A Self-Advocate’s Guide To Advanced Health Directives

Transcript:

A Self Advocate’s Guide to Advance Health Directives

Created by the Vermont Developmental Disabilities Council

What is this guide for?

• This guide helps you think about making a plan for your healthcare.

• Having a healthcare plan in place can help people make decisions when you cannot speak for yourself.

• It is a written plan for what should happen if you get sick and you cannot say what you want for healthcare.

• It is important to tell your family, friends, and support people about your health decisions when you are well.

What is an Advance Health Directive?

• It is a written plan for what should happen if you get sick and you cannot say what you want for healthcare.

• It is important to tell your family, friends, and support people about your health decisions when you are well.

• It is a written plan for what should happen if you get sick and you cannot say what you want for healthcare.

• It is important to tell your family, friends, and support people about your health decisions when you are well.

How do you make an Advance Health Directive?

Step 1: Think about what matters to you

• What is most important to you as you get older?

• Who do you trust to make medical decisions if you are not able?

• What does a good day look like for you?

• What worries you about your future health?

Talk with your healthcare provider about what is important to you if you get sick.

This includes:

• A written form will help guide those who care for you. They will not have to guess what you want if you are not able to tell them yourself.

• An Advance Health Directive is a way to advocate for yourself.

Step 2: Name a healthcare agent who you trust to follow your decisions

People with disabilities have a right to make choices about their healthcare.
Check in with a lawyer if you have a legal guardian.

A healthcare agent must:

• Be 18 years or older

• Be someone you trust with your medical information

• Be confident asking doctors questions

• Be willing to speak up about your decisions

Examples: Parents, a friend, a brother or sister, a neighbor.

A healthcare agent is a medical decision-maker that you choose in advance.
They advocate for your wishes if you are not able to speak for yourself.

What you say in your advance directive will help others know:

• The people or things that bring you comfort when you are sick

• Where you want to get healthcare:

  • Hospitals

  • Rehab Centers

  • Home

• Your decision about organ and tissue donation

• What happens to your body after you die, such as funeral or burial plans

Your healthcare provider cannot be your medical decision-maker.

Step 3: Write all your wishes down on a form with help from your provider

Write down what you want your healthcare provider to do if you are not able to speak for yourself.

Try finishing this sentence:
“What matters to me through the end of my life is ______________.”

Answering this question can help others take good care of you.

For example:

• Being able to spend time with loved ones

• Some people want to be kept alive as long as possible

• Some people prefer to focus on comfort, even if that means dying sooner

Talking About Feelings

• It’s okay to feel uncomfortable, nervous, or curious about serious illness or death.

• Ask lots of questions so you have all the information you need.

• You can always change your Advance Health Directive if you want to.

The conversation about your healthcare can change as you grow older.

To get the best care, keep your healthcare providers, friends, and family updated.

To fill out an Advance Directive, visit:

http://www.ihppvt.org

What is The Inclusive Healthcare Partnership Project (IHPP)?

The Inclusive Healthcare Partnership Project believes everyone should have tools to support their own health. This includes:

• Health info that’s easy to understand

• Healthcare providers trained to work with people with a wide range of disabilities

IHPP Goals:

1. Create plain language health information by and for people with developmental disabilities

2. Help nurses, doctors, and providers communicate well with neurodiverse patients

Last revised: January 2025

This project is supported in part by the Administration for Community Living (ACL), U.S. Department of Health and Human Services (HHS).
Award: $95,319. Contents do not necessarily reflect views of ACL/HHS or the U.S. Government.