National Call: Disparities Affecting People with Disabilities

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