Author: Autism Today News.

This April, the government finalized a lot of federal rules that matter to our community. Federal rules are made by the executive branch to make sure people and groups follow laws.  Some of the rules finalized this month make it easier to get and keep Medicaid, SSI, and other benefits. Others make sure that the services and supports that we get are useful and will help us. These are both important ways to make sure that disabled people are able to use the programs that let us live in our communities. Some of these rules also say what the government,…

ASAN has prepared a comprehensive toolkit to empower people with disabilities, their families, and other disability advocates to help youth with disabilities manage their own health care as they transition to adulthood. As ASAN found in our 2013 report, youth with intellectual and developmental disabilities face a variety of barriers to accessing and managing their health care when they reach adulthood. Youth may no longer have access to the same source of health coverage that they had before they turned 18. They may have difficulty finding adult-oriented health care providers who understand their health care and communication needs. And they may not…

Mission Statement ASAN and the Policy and Analytics Center (PAC), based at A.J. Drexel Autism Institute at Drexel University, will hold a symposium about autism research. Autistic people will tell researchers what we want and need from future research. Together we will create a plan for research and share it with everyone. Autistic people will lead the plan. We will talk about how we do research. We will focus on participatory research. Participatory research is when the autistic community and researchers work together to design, do, and share research. We will also look at research led by autistic people. We…

These comments are available as a PDF here. Leslie KuxAssociate Commissioner for Policy Division of Dockets Management (HFA-305)Food and Drug Administration5630 Fishers Lane, Rm. 1061Rockville, MD 20852 Re: Docket No. FDA–2023–N–3902 for “Banned Devices; Proposal to Ban Electrical Stimulation Devices for Self-Injurious or Aggressive Behavior.” Dear Food and Drug Administration, The Autistic Self Advocacy Network (ASAN) is grateful for this opportunity to provide comment on the proposed rule from Food and Drug Administration (FDA), “Banned Devices; Proposal to Ban Electrical Stimulation Devices Used to Treat Self-Injurious or Aggressive Behavior.”1 ASAN is a national, autistic-led disability rights organization that serves autistic…

ASAN May Newsletter Dear friend, This month saw a total solar eclipse, some of the strongest auroras in centuries, and plenty of policy work fighting for our community’s rights! Check out what we’ve been working on this month and the opportunities ahead! This month, we had the opportunity to #StopTheShock at the Judge Rotenberg Center for good! The Food and Drug Administration (FDA) announced a proposed rule to ban electrical stimulation devices for self-injurious or aggressive behavior, and they asked for public comments on the rule. ASAN submitted comments encouraging the FDA to ban the device, and so did many…

The Board of Trustees of the Autistic Self Advocacy Network is pleased to announce that Colin Killick will be stepping into the role of Executive Director beginning November 1st. Colin comes to ASAN with extensive leadership experience in the disability rights movement. For the last five years, he has served as Executive Director of the Disability Policy Consortium, Massachusetts’ main statewide disability rights advocacy organization. In that role, he has worked to advance the rights of people with disabilities across a broad variety of contexts, including a successful campaign to grow state housing voucher funding for low-income people with disabilities,…

The Autistic Self Advocacy Network (ASAN) condemns the United States Supreme Court ruling on two combined cases, Loper Bright Enterprises v. Raimondo and Relentless v. Department of Commerce. The decision overturns a decades-old legal principle known as the Chevron Doctrine, which gives federal agencies the authority to reasonably interpret ambiguous laws when they create federal regulations. These regulations are made legally binding through a rulemaking process that is shaped by the public servants within federal agencies, the input of subject area experts across fields, and anyone who chooses to share their opinion. Instead, federal courts will now have the final…

ASAN Toolkit on Improving Home and Community-Based Services (HCBS) ASAN has published a toolkit for advocates, families and administrators on how to ensure that people with disabilities receive Medicaid-funded Home and Community-Based Services in integrated settings that offer full access to the community. Home and community-based services are an important source of support for many people with disabilities who need help to live in the community. But so far, many of these services have been provided in restrictive or group settings, instead of people’s own homes, communities, or integrated workplaces. In January, the Centers for Medicare and Medicaid Services (CMS) announced a new…

There are many therapies for autism, along with a significant amount of funding for research, development, and implementation of these therapies. However, it often remains unclear whether these therapies actually help autistic people. Autistic people rarely have a voice in creating and shaping these therapies, and there is very little ethical guidance for people who practice autism therapies that accounts for the needs, experiences, and perspectives of autistic people. Autistic people should have the ultimate say in what autism services focus on. ASAN’s white paper,  “For Whose Benefit?: Evidence, Ethics, and Effectiveness of Autism Interventions,” aims to help close this…

While the Eagles are set to play in the first-ever NFL game in South America on Friday night, the organization has been making its mark in Brazil since it arrived earlier in the week. On Thursday, the Eagles Autism Foundation hosted a roundtable in São Paulo to discuss the state of autism research and care in Brazil. The roundtable was hosted as part of the Eagles’ connection to the Brazilian community that has been growing throughout the week. The panel for the discussion was comprised of Eagles Chairman and CEO Jeffrey Lurie and five Brazilian-based medical researchers who have backgrounds…