Matthew’s Memo: An Advocacy Success Story

READ HOW HIS MOTHER AND FORMER TEACHER TURNED MATTHEW’S INITIAL REJECTION INTO AN
ENCOURAGING ADVOCACY SUCCESS STORY.  |  5 MIN READ

By Lorene Reagan, MS, RN, Director of Public Relations, IntellectAbility

Matthew turned 16 on February 6, 2023. He was excited about this landmark birthday and had made big plans to celebrate by giving blood for the first time. Having accompanied his father, a retired county sheriff, and regular blood donor, many times over the years, he was finally old enough to give blood himself. Plans were made for a celebration at the donor site to commemorate the occasion. As a lifelong Tampa Bay Lightning fan and big-time Victor Hedman fan, Matthew hoped to encourage 77 others to give blood to honor his hockey hero, who wears the #77 jersey.

He arrived at the blood collection center in his community with 20-25 of his supporters and prospective donors on his birthday amid great fanfare and proceeded to the donation room. Shortly after that, he emerged from the room, greatly disappointed because he had been rejected as a blood donor. According to the center, people who can’t independently get up on the donor bed can’t donate. Matthew, who has cerebral palsy, uses a wheelchair and can assist in transfers from the wheelchair to other surfaces but needs a little help to get there. His supporters offered to assist him but were told that the FDA (Food and Drug Administration) requires all donors to be able to get up on the table independently.

Matthew, his mother, and his former teacher and IntellectAbility Inside Sales Representative, Grace Gould, knew this couldn’t be right and asked the staff at the donor site to escalate the situation to leadership within the organization. While others donated, Matthew waited to hear back from the higher-ups. Unfortunately, Matthew was ultimately told he could not donate blood on his birthday because of his inability to access the donor table independently. Matthew, his family, and his supporters decided to make the best of the situation that day and celebrated with cake and balloons.

Matthew’s mother and Grace researched blood donation regulations and requested clarification from the FDA. The Office of Blood Research and Review (OBRR) in the Center for Biologics Evaluation and Research (CBER) provided a prompt response, indicating “there are no specific regulations preventing a person from donating blood due to required assistance in getting on and off a blood donation bed.” Rather, the donor must “be in good health and free from factors that would adversely affect the health of the donor.” The response went on to say, “the collection center is ultimately responsible for determining the eligibility of the donor” and suggested they address their concerns with the center’s medical director.

 “I was shocked that in the year 2023, an otherwise healthy individual was denied donating much-needed blood simply because he needed minimal assistance to get up on the donation bed,” said Grace. “What about the organization’s responsibility for complying with the ADA (Americans with Disabilities Act)?”

Armed with the FDA’s response, Matthew’s supporters returned to his community collection center, asking for reconsideration. To their credit, the medical directors at the center met to discuss Matthew’s request. They issued a policy memo indicating that people with disabilities can be assisted to get on the donation bed if they bring their own supporters to help them. This communication is referred to as the “Matthew Memo.” And as soon as the mandatory waiting period after being rejected as a donor is up, Matthew plans to be there, front and center, to donate.

We applaud Matthew, his parents, and his supporters for their perseverance. And we encourage you to advocate for health equity for people with disabilities. As we celebrate National Cerebral Palsy and Developmental Disabilities Awareness Month, we recognize and salute the countless direct supporters who work to advocate for and enhance the lives of people with disabilities every day

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Unlocking Behaviors: Head-Banging

Unlocking Behaviors: Head-Banging

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. 

Sarah is a 45-year-old woman with a severe intellectual disability. She has lived in the same group home for 12 years, longer than any of her current support staff has worked there.

She is described as mostly cooperative but not very interactive with others. She does not use words to communicate but can usually indicate her preferences and needs with gestures. She is a picky eater, and her support staff has reported that occasionally, Sarah will hit herself in the head or hit her head on a nearby firm surface, such as a wall or table. She has exhibited this behavior intermittently for as long as they have known her. It appears to be “just want Sarah does, sometimes,” and hasn’t been looked into much further.

A couple of times a year, Sarah has been noted to have an upper respiratory tract infection, but overall is healthy. She sees her doctor annually for a physical exam, which is often limited because she will become agitated and hit her head. She sees the dentist twice a year, but, again, she receives minimal intervention because of her agitation.

Medical Discussion

Head-banging behavior can have several etiologies but should never be seen as “just something that people with IDD do.” Even when someone has done this for many years, there still may be a treatable underlying cause.

Some people have what I call a “limited repertoire” of actions or responses to distress or pain. Just because someone is banging her head in response to pain does not always mean that the pain is in a part of their head. For instance, a person may exhibit head-banging behavior as their primary means of expressing discomfort in any part of their body, including if they have an ingrown toenail. They may also exhibit that same behavior in response to social or environmental distress as well. That said, let’s talk about common medical causes of head pain that might trigger agitation or self-injurious behavior.

When looking for a cephalic cause of discomfort, I try to think of the possibility of it coming from “any hole in a person’s head.” Let’s look at them. 

  1. Eyes—glaucoma, a foreign body, conjunctivitis. 
  2. Ears— foreign body, cerumen impaction, otitis externa, otitis media, middle ear effusion.
  3. Nose—foreign body, sinusitis, allergic rhinitis.
  4. Mouth—dental abscess, dental caries, pharyngitis, ulcers, tongue or lip trauma from an accidental, self-inflicted bite.
  5. Other types of head-related discomfort include various types of headaches, scalp lesions, vision disturbances, or hearing disturbances.

I’m probably leaving out a few, but the idea is to think about all possible causes of pain or discomfort that could be causing a behavior change. Once all medical causes have been ruled out, it’s time to look for other potential reasons, including those from social, environmental, and behavioral perspectives.

Behavioral Discussion

Behaviorally, the presentation of head-banging and other forms of self-abuse can be confounding for caregivers and practitioners alike. Sarah’s head-banging presentation brings to light three primary areas of focus:

  • The function(s) of the behavior
  • Temporal dimensions
  • Potential medical concerns, as already noted.

In behavior analysis, we work to identify the function of (or reason for) behavior, which we categorize into four primary areas:

  1. Access to attention
  2. Access to items/activities
  3. Escape/avoidance
  4. Sensory (e.g., pain attenuation).

In the context of potential medical concerns, Sarah’s periodic head-banging could be related to pain attenuation/discomfort for recurrent respiratory infections. Further expounded, head-banging behaviors could also be impacted by the inability to have more comprehensive medical exams and preventative care, such as going to the dentist, which can lead to poor oral health and painful dental issues.


Sarah has been noted to engage in head-banging behaviors in two scenarios: intermittently at home and at medical appointments. As with most behaviors, they do not have a singular function, and although the behavior may look the same across time, settings, and people, the behavior can serve different functions. In Sarah’s case, we need to rule out possible medical causes (sensory function) but also address head-banging behavior when attending medical appointments (escape/avoidance function). In other words, we have identified one behavior but two functions, which means we will need multiple (at least two!) strategies/interventions to address Sarah’s head-banging behavior.

Of note when reviewing Sarah’s head-banging behaviors is the mention that the behavior is intermittent and she is a picky eater. Intermittent self-abusive behavior, only occurring two to three times a year, supports the notion of an acute medical condition, as opposed to self-abusive behavior that occurs at high rates or frequencies, which could lean towards a possible self-stimulatory function. Of particular interest, behaviorally, the staff mentioned she is a picky eater. Colloquially, being a picky eater is based on likes and dislikes. However, what if being a picky eater is rooted in aversion (because of pain)? For example, “Sarah always eats pudding at snack time, but sometimes she refuses to eat cookies, which we know she likes.” Is Sarah periodically refusing cookies because they are crunchy and avoiding them due to pain and discomfort while eating? These temporal dynamics of when the behavior is occurring over time, the time of day (e.g., “Is head-banging more likely to occur at mealtime?”), and other changes in behavior (e.g., food preferences) are all components a behavior analyst would examine.

From a future programming perspective, addressing the barriers impeding successful routine medical appointments (e.g., physician and dentist) would be beneficial. Sarah was noted to not be interactive with others, and communication deficits may be impacting her globally in that she is unable to effectively communicate pain and discomfort, but also stress and anxiety related to medical appointments. Increasing her ability to communicate effectively, instead of head-banging behaviors, and eliminating barriers to preventative medical care, are fundamental for Sarah’s long-term health and quality of life.

Outcome
As it turns out, Sarah was seen by the dentist and was noted to have yet another dental abscess. Her teeth were in exceedingly poor overall condition. After careful consideration and discussion with her support team and family, the decision was made for her to undergo a full mouth extraction. Indeed, the better option would have been for her to have been able to receive proper preventive and restorative care throughout her life, and I’ll leave that to my dental colleagues to discuss in more detail. However, for Sarah, this was felt to be the best option.

After Sarah healed from her surgery, she began eating much better and was smiling more, and the incidence of her head-banging behavior dropped by 90 percent. This points to the likelihood that she had been experiencing significant dental pain for years.

While this was a heart-breaking case, it’s all too common. Remember that just because someone has always had a particular behavior, it does not mean it’s not due to an underlying, treatable cause.

The Authors

Ley Linder is a Board-Certified Behavior Analyst with an academic and professional background in gerontology and applied behavior analysis. Ley’s specialties include behavioral gerontology and the behavioral presentations of neurocognitive disorders, in addition to working with high-management behavioral needs for dually diagnosed persons with intellectual disabilities and mental illness. He is an officer on the Board of Directors for the National Task Group on Intellectual Disabilities and Dementia Practices, works closely with national organizations such as the National Down Syndrome Society, and is the owner/operator of Crescent Behavioral Health Services based in Columbia, SC.

Dr. Craig Escudé is a board-certified Fellow of the American Academy of Family Physicians and the American Academy of Developmental Medicine and is the President of IntellectAbility. He has more than 20 years of clinical experience providing medical care for people with IDD and complex medical and mental health conditions. He is the author of “Clinical Pearls in IDD Healthcare” and developer of the “Curriculum in IDD Healthcare”, an eLearning course used to train clinicians on the fundamentals of healthcare for people with IDD.

Health-related Resources for people with IDD and Their Supporters

Health-related Resources for People with IDD and Their Supporters

By Craig Escudé, MD, FAAFP, FAADM
Published by EP Magazine  |  January 2023

With significant health disparities noted in people with IDD, it is important that people with intellectual and developmental disabilities (IDD), their supporters, and healthcare providers educate themselves on the different health risks that are more commonly seen in people with IDD and about what can be done to prevent serious complications. Supporters and healthcare providers are often challenged in finding helpful information related to healthcare for people with IDD. As a physician who started practicing in this field in the 1990s, finding clinically relevant information about healthcare for people with IDD was challenging. Fortunately, over the past several years, more resources have been developed that relate specifically to healthcare issues and improving health equity for people with IDD. In this article, you’ll find a listing of websites, tools, and training available to provide information and guidance to you, whether a family member, paid supporter, healthcare provider, or person with IDD.

 

Books

Clinical Pearls in IDD Healthcare provides easy-to-understand and clinically relevant information to clinicians and supporters of people with IDD. The book is centered on “clinical pearls,” which are small bits of free-standing, clinically relevant information based on experience or observation. They are part of the vast domain of experience-based medicine and can be helpful in dealing with clinical problems for which controlled data do not exist.
You will find 1-2 page documents covering 55 health-related conditions commonly seen in people with IDD. Topics include medical causes of adverse behavior, sexuality, quality of life, end-of-life care, dental care, polypharmacy, common preventable cause of illness, aging with IDD, and much more. The guide is used by physicians, supporters, nurses, and family members to gain an understanding of the many health issues that are more common in people with IDD. For family members, it can be helpful for self-education but also as a means to provide concise information to physicians who may appreciate additional clinical details related to IDD healthcare.

Electronic Learning Courses

For clinicians looking to receive additional training in IDD Healthcare, the Curriculum in IDD Healthcare is a web-based Continuing Medical Education-approved eLearning course that teaches the fundamentals of IDD healthcare that were likely not taught in clinical training programs. It’s a 6 module, self-paced course that has been studied and shown to significantly improve clinicians’ clinical confidence in providing healthcare to people with IDD. It’s currently used in medical and nursing schools and by practicing clinicians throughout the United States.

The Fatal Five eLearning courses are excellent programs that teach learners about the top preventable causes of illness and death in people with IDD. The specific topics covered in these 7-module courses include discussions about aspiration, dehydration, seizures, bowel obstruction, sepsis, and gastroesophageal reflux, as well as a discussion on knowing when to act to avoid serious complications. The Fatal Five Fundamentals is geared to teach direct support professionals and family members about these topics. The Fatal Five Advanced course teaches about the same conditions at a more clinical level, which is great for nurses.

 

Websites

Special Olympics has a webpage dedicated to health resources for people with IDD. Topics include Health Promotion, Fitness, Health Smiles (dentistry), and many other health and wellness resources.
The Eunice Kennedy Shriver National Institute of Child Health and Human Development has an extensive list of IDD health resources for patients, healthcare providers, and researchers. You’ll find general and condition-specific information, including links to related entities such as the Association for University Centers on Disabilities.
The Vanderbilt Kennedy IDD Toolkit is an excellent resource guide for clinicians and others relating to several common genetic conditions often associated with IDD. In addition to general guidance, there is specific guidance for health screening about conditions like Autism, Down Syndrome, Fragile X, Prader-Willi, and other conditions, as well as a number of valuable resources relating to topics such as informed consent, communication, and behavioral health.

Organizations

There are two organizations for healthcare providers that offer resources online and provide educational opportunities at their annual conferences. The American Academy of Developmental Medicine and Dentistry focuses on physicians and dentists and the Developmental Disabilities Nurses Association for nurses. Both organizations are excellent resources where providers can enhance their skills and knowledge in providing IDD healthcare and collaborate with others in the field.
Several organizations provide valuable information about specific genetic conditions and syndrome, including the Prader-Willi Syndrome Association, the National Association for Down Syndrome, the National Autism Association, the Autism Society of America, the National Fragile X Foundation, the Angelman Syndrome Foundation, and others. Many of these societies have information tailored to supporters, family members, healthcare providers, and researchers relating to their specific syndrome.

Finding Additional Resources

The internet is filled with resources, but not all are what I’d call “good.” And some contain misinformation or are more based on people’s opinions rather than what is generally considered acceptable and reliable health-related information. When looking for resources, I’d recommend going to websites that are from known entities such as well-known hospital systems, governmental agencies like the CDC and the NIH, or official websites for whatever you are looking for. I also recommend reaching out to people you know in your community to see what resources they recommend. Talk to trusted physicians and nurses or call your local hospital to see if there might recommend a particular resource.

Final Thoughts

I’m sure that there are many excellent resources I have left out. But hopefully, the ones listed here will be useful to many. Educating ourselves about our health and the health of the people we support can help us make better-informed decisions, which can dampen the anxiety and fear we might face when dealing with health challenges.

 

About the author:

Dr. Craig Escudé is a board-certified Fellow of the American Academy of Family Physicians and the American Academy of Developmental Medicine and is the President of IntellectAbility. He has more than 20 years of clinical experience providing medical care for people with IDD and complex medical and mental health conditions serving as medical director of Hudspeth Regional Center in Mississippi for most of that time. While there, he founded DETECT, the Developmental Evaluation, Training, and Educational Consultative Team of Mississippi. He is the author of “Clinical Pearls in IDD Healthcare” and developer of the “Curriculum in IDD Healthcare,” an eLearning course used to train clinicians on the fundamentals of healthcare for people with IDD.

Health Risk Informed Telemedicine and How it Benefits People with IDD

What is Health Risk Informed Telemedicine and How Can it Benefit the People You Support

By Lorene Reagan, Director of Public Relations, IntellectAbility 

Janet is a 50-year-old woman who has a history of urinary tract infections. It’s Saturday afternoon, and she’s complaining of pain with urination and refused to eat her lunch earlier in the day. The group home staff bring her to the emergency room, where she waits for 6 hours to be evaluated and treated, with the same antibiotic she’s received in the past. Janet and her housemates, who’d planned on attending a holiday party that evening, were unable to go because Janet, the house van, and the only other direct support professional on duty were stuck in the emergency room

Sound familiar? This scenario and other similar scenarios play out in group homes every day, even though the availability of telemedicine as an alternative to emergency room visits has expanded significantly over the past few years. Unfortunately, people with intellectual and developmental disabilities (IDD) have historically not had the same access to what many of us now consider routine healthcare supports, including telemedicine. This is particularly concerning since people with IDD tend to have more significant medical needs and poorer health outcomes. And traditionally, they’ve required more emergency care but are more likely than the general population to experience adverse complications or death while hospitalized. According to a 2022 study, people with IDD were 2.7 times more likely to experience harm while hospitalized.

In this condensed webinar recording, learn more about how IntellectAbility, StationMD, and The Missouri Division of Developmental Disabilities facilitate interoperability between the Health Risk Screening Tool and StationMD’s telehealth platform to provide real-time health risk information to telehealth providers.

What can we do to prevent unnecessary emergency room visits and potentially preventable (and risky) hospitalizations for people with IDD? One solution is to ensure people have access to IDD-competent, health-risk-informed telemedicine support.

According to Dr. Maulik Trivedi, Chief Strategy Officer at StationMD, “Health risk informed access to IDD competent telemedicine supports is a game-changer for people with IDD. Our partnership with IntellectAbility starts with educating our physicians using the Curriculum in IDD Healthcare and now includes access to the person’s health risk information using a new interface between the Health Risk Screening Tool (HRST) and the StationMD telemedicine platform.” 

“As telemedicine usage increases, we at IntellectAbility are working to ensure Janet and others with IDD have equitable access to IDD-competent, risk-informed telemedicine. The HRST-StationMD interface is a great starting point for achieving health equity for people with IDD and preventing unnecessary emergency department visits and hospitalizations,” said Dr. Craig Escudé, IntellectAbility President. 

For more information or to request a demonstration of the HRST, please contact us!

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The Health Risk Screening Tool (HRST): Aspiration

Why Doesn’t the HRST Concern Itself with Aspiration?

Actually, it does.

Several of the Rating Items on the HRST cover each of the areas of risk associated with aspiration.  

Item A. Eating – Identifies those who are fed via a tube or have significant risks or supports in place to eat safely.  

Item B. Ambulation – (Yes, Ambulation) tells you who needs significant support to maintain a seated position due to significant physical deformity or problems with trunk control.  

Item G. Self-Abuse – Looks at behaviors like rumination, hand-mouthing, pica, food stuffing, or any other behaviors that place the person at risk of an aspiration event.  

Item K. Gastrointestinal (GI) Conditions -Focuses on those who have such conditions as GERD or who have behaviors that may indicate unidentified reflux.  

Item P. Nutrition – Identifies several factors, including unplanned weight loss and suspicious lab values, which may indicate that a person has issues that would predispose them to respond poorly to an aspiration event. The person will have a score of 4 in this Rating Item if they have had one or more hospitalizations for aspiration within the last year.  

And if they had a severe occurrence, Rating Item Q may be scored due to the interventions needed to care for the person following the incident. 


Don’t forget the HRST Considerations! Once the Rating Items are accurately scored, the problem is half-managed. 

One of the unique features of the HRST is that once it spots trouble, it generates a plethora of helpful suggestions in the form of Service and Training Considerations. When a person receives a score on any of the above-mentioned items, HRST Considerations are generated to support the team in guiding the person out of harm’s way. These include assistance from appropriate professionals and training of direct caregivers in areas like positioning and seating, behavioral supports, mealtime planning, returning to oral feeding when possible, and many, MANY others.  

If you have concerns about a person for whom you provide services, please take time to review the HRST Considerations. If you have questions our clinical support staff is available to discuss these concerns with you at your convenience.  

Request a demonstration and price quote of the HRST today!

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Diagnostic Overshadowing – A Danger to People with IDD

Diagnostic Overshadowing – A Danger to People with IDD

By Craig Escudé, MD, FAAFP, FAADM | November 2022 | 8 Minute Read

As published in Exceptional Parent Magazine, a publication providing practical advice, emotional support, and the most up-to-date educational information for families of children and adults with disabilities and special healthcare needs. We invite you to subscribe by visiting their website. 

Mitchell was taken to the ER because his supporter noted that he was becoming noticeably agitated, was refusing to eat and had begun biting his arm intermittently. His supporter, who knew him well, recalled how he had done this a few times in the past, and most of the time, he was eventually found to have some underlying condition that caused him discomfort. Unfortunately, on some of those previous occasions, it took several clinician visits to get to the right diagnosis.

Because Mitchell does not use words to communicate, it can be quite challenging for clinicians to determine what might be going on. Once, his supporter recalled, he had a dental abscess that caused the same behavior, and it wasn’t until after going to the ER and having multiple tests done, seeing a primary care physician and a psychiatrist due to his self-abusive behavior, and being started on 2 different behavioral medications, that an astute nurse who had experience in the IDD field insisted on a dental exam. Once his dental abscess was treated properly, he returned to his usual, pleasant self, and his behavior medications were discontinued.

Diagnostic Overshadowing
When a person’s symptoms or behavior are attributed to their disability without looking for treatable underlying medical causes, it is called “diagnostic overshadowing,” which was the recent focus of a Joint Commission Sentinel Event Alert released in June of 2022. In it, they state that “diagnostic overshadowing contributes to health disparities and is of particular concern in groups experiencing health disparities, such as individuals with disabilities.” In addition, “individuals with disabilities are at greater risk of diagnostic overshadowing” and “the potential of diagnostic overshadowing presents added risk to individuals with disabilities.” I could not agree more with those statements. The Alert goes on to state that “Speed, stress, and lack of training contribute to diagnostic overshadowing.” I believe that of these three, the latter, “lack of training,” is the factor that we can do the most about.

Medical schools and other health professional schools should be required to provide training to students specifically relating to providing healthcare to people with intellectual and developmental disabilities (IDD). In order to address diagnostic overshadowing, it is essential to educate clinicians about common presentations of treatable medical illness in people with IDD, medication management, and The Fatal Five, which are the top causes of preventable morbidity and mortality in people with IDD. The Fatal Five includes aspiration, constipation, dehydration, seizures, and sepsis with the addition of gastroesophageal reflux. In addition, education on physical and nutritional supports which relates to physical and nutritional measures to facilitate safety in eating and bowel elimination,  co-occurring mental illness, vitamin D deficiency, differences in dementia presentations, and other clinical topics, are vital to improving health and wellness for people with IDD.

You may notice that the topics I listed go beyond what one might call “disability competency” and involve specific medical conditions. While learning about making healthcare facilities more physically accessible, creating calm environments for people with sensory differences, and learning how to best communicate with people with disabilities and their supporters are extremely important, there are actual, specific clinical evaluation and diagnostic skills and concepts that healthcare professionals should be taught. And the responsibility lies with health professional schools, medical societies, and licensing and regulatory bodies to ensure these skills are taught to students and clinicians already in practice so the estimated 10 to 16 million people in the US with IDD can count on them to reduce health inequities, avoid preventable illness and death, and eliminate unnecessary suffering from unmet healthcare needs.

Let’s get back to Mitchell.
At the emergency room, Mitchell and his supporter met Sarah, a nurse who received her degree from a school that taught IDD healthcare principles. Sarah spoke with Mitchell directly, in plain language, and asked Mitchell to sit down and demonstrated, one at a time, how she was going to check his blood pressure and other vitals, then escorted Mitchell to a quiet room and notified the physician that Mitchell had an intellectual disability and was ready to be seen. Mitchell then saw Dr. Smith, who had recently completed an online training course provided through his state’s developmental disabilities agency. In that course, Dr. Smith learned about diagnostic overshadowing and the many different ways that people with IDD might express pain and discomfort and the tendency for overuse of psychotropic medications to control behavior. Dr. Smith spoke to both Mitchell and his supporter and asked a number of questions relating to common causes of pain in people with IDD. Dr. Smith learned that Mitchell seemed to become more aggressive around mealtimes and refused to eat. He was also waking up at night yelling for no apparent reason while curling up into a fetal position. Dr. Smith then evaluated Mitchell for gastrointestinal issues. He found that Mitchell had severe constipation which is one of the most common preventable causes of illness in people with IDD. Dr. Smith provided prompt treatment, and upon discharge, Dr. Smith recommended additional fiber and fluids and to follow up with his regular doctor if the symptoms were not better within 24-48 hours.

Mitchell went back to his home, and the next day, he was back to his usual self. Both Mitchell and his supporter were so pleased that the healthcare staff treated them respectfully, listened to Mitchell’s story, and had specific training about the healthcare needs of people with IDD. When health professional schools implement this vital training, better health and lower rates of unnecessary suffering for people with IDD will surely follow.

Advancing Health Equity For People With Intellectual And Developmental Disabilities

By Dr. Craig Escudé  |  Oct. 20, 2022   |  7.5 Minute Read

As published on Health Affairs Forefront 

There are numerous health inequities for people with intellectual and developmental disabilities (IDD). They experience lower rates of preventive screening; higher rates of obesity, diabetes, and cardiovascular disease; lower life expectancy; and higher rates of pregnancy complications. If that’s not enough, they have been at nearly six times greater risk of dying from COVID-19.

What is driving these disparities?

There are a number of contributing factors, including unconscious bias against people with disabilities, physical access barriers, and inequities due to unmet social determinants of health, to name a few. But there is one area where health care policymakers and leaders can have an immediate impact for the 10 to 16 million people with IDD in the US. That is: by educating the health care workforce to meet the needs of people with intellectual and developmental disabilities.

I started practicing in this hidden and unknown field of medicine in the late 1990s. As medical director for a large, state-run program for people with IDD, I was put in charge of the health care of several hundred people with severe and profound levels of intellectual and developmental disabilities. At first, I thought, “No worries, it’s just like any other area of general practice.” But it was only a matter of a few days before I realized how ill-prepared I was, even as a board-certified family physician, to meet these individuals’ health care needs.

Educating physicians, nurse practitioners, physician assistants, nurses, physical and occupational therapists, dentists, and other clinicians is paramount to reducing health inequities for people with IDD. And I’m not the only one saying this. According to the 2022 National Council on Disability’s Health Equity Framework for People with Disabilities, “comprehensive disability clinical-care curricula [should be required] in all US medical, nursing and other healthcare professional schools.”

Most clinicians are not taught the clinical diagnostic skills to accurately diagnose and develop treatment plans for people with IDD. Yes, most clinicians are trained to take care of many of the specific medical conditions that people with IDD may experience, such as aspiration pneumonia, bowel impaction, seizures, gastroesophageal reflux, and the like. But the greatest gap in training lies in teaching students how these conditions often have different presenting signs and symptoms in people with IDD.

 

Diagnostic Overshadowing

Michael is a 35-year-old man with a severe level of intellectual disability who lives in a group home. He begins to become aggressive throughout the day, wakes up at night yelling, finds various objects on the floor, and starts eating them. Initially, it is noted by his support staff that the aggression seems to occur at or just after mealtime, but after a few weeks, the behavior worsens and starts occurring before mealtimes and at bedtime. An untrained clinician might very easily attribute these changes to the fact that Michael has an intellectual disability, and “that is just what people with IDD do.” They might even recommend that he be started on a psychotropic medication or sleep aid due to the agitation, aggression, and insomnia.

Such circumstances are often described as “diagnostic overshadowing”—any situation in which a clinician reflexively attributes a person’s symptoms or behavior to their disability instead of looking for treatable underlying medical causes. It was the recent focus of a June 2022 Joint Commission Sentinel Event Alert, which states that “individuals with disabilities are at greater risk of diagnostic overshadowing” and that “the potential of diagnostic overshadowing presents added risk to individuals with disabilities.”

How would Michael’s symptoms and behaviors be treated by someone educated and experienced in providing health care for people with IDD?

With the right training, a clinician would be far more likely to recognize that Michael may be agitated before and around mealtimes because he is experiencing pain associated with gastroesophageal reflux. He is waking up yelling at night because reflux symptoms often occur more frequently when a person is lying down. He is exhibiting pica behavior—that is, eating things that are not food—because every time he swallows, he washes the acid back down. A trained clinician would be far more likely to prescribe an acid-reducing medication to treat the underlying condition, instead of a psychotropic medication that would do nothing for the reflux and could likely make things worse.

To address diagnostic overshadowing, it is essential to educate clinicians about common presentations of treatable medical illness in people with IDD, medication management, and The Fatal Five conditions that are the top causes of preventable morbidity and mortality in people with IDD. In addition, education should highlight physical and nutritional supports, co-occurring mental illness, vitamin D deficiency, differences in dementia presentations, and other challenges that are unique to caring for people with IDD.

 

Looking Forward

Where do we go from here?

  1. First, policymakers must encourage local hospitals and clinicians’ offices to provide training on caring for people with IDD to their clinical staff.
  2. Second, medical schools, nursing schools, and other health professional training programs should incorporate mandatory disability-competent training for their students.
  3. Third, we must raise awareness among clinicians and health system leaders about IDD-related resources and training options for their staff through such associations as the American Academy of Developmental Medicine and Dentistry, the Developmental Disabilities Nurses Association, the Institute for Exceptional Care, and such resources as the Curriculum in IDD Healthcare.
  4. Fourth, legislators and medical societies should also promote or require education in this area.
  5. Finally, managed care organizations should also provide training to their health teams about this important aspect of health care.

With better education of the health care workforce, anyone, with or without a disability, will be able to present to any clinician’s office or hospital and receive at least a basic level of competent and compassionate health care—a good start toward health equity for all.

Who knows best what’s right for me? Me or You?

DISCERNING THE PROPER BALANCE BETWEEN WHAT IS IMPORTANT FOR A PERSON AND WHAT IS IMPORTANT TO A PERSON    |   6 MIN READ

By Dr. Craig Escudé, MD, FAAFP, FAADM
Published by Helen: The Journal of Human Exceptionality Issue No. 5 – October 2022, pg 36

Who knows best what’s right for me? Me or You? The answer is likely both, depending on the situation. If I’m looking for a job that is fulfilling to me, while I might listen to suggestions from others, I’m really the best person to make that decision. If I’m trying to decide if the degree of heart blockage I have is best treated with medications or surgery, I’ll be listening to the cardiologist for that one, for sure. Abilities and support for decision-making of people differ immensely, and with that comes varying capacities to make what most might consider “good” choices in life. Person-centered support is about helping discern the proper balance between what is important FOR a person and what is important TO a person.

For people with IDD who are receiving supports and services, at least in my experience, the type of support provided is usually more heavily weighted on what is important FOR the person, leaving less room for the person to be able to make decisions and choices in their own lives that are important TO them that will help them lead more fulfilling lives. It’s often easy to understand why, especially in the name of keeping people safe. But an interesting finding published by the Council on Quality and Leadership in 2019 showed that when people have more meaningful work and activity choices in their lives, the number of “challenging behaviors” goes down by a whopping 74 percent. When we have the ability and choice to do things that are important TO each of us, we are more likely to be content with our lives and less likely to be agitated by having to do mostly what others think is right for us. It just makes sense.

Examples of things that we might consider to be “Important FOR” someone include: not smoking, eating healthy, exercising, finding gainful employment, safe driving skills, regular health check-ups, and the like.

Examples of things that fit into the “Important TO” a person category include: choices relating to what they like to eat, where they want to work, what friends they enjoy the company of, what hobbies they prefer, and even the color their room is painted.

Sometimes there are choices that are made that may be important TO someone that are clearly not best FOR them. Smoking, excessive alcohol use, and never exercising are a few examples of these. But many people, with or without disabilities, make choices that are not always best FOR them.

How do we balance supporting people with IDD to do what is good FOR them while supporting their right to make choices for themselves that may not be best FOR them?

Guess what? If this has been a struggle for you as a parent, family member, or employed supporter of a person with IDD, there are actual skills you can learn to help give a person positive control over their lives while assisting them in maintaining a safe lifestyle.

By participating in formal person-centered thinking training, people can learn skills to help them balance safety with choice, protection with freedom, and security with autonomy when supporting people with IDD. Even for people who might communicate in ways other than using words, there are  Person-Centered Thinking skillsets that can be learned that can help supporters identify what brings someone joy in their life.

Skills such as…

  • Good Day/Bad Day and the Rituals and Routines help one discover what brings meaning to a person’s life in a way that works much better than just making a simple list.
  • The Donut skill helps one to maintain focus, clarify expectations, and establish boundaries.
  • The Relationship Map skill helps to identify what relationships are of the most value to a person.
  • The Learning Log skill helps keep track of data whenever a person has a new experience.
  • And the 4+1 is a person-centered skill that captures four key pieces of information to guide a positive next step when helping a person problem-solve.

Person-Centered Thinking skills help those who provide support understand their roles and responsibilities to keep people moving in a direction that is more autonomous and important TO them without sacrificing what is important FOR them, like safety, security, and health.

Visit our Person-Centered Thinking Training Schedule webpage to learn more about person-centered thinking and find a class that fits your schedule. It might be just the thing needed to bring balance to life for both people with IDD and those who support them.

 

Bright, Well-Educated, Strong Work History, But Still Looking for Meaningful Employment

THREE BASIC CONSIDERATIONS FOR MAINTAINING A COMPETENT AND DIVERSE WORKFORCE   |   4 MIN READ

By Lorene Reagan, RN, MS – Dir. of Public Relations, IntellectAbility

In recognition of National Disability Employment Awareness Month, we interviewed Curtis Glover, who holds a Bachelor’s degree in Game Art and Development and is an accomplished graphic artist, public speaker, fundraiser, photographer, disability advocate, and Shaolin Kempo Black Belt. He has a video game collection that dates back to the 1970s and all of the games still work.

Recently Curtis completed an internship at an augmented reality (AR) technology firm and produced over 150 different 3-D models. Others in the internship produced, on average, 20-30 models. His graphic artwork is featured on the T-shirts for Chaos and Kindness, Recycled Percussion’s Emmy-nominated TV show, which focuses on giving back to others and making a difference around the world. Curtis is intelligent, well-educated, easy to talk to, impeccably groomed, and has a strong employment history in retail. Yet he is still struggling to find meaningful employment in his field of study.

 

Why is this?

It may be because Curtis lives with autism, but he is quick to point out that he describes himself as “living with a different ability.” According to the US Department of Labor, Bureau of Labor Statistics August 2022 News Release, there are 11.2 million job openings in the United States, yet many people with disabilities are still struggling to secure and maintain meaningful employment.

Why is this, and what can be done? 

Many talented and highly qualified people with disabilities continue to be shut out of the workplace because of barriers, including a lack of education and awareness about how best to support people with disabilities in the workplace, outdated ideas about the impact of potential accommodations that might be needed, unfounded concerns about productivity and unconscious disability bias. 

According to Curtis, employers could begin to break these barriers down by starting with three basic considerations for developing and maintaining a competent, diverse, creative, profitable, and committed workforce:

  1. First, consider how screening practices that use artificial intelligence (AI) can negatively impact and inadvertently screen out people with certain disabilities. Curtis has submitted over 80 applications in response to online job postings for which he is qualified and received only two responses.
  2. Next, support employees living with autism by providing kind, respectful, timely, and concrete feedback and, when necessary, recommendations for how they can improve their job performance. This is particularly important because success in the workplace is highly dependent upon what is referred to as “soft skills” and, according to Curtis, “social skills and the ability to ‘read’ people can be hard for people living with autism.”
  3. Finally, Curtis would like employers to simply “get to know me and give me a chance to share my skills.” In his own words, “when I set my mind to something, I focus on it until it is done. I am loyal and will work hard to meet your company’s goals”.

There are literally millions of people like Curtis who live with autism and are actively seeking meaningful employment. If you are an employer looking to hire some great talent, why not reach out during National Disability Employment Awareness Month to explore how people with autism can contribute to your company’s success?

About Curtis Glover

If you’d like to get to know Curtis and learn about how his digital artistry and graphic design skills could benefit your organization, you can find him on LinkedIn, and you can email him at curtisglover99 (at) gmail.com. 

Please, May I Have More Data?

By Lorene Reagan
Director of Public Relations, IntellectAbility

Rate-setting considerations for long-term services and supports for people with intellectual and developmental disabilities.

Most actuaries working in the Medicaid space are well acquainted with the acute care rate-setting process. But many may not be familiar with rate setting for Medicaid long-term support and services (LTSS), Home and community-based services (HCBS) for people with intellectual and developmental disabilities (IDD), or the data sources available to inform the rate-setting process. This article introduces the IDD population, their support needs, the most used HCBS services, and the tools that can be used to inform support needs and the IDD-HCBS rate setting process.

Medicaid is the largest funder of LTSS in the U.S. All 50 states and the District of Columbia provide services funded by one or more Medicaid HCBS Waivers, specifically designed to “waive” the provisions within federal Medicaid regulations that historically only paid for services provided in facilities and institutions. Medicaid LTSS waivers allow people with IDD to live in community settings rather than in institutions, facilitating opportunities for community integration and improved quality of life.

According to data published in 2021 by the Institute on Community Integration, an estimated 7.43 million people with IDD live in the United States, and approximately 17% receive services through state IDD agencies. This group’s estimated Medicaid HCBS waiver expenditures were $42.29 billion in 2018.

Some people with IDD live independently in the community and don’t require formal services or support.
Others need support for daily activities such as dressing, bathing, and eating, and for incidental activities such as shopping, cooking, cleaning, and money management. Supports may also be provided to help a person secure and maintain employment, develop relationships, and participate in hobbies, sports, clubs, or worship. There may also be a need for health-related assistance with medications, ambulation, feeding, and other activities to maintain optimal health and manage health risks unique to people with IDD.

Unlike in the past, people with IDD live primarily in community-based settings, not in institutions or nursing homes. Most share a residence with a related family member; some live in group homes, host homes, or adult foster care settings, while others lease or own their own homes.

Services commonly provided under state Medicaid HCBS waiver programs for people with IDD include case management, residential habilitation, community support, personal care, day habilitation, financial management, job coaching, home and vehicle modifications, and assistive technology. Many waivers include self-direct services through which the person selects, hires, and manages their staff and service budget.

Most state Medicaid programs operate their HCBS program for people with IDD using a traditional state-administered Fee-for-Service payment approach, but this is changing with the advent of managed long-term services and supports (MLTSS) programs which employ capitated rates. Unfortunately, there isn’t much experience in this area; while 22 states operated MLTSS programs in 2019, only 10 included the IDD population.

The rate-setting process for HCBS LTSS services is unique and, unlike the approach used in acute care rate setting, focuses mainly on the amount, level, and type of functional, health-related, social, behavioral health, and personal care supports needed for the person with IDD to live successfully in the community.

Each state Medicaid program utilizes the results of various functional screening and assessment tools and other instruments for non-rate setting activities to determine LTSS service eligibility, evaluate level of care, manage health risk, measure acuity, inform resource allocation, and develop service plans. Some are nationally recognized, valid, and reliable instruments and some are “homegrown” tools, having been developed internally. Others are “hybrid” tools based on standardized instruments which the state has customized to meet its unique needs.

In Fee-for-Service programs, states often “tier” LTSS HCBS services. For example, states may have two levels of case management within their Medicaid waiver. A “basic” level and rate are used for people whose needs are more routine, and an “enhanced” level and rate is allowed for those with complex needs, based on assessment findings. In MLTSS, the results of functional assessments and other related data could inform the risk adjustment component of the capitation payment.

As a non-actuary providing subject matter expertise for Medicaid LTSS HCBS rate-setting activities, I learned from my actuary colleagues the value of identifying multiple relevant, valid, and reliable data sources to inform the rate-setting process.

The following are examples of some of the validated tools currently in use that rate-setting teams should consider informing IDD-specific rate setting activities:

  • HRST—Health Risk Screening Tool: web-based health risk instrument that identifies health risks, that, if not addressed, are associated with preventable morbidity and mortality in people with IDD. Six levels of risk are assigned.
  • SIS-A®—Supports Intensity Scale: Adult Version®: standardized assessment tool designed to measure the pattern and intensity of supports that a person age 16 years and older with IDD requires to be successful in community settings. A numerical Support Needs Index is assigned.
  • ICAP—Inventory for Client and Agency Planning: measures adaptive and maladaptive behaviors and is designed for use from infancy to adulthood. Scores that can determine the level of supervision a person needs are generated.

Rate setting for IDD-HCBS is complex and requires multiple inputs and a rate setting team that understands the needs and priorities of people with IDD. Knowing how to select resources that accurately identify support needs, including those required to promote community inclusion and manage maladaptive behaviors, is vital. In addition, because people with IDD have higher incidences of chronic health conditions, lower life expectancies, and difficulty routinely accessing clinically competent healthcare, health risk-related data plays an important role in determining rates. Before selecting the tools to be used in the rate-setting process, the team should evaluate the validity and reliability of each tool and its fitness for use in the rate-setting process.

 

Published by American Academy of Actuaries – Contingencies. Click here to view the article.