man with intellectual disability meeting with his female primary care doctor reviewing a treatment plan on a laptop

We want you to be healthy.

We want to help you get the best health care!

Let's work to make healthcare better for people with intellectual or developmental disabilities (IDD).

Let's learn together.

Video

Me and My Doctor

Watch this video on ways you can take charge of your health care before, during and after your doctor visit.

Learn your rights.

The ADA is the American with Disabilities Act.

It says that EVERYONE has the right to get the health care they need.

It says YOU DESERVE RESPECT and DIGNITY.

The ADA law was passed in 1990 but change is slow.

Learn about groups who work on the rights of people with disabilities.

The Governor's Council https://www.in.gov/gcpd/

Self-Advocates of Indiana https://saind.org/

Find ways to be a person who helps.

Read the Self-Advocate's Guide to the ADA. It is from the Autistic Self-Advocacy Network.

What is the ADA and Why Should I Care?

Healthcare Bill of Rights

Here is a Healthcare Bill of Rights for people with IDD from the SAFE initiative:

It says you have the right to:

Be seen as a person first.
Get care when you need it with respect and kindness.
Be part of the decision-making. Give consent (or assent) or refuse it.
Get care that is really set up to fit your needs.
Be talked to in the way you prefer and so you can understand.
Use the support and technology you need.
Speak up for your own needs and interests.
Get care that does not cause you trauma.
Get the right care for pain and anxiety.
Get care that is free from restraint, force, abuse, or neglect.

This easy read guide is about healthcare rights from Australia.

Note: if you need to file a complaint in the U.S., you can first call the patient advocate office in your health system.

Read the Guide Here

Health Care Decisions

Do you make all your own decisions for health care?

Does someone you trust help you?

Do you have...?

A decision support person who you trust?
A health care representative or power of attorney?
A guardian?

Check out info on these supports on the FUNCTION page.

Make sure that your doctor knows who you want to help you.

If you are age 18 or over, you can say that you want someone you trust to be part of your care.

When you check in at the doctor, bring a copy of any legal papers like:

Living will
Health care representative
Power of attorney
Supported decision maker
Guardian

The office will copy them into your chart.

This helps them keep track of who you want to help.

You do not need to have legal papers to have someone help you.

You can invite whomever you want to come with you to your visits.

You can approve someone to talk to your doctor for you between visits, even if you do not have legal papers.

You will need to sign a consent to say it is okay. Ask your health care team for this paper.

What is consent?

Consent is choosing whether to say yes or no to something that involves you.

Once you are 18, you will be asked to say yes or no to choices in healthcare.

It is important to understand the choice. Get help, if you need it.

Consent Easy Read

IC4 Consent to Treatment handout

Man getting his blood pressure taken by woman nurse

Good, Bad and Necessary Touch

You may already know the rules of Good and Bad Touch.

Do you know about Necessary Touch?

Good touch makes you feel happy, safe, or comfortable.
Bad touch makes you feel forced, hurt, or afraid.
Necessary touch can describe touch that might hurt or scare you but you still need to keep you healthy and safe.

For example, you might choose that you need to have a blood draw for your health even though you know that it may hurt some.

Another example, you might choose to go to the dentist to get a cavity filled even though you know it may hurt a little.

You may ask others you trust to help you decide about necessary touch.

Good Touch, Bad Touch Easy Read

Privacy and disclosure

The word "confidential" means we keep your personal info "private". This means we will not share it with others. Anyone who works in healthcare must keep your info private. If we want to share your info to help you, we will ask you first. We may share info in some emergencies without asking you:

if you get really ill and can't speak,
if you are not safe, want to hurt yourself or someone else,
if you have an illness that others can get from you, or
if there is a legal summons to give it.

The word "disclosure" means you make a choice to tell someone about your disability.

Usually, a person will tell another person about their disability when they want to ask for special support for that disability.
Your doctor will want to know about your disability.
In healthcare, most disabilities can increase chances of other health issues.
If your doctor knows about your disability, you can work together to prevent or treat other issues early.

Health Services and Confidentiality Easy Read

The three other sections of these page talk about before, during and after the visit:

Learn how to find a clinician, make an appointment and prepare for your visits

Before the Visit

Learn more about what to expect during your visit and different tests you may have to do.

Learn more about what to do after your visit, how to understand your health care plan, how to call the office with any questions you have, and use stoplight action plans.