healthy approaches to living to community members with developmental disabilities for real lifestyle change with this health promotion program

Find out how in this Q&A with the authors of the Health Matters curriculum ...

About the authors

Dr. Beth Marks

Beth Marks, RN, Ph.D., is Associate Director in the Rehabilitation Research and Training Center on Aging with Developmental Disabilities at the University of Illinois at Chicago (UIC). She is also a research assistant professor in the Department of Disability and Human Development at UIC. Dr. Marks directs research activities related to health promotion, health education, health advocacy, primary health care, and occupational health and safety for persons with intellectual and developmental disabilities.

Jasmina Sisirak

Jasmina Sisirak, M.P.H., is a project director in the Rehabilitation Research and Training Center on Aging with Developmental Disabilities at UIC. Her research interests consist of nutrition, health literacy, and health promotion for persons with intellectual disabilities. Ms. Sisirak is a doctoral student in Community Health Sciences in the School of Public Health at UIC.

Dr. Tamar Heller

Tamar Heller, Ph.D., is a professor and the head of the Department of Disability and Human Development at the University of Illinois at Chicago. She directs both the UIC Rehabilitation Research and Training Center on Aging with Developmental Disabilities and the University Center of Excellence in Developmental Disabilities for the State of Illinois. Dr. Heller specializes in support interventions for individuals with disabilities and their families, with a focus on self-determination, health promotion, and aging of people with developmental disabilities.


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Q: Who is the Health Matters Curriculum intended for?

A: The Health Matters Curriculum is for anyone with an interest in teaching health education classes tailored to persons with developmental disabilities. Readers should understand the pivotal role support persons play in helping people with disabilities obtain and maintain personal skills and behavioral choices that impact their health status.

The Health Matters Curriculum is an evidence-based health promotion program designed to help overcome potential impediments to healthy lifestyles such as negative attitudes toward disability, fewer social supports for people with disabilities, lack of understanding regarding unique needs, and difficulty accessing appropriate services.

Q: Exercise and nutrition are vital to everyone's health; why is it important for adults with developmental disabilities to have a curriculum tailored to them?

A: Health education has the same potential for improving physical, mental, and social functioning for people with disabilities as for anyone else. However, despite significant interaction with healthcare professionals, people with disabilities often are not given access to health information.

The Health Matters Curriculum is built on the premises that:

  • people with disabilities have a right to receive education and services that promote their health

  • people can contribute to their own well-being by becoming knowledgeable about their health and health resources, and by becoming active participants in health promotion activities

  • health promotion is not a form of social control, but must be based on the needs and lifestyle preferences of individuals, and

  • support from caregivers and increased access to exercise activities promote exercise adherence.

Q: Can you explain how the Health Matters Curriculum works?

A: The exercise, nutrition, and health education classes in the curriculum move people through the process of making lifestyle changes. It is based on the five stages of change in the Transtheoretical Model of Change: precontemplation, contemplation, preparation, action, and maintenance, and on Bandura's Social Cognitive Theory.

The curriculum guides participants and service providers through changes in a cyclical rather than a linear process and through improvement in self-confidence. People often move back and forth between stages a number of times before they maintain their behavior change goal. They also use different activities to move from one stage of change to another. So it's important to target the "right" activity at the right time. Using the curriculum, you can tailor activities to match a person's stage of readiness to change their behavior.

For people not yet interested in becoming more active, for instance, you may find that encouraging step-by-step progress along the continuum of change may be better than urging them directly into action.

The classes emphasize maximum individual involvement in the planning and implementation of exercise and nutrition goals and incorporate the principles of choice, self-determination, self-efficacy, self-advocacy, rights, and responsibility.

Q: Do you have a success story you'd care to share of someone who has completed the Health Matters training?

A: As just one example, here's a note we received from a community-based organization: "By far, this program is one of the best things we have provided to our clientele. We have recently developed a 'maintenance class' for those who went through the first 12-week class because we have seen the need for on-going support. The benefits to our consumers with developmental disabilities are broad and varied. Though weight loss was not our primary goal, we have seen them shed weight. We have also noticed an increase in their stamina and endurance. They are drinking more water and monitoring their food intake, and in general just making healthier lifestyle choices."

Q: Have you seen any unexpected benefits as a result of the Health Matters training?

A: We have found that staff members teaching the classes have taken the curriculum home to use with their families. After teaching the course, they have made their own lifestyle changes and have experienced improvements in physical and psychological health.

Q: From a pragmatic standpoint, what are the benefits to the community of implementing a health promotion program for individuals with disabilities?

A: The benefits include happier people who are better able to advocate for their own health. Also, as people learn to take charge of their health, with or without support, they are in a much better position to command the resources they need to participate in meaningful activities. From a purely pragmatic standpoint, health promotion and disease prevention are much more cost-effective for the community than disease management and treatment.

Q: In your experience, what is the main obstacle to implementing a program such as Health Matters on a broad basis (even nationwide) and what would it take to overcome that obstacle?

A: The main obstacle is organizational capacity and commitment. With high staff turnover rates nationally in community-based organizations, maintaining capacity for staff training is often problematic. Oftentimes, organizations do not have processes in place related to promoting health that are aimed at training new employees. Additionally, organizations need to develop policies, employee evaluation mechanisms, and other organizational structures necessary to encourage sustainability of health promotion programs. By developing appropriate structures and continuous resources, consumer health indicators are more likely to remain positive in the long-term. In other words, we must ensure that everyone "gets the memo."

Health Matters: The Exercise, Nutrition, and Health Education Curriculum for People with Developmental Disabilities