❤️ASAN February Update ❤️

February 29, 2024

ASAN February Newsletter

Dear friend,

No matter how short the month is, there’s plenty of work going on here at ASAN! From educating our community on contagious illnesses to urging the FDA to do better for people with disabilities to uplifting the next generation of advocates, check out what we’ve been up to this month.

The time to honor those we’ve lost is fast approaching. This Friday, March 1st, the disability community will gather virtually across the world to remember disabled victims of filicide – disabled people murdered by their family members or caregivers. Since 2012, ASAN and other disability rights organizations have come together to send a clear message that disability is not a justification for violence. Everyone is welcome at our Virtual Vigil, or you can find a local vigil here. Feel free to choose one local to you, or plan to join one whose time or platform works best for you.

There’s only a few days left to apply for the 2024 Autism Campus Inclusion (ACI) Leadership Academy! The ACI summer leadership training prepares autistic students to engage in disability advocacy on their college campuses. ACI participants learn about making student groups, understanding disability policy, and talking to people in power. After the Academy, students get help from ASAN to meet their advocacy goals at their college. This year’s program will be held virtually from July 15th through 24th, 2024.

Earlier this month, we held a webinar on COVID-19 and Mpox. There’s lots of information being shared about contagious illnesses, including COVID-19 and Mpox. It can be overwhelming to keep up as new information becomes available. This can make it hard to understand what choices we should make to keep ourselves and each other from getting sick. Our webinar talked about what Mpox and COVID-19 are, who is most impacted, how they spread, and how we can keep each other safer. If you missed it, check out the recording here!

We’re still urging the U.S. Food and Drug Administration (FDA) to release a proposed ban on the use of electric skin shock devices to treat a person’s self-injurious or aggressive behavior. It has now been eight years since the FDA released its first proposal to ban these devices and ten years since a panel of experts recommended that they be banned. Over the decade that has passed since, people with disabilities have continued to suffer from painful and dangerous electric shocks. Keep up with the fight to #StopTheShock, learn what you can do, and keep an eye out for when the time to send comments here!

ASAN also submitted comments to the IACC RFI on Co-Occurring Conditions, and we appreciate everyone who submitted their own comments too! Submitting public comments is an important way for self-advocates to make our needs and priorities known when it comes to public policy. The IACC makes recommendations about where federal funds for autism research should go and what subjects should be prioritized, and it’s important to make our voices heard!

ASAN was deeply troubled by reports made by The Washington Post this month that the CDC was planning to change its COVID-19 isolation guidelines. ASAN condemned the possible shortening of isolation guidelines and will continue to hold the federal government accountable for protecting the public from the ongoing risk of COVID-19.

There’s a lot of work to be done, and we’re grateful to do it by your side!

Sincerely,

The Team at ASAN

As a member of the Gender Justice and Disability Rights Coalition, we released new principles on heritable human genome editing to guide policymaking.
ASAN was glad to see the MedStar system will make necessary changes to ensure disabled patients’ rights to have supporters with them are respected. This is the resolution of a complaint ASAN and other orgs brought to the HHS Office for Civil Rights in 2020.
We joined a comment on Enforcement of State Compliance with Medicaid renewals and reporting requirements.
Alongside NDRN and other organizations, we stressed the importance of the Census Bureau engaging with the disability community in their process around the American Community Survey changes.
We joined other organizations to urge Congress to uphold the intent of the bipartisan Family First Prevention Services Act of 2018 (“Family First”) to reduce unnecessary congregate care placements and prioritize family-based care when a child must be removed from their family and oppose the Ensuring Medicaid Continuity for Children in Foster Care Act of 2023 (S. 3196).
ASAN supported HR 485, the Protecting Health Care for All Patients Act, which would extend to programs like Medicaid the existing protections in the Medicare program against use of Quality‐adjusted Life Years (QALYs) and similar measures.
We joined two comments on the Department of Justice’s Medical Diagnostic Equipment Notice of Proposed Rulemaking (NPRM).
As part of the National Coalition on Accessible Voting (NCAV), we signed onto a statement opposing the 8th Circuit’s decision in Arkansas State Conference NAACP v. Arkansas Bd. of Apportionment, which threatens to strip private parties of the right to sue under Section 2 of the Voting Rights Act.
ASAN joined an amicus curiae brief in the case of FDA v. Alliance for Hippocratic Medicine, which involves access to mifepristone.
As part of the No Tech Criminalization in Education Coalition (NOTICE), we signed onto a letter opposing the Fiscal Commission Act of 2023, which could lead to benefits cuts.
We opposed the use of artificial intelligence and police surveillance technologies in public schools to abuse the civil and human rights of students from historically marginalized communities.
ASAN signed onto a letter from the Leadership Conference Fair Housing and Lending Task Force on 2024 priorities to the United States Department of Housing and Urban Development.
As a part of CCD, we submitted a comment to the U.S. Department of Education (ED), Office of Post Secondary Education (OPE) regarding supporting student mental health and/or substance use disorder (behavioral health) needs in higher education.