Innovations in accessible health care supports for people with intellectual disabilities

by David O’Hara, PhD., Chief Operating Officer, Westchester Institute for Human Development, Valhalla NY, USA


Health and mental health services around the world grapple with two related problems that reduce the effectiveness and increase the costs of health care— how to support effective self-care for chronic health problems and how to improve health literacy. Recent work at the Westchester Institute for Human Development (WIHD) in New York is beginning to demonstrate how the innovative use of personal computer and communications technologies can help change this situation—starting with people with intellectual
The goals for the use of these new technologies include:
◆ Promoting self-determination in health care
◆ Reducing persistent health/ mental health disparities/ inequalities
◆ Removing barriers to successful adoption of known models of effective chronic disease care and enhance primary care access
◆ Creating functional approaches to health literacy.

Although the health/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 delivery of health care in general. For example, psychiatric disorders and other specialist health problems are common among adults with intellectual disabilities and their profile of psychiatric disorders differs from that found in general psychiatry. There is a high level of co-morbidity, with over 30% of people with intellectual disabilities also having chronic mental health problems. Almost 20% will have serious behavior disorders and 9% will have diagnoses along the autism spectrum.

Epilepsy is a co-diagnosis in over 60% of group using specialist psychiatric services (Bhaumik et al. 2008). The mental health problems themselves are a very diverse group, including earlyonset dementias and persistent mood disorders as well as mental and behavioral health problems that are part of a genetic condition (such as Prader Willi Syndrome).

But more to the point for our work are the similarities in health disparities and health outcomes for both people with chronic mental health problems and people with intellectual disabilities. In mental health the available data also show that people diagnosed with mental illnesses die prematurely from multiple 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 (National Council on Disability 2008). 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 (Institute of Medicine 2006). People with intellectual disabilities have increased risk for secondary health conditions (cardiovascular disease, diabetes, high blood pressure, obesity, osteoporosis); are less likely to routinely exercise; have generally poor health outcomes and reduced life expectancy (Scheepers et al. 2005).

Typically, health care systems try to maximize the use of generic health and mental health services for people with intellectual disabilities. Often this strategy includes active policies and recommended practices designed to facilitate access to general health/psychiatric services. This includes calls for close collaboration between general and specialist service providers with clear care 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 comorbidities among persons with intellectual disabilities present their own challenges.

Also health care systems generally are finding that the effective care of people with chronic health problems requires very targeted interventions and closely coordinated generic and specialist care—something which they often have difficulty providing. Much is made of the promise of electronic health records and the possibilities of telehealth strategies for achieving more coordinated and better care—and improved health outcomes, but so far these innovations have not become fully integrated into mainstream health care delivery.

So the goals for innovative health/mental health services built on the use of accessible information and communication technologies are to learn from the lessons of the past and create the possibility of truly integrated health-care delivery models. These technologies are designed to ensure that they always promote self-determination in health care for people with intellectual disabilities, while at the same time removing barriers to the use of effective health care models through improved health literacy and health promotion strategies. This shift in the focus for innovation to the promotion of self-determination in health care builds on the voices and experiences of those directly involved. ‘Perhaps the greatest lesson is that as a society we have not really been listening and paying attention to [people with intellectual disabilities].

We have been too likely to expect others to speak their needs. We have found it too easy to ignore even their mostobvious and common health conditions. Just as important, we have not found ways to empower them to improve and protect their own health’ (Closing the Gap 2002). What is fascinating about these lessons learned in health care for people with intellectual disabilities is how closely they follow some of the experiences of Wagner and colleagues that led to the development of their models for chronic disease care (1996). Among the critical elements in this approach are the creation of individualized health-care plans and the use of self-management education programs. This approach also stresses the importance of the use of an electronic health record to promote effective care coordination among the medical care team; remote care management; and the importance of close communication between patients and their health-care team.

However, current self-management health education and health promotion programs are not targeted or adapted for people with intellectual disabilities. They do not address difficulties in developing an understanding of the effects of their behavior on their health for these individuals. Also, few include education of health-care professionals to work collaboratively with people with intellectual disabilities and their caregivers in community-based health programs.

The work of a new Center on Disability, Health and Technology at the Westchester Institute for Human Development is designed to address all these issues. Its mandate for the promotion of health and well-being among people with intellectual disabilities includes: developing effective health promotion interventions; examining risk factors and measures of health, functioning, and disability; and evaluating the potential of existing and emerging information, communication, assistive and smart technologies to enhance the health of people with disabilities.

The Center’s work builds on three areas of technological innovation to create accessible health-care supports. The first 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, desktop or small ultramobile computers, as well as the new smart cellular phones. The curriculum is incorporated into a customized patient/provider portal ‘Desktop Discovery’, developed by the WIHD accessible information and communication technology partner AbleLink Technologies. The image below shows the icon for this curriculum on the touch screen of an ultramobile pc (figure 1). Touching the image produces a verbal of what the icon represents with the instruction to touch the image again to run the application. Other images represent other elements of a custom interface for an individual patient.

Figure 2 shows the screen display for the online curriculum ‘My Health, My Choice, My Responsibility’ which is designed to integrate with the electronic health record system used by WIHD and provided by its EHR record provider CureMD.

This training program on health self-advocacy curriculum ‘My Health, My Choice, My Responsibility’ covers a range of topics over an 8-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: Take charge of your health

  • Healthy lifestyles—Not being sick doesn’t make you well
  • Setting goals, getting support, following through

Develop a health plan

  • Knowing your health history
  • Understanding your own health and wellness needs

Be a health self-advocate

  • Preparing for medical appointments
  • Speaking up for good health

Online resources include tools for collecting health and health-management information and the development of a personal health-care self-management plan.

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, for an individual with physical disabilities, the display contains links to video clips showing personal-care assistants the appropriate ways to help with mobility or personal-care issues.

For another individual, the personal computer display might change during the day to prompt and coach someone through a critical health-care task (figure 4). So, for example, this technology has been used on individual smart phones to remind and coach dental patients with very poor oral hygiene practices through an effective oral hygiene program (O’Hara, et al. 2008).

Almost any other aspect of self-management support can be made available to an individual through customized information, or the use of tools for nutrition management (Figure 5), or patient self-report on symptoms, or care compliance using and online survey ‘Health Quest’ (Figure 6).

Figure 6: Health Quest–An accessible survey tool to enable individuals with intellectual disabilities to become active participants in their own health and wellness.

All these accessible technologies are designed so that customization can easily be accomplished using built-in software applications located on the individual’s computer. Alternatively, they can be ‘pushed’ out to a patient using the resources built in to the electronic health record (EHR) used by WIHD. This application produced by WIHD’s EHR technology partner CureMD contains the full complement of EHR resources, as well as a custom patient/caregiver/ provider portal designed for WIHD. This customization provides the ability for the generation of targeted health records and health information which can be accessed electronically or printed out.

Two new initiatives that will build on these accessible electronic health technologies include:

  • A two-year grant to WIHD from the New York State Department of Health under the Health Care Efficiency and Affordability Law. This grant is designed 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 chronic disease care.
  • A five-year grant to WIHD from the Administration on Developmental Disabilities (as part of a consortium of University Centers for Excellence in Developmental Disabilities (UCEDD)), to develop and demonstrate model curricula designed to enhance self-determination in health. The other Centers include the University of Missouri at Kansas City, Institute for Human Development; The Kansas University Center on Developmental Disabilities—Lawrence; the University of Illinois at Chicago Institute on Disability and Human development; and University of Oregon at Eugene (UCEDD).

The promise of these new initiatives is that, while they are primarily focused on reducing the often critical health disparities among people with intellectual disabilities, they also address generic problems in health care delivery.