Category Archives: Citations for: “Renovating existing housing to provide residents with mobility disabilities the opportunity to live independently”

The telecommunications concept of “transparency” as it relates to disability access

Elevator

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Considerations: BIM  implemnation and shortage of low-income housing for the elderly and disabled

“Addressing the Housing Blueroof TM Technologies in McKeesport, PA”

ABSTRACT

By Richard Behr[1], Mark Sciegaj[2], Robert Walters[3], John Bertoty[4], and Rachel Dungan[5]

++++

Accommodating the preference of the growing elderly population to age independently, at home and in the community, requires innovative and cost neighborhood retrofit plans. Retrofitting existing homes and in filling available neighborhood land parcels with ‘smart homes,’ equipped with technologies that enable monitoring and assessment as means of ensuring the quality and efficiency of home care and health care provision, is intrinsic to these efforts.  Blueroof Technologies, Inc. in McKeesport, Pennsylvania has developed and demonstrated a number of in-home and neighborhood-scale technologies and is working with the local McKeesport municipality to restore an economically distressed neighborhood to accommodate successful aging in place. This paper describes the Blueroof ‘BlueNode’, ‘BlueKiosk’, ‘Smart Cottage,’ and (‘McKIZ’): a McKeesport neighborhood restoration initiative, which incorporates the use of smart cottages and neighborhood-scale interventions to address the housing challenges of an aging population.  The technologies and neighborhood retrofit methods described in this paper could serve as a template for restoring low to middle-income neighborhoods to enable successful, mixed-generation aging in communities domestically and abroad.

Introduction

The aging of the United States population is well documented. The number of U.S. elders is anticipated to grow from approximately 35 million in 2000 to 75 million by 2030 (Administration on Aging, 2010); the portion of the elder population over age 85 is expected to grow fastest.  During this timeframe, the elder population will also increase as a percentage of the total population from 13 to 19.6 percent (Administration on Aging, 2010).  The demographic aging of the United States population constitutes a major achievement of the 20th century, while presenting a major challenge for the 21st.  Among other things, societal aging affects the provision of health and long term care, the sustainability of families, and the ability of communities to adapt and enable elders to remain active, and engaged citizens.

National surveys report that most residents want to stay in their communities and homes as they age.  Nine in ten say it is extremely, very, or somewhat important for them to remain in their community as long as possible (Binette, 2009).  More than seven in ten say it is extremely or very important for them to stay in their own homes as long as possible (2009). To enable elders to remain at home, there has been an increase in home and community based service options, programs to support informal caregivers, and attention to housing design and use of monitoring technology (Lawler, 2001; Alwan, et al., 2007).

This paper describes a comprehensive effort made by Blueroof Technologies Inc., a non-profit corporation in McKeesport, Pennsylvania, to address the – needs of low to middle income seniors to age in place successfully. This paper describes monitoring technology produced by Blueroof including the BlueNode, BlueKiosk, Smart Cottage and the McKeesport neighborhood (‘McKIZ’) restoration initiative. This initiative incorporates the use of smart cottages and neighborhood-scale interventions to address the housing challenges of an aging population in the Third Ward of McKeesport, Pennsylvania.

Background

Smart Home Technology

The collective aging of the global population has created an unprecedented set of circumstances, which require the use of technology in applications that enable the growing elderly population to age in place successfully. Pressures created by this demographic shift have generated interest in the development of technologies and procedures that can help mitigate the health risks associated with aging, and can help facilitate the process of aging independently.  Telemedicine seems to hold great potential for improving the quality of life for these individuals, while also increasing the efficiency and organization of the current health care infrastructure.  Application of IT resources to health care systems facilitates coordination and communication between health care providers and helps lower the overall cost of personal health maintenance.  One source estimates, “…that a full embrace of remote monitoring alone could reduce health care expenditures by a net of $197 billion (in constant 2008 dollars) over the next 25 years…”(Litan, 2008).

Today, technology provides a means by which vital signs of an aging or ailing patient can be monitored remotely. In addition, peripheral monitoring systems and emergency care units have been designed to enable these individuals to live in their own homes without having to sacrifice the safety and security that may be guaranteed by an alternate institution, like an assisted care facility.  Video conferencing and general messaging devices have also been developed to facilitate remote communication between patients and their health care providers or loved ones.  Many of these devices and procedures rely heavily on the use of sensors to monitor vital physiological data, to document movement and events that occur within a home environment, and to prevent potential crises using survey data.  These technologies are often grouped into three broad categories based on their function and value: those which (1) address safety at the environmental level, (2) secure health and wellness at the individual level, and (3) enable social connectedness at the community level (Alwan, et al., 2007).

In recent years, efforts have been made to make these devices more accessible to the general population. However, few attempts have been made to integrate these technologies into a comprehensive system that can be used to equip homes for lifestyles conducive to successful aging in place.  Several organizations have developed systems that can be used in assisted care facilities, and others have worked to design homes hardwired to enable use of these technologies.

Designed by Front Porch, the Eskaton National Demonstration Home is one such housing unit. Eskaton Village, a compound of approximately nine of these independent houses, is located in Roseville, California and is celebrated as one of few comprehensive independent living communities.  Homes featured here come hardwired with the technology necessary to help elders age independently, and grouping them into a community encourages social connectedness and prevents those living independently from feeling isolated (“Eskaton,” 2010).

Elite Care offers similar housing options in Tigard and Milwaukie, Oregon; called Fanno Creek and Oatfield Estates, respectively. These communities also feature “smart homes” that come hardwired to support independent aging in place.  Elders seeking to live in these homes opt into the assisted care community in the same way they would upon entering a nursing home, for example (“Elite Care,” 2010).

The New Courtland LIFE program offers similar social benefits to aging seniors through their membership in an institutionalized living environment. The New Courtland facility located in Germantown, Pennsylvania offers housing in nursing home environments as well as cottages equipped to enable residents to, “…live in a home setting with a family member or loved one”  (“New Courtland,” 2010).  These cottages are hardwired with sensor technology, which helps caregivers monitor health remotely by collecting data based on vital health information.

Mill City Commons in Minnesota is organized in a similar way (“Mill city commons,” 2009), as are the senior living facilities and health service organizations sponsored by the Diakon Lutheran Social Ministries in Pennsylvania, Delaware, and Maryland (“Diakon,” 2010). The communities sponsored by this organization operate on a model that is fairly consistent with other assisted care facilities; living options include either communal housing facilities that are technologically well-equipped, or independent living spaces designed primarily for those seeking to age in privacy who may not have the additional need for remote monitoring technologies and devices (“Diakon,” 2010).

These initiatives provide evidence that such technologies have been successfully applied and utilized in planned communities. However, the work of Blueroof Technologies, Inc. represents the first documented effort to create an entire neighborhood of independent living spaces that includes both hardwired cottages and retrofitted homes in a mixed generation, mixed use context.  The adaptability of the Blueroof Smart Cottage design distinguishes it from others, because it provides elders with the opportunity to age safely in their preexisting home environments without having to sacrifice their personal privacy, health, or security.  The ability to integrate Blueroof technologies economically into existing homes means that fully preparing this part of McKeesport for the pressures of aging requires the new construction of only a few additional smart homes.  This ultimately helps to lower the associated costs significantly, and to mitigate the unanticipated pressures that such a community might face as its population ages.

McKeesport Pennsylvania

McKeesport is a city in Allegheny County, Pennsylvania and is part of the Pittsburgh Metropolitan Area. For most of the 20th century, McKeesport was the leading manufacturer of iron pipes in the United States and its economy thrived on steel production. At its peak, the city’s population totaled 55,000 residents.  With the decline of the domestic steel manufacturing industry, McKeesport’s economy struggled and its population fell to approximately 24,000 by the 2000 census.  Currently, there are 5,349 seniors over age 65 living in McKeesport, which constitutes approximately 21% of the city’s total population.  This city has a large elderly population, relative to others in Pennsylvania Blueroof Technologies, Inc. began operations here as a non-profit corporation in 2002, to help enable successful aging in place through the application of cost-effective smart home technology. (“City of McKeesport,” 2010)

Blueroof Technologies, Inc.

Blueroof Technologies, Inc.’s mission is to use innovation, invention and entrepreneurship to develop state of the art living facilities that keep older adults and persons with disabilities safer, healthier, and living independently at home as long as possible. As part of this mission, Blueroof Technologies has developed a comprehensive program to help McKeesport, Pennsylvania become a leader in Smart Home Technology. It utilizes information technology, sensors, computer hardware and software to monitor and optimize the lives of citizens, thereby avoiding or postponing institutional care by insuring the safety of home environments.

The Blueroof Smart Cottage

In 2005, Blueroof Technologies completed construction and dedication of its model Smart Cottage, located at 400 Spring Street in the Third Ward of McKeesport. The model Smart Cottage was built to demonstrate and test the monitoring technology features and functions.  In addition, Blueroof used the Smart Cottage to guide the development of a floor plan that utilized universal design concepts; this enables it to be adapted to the ever-changing and unique personal needs of each individual owner (“Center for Universal Design,” 2010) in compliance with the Americans with Disability Act  (“U.S. Department of Justice,” 2010). A modular home is a structure designed and built for residential use; constructed in one or more three-dimensional modules in a factory, and transported to the home site for final assembly and completion on a permanent foundation.  Using modular home construction techniques, the Smart Cottage is easily replicated for new construction at a cost of approximately $150,000, excluding land cost. About $10,000 (6.7%) of this $150,000 cost is associated with the technology add-ons (materials and labor) to facilitate aging in place.  The basic information technology infrastructure (wiring, controller, basic sensors) adds ~$2,000.  Internet connectivity, a computer server and an enhanced sensor array add ~$3,000.  Networked cameras and a more advanced sensor array add ~$5,000.

The model Smart Cottage is constructed as a two-story home: the second floor houses the administrative offices of Blueroof, while the first floor (Figure 2) reflects the floor plan of an actual Smart Cottage. This first floor is also used to demonstrate the various features of the Smart Cottage and to train elders about the appropriate use of the technologies it employs.  Smart Cottages designed for actual use by seniors would be only one level to help mitigate the risks associated with falls on internal and external stairways.

FloorplanSmart

Figure 2: First Floor Plan for Blueroof Smart Cottage.

The Smart Cottage first floor plan is 1,040 square feet (note: the staircase in Figure 2 provides access to the administrative and research offices of Blueroof Technologies, Inc. It would not be included as part of a typical smart cottage designed for use). The Smart Cottage’s 1,040 square feet of living space is on a single level, which enables easy and safe access to all rooms. All entrances and hallways in the space are ADA compliant enabling easy access to all rooms.  Pocket doors are used in all interior doorways to facilitate opening and closing of doors, and to promote the safe and efficient use of the space.  The bathroom features a lipless shower area to allow for walk-in and wheel chair accessibility. Data channels (Figure 3) are embedded in the walls of the cottage during the manufacturing process.  Wires from each sensor can be dropped down these channels and connected to the controller at any time (now or later).

Fig3Smart

Figure 3: Data Channel Extending into Basement.

This design feature greatly enhances the technology system and facilitates the installation of sensors and other devices as needed.

Quality of Life Sensors

The Blueroof Smart Cottage employs a variety of sensors and devices, depicted in Figure 4, which work together to help ensure high quality of life for those living independently. Arrows in Figure 4 indicate the locations of hard wired data channels in the model Smart Cottage. Preexisting homes can be also retrofitted with these technological devices using wireless capabilities, enabling individuals to age more successfully within the comfort of their own home. The use of wireless devices also negates the need to imbed hard wires inside the walls of existing homes, which is sometimes difficult and always labor intensive.

smartfig4

Figure 4: Smart Cottage Sensor and Data Channel Locations.

Once installed, the devices and sensors in Figure 4 are logged into the overall network and monitored remotely. Several general types of sensors are used to monitor various activities and “events” that occur within an independent living environment.  Some basic sensors indicate simple changes in status: e.g., on or off, pressure/motion/contact or none, etc.  Other sensors can be linked to various household systems and can function as catalysts to generate change within an environment; e.g., turning a light on or off in response to a signal from a pressure sensor in the floor.

Pressure-contact sensors under bed mattresses and sofa cushions are used to measure the amount of time an individual spends resting or sleeping. These sensors are low cost, small in size and very reliable and they enable the monitoring of sleeping patterns and daily activities such as TV watching.  This can help caregivers identify how to better understand and regulate these patterns to suit patient needs.  Additionally, pressure sensors embedded in the floor can be used to track an individual’s movement throughout his or her household.  Pressure and motion sensors can work together to serve as a fall detection system; evidence of motion toward a specific room followed by a lack of pressure at the anticipated destination suggests that an accident may have occurred along the way.  This event detection provides caregivers with valuable information they need to respond quickly to emergencies and possible injuries.

Contact sensors can be used to record the number of times closets, drawers, and cabinets are accessed. Assuming caregivers are familiar with the layout of the home, this information enables them to make relevant inferences regarding the elder’s ability to access daily necessities like food and medications.  These sensors can even be linked to items like toothbrushes to aid in observing patterns of personal hygiene.  On/off sensors are connected to major appliances (television, stove, refrigerator, etc.) to record times and patterns of usage.  Water flow sensors on toilets and faucets help determine which devices are being utilized and for how long. This type of monitoring can provide valuable information about behavioral patterns like eating, performing daily tasks, and even watching television.  Measurement and regulation of these patterns helps caregivers know that an individual is functioning normally, and assists in recognizing abnormalities in patterns of activity so interventions can be made if necessary.

Additionally, assessment of activity patterns based on these sensor data can potentially offer insight into physiological health status (metabolic rate, circadian cycles, etc.) as well as the onset and progression of less obvious disorders such as depression and dementia. This ability to collect data bodes well for future research opportunities using the existing infrastructure.

Cost Effective Wireless Monitoring Technology for Successful Aging in Place

While the Smart Cottage demonstration house described above is a viable and cost-effective construction option for seniors seeking new homes, it is not an option for the majority of elders who already own a home. To address the needs of existing home owners who wish to age in place, Blueroof has recently developed a suite of cost effective wireless technologies that are well suited to home retrofit applications. These wireless data acquisition/transmission systems are intended to function at both the scale of an individual home (the ‘BlueNode’) and also of a neighborhood (the ‘BlueKiosk’).

The BlueNode is a wireless technology system (Figure 5) for appliance control, security, health/wellness monitoring and easy internet connection to communicate with care providers and loved ones. The BlueNode also has the ability to collect and analyze a great deal of medical data, quality of life data, and home safety data, and then create a succinct, usable output for health care providers and family members.

5figSmart

Figure 5: The BlueNode System.

The BlueNode system (Figure 6) consists of a wireless mesh for the residence, unique quality of life (QoL) sensors to interface to the BlueNode via a wireless mesh, and a whole house hard drive to record all events and associated data. Circuitry, including a small PC/server to interface to a LCD HDTV/monitor, a cable modem, a router and a wireless access point enables the ‘BlueNode’ to connect to the Internet for in-home activity monitoring and remote access to the monitored space – if the appropriate access authorizations are in force. The BlueNode design allows it to be used readily for retrofitting homes and apartments.  In the present Blueroof Smart Cottage, all sensors are interfaced to the master system via hard wires, which lowers the cost of new construction.  In existing residences, however, retrofit hard wiring increases installation costs significantly.  The wireless feature of the BlueNode decreases retrofit installation costs significantly.  Each BlueNode costs approximately $2,000, while the BlueKiosk, still under development, has a target unit cost of approximately $5,000.

 

Figure 6: BlueNode Block Diagram.

 

The medical monitoring component of the BlueNode consists of a home based system developed by commercial vendors. This system enables the collection and analysis of medical data to be performed in each residence, without requiring travel to hospitals or doctor offices.  The BlueNode is able to send messages to caregivers and family members via email and telephone messages, using a conventional telephone land line.  Interfaces to the phone system and to the cable are contained in the BlueNode.

Each BlueNode is able to control five lights (e.g., a bathroom light) in each home or apartment and record to the usage of the HVAC system and other electric appliances. ‘Vizia’ (Zwave) is the primary method used to interface with lights and appliances.  Zwave is a technology that uses RF (radio frequency) signals to control lights and electrical loads from any location inside or outside the home.  Zwave needs no new wires; it is an inexpensive and reliable solution for home automation through signals sent over the in-home electrical power lines (“Zwave,” 2009).

As described above, each BlueNode system has its own web page that allows caregivers and family members to view and control selected activities in the home or residence. Video conferencing is another important component of this system, and the BlueNode contains a high quality, robust and easy to use video conferencing system using Skype and a commercially available high definition web camera.  This system allows residents to communicate routinely with family, friends and medical personnel (“Skype,” 2010).

Used in congregate elder housing (e.g., apartment buildings, assisted living facilities, etc.) individual BlueNode systems can transmit data in a wireless transmission mode to a local BlueKiosk in the Community Room or to a remote Data Analysis Center (DAC). Alternatively, each BlueKiosk could service the information exchange needs of a cluster of close by individual homes equipped with BlueNodes.  These data are processed in the DAC, and information is delivered to many different types of users. (Figure 7).

 

Figure 7: Block Diagram of the Overall Blueroof Technologies Data Acquisition and Dissemination System.

 

The McKeesport Independence Zone (‘McKIZ’) Smart Community

Blueroof has embarked on Project McKeesport Independence Zone, called ‘McKIZ’, an initiative that enhances McKeesport’s long term development plan by producing new housing to promote “downtown living” and establish a community model, potentially replicable in other communities across the state and nation. Project McKIZ is a multi-year initiative that holds the promise of enhancing the quality of life for residents in the area, while also encouraging community development, employment growth and economic stimulation through local job creation. Local contractors and labor are used wherever possible. Blueroof has broken the McKIZ project into four phases as follows:

Phase I 2007-2008 Design, layout, site planning and recruit partners.
Phase II 2008-2011 Construct 5 homes to demonstrate concept and commitment.
Phase III 2012-2014 Construct 10 homes using local labor.
Phase IV 2015-2020 Manage and operate McKIZ. Ensure that it grows into a     desirable community.

 

This project involves the development of a cluster community of Smart Cottages in McKeesport that is affordable, accessible, green and technologically equipped to meet the unique needs of challenged individuals including, but not limited to:

  • Veterans with disabilities
  • Individuals living in group homes
  • Older adults
  • Other people with disabilities

The McKIZ Community is located in the Second and Third Wards of McKeesport, within walking distance to the downtown area of McKeesport and to a Port Authority Transit station. McKIZ will enable extension of the paradigm of a smart and assistive home to the broader context of a smart, assistive, mixed generation community. McKIZ will incorporate devices and methods, proven effective in the Blueroof Smart Cottage, into a small urban community; homes, recreation facilities, retail establishments, home and community based long-term care facilities, and pedestrian friendly city streets that also accommodate vehicular traffic and public transportation.  Project McKIZ will enhance the redevelopment of McKeesport and make the area more desirable to potential home buyers and commercial activities.

Figure 8 is a sketch of the architectural plan of McKIZ.  As of the second quarter of 2010, Blueroof finished three homes and is currently working on two more adjacent to the group homes.

Legend


  • Smart Cottage
  • Group Home
  • Blueroof Research Cottage
  • Future(2010)
  • Future (2010)


Figure 8:  The McKeesport Independence Zone ‘McKIZ’ Site Plan.

The McKIZ concept is one that could be replicated across the United States and abroad, to help revitalize economically distressed areas containing a high concentration of low to middle income senior citizens.

Conclusions

Accommodating the health care costs of the ever increasing numbers of retirees in “the rich world” has been called “the biggest bill in history” (“Biggest bill,” 2009). Clearly, we must address this daunting demographic challenge with broad, innovative and cost effective solutions.  Providing for the low to middle income segment of the elderly population will present a great challenge, as expensive aging in place solutions (e.g., expensive technologies and newly constructed assisted living/nursing facilities) will not be replicable on a large scale due to economic constraints.

Highlighted in this paper is a comprehensive set of appropriate, technology-driven solutions developed by Blueroof Technologies in McKeesport, PA; designed to enable successful aging at home and in communities with other low and middle income residents of all ages. The prototype “smart home” designs, equipped with powerful, yet cost effective wireless sensor technologies, could represent viable solutions for a new generation of manufactured housing options and for cost effective retrofits of existing houses and neighborhoods.  Such retrofit solutions will be absolutely necessary for our society to accommodate the needs of our increasing aging population.

References

Administration on Aging (2010) Profile of Older Americans, 2009. Retrieved from http://www.aoa.gov/AoARoot/Aging_Statistics/Profile/index.aspx on March 2, 2010.

Alwan, M., Nobel, J., & Wiley, D. (2007). State of technology in aging services. Interim report submitted to: blue shield of California foundation. Retrieved from http://www.agingtech.org/documents/bscf_state_technoloy_phase1.pdf on March 2, 2010.

Biggest bill in history. (2009, June 13). The Economist, 13.

Binette, J. (2009, December). New York livable communities surveys of AARP members 50+: fact sheets, annotations, and methodology. AARP: Surveys and statistics. Retrieved from AARP — http://www.aarp.org/home-garden/livable-communities/info-12-2009/ny_livcom_09.html on March 2, 2010.

Center for Universal Design: NC State University. (2008). Retrieved from http://www.design.ncsu.edu/cud/about_ud/udprinciples.htm on March 2, 2010.

City of McKeesport. (2010) History. Retrieved from http://www.mckeesport.org/ on March 2, 2010.

Diakon Lutheran Social Ministries. (2010). Retrieved from http://www.diakon.org/ on March 2, 2010.

Elite care: the future of elder care. (2010). Retrieved from http://www.elitecare.com/ on March 2, 2010.

Eskaton senior residences and services. (2010). Retrieved from http://www.eskaton.org/index.html on March 2, 2010.

Lawler, K. (2001). Aging in Place: Coordinating Housing and Health Care Provision for America’s Growing Elderly Population. Retrieved from http://www.jchs.harvard.edu/publications/seniors/lawler_w01-13.pdf on March 2, 2010.

Litan, R.E. (2008). Vital signs via broadband: remote health monitoring transmits savings, enhances lives. Better Health Care Together. Retrieved from http://www.betterhealthcaretogether.org/www/docs/broadband.pdf. on March 2, 2010.

Mill City Commons. (2009). Retrieved from http://www.millcitycommons.org/homepage on March 2, 2010.

New Courtland. (2010). Retrieved from http://www.newcourtland.org/index.php on March 2, 2010.

Skype. (2010). Retrieved from http://www.skype.com/intl/en-us/home on March 2, 2010.

United States Department of Justice, the. (2010). Retrieved from http://www.justice.gov/

Zwave Products, Inc. (2009). Retrieved from http://www.zwaveproducts.com/ on March 2, 2010.


List of Figures

Figure 1: The Blueroof Model ‘Smart Cottage’ in McKeesport, PA.

Figure 2: First Floor Plan for Blueroof Smart Cottage.

Figure 3: Data Channel Extending into Basement.

Figure 4: Smart Cottage Sensor and Data Channel Locations.

Figure 5: The BlueNode System.

Figure 6: BlueNode Block Diagram.

Figure 7: Block Diagram of the Overall Blueroof Technologies Data Acquisition and Dissemination Plan.

Figure 8: The McKeesport Independence Zone ‘McKIZ’ Site Plan.

 ++++

[1] Richard Behr, Ph.D., P.E.: Charles and Elinor Matts Professor of Architectural Engineering, Director of the Smart Spaces Center, the Pennsylvania State University  ([email protected])

[2] Mark Sciegaj, Ph.D., MPH: Associate Professor of Health Policy and Administration,  Associate Director of the Smart Spaces Center, the Pennsylvania State University ([email protected])

[3] Robert Walters, P.E., MSEE, Professor, the Penn State University, [email protected]

[4] John Bertoty, BS in Ed, MEd, Executive Director of Blueroof Technologies, Inc.

[5] Rachel Dungan: Research Assistant, Penn State Smart Spaces Center, Junior, Schreyer Honors College, Majors in Biobehavioral Health and Music Composition ([email protected])

====as possible while maintaining a high quality of life.

http://news.psu.edu/story/161340/2011/01/24/smarts-spaces-focus-architectural-engineering-seminar

 

Text

Built in 1910, the home of

 

18bathroom

 

Sognificant life changing 2001 move requering special disability assist from San Jose California to Philadelphia Pennsyvania.

Stairs

stairs

My credentials for writing an academic paper on renovating existing housing for residents with a mobility disability

This is a photograph of the house where I lived when I lost the ability to walk.

42-kimberlyresized

The year was 1995. I was 48 years old. I lived with my wife and two daughters–Joanna age 9 and Amelia age 4– in Durham, N.C.  I was working as a technical writer  for Northern Telecom. Northern Telecom manufactured large telephone switches. My job was to explain to companies how to operate sophisticated software located on a switch.

Across the road from my office (at nearby Research Triangle Park) was a research facility encircled by a jogging track. I regularly jogged on the track. During a six-week period in 1995, I went from being able to jog on the track to being unable to walk at all. Indeed I became unable to stand without holding or leaning on to an object such as a wall, a desk, a chair, a bed….

During this period when my mobility was getting rapidly worse, I spent a lot of time going from doctor to doctor to find out what was wrong. My insurance required I begin the quest at my primary care physician’s office. My physician referred me to a neurologist for tests. The neurologist referred me to the Neurological Clinic at Duke University. The head of the clinic suggested I speak to an oncologist.

I had been treated with high doses of radiation administered by a linear accelerator. Radiation was the treatment recommended because I had been diagnosed as having Hodgkin’s disease, a cancer of the lymphatic system. I was treated in 1976. When a tumor reappeared in 1989, I was treated with radiation again. I was surprised to discover my mobility problem was a consequence of radiation treatment. My radiologist in 1989  told me before beginning treatment the likely side effects. However, paraplegia was not one of the side effects listed. Nor, had my primary care physician associated my mobility problem with my cancer treatment.

The head of the oncology clinic at the University of North Carolina at Chapel Hill determined  my mobility problems were  a consequence of radiation burning my spine. The oncologist compared the radiation burn to that of a small fire getting larger. At some point; namely, 1995, he explained, the fire had become sufficiently large as to destroy my mobility.

The oncologist prescribed large doses of a steroid drug. He said the drug probably would not work. However, “You have nothing to lose by trying.” The steroids did not work. In fact, the drug had considerable nasty side effects. It was during the period that I was on steroids that I fell in my house and dislocated my right shoulder.

++++

Raison d’etre for this post.

I am co-authoring a technical report entitled, “Renovating existing housing to provide residents with mobility disabilities the opportunity to live independently.” When completed, the report will be published as a technical paper on the website of the Pennsylvania Housing Research Center.

For  purposes of comparison, an already published report is entitled, “Impact of Building Codes on Exterior Plaster Assemblies in Pennsylvania.” If you have time, take a look:

 http://www.phrc.psu.edu/assets/docs/Publications/PHRC%20Final%20Stucco%20Report.pdf

Even a cursory glance makes clear this report follows the rules for academic publications. Citations are required for statements of fact.  The appropriate generic style manual regarding how to make citations is the Publication Manual of the American Psychological Association (APA). The APA style manual is the one most helpful to faculty, postgraduates, and graduate students at Penn State’s Department of Architectural Engineering . The APA manual is  (easily modified to comply with the modest variations contained in engineering manuals especially when using Zotero)  for such academic publications as:

While planning the PHRC report, I asked  Dr. Ali Memari, Director of the Pennsylvania Research Center and my co-author, the rules for citing my observations on renovation strategy and priorities based on my 21 years experience as a paraplegic.

Specifically, after re-reading a portion of the report I had written, I realized statements of fact required citation. Given “fact” (as I used it) was based on my knowledge and experience, I was concerned academic scholarship required an authority to confirm it.

Dr. Memari replied no citation is required because I am an expert. Of course, “Renovating existing housing to provide residents with mobility disabilities the opportunity to live independently”  does require citations regarding matters of fact NOT based on my expertise.

I have been incorporating citations from such sources as:

The more I looked at the citations I am incorporating, the more I realized that it could be useful to cite myself. In the past 21 years since I became a paraplegic, I have been published widely on the subject of renovating housing for the disabled and elderly.

Here are three examples:

  • For e-architect.co. UK,  a website receiving nearly one million hits a day from the global building community see: “Zaha Hadid’s Miami compared to my life in rural “Rust Belt” Pennsylvania.” This is one of the columns I have been publishing on disability issues for the past four years. In the discussion of “Rust Belt” PA, I discuss Blueroof Technology’s research cottage in McKeesport. At Blueroof, Penn State Engineering Professor Robert Walters designed housing for low-income disabled residents. He inserted sensors at factory-constructed housing which instantly notify caregivers if a resident falls in the shower
  • For Seeking Alpha–a site focused on financial and investment advice–see“Marketing Opportunities As A Consequence Of ‘Baby Room’ Retirement”
  • For the publication of the home medical equipment industry, see HME News: “Put on your 3-D glasses.” The article discusses Dr. John Messner’s Immersive Construction (ICon)Lab  at Penn State. The emphasis is on designing health-related projects, including the ability to transform existing housing so it is accessible to the mobility disabled.

++++

Regarding “Renovating existing housing to provide residents with mobility disabilities the opportunity to live independently” the report  explains that the ideal client for the architect, general contractor, or specialized subcontractor (e.g., the person installing the ramp to enter and exit the residence) is the person who has become disabled. Ideally, she or he should be directing the architect or general contractor or other provider of renovation.

Academic publications describe a house renovated by the person residing in it as “experienced-based design.” Individual preferences do matter. For example, my kitchen does not have any cabinet doors. Anyone entering my kitchen can see at a glance I have several cans of tomato soup. I do not care if you know I have tomato soup. Some people do care. This may not seem a significant design concern. However even seemingly insignificant concerns can matter.

When I became a paraplegic suddenly without warning, I was too overwhelmed to make design decisions. Also, my physicians had prescribed medication that impaired my judgement. In essence, my caregivers were making design decisions while I was otherwise distracted. Design decisions [even no action is a design decision] are most productive when made by a caregiver who has my preferences in mind when telling the architect how to proceed.

Today’s post begins a series designed to document my expertise as a paraplegic. My intention is to provide supplemental (and presumably helpful) detail to readers of the PHRC report I am co-authoring . There are a variety of instances where explaining how I developed my expertise can be useful. Today, I think it useful to describe my state of mind which led to my dislocating my shoulder.

I plan future posts targeted to the report to provide supplemental information on such subjects as:

  • The telecommunications concept of “transparency” as it relates to disability access. Accessibility is most effective when access is so designed that the person with a disability is not continually reminded that he or she is disabled. The chapter on getting to the second floor presents this concept most clearly. Getting into an elevator or a lift is far preferable than taking a stair lift. A stair lift requires one transfer from a mobility device to stair lift. Then, at the top of the stairs, for mobility, transfer to another mobility device is required. Worthy of note is in the past 10 years, elevators have become considerably less expensive. At the same time, manufacturers have developed technology to make it easier to install an elevator throughout a residence, rather than require it be attached to a shaft.
Photograph taken March 13, 2016 showing permanent damage to my right shoulder. Had my residence been renovated appropriately to accomodate my mobility disability, I would not have experienced 21 years of pain and lack of use. Alicia J. Spence, my physical therapist at Phoenix Rehab, State College, PA says that failure to stretch this shoulder on a regular basis could result in the loss of my ability to dress myself. Photograph by John Harris
Photograph taken March 13, 2016 showing permanent damage to my right shoulder. Had my residence been renovated appropriately to accommodate my mobility disability, I would not have experienced 21 years of pain and lack of use. Alicia J. Spence, my physical therapist at Phoenix Rehab, State College, PA says that failure to stretch this shoulder on a regular basis could result in the loss of my ability to dress myself. Photograph by John Harris

The Focus is on experience-based design

I devote considerable space in this post on the consequences of falling the importance of its prevention. Yet, the focus here is on who should be instructing the architect et al. In my case, the unexpected and overwhelming catastrophe that resulted in my becoming a paraplegic made me incapable of dealing with an architect, general contractor, or other specialist. Ideally, since I would have benefited, my inability to act on my behalf was unfortunate. My daughters were too young. My wife understandably was overwhelmed. At question was not merely guard rails in the shower, for example. At question was whether I would be able to work to pay the mortgage, to hold on to the house, to support our children. Catastrophe it certainly was.

Twenty-one years later, I look back at the situation and realize that there were indeed caregivers willing to help if only we knew how to ask. Caregivers are in the difficult situation of trying to understand how to offer help. Families are similarly in the difficult situation of knowing how to accept help. The PHRC report I am co-authoring will  provide advice to caregivers and families.  Fortunately the report will benefit from my experience when one caregiver did emerge who was instrumental in my getting beyond the role of victim.

++++

Addendum

On December 12, 2006, I described the experience of dislocating my shoulder for WPSU radio.

Toe_hold_WPSU

Go here to listen: http://legacy.wpsu.org/radio/single_entry/LL-1756/

Or, read the transcript

Toe-Hold on Penn State

For most of my life, my toes worked perfectly well. Then, around the age of 48, they gave up their natural function. I went from “occasional jogger” to someone who could not walk across a room. Eventually, my doctors figured out why. I had been treated for cancer, and the radiation had destroyed nerves in my spine.

On a winter day in 1995, fueled by enthusiasm for a brilliant biography of Martin Luther King, Jr.,  I just HAD to read a passage to my wife.  I dashed from the bedroom toward the kitchen—forgetting that my dashing days were over. My toes curled under my right foot and I fell and rolled, dislocating my shoulder. The pain was rapid and intense.

That was at my house at Durham, North Carolina. Now, some 12 years later, I am at Penn State as a graduate student in Rehabilitation Counseling. In the interim, I have come to preach the gospel of assistive technology. This is technology that would have prevented me from dislocating my shoulder.

Here in the graduate dormitories on the western frontier of the Penn State campus, I  can drive my scooter out of my apartment and through the front doors of the apartment complex (which have an electric key providing both access and security). I can cross the bridge over Atherton, a busy street, go to the library and then to the grocery store on Allen Street where I fill my book bag with groceries. I can do all this, and I can go 25 miles before I have to recharge my scooter.

Since my disability began, I have never had this kind of accessibility that Penn State makes possible. Twelve years ago, if I had had equivalent access for an environment with dangerous roads and few sidewalks; namely, if I had

  • a scooter
  • a ramp for my house
  • a wheel chair lift for my car

maybe I would have been able to work productively. Instead, my energy levels and my jobs seemed to fizzle out at the same time.

In the 12 years since my disability began, the three following positive factors have combined to increase opportunity and dignity for the physically disabled:

  • Greater availability of assistive technology
  • Improved environmental design
  • More effective enforcement and compliance with the Americans with Disability Act (ADA), which, among other things [i.e. The Rehabilitation Act of 1973]  provides the standards for the ramps, street cuts, and sidewalks I use when I scoot around Penn State

When I receive my degree, I am scheduled to work as a counselor for the Office of Vocational Rehabilitation (OVR). At OVR, I will be finding jobs for the mobility, visual, and hearing disabled and for those with other disabilities. For technology to be effective, its use must be combined with the proper environment.

My job training as an OVR counselor begins here at Penn State. A high priority for me is to help the Office of Physical Plant make Penn State’s travel routes for wheelchairs, powerchairs, and scooters safer and easier to use. Just because access at Penn State is good does not mean that it is good enough. Unfortunately, I can cite too many instances where sidewalks end without warning (with a sharp drop for stairs), where there is an absence of helpful signs at entranceways, where street cuts are impassable because the cement is so high or so badly poured.

++++

References used in this post

1.