ASAN February Update
Dear friends,
Even with a short month, there was no shortage of activity here at ASAN! From new resources to new guidance for hospitals and beyond, it was a busy month – and we got a shiny new look with the debut of our new website!
The month had barely begun when we submitted comments regarding organ procurement and transplant to the Centers for Medicare and Medicaid Services (CMS). ASAN is pleased that CMS is utilizing Medicare and Medicaid funding as an opportunity to reduce disparities and improve quality for the more than 39,000 transplant recipients and more than 100,000 people on waiting lists for organs, but our comments encouraged them to avoid measures of transplant outcomes which explicitly discriminate on the basis of disability.
In early February, ASAN and other disability rights organizations met with the Secretary of Health and Human Services (HHS) to discuss how HHS can better serve and center people with disabilities in the response to the pandemic. It was a detailed policy discussion, and to ensure progress is made we submitted a letter that documents our specific policy asks.
We signed onto a letter urging President Biden to nominate a judge or lawyer who has demonstrated an understanding of and commitment to a fair day in court for people with disabilities and other historically marginalized populations when filling the open Supreme Court seat. We enthusiastically support the commitment to naming the first Black woman Justice to the Supreme Court. There are many Black women judges and lawyers who are highly qualified for the Court, and who understand the impact of Supreme Court decisions on people with disabilities, and we look forward to the nomination of one.
We also joined and published an open letter to the Lancet about the future of care and clinical research in autism, acknowledging gaps in the recommendations and encouraging the inclusion and prioritization of concepts developed by autistic scholars applied to clinical research. We call for shared, accessible platforms to continue the discourse and start building collaboration.
After a fight as long as the pandemic itself, we celebrated new guidance about the civil rights of people with disabilities in hospitals during the pandemic! The guidance talks about crisis standards of care, reasonable accommodations, supporters in hospitals, and more. This guidance is vital for people with disabilities to ensure our access to health care benefits and services. Advocates, including ASAN, have been pushing for this guidance for over a year, and we are glad to see it released. You can use this guidance to advocate for your civil rights when accessing health care during COVID-19.
We released two huge new toolkits this month! There are many different ways people can identify, but there are also many different kinds of discrimination facing LGBTQ+ people. Our new toolkit, Definitions and Beyond, is all about feeling proud and supported as a member of the LGBTQ+ community.
Past and current policies have built racial inequality into our communities, in areas such as emergency management, policing, and housing. The second new toolkit, Crisis in our Communities: Racial Disparities in Community Living addresses these disparities and more.
Definitions and Beyond and Crisis In Our Communities are only first steps towards making these conversations accessible to everyone — more toolkits are in the works about specific systems of oppression such as racism and homophobia.
There’s still time to apply to join us at our Autism Campus Inclusion Summer Leadership Academy! Applications are due March 6th, so just under a week away. The ACI summer leadership training prepares autistic students to engage in disability advocacy on their college campuses. This year’s program will be held from July 11th through 20th, 2022. Don’t delay, download your application and get started today!
This Tuesday, March 1st, the disability community will gather across the nation to remember these disabled victims of filicide – disabled people murdered by their family members or caregivers. COVID-19 may have changed how we are gathering this year, but we can still honor and remember those we’ve lost to filicide. Join us for our virtual vigil or DC vigil this Tuesday. Feel free to choose one local to you, or plan to join one whose time or platform works best for you.
More information about all of these things and more can be found at our new website! Over the past few years, we’ve conducted community surveys asking for your input about how you use our website and how we could improve its overall design and functionality. We’ve incorporated your feedback into our redesign process, and we’re excited to finally release the new version of AutisticAdvocacy.org! We encourage you to check out the new site and let us know how the website is serving your needs!
With gratitude,
The Team at ASAN
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