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Caring for People Living with Chronic Illness and Disability

Caring for People Living with Chronic Illness and Disability. Alicia M. Conill, M.D., FACP Clinical Associate Professor, Dept. of Medicine University of Pennsylvania CEO, Conill Institute for Chronic Illness 215-746-7267 drconill@conillinst.org.

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Caring for People Living with Chronic Illness and Disability

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  1. Caring for People Living with Chronic Illness and Disability Alicia M. Conill, M.D., FACP Clinical Associate Professor, Dept. of Medicine University of Pennsylvania CEO, Conill Institute for Chronic Illness 215-746-7267 drconill@conillinst.org

  2. WHY IS THIS IMPORTANT?WHO DOES IT AFFECT?WHAT DO YOU NEED TO KNOW?

  3. THE NUMBERS • ALMOST 100 MILLION PEOPLE IN THE US HAVE ONE OR MORE CHRONIC CONDITIONS • PEOPLE ARE LIVING LONGER WITH CHRONIC ILLNESS THAN EVER BEFORE • CHRONIC CONDITIONS COST THE ECONOMY OVER $250 BILLION ANNUALLY IN DIRECT MEDICAL COSTS AND LOST PRODUCTIVITY

  4. 20% OF THE POPULATION HAS SOME LEVEL OF DISABILITY (54 MILLION) THIS NUMBER INCLUDES MENTAL AND PHYSICAL DISABILITIES • HALF (27 MILLION) HAVE A DISABILITY which interferes with 1 or more ADLs (activities of daily living: basic ADLs include bathing, feeding, dressing, toileting, transferring) • A WORD ABOUT SENSORY DISABILITIES, HIDDEN DISABILITIES, MENTAL DISABILITIES

  5. FAMILY, FRIENDS, NEIGHBORS, COWORKERS • Some statistics on caregiver burnout • Often first line of support • 1 in 4 Americans provides support • Higher incidence of illness in caregivers than general population • 60% of employed caregivers report it interferes with their work

  6. “There are only four kinds of people in this world:Those who have been caregivers.Those who currently are caregivers.Those who will be caregivers.Those who will need caregivers.” Rosalynn Carter: Helping Yourself Help Others: A Book for Caregivers. (1994)

  7. REVIEW OF BASIC DEFINITIONS • ACUTE VS. CHRONIC • DISEASE VS. ILLNESS • IMPAIRMENT VS. DISABILITY • DISABILITY VS. HANDICAP

  8. PHYSICAL DOMAIN COMMUNICATION DOMAIN (speech, hearing, vision) MENTAL DOMAIN Congenital OR Acquired Disease process OR Accident How is disability defined?

  9. Who defines disability? • Social Security Administration • Americans with disabilities act (ADA) • World Health Organization (WHO)

  10. DISCLOSURE DEFIANCE DISCOMFORT DENIAL DIAGNOSIS DESPAIR The Cycles of Chronic Illness

  11. The Evolution of a Disability Culture • Equal Opportunities • Equal Access • Equal Protection

  12. Education and Awareness created by the Disability Culture • Language: the power of words • Challenged stereotypes • Replaced Myths, biases and assumptions with realities

  13. Clarification of common misconceptions about People with Disabilities • They are NOT all courageous, strong and nice • They are NOT all on disability • They do NOT all have limited or absent sexual desires and responses • They CAN and often do become sick due to illnesses unrelated to the primary cause of their disability • They do NOT all resent your offers to help them open a heavy door or carry packages to their car in the parking lot

  14. THE LAW • Section 504, the Rehabilitation Act (1973) • The Americans with Disabilities Act (1990) • President Clinton’s Executive Order on Employment of People with Disabilities (1998) • Congressional Act passed assuring continued Medicare/Medicaid health insurance coverage for people with disabilities who re-enter the workforce (1999)

  15. The Americans with Disabilities Act (ADA) • Any individual with a disability is protected from discrimination in much the same way that we prohibit discrimination on the basis of race or gender • This includes provision of reasonable accommodations for the person with a disability to continue their employment

  16. ADDITIONAL DETAILS OF THE ADA • Notethe disability may be real or perceived by the public as real • Notefamily members of the disabled are similarly protected against discrimination on the basis of their loved one's disability • NoteIndividuals with alcohol dependency or drug dependency are protected

  17. 1) DO NOT PARK HERE 2) DO NOT LET YOUR FRIENDS/FAMILY PARK HERE 3) NOT EVEN “FOR A MINUTE” 4) TAGS & PLACARDS ARE NOT TO BE PASSED ON TO ABLE-BODIED SURVIVORS 5) THESE RULES APPLY TO HANDICAPPED BATHROOM STALLS ALSO

  18. Rationale & FAQ Disability experience

  19. Increase your own knowledge of the culture, diversity and challenges of people living with a disability Understand the cyclical nature of adaptation to disability or chronic illness Identify your own bias, stereotypes and assumptions Educate others Advocate for those unable to do so for themselves Empower those who can WHAT YOU CAN DO

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