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Technology and the environment: supportive resource or barrier for people with developmental disabilities?
Nurs Clin N Am 38 (2003) 331–349
Technology and the environment: supportive resource or barrier for people with developmental disabilities? Joy Hammel, PhD, OTR/L, FAOTA Department of Occupational Therapy and Joint Doctoral Program in Disability Studies, University of Illinois at Chicago, Room 311, 1919 West Taylor Street, Chicago, IL 60612-7250, USA
Simple. I talk [referring to augmentative communication device]. I need it. When broke, I no talk. (Participant in the community using her augmentative communication device to answer a question about how she used technology [1].) He’s all over the place with his new chair [received a power wheelchair and new seating system]. Before that, he never left his room unless someone had the time to roll him over to another room. Now he’s whizzing down the hall and around the block. I can’t keep track of him sometimes. . . .One day, they were tearing up the sidewalk outside the house and he couldn’t use the new chair. It was like he was a different person again—dependent on people to move him everywhere. It’s kind of amazing to think about—with it he moves, without it he’s dependent on me. (Community staff member talking about the impact of technology on the life of a man with a developmental disability living in a community-based group home.) I think a lot of it [whether someone transitions to a community setting or not] has to do with two things: how disabled the person is and who’s fighting for them to get out. And, who’s there to help them once they get out Ôcause it’s not easy to stay in the community after that, especially when someone’s pretty disabled and needs a lot of support. It takes a lot of time and effort to get a placement in the community for someone who is pretty disabled, especially if they can’t toilet themselves. There’s long waiting lists for places and, by the time they come up for someone, they’re pretty set where they are or have lost
Preparation of this article was supported in part by the Rehabilitation Research and Training Center on Aging with Developmental Disability, Grant No. H133B980046 from the National Institute on Disability and Rehabilitation Research. E-mail address: [email protected] 0029-6465/03/$ - see front matter Ó 2003, Elsevier Inc. All rights reserved. doi:10.1016/S0029-6465(02)00053-1
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function and the place won’t accept them anymore. Still, if someone’s fighting for them or with them, that’ll help Ôcause the squeaky wheels gets the grease. The tech [technology] is great and I’ve seen it help people a lot no matter where they live, so I guess that’s good. But there’s a lot more to thinking about transitioning to the community than the tech. Without the right supports and the perfect timing, it’s a tough move to make, and easy to land up back in the nursing home if the supports aren’t there. (Case manager who works with people with developmental disabilities speaking about the transition from nursing homes and institutions to community living options.)
Our society has witnessed an exponential growth in information and the technologies to identify, access, and utilize this information. At the same time, separate assistive technologies (AT) have been developed to enable people with disabilities to access information and control their environment. Recently, the disability and technology design communities have questioned the concept of separate development; that is, the development of technology for persons with disabilities as distinctively different from design for the rest of society. Instead, they have advocated for universal design—design of products and environments for use by all people. Technologies, such as accessible Internet/World Wide Web interfaces, and age-friendly access-ready community environments have the potential to open additional doors to available information, personal control, and equitable participation for people with developmental disabilities. Such technologies and environments, whether assistive or universally designed, hold great promise for people with developmental disabilities who seek to live and participate in the community across the life span. These technologies, however, also carry a significant cost in relation to the financial resources needed to obtain them, the systems to implement them, and the social investment needed to support and sustain their use over time. Thus, technology has the potential to be a ‘‘bane’’ or a ‘‘boon’’ for people with disabilities and, in turn, for others in their everyday social worlds. As demonstrated by the quotations at the start of this article, assistive technology can make a significant difference in a person’s life. Unfortunately, whether that person gets access to needed technology in the first place or to what extent it is supported over time is closely connected to the social environment and the level of support it affords. The quotations also illustrate the key role nurses and other health care professionals play in this process as members of that social environment, including the power they may have in determining AT need relative to life decisions such as community living. This article examines the potential uses and benefits of technology and environmental interventions (EI) with people with developmental disabilities across the life span, significant barriers to obtaining and using them in everyday life, and the role that nurses and other health care and rehabilitation professionals play in influencing whether the potential of AT is realized as a supportive resource or as yet another barrier. Throughout the
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article, examples from prior research studies on technology and environmental impact will be used to illustrate the people, processes, and factors that influenced outcomes related to community living choice and control by people with developmental disabilities. What are assistive technology and environmental interventions? Assistive technology and environmental interventions (AT-EI) are available for use across the life span and across everyday contexts of living, including home, school, work, and community. AT refers to ‘‘any item, piece of equipment or product systems, whether acquired commercially off the shelf, modified, or customized, that is used to increase, maintain, or improve functional capabilities of individuals with disabilities’’ [2]. Changes or modifications in the environment (physical and social) go hand in hand with any technology. For example, modifying the environment by adding grab bars, accessible handles, a lift, or an ergonomically designed workstation are physical modifications. Teaching a family member or attendant how to set up technology or a work surface for easy access may be an intervention targeted at the person’s social environment. The combination of AT and environmental modifications is referred to as AT-EI. Frequently, changes in the environment alone, such as how an activity is set up or how a person is positioned to access it, can solve a functional issue without having to add more technology or equipment. Within the field of AT-EI, ‘‘integrated’’ solutions include those that put together several technologies and environmental adaptations with training for the consumer and important others so they can effectively set up, use, and problem solve the system on a day-to-day basis. For example, a person may use a system that integrates a wheelchair with a communication device and an environmental aid to daily living (EADL) to control appliances in the environment. The system may be controlled by one input (eg, a joystick) or allow the person to switch between multiple controls such as a joystick, a single switch, or their voice, depending on whether the person wants to use it to control a computer, move a wheelchair, or operate an EADL. An integrated system may need to be interfaced with respiratory equipment, a hospital bed, or other heavy duty or medical equipment that must have emergency back-up capabilities. Table 1 shows some of the categories of AT-EI that people with developmental disabilities may be using in conjunction with medical technology, as well as the needs that the technology may help to support. Conceptually, we often think about AT-EI in a limited way, such as a wheelchair in place of walking. AT-EI can be applied in many ways, however, to meet personal, therapeutic, social, and societal participation needs and goals. The Competence Environment Press Model [3] asserts that as people age and experience threats to their sense of competence, the environment either poses a significant press (or demand) on the person that can result in negative functional outcomes or it supports the person. Thus, the
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Table 1 Issues influencing function with potential AT-EI strategies Category
Issues
AT-EI
Functional mobility and positioning
Changes or difficulty with Strength Balance or coordination Endurance/energy Ability to handle objects Walking and moving around Posture: sitting, changing position Weight shifts and transfers Breathing Falls or fear of falling Pressure sore formation Perceptual motor changes
Seating and positioning technology Headrests, cushions, seat inserts, custom backs or seats Mobility technology Manual and power wheelchairs, walkers, canes, crutches, scooters Daily living equipment Utensils, dressing/feeding aides, reachers, transfer boards Adapted recreation equipment Adapted transportation technology
Functional communication
Changes in social interactions or behaviors Isolation or withdrawal Difficulty with receptive/ expressive language Change in living situation or caregivers who don’t understand communication strategies
Augmentative and alternative communication Communication books, systems, and computer-based devices Access and control technologies
Environmental modifications universal design
Changes in mobility, cognition, or perception relating to one’s self in space and ability to navigate environment Inability to access entries, rooms, or activities within spaces Fear of falling or falls Visual, hearing, perceptual, or motor changes
Grab bars, handrails, lighting, flooring Safety monitors and devices Intercoms, pagers, cell phones, and emergency communication system EADLs to control appliances Physical modifications
Learning and cognitive technology
Learning new tasks Organizing and sequencing Memory Social interaction
Cognitive/learning technology Educational software/hardware Hand-held organizers/cognitive assists/organizers Computer-aided instruction Job aides
Orthotics and prosthetics
Changes in body from disease or injury Changes in control, strength, and posture
Splints Casts Braces and supports
Functional access and control
Fine motor skills: grasping, holding, opening, writing, picking things up
Adapted equipment for everyday use Access technologies (different types of input devices)
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Table 1 (continued) Category
Issues
AT-EI
Control of appliances and switches Vision changes: unable to see clearly, difficulty seeing up close, need for more light, difficulty seeing in the dark, changes in color perception, loss of peripheral vision, age-related diseases Hearing changes: loss of sensitivity to sound, loss of ability to hear certain pitches Touch: decreased sensitivity to touch, pain, pressure, and temperature
Vision aids magnifiers, screen enlargers or readers, environmental markers, room/ task lighting, tactile cues, voice input and output systems, braille/large print devices Hearing devices: assistive listening devices (amplifiers), alerting devices (vibrating), hearing aides, telecommunication devices (teletypewriters) Environmental adaptations: monitoring systems and sensors
Abbreviations: AT-EI, assistive technology and environmental interventions; EADLs, environmental aids to daily living.
environment can be seen as the primary agent of change to enable or maintain competence and to increase flexibility and adaptability in responding to future issues. Technology, the physical environment, and the social environment all can be viewed as tools to either support or hinder activity and participation in context for people aging with developmental disabilities. The Ecology of Human Performance [4] offers strategies for analyzing the fit between the person and the contexts in which they operate. AT-EI can be incorporated as an environmental support to serve multiple purposes. AT-EI may be used for the following activities: Establish or restore function Rehabilitative technologies such as splints and orthotics, mobility, seating, and positioning equipment, and software for learning, organizing, and problem solving are often used on a short-term basis to learn new or improve existing functional skills. An EADL is a device that enables people to control appliances in their environments (lamp, TV, emergency call system) by way of a choice of strategies including touch of finger, voice, or activating a switch by way of the chin, head, or flick of an eyebrow. An EADL may be used with a young child who is learning new skills, after a surgery, or when a person begins to lose functional movement to help the person gain control over the environment, even if the person may not choose to use it long-term. A person may also use a mobility device such as a walker or power wheelchair for a short time to enable them to experience the freedom and control of movement and, by way of that movement, begin to
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work on many skills at the same time, including vision, perception, judgment, reaction time, problem solving, and belief in self. New telerehabilitation technologies enable a health care professional to interact with a person remotely to create health and medication management programs or to address changes in status, to consult on home living conditions, and to see how someone is doing an activity in their natural context—all of which may contribute to function, health, and quality of life. Adapt the context or the activity demands Many technologies or basic environmental modifications can make activities easier, less fatiguing physically or cognitively, more accessible or comfortable, and less time consuming or frustrating. Basic aid-to-daily-living equipment such as reachers, tub benches, typing aids, adapted utensils, and adjustable stands and holders can change a task from inaccessible to accessible. Adaptations to medical equipment such as adapted devices or methods for giving insulin or monitoring health status can give a person a sense of control over their medical management. Mobility devices including canes, walkers, and wheelchairs can help to address issues of fatigue, falls, and limited or reduced movement, coordination, or balance. Computer access devices such as alternative mice, trackballs, headpointing systems, voice recognition and feedback systems, and adapted user interfaces to the Internet offer a way to change the activity demands so the person can access a computer or other information technology. Adding grab bars, railings, large print or picture displays, contrasting colors, talking appliances, and task lighting are all environmental elements that can be easily adapted to change an environment from inaccessible, overwhelming, or unmotivating to accessible and usable. Emergency call systems, pagers, accessible phones, intercoms, security systems, and sensors to turn on lights or detect temperature or unsafe conditions may help a person live in the community or feel secure when they are alone. Alter the context to enable function Function may be enabled by changing a context to improve support to a person, such as moving from an institution or hospital to the community. It may also involve moving from a setting where physical access is a barrier to one that has been universally designed; that is, built to accommodate the person’s needs as he or she ages. For example, moving to or creating a place with a barrier-free entrance (eg, without steps or with an accessible lift or ramp), wide doorways that can accommodate a walker or wheelchair at any time, and lever handles that can be easily operated by a closed fist may significantly affect a person’s mental and physical health and quality of life. Completely changing a way of doing things may also enable function, such as considering the transition from walking to using a mobility device or
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wheelchair. Transitions or changes like these are major events for people, and can be disorienting or even threatening if the social and psychologic components are not considered and respected. Health care professionals can collaborate with consumers and important others on how to make informed decisions about such changes and major life transitions and ensure they have access to specialized information and services to meet their needs. Prevent issues and loss Seating and positioning technologies can help prevent, delay, or lessen the severity of respiratory conditions, postural issues or long-term contractures, pressure sores, and other medical conditions that influence health and function. Ergonomically designed work and activity spaces and equipment such as adjustable chairs and focused lighting can help prevent repetitive strain injuries, pressure, vision problems, back and neck pain, and psychologic anxiety and strain that can come with sitting in the same position for extended periods of time. Gaining control over the environment through devices like a TV remote, an adapted computer, an accessible phone, or a communication strategy can reduce a person’s frustration and, in turn, may reduce behaviors that have been mislabeled as ‘‘maladaptive.’’ Such strategies may also help to prevent social isolation and loss of valued roles and participation in life. Working with a person and significant others to set up a bathroom or bedroom environment so that they can complete their routines of getting up and going to bed, manage physical assistance and health needs more effectively, and make tasks easier for everyone involved may significantly improve quality of life and decrease loss of activities. Create new opportunities Health care professionals can be critical players in creating contexts that do not presume dependence and impairment at the individual level but instead promote the right to access and to participate in that environment by anyone. For example, health care professionals can help case managers and administrators see that access to AT-EI to live in the ‘‘most integrated setting’’ is a right for all people with disabilities, including people who want to move out of the nursing home to the community. The role of the professional then can be to help identify the resources needed to make this transition and to justify why they are ‘‘reasonable’’ when compared with institutional placement. The design of universally accessible products, living situations that turn a physical space into a ‘‘home’’ that has meaning, and communities that enable people to interact, network, and engage in activities and roles of choice at whatever level desired opens use to many people. Helping people in a shared living space, school, or community site to design an accessible bathroom, entry ways, and ways to move through the building can affect many people’s lives over a long time. The move toward
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access-ready and age-friendly communities goes beyond individual AT to the design of entire communities and services within them to accommodate any citizen. This includes access to and ease of use of doctor’s offices, health facilities, and community recreational and fitness centers by people with disabilities, as well as access to telecommunications and information technology such as the Web. The design of new cognitive technologies such as adaptations to hand-held personal digital assistants that can serve as job aids or cognitive assists and new interfaces to the Web that are picture-based or accommodate cognitive and learning issues open the door to a world of information and social networking and health management. Benefits of AT-EI Research has shown many benefits of and justifications for integrating AT-EI as a supportive resource across the life span. AT-EI has been shown to have a supportive role for people with developmental disabilities in maintaining or improving function in basic and instrumental activities of daily living [5], particularly in the areas of functional mobility. A longitudinal study of 35 people with developmental disabilities including cerebral palsy and intellectual disability ages 30 years and older showed that a later-life functional assessment followed by AT delivery resulted in maintained or improved function on items in the Functional Independence Measure such as mobility, bathing, eating, dressing, transferring, and grooming/hygiene [5]. A second study of 109 people with developmental disabilities who were attempting to move out of nursing homes to community settings demonstrated that people were more likely to (1) maintain or improve function when rated with the AT than without and (2) to sustain that affect over time as they aged [1]. The AT-EI also had a supportive influence on participation in tasks beyond basic activities of daily living, including activities of community living (eg, shopping, community mobility), social, and leisure. Although there was a beneficial impact, AT-EI potential was greatly underutilized within the social, leisure, and community participation arenas, and was cited as a need by consumers and important others in their lives. AT-EI has been found to support people in the community and those who stayed in or returned to nursing homes, including people with cognitive and physical disabilities [1]. Although AT-EI had an effect in either setting, qualitatively, social support for AT-EI use was found to be better in the community, particularly in single-family or small (four or less) shared living situations where the philosophy of consumer empowerment and control was stronger. In particular, this study pointed to the significant influence of significant others in the person’s social world, such as family, caregivers, and staff in influencing whether AT-EI was even considered or if it was set up and supported for use throughout the day or not, as demonstrated in this quotation from staff in a nursing home [1]:
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Whatever makes it easier, mostly for us Ôcause we’re the ones getting him up and out of bed every day. If it’s hard to set up or takes a lot of time, chances are that’s the stuff that won’t be used too much or gets put in a closet and never comes out again. It’s just too much of a hassle to do, and with all the staff changeover, it gets lost in the shuffle a lot.
Even the addition of very low technical simple devices such as an accessible remote control for the TV or a remote pager were shown to have a significant impact on people’s lives, in that it enabled them to have a sense of control. Significant others began to see this increased sense of control and changed their judgments about the person and their capabilities. In turn, they then sought other technologies or environmental strategies to increase the person’s control, even if only at small incremental levels, changes that would not be detected by assessments like the Functional Independence Measure. Thus, the focus was on control, not necessarily large functional gains. AT-EI can also support communication (ergo social participation) for people with developmental disabilities across the life span [6]. Having an opportunity to communicate, whether it is spoken, signed, by way of a communication device, or by some other method is a key access issue and a right. The study described earlier by Hammel et al [1] found that judgments about a person’s competence and ability to manage their own lives was influenced by a person’s communication ability and, in turn, these judgments influenced whether important others supported the use of communication strategies or technology. If a person’s link to communication was through a device or technology and the judgment had already been made that the person wouldn’t benefit functionally from the AT, then that communication technology was less likely to be consistently set up or the person supported in its use throughout the day. How do you express your ideas when other people have deemed that you are not capable of doing so before you have even had a chance? How do you let someone know that you are in pain, not feeling well, or do not want to do something if your tool for doing so is not consistently set up to let you do so? These points exemplify how AT-EI can quickly become a frustration rather than a support when significant others in the person’s social environment do not see its need or support its use. In addition to communication technology, other types of AT-EI also influence social participation. A study by McEwen [7] found that changing basic positioning (sidelying with a wedge support versus free form versus wheelchair) influenced social and communication patterns of students with profound multiple disabilities. Findings indicated that adults communicated more with these students when they were in wheelchairs; however, the students communicated more with peers when in free form on a mat. The study presents intriguing implications for the influence of the environment on important social relationship building. It also points to the issue that what professionals perceive as the ‘‘perfect position’’ for
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medical reasons may be negatively influencing peer interaction or engagement in the social world, again causing barriers rather than building supports. The right to AT-EI The right to AT-EI as a supportive tool for community living, full participation in life activities, and meaningful work is mandated within several key pieces of legislation—all of which have resulted from grass roots activism by the disability community. Thinking about AT-EI access as a right and not as a service for which one qualifies is critical because it puts the focus on people with developmental disabilities and their right to be treated with the same level of respect, dignity, and access to resources afforded any other citizen, rather than placing them in the sick or patient role. Knowing this legislation and sharing this information with consumers helps the consumer and the professional to advocate for needed AT-EI and qualified services to deliver it. Key legislation includes the following: The Developmental Disabilities Assistance and Bill of Rights Act of 2000 (PL 106-402) The Developmental Disabilities Assistance and Bill of Rights Act of 2000 [8] asserts the rights of people with developmental disabilities and their families to community services, individualized supports, and other forms of assistance that promote self-determination, independence, productivity, and integration and inclusion in all facets of community life including AT (see the Administration on Developmental Disabilities for additional information at: http://www.acf.dhhs.gov/programs/add/DD-ACT2.htm). The Assistive Technology Act (PL 105-394) In 1998, the Assistive Technology Act [2] authorized the development of state information and technical assistance programs for individuals with disabilities of all ages, referred to as Technical Assistance Projects throughout the country (a list of state programs can be found at: http://www.resna.org/taproject/index.html). Title III authorized the creation of state alternative financing programs to offer more financing options to people with disabilities (information and state programs are available at: http://www.resna.org/AFTAP/state/index.html). The Rehabilitation Act (PL 99-506) and Amendments The Rehabilitation Act (1973) and amendments (1998) [9] banned discrimination against any individual on the sole basis of handicap in federal employment or in any organization that has contracts with the government. The act also mandated access to public government facilities and
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accommodation provisions including AT-EI. The act mandates the provision of these services and AT when written into an approved Individualized Plan for Employment. Amendments to Sect. 508 in 1998 mandated access to electronic and information technology including accessible Web and telecommunication standards (see http://www.doi.gov/atc/s508.html for more information). The Americans with Disabilities Act of 1990 (PL 101-336) The Americans with Disabilities Act of 1990 [10] is the first comprehensive civil rights legislation for people with disabilities. Included within Title I (Employment) of the law is Section 102 on reasonable accommodations, considered as any reasonable modification or adjustment to a job, an employment practice, or work environment so that an employee or qualified applicant with a disability can work. Title II (Public Services) and Title III (Public Accommodation and Services Operated by Private Entities) present rights to access public and private entities including buildings and transportation. Title V mandates that telecommunications relay services including telecommunications relay devices and services for the deaf be provided on a 24-hour basis at no extra charge to the employee (more information on the Americans with Disabilities Act can be found at http:// janweb.icdi.wvu.edu/kinder/index.htm). The Individuals with Disabilities Education Act (IDEA) (PL 105-17) In 1998, A/index.html). IDEA [11] mandated the provision of a free and appropriate education in the least restrictive environment for children with disabilities, including the right to technology and technology services. Within the amended law, children who receive related services should be screened for technology need (more information can be found at http://www.ed.gov/offices/OSERS/ Policy/IDE). Another important area of rights related to people with developmental disabilities was set in the US Supreme Court decision, Olmstead v L.C. [12], in which the right to live ‘‘in the most integrated setting appropriate to the needs of qualified individuals with disabilities’’ was supported. This included the right to live in a community-based setting with reasonable supports including AT and personal assistance. This case brought to the forefront the issue that people had a right to community living options and supports even when the accommodations may not be equal to or lower in cost than institutional care. Many other related pieces of legislation aim to ensure access to AT-EI across the life span. The Rehabilitation Engineering and Assistive Technology Society of North America (RESNA) is an interdisciplinary organization that has more information about AT-EI and related legislation (see http://www.resna.org/). As an organization, RESNA
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offers an AT credentialing program for professionals who have specialized expertise in AT service delivery and it has a database of these specialists in each state on-line for referrals. Funding of AT-EI Along with legislation and rights policies, an understanding of funding sources for AT-EI is critical for nurses and other healthcare professionals and consumers alike because they represent the primary strategies for obtaining AT-EI. Funding for AT has been identified as one of the primary barriers to AT use [13–15]; therefore, health care professionals can play a role in informing consumers about funding options and strategies to advocate within funding systems, including how to appeal decisions when funding is denied. Table 2 shows some of the most frequently used sources of funding along with key terminology to use in requests, given the priorities of each source. In addition, two other sources of funding are important to note for use by people with developmental disabilities. First, there are Home and Community-Based Waiver programs (1915 (c) or (b)) in each state that enable states to provide community-based living options to nursing homes or institutions for people with disabilities, a strategy that is being proposed to meet Olmstead decision implications. These waiver programs can be used by people with developmental disabilities to provide specialized services and resources to live in the community, including AT assessments and equipment and minor home modifications. Another new source of potential funding is the Alternative Financing Programs. In 2000, the National Institute of Disability and Rehabilitation Research began a federal match program to enable states to develop consumer-based programs that offered alternative financing options to consumers to purchase needed AT-EI, including options such as guaranteed and low-interest loans. These programs operate like financial institutions, with consumers in control of the application, AT choice, and payment process, unlike third-party reimbursement systems. RESNA houses the Alternative Financing Technical Assistance Project from which participating state programs can be found (http://www.resna.org/). The issues and barriers to AT-EI access and use Although AT-EI has many benefits, there are also many studies demonstrating barriers to its use and the high abandonment that occurs with it [16,17]. Surveys of people with intellectual disabilities show that only a small percentage use AT-EI [18,19], despite reports that they and their caregivers express many AT-EI needs, particularly in the areas of functional communication, mobility, and independent living/environmental control [18]; a large percentage was not using a can opener (44%), toaster (38%),
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Table 2 Commonly used sources for assistive technology funding across the lifespan [27] Reimbursement source Medicare
General description Part B of Medicare, Title XVIII of the Social Security Act, provides for durable medical equipment, defined as equipment that can withstand repeated use, is primarily and customarily used to serve a medical purpose, and generally is not useful to a person in the absence of illness or injury.
Successful phrases in assistive technology funding Medically necessary Reasonable and necessary Durable medical equipment Prosthetic device
Medicaid, Title XIX of the Social Security Medicaid and Act, is a combined federal-state private medical insurance program that provides health care to people below a specified level of income and persons who are medically indigent. States have latitude in determining the definition of ‘‘medically indigent.’’ Each state has its own funding guidelines for technology and services. Private insurance coverage differs across and within plans but tends to follow Medicaid and Medicare guidelines.
Achieving self-support to prevent, reduce, or eliminate dependency Self-sufficiency Preserving, rehabilitating or reuniting families Health related Prosthetic appliance Physician-prescribed equipment Part of the client’s medical treatment plan Restoration of the patient to his or her best functional level
Vocational rehabilitation services
Vocational rehabilitation, contacted through the state, provides funds for high school seniors, adults, and school dropouts. Assistive technology must be essential for the individual to becoming employable after training and must be written into the Individualized Transition Plan (done as early as age 14 years) and/or the Individualized Plan for Employment. The person must quality for state vocational rehabilitation services.
Services and training are used to enhance the employability of person with a disability Vocational potential Promoting independent living Vocationally enabling
Individuals with Disabilities Education Act
Any public school receiving federal assistance must provide any child with disabilities a free and appropriate public education in a least restrictive environment with an Individualized Educational Program. With the reauthorization, the school team must screen for technology needs with any child receiving related services.
Educationally relevant Needed in order to receive a free and appropriate public education Utilized a facilitate a child’s education in the least restrictive environment Related services
Adapted from Hammel J. Assistive technology and practice. Bethesda, MD: American Occupational and Therapy Association; 2000; with permission.
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VCR (34%), radio/stereo (28%), or television (18%), even though these devices can be adapted relatively easily at a low cost. A range of AT-EI are available to help with low vision or vision loss, including magnifiers, enlarged type, high-contrast printing or color use, nonglare lighting on wall or floor surfaces, talking devices, closed-circuit TVs, scanners to convert text to electronic or speech formats, and many more. Despite availability, consideration of AT-EI to address vision impairments or loss other than eyeglasses is low for people with developmental disabilities [18]. Although hearing aids are frequently used among adults with developmental disabilities, they often are not tolerated or used routinely because of maintenance issues, setup, and aesthetics [20]. Other ways to accommodate hearing loss, including amplifiers, vibrating devices, devices or environmental strategies to reduce background noise, microphones to focus incoming sounds, and visual cues and signage are rarely considered with this population. These results suggest that service providers are not screening for underlying sensory issues including health management that could be influencing everyday activity or that they do not have information on how to address them. In fact, both vision and hearing issues may go undiagnosed and instead be observed as behavioral issues such as ‘‘acting out’’ or withdrawing from engagement [1]. Such issues may also result in not taking the right medication at the right time because information on how to do so was not seen or heard. Health care professionals can be critical players in linking consumers with specialized medical and AT-EI services in these areas to address sensory issues. Surveys also support the need for long-term AT-EI training and support across functional and community participation activities targeted at consumers and caregivers [18,19]. Benz and Kenmann [21] found that of a sample of 262 people with mental retardation, 92% expressed a desire to engage in educational activities to keep learning new things. This learning can be related to the ability to live in the community and prevent or delay dependent-care placements. Many of these educational activities could involve information technology use such as the computer and Internet. Adults with developmental disabilities, however, report very limited computer use and a large unmet need (48%–79%) for such technology across educational, community living, and socialization activities [18,19]. Computers are frequently used within early intervention and school programs, yet are rarely considered for health and wellness outside the school or with people who are aging with developmental disabilities and the important people in their lives who support them. Health care professionals can link consumers to information Web sites and to access specialists who can help them find ways to get on-line. In addition to need, we also know that once received, AT-EI is abandoned by people with disabilities at rates from 20% to 50%, depending on the situation and type of technology issued [16,17]. Common reasons cited for abandonment include (1) the technology did not do what it was
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intended to do or did not match the person’s needs, (2) the consumer and important others’ input was overlooked during the AT delivery process, (3) a change in needs occurred that the solution did not accommodate, and (4) the AT was broken and needed repair. Specific to people with intellectual disabilities, the technology may be too difficult to use or to customize, the interface may not be user friendly or accessible, the technology may be unfamiliar, threatening, or not aesthetically pleasing to the consumer or significant others, or the technology may not be supported by significant others who are critical to setting it up and encouraging its use throughout the day [26]. One study found that if the technology did not have a functional value and it was not easy for the consumer to see how it could be used in everyday life, then it was more likely to be abandoned [22]. Research has repeatedly shown that when important others who are in key positions to influence or support the individual with a disability are not involved, AT-EI is likely to be (1) underutilized, (2) only used in one setting or with certain people and not others, or (3) put away or lost, never to be used again [1,16,22,26]. The implication here is not to deny needed AT based on significant-other support but rather to involve these individuals in the process of selecting it, demonstrating how to set it up and use it, and showing that it is valuable to the consumer. One of the most effective ways to do this is to develop a network of AT users to whom you can link consumers and significant others. These individuals can act as role models and mentors, strategizing ways to troubleshoot and use the AT to its fullest potential. Such a network offers a long-term support system rather than a one-time training. Summary Findings from needs assessments and abandonment studies point to issues with health care providers, particularly in their ability to listen to the needs of the consumer and important others regarding AT-EI. Professionals need to listen to what people are telling them or, in many cases, what they are not telling them. Actions and nonverbal messages can speak very loudly. Strategies to communicate and collaborate with consumers need to be developed. Regardless of ability to communicate or the severity of the impairments the person may be experiencing, it is important to withhold judgments that may underestimate a person’s potential or desire to be in control of life decisions. AT-EI service providers have often seen people labeled with severe or profound intellectual disabilities challenge that diagnosis after accessing a communication or access system. Likewise, a person with a severe disability has the right to supportive resources and to the same level of respect, dignity, and quality of life as any other member of society. Using the technology and adapting the environment to provide opportunities for consumers to ‘‘voice’’ their wishes and control their lives can be an effective strategy to collaborate.
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When focusing on a rights-based philosophy, recognizing the difference between physical independence (eg, physical and/or cognitive ability to do a task by oneself) and self-care management (eg, access to and power to manage the supportive resources to live in the community regardless of level of physical ability) is important. We all rely on supports in our lives, whether it be tools or technology to help us do a job or another person, yet when we evaluate people with disabilities, the expectation is for people to function independently [23,24]. They even receive lower scores on functional assessments if they are using a piece of technology to do an activity. By shifting the focus to management of and access to resources versus level of physical dependence or burden, health care professionals can play a role in linking people to such resources as AT-EI and related services and strategies to support community living. Such a shift in focus also enables professionals to validate interdependence; that is, the give-take relationships that people have with each other to support each other [25]. The use of AT-EI by people with developmental disabilities often involves an interdependent relationship in which another person may help set up the environment or technology and, in turn, the consumer can then reciprocate and engage in an activity or a relationship [1]. Health care professionals also need to better understand and take into consideration the social context, its influence on consumers’ use or nonuse of AT-EI, and the long-term influence on community living and participation decisions [1]. Nurses can involve important others in the process by listening to and considering their needs, and ensuring that they are informed about options, the benefits of using AT-EI for the consumer and themselves, and how to set up and troubleshoot the AT-EI. In cases where important others are not supportive, health care professionals may be in a position to link the consumer with other consumers and advocacy groups such as Centers for Independent Living or Self Advocates Becoming Empowered that may offer that support as well as membership in a collective community engaged in systems change. Health care professionals can serve as a system interface by linking people to information and resources to make informed decisions [26]. Resources on developmental disability and health, common issues that may occur, and life course planning help people identify functional issues and early signs of accelerated aging and proactively use the environment and technology to stay in living situations of choice. Few health care professionals are well prepared to provide services to people with developmental disabilities as they age; a great need exists for providers of such specialized services and for proactive later-life screenings that can identify issues early and make the most use of AT-EI strategies to address aging issues [26,28]. At any given point in time in the life of people with developmental disabilities, many different professionals and systems may be involved in decisions that could include AT-EI. Medical, educational, vocational,
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independent living, and case management systems may all be working with the person; however, there is often limited or no communication between them, particularly as the person ages or transitions between settings. Health care professionals, even when they are working with an individual on a limited basis, can and should take on active roles in linking consumers and important others with other systems and should ensure that information about their AT-EI needs is transferred accurately between systems. Most likely, nurses may be in a role to refer a person to specialized services, whether they may be medical, rehabilitative, AT-EI–specific, or disability advocacy groups that can help support the person as they face barriers or seek out AT. Nurses may also be in a role to pass on important information about the person’s health and medical status that can help to better inform AT-EI decisions to ensure the AT meets the person’s needs across contexts. As an interface, nurses may assume a role as a supporting advocate for accessing resources, not as a gatekeeper who makes decisions for people. This includes referring individuals with developmental disabilities to people and groups that know how to get AT-EI, how to fund it, and how to troubleshoot it, and linking them to other people with disabilities who are sharing strategies in person and on-line. It also includes focusing beyond basic selfcare and considers AT-EI strategies that enable a person to participate in high meaning activities and roles in the home and the community. Participation in activities identified as highly meaningful and important to the person, such as participating in a religious community, networking with other people on-line, gardening, or being a member of a community group, to name a few, can positively contribute to health, wellness, and quality of life; the challenge is to create and adapt the environment (social, physical, and societal) to support participation choices and control.
Acknowledgments The author would like to acknowledge all of the people with developmental disabilities and important others in their lives who shared their experiences with AT and their suggestions for improving the delivery system across many research projects. Special thanks to Tamar Heller, Lisa Brown, Glenn Hedman, and the team at the University of Illinois at Chicago Assistive Technology Unit for their participation, and to Beth Marks and Joan Earle Hahn for their support in writing this article.
References [1] Hammel J, Lai J, Heller T. The impact of assistive technology and environmental interventions on function and living situation status for people who are aging with developmental disabilities. Disabil Rehabil 2002;24(1–3):93–105. [2] The Assistive Technology Act: PL 105–394. Washington DC: Congressional Report; 1998.
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[3] Lawton MP. Competence, environmental press and the adaptation of older people. In: Powell Lawton M, Windley PG, Byerts TO, editors. Aging and the environment. New York: Springer; 1982. [4] Dunn W, Brown C, McGuigan A. The ecology of human performance: a framework for considering the effect of context. Am J Occup Ther 1994;48(7):595–607. [5] Hammel J, Heller T, Ying G. Outcomes of assistive technology services and use by adults with developmental disabilities. Proceedings of the Rehabilitation Engineering and Assistive Technology Society of North America. Minneapolis, MN; 1998. [6] Light JC, Binger C. Building communicative competence with individuals who use augmentative and alternative communication. Baltimore, MD: Paul H. Brookes; 1998. [7] McEwen I. Assistive positioning as a control parameter of social-communicative interactions between students with profound multiple disabilities and classroom staff. Phys Ther 1992;72(9):634–47. [8] Developmental Disabilities Assistance and Bill of Rights Act of 2000: PL 106–402. Washington, DC: Congressional Report; 2000. [9] The Rehabilitation Act: PL 99–506. Washington, DC: Congressional Report; 1973 (Amendments 1998). [10] The Americans with Disabilities Act of 1990: PL 101–336. Washington, DC: Congressional Report; 1990. [11] Individuals with Disabilities Education Act: PL 105–17. Washington, DC: Congressional Report; 1998. [12] Olmstead v L.C., 98 SCt 536 (1999). [13] LaPlante M, Hendershot G, Moss A. Assistive technology devices and home accessibility features: prevalence, payment, need and trends. Advance data: number 217. Washington, DC: National Center for Health Statistics, Centers for Disease Control; 1992. [14] National Council on Disability. Federal policy barriers to assistive technology. Washington DC: Author; 2000. [15] Seelman K. Blueprint for the millennium: an analysis of regional hearings on assistive technology for people with disabilities. Washington, DC: US Department of Education, NIDRR; 1998. [16] Gitlin L. Why older people accept or reject assistive technology. Generations 1995;Spring: 41–6. [17] Philips B, Zhao H. Predictors of assistive technology abandonment. Assist Technol 1993;5: 36–45. [18] Wehmeyer M. National survey of the use of assistive technology by adults with mental retardation. Ment Retard 1998;36(1):44–51. [19] Parette H, Vanbiervliet A. Tentative findings of a study of the technology needs and use patterns of persons with mental retardation. J Intellect Disabil Res 1992;36:7–27. [20] Connolly BH. General effects of aging on persons with developmental disabilities. Top Geriatr Rehabil 1998;13(3):1–18. [21] Benz M, Kennann K. Educational experiences, needs, and interests of older adults with mental retardation. Educ Gerontol 1988;14:509–23. [22] Nochajski S, Tomita M, Mann W. The use and satisfaction with assistive devices by older persons with cognitive impairments: a pilot intervention study. Top Geriatr Rehabil 1996;12(2):40–53. [23] French S. What’s so great about independence? In: Swain J, Finkelstein V, French S, Oliver M, editors. Disabling barriers—enabling environments. Thousand Oaks, CA: Sage; 1993. [24] Morris J. Independent lives: community care and disabled people. Basingstoke, Great Britain: Macmillan Press; 1993. [25] Reindal S. Independence, dependence, interdependence: some reflections on the subject and personal autonomy. Disabil Soc 1999;14(3):353–67.
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[26] Hammel J. Assistive technology and environmental intervention (AT-EI) impact on activity and life roles of aging adults with developmental disabilities: findings and implications for practice. J Occup Phys Ther Geriatr 2000;18(1):37–58. [27] Hammel J. Assistive technology and practice. Bethesda, MD: American Occupational and Therapy Association; 2000. [28] Heller T. Supporting adults with intellectual disabilities and their families in planning and advocacy: a literature review. Phys Occup Ther Geriatr 2000;18(1):59–74.
Technology and the environment: supportive resource or barrier for people with developmental disabilities? Joy Hammel, PhD, OTR/L, FAOTA Department of Occupational Therapy and Joint Doctoral Program in Disability Studies, University of Illinois at Chicago, Room 311, 1919 West Taylor Street, Chicago, IL 60612-7250, USA
Simple. I talk [referring to augmentative communication device]. I need it. When broke, I no talk. (Participant in the community using her augmentative communication device to answer a question about how she used technology [1].) He’s all over the place with his new chair [received a power wheelchair and new seating system]. Before that, he never left his room unless someone had the time to roll him over to another room. Now he’s whizzing down the hall and around the block. I can’t keep track of him sometimes. . . .One day, they were tearing up the sidewalk outside the house and he couldn’t use the new chair. It was like he was a different person again—dependent on people to move him everywhere. It’s kind of amazing to think about—with it he moves, without it he’s dependent on me. (Community staff member talking about the impact of technology on the life of a man with a developmental disability living in a community-based group home.) I think a lot of it [whether someone transitions to a community setting or not] has to do with two things: how disabled the person is and who’s fighting for them to get out. And, who’s there to help them once they get out Ôcause it’s not easy to stay in the community after that, especially when someone’s pretty disabled and needs a lot of support. It takes a lot of time and effort to get a placement in the community for someone who is pretty disabled, especially if they can’t toilet themselves. There’s long waiting lists for places and, by the time they come up for someone, they’re pretty set where they are or have lost
Preparation of this article was supported in part by the Rehabilitation Research and Training Center on Aging with Developmental Disability, Grant No. H133B980046 from the National Institute on Disability and Rehabilitation Research. E-mail address: [email protected] 0029-6465/03/$ - see front matter Ó 2003, Elsevier Inc. All rights reserved. doi:10.1016/S0029-6465(02)00053-1
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function and the place won’t accept them anymore. Still, if someone’s fighting for them or with them, that’ll help Ôcause the squeaky wheels gets the grease. The tech [technology] is great and I’ve seen it help people a lot no matter where they live, so I guess that’s good. But there’s a lot more to thinking about transitioning to the community than the tech. Without the right supports and the perfect timing, it’s a tough move to make, and easy to land up back in the nursing home if the supports aren’t there. (Case manager who works with people with developmental disabilities speaking about the transition from nursing homes and institutions to community living options.)
Our society has witnessed an exponential growth in information and the technologies to identify, access, and utilize this information. At the same time, separate assistive technologies (AT) have been developed to enable people with disabilities to access information and control their environment. Recently, the disability and technology design communities have questioned the concept of separate development; that is, the development of technology for persons with disabilities as distinctively different from design for the rest of society. Instead, they have advocated for universal design—design of products and environments for use by all people. Technologies, such as accessible Internet/World Wide Web interfaces, and age-friendly access-ready community environments have the potential to open additional doors to available information, personal control, and equitable participation for people with developmental disabilities. Such technologies and environments, whether assistive or universally designed, hold great promise for people with developmental disabilities who seek to live and participate in the community across the life span. These technologies, however, also carry a significant cost in relation to the financial resources needed to obtain them, the systems to implement them, and the social investment needed to support and sustain their use over time. Thus, technology has the potential to be a ‘‘bane’’ or a ‘‘boon’’ for people with disabilities and, in turn, for others in their everyday social worlds. As demonstrated by the quotations at the start of this article, assistive technology can make a significant difference in a person’s life. Unfortunately, whether that person gets access to needed technology in the first place or to what extent it is supported over time is closely connected to the social environment and the level of support it affords. The quotations also illustrate the key role nurses and other health care professionals play in this process as members of that social environment, including the power they may have in determining AT need relative to life decisions such as community living. This article examines the potential uses and benefits of technology and environmental interventions (EI) with people with developmental disabilities across the life span, significant barriers to obtaining and using them in everyday life, and the role that nurses and other health care and rehabilitation professionals play in influencing whether the potential of AT is realized as a supportive resource or as yet another barrier. Throughout the
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article, examples from prior research studies on technology and environmental impact will be used to illustrate the people, processes, and factors that influenced outcomes related to community living choice and control by people with developmental disabilities. What are assistive technology and environmental interventions? Assistive technology and environmental interventions (AT-EI) are available for use across the life span and across everyday contexts of living, including home, school, work, and community. AT refers to ‘‘any item, piece of equipment or product systems, whether acquired commercially off the shelf, modified, or customized, that is used to increase, maintain, or improve functional capabilities of individuals with disabilities’’ [2]. Changes or modifications in the environment (physical and social) go hand in hand with any technology. For example, modifying the environment by adding grab bars, accessible handles, a lift, or an ergonomically designed workstation are physical modifications. Teaching a family member or attendant how to set up technology or a work surface for easy access may be an intervention targeted at the person’s social environment. The combination of AT and environmental modifications is referred to as AT-EI. Frequently, changes in the environment alone, such as how an activity is set up or how a person is positioned to access it, can solve a functional issue without having to add more technology or equipment. Within the field of AT-EI, ‘‘integrated’’ solutions include those that put together several technologies and environmental adaptations with training for the consumer and important others so they can effectively set up, use, and problem solve the system on a day-to-day basis. For example, a person may use a system that integrates a wheelchair with a communication device and an environmental aid to daily living (EADL) to control appliances in the environment. The system may be controlled by one input (eg, a joystick) or allow the person to switch between multiple controls such as a joystick, a single switch, or their voice, depending on whether the person wants to use it to control a computer, move a wheelchair, or operate an EADL. An integrated system may need to be interfaced with respiratory equipment, a hospital bed, or other heavy duty or medical equipment that must have emergency back-up capabilities. Table 1 shows some of the categories of AT-EI that people with developmental disabilities may be using in conjunction with medical technology, as well as the needs that the technology may help to support. Conceptually, we often think about AT-EI in a limited way, such as a wheelchair in place of walking. AT-EI can be applied in many ways, however, to meet personal, therapeutic, social, and societal participation needs and goals. The Competence Environment Press Model [3] asserts that as people age and experience threats to their sense of competence, the environment either poses a significant press (or demand) on the person that can result in negative functional outcomes or it supports the person. Thus, the
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Table 1 Issues influencing function with potential AT-EI strategies Category
Issues
AT-EI
Functional mobility and positioning
Changes or difficulty with Strength Balance or coordination Endurance/energy Ability to handle objects Walking and moving around Posture: sitting, changing position Weight shifts and transfers Breathing Falls or fear of falling Pressure sore formation Perceptual motor changes
Seating and positioning technology Headrests, cushions, seat inserts, custom backs or seats Mobility technology Manual and power wheelchairs, walkers, canes, crutches, scooters Daily living equipment Utensils, dressing/feeding aides, reachers, transfer boards Adapted recreation equipment Adapted transportation technology
Functional communication
Changes in social interactions or behaviors Isolation or withdrawal Difficulty with receptive/ expressive language Change in living situation or caregivers who don’t understand communication strategies
Augmentative and alternative communication Communication books, systems, and computer-based devices Access and control technologies
Environmental modifications universal design
Changes in mobility, cognition, or perception relating to one’s self in space and ability to navigate environment Inability to access entries, rooms, or activities within spaces Fear of falling or falls Visual, hearing, perceptual, or motor changes
Grab bars, handrails, lighting, flooring Safety monitors and devices Intercoms, pagers, cell phones, and emergency communication system EADLs to control appliances Physical modifications
Learning and cognitive technology
Learning new tasks Organizing and sequencing Memory Social interaction
Cognitive/learning technology Educational software/hardware Hand-held organizers/cognitive assists/organizers Computer-aided instruction Job aides
Orthotics and prosthetics
Changes in body from disease or injury Changes in control, strength, and posture
Splints Casts Braces and supports
Functional access and control
Fine motor skills: grasping, holding, opening, writing, picking things up
Adapted equipment for everyday use Access technologies (different types of input devices)
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Table 1 (continued) Category
Issues
AT-EI
Control of appliances and switches Vision changes: unable to see clearly, difficulty seeing up close, need for more light, difficulty seeing in the dark, changes in color perception, loss of peripheral vision, age-related diseases Hearing changes: loss of sensitivity to sound, loss of ability to hear certain pitches Touch: decreased sensitivity to touch, pain, pressure, and temperature
Vision aids magnifiers, screen enlargers or readers, environmental markers, room/ task lighting, tactile cues, voice input and output systems, braille/large print devices Hearing devices: assistive listening devices (amplifiers), alerting devices (vibrating), hearing aides, telecommunication devices (teletypewriters) Environmental adaptations: monitoring systems and sensors
Abbreviations: AT-EI, assistive technology and environmental interventions; EADLs, environmental aids to daily living.
environment can be seen as the primary agent of change to enable or maintain competence and to increase flexibility and adaptability in responding to future issues. Technology, the physical environment, and the social environment all can be viewed as tools to either support or hinder activity and participation in context for people aging with developmental disabilities. The Ecology of Human Performance [4] offers strategies for analyzing the fit between the person and the contexts in which they operate. AT-EI can be incorporated as an environmental support to serve multiple purposes. AT-EI may be used for the following activities: Establish or restore function Rehabilitative technologies such as splints and orthotics, mobility, seating, and positioning equipment, and software for learning, organizing, and problem solving are often used on a short-term basis to learn new or improve existing functional skills. An EADL is a device that enables people to control appliances in their environments (lamp, TV, emergency call system) by way of a choice of strategies including touch of finger, voice, or activating a switch by way of the chin, head, or flick of an eyebrow. An EADL may be used with a young child who is learning new skills, after a surgery, or when a person begins to lose functional movement to help the person gain control over the environment, even if the person may not choose to use it long-term. A person may also use a mobility device such as a walker or power wheelchair for a short time to enable them to experience the freedom and control of movement and, by way of that movement, begin to
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work on many skills at the same time, including vision, perception, judgment, reaction time, problem solving, and belief in self. New telerehabilitation technologies enable a health care professional to interact with a person remotely to create health and medication management programs or to address changes in status, to consult on home living conditions, and to see how someone is doing an activity in their natural context—all of which may contribute to function, health, and quality of life. Adapt the context or the activity demands Many technologies or basic environmental modifications can make activities easier, less fatiguing physically or cognitively, more accessible or comfortable, and less time consuming or frustrating. Basic aid-to-daily-living equipment such as reachers, tub benches, typing aids, adapted utensils, and adjustable stands and holders can change a task from inaccessible to accessible. Adaptations to medical equipment such as adapted devices or methods for giving insulin or monitoring health status can give a person a sense of control over their medical management. Mobility devices including canes, walkers, and wheelchairs can help to address issues of fatigue, falls, and limited or reduced movement, coordination, or balance. Computer access devices such as alternative mice, trackballs, headpointing systems, voice recognition and feedback systems, and adapted user interfaces to the Internet offer a way to change the activity demands so the person can access a computer or other information technology. Adding grab bars, railings, large print or picture displays, contrasting colors, talking appliances, and task lighting are all environmental elements that can be easily adapted to change an environment from inaccessible, overwhelming, or unmotivating to accessible and usable. Emergency call systems, pagers, accessible phones, intercoms, security systems, and sensors to turn on lights or detect temperature or unsafe conditions may help a person live in the community or feel secure when they are alone. Alter the context to enable function Function may be enabled by changing a context to improve support to a person, such as moving from an institution or hospital to the community. It may also involve moving from a setting where physical access is a barrier to one that has been universally designed; that is, built to accommodate the person’s needs as he or she ages. For example, moving to or creating a place with a barrier-free entrance (eg, without steps or with an accessible lift or ramp), wide doorways that can accommodate a walker or wheelchair at any time, and lever handles that can be easily operated by a closed fist may significantly affect a person’s mental and physical health and quality of life. Completely changing a way of doing things may also enable function, such as considering the transition from walking to using a mobility device or
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wheelchair. Transitions or changes like these are major events for people, and can be disorienting or even threatening if the social and psychologic components are not considered and respected. Health care professionals can collaborate with consumers and important others on how to make informed decisions about such changes and major life transitions and ensure they have access to specialized information and services to meet their needs. Prevent issues and loss Seating and positioning technologies can help prevent, delay, or lessen the severity of respiratory conditions, postural issues or long-term contractures, pressure sores, and other medical conditions that influence health and function. Ergonomically designed work and activity spaces and equipment such as adjustable chairs and focused lighting can help prevent repetitive strain injuries, pressure, vision problems, back and neck pain, and psychologic anxiety and strain that can come with sitting in the same position for extended periods of time. Gaining control over the environment through devices like a TV remote, an adapted computer, an accessible phone, or a communication strategy can reduce a person’s frustration and, in turn, may reduce behaviors that have been mislabeled as ‘‘maladaptive.’’ Such strategies may also help to prevent social isolation and loss of valued roles and participation in life. Working with a person and significant others to set up a bathroom or bedroom environment so that they can complete their routines of getting up and going to bed, manage physical assistance and health needs more effectively, and make tasks easier for everyone involved may significantly improve quality of life and decrease loss of activities. Create new opportunities Health care professionals can be critical players in creating contexts that do not presume dependence and impairment at the individual level but instead promote the right to access and to participate in that environment by anyone. For example, health care professionals can help case managers and administrators see that access to AT-EI to live in the ‘‘most integrated setting’’ is a right for all people with disabilities, including people who want to move out of the nursing home to the community. The role of the professional then can be to help identify the resources needed to make this transition and to justify why they are ‘‘reasonable’’ when compared with institutional placement. The design of universally accessible products, living situations that turn a physical space into a ‘‘home’’ that has meaning, and communities that enable people to interact, network, and engage in activities and roles of choice at whatever level desired opens use to many people. Helping people in a shared living space, school, or community site to design an accessible bathroom, entry ways, and ways to move through the building can affect many people’s lives over a long time. The move toward
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access-ready and age-friendly communities goes beyond individual AT to the design of entire communities and services within them to accommodate any citizen. This includes access to and ease of use of doctor’s offices, health facilities, and community recreational and fitness centers by people with disabilities, as well as access to telecommunications and information technology such as the Web. The design of new cognitive technologies such as adaptations to hand-held personal digital assistants that can serve as job aids or cognitive assists and new interfaces to the Web that are picture-based or accommodate cognitive and learning issues open the door to a world of information and social networking and health management. Benefits of AT-EI Research has shown many benefits of and justifications for integrating AT-EI as a supportive resource across the life span. AT-EI has been shown to have a supportive role for people with developmental disabilities in maintaining or improving function in basic and instrumental activities of daily living [5], particularly in the areas of functional mobility. A longitudinal study of 35 people with developmental disabilities including cerebral palsy and intellectual disability ages 30 years and older showed that a later-life functional assessment followed by AT delivery resulted in maintained or improved function on items in the Functional Independence Measure such as mobility, bathing, eating, dressing, transferring, and grooming/hygiene [5]. A second study of 109 people with developmental disabilities who were attempting to move out of nursing homes to community settings demonstrated that people were more likely to (1) maintain or improve function when rated with the AT than without and (2) to sustain that affect over time as they aged [1]. The AT-EI also had a supportive influence on participation in tasks beyond basic activities of daily living, including activities of community living (eg, shopping, community mobility), social, and leisure. Although there was a beneficial impact, AT-EI potential was greatly underutilized within the social, leisure, and community participation arenas, and was cited as a need by consumers and important others in their lives. AT-EI has been found to support people in the community and those who stayed in or returned to nursing homes, including people with cognitive and physical disabilities [1]. Although AT-EI had an effect in either setting, qualitatively, social support for AT-EI use was found to be better in the community, particularly in single-family or small (four or less) shared living situations where the philosophy of consumer empowerment and control was stronger. In particular, this study pointed to the significant influence of significant others in the person’s social world, such as family, caregivers, and staff in influencing whether AT-EI was even considered or if it was set up and supported for use throughout the day or not, as demonstrated in this quotation from staff in a nursing home [1]:
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Whatever makes it easier, mostly for us Ôcause we’re the ones getting him up and out of bed every day. If it’s hard to set up or takes a lot of time, chances are that’s the stuff that won’t be used too much or gets put in a closet and never comes out again. It’s just too much of a hassle to do, and with all the staff changeover, it gets lost in the shuffle a lot.
Even the addition of very low technical simple devices such as an accessible remote control for the TV or a remote pager were shown to have a significant impact on people’s lives, in that it enabled them to have a sense of control. Significant others began to see this increased sense of control and changed their judgments about the person and their capabilities. In turn, they then sought other technologies or environmental strategies to increase the person’s control, even if only at small incremental levels, changes that would not be detected by assessments like the Functional Independence Measure. Thus, the focus was on control, not necessarily large functional gains. AT-EI can also support communication (ergo social participation) for people with developmental disabilities across the life span [6]. Having an opportunity to communicate, whether it is spoken, signed, by way of a communication device, or by some other method is a key access issue and a right. The study described earlier by Hammel et al [1] found that judgments about a person’s competence and ability to manage their own lives was influenced by a person’s communication ability and, in turn, these judgments influenced whether important others supported the use of communication strategies or technology. If a person’s link to communication was through a device or technology and the judgment had already been made that the person wouldn’t benefit functionally from the AT, then that communication technology was less likely to be consistently set up or the person supported in its use throughout the day. How do you express your ideas when other people have deemed that you are not capable of doing so before you have even had a chance? How do you let someone know that you are in pain, not feeling well, or do not want to do something if your tool for doing so is not consistently set up to let you do so? These points exemplify how AT-EI can quickly become a frustration rather than a support when significant others in the person’s social environment do not see its need or support its use. In addition to communication technology, other types of AT-EI also influence social participation. A study by McEwen [7] found that changing basic positioning (sidelying with a wedge support versus free form versus wheelchair) influenced social and communication patterns of students with profound multiple disabilities. Findings indicated that adults communicated more with these students when they were in wheelchairs; however, the students communicated more with peers when in free form on a mat. The study presents intriguing implications for the influence of the environment on important social relationship building. It also points to the issue that what professionals perceive as the ‘‘perfect position’’ for
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medical reasons may be negatively influencing peer interaction or engagement in the social world, again causing barriers rather than building supports. The right to AT-EI The right to AT-EI as a supportive tool for community living, full participation in life activities, and meaningful work is mandated within several key pieces of legislation—all of which have resulted from grass roots activism by the disability community. Thinking about AT-EI access as a right and not as a service for which one qualifies is critical because it puts the focus on people with developmental disabilities and their right to be treated with the same level of respect, dignity, and access to resources afforded any other citizen, rather than placing them in the sick or patient role. Knowing this legislation and sharing this information with consumers helps the consumer and the professional to advocate for needed AT-EI and qualified services to deliver it. Key legislation includes the following: The Developmental Disabilities Assistance and Bill of Rights Act of 2000 (PL 106-402) The Developmental Disabilities Assistance and Bill of Rights Act of 2000 [8] asserts the rights of people with developmental disabilities and their families to community services, individualized supports, and other forms of assistance that promote self-determination, independence, productivity, and integration and inclusion in all facets of community life including AT (see the Administration on Developmental Disabilities for additional information at: http://www.acf.dhhs.gov/programs/add/DD-ACT2.htm). The Assistive Technology Act (PL 105-394) In 1998, the Assistive Technology Act [2] authorized the development of state information and technical assistance programs for individuals with disabilities of all ages, referred to as Technical Assistance Projects throughout the country (a list of state programs can be found at: http://www.resna.org/taproject/index.html). Title III authorized the creation of state alternative financing programs to offer more financing options to people with disabilities (information and state programs are available at: http://www.resna.org/AFTAP/state/index.html). The Rehabilitation Act (PL 99-506) and Amendments The Rehabilitation Act (1973) and amendments (1998) [9] banned discrimination against any individual on the sole basis of handicap in federal employment or in any organization that has contracts with the government. The act also mandated access to public government facilities and
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accommodation provisions including AT-EI. The act mandates the provision of these services and AT when written into an approved Individualized Plan for Employment. Amendments to Sect. 508 in 1998 mandated access to electronic and information technology including accessible Web and telecommunication standards (see http://www.doi.gov/atc/s508.html for more information). The Americans with Disabilities Act of 1990 (PL 101-336) The Americans with Disabilities Act of 1990 [10] is the first comprehensive civil rights legislation for people with disabilities. Included within Title I (Employment) of the law is Section 102 on reasonable accommodations, considered as any reasonable modification or adjustment to a job, an employment practice, or work environment so that an employee or qualified applicant with a disability can work. Title II (Public Services) and Title III (Public Accommodation and Services Operated by Private Entities) present rights to access public and private entities including buildings and transportation. Title V mandates that telecommunications relay services including telecommunications relay devices and services for the deaf be provided on a 24-hour basis at no extra charge to the employee (more information on the Americans with Disabilities Act can be found at http:// janweb.icdi.wvu.edu/kinder/index.htm). The Individuals with Disabilities Education Act (IDEA) (PL 105-17) In 1998, A/index.html). IDEA [11] mandated the provision of a free and appropriate education in the least restrictive environment for children with disabilities, including the right to technology and technology services. Within the amended law, children who receive related services should be screened for technology need (more information can be found at http://www.ed.gov/offices/OSERS/ Policy/IDE). Another important area of rights related to people with developmental disabilities was set in the US Supreme Court decision, Olmstead v L.C. [12], in which the right to live ‘‘in the most integrated setting appropriate to the needs of qualified individuals with disabilities’’ was supported. This included the right to live in a community-based setting with reasonable supports including AT and personal assistance. This case brought to the forefront the issue that people had a right to community living options and supports even when the accommodations may not be equal to or lower in cost than institutional care. Many other related pieces of legislation aim to ensure access to AT-EI across the life span. The Rehabilitation Engineering and Assistive Technology Society of North America (RESNA) is an interdisciplinary organization that has more information about AT-EI and related legislation (see http://www.resna.org/). As an organization, RESNA
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offers an AT credentialing program for professionals who have specialized expertise in AT service delivery and it has a database of these specialists in each state on-line for referrals. Funding of AT-EI Along with legislation and rights policies, an understanding of funding sources for AT-EI is critical for nurses and other healthcare professionals and consumers alike because they represent the primary strategies for obtaining AT-EI. Funding for AT has been identified as one of the primary barriers to AT use [13–15]; therefore, health care professionals can play a role in informing consumers about funding options and strategies to advocate within funding systems, including how to appeal decisions when funding is denied. Table 2 shows some of the most frequently used sources of funding along with key terminology to use in requests, given the priorities of each source. In addition, two other sources of funding are important to note for use by people with developmental disabilities. First, there are Home and Community-Based Waiver programs (1915 (c) or (b)) in each state that enable states to provide community-based living options to nursing homes or institutions for people with disabilities, a strategy that is being proposed to meet Olmstead decision implications. These waiver programs can be used by people with developmental disabilities to provide specialized services and resources to live in the community, including AT assessments and equipment and minor home modifications. Another new source of potential funding is the Alternative Financing Programs. In 2000, the National Institute of Disability and Rehabilitation Research began a federal match program to enable states to develop consumer-based programs that offered alternative financing options to consumers to purchase needed AT-EI, including options such as guaranteed and low-interest loans. These programs operate like financial institutions, with consumers in control of the application, AT choice, and payment process, unlike third-party reimbursement systems. RESNA houses the Alternative Financing Technical Assistance Project from which participating state programs can be found (http://www.resna.org/). The issues and barriers to AT-EI access and use Although AT-EI has many benefits, there are also many studies demonstrating barriers to its use and the high abandonment that occurs with it [16,17]. Surveys of people with intellectual disabilities show that only a small percentage use AT-EI [18,19], despite reports that they and their caregivers express many AT-EI needs, particularly in the areas of functional communication, mobility, and independent living/environmental control [18]; a large percentage was not using a can opener (44%), toaster (38%),
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Table 2 Commonly used sources for assistive technology funding across the lifespan [27] Reimbursement source Medicare
General description Part B of Medicare, Title XVIII of the Social Security Act, provides for durable medical equipment, defined as equipment that can withstand repeated use, is primarily and customarily used to serve a medical purpose, and generally is not useful to a person in the absence of illness or injury.
Successful phrases in assistive technology funding Medically necessary Reasonable and necessary Durable medical equipment Prosthetic device
Medicaid, Title XIX of the Social Security Medicaid and Act, is a combined federal-state private medical insurance program that provides health care to people below a specified level of income and persons who are medically indigent. States have latitude in determining the definition of ‘‘medically indigent.’’ Each state has its own funding guidelines for technology and services. Private insurance coverage differs across and within plans but tends to follow Medicaid and Medicare guidelines.
Achieving self-support to prevent, reduce, or eliminate dependency Self-sufficiency Preserving, rehabilitating or reuniting families Health related Prosthetic appliance Physician-prescribed equipment Part of the client’s medical treatment plan Restoration of the patient to his or her best functional level
Vocational rehabilitation services
Vocational rehabilitation, contacted through the state, provides funds for high school seniors, adults, and school dropouts. Assistive technology must be essential for the individual to becoming employable after training and must be written into the Individualized Transition Plan (done as early as age 14 years) and/or the Individualized Plan for Employment. The person must quality for state vocational rehabilitation services.
Services and training are used to enhance the employability of person with a disability Vocational potential Promoting independent living Vocationally enabling
Individuals with Disabilities Education Act
Any public school receiving federal assistance must provide any child with disabilities a free and appropriate public education in a least restrictive environment with an Individualized Educational Program. With the reauthorization, the school team must screen for technology needs with any child receiving related services.
Educationally relevant Needed in order to receive a free and appropriate public education Utilized a facilitate a child’s education in the least restrictive environment Related services
Adapted from Hammel J. Assistive technology and practice. Bethesda, MD: American Occupational and Therapy Association; 2000; with permission.
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VCR (34%), radio/stereo (28%), or television (18%), even though these devices can be adapted relatively easily at a low cost. A range of AT-EI are available to help with low vision or vision loss, including magnifiers, enlarged type, high-contrast printing or color use, nonglare lighting on wall or floor surfaces, talking devices, closed-circuit TVs, scanners to convert text to electronic or speech formats, and many more. Despite availability, consideration of AT-EI to address vision impairments or loss other than eyeglasses is low for people with developmental disabilities [18]. Although hearing aids are frequently used among adults with developmental disabilities, they often are not tolerated or used routinely because of maintenance issues, setup, and aesthetics [20]. Other ways to accommodate hearing loss, including amplifiers, vibrating devices, devices or environmental strategies to reduce background noise, microphones to focus incoming sounds, and visual cues and signage are rarely considered with this population. These results suggest that service providers are not screening for underlying sensory issues including health management that could be influencing everyday activity or that they do not have information on how to address them. In fact, both vision and hearing issues may go undiagnosed and instead be observed as behavioral issues such as ‘‘acting out’’ or withdrawing from engagement [1]. Such issues may also result in not taking the right medication at the right time because information on how to do so was not seen or heard. Health care professionals can be critical players in linking consumers with specialized medical and AT-EI services in these areas to address sensory issues. Surveys also support the need for long-term AT-EI training and support across functional and community participation activities targeted at consumers and caregivers [18,19]. Benz and Kenmann [21] found that of a sample of 262 people with mental retardation, 92% expressed a desire to engage in educational activities to keep learning new things. This learning can be related to the ability to live in the community and prevent or delay dependent-care placements. Many of these educational activities could involve information technology use such as the computer and Internet. Adults with developmental disabilities, however, report very limited computer use and a large unmet need (48%–79%) for such technology across educational, community living, and socialization activities [18,19]. Computers are frequently used within early intervention and school programs, yet are rarely considered for health and wellness outside the school or with people who are aging with developmental disabilities and the important people in their lives who support them. Health care professionals can link consumers to information Web sites and to access specialists who can help them find ways to get on-line. In addition to need, we also know that once received, AT-EI is abandoned by people with disabilities at rates from 20% to 50%, depending on the situation and type of technology issued [16,17]. Common reasons cited for abandonment include (1) the technology did not do what it was
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intended to do or did not match the person’s needs, (2) the consumer and important others’ input was overlooked during the AT delivery process, (3) a change in needs occurred that the solution did not accommodate, and (4) the AT was broken and needed repair. Specific to people with intellectual disabilities, the technology may be too difficult to use or to customize, the interface may not be user friendly or accessible, the technology may be unfamiliar, threatening, or not aesthetically pleasing to the consumer or significant others, or the technology may not be supported by significant others who are critical to setting it up and encouraging its use throughout the day [26]. One study found that if the technology did not have a functional value and it was not easy for the consumer to see how it could be used in everyday life, then it was more likely to be abandoned [22]. Research has repeatedly shown that when important others who are in key positions to influence or support the individual with a disability are not involved, AT-EI is likely to be (1) underutilized, (2) only used in one setting or with certain people and not others, or (3) put away or lost, never to be used again [1,16,22,26]. The implication here is not to deny needed AT based on significant-other support but rather to involve these individuals in the process of selecting it, demonstrating how to set it up and use it, and showing that it is valuable to the consumer. One of the most effective ways to do this is to develop a network of AT users to whom you can link consumers and significant others. These individuals can act as role models and mentors, strategizing ways to troubleshoot and use the AT to its fullest potential. Such a network offers a long-term support system rather than a one-time training. Summary Findings from needs assessments and abandonment studies point to issues with health care providers, particularly in their ability to listen to the needs of the consumer and important others regarding AT-EI. Professionals need to listen to what people are telling them or, in many cases, what they are not telling them. Actions and nonverbal messages can speak very loudly. Strategies to communicate and collaborate with consumers need to be developed. Regardless of ability to communicate or the severity of the impairments the person may be experiencing, it is important to withhold judgments that may underestimate a person’s potential or desire to be in control of life decisions. AT-EI service providers have often seen people labeled with severe or profound intellectual disabilities challenge that diagnosis after accessing a communication or access system. Likewise, a person with a severe disability has the right to supportive resources and to the same level of respect, dignity, and quality of life as any other member of society. Using the technology and adapting the environment to provide opportunities for consumers to ‘‘voice’’ their wishes and control their lives can be an effective strategy to collaborate.
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When focusing on a rights-based philosophy, recognizing the difference between physical independence (eg, physical and/or cognitive ability to do a task by oneself) and self-care management (eg, access to and power to manage the supportive resources to live in the community regardless of level of physical ability) is important. We all rely on supports in our lives, whether it be tools or technology to help us do a job or another person, yet when we evaluate people with disabilities, the expectation is for people to function independently [23,24]. They even receive lower scores on functional assessments if they are using a piece of technology to do an activity. By shifting the focus to management of and access to resources versus level of physical dependence or burden, health care professionals can play a role in linking people to such resources as AT-EI and related services and strategies to support community living. Such a shift in focus also enables professionals to validate interdependence; that is, the give-take relationships that people have with each other to support each other [25]. The use of AT-EI by people with developmental disabilities often involves an interdependent relationship in which another person may help set up the environment or technology and, in turn, the consumer can then reciprocate and engage in an activity or a relationship [1]. Health care professionals also need to better understand and take into consideration the social context, its influence on consumers’ use or nonuse of AT-EI, and the long-term influence on community living and participation decisions [1]. Nurses can involve important others in the process by listening to and considering their needs, and ensuring that they are informed about options, the benefits of using AT-EI for the consumer and themselves, and how to set up and troubleshoot the AT-EI. In cases where important others are not supportive, health care professionals may be in a position to link the consumer with other consumers and advocacy groups such as Centers for Independent Living or Self Advocates Becoming Empowered that may offer that support as well as membership in a collective community engaged in systems change. Health care professionals can serve as a system interface by linking people to information and resources to make informed decisions [26]. Resources on developmental disability and health, common issues that may occur, and life course planning help people identify functional issues and early signs of accelerated aging and proactively use the environment and technology to stay in living situations of choice. Few health care professionals are well prepared to provide services to people with developmental disabilities as they age; a great need exists for providers of such specialized services and for proactive later-life screenings that can identify issues early and make the most use of AT-EI strategies to address aging issues [26,28]. At any given point in time in the life of people with developmental disabilities, many different professionals and systems may be involved in decisions that could include AT-EI. Medical, educational, vocational,
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independent living, and case management systems may all be working with the person; however, there is often limited or no communication between them, particularly as the person ages or transitions between settings. Health care professionals, even when they are working with an individual on a limited basis, can and should take on active roles in linking consumers and important others with other systems and should ensure that information about their AT-EI needs is transferred accurately between systems. Most likely, nurses may be in a role to refer a person to specialized services, whether they may be medical, rehabilitative, AT-EI–specific, or disability advocacy groups that can help support the person as they face barriers or seek out AT. Nurses may also be in a role to pass on important information about the person’s health and medical status that can help to better inform AT-EI decisions to ensure the AT meets the person’s needs across contexts. As an interface, nurses may assume a role as a supporting advocate for accessing resources, not as a gatekeeper who makes decisions for people. This includes referring individuals with developmental disabilities to people and groups that know how to get AT-EI, how to fund it, and how to troubleshoot it, and linking them to other people with disabilities who are sharing strategies in person and on-line. It also includes focusing beyond basic selfcare and considers AT-EI strategies that enable a person to participate in high meaning activities and roles in the home and the community. Participation in activities identified as highly meaningful and important to the person, such as participating in a religious community, networking with other people on-line, gardening, or being a member of a community group, to name a few, can positively contribute to health, wellness, and quality of life; the challenge is to create and adapt the environment (social, physical, and societal) to support participation choices and control.
Acknowledgments The author would like to acknowledge all of the people with developmental disabilities and important others in their lives who shared their experiences with AT and their suggestions for improving the delivery system across many research projects. Special thanks to Tamar Heller, Lisa Brown, Glenn Hedman, and the team at the University of Illinois at Chicago Assistive Technology Unit for their participation, and to Beth Marks and Joan Earle Hahn for their support in writing this article.
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