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Leslie Francis, "Making “Meaningful Access” Meaningful: Equitable Healthcare for Divisive Times"

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June 1, 2018

Historically and across societies people with disabilities have been stigmatized and excluded from social opportunities on a variety of culturally specific grounds. These justifications include assertions that people with disabilities are biologically defective, less than capable, costly, suffering, or fundamentally inappropriate for social inclusion. Rethinking the idea of disability so as to detach being disabled from inescapable disadvantage has been considered a key to twenty-first century reconstruction of how disablement is best understood.

Such ‘destigmatizing’ has prompted hot contestation about disability. Bioethicists in the ‘destigmatizing’ camp have lined up to present non-normative accounts, ranging from modest to audacious, that characterize disablement as “mere difference” or in other neutral terms. The arguments for their approach range from applications of standards for epistemic justice to insights provided by evolutionary biology. Conversely, other bioethicists vehemently reject such non-normative or “mere difference” accounts, arguing instead for a “bad difference” stance. “Bad difference” proponents contend that our strongest intuitions make us weigh disability negatively. Furthermore, they warn, destigmatizing disability could be dangerous because social support for medical programs that prevent or cure disability is predicated on disability’s being a condition that it is rational to avoid. Construing disability as normatively neutral thus could undermine the premises for resource support, access priorities, and cultural mores on which the practice of medicine depends.

The “mere difference” vs. “bad difference” debate can have serious implications for legal and policy treatment of disability, and shape strategies for allocating and accessing health care. For example, the framing of disability impacts the implementation of the Americans with Disabilities Act, Section 1557 of the Affordable Care Act, and other legal tools designed to address discrimination. The characterization of disability also has health care allocation and accessibility ramifications, such as the treatment of preexisting condition preclusions in health insurance. The aim of this conference was to construct a twenty-first century conception of disablement that resolves the tension about whether being disabled is merely neutral or must be bad, examines and articulates the clinical, philosophical, and practical implications of that determination, and attempts to integrate these conclusions into medical and legal practices.

Learn more: http://petrieflom.law.harvard.edu/events/details/2018-petrie-flom-center-annual-conference

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Leslie Francis, "Making “Meaningful Access” Meaningful: Equitable Healthcare for Divisive Times"

  1. 1. Making “Meaningful Access” Meaningful: Equitable Healthcare for Divisive Times Leslie Francis, University of Utah Anita Silvers, San Francisco State University
  2. 2. Goals (in 15) • Distinguish accommodation and modification as ways to address discrimination • Excavate the confusion between accommodation and modification in the Rehabilitation Act, Southeastern Community College v. Davis , and Alexander v. Choate • Put the distinction to work, using two illustrations from health care • auxiliary aids • Medicaid benefits
  3. 3. Disability Civil Rights: Achieving Meaningful Access • Unbolt the door: then what? • Further barriers • Disparate treatment • Disparate impact • Alexander v. Choate: 14 days in the hospital for all, max, whatever your condition or circumstances • Cold comfort to the 27.4% of people with disabilities using hospital services who needed more than 14 days—and to the 7.8% of non- disabled patients with similarly extended needs • Two ways to unbolt the door: accommodation or modification
  4. 4. Accommodation • Individual adjustments for people who are otherwise eligible or qualified and who would face further barriers without accommodation • Enables individuals who are otherwise eligible or qualified, but non- standard, to succeed in a job, receive a public service, or enjoy a public accommodation • Term used in Title I of the ADA • Designed to correct injustice to or exclusion of the individual, but • Adjustments for some may impose costs on others (e.g. if a worker receives a light duty assignment as an accommodation and another worker has to do more of the heavy lifting)—hence, an undue hardship defense • May be the source of resentment if perceived as unfair privileging; has been characterized by the Court as ”affirmative action”
  5. 5. Modification • Changes in policies, practices, or the built environment required to make the open door reality for people with disabilities • Applies generally, rather than creating individual adjustments • Term used in Title II, Title III, of the ADA • Designed to correct structures that have a disparate and exclusionary impact on people with disabilities, but • May be met with the objection that it is a change in the kind of service or program that is being offered • Or the objection that it introduces new forms of injustice
  6. 6. To illustrate • Accommodation • Modification
  7. 7. Rehabilitation Act § 504 • "[n]o otherwise qualified individual with a disability . . . shall, solely by reason of her or his disability, be excluded from the participation in, be denied the benefits of, or be subjected to discrimination under any program or activity receiving Federal financial assistance…" • Scope: set by receipt of federal financial assistance, not by whether the entity involved was a public service or a public accommodation, or whether the area of concern was employment, benefits, activities, or other areas • Used ideas of accommodation and modification, without distinguishing
  8. 8. Southeastern Community College v. Davis: accommodation construed as modification • Initial major decision by the Court under the Rehab Act • Applicant for nursing school, hearing impaired. Qualified in that she had been admitted to preparatory program, performed well academically; issue initially litigated was whether her qualifications should be evaluated apart from her impairment or with her impairment • But case eventually did not turn on this issue; instead turned on analyzing an accommodation as a modification • School refused outright to consider accommodations, saying it would be too expensive and inconvenient • Instead, construed her request as for a modification of the nursing program so that it would not include clinical training which, the school claimed, she could not do without the accommodations they had refused to consider
  9. 9. In the words of the Court • "Respondent contends nevertheless that § 504, properly interpreted, compels Southeastern to undertake affirmative action that would dispense with the need for effective oral communication." • Further, to require "affirmative action" would exceed what Congress had intended in enacting the Rehabilitation Act: "the language and structure of the Rehabilitation Act of 1973 reflect a recognition by Congress of the distinction between the evenhanded treatment of qualified handicapped persons and affirmative efforts to overcome the disabilities caused by handicaps." • This analysis takes her as requesting a change in the program—a change that the Court found easy to criticize--rather than challenging the College’s refusal to consider auxiliary aids • Also of note, this analysis draws on cases from the employment context, not the context of public accommodations or public services
  10. 10. And next, Alexander v. Choate, modification construed as accommodation • Plaintiffs challenged Tennessee’s cutback to 14 of hospital days paid annually by Medicaid • Court accepted disparate impact theory under the Rehabilitation Act • But held that nevertheless the differences did not discriminate against people with disabilities. • Here, modification is analyzed as individual accommodation: • According to the Court, the plaintiffs’ request was to “guarantee that each recipient will receive that level of health care precisely tailored to his or her particular needs.” • This would be affirmative action: seeing the health care needs of people with disabilities as “more important than others and more worthy of cure through government subsidization.” • But consider modification: what the plaintiffs were requesting was reconsideration of whether a 14-day-fits-all policy is most equitable • What accommodation would have been: individuals who need a longer length of stay because they have been disadvantaged by prior discrimination
  11. 11. ADA • Original version: the single template of the Rehab Act; differentiating the titles was a compromise with the business community, especially a small business exemption and an undue hardship defense for employment • Title I (employment discrimination) uses language of accommodations • What adjustments for the individual are reasonable; what do not succeed in enabling the individual to perform capably or impose an undue hardship on the employer • Titles II and III (public services, public accommodations) use the language of modifications • What changes would be fundamental alterations (Title III)? • What are the appropriate requirements for new construction, building remodeling, other alterations in the built environment • What auxiliary aids would be an undue burden (Title III)?
  12. 12. Since the ADAAA (a quick sketch) • Plaintiffs are increasingly surviving motions for summary judgment on whether they qualify as disabled (the primary focus of the ADAAA) • Plaintiffs are continuing to lose on whether they were qualified with or without accommodations and whether their employer had a legitimate nondiscriminatory reason for adverse action • In Title II and Title III cases, plaintiffs are continuing to lose on whether they met essential eligibility requirements or were seeking a fundamental alteration • One explanation for some of these decisions is that accommodations are begin construed as modifications, and the reverse
  13. 13. First example from health care: auxiliary aids and services • Plaintiffs arrive at a health care facility; no interpretation available and they do not understand what they are being told sufficiently to make important decisions about their care • Accommodation: failure to provide individuals with aids that they need to be able to communicate. Under TIII: undue burden defense to auxiliary aids and services, but not for modifications generally • Modification: failure to train staff so that they are able to assess patients’ needs, arrange for appropriate aids for patients • Problem with seeing this as accommodation: what happens if the patients who are not accommodated cannot show that they are likely to use the facility again (no standing)
  14. 14. Second example from health care: Medicaid §1915(c) waiver programs • Allow states to offer home and community based services to eligible recipients who would otherwise be in nursing homes; must be cost neutral to the Medicaid program • Often constructed with eligibility restrictions to constrain costs (e.g. Pa program that would provide attendant care services only to those who were cognitively alert; Washington’s limit to categorically but not medically needy) • State’s defense to challenges: fundamental alteration • Seen as modification: is this a major change in the kind of program being offered? • Seen as accommodation: are the adjustments needed for the individual to get the benefits that others do, or are they too costly?
  15. 15. Conclusion • Importance of distinguishing accommodation and modification as strategies for achieving meaningful access • Courts have mistakenly construed accommodation requests as for broad changes when all that is needed is an adjustment for the individual • Courts have mistakenly construed modification requests as accommodations that guarantee outcomes for particular individuals and thus can be seen as too costly • Remediating barriers beyond the unbolted door requires moving beyond the problematic confusions between accommodations and modifications initiated in decisions under the Rehabilitation Act

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