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

Birthdays, New Year’s Day and other events set annual occasions for many people to commit to health and wellness goals. The annual service or person-centered planning process can work in this way, setting the occasion for individuals with intellectual and developmental disabilities (IDD) to set health and wellness goals, and organize Home and Community Based Services (HCBS) and supports to meet those goals. Person-centered planning empowers individuals to have goals that address multiple dimensions of health and wellness, and support a self-determined and satisfying life.

States partner with the Centers for Medicare and Medicaid Services (CMS) to provide HCBS programs such as case management, HCBS waivers, and Community First Choice (CFC) programs. These programs support individuals’ participation in community life. In a growing number of states, these programs are flexible enough to support approaches to health and wellness. They can support fitness club memberships, health education classes, wellness coordination, and home modifications. These programs complement the Medicaid and Medicare programs that reimburse for needed and preventive health care and for medical transportation and medical escort services. Individuals can set and organize for both health care and health and wellness goals and objectives in their person-centered plans.

This article offers a series of questions and suggestions designed for use in person-centered health and wellness planning. They’re adapted from a guide developed by community partners in Montana titled, Montana Community First Choice (CFC): Health Supports Planning Guide (Traci, Hoffman, Monson, & Driggers, 2014) and expanded here to include additional resources available in all states. This information can help identify health and wellness goals and objectives to be included in individual service plans for issues related to the following areas:

• Health monitoring and care coordination
• Serious health concerns
• Chronic condition management
• Preventive care
• Health promotion

The suggestions address considerations of pressing or acute health care needs first, and then focus on healthy lifestyle planning and health promotion.

Health Monitoring and Care Coordination

An initial question to ask in the process of person-centered planning for health and wellness is in the area of health monitoring and care coordination for acute and chronic conditions. The question is whether the individual will need assistance to access health care professionals in order to better monitor their personal health and to coordinate their health care. They can review the following list of health care professionals to identify which ones they need to see, and think about what supports they need to access these professionals. Additionally, they can consider whether they want any of these professionals to help them identify their health and wellness goals and objectives for their person-centered plan. The list is as follows:

• Primary care physician
• Mental health professional (counselor, psychologist, psychiatrist, licensed social worker)
• Dentist
• Vision specialist (optometrist or ophthalmologist)
• Hearing specialist or audiologist
• Physical, occupational, and/or speech therapists
• Other health care specialists (e.g., physiatrist, dietitian)

There are a number of resources to support health care providers to deliver care to individuals with IDD and to be a part of the supports in their plan. Among them is Health Care for Adults with Intellectual and Developmental Disabilities: Toolkit for Primary Care Providers, published by the Vanderbilt Kennedy Center for Excellence in Developmental Disabilities at.

Serious Health Concerns

Another question that can be asked as part of the person-centered planning process is whether the individual would like to consult a health care provider, such as their primary care physician or a nurse, about any serious health concerns at that time. To make this decision, the individual should take time to think about the concerns they have (for example heart attack or stroke, undiagnosed diabetes, medication side effects, pain, weight management) and make a list of these concerns. Then they can work with their health care provider to identify related supports for inclusion in their person-centered plan. A health checklist may help them think about all of their possible health concerns. One such checklist that can be adapted for use in various settings is Personal Support Plan Health Care Checklist and Risk Worksheet  developed by the Montana Department of Public Health and Human Services. It can be accessed online at.

Another area of health-related planning for serious health concerns is an Advance Directive (also known as a Living Will), which allows an individual to document their wishes regarding end-of-life care. Does the individual need help to develop an Advance Directive? A member of the National Disability Rights Network in each state can provide information about how Advance Directives work in the state where the individual lives. A wide range of resources on end-of-life planning for individuals with IDD can also be found on the Quality Mall Web site of the Research and Training Center on Community Living at the University of Minnesota. In the section titled, “Grief, Loss and End-of-Life” (under “Life and Future Planning”) are a number of planning/discussion resources.

Chronic Condition Management

For individuals with chronic conditions, part of their wellness planning will need to include any assistance they need to manage chronic conditions and maximize their independence and quality of life. Below is a list of some specific chronic conditions with example management objectives to support that planning process. The individual can review the list and identify supports needed to address any conditions they might have:

• Diabetes: Develop, review, and follow diabetes management plan
• Cancer: Start or continue treatment; seek follow-up care if in remission
• Asthma: Develop, review, and follow asthma management plan
• Arthritis: Develop, review, and follow pain management plan
• Mental health or substance abuse problem: Develop, review, and follow behavioral health management plan
• Emphysema, chronic bronchitis, or COPD: Develop, review, and follow respiratory management plan
• Heart disease, irregular heart rate, or angina: Develop, review, and follow heart health management plan
• High blood pressure: Develop, review, and follow control plan
• Skin Condition (eczema, psoriasis): Develop, review and follow skin care and monitoring plan
• Chronic Pain: Develop, review, and follow pain management plan
• Other Chronic Conditions: Urinary tract infections, pressure sores, gum disease, menstrual pain, other?

There are widely available resources that can help with managing many chronic conditions, and can be useful in planning for that management. They include the online SuperTracker from the U.S. Department of Agriculture; it’s a state-of-the-art resource designed to assist individuals as they make changes in their life to reduce their risk of chronic disease and maintain a healthy weight. Another resource is the Web site of the National Center on Health, Physical Activity and Disability (NCHPAD) , which has extensive resources on adaptations and suggestions for physical activity that can help people with many different types of disabilities manage their health and wellness. And lastly, managing stress is often an important part of managing chronic conditions, and the American Psychological Association has a helpful tip sheet on stress .

In addition, if an individual’s chronic condition led to an emergency room visit in the past year, part of the planning process can be asking if the individual and their doctor can identify supports to help reduce or avoid the need for urgent or emergent care in the coming year. These supports could include education on managing the chronic condition, staff training, care or wellness coordination, and rewards or incentives for managing their condition successfully.

Preventive Care

Person-centered wellness planning also includes keeping track of preventive care screening recommendations, and asking whether the individual needs help to access preventive health care in the coming year. That care can include oral health screenings, mammograms, pap smears, colorectal cancer screening, bone density screening, prostate exams, and immunizations, among others. For current recommendations, a useful resource is The Guide to Clinical Preventive Services from the U.S. Department of Health and Human Services.  The booklet, Making Preventive Health Care Work for You: A Resource Guide for People with Physical Disabilities , published by the Center for Disability Issues and the Health Professions, has information and tools to help people with disabilities get the most from preventive health care visits. It is available at.

Health Promotion

Lastly, there are community resources, including health education programs, that individuals with disabilities can join to promote their health. In shaping a person-centered plan, one question to ask is what programs or activities the individual wants to participate in this year, and what supports and preparation they’ll need to access these community resources. Some health education/wellness programs that are available in most states include those offered by clinics, hospitals, community organizations, national associations, and disability organizations in areas such as diabetes prevention and management, arthritis management, fall prevention, tobacco cessation, weight management, alcohol/drug abuse prevention, exercise promotion, healthy cooking and eating, sexual health, and violence prevention. Local health departments can provide information on health education classes. Contacts for departments can be found at or NACCHO Health and Disability program or at disability@naccho.org. Centers for independent living may also have programs tailored to specific needs of individuals with disabilities. 

• Traci, M. A., Hoffman, T., Monson, J., & Driggers, J. (2014). Montana Community First Choice (CFC): Health supports planning guide. Missoula, MT: The University of Montana Rural Institute.