FROM REPAIR TO INCLUSION

Changing Perspectives on Disability in Health Reform

The inaugural Maxwell J. Mehlman Lecture

Bob Joondeph, JD 1976 (Case Western Reserve)

Prof. Mehlman Posed a Question:

When Do Health Care Decisions Discriminate against Persons with Disabilities?

• Maxwell J. Mehlman, Melvyn R. Durchslag, and Duncan Neuhauser

• Journal of Health Politics, Policy and Law, Vol 22, No. 6, December 1997.

He Predicted:

“Recent interpretations of laws prohibiting discrimination against persons with disabilities indicate that these laws will play a greater role in health care decision making than previously anticipated. … This article addresses decisions in individual cases, treatment policies adopted by health care providers, and coverage programs of third-party payers, both public and private.”

He Noted, In Support of that Prediction:

• The George HW Bush administration rejected Oregon’s Medicaid waiver request in 1991 (seeking to “ration” health care) claiming that it violated the ADA.

• This was curious, because Alexander v. Choate, 469 U.S. 287 [1985], held that a 14 day limit on inpatient Medicaid coverage did not violate the Rehabilitation Act because it was “facially neutral” and did not single out patients with disabilities and created no disparate impact on them.

He Noted, In Support of that Prediction:

• Secretary of HHS, Louis Sullivan, blocked the waiver for three reasons:

• a. Its Priority List for coverage was based, in part, on assessment of “quality of life” of a patient following treatment;

• b. QOL was measured according to attitudes of general population;

• c. Certain treatments (liver transplants for alcoholics, life support of low birth weight infants) were facially discriminatory.

• Oregon was directed to employ “content neutral factors that did not have exclusionary effect” on PWD and did not take disability into account.

He Noted, In Support of that Prediction:

• The Clinton Admin rejected Oregon’s next submission of ranking in which priority was based on relative probability that a patient would be “symptomatic”, “nonsymptomatic” or deceased in 5 years. Quality of life was used to break ties.

• HHS said Oregon could re-rank treatments according to relative medical effectiveness but could not include consideration of changes in individuals’ functional limitations as a result of treatment.

• Oregon could not use any QOL assessment. • HHS finally allowed treatments to be compared on relative

probability that the patient would be alive in five years; ties broken by comparing costs and random selection.

He Then Asked:

•  Can treatment be denied that it “will not be worth it?”

• Can providers and payers take “quality of life” into account?

• Can a payor cover one disabling condition and not others?

Buck v. Bell, 274 U.S. 200 (1927)• 1927: U.S. Supreme Court upheld a Virginia statute

requiring compulsory sterilization of the unfit, including the MR, "for the protection and health of the state.“

• The majority opinion, written by Justice Oliver Wendell Holmes, found that the state interest in a "pure" gene pool outweighed the interest of individuals in their bodily integrity.

• “It is better for all the world, if instead of waiting to execute degenerate offspring for crime, or to let them starve for their imbecility, society can prevent those who are manifestly unfit from continuing their kind. The principle that sustains compulsory vaccination is broad enough to cover cutting the Fallopian tubes… Three generations of imbeciles are enough".

Berlin Monument• NYT, 9-2-14 BERLIN — The

first to be singled out for systematic murder by the Nazis were the mentally ill and intellectually disabled. By the end of World War II, an estimated 300,000 of them had been gassed or starved, their fates hidden by phony death certificates and then largely overlooked among the many atrocities that were to be perpetrated in Nazi Germany in the years to follow.

Constitutional Protections

Due Process/Equal Protection• Level of constitutional scrutiny

• City of Cleburne v. Cleburne Living Center, 473 U.S. 432 (1985)

• Nature of liberty interest• Youngberg v. Romeo, 457 U.S. 307 (1982)• Washington v. Harper, 494 U. S. 210 (1990)• Sell v. United States, 539 U.S. 166 (2003)

• Procedural Due Process• Zinermon v. Burch, 494 U.S. 113 (1990)

City Of Cleburne, (1985)Suspect, Quasi-suspect or Rationally based?

• MR are immutably different but require special expertise.

• Interest of legislators belies “continuing antipathy or prejudice. Government must have “a certain amount of flexibility and freedom from judicial oversight.”

• Legislative response belies political powerlessness.

• If considered a suspect class, then the aged, disabled, mentally ill and infirm will follow.

Statutory Protections

• 1968: Architectural Barriers Act• 1972: Federal Aid Highway Act• 1973: Rehabilitation Act• 1975: Educ for all Handicapped Children Act• 1980: Civ Rts of Institutionalized Persons Act• 1986: Air Carriers Access Act• 1988: Fair Housing Act Amendments• 1990: Americans with Disabilities Act• 1993: Family Leave Medical Act

Rehab Act Applied to Medicaid:Alexander v. Choate, (1985)• Unanimous decision authored by Justice Marshall.

• “…discrimination against the handicapped is primarily the result of apathetic attitudes rather than affirmative animus.”

• “Any interpretation of Sec. 504 must be responsive to two … considerations..”: statutory objectives vs. manageable bounds.

• Sec. 504 seeks “evenhanded treatment and opportunity”, not “equal results.”

Alexander v. Choate, (1985)

• Nothing in Sec. 504 suggests that Congress meant to limit “the State’s long-standing discretion to choose the proper mix of amount, scope, and duration limitations” on Medicaid.

• “Broad-based distributive” decisions do not have to be made in the way most favorable, or least disadvantageous, to the handicapped.”

• State need not provide adequate health care by providing more to handicapped.

1990: ADA As Expression of Broad Policy Goals To Promote:

• Equality of Opportunity • Full Participation of Individuals and Families • Independent Living • Economic Self-Sufficiency

ADA Sec. 2 – Findings and Purposes(a) Findings.--The Congress finds that--

(3) discrimination against individuals with disabilities persists in such critical areas as employment, housing, public accommodations, education, transportation, communication, recreation, institutionalization, health services, voting, and access to public services;

Emerging Disability Policy Framework: A Guidepost for Analyzing Public Policy

Robert Silverstein

85 Iowa L. Rev. 1691 (2000).

http://www.communityinclusion.org/publications/policydocs/#lawreview

A “New Paradigm”

• Disability considered as a natural and normal part of the human experience.

• Rather than focusing on “fixing” the individual, it takes actions to “fix” or modify the natural, constructed, cultural, and social environment.

• It acts to eliminate attitudinal and institutional barriers that preclude persons with disabilities from participating fully in society’s mainstream.

Statutory Locus of Disability Policy

• Civil rights statutes• Entitlement programs • Discretionary grant-in-aid programs • Regulatory statutes • Miscellaneous provisions that include appropriations, tax

legislation, and loans

The Set-Up

1999: SCOTUS Opines on ADA

•Sutton v. United Air Lines, 527 US 471•Albertsons, Inc. v. Kirkingburg, 527 US 555•Murphy v. United Parcel Services, Inc., 527 US 516•Olmstead v. LC, 527 US 581

ADA – Exception for Health Coverage

• Section 501(c) provides an exemption for “an insurer, hospital, or medial service company, HMO, or any agent or entity that administers bona fide benefit plans, or similar organizations” which may underwrite risks, classify risks or administer such risks if based upon sound actuarial data and insurance underwriting unless it is a “subterfuge to evade the purpose” of the law.

• Insurer must show: 1. Necessary to meet the legal requirements for fiscal integrity; 2. Coverage will cause a drastic increase in premiums or fundamental alteration so as it make policy no longer competitive and, 3. This is based upon legitimate actuarial data or claims experience. [EEOC]

View from 2007: The Americans with Disabilities Act in a Health Care Context• Sara Rosenbaum in Institute of Medicine (US) committee

on Disability in America; Field MJ, Jette AM, editors. The Future of Disability in America. Washington (DC): National Acadamies Press; 2007

• Contends that there is an inherent contradiction between health care financing laws & civil rights law. Insurance law emphasizes the legality of exclusion and risk avoidance vs. civil rights inclusion can result in greater costs. Market forces vs. regulatory focus on who must be served and what must be covered.

View from 2007: The Americans with Disabilities Act in a Health Care ContextProf. Rosenbaum concludes: • ADA provides a remedy for discrimination. • ADA does not protect discrimination in the design of

health insurance coverage. • Plaintiff can prevail if can show discriminatory choices in

how plan is administered. • Hard to predict what falls within “discriminatory

administration” and “nonremedial discriminatory design.”

The Response

• ADA expansion and clarification• ACA enactment and implementation• State health care reform efforts• Federal and state insurance coverage mandates

Legislation Accelerates• ADA Amendments Act of 2008: Specifically rejects

SCOTUS narrowing holdings and states that “the definition of disability shall be construed in favor of broad coverage of individuals under this Act, to the maximum extent permitted by the terms of this Act.”

• 2009: OR Legislature passes HB 2009 creating the Oregon Health Policy Board.

• 2010: OHPB releases “Oregon’s Action Plan for Health” to pursue the “Triple Aim”: better health, better care and lower costs.

• March 23, 2010: Affordable Care Act signed into law.

Key ACA Provisions

§147.104   Guaranteed availability of coverage.§147.106   Guaranteed renewability of coverage.§147.108   Prohibition of preexisting condition exclusions.§147.110   Prohibiting discrimination against participants, beneficiaries, and individuals based on a health factor.

§147.138   Patient protections.§147.150   Coverage of essential health benefits.§147.160   Parity in mental health and substance use disorder benefits.

ACA Essential Health Benefits• (A) Ambulatory patient services.• (B) Emergency services.• (C) Hospitalization.• (D) Maternity and newborn care.• (E) Mental health and substance use disorder services,

including behavioral health treatment.• (F) Prescription drugs.• (G) Rehabilitative and habilitative services and devices.• (H) Laboratory services.• (I) Preventive and wellness services and chronic disease

management.• (J) Pediatric services, including oral and vision care.

42 U.S.C. § 18022

Oregon Health Care Transformation• Coordinated Care Organizations• Mental Health/Chemical Dependency Integration• Electronic Medical Record Sharing• Community Health Outcome Planning and Metrics• Health Outcome Incentive Metrics• Health Equity Metrics and Supports• Maintain List of Prioritized Health Conditions and Services• Develop and share evidence-based care guidelines• Conduct comparative effectiveness research• Promote development of health homes and navigators

OHP Coordinated Care Model• 16 CCOs focus on primary care and prevention,

management of chronic conditions and keeping people healthy and out of the emergency department.

• Key elements of the coordinated care model include:• Best practices to manage and coordinate care;• Shared responsibility for health;• Performance is measured;• Paying for outcomes and health;• Transparency and clear information;• Maintain costs at a sustainable rate of growth.

ACA/ADA/Medicaid/Olmstead Nexus• “Medicaid plays a key role in advancing community

integration…”• Money Follows the Person demonstration grant program, • ACA established 2 new Medicaid authorities: Community First Choice

attendant services and supports and the Balancing Incentive Program.• Expanded 1915(i) HCBS option to be provided through state plan

authority, and health homes state plan option funding pre-institutionalization services.

• Olmstead cases have been successful in preventing Medicaid cuts that would result in greater institutionalization.

• The Kaiser Commission on Medicaid and the Uninsured, June 2014. Olmstead’s Role in Community integration for People with Disabilities Under Medicaid: 15 Years After the Supreme Court’s Olmstead Decision MaryBeth Musumeci and Henry Claypool.

Regulatory Clarification of Access• Provisions of Section 4203 of the Patient Protection and

Affordable Care Act (ACA) require the Architectural and Transportation Barriers Compliance Board (U.S. Access Board), in consultation with the Food and Drug Administration (FDA), to issue accessibility standards for medical diagnostic equipment (MDE) to accommodate adults with disabilities.

• Including examination tables, examination chairs, weight scales, mammography equipment, and diagnostic imaging equipment.

• http://www.access-board.gov/guidelines-and-standards/health-care/about-this-rulemaking/advisory-committee-final-report/executive-summary

Multi-prong: ABA Coverage for Autism

• OR Senate Bill 365 (2013 Legislative Session), • Court decisions in Oregon and in other states (Garrido v.

Dudek, 839 F.Supp.2d 1254 (2011); McHenry v. Pacific Source, Case No. 3:08-cv-562ST; AF v. Providence Health Plan, Case No. 3:13-cv-00776-SI)

• Independent Review Organization (IRO) decisions that have repeatedly overturned insurers’ denials of coverage for ABA;

• Health Evidence Review Commission (HERC) review and recommendation to cover ABA therapy;

• Bulletins and rules adopted by insurance regulators in other states that address ABA issues and statutes similar to Oregon’s statutes including CA, IN, WS and NY.

Affected Ethical Issues• Substituted (and Supported) Medical Decision-Making• End of Life Decision-Making

http://www.polst.org/educational_resource/oregon-polst-disability-guide/

• Access to Organ Transplants• Civil Commitment and Forced Treatment• Consent for Experimental Treatment• Assisted Suicide• Sterilization• Invasive Surgical Modifications

http://www.ndrn.org/images/Documents/Resources/Publications/Reports/Devaluing_People_with_Disabilities.pdf

• Treatments Affecting Disability Identity

Bob Joondeph, Executive Directorbob@droregon.org