Many disabled people are understandably worried about what’s to come under the second Trump administration, especially if they receive benefits or supports through the government.
We don’t believe in sugarcoating things here. We know this could be very bad, which is why we want to provide you with as much information as we can so you can plan as best you can. While we keep an eye on what’s happening in this area, we can’t always update in real time. Executive orders, court cases, legislation, and the way agencies interpret the law can move very quickly and be highly confusing, so develop trusted sources you can use for up-to-date guidance.
When it comes down to it, many disabled people may be looking out for ourselves. That’s a sadly familiar place to be for many of us, including elders with lots of lived experience, but the good news is we don’t have to do it alone: The disability community is diverse, and our care and love for each other is boundless. We’re used to surviving by taking care of each other and will keep surviving despite disablism’s best attempts to erase us. This is a good moment for making and strengthening local connections and finding out which people and organizations around you are in this with you for the long haul.
If you have supportive parents or guardians, talk with them in depth about your worries and make strategic plans together. If your parents or guardians are not supportive—or even if they are!—locate your people now and make plans with them, especially if you think you may need assistance with tasks of daily living to stay safe and independent, a place to stay, or help getting to medical appointments.
Depending on where you are, there may be a number of people, groups, and services that fight for the rights of and provide direct services to disabled people near you, including independent living centersexternal link, opens in a new tab, statewide disability rights organizationsexternal link, opens in a new tab, peer support groups, senior centers, and patient advocacy groups. Finding community directly with each other and through mutual aid groups such as local mask blocsexternal link, opens in a new tab that grew during the start of the coronavirus pandemic is also a good idea. Resources don’t have to be disability-specific, either: A resource is any person or group who shares your values and interests, from Wednesday night knitting at the library to a coffee shop that’s youth-friendly. We also have to put in a plug for Scarleteen’s boards, where we cultivate a supportive and friendly community online. Some of this kind of organizing has never been on the internet or may move offline, so developing strong offline networks before you need them is an extremely good idea.
The Scarleteen Safety Plan is a great starting point for making these kinds of plans if you’re feeling overwhelmed and need some guidance, as is the section of Rebel Well for everyone. The Rebel Well: Healthcare section also has information you may find helpful. We also recommend that you read up on digital security to keep yourself safe, whether you’re researching something, helping a friend, or reaching out for help.
Meanwhile, the Trump administration is already removing or altering information on many government websites as it rolls back or threatens civil rights and the social safety net. It’s a good idea to save information online that you may want to use later, such as recommended vaccination schedules or guidance about your rights at school, printing it out so you can have a hard copy as much as possible.
What to know about legal changes under the Trump administration
Where you live may make a big difference when it comes to your legal rights and access to or assistance with care. Some regions and states have more robust protections than others, or have policies that meet or exceed federal standards and will go to court to defend them if necessary. Others are actively working to undermine your rights.
Some examples of things that may be affected on the federal level include:
- Programs: Medicaid; Medicare; Social Security; Supplemental Nutrition Assistance Program (SNAP); and Women, Infants, Children (WIC)
- Laws: The Affordable Care Act of 2009 (ACA or “Obamacare”); the Health Insurance Portability and Accountability Act of 1996 (HIPAA); the Americans with Disabilities Act of 1990 (ADA); the Individuals with Disabilities Education Act of 1990 (IDEA); the Rehabilitation Act of 1973; and the Civil Rights Act of 1965
- Agencies: Departments of Justice, Education, Housing and Urban Development, and Health and Human Services; the Centers for Disease Control and Prevention; and the Centers for Medicare and Medicaid Services
On the state and local level, many programs operate with support from federal funds, and could experience disruptions in service. This could result in cuts to hours for personal care attendants, for example. If you use local services or resources, ranging from community meals to a local independent living center, you may want to check in with them about their funding status and what might happen if they lose federal funds.
Changes to these programs could mean your access to health care, including doctor visits, medications, home health aides, durable medical equipment, coverage for procedures, and more could be affected. As much as you can, keep clear personal records, stockpile items you might need, and try to locate alternative sources for things where you can. Discuss your concerns with your doctor and care team so you can make plans now for what to do if you lose your health insurance, support services are no longer available, or other events disrupt your life.
Our Dealing with Doctors article has important information you can use in self-advocacy with health care providers. If you are disabled (especially if you have a mental health condition, HIV, or cognitive/learning disability such as autism or ADHD), trans, intersex, or have complex medical issues, it’s a good idea to talk to your health care providers about your safety.
If you are in the process of evaluation for or diagnosis of a specific condition, talk to your doctor about how you want to move forward. Having documented evidence of a disability historically has helped people access things we were entitled to by law, such as health care and accommodations. But some of this can or could work against you, like by being used to deny you health insurance or to profile you. It may be possible for your doctor to be careful with wording on your chart to provide the minimum amount of information required to get you the things you need.
Your civil rights as a disabled person, including your right to a free, appropriate public education that meets your needs; your right to accessibility in public accommodations such as transit and restaurants; and your right to accommodations at work could also be at risk. This is especially true if you are a multiply-marginalized disabled person, such as a trans person concerned about bathroom access or a Black disabled person facing school segregation. Other sections of Rebel Well address concerns specific to other marginalizations.
If you have documented access needs, such as in an Individualized Education Plan (IEP) that reviews your needs and accommodations at school, or a formal agreement at work that spells out the accommodations you should receive, review those documents and make sure they are up to date. If there’s any uncertainty or your access needs have changed, request revisions. As much as possible, keep them vague: They should discuss the specific need to accommodate, not your diagnosis. Also make sure you know who your allies are in these settings. Maybe it’s the librarian who helps you find information or the union steward at your job.
On Helping Others
Mr. Rogers tells us to look for the helpers, but it’s important to remember that we can be helpers, too, and this value is especially important in the disability community, where our support and care for each other saves lives. Build solidarity and community with the people around you, and be the one who reaches out a hand when someone needs one, even if “all” you’re doing is pointing someone towards a resource they can use or splitting a cookie with a pal who looks sad. Know too that mutual aid in the disability community can look very different than it does in nondisabled spaces, as Leah Lakshmi Piepzna-Samarasinha wrote for the Disability Visibility Projectexternal link, opens in a new tab in 2021. If you want or need some help learning how to do this, including how to find local community, we’re happy to talk with you and help in Scarleteen’s direct services.
