Erica Olenski Spills the Tea on the Texas Medicaid "Unwinding"

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[00:01:17] Welcome to the High Tea with Grace podcast where we spill the tea on HIT.

[00:01:22] Today I'm honored to welcome friend and inspiration, Erika Olenski.

[00:01:27] She's a bomb.com communications professional and the founding executive director of August Artists.

[00:01:33] Hi, Erika.

[00:01:35] Grace, thank you for having me.

[00:01:37] What an amazing excuse to hang out, right?

[00:01:40] I love spending time with you.

[00:01:43] Exactly. I'll take any excuse we can though.

[00:01:46] Absolutely.

[00:01:46] So let's start by having you tell us a bit about your patient and caregiver journey

[00:01:51] with your sweet boy, August.

[00:01:53] Absolutely. So actually coming up this month of all times, August is celebrating the five-year anniversary

[00:02:01] of his initial diagnosis.

[00:02:04] We found a growth form of brain cancer in his sweet five-month-old body in May of 2019,

[00:02:13] which interestingly enough is also brain tumor awareness month.

[00:02:17] So it's a bit serendipitous to reflect on that correlation as well.

[00:02:22] But our journey started in its intensity about five years ago,

[00:02:27] and we've been living a complex care life since then.

[00:02:31] August is a two, now going on three times survivor of brain cancer

[00:02:36] and also as a stroke survivor that he endured as a complication from one

[00:02:41] of the brain tumor resections we had before his first birthday.

[00:02:45] And we've navigated the life of complex care in many different flavors in that time

[00:02:52] beyond cancer survivorship and stroke survivorship,

[00:02:56] which both varied their own unique challenges.

[00:02:59] He also was trach dependent for about three and a half years.

[00:03:03] That nuance meant that he was reliant on private duty nursing as well

[00:03:11] to kind of manage his day-to-day care in the home

[00:03:15] and then also outside of the home, going to school and engaging in the community.

[00:03:19] The clinical support required for him to just do typical things was a lot more

[00:03:24] because of the trach and he also has a G2,

[00:03:27] which means that there's some nuances to how he takes in nutrition and stays hydrated

[00:03:33] and then is also deaf in one ear with some hearing loss in the other.

[00:03:38] So that ability to absorb the environment the way you or I might is a little bit different for him.

[00:03:45] And he has the privilege and honor of getting to go to a school for hearing impaired kids

[00:03:50] through the regional day school program in the public school district here in North Texas,

[00:03:55] which has been a wonderful support network for him and his language development

[00:04:00] and has been thriving despite all of that complexity in the last five years.

[00:04:06] He's been thriving in a large part I think to his strength, of course,

[00:04:11] but the community that we've been able to engage to help support him and allow him to be successful

[00:04:16] to the extent that he's able to be.

[00:04:18] And he's doing so well that we're talking about having him start kindergarten in the fall

[00:04:23] in a mainstream classroom with minor accommodations,

[00:04:26] which is one of the biggest wins as a parent.

[00:04:29] You know, you could ask for having navigated what we have,

[00:04:33] allowing him to experience such a pivotal milestone in childhood,

[00:04:38] like going to kindergarten and school for the first time in a traditional environment

[00:04:43] that still allows him to be set up for success.

[00:04:46] That is so beautiful. That is so awesome.

[00:04:48] And we're all cheering August on, honestly.

[00:04:51] And thank you for being willing to share his story and your story.

[00:04:55] I know it's a challenge, but you guys have navigated it so beautifully.

[00:04:59] And I know just being a friend of yours, I am always just so inspired by it

[00:05:05] and love to see his smiles and his growth.

[00:05:07] And every time you share something where he's getting to that next level,

[00:05:12] it's something that we can all like cheer on together.

[00:05:15] I wanted to talk today a little bit to you about millions of Texans losing their Medicaid coverage.

[00:05:22] You know, I know you shared your experience in a recent article

[00:05:26] talking about the Medicaid unwinding process.

[00:05:29] You know, we're going to dive deep here.

[00:05:32] And I want to hear about these challenges you faced in maintaining coverage for August

[00:05:38] in the middle of all of this challenging situation and challenging health experience that you are all in.

[00:05:45] Absolutely. I can summarize a little bit of that experience.

[00:05:48] So in the fall, September of last year, we learned that August had recurrent brain cancer.

[00:05:58] We discovered a tumor in the sphynx that we had discovered, the initial tumor in 2019.

[00:06:04] And the conversation at that point, especially with this diagnosis, which is an anaplastic

[00:06:09] ependymeloma, it's a high grade glioma to put it lightly.

[00:06:14] But it's a specific kind of brain central nervous system tumor, actually,

[00:06:18] not a brain tumor so much as it is a central nervous system tumor that grew off of the brain stem itself

[00:06:25] in the cerebral spinal fluid.

[00:06:27] And it's a really unique circumstance when you're treating an anaplastic ependymeloma.

[00:06:34] There are some nuances with it, too.

[00:06:36] It's not typically responsive to chemotherapy.

[00:06:40] So those types of things aren't usually on the table.

[00:06:43] There's some developments in precision medicine that are changing that dialogue.

[00:06:47] But we do not have that type of insight and the genetic composition of his tumor.

[00:06:52] So that wasn't an option for us.

[00:06:55] So the best practice and standard of care for an anaplastic ependymeloma is radiation.

[00:07:00] Really preceded with surgery, if that's possible.

[00:07:03] In August's case, in September, the tumor had recurred and meshed with the brain stem

[00:07:09] and made it clinically decided is it inoperable because of the risk that that would

[00:07:15] cause to him, especially having already endured a stroke to that area.

[00:07:19] So this was all happening in September of last year, 2023.

[00:07:25] And around the same time, the state start well, really last summer into the fall,

[00:07:31] the state of Texas was was going through its re-eligibility process

[00:07:37] in 2020 with the COVID pandemic.

[00:07:43] And I'm going to abbreviate a lot of this and show there's lots of people out

[00:07:46] there that are more technical in the weeds, but from our understanding of the situation

[00:07:51] in 2020, the state established a state of emergency, which meant anybody that was

[00:07:57] already on Medicaid or was getting enrolled in Medicaid was going to be untouched

[00:08:02] until the state of emergency was lifted.

[00:08:04] So what that resulted in is patients like August and other kids across the state

[00:08:08] that either were getting enrolled in Medicaid at the time or had already been on

[00:08:13] Medicaid or going to be automatically

[00:08:17] re-qualified at their renewal timeline.

[00:08:21] And until the state of emergency was lifted, none of that would be re-assessed

[00:08:25] for people that have children that maybe don't live below the poverty line

[00:08:29] or don't make more than a certain threshold designated by the state.

[00:08:34] And the state feels it's in their interest to ensure that these children

[00:08:39] have access to adequate health care.

[00:08:41] And so that's what Medicaid really is there to help support.

[00:08:45] In cases where financial eligibility is maybe not the driving factor,

[00:08:50] because you can't qualify for Medicaid without being financially eligible.

[00:08:54] And one example of that is through the Medically Dependent

[00:08:58] Children's Program or MBCP.

[00:09:01] That's a program that is set up specifically for children that meet

[00:09:06] a medically dependent clinical definition.

[00:09:10] There's, gosh, maybe 10 to 14 specific diagnoses like heart failure,

[00:09:18] trach-dependent, G2-dependent.

[00:09:20] We need to meet a number of those diagnoses to qualify

[00:09:26] for the waiver program to get in this program.

[00:09:28] You can get on a wait list as well and also qualify that way.

[00:09:31] But nonetheless, MBCP allows you to have access

[00:09:34] to Medicaid by way of your clinical diagnosis.

[00:09:37] And so it becomes a different kind of conversation to make sure

[00:09:40] that those patients have access to adequate health care.

[00:09:44] August, my son, qualifies and qualified for that program

[00:09:49] at the time he was trach-dependent and G2-dependent,

[00:09:52] qualified for the program clinically and was able to achieve

[00:09:56] Medicaid coverage by way of that.

[00:09:59] There's a lot of nuances to that program in MBCP,

[00:10:02] but that's how we initially got established on there in 2020.

[00:10:08] As the pandemic continued and the state of emergency

[00:10:11] was continued up until this fall and last year,

[00:10:16] really when they started reassessing the eligibility

[00:10:20] of all these patients, there was, you know,

[00:10:23] just like in health care, we have a people challenge

[00:10:26] around burnout and clinical engagement and things like that.

[00:10:29] The states grappling with kind of a similar fallout

[00:10:32] was in a different state.

[00:10:33] Oh my goodness.

[00:10:34] Where they hired a lot of folks to help manage the onboarding

[00:10:39] of all of these patients in the program

[00:10:41] that they weren't discontinuing at the rate

[00:10:43] that they were previously before the state of emergency.

[00:10:46] So they wound up having a ton of growth

[00:10:48] in the Medicaid coverage program at this time

[00:10:50] because they weren't canceling any of that coverage

[00:10:53] for any of these patients.

[00:10:55] Well, when the Medicaid re-enrollment process

[00:10:58] began last year, there was a big conversation

[00:11:02] around how do we engage with the patients

[00:11:04] that have Medicaid today and ensure

[00:11:07] that they have proper coverage or that they're qualified

[00:11:11] for continued coverage or if they don't qualify anymore,

[00:11:14] that we're going to have them roll off

[00:11:16] in some kind of timely manner.

[00:11:17] And how do we communicate that from the state level?

[00:11:20] So I received a few letters last year from the state

[00:11:26] indicating that some assessment was going to be coming up,

[00:11:29] which was broadly speaking,

[00:11:31] I knew about the Medicaid dis-enrollment process.

[00:11:34] It seems like insurance always kind of does

[00:11:36] a reassessment, you know?

[00:11:38] Like, and it doesn't, it seems like,

[00:11:39] oh yeah, it'll just be automatic, duh, you know?

[00:11:42] And my son already qualified for the program clinically

[00:11:46] and I welcomed that conversation when I could have it.

[00:11:51] But there was beyond the announcement

[00:11:53] of the communication,

[00:11:54] there was no other communication around

[00:11:56] really that process.

[00:11:57] And the challenge is a lot of the talent

[00:11:59] that they onboarded through the pandemic

[00:12:03] did not onboard with proper IP sharing

[00:12:08] around how to discontinue coverage once it's there.

[00:12:12] What does it look like when a patient's

[00:12:14] no longer eligible for Medicaid?

[00:12:16] So there was a bit of a breakdown internally

[00:12:18] at the state level on how to best communicate this.

[00:12:20] So when I contacted the state and said,

[00:12:22] hey, I know I have a re-enrollment coming up

[00:12:26] for my son, I want to be proactive with you

[00:12:29] about what you need to ensure

[00:12:31] that there's no disruption in coverage.

[00:12:35] There was nobody at the state that I could talk to.

[00:12:38] So I called several times, which to begin with,

[00:12:41] resulted in probably at least 12 hours of holding

[00:12:47] over several phone calls just to get somebody on the phone.

[00:12:50] And then once I got them on the phone,

[00:12:51] they weren't able to help me.

[00:12:53] And they even escalated it up to managers

[00:12:55] and the managers did not know what to tell me

[00:12:57] because my son was re-eligible

[00:12:59] not because of financial eligibility,

[00:13:01] he was eligible because of this MVC program.

[00:13:05] But they didn't have the right people in place

[00:13:07] to help manage those exceptions.

[00:13:09] So what has unfolded,

[00:13:12] what ultimately unfolded for us

[00:13:14] was on my son's fifth birthday,

[00:13:17] December 1st, the next day of the month,

[00:13:21] while he's in the middle of brain cancer treatment

[00:13:24] for this recurrence he found in September,

[00:13:26] he's actively receiving radiation on a daily basis

[00:13:28] with general anesthesia.

[00:13:30] So we're talking about,

[00:13:31] we can't afford clinical disruptions.

[00:13:33] We're highly reliant on this care to be followed through

[00:13:38] in the time that which is prescribed.

[00:13:40] I get notified as we're being discharged

[00:13:43] on Thursday, November 30th, which is his birthday,

[00:13:46] and that he's no longer gonna be eligible for coverage

[00:13:50] the next morning, which is a Friday.

[00:13:53] What a nightmare for a medically complex situation

[00:13:57] to put you in that.

[00:13:59] Yeah, and so we're getting discharged

[00:14:00] and I already at this point contacted

[00:14:03] and tried to find somebody to talk to.

[00:14:05] And the only way that we found out

[00:14:07] that he was no longer gonna have coverage

[00:14:09] was that upon discharge from the hospital,

[00:14:12] my private duty nursing agency that we work with

[00:14:15] to help provide care and support for August

[00:14:17] when he's home, told me they ran his benefits

[00:14:20] and they came back as an eligible enough stay.

[00:14:23] So that wasn't even a communication from the state

[00:14:25] to tell me that he was not gonna be eligible.

[00:14:27] The private duty nursing agency just said,

[00:14:30] I can't get paid for services.

[00:14:32] So until we get this sorted out, we can't serve you.

[00:14:36] So not only was he not gonna have coverage

[00:14:38] the next day, mid treatment,

[00:14:40] but my private duty nursing was now being withheld,

[00:14:43] which has provided critical support

[00:14:45] over the last four and a half years

[00:14:47] of caring for him.

[00:14:50] What a nightmare.

[00:14:52] So what happened?

[00:14:55] So thankfully I got in touch.

[00:14:58] I really just was a whole bent on finding a solution

[00:15:04] and started contacting some media about the issue

[00:15:08] and started reaching out to several parent groups,

[00:15:11] parent advocacy groups for special needs kids.

[00:15:14] And it was through one of those groups

[00:15:17] that I got connected to both reporters

[00:15:19] covering the Medicaid unwinding in the state of Texas,

[00:15:22] but also was able to get connected with this one consultant

[00:15:25] who was working with the states

[00:15:27] and helped manage these exceptions.

[00:15:29] And what she did the next day is helped me

[00:15:32] adjust the paperwork that I had already submitted

[00:15:35] with the proper nuances to make sure

[00:15:38] that was eligibility wouldn't get in question.

[00:15:40] And then they went through the process

[00:15:42] and found the one person managing these exceptions

[00:15:44] to provide the approval.

[00:15:45] We got approval for him within 10 hours.

[00:15:48] One person in the entire state of Texas, what?

[00:15:53] Yes, to my knowledge that's what I was told.

[00:15:57] Wow, I'm so sorry that happened to you

[00:15:59] and it happened to so many people in Texas.

[00:16:02] It's like you and the rest of Texas

[00:16:05] was dealing with a lot of this situation it seems.

[00:16:08] Yeah, and I think that's the big takeaway, right?

[00:16:11] I mean, we have our story

[00:16:12] and our own challenges around that.

[00:16:16] And frankly, we have a luxury

[00:16:18] and being able to expedite my son's application.

[00:16:21] One, because he had an answer to diagnosis

[00:16:23] that was an active treatment.

[00:16:25] And I was allowed and had some of the resources

[00:16:29] to go and find the right solution

[00:16:31] for him in a timely manner.

[00:16:33] Those things aren't a luxury that everybody has

[00:16:36] and every patient is not equipped with those resources.

[00:16:41] And frankly, they shouldn't be.

[00:16:44] Especially if they're getting services,

[00:16:46] if they're getting a program like this,

[00:16:49] there needs to be a better way to make sure

[00:16:51] that the patients that are getting dropped

[00:16:55] from these programs have a chance to talk with somebody

[00:17:01] about how to either ensure they maintain the eligibility

[00:17:04] because it's complicated.

[00:17:06] It's complicated for people

[00:17:07] who have been in this industry 15 years.

[00:17:10] It's complicated for me, there's nuances to it

[00:17:13] that are not intuitive, even to the best of our ability.

[00:17:17] And it's a huge problem,

[00:17:19] especially in these special needs communities

[00:17:22] where these children either are medically complex

[00:17:24] or have other needs that require them

[00:17:27] to have this level of coverage and support socially.

[00:17:30] And these families are left abandoned without a solution.

[00:17:35] And there's some promise that it'll be retrofitted

[00:17:39] and they will have things resolved later on.

[00:17:42] But what's resulting in this is people are not having

[00:17:46] the care that they need,

[00:17:47] they're not receiving the care they need

[00:17:48] at the time that they need it.

[00:17:50] They might be going without services.

[00:17:52] As an example, private duty nursing.

[00:17:55] Private duty nursing is such an essential option

[00:17:59] to preserve the economic potential

[00:18:01] of caregivers in this country.

[00:18:03] It is an absolute necessity.

[00:18:05] Interestingly enough, Medicaid is the only real solution

[00:18:10] to provide coverage for private duty nursing.

[00:18:12] A lot of the primary payers

[00:18:16] do not cover private duty nursing

[00:18:17] because it's really a safety net option.

[00:18:21] So in cases when your child doesn't have

[00:18:24] the Medicaid eligibility that they thought

[00:18:26] they were gonna have and we're not having to go

[00:18:28] without private duty nursing,

[00:18:29] what that means is that caregiver now

[00:18:31] cannot go to work the way that they have been.

[00:18:34] That child cannot experience, you know,

[00:18:36] if they go to school, they might not be able

[00:18:38] to go to school without that level of support.

[00:18:41] Although the school legally is supposed

[00:18:43] to make accommodations functionally and practically,

[00:18:47] that's not always the best solution

[00:18:50] for the family and for that child.

[00:18:54] In cases where there's a trach, you know,

[00:18:56] you need to have somebody there with that child

[00:18:58] at all times to respond almost like a lifeguard,

[00:19:01] you know, at a pool.

[00:19:02] If you have a child drowning,

[00:19:04] you have to be able to respond in that real time.

[00:19:06] You can't call somebody to come get them

[00:19:09] that's down the hall and rely on their response time

[00:19:13] to get there and respond in case of emergency.

[00:19:16] So it's just such an intimate or an intricate environment

[00:19:23] of nuances and subtleties that frankly,

[00:19:27] just require compassion and empathy and attention

[00:19:30] to really ensure that the families are supported

[00:19:34] in the way that the programs were established to province.

[00:19:38] Yeah, what basic improvements do you feel

[00:19:41] or changes you feel would be really necessary now?

[00:19:43] Like after this experience you've had,

[00:19:45] you're like they need to do this, this, this, this

[00:19:49] in the Medicaid enrollment and renewal process

[00:19:51] to prevent things like that from happening

[00:19:54] in the future, especially for medically complex situations

[00:19:57] like pediatric cancer and more.

[00:19:59] Absolutely, I think that there is absolutely a place

[00:20:05] for automating the process as much as possible.

[00:20:08] That I'm not in contest with.

[00:20:10] The exceptions that exist,

[00:20:12] I think are something that should be acknowledged

[00:20:17] as exceptions and the patient population

[00:20:20] that would be eligible for these exception

[00:20:24] like conversations, I believe merit a personal connection.

[00:20:29] There should be somebody who these patients

[00:20:31] or the caregivers really can call and say,

[00:20:34] I have questions, I don't know how to fill this out.

[00:20:38] I don't know how to do this.

[00:20:39] How do I make sure that we're not having coverage

[00:20:42] disrupted for my child?

[00:20:44] And having that human connection

[00:20:46] and that point of contact is so essential.

[00:20:49] It's the only way that we can also ensure really

[00:20:53] that there is a trauma informed approach to this.

[00:20:55] By automating the process the way in which it does,

[00:20:59] it completely ignores the reality

[00:21:01] that these families have to endure.

[00:21:03] And the reality as well is when you are navigating

[00:21:09] a really intense experience like the caregiver

[00:21:11] of a child with medical complex need,

[00:21:13] it is a highly traumatic experience on a day-to-day basis.

[00:21:16] There's a lot of micro traumas all along the way.

[00:21:19] Well, when you're in a traumatic state of mind,

[00:21:23] that's like fight or flight,

[00:21:24] the executive functions your brain is capable of having

[00:21:28] and you go out the window.

[00:21:28] You do not have those functions the way maybe somebody

[00:21:32] who's not experiencing trauma might be able to handle that.

[00:21:35] So it's important that we have a program or a process

[00:21:38] that acknowledges that reality.

[00:21:40] If the people that are having to solve these problems

[00:21:44] don't have the equipment to solve them for themselves

[00:21:46] in the way that we need them to,

[00:21:48] well let's create a scenario where they feel supported

[00:21:53] and do so in a trauma informed way,

[00:21:55] recognizing the reality of the experience

[00:21:57] in which they are managing the care for their child

[00:22:01] the way they are.

[00:22:02] And then let's problem solve around that.

[00:22:04] Give them a channel to talk to somebody

[00:22:06] that can help answer these questions for them.

[00:22:09] What can government agencies and policymakers do

[00:22:13] to help you and like help families like yours?

[00:22:16] Like, or is there something that could be done?

[00:22:18] Could they help change the process

[00:22:20] or is it something that really needs to be changed

[00:22:22] from the inside out?

[00:22:24] I mean, I wish I had the answer to that so clearly.

[00:22:28] I think taking that trauma informed approach

[00:22:31] is really essential no matter what that looks like.

[00:22:35] From a legislative standpoint,

[00:22:37] I think this is back to the value of patient stories.

[00:22:40] We have to hear what the experience of day-to-day life

[00:22:44] is like for these patients and their families.

[00:22:47] Not just the ones receiving the coverage,

[00:22:50] but the people supporting the implementation

[00:22:53] of that coverage.

[00:22:54] How are all, how is that dynamic?

[00:22:58] How is that population of people

[00:23:00] that are experiencing the world in this way?

[00:23:02] How can we best support them

[00:23:03] and meet them where they're at in that?

[00:23:05] And the only way to do that

[00:23:07] is to understand the day-to-day life of these families

[00:23:09] that they're having to go through.

[00:23:11] What is it like to have private duty nursing?

[00:23:14] How do we ensure that the policies that we create

[00:23:17] are in support of environments

[00:23:19] where private duty nursing's engaged?

[00:23:23] You won't know that unless you ask the families themselves

[00:23:26] and hear from the patients,

[00:23:27] hear from the caregivers directly.

[00:23:30] The legislators and the people in policy making decisions

[00:23:33] have to hear those stories to be best informed

[00:23:35] about how to craft those policies.

[00:23:37] If they don't hear those stories,

[00:23:38] they will miss the mark

[00:23:39] and we're gonna have programs

[00:23:40] like what's happening with the Medicaid unwinding issue

[00:23:44] create way more havoc and crisis than actual benefit

[00:23:49] and any sort of resources recovered at the state level.

[00:23:54] Amen, sister.

[00:23:55] Seriously, I mean, it's a no-brainer

[00:23:58] and it's shocking that this isn't part of the system

[00:24:01] and really shows a hole within the healthcare system

[00:24:05] which is that the patient voice and caregiver voice

[00:24:08] is not being asked or listened to.

[00:24:10] And so that does need to change.

[00:24:13] It does need to change.

[00:24:15] I'd love for you to share

[00:24:16] a little bit about August's artists.

[00:24:18] Tell me a little bit about this organization

[00:24:21] and what you all do.

[00:24:23] Absolutely, so August's artists

[00:24:25] was effectively launched formally about two years ago

[00:24:30] and we started a pilot program

[00:24:32] with the oncology department

[00:24:34] at Children's Health in Dallas, Texas

[00:24:36] which is where my son was treated

[00:24:38] for his cancer treatment.

[00:24:39] And it was really inspired

[00:24:41] from our own personal experiences as patient

[00:24:44] as a patient and caregiver in this environment

[00:24:47] what the families do when they are inpatient

[00:24:51] is they seek, you know, everyone seeks to control

[00:24:57] their environment to the extent that they can

[00:24:58] especially when you're in a really unpredictable scenario

[00:25:01] like a cancer diagnosis.

[00:25:03] And when you're in the hospital

[00:25:05] there's not a whole lot of opportunities

[00:25:07] to engage with your environment

[00:25:08] the way you would at home.

[00:25:09] You can't redecorate things, you can't paint the wall.

[00:25:13] You know, you can't order a new piece of furniture

[00:25:15] to have in that space that makes you feel a certain way.

[00:25:18] You're really casted to that experience.

[00:25:20] Unfortunately, it's just how healthcare is structured

[00:25:23] and transactionalized in our country.

[00:25:27] But there are opportunities to personalize that space

[00:25:30] that become therapeutic.

[00:25:31] And so what the families do on their own

[00:25:35] is they use these wax window crayons

[00:25:38] to draw pictures on the door of their hospital room.

[00:25:40] And it seems really insignificant

[00:25:42] when you think about it like that.

[00:25:44] But what happens is that artwork becomes such a fixture

[00:25:48] of that experience of that space.

[00:25:52] It becomes a part of the identity that that family carries

[00:25:56] in their experience of care in that room

[00:25:59] and becomes a badge, if you will as well

[00:26:03] of what you're navigating.

[00:26:05] And an example, you might be in the Minnie Mouse room.

[00:26:08] And as you talk to other families

[00:26:10] and interact very carefully on the oncology floor,

[00:26:15] you might need another parent at the coffee machine

[00:26:18] and say, yeah, we're over in the Minnie Mouse room

[00:26:19] or we're over in the Nemo room.

[00:26:21] Oh, I love that.

[00:26:22] And they'll say, oh, okay, I know what room you're in.

[00:26:24] They're not talking about room number six.

[00:26:26] They're gonna say, oh, I've seen that picture.

[00:26:29] And when you're in oncology

[00:26:31] or really any complex inpatient environment,

[00:26:35] you really getting to go outside is not always part

[00:26:39] of where your day-to-day experience is.

[00:26:41] Usually that's a big step in the direction of a discharge.

[00:26:45] But if you're still working your way towards being able

[00:26:48] to experience outside and get sunshine and those things,

[00:26:52] sometimes just getting outside of the door

[00:26:54] to your room is a major milestone.

[00:26:56] And when you do that and you accomplish that,

[00:27:00] you can actually go for a walk around the floor.

[00:27:03] And what do you look at

[00:27:04] when you go for a walk on the floor?

[00:27:06] Look at all the artwork on all the floors.

[00:27:07] The doors.

[00:27:08] The doors.

[00:27:11] So as I was experiencing this first game with my son

[00:27:16] three o'clock in the morning,

[00:27:17] and I'm standing there drawing a picture

[00:27:18] on my son's door,

[00:27:20] but that also is a therapeutic experience to do artwork.

[00:27:24] And it occurred to me the gravity

[00:27:26] of the situation we were in.

[00:27:28] I'm sitting there contemplating,

[00:27:31] if my son doesn't make it,

[00:27:33] how do I acknowledge and honor this experience

[00:27:38] and give back to the community in a way that honors him?

[00:27:42] Right, that's one key to that.

[00:27:43] And if he does make it,

[00:27:45] how do we give back and provide encouragement

[00:27:48] and support and hope for other families

[00:27:50] that are in these same shoes?

[00:27:52] And what also occurred to me,

[00:27:54] and that I'm drawing,

[00:27:56] that the crayons I'm drawing with

[00:27:58] were provided by the nurses on the floor.

[00:28:00] The nurses were paying out of pocket

[00:28:02] to make this community stock of crayons available.

[00:28:05] And I thought that the hospital

[00:28:06] wouldn't be supportive of that initiative.

[00:28:07] They absolutely will.

[00:28:09] But the nurses saw the value

[00:28:11] of just making these crayons available for the families.

[00:28:14] And they themselves used the artwork

[00:28:17] when they were low on a patient ratio,

[00:28:20] or maybe they were really connected with their patient

[00:28:22] and they had an artistic flair.

[00:28:24] They might have a little bit of time

[00:28:25] to draw them a picture.

[00:28:27] And the nurses would do this as well.

[00:28:29] So they all rallied around this concept of artwork

[00:28:33] kind of as a therapeutic outlet,

[00:28:35] but also as a way to honor the experience and space

[00:28:38] that everyone was sharing in those moments

[00:28:41] and the intensity and gravity of those experiences

[00:28:44] and the circumstances around us.

[00:28:46] So it occurred to me that there should be

[00:28:50] at least some way for us to make crayons available

[00:28:53] for every patient family across the country

[00:28:55] that is inpatient.

[00:28:57] How can everybody have access to art in this way?

[00:29:01] And then COVID happened.

[00:29:03] So, you know, there were some nuances

[00:29:07] to what we could make available to families

[00:29:10] because the experience of the hospital

[00:29:12] changed very dramatically with the pandemic.

[00:29:15] Maybe previously when you could leave your room,

[00:29:18] you no longer were able to leave your room

[00:29:20] or you could have your family members with you there

[00:29:23] and no longer that was an option.

[00:29:24] So the trauma was intensified with the pandemic

[00:29:29] and the need for outlets like this

[00:29:31] became ever more critical.

[00:29:33] And so what also occurred as we were working

[00:29:36] through this thought exercise as a board

[00:29:38] and the folks that I had engaged

[00:29:40] to kind of help problem-solver on this

[00:29:42] was it's not even access to the art even

[00:29:45] that's so helpful,

[00:29:47] but as we learned about trauma

[00:29:49] and the impact of trauma on your ability to heal

[00:29:52] and how do you move forward in life

[00:29:54] after an experience like cancer

[00:29:57] and take this trauma-informed approach to your healing?

[00:30:02] What is it about the art?

[00:30:04] And it's actually the artwork becomes a badge

[00:30:09] and a symbol for that experience

[00:30:12] because when you leave the hospital,

[00:30:14] you don't get to bring that hospital with you.

[00:30:16] You don't bring the hospital room home with you.

[00:30:19] You have a pillowcase, you may have a blanket,

[00:30:21] but you don't bring that space home with you.

[00:30:23] And this very intense informative experience

[00:30:25] that happened in this very specific room

[00:30:29] almost feels like a dream and not real once you leave.

[00:30:33] You're like, did that really happen?

[00:30:34] Was that real life?

[00:30:36] My life's changed now

[00:30:37] and I don't even remember what just happened.

[00:30:41] Wow.

[00:30:42] So the artwork becomes this focal point in your mind.

[00:30:47] It becomes a fixture for the, it validates.

[00:30:50] Yes, it did in fact happen.

[00:30:52] So what we aim to do with August Artists

[00:30:54] is actually commemorate the artwork

[00:30:56] that these families and the patients make

[00:30:58] when they're in the hospital room.

[00:31:00] And we do this by having them take a picture

[00:31:02] of the artwork and submit it.

[00:31:04] And then we take that artwork,

[00:31:05] we make it digital so they can use it

[00:31:07] and they can have it as a digital asset

[00:31:09] if they wanna use that for something.

[00:31:10] If they wanna make a shirt for themselves or a hat,

[00:31:13] they can do that.

[00:31:14] But we also put it onto a poster for them.

[00:31:17] So where this artwork is in the hospital room,

[00:31:21] they can now take that and put that on their bedroom door

[00:31:23] and say, I went through that experience that was real.

[00:31:26] That really happened to me.

[00:31:28] And I can feel validated

[00:31:33] that that shaped who I am now today,

[00:31:35] who I am today was marked by this image

[00:31:39] that I made while I was in the hospital.

[00:31:42] Or frankly, if they wanna burn it

[00:31:43] and have a big bonfire party,

[00:31:45] they're welcome to do that too.

[00:31:46] True, true.

[00:31:47] It's up to them at that point,

[00:31:49] but they have this beautiful symbol of this experience

[00:31:52] that was so hard and it's wild to think of the beauty

[00:31:57] that can come from so much chaos.

[00:31:59] And it's so beautiful.

[00:32:02] So how can people help August artists?

[00:32:04] What are things that people can do

[00:32:06] to help you grow the organization

[00:32:08] and bring it even more national?

[00:32:10] I know it's growing already on its own

[00:32:13] just like a wildfire.

[00:32:15] Tell me about that.

[00:32:17] Capacity is a big one.

[00:32:18] If you wanna donate, you believe in the vision and mission.

[00:32:21] I ask you please contribute

[00:32:23] to what extent you feel comfortable.

[00:32:25] You can visit us at augustartist.org.

[00:32:27] I have some examples of the artwork

[00:32:29] that I personally made while I was in the hospital.

[00:32:31] And then social media,

[00:32:33] we're aiming to actually share a little bit more

[00:32:35] of some of the artwork that our patients

[00:32:37] sort of made as well that we've supported.

[00:32:40] And really too, if you're a healthcare worker

[00:32:44] on the clinical side or even child life and spiritual care,

[00:32:48] we wanna work with you too.

[00:32:49] And as we roll this program out nationally,

[00:32:52] we really want feedback from you

[00:32:54] because we wanna make sure that this program

[00:32:57] isn't something that's happening to the patients

[00:32:59] but it is something that's working with them

[00:33:00] in their healing.

[00:33:01] And it really is a tool for their own healing process

[00:33:04] whether that's defined clinically

[00:33:06] or emotionally and spiritually.

[00:33:08] So please, if there is an opportunity

[00:33:10] for us to work together,

[00:33:11] I would love to brainstorm

[00:33:13] and think about the way that we can roll this program out

[00:33:16] for your patient population

[00:33:17] in the best and most supportive way that we can.

[00:33:19] That's also trauma-informed.

[00:33:22] This is so inspiring, Erika.

[00:33:23] Thank you so much for being so generous

[00:33:25] sharing your experience.

[00:33:27] It's so hard and not easy to do so.

[00:33:30] And I just wanna recognize that.

[00:33:31] I appreciate you being generous

[00:33:33] and willing to share your wisdom

[00:33:34] so others can learn from it.

[00:33:35] And I appreciate that

[00:33:37] and turning that pain into purpose

[00:33:40] with this organization.

[00:33:41] It's inspiring to say the least, the very least.

[00:33:45] Thank you.

[00:33:48] That's all we can do, right?

[00:33:49] I mean, that's the best thing we can do

[00:33:51] is when we endure something,

[00:33:53] what can we share with others?

[00:33:55] So maybe it's a little less hard for them.

[00:33:58] And then what can we do as a community

[00:34:01] to just support each other in our healing?

[00:34:03] We all have trauma.

[00:34:05] I've said many times, we can't compare trauma either

[00:34:09] and you can't compare a cancer diagnosis

[00:34:12] to falling off your bike and hitting your head

[00:34:14] and maybe didn't even need to go to the ER,

[00:34:15] but it can still be traumatic.

[00:34:17] And that trauma is real and it deserves validation,

[00:34:21] however that looks.

[00:34:22] And I think just taking that trauma-informed approach

[00:34:26] to life and having that care

[00:34:28] around how we can support each other

[00:34:30] is just ever more critical

[00:34:32] coming out of things like the pandemic

[00:34:33] and just navigating the world in which we are today.

[00:34:37] And I'm encouraged too.

[00:34:39] I'm encouraged that the industry seems to be shifting

[00:34:42] in this direction.

[00:34:44] We've long talked about outcomes-based care

[00:34:46] and what's possible when we look at the whole person

[00:34:49] and the whole family or population health.

[00:34:51] And I think we're moving in that direction.

[00:34:53] And I think programs like August Artists

[00:34:55] are more closely aligned with that environment.

[00:34:58] And I think we're moving in that direction,

[00:35:00] which is exciting.

[00:35:02] It is hopeful.

[00:35:02] I've seen that too.

[00:35:03] And just I've seen that the industry generally

[00:35:06] at conferences and even articles

[00:35:09] are starting to quote patients and caregivers

[00:35:11] and patient advocates and care partners.

[00:35:13] And they're starting to see them as experts

[00:35:16] that they really are, which is inspiring

[00:35:17] and totally sets the stage for an amazing world

[00:35:20] where August Artists can just take off

[00:35:23] and be that amazing support that it could be.

[00:35:26] So, Hi Tea with Grace loves to learn about the industry

[00:35:29] and we also love to learn about you.

[00:35:31] And so I just really wanna know

[00:35:34] in your personal life overcoming

[00:35:36] so many challenges and obstacles,

[00:35:38] what are things that you do to work your best

[00:35:40] and make a difference?

[00:35:41] You're a professional in so many capacities

[00:35:44] and a professional mom in so many capacities.

[00:35:47] What are the habits that you have

[00:35:49] that just keep you on your A-game?

[00:35:52] Oh gosh, such a good question.

[00:35:55] A-game.

[00:35:57] Beyond art, my mindfulness towards my own healing

[00:36:02] from trauma, but there's been a lot of that of course.

[00:36:05] I have an obvious sensitivity to that too.

[00:36:08] And I try to deploy that in a lot of the ways

[00:36:09] that I work professionally.

[00:36:12] Personally though, one of the things

[00:36:14] that's been incredibly helpful for me is movement.

[00:36:18] And I would argue movement is a form of art

[00:36:20] to some extent.

[00:36:22] So I train for triathlons.

[00:36:24] I'm one of the crazy ones

[00:36:26] that goes for the long Ironman like competitions.

[00:36:31] And I find a lot of healing in the experience

[00:36:34] of working through those extreme endurance events.

[00:36:38] There's an immense community in that world too

[00:36:40] that's been very healing as well.

[00:36:43] Trauma exists everywhere, right?

[00:36:46] And I think it's especially poignant

[00:36:48] in that endurance world.

[00:36:50] So there's a lot of shared experiences there

[00:36:52] and a lot of really amazing patient stories

[00:36:54] that even come from the most elite athletes.

[00:36:56] And so personally, I like to invest in that space

[00:37:01] for me in addition to being mom

[00:37:03] and all of those other identities that I carry.

[00:37:06] It's so funny, I've known you so long

[00:37:08] and I had no idea about that, about you.

[00:37:10] And that's incredible.

[00:37:12] It's a huge part of who you are.

[00:37:13] So I'm so thrilled that you do that.

[00:37:16] And I loved learning that alongside

[00:37:18] the other folks here today.

[00:37:19] Thank you for sharing it.

[00:37:21] So to finish this conversation off, right?

[00:37:23] Where can our listeners find you online?

[00:37:26] Yeah, I'm not too hard to find.

[00:37:28] You can find me at The Great Chalupa,

[00:37:30] spelled GR8, like the way you would write

[00:37:34] have a great summer in your book.

[00:37:36] But The Great Chalupa on X, AKA Twitter, old Twitter

[00:37:40] and LinkedIn as well.

[00:37:42] And Instagram, you can find me at that tag as well.

[00:37:46] Awesome.

[00:37:47] And did you happen to bring tea with you today?

[00:37:50] It's black coffee.

[00:37:52] Tell me about your mug.

[00:37:54] PR-otic, oh my gosh, you can't see it.

[00:37:56] PR-otic table of the elements.

[00:38:00] Oh, like periodic, but PR-otic.

[00:38:05] I love that.

[00:38:05] So it has client sponsorship, key message, Zoom.

[00:38:09] Oh, and it says tea on here.

[00:38:11] So I think we should be good.

[00:38:12] Cheers to that.

[00:38:14] Cheers to that.

[00:38:15] Well, thank you so much for joining us

[00:38:17] and really appreciate you sharing your wisdom with us

[00:38:20] and your experience.

[00:38:22] And we just wish you and August

[00:38:24] and August artists all the best.

[00:38:27] You guys are, it's a wonderful community

[00:38:30] and I couldn't ask for anything more.

[00:38:32] So thank you.

[00:38:33] Appreciate it so much.

[00:38:35] And thanks to you folks for joining us too.

[00:38:37] Check out the Hi Tea with Grace podcast

[00:38:39] for more great interviews like Erica today.

[00:38:41] Cheers.

[00:38:42] Like a Girl Media is more than a media network.

[00:38:45] It's a community.

[00:38:46] We wanna meet you and amplify your voice

[00:38:49] and the voices of outstanding women

[00:38:51] innovating in healthcare.

[00:38:52] Interested in starting your own podcast

[00:38:54] or hosting an event near you?

[00:38:56] Connect with us online or in person.

[00:38:58] We're here to support and empower you.