New Tool Determines Health Risks of Social Interactions for People with IDD

New Tool Determines Health Risks of Social Interactions for People with IDD

 

As social isolation measures continue, people who live with IDD are more likely to experience serious problems like loneliness or even abuse or neglect. A new tool from Health Risk Screening, Inc. helps weigh the benefits of social interaction vs. the risks of COVID-19 exposure for these individuals.

 

 

(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)

  • People living with IDD are more likely to have underlying medical conditions, such as chronic lung disease,
  • They often rely on various support givers for help with activities of daily living,
  • Standard safety precautions and preventative measures may not be understood, and
  • They may not be able to verbally communicate to others symptoms of illness.

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:

  • Can the person follow the social distancing protocol of remaining 6 feet away from others independently?
  • Is the level of community spread in the location of the activity considered reasonable by health authorities?
  • Does the person have any immunocompromising conditions?

The benefits are also weighed with questions like:

  • Is socialization important to help manage or improve the person’s anxiety, mood, mental status, behavior, or mental health disorder?
  • Does the person earn a wage when participating in this activity?

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

  1. Rabin, Roni Caryn. “Developmental Disabilities Heighten Risk of Covid Death.” The New York Times, The New York Times, 10 Nov. 2020, nytimes.com/2020/11/10/health/covid-developmental-disabilities.html.
  2. King, Dianne. “Risks for Harm Skyrocket for People with Disabilities during Pandemic.” The SAFE Alliance, 28 May 2020, safeaustin.org/risks-for-harm-skyrocket-for-people-with-disabilities-during-pandemic/.
  3. “People with Disabilities.” Centers for Disease Control and Prevention, Centers for Disease Control and Prevention, Sept. 2020, cdc.gov/coronavirus/2019-ncov/need-extra-precautions/people-with-disabilities.html.
  4. State of the Science on COVID-19 and People with IDD. 2020, aaidd.org/docs/default-source/publication/state-of-the-science-on-covid-19-and-people-with-idd—dec-2020.pdf?sfvrsn=25893421_0.
  5. Constantino, John N., et al. “The Impact of COVID-19 on Individuals With Intellectual and Developmental Disabilities: Clinical and Scientific Priorities.” American Journal of Psychiatry, 28 Aug. 2020, ajp.psychiatryonline.org/doi/10.1176/appi.ajp.2020.20060780.
  6. “People with Intellectual and Developmental Disabilities Disproportionately Affected by COVID-19.” National Institutes of Health, U.S. Department of Health and Human Services, 28 Aug. 2020, nih.gov/news-events/news-releases/people-intellectual-developmental-disabilities-disproportionately-affected-covid-19.

How to Help Loved Ones with Intellectual Disabilities with “Behaviors”

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…

Behaviors as a Language

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.

Environment

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.

Sensory Issues

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.

Social

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.

Learned Behavior

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.

Medical

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:

  • Spitting out food may be caused by pain when someone chews due to a dental abscess
  • Becoming agitated and aggressive when heading towards the dining table may be a sign that a person experiences something painful before, during, or after eating such as reflux or aspiration
  • Constantly putting their hands in their pants could be a sign of a genitourinary issue like a urinary tract infection or a yeast infection
  • Screaming or resisting taking a bath could be a sign that something ‘bad” happens when their clothes come off such as abuse
  • Waking up in the middle of the night screaming could be a sign of gastroesophageal reflux
  • Becoming withdrawn, less alert, and less interactive could be a sign of constipation
  • Being “hard to reach” could be associated with seizures
  • Scratching and hitting one’s chest along with anxiousness could be a sign of chest pain

Learn More About Easily Treatable Behaviors

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.

Making Friends Using Person-Centered Practices

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.

Down Syndrome and How You Can Help

 

About Down Syndrome

Down Syndrome, also known as Trisomy 21 or Down’s, is a condition in which a person has an extra copy of chromosome 21. This extra chromosome causes a wide range of different abilities, including both mental and physical challenges. According to the CDC, some common physical features of Down Syndrome include a flattened face, a short neck, poor muscle tone, small hands and feet, and shorter height in both adults and children. Down Syndrome is the most common chromosomal abnormality in the United States, occurring in around 1 out of every 700 babies. 

History of Down Syndrome

Down Syndrome was first discovered in 1866, when physician Dr. John Langdon Down identified a group of patients who shared similar characteristics. More research was needed, and in 1959, scientists finally traced the condition back to a chromosomal abnormality. In 1965, the WHO officially recognized this condition as Down Syndrome. 

 

Recent Advancements

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.

How You Can Help

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.

Always use people-first language. People-first language, also known as people-centered language, refers to a style of speaking and writing that places a person first in a sentence, before their diagnosis. For example, one should say, “a person I support with Down Syndrome” rather than “a Down Syndrome person I support”. Check out the National Down Syndrome Society’s Preferred Language guide here.

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.

 

Some suggested ways of celebrating National Down Syndrome Awareness Month:

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 

Direct Support Professionals | Dynamic, Selfless, & Passionate

dsp yoga photo

 

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!

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.