A growing group of developmentally disabled children and young adults will need housing that allows them to live away from their families but still provides the medical, therapeutic, and vocational support they need.
During the next 15 years, more than 500,000 children with autism-related disorders will become adults, many cared for by aging parents who likely will not outlive them. Adults with autism currently have few options for housing apart from their families. They are too old to receive continued care from the special education departments of public schools and too fragile to live on their own with no supervision.
The Phoenix-based nonprofit Southwest Autism Research & Resource Center (SARRC), partnering with ULI Arizona and Arizona State University (ASU) to research and develop housing plans for adults with the developmental disorder, in February released Opening Doors: A Discussion of Residential Options for Adults Living with Autism and Related Disorders. The study, funded by the Pivotal Foundation, the ULI Foundation, and SARRC, focuses on creating models for affordable residential developments that can be replicated for this expanding population. It addresses current and projected demand for lifelong living options; explores the financial catalysts needed to spur new investment by the private and public sectors; reviews support services provided in the homes; and sets forth design goals and guidelines for residential developments and homes serving individuals with autism-spectrum and related disorders.
According to Opening Doors, adults with autism and related disorders, and the families who are seeking housing for them, face a complicated system that includes vocational rehabilitation services, Medicaid, and disconnected government agencies, as well as a lack of appropriate residential care options beyond keeping the maturing children at home or within institutional settings. The report examines housing for adults with autism spectrum disorders, a term that refers to a group of developmental disorders usually first diagnosed in early childhood, including Asperger’s syndrome.
“The dramatic increase in the population of affected individuals gives rise to serious concern among families, service providers, government, and the community at large that residential services for post-school-age adults with autism and developmental disorders must be created as an integral part of a healthy community’s housing plan and opportunities,” report editor Denise D. Resnik, SARRC cofounder and mother of a 19-year-old son with autism, writes in Opening Doors.
It costs $3.2 million to take care of and house an individual with autism through his or her lifetime, a Harvard School of Public Health study from 2006 estimates. “Our goal is to respond to the pressing question that’s looming today for millions of parents of children with autism and related disorders: who will care for my child when I’m no longer able to do so?” says Resnik.
The ULI/SARRC/ASU study focuses on developing residential models that offer high-quality and safe housing options that support maximizing independence to the greatest degree possible. The research identifies a shortage of turnkey models available to replicate. New models, following the design guidelines and other recommendations included in the report, can be built from the ground up or by renovating an existing home or building.
Financing can be a challenge for all types of new housing projects, but the study finds that current sources of funding for housing designed for the developmentally disabled are limited and cumbersome to obtain. “We must restructure the way existing government funding is allocated to housing resources for the developmentally disabled in order to grow a sustainable real estate supply over time,” said George Bosworth, ULI Arizona executive director.
To launch more residential development for adults with autism, financing partnerships are needed that involve the private, public, and nonprofit sectors, the report says.
“Although a variety of sources for capital funding exist, organizations most often use two or three sources to cobble together a workable financial model for the projects,” says Joe Blackbourn, SARRC board member and former ULI Arizona chairman.
Research into housing for adults with autism and related disorders began more than six years ago when SARRC, ULI Arizona, and ASU began studying more than 100 residential programs across the United States and around the world seeking the most successful projects.
The Opening Doors report introduces builders, architects, developers, planners, public officials, and others involved in residential development to the conditions of adults with autism that demand a new approach to the design and development of homes, says Sherry Ahrentzen, associate director of research at ASU’s Stardust Center for Affordable Housing.
Besides the physical space and the financial framework, Opening Doors looks at the services in the home and those needed for community integration, which include jobs and other experiences that increase independence and add to quality of life.
“Directed by ten resident-based design goals, the design guidelines— from neighborhood amenities to technological assistive devices in the homes—provide a robust platform that architects, housing providers, families, and residents can use to identify and select design features that best respond to specific needs and aspirations of residents,” says Kim Steele, associate professor of landscape architecture at ASU’s Herberger Institute.
Among the design goals recommended in the report for projects to house adults with autism spectrum and related disorders are the following:
- Safety and security. Issues range from providing appropriate security systems to using nontoxic materials.
- Maximized familiarity and clarity. Changes and transitions can be problematic for adults with autism-related diseases. Design strategies should include logical spatial layouts and use of materials familiar to the residents.
- Minimized sensory overload. Spaces should be designed to be quiet, visually calm, well ventilated, and lit appropriately for each resident. Also, opportunities should be provided for residents to easily control their social interactions and privacy.
- Promotion of wellness. The physical design should promote healthy living through the use of nontoxic materials, natural light, and good ventilation.
- Enhancement of residents’ dignity. The housing should be situated in a neighborhood that accepts diversity, and home designs should allow residents to personalize their spaces.
Developers and planners can better understand the design goals if they understand the characteristics that often accompany autism-related disorders. Among the typical characteristics are difficulty understanding language or social cues; limited speech to excessive speech, often focusing on one topic; difficulty relating to others; intense interests; repetitive behaviors such as pacing or rocking; sensitivity to light, sound, smell, taste, or touch; anxiety; lack of fear; difficulty with change; strong visual skills; excellent long-term memory; intense concentration; and music, math, technological, or artistic abilities.
Participants in the research for housing adults with autism-spectrum disorders say the report can serve as a guide for developers, nonprofits, and medical support groups around the globe trying to provide safe, nurturing, and comfortable housing for individuals with learning and physical disabilities.
Among the report’s recommendations are the need to:
- conduct specific national surveys;
- create an interactive database of housing options;
- develop and test housing models, including soft infrastructure support service models; and
- increase and systematize capital resources from public agencies, which involves increasing capacity, advocating for increased federal support, modifying the Low Income Housing Tax Credit program, and capitalizing on funding available through community development financial institutions, among other sources.
Supporters of the study are already scouting properties in metropolitan Phoenix that can be renovated to provide high-quality affordable and safe housing for adults with autism-related disorders. The sites are near important services, including mass transit, libraries, stores, education facilities, and employers hiring adults with autism.