IMPROVED PROGRAMS FOR PERSONS WITH DISABILITIES

I appreciate being given the opportunity to speak to the Committee today. I am Dr. Donald Lollar, Chief of the Disability and Health Branch in the National Center for Environmental Health at the Centers for Disease Control and Prevention. The mission of the CDC is to promote health and quality of life by preventing and controlling disease, injury, and disability. We do this by identifying emerging and reemerging public health problems, determining the scope of these public health problems, conducting research to identify preventable causes of public health problems, and developing and evaluating public health intervention programs. Since 1988, the mission of the Disability and Health Branch has been to promote the health and well being of all people with disabilities in the U.S. including the 5 millions of people served by Supplemental Security Income and Social Security Disability Insurance. The Disability and Health Branch is currently supporting both research to better measure the disabling process and state programs to improve the health of people with disabilities.

I will focus on two primary areas. First, I will describe how the social and physical environment plays a vital role in either inhibiting or encouraging people with a disability to participate fully in society. Second, I will describe in broad terms how an emerging World Health Organization classification system might influence how society better defines and meets the needs of people with disabilities.

Typically, when a person with a physical, intellectual, or emotional impairment is not participating in society the way other people do, one assumes that it is because the person’s disabling condition prevents them from doing so. In reality, disability is a complex interaction of a person with their environment. Some factors that influence participation are within a person, including medical conditions, personal strengths and limitations. Other factors are outside a person, including the physical and social environments. Advances in technology and changes in attitudes have made it clear that people with disabling conditions are capable of doing many things.

Technology has provided the tools to help people with disabilities perform daily life tasks vital to their autonomy such as personal care, mobility, communication, and learning. Assistive technologies that allow more personal autonomy include power wheelchairs, voice synthesizers, and special telephones and computers. In addition, factors such as accessibility to buildings or transportation and acceptance by others also influence participation at work or school. Unfortunately not all people with disabilities have access to these technologies, nor have all attitudes in our society changed. As a result, the opportunities for complete participation that are possible have not been extended to all persons with a disability.

Let me give you an example. Jonathan is a young 21 year old with cerebral palsy. Without assistance, he is substantially limited in personal activities, such as mobility and communication. With the aid of a power wheelchair and a voice synthesizer, he can move around and communicate with others. His family has purchased an adapted van that allows him to travel.

Jonathan faces several types of barriers to his full participation, some at the person-level and some at a broader societal level. Technology has removed several of his person-level limitations, such as in the areas of freedom of movement and accessibility. If, however, Jonathan wants to participate more fully in society, such as by working or developing friendships, other environmental factors must be addressed. In addition to matching his abilities with potential jobs he might consider, the work place must be accessible for his wheelchair and, not unlike many of us, his work setting may need to be adapted to accommodate his needs. Coworkers’ attitudes toward Jonathan—both positive and negative—also impact his participation.

To assess the various disability dimensions, the World Health Organization (WHO) has developed the International Classification of Functioning and Disability (ICIDH-2). The ICIDH-2 is a way to understand and communicate more clearly about the disabling process. The system describes the relationships between the various parts of the disabling process—the physical or body functions, the personal everyday activities, participation in society, and environmental factors. ICIDH-2 provides a common language that allows us to talk with one another about the different life dimensions people with disabilities experience. The language describes each individual dimension separately and then focuses on how they may interrelate with each other. Jonathan, for example, experiences impairments of various body systems, has difficulty with everyday activities of moving around, personal care, and communication. With the intervention of assistive technology, his activity limitations are reduced. Even with greater performance in personal everyday activities, however, he may still be restricted from participating in work, recreation, or even social relationships. This restriction in participation is, in this case, not associated with his impairments or his personal activity limitations, but rather due to environmental factors, such as architectural barriers, social program guidelines, or attitudes toward people with disabilities.

The ICIDH-2 may enable society to better define and meet the needs of persons with a disability. The advantages of ICIDH-2 are that it combines an understandable framework, which includes environmental factors, addresses the interaction of the person and the environment on participation in society, and creates a commonly used classification system for future research. While the concepts of ICIDH-2 are useful its implementation is just beginning. The future utility of the system will depend on how widely it is used and how well users are able to apply it.

To put it another way, participation in work, school, or any other area of daily life depends on both the individual and their environment. As their circumstances or situations change, an individual with an impairment or disability who was not previously able to do so may be able to attend school or work.

A useful system of classifying disabilities needs to recognize the complexity of the interactions between people with disabilities and their physical and social environments. Disability policy should more broadly address environmental barriers, which restrict full participation by people with disabilities. CDC would be pleased to work with this Committee, other federal and state agencies, and researchers to improve the health and participation of people with disabilities.

Thank you, Mr. Chairman and members of the Committee, for the opportunity to come before you today. I will be happy to answer any questions you have about CDC’s Disability Program or any other areas of my remarks today.