Around the globe, health and mental health services grapple with two concerns that have reduced the effectiveness and increased the costs of health care: low levels of worldwide health literacy and a lack of effective support for self-care of chronic health problems. Recently, however, studies at the Westchester Institute for Human Development (WIHD) are finding that innovative use of personal computers and communications technologies can help change this troubling status quo, beginning with a capacity for providing improved support for people with intellectual disabilities.
A regional organization in New York, WIHD is part of a national network of university-affiliated centers dedicated to improving the lives of people with disabilities through education, service, and research. Services provided by the organization, which often follow a child throughout his or her lifespan, include comprehensive medical and dental care programs, as well as educationbased support and guidance into the working world. “Whatever need we had for my daughter, WIHD has had the service to address it,” said Barbara Stein, the mother of a 19-year-old with Down syndrome who has been utilizing WIHD services for 17 years.
NEW TECHNOLOGY AT WIHD: HEALTH CARE CHALLENGES & SOLUTIONS
New technologies at WIHD have been developed to aid people with and without intellectual disabilities toward the following goals:
•Promotion of self-determination in health care
•Reduction of persistent health and mental health disparities and inequalities
•Removal of barriers to successful adoption of known models of effective chronic disease care and enhancement of primary care access
•Creation of functional approaches to health literacy
Although the health and mental health problems that need to be addressed for people with intellectual disabilities present their own health care challenges, the potential solutions have broad implications for the general delivery of health care. For example, psychiatric disorders and other specialized health problems are common among adults with intellectual disabilities, and the profile of psychiatric disorders differs from that found in general psychiatry. Over 30% of people with intellectual disabilities also experience chronic mental health problems, almost 20% will have serious behavior disorders, and 9% will have diagnoses along the autism spectrum. Epilepsy is also a frequent co-diagnosis for those receiving specialized psychiatric services.
HEALTH DISPARITIES FOR PEOPLE WITH MENTAL HEALTH DISEASE VS. PEOPLE WITH INTELLECTUAL
DISABILITIES Research done at WIHD illustrates that people with chronic mental health problems and people with intellectual disabilities share many of the same health disparities and health outcomes. Available data also shows that people diagnosed with mental illnesses often die prematurely from a variety of causes. People with psychiatric disabilities experience heart disease, diabetes, obesity, high blood pressure, and other severe medical problems in disproportionate numbers compared to the general population. More specifically, people with mental illnesses who are served by our public health systems die an average of 25 years younger than the general population, and people with intellectual disabilities carry an increased risk for secondary health conditions, including cardiovascular disease, diabetes, high blood pressure, obesity, and osteoporosis. This demographic of people is also less likely to routinely exercise, resulting in generally poor health outcomes and reduced life expectancy.
Health care systems usually try to maximize the use of generic health and mental health services for people with intellectual disabilities, a strategy which often includes active policies and recommended practices designed to facilitate access to general health and psychiatric services. This sort of care includes calls for close collaboration between general and specialist service providers, with clear pathways for the transfer of people with intellectual disabilities and mental health problems between specialist and generic mental health services, as well as plans for joint care where necessary.
In many ways, the coordination of health care delivery and access between generic and specialist service providers is the same across all patient groups, however, the often extensive health co-morbidities among persons with intellectual disabilities present their own challenges. Additionally, many health care systems find that effective care of people with chronic health problems requires very targeted interventions and closely coordinated generic and specialist care—something which these systems often have difficulty providing. Because of these limitations, much has been made of the promise of electronic health records and the possibilities of telehealth strategies for achieving more coordinated and better care, as well as improved health outcomes. However, to date these innovations have not become fully integrated into mainstream health care delivery.
WIHD’s goals for innovative health and mental health services are built upon the use of accessible information and communication technologies, exploring the possibility of truly integrated health care delivery models with technologies that are designed to ensure that they always promote self-determination in health care for people with intellectual disabilities. These exciting technologies can also remove barriers to the use of effective health care models through improved health literacy and health promotion strategies.
This powerful shift in focus toward innovation in the promotion of self-determination in health care builds on the voices and experiences of those who are directly involved and affected. Among the critical elements in this approach are the creation of individualized health care plans and the use of self-management education programs—an endeavor which stresses the importance of use of an electronic health record to promote effective care coordination among the medical care team, the benefits of remote care management, and the advantage of close communication between patients and their health care team.
THE NEW CENTER ON DISABILITY, HEALTH AND TECHNOLOGY AT WIHD: ADDRESSING HEALTH CARE NEEDS FOR PEOPLE WITH DISABILITIES
Today, self-management health education and health promotion programs are not targeted or adapted for people with intellectual disabilities. As such, they do not address difficulties in developing an understanding of the effects of the behavior of people with disabilities on the health of the individual. Additionally, few of these programs include attempts to educate health care professionals in working collaboratively with people with intellectual disabilities and with their caregivers in community-based health programs.
The work of WIHD’s new Center on Disability, Health and Technology is designed to address all of these important issues. Its mandate for the promotion of health and well-being among people with intellectual disabilities includes the development of effective health promotion interventions, the examination of risk factors and measures of health, functioning, and disability, and the evaluation of the potential for existing and emerging information, communication, assistive and smart technologies to enhance the health of people with disabilities. This organizational mandate builds on three areas of technological innovation to create accessible health care support. The first such innovation is the development of an online health education training curriculum designed to be fully accessible by people with different cognitive and communication abilities.
This curriculum, “My Health, My Choice, My Responsibility” can be accessed using the touch-screen potential of many current personal computer technologies from full-size desktops to small ultramobile computers and cellular phones. The program is incorporated into a customized patient-provider portal called “Desktop Discovery,” which is developed by the WIHD accessible information and communication technology partner AbleLink Technologies. The image in Figure 1 [left] shows the icon for this curriculum on the touch screen of an ultramobile personal computer. Touching the image produces a verbal description of what the icon represents, with the instruction to touch the image again to run the application. Additional images represent other elements of a custom interface, each specific to an individual patient.
“My Health, My Choice, My Responsibility” [Figure 2] covers a range of topics over an eight-session program. It can be used in small groups, facilitated by health education and self-advocate trainers, or as an independent online resource. Session topics include such areas as:
•Maintaining a healthy lifestyle
•Setting goals, getting support, and developing a health plan
•Knowing your health history
•Understanding your own health and wellness needs
•Preparing for medical appointments
•Speaking up for good health
Online resources also include tools for developing a personal health care self-management plan and for collecting health and health management information.
Accessing the Home Care icon in Figure 1 leads to a customized set of self-management or home care tasks that can be customized to meet the health care needs of the individual. In the example shown in Figure 3, an individual with a disability can use the display to access links to video clips which show personal care assistants the appropriate ways to help with mobility or personal care issues.
For someone who does not have a disability, the personal computer display might change during the day to provide prompting and coaching through a critical health care task [Figure 4]. This technology has been used on individual smart phones to coach dental patients with very poor oral hygiene practices through an effective oral hygiene program. “Janice,” the application might say, “after you eat every meal, you need to go get your brush and your toothpaste and brush your teeth.”
Limitless aspects of additional self-management support can be made available to an individual through customized information, or through the use of tools for nutrition management [Figure 5], as well as through patient self-reports on symptoms and care compliance in an online survey called “Health Quest” [Figure 6].
All of these accessible technologies can easily be customized using built-in software applications located on an individual computer, and can be “pushed” out to a patient using the resources built into WIHD’s Electronic Health Record (EHR). This application, produced by WIHD’s EHR technology partner CureMD, contains the full complement of EHR resources as well as a custom patient/caregiver/health care provider portal. Full customization allows for the easy generation of targeted health records and health information, which can be accessed electronically or printed.
THE FUTURE OF ELECTRONIC HEALTH TECHNOLOGY AT WIHD
Under the Care Efficiency and Affordability Law, a two-year grant has been awarded to WIHD from the New York State Department of Health. The aim of the grant is to demonstrate how the use of Telemedicine strategies can enhance primary care access for individuals with intellectual disabilities, reduce the inappropriate use of emergency rooms, and improve care for those suffering with chronic diseases.
WIHD has also received a five-year grant from the Administration on Developmental Disabilities, as part of a consortium of University Centers for Excellence in Developmental Disabilities to develop and demonstrate model curricula for the enhancement of self-determination in health.
By enhancing its organizational practice of making advancements for people with intellectual disabilities, WIHD furthers the goal of empowering people with disabilities to take charge of their own health care. John Maltby, whose son Andrew has been receiving services at WIHD for the past 16 years for a seizure disorder, says that Andrew now has no fear or concern about visiting WIHD doctors and feels completely involved in his own health care. “Every program at WIHD is infused with the principles of respect for the role of the family,” Maltby said, “as well as for self determination for the individual, and a continual striving for best practice in the field.” Armed with its new initiatives, WIHD continues to work to reduce the often critical health disparities among people with intellectual disabilities, and to address problems that currently disadvantage today’s health care delivery.
by David O’Hara, PhD
Westchester Institute for Human Development wihd.org