AAPD – American Association of People with Disabilities
April 16, 2020The Honorable Alex Azar Secretary U.S. Department of Health and Human Services 200 Independence Avenue S.W. Washington, DC 20201Roger SeverinoDirectorOffice for Civil RightsU.S. Department of Health and Human Services 200 Independence Avenue S.W. Washington, DC 20201Dear Secretary Azar and Director Severino:Representing millions of patients, people with disabilities and older adults, our organizations are writing to express our strong and urgent support for the Department’s Office for Civil Rights to issue additional guidance to ensure that schemes to ration scarce health care resources during the coronavirus disease 2019 (COVID-19) pandemic comply with federal nondiscrimination laws. As you are aware, many states and hospitals plan to rely on Crisis Standard of Care plans to inform providers how to make decisions on the allocation and re-allocation of scarce medical resources. Too many of these plans, however, discriminate based on disability and age, devaluing the lives of people with disabilities and older adults. If implemented, they would deny life-saving treatment to people based on disabilities or age that have nothing to do with their ability to benefit from care and survive COVID-19. This violates the Americans with Disabilities Act, Section 504 of the Rehabilitation Act, Section 1557 of the Affordable Care Act, and the Age Discrimination Act. It is essential that the federal government provide guidance to states and health care providers setting forth clear requirements to ensure that the health care rationing decisions comply with federal nondiscrimination laws. We greatly appreciate the guidance that has already been issued by the Office of Civil Rights (OCR) in its March 28, 2020 bulletin. But significant confusion remains in the health care provider community. As states move forward with rationing plans in the face of imminent shortages of ventilators and other supplies, hospital beds, and staff, it is urgent that you issue additional guidance.Additional guidance should clarify that federal law prohibits treatment allocation decisions from being made based on assumptions that a person’s disability or age will diminish the person’s prospect of survival beyond the immediate term or require the use of greater treatment resources. It should clarify that allocation decisions based on “life years,” life expectancy, or prognosis beyond short-term survival discriminate against disabled people and older adults. It should clarify that reasonable modifications must be made where needed by a person with a disability to have equal opportunity to benefit from the treatment. These may include interpreter services, modifications such as increased baseline times for responsiveness to treatment, or additional services needed due to a disability. Similarly, OCR guidance should clarify that federal law prohibits age-based categorizations that penalize older adults by making them automatically ineligible for life-saving care without any individualized assessment.We agree with the National Council on Disability, which urged OCR to issue clear guidance on these issues and “to maintain robust enforcement activities, including investigations of complaints, and to remind the public in every one of OCR’s communications how they can file such complaints,” and recommended that HHS, “at every opportunity and through each one of its divisions and offices, include standardized language in each of its communications, no matter the topic, regarding civil rights obligations and the steps by which an individual may file a complaint if they believe their civil rights have been violated.”We also strongly recommend that OCR advise states and healthcare entities of their obligation to maintain data concerning the administration of health care rationing, including accurate tracking of the numbers of persons admitted to hospital, the number who receive ICU for COVID-19 treatment, the number who are denied care or transferred to palliative care only, the number who recover, and the number who die, including disaggregated information about these individuals’ racial, ethnic, gender, and disability status, and whether they were receiving life-sustaining care or palliative care only based on rationing at time of death. Lives have been and will be lost to COVID-19. We owe it to those lives to learn how to better our society and healthcare system’s response to a pandemic, and we cannot achieve improvement without accurate data.We are pleased that Congress shared its intent that civil rights laws be upheld in this crisis in a bipartisan and bicameral manner in a March 25, 2020 letter to Secretary Azar and Attorney General Barr, stating:In light of the COVID-19 pandemic, we urge your Department to act quickly to notify states that as they review and create their "crisis standards of care," they must not authorize or promote any form of disability discrimination that would violate the Americans with Disabilities Act and Section 504 of the Rehabilitation Act. This would include incorporating denials of care, lower prioritization of care, or denial of or limitation of healthcare resources on the basis of one's disability, severity of disability, need for resource-intensive services and supports, or the perception of a lower quality of life on the basis of disability. The policies and guidelines in a significant number of states deny or give lower priority for life-saving treatment to the people with disabilities and older adults that we represent, including those that are the subject of complaints filed with OCR. Policies across the country give people with disabilities and older adults good cause for alarm. We rely on you and your leadership to ensure that the United States lives up to its promise of equal opportunity, nondiscrimination and civil rights of all human beings, especially during times of crisis. Therefore, we look forward to your further guidance and continued enforcement of our civil rights laws.Sincerely,National Organizations ACCSESACORN8African Services CommitteeAging Life Care AssociationAlbie Aware Breast Cancer FoundationAlliance for Aging ResearchAllies for IndependenceALPHA-1 FOUNDATIONALS AssociationAmerican Academy of Physical Medicine & RehabilitationAmerican Association of People with DisabilitiesAmerican Association on Health and DisabilityAmerican Association of Kidney PatientsAmerican Autoimmune Related Diseases AssociationAmerican Behcet's Disease AssociationAmerican Congress of Rehabilitation MedicineAmerican Council of the BlindAmerican Geriatrics SocietyAmerican Kidney FundAmerican Music Therapy AssociationAmerican Music Therapy AssociationAmerican Network of Community Options & Resources (ANCOR)American Physical Therapy AssociationAmerican Psychological AssociationAmerican Therapeutic Recreation AssociationAssociation of Academic PhysiatristsAssociation of Programs for Rural Independent LivingAssociation of University Centers on Disabilities (AUCD)Asthma and Allergy Foundation of AmericaAutism Society of AmericaAutistic Self Advocacy NetworkAutistic Women & Nonbinary NetworkAutistic Women and Nonbinary NetworkAxis AdvocacyBazelon Center for Mental Health Law Black AIDS InstituteBloom's ConnectBrain Injury Association of AmericaBridge the Gap - SYNGAP Education and Research FoundationCalifornia Chronic Care CoalitionCancer and CareersCancer Support CommunityCancerCareCaregiver Action NetworkCenter for Autism and Related DisordersCenter for Disability RightsCenter for IndependenceCenter for Public RepresentationCFC InternationalChristopher & Dana Reeve FoundationChronic Care Policy AllianceChronic Disease CoalitionCivil Rights Education and Enforcement CenterCoelho Center for Disability Law, Policy and InnovationCommunicationFIRSTCommunity Access CenterCommunity Options, Inc.COPD FoundationCure SMAcutaneous lymphoma foundationCystic Fibrosis Lifestyle FoundationCystic Fibrosis Research, Inc. (CFRI)Davis Phinney FoundationDepression and Bipolar Support AllianceDiabetes Patient Advocacy Coalition (DPAC)Disability Action for AmericaDisability:INDisability JusticeDisability Law CenterDisability Power & PrideDisability Resource CenterDisability Rights AdvocatesDisability Rights Education and Defense Fund Down Syndrome Affiliates in ActionDreamsickle Kids FoundationEastersealsEpilepsy FoundationEveryLife Foundation for Rare DiseasesFriends of Cancer ResearchGlobal Liver InstituteGO2 Foundation for Lung CancerHealthcare Rights CoalitionHeart Valve Voice USHepatitis Education ProjectHIGH IMPACT Mission-based Consulting & TrainingHuntington's Disease Society of AmericaImmune Deficiency FoundationIndependence Empowerment CenterIndependent Lifestyles, Inc.International Foundation for Autoimmune & Autoinflammatory ArthritisJustice in AgingLakeshore FoundationLinking Employment, Abilities and Potential (LEAP)Little LobbyistsLiving Beyond Breast CancerLivpactLUNGevity FoundationLupus and Allied Diseases Association, Inc.Lutheran Services in AmericaMedicare Rights CenterMen's Health NetworkMental Health AmericaMLD FoundationMultiple Sclerosis FoundaitonMuscular Dystrophy AssociationNASTADNational Academy of Elder Law AttorneysNational ADAPTNational Alliance for Hispanic HealthNational Alliance on Mental IllnessNational Assocation of Councils on Developmental DisabilitiesNational Association of Rehabilitation Research and Training CentersNational Association of Social Workers (NASW)National Association of State Directors of Developmental Disabilities ServicesNational Association of State Head Injury AdministratorsNational Center for Learning DisabilitiesNational Center for Transgender EqualityNational Coalition for LGBT HealthNational Council on Independent LivingNational Diabetes Volunteer Leadership CouncilNational Disability Rights NetworkNational Down Syndrome CongressNational Health CouncilNational Health Law ProgramNational Hemophilia Foundation National Infusion Center AssociationNational Minority Quality ForumNational MPS SocietyNational Multiple Sclerosis SocietyNational Organization for Rare DisordersNational Pain Advocacy CenterNational Respite CoalitionNational Sickle Cell Disease Association of AmericaNative American Disability Law CenterNCMHRNMD United, Inc.Not Dead YetNTM Info & ResearchParalyzed Veterans of AmericaParent Project Muscular DystrophyPartnership for Inclusive Disaster StrategiesPartnership to Fight Chronic DiseasePartnership to Improve Patient CarePatient AdvisorPatient Services Inc.Pulmonary Hypertension AssociationRare ArmyRASopathies NetworkResource Center for Accessible LivingRespectAbilitySeniorLAW CenterSickle Cell Anemia FoundationSickle Cell AsociationSickle Cell Foundation IncorporatedSolve ME/CFS InitativeSpina Bifida AssociationTASH, Inc.The Advocacy InstituteThe AIDS InstituteThe Arc of the United StatesThe Bonnell Foundation: Living with cystic fibrosisThe Center for HIV Law and PolicyThe Center for Independence of Individuals with a DisabilitiesThe Coelho Center for Disability Law, Policy and InnovationThe Gerontological Society of AmericaThe Hepatitis C Mentor and Support Group-HCMSGThe Migraine DivaThe National Kidney FoundationThe Well ProjectTreatment Action GroupU.S. Pain FoundationUnited Cerebral Palsy NationalUnited Spinal AssociationUnited States International Council on DisabilitiesVetsFirstWhistleblowers of AmericaWilliams Syndrome AssociationYad HaChazakah-The Jewish Disability Empowerment Center Inc.State Organizations Ability360Access Alaska, Inc.Access LivingAccessible Resources for Independence IncorporatedADAPT MontanaADAPT of BostonADAPT of TexasAging Services Collaborative of Santa Clara CountyAIDS Law Project of PennsylvaniaAIM Independent Living CenterAlabama Disabilities Advocacy ProgramAlliance Center for IndependenceAloha Independent Living HawaiiAmerican Nurses Association\CaliforniaArizona ADAPTArizona Center for Disability LawArizona Epilepsy FoundationAutism Insurance for OregonBIAA-KYBoston Center for Independent LivingBoston Commission for Persons with DisabilitiesBrain Injury Association of DelawareBrain Injury Association of GeorgiaBrain Injury Association of IllinoisBrain Injury Association of Kansas and Greater Kansas CityBrain Injury Association of MassachusettsBrain Injury Association of New York StateBrain Injury Association of SCBrain Injury Association of VABronx Independent Living ServicesBrooklyn Center for Independence of the DisabledCA SILCCalifornia Access CoalitionCalifornia Disaster Strategies CoalitionCalifornia Foundation for Independent Living CentersCape Organization for Rights of the Disabled (CORD)Catskill Center for Independence, Inc.Center for Disability Rights - CTCenter for Independence of the Disabled, NYCenter for Independent Living of Central PACenter for Living & Working, Inc.Center on Disabilities and Human DevelopmentCentral Iowa Center for Independent LivingCentral PA ADAPTCommunity Legal Services of PhiladelphiaCommunity Resources for IndependenceConsortium of Idahoans with DisabilitiesConsumer Directed Personal Assistance Association of New York StateCRILDAWN Center for Independent LivingDemocratic Disability Caucus of FloridaDesigner Genes of North Dakota, Inc.DIRECT Center for IndependenceDisabilities Law Program of Community Legal Aid Society, Inc.Disabilities Resource Center of SiouxlandDisability Action Center - NW, Inc.Disability Community HubDisability Community Resource Center, Inc.Disability Empowerment CenterDisability Law CenterDisability Law Center of AlaskaDisability Law ColoradoDisability Policy ConsortiumDisability Resource CenterDisability Rights ArkansasDisability Rights CaliforniaDisability Rights Center - New HampshireDisability Rights Center of KansasDisability Rights FloridaDisability Rights IdahoDisability Rights IowaDisability Rights LouisianaDisability Rights MaineDisability Rights MississippiDisability Rights MontanaDisability Rights NebraskaDisability Rights New JerseyDisability Rights North CarolinaDisability Rights of West VirginiaDisability Rights OhioDisability Rights OregonDisability Rights TNDisability Rights VermontDisability Rights WisconsinDisability:IN Greater Kansas CityDisability:IN North CarolinaDisability:IN OhioDisabled Resources Center, Inc. (DRC)Down Syndrome Alliance of the MidlandsDown Syndrome Association of BrevardDown Syndrome Association of ConnecticutDown Syndrome Awareness Group of East TNDown Syndrome IndianaEl Paso Desert ADAPTENDependence Center of Northern VirginiaEpilepsy Fondation New EnglandEpilepsy Foundation ArizonaEpilepsy Foundation Central & South TexasEpilepsy Foundation Greater Los AngelesEpilepsy Foundation IowaEpilepsy Foundation MarylandEpilepsy Foundation NebraskaEpilepsy Foundation of ColoradoEpilepsy Foundation of KentuckianaEpilepsy Foundation of Long IslandEpilepsy Foundation of MichiganEpilepsy Foundation of Middle and West TNEpilepsy Foundation of MinnesotaEpilepsy Foundation of NevadaEpilepsy Foundation of Northern CaliforniaEpilepsy Foundation of San Diego CountyEpilepsy Foundation of VirginiaEpilepsy Foundation OhioEpilepsy Foundation OregonEpilepsy Foundation Texas - Houston/Dallas-Fort Worth/West TexasEpilepsy Foundation UtahEpilepsy Foundation WashingtonEpilepsy Foundation West VirginiaFamily Voices of CAFinger Lakes Independence CenterFlorida Association of Centers for Independent LivingFreedom Valley Disability Enablement, Inc.GDC LifespanGranite State Independent LivingGulf Coast ADAPTHouston Center for Independent LivingIdaho Anti-Trafficking CoalitionIdaho Council on Developmental DisabilitiesIdaho State Independent Living CouncilILRCSFIMAGE Center of MarylandIndependenceFirstIndependent Living Center of the Hudson Valley, Inc.Independent Living Resource Center San FranciscoIndependent Living, Inc.Indiana Disability RightsIndiana Statewide Independent Living CouncilIntermountain Fair Housing CouncilIowa Chapter of United Spinal AssociationIowa SILCKansas ADAPTLake County Center for Independent LivingLegal Clinic for the Disabled, Inc.Life, A Center for Independent LivingLINC- Living Independence Network CorporationLiving River: A Retreat on the CahabaLong Island Center for Independent LivingLVCIL (Lehihg Valley Center for Independent Living, (Inc.)Mass Families Organizing for ChangeMassachusettsMassADAPTMetropolitan Center for Independent LivingMichigan Protection & Advocacy Service, Inc.Minnesota Disability Law Center/Mid-Minnesota Legal AidMinnesota Statewide Independent Living CouncilMultiple Sclerosis FoundationNebraska Statewide Independent Living CouncilNevada Disability Advocacy & Law CenterNew York Association on Independent LivingNew York Association on Independent LivingNew York State Sickle Cell Advoccy Network INC, NYS.SCAN,North Alabama Sickle Cell Foundation, Inc.North Carolina AIDS Action NetworkNorth Central Independent Living Services, Inc.North Central PA ADAPTNorth Dakota Protection & Advocacy ProjectNortheast Independent Living Program IncNorthern Regional Center for Independent Living, Inc.NW ADA Center-Idaho, Idaho Access ProjectNYU Law Disability Allied Law Student AssociationOcean State Center for Independent LivingOptions for Independent Living, Inc.PA ADAPTPA Families Need Nurses NowParaquadPennsylvania Council on Independent LivingPersonal Attendant Coalition of TexasPersonal Attendant Coalition of TexasPhilly ADAPTPlacer Independent Resource Services- local organizationProtection & Advocacy System, Inc.Protection and Advocacy for People with Disabilities, IncResource Center for Accessible Living, Inc.RCIVRoads To Freedom CILRoads to IndependenceSan Antonio ADAPTService Center for Independent LifeSickle Cell Anemia Foundation or Oregon, Inc.Sickle Cell Assoc of HoustonSickle Cell Association - West Alabama Chapter, IncSickle Cell Disease Association of America - Mobile Chapter, Inc.Sickle Cell Disease Association of FloridaSilicon Valley Independent Living CenterSKIL Resource CenterSKIL Resource CenterSoutheast Alaska Independent Living, Inc. (SAIL)Southeastern MN Center for Independent LivingSoutheastern MN Center for Independent Living, Inc.Southern Tier ADAPTSouthern Tier Independence CenterSouthwest Center for IndependenceSouthwest Louisiana Independence CenterStatewide Independent Living Council of IllinoisStatewide Independent Living Council of KansasStavros Center for Independent Living, inc.Taconic Resources For Independence, Inc.Tennessee Disability CoalitionTexas State Independent Living CouncilThe Arc TennesseeThe Center for Disability EmpowermentThe Dayle McIntosh CenterThe Disability Resource Center of the Rappahannock Area, Inc.The Independence CenterThe Sickle Cell Association of KentuckianaThe Sickle Cell Association of New JerseyThe Sickle Cell Foundation of TennesseeTopeka Independent Living Resource CenterTri-County Independent LivingUnited Vision for IdahoVirginia Board for People with DisabilitiesVision for EqualityWashington ADAPTWest Virginia Statewide Independent Living CouncilWestchester Independent Living CenterWyoming SILC ................
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