Above photo: Al Nowakowski.
Outline: Disparities Affecting People with Disabilities
Health Over Profit, July 24, 2017
Anne Scheetz, MD, annescheetz@gmail.com. Please contact me if you have questions, or want additional information including links to people with disabilities describing the problems they face and their activism.
Background
About 18% of the US population has a disability, according to the 2010 Census.
People with disabilities are less likely to work and more likely to be unemployed (looking for work) than people without disabilities; and are poorer than people without disabilities.
Every other source of disadvantage compounds the disadvantage of disability
Almost all of us will experience one or more periods of disability during our lifetime, thus the term “temporarily able.”
Medical versus social models of disability
People with disabilities in our current health care system
Health insurance
Medicare has complex rules for eligibility for people under age 65; people with disabilities experience higher cost burdens
VA: complex rules about who qualifies for what
Employer-sponsored health insurance: cost-shifting to patients creates large burden
Medicaid: requires severe poverty; yearly redetermination; nationally 75% of enrollees are now in managed care
Uninsured: especially undocumented immigrants
All kinds of insurance: cost-shifting, narrow provider networks, pre-authorization requirements, non-covered services are most harmful to those with the greatest and most complex health care needs
Care settings determined by business/profit considerations, not by clinical appropriateness
Services that may not be covered at all, are covered inadequately, or are made unavailable through administrative barriers: hearing services and hearing aids; physical, occupational, and speech therapy; complex durable medical equipment (DME); DME repairs; routine dental services under anesthesia; lightweight mobile oxygen equipment; in-home needs assessments; prosthetic limbs; communication devices; disposable gloves; urinary catheters and tubing; dressings; eyeglasses; etc.
Institutionalization
Lack of community support services forces people into nursing homes
Understaffing is the norm for institutions serving people on Medicaid and people of color
People who have lived in nursing homes call them prisons: “I’d rather go to jail than die in a nursing home.”
Lack of mental health care results in people living with mental illness getting involved with the police and being incarcerated
Physical and navigation barriers
Exam room doors too narrow for wheelchairs; scales, mammography not accessible for people in wheelchairs; lack of people and equipment for safe transfer between wheelchair and exam table; lack of ASL interpreters; etc.
Stigma, lack of respect
National improved Medicare for all is a necessary but not sufficient condition for eliminating inequities experienced by people with disabilities.
What a single-payer system will do:
All services will be covered for every resident of the US: no determination of eligibility, no non-covered services; no denials, pre-approvals
People with disabilities will not have to choose between remaining poor enough to qualify for Medicaid and being impoverished by out of pocket costs
Free choice of providers
Instead of health care arranged around generating profits for corporations, health system planning aims to assess people’s needs and meet them
Provide all care in a single system without regard to the cause of illness or injury (eliminate separate workers’ comp system which acts to deny care)
- From Section 203 of HR 676, the Expanded and Improved Medicare for All Act:(d) Favoring Non-Institutional Care- All efforts shall be made under this Act to provide long-term care in a home- or community-based setting, as opposed to institutional care.
What single-payer will not accomplish automatically, but can advance
Abolish stigma
Provide people with disabilities with jobs, housing, and adequate community supports
Listen to and learn from people with disabilities themselves
Summary:
A health care system that serves well people with disabilities will serve all of us well.
“Everybody in, nobody out” plus “Nothing about us without us”: the foundations of a health care system that truly serves people.
References: Disparities affecting people with disabilities, and single-payer health care
Background
US Census data here: https://www.census.gov/newsroom/releases/archives/miscellaneous/cb12-134.html
US Census data here; https://www.census.gov/newsroom/cspan/disability/20120726_cspan_disability_slides.pdf
Bureau of Labor Statistics report on people with disabilities here; https://www.bls.gov/news.release/disabl.nr0.htm
Disability as a cause and consequence of poverty here; https://talkpoverty.org/2014/09/19/disability-cause-consequence-poverty/
Medical and social models of disability here; http://www.disabilitynottinghamshire.org.uk/about/social-model-vs-medical-model-of-disability/
Ed. Jonathan Metzl and Anna Kirkland, Against Health: How Health Became the New Morality. Some of the essays discuss medical and social models of disability.
Health insurance
Wellness programs here; https://www.aclu.org/blog/speak-freely/people-disabilities-who-opt-out-voluntary-wellness-programs-will-pay-price-and
Kaiser Family Foundation report on Medicare for people under age 65 here; http://www.kff.org/medicare/issue-brief/medicares-role-for-people-under-age-65-with-disabilities/
Report on dishonorable discharges from military for mental health diagnosis here: http://thehill.com/policy/defense/333667-watchdog-report-thousands-discharged-for-misconduct-had-mental-health
Republican attacks on Medicaid here; http://kff.org/medicaid/issue-brief/medicaid-restructuring-under-the-american-health-care-act-and-nonelderly-adults-with-disabilities/?hsCtaTracking=1844d941-933f-4ed5-b392-e7df596eef35%7Ce8c63711-d257-4163-9737-9eaeaa5d0368&eid=46150826&utm_campaign=KFF-
Medicaid managed care enrollment here; http://www.kff.org/medicaid/state-indicator/total-medicaid-mc-enrollment/?currentTimeframe=0&sortModel=%7B%22colId%22:%22Location%22,%22sort%22:%22asc%22%7D
Medical deportations here; http://www.immigrationresearch-info.org/report/seton-hall-university-school-law/discharge-deportation-and-dangerous-journeys-study-practice-
Workers’ comp here; http://foxvalleylabornews.com/2016/10/07/troubled-workers-comp-system-shows-need-for-single-payer-health-care/
Institutionalization
Racial disparities in Chicago nursing homes (article no longer available on source website), here; http://www.chicagoreporter.com/news/2013/01/notorious-nursing-homes
Story about transition from a nursing home here; https://www.accessliving.org/138JK98
Incarceration of people with mental illness here; http://chicagoreporter.com/for-many-with-mental-illness-its-arrest-incarcerate-release-repeat/
Disparities
Canadian patients with cystic fibrosis live longer than their US counterparts, here; http://annals.org/aim/article/2609289/survival-comparison-patients-cystic-fibrosis-canada-united-states-population-based
Racial and ethnic disparities in access to mental health care, here; http://journals.sagepub.com/doi/abs/10.1177/0020731416662736
Barriers
Physical and navigation barriers to health care here; http://www.nationalacademies.org/hmd/~/media/Files/Activity%20Files/SelectPops/HealthDisparities/2016-JUN-14/Aarup%20and%20Wilson%20Presentation.pdf
The Implicit Bias Test includes a section on people with disabilities, here; https://implicit.harvard.edu/implicit/takeatest.html
Other resources, by people with disabilities:
Website of the disability rights organization ADAPT here; http://adapt.org/
Americans with Disabilities Act (ADA), signed into law July 26, 1990, here, https://adata.org/learn-about-ada
Ed. Jennifer Bartlett, Sheila Black, Michael Northen, Beauty Is a Verb: The New Poetry of Disability
James Charlton, Nothing About Us Without Us: Disability Oppression and Empowerment
Eli Clare, Brilliant Imperfection: Grappling With Cure
Disability Integration Act (DIA), ADAPT’s current legislative focus here; http://www.disabilityintegrationact.org/
ASL poem “The Rosebush” by Ella Mae Lentz here; https://www.youtube.com/watch?v=W9biUSeHRlo
Dancer Kris Lenzo here; https://3arts.org/artist/kris-lenzo/
Susan Nussbaum, Good Kings, Bad Kings; prize-winning novel
Dancer Alice Sheppard here; https://www.youtube.com/watch?v=c-qfZA1V7Yo
