remaining units are rented to the general public. The property was developed by the Faison Center—a school for children and adults with autism—that wanted graduates to have more options for housing and services. As a hybrid setting for LTSS delivery, residents with autism and I/DD have access to smart home technology and other supportive in-home services in a provider-controlled setting while they transition from home-based services to more independent adulthood. The remaining units are consumer controlled. Neighbors look out for each other at this intentional and active-living community. The retail space of this mixed-use development is home to a health clinic, sandwich shop and salon, with security systems throughout the building. In addition to the on-site patio, community room and fitness center, residents have access to the Faison Center’s 10,000-square-foot, state-of-the-art community center for physical activity and entertainment.
This report was published in Fall 2020 and launched at the First Place Global Leadership Institute Symposium:
RECORDINGS FROM A PLACE IN THE WORLD LAUNCH SYMPOSIUM
Day 1 Recording: A Place in the World-Briefing
Day 2 Recording: Getting to Work-Together
In Collaboration With
Lead Partners & Major Sponsors
This seminal work would not be possible without the generous support of UnitedHealthcare Community Plan, the Phoenix IDA, the Arizona Community Foundation and Bill and Alyssa Sunderland, all leaders recognizing the value of housing as a major social determinant of health and the need for a common language to inform, improve and launch a marketplace of innovative housing solutions.
Leadership Advisory Board
An international Leadership Advisory Board representing industry luminaries is working together to develop strategies for how public, private, philanthropic and nonprofit sectors can build, grow and align communities to meet ever-increasing demand and serve the vast and diverse needs of individuals with autism and other neurodiverse populations. These thought leaders are defining—and defying—barriers and further exploring various models to significantly improve and increase access to supportive housing across the country.