On the horizon
On the horizon
Abstract and Keywords
As awareness of the needs and aspirations of people with autism grows, new ideas and innovations that assist autistic adults live the lives they choose have begun to appear with increasing regularity. This chapter explores some of these innovations including what is currently under development and what is on the horizon. New housing types and living arrangements that move beyond the group home and residential placement are emerging spurred in part by an expanding self-advocacy movement that champions housing choice and self-determination. Increasingly, adults with autism are working with designers, planners, and housing and service providers to envision new living environments. Similar collaborations are beginning to take place in creating effective new smart technologies that enable autistic adults to live more independently. With innovations occurring almost daily, the opportunities for new technology to transform how individuals with autism live is substantial as long as it is used appropriately.
The policy of deinstitutionalization – replacing complete institutions of long-term care with residences and services in the community – was first articulated in the late 1960s and early 1970s, but it took decades to see noticeable, widescale changes on the landscape (Campaign for the Mentally Handicapped, 1972; Kugel and Wolfensberger, 1969; Mansell, 2006). In North America, Europe, Australia and New Zealand, this transition from large residential institutions to networks of community-based living with support services is steadily progressing. Sweden and Norway are the leaders in this transition, where all institutional provision has been replaced and where the law now provides the right to community services (Mansell, 2006).
Nonetheless, many critics believe that the progress is much too slow, and that initiatives for creating and supporting residences that meet the growing numbers and needs of adults on the spectrum – as well as others whose health and capabilities are not being met by current housing market or government practices and policies – are too few. Our efforts in this book have been to provide guidance – grounded in available research and experts’ reflective practice to date – of design features and spatial characteristics that can advance a generation of homes and residential developments that resonate with the aspirations of those on the spectrum.
Attention to adults with autism is relatively fledgling within research arenas as well as service programs, including housing provision. For parents and for those aging out of the school system, the time for laser-focused attention on issues affecting the (p.172) lifespan – not just the childhood and adolescence of autism – is now, not for some distant future. And it is finally happening – likely too glacial a movement for many who are desperate for immediate solutions – but with a vigor and commitment that has not been witnessed before.
What we have profiled in the previous chapters was gleaned from current practices, thinking and research. But there are applications and approaches on the horizon that we believe will further guide the next generation of environmental design and development for those on the spectrum – not only in terms of what is built or renovated, but also in terms of how residential spaces are used and how individuals can advocate for what works best for them. We have divided these into three categories: housing types; smart technologies for independent living; and self-advocacy approaches for housing choice.
New visions of housing types and models
The early attempts to replace institutional living for those with disabilities initially resulted in relatively large residential homes, such as the intermediate care program in the U.S., the Wessex experiment in England, and the residential home program in Sweden. These larger-scale homes of 12 to 20 residents were still characterized by much institutional living and care. They gradually became less popular with families, residents and even policymakers, and new efforts arose to target smaller, residential-scale housing. Group homes then gained increasing prominence in the 1980s, where anywhere from four to eight people live together with extensive and pervasive – often 24/7 – paid assistance from trained support staff, who may or may not live in the same residence. While the group home model does not refer to a particular housing style per se, many are single-family homes or converted estate homes given that three or four bedrooms are sometimes necessary to accommodate the number of roommates with dedicated space for staff. They are typically located in residential neighborhoods and designed to serve individuals with autism, intellectual disabilities and other chronic health conditions. Staff typically assist residents both in the residence and when they leave home to use community-based settings (Clement and Bigby, 2010). Aside from family co-residence, group homes are becoming the dominant model of deinstitutionalized residence for those with developmental disabilities in North America, Europe, Australia and New Zealand (Mansell, 2006).
Innovations beyond the group home are appearing in numerous cities and communities in recent years, however, and we expect them to flourish in the next decade. A useful overview of both conventional and emerging types of housing is one developed by The Bureau of Autism Services of the State of Pennsylvania (Myers and Associates, 2010). Table 5.1 outlines their classification of seven different housing settings or arrangements, with numerous models or versions of each type (see Table 5.1). The names of these arrangements may vary across countries and regions. Each (p.173) housing arrangement can vary by characteristics of the structure, size, number of people in the household, and location.
Table 5.1 Seven housing settings and affiliated models
Bureau of Autism Services, State of Pennsylvania, 2010
In this section, we profile a number of housing models we expect to see increasing in our communities in the near future.
(p.174) Increasing criticism of group homes, or group shared residences, is based on ideological grounds and on recent research demonstrating that even smaller housing arrangements are associated with better resident outcomes (Lakin and Stancliffe, 2007). Critics point out that in many group home settings, residents usually have very limited choice of with whom they live, where they live, and even how they spend their time at home or outside. These concerns have fostered in part the “supported living model” in which an individual rents or purchases a residence, lives alone or with roommates or companions they choose (and typically a small number such as one or two others), and receives needed support and assistance from service and health providers on their own terms (Mansell, 2006). These supported living models are increasing in numbers, resident favor, and in policy directives in communities in North America, Europe and Australia.
Critics also warn, however, that not everyone can live in supported living arrangements, which often demand significant and fairly independent living skills and experience. They may be models that many persons with autism strive towards; but because of one’s current capabilities as well as financial resources, these housing models may not be appropriate at a present moment. So in all likelihood, group shared residences will continue to remain in our residential landscapes – but in new forms.
One version of the group home model, at a smaller scale and emulating more of family-living than service-living model, draws from the decades-old practice of Community Living Option’s (CLO) Family Teaching Model (Kirigin, 2001; Strouse et al, 2013). In these cases, a duplex is created or used whereby a family teaching couple (with or without children) live in one unit. They provide most of the support for three or four housemates with disabilities who live in the other unit. This has been a successful model operating in Kansas since the 1970s, and has emerged in other states in recent years. The Center for Discovery (TCFD) is developing an example of this model in a rural area of New York State.
For several decades, TCFD in Harris, NY, has provided medical care, treatment and residential services for children and adults with disabilities and complex medical conditions. Where previously the Center worked with a small population of individuals with autism, now nearly 90 percent of new residents have autism (Dr. Terry Hamlin, July 2013, personal communication). The majority of autistic individuals come to TCFD as children and adolescents to participate in therapeutic services and attend the residential school program. Until recently, the long-term goal has been for these individuals to move back to their hometowns and families upon graduation. However, TFCD has realized that many of these young people have become embedded in the Center and the neighboring community and moving away no longer is a desirable option. Inspired by the success of the Family Teaching Model, TCFD sees the shared living model as a way to provide housing and independent living support to adults with ASC and to create meaningful employment and housing opportunities for TCFD staff and spouses who relocate to upstate New York.
Much of the work and practice at TCFD involves expanding healthy living and eating among participants, residents and employees. A large, multi-site organic farm (p.175) provides much of the Center’s food and all recent new construction follows U.S. Green Building Council LEED (Leadership in Energy and Environmental Design) standards. Following this approach, the TCFD Duplex Model prototype builds on CLO’s Family Teaching model by integrating sustainable design practices into housing tailored to meet the needs of autistic adults. By implementing autism specific and sustainable design elements, the goal is not only to create a supportive, healthy environment for residents but also to study whether these design features lead to lower long-term care and support costs. The Family Teaching service model already has been shown to reduce service provision costs through a significant decrease in staff turnover (Strouse et al, 2003); determining to what extent physical design reduces resident stress, conflict and/or injury thereby reducing costs for monitoring and/or medical treatment has yet to be definitively determined (Michael Singer Studio, 2014).
Working with architects from Michael Singer Studio and a team of autism specialists (including the authors), TCFD developed a duplex prototype to be constructed within a new neighborhood located adjacent to the main street of the small town of Hurleyville. The selected site is in a new housing development and within walking distance of shops and, possibly, jobs, offering residents opportunities to participate in activities outside TCFD. Over time additional duplexes may be added to create a village-like setting.
The two-story Duplex Model provides housing for autistic adults on the first floor and for a teaching family on the second with both spaces connected through an interior door (Figure 5.1). The first floor design addresses the complex needs of future residents through a series of carefully considered factors: the need to mitigate sensory issues, the need to create a gradient of privacy and social interaction, and the need to enhance wellness, safety and quality of life. The floor plan unfolds along a south-facing solarium that serves as the home’s primary circulation space. The solarium not only allows ample natural light to permeate into the living spaces, it provides passive solar heating in the winter and a year-round interior garden space. The public (living room and kitchen) and private spaces (bedrooms) are accessed from the solarium; a series of thresholds in the form of seating nooks and informal seating areas intervene between each space creating buffers as well as layers for potential engagement. To lower resident anxiety stemming from unwanted encounters, each of the public rooms include at least two options for entering and exiting. Complementing this, each space, including bedrooms, has a glazed wall that allows for previewing.
Flexibility is built into the design of the first floor unit. An activity room employs a “second skin” system creating a storage cavity to house foldout elements such as tables and individual seating as well as items for physical or creative activities. In the kitchen, moveable islands may be configured to temporarily change circulation or to create individual workstations. The bedroom wing features four one-bedroom suites, each with a sitting area and an en-suite bathroom. In some situations, two of the bedroom suites may be combined to create a one-bedroom apartment within the larger unit. This apartment could be used by a cohabitating couple or as a transitional apartment (p.176)
Beyond layout considerations, the architects incorporated a wide array of sensory mitigation features, state-of-the-art technology and durable, environmentally sensitive materials into the design. Walls, ceilings and floors are acoustically insulated with select key walls, such as those in bedrooms and the laundry area, designed to be 12 inches (30 cm) thick to accommodate additional sound proofing. Where possible, storage is built into wall cavities, providing an acoustic buffer as well as reducing clutter. To minimize odors and improve indoor air quality, windows are operable, an integrated HEPA air filtration system is used, and durable, non-toxic materials and finishes are specified throughout. There is also the option to install a green roof to increase acoustic and thermal insulation.
In many cases, housing or service providers, as well as families and individuals, acquire individual homes – often apartment units but also condominiums, townhouses, or single-family homes — in existing communities. The housing or service provider typically owns the unit (for condominiums or single family homes) or has an extended, multi-year lease (in case of rental units in an apartment complex), and then rents or leases the home to adults with developmental disabilities or autism, either a single individual or two to three roommates who choose to live together (whereas in the group home model roommates are typically paired by the agency, not the individuals).
(p.177) One example is ESPA in the U.K. whose extensive portfolio in Sunderland, Durham and North Tyneside includes not only group homes but also cases of supportive living arrangements for adults with autism (ESPA, n.d.). Beechwood, for example, is a renovated single detached residence that was converted into four large apartments. Each unit has assistive technology for supporting more independent living activities as well as for security. In addition, Beechwood has a common space within the building where residents can get together if desired, a space intended to encourage residents to spend time out of their flats, socialize and minimize social isolation.
Another example but one of new construction is Orchard Commons in the borough of Allendale, New Jersey (Bergen County’s United Way, n.d.). Newly constructed within walking distance of a vibrant downtown district, this single-story apartment complex houses four two-bedroom units (approximately 900 square feet each) and two one-bedroom units (approximately 550 square feet each). All residents are low-income individuals with developmental disabilities, some who work in the area, and each resident selects his or her own support providers to assist them to live independently in the community. Like Beechwood, there is a community room at the front of the complex that residents can use for get-togethers – or simply to get away from their home and roommate when desired. The scale, materials and architecture of the complex fits into the surrounding older established neighborhood. The curving site plan on the lot minimizes the scale of the project when driving by. The property lot itself was strategically selected to be in close proximity to the business district with small shops and services, public transportation, recreation and employment in some of the local businesses. Orchard Commons is also across the street from the police station, ambulance corps and two houses of worship.
The development was spearheaded by Allendale Housing, Inc., in partnership with Bergen County’s United Way, the Madeline Corporation and the New Jersey Community Development Corporation. Multiple funding sources, including state trust fund accounts dedicated to housing for people with special needs, were necessary to keep the rents affordable to residents, many of whom are employed at least part time in low-wage positions.
While Orchard Commons and Beechwood are apartment complexes exclusively for residents with autism or developmental disabilities, there are also examples of apartment complexes being developed that have only a small number of units as designated set-asides for adults with developmental disabilities including autism. As in Orchard Commons, Beechwood and other supportive living models, each resident chooses support providers who provide assistance with health conditions and living in the community.
Willakenzie Crossing in Eugene, Oregon, is a recent model of this type which includes a total 56 units of affordable housing, all dedicated to those whose income is between 30 and 51 percent of the area median income (which is $59,255 as of 2015). (p.178) Within this complex, 16 units of studios and one-bedroom apartments are designated for occupancy of adults with developmental disabilities. Developed by a non-profit housing developer, Cornerstone Community Housing, the development is next to a public park, within two blocks of a shopping center that includes a bank, a couple of grocers and other shops, and within a block of a major bus route. Within the complex is a shared community garden, a playground and a community center (Figure 5.2). The residential services for everyone at Willakenzie — distribution of excess food from food banks, nutrition workshops, continuing education classes – reside in the community center. The center also services the larger community as it brings in neighbors for a summer lunch program for neighborhood children who qualify for free or reduced-price meals during the school year. A LEED-certified structure, the two-story building reflects the forested surroundings of the city of Eugene with tall windows, wood siding and high-pitched roofs. Willakenzie Crossing strives towards many of the quality of life goals emphasized in this book: access and support in surrounding neighborhood, dignity, familiarity and clarity, and affordability in particular. Its affordability lies with government assistance from a combination of federal programs (such as Community Development Block Grants funds, HOME funds, low-income housing tax credits) as well as state and local programs, such as Oregon’s affordable housing tax credit and property tax waivers for 20 years (Cornerstone Community Housing, n.d.).
According to the operations director of Willakenzie Crossing, the success of this community – and perhaps the key in reproducing a similar effort – lies in its partnership with SAIL Housing (Cady, 2014). SAIL housing helps to provide additional services and connections to personal support agents for the best interest of the resident. An on-
An innovative example of set-asides is 29 Palms in Phoenix, Arizona, an affordable housing property with 15 units of housing for seniors and six units for adults with autism. Utilizing a mix of public and private funds, 29 Palms was developed by the Foundation for Senior Living (FSL) in collaboration with First Place and the Southwest Autism Research and Resource Center (SARRC). The development brings together 22 seniors who have received training to understand the potential needs of their autistic neighbors who are 12 adults transitioning to more independent living. As part of the larger First Place Academy (profiled later in this chapter), 29 Palms is home to adults participating in their second year at the academy, preparing them for their eventual move into apartments within the larger Phoenix community. SARRC, a long-time leader in autism research and education, will provide on-going independent living skills training and support to the 12 residents.
The apartment complex, chosen for its proximity to shopping and public transportation, was completely renovated by Dohrmann Architects to meet the needs of the new tenants. The one-and-a-half acre development features four single-story buildings grouped around a large landscaped courtyard. A community center that includes laundry facilities, a computer room, a full-service kitchen, offices, bathrooms and a large covered outdoor patio, anchors the south side of the site. Each apartment has
Cognizant of the many sensory issues common to people with autism, the architects specified products that promote a peaceful living environment ranging from ductless HVAC systems, quiet ventilation fans and kitchen appliances to acoustic windows and doors. To further reduce noise, discrete sound absorption panels were installed in the bedrooms and the living room. Formaldehyde-free cabinets and doors, low VOC paints and adequate ventilation and air circulation promote good indoor air quality and work to reduce health problems associated with chemical sensitivities. Materials also were chosen for their durability: solid surface countertops in the kitchen, bathroom, and on top of storage units and bedroom desks resist chipping and scratching; safety glass for windows; and solid core doors. For ease of use, the entry lock opens either with a key or a key fob.
For the Foundation for Senior Living and First Place, 29 Palms is a pilot project. Working with SARRC researchers, FSL and First Place are developing an assessment strategy that will allow them to evaluate the effectiveness of the residential program and use that information to guide future housing developments. Residents began moving into 29 Palms in Fall 2014.
The supported living model typified in the variations above (29 Palms, Willakenzie Crossing, Orchard Commons, Beechwood) is not an exclusive residential solution for everyone with autism. Some critics and researchers question its affordability, appropriateness and even proclivity towards social isolation for many individuals on the spectrum. Since it requires a certain level of independent living skills, motivation and affinity for getting out in the community, it may be a housing model that some individuals gradually work towards but is not necessarily appropriate for one’s first residence after leaving the parental home.
Straddling the gap between supported living models and group homes are an increasing number of residences that provide accommodation for a relatively small number of housemates (between four and six in a single residence), but are organized and structured to provide choice and meaningful personal living spaces within support networks of the resident’s choosing, in their homes and communities. One example is Sweetwater Spectrum in Sonoma, California.
(p.181) In 2009, a group of families with autistic children, autism professionals, and community leaders founded the nonprofit organization Sweetwater Spectrum with the intent to create a high-quality residential community for adults with autism (Sweetwater Spectrum, n.d.). The architects, Leddy Maytum Stacy of San Francisco, drew upon the design goals and guidelines produced in the report Advancing Full Spectrum Housing (Ahrentzen and Steele, 2009), a precursor to this book. They also incorporated a number of sustainable design elements for water conservation, energy efficiency and indoor environmental quality such that the development qualified for LEED Gold certification.
The Sweetwater Spectrum organization acquired a 2.8 acre, vacant midblock parcel in the town of Sonoma, several blocks away from the historic town square, but immediately close to public transit, bicycle trails, a movie theatre and three grocery stores. The fenced site includes four 3,260-square foot residential buildings; each building with four separate en-suites for the four residents living there, and shared living room and kitchen. There is also a separate room near the front entry that support providers can use while visiting residents. These residences were intentionally designed to mitigate sensory overload through simple furnishings and a palette of natural colors with minimal patterning; uncluttered sight lines; soundproof walls between living areas; separation of high-stimulus areas; wood acoustical ceiling panels; wide hallways for easy access and movement; lighting on timers, not motion detectors; and quiet, individually controlled radiant heating and cooling systems. The architects also situated hallways and windows so that residents had the opportunity to preview activities and people in rooms and outdoor spaces before entering. A number of places of retreat for quiet and calm – both inside and outside – are also provided (Figure 5.4). Safety features were also key, including window stops, unobtrusive sensors on doors and windows, talking smoke/carbon monoxide detectors, and induction stovetops. In addition to ensuring accessibility through a variety of universal design strategies, the architects deliberately selected building materials and systems to promote healthy
The four residential buildings surround the community spaces that are in the center of the property (Figure 5.5). A community building includes a fitness room, a fully equipped professional teaching kitchen, a library alcove, and a community room intended for groups to watch movies or engage in other group activities. Across from the community building is a 20x48 foot therapy pool; and at the end of the property is a 1.25 acre urban farm with fruit orchards, crops and a greenhouse.
Sweetwater Spectrum opened in Fall 2013. With an interest not only in the effectiveness of this complex in enriching residents’ lives but also with an eye towards building other residential developments for adults with autism in the future, the Sweetwater Spectrum organization has engaged local university faculty and students to conduct pre- and post-occupancy evaluations. Results from these evaluations will help target which design features and social/education programs are most efficacious and popular, which ones are not, and for whom. Such insight will help guide future developments in selecting and prioritizing design and programmatic features, particularly when capital funds may not be as available as those of this US$10.5 million development.
On the other side of the U.S., in Ramsey, New Jersey, is Airmount Woods (Figure 5.6). It, too, reflects the middle ground between traditional group home and supportive (p.183)
Airmount Woods provides nine small one-bedroom units in two identical two-story buildings that are connected by an outdoor patio. Adults with autism occupy eight of the units, and one unit is designated for supervising staff. Each resident has his/her own unit with a bedroom, bathroom, and efficiency kitchen, and shares the common living and dining areas and full kitchen (Figure 5.7).
Supportive services are provided by New Horizons in Autism, a not-for-profit organization in New Jersey. The entire project was spearheaded by Bergen County’s United Way who in the last few years has developed an extensive and growing portfolio of newly constructed and renovated housing for adults with developmental disabilities, sensitive to many of the design goals and issues profiled in this book.
An “intentional community” is a planned residential community intended to have a high degree of social cohesion and teamwork. While some intentional communities hold a common social, political, religious, or spiritual vision, that shared vision can also be nothing more than a strong mutual proclivity to promote community feeling and support, and realized by shared responsibilities and resources. Many farmstead and homestead communities in the U.S. developed for people with autism (Agricultural Communities for Adults with Autism, n.d.), and the village communities in the U.K. mentioned in Chapter Three are examples of intentional communities. Since many of these farmsteads and village communities are situated on large acreage in rural communities, they are relatively isolated from neighbors and often lack the sense of being a community within a larger community. Recently intentional communities exclusively occupied by adults with developmental disabilities are appearing in nonurban settings as gated subdivisions, such as The Arc Village in Jacksonville, Florida. Located near a commercial corridor but enclosed by a formal fence and entry gate, this 97-unit community will consist of one- and two-bedroom rental units, in two-and three-unit villas. Each village has a variety of accessible floor plans and elevations. The residential villas ring a community center. Ground breaking for The Arc Village occurred in Spring 2015 (The Arc Jacksonville, n.d.).
Critics often portray the remote location or gated insular nature of these intentional communities as a retreat from the community living tenets fostered by the disabilities rights movement. An exception is cohousing. Many people believe – and regret — that the notion of “community” has been lost in the modern era (for example, Putnam, 1993). While communities may have grown organically in the past, fostering an engaged sense of community today seems to require a more deliberate, intentional effort among dedicated individuals and households who are so inclined toward more interdependent or interconnected living with those in their immediate neighborhood. (p.185) These inclinations – coupled with a strong desire to live in a supportive, sharing neighborhood while still maintaining one’s household privacy and identity – lie at the heart of the cohousing model.
This movement began in Denmark and Netherlands in the 1960s to1970s, gradually emerged in other European countries afterwards, and transmigrated to North America in the early 1990s. Cohousing allows for people to maintain a sense of private ownership but within a residential development whose neighborhood design and organization encourages people to interact in shared common spaces, such as gardens and kitchens, and avoids those design practices that isolate owners (such as a private garage with an interior door connected to the home, allowing a resident to drive to and from home without ever stepping outside the residence). Cohousing neighbors may share meals together in the common house; delegate or rotate daily living tasks, such as babysitting or grocery shopping, among residents; and establish a cohousing governance structure that encourages participation from most if not all members of the cohousing effort. Cohousing’s core principles are: a participatory process, neighborhood design, common facilities, resident management, non-hierarchical structure and decision-making, and no shared economy (McCamant and Durett, 1988).
Private, individually owned or rented homes are generally downsized to allocate more space to shared community spaces, such as gardens, workshops, communal kitchen and dining room, guest rooms and playgrounds. Residences are typically clustered, leaving undeveloped land for environmental preservation or community recreation. Each person participates in the design and management of the cohousing community, with a vote in how the community is structured and coordinated. Residents do not pool their finances. Role-sharing of childcare, grocery-shopping, home maintenance, and the like, recognizes that one person cannot do everything well.
The foundation of cohousing is therefore in its embrace of interdependence, which soundly resonates with the spirit of disability rights. “Rather than seeing only people with disabilities as needing ‘special’ help, communities that acknowledge interdependence de-stigmatize the expectation of assistance for and from every community member” as noted by legal scholar Carrie Griffin Basas (2010, 693).
A few thousand people in North America live in nearly 120 cohousing developments, with the size ranging between 15 and 35 households (cohousing.org). The cohousing movement is more pervasive in Europe: more than one percent of the Danish population live in cohousing (Lietaert, 2009).
There are a few examples of cohousing communities in the U.S. where at least one of the units is occupied by persons with developmental disabilities. While typical units in a cohousing development are owned by individuals and families, the one unit dedicated to residents with disabilities in Jackson Place Cohousing in Seattle is owned by a community organization – Parkview Services – who rents the three-bedroom unit to three men with disabilities, each with his own lease with Parkview. Two residents have federal housing vouchers that augment their private funds to afford rent (Jackson Place Cohousing, n.d.). CoHo Ecovillage in Corvallis, Oregon, is a cohousing community (p.186) of 34 homes with a large common house. A mixed-income community, eight homes are set aside for low or moderate home buyers including one four-bedroom unit for residents with developmental disabilities (CoHo Ecovillage, n.d.).
Across the hall from this unit is a two-bedroom flat occupied by support providers of these residents, a family who has lived and worked in that role for the past 12 years.
According to one of the cohousing residents who is also mother of one of the men living in the supported residence, the cohousing community is supportive of (p.187) this residential option (Anonymous, 2014). She and her husband have lived in the cohousing community from its initial opening in 1998, and they felt that their son Matt (pseudonym) would be more independent living in a unit in cohousing located in Cambridge — with its dense network of transit, services, employment opportunities, and activities — than a group home located in a more suburban community. Cambridge is a very active, relatively dense community adjacent to the city of Boston, with a wide assortment of health, medical and care services. The public transit stop is a seven-minute walk away, and Matt uses transit to go to both of his jobs, medical appointments, and other places where he meets friends.
Cambridge Cohousing operates like most other cohousing communities: decisions are made by consensus, there is a high degree of self-sufficiency, turnover is minimal and residents tend to stay, even age in place. Many of the regular community tasks — taking out the trash to the curb, preparing common meals, tending to gardens and landscapes — are done on a rotational basis among all members of the cohousing development. As members, Matt and his roommates participate in those community activities which they are able to perform.
At Cambridge Cohousing, common meals are not stipulated. There are three common meals: a takeout pizza and potluck combination on Mondays, a home-cooked meal on a mid-week evening, and another home-cooked meal over the weekend. Throughout the community, some residents attend almost every meal and
Thus, Cambridge Cohousing provides opportunities for different levels and scales of socializing. Matt and others engage with cohousing neighbors for the occasional social event or community meal in the development’s common house located in a prominent central location of the development (Figure 5.9). With members cooperatively involved in maintaining the common house and grounds, Cambridge Cohousing also affords opportunities to connect with neighbors in a mutually functional manner. Its proximity to an extensive public transit network in the activity-rich Boston metropolitan area allows Matt and his friends outside the cohousing community to meet and go to movies, sporting events or simply hang out together. In writing about her proclivity toward “hermit-like behavior” but still with longings for a friendly crowd around – but one slightly removed – blogger Margaret Massey (2012), an associate member of a cohousing residence profiles cohousing as “all about options, preserving the individual with separately owned units, while nurturing community with common spaces and shared decision making, optional group meals, and cooperative events.”
While few adults with autism live in cohousing, it is a housing model in which people can perform some of the tasks at which they excel (for example, cleaning, gardening) and trade off the tasks which they may not be able to do (for example, driving, home repair) because of physical, cognitive/neurological, or economic capabilities (Basas, 2010). Urban cohousing’s emphasis on equal, participatory citizenship within the community, the layering of community within a larger resource-rich community, and the intentional construction of shared living spaces and shared lives, along with independent and interdependent living, may, as Basas (2010, 680) suggests, “hold the greatest potential for realizing the vision of Olmstead and its plaintiffs.”
Finally, an emerging model in the United States encompasses integrated-continuum settings offering post-secondary educational opportunities and vocational training to young adults who, at 22 years old, are out of the secondary school system. While there are a growing number of programs for people with intellectual disabilities (Think College, n.d.), those developed specifically for people with autism are relatively few.
First Place in Phoenix, Arizona, is an example of this model aimed at adults with autism. Slated for groundbreaking in 2015, First Place integrates three programs in one setting: 50 units of supportive housing, a Transitional Academy, and a Leadership Institute. As a mixed-use development located in downtown Phoenix one block from the light rail line, First Place offers residents and Transitional Academy students easy access to neighborhood amenities and services. Aimed at adults moving out of the (p.189) family home for the first time, the First Place Apartments consist of fifty units of one- and two-bedroom apartments for residents who may choose to live on their own or with a roommate or with an aide or support provider. First Place provides a wide range of services and amenities tailored to meet the individual interests and needs of residents. Services and amenities available to choose from include peer mentoring; meal planning, shopping and preparation assistance; stress management and crisis intervention; technology assistance; money management; health related assistance; and recreational and social opportunities. Apartment residents will be supported by staff members who oversee the property and the various programs. Residents requiring additional supports not offered on site may elect to hire outside service providers (Denise Resnik, personal communication)
The First Place Transition Academy is a two-year independent living program operated by the Southwest Autism Research and Resource Center (SARRC). Closely modeled after a California program – the Taft Community College Transition to Independent Living Program – the First Place program provides vocational and life skills training to 16 students annually. First-year students live on-site in one of the four, four-bedroom-bedroom apartments where each student has his or her own room and en-suite bathroom. In year two, students move to transitional off-campus housing, sharing a two-bedroom apartment with a roommate.
The third piece of First Place is the Leadership Institute. With a focus on research and training, the Institute will bring together autism experts to educate support providers, advance public policy and create national housing and service provision standards including training and continuing education requirements for providers. A primary goal is to substantially increase the number of well-trained support providers as well as re-make the field into a valued career choice.
Funding for First Place comes from a mix of private, public and non-profit sources.
Smart technologies for independent living
Technology increasingly is viewed as a resource for supporting people to live longer and more independently in their homes. Devices and programs that assist individuals complete activities of daily living, enhance safety and promote health all are seen as valuable tools for increasing and maintaining this autonomy. Fueled by the rapidly growing number of older people and in particular those with dementia, much of the current research and prototype development focuses on solutions for this population. Responding to both the desire expressed by older adults to remain in their homes as well as the cost effectiveness of doing so, researchers are creating a range of assisted living technologies that may make this possible. At a lesser rate, there are various new technologies under development that focus expressly on assisting individuals with intellectual or cognitive disabilities including autism. However, since both groups experience some of the same challenges when living independently, there exists (p.190) considerable opportunity to implement technologies designed for older people in homes for people with autism. This section is intended to provide a brief overview of the future of smart home technologies as well as a selection of some of the specific products and systems now being tested.
Today, creating a smart home typically involves installing a variety of networked devices and appliances that automate various environmental features and can be controlled by residents either on-site or remotely. These smart devices and appliances often include lighting and audio systems, thermostats, door lock and security systems, as well as refrigerators, beds and even toilets. At this stage of design evolution, most of these objects act passively, requiring routine user interaction to adjust automation schedules or to input information for the device to work “smartly.” The next iteration of these technologies seeks to facilitate a more seamless and unobtrusive relationship between the user and technology through the creation of Ambient Intelligent environments. According to Augusto and colleagues (2013), for an environment to be intelligent, it must be able to function in several critical domains: it must be able to recognize individual users and learn from them; it must be able to understand the context of an event; it must be able to function autonomously; and it must be able to reason such that it is able to determine when to assist a user and when not to.
The success of an intelligent environment stems from its ability to adapt its behavior to the user (Aztiria et al, 2012). To do this, an intelligent environment needs to be context-aware such that it “learns” by unobtrusively collecting data on the user and the environmental aspects through a network of embedded devices such as wireless sensor networks, distributed computing and RFID (radio-frequency identification) installed throughout the house without requiring input from the user. It then uses that information to adapt to the present situation and provide an appropriate level of support. The resulting system assists the resident rather than replaces him or her: it knows when to offer a prompt (food in the refrigerator is expired or possible meals based on refrigerator content) and when not to (when someone is on the phone) (Olivier et al, 2009; Hayes et al, 2009; Augusto et al, 2013). As Wobbrock and colleagues (2011) point out in their discussion of ability-based design, the success of any assistive technology hinges on understanding what an individual can do and creating a system that is person-centric rather than system-oriented such that it is able to adapt to users without requiring people to alter their behavior, bodies or acquire special knowledge to use it.
The intelligent environment scenario describes the most comprehensive model of this evolving technology. Components of intelligent environments including smart materials, interactive smart spaces, ambient assisted living environments, artificial intelligence, pervasive and ubiquitous computing, and smart environments. Along with a growing number of mobile applications, these are all aspects of the broadening array of computing applications designed to enhance occupants’ experiences of particular environments and assist with activities of daily living. Falling within this array of technologies are several systems and programs in testing or prototyping phase that either are targeted toward or applicable for autistic individuals.
(p.191) Given the challenges and potential dangers associated with cooking, it is unsurprising that many systems focus on assisting people in the kitchen. Smart Kitchen is a smart environment utilizing ambient assisted living technologies to support elderly people and people with disabilities with kitchen activities. The system merges various technologies including RFID, wireless sensor networks, distributed computing and artificial intelligence to create a context-aware environment managed by an “e-Servant.” As a learning system gathering information from the appliances, sensors and interfaces, the e-Servant is able to “detect and compensate the behavior, habit changes and loss of abilities of the user” (Blasco et al, 2014, 1635) as well as provide information regarding the functioning of the appliances. If changes are observed in a user’s abilities, e-Servant reports that data to support providers and/or relatives so that the user’s profile can be updated. Blasco and colleagues (2014) note that the purpose of the e-Servant is to supervise and assist the user not to take over daily living tasks. To date, 63 end-users and 31 support providers at two labs in the UK and Spain have positively evaluated the Smart Kitchen; additional studies are planned.
The Ambient Kitchen and Kitchen As-A-Pal also are whole kitchen systems designed to assist people to prepare meals. Developed at Newcastle University in 2009, the Ambient Kitchen integrates a variety of sensors and display technologies into a state-of-the-art kitchen to provide support to individuals with food planning, preparation and cooking (Olivier et al, 2009). Through the use of cameras, RFID tags and readers, pressure sensors, accelerometers and projected displays, the system assesses where the user is and what display he or she is viewing and adjusts the display content to reflect what is needed at that moment (Dong et al, 2009). Information displayed may include recipes or cooking instructions. Kitchen As-A-Pal, located at MIT-Huset, Umeå University, Sweden, also offers cooking and meal preparation support to people based on their individual needs. Using RFID technology embedded in surfaces and containers and a sonar network able to determine proximity relationships, this interactive kitchen recognizes individual users, ascertains the specific support level needed and provides the appropriate guidance (Surie, Baydam and Lindgren, 2013). Privacy concerns may arise with Kitchen As-A-Pal as it employs facial recognition technologies to identify users. Another promising technology is FoodBoard, a food identification system that uses optical fibers and a camera embedded in a custom chopping board to identify unpackaged foods (Pham et al, 2013). Where other systems use RFID technology to recognize packaged food or require microphones or cameras to record the environment, FoodBoard is capable of recognizing fresh, unpackaged foods with a high degree of accuracy and without raising privacy concerns. FoodBoard is envisioned as a building block of a total kitchen activity monitoring system.
In addition to intelligent environments, there are a variety of smart technologies and objects under development that focus on a particular task. Two technologies developed by the Ubiquitous Computing Group at the Georgia Institute of Technology are the Social Mirror and Hydrostream. Targeted specifically at adults with autism, the Social Mirror employs an individual’s online social network to promote and support independence (Hong et al, 2012). Through the mechanism of an interactive mirror, (p.192) individuals are able to consult with family members, support providers and friends for assistance with self-help activities such as dressing and grooming and other activities of daily living. As well as being located in the home, the Social Mirror is designed to be accessible via smart phones and tablets, allowing users to access it throughout the day. Hydrostream is a monitoring system using infrastructure-mediated sensing to record water usage related to various activities of daily living (Thomaz et al, 2012). By assessing water usage associated with activities such as brushing teeth, cooking or washing dishes, it would be possible to understand if an individual is maintaining good hygiene or eating well without the need for numerous environmental sensors and the associated privacy concerns.
The Intelligent Assistive Technology Systems Lab (IATSL) at the Toronto Rehabilitation Institute is developing a prompting system using robots to help people complete daily living tasks around the home. COACH (Cognitive Orthosis for Assisting aCtivities in the Home) is an intelligent environment that uses artificial intelligence and a video camera to assess how an individual is completing a particular task, offering prompts when needed (Mihailidis et al, 2008; Czarnuch and Mihailidis, 2011). Designed to assist older people with dementia and children with autism with hand washing, COACH observes and prompts individuals to complete the various repetitive steps of the activity, relieving family members or support providers of the need to routinely intrude. The COACH system features a small robot located on the sink that models hand washing gestures along with verbal coaching (Young, 2014). IATSL also is developing a tele-operated robot capable of socially interacting with people with dementia while assisting them with daily tasks (Begum et al, 2013). Standing upright with a monitor for a face, the robot is equipped with two cameras, two speakers and a microphone and is able to move through the house. When speaking with residents the monitor’s screen displays an animated face. If a resident needs support, the display converts to visual images that correspond with the verbal prompts. Currently the robot, nicknamed ‘Ed’ only has assisted users with making a cup of tea.
Designed both to assist older people at home and to provide a social connection to family and friends, the GiraffPlus system consists of a network of environmental and physiological sensors and a movable robot (Coradeschi et al, 2013). The system not only monitors an individual’s activities to assess any changes in abilities and to determine if any support is needed, it also provides social interaction through the robot itself. The monitor ‘head’ of the robot facilitates communication with family members, friends, support providers and others through a “Skype-like” interface, giving a sense of actual presence. Developed by a consortium of European universities, organizations and businesses (GiraffPlus, n.d.), the GiraffPlus system uses affordable, commercially available components and currently is being evaluated in homes in Sweden, Italy and Spain. Although not designed specifically for individuals with autism, GiraffPlus may be appropriate for some autistic people, especially those who experience seizures or epilepsy or other specific health issues.
While there are many exciting possibilities suggested by intelligent environments and other smart technologies, there also are several challenges including ethical issues (p.193) pertaining to privacy and questions regarding how to utilize the potentially vast quantities of collected data (Berry, Beyer and Holm, 2009). Significantly, as these technologies assist residents with activities of daily living, many also collect data on individual users documenting different aspects of, users’ abilities and actions. The data may be used for a range of purposes; however, most developers intend it to be used to adjust the different systems to better meet users’ needs as their abilities evolve. As these new technologies reach the market and become commercially available to consumers, residents, in discussion with their support providers, medical providers and family members, will need to determine what level of personal oversight and intrusion on their privacy they are comfortable with. This is especially important when considering whether or not to install activity and health monitoring systems that rely on a combination of sensors, microphones and video cameras; where possible, residents should have control over the data collected on them including how it will be stored, accessed and used (Augusto et al, 2011).
New directions in self-advocacy for housing choice
The underlying current running through the pages of this book is that of informed and viable choice. We have structured our book not as a directive but as a friendly guide that one can take on a journey to a new place – a new residence, perhaps – to gauge the terrain of possible routes and destinations depending upon the inclination, interest, and companions on that journey. The essence and beauty of informed choice is not the chosen product per se, but the process. This concept of choice undergirds prevailing policies and philosophies of independent and community living, although it is often labeled under the terms of “person-center planning” or “self-determination” (there are hundreds of documents on these, but a few that represent both governmental and service provision perspectives include: O’Brien and O’Brien, 2000; Program Design, 2005; Vatland et al, 2011).
As described at the beginning of this book, choice is a multifaceted endeavor that goes beyond methods to assess statements of “preference.” While they can be somewhat informative, efforts such as surveys to gauge preferences – of an individual or of a community of individuals – are fraught with challenges and potential biases. This applies to all populations. National and multinational, high-profile survey research firms such as Pew, Gallop, Ipsos MORI and many others invest hundreds of thousands of dollars and employ sophisticated sampling and modeling techniques to gauge people’s preferences – and are known to get only part of the story right, or even, at times, entirely wrong.
Assessment methods that require verbal or written responses can be inappropriate for many persons with autism given communication mismatches between those assembling the assessment tool and those using it. Questionnaires – even those that (p.194) rely on checklists – assume an individual’s language skills can process the content and intent in the same manner as those writing and assembling those questionnaires.
It is also more than simply a matter of communication mismatches, however. Gauging preference is difficult when one is not familiar with many of the options, or concepts, posed. Cohousing, for example, is rarely mentioned as a preferred living arrangement – but then again, in many countries or regions few people have even heard of cohousing, let alone seen one in their neighborhood. Even if one was familiar with a particular housing type or arrangement, it can be difficult to make an informed judgment if one has never experienced living in that setting or arrangement. Informed choice then implies a process: being engaged, becoming informed of possibilities and what each of those may mean in one’s life, taking the initiative and movement towards realizing that choice – with or without assistance from others in one’s support circle.
Self-determination and self-advocacy tools that go beyond expressing preferences to engaging in such processes are increasingly being developed and used, and some of these are quite thorough (for example, Fisher et al, 2007). These “tools” are often administered or managed by supportive living coaches or other service providers; and as such, they strongly depend upon the coach’s knowledge and acceptance of a range of options, as well as recognition of what options could be chosen if in the future they became more available. In Virginia, for example, the state’s Department of Behavioral Health and Developmental Services plans to increase the availability of independent living options for individuals with intellectual and development disabilities. With advice and assistance of national housing experts of the Technical Assistance Collaborative in Boston, Department staff concluded that only face-to-face and person-centered planning processes could ascertain people’s preferences for housing or residential services. Virginia has thus begun collecting data on each individual’s choice and housing need gathered from case managers as they work with individuals in developing annual person-centered plans. Aggregated later, this data will be used to provide projections of types of housing desired and needed for future years, starting in 2015 (Fletcher, 2013).
While a commendable strategy that goes beyond ill-formed results from an online survey, for Virginia’s plan to be successful and truly representative, case managers will need to be well versed in the range of residential alternatives on the landscape – not only those currently existing, but also those on the horizon that may be better matches for the needs and aspirations of clients, both of today and in the near future.
A means to increase engagement in the decision-making process are participatory strategies. Such techniques are increasingly being advocated for in the autism community (Wright et al, 2014). For example, AASPIRE (Academic Autistic Spectrum Partnership in Research and Education) advocates community based participatory research (CBPR) or participatory action research (PAR). In these situations, professionals and community members work together as equal partners in the development, implementation, and dissemination of research that is relevant to the community (AASPIRE, n.d.). Some groups have used AASPIRE’s approach (p.195) for research and intervention proposals for healthcare, social support and violence victimization.
Given that the focus of this book is on residential living and housing choices, the community participatory design field has much to offer. The decades-long work of Henry Sanoff (1991; 2000), Randy Hester (2006), and others in this field have produced a number of visually-based participatory design strategies whereby communities and individuals explore, test, envision and decide on the shaping of the built environment — schools, parks, neighborhoods, housing — in their lives. This approach seems immensely applicable to those with autism. Indeed, designers and researchers of the Helen Hamlyn Centre for Design of the Royal College of Art in London have already made steady and exemplary progress in advancing participatory design efforts that can serve as a model for others to consider.
While the portfolio of projects of the Helen Hamlyn Centre for Design encompasses a range of settings and populations with social needs, for the last several years they have been involved in action research and participatory design projects with people with autism, focusing on housing design, sensory preferences, green spaces and household objects for everyday activities at home, such as vacuuming (Brand, 2010; Brand and Gaudion, 2012; Gaudion and McGinley, 2012; Gaudion, 2013; Gaudion, 2014).
They use a myriad of methods – participatory observation, co-design workshops, trialing and assessment, interviewing, visual profiling, visual questionnaires, digital tools, mapping, prototyping and piloting design concepts, to name a few (see Figure 5.10 for one example). There is much to learn from these leaders in the field.
Part of the success of the efforts of Gaudion, Brand, McGinley and others at the Helen Hamlyn Centre is the extended engagement of those with autism in the design
Increasing exposure to possibilities has been advanced by a number of selfadvocates in the disability rights movement. Take, for example, “Welcome HOME” in Newburg, Wisconsin. This development was the brainchild of Diane Miller who acquired adult-onset polio as a young adult. Facing how to remodel her home to better suit her condition, she was perplexed with the myriad different home and accessibility features profiled in catalogs, showrooms, and stores. Options were numerous, but seeing them alone did not allow her to judge which would work best for herself.
Miller recognized that others faced the same predicament: of being exposed – even overwhelmed at times – to numerous accessibility devices and housing features but not knowing from experience if and how those features would be suitable for her particular situation at home. In the 1990s, she developed and built a uniquely designed bed and breakfast, with different accessibility features and spatial arrangements in each bedroom, bathroom, and in the various eating and lounging areas. Guests can visit for a few days or a week, stay in different rooms, and try out different fixtures, lighting, flooring materials, furnishings, gadgets and the like, to see what might later work best for them in their own homes (Ahrentzen, 2002).
Since Welcome HOME was developed over 20 years ago, this can hardly be considered an innovation on the horizon. But its intent to create opportunities to experience living in different spaces to better inform one’s own housing choices is being explored in today’s computer environmental simulation and virtual reality technology. A number of software designers in the user-design field are developing and refining these technologies to advance participatory design efforts whereby persons can “experience” different environmental conditions and situations. One example is the commonSENSE platform being developed by Vardouli and colleagues (2012) that allow individuals to explore the potential of their own living space and actively engage them in its design and remodeling or rearrangement. While not targeting individuals with autism per se, its application and other computer-based participatory design techniques to the autism community is considerable.
Going beyond conventional software architectural design systems such as Sketch-Up, the CommonSENSE platform provides what the software developers/researchers call “environment intelligence” that allows user control, collaboration and participation; they describe it as a convergence of the digital and the physical. While the details of the monitors, technologies, software, and online design engine (p.197) are described elsewhere (Vardouli et al, 2012), the prototype comprises a sensor kit that allows users to collect space use and occupancy data by installing the kit in their apartments and communal spaces. From the collected space-use data, users can then later watch how they use the spaces where they live. Design alternatives or spatial scenarios can be simulated, and residents can use these as a basis to discuss, keep or alter these alternatives – and eventually test them in physical space. CommonSENSE and other interactive technologies that use actual and simulated scenarios may provide a new approach to design decision-making.
While these innovations in participatory decision-making and informed choice range from prop-based approaches to sophisticated computer simulation of actual and altered settings, most central is the emphasis on process-oriented goals, a mainstay of the neurodiversity and self-advocacy movement. These approaches are not trying to help people with autism “pass” or become somehow more “normal” or “typical” in their choice of settings. Rather they are intended to provide a greater range of approaches to developing skills for learning about and advocating for the type of residential setting in which each individual might choose to live. This empowers the individual, resulting in not only decreased dependency on support providers but also affording greater opportunity for life fulfillment through active participation in shaping and making the decisions affecting one’s life (Murray, 1996) – and a more suitable and desirable place to be at home with autism. (p.198)