Diabetes and People with Disabilities
Promoting Inclusion from Referral to Intervention
by: Chris Mackey
According to the Centers for Disease Control and Prevention (CDC) as many as one in four people in the United States has a disability. This amounts to 61 million people having a condition that affects mobility, cognition, hearing, vision, independent living (difficulty doing errands alone,) and/or self-care (difficulty dressing or bathing.) People with disabilities make up the nation’s largest minority group and have the same health needs as those without disabilities. Yet data consistently shows that people with disabilities experience great disparities in health status when compared to those without. When it comes to diabetes, in 2016 adults with disabilities reported having the condition more than twice as often as their peers without disabilities. Additional data has shown that one in three adults with disabilities does not have a regular health care provider, one in three had an unmet medical need because of cost and one in four did not have a check-up in the past year. The rate of diabetes and documented barriers faced by people with disabilities demands an increased focus on accessibility and inclusion across the continuum of diabetes prevention services.
Go Beyond the Accessibility Basics
When we think of inclusion of persons with disabilities many people go directly to the familiar topic of built environment, brick and mortar access. While this is by no means the last step in ensuring access, it is the first critical step. Many of us probably know about basic accessibility features such as accessible parking or we might think of automatic doors and an accessible restroom stall. Perhaps less often you might identify a check-in desk has a lowered section or notice that classroom space has wide aisles. Remember that is not the end of accessibility, especially for health care providers. One of the first things most people do when they visit the doctor is get weighed. Weight control is one of the most important factors in preventing, delaying or managing diabetes along with a host of other chronic conditions. Yet often, particularly for people who ambulate using a wheelchair or scooter getting weighed consists of being asked during the intake process. For any patient, weight is one of those factors that should be measured and monitored objectively. This means having a wheelchair-accessible weight scale. While you might find these scales in certain settings such as rehabilitation facilities, primary care offices and other providers may find that they lack this equipment.
Providers of National Diabetes Prevention Programs (NDPP) or other weight loss interventions should check to see if they have access to a wheelchair-accessible scale. If you are providing an NDPP course in-person, you should try to host the program at a health department or other facility that has an accessible scale on site. If your program is online — which can increase access for persons with disabilities where transportation is a barrier — try and do a search for locations that would have accessible scales, such as rehabilitation hospitals and be sure you thoroughly examine whether or not your online platform meets minimum accessibility standards .
Both the Americans with Disabilities Act (ADA) and Section 504 of the Rehabilitation Act of 1973 require health care and health promotion programs to make accommodations to patients with disabilities. The US Department of Justice has created Access to Medical Care for Patients with Mobility Disabilities to help medical providers understand their obligations for providing accessibility and simple information on how to comply. As you plan for inclusion and accessibility, keep in mind that privately owned programs and practices may be eligible for tax incentives.
Change the Way You Communicate
Providing any inclusive health care or health promotion service means ensuring that individuals with disabilities and caregivers receive health information in accessible, easily digestible forms. Many providers and programs have long-recognized the importance of using plain language, rather than too much medical jargon, and there is widespread recognition of the importance of addressing cultural competence. However, when it comes to adults with disabilities there are additional considerations. What do you do for the patient who can’t see the words on the page? How do you ensure a deaf participant understands what is involved in monitoring his or her physical activity or eating habits? What if an individual can’t fill in—or can’t understand—a diabetes risk assessment tool? Regardless of setting, making accommodations part of regular practice requires staff training and development of policies and procedures that explicitly address inclusion and the needs of persons with disabilities. In health care settings, staff training should include a basic understanding of how to present information about a patient’s health. Many physicians may use the Screen Test Act Today diabetes Patient Risk Assessment to help their patient understand if they are at high risk for developing diabetes. For some individuals, this assessment may be too complicated to understand. For someone with low vision, the text and table may be too difficult to read. Having these limitations doesn’t necessarily mean that you shouldn’t use the tool. You could provide the assessment in large print (18 point or larger sans-serif font) for the patient with low vision or in electronic format. How you present the results, to the adult with an intellectual disability for example, may need to be greatly simplified. Focus on just a few simple concepts at a time and what actions need to be taken. So talking with patients (and caregivers if appropriate) about the need to lose weight, get more physical activity and eat healthy food may require more visuals or helping patients think about a weekly calendar of activities. Effective, inclusive communication resources are plentiful on the internet. One resource is the National Center on Health, Physical Activity and Disability (NCHPAD) inclusive communication tools.
Similarly, if you’re implementing a diabetes prevention or self-management program, strategies such as helping a participant fill in their weight log or action plan and, if appropriate, sharing lesson information with caregivers on whom the participant may rely for transportation, shopping or cooking. If you integrate trips or other group activities into your program, you will need to make sure the venues you go to are accessible for everyone. Of course it’s always important to remember compliance with privacy regulations and as you consider accommodations and adaptations but a good mantra to follow is “Think simple first.”
How do you Push Towards Inclusion?
Inclusion doesn’t happen overnight, it’s something you have to plan for. The important thing to remember is that you don’t have to be the expert. As we’ve alluded to, providing inclusive services requires partnership with disability organizations, individuals, families and caregivers. Through either professional training or lived experience, these individuals or entities have expertise in how to effectively communicate with patients with disabilities and may have additional knowledge in areas such as the aforementioned accessibility and ADA compliance. Whether you’re a provider of health care, nutrition education, or an NDPP provider it’s also critical to have a few reliable resources “in your back pocket” that focus on health promotion for people with disabilities. The National Center on Health, Physical Activity and Disability (NCHPAD) provides a wealth of resources focused on how to adapt physical activity, nutrition and health promotion interventions that include the needs of people with disabilities. One of NCHPAD’s newest resources is Prevent T2 for All, a CDC-approved diabetes prevention Lifestyle Change curriculum that is inclusive of people with sensory and physical disabilities. You can learn more about the program here. The National Center on Birth Defects and Developmental Disabilities at the Centers for Disease Control and Prevention also has data resources and links to potential partner organizations such as its 19 funded State Disability and Health programs and national partners. So plan ahead, plan to partner and be creative!