Protective Equipment and Persons with IDD
Although people might be getting a little weary of hearing about the COVID-19 pandemic, it is still a very real issue and we need to remain highly vigilant. That includes wearing protective equipment when appropriate. When should masks be worn and how do you safely put them on and off? The World Health Organization (WHO) offers simplistic and helpful demonstrations and explanations regarding masks.
It is difficult for many people to wear these articles. If a person wears glasses and the mask is not put on appropriately, it steams them up. Or, the mask slips down on the face and it must be retied or adjusted. It could just feel very odd so that people are constantly trying to adjust it for comfort. Maybe the person is claustrophobic and has a feeling of suffocation if they can’t breathe in fresh air. What if the person with I/DD is fabric-sensitive, smell or touch sensitive? What if they are simply noncompliant? These are challenges that support persons are dealing with every day.
Here are a few things you can try:
1) Try putting masks on stuffed animals. Let the person put the mask on the toy and then apply their own mask or allow staff to apply it. The support person may have to put it on the stuffed animal. Leave it on the animal for a while so that they can see it isn’t bothered by wearing a mask. It may take several times of putting the mask on the stuffed animal before the person will allow a support person to put a mask on their face or put the mask on their own face.
2) If fabric masks are being used, have several pieces of fabric options and allow the person to choose what they want. Try to have different textures, colors and prints available. Select elastic that is not too tight so that it won’t hurt their ears. If elastic is not available, use large hair ties. The fluffy hair ties that are elastic may be used, too. Try masks with no elastic but instead have simple ties that go around the head. Again, allow them to select the elastic or ties.
3) Let them have a mask to carry around and hold and feel. Let the person try it on and take it off. It doesn’t matter if they destroy it, give them another type to play with and see if there is more success with it. Slowly try to desensitize. Let them wear a mask for ten seconds, then take it off. You may even have to start with a shorter time and add a second or two each time you put the mask on them. You can even make an activity out of it. “Mask time” is when everyone can demonstrate putting on and taking off a mask appropriately. You may try a reward system after they wear the mask for a while such as picking a special treat, a trip to the park, FaceTiming with family (make sure they have the mask on and give the person a lot of praise) or simply spending 1:1 time with their favorite staff.
4) Let them personalize their mask. Again, allow them to select the fabric. If using disposable masks give them a Sharpie® and let them draw on the mask and make it theirs. Provide different stencils that the support persons can help them with, such as cars, butterflies or action figures. Find pictures in magazines and hot glue to the mask. (Be very careful if you are using a hot glue gun near the person! Not only the glue gun, but the hot glue itself can burn the person.) Allow them to make two masks so they can choose which one to wear. This can also be done on a fabric mask, but if drawing, they are stuck with only one or two drawings.
5) The support person can also go to a party supply store, or again use a stencil, and get some crazy big glasses. Hot glue the mask to the glasses making sure the glasses won’t interfere with the fit. This can be done with cloth or disposable masks. If the glasses interfere too much with the fit, make some using a stencil and heavy construction paper. The person can select how they want their glasses to look and again they personalize with drawings or pictures. Be mindful the the glasses do not obscure the person’s vision.
6) The staff can have a “Western” time. Everyone puts on a cowboy hat and has a bandana. Watch old Westerns where many of the characters wear a bandana mask. Allow the person to try a simple bandana mask. This is much better than wearing nothing. (I would suggest you avoid The Lone Ranger TV series, because the main character only wears a mask that covers the eyes and obviously that would not be effective against COVID-19.)
Suggested Old Western Series:
a. Bonanza
b. Roy Rogers
c. Gunsmoke
d. Hop Along Cassidy
e. The Rifleman
f. Wagon Train
g. Maverick
The shows can often be found on ME TV or H and I TV channels. If you find some that are appropriate, DVR them and you will always have something to watch.
I hope this gives you some suggestions that might not have been tried. Even if all the people in support have no problem with masks, most of these suggestions can still be used to personalize their masks. All any of us can do is hope this nasty virus leaves us soon!
By Sherry Neal, RN-BC, CDDN
Aspiration is usually listed as the most common cause of death in institutional settings, including nursing homes and large group care settings for people with IDD. Aspiration pneumonia is a common discharge diagnosis following hospitalization. It occurs when bits of food or liquids make their way into the windpipe instead of into the esophagus where it should be. Aspiration can occur during the swallowing process, but also occurs when stomach contents come back up the esophagus as a result of vomiting or gastroesophageal reflux. It often begins subtly and damages increasing portions of the lungs. Feeding tubes, which carry their own increased risks, are often utilized in an attempt to bypass the swallowing process and reduce aspiration episodes, but are not always entirely effective. Other factors which may lead to aspiration are poor body positioning, particularly in individuals who cannot control their own movements well, and behavioral issues related to eating. One of the most common signs of aspiration is a cough noted during eating or drinking or shortly thereafter. When a cough is noted under these conditions an evaluation should be initiated to look for possible aspiration.
Constipation and Bowel Obstruction are almost always at the top of the list of causes of illness and preventable death in people with IDD. One of the most important root causes of bowel obstruction is the use of multiple drugs with constipating side effects. Add to this the fact that most of us have dietary habits that contribute to the problem, chief among them, diets that are low in fiber and adequate fluids. Lack of mobility is a contributing factor to constipation, as well. We often see people on one or more medications to help improve elimination, but ironically, drugs intended to improve constipation often place the person at higher risk for impaired bowel function. Adequate active movement or exercise is also important to bowel function. Controlling these factors, along with training caretakers to recognize the signs and symptoms of bowel problems at the earliest moment can greatly reduce occurrences of illness or death from bowel obstruction.
Seizure deaths can occur from episodes of prolonged, uncontrolled seizures as well as something called SUDEP or sudden unexplained death in epilepsy. For reasons that medical science has yet to explain, people who have epilepsy have a higher chance of dying suddenly unrelated to actual seizure activity. Drug toxicity and medication side effects can further impact the health and well-being of people who takethese medications, and the balance between adequately controlling someone’s seizures and the risk of adverse drug reactions must always be at the forefront of the treatment plan. Life expectancy for people with active seizure disorders has been shown to be up to 10 years less than those without epilepsy.
Dehydration is all too common and easily preventable in most cases. People who do not swallow well are particularly likely to refuse fluids or indicate fear when they get them, often resulting in dehydration. Dehydration is also likely when fluids are restricted in an attempt to prevent incontinence, not realizing that lack of fluids can contribute to constipation and increased seizure frequency, not to mention drug toxicity and other health problems. Awareness of fluid loss through sweating in warm and humid conditions or from loss due to vomiting or persistently elevated blood glucose levels in people with diabetes is important, as well. The presence of fever also increases a person’s fluid needs. Anyone supporting people with IDD should be aware of a person’s fluid requirements and work to ensure that they receive the necessary fluids to prevent dehydration.
Sepsis, sometimes called “the silent killer” is an ever-present threat to all. Sepsis is a condition which results from a significant infection in the bloodstream and the body’s response to that infection. Early signs of sepsis include fever, chills, rapid heart rate, low blood pressure and mental status changes. Some of these symptoms are common with may illnesses, but one’s index of suspicion should remain high for worsening signs of a serious infection and referral for a medical evaluation should be considered earlier rather than later. The risk of death increases significantly for each hour that passes when sepsis is left untreated. Remember, “When in doubt, send them out!”
Gastroesophageal reflux disease (GERD) is the backing up of stomach contents, including acid, into the esophagus. GERD is frequently undiagnosed in many people, including those without disabilities, until major harm has been done to the bottom of the esophagus. Medications that cause constipation also contribute to GERD. Individuals who are overweight, particularly when they carry excess weight around the abdomen or wear clothing that is too tight have a higher risk of GERD. Ill-advised dietary choices, immobility and improper positioning also contribute greatly to the incidence of GERD. As this disorder continues without treatment, discreet or frank aspiration, life-threatening gastrointestinal bleeding and esophageal cancer become increasingly common. Recognizing signs of GERD, especially in people who do not communicate with words, is important to reduce the risks associated with this condition. People who exhibit food refusal, coughing when lying down, physical or verbal aggression particularly around meal times, or distress in the middle of the night may be telling you that they are experiencing GERD. Pica, a behavior where people eat things of non-nutritional value, may also be a sign of GERD and should prompt an evaluation.
