Disability and Rehabilitation: Assistive Technology
ISSN: 1748-3107 (Print) 1748-3115 (Online) Journal homepage: http://www.tandfonline.com/loi/iidt20
From people-centered to person-centered services, and back again Marcia J. Scherer Ph.D., MPH, FACRM To cite this article: Marcia J. Scherer Ph.D., MPH, FACRM (2014) From people-centered to person-centered services, and back again, Disability and Rehabilitation: Assistive Technology, 9:1, 1-2 To link to this article: http://dx.doi.org/10.3109/17483107.2013.870239
Published online: 05 Dec 2013.
Submit your article to this journal
Article views: 179
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Citing articles: 3 View citing articles
Full Terms & Conditions of access and use can be found at http://www.tandfonline.com/action/journalInformation?journalCode=iidt20 Download by: [Chinese University of Hong Kong]
Date: 06 November 2015, At: 07:07
http://informahealthcare.com/idt ISSN 1748-3107 print/ISSN 1748-3115 online Disabil Rehabil Assist Technol, 2014; 9(1): 1–2 ! 2014 Informa UK Ltd. DOI: 10.3109/17483107.2013.870239
EDITORIAL
Twelve years ago, almost to the day, I wrote the introduction to the first special issue on assistive technology for Disability and Rehabilitation [1]. Then nine years ago almost to the day, the first issue of Disability and Rehabilitation: Assistive Technology was published as a stand-alone journal. In the introduction to the special issue back in 2002, I emphasized our global move from societies emphasizing mass population problems that favored people over person (such as the containment of contagious diseases and the implementation of public education) to a focus on the person and individual. As I depicted in Figure 1, and wrote in 2002: . . . the 20th century focus was on people and their needs as a population. Often, each country had a fairly discrete population sharing a culture and language different from many other countries. The individuals comprising any given country’s population were rarely the focus of attention, nor were products or devices uniquely shaped or crafted to fit individual needs and preferences. In the 20th century, it was common to have, say, one style of wheelchair prescribed for many people. Options and choices in wheelchairs and other assistive technologies, if they existed at all, were certainly not vast. And to better contain and control disease and disability, society decreed that people had to be treated and managed by healthcare providers. Services for people with disabilities and chronic health conditions, thus, came under the purview of medical professionals who, in keeping with their training, viewed disability against the normal curve of the state of the mass population’s health and, thus, as a health problem which required treatment and cure. [1, p. 1] . . . Now in the twenty-first century, we have . . . largely succeeded in building our service infrastructure, and because we have the legislation and policies in place to protect our health, safety and rights, we can focus on the person. We have changed our focus from people with disabilities as belonging in the lower tail of the normal curve and requiring treatment and segregation, to the person with a disability and how obstacles to living in the middle (or higher) of the normal curve can be eliminated or minimized. We can refine AT products to conform to varied preferences and needs of individuals. [1, p. 3] In 2002, approximately 27 000 different AT products were available. Today, that number is close to 40 000 [2].
Spotting needs and trends Clearly, we do not have a shortage of assistive technology devices (ATD) to address the individualized needs of persons
with disabilities. When we consider the availability of both specialized and everyday products, there is no need to have a one-size-fits-all view of ATD selection and service delivery. Yet, I fear that is where we are increasingly headed. In 2002 our world economies were healthier than they are today. Prosperous economies can afford to be generous and liberal with resources and less concerned with waste. But the global recession in 2008 created considerable belt-tightening and increased frugality. Some services were scaled-back, others cut altogether and there became a widespread need to be more efficient. Now it seems the twentieth century people-focused efforts and the twenty-first century person-focused efforts depicted in Figure 1 may be reversed. That is to say, we may be going back to more of a one-size fits all approach in the name of economizing. We bear some of the blame for this situation ourselves. When we could focus on the person and obtain evidence of successful ATD outcomes, we did not do so often enough. We certainly published case studies, and still do, and had good anecdotal evidence, but we could have done more pre–post studies. While not considered by many to be as rigorous as randomized controlled trials and well-matched comparison-group studies, and viewed as quasi-experimental, we know that how individuals compare data-wise is likely different from how they compare person-wise. Thus, pre–post study designs are powerful in demonstrating positive change in people over time, which is what we are truly all about. For 30 years we have used a 30% ATD non-use or abandonment rate. It is unlikely that the stability of this figure is due to the lack of product options. It is likely that it is a result of the means by which products are obtained, that is the assistive technology service delivery system
Statements made then and their accuracy now
20 13
Downloaded by [Chinese University of Hong Kong] at 07:07 06 November 2015
From people-centered to person-centered services, and back again
In the 2002 article, I made points that bear reviewing. Let us see how current some of them are: Then: Individuals with disabilities who are involved in the decision in a meaningful way will generally be more satisfied with services overall. Now: This is still very true and will remain so. However, consumer satisfaction is becoming unimportant to payers and others. They want to see functional improvement. This can include consumers’ subjective ratings of their performance of activities over time (see pre–post study design discussion above). Then: The perspective of the user will increasingly be the driving force in device selection, not which technology is most affordable or quickest to obtain.
2
M. J. Scherer
Disabil Rehabil Assist Technol, 2014; 9(1): 1–2
People-Focused Efforts N O W Person
Service Infrastructure Assistive Technology
Legislation & Policy
20st Century
Person-Focused Efforts
Downloaded by [Chinese University of Hong Kong] at 07:07 06 November 2015
Person Service Infrastructure Assistive Technology
Legislation & Policy
I T’ S R E V E R S E D
21st Century
Figure 1. Our changing emphasis from people to person and back to people.
Now: I am sorry to say that I believe this has largely reversed. Then: Many professionals, parents and consumers say they do not have the information or training they need to confidently evaluate technology options and select the most appropriate device. Now: This is accurate today. Then: Professionals require a means of determining consumer preferences and priorities and having these guide the AT selection. It is no longer acceptable to point to technological solutions before the prospective user’s goals are fully defined and the individual’s needs and preferences are apparent. A particular technology should never become the place to start; the needs, desires and goals of the user should be the beginning point. Now: This is accurate today and, in my opinion, more important than ever. Then: People will select their assistive technologies based, first, on how well they satisfy needs and preferences, then according to their attractiveness and appeal. If the device meets the person’s performance expectations and is easy and comfortable to use, then a good match of person and technology has been achieved. It is also crucial that users have a choice of options and that healthcare and rehabilitation professionals make them available since each individual will find that some of the available options are more productive and work better than others. By working together as a team, consumers and rehabilitation professionals can identify effective technologies that are also affordable. Now: This is accurate today and, hopefully, will always be current. Then: The field of AT is establishing its own service infrastructure. Now: Thankfully, this is current and accurate. While we always collaborated across borders, we have strengthened this over time. And we are doing this in the area of assistive technology service delivery. For example, the new European Union project ENTELIS has the goal of reducing the digital divide in ICT and ICT-AT for groups at risk of exclusion and
will focus on persons with any disability plus those of older age. There will be an exchange of good practices and the development of a stable network to address ICT and ICT-AT training to help in the development of a framework to grow towards a common strategy in Europe for the ICT-AT-based life-long learning of people with disabilities of all ages. Clearly gains have been made over the past nine years, but in many areas we have lost some ground. More of a focus on service delivery processes is needed. We also need to consider the fact that we provide consumers with much more than products. In addition to ATDs, we try to match them with the most appropriate community resources, personal assistance, strategies, service animals and so on, and the best blend of these. Perhaps a change in terminology would convey the vast array of supports we consider. One term proposed at the 12th Association for the Advancement of Assistive Technology in Europe (AAATE) conference in Portugal was assistive solution [3].
1984 and thirty years more: where are we headed? Not only have ATDs become more computerized and electronic, but so has the way we do business. Many Orwellian predictions have occurred! In addition to the emphasis on evidence-based medicine, we are seeing use of the electronic medical record become widespread. Coding, documentation and record-keeping requirements keep growing. Computerization has made data collection and transmission easy. At the same time, Human Subjects Review Boards have made it more difficult. More regulations will make us spend more time with data and record-keeping than with consumers. Thus, when I wrote in 2002 that we have moved from services based on the medical model to one focused on consumer social participation and empowerment, the reality today is that this trend, too, may be reversing. Disability and Rehabilitation: Assistive Technology will continue to feature articles that will serve as roadmaps for us as we navigate the future of our field. We aim to document what is working and why so that we may all gain from our colleagues’ experiences regardless of where they, and we, live and work. Original research articles, case studies, product and device descriptions, and review articles are all appropriate for this journal. We will also feature selected papers from key international conferences to add to their global reach. I look forward to your contributions to our mutual effort to enhance the research and practices in our field. Marcia J. Scherer, Ph.D., MPH, FACRM Editor, Disability and Rehabilitation: Assistive Technology President, Institute for Matching Person & Technology 486 Lake Road, Webster, NY 14580, USA E-mail: [email protected]
Declaration of interest No conflicts of interest
References 1. Scherer MJ. The change in emphasis from people to person: introduction to the special issue on Assistive Technology. Disabil Rehabil 2002;24:1–4. 2. AbleData: Your Source for Assistive Technology Information. Available from: www.AblaData.com. 3. Scherer M. (2013, November). Should we change ‘‘device’’ to ‘‘solution’’?, Friends of ATIA Newslett: Global Edition. Available from: http://www.atia.org/i4a/pages/index.cfm?pageid¼4495
ISSN: 1748-3107 (Print) 1748-3115 (Online) Journal homepage: http://www.tandfonline.com/loi/iidt20
From people-centered to person-centered services, and back again Marcia J. Scherer Ph.D., MPH, FACRM To cite this article: Marcia J. Scherer Ph.D., MPH, FACRM (2014) From people-centered to person-centered services, and back again, Disability and Rehabilitation: Assistive Technology, 9:1, 1-2 To link to this article: http://dx.doi.org/10.3109/17483107.2013.870239
Published online: 05 Dec 2013.
Submit your article to this journal
Article views: 179
View related articles
View Crossmark data
Citing articles: 3 View citing articles
Full Terms & Conditions of access and use can be found at http://www.tandfonline.com/action/journalInformation?journalCode=iidt20 Download by: [Chinese University of Hong Kong]
Date: 06 November 2015, At: 07:07
http://informahealthcare.com/idt ISSN 1748-3107 print/ISSN 1748-3115 online Disabil Rehabil Assist Technol, 2014; 9(1): 1–2 ! 2014 Informa UK Ltd. DOI: 10.3109/17483107.2013.870239
EDITORIAL
Twelve years ago, almost to the day, I wrote the introduction to the first special issue on assistive technology for Disability and Rehabilitation [1]. Then nine years ago almost to the day, the first issue of Disability and Rehabilitation: Assistive Technology was published as a stand-alone journal. In the introduction to the special issue back in 2002, I emphasized our global move from societies emphasizing mass population problems that favored people over person (such as the containment of contagious diseases and the implementation of public education) to a focus on the person and individual. As I depicted in Figure 1, and wrote in 2002: . . . the 20th century focus was on people and their needs as a population. Often, each country had a fairly discrete population sharing a culture and language different from many other countries. The individuals comprising any given country’s population were rarely the focus of attention, nor were products or devices uniquely shaped or crafted to fit individual needs and preferences. In the 20th century, it was common to have, say, one style of wheelchair prescribed for many people. Options and choices in wheelchairs and other assistive technologies, if they existed at all, were certainly not vast. And to better contain and control disease and disability, society decreed that people had to be treated and managed by healthcare providers. Services for people with disabilities and chronic health conditions, thus, came under the purview of medical professionals who, in keeping with their training, viewed disability against the normal curve of the state of the mass population’s health and, thus, as a health problem which required treatment and cure. [1, p. 1] . . . Now in the twenty-first century, we have . . . largely succeeded in building our service infrastructure, and because we have the legislation and policies in place to protect our health, safety and rights, we can focus on the person. We have changed our focus from people with disabilities as belonging in the lower tail of the normal curve and requiring treatment and segregation, to the person with a disability and how obstacles to living in the middle (or higher) of the normal curve can be eliminated or minimized. We can refine AT products to conform to varied preferences and needs of individuals. [1, p. 3] In 2002, approximately 27 000 different AT products were available. Today, that number is close to 40 000 [2].
Spotting needs and trends Clearly, we do not have a shortage of assistive technology devices (ATD) to address the individualized needs of persons
with disabilities. When we consider the availability of both specialized and everyday products, there is no need to have a one-size-fits-all view of ATD selection and service delivery. Yet, I fear that is where we are increasingly headed. In 2002 our world economies were healthier than they are today. Prosperous economies can afford to be generous and liberal with resources and less concerned with waste. But the global recession in 2008 created considerable belt-tightening and increased frugality. Some services were scaled-back, others cut altogether and there became a widespread need to be more efficient. Now it seems the twentieth century people-focused efforts and the twenty-first century person-focused efforts depicted in Figure 1 may be reversed. That is to say, we may be going back to more of a one-size fits all approach in the name of economizing. We bear some of the blame for this situation ourselves. When we could focus on the person and obtain evidence of successful ATD outcomes, we did not do so often enough. We certainly published case studies, and still do, and had good anecdotal evidence, but we could have done more pre–post studies. While not considered by many to be as rigorous as randomized controlled trials and well-matched comparison-group studies, and viewed as quasi-experimental, we know that how individuals compare data-wise is likely different from how they compare person-wise. Thus, pre–post study designs are powerful in demonstrating positive change in people over time, which is what we are truly all about. For 30 years we have used a 30% ATD non-use or abandonment rate. It is unlikely that the stability of this figure is due to the lack of product options. It is likely that it is a result of the means by which products are obtained, that is the assistive technology service delivery system
Statements made then and their accuracy now
20 13
Downloaded by [Chinese University of Hong Kong] at 07:07 06 November 2015
From people-centered to person-centered services, and back again
In the 2002 article, I made points that bear reviewing. Let us see how current some of them are: Then: Individuals with disabilities who are involved in the decision in a meaningful way will generally be more satisfied with services overall. Now: This is still very true and will remain so. However, consumer satisfaction is becoming unimportant to payers and others. They want to see functional improvement. This can include consumers’ subjective ratings of their performance of activities over time (see pre–post study design discussion above). Then: The perspective of the user will increasingly be the driving force in device selection, not which technology is most affordable or quickest to obtain.
2
M. J. Scherer
Disabil Rehabil Assist Technol, 2014; 9(1): 1–2
People-Focused Efforts N O W Person
Service Infrastructure Assistive Technology
Legislation & Policy
20st Century
Person-Focused Efforts
Downloaded by [Chinese University of Hong Kong] at 07:07 06 November 2015
Person Service Infrastructure Assistive Technology
Legislation & Policy
I T’ S R E V E R S E D
21st Century
Figure 1. Our changing emphasis from people to person and back to people.
Now: I am sorry to say that I believe this has largely reversed. Then: Many professionals, parents and consumers say they do not have the information or training they need to confidently evaluate technology options and select the most appropriate device. Now: This is accurate today. Then: Professionals require a means of determining consumer preferences and priorities and having these guide the AT selection. It is no longer acceptable to point to technological solutions before the prospective user’s goals are fully defined and the individual’s needs and preferences are apparent. A particular technology should never become the place to start; the needs, desires and goals of the user should be the beginning point. Now: This is accurate today and, in my opinion, more important than ever. Then: People will select their assistive technologies based, first, on how well they satisfy needs and preferences, then according to their attractiveness and appeal. If the device meets the person’s performance expectations and is easy and comfortable to use, then a good match of person and technology has been achieved. It is also crucial that users have a choice of options and that healthcare and rehabilitation professionals make them available since each individual will find that some of the available options are more productive and work better than others. By working together as a team, consumers and rehabilitation professionals can identify effective technologies that are also affordable. Now: This is accurate today and, hopefully, will always be current. Then: The field of AT is establishing its own service infrastructure. Now: Thankfully, this is current and accurate. While we always collaborated across borders, we have strengthened this over time. And we are doing this in the area of assistive technology service delivery. For example, the new European Union project ENTELIS has the goal of reducing the digital divide in ICT and ICT-AT for groups at risk of exclusion and
will focus on persons with any disability plus those of older age. There will be an exchange of good practices and the development of a stable network to address ICT and ICT-AT training to help in the development of a framework to grow towards a common strategy in Europe for the ICT-AT-based life-long learning of people with disabilities of all ages. Clearly gains have been made over the past nine years, but in many areas we have lost some ground. More of a focus on service delivery processes is needed. We also need to consider the fact that we provide consumers with much more than products. In addition to ATDs, we try to match them with the most appropriate community resources, personal assistance, strategies, service animals and so on, and the best blend of these. Perhaps a change in terminology would convey the vast array of supports we consider. One term proposed at the 12th Association for the Advancement of Assistive Technology in Europe (AAATE) conference in Portugal was assistive solution [3].
1984 and thirty years more: where are we headed? Not only have ATDs become more computerized and electronic, but so has the way we do business. Many Orwellian predictions have occurred! In addition to the emphasis on evidence-based medicine, we are seeing use of the electronic medical record become widespread. Coding, documentation and record-keeping requirements keep growing. Computerization has made data collection and transmission easy. At the same time, Human Subjects Review Boards have made it more difficult. More regulations will make us spend more time with data and record-keeping than with consumers. Thus, when I wrote in 2002 that we have moved from services based on the medical model to one focused on consumer social participation and empowerment, the reality today is that this trend, too, may be reversing. Disability and Rehabilitation: Assistive Technology will continue to feature articles that will serve as roadmaps for us as we navigate the future of our field. We aim to document what is working and why so that we may all gain from our colleagues’ experiences regardless of where they, and we, live and work. Original research articles, case studies, product and device descriptions, and review articles are all appropriate for this journal. We will also feature selected papers from key international conferences to add to their global reach. I look forward to your contributions to our mutual effort to enhance the research and practices in our field. Marcia J. Scherer, Ph.D., MPH, FACRM Editor, Disability and Rehabilitation: Assistive Technology President, Institute for Matching Person & Technology 486 Lake Road, Webster, NY 14580, USA E-mail: [email protected]
Declaration of interest No conflicts of interest
References 1. Scherer MJ. The change in emphasis from people to person: introduction to the special issue on Assistive Technology. Disabil Rehabil 2002;24:1–4. 2. AbleData: Your Source for Assistive Technology Information. Available from: www.AblaData.com. 3. Scherer M. (2013, November). Should we change ‘‘device’’ to ‘‘solution’’?, Friends of ATIA Newslett: Global Edition. Available from: http://www.atia.org/i4a/pages/index.cfm?pageid¼4495
