Chapter 8: How can we support people with Long Covid?

CHAPTER 8

How can we support people with Long Covid?

Does Long Covid qualify as a disability?

Long Covid qualifies as a disability under Titles II and III of the Americans with Disabilities Act, Section 504 of the Rehabilitation Act of 1973, and Section 1557 of the Affordable CareAct.182ButwhetheraLongCovidpatientreceiveslong-term disabilitycoverage dependson theirabilitytoprovidemedical evidence of their condition—a requirement some simply can’t meet. Even those who can should expect a waiting period that might stretch on for months, as the Social Security Administrationworksthroughthebacklogofclaimsthatbuiltup whentheagencyhadtoceaseitsin-personoperations. Thedifficultyofqualifyingfordisabilitybenefitswithoutevident documentation, such as a positive Covid-19 test result or laboratory scans, is borne by many sufferers of post-infectious illnesses. Lack of research, training, and specialization in rare chronicdiseasesentailsthatsomepatientsmightnotreceivean accuratediagnosisforyears.Eveniftheirsymptomsaresevere enough to seriously limit or obstruct their ability to work, obtaining disability coverage remains an uphill battle. Some

182 Guidance on “Long COVID” as a Disability Under the ADA, Section | HHS.gov

Long Covid patients were approved based on extensive documentationofhealthvisitsorinabilitytowork.183 Legislation qualifying Long Covid as a disability has also advanced outside the United States. In June 2022, a Scottish court ruled in favor of a Long Covid patient seeking compensation from their former employer on the grounds of disabilitydiscrimination.184

Do workplaces offer support for people with Long Covid?

LongCovidmayqualifyasadisabilityundertheAmericanswith Disabilities Act, which provides some accommodations to workers who have or develop a disability that “substantially limitsmajorlifeactivities.”185 Theserequirementsofemployers include, but are not limited to, providing or modifying equipment or devices; part-time or modified work schedules; reassignment to a vacant position; or adjusting/modifying examinations,trainingmaterials,andworkplacepolicies. Employers are not required to provide accommodations that remove essential job functions or lower production standards, nor provide personal need items such as hearing aids and wheelchairs.

For instance, if a truck driver develops Long Covid symptoms that include increased tiredness, fatigue, or difficulty concentrating, an employer is required to provide accommodations for that employee, potentially including

183 Another Struggle for Long Covid Patients: Disability Benefits - The New York Times 184 Caretaker successfully claims that 'long COVID is a disability' in landmark ruling

185 Workers With Long Covid-19: You May Be Entitled to Workplace Accommodations | US Department of Labor Blog

reduced driving hours or transfer to another role. If the employee’s symptoms lower production standards or impede essentialjobfunctions,theemployerisnotrequiredtokeepthat employeeonstaff. WorkerswithLongCovid may befurloughedorfiredincasesof extended leave, but legal professionals should be consulted in thesesituations.

What challenges are people with Long Covid experiencing in the workplace?

Long Covid workers receive little to no additional worker compensation at a time when Long Covid is fueling labor shortages. ArecentstudyfromtheUnitedKingdomfoundthatoneinfive hospitalized people with Covid-19 had not resumed work five monthsaftertheirCovidinfections.186 Thissuggestspeopleare droppingoutoftheworkforceasadirectrepercussionofLong Covid,whetherintheshorttermtoaddresstheirhealth,orlongtermviaearlyretirement.187

186 Long Covid: the invisible public health crisis fuelling labour shortages | Financial Times 187 Back-to-Office Pressure Is Creating a Crisis for Long Covid Patients

Source:CharacterizinglongCOVIDinaninternationalcohort:7 monthsofsymptomsandtheirimpact

How do I talk to my family and friends about Long Covid?

LongCovidhasimpactedmillionsofpeopleintheUnitedStates andaroundtheworld.Thoseexperiencingisolationordifficulty explainingtheirsituationarenotalone. Whether your Long Covid consists of a lingering cough or extensive immunodeficiency, understanding the widespread natureofLongCovidwillinformaconversationwithothers.If someoneisignorantoftheissue,informthemofyourstruggles and the struggles of many. If they continue to not understand, knowthatyoudidyourbestandyourexperienceisvalid.

OnewaytobetterunderstandLongCovid,whetherasaperson withLongCovidorsomeonehopingtolearnmore,istoconnect with Long Covid advocacy groups, which are becoming much more common as we learn more. Akin to support groups for other major disabilities, these groups connect those that have LongCovid,providereadingmaterialsforthosewishingtolearn more,andadvocatepubliclyforthepolicyrightsofpersonswith LongCovid.

What resources can help me support loved ones living with Long Covid?

While tangible resources to help support caregivers are unfortunately limited, there are some labor and education protections as described above. These are available to people withLongCovidwhomayalsobeentitledtodisabilityandsocial securitycompensationinsomeinstances,butanecdotalreports suggestdifficultywithlessseveresymptoms.188 TheCentersforDiseaseControlandPreventionemphasizethe mental health of caregivers, reiterating the importance of managing stress, anxiety, and uncertainty of caring for people with Long Covid.189 They provide external links to support groups and additional resources. Codified benefits or compensationarelimitedtononexistent. TheAmericanAcademyofPhysicalMedicineandRehabilitation provides an extensive and updated list of Long Covid medical resourcesontheirwebsite.190Theseresourcesincludethelatest

188 COVID-19 Long-Haulers May Have Tough Time Getting Long-Term Disability Benefits 189 Caring for People with Post-COVID Conditions | CDC 190 Long Covid (PASC) Resources

updates for ongoing studies, CDC and NIH policy updates, internationalresearch,etc.

The Administration for Community Living also provides a policy-focused list of resources on their website, such as disabilityandcivilrightspolicyupdates.191

How can we better communicate the risks of Long Covid in public health messaging?

Public messaging on Long Covid has often been incomplete or sparse, especially in comparison to news on acute SARS-CoV-2 infection.

Partialinformationcontributestothewidespreadminimization of Long Covid—people with Long Covid lack the vocabulary to express their experiences; unaware healthcare providers dismiss complaints; government officials fail to consider the long-term population-level impacts of the condition.192 These factors worsen the illness uncertainty and frustration felt by thosewithLongCovid.193 To avoidfurther pitfalls and to inform the public productively, public health messaging should aim to be accurate and diverse.194 New findings should be shared critically, without downplaying study limitations and other uncertainties of Long Covid.ItwillbehelpfultocompareLongCovidtosimilarchronic conditions,too;thisway,healthcareprovidersandpeoplewith

191 Resources for People with Long Covid | ACL Administration for Community Living 192 Omitting long Covid from pandemic messaging is harmful for public health 193 The Effects of Messaging on Expectations and Understanding of Long COVID: An Online Randomised Trial | medRxiv 194 Long COVID coverage often falls short, but here's how reporters can do better

LongCovidcanborrowfromtheworkofthesecommunitiesand pursue treatment accordingly. Finally, reporters should highlightarangeoftestimonialstoillustrateLongCovid’swide breadth of presenting conditions. In the absence of published data, these stories become essential to identifying and understanding an individual's unique presentation of Long Covid.