Behavior: What Could It Mean?

Often when we hear “behavior” we roll our eyes, knowing we have to deal with Janice and her behavior of the day. But behavior can be so many different things. We all display it, often we use it instead of words. Everyone knows what screaming and stomping the floor signifies. A definition of behavior is: the way in which an animal or person acts in response to a particular situation or stimulus.

Instead of labeling people as having bad or uncontrolled behavior, maybe we should play detective. If a person cannot use words to communicate, behavior is often their only means of getting their point across. We all communicate non-verbally and behavior is often how we do that.

If a person cannot use words to communicate, behavior is often their only means of getting their point across.

This non-verbal response is so often a form of communication. It is so frustrating for the person to train every new staff member. When traveling coast to coast training, I ask if anyone has turnover in their agency and every hand goes up! The person being supported is constantly training new staff about what they are attempting to communicate, and it really is a pain in the rear for them! When you discover what a certain behavior is portraying, write it down somewhere. If the person becomes very confused and wanders every time they have a UTI, write it down somewhere. This way we can get the person treatment earlier and eliminate the behavior.

What if the person engages in head banging when the allergy counts are high, and they have a terrific sinus headache? Again, write it down somewhere accessible. Anytime someone new comes in to work, they could look at the documentation and the light bulb would immediately come on instead of the person having to suffer for days or months and be put on multiple psychotropic meds because of “behavior”.

Having a “behavior” should not mean automatically being put on more medications. It should kick in an investigative response to see what it means.

If you are interested in learning more about behaviors and how they are a form of communication, join the HRS webinar on March 14 “Actions Speak Louder than Words”. It will help you to perform your job better!

What is Sepsis?

To put it simply sepsis is a term used to describe a serious illness characterized by a bacterial infection in the bloodstream. You might’ve heard the term blood poisoning, that’s another term for sepsis.

Sources of sepsis are urinary tract infection and pneumonia. That’s why it’s so important to recognize the signs of these conditions and get them treated early. Earlier treatment of these and other infections may prevent someone from becoming septic.

If someone is getting septic, you might see them looking pale, sweaty, their heart rate may go up, they could be breathing harder, weak and confused. You might also see blotchiness of their skin and a high fever.

Sepsis is a medical emergency and needs to be treated immediately. Every hour that treatment is delayed increases the risk of death by 10 percent. To use a phrase you probably heard In other webinars and e-learning modules by HRS U “when in doubt, send them out!” That’s an important thing to remember.

Join us for our upcoming webinar “The Fatal Five, Plus!”. In that webinar you’ll learn about sepsis and several other very important medical conditions that are common in people with intellectual and developmental disabilities. You’ll learn how to recognize them early and help people that you support live happier and healthier lives.

Nutritional Supports

Nutritional supports take a very broad look at the process of eating and digestion. Many people that are receiving services require some assistance with the intake of food. They may need their food specially prepared or need assistance with eating. Safety is the biggest concern as persons become more dependent on others for eating.

Mealtimes and eating may become unpleasant for a person. This may be due to pain or discomfort, swallowing difficulties or even that they have had to have a feeding tube placed and can no longer enjoy the taste of food. Whatever is causing that person to find meals disagreeable should be investigated and the cause eliminated if possible. Drill down to find out if the problem is related to the intake of food, the processing or absorption of the food or even the excretion of waste.

Safety is the biggest concern as persons become more dependent on others for eating.

When we look at the intake of food, we are focusing on getting the food safely in the mouth, down the throat and esophagus and into the stomach. There are many things that can go wrong here because of the high level of muscle and nervous system coordination that is required to get the food from plate to the stomach. Difficulty swallowing and aspiration is one of the big concerns.

If the person does not have good lip closure, strong tongue control or adequate nerve supply to the throat, choking and aspiration are a real threat to the person’s life and overall health. If the muscle at the top of the stomach doesn’t close well, reflux becomes an issue. When the person has significant heartburn and stomach pain, they don’t feel very much like eating.

Processing of food and absorption of nutrients can be problematic as well. It takes 4 to 6 hours for food to completely be digested enough to leave the stomach. High fat meals require the longest time. Often positioning a person on their right side with their trunk and head elevated at least 30 degrees helps the stomach to empty. This also may help to reduce the frequency of reflux by helping the stomach to drain rather than push food back up into the esophagus.

The formation and elimination of bowel movements certainly causes difficulties for people that we serve. This doesn’t even scratch the surface of things that can cause difficulties at mealtimes. The important thing to be aware of is, does the person have a problem with intake, processing, absorption or elimination? Once the problem is identified always take action to see what you can do to resolve the problem to make eating and mealtimes more pleasurable.

We have discussed the problems with constipation and bowel obstructions in the past. I’m sure we will produce more articles on these topics in the future because it is such a prevalent issue. If you would like to read any of those historical articles, go to and click “Article Library” at the bottom right of the page.

Physical & Nutritional Supports

For most all of us, getting up and eating our daily meals, plus a few snacks here and there, is something we take for granted. Running through a drive-thru window for our favorite beverage on the way to work is routine. But what if our meals had to come through a tube, or be pureed or liquids thickened? That would certainly turn our daily routine upside down!

As service providers, some of the people you provide supports for receive tube feedings or their food and fluids are otherwise specially prepared. This is their routine. Doesn’t sound very appetizing, does it? What if you could help a person MAYBE eat a little more independently or have a more typical presentation of their meals and drinks? I think you would agree that would be the better way to go. Physical and nutritional supports may help you do that.

What if you could help a person MAYBE eat a little more independently or have a more typical presentation of their meals and drinks?

Don’t just think of physical supports as a specialized chair or positioning device. Physical supports are a whole range of positions that a person can assume throughout the 24-hour day to help assist that person move better. It may consist of placing a person in a position where they are required to reach out for an item or loosen up a tight joint. This might allow him or her to eventually use that arm to eat by being able to reach their utensils or a glass of fluid. As a caregiver, you may be trained in special techniques to help control jaw movement or teach a person to drink from a straw. These special positions and procedures are often used by physical and occupational therapists to achieve a more independent eating style for the person.

There are many ways that therapists can assist a person with eating. Therapeutic positioning is one of the means they use to help a person gain more control. Therapeutic positioning involves putting a person into a “working” position. A working position is one where muscles, bones and joints must “work” to hold them in that position. These positions help reform those connections and the movement ability. A person should be in working positions throughout the entire day. The appropriate therapist prescribes what those positions should look like.

Therapists may also help persons with adaptive feeding methods or other physical supports. There are many eating utensils that enable a person to eat more independently. You may be familiar with some items such as built up handles on a spoon or a rocker knife, but there are a lot of other devices available. Sometimes, a person could eat more by mouth with special presentation techniques. The therapist can determine if they have one side of the mouth that is stronger than the other and determine where food needs to be placed on the tongue. Another method is to trigger reflexes of the lips in order for a person to pull food off of a utensil.

Physical Supports

When you think of physical supports, do you only think of things like wedges, custom fit wheel chairs and seat belts? If that’s the case, you are missing out on a lot of things you can do to improve the lives of the people you serve.

Physical Supports allows you to provide the external supports necessary throughout the 24-hour day to help the person become more functional. Think about the supports you need throughout the day. Are you a little on the shorter side and need someone else to reach the top shelf of the cabinet? What about an extra pillow at night to prop up your arm so it doesn’t go to sleep? Glasses in order to read? These are very minor, but they are still physical supports.

When we are on a diet, we don’t just diet 3 days a week or only at meals then binge the rest of the time. It’s the same principle when a person is getting physical therapy: we can’t just let them be inactive and have therapy 3 times a week. During the time they are not actively receiving P.T. we can be placing the person in ACTIVE or WORKING positions. If a dead person could maintain the position, it is not an “active” or “working” position. Just lying on your side is not an active position. Putting someone into a prone on forearms position so that they have to hold their head up is a working position.

Physical Supports allows you to provide the external supports necessary throughout the 24-hour day to help the person become more functional.

We often can see these positions in infants as they develop. The infant will start raising its arms up or holding up their head on their own. They can’t hold these positions for long until they build up strength. They are building against gravity. A person that has a contracture in an elbow for instance, may have their arm placed in a working position that allows gravitational force to help move the arm down into a more usable position.

There are also physical supports that are not active. Positioning a person to prevent pressure injuries is a physical support. Sometimes we do it with special equipment, sometimes it is just with bed pillows. Just know that we are positioning them for prevention when they are in EVERY position throughout their entire day, not just at night.

Physical supports can help prevent pneumonia, help with bowel function, keep skin healthy, help the person to become more independent and many, many other things. Please keep in mind that even the most minor change can make an enormous difference in someone’s life. 

Using Standardized Tools

Nurses are very familiar with evidence-based practice. It is using the most recent and best evidence in the decision-making process for patient care. Part of evidence-based practice is using the most current standardized tools for assessment or screenings in determining individualized risks.

There are many assessments and screenings that are completed on individuals with IDD. Some are completed by behavior analysts, some by QDDPs and yet others by nurses or other members of the interdisciplinary team. It is important that standardized assessments/screenings be used. Utilizing a standardized assessment or screening means it has been tested and the results have been validated. A validated tool means it really does what it is supposed to do. If a tool has been validated to screen for depression, the result truly determines if the person meets criteria for depression or not.

Interrater reliability is also a key factor to look for when utilizing any assessment/screen. If Person A screens Individual XYZ, and Person B also screens that same individual, the results should be the same. Interrater reliability means that two people given the same information should get the same results. This shows the tool is not open to wide interpretation.

There are many standardized tools that are used in the field of IDD. Many we know by the acronyms only and if we do not personally administer the tools, we may not know what those abbreviations stand for or what the tools are even used for.

A validated tool means it really does what it is supposed to do. If a tool has been validated to screen for depression, the result truly determines if the person meets criteria for depression or not.

Here are some of the common ones:

  • Abnormal Involuntary Movement Scale (AIMS): A scale used to determine if signs or symptoms of tardive dyskinesia are present. Get AIMS Tool
  • Braden Scale: An assessment to determine a person’s risk for developing pressure ulcers. It evaluates 6 areas that contribute to risk. Get Braden Scale
  • Bristol Stool Chart: A chart of standard descriptions for bowel movements. It describes seven different types of bowel movements and indicates what constipation, diarrhea and normal stool looks like. Get Bristol Stool Chart
  • Dyskinesia Identification System Condensed User Scale (DISCUS): Another scale used to determine if signs or symptoms of tardive dyskinesia are present. Get the DISCUS Tool
  • Health Risk Screening Tool (HRST): A screening tool to determine individual health risk and identify early health destabilization. See HRST Tool
  • Inventory for Client and Agency Planning (ICAP): Measures motor skills, personal living skills, community living skills, social and communication skills, and broad independence as well as eight categories of maladaptive behavior. See ICAP Tool
  • Monitoring of Side Effects Scale (MOSES) – Measures medication side effects, particularly psychiatric medications. Get MOSES Tool
  • Supports Intensity Scale-A (SIS-A): Measures the individual’s support needs in personal, work-related, and social activities, in order to identify and describe the types and intensity of the supports an individual requires. See SIS Tool

This short list describes just some of the standardized tools that you may find useful (or are used) in your setting. Hopefully this helps untangle all those abbreviations!

Quality Improvement

Quality – what is it? Most people will say they can’t describe or define it, but they know it when they see it. Do you know what quality is? Do you practice continuous quality improvement in your daily work? Does your agency have a formal program? Whew, that’s a lot of questions, let’s see if we can answer some of them.

“Quality” as defined by the Merriam Webster dictionary is “a degree of excellence.” In the it is, “a measure of excellence or a state of being free from defects, deficiencies and significant variations.” Depending on our own personal standards, excellence is nebulous and may be very individualized. What we are striving for is excellence in providing supports to individuals who are physically or mentally disabled or challenged. We want both quality of life and quality of health. If we work hard enough and stay aware, we can achieve both.

In all our everyday activities, whether at work or in our personal lives, we should always practice continuous quality improvement. Being better today than yesterday is sometimes a struggle. Maybe you’re happy with the status quo and don’t want to change. There is an old saying that, “no one likes change except a baby with a dirty diaper”. Change is difficult, it takes us out of our comfort zones sometimes. But if you make small, slow changes, it can be easy and fun.

In all our everyday activities, whether at work or in our personal lives, we should always practice continuous quality improvement.

The first thing to practicing quality improvement is to recognize that change is needed. Some agencies are still not practicing person centered thinking or using current terminology. I know that politically-correct terms seem to alter daily, but you can always ask a person what they wish to be called, or how they want to be addressed. If you are still using the terminology “mental retardation,” it is time for a change. The correct overall categorical terminology is “intellectually disabled” or “intellectually and developmentally disabled.” There is a federal law that mandates that terminology replaces the term ‘mental retardation’ with “intellectual disability” (federal statute, Public Law 111-256, Rosa’s law.) You can start your quality change by teaching others about this wording. Is speaking out to others not your thing? Well, start with one person and tell them. Then read up on why it is important. Then tell a group of two people, then continue to spread the word and grow from there.

Another quality improvement may be looking at meal practices. Is there a nutritious meal planned? Does it meet the current “my plate” guidelines? If not, how can you change that? What are ways that you can make eating salads and vegetables more appealing? Read and research to get some ideas and tips. Many of you are on Facebook or Pinterest or Twitter. Follow some social media pages related to nutrition. Save or write down some of the recipes posted. For example, I found an excellent recipe for pizza crust using cauliflower and parmesan cheese. A coworker’s four-year-old child HATES vegetables and yet ate almost a whole pizza with this crust. Someone hate salads? Add tomatoes and yellow or orange peppers strips to liven it up- adding color makes food more appealing. Research the “my plate” guidelines at

These are just some examples but there are many ways you can take steps to improve the quality of your own work. Be the first and set the example! Step up and make the necessary changes to improve, even if it may be uncomfortable.

Observe, Decide, Act

These three words – observe, decide, act – don’t seem like much, but we perform these functions constantly without thinking. If we observe a child attempting to touch a hot surface, we immediately decide they are going to get injured and act almost simultaneously by pulling them away; it is almost an automatic response.

In our daily work with individuals with IDD, we often observe something that may be different, such as the way a person may be acting, or their appetite is off, or their bowel movements look unusual. Often, unfortunately, we do not act on that observation which can lead to consequences.

Caregivers may inadvertently contribute to the problem by taking steps to combat those little things that make day-to-day life somewhat unpleasant. Medications to combat drooling and withholding fluids for several hours before bedtime are two practices that can lead to an enhanced risk of dehydration. Drooling may be improved by having the person work with a speech pathologist to treat the root cause of the problem instead of eliminating the symptoms. Swallowing saliva also has a positive effect on the GI tract, reducing the concentration of the gastric contents and helping them to be sluiced from the esophagus back into the stomach. Pushing fluids earlier in the day, using a night time toileting schedule or incontinence briefs can combat bedwetting without depriving the person of essential hydration.

If you don’t know the signs and symptoms of a seizure emergency or a heart attack or aspiration, how will you know when you need to do something?

How do you know when something is different and that you need to do something? First, get to know the individuals you are serving. Everyone has their own little idiosyncrasies: Does Christy always touch the door 3 times before leaving the house? Does she eat one food at a time and doesn’t like to have different foods touch each other? What do her bowel movements look like? How often does she usually urinate during your shift? Knowing the answers to these simple things can help you determine if you need to act on something you have observed. If Christy generally urinates three times during your shift and today she has urinated six times without having had extra fluid, yes, that absolutely needs to be reported and action taken. The action taken may be as simple as calling the nurse and observing Christy more closely. Action may mean a doctor visit. Regardless, this situation should stimulate some response from you.

Documenting what you observe is essential! Leaving a paper trail so that everyone knows what is going on is very helpful. This makes it easy to see when an event first occurred so we can track back to any specific triggers. Documenting also gets the information out of your head and down permanently. We all carry so much knowledge about the individuals we serve in our heads which can’t help anyone else unless shared. Putting it in writing is the best way to share information so that it can be read by everyone providing services to that person so that they become as familiar as you are.

Education of all persons providing supports to an individual is essential. If you don’t know the signs and symptoms of a seizure emergency or a heart attack or aspiration, how will you know when you need to do something? Attend all the training opportunities that you can. Read articles, listen to webinars, attend in-services, ask questions – there are multiple ways you can educate yourself. Always share what you learn with your co-workers or other support team members so that they also become more aware.

Observing an event and deciding to initiate some form of action is integral in your day-to-day work and you do it hundreds of times a day. Ensure you are aware of when you should or need to act. Never be afraid to act, it might save a life.


Most of you know what pica is and have cared for individuals who suffer from this condition. Pica is defined as eating items or substances with no nutritional value. This condition is quite common in very young children and is normal to a degree in that age group. Infants and very young children explore and learn about their world by putting things in their mouths. They see it, taste it and identify the texture. They may also use items for teething. As children grow out of that exploration phase of their life, we also expect to see them grow out of pica behavior.

When pica behavior persists past infancy or very early childhood, we want to look at a couple of different things as the root cause of this behavior. Nutritional compromise is the number one concern in older children or pregnant women. Persons who have anemia, low iron or other deficient minerals in their blood may eat dirt or clay to obtain that nutrient. For some reason, their brain and body are communicating that the nutrient they need may be gotten from these particular sources. Another reason pica may continue is simply overall malnutrition. This can often be seen in cases of neglect when a person is simply not fed enough and they are hungry or being starved. Anything to satisfy that feeling of hunger is better than nothing.

A frequent cause of concern in pica in adults or older children is the possibility of gastrointestinal distress. Persons with gastroesophageal reflux will often display pica behaviors. There are a couple of theories on this. Saliva has a more alkaline nature and stomach contents are much more acidic. One thought is that by eating or even chewing, it causes an increase in saliva production which helps to neutralize the acid that has backed up into the esophagus from the reflux. A second consideration is that the person is trying to find anything to help soothe or ease the discomfort caused by the reflux.

Nutritional compromise is the number one concern in older children or pregnant women.

During the holidays, if you provide services to anyone with pica, it can be a very dangerous time. Eating glass Christmas tree ornaments and Christmas tree lights do not typically have a very good outcome for the person. Stuffed animals, pine cones and garland can cause choking hazards and glitter can cause aspiration issues. Be vigilant in placement of decorations. The person may also need increased supervision or 1:1 observation.

If a person has ingested items, try to find out if it was the potpourri or if they drank the infuser oil. Keep the poison control number handy at all times. Another thing that can occur is for the person not to be able to pass the ingested substance and a bezoar may form. A bezoar is mass of indigestible material that a person cannot pass. It may become hard and must be removed either surgically or via a scope procedure. It may cause a bowel obstruction. Other complications may be perforation of the intestines or stomach with serious complications.

Just always stay vigilant with any individual diagnosed with a pica condition. Their lives often will depend on it.

Tips for Successful Toileting

Before I get too far into this article let me start by saying how remarkably easy it is to get sideways in an activity that is one of the most innately programmed, second only to breathing. Successfully toileting includes recognizing the need to eliminate, knowing where to go and being able to get there, being able to void completely and maintaining good hygiene practices.

Failure to recognize the need to eliminate can be related to issues with disability, particularly those related to the nervous system, aging, medication side effects and damage to the associated organs from trauma. Unexplained or unexpected incontinence (bowel or bladder) is sometimes the first sign of an emerging problem and should be seen as a big red flag. This is an issue that should send care providers on a root-cause hunt.

Bladder or bowel stasis can occur for a variety of physical or physiological reasons. Even diet and activity level have a significant impact. Chronic incontinence can lead to skin breakdown over time in an area that has a large amount of potentially harmful bacteria. Individuals who have undergone one or more catheterization procedures can have issues with urinary tract infection or trauma to the urethra or bladder and should receive additional observation to detect emerging problems.

Successfully toileting includes recognizing the need to eliminate, knowing where to go and being able to get there.

Making it easy for people to get to the restroom when they need to go is a simple way to cut down on toileting problems. They should be in reasonable proximity to a bathroom and should wear clothing they can get in and out of easily. Individuals who have frequent accidents sometimes do better when they wear incontinence briefs or follow a toileting schedule. Do NOT use unreasonable restriction of fluids to prevent urinary incontinence. It can lead to significant levels of dehydration, one of the Fatal Five!

Accidental falls in the restroom are a common occurrence and can be deadly. Grab bars and raised toilet seats make a tremendous difference for people with physical challenges and can help them be safe and independent with toileting tasks. A brief word about raised toilet seats: It is much easier to initiate a bowel movement when the angle between the trunk and thighs is 90 degrees or less. Providing a step stool or other foot support can be extremely helpful for some people. Individuals who require more specialized support should have access to any needed lifting equipment and those supporting their needs should be thoroughly trained to use it safely.

Some diseases are passed from one person to another via exposure to feces, so proper hand washing is an absolute must. It is particularly important when several people live or work in the same place. Many people also need assistance to wipe after using the restroom and to manage menstrual hygiene practices. Several individuals who have an identified behavior of fecal smearing do so because of the need for assistance with hygiene tasks.

With proper identification and support of existing issues most people can be independent and successful with toileting tasks. Also make sure that individuals or those providing assistance report any changes in toileting needs. As we’ve stated several times, early identification can make a dramatic difference to the ultimate outcome.