Gastroesophageal Reflux

Recognizing the Enemy is Half the Battle!

In last month’s newsletter we addressed The Fatal Five; the top five killers of people in both in both institutional and community settings. Over the next several months we would like to discuss each of them individually. This month we will be discussing GERD and how to recognize it in its many forms. When left untreated, not only is reflux extremely uncomfortable but it can lead to death from frank aspiration, GI bleed or esophageal cancer.

Gastroesophageal reflux disease or GERD is the reverse flow of stomach contents into the esophagus. Once outside the protected environment of the stomach, stomach acid can irritate and harm the esophagus, be inhaled or aspirated into the lungs, or damage the gums and teeth.

GERD is often nature’s way of telling us that our diet needs some attention. Foods that contain acid (tomatoes, citrus) excessive fats, coffee, alcohol, spicy foods, chocolate and mint may cause or worsen reflux. Carrying excessive weight, particularly around the abdomen, can exacerbate the symptoms of reflux, both due to lack of tone of the abdominal muscles and the mechanical pressure of the excess mass exerting upward pressure on the stomach and its contents.

Train those who work and live with vulnerable individuals to recognize and report the signs and symptoms of gastrointestinal disorders at the earliest possible time.

Individuals who have chronic health issues have an increased vulnerability to GERD. Other factors that can contribute to the development of reflux include significant physical disability (especially those that alter the anatomy of the GI tract), hiatal hernia, emotional and behavioral issues, tube feeding diets and, above all, medications (anticholinergics, muscle-relaxers, NSAIDS and MANY others.) Fortunately there are several easily recognizable factors that can indicate that a person has or is likely to develop reflux.

Common signs of reflux are burning pain in the upper abdominal or chest areas, regurgitation of stomach contents, meal refusal, belching and/or flatulence. Less commonly seen are behavioral signs such as hand-mouthing and PICA which, when present, have a 30% correlation with silent reflux. Other symptoms of silent reflux are unexplained weight loss, low serum albumin and progressive anemia.

Medications have been the most commonly used first line of defense against GERD. Proton pump inhibitors such as Prilosec (omeprazole) and Histamine-2 antagonists like Zantac (ranitidine) are frequently used. Problems with these medications include malabsorption of vitamin B-12 and protein. Fractures associated with impaired calcium absorption are also requently seen with long-term use.

Other steps that can be taken to combat reflux include:

  • Maintain a proper body weight for height.
  • Consume a well-balanced diet in reasonable portions three or more hours prior to bedtime.
  • Avoid foods that are known to aggravate heartburn, keeping in mind that everyone benefits from the occasional indiscretion, especially those that are covered in chocolate.
  • Identify medications that are associated with GI distress and discuss symptoms with the prescribing physician so that these are used only when absolutely necessary.
  • Identify and use positions that promote emptying of the stomach.
  • Promote the swallowing of saliva, which neutralizes acidic stomach contents by having individuals who drool evaluated and treated by a speech pathologist.
  • Train those who work and live with vulnerable individuals to recognize and report the signs and symptoms of gastrointestinal disorders at the earliest possible time.

Gastrointestinal Rating Information for HRST Users

“Has this person shown signs or symptoms of GI problems, including behavioral signs, within the past year OR had a gastrointestinal bleed at ANY time in their life?”

This is the opening rating question for Item K. Gastrointestinal on the HRST. Any and all conditions affecting the GI tract are rated in this section, but please be aware that we do not wait for the physician to grant a diagnosis in order to score this item. Gastrointestinal issues are some of the most pervasive and under-diagnosed health problems in the world. They may only become evident when the person has experienced some kind of a crisis such as a gastrointestinal bleed or an aspiration event.

Important things to look for in the individuals you serve are food aversions or avoidance, excessive belching, heartburn, rumination, unexplained vomiting, appearance of ingested food, including feeding tube formula, in the back of the throat, coughing within three hours of meals or at night, hand-mouthing or PICA behaviors and unexplained or escalating behavioral issues. Above all, INQUIRE ABOUT THE USE OF OVER-THE-COUNTER MEDICATIONS FOR HEARTBURN, NAUSEA OR OTHER GI ISSUES!

If any of the above conditions or any other signs of possible GI issues have been observed in the past twelve months, answer YES to the first rating question on Rating Item K.

Gastrointestinal issues, once detected, are often easily treated. In almost all cases the earlier an issue is caught the fewer long term consequences will result, resulting in a happier person with a much better outlook in terms of their overall health and quality of life.

Celebrate 2017!

Welcome to 2017 and to all new HRST newsletter subscribers! It seems just like yesterday that we were all worried that Y2K was going to crash all computer systems and the world would come to a screeching halt! Now 17 years later, computers are smaller, faster and have more capabilities and our world is still intact. Some things haven’t changed in 17 years, though. The tradition of making New Year’s Resolutions seems to persist although it has been proven time and time again that few people keep those well-meaning pledges. In this article, though, I would like to give you 3 New Year’s Resolutions that you can keep.

Whenever we have the opportunity to improve the quality of life or health for an individual, we should advocate.

  1. Always advocate for the individuals that you serve.Whenever we have the opportunity to improve the quality of life or health for an individual, we should advocate. Advocating for someone is just speaking the words that they would say on their own behalf if they had the capabilities. Maybe you know someone who is very physically disabled but is fascinated with bowling. Can you find a way to take that person to bowl? Maybe they just sit on the lane while you throw the ball for them. Maybe just sitting in a bowling alley among all the noise and activity is enough. The important thing is to MAKE IT HAPPEN!
  2. Document and report any and all changes in the individuals you serveIt doesn’t matter if you are the person closest to the individual or the person farthest away from the individual, if you see something, say something! That has become somewhat of a trite phrase, but if you notice something different, no matter how small, PLEASE report that change. You may be saving someone’s life. I served an individual who was a huge coffee drinker and loved his snacks. His direct support professional called me one Sunday evening and said he did not want any coffee or his snack and wanted to go to bed. We took him to ER and he was diagnosed with pneumonia. No fever, no cough, no other symptoms at all- he just didn’t want his coffee and snacks. Had the staff not noticed this small change and felt it warranted notification of someone, he might not have received treatment at the early stage of his disease.
  3. Make sure to let your work partners know they are valued.All of us are partners in providing services to individuals and, really, none of us are more important than the other. None of us can do this difficult job alone. I once worked for a company where everyone employed by the company was called a “partner”, not an “employee.” We need the direct support professionals to provide direct care and improve individuals’ skills by implementation of programs. We need the QDDP to write the programs and keep the agency in compliance with regulatory standards. We need the nurse to educate on health and wellness and identify actual or potential health issues with individuals. We need the executive director to run the business so everyone is paid for the services they provide and to provide for adequate housing, meals and other needs for individuals served. Notice the small things that someone does. Appreciation doesn’t have to include a big bonus or a raise; a simple “Thank You” goes a very long way.So, after that expensive gym membership goes unused, the size 6 dress still doesn’t fit and the elliptical machine becomes a clothes hanger, please keep in mind these three resolutions above.

They will truly make a difference and require no cash outlay or additional time that no one has enough of already. Little things make all the difference in the world!

Death from Aspiration Pneumonia

Aspiration occurs when foreign material is inhaled into the airway. Causes of death include asphyxiation due to a blocked airway and irritation or infection of the respiratory tract due to inhaled material, or aspiration pneumonia, which will be the primary focus of this segment.

Sources of aspirated material include food or drink, saliva or nasal secretions, or objects placed in the mouth such as gum, toys, coins or other small foreign bjects. These objects are often contaminated, not only with bacteria from the oral cavity but also with whatever outside organisms they encountered before being placed in the mouth. Aspirated material can also come from the stomach, either due to vomiting or gastroesophageal reflux, (GERD.) This material is particularly dangerous because of its elevated acidity.

Factors that enhance the risk of aspiration from either source include altered level of awareness, poor trunk control, physical deformity, medications that are sedating or otherwise impact swallowing, alcohol consumption, problems with swallowing, including those associated with the aging process, and behavioral disorders which involve food seeking/stuffing or consumption of non-food items (PICA.) Recent antibiotic use or hospitalization, place of residence (such as a rehabilitation facility or a nursing home) and overall level of health can also increase the risk for bacterial infection with aspiration pneumonia. Individuals receiving enteral nutrition (tube feeding) have been determined to have a higher level of risk compared with those who eat by mouth. (2) Statistics are not readily available, but experienced field clinicians say that roughly 25% of the time the source of aspirated material comes from above and 75% of the time it comes from the GI tract.

Decreasing the risk of aspiration pneumonia is a task that must be relentlessly pursued from several angles.

Symptoms of aspiration include bluish discoloration of the lips or skin, coughing or gagging, discolored, foul smelling sputum that may contain blood or pus, chest pain, shortness of breath, fatigue, fever, wheezing, sweating without exertion, breath odor and difficulties with swallowing. Examination findings may reveal altered respiratory sounds, decreased oxygen saturation, elevated pulse and decreased mental awareness.

Outcomes with aspiration pneumonia can vary greatly depending on many factors, including the severity and extent of the pneumonia, the type of bacteria involved and the timeliness of treatment. Individuals who are in poor physical condition at the onset of symptoms will obviously not fare as well as those who are healthier.

Decreasing the risk of aspiration pneumonia is a task that must be relentlessly pursued from several angles. Simply helping individuals attain optimal body position during and after eating is a vital first step in the process. Specialized support and positioning both during and after a meal may be required for those who have no or poor trunk control or who have other significant bodily deformities such as a severe scoliosis. The Individual’s typical response to eating should be known and observed, particularly if they receive enteral nutrition via gastrostomy, jejunostomy or nasogastric tubes. Monitoring for decreased oxygen saturation during and immediately after eating can be a good way to detect silent aspiration. Individuals who have known or suspected swallowing disorders, food-related behavioral disorders and those whose level of awareness may be impacted by medications or other factors should be given particularly close observation and any necessary mealtime support. Individuals whose health and nutritional status are compromised should also receive specialized attention and support to decrease their vulnerability.

Why Doesn’t The HRST Concern Itself With Aspiration? Actually it does, you just have to know where to look.

Ok, it is specifically mentioned once, in Item P. Nutrition. The person will have a score of 4 in this area if they have had one or more hospitalizations for aspiration within the last year. And if they had a severe occurrence Item Q may be scored due to the interventions needed to care for them following the incident. But if they have already had an aspiration event you’re already a few steps behind the 8 ball, which is not where we want you to be. In this month’s article we mentioned several of the risk factors for aspiration, including methods of eating, physical issues, behavioral problems and poor nutritional status. We want each individual’s issues in these areas identified and supported so that the chances of an aspiration event occurring are minimized to the greatest extent possible.

We’ve got you covered

Several of the Items on the HRST cover each of the risk areas associated with aspiration. Item A. Eating identifies those who are fed via tube or have significant needs for support for safe eating. Item B. Ambulation (yes, Ambulation) tells you who needs significant support to maintain a seated position due to significant physical deformity or problems with trunk control. Item G. Self-Abuse deals with behaviors in which the person engages that place them at risk for injury, like rumination, hand-mouthing, PICA, food stuffing or any other behavior that places the person at risk of an aspiration event. Item K. Gastrointestinal identifies those who are identified as having GERD or who have behaviors that may indicate unidentified reflux. Item P. Nutrition identifies several factors, including unplanned weight loss and suspicious lab values, which may indicate that a person has issues would make them more likely to respond poorly to an aspiration event.

“There’s gold in them thar Considerations!”

Once a potential problem area is identified the problem is half managed. One of the unique features of the HRST is that once it spots trouble it generates a plethora of helpful suggestions in the form of the Service and Training Considerations. While the body of the instrument does not specifically mention aspiration, the Considerations are very sensitive to this very real and deadly threat. When a person receives a score on any of the above mentioned items that places them in the target range as having a potential for an aspiration event there are several considerations generated which are specifically designed to guide them out of harm’s way. These include assistance from appropriate professionals and training of direct caregivers in areas like positioning and seating, behavioral supports, mealtime planning, returning to oral feeding when possible and many, MANY others.

If you have concerns about a person for whom you provide services please take time to review the HRST Considerations. If you have questions about how they can help identify and support an at-risk individual our clinical support staff is available to discuss these concerns with you at your convenience. We hope you will find this a valuable resource.

The Bowel Movement

Bowel obstruction has a wide variety of causes and often results in the need for hospitalization or surgery. It is the most common cause of preventable death in individuals with ID/DD in community settings. This article will help identify some of the issues that lead to constipation and bowel obstruction in this population and give information about prevention and early response.

Bowel obstruction occurs when the large or small bowel becomes partially or completely blocked. While there are many causes, the primary issue in people with ID/DD is chronic constipation. The controllable factors that most commonly contribute to this are:

  • Diet,
  • Medications,
  • Lack of movement.

Dietary contributors to constipation include lack of sufficient dietary fiber and/or inadequate fluid intake. There are also several foods that can either inhibit or promote normal bowel function. Most nutritionists recommend a daily fiber intake of 25 to 40 grams, preferably from regular foods rather than from psyllium or other artificial sources. Good ources of dietary fiber are fruits, vegetables and nuts WITH skins, whole grains products and many kinds of beans and legumes. Meat, eggs and many processed foods do not contain fiber. Fiber content is part of the information displayed on food nutrition labels.

Any person with a history of bowel obstruction needs particular care and surveillance as the bowel now has scar tissue that makes a repeat obstruction highly likely.

Obtaining adequate amounts of fluid is also crucial in assisting with prevention of constipation. Inadequate fluid intake can result in hard, compact stools that are difficult to pass. Water is of course the best beverage, though many people do not particularly care for it. Milk and juice are also good sources but may be unacceptable due to intolerance or high sugar content. Coffee, tea and soda are less desirable because they are high in caffeine and acid, which are dehydrating to the body. Alcoholic beverages act as a diuretic. Recommended fluid intake varies widely depending upon the individual’s gender, size, age and overall health. Several sources recommend approximately 2.5 liters per day for women and 3 liters per day for men

Almost 2/3 of all drugs, whether prescription or over the counter, have anticholinergic properties either as an intended effect or a side effect. This means that they dry out secretions and interfere with the contraction of smooth muscle, including the stripping action of the GI tract. Given that persons with disabilities and the elderly are the most over-medicated people in our nation, it is no surprise that they suffer from constipation at such an alarming rate. Use of medications to relieve constipation causes the gut to lose its enthusiasm for doing its job and, in the long run, make the problem worse rather than better. An important step in preventing constipation and bowel obstruction is to eliminate all drugs that are not strictly necessary. The healthiest persons with disabilities are on the fewest medications.

Another issue is the lack of active movement, particularly if we are aging or have physical disabilities. The bowel needs the stimulus of movement and the assistance of gravity to increase its enthusiasm for doing its job. Positions that stimulate the abdomen and increase active movement are also helpful to stimulate the gut. A 30 minute walk every day may also bebeneficial for persons with the motor skills to do so.

Any person with a history of bowel obstruction needs particular care and surveillance as the bowel now has scar tissue that makes a repeat obstruction highly likely. Knowing the person’s normal bowel habits and responding quickly when they vary is important when factors like medications and immobility cannot be improved. Also important is training direct care providers to recognize and respond to the signs and symptoms the person exhibits when going into a pattern of impaction or obstruction. These can include loss of appetite, abdominal bloating or distention, and complaints of significant abdominal pain. Behavioral signs, including irritability and self-injury are also not uncommon. While preventing the problem is the most desirable, intervening at the earliest possible sign of a problem is essential to a successful outcome.

High Fiber Fruit Butter & Trail Mix Recipe

Here are some of the recipes we’ve recommended over the years to enhance the fiber intake of family, friends, colleagues and the individuals they serve. They are quite tasty and can be used in a variety of ways.

Be sure to encourage extra fluids and do not increase daily fiber intake by more than 6-7 grams/day for each two week period. For example, if baseline is 8-10 grams per day, go to 14-16 per day for two weeks and then bounce up to 20-22 for the next two weeks and then to 26-28 for another two weeks. For each 6-7 grams of fiber increase, add another 8 ounces of non-dehydrating fluid.

The Fruit Butter recipe has been around for quite some time. It is very adaptable and can be eaten with a spoon, spread on toast or bread, mixed in with applesauce or pudding or served warm over oatmeal or ice cream. It can even be mixed with lemonade or another juice and frozen to make popsicles. The limit is only your culinary imagination

Fruit Butter

  1. 2 cups raisins
  2. 3¼ cup prunes with juice
  3. ¼ cup honey
  4. 1 tsp. vanilla
  5. ½ cup apple juice
  6. Soak overnight, then drain, place in food processor for 3 minutes
  7. Serving size-2 ½ ounces daily in the morning

Servings per batch: 16 servings @ 8 grams of fiber per serving

Trail Mix

This trail mix recipe was created circa 2006 when Karen Green McGowan and her associate were doing a sweeping round of bowel training for one of their state clients. So many high fiber foods are not particularly palatable to those who most need them. We carried this around to all of our training sessions for several years and can report that almost everyone LOVES it and they experienced the desired effect of enhanced fiber intake!

  1. 2 cups raisins
  2. 1 lb. raw almonds
  3. 1 lb. raw walnuts or pecans
  4. 2 cups raisins
  5. 2 cups dried cranberries
  6. 2 cups unsweetened coconut flakes
  7. 1 box Fiber One cereal
  8. 1 box Fiber One Honey Clusters cereal
  9. 1 bag bittersweet chocolate chips

This recipe can be altered according to taste or for those who are allergic to any of the ingredients. Make sure that any replacement ingredients used are also high in fiber. This recipe makes a very large batch and freezes very nicely.

Two ounces contains 6 or 7 grams of fiber.

Appreciating the Universality of Risk: Rating Children with the HRST

We often get this question with regard to the applicability of the HRST: How young is too young? The answer is simple; there is no age limit. The HRST rating criteria applies from womb to tomb. In this brief article we will quickly cover how this works.The HRST does not recognize or acknowledge the concept of normal vs. abnormal. It simply does not apply here. What matters to a SCREENING instrument is the presence or absence of certain factors, not their source. That territory is covered by any necessary assessment and will be addressed when the team consults the HRST Service and Training Considerations. For the purposes of rating we only ask ourselves whether or not a particular situation exists and then subsequently determine risk.

Children, by the very nature of having not yet acquired full physical or cognitive skill development, are at higher risk. Typically developing children will eventually “age out” of the severity of these risks due to skill acquisition. Nevertheless, until that happens the risks are very much present and real. For children who, due to a condition or intellectual and developmental disability, do not eventually acquire these skills, the risks often do not diminish and may never go away. Instead these risks may remain indefinitely and at times even increase. Unlike children who age-out of certain risks and thereby lower their HRST score over time, children for whom the risk factors remain due to developmental issues will likely retain HRST scores accordingly.

Let’s look at several items on the HRST that apply to infants and children, regardless of if or where they fall on the developmental spectrum. Keep in mind that in either situation described above, when the risks are present regardless of the reason, cause, or age the risks must not only be identified but also addressed as effectively as possible.

Children, by the very nature of having not yet acquired full physical or cognitive skill development, are at higher risk.

A. Eating: All infants begin life on an altered-textured diet, both for safety and nutritional reasons. This lasts the majority of the first year of life, after which they should progress to regularly textured items. The HRST scoring for this item would reflect the risks that are involved as a result of eating altered-textured food. If the child were entirely fed via feeding tube or other external source, this would increase the score. These risks remain very real for adults who also need assistance eating, altered-textured diets, or are fed by tube.

B. Ambulation: No child under the age of around twelve years old should score a 0 on this item, which indicates no risk is identified. Most infants do not walk until they are around one year of age. Infants under eight months of age usually require outside support to sit. Children up to a fairly advanced age require supervision with walking for safety reasons, like avoidance of cross-traffic. Ambulation scores for even typically developing children will be triggered depending upon their specific needs. Children, or any adult, who cannot be placed in an upright sitting position regardless of adaptation are assigned the maximum score for this item.

C. Transfer: A slightly tougher item than ambulation, but again, it will rarely rate a score of 0 (noting no identified risk) until well after the first year of life is completed. Early in life children can usually be moved about with the physical assistance of a single caregiver. For safety reasons they require assistance and supervision with things like stairs, uneven surfaces and getting in and out of the bath or shower for several years. Infants and children should always trigger a score in this item until they develop both the physical ability and judgment needed to manage all transfer situations independently. For those individual who do not develop these skills the risks and scores remain.

D. Behaviors: Many children will score in the behavioral section, not because they are bad or poorly parented, but because they lack the formal communication skills and frustration tolerance of adults. Hitting, biting, kicking, cutting hair, and painting walls, etc., happens often and it qualifies for scoring. If physical restraint use applies, and it often does, it should be included, as should any medications used. Again, for some these behaviors may not disappear but remain along with the associated risks.

E. Gastrointestinal Issues: Although spitting up after meals is not uncommon in infants under one year of age it still presents certain risks. These risks, such as aspiration, choking, or esophageal damage are very real for the individual regardless of age.

F. Skin Integrity: Continuous incontinence is an issue that is associated with skin vulnerability. This will earn any child a higher score until they are potty-trained, no longer requiring skin monitoring. If other issues related to skin apply,they should be considered as well. These risk do not go away with age as long as the condition causing incontinence remains.

G. Safety: According to the CDC the single most common cause of preventable death in individuals younger than 45 years of age is accidental injury. Depending upon age bracket, injuries related to falls are either the number one or two cause of emergency room visits across the age spectrum. While we do not advocate rating every trivial scratch or bump, if an injury requires first aid or medical attention it should be captured here, as should falls or near-falls. These serve as indicators of other, often hidden, issues.

In order to thrive and reach their full potential, children require protection and support for many years after birth. Just because these needs are part of the typical developmental process does not mean they do not pose risks and cannot be captured on a screening instrument like the HRST. We strongly encourage our users to think in terms of what is needed, not what is “normal” for the person.

The tool should be applied to children exactly as it is to adults, with the exception of frequency of review. This is due to the rate of expected, normal developmental changes. If the child is under two years of age, the tool should be reviewed quarterly. From ages two to five, the frequency should be semi-annually. From six and above, the normal annual schedule may be observed. 

Can the HRST Predict Life Expectancy?

In 2015 a study was done by Georgia’s Department of Behavioral Health and Developmental Disabilities (DBHDD) on mortality, mortality trends, and related information to the health and care received by people by the Georgia DBHDD. What was needed was a straight-forward, usable measure of health condition and health risk. ICD codes were too complex and hard to use.

GA’s DBHDD is a long-time user of the Health Risk Screening Tool (HRST.) They decided to use the HRST data as a measure of health risk to model mortality. What they found was that it was not residential setting, gender or part of the country that was associated with mortality but rather the two main predictors of death were:

  1. Age
  2. HRST Health Risk Scores

Gwendell Gravitt, Jr, Director of Office of Performance Analysis, Division of Performance Management & Quality Improvement for DBHDD and Catherine Ivy, Director of Community Services, Division of Intellectual and Developmental Disabilities for DBHDD presented their incredible report findings at the 141st American Association on Intellectual and Developmental Disabilities (AAIDD) annual meeting.

The goal was not just to get information but to use it to make system improvements to quality of care.

Their presentation, called “Understanding Mortality Risk in Order to Prevent it”, specifically featured the Health Risk Screening Tool and how the scores arrived with its use were used in their study. The goal was not just to get information but to use it to make system improvements to quality of care. They were able to do just that…

Mr. Gravitt and Ms. Ivy will be presenting their updated 2016 report at the Home and Community Based Services Conference in Baltimore, MD this August. Their new report will show how they were able to use the information in the 2015 report to reach their goal.

The study is being updated to include the 2016 data and it will be presented at the HCBS conference in Baltimore, August 30th, 8:30 AM.

To see the complete 2015 report, click here.

How Can I Really Support Any Individual with Disabilities?

This should be a question we all ask ourselves on a daily, or more frequent, basis. I say “more frequently” because sometimes we lose sight of what is really important in our jobs.

Completing the program plans, the data collection forms, the medical visit follow-ups, the day-to-day operation of any home, managing behaviors, administering medications-the list goes on and on of the responsibilities in any given day. But, somewhere along the way, the person we are providing services for gets lost in all of it. One on my co-workers says, “You get lost in the weeds” meaning we canlt see above all of that “stuff.” Yes, it’s important “stuff”, but I wager the person’s quality of life and quality of health is a lot more important than some of that “stuff” we deal with daily.

Unfortunately, many of the paid and unpaid staff supporting individuals with disabilities do not think that they are important enough, knowledgeable enough or strong enough to advocate for an individual. YOU ARE! No matter where you fit in an organization, or even if you don’t work with individuals with disabilities, you can advocate. Advocacy is standing up for what is right for a person, speaking up for a person when they can’t, or defending a person.

Advocacy is standing up for what is right for a person, speaking up for a person when they can’t, or defending a person.

Transform all of that “stuff” into advocacy. How can you advocate for a person to help them not get yet another psychotropic medication? You must not be afraid to speak up. If the person has a new onset negative behavior, they are urinating frequently, they are incontinent of urine, the urine smells bad and the color is dark and the doctor wants to order another behavior med to treat the behavior, is that right? It shouldn’t be. We should be advocating for the person to have testing to see if they have a urinary tract infection. You don’t have to be aggressive, but you do need to be assertive and not afraid.

You could say, “Doctor, this new behavior started at the same time as XYZ symptoms. What do think about testing for ABC or could you help us get a referral to DEF?” Maybe the person needs a swallowing study because they are coughing at meals or a referral to a speech therapist. Maybe they are angry because of falling more and becoming more dependent on caregivers. That individual might benefit from a complete physical to look for medical causes of the falls or referral to a physical or occupational therapist. “If you see something, say something”. It doesn’t matter if it is bullying, abuse, neglect or using the “R” word. Advocacy is everyone’s job. Please don’t think of yourself as someone who just provides personal care, passes meds or cooks a meal. Don’t think that you can’t make a difference. You can!

There is a short story of a young boy and an old man walking along a beach covered with starfish. The little boy started picking them up one by one and putting them back in the ocean. The older man said “Son, you’re not going to make any difference with all of these starfish.” As the little boy put one more back in the ocean, he said “I made a difference to that one.”

vThat’s all I ask of you this month: just make a difference to one. Article End Mark

Down Syndrome

Down Syndrome, or Trisomy 21, is a genetic disorder and because it causes some classic external features, particularly noticeable in the face, it is recognized easily. I’m sure everyone who is reading this knows someone, has met or will meet someone with Trisomy 21 in their lifetime. Are they different? Sure! Are you different? You bet! Do you want to be an exact replica of everyone else? Nope (or at least I hope not)! John Langdon Down was an English physician who ascribed the characteristics of the syndrome in 1866. It had been recognized previously, but no other physician had specified it as a distinct syndrome. In 1959, Jérôme Lejeune, a French physician identified it as a genetic disorder.

Every person has 23 pairs of chromosomes equaling 46 in total. Individuals with Down Syndrome have three #21 chromosomes so they have a total of 47. There are also three different kinds of Down Syndrome and there is not enough time or room to discuss them here. The extra chromosome can come from the mother or the father. The only known factor linked with an increase in risk of Down Syndrome is maternal age. The older the mother, the higher the incidence of the fetus having Down Syndrome.

There are about 6,000 children born per year with Down Syndrome and everyone is different in their abilities. Intellectual disability can range from mild to severe. Regardless of their intellectual abilities, they all have a set of characteristic facial features. Some of the features are slightly slanting eyes, flattened facial features, small or misshapen ears and a small head with a short neck. Other features may include a single crease across the palm of the hand, short stature and poor muscle tone. There may also be increased incidence of heart defects and hypothyroidism. As they age, celiac disease is more common as is gastroesophageal reflux disease (GERD).

There are about 6,000 children born per year with Down Syndrome and everyone is different in their abilities.

One of the bigger concerns with aging in a person diagnosed with Down Syndrome is early onset Dementia of the Alzheimer’s Type (DAT). The frequency ranges all over the board, depending on the source, from 50% to nearly 100%. Symptoms may be seen as early as age 35, but are typically seen in the mid 40’s to 50’s. DAT is caused by plaques and tangles in the brain caused by amyloid protein. Unfortunately, one of the genes on chromosome 21 codes amyloid protein. This means that the person with Down Syndrome has 3 genes working to code that particular protein. Early symptoms may be irritability, withdrawal, loss of previously gained skills and changes in behavior. The point is to be aware of the possibility and observe closely for early signs. As individuals with intellectual disabilities are living longer this may become a new health dynamic in the field of IDD.

Just remember to celebrate the differences in everyone we meet. Be vigilant in knowing what conditions a person with Down Syndrome may experience and seek early treatment when symptoms are noted or behavior changes.

Understanding & Communicating: The Key to Quality Health Care for People With Disabilities

Let’s face it, nobody seems to be getting any younger these days, including people with disabilities. That makes access to competent health care a pretty big deal for all of us. The ability to communicate our symptoms to the physician is critical, even if we need an interpreter to speak for us. Most everyone knows how important early diagnosis is to the outcome of an illness.

Many people with complex disabilities have been aspirating (swallowing down the wrong tube) for years. While you and I might promptly seek medical attention for this uncomfortable symptom, persons who cannot speak might only cough, or refuse to eat offending substances to let us know that something is awry. The earlier that pattern is identified and fixed, the better the person’s quality and quantity of life.

The ability to keep moving as we age is an important predictor of our life expectancy. Finding a way for those with significant physical problems to alter gravity’s impact on their body parts is the biggest challenge in any service. Remember, gravity is the factor that causes all of our soft tissue to gradually slide to the floor as we age. For those who don’t move on their own, it is the major contributor to all kinds of deformity that can then alter the function inside the body.

The ability to keep moving as we age is an important predictor of our life expectancy.

Now that the majority of individuals with significant disabilities are living outside of state-operated congregate care settings, we all have to face the (sometimes daunting) task of finding competent health care in a community that may judge the person on the basis of how he/she looks: “Mortality among people with severe cognitive impairments as well as allied medical conditions who move from institutions to the community has been the most recent issue facing states.” (Hayden, 1998).

This has led to some fairly outrageous conclusions about where people ought to be living, namely, that institutions are somehow safer for persons with complex health care issues. Sometimes we forget that many congregate care settings were sued into doing the right thing, and that competent health care was often a direct result of class action litigation. The question we need to ask, not just for people with disabilities, but for all of us, is a bit more complex. Just what does it take to assure that all of us have access to health care that assures an adequate level of wellness and safety? Being old may determine how aggressively we are treated and so too, unfortunately, may a person’s physical appearance affect these decisions. Having someone in our lives who isn’t paid to care about us is another factor that can profoundly impact on decisions about health.

One study established that early identification of health destabilization was the major factor in reducing preventable deaths in persons with complex physical disabilities (Hodges, 1984.) This study demonstrated that the following contributed significantly to effective health care management:

  • Having a person with sufficient skill, opportunity and authority to implement effective health care management.
  • Obtaining health care information sufficient to detect and act upon early patterns of health deterioration.
  • Having adequate health care advocacy to provide to persons with any level of health risk the same care that would be provided to persons without disabilities.

Most persons with profound physical and intellectual disabilities have no effective means of telling their caretakers when they do not feel well. Most community physicians and nurses have no formal training in how to assess individuals without verbal communication skills. Worse yet may be a widely-held belief on the part of the health care practitioner that these individuals may not have a life worth living. Withholding of treatment (widely practiced as Do Not Resuscitate) may be practiced more frequently than appropriate.

Those persons who have learned to communicate creatively when they cannot speak can use self-injurious behavior, such as head banging or hands-in-mouth, to tell us when they have a stomach ache. We may wind up giving these creative communicators drugs that slow down the GI tract, such as Risperdal and Prozac because we perceive them as “behavior problems.” When the person winds up with a bowel obstruction, diagnosis may be delayed because the unique form of communication is being treated rather than the root cause. 


Hayden, M.F. Mortality Among People with Mental Retardation Living in the United States: Research Review and Policy Application. Mental Retardation, Vol 36, No 5, October 1998, p. 345

Brehon Institute for Human Services THE HODGES REPORT, Tallahassee, FL: January, 1984

Addressing Safety and Preparedness for Individuals Who Take Medications

Most of the individuals we support take one or more medications which are often a critical part of a good outcome or even for continued life. As a part of responsible supportive care it is important to be aware of the potential negative effects that many medications may have. All medications have negative side effects. Some have more than others.

“An adverse drug reaction (abbreviated ADR) is a term that describes harm associated with the use of a given medications at a normal dosage during normal use. ADRs may occur following a single dose or prolonged administration of a drug, or result from the combination of two or more drugs. The meaning of this expression differs from the meaning of “side effect”, as this last expression might also imply that the effects can be beneficial.

“…in 2009, there were nearly 4.6 million drug-related visits to U.S. emergency rooms nationwide,8 with more than half due to adverse reactions to prescription medications – most of which were being taken exactly as prescribed.9 When you add in the growing numbers of people who are using these drugs recreationally or due to addiction, you begin to see the magnitude of the problem that the pharmaceutical industry is propagating”.


Specific statistics regarding negative outcomes due to adverse medication effects are surprisingly difficult to locate, even from sources such as the CDC. The easiest information to locate involves statistics about the number of deaths related to accidental or intentional (also referred to as, the patient’s fault) overdose with prescription painkillers. These now cause more deaths annually than use of all Schedule 1 (illegal with no therapeutic benefit) medications combined.

Due to the very real potential for aversive medication effects people should only take medications that provide a definite benefit.

While prescription medications need to be managed by a physician, family members, guardians and other providers of support and services have a very important role to play when it comes to medication safety. Caregivers have the distinct advantage of proximity to the person on a regular basis and they have a much better chance of noticing subtle changes that may indicate problems. There are several steps that can be taken to ensure the safest possible environment.

  1. Know each of the medications the person is taking, including over-the-counter and herbal medications. Most individuals with specialized needs take more than one type of medication. While there can be adverse effects with the use of even a single medication, the likelihood increases dramatically with multiple drugs. The fact that some medications may be obtained without a prescription does not make them safe, particularly when taken in combination with other drugs. Herbal medications and other supplements are not held to the same requirements with regard to standardization of dosage. The effects of these agents, particularly when taken with other drugs, are in many cases less well known and can be unique to the drug combination and/or the person.
  2. Know the specific reason each medication or supplement is being used. This sounds foolishly simple but it is very important. If the medication is not having the intended effect it is important to convey this information to the prescriber so appropriate changes can be made. In many cases individuals have been continued on medications unnecessarily because no one recalls whey they began taking them in the first place. Why risk the potential negative effects of a medication, not to mention the additional expense, when the medication is completely unnecessary?
  3. Keep track of changes in dosage. The most likely times for medications to exhibit negative effects are when the medication is initiated, discontinued or when dosages of the medication are changed.
  4. Familiarize individuals and/or their caregivers with the known side-effects of each of their medications. Dry mouth, constipation, bruising, dizziness, uncontrolled abnormal movements, behavioral changes and many, many other side-effects need to be reported to the prescriber at the earliest possible time. Encourage medication users and/or their caregivers to trust their gut when it comes to reporting their concerns. People are not obliged to stick to the listed side-effects of the medications they take and have been known on occasion to make up their own.
  5. Be a good advocate. Due to the very real potential for aversive medication effects people should only take medications that provide a definite benefit. While it is inappropriate to dictate care to the prescriber, all but the most unreasonable physicians will take a few moments to listen to concerns of their patients or their guardians. Negative outcomes can often be traced back to a failure to communicate valuable information to the prescriber.
  6. Follow each of the above steps not just for the individuals you serve but also for yourself and your loved ones. While people with numerous health issues are more likely to experience complications with medications, anyone can have problems, up to and including death. In many cases this is preventable with a small degree of vigilance.