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Sneak Peek!

Seen and Heard: IDD Community

We are excited to share a new part of our work. We are making videos about sexual assault prevention and recovery. Our videos are made by and for people with IDD who are survivors or just want to learn about staying safe. Listen to our team co-leader, James Meadours, talk about why this work is so important.

This is just a preview, but we’ll be posting more videos in the near future. Be sure to follow us so you don’t miss out:

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.”

New Publication!

After a year of hard work, we have published Sexual Assault Prevention and Response for People with IDD: A Gap Analysis Framework. This publication describes challenges and opportunities related to:

-Risk Factors
-Awareness
-Prevention
-Reporting
-First Response
-Adjudication
-Recovery

People with IDD are at a far greater risk of sexual assault than others. We hope our work will help those in the field begin to make a difference. Check out this and other publications on our new Find Resources page.

Special thanks to our amazing research team!

Photos of Cynthia Burrow, Leigh Ann Davis, James Meadours, Alisa Miller, John Rochford, and Sarah VanMattson

Free Peer Support Still Available

If you receive or are on the interest list for Medicaid Waivers in Texas, our Peer Support Specialists can help you:

– Make a plan for your life.
– Solve problems and make decisions to stay on track.
– Find services and supports to help you reach your goals.

Service is free of charge. Here are the steps:

1. Fill out an application that tells about you.
2. Then, we will match you with a peer support specialist.
3. Starting in November, you will meet with your peer support specialist and their coach on Zoom. Each meeting will be 45 minutes.
4. If it’s a good match, you can have more meetings.

Click the link above to fill out the application. You can get help from a trusted person if you need it. You can also get help from our Peer Support Coach by clicking this link and emailing him:

Email Virtual Pilot Coach

Fill out your application soon–space is limited.

Please share this information with anyone you think might want free peer support!

People Who Communicate Without Speech: New Info on Sexual Assault Prevention & Response

We are proud to share a new white paper. It describes the needs of people who communicate without speech. Their needs are different for sexual assault prevention and response. Many therapists want to work with people who communicate without speech. They may not know how. We hope this paper will help.

We learned:

– It is hard to know when people who communicate without speech have been assaulted. The people around them must watch for signs.
– Behavior might change. The person might avoid others. They might have new fears.
– Sometimes these behaviors are misunderstood. People might miss the real cause.
– Supporting people who communicate without speech is hard.
– Therapists must help the person trust them. They must believe the person.
– Therapies must be person-centered. Some that might work well are art therapies and EMDR.

We hope this white paper will help therapists work better with clients who communicate without speech. Please share this information!

Get Free Help Building Your Life!

If you receive or are on the interest list for Medicaid Waivers in Texas, our Peer Support Specialists can help you:

– Make a plan for your life.
– Solve problems and make decisions to stay on track.
– Find services and supports to help you reach your goals.

Service is free of charge. Here are the steps:

1. Fill out an application that tells about you.
2. Then, we will match you with a peer support specialist.
3. Starting in November, you will meet with your peer support specialist and their coach on Zoom. Each meeting will be 45 minutes.
4. If it’s a good match, you can have more meetings.

Click the link above to fill out the application. You can get help from a trusted person if you need it. You can also get help from our Virtual Pilot Coach by clicking this link and emailing him:

Email Virtual Pilot Coach

Fill out your application soon–space is limited.

Please share this information with anyone you think might want free peer support!

Job Opening: Peer Support Specialist

Join our great team of peer support specialists! It can change your life and the lives of other self-advocates!

Peer support specialists will:

– Learn how to do the job.
– Get matched with clients who need help.
– Meet with clients online or in person to help them build the lives they want.
– Fill out a log to track their work hours.
– Get support from a coach to do all these things.

Peer support specialists will be paid $15/hour. They will be paid for training and for hours they work with clients. They will work between 5 and 7 hours per month from August 2021 – March 2022.

Peer support specialists must:

– Be strong self-advocates.
– Like helping people.
– Know or learn how to use email, Zoom, and the web (we will teach you).
– Like working with a coach or teacher.
– Have or be on the interest list for a Medicaid waiver: Community Based Alternatives (CBA), Community Living Assistance & Support Services (CLASS), Deaf Blind with Multiple Disabilities (DBMD), Medically Dependent Children Program (MDCP), Texas Home Living (TxHmL), Home and Community-based Services (HCS); or Community First Choice (CFC).
– Have experience getting services in one or more areas: Person-directed planning, Employment/Education, Transportation, Housing, Independent Living Skills.

To apply, fill out the application online by clicking this link:

Peer Support Specialist Application

You can get help from a trusted person to fill out the application. You can also get help from our Virtual Pilot Coach by clicking this link and emailing him:

Email Virtual Pilot Coach

Please share this information with anyone you think would be a great peer support specialist!

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.

Seeking Virtual Coach for Peer Support Project

Our first pilot was a success. Now we want to expand!

We are seeking a Virtual Coach. The coach will recruit and match new peer support specialists and clients. They will help peer support specialists and clients fill out their applications online. They will help train peer support specialists online. They will help peer support specialists set up and hold client meetings. They will make sure all paperwork—surveys, timesheets, etc.—is completed on time.

The coach could be a staff member from an organization such as a local ARC, LIDDA, behavioral health service center, managed care provider, etc. Our project would support a part of that staff member’s salary. Or this person could be independent. They could be an experienced self-advocacy chapter leader, service provider, even a parent or caregiver for people with IDD.

The person must have experience helping people with IDD plan the lives they want and get the services they need. They must have great technology and mentoring skills. They must very organized so that data is collected on time and with accuracy.

This person will work on the project for 10 months, from July 2021 through April 2022. The job should take about 20 hours per week. Some months will have more hours, some fewer. This is a contract position. Please contact us if you are interested or if your organization wants to get involved.

This is an exciting project with a promising future. A successful pilot may be expanded in the 2022-2023 project year. Get involved today!

P.S.—We will be recruiting for new peer support specialists and clients in the next few months. Stay tuned for that announcement!

Get Paid to Talk!

Our team will be holding listening sessions to learn more about important issues and concerns related to sexual assault of people with IDD. What we learn will help us develop resources and tools to prevent sexual assault and to support people if it does happen to them. We’ll have five groups:

  • People with IDD (who identify as survivors of sexual assault)
  • People with IDD (who do not identify as survivors)
  • Family/friends/allies
  • First responders including law enforcement (who have CIT or Pathways to Justice training), EMS, and emergency room nurses with experience working with people with IDD
  • Service coordinators (e.g., LIDDA, ARC, SSLC, Day Hab, etc.)

Each group will have four people. They will meet two times over Zoom for 1.5 hours each time. Participants will receive $75/session. The first session will be in late June/early July. The second session will be in August.

We want diversity within these groups, including people with differing races and ethnicities, languages, disabilities, gender, gender identification, and sexual orientation.

All participants must be at least 18 years old and willing to discuss these sometimes-difficult topics. We are working with SAFE Austin to ensure all participants have control and choice within the sessions. We will also include a therapist with trauma-informed training in the sessions.

If you or anyone you know is interested in participating, please contact Alisa Miller no later than May 21. Let her know in which one of the five groups you want to join. Alisa will follow up to get more information.

Your help can make a huge difference!