On February 14, 2022, the National Council on Disability (NCD) issued the Health Equity Framework. Within the framework is a call to action involving an “all-of-government approach to comprehensively address the health needs of the over 64 million people with disabilities in this country and in our territories…
Continue readingHealth equity occurs when all people have the opportunity to experience the best possible health, quality of life, lifespan expectations and access to health care and health related social supports. Eliminating barriers to health equity allows people with IDD to participate fully in all aspects of community life…
Continue readingDr. Craig Escudé was recently asked to give three reasons why states and agencies should consider using eLearn training on the Fatal Five to train their support staff.
The first reason is simply because it’s not common knowledge. We aren’t born with the ability to recognize health destabilization, and particularly in people with intellectual and developmental disabilities who communicate differently and not always using words. It can be very challenging to see the early signs of things like an aspiration pneumonia condition developing or constipation that could turn into bowel obstruction that could lead to hospitalization or sepsis or seizures or dehydration, or even gastroesophageal reflux disease. We simply don’t have this knowledge. And the only way we can get it is if we receive training and eLearn training is efficient and a very good way to impart this knowledge to supporters of all levels.
The second reason is because there are fewer eyes. You know, there are just simply less people in the direct support professional world at this time, which means there are fewer eyes, fewer people that are able to provide oversight and supervision and guidance and support to people with intellectual and developmental disabilities. And when there are fewer people, it’s even more important for them to be trained to recognize these conditions, these early signs, so that they know what to do and how to act when they see these things. These small little bits of information that are learned in these eLearn courses can be life-saving to people that they are supporting.
The third reason, high staff turnover. We know that there’s a lot of turnover in the field of providing supports and services for people with intellectual and developmental disabilities, especially in the direct support level positions. And we need to have training that’s readily available.
It’s important that they know what to do, they know what to look for, and they understand them thoroughly.
And we can’t always wait a month for in-service training, but having eLearn courses like this available that someone can start right away can help ensure that staff, as soon as they come into work, can receive the important training that they need.
That can not only save lives but just reduce unnecessary pain and suffering in people with intellectual and developmental disabilities by helping them get diagnosed properly and treated for conditions that are known to be preventable causes of morbidity and mortality.
Contact us today to see a preview of our online health and safety training eLearn, The Fatal Five Fundamentals.
Call us at 727-437-3201 or email us at Inquiries@ReplacingRisk.com.
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 support professionals and discuss ways to prevent dehydration from becoming 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.
Supporters 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 flushed from the esophagus back into the stomach. Encouraging fluids earlier in the day and using a nighttime 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. Prescription medications can also facilitate the problem. 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 people you support who take these medications and their support staff to be aware the side effects of these medications.
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 supporters to monitor for the following:
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:
Effective developmental disability care services require insight into the unique health risks of those with IDD. This comprehensive 7 module, self-paced eLearn course comes complete with videos, interactive exercises, and visual aids.
Support staff who feel empowered to observe, make informed decisions, and take action.
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.
For those who just don’t like to drink fluids, things such as popsicles and gelatin have high water content which can help increase water intake.
In a case where dehydration is severe, symptomatic, or where a person simply won’t consume fluids orally, intravenous fluids may be necessary. If someone consistently refuses fluids, notify your nurse or healthcare provider.
It is important to educate individuals and/or their supporters about the effects of medications that may contribute to dehydration. They should be given information about:
Being aware, knowing the early signs, understanding how to prevent it and acting if you see it goes a long way to reducing the risks associated with dehydration and can help “replace risk with health and wellness” in those you support.
(Clearwater, FL) January 12, 2021—Research shows that people who live with intellectual or developmental disabilities (IDD) are up to three times more likely to die from COVID-19 and its complications when compared to people without IDD.(1) Those living with IDDs are more likely to live in group home settings and are often more reliant on support givers for help with activities of daily living. But these people, and the people who support them, have been subject to the same social distancing and isolation recommendations as the general population. Unfortunately, this disruption to the norm does more than interrupt routines and hinder personal growth and development—it also places individuals with IDD at greater risk of serious issues like abuse or neglect.(2)
Dr. Craig Escudé, President of Health Risk Screening, Inc., says, “The pandemic disproportionately affects people who live with IDD, making them more vulnerable to problems like loneliness and disruptions in services providing educational or therapeutic support. There must be a way to help decide whether it’s appropriate for people with IDD to continue on with certain social activities connecting them with others which helps reduce risks of isolation, depression and anxiety associated with limited social contact.”
Like most Americans, people with IDD are socially distancing, avoiding activities once enjoyed away from their homes. The reasons why are multifactorial:(3)
But this massive disruption in health, home, and community services is already having profound effects on the estimated 7 million people in the United States who live with IDD.(4) Some studies show up to 70% of people living with IDD have lost at least some of their normal health services as a result of COVID-19, and as many as 74% have lost one or more services entirely. (4)
Many of these services, such as special education programs for youths with IDD, rely on interpersonal relationships between the youth support givers, who may help with physical positioning, toileting, feeding, among other needs.(5) Often, these same support givers are essential for helping prevent infection among people with IDD.(6) When these relationships are severed, people living with IDD may fall further behind academically, or they may suffer from regressive behavioral changes related to the loss of a structured daily routine.(5)
According to Dr. Escudé, support givers and family members need a tool to help weigh the benefits and risks of a person living with IDD returning to normal activities. HRS developed such a tool, called the Risk/Benefit Return to Activity Form, to help guide supporters in such decisions.
The Risk/Benefit Return to Activity Form addresses several key areas of risk, such as personal, situational, and health risks, to help determine whether the benefits of attending a certain activity outweigh the potential harm. Each section of the form includes questions such as:
The benefits are also weighed with questions like:
Support personnel who complete this form as part of team meetings can then share it with primary decision-makers to come to a consensus as to whether or not the person with IDD should participate. The form is available to download for anyone who regularly cares for a person with IDD.
Dr. Escudé says, “Just like others, people who live with IDD enjoy social activities which enrich and enhance their lives. Our tool can help those who support people with IDD decide whether the benefits of such activities outweigh the risks of potential exposure to COVID-19.”
Sources
By Dr. Craig Escudé
If someone you know with intellectual disabilities has behaviors, they’re normal. Everyone has behaviors.
When I’m in pain, I might squint my eyes, grimace and curl up in a ball, or I might scream and yell out causing alarm and anxiety to those around me. If my head hurts, I can get grumpy and want to cover my head to block out light and my ears to block out sound, or maybe just move to a quiet room. The list goes on and on…
When we hear the term “behaviors” relating to people with intellectual and development disabilities (IDD), what is usually being referred to are adverse actions that cause some sort of harm to or disrupt the lives of the person with disabilities or others around them. What’s often missed is that these behaviors are rarely “just because someone has a disability and that’s just what they do.” With careful investigation and an understanding of the “language” of behaviors, a cause can often be found. And, even better, many of these causes do not need treatment with antipsychotic medications.
The less able we are to communicate with words, the more likely we are to communicate with gestures and actions. Have you ever found yourself using hand gestures when trying to communicate with someone from another country that doesn’t speak your language? Actions do sometimes speak louder than words. When you walk by someone and they have their head down, they’re holding their right cheek and have a grimace on their face, you may be on the right track assuming that they may be experiencing some sort of dental pain. Learning patterns of particular behaviors can often help pinpoint the cause of them.
Let’s talk about a few categories of fixable causes for adverse behaviors.
What do you do when you are hot, or cold? Do you remove your clothing? Would you “steal” someone’s blanket from them? You might ask first for the blanket, but what if you were not a person who communicates with words? What if you are in a room that’s really noisy and your head hurts? You’d likely want to move to a quieter place. But, how about if you could not move yourself or communicate to someone else what you are feeling? Might you yell and become agitated?
We should think about environmental causes of distress. Many of these can quickly be remedied and can make a difference in a person’s overall state of distress.
Some people have aversions to various sensations. One of mine is something cold touching my skin. When a person with cold hands touches me, it literally feels something like a shock that makes me recoil and even sometimes give an angry look and a gruff vocalization.
Could the feel of a particular clothing item be causing distress? Is there a repetitive sound that is exceedingly irritating to some and not to others? Could certain food textures feel repulsive to someone causing them to spit the food out? The answer to these is “yes.”
Look at what a person is experiencing in sight, sound, taste, touch, and smell when a particular challenging behavior presents itself. It’s possible that you might identify a pattern that points to something that is easily avoidable.
There are people we like being around and people we don’t. There may not be anything particularly “wrong” with that person at all. It’s just a preference. If we have no real choice about who is around us for hours at a time, we may express our preferences through agitation, resistance, self-abusive behavior or aggression toward others.
We should also consider the possibility that a person is doing something adverse because they learned that stopping that behavior will get them something desirable. “If you quiet down, I’ll give you a soda.” What is being taught here? I get noisy, then I quiet down, I get a soda.
As a physician, this is the area that causes me the most concern. To know that there are people who are in pain and are suffering with underlying health conditions that are not being diagnosed, or worse, inaccurately diagnosed as a psychiatric condition, is disturbing. Clinicians simply MUST learn the language of behaviors and to see them as valid presenting symptoms of illness rather than just “something that people with disabilities do.” There are a number of behaviors that can point to specific underlying health conditions that are too numerous to share here, but I want to give you a few examples:
I’ve seen many people in my clinical career on psychotropic medications in an attempt to reduce some of these behaviors only to find later that there was an underlying, treatable cause. Imagine if you were experiencing painful acid reflux that caused agitation, could tell no one, and were then sedated so that you would no longer “act out.” You’d still have the painful reflux, you just might be too sleepy to try to let someone know through your behavior. We can do better than this! Educating families, supporters, and clinicians in the language of behavior of people with IDD can go a long way to relieving unnecessary suffering.
Take time to learn more about behavioral manifestations of underlying medical, environmental, social, and sensory conditions. Then, share what you learn with supporters of people with IDD and clinicians who treat them. It just might make a big difference in the quality of life of someone close to you who can speak for themselves.
By Patrick Lane
One of the best things about being a person is having friends.
Some of us have a lot and others have a few, but we all need friends. Yet so many of the people we support have lives marked with loneliness and isolation. Often anxiety, depression, overreactions, and even health risks are rooted in not having at last one or two good friends.
Along with helping people balance Important To with Important For and using common language instead of “disability-speak”, Person Centeredness is about helping people with disabilities with the essential human need of building friendships. The question that follows seems to be: How do we do that?
There is no textbook answer, but here is a good way to get started: simply list the steps you take in your life to make friends. After all, Person-Centeredness is just “human stuff” broken into smaller pieces so others can know where to help and in a way that is appreciated.
Helping people with disabilities works much the same as how you would like to be helped.
For me, I like to meet people with common interests. Once I’m in a setting with those folks, I may strike up a conversation with someone. If that goes well, I’ll ask for their number. Later I’ll text or call and plan a time to get together with my new friend and possibly others. The friendship may grow or fade, and it’s likely that I’ll connect with others and begin making more friends.
If someone were helping me, they would simply break those steps down and add support where needed. This could be done by arranging transportation, making purchases, helping me understand what is being communicated, or respecting the group’s social norms. That being said, I wouldn’t want the person helping me to take over or make my decisions, and I’d only want help where it’s needed. If we differed on how that someone would help me, we’d keep negotiating until we found a way that worked.
The process of making friends will differ from person to person. Navigating this process will go hand-in-hand with properly gauging where help is needed and how much help to offer. This is worked out with some trial, error, and learning.
You should record what you learn in a Learning Log, so when someone else comes along to help later the same mistakes won’t be repeated. You may find that you don’t know what kind of people they prefer to be friends with. To resolve this, people who support should look at current or past relationships. Refer to their Relationship Map to see what personality traits are shared among those who are close to the person.
If we are willing to try, we can help people with disabilities escape loneliness, and isolation and the negative effects that follow. If we are willing to learn, we really can help make someone’s life better because we helped them make real friends. And after all, one of the best things about being a person is having friends.
As medical professionals begin to study Down Syndrome, more information becomes available regarding similarities within people living with the condition. For example, researchers are learning people with Down Syndrome are predisposed to certain medical conditions, such as congenital heart defects, sleep apnea, and an early onset of Alzheimer’s disease. More research is crucial to understanding the effects an extra 21st chromosome can have on the body.
As you support people with Down Syndrome, here are some helpful tips for providing the best level of care that fosters independence, growth, and positivity.
Plan for transitions. People with Down Syndrome often struggle with everyday transitions and can greatly benefit from warnings and preparation. Prior to starting a new activity, remind those you support what to expect and when to expect it.
Stay positive! Remember people with Down Syndrome can, and do, complete just about any task they set their minds to! Work with those you support on meeting their goals, reminding them you believe in them.
“Nothing about me without me.” Never make a decision for someone you support without being sure to include them in the conversation. People with Down Syndrome want to be, and should be, included in making these decisions for their lives.
Make a donation to the National Down Syndrome Society (NDSS). Your generosity will support this organization as they work to enhance the quality of life for those living with Down Syndrome. Learn more about how donations are used here.
Share information on your social media page. Awareness is crucial for the Down Syndrome community! Share facts, Buddy Walk registration information, and photos with your friends.
Register for a Buddy Walk. The NDSS hosts Buddy Walks across the country with the goal of promoting understanding and acceptance. Many of these walks take place in October and are a great way to raise funds and awareness for a great cause. Click here to see a list of upcoming walks across the country.
Data received from: www.cdc.gov , www.ndss.org , www.kcdsg.org
By Hilary Gaytan – Former DSP, QIDP | Business Development Rep. IntellectAbility
I think you could argue that DSPs are some of the most talented people in the world. (And I say that not just because I used to be one!) What other career requires you to wear as many hats? At any given moment on a shift you may be asked to be a teacher, coach, cook, personal assistant, advocate, stylist, chauffeur, nurse, therapist, tech support specialist, job coach, physical trainer, friend.
As a DSP, you quickly learn that your job is not just to “show up and follow levels of supervision”. Like any job worth its salt, it has its good days, the not-so-good days, the big leaps and the baby steps.
It’s assisting someone to bake their Grandma’s famous chocolate cake or teaching someone how to use Facetime so they can call their Dad. It’s the late nights spent discussing how to overcome a disagreement with their boyfriend, and the early mornings you spend assisting with medications.
Not to mention the hours of thorough training in the classroom, on the job and continuing education training.
Sacrificing time with your own friends and family by staying late or working holidays, to help someone else’s friend/family member achieve their goals is commonplace in the life of a DSP. The job is nothing short of demanding and at times, is out-right difficult.
Yet… it is the most rewarding job you will probably ever have.
Case in point, I recall watching onward as someone paid for their drink at the movies, entirely on their own after weeks of practice. The look of pure satisfaction as she confidently counted back her change to me. As the previews began, I witnessed the silent tears as she whispered, “I’m just so proud of myself”. What I wouldn’t give to bottle that moment up and take a sip from it every day!
It is moments like that, along with the emotions and the achievements that DSPs the world over work diligently to create every single day.
This week is National DSP Recognition Week, and we at IntellectAbility want you all to know that this week, and every week, we are thankful for and admire the dynamic, selfless, passionate DSPs all over the country who have somehow found a way to rock those innumerable hats while creating a quality of life for those you serve!
Sudden Cardiac Arrest is a condition in which the heart unexpectedly stops beating, blocking the blood flow to vital organs of the body. The devastation of sudden cardiac arrest is the fact that the survival rate is only 2%; however, an automated external defibrillator can save lives in this emergent situation. Although sudden cardiac arrest can be an unexpected situation, there are risk factors, signs, symptoms that everyone should be educate about to prevent sudden cardiac arrest. Sudden cardiac arrest is actually the leading cause of death across the world as 17.5 million people across the globe die from sudden cardiac arrest every year. Prevention begins with community education.
Cardiovascular signs and symptoms are often overlooked in the IDD community because of their behavior, but it is it critical for caregivers and healthcare providers to pay close attention to all physical, behavioral, and emotional changes of individuals with intellectual and developmental disabilities. A lack of quality sleep, increase fatigue, and sudden changes in emotions can in fact be symptoms for cardiovascular complications in the IDD community. In order to prevent arrythmias (irregular heart rhythms) that lead to sudden cardiac arrest, individuals with IDD must remain vigilant in living a healthy lifestyle and receiving access to quality care.
S.C.A.R.F. is a non-profit organization dedicated to educating people about the signs and prevention of sudden cardiac death/arrest. Many instances of sudden cardiac arrest occur without immediate warning, with minimal or easily overlooked symptoms. However, most people do not realize that there are plenty of signs for cardiac complications.
In addition to the informational resources and training we provide, we are unique as an organization in that we actually also treat patients ourselves. We are on the front lines with the challenges of heart disease, and we understand the challenges that patients need to overcome on a regular basis. We hope that you join us in our mission to reduce the epidemic of heart disease.
At S.C.A.R.F. we know that the access to an AED is critical for survival during sudden cardiac arrest. The goal of our AED donation program is that all public places have an AED in case of emergency. Each time we donate an AED, we will educate the employees and volunteers at the organization. You can contact us on behalf of your organization or nominate one that you think may benefit from this gift. This AED donation program is limited to non-profit organizations. Please visit https://www.scarfnow.org/aed-donations to apply for an AED donation.
S.C.A.R.F. believes that every individual should have access to quality care; therefore, we are constantly connecting with organizations and patient across the country to provide access to quality care. The S.C.A.R.F. healthcare providers are trained to provide quality care to individuals from various communities, including the IDD community. Please contact S.C.A.R.F. to join us in our mission to spread awareness about sudden cardiac arrest while providing quality care to our community.
Website: https://www.scarfnow.org
Email: info@scarfnow.org
Phone Number: 815-595-3050
Facebook: @scarfnow
Linkedin: @scarfnow
Instagram: @scarfnow
