EPISODE 26 -Recovery with a mental illness and NAMI Tennessee – March 15, 2023
Often the journey of mental health is either delayed or ignored. Listen as Bart, the host of the Vista Points podcast named Choose Your Path, interviews Alondra with NAMI Tennessee and Darlene with Vista Points as they address this often-overlooked part of a healthy life and future. Resources, stories and examples of special needs trusts paying to support mental health are discussed.
EPISODE 26 SCRIPT:
Greetings from our Middle Tennessee studio…and welcome to today’s Vista Point podcast, “Choose Your Path”, where the Vista Points’ staff are committed to improving the quality of life for people of any age, who are living with a physical, mental or intellectual disability.
I’m Bart, your podcast host. My role is to walk with you on this journey of discovering and using special needs trusts. In previous episodes, we introduced special needs trusts, what they are, stories of how people have used their special needs trusts, and how the special needs trusts impacted their lives.
Last month, we brought attention to self-care through our podcast episodes. This month, we are continuing our focus on health – but this month is specifically focused on mental health. Hopefully each of us recognizes the need to pay attention to our own mental health – but we should also support others in their mental health journey – no matter who it is, what age, or what phase in life they are in. So today, we are fortunate to interview Alondra Soto who will share her uplifting story about her own mental health and how her own journey has unfolded.
Bart: Hi, Alondra. Thanks for joining us today.
Alondra: Hi Bart, thanks for having me.
Bart: Am I pronouncing your last name correctly, by the way?
Alondra: Yes. Soto.
Bart: Okay. Thank you. I understand you are the Peer Programs Coordinator for NAMI Tennessee. For our listeners, NAMI is the acronym for National Alliance on Mental Illness. You may hear us refer to this organization as NAMI throughout this podcast. I understand NAMI is an incredible resource. First though, would you tell us a little about yourself and your role with the organization?
Alondra: Of course. And Bart, it’s pronounced “NAMI.” So, I serve as NAMI Tennessee’s Peer Programs Coordinator. I manage two of our peer lead programs, NAMI Ending the Silence and NAMI In Our Own Voice. I’ve been in the mental health field since 2018, but I consider myself a mental health advocate for really as long as I can remember.
Bart: That’s interesting, Alondra. And, it’s NAMI. Would you tell us more about your story?
Alondra: Of course. So, I’ve been in recovery since 2019 but my really my mental health journey began when I was just 9 years old. I was in the 4th grade and my parents divorced and that was a really big catalyst that set a lot of traumatic events in my life into motion. I still remember it as if it just happened yesterday. My mom pulled me out of school, she brought me home, she told me to pack a few things, and then later that evening she checked us into a hotel that was next to her job. Later that same night she introduced me to a man who would become my new stepdad. A few months after that, we actually moved us into a new townhome with him. Fast forward probably about five or six months, one evening I found out that my new stepdad sold drugs and that my mom had also began selling drugs with him. By this point, I was around ten years old, and I knew that what they were doing was really wrong. But, I felt like I had this big secret I couldn’t let anyone else find out because I didn’t want to end up in the system. This unfortunately this was the first of many bad parenting choices my parents were gonna make throughout my childhood. I was a victim of something called generational trauma. So, generational trauma can be thought of as traumatic events that have sort of a ripple effect across generations. You know, when I was a kid, I never wanted to die. But, I always felt like my parents’ lives would be so much better if I wasn’t in it. I was extremely lonely, and depressed, and I didn’t really have anyone in my life that I could turn to for help. I essentially raised myself with the help of my older brother and sister and sadly for me, things with my mental health only got worse. I turned to negative coping skills like self-harm, because a part of me was really hoping that a teacher or a guidance counselor would see my scars and get me the help I really needed. But, sadly for me, that never happened. So, fast forward again to 2019. And, my dad put me in a really bad situation – super unsafe for me. And, someone I love dearly to this day, gave me great advice. They told me, “Alondra, just because they are your parents doesn’t mean you have to keep letting them hurt you.” So, for the first time in my life, I put myself first. I realized I had two paths: I could go back to self-harming to cope or I could see what getting help looks like. So, I am so glad I chose myself that day, Bart. And, honestly, 2019 is a very special year to me because it’s the year I started treatment. I was diagnosed with MDD, also known as major depressive disorder, and with the help of my therapist I started to build a support system for myself – as unconventional as it may look. I realized just how bad it really was for me growing up and how the things that happened to me in my childhood still are affecting me ‘til this day. But, most importantly, I realized that I didn’t have to continue living that way. So, I was the first person in my family to do a lot of things. I am a first generation American, I was the first to graduate high school, four years later after that, I became the first in my family to graduate college. But, you know, despite all of my accomplishments, I think the one I am most proud of is being the first person in my family to end generational trauma.
Bart: Wow. I have to say, I’m impressed with your perseverance and achievements along each step of your journey. I want to know more. Would you explain to us the reason I hear you reference you’re “in recovery with mental illness” rather than you’re cured or you’re finished with it?
Alondra: So, the first time I heard the term “in recovery with a mental illness” was actually my first few days on the job at NAMI. When you have mental illness, I think something you learn along the way is that it’s likely gonna be with you forever and that recovery is more of a journey not a destination.
Bart: Well, that makes sense. I’m glad you clarified that for us. Would you share more about your role in NAMI?
Alondra: Yeah. So for me, NAMI Tennessee has been life changing. You know, before I found NAMI, I thought I just had a bad luck draw on parents. I never thought my story was anything special. NAMI has taught me that my journey has the power to help others by showing them that recovery is possible. I actually just received my CPRS certification, so now I use my lived experience to teach other peers how to share their story in order to provide hope and healing to others.
Bart: That’s interesting, and so informative, Alondra. Every single person has his or her own story. Everyone’s different. We all understand that. So without any endorsements, what kinds of suggestions, tools or resources could you offer someone who is aware of needing help for his or her own mental health? Or on a similar note, what could you offer someone whose loved one should address their own mental health?
Alondra: As a peer I think the best piece of advice I can offer someone who is struggling is that you are not alone. There is hope and there is help out there, and I know the first step to getting treatment can be really scary but there are organizations, like NAMI, that can be there for you every step of the way. If you are a loved one of someone who is struggling, I think that self-care should be top priority for you. It’s very hard to take care of others without taking care of yourself first.
Bart: What insights you have! I hear you reference NAMI Tennessee throughout your story and suggest it to others. Would you tell us more about the tools or services NAMI Tennessee provides?
Alondra: Certainly! So, I know that Vista Points serves those with disabilities. And, while we don’t have programs geared towards that specific population, we do serve everyone in the state of Tennessee. So, we offer many programs.
The first I’m gonna tell you about is called NAMI Family-to-Family. Family-to-Family is a workshop for family members, caregivers and loved ones of those with a mental illness. It goes into mental illnesses, medications, coping skills, communication skills and self-care strategies.
Up next is NAMI BASICS which is a workshop for parents and caregivers. It covers mental illnesses, medications and in-depth documentation help.
NAMI Bridges is another one of our support groups for individuals living with a mental health condition. This one also goes over mental illnesses, but it touches on what recovery can look like, coping skills, crisis planning and so much more.
For our youth and young people, we have Ending the Silence which teaches kids about mental health symptoms and warning signs. It teaches them how to be a good friend, and most importantly what early intervention can look like.
NAMI In Our Own Voice is a dynamic storytelling presentation with a goal of changing the attitudes, assumptions and stereotypes of those living with a mental illness by sharing our recovery story.
Lastly, we have our resource helpline that anyone living in Tennessee can call for resources specific to their community relating to mental health.
Bart: This is great! Are these available to anyone throughout the state? Even in the rural areas?
Alondra: Absolutely! So, NAMI operates on three tiers. We are national, meaning that we are in all 50 states. And then you come down to the state level where I work. Then comes our affiliates which are volunteer lead and are more at the county level. We have about 20 affiliates throughout Tennessee covering all of the regions!
Bart: Thank you, Alondra. This is valuable information. You’re providing us such an insight into mental illness and resources. Would you tell us the best way for people to contact you or find out more about NAMI services Tennessee?
Alondra: You can visit us at namitn.org. You give our office a call at 615-361-6608. Our resource helpline number is 800-467-3589 which can also be found on our website.
Bart: Thank you again, Alondra. Now we’re gonna move into our new segment, Ask the Expert. Ms. Darlene Kemp, is a Tennessee expert on special needs trusts. She’s here to answer questions asked by our podcast listeners.
Bart: Hello, Darlene. It’s good to see you today.
Darlene: Hi, Bart. I really enjoyed Alondra’s story, and she is such an inspiration to so many.
Bart: We’ve been talking with Alondra about learning in recovery of mental illness. Our first question was stated in person by a public gathering rather than sent into us electronically. And, what do you say to people or even special needs trust beneficiaries who say, “That’s not me. I have a physical disability I need to focus on. I’m fine. The idea of mental illness is too much for me to add to my plate.”
Darlene: That’s a really good statement, and one that we hear at Vista Points quite regularly. Our company focuses on the entire individual. So, along with physical disabilities, mental health issues come into play right beside them. We want our beneficiaries to live a good quality of life. By addressing both physical and mental issues at the same time, the beneficiary can live that good quality of life.
Bart: That makes sense, Darlene. We all need to consider mental health and mental illness – no matter what else we’re dealing with in life.
Darlene: Well, when a new trust is established with Vista Points, we work with the beneficiary and his or her family advocate to see what the beneficiary needs and how the special needs trust can best be used to satisfy this need. Sometimes the beneficiary needs or wants additional counseling. Other times the beneficiary may need to reside in a mental health facility or a rehab facility for a short time, to help deal with any mental health issues the beneficiary is facing.
And let me give you an example. A young woman was left alone in her home after her mother died. The woman had mental illness and a physical disability. Because of the lack of care the woman had received while living with her mother, it was necessary to have the woman hospitalized. There she was able to get regulated on medication and to take care of some other physical issues. Her counselor at the hospital recommended the woman have a brief stay at a mental health facility to help her deal with the loss of her mother and with her mental health issues. This woman was very much for this recommendation. She stayed in the mental health facility for a couple months and really thrived. She received individual and group therapy and learned how to deal with her issues in a productive manner. She also made some new friends while she was there. And, you know, many people are scared to enter a facility thinking they will never leave. This woman actually thrived in the facility. And, upon returning to her personal residence, she was equipped with so many skills to help her on a day to day basis. She ended up moving to a family group home so she would have someone with her and not live alone. To this day, she is happy and doing well. She even took a trip with the family and had a great time. I want everyone to know the first and foremost is that Vista Points is here to help and facilitate change that will help the beneficiary.
Bart: You know, since Alondra told us that since NAMI Tennessee serves the entire state, what role does can a special needs trust play in supporting a beneficiary’s recovery with mental illness?
Darlene: Well, a special needs trust can be used to pay for many items and services to assist the beneficiary. As I previously stated, the trust can pay for rehab and therapy. It can also pay for medications that the beneficiary’s government benefits or insurance do not cover. It can pay for items that can help the beneficiary cope with certain types of mental illness.
For example, one of our beneficiary’s wanted a weighted blanket. She said that the storms scared her so badly that she hid in the closest. She thought a weighted blanket would help to calm her. And, it did.
Bart: Darlene, does it make any difference what services might be in a different county?
Darlene: Well through Vista Points, each beneficiary can receive services anywhere in the state. We have beneficiaries who live in one county but receive care and treatment in another. The location of the service doesn’t matter. The trust will pay for services that the beneficiary’s government benefits do not cover.
Bart: Thank you, Darlene.
And, thank you to the podcast listeners for tuning in to today’s episode Choose Your Path, a Vista Points podcast. Don’t forget to ask your questions! If you haven’t yet, I encourage you to do so.
You can ask your questions over the phone by calling Vista Points office at 888-422-4076. That number again is 888-422-4076. Each of the Vista Points team is happy to answer your questions and assist you in whatever way they can.
Or, you can also ask your questions through the Facebook page, VistaPointsInc, that’s Vista-Points-I-N-C, where you can send a direct message, otherwise known as a D-M.
I’m happy to say our podcasts have become smart resources for many people. You can subscribe to the Vista Points YouTube channel and be notified of the latest episodes to go live, which is on the 1st and 15th of every month. The YouTube channel is named Vista Points SNT, that’s S-N-T as special needs trust.
You can also find past episodes and their transcriptions on the Vista Points website at vistapoints.org. That’s vistapoints-dot-O-R-G.
Enjoy your day with your loved one. Come back for more or look into past episodes of Choose Your Path. Regardless of where or when you find us, we walk beside you on your path. I look forward to sharing more information with you on how special needs trusts can be of benefit for anyone living with a disability – physical, mental or intellectual.