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.

Achieving Educational Equity in Universities With Person-Centered Thinking Training

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 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. 



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.


Missed Diagnosis: How Many Times Have You Seen This Happen?

Jerome is 22 years old. He enjoys NASCAR racing, going to the beach, and eating out at restaurants. He works 12 hours per week at a local grocery store and, in his leisure time, likes to watch sports on TV with his dad and brothers. Jerome uses a wheelchair and requires assistance with activities of daily living, including eating, dressing, and bathing. He communicates primarily through gestures, facial expressions, noises, and pictures, using the basic communication device he received in high school. He lives at home with his parents, who are his primary caregivers. He also receives personal care and employment support during the day from a paid supporter named Cecelia.

Cecelia recently approached Jerome’s mother because she has been noticing changes in his behavior over the past several months. Typically upbeat, Jerome has been frowning more and is less interested in activities that used to make him happy. Last week, when asked if he wanted to stop at a local café for lunch, he shook his head to indicate “no,” yelled, and banged his wheelchair. And this week, Jerome used his communication device to indicate “sick” and “stay home” on a workday-something he had never done before.

Jerome’s mother was also seeing subtle changes in Jerome that were concerning. She shared with Cecelia that Jerome was groaning a lot, not sleeping well at night, and seemed to be eating less than usual at mealtimes. He recently yelled at his brother and purposely knocked a bowl of snacks on the floor while getting ready to watch the Sunday afternoon football game- something he usually loves to do.   He had also started chewing on his hands, causing chafing and redness.

When asked about how he was feeling, Jerome dropped his head, grimaced, looked away, and, using his communication device, indicated he felt “sick,” “tired,” and “mad.”

Jerome’s mother scheduled an appointment with his primary care provider. Unfortunately, this appointment did not go well all around. The provider was new to the practice, as was Jerome, having recently transitioned from his long-time pediatric provider. Jerome and his mother waited for almost an hour past their scheduled appointment time, and when the provider came into the room, she did not acknowledge Jerome, speaking only to his

mother. A cursory exam was done at the same time Jerome’s mother was filling the provider in about his recent behavioral changes and his complaints of feeling sick and mad. In less than 15 minutes, the provider concluded that Jerome was “probably depressed given his situation” and recommended that Jerome be started on tricyclic anti-depressant medication.

In the meantime, Cecelia contacted Jerome’s case manager to inform her of her discussion with Jerome’s mom and to let her know the outcome of his appointment with his primary care provider. The case manager, who was also relatively new to Jerome, thanked Cecelia for the information. Recognizing that Jerome’s symptoms represented a change in health status, she accessed his web-based Health Risk Screening Tool (HRST) record and updated it accordingly.


Using the information provided by the case manager, the HRST recognized the possibility of an undiagnosed gastrointestinal condition as the potential cause of Jerome’s behavioral symptoms and produced a “service consideration” suggesting the need for clinical follow-up to rule out Gastroesophageal Reflux Disease (more commonly known as GERD).

Meanwhile, Jerome was taking his anti-depressant but wasn’t feeling any better. His behavior continued to deteriorate; he lost 12 pounds and called in sick to work so often that he was in danger of losing his job. He was exhausted from lack of sleep, as were his parents.

The case manager called Jerome’s mother to share the service consideration produced by the HRST and assisted her with obtaining a referral to see a gastroenterologist. As luck would have it, the gastroenterologist had a brother with disabilities, was happy to meet and talk with Jerome and his mother, and quickly recognized that Jerome’s “behaviors” were probably related to acid reflux which can cause pain and discomfort at mealtimes and is exacerbated when lying down in bed. Diagnostics were completed, and a diagnosis of GERD was made.

Jerome’s diet was adjusted, and his bed was positioned so that the head of the bed was higher than the foot of the bed. Medications, including antacids and H-2 (histamine) blockers, were ordered. Jerome’s primary care physician was consulted, and the tricyclic anti-depressant was discontinued because a diagnosis of depression no longer seemed appropriate and because this class of medications is to be avoided in people with GERD because it can actually worsen their symptoms.

Within two weeks, Jerome was back to his baseline, smiling, eating, working, and watching the NASCAR races with his brothers.

What happened in this situation?

Jerome was likely the victim of “diagnostic overshadowing,” a phenomenon that stems from cognitive bias and poses a serious health risk for people with intellectual and developmental disabilities (IDD). Often, symptoms that would otherwise be addressed through immediate medical evaluation are discounted and attributed to the person’s IDD. No further assessment is conducted, differential diagnoses are not considered, and medical conditions continue untreated, often while psychotropic medications are being given to “treat” the person’s symptoms. This bias is usually unconscious and can be addressed through healthcare provider education.

Fortunately, Jerome has attentive and knowledgeable caregivers and advocates who understand the importance of “looking beyond the symptoms,” access to a robust health risk management tool, and a disability-competent health care provider. However, there are many others who do not. In order to ensure health equity for all people with IDD, there is a need to:

  1. Ensure health care providers receive education to ensure they are disability healthcare competent
  2. Effectively monitor, identify, and address emerging health risks
  3. Educate support staff to recognize and report symptoms of the “Fatal Five Plus,” conditions most likely to lead to morbidity and mortality for people with IDD: aspiration, constipation, dehydration, seizures, sepsis, and GERD

IntellectAbility can help. Contact us for more information about the Health Risk Screening Tool (HRST), the Curriculum in IDD Healthcare, and our eLearn course on the Fatal Five.

Ensuring Equitable Healthcare for People with IDD is not the “Medical Model”

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.

Attaining Disability Competent Healthcare

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 ( 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 ( credentials nurses to provide healthcare for people with IDD. The Institute for Exceptional Care ( 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 ( 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.

People with IDD at Risk-The June 2022 Joint Commission Sentinel Event Alert

Juanita is a 53-year-old woman. She has a long history of anxiety and depression. Juanita also has cerebral palsy and an intellectual disability and lives in a community residence for people with intellectual/developmental disabilities (IDD).   

For the past couple of days, Juanita has been experiencing increased anxiety. She tells her supporters she feels more tired than usual, has a poor appetite, and has been having “dizzy spells.” Her supporters reached out to Juanita’s primary care provider, who recommended they give her lorazepam, as outlined in her as-needed medication protocol. But it doesn’t help, and Juanita now says she feels like she is going to die.   

While it is not uncommon for Juanita to suffer from acute anxiety, her supporters contacted the primary care provider again, saying, “something just isn’t right with Juanita.” A telehealth appointment was arranged, during which the provider met with Juanita and her supporters. The provider ultimately recommended Juanita be seen in the emergency room to evaluate her symptoms. A diagnostic workup was done, and it was determined that Juanita was having a heart attack and needed immediate intervention. 

Fortunately for Juanita, she can communicate her symptoms, has supporters who know her well and have been educated in healthcare advocacy for people with IDD, and has a relationship with a primary care provider who understands the value of “looking beyond the behaviors” to explore the potential for an undiagnosed medical condition. But this outcome is a best-case scenario and not the typical outcome for people with IDD because of a phenomenon known as “diagnostic overshadowing,” the topic of a recent Sentinel Event Alert issued by The Joint Commission,  a global driver of quality improvement and patient safety in healthcare and a leading accreditation body for healthcare entities.  

Diagnostic overshadowing is a harm that stems from cognitive bias and poses a serious health risk for people with disabilities. Often, particularly in the case of people with IDD who have co-morbid behavioral health conditions, symptoms that would otherwise be addressed through immediate medical evaluation are discounted and attributed to their IDD. No further assessment is conducted, differential diagnoses are not considered, and medical conditions continue untreated, often while psychotropic medications are being given to “treat” the person’s symptoms.   

“Diagnostic overshadowing is a serious safety and quality concern as an initial misdiagnosis can have a significant impact on quality of life, including the physical and psychological wellness of patients,” says Ana Pujols McKee, MD, executive vice president, chief medical officer, and chief diversity, equity and inclusion officer, The Joint Commission. 

According to the alert, the medical literature provides extensive evidence that diagnostic overshadowing exists within clinicians’ interactions with patients of all ages with physical disabilities or diagnoses such as autism, mobility disabilities, and neurological deficits. Unfortunately, most clinicians are unaware of this because medical and nursing schools do not typically include curricula on healthcare for people with IDD, and most practicing clinicians have not had the benefit of education in disability-competent healthcare.  

The Joint Commission Alert recommends the following to address the serious, life-limiting, and sometimes life-threatening consequences of diagnostic overshadowing:  

  1. Create an awareness of diagnostic overshadowing during clinical peer and quality assurance reviews and by addressing it in training and education programs. 
  2. Use listening and interviewing techniques designed to gain better patient engagement and shared decision-making. 
  3. Collect and aggregate data about pre-existing conditions and disabilities and create EHR prompts for clinicians. 
  4. Use an intersectional framework when assessing patients in groups prone to diagnostic overshadowing to overcome cognitive biases and look beyond previous diagnoses. 
  5. Review your organization’s ADA compliance using the added perspective of diagnostic overshadowing to ensure that it meets the needs of patients with physical disabilities. 

IntellectAbility can help.  

The online Curriculum in IDD Healthcare (CIDDH) includes a section specifically designed to instruct health care professions students and practicing clinicians on how to “unlock the language of behavior.” The training emphasizes how in-depth assessment of behavioral or psychiatric symptoms can lead to diagnosis and treatment of underlying medical conditions. 

The CIDDH also provides concrete recommendations for directly and actively engaging people with IDD in their health management and includes effective communication strategies for those supporting people who may not communicate using words. The training also emphasizes the key role of supporters and family members during the diagnosis and treatment process.  

Upon completion of the online modules, physicians and nurses earn Continuing Medical Education (CME) credits or Continuing Education Credits (CEUs) and are eligible to receive the IntellectAbility Recognized Provider in IDD Healthcare award, indicating their commitment to providing quality healthcare to people with IDD.  

According to Dr. Craig Escude, developer of the CIDDH, “As The Joint Commission recognizes, when providers set aside bias and assumption, they can listen to patients more effectively and therefore treat them more effectively. At IntellectAbility, we have decades of experience teaching person-centered methods to clinicians and caregivers who work in intellectual and developmental disability services. Our programs can help medical providers acquire the skills called for in The Joint Commission Sentinel Event Alert.”


Feel free to call us at 727-437-3201 or email us at

Employing People with IDD as a Way to Help with the Hiring Crisis

Employing People with IDD as a Way to Help with the Hiring Crisis

In this article, we explore successful strategies for recruiting and retaining people with IDD in the workforce and increasing diversity, equity, and inclusion in the workplace.

According to a March 2022 report[1] from the Bureau of Labor Statistics, the employment–population ratio—the percentage of the population that is employed—for people with a disability was only 19.1 percent in 2021, compared to 63.7 percent for people who do not have a disability. Sadly, the same report showed this rate has remained largely unchanged over the past 10 years. And for people with intellectual/developmental disabilities (IDD), finding and retaining employment can be even more challenging.

Best Buddies,[2] an organization that matches skilled and qualified individuals with businesses seeking enthusiastic and dedicated employees, estimates up to 81% of adults (18+) with developmental disabilities do not have a paid job in the community.

Why is this?
Even in the midst of a hiring crisis, many employers are hesitant to hire people with intellectual or developmental disabilities because of myths and stereotypes including[3]:

  • Concern about negative coworker reactions to hiring a person with IDD
  • Assumptions that it will cost more to hire, train, and maintain employment for people with IDD
  • Beliefs that people with IDD will not be as productive or will be unable to develop the knowledge, skills, and attitudes necessary to complete job tasks
  • Fear of litigation associated with hiring and firing people with IDD
  • Negative stereotypes about people with IDD
  • Concern about negative customer reactions
  • Lack of economic incentives, such as tax credits, for hiring people with IDD

According to recent estimates, the United States has about ten million job openings, yet over 8.4 million unemployed individuals are still looking for work[4]. As business owners lament the challenges related to inadequate staffing and Americans are confronted with longer wait times for services, employing people with IDD is a way to help alleviate the labor shortage and increase the level of diversity, equity, and inclusion in the workplace.

People with IDD are valuable assets to our workforce and can:

  • Improve customer satisfaction results
  • Address recruitment and training costs associated with routinely filling high turnover positions
  • Demonstrate lower absenteeism and sick leave than other employees
  • Promote a more diverse and inclusive workplace and enhance employee morale
  • Foster a culture of corporate responsibility
  • Provide the organization with access to potential federal tax incentives[5] such as the Disabled Access Credit, Barrier Removal Tax Credit, and the Work Opportunity Tax Credit

What can HR managers do to attract and retain employees with IDD?

An article in the New York Law Journal[6] highlights how multinational employers are beginning to recognize the benefits of hiring people whose neurological function and structure are different and who are often described as “neurodiverse.” Companies are embracing this community of people, which includes people with IDD, by developing hiring and retention practices that support applicants and employers. Businesses could consider the following strategies which have been adapted from the article to address the needs of individuals with IDD:

  • Partner with government or nonprofit organizations that support people with IDD to ensure compliance with disability employment regulations, optimize processes for screening and selection of applicants and determine what financial and mentorship supports can be leveraged to promote successful employment of people with IDD
  • Tailor hiring practices to support candidates with IDD who may benefit from a more extended interview in a more casual environment and consider the need, up front, to provide additional training or internships
  • Educate managers and co-workers about how best to support employees with IDD
  • Create social support systems within and among other employees with IDD and develop mentorships led by employees who do not have a disability
  • Support employees’ ongoing career success by communicating key performance evaluation measures and, if necessary, develop a plan for supporting the employee to meet the performance measures
  • Set measurable organizational goals for increasing the number of employees with IDD and expanding the types of roles typically available to employees with IDD
  • Integrate policies, procedures, and processes so that “special” approaches developed for employees with IDD become the norm

Creating and maintaining disability-friendly recruitment and retention practices helps organizations fill vacancies, manage turnover, and increase diversity, equity, and inclusion in the workplace. Employers who develop and maintain disability competent cultures and support employees with IDD to be successful in the workplace will have a strategic advantage in the marketplace.

About the Author: Lorene Reagan, RN, MS is Director of Public Relations at IntellectAbility.  She has 30+ years of experience providing clinical and administrative supports for people with IDD and has held roles including state Bureau Chief for IDD services, Manager of Care Management for a Medicaid Managed Care Plan and Principal in a government human services consulting firm supporting state Medicaid programs across the nation to achieve their policy goals.

[1] US Bureau of Labor Statistics. TED: The Economics Daily. March 1, 2022.

[2] Best Buddies Jobs Program. Nd.

[3]Why Employers Don’t Hire People with Disabilities: A Survey of the Literature. CPRF, 3 Feb. 2015.

[4] Long, Heather, et al.  Why America Has 8.4 million Unemployed When There Are 10 Million Job Openings. The Washington Post, WP Company, 8 Sept. 2021.

[5]  Internal Revenue Service. Tax Benefits for Businesses Who Have Employees with Disabilities.

[6] Collins, Erika, Hartzler, Ryan.  Attracting and Retaining Neurodiverse Talent: A Global Perspective. October 29, 2021.

American Rescue Plan Act (ARPA) Funding Opportunities

The American Rescue Plan Act of 2021 is affording state agencies and providers of home and community-based supports and services a rare opportunity to implement changes that will benefit people with intellectual and developmental disabilities (IDD) for years to come.

With many avenues available to effectively utilize these funds including much-needed financial incentives for workforce support, careful attention should be given to supporting this workforce to help them recognize and reduce health risks that will lead to improved quality of life for people with IDD.

Also, timing is critical to ensure the maximum effectiveness and utilization of these funds.

IntellectAbility has tools and training that can be implemented in a matter of days that can identify and reduce adverse health outcomes, train staff on recognizing and preventing health risks such as the Fatal Five, and train supporters in person-centered approaches for people with IDD.

Our web-based Health Risk Screening Tool (HRST), our eLearn courses, and our virtual person-centered training are excellent ways to bolster the workforce and improve health, wellness, and quality of life for the people you support.

Visit to learn more or call us at 727-437-3201 and let us show you ways to make the most of your ARPA funds in your states and agencies.

When we educate clinicians, we save lives

Physicians, nurse practitioners, physicians assistants, registered nurses, and other clinicians now have an opportunity that they’ve never had before. It’s an opportunity to learn immediately usable, practical clinical information that will improve their clinical skills in one course. It teaches fundamental principles that weren’t taught in school that translate to better healthcare for millions of people. This curriculum course imparts vital skills and information to improve healthcare for anyone who has challenges in communicating verbally. This includes people with dementia, traumatic brain injury, those who are aging, children, and the group for which the course was specifically designed, people with intellectual and developmental disabilities.

The physician-created “Curriculum in IDD Healthcare” consists of 6 online modules and conveys information not previously taught to most clinicians. Numerous, real-life case studies illustrate the concepts in engaging ways that directly translate to practice. Upon successful completion, clinicians earn valuable continuing medical education credits or continuing education units, depending on their discipline. In addition, they can earn recognition by IntellectAbility as a provider who is committed to delivering healthcare to some of society’s most vulnerable citizens.

Help create a healthcare system where anyone, with or without a disability, can present to any office or hospital and receive compassionate and effective healthcare.

To learn more or to take this course, visit our Curriculum in IDD Healthcare webpage.