Disability and Health Sourcebook, Fifth Edition

Preface

About This Book

According to the statistics provided by the Centers for Disease Control and Prevention (CDC), around 61 million adults in the United States live with at least a disability. Although most people with disabilities lead healthy, and productive lives, having a disability may increase the risk for illness or injury and interfere with educational goals or employment. In addition, people with more severe disabilities may require help with activities of daily living, such as dressing, bathing, and meal preparation, or might even need part- or full-time nursing care.

Disability and Health Sourcebook, Fifth Edition offers basic information about birth defects, genetic disorder, sensory disabilities, speech disorders, intellectual and cognitive disabilities, learning disabilities (LDs), and other types of impairment caused by chronic illness, injury, and trauma. It discusses assistive technology (AT), mobility aids, and therapies. Information about the importance of nutrition, exercise, personal hygiene, and pain management is also provided. For parents of children with disabilities, the book offers facts about special education, including early intervention services, Individualized Education Programs (IEPs), and other supports. Legal, employment, and financial concerns for people with disabilities are also explained. The book concludes with a glossary of terms related to disabilities and a directory of resources for additional help and information.

How to Use This Book

This book is divided into parts and chapters. Parts focus on broad areas of interest. Chapters are devoted to single topics within a part.

Part 1: Introduction to Disabilities provides statistical data of people with disabilities in the United States and discusses the prevalence of disability in children, women, and older adults. The myths and facts about people with disabilities are listed. It identifies common barriers that people with disabilities face in mainstream society along with abuses encountered by people with disabilities.

Part 2: Types of Disabilities identifies the symptoms, diagnosis, and treatment of the most common forms of disabling conditions, including birth defects, genetic disorder, sensory disabilities, speech disorders, intellectual and cognitive disabilities, learning disabilities, and other types of impairment caused by chronic illness, injury, and trauma.

Part 3: Technologies and Services That Help People with Disabilities and Their Families provides information about devices, therapies, and supports that help people with disabilities attend school, engage in work, and enjoy recreational activities. Facts about mobility aids such as canes and wheelchairs, communication and hearing aids, and low vision devices are discussed, and information about speech, occupational, physical, and recreational therapies is provided. It also discusses the accessible transportation systems available for the people with disabilities.

Part 4: Staying Healthy with a Disability discusses strategies for maintaining physical health and emotional wellness in people who have disabilities. Patients and caregivers will find information on healthy eating, weight management, personal hygiene, and physical activity, as well as tips on managing pressure sores, pain, depression, and anxiety. The part concludes with details on how people with disabilities can protect themselves from COVID-19.

Part 5: Special Education for Children with Disabilities identifies laws that support the education of children with disabilities, such as the Individuals with Education Act (IDEA) and Section 504 of the Rehabilitation Act. Facts about evaluating children for disability, early intervention services, Individualized Education Programs (IEPs), and supports, modifications, and accommodations for students are also included.

Part 6: Legal, Employment, and Financial Concerns for People with Disabilities describes disability rights laws that protect people with disabilities from discrimination. It also discusses housing and safety issues for people with disabilities and addresses employment and workplace concerns, Social Security disability benefits, and tax benefits for people with disability.

Part 7: Additional Help and Information provides a glossary of important terms related to disabilities and a directory of organizations that help people with disabilities and their families.

Bibliographic Note

This volume contains documents and excerpts from publications issued by the following U.S. government agencies: ADA.gov; Administration for Community Living (ACL); Center for Parent Information & Resources (CPIR); Centers for Disease Control and Prevention (CDC); Centers for Medicare & Medicaid Services (CMS); Clinical Center (CC); Education Resources Information Center (ERIC); Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD); Eldercare Locator; Federal Bureau of Prisons (BOP); Federal Communications Commission (FCC); Federal Student Aid; Internal Revenue Service (IRS); MedlinePlus; National Center on Birth Defects and Developmental Disabilities (NCBDDD); National Council on Disability (NCD); National Eye Institute (NEI); National Heart, Lung, and Blood Institute (NHLBI); National Highway Traffic Safety Administration (NHTSA); National Human Genome Research Institute (NHGRI); National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS); National Institute of Biomedical Imaging and Bioengineering (NIBIB); National Institute of Dental and Craniofacial Research (NIDCR); National Institute of Neurological Disorders and Stroke (NINDS); National Institute of Standards and Technology (NIST); National Institute on Aging (NIA); National Institute on Deafness and Other Communication Disorders (NIDCD); National Science Foundation (NSF); Office of Disease Prevention and Health Promotion (ODPHP); Office on Women’s Health (OWH); Ready.gov; StopBullying.gov; U.S. Department of Education (ED); U.S. Department of Health and Human Services (HHS); U.S. Department of Homeland Security (DHS); U.S. Department of Justice (DOJ); U.S. Department of Labor (DOL); U.S. Department of State (DOS); U.S. Department of Transportation (DOT); U.S. Department of Veterans Affairs (VA); U.S. Equal Employment Opportunity Commission (EEOC); U.S. Fire Administration (USFA); U.S. Food and Drug Administration (FDA); U.S. Library of Congress (LOC); U.S. Office of Personnel Management (OPM); U.S. Social Security Administration (SSA); and USA.gov.

It also contains original material produced by Infobase and reviewed by medical consultants.

About the Health Reference Series

The Health Reference Series is designed to provide basic medical information for patients, families, caregivers, and the general public. Each volume provides comprehensive coverage on a particular topic. This is especially important for people who may be dealing with a newly diagnosed disease or a chronic disorder in themselves or in a family member. People looking for preventive guidance, information about disease warning signs, medical statistics, and risk factors for health problems will also find answers to their questions in the Health Reference Series. The Series, however, is not intended to serve as a tool for diagnosing illness, in prescribing treatments, or as a substitute for the physician–patient relationship. All people concerned about medical symptoms or the possibility of disease are encouraged to seek professional care from an appropriate health-care provider.

A Note about Spelling and Style

Health Reference Series editors use Stedman’s Medical Dictionary as an authority for questions related to the spelling of medical terms and The Chicago Manual of Style for questions related to grammatical structures, punctuation, and other editorial concerns. Consistent adherence is not always possible, however, because the individual volumes within the Series include many documents from a wide variety of different producers, and the editor’s primary goal is to present material from each source as accurately as is possible. This sometimes means that information in different chapters or sections may follow other guidelines and alternate spelling authorities. For example, occasionally a copyright holder may require that eponymous terms be shown in possessive forms (Crohn’s disease vs. Crohn disease) or that British spelling norms be retained (leukaemia vs. leukemia).

Medical Review

Infobase contracts with a team of qualified, senior medical professionals who serve as medical consultants for the Health Reference Series. As necessary, medical consultants review reprinted and originally written material for currency and accuracy. Citations including the phrase Reviewed (month, year) indicate material reviewed by this team. Medical consultation services are provided to the Health Reference Series editors by:

Dr. Vijayalakshmi, MBBS, DGO, MD

Dr. Senthil Selvan, MBBS, DCH, MD

Dr. K. Sivanandham, MBBS, DCH, MS (Research), PhD

Health Reference Series Update Policy

The inaugural book in the Health Reference Series was the first edition of Cancer Sourcebook published in 1989. Since then, the Series has been enthusiastically received by librarians and in the medical community. In order to maintain the standard of providing high-quality health information for the layperson the editorial staff at Infobase felt it was necessary to implement a policy of updating volumes when warranted.

Medical researchers have been making tremendous strides, and it is the purpose of the Health Reference Series to stay current with the most recent advances. Each decision to update a volume is made on an individual basis. Some of the considerations include how much new information is available and the feedback we receive from people who use the books. If there is a topic you would like to see added to the update list, or an area of medical concern you feel has not been adequately addressed, please write to: custserv@infobaselearning.com.

Part 1 | Introduction to Disabilities

Chapter 1 | What Is a Disability?

A disability is any condition of the body or mind (impairment) that makes it more difficult for the person with the condition to do certain activities (activity limitation) and interact with the world around them (participation restrictions).

There are many types of disabilities, such as those that affect a person’s:

Vision

Movement

Thinking

Remembering

Learning

Communicating

Hearing

Mental health

Social relationships

Although people with disabilities sometimes refers to a single population, this is actually a diverse group of people with a wide range of needs. Two people with the same type of disability can be affected in very different ways. Some disabilities may be hidden or not easy to see.

According to the World Health Organization (WHO), disability has three dimensions:

Impairment in a person’s body structure or function, or mental functioning; examples of impairments include loss of a limb, loss of vision or memory loss.

Activity limitation, such as difficulty seeing, hearing, walking, or problem solving.

Participation restrictions in normal daily activities, such as working, engaging in social and recreational activities, and obtaining healthcare and preventive services.

Disability can be:

Related to conditions that are present at birth and may affect functions later in life, including cognition (memory, learning, and understanding), mobility (moving around in the environment), vision, hearing, behavior, and other areas. These conditions may be:

Disorders in single genes (e.g., Duchenne muscular dystrophy (DMD))

Disorders of chromosomes (e.g., Down syndrome)

The result of the mother’s exposure during pregnancy to infections (e.g., rubella) or substances, such as alcohol or cigarettes.

Associated with developmental conditions that become apparent during childhood (e.g., autism spectrum disorder (ASD) and attention deficit hyperactivity disorder or ADHD)

Related to an injury (e.g., traumatic brain injury (TBI) or spinal cord injury)

Associated with a longstanding condition (e.g., diabetes), which can cause a disability such as vision loss, nerve damage, or limb loss

Progressive (e.g., muscular dystrophy (MD)), static (e.g., limb loss), or intermittent (e.g., some forms of multiple sclerosis (MS))

What Is Impairment?

Impairment is an absence of or significant difference in a person’s body structure or function or mental functioning. For example, problems in the structure of the brain can result in difficulty with mental functions, or problems with the structure of the eyes or ears can result in difficulty with the functions of vision or hearing.

Structural impairments are significant problems with an internal or external component of the body. Examples of these include a type of nerve damage that can result in multiple sclerosis, or a complete loss of a body component, as when a limb has been amputated.

Functional impairments include the complete or partial loss of function of a body part. Examples of these include pain that does not go away or joints that no longer move easily.

What Is the Difference between Activity Limitation and Participation Restriction?

The World Health Organization (WHO) published the International Classification of Functioning, Disability and Health (ICF) in 2001. The ICF provides a standard language for classifying body function and structure, activity, participation levels, and conditions in the world around us that influence health. This description helps to assess the health, functioning, activities, and factors in the environment that either help or create barriers for people to fully participate in society.

According to the ICF:

Activity is the execution of a task or action by an individual

Participation is a person’s involvement in a life situation

The ICF acknowledges that the distinction between these two categories is somewhat unclear and combines them, although basically, activities take place at a personal level and participation involves engagement in life roles, such as employment, education, or relationships. Activity limitations and participation restrictions have to do with difficulties an individual experiences in performing tasks and engaging in social roles. Activities and participation can be made easier or more difficult as a result of environmental factors, such as technology, support and relationships, services, policies, or the beliefs of others.

The ICF includes the following in the categories of activities and participation:

Learning and applying knowledge

Managing tasks and demands

Mobility (moving and maintaining body positions, handling and moving objects, moving around in the environment, moving around using transportation)

Managing self-care tasks

Managing domestic life

Establishing and managing interpersonal relationships and interactions

Engaging in major life areas (education, employment, managing money or finances)

Engaging in community, social, and civic life

It is very important to improve the conditions in communities by providing accommodations that decrease or eliminate activity limitations and participation restrictions for people with disabilities, so they can participate in the roles and activities of everyday life.

Disability and Health Information for People with Disabilities

Since the Americans with Disabilities Act (ADA) was enacted in 1990, many social barriers have been removed or reduced for people with disabilities. But, there is more work that needs to be done for people with disabilities to become more independent and involved in their world. Good health is important to be able to work, learn, and be engaged within a community.

Healthy Living

People with disabilities need healthcare and health programs for the same reasons anyone else does—to stay well, active, and a part of the community.

Having a disability does not mean a person is not healthy or that she or he cannot be healthy. Being healthy means the same thing for all of us—getting and staying well so we can lead full, active lives. That means having the tools and information to make healthy choices and knowing how to prevent illness.

Safety

People with disabilities can be at higher risk for injuries and abuse. It is important for parents and other family members to teach their loved one how to stay safe and what to do if they feel threatened or have been hurt in any way.

Assistive Technology

Assistive technologies (AT) are devices or equipment that can be used to help a person with a disability fully engage in life activities. AT’s can help enhance functional independence and make daily living tasks easier through the use of aids that help a person travel, communicate with others, learn, work, and participate in social and recreational activities. An example of an assistive technology can be anything from a low-tech device, such as a magnifying glass, to a high tech device, such as a special computer that talks and helps someone communicate. Other examples are wheelchairs, walkers, and scooters, which are mobility aids that can be used by persons with physical disabilities.

School

In order to help a child fully participate in school, plans can be developed around the child’s specific needs. These plans, known as 504 plans, are used by general education students not eligible for special education services. By law, children may be eligible to have a 504 plan which lists accommodations related to a child’s disability. The 504 plan accommodations may be needed to give the child an opportunity to perform at the same level as their peers. For example, a 504 plan may include your child’s assistive technology needs, such as a tape recorder or keyboard for taking notes and a wheelchair accessible environment.

A different plan is needed for children taking special education classes. An Individual Education Plan (IEP) is a legal document that tells the school its duties to your child.

Transitions

For some people with disabilities and their parents, change can be difficult. Planning ahead of time may make transitions easier for everyone.

Transitions occur at many stages of life. For example, the transition from teen years to adulthood can be especially challenging. There are many important decisions to make, such as deciding whether to go to college, a vocational school, or enter the workforce. It is important to begin thinking about this transition in childhood, so that educational transition plans are put in place. Ideally, transition plans from teen years to adulthood are in place by age 14, but no later than age 16. This makes sure the person has the skills she or he needs to begin the next phase of life. This stage in life also involves transitioning one’s health-care services from pediatricians to physicians who primarily treat adults.

Independent Living

Independent living means that a person lives in her or his own apartment or house and needs limited or no help from outside agencies. The person may not need any assistance or might need help with only complex issues such as managing money, rather than day-to-day living skills. Whether an adult with disabilities continues to live at home or moves out into the community depends in large part on her or his ability to manage everyday tasks with little or no help. For example, can the person clean the house, cook, shop, and pay bills? Is she or he able to use public transportation? Many families prefer to start with some supported living arrangements and move towards increased independence.

Finding Support

For many people with disabilities and those who care for them, daily life may not be easy. Disabilities affect the entire family. Meeting the complex needs of a person with a disability can put families under a great deal of stress. An IEP emotional, financial, and sometimes even physical.

However, finding resources, knowing what to expect, and planning for the future can greatly improve overall quality of life (QOL). If you have a disability or care for someone who does, it might be helpful to talk with other people who can relate to your experience.

Find a Support Network

By finding support within your community, you can learn more about resources available to meet the needs of families and people with disabilities. This can help increase confidence, enhance QOL, and assist in meeting the needs of family members.

A national organization that focuses on the disability, such as Spina Bifida Association (SBA), that has a state or local branch, such as SBA in your state, might exist. State or local area Centers for Independent Living (CILs) could also be helpful. United Way offices may be able to point out resources. Look in the phone book or on the web for phone numbers and addresses.

Other ways to connect with other people include camps, organized activities, and sports for people with disabilities. In addition, there are online support groups and networks for people with many different types of disabilities.

Talk with a Mental-Health Professional

Psychologists, social workers, and counselors can help you deal with the challenges of living with or caring for someone with a disability. Talk to your primary care physician for a referral.

_____________

This chapter contains text excerpted from the following sources: Text in this chapter begins with the excerpts from Disability and Health Overview, National Center on Birth Defects and Developmental Disabilities (NCBDDD), Centers for Disease Control and Prevention (CDC), September 16, 2020; Text under the heading Disability and Health Information for People with Disabilities is excerpted from Disability and Health Information for People with Disabilities, National Center on Birth Defects and Developmental Disabilities (NCBDDD), Centers for Disease Control and Prevention (CDC), September 16, 2020.

Chapter 2 | Statistics on People with Disabilities in the United States

What Is Disability and Health Data System?

Disability and Health Data System (DHDS) is an online source of state-level data on adults with disabilities. Users can access information on six functional disability types:

Cognitive (serious difficulty concentrating, remembering or making decisions)

Hearing (serious difficulty hearing or deafness)

Mobility (serious difficulty walking or climbing stairs)

Vision (serious difficulty seeing or blindness)

Self-care (difficulty dressing or bathing)

Independent living (difficulty doing errands alone)

Data on more than 30 health topics among adults with or without disabilities can be explored in DHDS, including smoking, obesity, heart disease, and diabetes.

Users can customize data maps, charts, and tables, making it easy to see information about their state or region. They can identify health differences between adults with and without disabilities overall, and by age, sex, and race/ethnicity. Data can be used in presentations, reports, grant applications, or to inform decision-makers.

Figure 2.1. Percentage of Adults with Disability in United States

You can use DHDS to answer questions, such as:

What is the percentage of adults with disabilities in each state?

What is the percentage of adults with select functional disability types in each state?

How does the percentage of adults with disabilities vary by age, sex, and race/ethnicity in each state?

How does the state percentage compare with the national percentage? With percentages in neighboring states?

Does the percentage of adults with key health indicators, such as obesity, physical activity and smoking vary across different functional disability types? Among adults with and without disabilities?

Disability Impacts All of Us

About 61 million adults in the United States live with a disability and 26 percent (1 in 4) of adults in the United States have some type of disability. The percentage of people living with disabilities is highest in the South as shown in Figure 2.1.

Percentage of Adults with Functional Disability Types

13.7 percent of people with a disability have a mobility disability with serious difficulty walking or climbing stairs.

10.8 percent of people with a disability have a cognition disability with serious difficulty concentrating, remembering or making decisions.

6.8 percent of people with a disability have an independent living disability with difficulty doing errands alone.

5.9 percent of people with a disability are deaf or have serious difficulty hearing

4.6 percent of people with a disability have a vision disability with blindness or serious difficulty seeing even when wearing glasses.

3.6 percent of people with a disability have a self-care disability with difficulty dressing or bathing.

Disability and Communities

Disability is especially common in the following groups, older adults, women and as shown in Figure 2.2.

2 in 5 adults age 65 years and older have a disability

1 in 4 women have a disability

2 in 5 non-Hispanic American Indians/Alaska Natives have a disability

Disability and Health

Figure 2.3 shows adults living with disabilities are more likely to be obese, smoke, have heart disease and diabetes:

38.2 percent of adults with a disability are obese while 26.2 percent of adults without a disability are obese.

28.2 percent of adults with a disability smoke while 13.4 percent of adults without a disability smoke.

11.5 percent of adults with a disability have heart disease while 3.8 percent of adults without a disability have heart disease.

16.3 percent of adults with a disability have diabetes while 7.2 percent of adults with a disability have diabetes.

Figure 2.2. Disability and Communities

Figure 2.3. Statistical Information of Disability and Health

Disability and Health-Care Access

Figure 2.4 shows health-care access barriers for working-age adults include:

1 in 3 adults with disabilities 18–44 years do not have a usual health-care provider

Figure 2.4. Disability and Health-Care Access

1 in 3 adults with disabilities 18–44 years have an unmet health-care need because of cost in the past year

1 in 4 adults with disabilities 45–64 years did not have a routine checkup in the past year

_____________

This chapter contains text excerpted from the following sources: Text under the heading What Is Disability and Health Data System? is excerpted from Disability and Health Data System (DHDS) Overview, National Center on Birth Defects and Developmental Disabilities (NCBDDD), Centers for Disease Control and Prevention (CDC), September 16, 2020; Text under the heading Disability Impacts All of Us is excerpted from Disability Impacts All of Us, National Center on Birth Defects and Developmental Disabilities (NCBDDD), Centers for Disease Control and Prevention (CDC), September 16, 2020.

Chapter 3 | Myths and Facts about People with Disabilities

Understanding Disability Myths and Facts

Despite the passage of key civil rights laws such as the Rehabilitation Act and the Americans with Disabilities Act (ADA), many misunderstandings about people with disabilities persist, particularly in the minds of those who have not experienced disability within their own life or in the lives of people around them. Successfully interacting with and serving people with disabilities begins with an understanding that people with disabilities are part of the fabric of the community and share the same societal goals of equality of opportunity, full participation, independent living, and economic self-sufficiency. Table 3.1 highlights several of the most common myths about people with disabilities and the facts that counter these misunderstandings.

Myths about Disability Benefits and Work

There are several common myths about how working will affect disability benefits and health-care coverage. Here are the most common and why they are wrong.

Table 3.1. The Most Common Myths and Facts about People with Disabilities

Table 3.1. Continued

If You Try to Go to Work, You Will Automatically Lose Your Medicare or Medicaid.

This is a myth. First, as long as you keep receiving a benefit check of any amount, you will keep your health insurance. If you earn enough that your Social Security Disability Insurance (SSDI) checks stop, Medicare can continue for up to 93 months. If you currently receive Medicaid, you should be eligible to continue to receive Medicaid even after you stop receiving Supplemental Security Income (SSI) benefits due to work. To be eligible you need to meet certain requirements, which include earnings below a threshold amount set by your state. Even if your earnings exceed the state threshold, you may still be eligible and should talk to your state Medicaid office.

If You Use Your Ticket to Go to Work, Social Security Will Conduct a Medical Review of Your Case, and You Will Lose Your Benefits.

This is also a myth. Social Security ordinarily reviews your medical condition from time to time to see whether you are still disabled, using a process called the medical Continuing Disability Review, or medical CDR. If you participate in the Ticket program with either an Employment Network or your State Vocational Rehabilitation Agency, and make timely progressfollowing your individual work plan, Social Security will not conduct a review of your medical condition. If a medical CDR has already been scheduled for you before you assigned your ticket, Social Security will continue with the medical CDR.

If Your Checks Stop Because You Go to Work and Then You Have to Stop Working Because of Your Disability, You Will Have to Reapply for Benefits All Over Again. It Took You Forever to Be Approved for Benefits and You Cannot Afford to Wait That Long Again. As a Result, You Should Not Try to Work.

Again, it is a myth. You will not need to reapply if your benefits ended within the past five years due to your earnings and you meet a few other requirements, including that you still have the original medical condition or one related to it that prevents you from working. This is a work incentive called expedited reinstatement. You may even be able to receive up to six months of temporary cash benefits in addition to Medicare or Medicaid coverage while SSA conducts a medical review to determine if your benefits can be reinstated.

_____________

This chapter contains text excerpted from the following sources: Text beginning with the heading Understanding Disability Myths and Facts is excerpted from A Guide to Interacting with People Who Have Disabilities, U.S. Department of Homeland Security (DHS), September 26, 2013. Reviewed March 2022. Text under the heading Myths about Disability Benefits and Work is excerpted from Debunking the Three Biggest Myths about Disability Benefits and Work, U.S. Social Security Administration (SSA), October 27, 2021.

Chapter 4 | Communicating with and about People with Disabilities

Using Appropriate Language

People with disabilities are people first. They are not defined by their conditions or diseases. Lack of awareness about disabilities can lead to unintended stereotypes and discrimination. The way you view and communicate with and about people with disabilities shapes your relationships. The way you refer to people with disabilities in your communication is important.

Refer to the explanations in Table 4.1 for a listing of appropriate terms and examples of how to apply these terms. Note that not all people with disabilities use the same terminology and that different terms may be preferred in some circles and not in others. Begin by using the generally accepted terms below and then respect the individual’s terminology preferences, if different.

Tips for Effective Interactions

The following section provides information regarding appropriate communications and behaviors when interacting with people who have disabilities. The first portion presents general tips that apply to all people with disabilities, and this is followed by tips geared to interactions with specific groups of individuals with disabilities.

Table 4.1. Terminology and That Different Terms

Table 4.1. Continued

General Tips

When talking to a person with a disability, look at and speak directly to that person, rather than their companion.

Be considerate of people’s service animals. Some people who have disabilities may use a service animal. Do not pet or play with the animal as this activity may unsettle the person and may interrupt the animal from doing its assistive duties.

Avoid assuming the preferences and needs of people with disabilities. People with disabilities are individuals and thus have individual preferences and needs. Therefore, if you have the impression that a person needs help, ask the person if, and then how, you may be of assistance. Communicate clearly and comprehensibly. As with all communication, an effective message is one that is spoken and/or written clearly and comprehensibly. This point is extremely important for people with disabilities who may have difficulty obtaining or comprehending messages. Be sure to convey your message in an understandable form and in multiple ways if necessary.

If you do not need to know about the specific nature of someone’s disability, do not ask about their disability. Your focus should be on what the person is communicating to you.

In your conversation, relax. Do not be embarrassed if you happen to use accepted common expressions such as See you later or Got to be running along that seem to relate to the person’s disability. Do not be afraid to ask questions when you are unsure of how to assist the person.

Person Who Has a Hearing Disability

When a sign language interpreter is present, look at and speak to the person who is deaf, not the interpreter, when communicating.

To get the attention of a person who is deaf or hard of hearing, tap the person on the arm, wave your hand, or, in a large group, flicker the lights.

Look directly at the person and speak clearly, naturally, and slowly to establish whether the person can speechread. Not all persons who are deaf can speechread. Those who can rely on facial expression and other body language to help in understanding.

Show consideration by placing yourself under or near a light source and keeping your hands and food away from your mouth when speaking. Shouting will not help.

Offer to the person a means of exchanging written messages to see if that would be helpful to facilitate the communication process.

When gathered as a group, speak one at a time. This is especially true if sign language interpreters are being used but also holds true for someone with limited hearing who is trying to follow the conversation on their own.

Person Who Has a Vision Disability

Greet the person verbally to let them know that you have approached them. Identify yourself and others who may be with you. Speak normally, but facing the person.

Do not grab the person’s arm or cane assuming they need assistance. Ask first if they need assistance.

Offer to assist the person to reach their destination. Offer your arm as a guide just above the elbow and describe any obstacles in the path of travel. When arriving at the destination, tell the person that they are standing in front of the chair, the table, the doorway, etc. It is appropriate to guide the person’s hand to the chair or railing for additional assistance in orienting them.

If the person has a guide dog, walk on the side opposite the dog and do not touch or distract the dog at any time.

When conversing in a group, give a vocal cue by announcing the name of the person to whom you are speaking.

Indicate in advance when you will be moving from one place to another, and let it be known when the conversation is at an end.

Person Who Has a Speech Disability

Listen attentively. Keep your manner encouraging rather than correcting. Exercise patience rather than attempting to speak for a person with a speech disability.

Never pretend to understand if you are having difficulty doing so. Repeat what you understand, or incorporate the person’s statements into the follow-up questions. The person’s reactions will guide you.

When necessary, ask short questions that require short answers or a nod or a shake of the head.

Person Who Has a Mobility Disability

When talking at length to a person who uses a wheelchair or crutches, sit in a chair, whenever possible, in order to put yourself at the person’s eye level to facilitate conversation.

Do not speak loudly and slowly to an individual in a wheelchair unless you know that doing so is necessary to communicate.

Be considerate of people’s assistive equipment. Some people with disabilities may use various equipment (e.g., canes, wheelchairs, speech synthesizers) for assistance. Do not touch or operate the equipment without the owner’s prior consent or instructions, as such behavior is disrespectful and shows careless regard for the owner’s personal property or space.

When introduced to a person with a disability, it is appropriate to offer to shake hands. People with limited hand use or who wear an artificial limb can usually shake hands. (Shaking hands with the left hand is an acceptable greeting.)

Treat adults as adults. Address people who have disabilities by their first names only when extending the same familiarity to all others. Never patronize people who use wheelchairs by patting them on the head or shoulder.

Person with an Intellectual or Developmental Disability

Speak directly to the person and respect their expressed preferences as to choices or decisions.

For some individuals, if you are in a public area with many distractions, consider moving to a quiet or private location.

Be aware of the possible need to speak to the person in clear and short sentences. Repeat your information and your questions, as needed. Use concrete words and visual aids or color-based cues.

It may be helpful to offer assistance completing forms or understanding written instructions, and provide extra time for decision-making. Wait for the individual to accept the offer of assistance; do not over-assist or be patronizing.

Be patient, flexible, and supportive. Take time to understand the individual and verify that the individual understands you.

Person with a Nonapparent Disability

A person’s disability may not be readily apparent. For example, people with brain injury, epilepsy, mental illness, autism, or developmental disability are often misunderstood because their behaviors or ways of communicating may appear unusual.

Be cautious about interpreting behavior. For example, the actions of people with cerebral palsy or epilepsy have been mistaken for drunkenness.

What seems like unusual behavior could be the result of the person’s hearing loss, or it could be the person’s lack of understanding or fear.

Allow extra time for the person to process what you are saying and to respond.

Be very cautious about seeking the assistance of the person’s companion, caregiver, or personal assistant. While this individual may be able to assist you with communication and interpreting the person’s meaning and/or responding to behaviors, it is easy to make an incorrect assumption and fail to communicate directly with the individual.

_____________

This chapter includes text excerpted from A Guide to Interacting with People Who Have Disabilities, U.S. Department of Homeland Security (DHS), September 26, 2013. Reviewed March 2022.

Chapter 5 | Childhood Disability

Childhood disability is any mental or physical impairment that causes functional limitations and restricts a child from doing everyday activities. As disabilities can be congenital, developed after birth, or caused by injury, they can affect a child’s vision, hearing, movement, thinking, remembering, learning, communicating, mental health, and social relationships.

Children with a disability may have special needs in health and education. They would need to fully overcome social and environmental barriers to participate in everyday life.

Congenital Disorder

A congenital disorder is a condition that exists from the time a baby is born. It can either be hereditary or caused by environmental factors. Common genetic diseases include:

Autism. Autism, also known as autism spectrum disorder, (ASD) is a neurodevelopmental disorder characterized by difficulties with communication and behavior. It is challenging to identify autism before two years of age. However, it can be diagnosed in some children around 18 months.

Intellectual disability. This term limits a child’s ability to learn at an expected level and function in daily life.

Down syndrome. A genetic condition otherwise called trisomy 21 causes intellectual disability and other physical challenges.

Cerebral palsy. This is a physical disability that affects body movements due to a lack of oxygen to the baby’s brain during pregnancy.

Fragile X syndrome. It is a hereditary condition that leads to intellectual disability and learning and behavior problems.

Disability Developed after Birth

Disability can also develop after birth in some cases and can lead to

Heart problems

Hearing problems

Blood, metabolism, and hormone disorders

Early detection of these problems can prevent the child from developing more serious physical, intellectual, visual, or hearing disabilities.

Disabilities Caused by Injury

Traumatic brain injuries (TBI) can result in physical, mental, and behavioral disabilities. Some accidents can cause severe physical injuries, such as spinal cord injury or the loss of a limb that leads to disability. Other causes of brain injury include loss of oxygen, infection such as meningitis, and stroke.

Tips for Parents of Children with Disabilities

Become an expert. Parents should try to understand their child’s condition. Information can be gathered from websites, journals, and medical practitioners. Suitable support programs and care centers for your child should be sought, as you can find professionals who can advise you on your child’s unique needs. Apart from the support programs and care centers, family associations are essential to provide moral support.

Be a good friend. Parents must learn to speak freely to their children and interact with them usually by asking their opinions and needs.

Contacting the child’s school. Working closely with your child’s education or child-care provider is one of the best ways to ensure they receive their support.

Consider animal therapy. Petting an animal will give your child a sense of happiness and companionship. Caretaking a pet can develop responsibility and empathy and provide an opportunity to show unconditional love.

References

Ten Tips for Parenting Children with Special Needs, ParentMap, September 29, 2017.

Tips for Parents of Children with Disabilities, Sunrise Medical, March 6, 2018.

What Is a Childhood Disability? Pregnancy, Birth, and Baby, June 2021.

_____________

Childhood Disability, © 2022 Infobase. Reviewed March 2022.

Chapter 6 | Women with Disabilities

About 36 million women in the United States have disabilities—and the number is growing. About 44 percent of those aged 65 years or older are living with a disability. The most common cause of disability for women is arthritis or rheumatism.

Women with disabilities may need specialty care to address their individual needs. In addition, they need the same general healthcare as women without disabilities, and they may also need additional care to address their specific needs. However, research has shown that many women with disabilities may not receive regular health screenings within recommended guidelines.

Breast Cancer Screening: The Right To Know

Breast cancer is a major public-health concern for all women, including women with disabilities. Women who have disabilities are just as likely as women without disabilities to have ever received a mammogram. However, they are significantly less likely to have been screened within the recommended guidelines. The Centers for Disease Control and Prevention (CDC) has developed a family of health promotion materials (e.g., posters, MP3 files, low-tech fliers, print advertisements, and tip sheets) to increase awareness of breast cancer among women with physical disabilities and encourage these women to get screened. Materials share the tagline Breast Cancer Screening: The Right To Know and feature four women with physical disabilities who have survived breast cancer.

Cervical Cancer Screening

Cervical cancer is the easiest female cancer to prevent, with regular screening tests and follow-up. It also is highly curable when found and treated early. All women are at risk for cervical cancer, including women with disabilities. It occurs most often in women over age 30. It is important to get tested for cervical cancer because 6 out of 10 cervical cancers occur in women who have never received a Pap test or have not been tested in the past 5 years.

Healthy Living

People with disabilities need healthcare and health programs for the same reasons anyone else does—to stay well, active, and a part of the community.

Having a disability does not mean a person cannot be healthy. Being healthy means the same thing for all of us—getting and staying in good physical, mental, and emotional health so we can lead full, active lives. That means having the tools and information to make healthy choices and knowing how to prevent illness.

Intimate Partner Violence

About 1 in 4 women have experienced contact sexual violence, physical violence, and/or stalking by an intimate partner during their lifetime. Research has shown that women with a disability are more likely to experience intimate partner violence (IPV) than those without a disability. In fact, researchers found that, compared to women without a disability, women with a disability were significantly more likely to report experiencing each form of IPV measured, which includes rape, sexual violence other than rape, physical violence, stalking, psychological aggression, and control of reproductive or sexual health.

_____________

This chapter includes text excerpted from Disability and Health Information for Women with Disabilities, National Center on Birth Defects and Developmental Disabilities (NCBDDD), Centers for Disease Control and Prevention (CDC), September 16, 2020.

Chapter 7 | Aging and Disabilities

According to the World Health Organization (WHO), healthy aging is defined as: developing and maintaining the functional ability that enables wellbeing in older age. Genetics, lifestyle, and environmental factors have a significant role in the aging progress of a person’s life. The several stages of life development are:

A gradual inclination in performance (from infancy to adolescence)

A plateau form that occurs throughout adulthood

A deterioration in physiological abilities when a person gets older

Genetic factors (about 25 percent) and lifestyle and environmental factors (about 75 percent) determine this decline’s rate, quantity, and quality. Consequently, it could lead to diseases, disorders, functional limitations, and disability.

Physical and Mental Changes

Muscle Strength

Postural alignment and muscle strength play a significant role in the effective functioning of the body in older adults. Loss of muscle strength has been reported in people as young as 50–59. It includes reduced muscle mass, loss of bone density and can be compounded by physical inactivity. Recommending older adults to take bed rest for days or weeks due to an illness or injury may decline the muscle strength faster. Muscle strength loses at twice the rate it takes to regain. Reduction in muscle mass leads to an increased rate of disability.

Bones and Joints

Wear and tear at the joints are also associated with aging due to loss of joint fluid. It is almost inevitable with aging, and osteoarthritis is one of all elders who experience conditions. The intervertebral disks lose water, flatten, and undergo other harmful changes that lead to disk height loss and spinal column compression.

Behavioral Risk Factors

Some of the leading behavioral risk factors of adults are:

Excessive consumption of alcohol

Low levels of physical activity

Smoking

Poor diet

Slower reaction and reduced problem-solving abilities are few recognizable cognitive changes in older adults. Mental-health ­challenges, such as depression, anxiety, and dementia, affect one out of every four older adults. They are linked to poor health outcomes, such as more significant disability and sickness and a lower quality of life.

Disabilities in Older People

Aging and disabilities are related to difficulty with:

Mobility

Walking

Moving in and out of bed

Climbing stairs

Self-Care

Eating

Toileting

Bathing

Dressing

Regular Activities

Meal preparation

Food shopping

Using telephone

Taking medication

Money management

Household chores

Driving

Relationship between Aging and Disability

Disability-related secondary conditions. People with disabilities are more likely to develop secondary infections, either directly or indirectly, similar to those that aging people experience in general. Still, they occur 20–25 years earlier and are often premature.

Age-related conditions. These conditions are the long-term consequences of exposure to environmental risks and the effects of poor health behavior experienced by aging persons and by aging people with disabilities. High cholesterol, gait and mobility challenges, skin disease, and dementia are examples of these conditions.

Multiple chronic conditions. The possibility of having two or more chronic illnesses at the same time, either in dyads (hypertension and diabetes) or triads (hypertension, cholesterol, and diabetes)

Coping with Aging

For Individuals

Individuals can smoothly go through the aging process by taking the following steps.

Moderate exercising every day can help stay active and maintain a positive mood

Maintaining a healthy lifestyle such as plenty of sleep, limiting alcohol consumption, and adjusting accordingly for changes in your function (e.g., hearing, vision, flexibility, or strength)

Seeking assistance when feeling depressed or anxious

Updating oneself about new developments in the arts, politics, sciences, and other areas of cultural and social interest

For Family Members

Providing healthcare at home. It can be done by finding care providers who can make home visits or telehealth appointments and making a hospital setting at home. The members may be both formal and informal but make sure to participate in the services for the older person to feel comfortable.

Choice of care. Informing all the available options allows the older adult to choose the type of care they receive and when and where to receive it.

Learning better ways to communicate. Tools and resources are available online to teach family members how to communicate with older adults receiving treatment at home mindfully.

Social inclusion. Isolation is one of the major causes of emotional distress for older people. So, creating opportunities for older adults to participate in family gatherings and community activities may boost their mood and mental stability.

References

Aging and Disabilities, Physiopedia, September 28, 2021.

Haseltine, William A. Top 10 Tips for Caring for Older Adults, Forbes Media LLC, January 10, 2020.

Knott, Laurence. Disability in Older People, Egton Medical Information Systems (EMIS) Limited, January 10, 2022.

Older Adults, American Psychological Association (APA), September 2021.

_____________

Aging and Disability, © 2022 Infobase. Reviewed March 2022.

Chapter 8 | A Guide for Caregivers of People with Disabilities

If you are a family member who cares for someone with a disability, whether a child or an adult, combining personal, caregiving, and everyday needs can be challenging.

Caregiving Tips for Families of People with Disabilities

These general caregiving tips provide families with information on how to stay healthy and positive. Keep in mind that these tips can be used to address many family issues. Information, support, advocacy, empowerment, care, and balance can be the foundation for a healthy family and are appropriate no matter what the challenge.

Be Informed

Gather information about your family member’s condition, and discuss issues with others involved in the care of your family member. Being informed will help you make more knowledgeable health decisions and improve your understanding about any challenges your family might face.

Notice how others care for the person with special needs. Be aware of signs of mental or physical abuse.

Get Support

Family members and friends can provide support in a variety of ways and oftentimes want to help. Determine if there are big or small things they can do to assist you and your family.

Join a local or online support group. A support group can give you the chance to share information and connect with people who are going through similar experiences. A support group may help combat the isolation and fear you may experience as a caregiver.

Do not limit your involvement to support groups and associations that focus on a particular need or disability. There are also local and national groups that provide services, recreation, and information for people with disabilities.

Friends, family, health-care providers, support groups, community services, and counselors are just a few of the people available to help you and your family.

Be an Advocate

Be an advocate for your family member with a disability. Caregivers who are effective advocates may be more successful at getting better service.

Ask questions. For example, if your family member with a disability uses a wheelchair and you want to plan a beach vacation, find out if the beaches are accessible via a car, ramp, portable walkway mat, or other equipment.

Inform other caregivers of any special conditions or circumstances. For example, if your family member with a disability has a latex allergy, remind dental or medical staff each time you visit them.

Document the medical history of your family member with a disability, and keep this information current.

Make sure your employer understands your circumstances and limitations. Discuss your ability to travel or to work weekends or evenings. Arrange for flexible scheduling when needed.

Become familiar with the Americans with