💖 ASAN February Update 💖

February 27, 2023

ASAN February Newsletter

Dear friend,

While we hunker down from the winter weather, we’re reminded that everyone should have a safe place in the community to call their own. From Andre’s Law to stop New York residents from being sent to the JRC, to keeping you updated about changes to the Settings Rule, we can make community living for all a reality. Here’s what we’ve been up to and what is coming up:

The start of this month marked the end of our COVID-19 case tracker, a decision we did not make lightly. For almost three years, ASAN has maintained a national database of cases of COVID-19 and deaths from COVID-19 in institutional settings, including nursing homes, group homes, and others. Unfortunately, due to changes in how and whether states and the media report data on COVID-19 cases and deaths, we do not have enough information to keep the Tracker up to date.

We also learned that in May, the Biden administration will end the national emergency and public health emergency (PHE) related to COVID-19. Ending the public health emergency will harm many people. The public health emergency status provided care to many people who need care to survive the pandemic. Ending it harms our communities. COVID-19 is not over. We will continue to do what we can to keep our communities safe through accessible information and continued advocacy, but this decision is harmful and disappointing.

While we work towards an FDA ban on the use of electric shocks, there is critical state-level legislation that would affect the Judge Rotenberg Center. The New York state legislature is reintroducing Andre’s Law (S.900 / A.1166), a bill that would stop the state from sending any more people to the JRC. We need our New York members to call your state legislators! If you aren’t a resident of New York, share this call to action! There will be other ways you can help #StopTheShock, but right now, we need your help to reach New York residents who can make their voices heard.

The time to honor those we’ve lost is fast approaching. This Wednesday, 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 click here to see a list of all vigils. Feel free to choose one local to you, or plan to join one whose time or platform works best for you.

There are more ways you can get involved with ASAN this year. Applications are open for the 2023 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 from July 10th through 19th. This year’s program will be held in person, if it is safe to do so. If we cannot have ACI in person, we will hold it virtually. Download your application today!

On March 17th, the HCBS Settings Rule will change. It’s important to know your rights so you can make full use of them! We’re hosting a webinar on Tuesday, March 21st at 1:00PM Eastern Time so you can learn about the changes and what it means for you. Register here to join us.

ASAN is proud to help future leaders in our community develop their advocacy skills, and to provide resources that people with disabilities can use to understand and weigh in on critical policy issues. We also value the opportunity to spend time remembering some of the people we have lost this year. Through all the different types of work that we do, and all the spaces we are trying to build, we are so proud to be in this fight for our community with all of you.

Sincerely,

The Team at ASAN

Not all policy work is visible – in fact, most of it is behind the scenes! Here’s some of what we’ve been working on:

Endorsed a Senate bill to be introduced by Senator Bob Casey that would require the school to pay the parents’ expert fees in IDEA cases
Signed onto the EVAC ACT, a bill asking the Federal Aviation Administration to establish standards for airplane evacuation that include people with disabilities
Supported changes to the Family and Medical Leave Act that would expand what medical leave can be used for
Submitted a letter urging the Office of Management and Budget to create a distinct classification for direct support professionals, which would help them get further support and investment

Members-only (but it’s for everybody)

This section is usually just for members, but this month we decided to make it available to everyone! This is an important topic, so we hope you enjoy learning more. Want the members-only section all year round? Check out our membership program!

In celebration of Black History Month, it’s important that we recognize and celebrate the contributions and accomplishments of Black disabled people throughout history. Facing the barriers of systemic racism and ableism, Black disabled advocates have fought to make their mark on society. Below, we profile just a few Black disabled leaders you should know.

Brad Lomax was a Black activist who played a significant role in the civil rights movement. He was also one of the first openly disabled activists in the United States. Lomax participated in the Freedom Rides, a series of bus trips organized by civil rights activists in 1961, to challenge segregation in interstate transportation. He was also involved in voter registration drives and other civil rights activities throughout the 1960s. A member of the Black Panther Party, Lomax joined the 1977 504 Sit-In in San Francisco, the longest-ever occupation of a federal building in the United States. Lomax became involved in disability rights activism, advocating for the rights of people with disabilities to access education, employment, and other opportunities. You can read more about Brad Lomax here.

Lois Curtis, a Black woman with intellectual and mental health disabilities, led a wave of change for people with disabilities in U.S. policy. . Curtis grew up in institutions for people with intellectual and developmental disabilities, where she was often subjected to abuse and neglect. Along with another institution resident, Elaine Wilson, Lois Curtis decided to sue for her right to receive services in the community. In 1999, Curtis won a landmark case, Olmstead v. L.C., which established the right of people with disabilities to receive services in the most integrated setting appropriate to their needs. This decision has had a profound impact on the lives of people with disabilities across the United States. Once she was able to leave the institution where she lived, Curtis became a prolific artist. In 2011, she traveled to DC to meet President Obama and present him with a painting. We sadly lost Lois Curtis last year. You can read our tribute to her here.

Roland Johnson was instrumental in shutting down Pennhurst, the horrific institution that he himself was sent to for 13 years. He was one of the founders of Self Advocates Becoming Empowered (SABE). We named our toolkit about community services after his famous “Who’s in Control?” speech. In this speech, Johnson talked about how people with disabilities — not our service providers or staff — need to have control over our lives. You can read more about Roland Johnson here.

Amanda Gorman is the youngest inaugural poet in U.S. history, and a powerful advocate for neurodiversity. Gorman has spoken openly about her experience as a Black woman with a speech and auditory processing disability, and has used her platform to advocate for those who are often marginalized and excluded from mainstream society. Her poetry and activism have inspired many, and she continues to be a powerful voice for change. You can read Gorman’s historic inaugural poem, “The Hill We Climb,” here.

Black disabled people have made significant contributions throughout history, and it is important that we recognize and celebrate their achievements. By doing so, we can work towards a more inclusive and equitable society, where all individuals have the opportunity to thrive and succeed. Let us continue to uplift and support Black autistic and disabled voices, not only during Black History Month but throughout the year.

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