Identifying Hearing and Vision Changes

Identifying Vision and Hearing Changes in People with IDD as They Age

AS MOST OF THIS AGE, WE BEGIN TO EXPERIENCE CHANGES IN OUR VISION AND HEARING.  I  7.5 MIN  

Written by Craig Escudé, MD, FAAFP, FAADM

As most of this age, we begin to experience changes in our vision and hearing. We commonly associate aging with difficulty seeing closer and difficulty hearing. Some with intellectual and developmental disabilities may have trouble communicating these changes, and the first signs of them may appear as changes in their behavior. Let’s talk about what we might observe that could indicate a vision or hearing change in someone with an intellectual disability.

Vision

Several conditions can cause visual changes as we age:

  • Presbyopia – difficulty seeing close due to a decreased lens elasticity, which affects our ability to focus.
  • Age-related macular degeneration
  • Glaucoma
  • Cataracts
  • Diabetic retinopathy

In a person who is unable to communicate changes in their vision using words, we might observe behaviors that involve: 

  • Frequent touching or rubbing of their eyes
  • Finger flapping in front of their eyes
  • Gazing at bright lights
  • A change in their usual head positions including moving their head but not their eyes to look at things
  • Frequent shaking of their head.
  • Visual changes might also present as a person moving their head in a circular motion to find an area of better focus.
  • The person may also put their hand over one eye if they cannot see out of it clearly.
  • Frequent frowning as an attempt to strain to see better.
  • Frequent blinking may also be noted.
  • Problems such as a cataract may cause someone to avoid bright lights or to blink heavily at bright lights.

You might also see dramatic changes in a person’s behavior. They may become upset or anxious for no apparent reason or startled by noises because their vision is affected, and they can’t see what’s happening around them.

Other indications of visual loss include:

  • Not recognizing people unless spoken to because they cannot visually recognize the person.
  • Not making eye contact
  • Staring for long periods at someone as they are trying to figure out who they are.
  • Being startled when approached without being warned.
  • Favoring areas of bright lights or moving objects to areas with better lighting.
  • Having trouble making out items that are similar in color, such as a white plate on a white tablecloth.

You may also see a change in the person’s activities where they:

  • Avoid close-up work because they can no longer see it well
  • May draw tiny pictures or very large pictures
  • May seem to see bright colors better than dark ones
  • Appear to have a short attention span
  • Exhibit poor self-care skills because they can no longer see themselves clearly.
  • Seem anxious or unwilling to walk alone
  • Fall or crash into objects
  • Seem clumsy or uncoordinated.These changes may be particularly noted in areas that are poorly lit.
  • Mistake dark areas in flooring, such as a dark rug on a light-colored floor, as a hole or a step, and may be afraid to walk in that area.
Hearing

Hearing loss can come from different causes. One more common and easily treatable cause is cerumen impaction, also known as excessive ear wax. This can usually easily be removed by a clinician.

Other problems include:

  • Ear infections
  • Sensory-neural hearing loss
  • Damage to the hair cells that sense sound waves
  • A combination of different causes.

Presbycusis is age-related hearing loss due to the loss of the tiny hair cells and the interior of the ear that pick up sound waves.

In one study of hearing loss in people with and without disabilities, people with intellectual disabilities showed anywhere from three to nine times greater loss compared with other people the same age who did not have a disability. Recognizing hearing loss earlier rather than later can not only help people remain more engaged in life but can help reduce the risk of dementia. People who experience hearing loss are significantly more likely to experience cognitive decline and dementia than people who do not experience hearing loss. And correcting that hearing loss early can have a significant, positive impact on the outcome.

People who experience hearing loss as they get older may:

  1. Seem distracted, particularly in noisy areas.  
  2. Turn up the volume on the television or radio louder than usual.
  3. Not seem to understand conversations and ask people to repeat themselves.
  4. Become disengaged from others and appear less interested in activities they used to enjoy.
  5. Be startled when someone “suddenly” appears in from of them because they did not hear them come into the room.
  6. Not seem to follow requests, such as “Let’s go eat,” because they cannot hear it.
What To Do

Be aware of any changes you see in people around you who may have difficulty communicating using words. An appropriate healthcare professional should evaluate a person who exhibits visual or hearing loss signs to determine if these causes are treatable or if assistive devices, such as glasses or hearing aids, could be helpful. Early treatment can help people remain active and engaged in life, contributing to a better overall quality of life.

Unlocking Behaviors: Constipation

Unlocking Behaviors: Constipation

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

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

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

Ron is a 41-year-old man with a severe intellectual disability. He recently moved into a group home after having lived with his parents for most of his life, but because of health issues in both of his aging parents, they can no longer provide the level of support he needs. Ron uses few words but can mostly make his needs known through gesturing and limited sign language. He eats and goes to the bathroom on his own. He loves watching baseball on TV and goes to games at the local minor league stadium when he can. He gets pretty excited when the game comes on and sometimes won’t eat because of his excitement. Overall, he is adjusting well to his new living arrangement, but he seems to be missing his parents, especially when the games come on TV, as he used to watch them with his dad.

Over a period of 3 days, Ron seemed to have become less active. He began sitting more of the day, sometimes pulling his knees up to his chest when in the chair. He started eating less, as well. The “big game” was set to air in a few hours, but Ron wasn’t very interested in it. This was unusual for Ron, and the staff brought it to the nurse’s attention.

Medical Discussion

One of the most common chief complaints provided by a supporter of a person with IDD during an office visit or an emergency department visit is “He’s just not acting right.” For many clinicians, this leaves the door wide open for the reason being something simple and easily treatable to something as much more severe and potentially life-threatening. It’s helpful to know what some of the more common causes of a change in the level of alertness or activity (“not acting right”) can be. And for people with IDD, one of the most commonly seen causes is constipation.

Constipation is one of what we call the “Fatal Five,” the top preventable causes of illness and death in people with IDD.

Constipation can cause a wide range of symptoms, including:

  • Lethargy
  • Lack of interest in usual activities
  • Not wanting to eat
  • Sitting or lying with the knees brought up to the chest or curled in a ball
  • Abdominal guarding
  • Restlessness
  • Aggression without any apparent reason.

I’ve been frequently known to say, “Think about constipation first,” as it can be a common cause of an acute change in behavior.

In addition to changes in behavior, I’ve noted other changes, including:

  • Low-grade fever
  • Vomiting
  • For a person with a seizure disorder, an increase in their seizure frequency.

On multiple occasions, I’ve had patients experiencing an acute increase in seizure activity who were found to be constipated. Once the impaction was resolved, their seizure pattern when back to baseline. Because of this, our standard practice was to check for an impaction when they presented with a seizure flurry.

Constipation is one of what we call the “Fatal Five,” the top preventable causes of illness and death in people with IDD.

Why is constipation such an issue for people with IDD? 

There are several reasons, including that many medications people are more likely to take can cause anti-cholinergic effects, which can dry things up and slow things down. Slowing transit through the intestine allows for increased water absorption, which firms up the stool. Movement of large muscle groups helps stimulate bowel activity, and for some, this may be limited. Inadequate fiber and fluid intake can negatively impact bowel regularity. And some with pica behavior may ingest non-food items that can cause bowel blockage.

Behavioral Discussion

From a behavioral standpoint, when we work with individuals with limited or highly idiosyncratic communication skills who are exhibiting acute changes in behaviors, particularly ones that can be described as “odd,” “different,” or “not acting right,” we always want to know if the behavior has occurred before. For Ron, has he engaged in this type of change in positioning/posturing behavior in the past? If so, what was the outcome or resolution? Was there a clear cause and specific intervention that led to the cessation of the positioning behavior (and subsequent resolution of the underlying cause)? This is a classic example of “the best predictor of future behavior is past behavior.”  

We, as service providers, frequently hear “think medical first,” but what exactly does this mean? 

  • One way is to observe if there is an area or region of the body focused on by the acute behavior. For Ron, his behavior of bringing his knees to his chest compresses his abdomen, which can give a clue to an area that should be focused on.
  • Additionally, is there a logical reason for the behavior? For Ron, bringing his knees to his chest in a seated position, although “odd,” can relieve pressure by promoting gas relief and/or a bowel movement.
  • Another way of thinking from a medical point of view is noting the connection between avoiding food and not having bowel movements. In this scenario, I often think, “Well, something is going on between when it goes in and when it comes out. Should we start following the path from the bottom or the top?!” 

For Ron, behavioral interventions to manage future constipation could include simple communication strategies and toileting logs. If Ron does not currently have an effective means of communicating pain or discomfort, it would be beneficial to teach Ron a basic sign or gesture to assist him in communicating if he does not feel well in any scenario. Regarding toileting logs, keeping simple documentation of bowel movements can help identify potential constipation issues early to prevent more severe gastrointestinal concerns, such as fecal impaction. 

Outcome

The nurse knew that Ron had experienced bouts with constipation in the past and that he usually had similar behaviors when he did. After confirming a rectal fecal impaction, his physician recommended an enema and a short-term laxative. He also recommended a consultation with a dietician to increase the fiber content of his diet slowly and included the recommendation to concurrently increase fluid intake as his fiber intake increased. This is important as increasing fiber alone could make constipation worse. Within a few weeks, his fiber and fluid intake had increased to the recommended range, and his recurrent bouts of constipation resolved. Not surprisingly, his overall demeanor was more positive as well.

The Authors

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

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

New Reports to help you Advocate for Health Equity for People with Disabilities

New Reports to Help You Advocate for Health Equity for People with Disabilities

Published by EP Magazine | February 2023
By Craig Escudé, ME, FAAFP, FAADM

In the last year, we have seen three significant announcements relating to improving healthcare for people with disabilities, including those with intellectual and developmental disabilities (IDD).

In this article, I’ll summarize all three. That’s my part. Your part as advocates for people with IDD is to use this information to inform legislators, physician groups, hospitals, insurance plans, managed care organizations, medical schools, nursing schools, dental schools, medical licensure boards, and other healthcare entities to TAKE ACTION to incorporate training and education for students, optimize physical environments to make them more accessible, and to build a healthcare system where people with IDD can receive equitable healthcare.

Source One: The National Council on Disability

February 2022 – The Release of the National Council on Disability’s Framework for Health Equity for People with Disabilities.

The NCD’s framework “provides a roadmap for fixing systemic barriers within our healthcare system and references many examples of the well-documented health disparities and inequities that demand action for over 61 million people with disabilities.”  The framework calls for five significant changes and thirty-eight other recommended changes to foster health equity for all. The five core components include:

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

The additional thirty-eight items cover a wide range of recommendations, including making medical offices “sensory-friendly,” creating an “essential disability benefits” list of home and community-based services, mandating Medicare coverage for many services specifically beneficial to people with disabilities, including dental coverage, and mandating that health plans include a person with a disability in the peer review process for claims, among others.

Source Two: The Joint Commission

June 2022 – The Joint Commission issues Sentinel Event Alert 65: Diagnostic Overshadowing Among Groups Experiencing Health Disparities

The Joint Commission is the premier global driver of healthcare quality improvement and patient safety. They accredit organizations through an objective process that helps healthcare organizations measure, assess, and improve their performance, focusing on assisting them to deliver safe and high-quality healthcare. They issue Sentinel Event Alerts whenever a particular danger is identified that can impact health and safety. 

In June 2022, they issued a sentinel event alert on diagnostic overshadowing. Diagnostic overshadowing is a term used to describe a situation where a particular sign or symptom a person is exhibiting is attributed to the person’s IDD diagnosis rather than looking for a potentially treatable underlying cause. This type of misdiagnosis can have a significant negative impact on the person. Imagine if someone who does not use words to communicate is experiencing pain from a dental abscess and can only express that pain by hitting herself on the cheek over and over. To the untrained eye, this behavior might be attributed to the intellectual disability rather than looking for an underlying cause. The person might suffer for weeks, months, or even years without ever receiving a proper diagnosis causing significant physical and emotional trauma to the person.

Source Three: The World Health Organization

December 2022 – The World Health Organization (WHO) releases its Global Report on Health Equity for Persons with Disabilities.

The WHO estimates that 1.3 billion people experience a significant disability worldwide. This estimate includes those with IDD. Their 296-page report calls for change to the overall healthcare system to promote health equity for people with disabilities. 

One of the points is that achieving health equity for people with disabilities benefits society as a whole, including older people, people who experience temporary limitations, and people living with chronic conditions. There are calls for “transformative disability conscious medical education, training and practice,” which, instead of focusing on “curing the abnormal,” would present disability as one of many diversity factors around which a range of structural barriers and systemic disadvantages influence health outcomes.” This comprehensive report contains numerous recommendations to achieve health equity for people with IDD. 

Use these reports in your advocacy to work towards improving health equity for people with disabilities. 

Think of the connections you have developed with people in positions to make changes. Print these out and deliver them to clinicians you visit. Email these links to legislators and licensing boards. Call your legislators and inquire if they are aware of these reports. 

As the collective voice of people with IDD, advocates, self-advocates, families, and health professionals grows, 
it will become a driving force for change.

Matthew’s Memo: An Advocacy Success Story

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

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

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

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

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

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

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

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

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

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