Category: General/Lifestyle

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.

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. 

About fifteen years ago we were conducting a training session for the service providers of one of our early clients. During the course of the two-day class we learned about a gentleman who liked to remove his athletic socks, stuff them into his mouth as far as they would go and then, when someone came within range, whisk the sock out of its resting place and give the unsuspecting transgressor a soggy “whap!” This behavior was chalked up to being just an unusual thing that this fellow did to amuse himself and it continued undisturbed for several years.

“Well, you know, that’s just the way “they” behave.”

The medical and dental needs of individuals with intellectual and developmental disabilities are often overlooked due to problems with formal communication skills. The issue is often compounded by the lack of an advocate who understands how the person communicates need, pain, discomfort or other kinds of distress. According to some sources, behavioral issues can be directly linked to medical or dental issues up to 80% of the time. Misinterpretation of challenging behaviors can lead to misdiagnosis of health issues and delay of appropriate treatment. If the underlying cause worsens, escalation of behavioral issues can potentially result in significant injury to self or others. In some cases fatal events have occurred when issues which might have been addressed if identified in a timely manner have failed to receive needed attention. Please keep in mind this article is not meant to provide a diagnosis of a behavioral or physical disorder, but rather to help guide discussions with providers of medical, dental and psychiatric services.

Rule Number One: Everyone Communicates. We just need to listen or see.

There are several reasons why medical and dental issues may be exhibited behaviorally. This first is one which almost everyone can relate to: When we don’t feel good we can become frustrated and grumpy. If you’ve ever had a headache or a cold and been cranky or withdrawn from your significant other, kids, pets or anyone else in your environment you’ve been there. The lack of ability to describe symptoms or communicate pain may make it difficult for all but the most familiar and observant of caretakers to interpret the existence of a problem. We merely see the resultant crying, withdrawal and verbal as well as physical outbursts strictly as a behavioral issue.

Rule Number Two: That which looks maladaptive is often highly functional.

An individual’s attempts to alleviate pain and other symptoms can take some intriguing forms. Self-slapping, picking, eye-gouging, head-banging and many other forms of self-abuse are often the person’s way of distracting from the pain of the underlying problem. It may look like it hurts, but it feels better than the alternative. There has been shown to be a 30% correlation of PICA, the ingestion of non-food items, and hand-mouthing with undetected gastroesophageal reflux or chronic heartburn. Placing items in the stomach can reduce the effects of the rising acid, also producing extra saliva or stimulating the upper portion of the esophagus. Rectal digging, self-induced vomiting, skin-picking or scratching and many, many other supposed behavioral issues can be tied directly back to physical issues. Even if the apparent behavior has been long-standing (“He’s always done that!”) it may still signify an underlying medical or dental complaint.

An other commonly missed medical condition that can easily be misinterpreted as a behavioral issue is a seizure disorder. Common signs that are seen with misidentified seizure activity are shouting, unsafe running or walking into dangerous situations, stripping of clothing, combative behavior and many forms of self-injury. Factors that usually distinguish a seizure from a behavioral outburst are the lack of a precipitating event (for example, an argument with someone), repetition of the same activity with each episode (stereotypic behavior) and fatigue, confusion and apparent lack of recollection following the event. Treatment of these “behavioral issues” with typical psychiatric medications has been known to increase the frequency of outbursts because these drugs can actually lower the seizure threshold.

Rule Number Three: We often have the means to make a difference.

As someone supporting and advocating for an individual with communication challenges there are several things that can be done to address behavioral issues that are related to underlying medical problems. The obvious start is a comprehensive medical and dental exam, particularly if it has been a while since this was last done. For the benefit of both the provider and recipient of health care services make sure that someone who is familiar with the person and understands their health history and communication cues is present. Dialogue such as, “We’ve been concerned because he’s been pulling at his left ear lately.

The lack of ability to describe symptoms or communicate pain may make it difficult for all but the most familiar and observant of caretakers to interpret the existence of a problem.

He’s never done that before” or “I recently learned that hand-mouthing is very often related to chronic heartburn and was wondering if that might be why she has been doing this for several years” can be a helpful way to prompt discussion and investigation into matters of concern.

So what ultimately became of the Sweat Sock Bandit? First of all, I still don’t know whether this activity is more appropriately described as PICA, hand-mouthing or the perfect fusion of both. It doesn’t matter. The provider was astute enough to recognize the existence of a potential problem and have him evaluated. His chronic reflux was identified and treated and the long-standing behavior, his odd little source of amusement, stopped for good. 

Criminal Justice: Arrest for Seizure-Related Behavior; copyright 2007; The Epilepsy Foundation

Tardive dyskinesia, or TD, is a disorder associated with the use of certain types of medications which act upon the nervous system, primarily those used to treat psychiatric disorders. The term tardive means delayed onset. The prefix dys means difficult, bad, faulty or abnormal and the term kinesia refers to movement. The symptoms of tardive dyskinesia include abnormal involuntary movements of the face, lips, tongue, jaw, eyelids, trunk and upper and lower extremities and can range from very mild to life-defining. Swallowing, speech, ambulation, functional living skills and even breathing can all be impacted by this disorder. Undiagnosed tardive dyskinesia is often the source of complex swallowing disorders, primarily the inability to protect the airway due to a reduced or absent gag reflex.

Symptoms may appear anywhere between 3 months and several years after exposure to the offending agents, with the average time of onset being four years. Some individuals do not demonstrate signs of TD until they are being tapered off of the causative medications. Contact does NOT need to be continuous but may be cumulative over a prolonged period of time.

Tardive dyskinesia was first identified in the 1950s following the introduction of the first generation of antipsychotic medications. Introduction of newer psychiatric medications, including SSRI’s, was thought to be a solution to the problem of TD, but unfortunately this has not proven to be the case.

Remember from HRST training that the primary reason for scoring is to trigger the considerations that assist with managing potential areas of health risk.

“Several studies have recently been conducted comparing the prevalence rate of tardive dyskinesia with second generation, or more modern, antipsychotic drugs to that of first generation drugs. The newer antipsychotics appear to have a substantially reduced potential for causing tardive dyskinesia. However, some studies express concern that the prevalence rate has decreased far less than expected, cautioning against the overestimation of the safety of modern antipsychotics.[41][47]” http://en.wikipedia.org/wiki/Tardive_dyskinesia

Other medications not used for psychiatric purposes have also been shown to cause TD, including Reglan (metoclopramide) and Phenergen (promethazine), which are used primarily to treat disorders of the GI tract. Depakote (divalproex sodium), used for both anti-epileptic and psychiatric purposes, has also been shown to be a causative agent.

Some individuals are at higher risk than others for developing tardive dyskinesia. These include females, the elderly, those with developmental disabilities or organic brain injuries, cigarette smokers and individuals who have shown previous sensitivities to psychiatric medications.

“Tardive dyskinesia not only may be painful and disfiguring, but it can also predict poor outcome in schizophrenia. Although many treatments have been tried, none have proven completely efficacious. The best treatment even today is prevention.” Industrial Psychiatry Journal; 2010 July-December;

Screening tests for tardive dyskinesia include the AIMS and DISCUS. All individuals taking medications with the potential to cause tardive dyskinesia should be formally screened for signs of TD before the medication is initiated and then at appropriate intervals thereafter, normally every six months. Experience has shown that the professionals demonstrating the highest proficiency in identifying tardive dyskinesia symptoms are pharmacists and nutritionists. Additionally, patients and /or their caretakers should receive information about potential side-effects so these may be reported at the earliest possible time. Advocacy is critical in this area to ensure the best possible outcomes for individuals taking these medications.

Treatment for TD symptoms includes removal, if possible, of the offending agents. For those who show withdrawal signs of TD, the causative medication is usually continued. Other treatments include a number of medications, which reduce the effects on the central nervous system. Cogentin is quite commonly used for treatment of TD symptoms, though the American Psychiatric Association now recommends against the use of this particular medication due to its negative side effects. Vitamins E and B6 have been successfully used to mediate the unpleasant effects of TD. Prevention of symptoms through the use of the fewest possible medications at the lowest effective dosage and the use of non-medication interventions continues to be the best solution for avoiding tardive dyskinesia.

Medscape, Tardive Dyskinesia, last updated Feb. 2012

HRST: Identifying TD Risk and Preventative Actions

Those who use the HRST are undoubtedly familiar with the long list of medications flagged as having a potential association with tardive dyskinesia. And that list continues to grow. We have now identified Depakote and Phenergen (used for nausea and vomiting) as well as all of their generic relatives, as potential causative agents. All medications included in this list, regardless of the reason for their use, will automatically force a score of 4 under the Psychotropic Medications section of the HRST. In the case of Reglan (metoclopramide) and Phenergen (promethazine), a person may have a score of 4 under this section, even if they have never had a psychiatric issue.

So why do we do this? There is one very simple reason. The population most frequently served by the HRST, those with developmental and intellectual disabilities, are also among the most likely to experience this particular side-effect.

Remember from HRST training that the primary reason for scoring is to trigger the considerations that assist with managing potential areas of health risk. Any time an individual receives a score of 4 in the Psychotropic Medications section of the HRST two very important considerations are triggered. One which prompts the prescribing professional to do AIMS or DISCUS screening at appropriate intervals and another which prompts training of those who work or live with the individual to be aware of potential symptoms and to report these to the appropriate professional for further action.

There are two ways to tell that a dwelling is occupied by rats: We either see the beady-eyed little creatures directly or, more often, we are made aware of their presence by what they leave behind. The more extensive the mess, the greater the infestation. This is a simple and straightforward (if slightly silly) principle that translates well into screening for the impact of health issues on a person’s life.

Absenteeism, disrupted productivity and interruption of social activities have many different causes. When the effects of physical or mental health issues begin to take a toll the result is often reduced productivity or learning, loss of social contacts and an increase in mental health issues, such as depression. The HRST has a number of ways to indirectly measure the degree to which a person’s life is affected by their health picture. We fondly refer to these as the “rat droppings” items. The first of these is Clinical Issues Affecting Daily Life.

In this area we gather information about the severity of health issues by using the number of days, full or partial, which a person is taken away from their normal activities by health or behavioral issues. Two people with the exact same diagnosis can have two very different health pictures.

Factors that can influence this can include:

• Severity of the disorder.
• Self or home-care practices.
• Access to health care resources.
• Presence of additional health or behavioral issues Missing regular activities due to illness or other clinical issues is often one of the first signs that there is an emerging problem.
• Response to treatment.

Days that should be included when determining how clinical issues impact participation are those where the person is unable to participate in normal work, school, social or home activities. Both full and partial days affected should be considered when determining the impact of health-related issues on normal activities

Some examples are:

• Days when the person is sick or injured.
• Days when behavioral issues impact participation.
• Days when an “episode” (seizure, asthma attack, allergic reaction) impacts participation.
• Days when there are appointments that address a diagnosed condition – these are probably the most difficult to understand, but they give a very good indication of the severity of the person’s involvement with their health issues.

Missing regular activities due to illness or other clinical issues is often one of the first signs that there is an emerging problem.

Many absences from structured activities do not count as clinical issues impacting daily life:

• Days when the person makes the choice to be absent not related to health issues.
• Someone making the choice for me, “My son does not need a day program!”
• Policy-driven absences that affect all participants and are un-related to specific health issues.

Missing regular activities due to illness or other clinical issues is often one of the first signs that there is an emerging problem. It may also be an indicator or a hidden issue such as abuse going on in the home setting. In very basic terms, the more time a person’s health issues distract them from normal activities the worse their overall health picture. This results in reduced work productivity or learning, reduced income potential and erosion of social contacts. Appreciating and addressing these issues in a timely manner can go a long way toward helping the person lead a more productive, satisfying and connected life. 

“Approximately 30% of children with epilepsy have other developmental disabilities. In one study, children with mental retardation and cerebral palsy had a 35% chance of developing epilepsy, children with mental retardation alone had an 8% chance, and children with a brain injury occurring after birth had s 75% chance. In general, the risk of a child with a developmental disability experiencing an unprovoked seizure by age 5 is about 4 times greater than in the general population.” (2013 Epilepsy Foundation of Metropolitan New York) The occurrence of seizures has been reported to be as high as 50% during the lifetime of individuals with disabilities.

“Overall, epilepsy increases the risk of dying by a factor ranging between 1.6 and 3 times that of the background population (Forsgren et al. 2005). How much does epilepsy shorten life, on the average? It depends upon the type of epilepsy. A study in the UK of 564 people with epilepsy followed for 15 years (Gaitatzis et al. 2004) showed that people with epilepsy of unknown cause died an average of two years earlier, but those with a known underlying serious disease causing the epilepsy died an average of 10 years earlier.” One study which followed 245 children with persistent epilepsy for 40 years found that during that period 32 individuals died of causes related to epilepsy.

(Web-MD Epilepsy Health Center)

Epilepsy-related causes of death include:

• Deaths related to the underlying illness causing the epilepsy.
• Deaths from conditions related to seizures, such as depression (suicide).
• Trauma or drowning as the result of seizure activity.
• Sudden Unexplained Death in Epilepsy (SUDEP)
• Status epilepticus

(Epilepsy.com Spotlight Newsletter, August, 2010)

Of the over 40 different seizure types that have been identified, many are due to conditions such as brain tumors or degenerative neurological conditions which may ultimately lead to the death of the individual. Death can also occur due to co-morbid conditions, which exist as part of the same issue or syndrome but do not directly cause seizure activity.

…the risk of a child with a developmental disability experiencing an unprovoked seizure by age 5 is about 4 times greater than in the general population.

Sudden Unexplained Death in Epilepsy, or SUDEP, is most common in young adults ages 20 to 50. Death occurs from cardiac or respiratory failure due to unknown causes and is most likely to be seen in individuals with poorly controlled generalized tonic clonic seizures and seizures which occur during sleep. Young age when seizure activity began, poor compliance with anti-epileptic medications and use of alcohol are other common factors in these deaths. SUDEP does not necessarily occur during a seizure or in conjunction with recent seizure activity.

Status epilepticus is generally defined as prolonged seizure activity (for 30 minutes or longer) but can also include seizures that occur back-to-back with no post-ictal recovery or seizures with a markedly prolonged post-ictal period. Status epilepticus can occur with any seizure type but is most dangerous with generalized tonic clonic seizures due to swelling that can occur at the base of the brain. In the U.S. there are approximately 50,000 deaths due to status epileptics each year. Death frequently occurs due to fatal disruption of brain physiology or disruption of normal cardiac rhythm. During their lifetime approximately 15% of individuals with epilepsy will experience status epilepticus.

Seizure Rating Information for HRST Users

The HRST assigns enhanced risk to individuals with seizure activity based on the frequency and/or severity of seizures. As a screening instrument the HRST does not differentiate between types of seizures, instead giving equal scrutiny to all seizure types and allowing the individual’s support team and physicians to make final decisions regarding necessary support and treatment.

We do, however, make several recommendations in the Evaluations /Service and Training Considerations for addressing many of the factors which may lead to deaths due to seizures. These include making sure that the individual has access to the services of a Neurologist at appropriate intervals and that their primary care provider is informed of the extent to which seizure activity disrupts their lives. Pharmacists’ services are also often sought related to safety issues and potential side effects of medications.

Many causes of seizure-related deaths are issues that could be reduced or eliminated by enhanced support in the home and work environments. All care providers, whether they are paid personnel or family members, should have basic instruction on seizure types and how to identify and document seizure activity as well as information about safe and appropriate medication administration. Training should also include information about identifying signs that seizure activity is worsening. These include increased seizure intensity, change in seizure signs and prolonged seizure times, even when they do not qualify as status epilepticus. Finally, instruction is needed about how to recognize and respond to seizures and seizure emergency and unwanted effects of medications and how and to whom to report problems. 

Eating is one of life’s greatest pleasures. Is there a major occasion or event in almost any culture that doesn’t include a special meal? Food nourishes both our bodies and our souls, but eating can also lead to a host of problems, including fatal ones. This is a complex and extensive topic. In writing about it and trying to even begin to do some justice to the subject we discovered that there was far too much material to hold the interest of even the most patient reader. This month’s newsletter will cover swallowing difficulties and other mechanical or anatomical issues that can cause problems with eating.

The human body has one or two questionable anatomical design issues. In order to complete a successful swallow food must pass over the opening to the airway (trachea) to reach the tube that conducts food from the mouth to the stomach (esophagus). A small flap, the epiglottis, normally folds down to cover the trachea and protects it from inhalation of foreign material, or aspiration. Successful swallowing also depends on good alignment of the head and neck (Sit up straight, ears over your shoulders, please). There must also be a functioning nervous system and good muscular control of the jaws, tongue and small muscles of the throat for the swallowing mechanism to work as it should.A full set of teeth that are intact and pain free are also helpful, though not strictly necessary.

Dysphagia is derived from the Greek words for bad or disordered eating though the term generally refers to issues that occur during one of the three phases of swallowing. There are many causes and presentations of dysphagia.

Simply talking or laughing while eating can cause food to “go down the wrong pipe”, as Grandma used to say. The inability or unwillingness to sit up to eat can interfere with the essential role that gravity plays in assisting the safe passage of food. Physical deformity or poor posture are often seen in the elderly, individuals with disabilities as well as certain teenagers. This can interfere with the alignment of the trachea and esophagus or the esophagus and the stomach. This can also impair the function of the smaller muscles of the throat that are involved in swallowing. Poor muscular control due to disease or medication side-effects can also contribute to problems with the basic process of a normal swallow. Many medications dry up saliva production making it difficult to lubricate food for a smooth trip to the stomach. Dental problems or the absence of teeth can make it difficult or painful to chew food to the proper consistency.

Mechanical changes in the esophagus can also result in dysphagia. Individuals may be born with an abnormally small esophagus. It may also be damaged or restricted by growths of the organ itself or within the chest such as the lungs, heart, vessels, cervical (ofthe neck) spine, or local lymph nodes. Damage to the esophagus can occur due to long-term exposure to stomach contents if the person experiences reflux. Ingestion of items that damage the esophagus through temperature-related or chemical burns may also cause scarring that restricts the esophagus.

An individual with dysphagia or those assisting in his/her care may be unaware that they suffer from the condition. Signs of dysphagia may include:

• Difficulty controlling items (food or saliva) in the mouth.
• Difficulty beginning a swallow.
• Coughing or choking while eating.
• Wet or gurgly sounding voice during or after eating.
• Using unusual postures while eating such as gulping with the head back (gravity assisted swallow).
• Passage of food or fluids through the nose while eating.
• Complaint of pain or other swallowing difficulty.

Individuals with long term dysphagia my experience frequent bouts of pneumonia, unexplained weight loss and/or meal refusals. One trick used by speech pathologists to detect silent or discrete aspiration is to attach a pulse oxymeter (which measures oxygen content of the blood) to the person’s finger during meals. Individuals who aspirate while eating often experience a decrease in their oxygen levels at this time. This is a daunting list and it may be frightening to non-medically trained caretakers to feel they must recognize and address these issues. But like many problems it becomes simpler to address when taken one piece at a time.

The first individuals to be notified are those with immediate contact with the individual. These would include case managers, nurses or the person’s primary care provider.

First and foremost, train individuals or their caretakers to recognize and report the signs. “Jamie’s always done that and it’s never been a problem,” is a dangerous way of thinking. So is the inability to recognize changes in the person’s eating habits that may be related to a developing problem.

Second, who should be notified and what can be done? This piece has been exclusively about identifying the existence of the problem and less about treatment, which should always be handled by trained professionals. The first individuals to be notified are those with immediate contact with the individual. These would include case managers, nurses or the person’s primary care provider. With significant problems the services of a speech pathologist or gastroenterologist is often needed.

Third, when professionals make recommendations or write orders, follow them scrupulously. Issues with eating can easily and rapidly lead to death with a single slip. If an altered texture diet is ordered train caregivers how to provide it. If the individual has a feeding tube and orders for no food by mouth (or NPO), make sure nobody sneaks in food where it doesn’t belong. This is not an area with a wide margin for error.

Fourth, people with swallowing issues can often improve and return to eating by mouth or to consuming foods and fluids with more challenging consistencies. Return to a more normal style of eating whenever possible should always be part of the person’s personal goals. It is not always possible but it is always desirable and worth the effort. After all, who wants to miss out on a nice big, gooey piece of birthday cake if they don’t have to?

Next month we will look at behavioral challenges as they relate to eating. 

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.

Over the next several months we will be taking an in-depth look at each of the 22 items on the HRST. The first major category is Functional Status, which deals with those activities each of us performs (and often takes for granted) on a daily basis. This broader category contains five separate items: Eating, Ambulation, Transfer, Toileting, and Clinical Issues Affecting Daily Life. We will cover each of those individually in the coming issues, but I feel it is important to give some background on the subject before we begin.

There are two very good reasons that issues with functional status appear on an instrument that concerns itself with risk identification and management. First, in their most extreme forms, these issues indicate extreme needs for support to prevent severe injury or even loss of life. Individuals requiring the most assistance with eating mobility also have demonstrably higher death rates. Incontinence and the need for catheterization carry significant risks for infection, skin breakdown and disorders of the urinary tract and bowel. Lastly, the degree to which a person’s health or behavioral issues impact their life has a direct impact upon their ability to participate in expected daily activities such as school, work or social activities.

One of the biggest disservices we do for individuals with special needs is to assume that health and wellness issues cannot be improved…

Secondly, loss of functional skills is often the first noticeable sign of declining health status. Examples of patterns which should raise red flags include:

• Going from eating independently to requiring direct assistance, an altered texture diet or a feeding tube.
• Going from being able to walk and move from one position to another to needing supervisory support, a wheelchair, mechanical seating support or lift equipment.
• Progressive loss of toileting skills involving hygiene, continence or requiring assistance to empty the bladder.
• Increasing numbers of days where usual activities are impacted by the need to address clinical issues.

One of the biggest disservices we do for individuals with special needs is to assume that health and wellness issues cannot be improved or, even worse, that progressive loss of skills over time is “normal” Deterioration, in spite of the most skilled intervention, may well be inevitable. It should never be regarded as normal. It is always a sign that something is going on. In many cases loss of skill is an early opportunity to begin looking for and correcting root cause. In those with long-standing functional deficits there are often opportunities to provide interventions that support the person more successfully around their issues or improve skills to lessen the risk.

Next month’s article will discuss issues with Eating, how they can negatively impact a person’s health and quality of life and how even serious issues can be addressed in ways that reduce the potential for unwanted health consequence.