Disability Awareness ForFuture Health Care Providers GEORGE CHANG CHIEN WESTERN UNIVERSITY OF HEALTH SCIENCES COLLEGE OF OSTEOPATHIC MEDICINE NATIONAL DISABILITIES COORDINATOR AMERICAN MEDICAL STUDENT ASSOCIATION
Topics to study • What is disability? • Barriers to care • Invisible Disabilities due to Rheumatologic Diseases • Disability myths and culture • Psychology of disability • Access to care • Primary care • Pediatric Rehabilitation • Independent Living • Chronic disease and disability, what is the role of rehabilitation medicine? • Disability health policy, what’s next?
learning objectives • Student will be able to identify the challenges that were encountered in the disability rights movement. • describe common myths about disability, and why are they false. • Recognize the importance of People First Language, and be comfortable using PFL. • Identify health concerns that a primary care provider should be aware of when working with patients with disabilities. • recognize that chronic disease, and chronic pain are a form of disability.
Learning objectives • identify psychological co-morbidities of disability. • Recognize the prevalence of psychological comorbidity in your patients with disability. • student will be able to describe the role of advocacy in patient centered care.
“the disabled” Medical construct Vs. Social construct
Examples of Disability Stigma from Asia • Karmic retribution • Sinful • Contagious • A tragedy • Useless • Pitiable • Weak • Stigma as Social death
By the numbers In 2002, nearly 1 in 5 Americans said they had some level of disability, while 1 in 8 -- 33 million -- reported they had a severe disability. Steinmetz E. Americans with disabilities: 2002. Current population reports. Washington, DC: US Census Bureau; 2006. Available at http://www.census.gov/prod/2006pubs/p70-107.pdf.
Growing population There are over 54 million people with diagnosed disabilities in the United States today. This population is the fastest growing demographic in this country.
What is a disability? Disability: a condition caused by an accident, trauma, genetics or disease, which can affect or limit a person’s ability. • A disability can be visible such as a spinal cord injury necessitating wheel chair use, or invisible, such as diabetes, heart disease, epilepsy, hearing loss, mental retardation, or a learning disability. • Nearly everyone will be affected by disability. Most people, if they live long enough will age into disability.
Impairment Any loss or abnormality of body structure, or of a physiological or psychological function.
Wait, what is disability? • Different kinds of disability • born with disability • get sick • accident • some people develop a disability as they age • Most persons with disability are just as healthy as people who don’t have disabilities. • However, for a variety of reasons they are at greater risk for illness. Surgeon General Richard H. Carmona, M.D., M.P.H., FACSU.S. Department of Health and Human Services. The Surgeon General’s Call to Action to Improve the Health and Wellness of Persons with Disabilities. U.S. Department of Health and Human Services, Office of the Surgeon General, 2005.
What then, is a handicap? • A Handicap is a barrier or obstacle • PEOPLE ARE NOT HANDICAPPED BY THEIR DISABILITY AT ALL TIMES. • A wheelchair user is not handicapped in an environment where there are no steps. • A disability can mean that a person may do something differently than a person without a disability, but with equal participation and equal results.
When does a disability become a handicap? • Environment • Negative attitudes Environment and attitudes cause the handicap that limits participation, productivity, integration, independence, and equality
Impairment – disability -- handicap Impairment: Retinitis pigmentosa Disability: sensory, (vision) Handicap: living in a building that does not have signs in Braille People who are blind are not handicapped in jobs where they use computers with screen readers (voice input) and in buildings where signs are designated with Braille.
The Disability Rights Movement “ Whatever the social setting and whatever the disability, people with disabilities share a common experience of social oppression.” - Paul Longmore, historian Photo: WHO
Disability Rights Movement • Inspired by African American and Women Civil Rights movements. • Rights could only be secured through collective political action. • Rehabilitation Act of 1973 • Individuals with Disabilities Education Act of 1975 • Americans with Disabilities Act of 1990
Americans with Disabilites Act of 1990 Until the passage of the ADA, there were no federal protections against discrimination in the private sector for people with disabilities. Even the Civil Rights Act of 1964 did not cover people with disabilities. IT IS ONLY 19 YEARS OLD!
Myth 1 a: a usually traditional story of ostensibly historical events that serves to unfold part of the world view of a people or explain a practice, belief, or natural phenomenon b:parable, allegory 2 a: a popular belief or tradition that has grown up around something or someone; especially: one embodying the ideals and institutions of a society or segment of society <seduced by the American myth of individualism — Orde Coombs> b: an unfounded or false notion 3: a person or thing having only an imaginary or unverifiable existence • (http://www.merriam-webster.com/dictionary/myth)
Disability myths and culture • Having a disability means you cannot be healthy • Wheelchair use is confining; users of wheelchairs are "wheelchair-bound.“ • The lives of people with disabilities are totally different than those of non-disabled people. • People with disabilities do not have sex
Other Myths • A person with a disability is sick or has something wrong with them • People with disabilities have a poor quality of life • Source: the access center; http://www.acils.com/acil/myths.html
Myths • People with disabilities are inspirational, brave, and courageous for living successfully with their disability • People with disabilities always need expensive and high-tech assistive devices or services • Source: the access center; http://www.acils.com/acil/myths.html
More Myths • People with disabilities are intrinsically different from the “normal” population • Persons with disabilities are taken care of quite comfortably by government social services • Source: reach canada http://reach.ca.understanding/myths.htm
Language “Words can inform our mind, caress and comfort our feelings, excite and thrill our spirit, or warm and kindle the flame of our hearts. They can also slap our face, punch us in the stomach, rattle our nerves, kill our desire, or destroy our self-confidence. Of course this is metaphorical, but these metaphors capture in words our physical reactions to what is said, and that is the power of language. It can emotionally move and affect us as powerfully as physical actions.” (Toomey, 1999)
Examples of the evolution of language • Outdated: Handicapped, Physically Challenged, "Special," Deformed, Cripple, Gimp, Spastic, Spaz, Wheelchair-bound, Lame • Respectful: Wheelchair user, Physically disabled, Person with a mobility or physical disability • Outdated: Retard, Mentally retarded, "Special ed“ • Respectful:Cognitively/Developmentally disabled, Person with a cognitive/developmental disability http://www.miusa.org/ncde/tipsheets/respect/ 2006
Examples of the evolution of language • Outdated: Dwarf, Midget • Respectful: Someone of short stature, Little Person • Outdated: Victim, Someone "stricken with" a disability (i.e. "someone stricken with cancer" or "an AIDS victim") • Respectful: Survivor, Someone "living with" a specific disability (i.e. "someone living with cancer or AIDS") • http://www.miusa.org/ncde/tipsheets/respect/ 2006
Language and respect • Use the term "disability," and take the following terms out of your vocabulary when talking about or talking to people with disabilities. Don't use the terms "handicapped," "differently-abled," "cripple," "crippled," "victim," "retarded," "stricken," "poor," "unfortunate," or "special needs." • When talking about people without disabilities, it is okay to say "people without disabilities." But do not refer to them as "normal" or "healthy." These terms can make people with disabilities feel as though there is something wrong with them and that they are "abnormal." • When in doubt, call a person with a disability by his/her name. • http://www.miusa.org/ncde/tipsheets/respect/
Invisible Disabilities Ankylosing spondylitis Rheumatoid arthritis Congestive heart disease Mental retardation Can you think of other disabilities?
Psychology of disability How can disability impact a person? Aging with disability Co-morbidities Substance abuse Caregiver issues Family
Substance abuse Smoking There is a high prevalence of substance abuse in people with disabilities • Alcohol
Assistive Technology Assistive Technology (AT) is a generic term that includes assistive, adaptive, and rehabilitative devices AT promotes greater independence for people with disabilities by enabling them to perform tasks that they were formerly unable to accomplish, or had great difficulty accomplishing “A day in the life of Richard Devylder”
Access and Barriers to Care Breast Cancer screening - mammograms Colon Cancer - colonoscopies Prostate Cancer - Digital rectal exam, PSA follow up Dental? Exercise? Environmental? Attitudes? Prejudice? Society’s attitudes are often the greatest barrier to the inclusion of people with disabilities. In spite of significant cultural changes, negative stereotypes still exist.
Primary care People living with long-term with disabilities are at increased risk for “secondary conditions,” defined as preventable physical, mental, and social disorders resulting directly or indirectly from an initial disabling condition. What should every PCP know about disability? The Centers for Disease Control and Prevention in their Healthy People 2010 Report targeted prevention of secondary conditions as a major component of health promotion for people with disabilities.
Comorbidities • Pressure Sores • Substance abuse • Bladder care and management • Heart disease • Diabetes This list continues… depending on the type of disability Do you only see the wheelchair?
Pediatric Rehabilitation Cerebral palsy Developmental disabilities Congenital diseases Spina bifida Muscular dystrophy Photo: courtesy of Cleveland clinic
Independent Living What does “independent living” mean, and why is it important? Self directed Community based Access Living, Chicago drop-off ramps at curbside and the outside sidewalk ease movement. The doorway had to be automatic and at street-level.
Chronic disease and disabilityRole of Rehabilitation Medicine What is the role of rehabilitation? How does PT/OT/ST/RT affect functional outcomes? How does chronic disease contribute to disability? When should a consult be made to a physiatrist? Who are the other team members? Neuropsychology Social work Orthotist/prosthetist rehab nursing
Medical curriculum Does your medical curriculum prepare you for your future patients with disabilities? How will you be a future advocate for your patients with disabilities, and what can you take back to your home school?