Disability, Health, and How We Can Better Care for Patients with Functional Impairments Nathaniel Gleason, MD Associate Professor of Clinical Medicine Division of General Internal Medicine
Objectives • Cultural competencies, accommodations, and adaptive strategies - Visual impairments - Mobility Impairments - Deaf and Hard-of-Hearing
Objectives • Challenges commonly encountered by people with disabilities in clinical care • New understanding of prevalence • Disparities in care • What can disability advocates teach us about our broader patient population?
I Self-identify as “disabled” — a spectrum d e n t i fi O e s f t a e s n a k p n e o r w s o s n m w o r i t e h t a h a d n i s w a b e i l C i d t y h o . r . o n i c f d u i n s e c a t i s o e n w a l i t i m h p a n a i r e m v o e l n v t i n . g U D n a e w c l a i n r e i n / g U f u n n a c c t k i o n n o . w l e d g e d .
Self-identify as “disabled” — a spectrum S p i n a l c o F r u d l l i i n n j d u e r y p e a n t d a e g n e c 2 e 0 B i l a t e r a F l r k u n s e t r e a O t i n A g . a E t n a g g a e g e 7 d 0 . U n a w a r i e m / p u a n i r a m c k e n n o t w a n l e d d f g a e l l d r g i s a k i t
Cultural Competency is a good fi t for those who self-identify “People with disabilities do have a distinctive culture, founded on their shared history of discrimination and common experiences of stigmatization, poverty, social isolation, lack of self determination” –Woodard, Havercamp, Zwgart & Perkins (2012)
Blindness and Visual Impairment
The “sighted-guide” technique
The “sighted-guide” technique
Cultural Competencies Announce yourself • Announce your departure • The group conversation • Be precise with directions • - The clock face Announce physical contact •
Getting to know your patient • Blind does not mean total loss of vision • “Legal blindness” tells us fairly little - 20/200 or fi eld < 20 degrees • Method of reading? • Orientation and mobility?
Adaptive strategies for reading • Digital Magni fi cation • Closed circuit television (CCTV) • Adaptive computer software • Large print • Audio - Bookshare
Adaptive strategies for “Orientation and Mobility”
Orientation and Mobility “The white cane tells me everything I need to know about my surroundings.” “It represents independence.” “A signi fi er that does the explaining”
Language • Evolving - Handicap - Disabled - People with disabilities - Visually impaired, low-vision, legally blind partially sighted, totally blind
Mobility Impairments
Cultural Competencies • A wheelchair is considered personal space • Place yourself at the patient’s eye level when talking for more than a moment. • Is a transfer to the exam table necessary?
Language • Wheelchair bound • Con fi ned to a wheelchair • Wheelchair user • Mobility
The Deaf and Hard of Hearing
Getting to know your patient • Age at onset • Educational history - Understanding of written English • Cultural identi fi cation - Raised with ASL? • Preferred communication modality
Clinical Accommodations • Reduce background noise • Face the person • Speak naturally but clearly. Don’t shout or exaggerate • Ask the patient how best to communicate • If an interpreter is used, talk to the deaf person, not to the interpreter
Adaptive Strategies and Devices • TTY (teletypewriter) systems - Relay operator — dial 711 • Email / Text messaging • Video calls • Video ASL Interpreters
Language • Hearing impaired • Hard of hearing • Deaf with a capital D • Disabled?
Common Themes • Is the patient’s disability relevant to the visit? • Omissions ‣ Drugs ‣ Sex ‣ Employment
2011 HHS standard for de fi ning disability in public health surveys Deaf or serious di ffi culty in hearing • Blind or serious di ffi culty in seeing, even when wearing • glasses Serious di ffi culty walking or climbing stairs • Di ffi culty dressing or bathing • Because of a physical, mental, or emotional condition, • do you have serious di ffi culty in concentrating, remembering, or • making decisions di ffi culty doing errands alone such as visiting a • doctor’s o ffi ce or shopping
Disability Pathology Impairment Disability Functional Limits Decreased Macular Can’t read Can’t read visual acuity degeneration small type Rx on bottle Disability is a complex interaction between the health condition of the individual and the contextual factors of the environment. -WHO
Figure 1. Disability Prevalence by Age : 1997 (Percent with specified level of disability) Any disability Severe disability Age 7.8 Under 15 years 3.8 10.7 15 to 24 5.3 13.4 25 to 44 8.1 22.6 45 to 54 13.9 35.7 55 to 64 24.2 44.9 65 to 69 30.7 46.6 70 to 74 28.3 57.7 75 to 79 38.0 80 years 73.6 and over 57.6 Source: U.S. Census Bureau, 1996 Survey of Income and Program Participation: August - November 1997.
Walker DK,et al. Persons With Disabilities as an Unrecognized Health Disparity Population. Am J Public Health. 2015;105(S2):S198-S206
Functional Impairment: age 50-64 Health and Retirement Study • Patients 50-56 at enrollment with no ADL or iADL • limitations (n=6874) Interviewed every 2 years through age 64 • 46% women, 80% white, strati fi ed by SES, • 29% HTN, 25% OA, 16% depression
Cumulative incidence of fi rst ADL impairment Brown RT, Diaz-Ramirez LG, Boscardin WJ, Lee SJ, Steinman MA. Functional Impairment and Decline in Middle Age: A Cohort Study. Ann Intern Med. 2017;167(11):761-768
Cumulative incidence of fi rst ADL impairment Brown RT, Diaz-Ramirez LG, Boscardin WJ, Lee SJ, Steinman MA. Functional Impairment and Decline in Middle Age: A Cohort Study. Ann Intern Med. 2017;167(11):761-768
Cumulative incidence of fi rst i ADL impairment Brown RT, Diaz-Ramirez LG, Boscardin WJ, Lee SJ, Steinman MA. Functional Impairment and Decline in Middle Age: A Cohort Study. Ann Intern Med. 2017;167(11):761-768
Disparities in Care 77% of adults with disabilities describe • physical or program barriers that limited access to local health programs 47% experienced delays in primary and • preventive care Increased susceptibility to secondary • health problems Poorer health outcomes • Important intersection with poverty • National Health Interview Survey (NHIS), CDC, 2011
Minkler et al, Gradient of Disability across the Socioeconomic Spectrum in the United States. NEJM. 2006
Strongest predictors of ADL impairment Low income • Stroke • Arthritis • Chronic medical conditions • Sensory impairment • Depression • Obesity • Infrequent physical activity • Lack of health insurance • Residence in a neighborhood with fair or poor safety. • Brown RT, et al, Functional Impairment and Decline in Middle Age
I d e n t i fi O e s f t a e s n a k p n e o r w s o s n m w o r i t e h t a h a d n i s w a b e i l C i d t y h o . r . o n i c f d u i n s e c a t i s o e n w a l i t i m h p a n a i r e m v o e l n v t i n . g U D n a e w c l a i n r e i n / g U f u n n a c c t k i o n n o . w l e d g e d .
“The real problem of blindness is not the loss of eyesight. The real problem is the misunderstanding and lack of information that exist. If a blind person has proper training and opportunity, blindness can be reduced to a physical nuisance.” -National Federation of the Blind
Visual Impairment: re-approaching the patient with evolving vision loss
Visual Impairment: re-approaching the patient with evolving vision loss focus on • - reading - orientation & mobility Tools: magni fi cation, large print, • audio, adaptive software Resources: • - Lighthouse for the Blind - Independent living skills centers
Re-approaching the patient with loss of mobility
Screening “Timed Up and Go” (TUG) Test a. rise from chair b. walk 10 feet c. turn around d. return to seated position >12 seconds = risk of falls
Mobility Aids • Improve safety • Decrease pain • Decrease energy expenditure • Restore independence
Canes Standard cane Offset cane Quad cane
Proper fi tting of canes & walkers • Align with the wrist crease (with arm relaxed at side), wearing typical shoes • Elbow fl exed 15-30 degrees while walking
Social stigma & mobility aids • Reframe the issue - Describe the aids as tools - “increased mobility” - “maximize potential” • Not all or nothing.
Medi-Cal study of 2389 primary care facilities in 2010 Mudrick, et al. Physical accessibility in primary health care settings: Disability and Health Journal � 2012 5, 159-167
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