Care of the Patient with an Intellectual Disability

Congenital diseases- babies are born with it (The American Heritage Dictionary of the English Language, n.d.-a.).

Intellectually disabled- lack of skills for daily living and below-average intelligence or mental abilities (Cleveland Clinic, 2023).

Cognitive -the actions of thinking, including reasoning, using past experiences to form thoughts, holding all the steps of cognition in the mind simultaneously, and remembering (Merriam-Webster, n.d.).

Patient- bearing or enduring pain, difficulty, provocation, or annoyance with calmness; one who receives medical attention, care, or treatment (The American Heritage Dictionary of the English Language, n.d.-b).

Physical developmental disabilities are physical changes that occur during development inside the mother. Not many physically disabled people also have an intellectual disability (Centers for Disease Control and Prevention (CDC), n.d.).

Throughout this course, the term CNA is used for all healthcare facilities and home care staff tasked with providing patients with personal care.

Caring for a patient who has an intellectual disability takes patience. A lack of skills necessary for daily living and below-average intelligence or mental ability describes intellectual disability. People with intellectual disabilities can learn new skills, but they may learn them more slowly. In the 1800s and the 1900s, people called others with cognitive differences idiots and morons. They did not mean it as a bad thing; originally, it was just a way to describe someone. Many labels have been put on these patients, from imbecile to mentally retarded, to intellectually disabled. Sadly, some of these labels caused others to discriminate against them in various ways. In 2013 the Social Security Administration changed the Federal Registry from ‘Mentally Retarded’ to ‘Intellectually Disabled’ with the approval of most, if not all, groups that serve these patients nationwide; it was the beginning of change (Federal Register, 2013).

The DSM 5 renamed ‘Mental Retardation’ to ‘Intellectual Disability’ in 2010 after Rosa's law was passed in an effort by President Barak Obama, other politicians, and Rosa Marcellino, a nine-year-old girl with Down Syndrome who wanted it changed. Rosa's brother Nick said, "What you call people is how you treat them" (Special Olympics, n.d.-a). This is true, and since we call the people we help "patients" (“patients” in Latin is “one who suffers”), we must give our best to care for them because they need us (The American Heritage Dictionary of the English Language, n.d.-b.). While older Americans can still remember the use of the term ‘Mentally Retarded’, it is not considered acceptable anymore. Just as there are many causes of intellectual disability, there are many levels of disability from "profound (meaning severe) to mild. There are many forms of intellectual disability diseases. Some of these diseases are congenital (genetic at birth), while others get it later in life from things such as trauma. Some babies are born cognitively disabled from damage done to them during the mother's pregnancy.

Many people over the years thought one person with intellectual disability was just like another one with intellectual disability; this is not true. As you work with people with intellectual disabilities, you will see that each person is unique in how they learn, what they like, love, hate, and what they already know. A patient who is suffering from an infection, a shortage of certain minerals, or a problem with the drugs they have been given might cause them to be intellectually impaired suddenly. The CNA may be the first to see a change in new memory loss, suddenly not knowing things they knew before, or acting differently than before. CNAs are at the center of caring for these children and adults, often making a real and lasting difference for them. The trust that patients, parents, and guardians have in CNAs and other healthcare providers is huge. We can help these patients to feel respected, dignified, and included in everything we do for them. Sometimes, parents and guardians cannot do it all. We know that parents of children who are disabled usually love their children as much as anyone. CNAs help in every area of activities of daily living ADLs and many instrumental activities of daily living (IADLs). In short, the CNA is an important part of their lives. This course is designed to bring all this into focus with disease types, many causes of cognitive differences, care tips, and training stories.

According to The President's Committee for People with Intellectual Disabilities, there are around eight million people of all ages with cognitive disabilities (Administration for Community Living, 2024). That's at least three percent or three out of every 100 people. That does not include those with physical disabilities. Sometimes, a person can have both physical and intellectual disabilities.

"Approximately 6.5 million people in the United States have an intellectual disability. Approximately 1 – 3 percent of the global population has an intellectual disability—as many as 200 million people" (Special Olympics, n.d.-b).

Showing that life is harder for these patients is easy. According to the Bureau of Justice Statistics (2021), people with all disabilities are at least four times more likely to be victimized by criminals. Persons with intellectual disabilities had the highest rate of violent victimization (83.3 per 1,000) among the disability types measured by the Bureau of Justice Statistics. That's two million people who have crimes committed against them worldwide, possibly because someone knew they had intellectual disabilities. The Bureau of Labor Statistics (2024) reports that unemployment is higher and full-time employment is lower for people with intellectual disabilities. Poorer families have higher numbers of children and adults with intellectual disabilities in them. Why would that be true? It is considered to be a known fact that might be explained by those with less income having less education, less access to quality healthcare and foods, lower birth weights, and more exposure to hazardous chemicals, especially since cheaper places to live are often located near factories that have waste products. Also, since some intellectual disabilities are caused by trauma, there is a psychosocial angle to it. Not all families who have less income have people with an intellectual disability in them, so there must be more to it. Especially since adults with intellectual disabilities are less likely to work full-time if they can find a job at all. Not having the best job they are qualified for leads to poverty. So, there is a cycle here: poor folks live in poorer areas and cannot afford good healthcare, healthy foods, or a clean environment, leading to more people who have an intellectual disability, which leads to more poverty.

Some people with an intellectual disability are rarely exposed to the medical world, but many spend a large portion of their lives in and out of medical facilities. There are also patients with severe cognitive disabilities who never leave the healthcare facilities. Plus, some of the diseases that may come along with genetic or acquired intellectual disabilities are medically disabling, such as cystic fibrosis (CF) in its severest forms.

What can CNAs do?

CNAs can bond with their patients who have an intellectual disability and help to make their lives happier. You can do this by learning about them, listening, caring for them, and being trustworthy.

There are very many different types of intellectual disability. Here are several.

People may say that a person with an intellectual disability is low-, medium-, or high-functioning. What does that mean?

Low functioning might be a person with severe autism or a brain injury who is unable to speak or do anything for themselves. These are often patients in nursing homes, although many people cannot afford to care for them at nursing homes.

Medium functioning might be a person with a stroke or a less severe form of Down's Syndrome who can communicate and do many things for themselves. Some people with a medium-functioning intellectual disability do well in group living homes where they are on their own but have help when they need it.

A high-functioning person with an intellectual disability may look and act the same as anyone else, except they may not be as quick to figure things out or remember things. High-functioning people who have an intellectual disability may have a job, might get married, and have kids. Many genetic, congenital, and traumatic losses of intellectual function are invisible to the average person.

Knowledge is power. To build a patient/caregiver bond with them, you have to learn about them. Learn what helps them, such as a good cry or if they need to eat, take a nap, or take medications. What makes things worse? Do they hate to be touched if they are walking too far or cannot get their stuff down from the top shelf? What do they like? Foods, hobbies, games, writing, being read to? Each patient with an intellectual disability is unique, just as you are unique from anyone else you know.

The first step is communicating with respect, compassion, and care. Use simpler words and speak slower; do not use baby talk. Most of these patients are not hard of hearing, so speaking louder will not help if they do not understand. If they are deaf, they cannot hear no matter how loudly you speak. Make sure you are making clear, good sense. People with an intellectual disability have more literal minds. For instance, do not combine words in a confusing way, like: "Get on up out of there; do you want to get hurt?" Are we talking about getting up, on, or out? Also, nobody wants to get hurt. "Get out of that box because you could get hurt" is much better for clear understanding. Say what you mean.

Another example is "You're killing me!" meaning either they are funny or making you feel frustrated. Instead, say, "You are funny!" or if you are frustrated, try changing what you are doing to a less frustrating part of their care for a while. "You and I should start preparing your bath." Describe what you are doing; do not try to trick them into doing something that you know they will not like. Talk to them like anyone else you know; do not use jargon or use "We" when you mean" You," such as, "We need to get cleaned up now." You are probably not dirty and are not planning to get into the shower. Do not assume you know what they are thinking or interrupt when they are slow to answer. Make sure they need help before you give it.

Independence is what we are all working towards in life. Do not let them get away with bad behaviors. "No, you can't eat that cake; it's for later." If they get curious, help them to understand what and why you are doing what you are doing. If they get too curious about you and ask questions you are not prepared to answer, such as “Are you married, or do you get paid?" it is alright to say," I'm not comfortable answering that.” Take a break when needed; sometimes, being tired leads to poor communication. Be upbeat and friendly, smile a lot, and be supportive when they fail at something. It is good to say, "Try again," or That's OK; you can try again later." Give them a break if they cannot do something.

Be respectful and kind. Do not try to hide the truth or fib. They will not trust you. They are very blunt and direct communicators and may say something that you might consider rude, like "Gee, you are skinny" or "Your hair is frizzy." They are not trying to hurt your feelings; they are telling the truth as they see it. They may not have developed the ability to be careful of other people's feelings. Keep in mind: Intellectual disability is a lack of skills necessary for daily living and below-average intelligence or mental ability.

People with intellectual disabilities can learn new skills, but they may learn them more slowly. Learn about the condition they have. What will be hard for them, and what will be easier? If you notice that they have a problem with a specific task or care feature, ask them about it. Learn if you can help instead of getting frustrated or angry. Someone afraid of being locked up might be scared to go into a room alone to get something they need. Someone afraid of being bitten may cry or scream near animals. Mental health issues are more common in people with intellectual disabilities than others. They have the most trouble with attention deficit hyperactivity disorder (ADHD), depression, obsessive-compulsive disorder (OCD), and anxiety, according to Buckley et al., 2020. You may be able to help them, but your behaviors and skills are what they will see.

The term enrichment has been used in many ways; in this case, it means making the lives of those with an intellectual disability richer. How can we do that? When we have downtime, we can play games that help them learn an idea, or it is just fun! We can also help them create something, like a picture, song, or story; this depends on the mental age of your patient. If your patient is more childlike in their thinking, you can look at games for that age group. Many board and card games, as well as puzzles, have the age group they are good for printed on them. You can sing to them, draw pictures for them, and play with the toys with them. If they are young adult-like in their mental age, you can watch movies on TV, look up interesting things on the internet together, work puzzles, or suggest a good book or music relevant to them. For instance, if the person goes to classes to learn to cook, a book about a chef on a young adult level would be excellent. Use your imagination; what did you like at that age? What would you like to share with them? There are special day programs and shorter programs available in most communities, such as the YMCA and the Boys and Girls Club for people with disabilities. Studies have proven that people with intellectual disabilities have happier lives when they spend time around others (Louw et al., 2020). Remember, be safe. If there is ever any doubt in your mind about an activity, ask the person in charge if it is OK. In healthcare, it is better to get permission than hope for forgiveness. If a patient gets hurt doing something that is beyond their mental age, it will be sad for them and you.

Any environment can be unsafe. Think about what might happen outdoors at parks, playgrounds, and picnics. What might happen in crowded places, poorly lit places, and stairs without railings, or at birthday parties, malls, concerts, and zoos? How can you make these places safe for your patients if you have permission to take them there or are accompanying the family? You would always keep your eyes on the patient, remembering that you are at work and not there to be entertained. You would not let the patient run off to see something else alone. The very reason you are caring for them is that they are vulnerable, especially children who have an intellectual disability, as gullibility makes them an easy target (Modula & Sumbane, 2022). Even in the public bathroom, you would not let them be alone long. They could get lost, robbed, or taken by somebody with bad intentions. You would watch out for their hydration and put sunscreen on them. You should make sure to pack healthy snacks and plenty of water. If your patient is physically disabled, you will consider what to do when they get too tired to carry on. Use a wagon to carry supplies and to rest in. Helping to make life more enjoyable by providing safe ways to be around others and play and have fun is part of what CNAs can do.

So, any environment can be unsafe. You make the trip safer by doing your job, just like you would in their homes. Be sure you are not putting yourself in danger. Call 911 if you need help or in any situation where you or your patient are in danger. Falls: how do we prevent falls? Well, we cannot always prevent falls, but there are some things we can do to reduce the likelihood of a fall, such as keeping the floors around the patient's main areas clear of clutter. Stacks of old magazines, toys, trash, or other things a person might trip over should be put up. We want to provide a safer floor space. If the patient is in a wheelchair, lock the wheels even if the patient is just standing up to stretch. Have the patient wear shoes that are supportive if you will be taking them on unlevel ground or if they might have to walk up or downhill to get to a bathroom or events. If they need a walker or a cane for safety, be sure they use it all the time when there is room. Sometimes, bringing a wheelchair for when they get tired is also a good idea.

Here are some tips for helping people with intellectual disabilities maintain good personal hygiene:

• Establish routines: Routines can make personal hygiene activities easier and less daunting over time. Also, some types of intellectual disabilities make routine care a must. Interrupting routine daily activities by changing times and activities can affect people on the autism spectrum in negative ways.
  • Use adaptive tools: Adaptive tools, such as long-handled brushes, can help people reach certain areas of their bodies. Softer sponges and washcloths may be needed if they have sensitive skin.
  • Provide constant reminders and show them how to do what you want them to do.
  • Start early. If something takes longer than usual, you want to finish on time.
  • Seek assistance and ask for help if some area is tough for them. If needed, seek assistance from medical professionals to find the best solution for your patient's needs.
  • If they seem not to want certain clothing or shoes, ask yourself, "Is it too small? Does it have a splinter in it? Why don't they want to put this on?"
  • If it is overly cold or very warm, which clothing you help them choose will make a real difference in their comfort and hygiene. You may be able to prevent illnesses such as pneumonia and the flu, two of the biggest causes of death for adults with an intellectual disability (Landes et al., 2021).

Skin integrity means that a person's skin has no wounds. We cannot always promise someone will not get a wound, but there are ways we can make wounds less likely.Such as:

• Making sure skin is clean and dry.
• Using sunscreen to protect them from burns.
• If they already have a wound, keep it covered and protected from further damage.
• If they are in a wheelchair, make sure they have a good cushion under them. You can be an advocate for what they need.
• If they are chair- or bed-bound, make sure there is a change of position at least every two hours to keep the circulation inside the skin going.

Keep in mind that patients who have an intellectual disability may have special diet needs if they also have certain diseases. Some good examples are diabetes and CF.

With diabetes, avoiding concentrated sweets, like candies, cookies, and cakes, is important. They may also have a limited number of carbs like bread, potatoes, fruits, and noodles in a day. You have to watch out for sugar in things like drinks, protein bars, cereals, and snacks. They may need a blood sugar level check and get insulin several times a day. So, plans have to include time for these things.

People with CF require high-calorie meals with fats and protein as the main foods because of the extra mucous in their stomachs and intestines. They also need lots of water to thin out the mucous that develops in their lungs. Many will need special treatments to loosen this phlegm and mucous several times a day, so plan activities with this in mind.

All your patients will need good hydration, so consider using smaller cups and filling them more often. Use tasty drinks that they are allowed to have. Remember that good nutrition is determined by that person's disease burden. If there's a need for protein in the diet, choose lean meats such as trimmed beef, chicken, and fish. Soy is high in protein, and peanut butter is a good protein, along with other nuts in moderation. If a person needs more fiber, choose whole-grain bread, beans, whole-grain crackers, popcorn, firm vegetables, and fruits. For foods with lower fat, look for" fat-free" labels. Foods with higher fats will have more than three grams of fat per 100 calories. Good fats are vegetable fats, not animal fats. According to myplate.gov, a colorful batch of foods should be used with ¼ meat, ½ veggies and fruits, and ¼^th whole grains like bread, noodles, potatoes, or crackers. This website shows all the tools you can use to make sure you are making healthy meals and snacks for your patient.

According to Landes et al., 2021, deaths among adults with intellectual disabilities are most often caused by heart disease, choking, and pneumonia. So, a good heart-healthy diet and attention to swallowing may help your patient live longer!

Think if you were the parent of a child or adult with an intellectual disability. What would you feel? Parents of children with intellectual disabilities want the best for their kids. They believe in:

• Personalized care: Each person is different, so their care plan should be, too.
• Family involvement: Parents want to be part of their child’s learning and growth.
• Learning with others: Kids with intellectual disabilities should learn with kids without disabilities.
• Extra help: Parents often use services like therapy or community programs to support their children, even when they are grown.
• A good life: They want their kids to have a happy and fulfilling life, just like everyone else.

There are many reasons why parents might not be present for their children with intellectual disabilities. Some parents may struggle to cope with the challenges of raising a child with an intellectual disability, while others may face financial difficulties or lack of support. Additionally, parents may be unable to provide the care their child needs because of their own health issues or other family care commitments. In some cases, parents may even choose to distance themselves from their children, feeling overwhelmed, ashamed, guilty, or unable to cope with the situation; this can be hard for the caregivers who work with these patients every day. We, as healthcare workers, cannot allow ourselves to judge the parents or guardians of patients with intellectual disabilities. We cannot know how we would have behaved if we had lived in their life situations. However, some truly bad people abuse anyone, disabled or not. We can never share our opinions with anyone regarding the family's actions and behaviors unless a crime is committed. Then we MUST report it!

Regrettably, there isn't a perfect global statistic on the exact number of people with intellectual disabilities who are abused by people they know. Many cases of abuse go unreported, and the reporting agencies worldwide have different rules of what to report and to whom.

Thankfully, there is a research campaign worldwide to make disabilities rare and a joyful life more expected for people with intellectual disabilities. Goals four, eight, ten, and seventeen of the United Nations (UN) sustainable development groups (SDGs) specifically are interested in making life more inclusive and better for disabled children and adults with safer, cleaner communities, transportation, and jobs worldwide. Of course, the UN can only suggest that the countries of the world do these things, but we can all help by supporting those people and groups working to make these things happen. In the list of resources, there are some groups working to help disabled people of all types in many different ways. If you would like to be an advocate (someone who stands up for them) or a guardian (someone who manages their needs in every aspect of their lives), get involved. Or, if you just want to help make a patient's life more joyful, you can act on the information provided here in this course.

Being a CNA is an amazing position of trust. These patients may be low functioning with no ability to care for themselves and depend on you for literally everything to stay alive. Then there are higher functioning people who have intellectual disabilities who seem to be able to do nearly everything for themselves, but they may not be able to think through the things they need and do them in the correct order. They might just need someone to help them remember to eat a good meal, take pills, bathe, and dress before leaving home. Some patients were born with intellectual disabilities because of damage done while still developing inside the mother, and some from genetic changes. Some patients developed an intellectual disability after they were born because of some kind of trauma to their brains, like an accident or a long period of time with a lack of oxygen. Sometimes, a lack of oxygen can be caused by breathing air with toxic chemical fumes. Most patients with intellectual disabilities will require the basics of food and fluids, safety, and good hygiene. Some will need more work at all levels, while others need less. It is up to the CNAs to figure out what they can do for themselves and allow them to do it.

Praise successes and uplift them when they fail at a task. Protecting them may include keeping them from falling down, eating a poisonous plant, or getting a sunburn, as well as making sure no one or nothing hurts them when they are in your care. They may need protection from their own actions or from those of others. Be sure you are not putting yourself in danger. Call 911 if you need to. CNAs may have to report abuse concerns to the proper authority, and they are required to do so if they believe it is occurring. Always be safe to protect yourself, or you will be of no help to them.

Be an advocate for them and help them get healthy meals with good hydration. Be sure to make your treats safe for any diseases they might have. Learn as much as you can about them. It will help you enrich their lives. Learn to enjoy being a friend to your patients because that is how they will see you. Have fun and be creative to help them have richer lives. Communicate carefully; do not exaggerate or make your sentences too long. Talk slowly, use simple directions, but not baby talk. Start instructions at the smallest steps, such as: "Let's start with your socks." Do not assume you know what they are saying and finish their sentences for them. If they are asking questions you cannot or do not want to answer, it is ok to tell them something like, "that’s my business”. Distraction is a good way to get around stubborn refusals to bathe or to do other important things. Be a model of behavior for them. Never smoke around your patients, and don’t smoke where they can see you. Remember, parents, other relatives, staff, and workers are also watching you to see how trustworthy you are. Finally, do not lie or try to trick them into doing what you want them to do. Trust is why we have a job taking care of them in the first place.

• Administration for Community Living. (2024). The President’s Committee for People with Intellectual Disabilities (PCPID). U.S. Department of Health and Human Services. Visit Source.
• Akhtar, F., & Bokhari, S. R. A. (2023). Down Syndrome. In: StatPearls [Internet]. StatPearls Publishing. Visit Source.
• Buckley, N., Glasson, E. J., Chen, W., Epstein, A., Leonard, H., Skoss, R., Jacoby, P., Blackmore, A. M., Srinivasjois, R., Bourke, J., Sanders, R. J., & Downs, J. (2020). Prevalence estimates of mental health problems in children and adolescents with intellectual disability: A systematic review and meta-analysis. The Australian and New Zealand Journal of Psychiatry, 54(10), 970–984. Visit Source.
• Bureau of Justice Statistics. (2021). Crime Against Persons with Disabilities, 2009–2019 – Statistical Tables. Department of Justice. Visit Source.
• Bureau of Labor Statistics. (2024). PERSONS WITH A DISABILITY: LABOR FORCE CHARACTERISTICS — 2023. United States of America Department of Labor. Visit Source.
• Centers for Disease Control and Prevention (CDC). (n.d.). Developmental Disability Basics. Centers for Disease Control and Prevention. Visit Source.
• Cleveland Clinic. (2023). Intellectual Disability. Cleveland Clinic. Visit Source.
• Cleveland Clinic. (2024). Cerebral Hypoxia. Cleveland Clinic. Visit Source.
• Federal Register. (2013). Change in Terminology: “Mental Retardation” to “Intellectual Disability”. National Archives. Visit Source.
• Fourteenth Circuit Solicitor's Office​. (2023). Couple who left cerebral palsy victim locked in car guilty in child’s death. Fourteenth Circuit Solicitor's Office. Visit Source.
• Landes, S. D., Stevens, J. D., & Turk, M. A. (2021). Cause of death in adults with intellectual disability in the United States. Journal of Intellectual Disability Research, 65(1), 47–59. Visit Source.
• Law and Crime. (2023). Certified nursing assistant arrested after she allegedly ‘tricked’ disabled patients into giving her money for sex and romantic affection. Law and Crime. Visit Source.
• Louw, J. S., Kirkpatrick, B., & Leader, G. (2020). Enhancing social inclusion of young adults with intellectual disabilities: A systematic review of original empirical studies. Journal of Applied Research in Intellectual Disabilities, 33(5), 793–807. Visit Source.
• Merriam-Webster. (n.d.). Cognitive. Merriam-Webster. Visit Source.
• Modula, M. J., & Sumbane, G. O. (2022). Families' experiences on safety needs of children with intellectual disability. International Journal of Environmental Research and Public Health, 19(22), 15246. Visit Source.
• Murphy, S. J., & Werring, D. J. (2020). Stroke: causes and clinical features. Medicine (Abingdon, England : UK ed.), 48(9), 561–566. Visit Source.
• National Center on Elder Abuse. (n.d.). What is elder abuse? U.S. Department of Health and Human Services, Administration for Community Living. Visit Source.
• National Institute of Neurological Disorders. (n.d). Traumatic Brain Injury (TBI). National Institute of Neurological Disorders. Visit Source.
• Naehrig, S., Chao, C. M., & Naehrlich, L. (2017). Cystic Fibrosis. Deutsches Arzteblatt international, 114(33-34), 564–574. Visit Source.
• Penn Live. (2021). Nursing home worker avoids prison for ‘reprehensible’ abuse of mentally disabled patients. Penn Live. Visit Source.
• Protic, D. D., Aishworiya, R., Salcedo-Arellano, M. J., Tang, S. J., Milisavljevic, J., Mitrovic, F., Hagerman, R. J., & Budimirovic, D. B. (2022). Fragile X Syndrome: From Molecular Aspect to Clinical Treatment. International journal of molecular sciences, 23(4), 1935. Visit Source.
• Shenouda, J., Barrett, E., Davidow, A. L., Sidwell, K., Lescott, C., Halperin, W., Silenzio, V. M. B., & Zahorodny, W. (2023). Prevalence and disparities in the detection of autism without intellectual disability. Pediatrics, 151(2), e2022056594. Visit Source.
• Special Olympics. (n.d.-a). Rosa's Law Signed Into Law by President Obama. Brightspot. Visit Source.
• Special Olympics. (n.d.-b). What is Intellectual Disability? Brightspot. Visit Source.
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• Vorgias, D., Bynum, F. D., & Bernstein, B. (2023). Fetal Alcohol Syndrome. In: StatPearls [Internet]. StatPearls Publishing. Visit Source.

Additional Resources:

• The Arc
• The Consortium for Citizens with Disabilities
•  The National Disability Rights Network
•  American Association on Intellectual and Developmental Disabilities
•  National Association of State Directors of Special Education, Inc.