Introduction

In this module, we will explore how to work with people with developmental disabilities. We will discuss what it means to have a developmental disability, some of the causes of disability, and how normal functioning can be affected. We will take a closer look at some specific developmental disabilities, such as intellectual disabilities, cerebral palsy, autism, and neurological impairments. We will also talk about how to best help meet the needs of a person with a developmental disability by exploring Maslow’s Hierarchy of Human Needs and how they apply to a person with a developmental disability. Finally, we will discuss what the role of a Home Health Aide/Personal Care Aide is in the home of a person with a developmental disability.

Unit A: Understanding Developmental Disabilities

What Is a Developmental Disability?

A disability is an impairment of functioning. Functional impairments may be physical (affect the body) or cognitive (affect mental functioning). A developmental disability is a disability that may affect physical, cognitive, learning, language, or behavioral development (CDC, 2015c). This means that there may be a developmental delay in normal development (how a person grows and functions) or an impairment of functioning (the person may not be able to function according to normal developmental processes). Developmental disabilities occur across all gender, racial, ethnic, and socioeconomic groups. According to the CDC (2015c), about 1 in 6 children have a developmental disability or a developmental delay.

Developmental disabilities begin in young childhood, may impact a child’s ability to function in one or more areas, and may continue throughout the person’s life. Parents, caregivers, teachers, and medical professionals may notice that a child is not progressing according to normal developmental milestones. Developmental milestones are things that a child typically does around a certain age (CDC, 2015b). For example, around 18 months old, a child is able to walk, is beginning to feed themselves, and can say several words (CDC, 2015b). Around 5 years old, a child typically speaks clearly, can print letters and numbers, is able to toilet themselves, and can do things such as hop, skip, and jump (CDC, 2015b). When parents and caregivers notice their child is not reaching typical developmental milestones, they may express their concern to a medical professional. The medical professional can assess the child using a variety of Developmental Screening Tools.

For more information on developmental milestones, you can visit CDC.gov(www.cdc.gov), which is your online source for credible health information and is the official Web site of the Centers for Disease Control and Prevention (CDC). You can link directly to information about Developmental Milestones at: http://www.cdc.gov/ncbddd/actearly/milestones/index.html.

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How Does Having a Developmental Disability Affect Normal Development?

Having a developmental disability can affect normal development in a variety of ways. It all depends on the type of developmental disability the person has.

Self-Care & Movement

The person may have trouble performing activities of daily living (ADLs) independently. They may be unable to perform tasks such as bathing, dressing, toileting, or feeding themselves. If the developmental disability impacts their physical functioning, the person may have trouble using their muscles. They may for example, be unable to control their muscle movements. This may affect their ability to perform ADLs, to walk, and to get from one place to another.

Communication & Social Situations

‘The person with a developmental disability may have trouble communicating with others. They may have difficulties with speaking, understanding the speech of others, writing, or reading. The person may have trouble in social situations. In addition to communication problems, they may have difficulties understanding social situations. They may have trouble understanding social cues and things such as nonverbal communication. This can be a source of great frustration for the person with a developmental disability. Having difficulties communicating with others can impact their ability to make friends and have the social support they need. This may also impact their ability to perform in school, work, and in social settings.

Financial Independence & Self-Direction

The difficulty or inability to perform in a setting such as a work setting can affect a person’s ability to provide for themselves and support themselves financially. This impacts the person’s ability to live independently. They may need to rely on others to care for them for their entire lives. If a person needs to depend on others to care for them, they may feel an inability to make choices for themselves and to control the direction of their own lives.

Coping

The person’s ability to cope with stressors may also be impacted. If a person has difficulties physically performing tasks, moving, communicating with others, being understood, supporting themselves physically and financially, they may have many different emotions. They may feel angry, frustrated, resentful, depressed, hopeless, guilty, and even embarrassed. They may also have a hard time letting others know their needs, wants, and feelings.

Families with a person with a developmental disability may also have a difficult time coping. They too may feel angry, frustrated, resentful, depressed, hopeless, guilty, and even embarrassed. Home Health Aides/Personal Care Aides can help provide the emotional support the patient and family needs in addition to providing assistance with physical tasks such as feeding and dressing.

Types of Developmental Disabilities

The impact on functioning and ability to achieve developmental milestones depends on the type of developmental disability the person has. Remember, each person is unique and has different strengths, talents, and areas they need help with. This is true for all persons, including people who have a developmental disability. It is important to always remember to treat each person as a unique individual who has strengths, who is part of a family, and who can make a positive contribution to their family and community. Every person, regardless of having special needs, has the same physical and emotional needs that everyone else has. The job of a Home Health Aide/Personal Care Aide is to help the person have their physical and emotional needs met by providing self-care and emotional support.

A person with a developmental disability may have more than one type of disability. For example, they may have an intellectual and a physical disability. Their ability to function may be impacted on both cognitive and physical levels. Remember though, that just because a person has one type of disability, such as a physical disability, that they do not automatically also have an intellectual disability. They may have physical impairments, but be at the average or above average level of functioning on an intellectual level.

There are many different types of developmental disabilities. Some of the many developmental disabilities include intellectual disabilities, Down syndrome, cerebral palsy, autism spectrum disorders, ADHD, hearing and vision impairments, and learning disabilities. We will explore some of the many types of developmental disabilities.

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Intellectual Disabilities

Intellectual disabilities have been commonly known as mental retardation, although this term is no longer used (Leahy, Fuzy & Grafe, 2013) as it is offensive. Having an intellectual disability means the person’s cognitive ability is below the average for a person at their age. People with intellectual disabilities may range from having a mild to a severe intellectual impairment (CDC, 2015d).

Physical, social, and communication problems may occur in a person who has an intellectual disability. People with an intellectual disability may have a hard time communicating with others, letting their needs be known, coping, and performing ADLs (CDC, 2015d). They may take a longer time to reach developmental milestones such as learning to crawl, walk, and speak, and may have problems learning in school (CDC, 2015d).

Intellectual disabilities can occur due to any number of reasons, all of which occur before the person is 18 years of age. It can be caused by an injury, disease, problem in the person’s brain, trauma while the person is in the womb or while being born, or a genetic disorder (CDC, 2015d).

Fetal alcohol syndrome, Down syndrome, fragile X syndrome, and genetic disorders occur before birth, while the child is developing inside the womb (CDC, 2015d). This means that the cause of the disability is due to an environmental factor, such as the ingestion of alcohol by the mother in fetal alcohol syndrome. In the case of Down syndrome or fragile X syndrome, a genetic mutation occurs while the baby is developing, and is what we call a congenital defect (a defect in the genes or chromosomes).

Fragile X syndrome is the most common intellectual disability, affecting 1 in 4,000 boys and 1 in 6,000-8,000 girls in the United States (CDC, 2015f). It occurs as a result from a genetic mutation on the X chromosome. Fragile X syndrome may result in learning disabilities, delays in speech and language, ADHD, and anxiety (CDC, 2015f). There is no cure for Fragile X syndrome, but early interventions can be of great benefit to children and families affected by this syndrome.

Down syndrome is another type of genetic disorder in which there is an extra copy of chromosome 21 instead of the typical two copies (Leahy, Fuzy & Grafe, 2013). A person with Down syndrome often has distinguishing physical characteristics such as a small skull, flattened nose, shorter fingers, a larger space between the first two digits on the hands and feet (Leahy, Fuzy & Grafe), and a larger tongue. There are varying degrees of intellectual impairment. Some people with Down syndrome are dependent on others for care, while others can be largely independent.

You can learn more about intellectual disabilities at CDC.gov(www.cdc.gov), which is your online source for credible health information and is the official Web site of the Centers for Disease Control and Prevention (CDC). You can link directly to information about intellectual disabilities at:

http://www.cdc.gov/ncbddd/actearly/pdf/parents_pdfs/IntellectualDisability.pdf

Cerebral Palsy

Cerebral palsy is a group of disorders that affect muscle coordination. Cerebral means pertaining to the brain; palsy means weakness having to do with muscles (CDC, 2015a). Cerebral palsy occurs due to brain damage that can occur while the baby is within the womb or during birth.

The symptoms of cerebral palsy vary from person to person (CDC, 2015a). Some people have just some trouble with motor coordination (doing things like moving, walking, or controlling their hand movements). Other people with cerebral palsy may have severe impairments and be unable to walk, perform ADLs, and will rely on others for their care for the rest of their lives. While some people with cerebral palsy only have problems with their motor functioning and ability to control their muscles, some may also have intellectual, learning, vision, hearing, or speech problems (CDC, 2015a).

Some of the symptoms you might see with a person with cerebral palsy include: spasticity (stiff muscles), dyskinesia (uncontrollable muscle movements), and ataxia (poor balance and coordination) (CDC, 2015a). In spastic cerebral palsy, which, according to the CDC (2015a), affects 80% of people with cerebral palsy, people have muscle stiffness, which affects their ability to move. They may have stiffness in both legs, one side of their body, or in both their arms and legs.

In dyskinetic cerebral palsy, people have trouble controlling their muscle movements and their movements may be jerky and uncoordinated (CDC, 2015a). The ability to swallow and chew can even be affected.

In ataxic cerebral palsy, people have problems with coordination, which affects their ability to walk or perform activities easily (CDC, 2015a). They may have trouble with fine muscle movement such as writing or using a fork and knife.

All of these types of cerebral palsy can affect a person’s ability to perform ADLs and to care for themselves. People with cerebral palsy may be able to live independently, or may require care throughout their lives.

You can learn more about cerebral palsy at CDC.gov(www.cdc.gov), which is your online source for credible health information and is the official Web site of the Centers for Disease Control and Prevention (CDC). You can link directly to information about cerebral palsy at: http://www.cdc.gov/ncbddd/cp/facts.html

Autism

There are a variety of types of autistic disorders which can affect a person’s ability to communicate, their social interactions, and may cause behavioral problems. Autism ranges across what is called the autism spectrum. This means impairments may range from mild to severe. Most people with autism appear to look like anyone else and do not have any obvious disability (CDC, 2015e). People with autism can range in their ability to learn, communicate, interact socially, and behave. Some people with autism have severe learning, social, and behavioral impairments which greatly impact their functioning. Other people with autism are highly gifted and have above average IQ scores.

According to the CDC (2015e) in early childhood, parents may begin to notice things in their child such as avoidance of eye contact, not liking physical contact such as hugging, having trouble interacting with others when they speak with them, difficulty being empathetic (understanding how another feels), repetition of words or actions, or seeming as if they are not interested in others around them or that they do not know how to interact with others. There may also be issues such as having a hard time adapting to changes in routines and behavioral issues such as temper tantrums when such changes occur.

One in 68 children has an autism spectrum disorder CDC (2015e). There is no known cause, but there appears to be a strong genetic link to having autism. This means if a sibling has autism, other children in the family are more at risk. According to the CDC (2015e), there is also evidence that suggests older parents, and some medications that women take while pregnant are linked to a higher risk of a child having autism.

While there is no cure for autism, early childhood interventions can greatly help a person with autism cope with social and emotional stressors, and learn to function as normally as possible (CDC, 2015e). Speech, occupational, and behavior therapies may be included in the Care Plan. Medications may also be used to help with behavioral issues. People with autism may be able to live independently, or they may be dependent on others for their care.

You can learn more about autism at CDC.gov (www.cdc.gov), which is your online source for credible health information and is the official Web site of the Centers for Disease Control and Prevention (CDC). You can link directly to information about autism by following this link: http://www.cdc.gov/ncbddd/autism/facts.html

Neurological Impairments

A neurologic impairment means that there is an impairment of functioning within the person’s nervous system (their brain and spinal cord). Neurological impairments could impact hearing, vision, motor coordination, speech, learning abilities, behavior, and cognitive functions. This could be due to genetic problems, or environmental factors, such as brain injuries. Examples of neurological impairments include vision problems, hearing problems, Tourette’s syndrome, and Attention Deficit Hyperactivity Disorder.

Tourette’s syndrome is a nervous system disorder in which people have what are called “tics” (CDC, 2014a). Tics are repetitive behaviors involving the motor system (such as twitching or repetitive blinking) and vocal tics (such as grunting), which occur several times throughout the day for at least one year (CDC, 2014a). These behaviors cannot be controlled by the person. One out of approximately every 360 children in the United States has Tourette’s syndrome (CDC, 2014c). A person with Tourette’s syndrome may have other behavioral or developmental disorders, or they may not.

Attention Deficit Hyperactivity Disorder (ADHD) is another type of neurological condition. ADHD is a very common childhood disorder which often lasts into adulthood. It involves difficulty with inattentiveness (trouble paying attention), hyperactivity (excessive activity), and impulsiveness (acting without thinking) (CDC, 2015g). People with ADHD may have difficulty paying attention or functioning in school or work, have trouble with social interactions, and may have behavioral problems. A person with ADHD may or may not have other behavioral, emotional, or developmental disorders.

Behavioral interventions, medications, and support can help people with Tourette’s syndrome and ADHD function as independently as possible. You can learn more about Tourette’s syndrome and ADHDat CDC.gov(www.cdc.gov), which is your online source for credible health information and is the official Web site of the Centers for Disease Control and Prevention (CDC). You can link directly to information about Tourette’s syndrome by following this link: http://www.cdc.gov/ncbddd/tourette/documents/tourette–fact–sheet_photo.pdf.pdf ; orADHD information at this link: http://www.cdc.gov/ncbddd/adhd/documents/adhdfactsheetenglish.pdf

Multiple Disabilities

When a person has multiple disabilities, it means they have more than one type of disability. They may have a physical disability plus an intellectual disability. They may have a behavioral impairment that impacts their ability to learn, but have an average or above average intelligence level. It is always important for Home Health Aides/Personal Care Aides to find out about the unique strengths and needs of the person with whom they are working. Never assume that a person with a physical disability also has an intellectual disability and vice versa.

Levels of Functioning

People who have intellectual disabilities will have an IQ (intelligence quotient) test performed to assess their degree of their impairment along with a variety of Developmental Screening Tools assessments. Degrees of impairment means at what level of functioning does the person have? They can range from mild to severe levels of impairment.

Mild

A person with a mild level of impairment has an IQ in the 50-69 range (Leahy, Fuze & Grafe, 2013). There may be some delays in the child achieving normal developmental milestones. They may walk or talk at a later age than other children. With early interventions and support, the child can learn social and work skills, and be able to be fairly independent and live alone or in a type of group home.

Moderate

A person with a moderate level of impairment has an IQ in the 35-49 range (Leahy, Fuze & Grafe, 2013). There are usually delays in speech, communication, and motor development. With early interventions and support, the child can learn social and work skills, and be able to be fairly independent and live alone or in a type of group home with additional support.

Severe

A person with a severe level of impairment has an IQ in the 20-34 range (Leahy, Fuze & Grafe, 2013). There are usually obvious physical and learning delays in a child who is severely impaired. They may have difficulty communicating with others, using motor skills, and being able to meet their own needs. They will likely need assistance with performing ADLs, but can learn to feed, toilet, and dress themselves with assistance.A person with a severe impairment will likely live with their family or in a facility such as a group home or special school in order to have their care needs met.

Profound

A person with a profound level of impairment has an IQ below 20 (Leahy, Fuze & Grafe, 2013). There are usually delays in most areas of development, such as communication, motor skills, learning skills, and social skills. In some cases, the person’s ability to interact with their environment is very limited. A child with a profound level of impairment can learn to walk and communicate with support. They will typically need assistance with self-care for their entire lives and a lot of supervision and support. A person with a profound impairment will likely live in a special facility if they are unable to live with their family.

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Effects of Developmental Disabilities on Growth and Development

Developmental disabilities impact growth and development in a variety of ways. It all depends on the type of disability and the functioning level of the person. No two people are alike. One person with Down syndrome may be able to live fairly independently while another person with Down syndrome may require constant supervision.

People with intellectual disabilities may have trouble with learning and require special help to learn skills such as reading, writing, and mathematics. Learning may occur at a slower rate compared to other children of the same age.

People with cerebral palsy may have trouble with motor skills and require assistance learning how to perform ADLs independently, or may require total care. Their ability to learn motor skills such as walking and feeding may happen at a later time compared to other children of the same age.

A person who has autism may have impairments in communication and with social skills. They may need extra support and behavioral interventions to help them communicate and interact with others. Their ability to interact with others may take a longer time compared to other children of the same age.

Children and adults with neurological impairments may have trouble with their senses, such as vision and hearing. They may or may not have any other physical or intellectual disability. They may require assistance with learning how to function independently. Learning language and communicating with others for a child with a hearing or vision loss may happen at a later time compared to children of the same age.

It is important for Home Health Aides/Personal Care Aides to be familiar with the timeline for normal developmental milestones. If they notice that a child with whom they are working is not meeting developmental milestones, they should discuss their concerns with their supervisor. The health care team can further assess the child to see if special testing and additional resources and support would be helpful.

You can visit CDC.gov (www.cdc.gov), which is your online source for credible health information and is the official Web site of the Centers for Disease Control and Prevention (CDC). You can download a Milestone Moments booklet to use in your work with children and their parents at the CDC.gov’s website at: http://www.cdc.gov/ncbddd/actearly/pdf/parents_pdfs/milestonemomentseng508.pdf

Causes of Developmental Disabilities

Developmental disabilities can occur in several ways. Some are due to congenital defects. Congenital defects are problems that occur during development of the person when they are in utero (in the mother’s womb) and due to a mutation or error in genetic coding of their genes or chromosomes. Examples of congenital defects include Down syndrome and fragile X syndrome.

Developmental disabilities can also be acquired (obtained after birth or as a result of something not related to genetics). They can occur from an infection that occurs during pregnancy. Pregnant women need to take special care to remain infection free and to avoid people and children who have bacterial and viral infections, such as chicken pox, rubella (German measles), and toxoplasmosis. Toxoplasmosis is bacteria that are ingested by eating undercooked meat or handling cat feces (such as while cleaning out a litter box).

Developmental disabilities such as cerebral palsy are often caused by brain damage (due to a loss of oxygen) during the development or delivery of the baby, or they may be caused by a birth injury or an infection. Developmental disabilities can occur due to poor prenatal care (care the mother receives while pregnant). If, for example, a pregnant woman drinks alcohol, smokes, uses drugs, or does not receive proper nutrition, her child could potentially have a developmental disability.

Fetal Alcohol Syndrome (FAS) can cause physical and intellectual disabilities and birth defects. Fetal Alcohol Syndrome is one type of developmental disability that can be 100% prevented by not drinking alcohol during pregnancy. When a pregnant woman drinks alcohol, the alcohol passes through the umbilical cord to the baby (CDC, 2014c). The baby ingests alcohol along with the mother. Children with FAS may have abnormal facial features such as a smooth ridge between the nose and upper lip, small head size, and a less than average height and weight (CDC, 2014b). Hyperactivity, learning disabilities, speech and language delays, low IQ, poor reasoning and judgment skills, and trouble with vision or hearing may also result due to FAS (CDC, 2014b; CDC 2014c). If Home Health Aides/Personal Care Aides observe that a pregnant woman with whom they are working drinking alcohol, they should immediately report this to their supervisor. It is important to remember and to educate pregnant women that no amount of alcohol is safe.

To learn more about Fetal Alcohol Syndrome, you can visit CDC.gov (www.cdc.gov), which is your online source for credible health information and is the official Web site of the Centers for Disease Control and Prevention (CDC). You can learn more information about Fetal Alcohol Syndrome by visiting this link at the CDC.gov’s website: http://www.cdc.gov/ncbddd/fasd/documents/fas_alcoholuse.pdf. A brochure called An Alcohol Free Pregnancy can be downloaded and shared with patients from the CDC website: http://www.cdc.gov/ncbddd/fasd/documents/fasdbrochure_final.pdf

Pregnant women need to take special care during their pregnancies by eating a healthy diet, taking prenatal vitamins their physician prescribes, and refraining from ingesting cigarettes, alcohol, or drugs. Smoking, drinking, and using drugs while pregnant increases the risk for a baby to be premature or have low birth weight. Premature babies (birth that occurs before the baby is fully developed and before 37 weeks of gestation) or low birth weight babies (babies who are less than 5 pounds 8 ounces at birth) are also more likely to have developmental disabilities as they did not have enough time in utero to properly develop.

Lead poisoning can also lead to a child having a developmental disability. This is a type of disability that occurs after the child is born. Lead can be found in a number of sources, such as construction materials, batteries, and paint. Homes and buildings used to be built using lead materials. Children who live in older homes are the most at risk for lead poisoning as lead may be in the building materials or paint used. Children tend to put many things in their mouths. Lead poisoning can occur if a child ingests (eats) paint and other materials that have lead in them. Lead poisoning can impact a child’s physical development (such as cause muscle and bone problems), cause behavioral problems or cognitive problems (such as difficulty paying attention and learning), cause anemia (low blood count), and weight loss. The good news is that people who live in older buildings can have their paint tested to check for lead. If there is a concern about this, speak to a supervisor.

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How Is a Developmental Disability Different from Mental Illness?

There are several differences between a person who has a developmental disability and a person who has a mental illness. Developmental disabilities are permanent, while mental illnesses may be temporary, with recovery being possible. A person is diagnosed with having a developmental disability before the age of 22, and often when they are babies. A person can have a mental illness at any point in their lifetime, from childhood to late adulthood.

A person with a developmental disability may have a mental illness. It may be evident at a young age, or it may develop later in life. Regardless of when it develops, it is important to remember that a developmental disability and a mental illness are not the same thing. They each must be treated in special ways.

For Home Health Aides/Personal Care Aides, it is important to be aware of the signs and symptoms of mental illness, as discussed in Module 5. If a person has difficulty performing everyday tasks, caring for themselves, communicating with others, and being able to be independent, they may have feelings of frustration, depression, anger, anxiety, and hopelessness. One way to support a person who has a developmental disability and a mental health issue is to help teach them positive coping strategies as we discussed in Module 5.

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Unit B: Developmental Disabilities and Home Care

Developmental Disabilities at Home

In some cases, a person with a developmental disability may reside in a long-term care facility or group home. Workers in those environments help to provide care and support for the person. Other times, a family who has a member with a developmental disability may decide to care for their family member within the home. They may need to have extra help doing so. This is where the very important role of a Home Health Care Aide/Personal Care Aide comes in. They may help to provide assistance with completion of ADLs, provide supervision, teach positive coping skills to the patient and family, and serve as a source of respite (relief for the family) during times of high stress or high life demands. Their role is to help the family and patient in meeting their needs. They will provide emotional support in addition to completing physical care and home care tasks. Two of the most important roles providing care within the home are to help the person be as independent as possible and to always promote self–determination (making choices and plans for oneself).

Self-Check Activity m6-6

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Caring for a Child with a Developmental Disability

Caring for a child with a developmental disability is the same as caring for any other child in the sense that they have the same basic needs. They need food, water, safety, love, a sense of belonging within their family and community, social interaction, and to develop a sense of independence and self-determination.

Unlike other children the same age, they may require additional care. They may not achieve the same developmental milestones, or they may achieve them at a later date than other children their same age. They may need extra help in school, or have additional members on their home health care team to help meet their needs. With extra support and treatment interventions, children with developmental disabilities can lead full and productive lives, filled with joy and happiness, just like any other children.

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Caring for an Adult with a Developmental Disability

Caring for an adult with a developmental disability is the same as caring for any other adult in the sense that they have the same basic needs. They need food, water, safety, love, a sense of belonging within their family and community, social interaction, and to develop a sense of independence and self-determination. Unlike other adults at the same age, they may require additional care. They may not be able to do the same things as other adults their age. For example, they may not be able to live independently, or go to work, or have a family of their own. Or, they may be able to do many of these things, but need some additional support.

It is very important to remember that just because the adult may have impairments, they are not children. Even if they need to have complete care, they should be treated as an adult. They should be provided with opportunities to socialize with other adults, to make choices, and to be as independent and self-reliant as possible. Always treat adults with developmental disabilities as adults, not children.

Another aspect of working with adults with a developmental disability is to be aware that many also have sexual desires and needs, just like any other adult. Just because a person has a disability does not mean that they are incapable of sexual or emotional intimacy. People who have physical disabilities may need to make adjustments during sexual intimacy, but this does not mean that they are not capable of having sexual relationships or they do not desire them or have sexual feelings. Never make judgments or assume you know the sexual needs or behaviors of a person with a disability. Always be respectful of times needed for privacy.

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Expectations and Attitudes

As we have discussed throughout this course, all people have different views of family, come from different cultures, and have different beliefs and values. Everyone has their own unique identities, and we all have many parts to what makes us who we are. Regardless of whether the person has a developmental disability or not, it is important to remember that all of these differences should be respected and valued.

Philosophy and Current Trends in the Field

Address the Person, Not the Disability

One other important aspect of providing home care to a person with a developmental disability to know about and to respect is in regard to the terms that people use to describe their disability. Most of us do not like to be identified by a physical feature or a problem that we have. Some people may not like the term “disabled” and prefer to use the term “ability challenged”, or another term.

Home Health Aides/Personal Care Aides should always use the term(s) that the family and patient prefer. Take cues about terms families prefer by the language they use. Be sensitive when referring to a person with a disability. Be careful not to say things like, “They are disabled” or “They are deaf”. Never identify a person with a disability by their disability. For example, Home Health Aides/Personal Care Aides should not say, “He/she is a blind person” or “He/she is an autistic” or say things such as, “The ADHD patient” or “The Down’s patient.” These terms are offensive and label the person as a disability rather than a person with a disability. Instead, they should say things like, “He/she has ADHD/Down syndrome/Tourette’s syndrome, etc.” or “He/she has a visual/hearing/physical etc. impairment.”

Focus on Independence, Productivity, and Integration

In working with all people, it is important to promote independence. This is no different when working with people with developmental disabilities. While they may have some limitations, such as not being physically able to walk or feed their selves, this does not mean that a person with a developmental disability is unable to be independent in all ways.

Home Health Aides/Personal Care Aides should allow their patient with a disability to do all they can for themselves. They should not take over doing something just because they may be able to do it better or more quickly. Be patient and kind. Allow time for tasks to be completed and don’t rush the patient. When people feel they are working with someone who is patient and who gives them time to complete a task, they are more willing to try to do it themselves. This will give them a sense of independence and productivity. Never push a patient to do something they may not be able. This will only lead to a sense of failure and guilt.

Another important aspect in working with people with disabilities is to promote integration. Integration means including and involving a person with a disability with other people who do not have a disability. Whenever possible, people who have disabilities should be included in family and community activities. Work with a supervisor and the family to plan activities to involve the patient.

Promote Self-Determination and Community Participation

Promoting self–determination (the ability to make one’s own choices, decisions, and plans) is important for all people. Promote self-determination with patients by giving them choices. Allow them to decide foods or clothing they prefer or the order of tasks to complete. A HHA/PCA can ask, “What would you like to do first? Take a bath or brush your teeth?” Encourage the patient to select activities they would like to do for fun and work to involve your patient with their family and community as much as possible. There are many resources within communities for families to participate in. These may include school or church events, community events such as field days or musical events, or visiting local attractions such as zoos and museums. All people have a need to be a part of something and to be involved with others around them.

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Care Needs

Remember that a disability is not an illness, although it may lead to increased care needs of the person. People with disabilities, whether they are physical, cognitive, learning, or social impairments of functioning have the same basic needs as other people. We discussed Maslow’s Hierarchy of Needs in Module 2. Let’s explore how these apply to working with patients who have a developmental disability.

Physical Needs

In working with a patient with a developmental disability, Home Health Aides/Personal Care Aides may be asked to provide or assist with self-care. This includes bathing, skin care, dressing, toileting, and feeding. Taking vital signs, shopping for and preparing food for their patient, and measuring intake and output are other important tasks Home Health Aides/Personal Care Aides do to help patients meet their patient’s physical needs. Promote independence in the patient being able to meet their own physical care needs whenever possible. Home Health Aides/Personal Care Aides may have to be their patient’s voice if they are unable to communicate their needs. Be aware of things you can do to promote comfort, such as provide fluids, extra pillows to support an arm the patient is not able to physically control, turn and position an immobile patient, and provide food throughout the shift. A patient depends on their HHA/PCA to meet their physical needs, even if they are unable to tell them what these needs are.

Safety and Security Needs

A person who has a developmental disability may be reliant on others, including Home Health Aides/Personal Care Aides, to protect them from harm. Keeping the patient’s home clean and free from dirt by completing tasks such as laundry, vacuuming, and cleaning maintains a safe environment for the patient. Ensuring that patients properly use assistive devices such as canes, walkers, and wheelchairs also ensures their safety. Remember to always lock brakes on chairs that can roll during patient transfer. Be cautious of trip and fall hazards. Be proactive in preventing accidents.

Teach the patient to be as independent as possible within safety constraints. If something is not safe for them to do alone, Home Health Aides/Personal Care Aides should discuss this with them and help them complete the task. Maintaining good personal hygiene and washing hands is also an important part of the tasks Home Health Aides/Personal Care Aides complete to provide for the safety and security needs of their patient. Observing for signs of abuse or harm that may be going on in the home is a very important part of providing for the safety and security needs of a patient. Report any signs of abuse to a supervisor immediately.

Love and Belonging Needs

A person with a developmental disability has the same need for love and belonging as anyone else. By promoting involvement with the family and community, Home Health Aides/Personal Care Aides can help them meet this crucial need. Find opportunities for the patient to socialize with others, including people with and without disabilities. Encourage patients to be involved with spiritual and religious practices they and their family believe in. Support their belief in prayer before meals and bedtime if this is something they choose. Home Health Aides/Personal Care Aides can promote a feeling of love and belonging by being respectful, nonjudgmental, and having the attitude that everyone has strengths and can make unique contributions to their family, community, and society.

Self-Esteem Needs

It is important to help promote positive self-esteem in all patients. People who have a disability may at times feel guilty, embarrassed, or that they are not a valued part of their family or community due to having a disability. Home Health Aides/Personal Care Aides can support development of their patient’s self-esteem by being nonjudgmental, helping them to find and utilize their strengths and talents, and by promoting independence. They can demonstrate to their patients that they accept them for who they are and that they are not defined by their disability.

Remember to always talk to and not about a person with a disability. Treat them with respect and use positive communication methods, taking care to be conscious of nonverbal communication. Be sensitive to their feelings and recognize that the person may have many different feelings about their situation. Never assume that you know what these are. Encourage them to talk about their feelings and thoughts and help them to develop healthy coping strategies. Always maintain the dignity of a person who has a disability, even if they are totally dependent on others for their care. They may be very vulnerable and rely on their Home Health Aides/Personal Care Aides to provide their privacy and confidentiality.

Self-Actualization Needs

To help a person with a disability meet Maslow’s highest level of the Human Needs Hierarchy, self-actualization, Home Health Aides/Personal Care Aides should work with the patient to help them set goals and dreams for the future. Don’t be judgmental about the goals they have for themselves. Even if the goal may seem to be unachievable to you, never make a person feel hopeless about their future or their dreams. Encourage the patient to take small steps to reach larger goals and provide praise and support along the way. Support the person in making decisions and choices whenever possible.

Self-Check Activity m6-10

Check your answers!

Role of the Home Health Aide/Personal Care Aide

The role of a Home Health Aide/Personal Care Aide will vary depending on the needs of the patient with a developmental disability and their family. For many patients, Home Health Aides/Personal Care Aides will assist with providing or assisting to provide self-care. The personal care skills covered in previous modules and in future modules in this course will all be used to work with a patient with a developmental disability. This includes bathing, skin care, and dressing, toileting, feeding, and assisting with ambulation.

Home Health Aides/Personal Care Aides will monitor their patient’s health as directed by the Care Plan. They may be asked to measure intake and output. They may assist with housekeeping and meal preparation for their patient. They may provide respite for the family and assist with supervision and child care while the family is busy with another task or to allow them some respite.

As with all patients, using good communication skills is important and essential in doing their job well and meeting the needs of their patient. It will also be part of the job to help teach patients who need help learning effective communication skills. As with all patients, an important part of the job is to always be observing and documenting changes in physical, mental, emotional, or social health.

Report any issues of concern to a supervisor immediately. Always be sure to document any observations and tasks that you have completed and only once they are completed. Be watchful of issues of concern in the home such as domestic violence, substance abuse, or child abuse. Report any concerns to a supervisor immediately.

Performance Standards

Home Health Aides/Personal Care Aides will use all of the basic skills they have learned in working with people with developmental disabilities. Remember the following:

• Speak to all people respectfully and politely.
• Include the patient in conversations. Speak with and not about them. Do not assume they cannot understand what is being said about them.
• Use positive verbal and nonverbal communication skills. Avoid negative communication.
• Explain things in a way the patient will understand. Observe how they receive information and make adjustments to how you communicate based on their understanding.
• Encourage the patient to think by asking questions rather than just giving commands to them. Allow them a chance to respond and to make choices.
• Encourage independence by allowing the patient to do as much as they can rather than doing for them. Be patient and allow extra time for task completing. Give praise and encouragement. Never be negative or criticize the patient when they try to complete a task.
• Include the patient in decisions and provide choices to them whenever possible. This promotes self-determination and independence.
• Always respect differences and individual desires, needs, and values.
• Consider others’ feelings and concerns, even if they are different from your own. We are all different, and will have differences in opinion and values. Never be judgmental.

Follow these basic guidelines with all patients, including those who have developmental disabilities. While Home Health Aides/Personal Care Aides may need to make adjustments in how they complete tasks or how they communicate, the basic set of skills and performance standards are required for work with every patient. Following these will allow Home Health Aides/Personal Care Aides to provide the best care they can and to allow their patient to become as independent as possible.

 Post-test

1. True or False: All people, regardless of having a disability have the same physical and emotional needs and should be treated with respect and as unique individuals.
2. True or False: Developmental disabilities occur across all gender, racial, ethnic, and socioeconomic groups.
3. True or False: All people with physical disabilities also have impairments in intellectual functioning.
4. True or False: Fetal Alcohol Syndrome can be 100% prevented by a woman not drinking alcohol while pregnant. HHAs/PCAs should inform their supervisor if they see a pregnant patient drinking alcohol.
5. In which ways could a developmental disability possibly impact a person? Select all that apply.
   1. ability to complete activities of daily living
   2. ability to be financially independent
   3. ability to understand social cues
   4. ability to walk or use muscles
   5. ability to speak or understand speech
   6. ability to cope in positive ways
6. True or False: Children with developmental disabilities have the same needs as other children, although they may require additional care and take longer to reach developmental milestones.
7. True or False: Having a developmental disability is the same thing as having a mental illness.
8. True or False: Two important goals of a HHA/PCA when working with a person with a developmental disability is to work to promote independence and self-determination.
9. Which of the following is an appropriate way to refer to a person with a disability? Select the 2 correct answers.
   1. “The ADHD girl.”
   2. “The Down’s child.”
   3. “He has a visual impairment.”
   4. “The deaf boy.”
   5. “My patient has autism.”
10. In which ways can a HHA/PCA promote independence and self-determination when working with a patient who has a disability? Select all that apply.
    1. Be patient and encouraging while the patient works to complete tasks.
    2. Include the patient in family and community activities.
    3. Allow the patient to make decisions about food, clothing, activities, and goals.
    4. Don’t rush the patient or do for them what they can do for themselves.
    5. Speak with and not about the patient.
    6. Be respectful and protect the patient’s rights to confidentiality.

Check your answers!

Self-Check M6-1 Answers:

1. True

2. A, B, C, E

3. True

FEEDBACK:

1. A developmental disability means there is impairment in at least one area such as physical, cognitive, learning, language, or behavioral development.

2. Children should generally reach particular milestones by certain ages. Between 1 year and 18 months children generally begin walking. By one year children generally say a few words and their vocabulary begins to expand a great deal by 18 months. A child who is unable to walk by age 5, unable to crawl by age 18 months, or who has not said any words by age 7 may have a developmental disability.

3. It is important for HHA/PCAs to make careful observations of the children with whom they work. They should report any concerns to their supervisor. Help is available for children who have developmental disabilities.

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Self-Check M6-2 Answers::

1. True

2. False

FEEDBACK:

1. All people, regardless of circumstance, illness, age, race, religion, ethnicity, or gender are unique individuals and should be treated with respect. This also includes people who have a disability.

2. Not every person with a physical disability also has an intellectual disability. In some instances this may be true, but not in all. The HHA/PCA should never assume a person with a physical disability also has an intellectual disability, and vice versa.

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Self-Check M6-3 Answers::

1. True

2. True

FEEDBACK:

1. People with severe or profound intellectual disabilities have delays in most areas of development, including physical, intellectual, and social. They will usually require supervision and extensive assistance in completing ADLs.

2. A person with a mild to moderate intellectual disability may experience delays in some areas of development including intellectual, physical, and social. However, with support and assistance, they may be able to function independently.

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Self-Check M6-4 Answers::

1. A & D

2. B & D

3. True

FEEDBACK:

1. Acquired developmental disabilities are those that are obtained after birth (rather than while the baby was developing within the womb). Lead poisoning occurs when a child ingests lead. Fetal alcohol syndrome

2. A congenital developmental disability is due to a defect that occurs while the baby is developing in the womb. Down syndrome and Fragile X syndrome are disorders that occur due to mutations of genes. This happens while the baby is developing.

3. Pregnant women should avoid alcohol, smoking, and drugs. These substances have been known to cause learning, physical, social, and intellectual disorders. They are very harmful to a developing baby.

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Self-Check M6-5 Answers::

1. False

2. True

FEEDBACK:

1. Developmental disabilities and mental illness is not the same thing, although a person may have both. A person is diagnosed with having a developmental disability before the age of 22, while a person can have a mental illness at any point in their lifetime

2. A person with a developmental disability can also have a mental illness, which can occur at any point in their lives, even though they were diagnosed with a developmental disability as a child.

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Self-Check M6-6 Answers:

1. B

FEEDBACK:

1. Providing respite for a family means providing relief and assistance for a family who cares for a patient. Respite activities may include providing assistance with completion of ADLs, light housekeeping, emotional support, and providing companionship to the patient.

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Self-Check M6-7 Answers:

1. True

FEEDBACK:
1. All people, regardless of disability have similar needs: food, water, safety, love, a sense of belonging within the family and community, social interaction, and to develop a sense of independence and self-determination. While people with developmental disabilities may need additional care, support, and time to achieve goals and to meet daily living needs, they can still lead full and productive lives.

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Self-Check M6-8 Answers:

1. False

2. True

FEEDBACK:

1. Regardless of the amount of care needed, all adults should be treated as adults, and not children. Home Health Aides/Personal Care Aides should take care to treat all adults, regardless of impairment as adults and provide respect for each individual.

2. While people with disabilities may need to make adjustments during sexual intimacy, this does not mean that they are not capable of sexual relationships, that they do not desire them or that they do not have sexual feelings. Always be respectful of times needed for privacy.

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Self-Check M6-9 Answers:

1. False

2. A

3. False

FEEDBACK:

1. It is not okay to call a person disabled just because they have a disability. Always use terms the patient and family prefer. Remember, most of us do not like to be identified by a physical feature or a problem that we have.

2. Self-determination is the ability to make our own choices, decisions, and future plans. It is important for the HHA/PCA to promote self-determination with all patients.

3. It is not okay to take over a task just because a person may be taking a long time or if they make mistakes. This negatively impacts a person’s self-esteem. It is important for the HHA/PCA to promote independence for all patients with whom they work. Sometimes, tasks patients do on their own may take a longer time than if you did it for them. This is okay. Remember to have patience.

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Self-Check M6-10 Answers:

1. All of these are tasks you can do to help a person with a disability meet their needs.

FEEDBACK: Assisting a patient to learn to tie their own shoelaces is good way to promote independence, which is an important patient need. Providing the patient with choices, using the name they prefer for which to be called, and encouraging involvement in family activities and church activities are also important ways to help a patient meet their self-esteem, love and belonging, and self-actualization needs. Providing skin care, changing bed linens, and preparing meals for a patient are ways to help patients meet physical needs. Reporting suspicions of abuse and locking wheelchair brakes are ways to help patients meet their safety needs.

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Post-Test Answers:

1. True

2. True

3. False

4. True

5. ALL are possible ways a person could be impacted.

6. True

7. False

8. True

9. C and E

10. All are ways to promote independence and self-determination.

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References

 Centers for Disease Control and Prevention. (2014a, August 8). Tourette syndrome overview. Retrieved from http://www.cdc.gov/ncbddd/tourette/documents/tourette–fact–sheet_photo.pdf.pdf

Centers for Disease Control and Prevention. (2014b, April 17). Alcohol use in pregnancy. Retrieved from http://www.cdc.gov/ncbddd/fasd/alcohol–use.html

Centers for Disease Control and Prevention. (2014c, September 12). An alcohol-free pregnancy is the best choice for your baby. Retrieved from http://www.cdc.gov/ncbddd/fasd/documents/fasdbrochure_final.pdf

Centers for Disease Control and Prevention. (2015a, January 12). Facts about cerebral palsy. Retrieved from http://www.cdc.gov/ncbddd/cp/facts.html

Centers for Disease Control and Prevention. (2015b, February 11). Milestone moments. Retrieved from http://www.cdc.gov/ncbddd/actearly/pdf/parents_pdfs/milestonemomentseng508.pdf

Centers for Disease Control and Prevention. (2015c, February 12). Developmental disabilities. Retrieved from http://www.cdc.gov/ncbddd/developmentaldisabilities/

Centers for Disease Control and Prevention. (2015d, February 12). Facts about intellectual disability. Retrieved from http://www.cdc.gov/ncbddd/actearly/pdf/parents_pdfs/IntellectualDisability.pdf

 Centers for Disease Control and Prevention. (2015e, February 24). Facts about ASD. Retrieved from http://www.cdc.gov/ncbddd/autism/facts.html

Centers for Disease Control and Prevention. (2015f, March 9). Facts about fragile X syndrome. Retrieved from http://www.cdc.gov/ncbddd/actearly/pdf/parents_pdfs/fragile_x.pdf

Centers for Disease Control and Prevention. (2015g, April 8). ADHD fact sheet. Retrieved from http://www.cdc.gov/ncbddd/adhd/documents/adhdfactsheetenglish.pdf

Leahy, W., Fuzy, J., & Grafe, J. (2013). Providing home care: A textbook for home health aides (4th ed.). Albuquerque, NM: Hartman.