S.C.A.R.F. Provides Clinical Access to the IDD Community

Arab female doctor working in the clinic

What is Sudden Cardiac Arrest?

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.


Sudden Cardiac Arrest in the IDD Community

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.


What is S.C.A.R.F.

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.

 

 

 

S.C.A.R.F. AED Donation Program

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. Provides Clinical Access to the IDD Community

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.

 

Contact S.C.A.R.F.

Website: https://www.scarfnow.org
Email: info@scarfnow.org
Phone Number: 815-595-3050
Facebook: @scarfnow
Linkedin: @scarfnow
Instagram: @scarfnow

Benefits of ELearning for Healthcare Professionals

The COVID-19 pandemic has changed many things, including how we work and learn, interact as a society, and of course, the importance we place on good old TP. All jokes aside, professionals have begun to take a sudden new approach to industry-related training and learning. The good news? It may be for the best.

Online education has become widely accepted and sought after in recent years because of its convenience, effectiveness, and versatility.

It is projected to grow in popularity exponentially in direct response to the COVID-19 pandemic. Below we’ll examine some of the benefits this exciting education opportunity offers to professionals of all ages, education levels, and positions.

  • Online learning is conducive to everyone’s needs
    eLearning’s customizability makes it practical for every type of learner. Whether you prefer video, audio, webinars, textbooks, or worksheets, you will have the tools needed to learn long-lasting skills for supporting individuals with disabilities. According to the WHO, professionals “acquire knowledge and skills through online and offline eLearning as well as or better than they do through traditional teaching.”[1] Learning online is much more convenient for professionals seeking CEs and professional growth, making it easier to grasp and digest content. What’s not to love?!

  • Content can be reviewed any number of times
    Unlike traditional classroom teaching, online learning provides professionals the chance to access content an unlimited number of times. Healthcare professionals can turn to this wealth of knowledge when they have questions. Many professionals remember reading something about the topic but do not remember the details of it. Thanks to eLearning, they can find the answers they need within minutes.

  • eLearning is convenient
    We know you are busier than ever, juggling new regulations, best practices, and the needs of those you serve. The last thing we want to do is add more unmanageable tasks to your schedule. eLearning allows you to take courses whenever you have time (and energy!). Professionals who take courses on their own time gain valuable information that is better understood and retained.

  • eLearning allows you to invest in yourself
    By taking the initiative to gain new skills, certificates, and knowledge, you set yourself up for success in your current and future positions. eLearning allows you to stay up to date with healthcare’s latest developments, ensuring you remain competent in your field. Staying current is essential to protecting the people you serve, and it makes your job much more fulfilling and rewarding.

  • eLearning improves quality of living for those we serve
    Working in this industry has its challenges, but above all, we know you are committed to helping those you serve live their best lives. By staying educated and working to grow your skills, you will directly improve the quality of their life. eLearning courses focused on Person-Centered Practices (PCP) teach staff to prioritize the wants and needs of those we serve, not just what they believe is best for an individual. This helps individuals in retaining their autonomy while still receiving necessary supports. Staff who use PCP report feeling more accomplished with their work and closer to those they serve.

COVID-19 has caused professionals to shift their continuing education online rather than halt it altogether, and the benefits are evident. eLearning directly contributes to more successes for individual employees, the company, and above all, the people we serve. Individuals can grow their knowledge and skills at higher rates than ever because of eLearning with added convenience and versatility not available in a traditional classroom setting. eLearning is undoubtedly here to stay, and for a good reason.

[1]   E-Learning as good as traditional training for health professionals: Where is the evidence? (2015, January 15). Retrieved June 17, 2020, from https://www.who.int/

Protective Equipment and Persons with IDD

Although people might be getting a little weary of hearing about the COVID-19 pandemic, it is still a very real issue and we need to remain highly vigilant. That includes wearing protective equipment when appropriate. When should masks be worn and how do you safely put them on and off? The World Health Organization (WHO) offers simplistic and helpful demonstrations and explanations regarding masks.

It is difficult for many people to wear these articles. If a person wears glasses and the mask is not put on appropriately, it steams them up. Or, the mask slips down on the face and it must be retied or adjusted. It could just feel very odd so that people are constantly trying to adjust it for comfort. Maybe the person is claustrophobic and has a feeling of suffocation if they can’t breathe in fresh air. What if the person with I/DD is fabric-sensitive, smell or touch sensitive? What if they are simply noncompliant? These are challenges that support persons are dealing with every day.

Here are a few things you can try:

1) Try putting masks on stuffed animals. Let the person put the mask on the toy and then apply their own mask or allow staff to apply it. The support person may have to put it on the stuffed animal. Leave it on the animal for a while so that they can see it isn’t bothered by wearing a mask. It may take several times of putting the mask on the stuffed animal before the person will allow a support person to put a mask on their face or put the mask on their own face.

2) If fabric masks are being used, have several pieces of fabric options and allow the person to choose what they want. Try to have different textures, colors and prints available. Select elastic that is not too tight so that it won’t hurt their ears. If elastic is not available, use large hair ties. The fluffy hair ties that are elastic may be used, too. Try masks with no elastic but instead have simple ties that go around the head. Again, allow them to select the elastic or ties.

3) Let them have a mask to carry around and hold and feel. Let the person try it on and take it off. It doesn’t matter if they destroy it, give them another type to play with and see if there is more success with it. Slowly try to desensitize. Let them wear a mask for ten seconds, then take it off. You may even have to start with a shorter time and add a second or two each time you put the mask on them. You can even make an activity out of it. “Mask time” is when everyone can demonstrate putting on and taking off a mask appropriately. You may try a reward system after they wear the mask for a while such as picking a special treat, a trip to the park, FaceTiming with family (make sure they have the mask on and give the person a lot of praise) or simply spending 1:1 time with their favorite staff.

4) Let them personalize their mask. Again, allow them to select the fabric. If using disposable masks give them a Sharpie® and let them draw on the mask and make it theirs. Provide different stencils that the support persons can help them with, such as cars, butterflies or action figures. Find pictures in magazines and hot glue to the mask. (Be very careful if you are using a hot glue gun near the person! Not only the glue gun, but the hot glue itself can burn the person.) Allow them to make two masks so they can choose which one to wear. This can also be done on a fabric mask, but if drawing, they are stuck with only one or two drawings.

5) The support person can also go to a party supply store, or again use a stencil, and get some crazy big glasses. Hot glue the mask to the glasses making sure the glasses won’t interfere with the fit. This can be done with cloth or disposable masks. If the glasses interfere too much with the fit, make some using a stencil and heavy construction paper. The person can select how they want their glasses to look and again they personalize with drawings or pictures. Be mindful the the glasses do not obscure the person’s vision.

6) The staff can have a “Western” time. Everyone puts on a cowboy hat and has a bandana. Watch old Westerns where many of the characters wear a bandana mask. Allow the person to try a simple bandana mask. This is much better than wearing nothing. (I would suggest you avoid The Lone Ranger TV series, because the main character only wears a mask that covers the eyes and obviously that would not be effective against COVID-19.)

Suggested Old Western Series:
a. Bonanza
b. Roy Rogers
c. Gunsmoke
d. Hop Along Cassidy
e. The Rifleman
f. Wagon Train
g. Maverick

The shows can often be found on ME TV or H and I TV channels. If you find some that are appropriate, DVR them and you will always have something to watch.

I hope this gives you some suggestions that might not have been tried. Even if all the people in support have no problem with masks, most of these suggestions can still be used to personalize their masks. All any of us can do is hope this nasty virus leaves us soon!

By Sherry Neal, RN-BC, CDDN

Person-Centered Thinking

CMS’ final rule on Person-Centeredness has created many conversations among those who support people with Intellectual Disabilities (ID). Some center on compliance, paperwork, and measurable outcomes. These, while relevant, miss the spirit.

So, what does it mean to be Person-Centered? Is it about language, or community integration or choice and responsibility? The answer to all, is yes. While Person-Centeredness is a significant shift in how we approach supports, it’s really pretty easy to understand.

The spirit is really about treating people with ID like, well, people.

When we talk about people with disabilities, we still use clinical language even when they aren’t in clinical settings. We say things like, “Stacey has verbally aggressive behaviors, but she is high-functioning. She toilets independently, enjoys outings, needs partial physical support to do math, and requires verbal prompts for personal interaction.” What if we talked about Stacey like we talk about a friend? “Stacy speaks for herself. She is a lot of fun when going out but appreciates a kind reminder to respect others’ space. When making purchases, her friends help her make sure everything’s correct.”

See the difference?

When we think about community integration for people with ID, we often approach it like students on a field trip. While group trips can be fun, what if we also helped a person with ID get and stay connected with a local artist, musician, or baseball coach?

When we think about balancing choice and risks for people with disabilities, we may lose the balance we would ordinarily pursue such as when helping a friend. We may protect people from any risks leading to lives that are safe but are miserable and limit their growth. Or, we may not offer direction, thus putting people at significant risk and sanctioning reckless choices. What if instead we provided direction but not control, to help people make informed decisions, even if those decisions led to mistakes from which they could recover and grow, just like we do for our friends?

No doubt: paperwork will follow, compliance will be required and outcomes will be measured but let’s not forget that Person-Centeredness is about treating people like people, and that is the right thing to do.
And remember, person-centeredness is not just for those with IDD.  It is applicable to anyone who for any reason has lost ownership or positive control over their lives.  This could be because of an acquired disability, accident, the aging process, and so on. When supports are needed from others, person-centered approaches help ensure the person stays in control of their life as much as possible.

Physical & Nutritional Supports (Part 2)

Last month, we talked about Physical Supports and the concept of supporting a person 24/7 to achieve better health. In this month’s article, we’ll touch on Nutritional Supports. I credit HRS founder, Karen Green McGowan, RN, with enhancing my knowledge about this important way of support.

Few people with intellectual and developmental disabilities (IDD) are born with bony deformities. This is more often a function of failing to initiate the battle with gravity that begins with spinal shaping from a belly-down position. If, instead of moving the head and spine against the opposing force of gravity that normally changes the spine from a big C into an S curve, the person remains on their backside with little active movement, the body will take a new shape that reflects the primary pattern of movement. The head and spine will often flatten and reshape into scoliosis, kyphosis and a flattened chest. These deformities can interfere with normal bodily functioning including the ability to safely swallow.

Nutritional Supports are basically supporting a person in safely achieving good nutrition.

Consider someone that eats with her head rolled back and to the left. This position prevents an adequate closure of the flap that protects the windpipe. Bits of food can just fall right on into the airway. She develops aspiration pneumonia which leads to fibrosis in her lungs. Even if the poor eating posture is thereafter corrected, the fibrosis will predispose her to further pneumonias.

The key lesson here is prevention. Nutritional Supports are basically supporting a person in safely achieving good nutrition. Below are a few general tenants of good nutritional support.

Basics of proper alignment for eating:

  • Align the person starting with the proximal joints and work your way out to the arms and legs.
  • The trunk should between 45 and 105 degrees with 90 degrees the theoretical optimum.
  • We can eat in other positions besides sitting, such as prone on forearms or side lying. These positions are usually reserved for people who have deformities such that sitting is not a good position for them.
  • Keep the trunk as straight as possible with the nose, navel and knees pointing in the same direction.
  • The head should be pointing forward with the nose in midline. The head should not be tilted forward or back as that interferes with the function of the epiglottis in covering the airway. The most dangerous of these is tilted back as it opens the airway right up. It is very dangerous to eat this way.
  • The person may need to have their head supported in neutral and a little help to pull the jaw forward.

The above is general information and should not be implemented for any particular person without consulting with their healthcare professional. Always refer to a person’s Physical and Nutritional Support Plan for individual guidance of positioning and proper techniques for safe eating.

Physical & Nutritional Supports (Part 1)

I’ve practiced medicine in the field of healthcare for people with intellectual and developmental disabilities for many years, and sadly, I had never heard of the term “Physical and Nutritional Supports.” Sure, we did some of these things in our clinical support of people with IDD, but we never had fully understood what I consider this “lost art.” It’s time to put an end to that way of thinking. In this newsletter, we’ll talk about Physical Supports, and in a later newsletter, we’ll delve into Nutritional Supports. Much of what you read in these articles was adapted from the writings of HRS founder Karen Green-McGowan, RN. I’m thankful for the opportunity to have learned this and so much more from her.

The Concept of Physical & Nutritional Supports

People with physical disabilities often have conditions like cerebral palsy, spasticity and contractures of their extremities. Often, they are prescribed physical therapy for range of motion. There’s nothing wrong with that, but let’s look at it this way. We’ll compare weight loss to physical therapy to illustrate the concept.

Physical therapy is often delivered in doses to a person who needs modification of life-style 24 hours a day.

Consider a person who is morbidly obese. Doses of therapy, such as a 300-calorie meal three times a week, will seldom impact the problem unless movement and intake are modified 24 hours a day. Many clinical services are delivered in doses, but most major issues, such as obesity or recovery from a stroke, require a major alteration in lifestyle

With that in mind, consider a person who has a physical disability. They go to see a physical therapist for three doses of physical therapy per week. They then return home and are placed in a chair for the rest of the day before being placed in bed. That physical therapy is wasted and will have little, if any, impact on the health of the person. Ninety minutes of stretching a week compared to the remaining 9,990 minutes in the week spent sitting or lying down with little active movement just won’t do it.

Physical therapy is often delivered in doses to a person who needs modification of life-style 24 hours a day. Babies born with hemiplegia, the most common form of cerebral palsy, want to use only their good side and leave the involved side dragging behind. When they are forced to use the involved side from the get-go, within a year or so, one can often not tell that the toddler had a disability at all.

This makes the case for 24-hour planning that utilizes many forms of supports to get the function of a healthy body. It is not only up to the therapist or clinician to manage the person’s health. It is up to each person who supports them to understand the forms of support this person requires and how they fit in. Techniques to support people 24/7 are relatively easy to learn and to implement by all staff including direct support professionals when guided properly by a physical and nutritional supports plan. Rather than focusing on doses of therapy, we should develop a therapeutic lifestyle. It just makes sense.

Sexuality in People with IDD

February is American Heart Month. It’s the month where red attire is worn on the first Friday to bring awareness to heart disease in women. It’s also the month that includes Valentine’s Day, roses and romance. It’s the Valentine’s Day heart experience that we will talk about in this article.

Many people who have never supported persons with IDD think they are either asexual beings or it is simply wrong for them to have a sexual or romantic relationship. Even some people who support them think that is the way it should be too. After practicing in this field for almost 25 years, I can speak with authority that close friendships, love, romance, sex, marriage and having children do occur.

If a couple can both consent to a sexual relationship, there is nothing that should prohibit them from having a sexual relationship.

People with IDD have the same hormones that their typical peers have. Most generally have the same genitalia. Sexual desire is a natural occurrence related to hormonal stimulation and more than likely they are going to act on those desires and impulses. If a couple can both consent to a sexual relationship, there is nothing that should prohibit them from having a sexual relationship. This relationship can fall under the LGBTQ acronym as well as a heterosexual one. There are a couple of caveats–they both need the capacity to consent, verbally or through other means to show understanding and the couple must be educated on safe sexual practices and freedom from abuse and exploitation.

Sometimes, sexual release is found through masturbation for both males and females. This is OK too if it occurs in an appropriate private area. Knocking on a closed door AND waiting for a response that it is OK to enter, should be the standard for allowing privacy. If masturbation becomes obsessive, this can cause skin damage and a plan needs to be put in place not to stop the masturbation but reduce the incidences.

Relationships are not all sexual, but the couple may engage in hand holding, kissing, hugging or just sitting next to each other on the couch. This type of relationship is just as important as a sexual one. It may be impossible to tell if they love each other or are just happy being together. But, does it really matter? Both people receive caring gestures from someone else and it fulfills the desire to have a close connection with someone other than family.

Marriage and children are in the cards for some people. Counseling is suggested prior to marriage, so both go in with their eyes open and knowing what to expect. What if the marriage is not successful? Well, doesn’t that happen in many of their neurotypical peers as well? If having children is being considered, genetic testing is recommended in order to determine the types of genetic syndromes that may be passed on to the child.

Relationships are important in everyone’s life. Relationships can come in many shapes and sizes and one size does not fit all. It’s not “cute” or “precious” or “adorable,” it is two people finding someone that they can connect with in the way that fits them. It doesn’t matter if you are listening to your heart thump for health or thump for someone important, remember during American Heart Month that both are important.

Training for Real 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.

Eating Disorders

Eating disorders are generally considered and diagnosed in neurotypical people, but did you know they can affect persons with IDD as well? Although serious and sometimes fatal, they are treatable.

The person typically has an uncommon relationship with food. It can be portrayed in their actions, their justification for it or it can be their lover, comforter and friend. Eating disorders can also stem from distorted perceptions of weight and body image. Females are more often affected than males.

Many people do recover from eating disorders but may relapse during stressful periods in their life.

Anxiety, depression, substance abuse and obsessive-compulsive tendencies often occur in combination with eating disorders. Anxiety is the most frequently seen in connection with an eating disorder.

Here are some eating disorders that you may see:

  • Anorexia NervosaThis is identified by a significant weight loss and a skewed view of body image. There is often denial that there is a problem and the person doesn’t recognize the seriousness of the disease.
  • Avoidant Restrictive Food Intake DisorderThis describes a very, very “picky” eater which often results in a significant lack of nutrients and calories for cellular health and overall body health.
  • Binge EatingBinging is eating a large amount of food within 2 hours or less, significantly more than others would eat. The person has the feeling of loss of control during a binge and strong feelings of guilt and shame after the binge. Binge Eating is the most common eating disorder in the U.S.
  • Body Dysmorphic DisorderThe person focuses on one area on, or part of, the body and sees a serious “flaw(s). The area or “flaw” is generally not noticed by others. They feel ugly and deformed and “fat” when they are within their normal weight. They are constantly comparing their body to others and are obsessed with checking mirrors, excessive clothing changes and application of makeup.
  • Bulimia NervosaBulimia is binge eating with compensatory behaviors to eliminate the calories they consumed. These compensatory measures may be vomiting immediately after binging or taking excessive diuretics and laxatives. Bulimia is not necessarily about the food or its comfort, but more about body image.
  • NeophobiaNeophobia is the fear of trying any new foods and rejecting food when it is served before it is even tasted. This can sometimes be related to the presentation, form and smell of foods.
  • PicaA person eats nonnutritive substances for at least 1 month. The more severe the disability, the more likely it is for the person to have pica. Some pica can be related to nutrient and mineral deprivation, especially iron and zinc. Pica is strongly associated with disorders of the GI tract.
  • Purging DisordersPurging disorders occur in the absence of binging. Purging can take the form of self-induced vomiting, over-use of laxatives, diuretics or enemas.
  • RuminationIt is generally defined as chewing and re-swallowing prior ingested food. It can also be the voluntary and repetitive expulsion of regurgitated stomach contents. It can occur across the lifespan and is more common in persons with IDD. It is often misdiagnosed, in some cases 2 years. Generalized anxiety disorder often accompanies rumination.
  • Super TasterThis person has a sense of taste that is a higher intensity than others. A super taster typically has a more intense taste to bitter, fatty or very sweet items. They may eat more salt to counteract the bitterness. The person also may be very sensitive to hot, spicy food because pain receptors surround the taste buds.

The primary goal when treating a person with an eating disorder is to first treat the malnutrition and the underlying damage caused to organs when possible. Many people do recover from eating disorders but may relapse during stressful periods in their life. 

The Fatal Five Plus

Fatal five elearn training IDD

IT’S HELPFUL TO KNOW WHAT SOME OF THE MORE COMMON CAUSES OF A CHANGE IN THE LEVEL OF ALERTNESS OR ACTIVITY (“NOT ACTING RIGHT”) CAN BE. AND FOR PEOPLE WITH IDD, ONE OF THE MOST COMMONLY SEEN CAUSES IS CONSTIPATION.  I  8 MIN  

Co-written by Risley “Ley” Linder, MA, MED, BCBA & Craig Escudé, MD, FAAFP, FAADM
Published by Helen Journal

This article is part of a co-authored series on behavioral presentations in which a physician and a behavior analyst provide insight into real-life case studies to share their expertise on how behavioral issues can be addressed in an interdisciplinary fashion.

By Karen Green McGowan, RN-BC and Craig Escude, MD, FAAFP, FAADM

The term “Fatal Five” refers to the top conditions linked to preventable deaths of people with intellectual and developmental disabilities (IDD) 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 conditions most likely to result in death or health deterioration for people with IDD are:

  • Aspiration
  • Constipation/Bowel Obstruction
  • Seizures
  • Dehydration
  • Sepsis

Another condition which is exceedingly common, frequently overlooked, and leads to significant health troubles in people with IDD is Gastroesophageal Reflux Disease, also known simply as GERD.

Let’s talk about each one of these in a little more detail:

Aspiration is usually listed as the most common cause of death in institutional settings, including nursing homes and large group care settings for people with IDD. Aspiration pneumonia is a common discharge diagnosis following hospitalization. It occurs when bits of food or liquids make their way into the windpipe instead of into the esophagus where it should be. Aspiration can occur during the swallowing process, but also occurs when stomach contents come back up the esophagus as a result of vomiting or gastroesophageal reflux.  It often begins subtly and damages increasing portions of the lungs. Feeding tubes, which carry their own increased risks, are often utilized in an attempt to bypass the swallowing process and reduce aspiration episodes, but are not always entirely effective. 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. One of the most common signs of aspiration is a cough noted during eating or drinking or shortly thereafter. When a cough is noted under these conditions an evaluation should be  initiated to look for possible aspiration.

One of the most common signs of aspiration is a cough noted during eating or drinking or shortly thereafter.

Constipation and Bowel Obstruction are almost always at the top of the list of causes of illness and preventable death in people with IDD. One of the most important root causes 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. Lack of mobility is a contributing factor to constipation, as well. We often see people on one or more medications to help improve elimination, but ironically, drugs intended to improve constipation often place the person at higher risk for impaired bowel function. Adequate active movement or exercise is also important to bowel function. 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  illness or death from bowel obstruction.

 

Seizure deaths can occur from episodes of prolonged, uncontrolled seizures as well as something called SUDEP or sudden unexplained death in epilepsy. For reasons that medical science has yet to explain, people who have epilepsy have a higher chance of dying suddenly unrelated to actual seizure activity. Drug toxicity and medication side effects can further impact the health and well-being of people who takethese medications, and the balance between adequately controlling someone’s seizures and the risk of adverse drug reactions must always be at the forefront of the treatment plan.  Life expectancy for people with active seizure disorders has been shown to be up to 10 years less than those without epilepsy.

 

Dehydration is all too common and easily preventable in most cases. People 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 fluids are restricted in an attempt 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. Awareness of fluid loss through sweating in warm and humid conditions or from loss due to vomiting or persistently elevated blood glucose levels in people with diabetes is important, as well. The presence of fever also increases a person’s fluid needs. Anyone supporting people with IDD should be aware of a person’s fluid requirements and work to ensure that they receive the necessary fluids to prevent dehydration.

 

Sepsis, sometimes called “the silent killer” is an ever-present threat to all. Sepsis is a condition which results from a significant infection in the bloodstream and the body’s response to that infection. Early signs of sepsis include fever, chills, rapid heart rate, low blood pressure and mental status changes.  Some of these symptoms are common with may illnesses, but one’s index of suspicion should remain high for worsening signs of a serious infection and referral for a medical evaluation should be considered earlier rather than later. The risk of death increases significantly for each hour that passes when sepsis is left untreated. Remember, “When  in doubt, send them out!”

Early detection and treatment of these conditions can lead to better health, lower risk of death, and improved quality of life for people with IDD.

 

Gastroesophageal reflux disease (GERD) is the backing up of stomach contents, including acid, into the esophagus. GERD is frequently undiagnosed in many people, 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 gastrointestinal bleeding and esophageal cancer become increasingly common. Recognizing signs of GERD, especially in people who do not communicate with words, is important to reduce the risks associated with this condition. People who exhibit food refusal, coughing when lying down, physical or verbal aggression particularly around meal times, or distress in the middle of the night may be telling you that they are experiencing GERD. Pica, a behavior where people eat things of non-nutritional value, may also be a sign of GERD and should prompt an evaluation.

Early detection and treatment of these conditions can lead to better health, lower risk of death and improved quality of life for people with IDD. Make it a priority to educate yourself, support staff, families, and those with IDD to recognize signs of these conditions and to seek medical consultation at the earliest signs of illness.