Impact Feature Issue on Supporting Wellness for Adults with Intellectual and Developmental Disabilities

HealthMatters Kentucky:
A Multi-Level Approach to Building Health Promotion Capacity


Lindsey Catherine Mullis is Health and Wellness Coordinator at the Human Development Institute, University of Kentucky, Lexington. She may be reached at

Kathy Sheppard-Jones is Interim Director at the Human Development Institute. She may be reached at

We all recognize that healthy lifestyle choices are beneficial for everyone. However, startling national data show that people with intellectual and developmental disabilities (IDD) are disadvantaged in regards to health and wellness outcomes (National Core Indicators™, 2014). Unfortunately for Kentucky, those disparities are even higher, with over 70% of those on Kentucky’s Supports for Community Living Medicaid waiver being overweight or obese, and only 14% engaging in at least 30 minutes of moderate physical activity three days a week. These statistics resulted in a call to action for Kentucky. HealthMatters Kentucky, as a part of larger scale-up initiative, is a health promotion program aimed at improving health and health promotion of people with IDD throughout the state.

For participants in HealthMatters Kentucky, exercising with others supports physical and social wellness.

A combination of stakeholder engagement, purposeful planning, community input, training, and resource development is resulting in increased opportunities and knowledge that is positively impacting health outcomes for people with IDD in Kentucky. Partners in this collaborative include the Human Development Institute (HDI) at the University of Kentucky, Kentucky’s University Center for Excellence in Developmental Disabilities; the Kentucky Division of Developmental and Intellectual Disabilities; provider agencies supporting individuals with IDD around the state; and the Rehabilitation Research and Training Center on Developmental Disabilities and Health (RRTCDD), University of Illinois at Chicago. The power of the collaboration is that it addresses, and helps ameliorate, the disconnect that can occur between academia, state policymakers, and community organizations, harnessing the combined strategies utilized by these entities to enable successful statewide health promotion scale-up efforts.

In December 2010, recommendations were made to the state on the critical need to improve health outcomes for Kentucky. That spring, HDI provided a training opportunity for university staff and faculty, agency providers, state trainers, and students using the evidence-based HealthMatters curriculum developed at RRTCDD (Marks, Sisirak, & Chang, 2013; Marks, Sisiark, & Heller, 2010). This unique training audience started conversations about what could be done, and how various partners could work together. In January 2012, HDI was able to offer mini-grants to 12 organizations that devised projects or plans to incorporate health and wellness into their communities, using their own unique strengths and interests. Some developed community gardens; others offered weekly health programming. The next step was to offer health education that highlighted a model of peer coaching. Nineteen organizations engaged in this program, impacting over 100 people who received their services, while also starting dialogues with staff around health and wellness. In 2013, an amended Supports for Community Living waiver went into effect that included a new focus on health objectives. In the following months, the collaborations and powerful data of successful health promotion programming provided the fuel to create a new position at HDI for a statewide health and wellness coordinator, with the first objective of implementing a statewide scale-up of the HealthMatters program.

The purpose of this scale-up is to test and describe an innovative framework to ensure sustainable adoption of HealthMatters by local service providers, and to demonstrate how tailored frameworks can be used to scale-up a health promotion program across a network of service providers. In addition, as part of a research study with the RRTCDD the scale-up will not only have a positive impact on health outcomes for people with IDD in Kentucky, but in other states as well through the larger overall reach of the HealthMatters scale-up initiative.

To date there are 15 organizations from all corners of the state taking part in HealthMatters Kentucky. Participants with IDD are in groups that range in size from as small as six to over 50 as several organizations are offering programming for all agency personnel. A part of the HealthMatters Kentucky agreement is that each location develop an onsite wellness committee. This component is critical for sustainability efforts to develop a culture of healthy behavior change within the organization. The committee is comprised of at least three staff members as well as self-advocates, community leaders, executive administration, and local health professionals. Meetings are held regularly to discuss health and wellness goals along with identification of resources needed to achieve those goals that go above and beyond the scope of the HealthMatters programming.

The role of the health and wellness coordinator is to assist with training efforts for the scale-up and to offer support to the initiative. Helpful resources are routinely made available at the initiative Web site ( including supplemental lessons and activity ideas, health messages, success stories, and motivational resources. The biggest challenge has revolved around the idea of adapting exercises or level of programming. The solution has been to support the ground-up approach of always starting at the same level while thinking outside the box and then adapting accordingly to meet individual needs. This applies to individuals with or without disabilities, especially regarding health. For example, one person might want to lose weight as a health goal while another might want to gain strength and independence. Healthy living is unique to each person, and HealthMatters Kentucky supports people in learning what it means to them to be healthy, and how to take the steps to live that healthy lifestyle.

One of the most interesting points to come out of this venture has been the dynamic between staff and participants with IDD. Everyone can benefit from health promotion programming that includes learning how to make healthy choices and be successful in working towards individualized health goals. The most successful programming efforts have been at the locations where the staff are included in the healthy culture change. Some locations have “biggest loser” contests with both staff and participant winners losing over 50 pounds in 12 weeks, while others provide a pedometer daily-steps challenge for the entire organization. Several have created walking, gardening, or cooking groups that include staff and the local community. It is this component of inclusion and equality in leading a healthy lifestyle that truly makes for remarkable changes.

Examples of expansions at the individual level include the information from the wellness committees based on the HealthMatters programming that is being communicated to case managers and support coordinators. The individual goals are being incorporated into the recommendations made to the support team for individual support plans (plans of care) to support people in pursuing their healthy lifestyle goals.

Kentucky was the first state to start the HealthMatters scale-up and the inspiring successes have prompted other states to follow, including Alaska, Illinois, and Missouri. There are sure to be more positive health outcomes to come.

  • Marks, B., Sisirak, J., & Chang, Y. C. (2013). Efficacy of the HealthMatters program train-the-trainer model. Journal of Applied Research in Intellectual Disabilities, 26, 319–334.

  • Marks, B., Sisirak, J., & Heller, T. (2010). HealthMatters: The exercise and nutrition health education curriculum for people with developmental disabilities. Baltimore: Paul H. Brookes Publishing Co.

  • National Core Indicators, Human Services Research Institute and National Association of State Directors of Developmental Disabilities Services. (2014). Consumer outcomes: Final report. 2012-2013 NCI adult consumer survey data.