Purpose of Guidelines
People with disabilities face significant barriers when attempting to access health and wellness activities. They are more likely to have more than one health practitioner and to have secondary conditions requiring some type of ongoing treatment or medication, leaving them vulnerable to a lack of coordinated or long-term care. People with disabilities are also less likely to have appropriate, affordable health care coverage. This leaves this population especially vulnerable because not only do they run the risk of not receiving preventative care, but they also can have difficulty accessing health and wellness information and services if those services are not designed to consider their disability. Additionally, people with disabilities have a higher likelihood of being obese, physically inactive and at risk for diabetes.
As part of the National Center on Health, Physical Activity, and Disability (NCHPAD), the Center on Disability at the Public Health Institute (COD-PHI) has developed these Guidelines for Disability Inclusion in Physical Activity, Nutrition, and Obesity Program Initiatives to assist in the updating of community health programs and policies to be inclusive of the needs of people with disabilities. The guidelines were generated based upon previously recommended guidelines and structured input and review from a panel of national experts. The flow of the development of the Guidelines can be seen in Figure 1.
Figure 1: Use of Guidelines to Disability Inclusion to Achieve Inclusive Program Initiatives and Policies
Guidelines
- Objectives Include People with Disabilities: Program objectives should explicitly and unambiguously state that the target population includes people with a range of different disabilities (cognitive, intellectual and other developmental disabilities, mobility, visual, hearing, and mental health disabilities).
- Involvement of People with Disabilities in Development, Implementation & Evaluation: Program development, implementation, and evaluation should include input from people with a range of different disabilities and their representatives (e.g., community members or other experts with disabilities, potential participants with disabilities and their family members, personal assistants, and caregivers).
- Program Accessibility: Programs should be accessible to people with disabilities and other users, socially, behaviorally, programmatically, in communication, and in the physical environment.
- Accommodations for Participants with Disabilities: Programs should address individual needs of participants with disabilities through accommodations that are specifically tailored to those needs.
- Outreach and Communication to People with Disabilities: Programs should use a variety of accessible methods to outreach and promote the program(s) to people with disabilities.
- Cost Considerations and Feasibility: Programs should address potential resource implications of inclusion (including staffing, training, equipment, and other resources needed to promote inclusion).
- Affordability: Programs should be affordable to people with disabilities and their families, personal assistants, and caregivers.
- Process Evaluation: Programs should implement process evaluation (with transparent monitoring, accountability and quality assurance) that includes feedback from people with disabilities and family members, personal assistants, caregivers or other representatives, and a process for making changes based on feedback.
- Outcomes Evaluation: Programs should collect outcomes data, using multiple disability-appropriate measures.
Function of Guidelines
The guidelines can be used by government and private entities and organizations that create, implement, or oversee program initiatives and policies in the areas of physical activity, nutrition, and obesity. These guidelines are intended to be broad enough to cover a variety of local, state, and national programs. They will be used to assure inclusion of disability as government agencies and community organizations develop plans to implement community health promotion strategies that are based on national recommendations. The Guidelines for Disability Inclusion can also be used to evaluate whether plans and programs effectively include people with disabilities.
The criteria approved by the national panel of experts to approve or deny each of the guidelines can be seen in Figure 2.
Figure 2: Criteria Approved by Expert Panel
*The guidelines were unanimously approved by the expert panel, using the following criteria:
| Criterion | Description |
| Reach | The guideline is likely to affect a large percentage of the target population. |
| Sustainability | The guideline has potential to endure over time. |
| Transferability | The guideline can be implemented in communities that differ in size, resources, and demographics. |
| Utility | The guideline will assist state organizations and others to plan and monitor community-level programs and strategies. |
| Feasibility | Required knowledge, skills, staff, equipment, or other resources to implement the guideline are not exceedingly prohibitive to putting it in place for the target population. |
| Inclusion | The guideline is likely to promote inclusion of people with a range of different disabilities. |
The national panel of experts included:
- Mary Andrus – Assistant Vice President, Government Relations, Easter Seals
- Linda Bandini – Professor, University of Massachusetts
- Michelle Camicia – Director, Rehabilitation Operations, Kaiser Foundation Rehabilitation Center
- Jayne Greenberg – Miami Dade County Schools
- Erica C. Jones – Executive Director of the Pacific ADA Center
- June Kailes – Disability Policy Consultant and Adjunct Associate Professor and the Associate Director of the Center for Disability and the Health Policy at Western University of Health Sciences, Pomona, California
- Barbara Kornblau – Health Policy Consultant
- Jennifer Li and Sarah Yates – National Association of City and County Health Officers (NACCHO)
- Teresa Pagelow – Director of the State Office of Disability and Health in New York
- Clarke Ross – American Association for Health and Disability (AAHD)
- Jeff Underwood – President and CEO, Lakeshore Foundation and former state senator and USOC Paralympic Advisory Council member
- Sandra Viera – Prevention Institute
Additional Information
Development and approval process
We reviewed the literature that was most pertinent to the development of guidelines and criteria for inclusion of people with disabilities (The Agree Next Steps Consortium, 2009; DRRPII Adaptation: National Institute on Disability and Rehabilitation Research; Drum, Peterson, Culley, Krahn, Heller, Kimpton, McCubbin, Rimmer, Seekins, Susuki &, White, 2009; Kraus, Richards, Hong &Ilog, 2012). The literature review also included a wide range of materials related to national strategies in physical activity, nutrition, and obesity, the most relevant of which are included in the Reference section (CDC Healthy Communities Program, 2011; CDC Community Prevention Guide, 2013; Khan, Sobush, Keener, Goodman, Lowry, Kakietek, & Zaro, 2009). In addition, we reviewed many examples of current state and local policies and programs in the areas of physical activity, nutrition, and obesity so that we could identify issues and concerns related to disability inclusion. On the basis of the literature review, we developed a set of draft proposed guidelines and implementation steps which were then reviewed, refined, and approved by the expert panel
Review, recommendations, and approval by the expert panel included the following steps:
1. Panel members reviewed the proposed guidelines and completed an online survey about the importance of the guidelines and usefulness of implementation steps. The panel provided detailed quantitative and qualitative feedback on the guidelines, as well as guidance about the implementation steps which will be especially valuable in development of a tool kit, scheduled for the second year of the project.
2. We refined the guidelines based on survey results, and sent the revised guidelines and criteria for their evaluation to the panel for review.
3. In meetings on April 1 and 3, 2013, the panel members reviewed and approved the criteria for evaluating the guidelines. Their discussions of the guidelines led to additional refinement.
4. The panel members unanimously approved the Guidelines for Disability Inclusion.
References
The Agree Next Steps Consortium (2009). Appraisal of Guidelines for Research and Evaluation II (Agree II). http://www.agreetrust.org/.
Centers for Disease Control and Prevention (CDC) Healthy Communities Program (2011). Strive to implement high-impact policies.
Centers for Disease Control and Prevention (CDC) Guide to Community Preventive Services (2013). Available at: http://www.thecommunityguide.org/index.html
DRRPII Adaptation: National Institute on Disability and Rehabilitation Research, Grant #H133A120102 (PI, J. Rimmer), Obesity and Disability Rehabilitation Research Project
Drum CE, Peterson JJ, Culley C, Krahn G, Heller T, Kimpton T, McCubbin T, Rimmer J, Seekins T, Susuki R, White GW. (2009). Guidelines and criteria for the implementation of community-based health promotion programs for individuals with disabilities. American Journal of Health Promotion, 24(2): 93-101.
Khan LK, Sobush K, Keener D, Goodman K, Lowry A, Kakietek J, Zaro S. (2009). Recommended community strategies and measurements to prevent obesity in the United States. Mortality and Morbidity Weekly Report, National Center for Chronic Disease Prevention and Health Promotion, CDC. Available at: http://www.cdc.gov/mmwr/preview/mmwrhtml/rr5807a1.htm?awesm=r3X&s_cid=rr5807a1_x&utm_campaign=andy&utm_medium=awe.sm-copypaste&utm_source=direct-awe.sm&utm_content=bookmarklet-copypaste
Kraus LE, Richards TA, Hong L, Ilog L. (2012). Report on the applicability of the Guide to Community Prevention Services to people with disabilities. Center on Disability at the Public Health Institute