Advanced Directives Disability Guide & Resources

Let’s be honest—thinking about medical crises isn’t easy. None of us like to imagine a moment when we can’t speak for ourselves. But if you live with a disability, you probably already know how quickly assumptions can creep into medical care. Doctors sometimes mistake disability for suffering. Families—desperate and emotional—might disagree about “what’s best.” And in the middle of it all, your voice can get lost.

That’s why advanced directives aren’t just paperwork. They’re your anchor. They say: Here is who I am. Here is what I want. And here is how I expect to be treated, no matter what happens.

Why They Matter—Especially If You Have a Disability

Picture this: you’re rushed to the ER. Doctors gather around. A decision needs to be made fast. If you haven’t left clear instructions, that decision could be based on someone else’s assumptions—about your “quality of life,” about what they think you’d want, about what they think is “reasonable.”

Advanced directives shut down that guesswork. They tell your providers, your family, even the courts if necessary: this is not up for debate. These are my choices.

As one disability rights advocate with a progressive neuromuscular condition put it:

“Having an advanced directive in place means I don’t have to wonder if my wishes will be respected when I can’t speak. That peace of mind is priceless.”

And we saw just how urgent this is during COVID-19, when some states proposed “crisis care standards” that put people with disabilities at risk of being deprioritized. With directives in place, you’ve got legal protection against those biases.

The Tools in Your Toolkit

Advanced directives aren’t one form—they’re a set of tools. Together, they create a safety net. Let’s walk through them.

1. Living Will: Your Voice in Writing

This is your chance to spell out what treatments you would—or would not—want. Ventilators? Feeding tubes? Dialysis? Resuscitation?

For people with disabilities, it’s critical to clarify what’s normal for you. For example:

• “I use a ventilator at baseline. That doesn’t mean I don’t want treatment.”
• “Feeding tubes are part of my daily life—they shouldn’t be mistaken as a sign to withhold care.”

This prevents doctors from misinterpreting your baseline as a reason not to fight for you.

2. Healthcare Power of Attorney: Choosing Your Champion

A living will covers specific situations. But life is messy, and not every scenario can be predicted. That’s where a healthcare power of attorney (or healthcare proxy) comes in.

This person is your voice when you can’t speak. Choose someone who:

• Knows your disability experience inside out.
• Understands your values—not just your treatments.
• Can stand strong under pressure if doctors or family push back.

For many, this is a spouse or close friend. But choose carefully. You need someone who will honor your wishes, even if their heart is breaking.

3. POLST: Orders Doctors Must Follow

Unlike a living will, which sometimes gets tucked away in a folder, POLST forms are actionable medical orders. Emergency personnel are trained to follow them on the spot. They’re especially helpful if you have a progressive condition or frequently interact with EMS.

4. Mental Health Directives: Care for the Whole You

If you live with mental health challenges, psychiatric advance directives allow you to say:

• Which medications help you.
• Which ones harm you.
• Where you’d prefer to receive care.
• What approaches help you feel safe during crisis moments.

This is your chance to protect yourself from repeating harmful experiences and to guide providers toward care that actually helps.

Adding Disability-Specific Instructions

Most standard forms don’t ask about disability realities. That’s why adding your own “disability supplement” is crucial. This can include:

• Your baseline symptoms (so they aren’t mistaken for emergencies).
• Your assistive technology (ventilator, mobility aids, AAC devices).
• Communication preferences (sign language, eye gaze tech, or writing board).
• Sensory sensitivities (important for people with autism, PTSD, or other conditions).

This way, your care team doesn’t fill in the blanks with assumptions. Instead, they see you.

Creating Your Directives: A 5-Step Roadmap

1. Reflect Deeply
   What does quality of life mean to you? Independence? Comfort? Time with loved ones? Your faith? Write it down.
2. Choose Your Advocate
   Pick someone you trust, who knows your disability, and who won’t back down in a high-stakes moment. Talk through scenarios together so they feel prepared.
3. Spell Out Your Wishes
   Don’t settle for vague phrases like “no heroic measures.” Be specific:

• “I want temporary ventilator use with a weaning plan—but not indefinite life support without recovery.”
• “Feeding tubes are acceptable short-term but not lifelong.”

4. Meet Your State’s Legal Rules
   Every state has requirements—like witnesses or notarization. If you miss those steps, your directives may not be enforceable.
5. Share and Store Them
   Give copies to your advocate, family, doctors, and upload them into your electronic health record. Carry a wallet card or wear a medical ID bracelet noting you have directives in place.