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Behavioral issues with eating are among the most common causes of death in individuals with IDD and are also some of the most difficult to change. Statistics and research specific to this issue are quite difficult to track down, but in piecing together information from different sources it is estimated that as many as 25% of accidental deaths in this population occur as the result of unsafe eating patterns that resulted in choking.1 Statistics regarding behavior-related choking incidents and other eating-related injurious behaviors resulting in hospitalization, illness or injures requiring medical treatment are even more difficult to locate. Presumably these are even higher than the number of deaths. This is clearly an issue that needs to be addressed in order to protect the safety of individuals we serve to help them thrive in less restrictive environments.

Dangerous eating behaviors include eating too fast, taking bites that are too large, stuffing too much food into the mouth, intentionally ingesting non-food items (PICA) or food items that are unfit for consumption. Other behaviorally-driven eating concerns include individuals eating spoiled or otherwise contaminated food from garbage cans, dumpsters, off sidewalks (loaded with ants), foods that are frozen or boiling hot or food consumed in amounts far too large for a normal stomach to hold.

Recognize and acknowledge that there is a problem: If a situation looks dangerous it probably is.

Dangerous behavior-related eating patterns may be seen at a higher frequency in individuals with Prader Willi Syndrome or autism, among others. They can also be learned patterns and are frequently associated with a history of living in large, congregate-care facilities, where residents might have been required to scarf down their food very quickly to avoid losing it to their peers. Questionable eating habits that were not addressed earlier in life can become increasingly dangerous as individuals begin to have age-related difficulties with swallowing.

Unsafe eating patterns are some of the most difficult behavioral issues to correct. In fact, many individuals will never be free of the need for support or supervision when it comes to eating. There are several steps that must be taken in order to ensure the safety of individuals with these types of challenges.

  • Recognize and acknowledge that there is a problem: If a situation looks dangerous it probably is. This sounds overly-simplistic, but some pretty horrific eating patterns persist without intervention with family members or support staff standing by saying, “Yeah, it’s pretty out there, but he’s always done it and doesn’t seem to have a problem.” Words to cringe by!
  • Train and educate: Caretakers, whether they be support staff or family members need to have information and skills to recognize when there is a problem. Some of the signs of an obstructed airway are subtle. They can include swallowing several times after taking a bite, excess salivation, food coming back through the mouth or nose, swallowing several sips of liquid after a bite or refusing to eat.
  • Be vigilant about interventions: Not sometimes, not usually…ALWAYS. There are many ways to address behavioral issues with eating. Many of them require enhanced supervision or support around mealtimes or in settings where the person may have access to unsafe items. In some cases access to unsafe items needs to be restricted. In many cases where death or injury has occurred interventions were discussed but not followed up on, relaxed in an unusual setting or circumstance or followed by one provider but not another. New staff members who work with individuals with identified eating challenges need to be fully trained BEFORE assuming responsibility for their care. The real danger of these issues is that it only takes a brief moment for disaster to occur.

This is a difficult problem to deal with and one that is virtually impossible to eliminate. With continuous, appropriate vigilance it can be supported, allowing people to continue to enjoy the many benefits of living in less restrictive settings.

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