Mental Health Crossroads
Ep. 15 interview with Emma Shouse Garton

Ep. 15 interview with Emma Shouse Garton

August 5, 2020

Speaker Bio: Emma Shouse Garton

Emma Shouse Garton is the Public Information Specialist for the Tennessee Council on Developmental Disabilities and has worked for the Council since 2011. She helps coordinate the Council’s communications efforts (including its social media, website, publications, and community outreach events) to inform Tennesseans with disabilities and families about the issues that impact their lives. Emma also has 24 year old younger twin brothers, Evan and Brendan; Evan has autism and lives in a supported living apartment with the help of a provider agency.

 

Emma leads the Tennessee Adult Brothers and Sisters (TABS) statewide sibling support network for brothers and sisters of individuals with disabilities, launched by the TN Council and Vanderbilt Kennedy Center for Excellence in Developmental Disabilities over a decade ago. She also serves as co-chair of the Chapter Development Committee of the national Sibling Leadership Network (SLN). TABS is TN’s chapter of the SLN. Emma graduated from Belmont University with degrees in social work and sociology and lives in Nashville, TN with her husband T.J., about half an hour from Evan and the rest of her family. She is passionate about helping people with disabilities and their family members – especially siblings – find the support they need to live the lives they want.

 

Contact Information: emma.shouse@tn.gov; 615-253-5368

 

Transcripts: English, Spanish

 

MHDD Center Website

 

Tennessee Council on Developmental Disability Article 

 Psychology Today article

 

 

*Music Credit: Music for our podcast is licensed from Marmoset Music. Artist: Johnny Clay; Song "Looking Down the Road"

 

Ep. 14 Interview with Project ECHO in Alaska

Ep. 14 Interview with Project ECHO in Alaska

July 8, 2020

In this episode we talked with the Project ECHO team based in Alaska, out of the Center for Human Development at the University of Alaska - Anchorage. An ECHO is Extension for Community Healthcare Outcomes, and this ECHO is focused on mental health and intellectual and developmental disabilities. Faith Kelly is the Coordinator for this ECHO project, and we also talked to several clinicians that have been involved in the project and working in clinical roles for many years. 

Transcript

Links:

Project ECHO AK 

What is an ECHO?

Center for Human Developement

BIOS:

Marti Romero, Psy.D., LPC-S

Dr. Romero is a licensed psychologist and the Clinical Director at Assets, Incorporated – a non-profit organization in Anchorage, Alaska that provides treatment and supports to individuals who experience intellectual/developmental disabilities (I/DDs) and/or severe and chronic mental illness. She has dedicated her 30 year career to serving this underserved population. Dr. Romero received her B.S. in Sociology from San Diego State University, and her Masters and Doctorate degrees from Alaska Pacific University. She became interested in working with this population while studying for her undergraduate degree as she worked in an institutional setting for individuals who experienced I/DDs and severe behavioral challenges. She started her career doing direct supports and in so doing has developed a passion, and staunch advocacy for the work she does and the people with whom she works.

In 2014/15 Dr. Romero seized the opportunity while completing her doctoral dissertation, to research the training provided to masters level clinicians (or lack thereof), to provide behavioral health services to individuals with I/DDs. In addition to this research, and from her experiences working with and supervising many clinicians over the years, she knew the training was sparse – especially in Alaska. As part of her dissertation, she developed an in depth training curriculum for clinicians who would be willing, and interested in serving this population. She has since utilized this training to assist clinicians, through a variety of venues, gain the skills needed to effectively provide behavioral health services to individuals who experience I/DDs.

Dr. Romero is a life-long Alaskan, who enjoys spending time with family and friends; fishing, camping, hiking, playing softball – generally most things in the great outdoors.

Laronsia ‘Ronnie’ Reynolds

Ronnie was born in Florida and relocated to Anchorage, Alaska, in 1982. She attended Alaska Pacific University and completed her undergraduate degree and obtained a Master’s Degree in Counseling Psychology.

 

Ronnie has worked the past 25 years in the non-profit sector performing various roles in Anchorage community health agencies. She has extensive experience working with children and adults who experience varying abilities, diagnosis, and challenging behaviors. She has worked successfully with those experiencing symptoms of Anxiety, Depression, ADHD, transitions, Dementia, serious mental illness, severe emotional disturbances, and intellectual and developmental disabilities. Adapting therapeutic treatment strategies and approaches has been key in her work.

 

When not working, Ronnie enjoys spending her time with family and friends. She particularly enjoys being in the outdoors during the Summer and Fall seasons. She also enjoys playing sports and all types of word and board games. She believes there is nothing like doing work you are passionate about…….it makes it fun and not just a job.

 

BreeAnn Davis was born and raised in Alaska. Professionally she has worked for a tribal social service agency for the past 7 years. Personally she is the parent of 4 children, two who experience a co-diagnosis of both a developmental disability and a mental health diagnosis. She has an AAS in Disability Services and a Children’s Behavioral Health endorsement through the University of Alaska. She also has an ACRE certificate and is a certified Career Development Coach. She is currently serving on the advisory board for the National Mental Health and Developmental Disability (MHDD) National Training Center. In her personal time, she loves to garden and volunteer in her community.

 

Summer LeFebvre’s (LCSW BCBA LBA) 20 years of practice has been focused on working with individuals and families that have experienced complex trauma. Summer is the Clinical Director of the Effective Behavior Intervention (EBI) clinic at the University of Alaska Center for Human Development. The EBI program specializes in providing technical assistance and training in the development and use of person centered applied behavioral science interventions. In her role at the EBI program Summer has worked for six years across urban and rural Alaska within school districts and for health care providers who serve people adults, youth and children experiencing combinations of substance use disorders, behavioral health and developmental disabilities.

 

Summer has a Master's in Social Work from the University of Alaska, Anchorage in 2005, a postgraduate certificate in Positive Behavioral Support from Northern Arizona University in 2014 and is Licensed Board Certified Behavior Analyst and a Licensed Clinical Social Worker in Alaska.

Faith Brainerd Kelly joined the team at the Center for Human Development in Anchorage, Alaska, in early 2019. After studying fine art at Mount Holyoke College in Massachusetts, Faith headed North to Alaska where she worked in the field of disability support services for nearly 20 years. Raised in a large and loving family in Maine, she is grounded in the values of human rights and self-determination. For the past several years, Faith has served as a board member for the Key Coalition of Alaska, an organization promoting equality for Alaskans who experience disabilities through direct interaction with the state government. As for that art degree – Faith gets creative these days figuring out how to walk 3 dogs without tripping over their leashes.

 

*Music Credit: Music for our podcast is licensed from Marmoset Music. Artist: Johnny Clay; Song "Looking Down the Road"

EP 13 Checking in with Micah Peace

EP 13 Checking in with Micah Peace

June 24, 2020

In this episode, the last of our month of check-ins with our previous guests, we heard from Micah Peace. Micah is part of the Intellectual and Developmental Disabilities Mental Health (IDD-MH) Research Partnership. We have linked that interview below. Micah talks a lot about the importance of slowing down, listening, boundaries, and how this global situation is shedding light on long-standing issues. We enjoyed hearing from them and hope that our listeners can take a moment to consider what you're doing in your own life to take care of yourselves.

BIO: Micah Peace is an Autistic, multiply disabled educator and community organizer from Louisville, KY. Grounded in an Intersectional, interdisciplinary approach as well as their own personal experiences of Disability, Micah strives to foster collaboration between Disability service providers and the Disability Community to promote true access, inclusion, and empowerment through creativity, acceptance, and collaboration. They are a founding member of the Kentuckiana Autistic Spectrum Alliance (KASA), an affiliate group of the Autistic Self-Advocacy Network serving the Louisville Metro Area, including Southern Indiana. 

Link to transcript

Link to group interview

 

*Music Credit: Music for our podcast is licensed from Marmoset Music. Artist: Johnny Clay; Song "Looking Down the Road"

Ep 12 Checking in with Destiny Watkins

Ep 12 Checking in with Destiny Watkins

June 19, 2020

This week we followed up with Destiny Watkins, a disability rights advocate and member of the IDD-MH Research Partnership. We wanted to check in with Destiny to see how she is doing and discuss some of the ways that the COVID-19 pandemic is impacting her and others with disabilities. We hope that you enjoy listening to our conversation with Destiny.

Link to Transcript

Link to group interview

 

Destiny's Bio:

I have many lived experience of Physical/Development/Mental Health challenges. I am a DoTerra Wellness Advocate. I played a central role as an advisory board member of the Intellectual/Developmental Disability and Mental Health (IDD- MH) Research Partnership (PCORI Tier A P2P award: #7675658-A), I helped design the techniques we used to better understand the needs and experiences of young adults with IDD and co-occurring mental health conditions. I have done several national presentations and webinars to share what we learned. I was also an advocate for our group at a national expert panel held by the Substance Abuse and Mental Health Services Administration (SAMHSA). I was also part of the Patient-Centered Outcomes Research Institute (PCORI) national conference and annual reauthorization. I have made multiple presentations about mental health advocacy and natural approaches including for the Association of University Centers on Disabilities (AUCD) and the START National Training Institute and I was also on a few other advisory boards for peer mentoring intervention also with Boston University. I am a primary member as a co-investigator for “Reconciling the Past & Changing the Future: Engaging young adults with IDD-MH and researchers in CER/comparative effectiveness research”.I also am involved in other projects around the country since my past project are connected and involved in project like The Arc Of United States and Self Advocates Becoming Empowered (SABE) I also am a self-advocate in my local city hall engineering and planning/development with helping improving ADA accessibility and also when I travel for conferences and expert panels presentations.I also bring awareness of wheelchair accessibility and how to be more aware of people with many disabilities not just visual disabilities.

 

*Music Credit: Music for our podcast is licensed from Marmoset Music. Artist: Johnny Clay; Song "Looking Down the Road"

Ep 11 Checking in with Justin Olson

Ep 11 Checking in with Justin Olson

June 10, 2020

In this episode we followed up with Jeff Sheen's longtime friend, Justin Olson. He is a disabiliy rights advocate from Salt Lake City, Utah. We wanted to check in with him and see how he is managing his work and how he is doing with the disruptions from the COVID-19 pandemic. Justin mentioned several things he is doing right now and some virtual events which are linked below.

Please click here for a transcript of the episode. Make sure to visit our website www.mhddcenter.org and follow us on social media @MHDDcenter.

Best Buddies Virtual Walk https://www.bestbuddiesfriendshipwalk.org/ on June 20th, 2020.

Ep. 10 - Boston University Mentoring and Research Team

Ep. 10 - Boston University Mentoring and Research Team

June 5, 2020

We had the opportunity to talk to the Boston University Mentoring and Research Team, a project we discussed with Ariel Schwartz in a previous episode (linked here). Marianne, Jesse, Timur, and Alix (bios below) talk to us about their experience being researchers and peer mentors for this project, how it has impacted them, and how they have used this project to assist peers. We enjoyed hearing from all the members of this group* and have included a full transcript (linked here) if you have any trouble with the audio. 

 

*We recorded this group interview prior to the onset of the COVID-19 pandemic. 

MHDD website

 

BIOS:

Marianne

 “I am 22 years old I worked as a researcher at Boston University. My job was to mentor a young adult and then put together data about mentoring when it was over. I really enjoy having coffee!”

 

Jesse

“I enjoyed coming to work. I helped Ariel with the Meeting Wrap Up each week. Outside of BU, I do not get upset very much. I am open to doing more tasks than most other people are.”

 

Timur  Gizatullin

“I am a researcher at Boston University and have been working there since September 2018.  It’s been a wonderful experience so far.  I live in Newton, MA, and have lived there for most of my life.”

 

Alix Herer

“I worked at Boston University on a research project, by making a peer program for young adults with intellectual/developmental disabilities and mental health challenges. On my researching team everyone had real life experiences in the project because they went through some of these challenges growing up.  During my time at Boston University I got to, make worksheets for my mentees, I got get to know my mentee by meeting one a week for 10 weeks and a weekly check in, I taught them about mental health, and I also collected a lot of data and got to put that into the research project to make the program better.  I really enjoyed being a part of this project because I was able to help someone who was similar to me. Some things I really  enjoy are photography, going to the beach and collecting sea glass, and I also love cooking.”

 

 

Participatory action research (PAR)

Website for PAR team:

https://aaspire.org/

 Inclusive research information from Australia: https://www.cadr.org.au/images/1759/inclmainrapidreview.pdf

 

*Music Credit: Music for our podcast is licensed from Marmoset Music. Artist: Johnny Clay; Song "Looking Down the Road"

Ep. 09 Interview with Janet Shouse

Ep. 09 Interview with Janet Shouse

May 6, 2020

Ep. 09 Interview with Janet Shouse show notes 

 

In this episode, we had the opportunity to interview Janet Shouse, a program coordinator at the Vanderbilt Kennedy Center and parent advocate. You may remember Janet from a group interview we did (linked below), but she is involved in so many projects, we interviewed her again about some of the things she is working on. 

 

In this episode, we discuss a toolkit that she helped develop that is for healthcare professionals to better meet the needs of people with intellectual and developmental disabilities. She discusses some of the other resources that she has helped develop and is full of information and experience.  

 

We thank you for listening to the MHDD Crossroads podcast. Remember to subscribe, listen, and share our podcast and for more great information and resources, follow us on social media @MHDDcenter 

 

Bio:  

Janet Shouse works at the Vanderbilt Kennedy Center in Nashville, TN, as the program coordinator for the IDD Toolkit, www.iddtoolkit.org, an online resource for medical providers to better serve adults with intellectual and developmental disabilities. Janet also serves with TennesseeWorks, a partnership of state agencies and disability organizations aiming to improve the employment landscape for people with disabilities. As part of that work, she writes and edits a blog called “Rise to Work,” www.tennesseeworks.org/blog/. Janet is also involved with the new multi-site Center for Dignity in Healthcare for People with Disabilities, and she is the study coordinator for a Department of Defense Autism Research Grant to create a provider-focused training program to serve adults with autism spectrum disorder. This effort will use the Project ECHO model (live videoconferencing and case-based presentations) to enhance primary care providers’ ability to care for autistic adults. Janet has also been a member of the advisory board of a national research project examining the needs of young adults with IDD and mental health conditions. She is the parent of three young adults, including a son with autism. 

Janet is connected to hundreds of families of children and adults with disabilities through her work with Autism Tennessee, TennesseeWorks, The Arc Tennessee and the IDD Toolkit. 

 

 

Link to transcript: https://www.mhddcenter.org/wp-content/uploads/2020/05/Interview-with-Janet-Shouse.pdf

 

 

Links to resources mentioned in this episode: 

 

IDD toolkit: www.iddtoolkit.org 

 

Here’s the TennesseeWorks website and a few key blog posts: 

  

www.tennesseeworks.org/blog  

 

https://www.tennesseeworks.org/each-of-us-must-help-protect-our-community-at-this-time/ 

 

https://www.tennesseeworks.org/the-dignity-of-risk/ 

 

Some of the source curriculums: http://psip.vueinnovations.com/ 

 

A press-release  https://hdi.uky.edu/project/center-for-dignity-in-healthcare-for-people-with-disabilities

 

Ep. 08 - The IDD-MH Research Group

Ep. 08 - The IDD-MH Research Group

April 2, 2020

In this episode we talked to the Intellectual and Developmental Disabilities Research Partnership (IDD-MH). This group is made up of researchers, including people with lived experience of IDD and/or mental health concerns.  Members of this group involved in this interview include Destiny Watkins, Micah Peace, Janet Shouse, Jessica Kramer, and Ravita Maharaj; brief bios of each person are included below. The purpose of this group is to learn about and make recommendations to improve access to mental health services for young adults with IDD-MH and we learn about how they became involved in this project and the impact it has had.

Links

Full transcript: http://https://www.mhddcenter.org/wp-content/uploads/2020/05/IDD-MH-Research-Group-Interview-Transcript.docxstaging2.mhddcenter.org/wp-content/uploads/2020/03/Group-Interview-Transcript.docx

Article by the IDD-MH Research Partnership: 

https://www.tandfonline.com/doi/abs/10.1080/19315864.2019.1636910?journalCode=umid20

MHDD National Training Center: www.mhddcenter.org

 

Thank you for listening to the Mental Health Crossroads Podcast - where we explore the intersection of mental health and developmental disabilities. This podcast is produced by Dr. Alex Schiwal and is hosted by Dr. Jeff Sheen. This podcast is a product of the Mental Health and Developmental Disabilities National Training Center, which is a grant from the Administration for Community Living. Remember to like, subscribe, listen, and share wherever you get your podcasts. Follow us on social media @mhddcenter.

*Music Credit: Music for our podcast is licensed from Marmoset Music. Artist: Johnny Clay; Song "Looking Down the Road"

 

Guest Bios:

Destiny:

I have many lived experience of Physical/Development/Mental Health challenges. I am a DoTerra Wellness Advocate. I played a central role as an advisory board member of the Intellectual/Developmental Disability and Mental Health (IDD- MH) Research Partnership (PCORI Tier A P2P award: #7675658-A), I helped design the techniques we used to better understand the needs and experiences of young adults with IDD and co-occurring mental health conditions. I have done several national presentations and webinars to share what we learned. I was also an advocate for our group at a national expert panel held by the Substance Abuse and Mental Health Services Administration (SAMHSA). I was also part of the Patient-Centered Outcomes Research Institute (PCORI) national conference and annual reauthorization. I have made multiple presentations about mental health advocacy and natural approaches including for the Association of University Centers on Disabilities (AUCD) and the START National Training Institute and I was also on a few other advisory boards for peer mentoring intervention also with Boston University. I am a primary member as a co-investigator for “Reconciling the Past & Changing the Future: Engaging young adults with IDD-MH and researchers in CER/comparative effectiveness research”.I also am involved in other projects around the country since my past project are connected and involved in project like The Arc Of United States and Self Advocates Becoming Empowered (SABE) I also am a self-advocate in my local city hall engineering and planning/development with helping improving ADA accessibility and also when I travel for conferences and expert panels presentations.I also bring awareness of wheelchair accessibility and how to be more aware of people with many disabilities not just visual disabilities.

 

Micah: 

 

Micah Peace is an Autistic, multiply-disabled educator and community organizer from Louisville, KY. Grounded in an Intersectional, interdisciplinary approach as well as their own personal experiences of Disability, Micah strives to foster collaboration between Disability service providers and the Disability Community to promote true access, inclusion, and empowerment through creativity, acceptance, and collaboration. They are a founding member of the Kentuckiana Autistic Spectrum Alliance (KASA), an affiliate group of the Autistic Self-Advocacy Network serving the Louisville Metro Area, including Southern Indiana.

 

Janet:

Janet Shouse works at the Vanderbilt Kennedy Center in Nashville, TN, as the program coordinator for the IDD Toolkit, www.iddtoolkit.org, an online resource for medical providers to better serve adults with intellectual and developmental disabilities. The IDD Toolkit Project also offers online training to help build capacity of clinicians to serve adults with IDD. Janet also serves with TennesseeWorks, a partnership of state agencies and disability organizations aiming to improve the employment landscape for people with disabilities. As part of that work, she writes and edits a blog called “Rise to Work,” www.tennesseeworks.org/blog/. Janet has also been a member of the advisory board of a national research project examining the needs of young adults with IDD and mental health conditions, the IDD-MH Research Partnership. She is the parent of three young adults, including a son with autism

 

Links and resources: Here is the link to the journal article that we published that includes the findings of our survey and storytelling session, as well as our recommendations for research, policy and practice!

https://www.tandfonline.com/doi/abs/10.1080/19315864.2019.1636910?journalCode=umid20

 

Ravita:

Dr. Maharaj is a licensed, clinical social worker in the District of Columbia, with extensive experience in program development and implementation for adults with developmental disabilities, mental illness, and substance abuse. Her previous employment includes 12 years at the Lt. Joseph P. Kennedy Institute, Washington, DC, in the position Director/Division Director, and three years as a Research/Evaluation Coordinator at Community Connections, Inc., the largest mental health agency in Washington, DC.

Dr. Maharaj earned a doctorate in social work at the Catholic University of America, with a research interest in organizational factors that influence the implementation of evidence-based practices. She also holds an MSW from Howard University and a bachelor's from the University of Manitoba, Canada. Originally from Trinidad, she has worked for over 20 years in human services in Washington, DC.

Jessica:

Dr. Jessica Kramer, PhD, OTR/L is an Associate Professor in the Department of Occupational Therapy, College of Public Health and Health Professions, University of Florida.

 

Dr. Kramer’s research draws upon theoretical concepts and methodologies from occupational therapy, disability studies, education and rehabilitation to: 1) Partner with youth with intellectual and developmental disabilities (I/DD) in the development and evaluation of rehabilitation products; 2) Develop community-based interventions that equip youth with I/DD and their families with the skills to identify and resolve environmental barriers to participation; and 3) Design high quality patient reported outcome measures (PROMs) using contemporary measurement approaches.

 

Dr. Kramer uses quantitative, qualitative, and participatory approaches to design projects that harness the optimal method needed to answer complex research questions and meet the needs of multiple stakeholders, including youth and young adults with disabilities, their families, and rehabilitation professionals.​

 

 

Ep. 07 - An interview with Justin Olson

Ep. 07 - An interview with Justin Olson

March 4, 2020

 

Justin Olson is our guest this episode. He is a disability rights advocate from the Salt Lake City area of Utah. Justin was a founding member of the Becoming Leaders for Tomorrow a grant funded group of young adults created to educate pediatricians about how to better support individuals with developmental disabilities transition to adult medical providers. He is also a long-time staff member of the University of Utah’s (U of U) Best Buddies program and is involved with Best Buddies at the local, state, and national levels. Justin is also a proud fan of the U of U and Utah Jazz basketball teams. He attends games regularly and is one the most enthusiastic fans in the arena.

 

Jeff and Justin discuss his current involvement in the Best Buddies program, past projects he has worked on, and what he does to maintain his mental health. He talks about some of his experiences with hospitalization (and a full video of the panel discussion is linked below).

 

*The MHDD National Training Center would like to note that our conversation with Justin about staying positive and happy is not meant to suggest that depression and anxiety are not serious clinical health conditions that many people experience; we support appropriate therapy, medication, and activities for wellness as part of a comprehensive plan for managing mental health concerns, in addition to the ideas that Jeff and Justin discuss that are specific to Justin’s lived experience.

 

 

Links:

MHDD National Training Center and past episodes https://mhddcenter.org/voices/

Link to transcript

Panel Discussion: https://www.youtube.com/watch?v=RJVgU7aGUZw

Psychology today service locator

SAD lamps (and other recommendations for seasonal affective disorder)

Apps Justin recommended for keeping in touch with friends:

Marco Polo

Google Duo

 

*Music Credit: Music for our podcast is licensed from Marmoset Music. Artist: Johnny Clay; Song "Looking Down the Road"

Conversation with Dr. Ariel Schwartz

Conversation with Dr. Ariel Schwartz

February 5, 2020

In this episode, we talk to Dr. Ariel Schwartz at Boston University. She tells us about her early engagement with the disability community. She discusses the importance of meaningful inclusion of people with disabilities in research, beyond the tokenism frequently present in academic research. Ariel discusses participatory action research and how she has implemented it in work with peer-mentoring, developing relationships with self-advocates and giving them space to actively steer research. We will be interviewing some of the self-advocates that work with Ariel in the coming months, so we can hear directly from them and their experiences in this process.

 

 

Guest bio:

 Ariel Schwartz, PhD, OTR/L is a postdoctoral fellow at the Center for Psychiatric Rehabilitation at Boston University. She has worked with young adults with IDD for over 15 years. Ariel’s research is focused on figuring out how to best include people with IDD in the research process. Including young adults is called “inclusive research.” Ariel wants to learn the best way to do inclusive research, because she believes that people with IDD have a lot of knowledge and experience that can help make research more useful to people with disabilities. Ariel also studies peer mentoring and employment for young adults with IDD-MH.

 

 

Links:

 Transcript of this episode

 

Our website: www.mhddcenter.org

 

Participatory action research (PAR)

Website for PAR team:

https://aaspire.org/

 Inclusive research information from Australia: https://www.cadr.org.au/images/1759/inclmainrapidreview.pdf

 

*Music Credit: Music for our podcast is licensed from Marmoset Music. Artist: Johnny Clay; Song "Looking Down the Road"