Author: IntellectAbility

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.

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.

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.

 

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. 

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.

Learn how person-centered training can help students with intellectual or developmental disabilities.

Josie was a 19-year-old student at a local university. She was known for her positive attitude, kind heart, and school spirit. So much so that she had a few pairs of colorful glasses to match her socks and gameday jerseys. Connecting with her sorority sisters and being a part of campus life was essential to Josie. Most of all, she loved animals, particularly horses. Early on, she mentioned that her dream was to be a veterinarian. Josie ultimately found a place where she was welcomed and valued for her contributions, but it didn’t begin that way.

Josie has Down Syndrome and was a part of the university’s Inclusive Post-Secondary Education (IPSE) program. These programs offer an alternative to typical pre-vocational programs for students with Intellectual/ Developmental Disabilities (IDD). While each program is unique, the most common goals are inclusion and gainful employment.

According to the Journal for Post-Secondary Education and Disability, approximately 77 percent of IPSE-supported students found gainful employment upon completion compared to 27 percent of people with IDD. They weren’t a part of such programs (Avellone, Camden, Taylor, & Wehmen, 2021). Furthermore, when IPSE programs employed Person-Centered Practices, 100 percent of those who found employment were gainfully employed as opposed to those in sheltered workshops (Zafft, 2004).

Josie’s Transition to College

Like many students, Josie’s transition to college was challenging. She began with hope, but things weren’t going well by midterm. Josie described instructors as friendly but rigid, and while others were kind, she didn’t feel understood or included. She said, “other students treated me like a little kid, and my job coach (Gene) told me I may need to find another program.”

Those who supported Josie weren’t meaning to be harsh. There was a breakdown in communication and more to the story. Josie had difficulty with words. When her peer mentors (other students who provided support) misunderstood her, they would finish her sentences and reassure her with kind words and maybe a hug. Josie felt this was condescending. Gene wanted her to succeed but could only work with the internships available. Josie wanted to work with a veterinarian, but that wasn’t an option. So, Gene told her about a dog boarding facility with a pre-vocational program.

Josie’s parents were concerned but convinced her to continue until the academic year ended. She adjusted but wasn’t content. She kept to herself, and when in social settings, she often wouldn’t speak. She stopped turning in assignments and asked her peer mentors to do her homework. She had an internship at a local business office but found the work boring and didn’t connect with anyone. All of Josie’s essential needs were met. She felt safe… but miserable. As May approached, Josie told the ISPE program director, Evalyn, that she didn’t think she’d be returning in the fall.

After meeting with her team, Evalyn believed everyone supporting Josie meant well but didn’t know how to help. Evalyn reviewed Josie’sadmission assessments. They had valuable information, but there was a lot to digest. Also, the assessments were in clinical language and weren’t specific to her current social needs. Asking peer-mentors to data-mine so much information was unreasonable. It became clear to Evalyn that her team needed better information and more training. Fortunately, Evalyn and a colleague had taken a Person-Centered Practices class two years prior. She contacted the class facilitator for help, and they met online to review best practices.

 

Person-Centeredness

Person-Centeredness is about people with disabilities having ownership and reasonable control of their own lives. The goal of support is to get people closer to the things they value and, in the process, for the person to have an equitable experience with their peers. For that to happen, two foundations are required, a Person-Centered mindset and Person-Centered skill sets.

Evalyn believed her team members had a Person-Centered mindset. Respecting students as capable young adults was a prerequisite for all who provided support. Her team members had big hearts and great intentions but needed the training to put Person-Centered skill sets into practice.

Person-Centered skills include discovery skills which use observation instead of just asking questions to gather information about what the person values and how to help. Without discovery, plans won’t be specific and usually reflect what others value for the person. Learning skills are required to deal with changes like new information, obstacles, and conflict. Without learning skills, plans get off track. Management skills clarify responsibilities for those who provide support. Without management skills, peer mentors won’t find the proper balance, offering too little support, leading to anxiety or too much support, promoting helplessness.

 

Finally, given how often peer-mentors change, Person-Centeredness requires the information gathered to be easily accessible in a Person-Centered Description (PCD). Unlike traditional assessments, a PCD is organized, concise, and in everyday language. Anyone providing support can quickly and easily understand how to help.

The following week Evalyn scheduled Person-Centered Training for her entire team.

Soon after, Evalyn reached out to Josie and her parents. Using discovery skills learned during training, the team realized Josie wasn’t interested in being a veterinarian but wanted to work with horses. Gene found a stable where Josie could work and learn equestrian care. Peer mentors stopped finishing Josie’s sentences and learned to listen through observation. Using learning skills, the team helped her navigate sorority pledge week. Finally, management skills were employed, so support wasn’t provided where it wasn’t needed. This information was kept current in a brief Person-Centered Description and reviewed every time Josie was matched with a new peer mentor.

Josie returned in the fall. There were obstacles and difficult days for sure. Still, by Homecoming, Josie was waving to others on her sorority’s float in her colorful glasses that matched her socks and favorite jersey. Josie was back to herself. After graduation, Josie found a job where she helps new owners learn to care for their horses.

 

Training in Person-Centered Support doesn’t make life perfect,
but it made life better for Josie and everyone who supported her.

 

 

 

Published by Training Magazine. Click here to view the published article. 

 

References

Avellone, L., Camden, J., Taylor, J., & Wehmen, P. (2021). Employment Outcomes for Students with Intellectual Disabilities in Postsecondary Education Programs: A Scoping Review. Journal of Postsecondary Education and Disability, 6-8.

Zafft, C. H. (2004). College Career Connection: A Study of Youth with Intellectual Disabilities and the Impact of Postsecondary Education. Education and Training in Developmental Disabilities, 39,45-53.

 

By Craig Escude, MD, FAAFP, FAADM
This article was originally published in Helen: The Journal of Human Exceptionality, a publication of the American Academy of Developmental Medicine and Dentistry. We invite you to subscribe by visiting their site.

Let’s Get Something Straight: Ensuring Equitable Healthcare for People with IDD is not the “Medical Model!”

The “Medical Model” is a term used to describe an outdated way of viewing intellectual and developmental disabilities and is associated with the approach taken during the years when large numbers of people with IDD lived in institutions, where doctors and nurses were the primary drivers of service delivery. The Medical Model sees disability as a “defect” within the person and contends that the person needs to be “cured” or “fixed” in order for them to have a good quality of life. Seeing a disability as a deficit can lead to lower self-esteem and perpetuate the mindset among clinicians that people with IDD have a lower quality of life and do not deserve the same level of healthcare that people without IDD receive. The Medical Model can promote feelings of sympathy, pity, or shame towards people with IDD, and often, people are unaware of this bias.

The Medical Model has been rejected by many in favor of the Social Model of disability. This model focuses on the intersection between disabilities and the environment within which the person lives and promotes the creation of environments that are more accessible for all. The Social Model calls for an end to discrimination through education, accommodation, and the universal design of structures and environments to facilitate accessibility for everyone.  Within the Social Model, there is an understanding that people with disabilities should have equitable access to qualified nursing, medical and other supports, sufficient to ensure they receive the same functional supports, preventive care, and ongoing medical care as people who do not have a disability.

Attaining disability clinical competency among healthcare providers and ensuring equitable access to health care for people with disabilities is in direct opposition to the Medical Model as is identifying health risks and educating supporters about how to recognize them and mitigate them.  Educating healthcare providers and other supporters to meet the health care needs of people with IDD is exactly what the Social Model of disability calls for; changing the environment to better meet the needs of everyone. Having access to disability-competent healthcare providers who recognize the sometimes unique health needs of people with IDD, who understand the link between adverse behaviors and the need to look for underlying, treatable medical conditions, and who recognize that people with IDD are people first will go a long way to improving overall health, wellness and quality of life for people with IDD.

Let’s not say that the term “medical” is related to the medical model. Let’s not say that using the term “patient” to describe a person who is receiving healthcare suddenly takes on a derogatory meaning when applied to people with IDD. Anyone who seeks medical care is appropriately called a “patient.” And definitely, let’s not throw around the term “Medical Model” any time someone talks about the importance of equitable access to evidence-based preventive and ongoing healthcare for people with or without IDD. We should never go back to the medical model of disability, but advocating for well-trained, disability-competent clinicians and supporters of people with IDD who can recognize, prevent and appropriately respond to health issues is a far cry from the errant views of the past and are grand steps to reducing health disparities and achieving health equity for all.

By Craig Escudé, MD, FAAFP, FAADM

Have you ever accompanied someone with an intellectual disability to a medical appointment due to a new, concerning behavior, only to be told by the clinician that they are doing this just because of their disability? That’s diagnostic overshadowing- a term that describes when clinicians attribute a new or untoward behavior to the fact that the person has an intellectual disability rather than looking for some underlying medical or environmental cause. And it is all too common in the medical profession. Why? The primary reason is the lack of training of clinicians to adequately meet the healthcare needs of people with intellectual and developmental disabilities (IDD).

The National Council on Disability released the Health Equity Framework for People with Disabilities in February of 2022. In it, the Council calls for 4 main changes that are needed to improve healthcare for people with disabilities, including those with IDD:

1. Designating people with disabilities as a Special Medically Underserved Population (SMUP) under the Public Health Services Act
2. Requiring comprehensive disability clinical-care curricula in all US medical, nursing, and other healthcare professional schools and require disability competency education and training of medical, nursing, and other healthcare professionals
3. Requiring the use of accessible medical and diagnostic equipment
4. Improving data collection concerning healthcare for people with disabilities across the lifespan

All four, along with the thirty-five additional recommendations in the document are important to achieve health equity for people with disabilities, but let’s talk about number two in more detail.

Disability Competency versus Clinical Competency

Becoming disability competent should be a requirement of every clinician, hospital, and healthcare payor entity including health maintenance organizations and fee for service payors. But, for clinicians, disability competency is not enough. A simple definition of disability competency is where the basic premises of the world of people with IDD is understood. Examples might include understanding different ways a person may communicate, appreciating the network of support upon which many people with disabilities rely, and understanding the necessity of creating physical environments where people with disabilities have equal access with the availability of scales that can weigh people in wheelchairs, exam tables that can move to lower positions to allow access, and the like. But healthcare providers must go beyond this level of understanding to attain true disability clinical competency. They must acquire the clinical and diagnostic skills that foster the provision of competent healthcare to people with IDD.

Two main groups of clinicians must be trained to achieve disability clinical competency. The first group consists of clinicians in training such as medical students, nursing and nurse practitioner students, dental students, and allied health professional students. The second group is made up of clinicians that are already out in practice. Two different approaches must be taken to achieve clinical competency among both groups.

 

Healthcare Professional Students

IDD healthcare curricula must be incorporated into every clinical training program in the US and abroad. There are two main components to achieving clinical competency: didactic education and hands-on clinical experience.

Didactic instruction should focus on teaching information such as what behaviors might be pointing to specific, treatable underlying medical or dental conditions in a person who does not uses words to communicate, the steps to take to evaluate the cause of newfound aggressive behavior in a person with IDD, the most common causes of preventable illness and death in people with IDD, and other clinical and diagnostic lessons.

Didactic training should be accompanied by experiential training where students interact with people with disabilities on different levels to gain insight into and appreciation of the lives of people with IDD. Standardized patient scenarios and real-life clinical experiences will help develop the skillsets needed to provide appropriate clinical assessments and medical treatments to people with IDD.

One of the challenges to teaching these skills is the limited number of currently available experts in this field to teach these courses. If every medical, nursing and allied health professional training program in the US wanted to employ clinicians with the expertise to teach this information in their schools, they would have a difficult time finding qualified clinicians to do so. Fortunately, with advances in eLearning courses, this type of information is more readily available than ever before. In a matter of days, a school could bring an IDD expert to their students through eLearning.

Practicing Clinicians

Society cannot wait until every school implements IDD training, all of their students graduate, and then replace every practicing clinician to attain a disability clinically competent workforce. Healthcare providers who have completed their training and are out in practice also must be trained to improve the availability of IDD competent healthcare providers. The challenges here are a bit different. Many clinicians are not aware of their own need to develop clinical competency in this area. It’s similar to the old saying, “we don’t know what we don’t know.” However, once they begin to gain some insight into this world, it becomes clear that additional information and skills about IDD healthcare would be of great benefit to all patients in their practices with vulnerabilities including people who are aging, those with dementia, people with traumatic brain injury and others. But how do we get this information to practicing clinicians who are busy with, well, practicing?

To do this, the information must be concise, practical, and afford an opportunity to fulfill continuing medical and nursing education requirements. Adding “teeth” in the form of this type of training being required by their professional accreditation academies or state licensing boards would also provide incentives. Again, one of the best ways to deliver this type of training is through online eLearning courses. They are efficient and can be done on the clinicians’ own time and at their own pace.

In recent years, there has been an increase in focus being placed by different organizations to increase clinical competency among healthcare providers. The American Academy of Developmental Medicine and Dentistry (AADMD.org) has fostered the National Curriculum Initiative in Developmental Medicine which has cultivated the implementation of varying degrees of training in over 20 medical schools. The Developmental Disabilities Nurse Association (DDNA.org) credentials nurses to provide healthcare for people with IDD. The Institute for Exceptional Care (ie-care.org) is working to improve access to competent healthcare for people with IDD addressing both educational as well as the payor components needed to achieve this goal. IntellectAbility (ReplacingRisk.com) is a company that focuses on health risk identification and prevention as well as training of all levels of supporters and has eLearn courses specifically geared to teaching physicians and nurses about IDD healthcare. One particular course, the Curriculum in IDD Healthcare, is used in medical and nurse practitioner schools as well as by practicing clinicians and has demonstrated efficacy in improving clinical confidence in IDD healthcare for both students and practicing clinicians.

Non-clinician supporters

What can non-clinicians do to improve IDD clinical competency? Here are a few thoughts:  Educate healthcare providers about organizations and options to receive IDD clinical training. Work with medical licensure boards and specialty organizations to encourage or require IDD clinical training. Encourage and support health professional schools to incorporate IDD training into their curricula. And reach out to payors to encourage them to work to adjust payments to help foster better healthcare provision for people with disabilities.

With the increase in interest in this area and continued movement toward improving training opportunities for students and practicing clinicians, we will come to a place where anyone with any level of disability will be able to present to any clinician’s office or hospital and receive a basic level of compassionate and competent healthcare. Let’s work to make this sooner rather than later.

 

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.