You are not currently logged in. Please log in to CEUfast to enable the course progress and auto resume features.

Back

Care of the Patient with Intellectual Disability (Mental Retardation)

4.00 Contact Hours:
  • 0% complete
A score of 80% correct answers on a test is required to successfully complete any course and attain a certificate of completion.
Author:    Sue Ragsdale (MSN, APRN, ACNS-BC)

Purpose/Goals

This course was created to help nursing assistants understand the special healthcare needs of people with intellectual disabilities and develop strategies to meet those needs.

Objectives

After completing this course, the learner will be able to

  1. Define intellectual disability.
  2. List common disorders associated with intellectual disabilities and major features of each.
  3. Review laws that protect the civil rights of people with intellectual disability.
  4. Outline special healthcare needs for people with intellectual disability.
  5. Describe the role of the nursing assistant in caring for a person who is intellectually disabled.

What is Intellectual Disability (ID)?

Intelligence is a general mental capability. It includes thinking, reasoning, planning, and problem solving. It also includes learning, applying new information, and being able to remember what was learned. Having intelligence allows a person to adapt to what is going on around them.

Intellectual disability (ID) used to be considered a condition related to low intelligence only. Now days, it is defined as having low intelligence PLUS trouble functioning in the environment (American Association on Intellectual and Developmental Disabilities, 2015). For example, people with ID may have trouble communicating. They may also have trouble socializing. Another area they may struggle with is holding down a job. They may even have trouble making decisions. If the condition is severe enough, it may even affect the ability to take care of basic needs like bathing, dressing, and eating. A person is considered intellectually disabled if he or she has both conditions of low intelligence and trouble adapting. If only one or the other is present, the person is not considered intellectually disabled. 

To be considered intellectually disabled, low intelligence and functioning problems have to be present in childhood, or before the 18th birthday.  In other words, if a person has average or above average intelligence in childhood but then develops trouble with thinking or memory later in life, this is not intellectual disability. This would be considered something different, such as dementia.

IQ Testing

The main test to measure human intelligence is the intelligence quotient (IQ test).  IQ test scores between 85 and 115 are considered average. People with IQ scores less than 70 are said to have low intelligence (American Psychological Association).

IQ tests measure crystallized intelligence and fluid intelligence (American Psychological Association). Crystallized intelligence is related to what a person has learned through education and experience. Fluid intelligence is related to what a person can figure out. Problem solving often requires a person to draw on fluid intelligence. This is especially true when facing a problem that is different than any problem faced before. There are two parts of fluid intelligence. The first part is working memory. This is the ability to keep needed information in mind. The second part is processing. This is the ability to keep working through and making sense of what is unfolding.

Problem Solving

People with ID struggle to solve problems. This alone may be the reason that they cannot live without assistance. It is important to understand how problem-solving skills are developed when considering intelligence. It is also important to realize that there are four levels of ID. These include mild, moderate, severe, and profound ID. Problem-solving abilities are different for each level of disability (Harris, 2010).

In normal development, infants start to problem-solve around 18 months old using trial and error. For example, a two year old may learn that an object out of reach could be moved closer using a stick. They learn that this works because they tried it and succeeded. People with profound ID may only be able to use trial and error for problem-solving because they can’t advance beyond this level.

Preschool children, on the other hand, are able to keep remembered images of personal experience in mind. This is the first signs of working memory. These memories can help solve problems. For example, a preschool child looking for a missing ball might remember that he found it under the couch yesterday. Based on this memory, the child might look under the couch to find the ball. People with severe ID might never advance past this level of problem-solving. For this reason, they would struggle when faced with a problem that they have no prior experience with, because there is no memory to recall.

In the child with average or above average intelligence, development continues as the child learns how to perform addition and subtraction problems.  At this level, the child also learns how to return to tasks after being interrupted. For example, a child could return to the place in a book where he left off before the phone rang and he talked to grandma. Being able to do this requires mental skill that assists problem-solving. A person with moderate ID may be able to develop to this level, but not beyond.

Higher levels of problem-solving require a person to be able to use abstract reasoning. Most people with mild ID can’t do this. For example, consider the task of explaining the proverb, “A bird in the hand is better than two in the bush”. The abstract meaning might be, “Be happy with what you have instead of longing for what you don’t”. But a person with mild ID thinks only in concrete terms. So, he or she may struggle with the suggestion that one could be greater than two.

Rate of Occurance

ID affects 1-3% of the population (Medline Plus)  There are many causes, but doctors only find a specific reason in about 25% of cases (NCBI, 2015). Sometimes it is related to an infection present at birth or occurring shortly after. It is critical for a baby to get an adequate amount of oxygen before, during, or shortly after birth. If this does not happen, brain damage can occur that affects intelligence. ID can also be related to a chromosomal problem, like in the case of Down syndrome. Another reason for the condition is either a metabolism problem or malnutrition. A woman who drinks alcohol, takes drugs, or gets a serious infection like Rubella may also deliver a baby with an intellectual disability. ID can result from trauma before or after birth that cause damage to the brain, too.

Intellectual Disability vs. Mental Retardation

In the past, people with ID were referred to as being “mentally retarded”. This became unpopular because it was considered insulting (American Association on Intellectual and Developmental Disabilities, 2015). That is because people would sometimes use the term just to make fun of someone who did something that was considered not very smart.

Different terms have been used in the past to describe the condition of ID. These include terms that aren’t particularly insulting like intellectual developmental disorder and learning disabled. Idiot, feebleminded, moron, or imbecile are other terms that have also been used. Like retarded, these became negative words used to insult and make fun of someone thought to be acting stupid.

A lot of international effort has been spent to get rid of offensive words used to describe people with lower intelligence. There is also a desire for everyone to adopt and use the same term. This would eliminate any confusion when discussing the condition. ID is the term being adopted all around the world. Healthcare workers in the United States should be using this new language.

There are several laws and programs in place to help people with ID reach their full potential. Some of the laws have not yet been updated and still call the condition mental retardation. Until all references have been changed from “mental retardation” to “intellectual disability”, it is important to remember that these two terms have the very same definition. Being diagnosed with either one makes a person eligible for state and federal laws and programs available to protect and help them (American Association on Intellectual and Developmental Disabilities, 2015).

Diagnosis

ID may be suspected in a child for many different reasons. At birth, a variety of blood tests and imaging tests may be ordered by the healthcare provider if a baby has physical abnormalities that suggest a genetic disorder. That is because genetic disorders often affect intelligence. Early blood work and imaging tests can identify if there is something abnormal about the way the brain and nervous system looks or works, even in newborns.   

In the preschool years, developmental tests may be run if the child seems to be slow in learning how to sit up, crawl, walk, talk, play, or do other things expected of children the same age. Usually hearing and vision tests will be performed on these children, too. This is done to make sure that a problem with seeing or hearing isn’t keeping the child from interacting and engaging fully.

Once the child starts school, they may be identified as having trouble learning and keeping up with the other kids. This could be the first trigger that leads to intelligence testing. So, while most cases of ID are recognized before age two, some cases aren’t realized until the child becomes school age.

Doctors determine that a child has a low intelligence level after gathering information from different sources. The first source is an interview with the parents to learn how the child behaves and interacts. The second source is to meet with the child and observe firsthand how the child behaves and interacts. The final source is to put the child through some tests to measure IQ and see how the child adapts in a test environment.

Intelligence is rooted in brain function. The human brain matures throughout a person’s lifetime. But there are specific times in childhood when the changes going on in the brain are very significant. These events correlate with changes in development and behavior at those same points in time. According to national expert and psychiatrist, James Harris (2010):

Connections between parts of the brain and the spinal cord are located in white matter. Brain cells are located in gray matter. White matter increases significantly in the first two years of life. This correlates with motor development like learning to crawl and walk. As the child begins to learn, there is an overproduction in gray matter. Then, during adolescence, the gray matter is reorganized in different parts of the brain. At the age of eleven or twelve, gray matter in the frontal lobe peaks. This part of the brain is associated with being able to plan, anticipate changes, and regulate mood and behavior. At the age of sixteen, gray matter peaks in the temporal lobe of the brain. This part of the brain is associated with language and memory (adapted from p. 160-161).

The brains of people with ID don’t progress through these stages as predicted. Some experts believe that a person with ID reaches a mental peak and doesn’t move past it. As a result, the person may not be able to do the things associated with a later development phase, such as controlling impulses. The person with ID, for example, may have mood swings if the frontal lobe development is inadequate. Communication problems and memory impairments can be better understood with the knowledge that the brain development is altered.

The signs and symptoms of ID are all behavioral. The majority of people with ID do not look different from those without it. There are some genetic syndromes, however, that have an intellectual disability component. People with these disorders do look different from the general population. Down syndrome and Fragile X syndrome are examples of this.

Disability not a Disease

ID is a disability and not a disease that can be cured.  Children and adults with ID may display all or some of the following features:

  • Delayed speech development
  • Difficulty learning new things, especially if it is complex
  • Trouble remembering things
  • Difficulty learning social rules about how to behave in public and in relationships
  • Trouble with problem-solving
  • Delay in developing self-help skills
  • Delay in developing self-care skills
  • Inappropriately acting on impulses (for example, they may reach out and touch someone in front of them in a grocery store line just because it crossed their mind to do it)

Individuals with ID face challenges throughout life. With the right support and interventions, most can succeed in school and in their adult life. Some people with ID might not be able to live without supervision, however. Having a low intelligence could put a person at risk for harm or injury. This is because they may not make safe choices. They also might not pick up on cues in the environment that would warn a person without disability of danger.

Case Study

Sarah is a 34-year-old female with an intellectual disability since birth. Her IQ test score is 60. She lives with her mother in the home she grew up in. Four days a week, Sarah rides the city bus to a small grocery store where she bags groceries for minimum wage.  The bus driver, Mary, reminds Sarah to get off at the correct bus stop and always asks Sarah how her day was.

During Mary’s vacation, a different driver was assigned to the bus route. Sarah seemed distressed and confused that Mary was not present on her drive to work. Sarah neglected to get off at the stop in front of the grocery store. She looked out of the window but did not recognize the streets that went by because she usually did not ride that part of the bus route. She began to weep.

A male stranger on the bus approached Sarah and offered to help. He instructed Sarah to get off the bus at the next stop. After the bus drove off, the stranger overtook Sarah and dragged her into a nearby wooded area. He raped and robbed Sarah, then left.

Category of ID

According to The American Psychiatric Association (2013), ID can be defined as mild, moderate, severe, or profound. The categories depend on two things. The first is IQ scores. The second is the ability to function in everyday activities. See table 1 below to understand the features of each of the four categories.

95% of people with ID have a mild or moderate type (American Association on Intellectual and Developmental Disabilities). Fortunately, people in these categories have the potential to live and function within families and communities.  It is critical for readers to know that this table is meant only as a guide. It is not an exact measure of ability and needs. Everyone has their own areas of ability and areas of difficulty. Other factors contribute to how much a person with ID can personally achieve. One factor is the individual personality. Another factor is the ability to adapt. Whether or not the person with ID has other disabilities can also affect how far he or she will go. The amount of social support available to them is extremely important.

Mild ID

This category accounts for 85% of all ID cases.vbPeople with mild ID have IQ test scores of 50-69. They usually do not look different than people without ID. The condition may not be obvious until the child starts school and has trouble keeping up.  People with mild ID learn and develop more slowly that others of the same age. Though they may struggle to keep up in school, they can usually advance to an elementary level. They may have difficulty communicating or socializing. They are capable of having important relationships and may even marry and raise children. They are able to follow basic social rules of behavior but may behave awkwardly. They are able to work in jobs that don’t require critical thinking or social skills.

People with mild ID can usually function adequately in a routine environment. They may, however, feel overwhelmed with demands placed on them in unfamiliar situations. They may need help with major life decisions such as managing finances. Additional time and instruction may be needed to learn complex tasks like taking several medications correctly.

Case Study

John is a 26 year old man with an IQ test score of 64. When he was in school, he was placed in a special education program and graduated at age 19. He works at a small community hospital transporting patients back and for the between their inpatient room and the radiology department. He lives in an apartment four blocks away from the hospital. He either walks or rides his bicycle to work. He married Jane when he was 21 years old. Jane has an IQ test score of 85 and works at the public library. She drives a car and manages the bills and shopping. John helps with the cooking and cleaning.

John developed pneumonia and had to be hospitalized for three days. At discharge, the nurse provided home care instructions when Jane was not present in the room. When John returned home, he could not remember most of it.

Moderate ID

This category accounts for 10% of all cases of ID. People with moderate ID have IQ test scores of 35-49. They might have unusual physical features such as lower ear placement or a different shaped head and face. The condition is usually recognized before the child starts school. Children with moderate ID usually learn to sit up, crawl, walk, and talk later than other children. They require special education approaches to reach their potential within their level of ability. They can be taught simple health and safety skills like bathing every day and locking the doors. They can make their own choices about what they want to do, eat, drink, or wear. They can learn to travel alone to familiar places, such as riding the bus to a day treatment center. People with moderate IQ may act on impulses to say or do something that isn’t socially acceptable. For example, they might ask someone they just met a very personal question.

People with moderate ID usually need a supportive work environment. They may also need supervised housing. 

Case Study

Paul is a 21 year old man with an IQ test score of 45. His lives with his parents and younger brother. Paul went to school at a residential treatment facility 15 miles from his home. He now works Monday through Friday at the same center. His job is to wrap plastic utensils for restaurants and hospitals. He earns less than minimum wage, but receives state and federal subsidies to cover his living expenses and healthcare costs. The treatment facility sends a van to pick Paul up at his home every day at 8:00 and returns him home at 4:30.

Severe ID

This category accounts for 3-4% of all ID cases. People with severe ID have IQ test scores of 20-34. The condition is recognized prior to age two. The child is usually very late to learn to walk or get potty trained. They may have little to no talking skills. Despite this, they often have the ability to understand speech. People with severe ID may communicate with gestures, facial expressions, and body language.  They may be taught daily routines and repetitive activities such as emptying trash cans or folding napkins. They may be trained in simple self-care such as combing hair and brushing teeth. They need to be supervised and directed for social activities. This is because of a high possibility they may say or do something inappropriate such as publicly removing their clothes because they are feeling hot.

People with severe ID cannot live alone because safety supervision and financial support is needed.

Case Study

Carol is a 12 year old girl with cerebral palsy. She has an IQ test score of 30. She lives in a residential treatment center. She receives physical therapy daily and is learning basic skills for self-care. She doesn’t speak, but she smiles when spoken to. She has learned to participate in feeding herself if the meal tray is set up and the special-needs spoon is placed in her hand. She can gesture to communicate if she wants something. She loves music, cats, and hugs. Her parents and older sister live 30 miles away. Carol’s father picks her up every other Friday to take her home for the weekend. Carol gets excited and makes grunting noises when she sees him.

Profound ID

This category accounts for 1-2% of all ID cases. People with profound ID have IQ test scores less than 20. The condition is recognized early in infancy. ID this severe is usually accompanied with physical disabilities. This might include things like vision and hearing problems.  People with profound ID need help with all daily living tasks such as eating, bathing, getting dressed, and using the bathroom. They may be unable to communicate with people and the environment.

People with profound ID need close and constant supervision. Usually this means 24 hour care.

Case Study

Judy is a 30 year old female with profound ID since birth. She receives 24 hour care at a state nursing facility 40 miles from her family’s home.  She has not been able to participate in IQ testing, but her IQ is estimated to be below 20. She is blind, but responds to sound. She is incontinent of urine and stool. Judy is fed through a gastric feeding tube. She also has a suprapubic urinary catheter.  Twice a day, she is transferred from the bed to a reclining chair. She is brought to the communal dining area for dinner each night. She doesn’t seem to respond to people or the environment even when in a crowded room. The nursing home staff noticed that Judy sometimes turns her head in the direction of loud music. Her mother visits once a month, but Judy does not give any indication that she recognizes her or even realizes that she is present.

What Causes ID?

To understand the genetic causes of ID, a person must first understand what genes are. In every cell in the human body, there is a nucleus where genetic material is stored (National Institute of Health).  Genes carry the codes responsible for all of a person’s inherited traits like what color the eyes are or how tall he or she will grow to be. Genes are grouped along rod-like structures called chromosomes. There are 23 pairs of chromosomes, for a total of 46 chromosomes. Each person inherits half of their chromosomes from their mother, and the other half from their father. The following sections define the most common disorders associated with ID.  The majority of disorders on the list are genetic.

This summary doesn’t include a complete list of all causes for intellectual deficits. It’s important to remember that in 75% of the cases, the specific cause of ID is unknown.

Fragile X Syndrome

Fragile X syndrome is the most common inherited cause of ID. It is a birth defect that affects a gene on the X chromosome. The gene normally makes a protein that is important for creating and maintaining connections between cells in the brain and nervous system http://www.specialolympics.org/Sections/Who_We_Are/FragileX.aspx).

Females have two X chromosomes, but males only have one. The second X chromosome that is healthy in females can still make some protein. Males, however, can’t compensate for the lost protein. This difference explains why girls tend to have a milder case of Fragile X syndrome than boys. In females, the intellectual deficit is usually mild. In males, it ranges from mild to severe.

Fragile X syndrome affects a person’s behavior and ability to learn. It can also affect communication skills. Some people with Fragile X syndrome may have trouble speaking clearly. Others may stutter or leave out parts of words. They may also have problems understanding other people’s social cues. In other words, they don’t pick up on things like tone of voice, sarcasm, or body language.

Sometimes, people with Fragile X syndrome are afraid or anxious in new situation. They may also be shy. Sometimes they have trouble paying attention. They may also show signs of aggression. People with Fragile X syndrome have a different physical appearance. The face may be narrow with a large prominent forehead. The head and ears may be larger than expected. The joints may also be more flexible than is usual. They often have flat feet, too.

Many people with Fragile X syndrome are bothered by certain types of sight, sound, or touch. These could include such things as bright lights, loud noises, or the way certain clothing feels on their bodies. These sensory issues might cause them to act out disruptive behaviors.  

Down Syndrome

Down syndrome is sometimes called trisomy 21. It occurs when a person has a full or partial extra copy of chromosome 21 (National Down Syndrome Society). This extra chromosome causes the change in appearance that is typical. People with Down syndrome look more like each other than their own family members. The common physical features include being short with a lower muscle tone. They also have narrow, slanted eyes and a flat nose. Their mouth is smaller than usual and their tongue is long and protruding. Their fingers are usually shorter and curve inward, too. There is just one single deep crease in the palm of the hand. This is different from other people who have multiple palm creases.

Down syndrome occurs in about 1 of every 700 births. The true incidence is difficult to determine. Prenatal care in the United States includes screening for Down syndrome. Some women elect to abort the pregnancy when informed that the unborn child has the disorder.  

Even though people with Down syndrome might look and act similar, they have different abilities.  The level of ID is usually mild or moderate, but it can vary. There have been cases of people with Down syndrome having only borderline ID. Some have successfully completed higher education programs. Others have had successful acting careers. Some even marry.

People with Down syndrome usually require extra time to learn new things. They may be late to sit up, crawl, walk, and talk. Down syndrome can delay mental and social development. Some children with Down syndrome display impulsive behaviors. Others may demonstrate poor judgment or short attention spans. Behavioral training can be helpful in dealing with these issues.  

Autism Spectrum Disorder

Autism Spectrum Disorder (ASD) includes a wide range of symptoms and levels of impairment. Different people with autism can have different symptoms, which is why it's known as a "spectrum" disorder.

Autism affects the way the brain and nervous system looks and works (Howlin, 2015). People with autism spectrum disorder have trouble communicating thoughts and emotions. It also impairs the ability to socially interact with other people. There is often a behavioral component, too. This can include repeating the same activity or word over and over. Sometimes a person with autism may develop an obsessive interest in a single object. For example, child with autism might spend hours lining up toy cars in a straight line instead of playing with them. They may resist trying new thing because it makes them feel afraid or anxious.

Symptoms of autism appear in early development. Most of the time, symptoms are present by age two. The exact cause isn’t known. Scientist think genes and the environment play a role in the disorder. Some studies done on twins have proven that if one identical twin has autism, the other twin has a 90% chance of also having it (National Institute of Neurological Disorders and Stroke). This provides evidence that there is a genetic component. But if genetics was the only factor, then 100% of the twin siblings would be autistic. Since that isn’t the case, other things must contribute to whether a person has the disorder or not. Many studies are taking place to see if air, water, and food sources play a role in autism.

American children receive several vaccines in the first two years of their life. Two years old is about the time when autistic symptoms are first recognized. Some parents believe that vaccines cause autism because of the common timeframe between taking the vaccines and showing signs of autism. Health experts don’t agree. There isn’t any firm evidence to suggest a true link. The ingredient in vaccines that parents believe leads to autism is called thimerosal. It was removed from vaccines in 2001 (U.S. Food and Drug Administration). Despite this, the rate of children diagnosed with autism has continued to rise. If the two were really linked, the rates would have gone down instead.

Children with ASD do not follow the usual development patterns. Parents may notice this when comparing the child to other children of the same age. In some cases, children may avoid eye contact. They may be hard to engage in playful activity. They may not show any joy over toys or activities. When other people show anger, distress, or affection, a child with autism may respond in a way that isn’t typical. It is believed that they don’t recognize and understand what is being communicated because they don’t have the ability to pay attention to social cues like tone of voice or facial expressions.

As mentioned before, some children with ASD develop normally for a period of time and then start to lose interest in others and become silent, withdrawn or unable to interpret social signals. This is extremely distressing for parents.

There are different levels of ID associated with ASD. Some people may not have a low IQ at all. Albert Einstein is an example. He is one of the most famous people in history believed to have had Asperger’s syndrome. This syndrome is a high functioning form of autism. Einstein was a gifted physicist internationally known for his theory of relativity. It is reported that he did not talk until he was almost three. He dropped out of high school. He had to take special exams to get into college. Einstein flunked out of college on his first attempt. Despite all of this, his IQ was reported to be greater than 160 (Muir, 2003).

Cerebral Palsy

Cerebral palsy is a term used to describe a group of chronic conditions affecting body movement and muscle coordination (United Cerebral Palsy Foundation). It is one of the most common causes of childhood disability. Cerebral palsy does not directly affect muscles or nerves. Instead, it results from damage to the parts of the brain that control movement and posture. Sometimes it is related to a shortage to the brain’s oxygen supply for a prolonged period of time. In most cases, the cause is unknown. The damage usually occurs before, during, or shortly after birth.

People with cerebral palsy have involuntary movements because their muscle tone changes rapidly from floppy to tense, in a way they cannot control. Speech can be hard to understand because they have difficulty controlling the tongue, breathing and vocal cords. Hearing and vision problems are also common. Problems with controlling the tongue can cause eating and drinking difficulties.

Some people with cerebral palsy may have difficulty distinguishing and comparing shapes. This is related to visual or spatial perception, which is about a person's ability to interpret what they have seen and not a problem with their eyesight. People with cerebral palsy may also have some form of ID which can be mild, moderate or severe. There may be specific learning problems linked with a particular activity. This could include such things as reading, drawing or arithmetic because a specific area of the brain is affected. It is important to remember, however, that even someone severely physically affected by cerebral palsy may have average or above average intelligence.

Apert Syndrome

Apert syndrome is a genetic birth defect. It is characterized by the premature fusion of certain bones in the skull, hands, and feet (National Institute of Health). People with Apert Syndrome have a characteristic look. The head is unable to grow normally. This leads to a sunken appearance in the middle of the face. The eyes appear bulging and wide-set. The nose usually has a beaked look. The upper jaw is underdeveloped. This leads to crowded teeth and other dental problems. Fingers and toes have a webbed appearance because the digits are fused together. Many children with the disorder are also born with cleft palates. This is an abnormal opening in the roof of the mouth. Multiple surgeries to the face, head, hands, and feet are often required to repair defects.

Early fusion of skull bones affects brain development. This can have a negative impact on the development of intelligence. People with Apert syndrome have intelligence levels ranging from normal to mildly or moderately disabled.

The physical deformities associated with Apert syndrome can have other effects on health, too. Shallow eye sockets may cause vision problems.  Hearing problems are also common. People with Apert Syndrome often have a lower self-esteem associated with feeling unattractive and treated with rejection.

Fetal Alcohol Spectrum Disorders

Fetal alcohol Spectrum Disorders is a cluster of physical and mental problems that develop in an unborn child when the mother consumes large amounts of alcohol during the pregnancy (Medline Plus). In the United States, it is one of the leading causes of birth defects and is thought to be the most common cause of preventable cause of ID.

The head and facial features of children with fetal alcohol spectrum disorder are slightly different when compared to children without it. This includes a smaller skull. The eyes are also small with drooping lids. The nose is usually turned upward. Cheeks appear flattened. The jaw line is smaller than usual with a thin upper lip.

Babies born with fetal alcohol spectrum disorder usually have a low birth weight. They are late to learn how to roll over, crawl, sit up, walk, and talk. They may also be late in learning to grasp objects or transfer something from one hand to the other.

Behavioral issues often include being hyperactive. Children with fetal alcohol spectrum disorder may get distracted easily, which affects the ability to concentrate and learn. Often they have trouble controlling impulses. They may be easily upset, too. Memory problems are common and this can lead to problems with learning. The ID associated with fetal alcohol spectrum disorder ranges from mild to severe.  

Prader-Willi Syndrome

Prader-Willi syndrome is a birth defect affecting chromosome 15 (Association of Retarded Children). One of the things linked to chromosome 15 is the pigmentation of skin, hair, and eyes. As a result, many people with Prader-Willi syndrome have fair skin and light colored hair.

People with Prader-Willi syndrome have other distinctive physical features, too. These include a narrow forehead. The eyes are usually almond-shaped. The mouth usually has a triangular appearance. Those affected are short in height, with small hands and feet. The genitals are underdeveloped. Puberty is typically delayed or incomplete. Males and females with Prader-Willi syndrome are typically infertile, so they are unable to have children.

The disorder is characterized by weak muscle tone. They will usually have feeding problems in infancy because the muscle problem impairs the ability to suck. Then, beginning in childhood, they develop an obsession with food and eating that can lead to being overweight.

Behavioral problems include stubbornness. People with Prader-Willi syndrome will commonly throw temper tantrums when frustrated. They are highly prone to mood swings. Often, they will display fear or anxiety when faced with new challenges.

The majority of people with Prader-Willi syndrome have a mild to moderate intellectual deficit. Sometimes, however, the intelligence level is low normal. They often struggle to keep up in school. In some cases, they display strength in reading and long-term memory.

How has the Treatment and Living Conditions for People with ID Changed Over the Years?

In his book on intellectual disabilities, Harris (2010) summarizes how people with ID were treated at different times in history. This information helps healthcare providers understand how the past shaped current thinking and treatment.

According to Harris, disabled children were considered to have been cursed by a displeased god in ancient Greek and Roman times. Parents were sometimes so fearful that they killed the damaged baby to prevent further harm to the rest of the family. Christians were later encouraged by the apostles to comfort the feeble and be kind to those less fortunate. This led to a more charitable approach and disabled babies were allowed to live. By the middle ages, people with ID were considered harmless and were usually cared for by family members, neighbors and church groups. From the 14th to 16th century, there was a growing understanding that disabilities resulted from natural, not supernatural causes. From the 17th to 19th century, there were efforts to use this information to try and prevent or treat disability.  

In the early 20th century, care of people with ID in the United States usually included removing them from families. They were then placed in residential programs designed to address their “special needs”. These programs were funded by the state and federal government. Unfortunately, most of these residential institutions were built in remote areas separated from the larger community. The care focused on meeting basic life needs such as eating, bathing, and dressing. Little or no emphasis was placed on providing a stimulating environment. Under these conditions, people with ID did not grow to their full potential.  

Abuses

Sadly, before the 1970s, most people with ID spent their entire life in government institutions like the ones described. They had very little contact with people who were not disabled. Sometimes the caregiver staff treated them unkindly. If this occurred, it could go on for a long time because the person with ID didn’t have the skills needed to defend themselves from abuse. They also didn’t have anyone to report issues to.

Little regard was extended to those with ID. It was common in the United States for surgical procedures to be forced on them to prevent child bearing. In fact, the Supreme Court endorsed this practice as constitutional in the 1930s (Wehmeyer, 2015, p. 170). It remained popular in some states until the 1970s. The thought was that disabled people would pass genetic flaws on to their children. Healthcare leaders and government official believed it was in the interest of the greater good to remove that possibility. It was also argued that this approach saved the government a lot of money associated with having to provide care for more babies with disabilities.

Other abuses took place, too. Researchers sometimes treated institutionalized children and adults with ID as if they were lab rats without human rights. In the 1950s, polio vaccines were trialed on “retarded children” at a California State Home (Wehmeyer, 2015, p. 196). Measures weren’t put in place to protect unvaccinated children exposed to the virus during the experiment. Some of those unprotected children got very sick.

What was missing in the past was a perspective that people with ID had any value and could be productive. The general public didn’t even believe that people with ID could learn. No effort, therefore, was spent to teach them. From time to time, someone would come along and try to promote better treatment. Early attempts didn’t do much to change the model of care, though. Without followers, the person trying to lead change couldn’t make change happen. Institutionalization remained popular in America until the 1970s.

Another thing that was missing at this time in history was laws to protect this vulnerable population of people. Vulnerability means being in need of special care, support, or protection because of the risk for abuse. A person is vulnerable if that risk is high and their personal ability to protect themselves is low. The case of using children with ID in risky experiments is a good example of how they were “vulnerable”. This shocking research study wasn’t an isolated case either. Children and adults with ID were also starved and exposed to radiation (Wehmeyer, 2015, p. 197). This was done so that researchers could better understand what harm resulted from these problems. They wanted to use what they learned to figure out ways to protect and treat other people who they felt really mattered. It seemed logical to researchers that they had found a good way for people without any human value to serve humanity.

Institutionalization was the treatment standard for people with mental illness, too. There was often an overlap in the two groups. A large percentage of individuals with mental illness also had ID. The combination of having both problems increased their vulnerability.

Change

Sadly, before the 1970s, most people with ID spent their entire life in government institutions like the ones described. They had very little contact with people who were not disabled. Sometimes the caregiver staff treated them unkindly. If this occurred, it could go on for a long time because the person with ID didn’t have the skills needed to defend themselves from abuse. They also didn’t have anyone to report issues to.

Little regard was extended to those with ID. It was common in the United States for surgical procedures to be forced on them to prevent child bearing. In fact, the Supreme Court endorsed this practice as constitutional in the 1930s (Wehmeyer, 2015, p. 170). It remained popular in some states until the 1970s. The thought was that disabled people would pass genetic flaws on to their children. Healthcare leaders and government official believed it was in the interest of the greater good to remove that possibility. It was also argued that this approach saved the government a lot of money associated with having to provide care for more babies with disabilities.

Other abuses took place, too. Researchers sometimes treated institutionalized children and adults with ID as if they were lab rats without human rights. In the 1950s, polio vaccines were trialed on “retarded children” at a California State Home (Wehmeyer, 2015, p. 196). Measures weren’t put in place to protect unvaccinated children exposed to the virus during the experiment. Some of those unprotected children got very sick.

What was missing in the past was a perspective that people with ID had any value and could be productive. The general public didn’t even believe that people with ID could learn. No effort, therefore, was spent to teach them. From time to time, someone would come along and try to promote better treatment. Early attempts didn’t do much to change the model of care, though. Without followers, the person trying to lead change couldn’t make change happen. Institutionalization remained popular in America until the 1970s.

Another thing that was missing at this time in history was laws to protect this vulnerable population of people. Vulnerability means being in need of special care, support, or protection because of the risk for abuse. A person is vulnerable if that risk is high and their personal ability to protect themselves is low. The case of using children with ID in risky experiments is a good example of how they were “vulnerable”. This shocking research study wasn’t an isolated case either. Children and adults with ID were also starved and exposed to radiation (Wehmeyer, 2015, p. 197). This was done so that researchers could better understand what harm resulted from these problems. They wanted to use what they learned to figure out ways to protect and treat other people who they felt really mattered. It seemed logical to researchers that they had found a good way for people without any human value to serve humanity.

Institutionalization was the treatment standard for people with mental illness, too. There was often an overlap in the two groups. A large percentage of individuals with mental illness also had ID. The combination of having both problems increased their vulnerability.

Critical Legislation (Harris, 2010, pg. 21-25)

1971 – Pennsylvania Association for Retarded Children vs. Commonwealth of Pennsylvania

  • Before 1971, a Pennsylvania law allowed public schools to deny services to children with a mental age less than five years old. The Pennsylvania Association for Retarded Children (ARC) sued the state to overturn this law.
  • In the settlement, Pennsylvania agreed to provide free public education for children with ID. This was a landmark court case that started the entire special education movement. It established the standard for individualized education in the least restrictive environment.  This means that a student with a disability should have the opportunity to be educated with non-disabled students as much as is possible.

1975 – The Education For All Handicapped Children Act

  • This federal law was based on the Pennsylvania state law mentioned above. It mandated that all disabled children in America have full access to public education. The law was amended four times and the changes are summarized here.
  • 1986 amendment – A new requirement was added. Preschool services now had to be available for disabled children.
  • 1990 amendment - The law was renamed to the Individuals with Disabilities Education Act (IDEA).
  • 1997 amendment - The law was updated to create three improvements. The first improvement was to expand the role of parents. The second was to increase program funding. The third was to improve the quality and safety of the learning environment.
  • 2004 amendment – Update required teachers, who work in special education, to have extensive training. It also required early intervention programs for preschoolers.
  • This law was the foundation for special education programs to be available in every state.  It established funding to make it happen. It also established a process for the federal government to monitor whether schools were compliant with the law.

1980 – Civil Rights of Institutionalized Persons Act (CRIPA)

  • This was established to protect the civil rights of anyone in the care of state institutions. This included jails, nursing homes, mental health facilities, and institutions for people with ID.
  • This federal law made it illegal to force someone with ID to be surgically sterilized. It also protects institutionalized people from being forced or tricked into serving as research subjects. These are just a couple of examples of how the law protects this vulnerable population.

1990 – Americans with Disabilities Act

  • This court ruling made it illegal to discriminate against a disabled person. The disability can be physical or mental, and includes ID.
  • This federal law provided disabled person fair access to education, jobs, and housing.  For example, an apartment owner can’t refuse to rent an apartment to someone strictly because he or she has a low IQ. The law also established the right of disabled people to quality healthcare.

1999 – Olmstead vs. LC and EW

  • This famous court case was about two women, Lois Curtis and Elaine Wilson. One had mental illness and the other had ID. Both were voluntarily admitted and treated at a psychiatric hospital in Georgia. After treatment, the hospital declared them ready for community based care. Both women, however, remained hospitalized for years past that point. Their communities didn’t have any outpatient programs to manage their care after discharge. For this reason, the doctors didn’t release them from the hospital.
  • This federal law stated that separating these women, and others like them, from the community violated their civil rights. The law required every state to establish and provide community-based services to people with ID when it is (1) appropriate, (2) reasonable, and (3) not refused.

After Change

When people with mental illness and ID were first released from institutions, many people without disabilities were afraid. The fear wasn’t very logical, though. Most people with low IQs are harmless. People who grow up with disabled siblings (like the Kennedys) are often very compassionate and will defend injustice. There are, however, still cases where children and adults with ID are either bullied or marginalized by fellow students and coworkers. Bullying is aggressive behavior used to intimidate a person.  Marginalized people are regarded and treated as insignificant.

Being the victim of a bully can leave a person feeling like they have no worth. Sometimes victims become depressed and socially withdrawn. There is a lot of focus in the United States to stop bullying in the schools and work place. This can be particularly important for people with ID, because they don’t have the skills to defend themselves against bullies. That they are defenseless is the exact reason they are targeted. 

Special Olympics has been a very successful approach for improving the self-esteem of people with ID. The founder was Eunice Kennedy Shriver (Special Olympics Organization). She was President Kennedy’s sister. Shriver was also an athlete in college. She grew up playing sports with her sister, Rosemary, who had ID. Shriver was very disturbed that children who lived in institutions didn’t have a place to play. She developed Camp Shriver in 1962. The first camp was held at her own home and backyard. Nearby institutionalized children ages six to sixteen were invited to spend the summer at this camp. Shriver had recruited enough volunteers and counselors to maintain a one-to-one ratio of supervision. She also recruited world famous exercise experts to help her make the camp activities meaningful. The program’s emphasis was on play and exercise.

From this meager beginning, Camp Shriver grew into the Special Olympics we know today. Shriver’s leadership established high standards from the start. Her foundation trained other camp organizers around the world. Special Olympics today is no longer just a summer event. It is a year round recreation program.  While the focus was originally on physical activity alone, researchers have determined that participation improves other things, too (Harris, 2010). One thing is improved school performance. Another is improved self- esteem. Every participant earns a medal and is treated like a winner. A current slogan for Special Olympics is that it transforms lives through sport (Special Olympics Organization).

Athletic program participation has been linked to higher moral and social development, too. Athletes become part of a team and learn to care about their team mates. An example of this comes from the 2008 Seattle Special Olympics event (Harris, 2010). Nine disabled contestants were gathered at the starting line for the 100-yard dash. The gun went off. Eight of the nine athletes raced down the track. The ninth one stumbled and rolled around on the asphalt. The other eight runners heard him crying and turned to see what happened. Every one of them changed their direction. They all ran towards him to help. One of the girls, who had Down syndrome, knelt down and kissed the crying boy. She told him, “This will make it better”. The bystanders were moved to tears by the compassion of the children. This beautiful story has been told over and over in the last seven years. It is the kind of spotlight that changes negative biases and fear of people with ID.

Case Study

Jimmy was diagnosed with Fragile X syndrome at 15 months old. He is now a 5th grade student with an IQ of 65. He is two years older than his peers in the same grade. Due to this fact, he is bigger than the other students. For his academic courses like math, science, and English, Jimmy is relocated to a different class room. In that setting, he and other students with ID work closely with a special education teacher. He is kept with the non-disabled students for music, art, and physical education classes. Whenever the students play gym games like “Red Rover” or “Freeze Tag”, Jimmy is passed over or picked last. The students have marginalized him to a role of lesser importance.

What are the Special Healthcare Needs for People with ID?

Several ID conditions are associated with low intelligence. Unfortunately, having these conditions often increases the risk for other health problems, too. This section will describe some of the risks in greater detail. People with ID face other healthcare challenges related to an inability to adequately communicate symptoms and concerns. This increases the risk that problems will go unrecognized and untreated. Consider the case study from Shuman (2010), which illustrates this point.

It’s important to also note that people with one particular health condition can have additional, unrelated health conditions. This is called co-morbidities. Having multiple health problems complicates care and treatment. People with ID, who also have mental illness, are particularly complicated to manage.

Fragile X (from the National Fragile X Foundation)

Babies born with Fragile X syndrome have an increased chance of having other birth defects.  These include a greater risk for cleft lip, cleft palate, and clubfoot. Sometimes babies born with Fragile X syndrome are also born with dislocated hips or hernias. This is believed to happen because the connective tissue is loose.

Connective tissue holds skin, muscles, ligaments, bone, and blood vessels together. Having floppy connective tissue increases the risk for scoliosis. This is curvature of the spine. There is also an increased risk of being flat footed. Sometimes the heart valves are floppy and blood will reflux in the opposite direction across the valve. When this happens, the person may need a round of oral antibiotics before having dental work. This is done to reduce the chance of developing a heart infection. If the leaky heart valve is bad enough, surgery may be needed to repair it.

Low muscle tone associated with Fragile X syndrome may make it difficult for babies to hold their head up. This can increase the chance of choking during feedings. Sometimes there is a problem with reflux, too. This increases the chance of vomiting and choking even more. Poor muscle tone can also mean that children with Fragile X syndrome learn to sit up, roll over, crawl, and walk later than other children of the same age.

Frequent ear infections and urinary tract infections (UTIs) are common in people with Fragile X syndrome. Up to 20% also have seizures. Ear infections require prompt treatment to prevent permanent hearing loss. The frequent UTIs are believed to be associated with reflux. Preventing UTIs requires drinking plenty of fluids and scheduling bathroom trips to empty the bladder. When infections occur, oral or IV antibiotics are needed to treat them.  Seizures must be monitored closely. They can usually be prevented with anti-seizure medication.

Assorted eye problems are also common with Fragile X syndrome. These include lazy eyes (strabismus), crossed eyes, drooping eyes (ptosis) and shaking eyes (nystagmus). Specialized eye doctor can work to improve these conditions, if they exist.

Sometimes boys with Fragile X syndrome will develop enlarged testicles during puberty. This usually doesn’t require treatment to resolve. It can be alarming and uncomfortable to the young boy.

Down syndrome (from Down Syndrome Education International)

Some health problems are more common for people who are born with Down syndrome For one thing, people with Down syndrome may have a weaker immune system. Respiratory infections are more common. This is especially true in the preschool years. The risk for leukemia is 10-20% higher than the general population. This is believed to be related to the lower immunity problem. Leukemia is a type of cancer that affects bone marrow and other blood-forming organs. Fortunately, treatment for leukemia has improved dramatically. Today, there is a significant chance of being cured.

About half of children with Down syndrome are also born with heart defects. The most common problem is having a hole between the heart chambers. This allows blood to flow backwards and lets blood with oxygen get mixed in with blood that does not have oxygen in it. This serious condition is either called an atrial or ventricular septal defect depending on if the hole is at the top or bottom of the heart. An operation may be needed to fix the defect.  Complications from heart problems may sometimes lead to an early death in people with Down syndrome.

About 80% of children with Down syndrome experience hearing loss, which ranges from mild to severe. This is partly because of anatomical differences in their ear structure and partly because of their weakened immune system that leads to frequent ear infections. Wax build-up is also common. This, too, can impair hearing. Vision problems are common in people with Down syndrome. Usually, the problems can be fixed with glasses.

Sleep disturbances are also common. This is currently not well understood. It can present as trouble falling asleep or staying asleep. It can also include nightmares or bedwetting. Treatment for sleep problems is individualized depending on what the issue is.

The chance for developing dementia is thought to be 25% greater in people with Down syndrome. The symptoms may present as early as age 30, but the risk increases with age. Fifty years ago, most people with Down syndrome died before age 40. The life expectancy today is longer because of healthcare advances. Many are reaching older ages. Healthcare providers and scientists are working to determine the true frequency of dementia. They are also trying to understand why and how these two are linked.

Cerebral Palsy

Several health problems are more common in people with cerebral palsy (My Child without Limits.org). One issue is trouble swallowing saliva, which leads to drooling. Drooling can irritate skin and cause bad breath.  It can also contribute to lung infections. Dental problems are linked to drooling, too. The risk for tooth cavities is higher in this population. Common chewing and swallowing problems affects the ability to eat. Food refluxing back into the esophagus is a problem, too. Oral motor therapy can be helpful. Sometimes, however, it is necessary to put a feeding tube in the abdomen to prevent malnutrition related to feeding problems.

Bladder problems are common in people with cerebral palsy. This could include incomplete emptying and incontinence. Some people may struggle with frequent urinary tract infections (UTIs). Urine remaining in the bladder for a long time contributes to this. Sometimes it is necessary to place a suprapubic catheter to make sure urine gets removed. A suprapubic catheter drains urine from the bladder through a sterile tube placed in the belly instead of the urethra. A suprapubic catheter can remain longer with less risks than a catheter placed in the urethra.

Problems with controlling movement affects the ability to crawl, sit, stand, and walk. Inactivity is the biggest risk for pressure ulcers. Being less active can cause contractures, too. A contracture is the tightening up of muscles, joints, tendons, and ligaments into a permanently fixed position. When a person can move around at their own will, it is called active exercise. When assistance is needed to make the body stretch and move, it is called passive exercise.  Passive exercise therapy is often required to prevent contractures in people with cerebral palsy. 

Other health problems in this population include vision and hearing problems.  Sleep problems are also common. Seizures are also more prevalent in this population. If any of these occurred, a work-up would be needed to determine the contributing factors. Treatment is individualized.

Apert Syndrome

People with Apert syndrome often have other health risks and conditions. As mentioned earlier, cleft palates are common in this population. The facial deformity of Apert syndrome also alters the way the eyes line up. This causes the eye muscles to be imbalanced. Vision is affected by these changes.

Ear infection are common. When ear infections recur frequently, it has the potential to permanently damage hearing.  The smaller nose and airway passage makes breathing noisy and difficult. This can also increase the risk of upper respiratory infections.

The sweat glands are hyperactive in people with Apert syndrome. Sweating a lot at night is particularly common. Acne is more common because the oily skin traps dirt in the pores. 

Mental health issues are common. Low self-esteem can be associated with feeling unattractive or rejected. This can lead to withdrawal and depression. Low self-esteems increases the risk for substance abuse.

Autism Spectrum Disorder (from Autism Speaks)

People with autism spectrum disorder often have anxiety or depression. The altered mood can make interacting and socializing more difficult. This adds to the difficulty they already experience.

Some people with autism also have attention deficit disorders. This can make learning more challenging.  Sleep problems are common in this population, too. Sleep disturbances can include having trouble falling asleep or staying asleep. Learning is very difficult if the learner is deprived of sleep. Consider the possibility that a child might be dealing with autism, a low IQ, and sleep deprivation at the same time. Is it any wonder that he or she would struggle in school?

Other things that seem to occur more frequently in people with autism spectrum disorder include gastrointestinal problems. These issues range from constipation or diarrhea to inflammatory bowel conditions. Gastroesophageal reflux disease (GERD) is also common. When GERD is a problem, it can also affect sleep. This is because reflux causes heartburn-like pain. The pain is worse when lying down. It is likely that belly pain associated with gastrointestinal problems worsens the behavior problems seen in autism spectrum disorders. Sometimes probiotics are prescribed to prevent gastrointestinal flare-ups. Gluten-free diets seem to make the symptoms better, too.

Several other conditions are also common in this population. These include food allergies, skin allergies, and asthma. Neurologic symptoms, such as headaches and seizures, can also be a problem.  

Fetal Alcohol Spectrum Disorder

According to Minnesota Department of Health (2015), there can be varying degrees of damage done to babies whose mothers drink during pregnancy. How much alcohol the woman drinks is directly linked to the degree of damage. At what stage of the pregnancy she drinks is also critical.

In the first 3-8 weeks of pregnancy, the fetal brain is developing. Heavy drinking during this time can cause significant brain damage. Between weeks 10-20, heavy drinking can cause the unborn child to develop the physical features associated with fetal alcohol syndrome. During the last stage of pregnancy, heavy drinking is linked to learning disabilities. The bottom line is this: drinking during pregnancy causes mental, physical, intellectual, emotional, and social problems. These problems follow the child throughout his or her entire life.

Children with fetal alcohol syndrome often have dyslexia. This causes a problem with word and number recognition. Combining this with ID makes learning even more challenging. Behavioral problems such as hyperactivity are also common.

Sometimes sociopathic tendencies are present, too. A sociopathic person is someone who lacks a sense of moral responsibility for bad behavior. For example, a sociopathic person may engage in criminal activity and not show any remorse, guilt, or shame. A high percentage of people born with fetal alcohol syndrome have these traits. Sadly, that leads to a high percentage having trouble with the law. Many wind up in jail or prison. Early treatment is critical to prevent this.

People born with fetal alcohol syndrome have a greater risk to develop addiction problems in their lifetime.  Mental illness is quite common, too. This may manifest as depression, withdrawal, isolation and unpredictable behavior.

Prader-Willi Syndrome

In the earlier discussion of Prader-Willi syndrome, it was noted that an obsession with food develops and can cause significant weight gain. Prader-Willi is, in fact, the most common known cause of childhood obesity. This obesity problem continues into adulthood. Medical concerns associated with Prader-Willi syndrome mainly include the complications of obesity.

Overweight people are more likely to have high blood pressure, high cholesterol levels, and insulin resistance. This increases the risk for several diseases including heart disease, stroke, and diabetes. Each of these conditions are serious and can shorten a person’s life.

Heavy people will often develop large necks. This increases the risk for sleep apnea. When a person has sleep apnea, it means that there are pauses in the breathing during sleep. Usually this causes interrupted sleep that isn’t very restful. The disorder leads to daytime sleepiness. It also worsens high blood pressure. If left untreated, it could cause sudden death.  

Obesity puts extra pressure on the joints, too. This can makes movement painful. Arthritis can also develop because of the increased wear and tear on the joint as they carry a heavier than normal load.

People with Prader-Willi also have a condition called hypogonadism. This means that the sex organs don’t secrete enough hormones. Low hormone secretion is the reason that people with Prader-Willi are unable to have children. Low hormone levels have other negative effects on the body, too. For example, it increases the risk for developing osteoporosis. Osteoporosis is a condition that causes bones to become fragile and weak. Weaker bones break more readily. Hip fractures are very common in people with osteoporosis.

Even though they have insatiable hunger, people with Prader-Willi syndrome have a low metabolism and actually need less calories than most people. A balanced, low-calorie diet is recommended. Growth hormone therapy may also be prescribed to treat the condition.

Many people with Prader-Willi have behavioral problems and mental health issues. These can include low self-esteem and depression. Early treatment is important for the best outcome.

Case Study

Johnny is a 57-year-old male with ID since birth. His IQ is below 50. He is able to take care of many of his personal needs but cannot live independently. Until 18 months ago, he lived with his mother. After she died, he went to live with his sister who is also his legal guardian. Johnny was having to adjust to two big changes in his life. He lost both parents in a two year span and was grieving the loss. He had also moved away from the home where he spent his entire life.

Johnny’s sister/guardian found many obstacles and challenges in providing him with appropriate services and healthcare. For example, she noticed that he frequently had to return to the bathroom several times after urinating. Johnny said he still felt like he needed "to go" after leaving the bathroom. He denied any pain or burning with urination. At their visit with the primary care provider, Johnny's sister described the problem and was asked to leave the room while Johnny was examined. Upon returning to the room, Johnny's sister was told everything "looked fine". She then asked if his prostate was enlarged. She was told that the exam had not included examination of the prostate. She requested this be done and was asked to leave the room again. Upon her return, she was told that his prostate was enlarged. The doctor prescribed medication and a follow-up appointment. Without the advocacy of his sister, Johnny's problem may not have been identified as quickly. This raises the question of whether or not the physical exam of a "normal" male would have included a prostate exam without the need for additional questioning.

What is the Role of the Nursing Assistant in Caring for People with ID?

Caring for people with ID requires tolerance, patience, and sensitivity. Nursing assistants are often key providers of essential care to support people with ID who cannot independently meet their own activities of daily living. This section covers some of the knowledge and skills necessary for a nursing assistant to succeed in that role.

Residential care in an earlier section, it was emphasized that 95% of people with ID have a mild to moderate disability.  Usually, people in those categories live independently or with family. The remaining 5% with severe or profound ID live in residential centers. Other names for residential centers include nursing homes or long term care facilities. People who live in these facilities are referred to as “residents”. Nursing assistants who work in long term care facilities play a critical role in the lives of residents.

In the course of daily life, people move around, dress, eat, shower, groom, and use the bathroom.  A person is considered to be functionally impaired if they cannot perform these fundamental self-care activities without assistance. Requiring assistance with these tasks is the primary reason for living in a residential center. The goal of residential care is to supplement or restore functional abilities. The emphasis is always on what they can do, not what they can’t.

The abilities of residents with ID vary. Most are capable of meeting some portion of their own needs, however.  It may seem nice and service-oriented to take over and “do” self-care tasks for a disabled person. Certainly, it is faster than to patiently wait for someone who is slow to perform the task himself. But this approach can cause more harm than good if a person with ID who is capable of “doing” is denied the opportunity. It encourages him or her to become overly dependent. Often, he or she will lose even more functional ability as a result.  Experiencing some degree of independence with self-care is beneficial, too. It boosts confidence and self-esteem. Residents with ID must be expected and encouraged to do as much as they can, even if it takes longer. Self-care or assisted care is always preferred over total care. Consider the case study below which illustrates this point.

Hand-Under-Hand

Jennifer is a 5 year old female with an IQ score of 40. She lives with her parents and has not yet started school. When Jennifer’s mother was diagnosed with cancer, the oncologist recommended that Jennifer be placed in a respite care unit during the intense inpatient chemotherapy treatment. The healthcare workers at the respite center were surprised to discover that Jennifer would not feed herself. It became evident that Jennifer’s mother spoon-fed her, even though Jennifer had the potential to do this for herself. In the three week that Jennifer was at the center, she was taught to use a fork and spoon with the hand-under-hand technique. Follow-up conversations with the parents uncovered the mother’s thinking and motivation. She believed that feeding Jennifer demonstrated love and strengthened their bond.

Hand-under-hand, described in the case study, is a technique used to assist people with cognitive and learning disabilities. The helper’s hand performs the activity while the hand of the person with the disability rests on top. Multiple demonstrations of the task allows the disabled person to understand the steps of the task. Eventually, the helper’s hand is placed over the disabled person’s hand instead of under. This allows the person with the disability to actually feel the utensil while they are assisted to perform the task. Through repetition, new learning occurs or memory is tapped. The goal is that the helper eventually withdraws his or her hand to allow independence with the task performance.

Hygiene and Grooming

Maintaining personal hygiene enhances physical and emotional well-being. The way that a nursing assistant assists with personal care and hygiene can reinforce a sense of feeling valued. One way to demonstrate valuing a resident with ID is to consider and respect preferences. For example, some may prefer a bath while others prefer a shower. Some may prefer to shower or bathe in the morning while others may prefer evenings. If at all possible, try to accommodate the preference.

It is important to realize that culture plays a role in a person’s hygiene practices. To be culturally sensitive, a nursing assistant should try to understand events from the resident’s perspective. More information about cultural sensitivity is included later in this learning module.

To facilitate bathing, the nursing assistant should gather all supplies in advance. He or she should also make sure the bathroom temperature is comfortable and provide as much privacy as possible. A non-slip mat or shower seat should be placed in the tub or shower to reduce the risk of falls. The water temperature and pressure should be adjusted for comfort. The resident with ID should be assisted in and out of the tub to prevent falling. If he or she cannot transfer in and out of the tub, good body mechanics and safe patient handling devices must be used to assist. A sponge bath provides an alternate method of bathing if the shower or tub is not feasible.

Appearance makes a statement about how a person feels. It also affects how other people perceive and respond to a person. Residents with ID should be encouraged to dress appropriately and groom their hair. This will make them feel attractive and be more socially acceptable to others.

Skin care is important especially for the resident who is incontinent or inactive. After an episode of incontinence, the nursing assistant should promptly clean the skin to avoid irritation. If the person is inactive, the nursing assistant must be diligent to turn them every two hours or more frequently. This is done to prevent pressure ulcers or contractures. The nursing assistant should pay close attention to the condition of the skin. Any signs of redness, swelling, or pressure ulcer development must be promptly reported to the nurse.

Oral care promotes healthy teeth and gums. Regular brushing and flossing can prevent tooth decay and mouth disease. It keeps the breath fresh, making the person more pleasant to be around. Good mouth care also prevents lips and mucous membranes from becoming dry and cracked. When oral care is neglected, it can contribute to poor appetite and unplanned weight loss. It has also been linked to pneumonia. This is because, without good oral care, bacteria grows in the mouth and can get aspirated into the lungs.

As with other hygiene activities, the resident with ID should be encouraged to be as independent as possible with brushing and flossing. Sometimes prompting can guide them through the steps. To prompt, the nursing assistant might start by saying something like, “Pick up the toothbrush”. After the resident with ID performs that task, the next prompt would be given.  “Apply the toothpaste”. The nursing assistant would continue to give concise prompts like this and then pause for the response. If the resident doesn’t follow the commands, hand under hand technique could be tried as a follow-up. The nursing assistant would only take the lead to get the task done after efforts like these have been attempted and failed. Nursing assistants should encourage independence using prompting or hand under hand techniques every day. Even if the attempt didn’t appear to work yesterday is not proof it won’t work today.

Dentures, like teeth, need regular care. These should be cleaned twice a day. Dentures should also be checked regularly for proper fit. The nursing assistant should inspect the mouth whenever assisting with oral care. White spots, sores, or bleeding should be immediately reported to the nurse.

Communication

Effective communication skills are important for a nursing assistant to develop. People with ID will usually respond to what is said and how it is said. When lines of communication are positive, it opens the door to cooperation.  

Understanding what someone is communicating may be easier for a person with ID than making someone understand what they are communicating. That is because they often struggle with verbalizing their needs. Nursing assistants who spend a lot of time with them can learn to pick up on non-verbal cues and anticipate needs. Having consistent caregiver assignments will promote this. For this reason, a nursing assistant should have the same client or resident assignment as much as possible.

Nursing assistants should use a relaxed friendly tone when speaking with an intellectually disabled person. Despite the disability, it is important to communicate in ways that acknowledge the age of the person. Smiling and making eye contact are helpful strategies. So are speaking slowly and using words that are easy to understand. Describing what is about to happen before touching a person can reduce fear and promotes cooperation, too.

It is important for a nursing assistant to demonstrate respect. Calling a person by their preferred name is one way to do this. Terms like “honey” or “sweetie” should be avoided. Even people with lower IQs can find such childish references offensive. Nursing assistants should not hold a side-bar conversations with another person in the presence of an intellectually disabled person. This could be interpreted as talking about them. Laughing may also be interpreted as laughing at them. 

If a nursing assistant is not sure whether a person is able to understand what is being said, it is best to assume they can. Understanding can be monitored and language style adjusted accordingly.  One way to monitor understanding is to watch for non-verbal clues like a puzzled look.

Nutritional Support

Proper nutrition improves the quality of life. Poor diets can contribute to problems with being underweight or overweight. It can also cause gastrointestinal problems and fatigue. Poor nutrition makes a person vulnerable to disease and infections.

People with ID may need nutritional support to avoid the problems described. Assistance may be necessary for purchasing and preparing healthy, safe foods. If the disability is severe or profound, assistance may even be needed with the task of eating itself.

Nursing assistants often provide feeding assistance that is needed. In residential centers, residents should be moved to a community dining area for meals if at all possible. Approximately 30 minutes before the meal, the resident should be assisted to the toilet. Pain and nausea, if present, should be treated an hour before the meal. Certain tasks set the tone for the meal and promotes a good appetite. These include washing the hands and face, providing oral care, and tidying the environment.

Food preferences should be considered and respected as much as possible. Residents with ID should be encouraged to be as independent as possible with eating. Prompting and hand-under-hand techniques are useful tools for encouragement. Spoon-feeding may be necessary, however.

Safety strategies are needed to avoid choking when spoon-feeding. Food should be cut into small bite-sizes. Bites should be offered at an unhurried pace to avoid stress and prevent choking.  Food and drink should be alternated as an additional strategy to prevent choking.

Persons with ID who live in the community may need assistance with buying and preparing foods. A nursing assistant in a community caregiver role may provide transportation to the grocery store. They might also have a role in preparing or serving food. A nutritionist is often involved with planning the meals, especially if a special diet is required to treat a secondary health problem like diabetes.

Since nursing assistants play such a key role in providing nutritional support, he or she may be the first to recognize a problem. Reporting issues with appetite, weight gain and loss, choking, or food intolerances is extremely important. The longer a nutrition problem goes unmanaged, the more serious are the consequences.

Providing Meaningful Activities

Meaningful activities stimulate, entertain, and prevent boredom. Nursing assistants can promote activities in residential centers by providing help and encouragement. Common activities include music, yoga, arts and crafts, and movies. Intellectually disabled residents may require varying degrees of assistance to participate.

As discussed earlier, children with ID can receive individualized education in public schools. Stimulating activities in this setting are geared to the skill level and interest of the students. Opportunities may exist for nursing assistants in the special education environment if a child requires assistance with activities of daily living.

Cultural Sensitivity

People in cultural groups have a set of values, beliefs, and behaviors that are accepted as a standard. These standards are learned from other members of the group and regarded as truths. People, not of the cultural group, might have a very different perspective. An example of this is the view that different cultures have of older people. In Asian and Indian cultures, elders are usually regarded highly by members of their cultural group. The older adults are proud of their age. They are sought by younger members for their wisdom. In other countries, like the United States, youth is more highly regarded than age. Americans spend a lot of money trying to look and feel younger than they are. Younger Americans are less likely to seek advice from their parents and grandparents, too. This is because they regard them as being outdated instead of wise. 

People tend to interpret other people’s behavior through their own culture. They expect other people to think and act the way people in their personal culture do. Cultural sensitivity is an important concept for nursing assistants. It requires being able to recognize difference as just that. Different. Not good or bad and right or wrong. Once the judgement is removed, it becomes possible to accept people as they are and strive to treat them as they want to be treated. Cultural sensitivity takes time to develop, but there are many books and learning modules that can help.

Culture can affects how formally or informally a person wants to be addressed. It can affect how comfortable they are with close contact or touching. Gender roles are defined differently from one cultural group to another. Even making direct eye contact has different meanings for different cultural groups. A nursing assistant who treat everybody the very same way may unknowingly offend someone because of differences like the ones described.

The intellectually disabled belong to families and cultural groups. This can affect how they think and act. It can also affect how the family and group thinks and acts toward the person with ID, too. Nursing assistants should strive to learn about the cultural preferences of their clients with ID. That is so they can respect and accommodate preferences if possible. And they can guard against making harsh judgements about behaviors that are culturally-based.

Managing Difficult Behaviors

Meaningful activities stimulate, entertain, and prevent boredom. Nursing assistants can promote activities in residential centers by providing help and encouragement. Common activities include music, yoga, arts and crafts, and movies. Intellectually disabled residents may require varying degrees of assistance to participate.

As discussed earlier, children with ID can receive individualized education in public schools. Stimulating activities in this setting are geared to the skill level and interest of the students. Opportunities may exist for nursing assistants in the special education environment if a child requires assistance with activities of daily living.

Reporting Suspected Abuse

Disability increases a person’s chance of being mistreated because they aren’t able to defend themselves. This concept is called vulnerability and was discussed earlier. Laws exist to protect the rights of vulnerable people. This includes the right of disabled people to be free from abuse.

Healthcare workers are required by law to report suspected abuse. Some healthcare workers mistakenly think they should only report abuse once it is proven. But most state laws require that “suspicion” be reported. This is so that social workers and police can investigate. If an investigation rules out abuse, there is no harm in the report. But if suspicion goes unreported until there is absolute proof, the victim would continue in an abusive situation for a longer time. A nursing assistant should notify the nurse if there is reason to think abuse might be occurring.

Abuse can be physical, verbal, mental, emotional, sexual, or financial. Physical abuse is the easiest to recognize because of the visible evidence of injury. Verbal abuse can result from constant criticism and name calling that leaves a person feeling bad about themselves. Though the psychological scars aren’t as evident, it can be just as painful. Mental and emotional abuse can lead to stress and anxiety. Sexual abuse can negatively affect a victim physically, mentally, and emotionally. Financial abuse results from misusing or stealing money resources meant for the disabled.

Abusers are usually close to the victim. Often it is family members or even healthcare workers, serving as the primary caregivers, who inflict the abuse. Some sources believe this results from the stress of being in a caregiver role for a long time. It’s easy for a caregiver to get frustrated, overwhelmed, and exhausted. As a result, a caregiver may say something mean or be physically rougher than he or she intended. Even though injury was not intentional, this behavior is still considered unhealthy and abusive. Family members should be encouraged to find support and take breaks from the caregiver role.

As caregivers, nursing assistants should also safeguard against this risk. Taking breaks and asking coworkers for help is wise when feeling overwhelmed. Balancing a stressful work life with a healthy personal life is another good approach. Most states limit how much overtime healthcare providers can work. This is because fatigue contributes to being easily frustrated and overwhelmed.

One of the most difficult things to do is to report a co-worker if abuse is witnessed. But nursing assistants must remember that the intellectually disabled cannot protect and defend themselves. They rely on others to do it for me.

Conclusion

ID is a disability characterized by limitations in intellectual functioning and adaptive behavior. Nursing assistants encounter people with ID in hospitals, clinics, schools, and residential homes. Understanding their special needs and developing strategies to meet those needs is essential.  

References

American Association on Intellectual and Developmental Disabilities. Definition of Intellectual Disability. Retrieved February 8, 2015 at (Visit Source).

American Psychological Association. Intelligent intelligence testing. Retrieved February 12, 2015 at (Visit Source).

Association of Retarded Children. The Arc answers: Prader-Willi syndrome. Retrieved online March 20, 2015 at (Visit Source).

Autism Speaks. Treatment for associated medical conditions. Retrieved online April 3, 2015 at (Visit Source).

Down syndrome Education International. Discovering potential; transforming lives. Retrieved online March 24, 2015 at (Visit Source).

Minnesota Department of Health. Fetal alcohol syndrome. Retrieved online April 3, 2015 at (Visit Source).

Harris, J. (2010). Intellectual disability: A guide for families and professionals. New York: Oxford Press.

Howlin, P. Understanding intellectual disability and health: Autism spectrum disorders. Retrieved online March 24, 2015 at (Visit Source).

Medline Plus. Fetal alcohol spectrum disorders. Retrieved online March 29, 2015 at (Visit Source).

Medline Pus. Intellectual disability. Retrieved February 22, 2015 at (Visit Source).

Muir, H. (2003). Einstein and Newton showed signs of autism. New Scientist. Retrieved March 15, 2015 at (Visit Source).

My Child Without Limits. Common health problems associated with cerebral palsy. Retrieved online March 24, 2015 at (Visit Source).

National Down syndrome Society. What is Down syndrome? Retrieved February 18, 2015 at (Visit Source).

National Fragile X Foundation. Medical issues associated with Fragile X Syndrome. Retrieved online April 1, 2015 at (Visit Source).

National Institute of Health. Apert syndrome. Retrieved February 15, 2015 at (Visit Source).

National Institute of Health. What is a gene? Retrieved January 15, 2015 at (Visit Source).

National Institute of Neurological Disorders and Stroke. Autism fact sheet. Retrieved online March 26, 2015 at (Visit Source).

Shepherd, A. (2012). The case of Drew: An animated social narrative intervention to improve the social skills of a student with a mild intellectual disability (MID). Journal of Student Engagement: Education matters, 2 (1), 65–77.

Shuman, P. (2010). Mental retardation: Special healthcare needs. CEU Fast.

Special Olympics Organization. Eunice Kennedy Shriver. Retrieved online March 21, 2015 at (Visit Source).

Special Olympics Organization. Fragile X syndrome. Retrieved online February 21, 2015 at (Visit Source).

United Cerebral Palsy Foundation. What is Cerebral Palsy? Retrieved online March 16, 2015 at (Visit Source).

United States Food and Drug Administration. Thimerosal in vaccines. Retrieved online March 24, 2015 at (Visit Source).

Wehmeyer, M. (2013). The story of intellectual disability: An evolution of meaning, understanding, and public perception. Baltimore, Maryland: Brookes Publishing.

National Institutes of Health. Apert syndrome. Retrieved March 24, 2015 at (Visit Source).


This course is applicable for the following professions:

Certified Nursing Assistant (CNA), Home Health Aid (HHA)

Topics:

CPD: Practice Effectively, Psychiatric


Last Updated: