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Healthcare Choices for Families Facing Profound Autism with benefitbay®’s Brandy Burch Thompson · Inchstones with Sarah | Autism Advocacy & Caregiver Stories

• 0:00
  Speaker A: Hey everyone. Welcome back to the latest episode of the Inchtones podcast. I know that if you've listened along for the good portion of the year, I do not shy away from opening up the conversation to beyond just those of mothers and caregivers of profoundly autistic children, but to the community of what actual realized support looks like from a foundational level of mothers and how we guide our children in a world that is seemingly not meant for them and for their experience as a, as a child and human. Today I have Brandi Thompson and Brandy is with Benefit Bay and she really is pushing the narrative on what it looks like to allow for us to decide what is best for our children and especially when it comes to what the employer that you work for and the benefits that are around that. So, Brandy, thank you so much for being here today. And I just really think the work you're doing is, it is like, it is central to the families like mine who are trying to navigate life.
• 0:59
  Speaker B: Yeah, it is. Well, thanks Sarah. Thanks for having me. I have listened to a few of the podcasts and a fan of the show and I'm excited to participate today and share what we're doing to try to make the impacts for healthcare outcomes and access to care and behavioral therapies available to everyone who needs them.
• 1:14
  Speaker A: Yeah, so I mean my off the cuff things, access to therapies. Right. When you become a special needs mom or you start early intervention with child children that have delays, the assumption is okay, my child needs this, this will be given to me and whatever therapy I and their care team sees as necessary, shouldn't that be what I am able to get?
• 1:35
  Speaker B: Yeah, we would think so. Because early intervention and behavioral therapies can can mean long term impact and outcomes for being able to be independent or any one of those other scenarios. But right now our US Healthcare and access to care system is very broken and we don't even control the decisions that are made.
• 1:54
  Speaker A: Right. So how would you help or at least guide a mother or caregiver in that situation where, you know, here's an example that I can use of my own. It was very obvious that my daughter Millie, words and elicitation and verbal vocal play grew during music therapy. Music therapy generally is not covered by insurance. Take me through the process of what you are looking to grow when, when I as a mother know so deeply that that kind of therapy would grow her ability to be verbal.
• 2:27
  Speaker B: Yeah, I mean what, what I'm looking to help impact in the market and what we do here at benefitbay is we Allow choice in regards to those benefit dollars that your employer is spending a lot of money on. They're just trying to fit all of the humans inside their system located in all of the geographies in one box. That box becomes very expensive to cover all of those various needs or possible needs and it can't cover everyone. So in, in the benefit pay strategy, we allow defined contribution at the employer level so that the employee can go and seek the plan and the carrier and the services that are going to best fit their economic needs, their child's needs, their needs, their self needs, whether that be behavioral therapy or mental health or we have chronic illnesses in America, so we have diabetes and we have asthma and we have menopause care. That needs to be happening for ladies. It's, it's all encompassing for me and not just towards autism. It's towards what everyone's facing out here in trying to get the best, for the best outcome for themselves or their children or their families. What happens right now is our employer gets to make that decision and, and so they have to make the decision that fits everyone in at least a square and they can't have any outliers. That costs a lot of money but really doesn't give much access. There are very few coverages. It basically has a broad network to go get a basic service, but it doesn't have great exposure when it comes to the actual services one individual needs. The innovation out here for some new carriers that are wanting to win employer business is they are filing needs specific care plans. So we, we don't yet have an autistic plan, but I'm going to advocate for an autism, you know, specific plan with the carriers are being really innovative. Those plans are allowing for specific coverages that are currently not allowed and can be paid for with those employer dollars. And when it's managed in a way that you're bringing lots of members into the system and allowing them to get the access they need and have the outcomes they have. They have incentives through the ACA market to get out there. So there is a reason why carriers would be willing to do this and it's to get to a competitive place where there is brand loyalty by the actual consumer. So we all buy everything that we buy today. We can research it, we can figure it out, we can advocate for care. What we have to navigate right now though is all of the ridiculous, you know, pre authorizations, network access out of pocket, not allowed, get all of the, you know, 10 visits in so that they can document your case that maybe you could get coverage.
• 5:06
  Speaker A: I mean all you got just listed. I mean that is like so stressful. It's a level of cortisol that was raised and you me just hearing you list those up because I, because that is like day to day, week to week, you know, starting the school year, getting all these things in a row and it's, it is such a compounding force on medically complex families that I always say within the system of health care to expect that a family navigates that just as like a side part of the family is. It's paralyzing. It's absolutely paralyzing. And I, and I for others that like those like that list of like you said, like getting the 10 visits in filing the prior authorization. I mean I joke with another mom on one episode I said the fact that I rattle off the diagnostic code for autism and like apraxia. I mean the fact that we should all get tattoos that say F84.
• 5:58
  Speaker B: Yeah.
• 5:59
  Speaker A: Ridiculous that I even know that.
• 6:01
  Speaker B: Yeah, it's crazy because you've had to advocate for the people you love in what was even harder for me in corporate America. So I came up the ranks as a CFO finance leader. I lead with the heart and humans and people on my team really matter. However, I would find myself as a finance leader terrified when we would hear a cancer diagnosis, when we would know we had a high risk pregnancy, when we know we were going to have premature babies on the team, when I myself have a daughter that has a syrinx which can require a neurosurgery at that diagnosis code and her going to see a neurosurgeon every year and getting an M N R I creates an underwriting and risk profile at the carrier that cost my organization money. Right. And so the whole game is set up to fail. One, but two, I myself as an employer or someone who made fiduciary responsibilities would be concerned that I now have to pull back something on insurance or I now have to cut individuals jobs because someone needs access to care that after you're paying $36,000 a year for a family as an employer and the employee's probably paying something like 6,000. So combined you've paid 42,000 the deductible 6. We're at 48,000 before someone can even access care and usually can't access the care they care about. Real money that is real money that.
• 7:22
  Speaker A: Could be, but it's not just like this like floating number like that is, that is cash that is helpful. I mean that and, and, and you know you say it from a, from a company and like being a, you know, cfo.
• 7:33
  Speaker B: Yes.
• 7:33
  Speaker A: When the, when it, when your heart is, is the child as a, as a parent or caregiver or, you know, you're an employee of something, that also has that residual effect of like, I'm a burden now. I'm not, you know.
• 7:45
  Speaker B: Yeah. I hope this never happens.
• 7:48
  Speaker A: I hope this never happens because, gosh, better, better them than me. Because this is like, this is ex. This is, this is, this is weighted on not just like, you know, the heart, this is weighted on like the availability for the company to financially help me.
• 8:00
  Speaker B: Right. Or succeed. And so we're all so frustrated with the system. The employer, the employee, those who need access, the people providing the care, going to medical school, $290,000, getting 15 minute visits for their patients, having to file 20 authorizations to get the care they need. The entire system is what's got me passionate about being at Benefit Bay and trying to make an impact. You know, it's going to take a village and we're doing it a little bit at a time, but I feel really passionate about what we're doing.
• 8:27
  Speaker A: What would be, could you take a. Take me through and take everyone listening through what an example of that might look like within maybe a family of children like mine where, you know, I am the mother and employee at a company and I'm receiving, you know, 20 to 30 hours a week of ABA therapy for my toddler. And knowing that this is not going away, this is a lifelong diagnosis and I am CEO of their care and I have a health plan that only covers X. What would, what would, I guess the ideal outcome if Benefit Bay was implemented.
• 9:03
  Speaker B: In my, in your employer? Yeah. So your employer would use those same dollars they were traditionally using towards your group product, which was priced significantly higher, to be able to cover everyone in the same box. They would take those dollars, they would put those to you. You then get to choose from the carriers buying your, like basically wanting to buy for your business. Right, Right. And so the part of the journey through Benefitbay is we help you evaluate all those SBD's and what are the therapies you need. You're able to put in all your providers, you're able to put your dependents, and you're able to put in the drugs. Right. So those drugs are going to have tears and it's going to tell you which carrier is going to be the best financial outcome and access to care for your family. You are going to make the decision that matters most to you and perhaps that's the one carrier that covers the majority of autistic therapies. And for another family, perhaps it's mental health and some, some, you know, hemotherapy. Like it could be anything that they're looking for. Right, but each plan is not going to cover every diagnosis code. Right, but they do have exclusions and inclusions based on the product and they're priced based on those inclusions and exclusions. They're priced based on their markets and their networks. You are also going to know which of those carriers have taken care of you and your child throughout this journey. Which were the biggest pain, excuse my French, if you cuss on this podcast, which were the biggest pains in the asses to get your access to care and which ones actually cared about you as a member. That's how you would use the journey. You would take those dollars, you would be able to put in all of your providers of therapy. You would be able to see, okay, this one covers nine of these things and doesn't cover one of these things. But look, the out of pocket max is X and currently we're paying I and this is gonna be that I would physically do like you would physically do that. We have licensed agents who help you who are clinical. So we hire registered nurses and occupational therapists. They know these diagnosis codes like the back of their hand. They are passionate, they were on the clinical side. They care about getting you what you need. So they're gonna help you make that decision. If you need the help or you can personally with your spouse or others at the table, make this decision for yourself. Right. You don't have to speak without one of ours, but it gets your employer also out of your diagnosis. The problem with healthcare right now and health insurance is your employer gets access to all of your claims. That is also not acceptable. Our health information should not be the not have access to HR and CFOs making the decisions. I understand we've turned into a self insurance game. So they want to know what is my risk. But how can it not be getting in their mind that they have XYZ employer that's costing the program XYZ dollars. And when there's further promotion opportunities or there's reduction in force decisions, how do you not land on those list? I want to believe we are better humans than that, but I myself have been inside companies where owners have directed decisions that are very much this way. That's why ACA was born is because preexisting conditions were blocking us all out of healthcare. Right? People can be upset and call it Obamacare if they would like. But what we need to remember is ACA gave new preexisting conditions for pregnant women who may have lost their job and had to seek another job. It removed preexisting conditions for diabetics to be able to access healthcare. Right. We should not be blocked out of healthcare because we have a lifelong condition. We should have an ability and we should have a carrier who actually cares about helping us remain healthy.
• 12:30
  Speaker A: Well, that's what you're saying, too, again. And this is broader than autism. Autism is a lifelong condition, or at least for the moment in time we're in. It's not going away.
• 12:40
  Speaker B: Right. There's not a cure. Right.
• 12:42
  Speaker A: That. And it's not to be necessarily cured. It's just to accept. I always say it's like whatever happens next is part of the evolution of science and medicine and the system and government and policy. And we have to sit in the knowledge of right now that is not going.
• 12:55
  Speaker B: That.
• 12:55
  Speaker A: It's not going away. I'm not going to wake up tomorrow. My children are going to be speaking and toileting on their own.
• 13:00
  Speaker B: Yeah.
• 13:01
  Speaker A: And at the same time, what I hear you saying is that it's not just profound autism and special needs, it's lifelong medical diagnoses for the parents, too, or the other children in the family. And that we need to be honest about what providers will actually help benefit or help the family live in that reality and move forward.
• 13:21
  Speaker B: Yeah. Yeah. And we need to start to move to a place where we have a voice as a consumer. So when employers and brokers are making the decision, they're going to make the decision on the highest bidder. And that's what happens often or the lowest price. They're not always going to be able to, you know, and they're dealing with their own juggles. They're trying to make sure that this budget works that keeps blowing up because of health care outcomes. I mean, we. At the end of the day, it's health care outcomes that are causing the budget to blow up. And they can be frustrated by that. And we can all. We can all admit that that's just a challenge. Right. And so with my own daughter's syrinx and her spinal cord, it's not going anywhere. It can get bigger. And if it gets bigger and blocks her cerebral fluid, she will need a neurosurgery. Does she need one right now? No. Does she need one in six months? We don't know. What an insurance carrier says is, you are high Risk they're underbiting you. She's got a diagnosis code that follows her. Our family has a diagnosis code that follows us and they cause my employer harm. I myself am the employer. My employees are on Ichra. We drink our champagne, we get to choose. I get to choose the plan every year with the dollars that this company is giving our employees. And I get to say who covers the highest possible surgery center in case she needs that someone are going to the best place. What is the cost? How much are the MRIs on this, on this program? What does it look like? Do they cover my pediatrician? Do I have to change neurosurgeons? I don't want to do that. So I want to make sure that each one of those things that matter to me and my family are something I can do. In addition to nicra, I could actually put her on her own plan that is very robust. You could do this with your autistic children and where you're paying up for them. But maybe, maybe individually I'm healthy and I really go to the doctor once a year. I don't want to pay for that 50 year old version of that same high premium product. Right. Because I'm not going to be accessing those. Right. I want to take those dollars and apply them towards the out of pocket for the child. You can pick various products inside this plan. You just use your bucket of dollars to buy the right thing for your family. Now a lot of times we'll help you with the math if you're going to meet out of pocket maximums. And it does make sense to put the whole family on the same plan, but sometimes not. Right. So when we start to get older, you know, I, I and my husband are 50 year olds. So when you start to get older, your healthcare is more expensive. So it drives up the cost. And that's the same reason why in an employer population, if a lot of the humans are 26 to 35, they're going to be priced lower. But if a handful of the humans are getting towards the mid-50s to early 60s, we're going to drive up the cost for everyone because we might have a heart attack. Right. So how does the mom.
• 15:46
  Speaker A: It's insane listening. Like again, I'm an entrepreneur, so there's a, there's, I obviously have a different like footing in this. Yeah, but the, but the moms and caregivers that are listening and they, and they work at companies and they hear this and they go, I want that, I want my HR to offer that. What can they do, because I, you know, I actually spoke at a, at a really a major bank a few years ago and they were saying that they realized they needed to do better in this capacity because what they were offering from the, honestly, the blanket offering was phenomenal. I said, you know, that most women and caregivers in my shoes would go, I mean, that's a one. I would want to work for a company like that because of what's happening. And in talking and having this, this keynote with them, they realize that, you know, the specifics of it are so unique. While the whole population isn't unique, my specific situation is unique. The other person says too, from what those therapies are. How does an employee who's hearing this go to their company, HR and benefit provider and say, this would be really helpful for my family because I want to stay working here. I want to, I want the benefits here. How does, how do we advocate for that?
• 16:49
  Speaker B: Yeah, I mean, employees, that's what I hope happens. I hope employees start to become educated and they start asking HR and CFOs for this for their families. Look, I want to be able to make the decision. I want to access that $36,000 you're paying and I want to pick the plan for me. And the more that us as employees use our voice, the more employers will do this. What I hear a lot at the objection table from brokers and employers is, wow, I don't think they can make this decision. It's really complex. They come into my office and complain every year about the three products we have. Well, yes, they complain because the three products do not fit their needs. Right, right.
• 17:23
  Speaker A: They need to have a greater selection.
• 17:25
  Speaker B: And you know, they have a hard time selecting which one between the three products again because the three products don't meet their needs. And they're trying to select between the three products that are with the same carrier. The same problem's going to exist if your, if your physicians aren't in that carrier's network. They're not in either one of those products. Those products are just ppo, high deductible hmo. They're just priced different. They have the same access to care challenges. So what I share with HR and with CFOs and with brokers, actually our employees are very intelligent. Only 13% of the people that have gone through our platform have needed to talk to a human to help them make their decision. They know what their access codes are, they know who their physicians are, they know what their healthcare outcomes are, and they know how to pick A plan that's going to cover those. They've become very smart in their healthcare outcomes. Right. So let's give them the credit where credit's due. Let's let technology help them evaluate because that those SBDs are very complicated. The tiers on drugs are very complicated. Let's have technology help them as well. Right. And show them five plans that are a really good alignment for those providers and then let them stack and pick based on the pricing or brand loyalty. Right.
• 18:33
  Speaker A: Of like coming into the office and saying like this, you know, they're complaining about the three choices and we're giving them options. And they're still, you know, that's the argument I hear.
• 18:41
  Speaker B: It's like you're giving them options.
• 18:43
  Speaker A: It's like one of the biggest, like overarching, like, like some themes that has risen in this, in my, in my world is like we have to believe people, we have to believe mothers and caregivers. Because if you, if you start with not being, not believing them for what they're up against, you are going to double down on never providing an option for the solution to the way. You're like, I hear that in this. It's like, thank you for providing that. None of those fit.
• 19:08
  Speaker B: Right? None of those fit. Thank you so much for the three choices with the same ingredients. Right.
• 19:13
  Speaker A: And it's like, I get that maybe for 90% of people here that works. And I am so thankful that you provide that. I'm just telling you right now, that doesn't work for my family.
• 19:22
  Speaker B: Right. And so I think also, yeah, companies that are moving to choice. Right. So really what we want to call this is I don't really like individual coverage, health reimbursement arrangements. It's really big acronym. It's really just means choice. You're using your benefit dollars for yourself and you get to make a choice. You know what's also great? Your employer gets to budget. Because when you do have high claims, it doesn't change you next year because ACA is 24 million people being actuarial risk together. There's a lot of healthy people in there. There's some unhealthy people in there, but. But 24 million is more than 1,000 on your employer plan. When it's 1,000 on your employer plan, your high claim ruins the employer. When there's only 102 high claims devastates the employer. Right?
• 20:02
  Speaker A: Yeah.
• 20:02
  Speaker B: So when it's 20 some million in ACA, and this is the, this is the reason the carriers want to be in this market, it's risk sharing. So if any one carrier gets more of the unhealthy members and another carrier gets more of the healthy members, they have to share a reconciliation check at the end. So it's very low risk for them. Right. And so that's all very complex. But what I'm saying is for the longest time there's been no competition. There've been the large regional players that win all of the employer share. They build their relationships with the agents and the employers and they're able to secure those groups. They also go in buying back and forth. They have a group for a couple years, the other person has to go and make more numbers. They come in and buy that group. So we shift carrier to carrier. Individuals can actually remain loyal to a carrier for years now. So carriers actually care about that. They're not putting people on, taking people off pre authing. Not pre authing. Getting all the history again. Right. So we're also taking the employer out of the. I really think taking the employer out of the healthcare business is what we need to do. Right? Well, it's our healthcare business.
• 21:03
  Speaker A: Ours. It's our, it's my healthcare is my business, like my health.
• 21:07
  Speaker B: Those are our comp dollars.
• 21:08
  Speaker A: Health and care. That's my business.
• 21:11
  Speaker B: If we get to it, that's our comp. Total cash compensation includes our benefit dollars.
• 21:15
  Speaker A: Oh absolutely.
• 21:16
  Speaker B: That's our compensation. We should have a voice like we have a voice now with our retirement and we can pick in our 401k plans because sometimes our employers had poor fiduciary and we lost our retirement after working with employees or employers for a long period of time. We had to trust them to make decisions for us, for our future. It's the same. It's just it took longer to get here for healthcare. It's only been around since 2020 so it's starting to take some traction. It's been an uphill battle. We're starting to see employers in that mid market sizes of 3,000, 5,000, 10,000, 15,000. Look at this. Which is fantastic because that's what we needed. We needed big brands behind this. We need big brands choosing. We need big brands giving choice. Right. And getting out of that. Having a whole benefits team analyze people's claims data. Right. We need to get out of that. Unless you use those dollars somewhere else.
• 22:02
  Speaker A: I mean it's, that's, I mean from a, from a economics like brain of mine as well, it comes down to like decentralized leadership. You know, you can be the CEO and you have a team below you but that team better know what the mission is and the mission has to come down to what. And I believe that like I am the leader of the mission of my family's health. And so to be believed in that for what is best for the overall mission of, you know, working towards the greater good and having purpose in life and working for a company like that is part of it. But there needs to be decentralized leadership and acceptance on those families and like giving them the choice.
• 22:40
  Speaker B: Yeah, I think this is, and I don't want people to know if, you know, if I have some type of healthcare diagnosis. I don't want people in my company to know that I want to face that battle and maybe share it if I want to. I think if someone is an executive at a company and seeking mental health, you know, services, they don't want their employer to know that maybe they do because maybe it's safe place to speak. But in a lot of employers it's not a safe space to speak. So let's be honest over here, we're not always a safe place in leadership in a lot of companies now. So we need people not to have that information. They need to not be armed with, you know, somebody seeking IVF therapy because they're going to be pregnant soon and they may not be up for a promotion.
• 23:18
  Speaker A: Correct.
• 23:18
  Speaker B: That information should not be in our employers hands. And I am really passionate about the ownership of our own data privacy.
• 23:25
  Speaker A: Yeah, I couldn't agree more. I think this is if there's one thing that you could share to help maybe ignite, you know, the women mothers, caregivers, parents that are in medically complex families to this can be a provider relief. It's going to take some sort of ignition energy for them to go and proactively talk to their hr, you know, branch and advocate for this. But what would be something that you could say to them like what's a phrase that you can share that then they can go to their company and say I, I heard about this, is this an option?
• 24:00
  Speaker B: Yeah, I would, I would say I have been reading about individual coverage HRAs and I would really like to make the decisions with my benefit dollars. I would like to choose the carrier and the therapies that are available to my family. Yes. And I think that that's how you go to hr. I think you also start to talk to your providers about the carriers who take care of them. Who has to wait 120 days to be paid a $20 reimbursement on a, on a code. Right. Who has to pay admins to collect who gets denied after they got a pre to fight with an admin on a call. Let's start to make it better by actually hearing about the people who have to provide the services who are out there trying to provide these therapies. Let's try to correct this from the inside out.
• 24:43
  Speaker A: Yes. Yeah. Yeah. This is, this is. This is great. Thank you very much for all this information. This is going to be, I really hope something that. Well, I know this to be true. There's a. There's a sense of hopelessness that can come with experiences like kind of motherhood. And we are all looking for ways to find like good use of our energies to help our children. And this really does lead. This feels like a very navig navigable journey to get to a place where like that does free up the energy to actually do the thing for my family and be supported in my company without making it a like a like you said friction.
• 25:25
  Speaker B: It's a little bit of friction right now to advocate for ourselves and when we get to actually make the decision the friction will be pulled off of hr.
• 25:32
  Speaker A: Exactly. It'll be pulled away. But ignition energy to any of this is always the hardest part. Like doing, doing the thing to advocate that will potentially have a more ease of access is difficult mentally for a lot of women and mothers. And at the end of the day I believe in how deeply you discuss this. It will serve as a reason why those choices that can be made within the parameters of your own family provided by your by your employee will be much more peaceful. And to know that it takes things off of the plate eventually is wins.
• 26:09
  Speaker B: Brandi and I think I'll just send one more thing. The customer satisfaction score of selecting a plan when you get choice is 96%. Customer satisfaction plan with employee benefits is less than 50 in the average employer. So we know that making the decision makes an impact and we've had tears, we've had crying. We've had a lot of really impactful stories where individuals on the phone with our enrollers like this is game changing for our family. Right. And just makes you worth it.
• 26:36
  Speaker A: Agency we want agency on our life. We want a huge part of our life to have to be heard in the process. We understand that we're just one little ant in the whole scheme of things and Yep. And that agency is our life and being able to con like conscious of those choices because then that you know, you tell a teenager I'm going to tell you something and I believe that you can make the best choice for yourself. When someone makes a choice for themselves, there's less of a outward anger towards the world. Like, well, I didn't want to do that in the beginning and now I'm getting this outcome. When you make a choice, you then pivot based on whatever the react, whatever the, whatever the equates to, to whatever you get from it, at least you made it yourself.
• 27:17
  Speaker B: Right. You have your own accountability. And so you take your employer, you. You're no longer a victim. You get to have those.
• 27:23
  Speaker A: No longer a victim. Nope. Nope. It's the people. You know, we all know there's people in the world that are blaming someone else for the thing that happened 50 years ago to them. And you're like, no, but that. It's, it's saying that and saying you have to take control. And when you are in control of those choices, it does feel like there's really, really positive momentum. And I, and I, I know you know firsthand that when I get to decide for my children on their course of care, it does end up being the best and the next right thing to do because I get the data from what I believe to be true of what their care looks like.
• 27:57
  Speaker B: Yes. Yes.
• 27:58
  Speaker A: Well, thank you so much. I think this is going to be so, so helpful for so many and I, and I really do. I'll put all of your Brandi's information and Benefit Bay about Benefit Bay in the episode description and Brandy, thank you for what you do. This is.
• 28:11
  Speaker B: Thank you so much, sir.
• 28:12
  Speaker A: Beyond special needs parenting, this is really for again everyone. Agency for their own health.
• 28:17
  Speaker B: Yep. Absolutely awesome. Thanks for having me, Sarah.
• 28:20
  Speaker A: Of course. Well, until next time on the Inchtones podcast.