The Fatal Five refers to the top five disorders linked to preventable deaths of individuals in congregate care settings or in community based residential settings. While the issues can differ in order of frequency depending on the population being represented, the five conditions most likely to result in death or health deterioration for persons with Intellectual and Developmental disabilities are:
- Bowel Obstruction
Bowel Obstruction is the most common cause of preventable death in community settings. The most important root cause of bowel obstruction is the use of multiple drugs with constipating side effects. Add to this the fact that most of us have dietary habits that contribute to the problem, chief among them, diets that are low in fiber and adequate Fluids. Ironically, medications intended to improve elimination often place the individual at higher risk for impaired bowel function. Adequate active movement or exercise is also important to the gut. Controlling these factors, along with training caretakers to recognize the signs and symptoms of bowel problems at the earliest moment can greatly reduce occurrences of death from bowel obstruction.
Gastroesophageal reflux disease (GERD) is the backing up of stomach contents, including acid, into the esophagus. GERD is undiagnosed in the majority of persons, including those without disabilities, until major harm has been done to the bottom of the esophagus. Medications that cause constipation also contribute to GERD. Individuals who are overweight, particularly when they carry excess weight around the abdomen or wear clothing that is too tight have a higher risk of GERD. Ill-advised dietary choices, immobility and improper positioning also contribute greatly to the incidence of GERD. As this disorder continues without treatment discreet or frank aspiration, life-threatening GI bleeding and esophageal cancer become increasingly common.
Aspiration is the most common cause of death in institutional settings, including nursing homes and large group care settings for persons with IDD. Aspiration often begins subtly and damages increasing portions of the lungs. Aspiration pneumonia is a common discharge diagnosis following hospitalization. As the person's respiratory status becomes compromised feeding tubes, which carry their own increased risks, are often utilized. Other factors which may lead to aspiration are poor body positioning, particularly in individuals who cannot control their own movements well, and behavioral issues related to eating.
Individuals who are overweight, particularly when they carry excess weight around the abdomen or wear clothing that is too tight have a higher risk GERD.
Individuals who do not swallow well are particularly likely to refuse fluids or indicate fear when they get them, often resulting in dehydration. Dehydration is also likely when staff or family try to restrict fluids to prevent incontinence, not realizing that lack of fluids can contribute to constipation and increased seizure frequency, not to mention drug toxicity and other health problems.
Seizure deaths can occur from drug toxicity or from uncontrolled seizures. SUDEP, or sudden unexplained death in epilepsy, occurs on a fairly regular basis and for reasons that medical science has yet to explain. Life expectancy for persons with active seizure disorders has shown to be up to 10 years less than those without epilepsy.
In future issues of this newsletter we will address several of these issues individually and in more depth, including a discussion of ways to prevent the incidence of these and other issues that complicate the care of those we serve.
Obesity has become so common in America, we think it's normal when we see extremely overweight people. And, how do they find that many people to film the show "My 600 Pound Life" season after season?
Obesity is defined by the CDC as a BMI over 30 and severe obesity is a BMI over 40. Sometimes health care providers look at waist circumference as well. In women a waist circumference of > 35" and males > 40" is considered obese. We need to readjust our acceptance of obesity. Not because of the way the person looks, that is absolutely not what I mean, I mean the health concerns that obesity causes.
Many of the persons receiving supports may have a syndrome that is associated with obesity but we still need to manage the issue. Most of you are probably familiar with Prader Willi Syndrome and Down Syndrome (Trisomy 21). Both of these syndromes have a problem with obesity. Nevertheless, we can try to manage a person's weight so that they are just a little heavy, but not considered unhealthy. Diet and exercise management is extremely important, not only to prevent weight gain, but also to manage constipation, hypertension, diabetes, bone health and many other conditions. Remember that eating is so much more than the intake of food, it is a social event, time for celebration and also the enjoyment of wonderful new foods.
Prader Willi Syndrome and Down Syndrome (Trisomy 21). Both of these syndromes have a problem with obesity.
Portion control, especially what we see in typical restaurants, is usually at least 2 -4 times more than the appropriate portion size. If we were served 1 cup of spaghetti on our plates, we would be very upset but that is the amount of pasta in a serving. Learning about and teaching portion sizes can be very constructive and this website from NIH is helpful. NIH Website.
Laboratory testing to monitor blood glucose, lipids, kidney function and other key indicators must be performed regularly to allow for early intervention when a problem is first identified. Face-to-face assessments with nurses in the community and the physician or a physician extender must occur regularly to help prevent increased death and other diseases.
Remember, the only person we can change is ourselves. But we can become positively contagious and set the example for others by eating in a healthy way at home with guests or if you go out to a restaurant. Be sure when shopping for food you go with the person receiving supports and teach them about portion sizes and how to read food labels. There are very simple and easy ways to teach portion control. Associate size with something they are familiar with in their environment, such as a cupcake wrapper or the tip of their finger or the palm of their hand.
I don't know all answers to eliminating obesity, but this is a good start.
Taking a lot of medications is a very real problem among persons with Intellectual and Developmental Disabilities. One pharmacy that only provides services to persons with IDD indicates their average number of medications per person is in double digits! No person can consume that many medications without experiencing side effects, drug:drug interactions or drug:food interactions.
Oftentimes, the medications that are frequently prescribed are anti- psychotic medications. The first-generation anti-psychotic medications consist of drugs like Thorazine (chlorpromazine), Haldol (haloperidol) and Mellaril (thioridazine) among others. These medications have a nasty side effect of Tardive Dyskinesia or TD. TD is a very unpleasant side effect and can certainly bring social attention and embarrassment, but it generally has little effect on mortality. The second-generation anti-psychotic medications such as Clozaril (clozapine), Zyprexa (olanzapine), Risperdal (risperidone) and Abilify (aripiprazole) have a different side effect called Metabolic Syndrome. Unlike TD, Metabolic Syndrome can and does kill people.
Metabolic Syndrome is a cluster of disease processes. It consists of Diabetes Mellitus, Hypertension, Obesity, elevated Triglycerides and decreased HDL cholesterol. These diseases may be controlled, but often aren't, due to either lack of awareness by health care providers, lack of aggressive treatment for persons with IDD, lack of ability to purchase high quality foods and plan nutritious meals or lack of compliance among persons.
It is critical that Metabolic Syndrome be managed and controlled to the best of our ability. Poorly controlled Diabetes Mellitus can cause blindness, kidney disease and failure, poor wound healing and loss of limbs. Hypertension that is not well managed can also cause kidney failure along with other serious and life-threatening conditions like aneurysms, strokes and heart failure. Obesity contributes to heart disease, the development of hypertension and diabetes and social unacceptance. Poor regulation of cholesterol and triglycerides increases stroke and heart attack risk.
It is critical that Metabolic Syndrome be managed and controlled to the best of our ability.
Laboratory testing to monitor blood glucose, lipids, kidney function and other key indicators must be performed regularly to allow for early intervention when a problem is first identified. Face-to-face assessments with nurses in the community and the physician or a physician extender must occur regularly to help prevent increased death and other diseases.
Early recognition of Metabolic Syndrome may save lives. All providers of services should remember that although the 2nd generation anti-psychotics are safer than the 1st generation, they are not without their own set of issues. Quite often these medications significantly improve the quality of life for a person with IDD, but the potential side effects must be recognized and managed.
Learning is generally a conscious act. We take classes, we read articles related to our work, we go to seminars or listen to webinars. Lifelong learning is a concept that we not only use in our lives to better ourselves, but it is built in to the support process for the people we provide services to.
One of the major things we do in our support is to teach and lead. Maybe you don't think of yourself as a leader or a teacher. You might think that is the responsibility of the people above you, but you are wrong. All of us lead and teach, no matter what position we are in. It is often not a conscious act.
If we are yelling at another staff in a conversation, are we not sending a message (hence, leading or teaching) that it is OK to yell at someone else? But what happens if a person receiving supports starts yelling at their peer? Yes, you got it – we "reprimand" or correct them and give them a lecture on how that is not appropriate. I had to burst out in laughter one time when a direct support person said "Gayle is so darn bossy. She thinks she's staff." My reply was "And if she thinks she's staff and is bossy, just who did she learn that from?" It took the DSP aback that the staff indeed were "teaching" Gayle to be bossy.
Learning doesn't have to be boring and related to our work.
Not only do we need to provide lifelong learning to the persons we support, but we need to do this for ourselves as well. It keeps our brain active and engaged. Learning doesn't have to be boring and related to our work. If you love to garden, learning more about ideal planting times, soil types, water requirements, light requirements, fertilizer and many other things will help make your endeavor more successful. Doing puzzles and yes, even video games, keep our brain active and helps maintain hand/eye coordination.
Lifelong learning is so important to all persons' lives. It makes us all a better person, friend, teacher, leader, parent or spouse. I hope you all learn at least one new thing every day. It may be a very small thing, or it might be something that profoundly affects your life. The point is, always accept learning opportunities when offered. There are so many different ways to gain knowledge without ever opening up another school book.
We are all exposed to different syndromes every day in our work. A syndrome is a set of symptoms that consistently occur together. Dementia is like a syndrome but not all people lose the same skills consistently. With dementia, there can be a wide range of symptoms associated with a decline in memory or other cognitive skills that when presented together are severe enough to reduce a person's ability to perform everyday tasks. You may also hear dementia referred to as Alzheimer's Disease. Alzheimer's is just one of many types of dementia, but it does account for 60% – 80% of the cases.
Alzheimer's is just one of many types of dementia, but it does account for 60% – 80% of the cases.
In the neuro-typical population, we expect to see the onset of dementia after the age of 65. However, since persons with I/DD age quicker than neuro-typical peers, the onset of their dementia may occur at a much earlier age, some as low as 35 in certain I/DD syndromes and diagnoses. For a person with I/DD never assume that the changes they are exhibiting are part of their diagnosis or syndrome. Always know the baseline functioning of the person so you can pick up on subtle changes. The typical screens for dementia are generally not appropriate for persons with I/DD because often they never did know the answer to the question in the screening, not just since they started showing symptoms.
Some of the declines to watch for are:
- Confusion or problems with recent memory. Long term memory is generally not affected.
- Getting lost in familiar places.
- Wandering or elopement.
- Decline in ability to assist with or independently complete activities of daily living, including toileting.
- Inappropriate emotional response—crying when they are happy or clapping and smiling when there is a solemn occasion.
- Unable to follow simple instructions.
- Loss of ability to identify objects.
- Change in personality.
Anyone would dread such a diagnosis and may experience depression. Death is always the outcome of dementia. Disabilities, mental health and behavioral issues may become more difficult to manage. The dementia diagnosis may have an emotional effect on the staff as well. One might even see depression signs in the staff as they slowly lose someone who helps fulfill their life.
But we can make this whole dementia process more manageable and be proactive. Let's find out the desires and dreams of the person and try our best to bring those to fruition. Let us do things and provide activities that will delight the person and bring happiness to all. Sometimes we have to be determined and dare to be a strong advocate for the person to continue to live an inclusive and fulfilled life until they are no longer able to do so.
Often when we hear "behavior" we roll our eyes, knowing we have to deal with Janice and her behavior of the day. But behavior can be so many different things. We all display it, often we use it instead of words. Everyone knows what screaming and stomping the floor signifies. A definition of behavior is: the way in which an animal or person acts in response to a particular situation or stimulus.
Instead of labeling people as having bad or uncontrolled behavior, maybe we should play detective. If a person cannot use words to communicate, behavior is often their only means of getting their point across. We all communicate non-verbally and behavior is often how we do that.
If a person cannot use words to communicate, behavior is often their only means of getting their point across.
This non-verbal response is so often a form of communication. It is so frustrating for the person to train every new staff member. When traveling coast to coast training, I ask if anyone has turnover in their agency and every hand goes up! The person being supported is constantly training new staff about what they are attempting to communicate, and it really is a pain in the rear for them! When you discover what a certain behavior is portraying, write it down somewhere. If the person becomes very confused and wanders every time they have a UTI, write it down somewhere. This way we can get the person treatment earlier and eliminate the behavior.
What if the person engages in head banging when the allergy counts are high, and they have a terrific sinus headache? Again, write it down somewhere accessible. Anytime someone new comes in to work, they could look at the documentation and the light bulb would immediately come on instead of the person having to suffer for days or months and be put on multiple psychotropic meds because of "behavior".
Having a "behavior" should not mean automatically being put on more medications. It should kick in an investigative response to see what it means.
If you are interested in learning more about behaviors and how they are a form of communication, join the HRS webinar on March 14 "Actions Speak Louder than Words". It will help you to perform your job better!
To put it simply sepsis is a term used to describe a serious illness characterized by a bacterial infection in the bloodstream. You might've heard the term blood poisoning, that's another term for sepsis.
Sources of sepsis are urinary tract infection and pneumonia. That's why it's so important to recognize the signs of these conditions and get them treated early. Earlier treatment of these and other infections may prevent someone from becoming septic.
If someone is getting septic, you might see them looking pale, sweaty, their heart rate may go up, they could be breathing harder, weak and confused. You might also see blotchiness of their skin and a high fever.
Sepsis is a medical emergency and needs to be treated immediately. Every hour that treatment is delayed increases the risk of death by 10 percent. To use a phrase you probably heard In other webinars and e-learning modules by HRS U "when in doubt, send them out!" That's an important thing to remember.
Join us for our upcoming webinar "The Fatal Five, Plus!". In that webinar you'll learn about sepsis and several other very important medical conditions that are common in people with intellectual and developmental disabilities. You'll learn how to recognize them early and help people that you support live happier and healthier lives.
Nutritional supports take a very broad look at the process of eating and digestion. Many people that are receiving services require some assistance with the intake of food. They may need their food specially prepared or need assistance with eating. Safety is the biggest concern as persons become more dependent on others for eating.
Mealtimes and eating may become unpleasant for a person. This may be due to pain or discomfort, swallowing difficulties or even that they have had to have a feeding tube placed and can no longer enjoy the taste of food. Whatever is causing that person to find meals disagreeable should be investigated and the cause eliminated if possible. Drill down to find out if the problem is related to the intake of food, the processing or absorption of the food or even the excretion of waste.
Safety is the biggest concern as persons become more dependent on others for eating.
When we look at the intake of food, we are focusing on getting the food safely in the mouth, down the throat and esophagus and into the stomach. There are many things that can go wrong here because of the high level of muscle and nervous system coordination that is required to get the food from plate to the stomach. Difficulty swallowing and aspiration is one of the big concerns.
If the person does not have good lip closure, strong tongue control or adequate nerve supply to the throat, choking and aspiration are a real threat to the person's life and overall health. If the muscle at the top of the stomach doesn't close well, reflux becomes an issue. When the person has significant heartburn and stomach pain, they don't feel very much like eating.
Processing of food and absorption of nutrients can be problematic as well. It takes 4 to 6 hours for food to completely be digested enough to leave the stomach. High fat meals require the longest time. Often positioning a person on their right side with their trunk and head elevated at least 30 degrees helps the stomach to empty. This also may help to reduce the frequency of reflux by helping the stomach to drain rather than push food back up into the esophagus.
The formation and elimination of bowel movements certainly causes difficulties for people that we serve. This doesn't even scratch the surface of things that can cause difficulties at mealtimes. The important thing to be aware of is, does the person have a problem with intake, processing, absorption or elimination? Once the problem is identified always take action to see what you can do to resolve the problem to make eating and mealtimes more pleasurable.
We have discussed the problems with constipation and bowel obstructions in the past. I'm sure we will produce more articles on these topics in the future because it is such a prevalent issue. If you would like to read any of those historical articles, go to https://hrstonline.com and click "Article Library" at the bottom right of the page.
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:
- 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.
Two separate, independent studies have been completed reviewing the Health Risk Screening Tool (HRST) to both mortality trends and life expectancy trends. Both studies support a correlation between the HRST Health Care Level and mortality dynamics.
One of the independent studies is an ongoing examination being conducted by the Georgia Department of Behavioral Health and Developmental Disabilities (DBHDD). 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 the findings of Georgia's research at the 2017 National Home and Community Based Services (HCBS) Conference this August in Baltimore, MD. The presentation was standing-room-only.
Imagine if these efforts could lead to I/DD mortality rates that are similar to the general population.
Georgia DBHDD has used the HRST as a frame of reference for the last four years in the Department's annual Mortality Reports. Each year the correlation between health risk score and mortality has remained consistent.
The primary results of the GA DBHDD analyses indicate two main points. First, models for 2013 to 2016 are very similar in that age and health risk scores were the two main predictors of death (and not gender or residential setting.) Second, the model indicates possible opportunities to identify risk of death associated with age and HRST scores and to determine additional services, supports or actions needed.
The resounding audience question was, "Now that we know this, what can we do with the information?" Not only can you adjust resources to mitigate risk, but coordinate and design specific programs for people identified as presenting high risk in a range of areas. This could help with training direct support staff and designing targeted interventions.
This research and its potential impact on preventable deaths among those with I/DD is only the beginning! This could have powerful implications for health and safety of high risk individuals with disabilities, informing system-wide improvements in both surveillance and response to risk. Imagine if these efforts could lead to I/DD mortality rates that are similar to the general population. This data challenges us to envision a future for those with I/DD that is much different than the past. A future where the standard is a healthy, well-lived life!
For most all of us, getting up and eating our daily meals, plus a few snacks here and there, is something we take for granted. Running through a drive-thru window for our favorite beverage on the way to work is routine. But what if our meals had to come through a tube, or be pureed or liquids thickened? That would certainly turn our daily routine upside down!
As service providers, some of the people you provide supports for receive tube feedings or their food and fluids are otherwise specially prepared. This is their routine. Doesn't sound very appetizing, does it? What if you could help a person MAYBE eat a little more independently or have a more typical presentation of their meals and drinks? I think you would agree that would be the better way to go. Physical and nutritional supports may help you do that.
What if you could help a person MAYBE eat a little more independently or have a more typical presentation of their meals and drinks?
Don't just think of physical supports as a specialized chair or positioning device. Physical supports are a whole range of positions that a person can assume throughout the 24-hour day to help assist that person move better. It may consist of placing a person in a position where they are required to reach out for an item or loosen up a tight joint. This might allow him or her to eventually use that arm to eat by being able to reach their utensils or a glass of fluid. As a caregiver, you may be trained in special techniques to help control jaw movement or teach a person to drink from a straw. These special positions and procedures are often used by physical and occupational therapists to achieve a more independent eating style for the person.
There are many ways that therapists can assist a person with eating. Therapeutic positioning is one of the means they use to help a person gain more control. Therapeutic positioning involves putting a person into a "working" position. A working position is one where muscles, bones and joints must "work" to hold them in that position. These positions help reform those connections and the movement ability. A person should be in working positions throughout the entire day. The appropriate therapist prescribes what those positions should look like.
Therapists may also help persons with adaptive feeding methods or other physical supports. There are many eating utensils that enable a person to eat more independently. You may be familiar with some items such as built up handles on a spoon or a rocker knife, but there are a lot of other devices available. Sometimes, a person could eat more by mouth with special presentation techniques. The therapist can determine if they have one side of the mouth that is stronger than the other and determine where food needs to be placed on the tongue. Another method is to trigger reflexes of the lips in order for a person to pull food off of a utensil.
When you think of physical supports, do you only think of things like wedges, custom fit wheel chairs and seat belts? If that's the case, you are missing out on a lot of things you can do to improve the lives of the people you serve.
Physical Supports allows you to provide the external supports necessary throughout the 24-hour day to help the person become more functional. Think about the supports you need throughout the day. Are you a little on the shorter side and need someone else to reach the top shelf of the cabinet? What about an extra pillow at night to prop up your arm so it doesn't go to sleep? Glasses in order to read? These are very minor, but they are still physical supports.
When we are on a diet, we don't just diet 3 days a week or only at meals then binge the rest of the time. It's the same principle when a person is getting physical therapy: we can't just let them be inactive and have therapy 3 times a week. During the time they are not actively receiving P.T. we can be placing the person in ACTIVE or WORKING positions. If a dead person could maintain the position, it is not an "active" or "working" position. Just lying on your side is not an active position. Putting someone into a prone on forearms position so that they have to hold their head up is a working position.
Physical Supports allows you to provide the external supports necessary throughout the 24-hour day to help the person become more functional.
We often can see these positions in infants as they develop. The infant will start raising its arms up or holding up their head on their own. They can't hold these positions for long until they build up strength. They are building against gravity. A person that has a contracture in an elbow for instance, may have their arm placed in a working position that allows gravitational force to help move the arm down into a more usable position.
There are also physical supports that are not active. Positioning a person to prevent pressure injuries is a physical support. Sometimes we do it with special equipment, sometimes it is just with bed pillows. Just know that we are positioning them for prevention when they are in EVERY position throughout their entire day, not just at night.
Physical supports can help prevent pneumonia, help with bowel function, keep skin healthy, help the person to become more independent and many, many other things. Please keep in mind that even the most minor change can make an enormous difference in someone's life.
I, like many of you, have sat through my fair share of boring trainings. Raise your hand if you dread that annual mandated refresher training. Me! I never thought that training would end up saving someone's life…
Let me back up. I've worked as a DSP, House Manager, and QIDP here in Illinois. On that fateful day, most of the shift goes by relatively uneventfully. Around 2 a.m. you start going a little cross-eyed, right? So I took a break from rearranging the med closet and went to do hourly checks.
We had one resident in particular, Mellie*, who would awake periodically throughout the night so it was not uncommon to hear her up in her room singing or laughing at something on TV. She had just been on home visit two days ago with her sister so she had been in a particularly good mood the last few days.
If I didn't do that refresher training and been aware of what to look for, Mellie may have become septic by morning and this story would be a lot different.
When I stopped by her door though I heard grumbling and decided to knock. Mellie was awake, tossing and turning in her bed, sweating, and appeared feverish. I asked if she was feeling alright and she said "no." Okay, deep breath, don't panic, what do I do first? I'm here all alone, it's the middle of the night, how do I handle this? Call the nurse. Okay, but she's going to want vitals so I need to get those first.
Back to the med closet. Four vitals, wait, what are they again? Blood pressure, pulse, temp, respiration rate. Thank you, nurse Sherry, for burning those into the back of my head during the refresher. Temp and respirations were both high, and when I went to get her blood pressure and pulse I noticed blue discoloration on her nails. Okay, wait. Fast breathing, fever, bluish discoloration… Pneumonia? A quick call to Sherry and 911 and off to the ER we went followed by a 5-day hospital stay due to aspiration pneumonia.
While on home visit, Mellie had briefly choked on some mashed potatoes. Since she recovered quickly with no reported discomfort or pain, her sister hadn't thought to mention it. If I didn't do that refresher training and been aware of what to look for, Mellie may have become septic by morning and this story would be a lot different.
These types of life and death calls are made every single day by frontline staff and are why it's so critical that you have that second cup of coffee before attending a training and let this story prevent you from nodding off.
*: Mellie is not the person's real name, it was changed for privacy.
Nurses are very familiar with evidence-based practice. It is using the most recent and best evidence in the decision-making process for patient care. Part of evidence-based practice is using the most current standardized tools for assessment or screenings in determining individualized risks.
There are many assessments and screenings that are completed on individuals with IDD. Some are completed by behavior analysts, some by QDDPs and yet others by nurses or other members of the interdisciplinary team. It is important that standardized assessments/screenings be used. Utilizing a standardized assessment or screening means it has been tested and the results have been validated. A validated tool means it really does what it is supposed to do. If a tool has been validated to screen for depression, the result truly determines if the person meets criteria for depression or not.
Interrater reliability is also a key factor to look for when utilizing any assessment/screen. If Person A screens Individual XYZ, and Person B also screens that same individual, the results should be the same. Interrater reliability means that two people given the same information should get the same results. This shows the tool is not open to wide interpretation.
There are many standardized tools that are used in the field of IDD. Many we know by the acronyms only and if we do not personally administer the tools, we may not know what those abbreviations stand for or what the tools are even used for.
A validated tool means it really does what it is supposed to do. If a tool has been validated to screen for depression, the result truly determines if the person meets criteria for depression or not.
Here are some of the common ones:
- Abnormal Involuntary Movement Scale (AIMS): A scale used to determine if signs or symptoms of tardive dyskinesia are present. Get AIMS Tool
- Braden Scale: An assessment to determine a person's risk for developing pressure ulcers. It evaluates 6 areas that contribute to risk. Get Braden Scale
- Bristol Stool Chart: A chart of standard descriptions for bowel movements. It describes seven different types of bowel movements and indicates what constipation, diarrhea and normal stool looks like. Get Bristol Stool Chart
- Dyskinesia Identification System Condensed User Scale (DISCUS): Another scale used to determine if signs or symptoms of tardive dyskinesia are present. Get the DISCUS Tool
- Health Risk Screening Tool (HRST): A screening tool to determine individual health risk and identify early health destabilization. See HRST Tool
- Inventory for Client and Agency Planning (ICAP): Measures motor skills, personal living skills, community living skills, social and communication skills, and broad independence as well as eight categories of maladaptive behavior. See ICAP Tool
- Monitoring of Side Effects Scale (MOSES) – Measures medication side effects, particularly psychiatric medications. Get MOSES Tool
- Supports Intensity Scale-A (SIS-A): Measures the individual's support needs in personal, work-related, and social activities, in order to identify and describe the types and intensity of the supports an individual requires. See SIS Tool
This short list describes just some of the standardized tools that you may find useful (or are used) in your setting. Hopefully this helps untangle all those abbreviations!
Quality – what is it? Most people will say they can't describe or define it, but they know it when they see it. Do you know what quality is? Do you practice continuous quality improvement in your daily work? Does your agency have a formal program? Whew, that's a lot of questions, let's see if we can answer some of them.
"Quality" as defined by the Merriam Webster dictionary is "a degree of excellence." In the BusinessDictionary.com it is, "a measure of excellence or a state of being free from defects, deficiencies and significant variations." Depending on our own personal standards, excellence is nebulous and may be very individualized. What we are striving for is excellence in providing supports to individuals who are physically or mentally disabled or challenged. We want both quality of life and quality of health. If we work hard enough and stay aware, we can achieve both.
In all our everyday activities, whether at work or in our personal lives, we should always practice continuous quality improvement. Being better today than yesterday is sometimes a struggle. Maybe you're happy with the status quo and don't want to change. There is an old saying that, "no one likes change except a baby with a dirty diaper". Change is difficult, it takes us out of our comfort zones sometimes. But if you make small, slow changes, it can be easy and fun.
In all our everyday activities, whether at work or in our personal lives, we should always practice continuous quality improvement.
The first thing to practicing quality improvement is to recognize that change is needed. Some agencies are still not practicing person centered thinking or using current terminology. I know that politically-correct terms seem to alter daily, but you can always ask a person what they wish to be called, or how they want to be addressed. If you are still using the terminology "mental retardation," it is time for a change. The correct overall categorical terminology is "intellectually disabled" or "intellectually and developmentally disabled." There is a federal law that mandates that terminology replaces the term ‘mental retardation' with "intellectual disability" (federal statute, Public Law 111-256, Rosa's law.) You can start your quality change by teaching others about this wording. Is speaking out to others not your thing? Well, start with one person and tell them. Then read up on why it is important. Then tell a group of two people, then continue to spread the word and grow from there.
Another quality improvement may be looking at meal practices. Is there a nutritious meal planned? Does it meet the current "my plate" guidelines? If not, how can you change that? What are ways that you can make eating salads and vegetables more appealing? Read and research to get some ideas and tips. Many of you are on Facebook or Pinterest or Twitter. Follow some social media pages related to nutrition. Save or write down some of the recipes posted. For example, I found an excellent recipe for pizza crust using cauliflower and parmesan cheese. A coworker's four-year-old child HATES vegetables and yet ate almost a whole pizza with this crust. Someone hate salads? Add tomatoes and yellow or orange peppers strips to liven it up- adding color makes food more appealing. Research the "my plate" guidelines at https://www.choosemyplate.gov/.
These are just some examples but there are many ways you can take steps to improve the quality of your own work. Be the first and set the example! Step up and make the necessary changes to improve, even if it may be uncomfortable.
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.
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
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.
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!
Document and report any and all changes in the individuals you serve
It 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.
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!
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.
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." 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.
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.
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.
- 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.
- 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?
- 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.
- 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.
- 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.
- 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.
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.
Primary Functions of the HRST and SIS
Since the last newsletter we received a lot of interest regarding the use of the HRST and the SIS. We have included some information below about how these two tools work together.
The HRST is a reliable web-based rating instrument developed to screen for health risks associated with a wide variety of disabilities, including developmental disabilities, physical disabilities, disabilities associated with aging, and many other conditions, which specifically affect systems of the body and the person's ability to engage in functional activities. It is designed to primarily detect destabilization EARLY and PREVENT preventable illness and even death. It has the ability to detect health risk that can lead to illness and death. It accomplishes this by having the interviewer rate 22 rating items that span over 5 categories: Functional Status, Behavior, Physiological, Safety, and Frequency of Services. Once scoring is complete the HRST produces an overall Health Care Level (HCL) that corresponds to the person's risk level. The HRST also produces a set of Considerations that assist the team in identifying other professional services and training that may be needed for the person based off the scoring of the 22 items. The HRST has been shown to reduce morbidity, reduce costs related to service delivery, lead to more accurate parallel of supports/services to needs of the person, better staffing alignment based off of identified needs, greater identification of at-risk individuals, and improved quality of life for the person due to better overall health.
Developed, tested, and normed by the American Association on Intellectual and Developmental Disabilities (AAIDD), the Supports Intensity Scale is a unique supports identifying tool for ages 16 and older. It primarily seeks to assess and measure the support needs for persons with intellectual and developmental disabilities to engage in a given activity at the same level of involvement as anyone without a disability of relative age in his or her community (also defined as, Success). The SIS covers a number of life activities some of which have historically been unassociated with, or participated in, by people with disabilities. The interviewer is tasked with exploring a number of activities in the sections of Home Living, Community Living, Lifelong Learning, Employment, Health and Safety, Social and Protection/Advocacy. The interviewer then works with the team to identify what Type of Support, Frequencyof Support, and Daily Support Time would be needed to ensure success. The majority of the tool is scored in this manner. The SIS helps identify the supports needed for maximum contribution in everyday tasks. It also addresses stereotypical norms by refocusing, not on the deficits of the person, but rather on accurate supports to engage in life like others do.
Using HRST and SIS
Due to the intended nature and purpose of the HRST and the SIS, users may find that these two tools work well together in a number of ways. Each tool takes a different approach when evaluating the person.
Both tools can be used to:
- Develop Individualized Support Plans.
- Allocate fiscal resources based of identified risk and support level.
- Allocate staff and personnel.
- Qualify for advanced funding and supports.
- Identify quality of life dynamics.
- Trend data.
- Assist in continuity of care.
- Aid in transition efforts from higher levels of care.
The first person I met who had severe cerebral palsy also had a Ph.D. A friend and colleague of my mother's, she was the Director of Special Programs for individuals with complex sensorimotor issues at Glenwood State Hospital School in Southwest Iowa. Visits to her home, where she lived with the assistance of a personal aide, were pleasant interludes where the adults conversed over coffee and my brother and I played in the shady backyard. They were an integral part of my definition of a normal childhood.
Those who became involved in the field by the mid 1960's (yes, there are still several out there) did so at an extraordinary time in history as it relates to people with disabilities. It was the tail-end of the time when families automatically handed "hopelessly crippled" over children at birth, many to see them only a few times a year, if ever. It was a time when individuals in custodial settings, including prisons, were literally regarded by the system as legally dead in terms of their personal rights. In other words, they had none. Over the past fifty or so years we have been treated to a front-row seat at the growth spurt in our understanding and treatment of people with specialized needs.
In 1965 a person with Down Syndrome could expect to live only until their mid-twenties, 75% of individuals with cerebral palsy were also diagnosed as having an intellectual disability, as opposed to 25% today. If you had hit the average citizen with the term "mainstreaming," they would probably have thought you were referring to an innovation in the field of civil engineering. In 2014 people across a wide range of disabilities can expect to live a life span equal to or approaching that of the population at large. They can expect to be college graduates, business owners and valuable members of their extended communities.
HRS Inc's stated goal over the past several years has always been to prevent those negative health events that are preventable through identification and appropriate intervention at the earliest possible point.
Technology and medicine have made great strides in the past fifty years. Access to education and employment are greatly improved and more people are remaining with families, guardians or living independently with supports. Wonderful things, all of them, but we face continued and growing concerns over community acceptance and access to needed services. It therefore begs the question, how do we keep what we've gained and continue to progress? The answer to these questions will never be simple but they can be distilled down to some very basic elements: Reduce the need for intervention when and wherever possible as well as support and promote things that are already working.
Our friend from the early days in Southwest Iowa came to share our common path by design, not by accident. She had a mother who loved and believed in her at a time when her family, her community and virtually every health care professional probably considered her, well, let's be kind and say…unique. She made every possible resource available to her daughter against great odds and she, her daughter and the special needs community were rewarded by her vision and perseverance. In many ways we are and will continue to face increasing challenges today and into the future. Funds are dwindling and there is still much ground to be gained in enjoying access to the wide world. If it could be done in the 50's and 60's it can certainly be done now. How we choose to do so will continue to define the path of this community.
Building a Better Future
The next several articles in future newsletters will deal with each of the areas of the HRST and discuss how they can be used to identify both areas of need and non-need. "Normal" is such a loaded word, but every person in the world is afflicted with it invarying amounts and in one form or another. HRS Inc's stated goal over the past several years has always been to prevent those negative health events that are preventable through identification and appropriate intervention at the earliest possible point. The unspoken opposite side of that is that we don't hassle people when they don't need it. Unnecessary interventions can be an expensive nuisance. They often prevent the public at large from seeing that they share more similarities than differences with individuals with special needs. They can also prevent gains in an individual's personal growth and development. Nobody who works in the supportive care field and most compassionate humans do not want to see anyone go without the things they genuinely need. With good advocacy and the proper supports it doesn't have to happen.
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.
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.
Where did all the water go? Dehydration occurs when the body loses more fluid than it takes in, resulting in insufficient water and other fluids to perform normal functions. "Severe dehydration can lead to changes in the body's chemistry and kidney failure which may be life-threatening." This article will focus on issues that can be recognized by direct caregivers and discuss ways to reduce the chances for the issue to become problematic.
"Anyone may become dehydrated, but young children, older adults and people with chronic illnesses are most at risk." The most common cause of dehydration is inadequate fluid intake. It is important to be aware of and stop those processes that result in the loss of water from the body and to replace fluids regularly. Our bodies require approximately 2 to 3 liters of fluid per day, which must be replaced by the water found in the foods and beverages we consume. Several normal body functions result in a net loss of water from the body, including sweating, urination, defecation and loss of water vapor due to respiration. On average most people make (and swallow) approximately one quart of saliva per day. Individuals who lose saliva through drooling have an enhanced risk of dehydration. The rate of fluid loss can be enhanced, sometimes dangerously, by vomiting, diarrhea and excessive sweating. When a person complains of thirst, he/she may already be mildly dehydrated.
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
Dehydration is an extremely common finding in individuals seen in the emergency room. Recognition of the problem is the first step to taking action to reverse it.
There are several medications that can increase the loss of water from the body. Many of them are available over the counter and are frequently used by many people. Diuretic medications are most often used to reduce blood pressure, decrease edema (swelling) or reduce excessive pressure in the eyes. Very simply stated, these medications cause elimination of excess fluid via the kidneys. Medications with anti-cholinergic properties perform a variety of functions by blocking different targets in the nervous system, either intentionally or as a side-effect. These medications include those that are taken for allergies, congestion, diarrhea, dizziness, urinary urgency/frequency, muscular relaxation, movement disorders, dementia and psychiatric purposes (just to name a few.) Many anti-cholinergic medications are associated with an enhanced risk of dehydration. It is important to educate individuals who take these medications and their caregivers to be aware the side effects of these medications
How Do We Tell When Someone is Becoming Dehydrated?
Dehydration is an extremely common finding in individuals seen in the emergency room. Recognition of the problem is the first step to taking action to reverse it.
Early signs and symptoms of dehydration – teach caregivers to monitor for the following:
- Thirst/dry mouth—Ask the person if they can moisten their lips with their tongue.
- Weakness or light—headedness – Does the person report these or act differently than normal?
- Decreased urination—Time to get into their business.
- Weak or rapid pulse—Easy to train caregivers to measure.
- Constipation—Again, back in their business... sorry.
Signs of more severe dehydration can occur rapidly under the right circumstances and should immediately be brought to the attention of a licensed health care professional:
- Irritability, disorientation, extreme fatigue
- Hypotension (low blood pressure)
- Rapid weight loss (10% or more of usual body weight)
- Sunken eyes
- Darkened urine, urinary cessation
- "Tenting" of skin
- Bowel impaction or obstruction
Water is the best source of fluid when it comes to re-hydrating the body. Many fruits and vegetables also have a high water content. Other liquids provide water, but often with one or more consequence attached. Milk and liquid dairy products contain protein and other nutrients but can add to the caloric intake of individuals who have weight problems. Juices have vitamins and, in some cases, fiber, but may be a source of excess sugar. These can be useful sources of fluids but calories and sugar content should be taken into account when they are consumed. Coffee, tea, sodas and other soft drinks may contain caffeine and/or excess acid, both of which may contribute to dehydration. Alcoholic beverages have a diuretic effect. These beverages should NOT be counted on as hydrating fluids. In fact, additional fluids (preferably water) should be consumed along with them.
It is important to educate individuals and/or their caregivers about the effects of medications that may contribute to dehydration. They should be given information about:
- How to recognize the signs and symptoms of excessive fluid loss and dehydration from all potential sources.
- How to give additional fluids to compensate for fluid loss.
- When to report signs and symptoms to a licensed health care provider, including specific information about whom to contact.
- How to document incidents associated with dehydration or any other incidents related to nutritional compromise.
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:
- 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
- 2 cups raisins
- 3¼ cup prunes with juice
- ¼ cup honey
- 1 tsp. vanilla
- ½ cup apple juice
- Soak overnight, then drain, place in food processor for 3 minutes
- Serving size-2 ½ ounces daily in the morning
Servings per batch: 16 servings @ 8 grams of fiber per serving
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!
- 2 cups raisins
- 1 lb. raw almonds
- 1 lb. raw walnuts or pecans
- 2 cups raisins
- 2 cups dried cranberries
- 2 cups unsweetened coconut flakes
- 1 box Fiber One cereal
- 1 box Fiber One Honey Clusters cereal
- 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.
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.
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."
That's all I ask of you this month: just make a difference to one.
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.