White House/VA Conference
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“Last year, manufacturers integrated a motorized elbow, wrist, and hand for the first time and announced a new type of motorized hand sophisticated enough to pick up a single piece of paper.”—Margaret Giannini, MD |
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It’s really a pleasure for me to speak to you this afternoon, especially so because so many of my old colleagues are here and also because of some new colleagues whom I have met at this forum. I also bring you very warm greetings from Secretary Tommy Thompson. As health care professionals and bioengineers and others in the 21 st century, we are witnessing advances in medicine, rehabilitation, research, development, and technology that would have seemed miraculous to our forebears in health care. We live in an age in which telehealth is no longer a dream of the future,
but a reality of the present; in which smart houses enable aging people
and those with disabilities to live in the comfort of their own homes
surrounded by friends and family; an age in which it is not only possible
for disabled people to enter the workforce, but in which the federal
government, by law, must make the accommodations necessary to facilitate
disabled employees to achieve their full potential. |
Dr. Giannini was appointed Director of the Health and Human Services Office on Disability by Secretary Tommy Thompson on October 1, 2002. She serves as advisor to the Secretary on HHS activities relating to disabilities. Prior to that, she was appointed by President George W. Bush as the Principal Deputy Assistant Secretary for Aging at HHS. From 1981-1992, Dr. Giannini was Deputy Assistant Chief Medical Director for Rehabilitation and Prosthetics at the Department of Veteran Affairs. There her work focused on technology transfer and assistive technology involving all disabilities. In 1979, President Jimmy Carter appointed her as the first Director of the National Institute of Handicapped Research. In 1950, Dr. Giannini created the largest facility for the mentally retarded and the developmentally disabled of all ages and etiologies in the world. This facility became the first University Center of Excellence on Developmental Disabilities. |
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Moreover, we live in an age in which we are reaching out as far as we can, spanning the globe, to form common bonds with other governments to safeguard public health, to prevent disease, and to improve the health and well-being of people with disabilities. In this new age, we have joined hands across agencies and across the globe to support the World Health Organization (WHO) and such accomplishments as the International Classification of Functioning Disability and Health, recognizing that health is about human functioning. We live in an age in which the emphasis has changed from focusing on a person’s illness to focusing instead on the person’s ability to function. We live in an age, ladies and gentlemen, in which we are not only charged with enhancing the capacity of people with disabilities to live full lives as individuals and members of society, but with ensuring this civil right is a priority for President Bush and his administration. We live in an age of promise. This panel will focus on many aspects of emerging technologies to promote opportunities for people with disabilities. I am here to tell you, as a physician who has devoted my entire professional life to disabilities, that the emerging technologies we will speak about today are trailblazing, reflecting human genius at its best. What we talk about today will determine how people with disabilities live long after we are gone. In my three years of concentrating on the New Freedom Initiative at HHS, from listening to people with disabilities, their families, and their caregivers, to working across all federal agencies and where there are many constituents, we’ve learned that not just nationwide but worldwide health care professionals need to look at disabilities across the lifespan. This means children, adolescents, middle-aged people, seniors and aging people. We recognize that each have special needs that must be addressed. Additionally, we need to concentrate on the health of people with disabilities. Recognizing that in order to ensure full community integration throughout someone’s lifespan his health must be addressed. Therefore, we are working to optimize the health and well-being of people with disabilities to prevent or reduce the occurrence of a secondary comorbid condition. We are also seeing that today’s consumer is very demanding, and rightly so. Powered wheelchairs are certainly not a luxury item, but something disabled people need. When these individuals find themselves in need of some of the most remarkable technologies of our time, as health care professionals, we must ensure that they have access to these devices and that they are affordable. Otherwise, all the research and technology that we talk about today, and all of our combined work, will be for naught. Mobility limitations make up the largest area of disability in the American population. Ambulation, as you well know, is presently being restored through the use of orthoses, leg prostheses—which are improving every day—internal joint replacements, new surgical procedures, special shoe configurations, special canes, crutches, you know them all. One of my favorites is functional electrical stimulation ( FES), which you will hear more about later. In the last decade, the engineering advancements made by human joint replacements, especially hip and knee replacements, have improved ambulation and reduced unbearable pain for many with arthritic joint conditions. Prosthetics and orthotics have benefited from biomechanics, biomaterials, engineering, and bioelectronics. Users have told us that they need more attention to the fit of a socket with the residual limb. As you know, if the socket doesn’t fit properly, the prosthesis really doesn’t work well. Some government-funded research projects in this area include computer-aided design and computer-aided manufacture of sockets for prosthetic limbs. I am very pleased to tell you that the first center of this kind was created in Seattle when I was in the Department of Veteran Affairs (VA), under the leadership of Dr. Ernie Burgess. With this type of technology, we have intelligent knees with computer chips programmed to respond to changes in walking speed, rotary hydraulic prosthetic knee mechanisms to provide stance stability while walking, and ultrasound 3-D imaging of residual limbs for better fitting of the socket. The revolutionary computer-aided C-Leg® is a new prosthetic with onboard sensors and microprocessors that allow it to adapt to each individual’s movements. The sensors and microprocessors measure the speed and change of the knee angles, and direct the hydraulics to adjust the amount of resistance. And because the knee stiffens or loosens automatically, walking feels natural and takes less concentration. Sensors in the shin measure how much weight force is on the foot, and the carbon fiber dynamic response foot provides for energy return and comfort. Technological responses to motion limitations range from surgical interventions to prosthetic and orthotic devices to robotic devices. Tendon transfer surgery is proving successful everyday in boosting manipulation ability, and has also been successful in conjunction with implantable electrical stimulation systems for hand grasp and release in adolescents with tetraplegia secondary to spinal cord injuries. Emerging technologies are addressing this need and focusing on lightweight orthoses, FES applications, and myoelectric arms that can receive instructions from the brain by way of electrodes that detect electronic impulses shooting through the undamaged muscles. Last year, manufacturers integrated a motorized elbow, wrist, and hand for the first time and announced a new type of motorized hand sophisticated enough to pick up a single piece of paper. Technologies under further development include, for example, electromechanical arm interfaces, compact and flexible arms, and robots customized for individual needs. New technologies are emerging every day. Still, we need to address the physical disabilities and the specific populations across the lifespan to ensure we fill gaps that might exist as a person transitions from one life stage to another. I would like for a moment to focus on emerging technologies with respect to children, youth, young adults, and seniors. Children present their own set of needs, and the emerging technologies are those that can improve the lives of children with orthopedic disabilities. Research is focusing on three of the most important life activities of children: manipulation, mobility, and play/recreation. Rehabilitation Engineering Research Centers (RECs), funded by the National Institute on Disability and Rehabilitation Research (NIDRR) and the VA, address the manipulation needs of children with upper-limb deficiencies, current fitting practices for children’s prosthetics, and developing improved elbows and presensors for young children. In addition, emerging technologies are attending to the unique needs of children with cerebral palsy, spina bifida, spinal cord injury, muscle disease, and other chronic conditions that affect the child’s ability to ambulate. RECs are developing lightweight orthopedic components and evaluating the effectiveness of FES to correct gait abnormalities in children with cerebral palsy. Special attention to bilateral high-level arm amputees and growing children is important as their needs and assistive technology requirements are unique. A prosthetic hand for children that uses a new mechanical geometry and can add cable-actuation function and a power module as the child matures shows great promise. In addition, we know that the vast majority of Americans, but especially youth with disabilities, are not engaging in the recommended amount of physical activity that is so important for health benefits and increased quality of life through social interaction in fitness activities. Much research is going on to address those issues with the secondary conditions to prevent diabetes, obesity, cardiovascular disease, and musculoskeletal limitations. In my office we created an initiative, “I Can Do It, You Can Do It,” which addresses physical fitness for young children with disabilities. The program features adults who will mentor children and it’s the first of its kind nationwide where every disabled child who wishes to be in the physical fitness program will be able to participate. Programs like this are of paramount importance for integrating children with disabilities into society. The president delivered on his promise to increase and sustain funding for individuals with disabilities in education, including the Individual Development Accounts (which were expanded to allow disabled students to purchase assistive technology through the accounts). We know that mobility impairments can affect children in several ways. Some students may take longer to get from one class to another, to enter buildings, or to maneuver in small places. A mobility impairment may affect, to varying degrees, a student’s ability to manipulate objects, turn pages, write with a pen or pencil, type at a keyboard, or retrieve materials. A student’s physical abilities may also vary from day to day. All of these are areas in which accommodations are now being made for students with mobility impairments. Other examples include accessible locations for classrooms, labs, and field trips, wide aisles and uncluttered work areas, adjustable heights and tilt tables, all equipment located within reach of the individual, and note-takers, scribes, and lab assistants. I can go on and on about all the things that are happening, such as the addition of computers with speech input, Morse Code, alternative keyboards, course materials available in electronic format, and access to research resources on the Internet, and, of course, remaining vigilant to ensure environmental modifications are in place such as wheelchair ramps, curb cuts, restrooms, and elevators. Transportation is key to community integration of children with disabilities. There are loan programs for assistive technologies across the country that are being encouraged and promoted by the Administration of Children and Families in HHS. This is an excellent example of federal, state, and local collaboration to use creative means to meet the assistive technology and transportation needs of children with disabilities. We have programs for youth and also young adults with disabilities, a direct outcome of the New Freedom Initiative based upon constituent input in this new and very important target population. Government-wide, we are focusing much attention upon this. The population is young adults between the ages of 16 and 30. The trend there is that thousands of young people with disabilities are enrolling in Social Security insurance and Social Security disability insurance. These young adults are not successfully moving from high school to postsecondary education to employment and to independence. Why? They’re unable to secure appropriate housing and suffer from a lack of education, continued dependence on parents, social isolation, lack of involvement in community activities, and lack of affordable health care. Assistive technology can take care of all that. We are trying to coordinate and integrate federal, state, tribal, and local government services to address these issues. Regarding seniors with physical disabilities, I want to comment on some things that are emerging in a project at NIDRR, which has been looking at improved recovery and regaining of function following a hemiplegic stroke. One study focused on the development of a rehabilitator for arm therapy after brain surgery. This is a self-therapy rehabilitator for the arm after hemiplegic stroke and other types of brain injury to correct the current lack of appropriate technology. The fastest growing segment of our population today is seniors, specifically 85 years of age and older, who are most likely to develop many types of disability. I may add, for the women in the audience, that this growing population in the 85 and up category is women who are not married, who never had a significant other, or have not had children, so take your choice. By the year 2011 the baby boomers will be 65 and will probably have disabilities. Emerging technologies for seniors focus closely on related areas of communications, home monitoring, and smart technologies. Rapidly developing technologies include wireless technology, computers, sensors, user interfaces, control devices, and networking. Home monitoring products are leading to enhanced independence and quality of life. We’ve already mentioned that one of the most sensational technology transfers was for the hearing impaired, the Cochlear implants, probably the most technologically impressive advancement in assistive technology to date. Other emerging technologies include closed captioning eyeglasses, multiband technologies where two or more frequency bands can be separately amplified, multimemory hearing aid programs for a number of different patterns of amplification, and multimicrophone directional hearing aids. We have automatic signaling processes, automatic speech recognition technology, and implantable hearing aids and alerting devices. With all the emerging technologies we have, we are also focusing on accommodating people with multiple disabilities, for example, physical disabilities in addition to blindness. Here, technology is looking at solutions for wheelchair travel and technology for way-finding. A whole area is being developed with respect to robotics and manipulation. We developed a robot at Palo Alto, when I was in the VA, that could actually take food out of the freezer, put it in the microwave, take it out of the microwave, slice the food, feed the tetraplegic, clear the table, wash his face, comb his hair, and brush his teeth. That is available, but it’s not accessible and affordable. It costs hundreds of thousands of dollars to have that robot that we created in the laboratory. The technology is there. We’ve got to figure out how we can make this affordable and accessible. I would like to tell you more about all the things we are doing in transportation, but I’ll just say a word or two on people with disabilities who want to drive. There’s much being done in fitting adaptations for cars to ensure that people with physical disabilities can drive. Additionally, automakers and university researchers are testing and refining sensors, monitors, and other devices to compensate for the coming decline in reaction time and awareness among the growing number of baby boomers. Some manufacturers already sell options to make driving easier for aging people with disabilities. Some offer night vision options that project an infrared image of the road on the windshield, and there are many other things also emerging that use such technology. Finally, we need to take advantage of emerging technologies in regard to environmental controls as well as the building environment. We have this. It’s available. We don’t promote it enough. Things for the blind such as talking lights that say, “you are now in the hallway,” “you are now in the men’s room,” “you are now in your office.” We need to have voice command technology that is accessible and affordable to a person so they can say, “lights go out,” “thermostat go up,” or “windows lock.” We are not there yet. We need to move quickly on robots to assist tetraplegics. Finally, the built environment includes public and private buildings, tools and objects of daily use, and roads and vehicles being modified. Also, we must concentrate on universal design, which we are actively trying to promote with all the federal agencies. I’ve attempted to give you an overview of emerging technologies. I certainly haven’t touched on near enough, I must say, very little to enhance the lives of people with disabilities. We’ve reached a point where new science and technology is emerging every day. The challenge that we need to collectively look at, and I believe together we can accomplish this through the New Freedom Initiative, is to build partnerships across all federal agencies, at the state and local levels, with private industry, manufacturers, and advocacy organizations. That is the key to the success of everything we’ve done and will do. Now we need to ensure that all these remarkable technologies are available and accessible to those who need them through Medicare, Medicaid, temporary assistance for needy families, waivers and block grants, private insurance companies and private industry, and through every creative means possible. This is a very complex issue, but we all know it is of paramount importance. If we want to accomplish this, and indeed we do, it is something that no single one of us can do alone, but we must do it together to ensure that this assistive technology reaches the people that need it quickly, cost-effectively, and without going through a maze of paperwork. The age of promise ends rather in despair if we don’t do that. Yes, we live in a new age with the most remarkable technology ever known to man, but we must get it into the hands of those who need it. I always like to say that all people with disabilities, rich or poor, white, black, or Native American, young or old, all smile in the same language. If we continue to be vigilant, committed, persistent, and compassionate, we can ensure that they continue to smile. |
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