Thread by @itsbodypolitic

📢 Body Politic & our research partner @patientled explain President Biden’s announcement yesterday about #LongCovid disability rights in the US, with quick links to federal agency publications on #LongCovid that patients should bookmark. #ADA31
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wearebodypolitic.com/bodytype/2021/…

First, links to publications from federal agencies on #LongCovid yesterday:

- Guidance from DOJ & HHS ada.gov/long_covid_joi…
- For students & educators: www2.ed.gov/about/offices/…
- Employment support @USDOL dol.gov/agencies/odep/…

- @ACLgov resources acl.gov/sites/default/…
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One of the main takeaways:
awareness for people with #LongCovid who now realize they may be considered disabled under ADA, IDEA, etc. and therefore may be entitled to accommodations & services that make everyday life activities, work, and school more accessible.
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The guidance issued by HHS along with DOJ states: “Put simply, they [disabled Long COVID patients] are entitled to full and equal opportunities to participate in and enjoy all aspects of civic and commercial life.”
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@LisaAMcCorkell w/ @patientled says “[Yesterday’s] guidance will help relieve some of the self-advocacy burden on #LongCovid patients in navigating accommodations & services, as the guidance…will help provide credible instruction to institutions, workplaces, schools & community”

“Many disabled and chronically ill people still face barriers fighting for their rights under the ADA and IDEA, and while [many] Long COVID patients have already joined…their ranks in what is shaping up to be the one of the largest mass disabling events in modern history,”
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“…we hope today’s guidance helps pave the way for better disability protection and services under the law for our Long COVID community and other chronically ill people.” - @LisaAMcCorkell , Long COVID Patient-Researcher,@patientled
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These efforts from the federal government set an example for the international community — #LongCovid is real; patients, including school-aged children, may be disabled by it; and they are entitled to the same protections & benefits other citizens w/ disabilities have.
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While we would have liked to see explicit recognition of the testing access issue that many #LongCovid patients face, we want to clarify neither the guidance from HHS & DOJ nor from DOE require history of positive COVID-19 test to determine disability under ADA, section 504, etc.

“Disability determination under Social Security is a separate policy issue and eligibility determination remains complicated and challenging for #LongCovid patients seeking disability benefits.” - @ItsAngInLA MSW, VP Body Politic & Long COVID patient

Continued..
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“…Still, [the] announcement sets the stage for future policy actions by Congress that will help secure essential resources & funding for #LongCovid patients, such as SSA reforms in progress and @RepDonBeyer & Rep. Bergman’s Long Haulers Act.” - @ItsAngInLA

While Body Politic & @patientled recognize this as a win for the #LongCovid community, we acknowledge that many people in the chronic illness & disability communities such as those living with #MECFS , chronic pain #LymeDisease , #Dysautonomia & many others have…
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… longed for recognition of their disease & barriers they face having their disabilities acknowledged by employers, communities, & the medical system.

The success Long COVID advocates celebrate today are built on the previous efforts of disability activists & patient advocates.

Yesterday’s announcement reflects over a year of volunteer labor by Body Politic and @patientled whose patient-leaders have met w/ the President of the United States’ COVID-19 Health Equity Task Force on several occasions to represent people living with Long COVID…
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…In addition to their numerous meetings with the CDC, National Institutes of Health, Substance Abuse and Mental Health Services Administration, Office of Personnel and Management, and other federal partners.
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They have presented data from @patientled peer-reviewed publication, told their stories of living with #LongCovid and reported on barriers this
population faces with navigating the medical system, employment, benefits, and everyday life in their communities.
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Without the diligent work of patient advocates from organizations like Body Politic and PLRC, the presidential announcement and guidance published today by federal agencies would not contain the Long COVID patient-centered perspectives they do. 
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Finally, more quick links on the topic of #LongCovid and disability rights, resources:
- how @ACLgov networks can help: acl.gov/sites/default/…

- event on applying for disability benefits for #LongCovid

- join our support group: wearebodypolitic.com/support-group

More in the full statement linked here from Body Politic and @patientled : wearebodypolitic.com/bodytype/2021/…

If you have #LongCovid & wished yesterday’s announcement included disability benefits reform or funding for #LongCovid we urge you to contact your representatives to support SSI reform, Rep. Beyer & Bergman’s COVID long-hauler bill, & #HCBS funding in infrastructure bill.