Issues People With Disabilities Face in the Healthcare System

As an unrecognized health disparity population, persons with disabilities face many barriers to good health in comparison to their non-disabled counterparts. People with significant disabilities represent more than 12% of the U.S. population. Adults with disabilities are four times more likely to report fair or poor health than adults with no disabilities and are 2.5 times more likely to report skipping or delaying health care because of cost. People with disabilities have higher rates of chronic diseases than the general population, consistently report higher rates of lack of mobility and physical activity, and are significantly less likely to receive preventative care.

Health information for people with disabilities and healthcare providers needs to address the preventable problems and secondary conditions such as pain, fatigue, obesity, and depression that can occur as a result of a disabling condition. Those wishing to build a better awareness of communicative and physical barriers to access in healthcare should look into:

• Understanding the transportation difficulties and inaccessibility of healthcare facilities and equipment.
• Acknowledging the lack of knowledge among health professionals and leaning into the importance of emotional intelligence and the necessary soft skills needed for proper healthcare.
• Understanding the higher rates of poverty among people with disabilities.
• Learning to create diversity and inclusion in healthcare spaces.
• Overcoming transcultural language barriers for nurses and for other healthcare providers.
• Engaging in active listening and building patient relationships to provide care catered to the individual needs of patients.

Chronic Illness Conditions and Medical Disabilities

Medical disabilities may occur due to chronic illness and related health conditions. Many medical conditions qualify as disability claims with the Social Security Administration. Chronic diseases that may cause temporary or permanent disability may include:

• Arthritis.
• Asthma, cystic fibrosis, and other respiratory illnesses.
• Blood disorders such as sickle cell disease or hemophilia.
• Cancer.
• Chronic Fatigue Syndrome.
• Diabetes.
• Heart disease and cardiovascular conditions.
• Liver disease.
• Mental disorders such as depression, anxiety, schizophrenia, and intellectual disabilities.
• Musculoskeletal disorders
• Neurological disorders such as multiple sclerosis, cerebral palsy, Parkinson’s disease, and epilepsy.

Care and Accommodations

Patient barriers to chronic disease management care may include:

• Managing medication costs that are critical to improving health.
• A lack of resources such as time or technology.
• A lack of fostering strong relationships to enhance patient engagement with health care providers.

Providing patient-centered chronic disease care for populations at risk for health care disparities may include:

• Communication strategies that are tailored to vulnerable populations, which can include: creating social networks of care, utilizing technology and tools such as text messaging, and meeting the challenges of cultural and linguistic barriers.
• Customized care plans that are tailored specifically to the conditions, treatments, economic conditions, and behaviors of the patient.
• Team-based care such as multidisciplinary teams for treating complex symptoms and conditions.

Sensory and Communication Disabilities

Nearly 1 in 6 Americans will experience a sensory or communication disability in their lifetime. Sensory and communication disabilities (CD) may occur at birth or be the result of trauma and injury. Speech and communication disorders affect the ability to speak and communicate and range from minor disorders to complete inability to form or understand speech. People with sensory disabilities may experience a disability or impairment of the senses of sight, hearing, smell, touches, and taste. Sensory and communication disabilities may include:

• Low vision and blindness.
• Hearing disabilities and deafness.
• Speech disorders.
• Language disorders.
• Autistic spectrum disorder (ASD).
• Sensory processing disorder.
• Traumatic Brain Injuries.
• ADHD.

Care and Accommodations

Research shows that adults with communication disabilities experience poorer health and healthcare outcomes compared to persons without communication disabilities. Poor patient-provider communication is a major contributing factor to lower levels of satisfaction of provided healthcare. Additionally, people with disabilities experience greater difficulties accessing healthcare and finding a physician. Because of high costs, people with disabilities may delay or forgo preventative healthcare, prescription medications, mental healthcare, dental care, eyeglasses, specialists, and follow up care.

Patients also reported difficulty scheduling appointments, waiting too long to get an appointment or at the doctor’s office, clinics not being open when the patient was available, and not having access to transportation to the clinic. Patients with CD also reported secondary conditions such as stroke, emphysema, asthma, cardiovascular disease, and diabetes more than those without.

A study on the impact of patient communication problems and the risk of preventable adverse events in acute care settings shows that those with CD experience a decrease in quality of care and an increased risk of preventable adverse events, including drug errors and poor clinical management. The study also noted that patients with physical and sensory disabilities such as deafness or blindness face considerable barriers and lack of tools and resources when communicating with healthcare professionals.

Section 1557 of the Patient Protection and Affordable Care Act paragraph (a)(2) mandates that hospitals and clinics provide patients with disabilities auxiliary aids and services free of charge and in a timely manner to ensure equitable access to communication during healthcare. Clinical and health providers should also take into account clinical encounters with people with CD and sensory disabilities that may take longer due to communication barriers and chronic conditions. These providers may need to schedule accordingly with extra time, tools, and strategies, to meet the needs of their patients.

Other dimensions that concern people with physical and sensory disabilities that can be accommodated in medical settings include facilitating physical access for persons with special sensory and physical requirements. This may include user-friendly physical spaces with accessible furnishings and equipment. Using appropriate communication strategies might include writing down key words while speaking and having tools such as braille and large print materials or electronic communication devices. Health insurance often inadequately covers items or services required by people with disabilities and clinicians may require additional time with patients to develop and discover alternative approaches that meet the patient’s needs.

Mental Health Conditions

Mental health conditions affect a person’s thinking, feeling, behavior, and mood, and may impact day-to-day living as well as a person’s ability to regulate interpersonal behaviors and relate to others. Research shows that causes of mental health conditions may be interlinked and include: stress, nutrition, perinatal infections, genetics, environment, exposure to environmental hazards, and lifestyle. While mental health conditions may carry stigmas, they are quite common. According to the National Alliance on Mental Illness, in the U.S.:

• 1 in 5 adults experiences mental illness each year.
• 1 in 25 adults experience serious mental illness each year.
• Of youth aged 6-17, 1 in 6 experience a mental health disorder each year.
• 50% of all lifetime mental illness begins by the age of 14.
• 75% of all lifetime mental illness begins by the age of 24.

Mental health conditions may include:

• Anxiety disorders.
• Attention deficit hyperactivity disorder (ADHD).
• Bipolar disorder.
• Borderline personality disorder.
• Dementia.
• Depression.
• Developmental disorders, including autism.
• Dissociative disorders.
• Eating disorders.
• Obsessive-compulsive disorder.
• Posttraumatic stress disorder.
• Psychosis.
• Schizoaffective disorder.
• Schizophrenia.
• Substance-use conditions.

Care and Accommodations

Treatments, care, and accommodations for mental disorders may include therapy medicine, counseling, social support such as group discussion and activities, and education on managing conditions.

The World Health Organization notes that between 76% and 85% of people with mental health disorders in low and middle-income countries receive no treatment for their disorder. Studies reveal that lack of access is a root cause of the health crisis in the United States. Mental health services in the U.S. are insufficient to support the 6 in 10 Americans seeking help for mental health conditions. The continuing disparities in access to mental and physical health care may include:

• Limited options and long waits for those seeking treatment.
• Lack of awareness of treatment options, or difficulty finding mental health providers in health insurance networks.
• Social stigma — nearly one-third of Americans fear the judgment of seeking mental health services.
• High rates of denial of care by insurers.
• High out-of-pocket cost.
• Difficulty accessing medications.

Increased accommodation for improving the quality of health care for mental and substance-use conditions may include:

• Incorporating patient-centered decision making and active patient participation in design, revision, treatment, and recovery plans.
• Adopting recovery-oriented and illness self-management practices that support patient preferences for treatment and medications, peer support, and other elements of wellness plans.
• Organizing effective collaboration or links with community resources to support patient illness self-management and recovery.
• Removal of barriers to and restrictions on effective treatments from copayments, service exclusions benefit limits, and other coverage policies.

Mobility Impairments and Disabilities

Conditions that may result in mobility impairments or disabilities include:

• Amputation.
• Paralysis.
• Cerebral palsy,
• Stroke.
• Multiple sclerosis.
• Muscular dystrophy.
• Arthritis.
• Spinal cord injuries.
• Spina Bifida.
• Heart defects.

Mobility disabilities can be temporary or permanent and may result in the impact of fine motor abilities or may require the use of mobility aids, such as canes, walkers, wheelchairs, crutches, or prosthetics.

Care and Accommodations

Increasing access to medical care for individuals with mobility disabilities includes removing barriers that reduce access to routine medical care. The Americans with Disabilities Act of 1990 (ADA) prohibits discrimination against individuals with disabilities in not only daily activities but also includes access to medical services.

Medical care providers and facilities must not only provide full and equal access to their health care services and facilities in terms of increasing the physical accessibility of health care facilities; this includes accessible doors and entryways, clear floors, and turning space, but must also make reasonable modifications to policies, practices, training, and procedures to ensure that necessary healthcare services are available to persons with disabilities. Accommodations may include trained staff and assistance to enable the individual to receive proper medical care, accessible medical equipment, and increased time for examinations and appointments to ensure proper care is received.

Cognitive, Intellectual, and Learning Disabilities

Cognitive, intellectual, and learning disabilities include a broad range of disabilities and may not always be well defined. A person with a cognitive disability may experience difficulty participating in a variety of mental, physical, or learning tasks. Many cognitive disabilities have a foundation in a person’s biology, chemistry, or physiology. They can be the result of traumatic brain injuries and genetic disorders.

Persons with cognitive, intellectual, or learning disabilities may experience a range of variances in day-to-day functions and mental capabilities, though many individuals with cognitive or developmental disabilities do not have limited intellectual functions. Clinical diagnosis for cognitive and developmental disabilities as well as learning disabilities may include:

• Autism.
• Aphasia.
• Cerebral palsy.
• Epilepsy.
• Down syndrome.
• Brain or spinal injury.
• Dementia.
• Attention deficit hyperactivity disorder.
• Dyslexia.
• Dyscalculia.
• Dysgraphia.
• Oral or written language disorder.
• Non-verbal learning disabilities.

Care and Accommodations

Studies focused on discrimination and barriers to accessing healthcare needs for people with intellectual disabilities found that people with disabilities receive unfair or discriminatory treatment in healthcare settings such as:

• Negative attitudes and behavior of healthcare staff towards patients with intellectual disabilities.
• Failures to make reasonable adjustments to the needs of the patient.
• Problems with communication and accessing services because of a lack of knowledge of local health services.
• Eligibility issues with health care services.
• Communication difficulties resulting from individuals with intellectual disabilities being excluded from consultations.
• Failure of General Practitioners to conduct health reviews, reviewing medication, conducting blood tests, and investigations.
• Lack of health promotion and general health screening.
• Inadequate knowledge of doctors about the health needs of people with intellectual disabilities that contributes to diagnostic overshadowing and leading to delayed diagnosis and treatments of health issues.
• Denial of basic needs such as lack of support during meal times or toileting.
• Problems with the administration of medication.
• Lack of support offered to caretakers.
• Disregard for information provided by caretakers.
• Language miscommunications and problems with patients from minority groups.

Accommodations to create accessible healthcare for people with cognitive, intellectual, learning, and developmental disabilities may take a comprehensive approach to medical care that includes:

• Communicating directly with patients when possible.
• Being patient and asking if the person understands, repeating information until the person can verify their understanding.
• Using diagrams, plain language, demonstrations, signboards, and pictures to improve communication.
• Increasing appointment length to accommodate communication needs.
• Reducing wait times for appointments.
• Digital or home visit appointments.
• Changes to the sensory environment such as eliminating strong scents, loud sounds, turning off televisions, and reducing light.

Patient Advocacy

A professional patient advocate, sometimes called a “patient navigator,” works with members of the medical care team to coordinate a patient’s care. Healthcare facilities may use social workers, nurses, or chaplains to advocate for patients. A patient advocate may work from a community-based organization, work independently as a freelancer, or work for an insurance company. Patient advocates may:

• Specialize in a specific medical field or disease area.
• Focus on health insurance claims and billing.
• Coordinate care among multiple providers.
• Accompany patients to medical appointments and/or sit with them in the hospital.

Patient Advocates For People With Disabilities

A healthcare advocate can work to protect individuals with disabilities by advocating on their behalf.  Disability advocates can:

• Get qualified Social Security Disability claims approved, or help file a Request for Reconsideration.
• Represent an individual with a disability at a hearing before an Administrative Law Judge.
• Ensure people with disabilities are able to exercise their rights.
• Support the patient’s choice of medical care and medication.
• Provide information, referrals, and knowledge of community programs or alternative choices.
• Coordinate care between providers and schedule appointments.
• Raise public awareness of the legal and social issues of people with disabilities.

Nurses as Patient Advocates

There are many roles that current or aspiring nurses can play in improving care for patients with disabilities, as well as expanding access to adequate care. Registered nurses, family nurse practitioners, and advanced practice nurse practitioners are all stakeholders who can influence the quality of care and the culture of the healthcare system. Not only do nurses provide direct care, but they have the opportunity to take on the role of patient advocates. Nurses can act as patient advocates by helping patients make informed or ethical decisions, translate medical terminology into common language, and navigate complex medical systems. Oftentimes, a nurse is the foremost and closest health provider to a patient and can protect their rights, health, and safety by upholding patient equality, making patients a priority, and being a reliable resource.

A study on patient advocacy from the clinical nurse’s viewpoint found that patient advocacy for nurses consisted of both developing empathy for the patient, as well as protecting them. Advocacy for patients is an ideal in nursing practice, yet aspects of it have failed to be identified, making it necessary for nurses to receive training and higher education as nurse educators and in faculty roles, or to pursue positions of clinical leadership through a doctoral nursing program.

How to Be Your Own Health Advocate

Becoming your own health advocate can help you to play an essential role in your own healthcare. When patients become empowered, they become more involved in the decision-making process and have greater control over their own bodies. Becoming your own advocate may include:

• Understanding how insurance and billing works.
• Reviewing medical bills for errors.
• Asking questions and writing everything down.
• Maintaining your own records.
• Checking the hospital’s version of your medical records for accuracy.
• Seeking second opinions when necessary.
• Taking advantage of free preventive services under the Affordable Care Act.

How to Remove Health Care Barriers for People With Disabilities

Barriers to healthcare for people with disabilities may include an inaccessible physical environment, a lack of information and/or communication technology, legislation, policy, and gaps in insurance coverage, and most importantly, social attitudes and discrimination. Raising public awareness of legal, social, and economic issues for people with disabilities can help to mitigate discrimination, increase economic access, ensure rights are protected, and facilitate necessary changes to legislation and policy.

People with disabilities may also experience discrimination from healthcare workers and professionals who lack the training to provide proper healthcare to people with disabilities. A study showed that attitudes of healthcare students and professionals toward patients with physical disabilities were generally positive, some healthcare providers felt fear and anxiety towards the challenge of providing care for a patient with disabilities. The study further noted that targeted educational interventions could help alleviate fear and facilitate higher quality care.

Resources

There are resources and organizations available to people with disabilities that can improve the health and welfare of their lives, as well as the outcome of their medical experiences.

• • The American Association of People with Disabilities (AAPD): The AAPD provides advocacy in legislation to improve the lives of people with disabilities by increasing their political and economic power. The organizations also supports education access, independent living, economic self-sufficiency, equal opportunity, and the right to quality, comprehensive, and affordable healthcare.
  • The Association of Programs for Rural Independent Living (APRIL): APRIL acts as a center of information and resources dedicated to advancing the rights and responsibilities of people with disabilities living in rural areas. Their efforts may include rural transportation, youth, and peer learning.
  • The Association of University Centers on Disabilities (AUCD): The AUCD is a membership organization that supports and promotes a national network of university-based interdisciplinary programs. The AUCD supports the national network by bringing together resources and providing leadership, advocacy, and networking.

• Autistic Self Advocacy Network (ASAN): ASAN works to advance the principles of the disability rights movement in regard to autism, where people with autism enjoy equal access, rights, and opportunities. The organization works to advocate for public policy, and provide information about autism and disability rights.

• • The Consortium for Citizens With Disabilities (CCD): The CCD is a coalition of national organizations that work together to advocate for issues concerning people with disabilities. This may include legislation, education, financial security, employment and training, healthcare, housing, and more.

• Disability Rights Education and Defense Fund (DREDF): The DREDF is a national civil rights law and policy center that is focused on advancing the civil and human rights of people with disabilities through legal advocacy training, education, and public policy legislative development. 

• ADvancing States: Formerly known as the National Association of State Units on Aging, Advancing states represent U.S. states and territory agencies on aging, disability, long-term services, and supports directors and caregivers. The organization collaborates with disability networks at a national level and advocates for state agencies at the congressional and executive levels. ADvancing States also works to inform states with high quality, non-partisan, and timely information.
• The National Organization on Disability: The NOD is a non-profit organization that works to increase employment opportunities for people with disabilities.
• TASH: Tash is an international organization that is a leader in disability, human rights, and inclusion advocacy. The organization works to advance inclusive communities through advocacy, research, professional development, policy, and information and resources for parents, families, and self-advocates.
• The National Council on Independent Living: The NCIL is a grassroots organization run by and for people with disabilities that advocate for the human and civil rights of people with disabilities. The organization embodies the values of disability culture and independent living, emphasizing that people with disabilities are the best experts on their own needs.

State Protection and Advocacy Systems (P&As): P&As empower and advocate on behalf of people with disabilities to fight for the personal and civil rights of individuals, provide legal support to underserved populations, and help people with disabilities navigate the legal system to achieve resolution and the right to make choices.