Autism Resources Autism Reoriented Community Housing (ARCHway) is an community housing initiative by the Foundation for Autism Support and Training, a national non-profit offering advice and consultation on person-centered housing solutions for adults with autism. Members of ARCHways Consortium have 20-30 years experience and include pioneers of person-centered housing and assistive technology for people with autism and other related disabilities. For further information on this topic, go to www.myarchway.org and also join our social networking site at www.myarchway.ning.com to participate in free webinars on this topic soon.
ARCHway’s Executive Director, Karen Kaye-Beall offers Q&A.
1. What is meant by the term a “person-centered” approach to developing housing for people with autism?
As most people know, autism is a spectrum disorder. People with autism can be low, mid or even high functioning persons. In person centered planning, it is critically important to have a very thorough understanding of the many signs and symptoms each individual with autism experiences.
The main signs and symptoms of autism involve problems (to greater or lesser degrees of severity) in the following areas:
--Communication - both verbal (spoken) and non-verbal (unspoken, such as pointing, eye contact, and smiling)
--Social - such as sharing emotions, understanding how others think and feel, and holding a conversation. They have difficulty reading facial expressions or picking up social cues.
--Stereotyped behaviors - Routines or repetitive behaviors such as repeating words or actions, obsessively following routines or schedules, and playing in repetitive ways. Also unable to play or keep themselves occupied in a normal or typical fashion. Many experience sensory integrative dysfunction.
--Sensory Integrative Dysfunctions -Many people with autism also experience “sensory integrative dysfunction” which means that their sensory channels can be abnormal. They may become ultra sensitive to certain sounds, certain sights, certain textures, and certain physical sensations. So for some, it becomes important to control the environment so that these overwhelming sensory overload experiences are kept to a minimum.
Each and every individual with autism certainly does not experience each and every symptom, or with the same severity. Different people with autism can have very different presenting symptoms. Within each of the key diagnostic categories, i.e., communication, social, behavioral and sensory, one person may have mild symptoms while another may have serious symptoms that may cause them to need close support so they do not become a danger to themselves or others. But they both have an autism spectrum disorder.
A person-centered approach takes into consideration the differing support and environmental needs of each and every individual, to ensure that each person is kept safe, yet is allowed the maximum independence they are capable of handling while provided with experiences, activities and opportunities to continue to learn and grow and thrive.
2. When designing community living models and options for people with autism, it is important to consider whether the individual has support needs that are consistent with someone who is higher functioning, middle of the spectrum or lower functioning?
One size never fits all, but it is possible to create subcategories of support needs. For those that sound insulation is an important element, for example, housing with sound insulation will best meet the needs of these individuals in this subset. There are many such examples.
--On the higher end of the autism spectrum (many having a diagnosis of Asperger’s Syndrome, but not all), some having received ongoing support and training as a child and therefore, learned to function relatively independently in terms of activities of daily living and spend their time somewhat productively as an adult, but likely with restrictive interests or obsessive interests. Some or all of their symptoms may be considered mild. They may have varying degrees of communication and social skills, and demonstrate some self-stimulatory behaviors, but may still lack safety awareness and may show some obsessive compulsive behaviors. Consumers need their supports (to lesser degrees), to see and monitor their activities. They still may require some lists and visual prompts for daily living. These individual may certainly be able to live in apartments or townhouses with appropriate staff support living with them, depending on their individual needs. It may be fine to indentify housing as part of the already established housing fabric in our society. However, in some instances, adaptations may need to be added such as better sound insulation, alarm systems or the inclusion of certain assistive technology such as sensors and various non invasive monitoring devices.
--On the middle of the autism spectrum, usually meaning that they have some degree of severe communication problems, social problems, some self-stimulatory behavior, and “occasionally” demonstrates an aggressive action or “occasionally” does some action that may harm them. Many will show some obsessive-compulsive traits. They also may need some help in activities of daily living, but also self sufficient to some degree. Most lack safety awareness. These individuals may test the strength of materials in their physical environment. Consumers need their supports to see and monitor their activities to assure safety. They will likely still need prompts and visual supports for daily living. These individuals may likely need 24 hour care, but can handle a number of activities of daily living if reminded. People that test the strength of their environment need a number of adaptations in the environment, many of which may not be easily found in the readily available housing fabric. Adaptations may include the need for safety glass in windows; doors that do not slam; cabinets and walls made of materials that do not fall apart easily for harder daily wear and tear
--On the low end of the spectrum: It is fair to say that those with ASD that frequently (rather than only occasionally) display severe problem behaviors including aggression, self injurious or disruptive behavior are referred to as being on the low end of the autism spectrum, regardless of their ability to communicate, socialize or function reasonably independently. Some of these individuals may have been in facilities for many years, with little or nothing to do and some may have taken any number of combinations of prescribed drugs that rather than control these behaviors, may have increased some unacceptable and maladaptive behaviors. When considering the stereotype of someone with autism who never acknowledges those around them, sits constantly rocking in a chair all day, and is a person needing help with many or most of his hygiene needs, it is likely fair characterize that person as being on the low end of the spectrum. This individual lacks safety awareness. These individuals will test the strength of materials in their physical environment. These consumers need their supports to see and monitor their activities to assure safety. They will likely still need frequent verbal and visual prompts for daily living and likely much hand over hand prompting to accomplish most tasks.
3. Are you saying that people with autism can not live in typical housing?
No, I am not saying that. It is always preferable when people with autism can live in typical housing already available, but when taking a person-centered approach, it is mandatory that the physical environment matches the behavioral and support needs of each individual that lives there, or else, you may find a house that has constant holes in the walls, broken windows, broken curtain rods or such thin walls, that each individual who may be sensitive to sound may have behavioral melt downs unless some appropriate sound insulation is put into place. In some instances, these adaptations can be done as a simple renovation to preexisting housing. In other situations that are much more complex, it can be much more cost effective to just build new from scratch and not try to renovate a pre-existing environment.
4. In your experience, do group homes address these adaptations to the physical environment and use person centered approaches?
While using a person centered approach has become an ideal for many providers of residential services in the autism field, in most instances, it is not fully put into practice. An opening or available bed will become available in a group home, and that opening will be offered to an individual in need. If the new person with autism needs a higher staffing ratio, that modification may or may not be put in place, but rarely are modifications done to the actual physical environment to accommodate the needs of the new individual. It is usually after the fact that holes in the walls are repaired, or new doors placed back on their hinges and so forth that environmental modifications are done, and in many cases, not even then.
5. What alternatives do parents of adults with autism have besides accepting the next bed that opens up in a group home?
A parent can always try to work with a provider or vendor to ask them to make environmental adaptations to suit their loved one’s needs. If that fails, a parent has the option to develop their own housing for their loved one with autism and that might include a roommate situation, or it might be jointly owned by the group or the trusts of the group as “cooperative housing”. In this case, a small group would form together to create housing, and would seek the guidance and consultation of a group like ARCHway, whose consortium members and consultants have countless years of experience developing housing and adapting housing to meet the needs of people with autism on all parts of the spectrum. They are also experienced in recruiting, training and supervising support staff and can provide the group ongoing consultation until they are able to develop the staffing structure and the housing they need. They can also serve as intermediaries between a parent group and a residential provider or vendor who may wish to provide services to that particular co-op group.
6. How much does specialized housing cost?
Costs vary tremendously, depending on the costs of real estate around the country and depending on the square footage needed in each situation. Some individuals with autism may not be able to live with others, so may do best in a duplex model with caretakers living next door. Or some families may like to create a studio apartment off the back of their home so their loved one and a caretaker can live their. There may be instances where three people may want to share a home, but establish individual suites with separate full bathrooms and sitting rooms in each suite. While that model may prove advantageous for many reasons, it may require much more square footage and thus be more expensive.
The best way to determine costs is by taking a person-centered approach and determining the needs of that individual or that group of individuals to determine the housing features that work best. Then pricing can be determined.
7. Can you please provide us with more examples of what you mean by housing modifications and adaptations?
Of the many elements that are considered in Universal Design, the main theories demand attention to acoustics, finishes, colors, textures, way-finding, scale, floor transitions, ramps/general accessibility standards, security, and glare.
Keeping in consideration that all these features I will mention will not be appropriate for each individual, here are some examples:
-layers of security so if someone tends to elope, there are a number of mazelike exits that staff can catch up to the person, before they could escape to the street unattended.
-solid wood doors that don’t slam to help with sound insulation
-insulation around air vent systems to insulate for sound
-safety glass in windows
-break away shades that won’t be damaged when pulled
-Hardened walls and surfaces that won’t make holes when punched. Hinges that won’t easily break.
-layout of housing that allows for pacing or walking in a circular motion without restriction
-Proper safety storage systems
-Lighting systems that allow control of the lighting in the environment, including electronic shades.
-offices for staff that provides a second exit for situations of aggressive behavior
-reducing the amount of sharp edges and corners in the home.
-Extra wall insulation or insulation around systems in the house that might have motors.
-Special attention also needs be paid to interior materials—low VOC/urea-formaldehyde paints, glues, and other materials will be used instead of the typical off-gassing materials used in typical home.
-Durable fabrics on furniture
-Soothing color choices on walls
-bathroom floor drains to prevent flooding
-Regulated temperatures in taps to prevent scolding
-Room layouts and storage to promote greater independence in life skills,
-Assistive technology(telecare technology) that might include computer set ups to let an individual say goodnight to parents remotely such as SKYPE; sensors where remote monitoring by staff provides information if loved ones are in bed, wandering the home, opening the refrigerator, taking a shower and more.
-Many people with ASD are extremely sensitive to thermal changes, textures, lighting intensity, strong smells, visual transitions, visual noise, glare, and any other distractions that affect the senses. Using sustainable strategies will also allow building inhabitants to feel a psychological and physical connection to the outside environment. These strategies include visual connections to the outdoors (daylight and views), increase air ventilation, and controllability of systems, which leads to better indoor air quality, increased human comfort, and an overall reduction in toxins.
8. If people reading this wish to contact you or ARCHway how can they do that?
People with autism, service providers or parents of individuals with autism who are wishing to plan for the housing needs of their transitioning teens or adults with autism may contact ARCHway at www.myarchway.ning.com and join our social networking site to stay in close contact with us.
Also see our public service announcement on You Tube with Annie Potts called “A Perfect Storm” on developing community housing options for adults with autism http://www.youtube.com/watch?v=Jtdo6Zh4ok4