Self-advocates with IDD and Mental Health Needs Wanted

Texas Complex Mental Health Needs (CMHN)

· Would you like to help us test our new Texas Complex Mental Health Needs website?

· Do you live in Texas?

· Do you have mental health needs?

· Would you like to get gift cards for being a tester?

If you do, please fill out this form.

We will ask you to answer some questions. If you are picked, you will test our website. You will be asked for your feedback. Your feedback is important.

Thank you!

Help amplify self-advocate voices!

Our Seen and Heard: IDD Community team has submitted proposals for SXSW and SXSWEdu 2023. Community voting is an important part of getting picked. Please support us by clicking the links below, voting thumbs up, and leaving a comment. Comments help evaluators know that this topic is important and interesting. Voting closes August 20, so vote soon. Thanks!




Handling Grief – A Personal Story

Person supporting another person

James Meadours is a self-advocate from San Antonio, Texas. He talked to his friend Cindy Burrow about grief. We hope others can learn from James and handle their own grief.

“I was shocked when I found out my uncle was in the hospital. And I didn’t really understand what happened to him because no one explained. I thought he was healthy. I was so glad I was in my aunt and uncle’s life. That was a hard loss. Since I reconnected with them it was one of the best things that happened because I have someone to support my work.”

James was upset because his cousins did not want him to travel to visit his uncle. “I think they were trying to protect me because they thought I’d be upset and emotional and they’d have to support me. But I wanted to be there to support them. Because of what happened to my mom. They thought I would be very upset because it was similar.” (James’s mother died suddenly when he was a teenager.)

James has not told many people about his loss. “I think I’m afraid some people may not respect my boundaries. They want to give me a hug and stuff like that. Some people aren’t close like real friends.”

Cindy asked James if he thought it was hard for people to respect how others want to grieve. James answered “Some people want people to grieve the way they would. Like if someone would want a hug that’s what they want to give. But they don’t ask permission or listen to me when I tell them what I need. They don’t understand what boundaries are and what being a true friend is.”

James has some advice for people who now have to grieve alone. He suggests people write to share their feelings. He also says to find a person they could trust to talk to. “Really respect your boundaries when you tell them not to share what you say with others. James said to talk about your feelings. “Don’t let it eat inside of you. When my mother passed away, I didn’t have anyone and that was hard.”

James’ advice to people who are grieving is to listen to what the person needs. Let people know what happened to your loved one or close friend. Take the time to tell them and help them. “I have a friend whose roommate passed away, and people didn’t take the time to tell him and help him. I think people didn’t know how to help because he does not use words. But we need to be honest and take time to help people.”

A Roadmap to Mental Health

For the past year, we have worked hard to learn as much as we can about the mental health needs of people with IDD. We are finally ready to publish our results: Complex Mental Health Needs of People with IDD: A Gap Analysis Framework and its Texas-specific supplement. To create these works, we analyzed hundreds of sources. We organized our findings into key mental health domains:

– Awareness
– Access
– Diagnosis
– Quality of Care
– Treatment

We also looked at the special ways people experience mental healthcare, including people of different races, incarcerated people, those living in rural areas, and more. We addressed special issues like Covid-19, family stress, and trauma/PTSD. We also found resources, organizations, and tools available in Texas to help people with IDD get good mental healthcare. And we showed where there are still many gaps in service.

We hope this work will shine a light on this important issue. People with IDD have more common and more serious mental health care challenges than others, and they need support now. We want everyone-policy makers, legislators, researchers, practitioners, and self-advocates-to use what we’ve learned to fill the gaps.

You can download both publications below. Please share this post far and wide to let everyone know about these valuable resources.

Special thanks to the project team members and self-advocates who helped create the framework: Charles Lee Baird, Cynthia Burrow, Eduardo Hernandez, Alisa Miller, and Sarah VanMattson. And huge thanks to the Texas Council for Developmental Disabilities for funding our work.

Meet Alex Bradley

The program you’re building will give us the many hands we need to make this work…lighter for those struggling under the system and fighting to improve it.”

Alex Bradley

Alex Bradley served on our Complex Mental Health Survey Workgroup. Their job was to help make our needs assessment survey easier to read and answer. Alex lives in a rural community outside of the Dallas-Fort Worth Metroplex. She has Aspergers, ADHD, Auditory Processing Disorder, C-PTSD, and chronic depression. She also has several chronic, invisible, rare diseases. She is the President of The Self-Determination Group and a member of the Board of Texas Advocates. Alex enjoys reading, watching YouTube videos, and playing PC video games. Before the pandemic, when she had the time and space, she also enjoyed quilting, sewing, and swing dancing.

Q: What are some of your hopes for the future?

A: Short term goals are finding a clean, safe place to live when my lease is up, getting more hours at work, getting better medical treatment now that I’ve finally gotten health insurance. It’s going to take an incredible amount of work and luck, but I hope in the next few years I’ll be able to go back to grad school. I’ve always wanted to be a scientist.

Q: What are some challenges you have as a person with both a disability and mental health conditions?

A: The social safety net in Texas is nearly non-existent. I usually have several days a month where I can’t get my psych meds that I spend in withdrawal. It’s bad enough that my coworkers have a saying that “25% of an Alex is better than no Alex!”

Q: What was your favorite thing about working on this project?

A: It was honestly really wonderful to see how much you all cared about our perspectives and experiences, and how you really listened and integrated the information we gave you to make a better survey. Not only does the finished product make sense to neurodiverse people, written in literal language we can all understand without any double meanings, but the way the answers are structured will give the scientific community meaningful data about our struggles so they can figure out how to really help us.

Q: Did you feel you were listened to? How do you feel your contribution will improve this project/topic?

A: I very much felt listened to. I think personally my most effective contributions were giving the autistic perspective and giving feedback on how changing the phrasing and order of the questions in the mental health survey is going to affect how people answer them so that the researcher will have better quality data at the end.

Q: How do you think this project will help other self-advocates?

A: Mentorship is an extremely important aspect of advocacy work, for any cause. It gives people community, a connection to the otherwise untaught history of the movement, an understanding that progress was made before and can be made again. Specifically with the disability movement, it shows you all the ways you can advocate for yourself and others despite your individual setbacks. You can learn how to get your message across, how to speak to power, even when you’re nonverbal.

Q: Is there anything else you want to tell us about the project and your work?

A: I’m really glad you guys decided to do this work in Texas, specifically. Our state has a lot of work that needs to be done before disabled people here are treated equitably in society, especially compared to other US states. The program you’re building will give us the many hands we need to make this work not just lighter for those struggling under the system and fighting to improve it, but in some cases will make the work just possible. One of the reasons our voices are ignored is because we aren’t effectively speaking together, and I think your program will help immensely with that.

Check out The Self Determination Group on Facebook and Texas Advocates’ website. We’d love to have you join us!

Make Your Voice Heard

Texas Mental Health Survey

We are helping Texas improve mental health services for people with intellectual and developmental disabilities. We know people need better mental health care. You can help!

To start, we need Self-Advocates, family members, friends, and professionals to tell us about mental health needs.

If you are not a self-advocate, please take the survey as if you are.

Encuesta de salud mental de Texas

Estamos ayudando a Texas a mejorar los servicios de salud mental para personas con discapacidades intelectuales y del desarrollo. Sabemos que las personas necesitan una mejor atención de salud mental. ¡Puedes ayudar!

Para empezar, necesitamos auto defensores, familiares, amigos y profesionales que nos informen sobre las necesidades de salud mental.

Si usted no es un auto defensor, responda la encuesta como si lo fuera.

Important Notes

This survey was created with lots of help by Texas Self-Advocates.
This project is funded by the Texas Council for Developmental Disabilities.

Notas Importantes

Esta encuesta fue creada con mucha ayuda de los auto defensores de Texas.
Este proyecto está financiado por el Consejo de Texas para Discapacidades del Desarrollo.

Texas Advocates Conference 2020

What a thrill to speak at the Texas Advocates Annual Conference! We missed seeing our friends and colleagues in person. But we were pleased to share information about keeping your mental health in good shape. We are also excited to connect with self-advocates as we move forward with our project.

For those who missed it, here’s a snippet from our presentation. This short video shows how different people are working on mental health during the pandemic.

Many thanks to Brooke, Deborah, Annessa, and the self-advocates, sponsors, and other who made this a great conference!

Project Welcome: Complex Mental Health Needs

Did you know that people with IDD are more likely to also have mental health challenges? And that often, these challenges are never diagnosed?

Strategic Education Solutions (SES) and University of Massachusetts Medical School (UMMS) are working on a new project about mental health. We will research what’s happening now in mental health care for people with IDD. We’ll also do a survey, asking self-advocates about their experiences. Then, we’ll start building tools and training to help self-advocates and their families and friends get better mental health care. We’ll also teach service providers, mental health specialists, and others to serve people with IDD better. Stay tuned for updates!

Our Team