Frontline Initiative: Health and Wellness

Time in a swimming pool is so good for people's health and wellness in so many ways!

When people talk about health and wellness, many people’s minds immediately go to an exercise and diet program. While these are very important, they are only one piece of the puzzle. There are other factors to consider, including personal preference. Personal preferences are important considerations that impact health and wellness for everyone, but they may be even more important when supporting people with disabilities. People with intellectual and developmental disabilities (IDD) are more likely to have health issues than people without IDD. These health issues include undiagnosed hearing and vision impairments, obesity, poor dental health, diabetes, arthritis, and cardiovascular diseases such as asthma.

At this point, you are probably wondering why. After all, people with IDD have direct support professionals (DSPs), parents, or any other friends or family who closely support them. So, why are personal preferences so important for the health and wellness of people with IDD? It boils down to the key to interacting with anyone: Who am I dealing with? And “who” is more than a name. “Who” is their preferences and dislikes. What makes them feel safe? These are questions you learn to answer over time. DSPs have a really important role and perspective in knowing about and supporting these things. Suppose a person has anxiety when visiting their doctor. Instead of panicking before the appointment, why not spend time in their safe environment, practicing? Do loud noises bother them? Get noise-canceling headphones. Try them out in a familiar place, like the grocery store or church. Have the person pack their favorite snack to help them feel more in control. Or bring a tablet or other favorite item to distract them from what causes their anxiety. This sounds simple enough, right?

Wrong. We all have established coping mechanisms. DSPs especially, have spent so many days finding ways to “get by.” Sometimes we get stuck in survival mode. Coping mechanisms can be difficult to unlearn. This is where your knowledge of the person you support comes in. What can you use to help others build that relationship of respect and trust? This is the foundation upon which to build. So, you have your foundation. Now what?

Supporting at Medical Appointments

Doctors and other health professionals are important in promoting physical activity among their adult patients with disabilities. Adults with disabilities were 82% more likely to be physically active if their doctor recommended it than if they did not get a doctor’s recommendation (Centers for Disease Control and Prevention, 2021). Physical activity guidelines are for everybody. As a DSP, you may be likely to attend appointments with the people you support. Ensure that doctors ask about physical activity, discuss barriers to it, and recommend physical activity options. If more help is needed, they need to refer patients to resources and programs.

Sometimes people with disabilities need an advocate present who knows them. Many behaviors can be misinterpreted. For example, a person may have scabs on their skin that are the result of anxious scratching rather than dry skin. Treating dry skin rather than anxiety will not solve the problem. Minor issues, if mistreated, can compound over time. They need to get to the root of the issue.

When supporting people at medical appointments, you can ensure that the following things take place:

• Support respectful communication. Ensure that the person you support and the doctor have what they need to communicate. For example, make sure the provider knows if the person needs extra time to speak or act. Encourage people who struggle with communication to write down their questions and concerns before the visit.
• Make sure that instructions and resources given by the doctor are in writing. Even better, make sure that these are in accessible formats for the person you support.
• Try to identify with the provider resources that help them better understand their medical conditions, even if the person doesn’t request it.
• Make sure people have clear instructions for return visits or to see another medical provider (e.g., for follow-up, for specific symptoms, for specialized health care).
• Help manage any barriers that may arise related to challenging behavior, communication limitations, and physical accessibility. Plan ahead.

Don’t be discouraged if you find yourself failing repeatedly. There is so much trial and error in building any relationship. Building a professional relationship with people with disabilities—and possible trauma—can make each day with the same person new and different. Build on common interests, even if they are past interests. If a person is anxious or agitated, wait for the person to calm down before trying to give or receive information.

Building a Diet and Exercise Plan

When building a diet and exercise plan, support the person’s preferences. Get things in writing from the doctor and save them. Remind the person that they have your complete support, even when it’s hard. Keep in mind their interests: Do they love music and dancing? Try Zumba. Do they love animals? Have them volunteer at a shelter, walking dogs or cleaning kennels—any movement is better than no movement! Got a gamer who never wants to leave the chair? Go together to pick out a game to play together that requires movement—now you’re bonding, too. Bad arthritis or painful joints? Let’s try swimming, even if we just start by kicking our legs on the steps. The key is to find what they like. And you can do it with them.

Eating Healthy Starts with a Grocery List

At the start of the COVID-19 pandemic, we at St. Francis Ministries realized we needed to change how we got groceries. We didn’t want DSPs or people supported to risk getting COVID when going to the grocery store. We wanted to maintain support quality. The solution was online grocery shopping. We assisted people in making their grocery lists and helped them set up accounts so they could track their orders if they wished. We also created a grocery list with only healthy options, but left room for each person to write in anything else they wanted. This provided opportunities for people we support to learn about healthy eating and other considerations like diet and budget. Now that people can go back to the grocery store, we still make shopping lists. We can even arrange the list according to the layout of our local grocery store. This reduces anxiety for some.

This focus on education and healthy food has opened wonderful opportunities for people we support to make healthy decisions. We recently went to a Mardi Gras cookout and parade. We had hamburgers, hot dogs, baked beans, potato salad, chips, and king cake. At the parade afterward, people were tossed various types of “throws” and were given white lunch bags of candy and treats. We support several diabetic people, so there were diet concerns. One person I support stopped me after the parade, and said, “Hey, Mrs. Sara Anne! I just want you to know that I got that bag of candy and I looked at that label and saw 30 grams of sugar! I said, ‘Whew boy! Now Jesus knows I can’t have that much sugar,’ so… I GAVE THAT WHOLE SUCKER AWAY!! Elisha [my DSP] is teaching me label-reading and SPIT on that much sugar!”

This illustrates something that is super important—the person learned how to read labels with their DSP. Most importantly, the person is proud of their choice. This skill could have a life-changing impact. As a DSP, your role is to make the people you support feel safe, understood, independent, and have a life that focuses on their abilities. You can support a holistic sense of health and wellness with them. Diet and exercise are just the tip of the iceberg.

References

Centers for Disease Control and Prevention. (August 5, 2021). Retrieved from CDC.gov: https://www.cdc.gov/ncbddd/disabilityandhealth/pa.html

Centers for Disease Control and Prevention Vital Signs. Available at www.cdc.gov/vitalsigns/disabilities May 2014.

Carroll D, Courtney-Long E, Stevens A, Sloan M, Lullo C, Visser S, Fox M, Armour B, Campbell V, Brown D, and Dorn, J. Disability and Physical Activity – United States, 2009-2012. MMWR. 2014.

Physical Activity Guidelines for Americans, 2nd edition. Washington, DC: US Department of Health and Human Services; 2018. Available at https://health.gov/paguidelines/second-edition/pdf/Physical_Activity_Guidelines_2nd_edition.pdfpdf iconexternal icon

Rimmer JH, Riley B, Wang E, Rauworth A, Jurkowski J. Physical activity participation among persons with disabilities: barriers and facilitators. Am J Prev Med 2004;26:419–25.

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