1.Instructions for completing the survey

The Mississippi Public Health Association (MPHA) has received a grant from Special Olympics International (SOI) entitled “Systems Change in Inclusive Health.” The purpose of the grant is to educate people in our state about how to include individuals with intellectual disabilities (IDD) in their work in order to make everyone healthier. Our goal is to have a plan for Mississippi by the end of this project year that clearly makes working with the IDD population a part of the bigger picture of public health in the state. The grant period is from now until the end of June 2026.

We need your help so that our work is based on what we can work together to do to make the systems that you access for their resources work together better. We will only use the survey results to inform the MS work plan. We will not use your name in any way in our report.

For self-advocates, please take a few minutes of your time to complete the survey to the best of your ability, with or without help from someone else. It is ok if you need assistance.

For parents/caregivers, we would love your perspective as well. Please complete the survey based on your experience in coordinating health care for your self-advocate.

The survey will close on April 8, 2026.

Please put your name and address in the comment box. We will NOT share this information with anyone else. We need the information in case we need to get in touch with you.

2.Check the box that describes your role in responding to this survey.

Individual with IDD/self-advocate

Parent/caregiver

3.How often do you need to go to the doctor, hospital, or clinic in a year? For parents/caregivers, please respond as to how often your IDD self-advocate needs to go to the doctor, hospital, or clinic. Please select only one response.

1-3 times a year

4-8 times a year

More than 8 times a year

4.Check any of the items below that you have to think about when you are planning to go to the doctor, hospital, or clinic. Check all that apply.

How I am going to get there (transportation)?

Who is going with me?

How long will I be there?

What will I learn there?

Will they be kind to me?

Will I need to go to a different doctor or clinic after this visit?

Other (please add any other things you think about when planning to go to the doctor, hospital, or clinic).

5.What do you like about going to the doctor, hospital, or clinic? Check all that apply.

My doctors are nice

The nurses and therapists are nice

I like to know about my health

I like how easy it is to understand why I am there

Other- Please tell us other things that you like about going to the doctor, hospital or clinic.

6.What things do you not like about going to the doctor, hospital, or clinic? Check all that apply.

The doctors do not talk directly to me

The nurses and therapists do not talk directly to me

I do not like shots or getting my blood drawn

I do not like to be around other patients there

Other. Please tell us if there are other things you do not like about going to the doctor, hospital, or clinic.

7.If you could give advice to the doctor or nurse, what would you tell them to do differently to make the visits better?

8.Please write anything else you would like us to know here.

If you are a self-advocate, the survey ends here. Thank you for your time and your help!

If you are a parent/caregiver, please continue.

9.If you could change anything about the way that the health system works for your person with IDD, what would that be? You can identify up to five things.

10.How can we develop this plan for Mississippi in a way that best helps you as you care for your person with IDD?

11.Is there anything else we need to know?

Thank you for your time.