Insurance, Families & Parity – Episode 31

During Mental Illness Awareness Week, guest host Hannah Wesolowski (NAMI’s Chief Advocacy Officer) talks to Richele Keas (NAMI’s senior media manager) about mental health parity. In this episode, Richele shares her story as a mom who’s personally wrestled with insurance companies to find care for a loved one living with mental illness, and she also discusses her recent trip to the White House to help advance parity.

You can find additional episodes of this NAMI podcast and others at nami.org/podcast.

Transcript

[0:00] [background music]

Richele Keas: [0:01] No matter how hard you fight or advocate for your child, sometimes there is no option. Your options are the door gets slammed in your face and you've got to work around the system or outside of the system, which some of us can do and some of us can't do.

Hannah Wesolowski: [0:20] Welcome to "Hope Starts With Us," a podcast by NAMI, the National Alliance on Mental Illness. I'm Hannah Wesolowski, NAMI's chief advocacy officer. Today, I'm serving as your guest host for a special episode about mental health parity happening appropriately during Mental Illness Awareness Week.

[0:37] We started this podcast because we believe that hope starts with us. Hope starts with us talking about mental health. Hope starts with us making information accessible. Hope starts with us providing resources and practical advice. Hope starts with us sharing our stories, and hope starts with us breaking the stigma.

[0:55] If you or a loved one is struggling with a mental health condition and have been looking for hope, we made this podcast for you. Hope starts with all of us. Hope is a collective. We hope that each episode with each conversation brings you into that collective to know you are not alone.

[1:13] Today, I'm joined by NAMI's Senior Media Manager Richele Keas. Richele is a senior manager of media relations at NAMI and works to position NAMI as a trusted go‑to resource for media requests related to mental health across a variety of topics and outlets. I get the incredible honor of working with Richele on a very frequent basis.

[1:32] She also works to increase public awareness of NAMI's resources, support groups, and helpline, but top‑tier and targeted outlets to reach new and diverse audiences. She has been with NAMI since 2018 and has more than a decade of healthcare communications and media relations experience.

[1:48] Before she joined NAMI, she had 12 years at FleishmanHillard, a global public relations firm on their healthcare communications team. She grew up in Connecticut and has a BA from George Washington University where she also earned an MA in art history, and after that, worked at the Smithsonian American Art Museum briefly, which is information I only know about today.

[2:07] Richele, you are an expert in your field, and you've been working with the media for more than a decade, but you're also a mom, and you have been very open about sharing your own journey within your family and navigating mental health.

[2:23] We're going to talk a bit about parity today, but we had a really exciting opportunity over the summer and I can't wait to talk about that. Can you share a little bit about what working at NAMI has meant to you in the last five years?

Richele: [2:37] Absolutely. For me, working at NAMI has brought together both my skillset and experience of working with media and raising awareness for nonprofits and organizations with a really genuine heartfelt and purposeful goal of raising awareness and helping to reduce stigma for other families like mine.

[3:05] It's incredibly difficult to break through and to find resources and to find help when you think you're the only one going through it, and by raising awareness and doing more interviews and just talking about mental health conditions openly.

[3:27] The younger generations are much more open to it. Unfortunately, they've been going through their own crisis, but it really has broken through in a way that I don't know we thought was possible five years ago.

[3:40] When I look back at where I started at NAMI and to where we are today, I'm so proud of all the work everyone has done to really increase our community, increase access to risk‑free resources, and trying to help as many people as possible so that they don't feel alone and they don't have to recreate the journey.

[4:05] The most important thing that I've learned working at NAMI is the wisdom of lived experience. Personally, I'm the mom of a daughter with bipolar. It's amazing to hear from others and to see what's worked for them and the difficulties that they've had because it's across the board. It's not unique to one family or one individual.

[4:35] Unfortunately, it's difficult, but it's getting better and all the work we've done. You mentioned the moment at the White House over the summer with parity is anything we can do to raise awareness, increase access to services through parity, and decrease stigma.

[4:56] I feel anything that I can do in my role at NAMI to move those goals forward not only helps my daughter but anybody else's daughter, child, or person they love, who's in that situation.

Hannah: [5:10] We just kicked off Mental Illness Awareness Week. We're in the middle of it now, and this is no better time to talk about an important issue like parity than right now. This is an exciting month for parity.

[5:29] We are celebrating the 15th anniversary of the Mental Health Parity and Addiction Equity Act, which was passed in 2008 and was a landmark bill for NAMI advocates. Parity is an issue that we have fought for since we started in 1979.

[5:50] That bill in 2008 brought us closer to ending the discrimination that people with mental illness and addiction face when they're trying to get care and support. For those who aren't familiar with the term parity, it might be helpful to take a step back and explain it a little bit.

[6:06] Mental health parity is the essential idea that mental health and addiction should be covered at the same level of care as other health conditions. In all insurance plans, that mental healthcare is no different than physical healthcare and should be covered the same.

[6:20] An example, when we have mental health parity, it means that our insurance can't put limits on care for mental health that are different than limits they might have for physical health. That could include limits on the number of visits that somebody can take to a doctor or having a higher copay for mental health visits than you might have for physical healthcare visits.

[6:40] Another example is that an insurance plan has to have enough in‑network providers. We often don't see that in mental healthcare the same way we see it for orthopedists or other healthcare specialists. Having in‑network providers that are sufficient to meet the need is another example of parity.

[7:02] Parity is important because when we don't fund health above the neck in the same way that we fund it below the neck, people lose out on critical life‑saving care. Unfortunately, many people with mental illness are still denied access to life‑saving mental healthcare.

[7:15] The true promise of parity, even 15 years later, hasn't fully been achieved. That brings us to the exciting developments over the summer. The Biden Administration put out some new rules to make parity a lot stronger.

[7:31] The laws that have been in effect for 15 years are giving federal government more ability to enforce them, to make sure we all see parity in our experience.

[7:43] You had a chance to step out from your role at NAMI, which is typically behind the scenes, you're prepping people like me and other colleagues to talk with the media, and you introduced the president of the United States to talk about this issue. What you did was you shared your own family's experience.

[8:00] Can you tell us a little bit about what you talked about at the White House, in terms of trying to find care for your family and what you went through?

Richele: [8:09] It was an amazing experience. It all happened very quickly.

Hannah: [8:14] Very quickly, if I remember correctly. [laughs]

Richele: [8:16] I found out on a Friday and we did the event on a Tuesday. It just so happened that the experience that I had had trying to find an in‑network specialist for my daughter aligned with the changes that President Biden was doing to make mental health parity a reality for so many families, including my own.

[8:39] I was honored to be able to go and represent NAMI, represent all families. So grateful for the opportunity to have a situation where we have an administration that actually takes mental health seriously and as a priority for the country.

[8:58] It was an incredibly purposeful moment and something that I'll never forget. Incredibly stunning to be in front of the cameras and not behind them.

Hannah: [9:11] You did great. [laughs]

Richele: [9:13] You never know where you're going to end up, so you got to be open to yes.

Hannah: [9:17] As somebody who had the great fortune of being there, it was an incredible experience. To see the way that the president was touched by your story and so many folks in the room was so powerful.

[9:31] Your story, unfortunately, is the experience of a lot of families. You tried to get specialized care for your kid and you couldn't find it in your insurance network. Can you tell us a little bit about what you went through?

Richele: [9:43] Absolutely. Luckily, we had really good insurance. We had mental healthcare covered by our insurance. My daughter had a situation where she was inpatient for a while. We did some extensive outpatient treatment for months for her...

[9:59] [crosstalk]

Hannah: [9:59] That was all covered?

Richele: [10:01] All covered. Exactly. No questions. Everything was great. Then, when we moved out of the system and we had to find a therapist for her to do the follow‑up care and that continuum of care that we're all trying to coordinate on our own because we don't have a coordinated system, unfortunately.

[10:18] We found a wonderful, amazing therapist who had the exact experience we needed and specialization. She was out of network, of course. She was extremely expensive. I had searched high and low. I spent hours on the phone trying to coordinate and do pre‑interviews with tons of in‑network people, and I couldn't find anyone.

[10:43] We had the good fortune of having an incredibly empathetic and compassionate therapist who knew our situation and offered to join our insurance network just to provide my daughter with care.

Hannah: [10:57] That's incredible.

Richele: [10:58] It never happens. She was willing to take a decreased payment because she was going to go in‑network for us. I was thrilled. I was like, "All I have to do is get insurance to say, 'Yes.' This shouldn't be a problem."

[11:13] I checked in with insurance. I filled out all the right forms. I double‑checked everything. I waited. I got the first response. Denied. It was crushing, because I thought I had found a ray of light in this darkness. I appealed it because I wasn't going to give up.

[11:36] I went back to them, I filled out more paperwork. I got more letters of how this was helping her and she was making progress. We waited to see what our second appeal resulted in, and we got denied again.

Hannah: [11:51] Did they say why they wouldn't accept it? What did you have to do to prove that this was what your family needed?

Richele: [11:58] They said there were plenty of in‑network providers that we could go to. That in order to get approval for this one therapist who had the right expertise, I had to coordinate my daughter going to two to three other therapists in‑network and providing documentation of why they weren't a good fit for them to even consider it.

[12:24] The thought of putting her through that or having her lose all of the progress that she had made was more than I could bear or put her through. Luckily, we were able to pull together resources and pay out of pocket. It was extraordinarily hard. We made a lot of sacrifices, but it was the right thing.

[12:50] There are so many families who go through the same experience, and they pay their insurance premiums monthly, and they can't get access to care, and they can't pay out of pocket. It results in tragedy.

Hannah: [13:07] It's something we don't see for other healthcare conditions. Your kid needs a specialist for something, you usually can get that.

Richele: [13:14] Absolutely.

Hannah: [13:15] People want their kids to get care and it's usually not a problem to get that right specialist that you need, but not the same in mental healthcare.

Richele: [13:23] Somehow. I relate it to cancer. Could you imagine, your kid had treatable cancer. You found an amazing specialist with the right cure, but you were denied access to them and told that she had to go through two other treatments first and they had to fail before she could have access to the treatment that you already knew was going to work.

[13:48] During that time, not only would they fail, but she would get worse. The valuable part of being at the White House and being able to talk about my story is that we don't talk about our failures as a community.

[14:08] I had never told that story openly before, even to others. I'm not going to say, "I tried twice, I appealed, and I failed." So many other families go through that. My story was a story of far too many people.

[14:24] You only have so much in you to appeal and appeal, and that's what the insurance companies rely on, that there's no clear path forward to get your child the care they need outside of the narrow parameters that the insurance company has decided.

[14:43] The quality of care seems to be not as specific as it is for other mental health specialties. A therapist or a social worker are interchangeable, and someone who has a unique situation doesn't necessarily require a unique specialist, unfortunately.

Hannah: [15:06] You're somebody who has worked in the healthcare space for a long time. To think it's hard for somebody like you or me to navigate that, that's what I hear from so many NAMI families is, "What do I do when I'm denied?"

[15:21] You have to keep fighting, and you're not always successful. That's why we need to change things.

Richele: [15:26] Absolutely. I have been told that they will automatically deny you three times before they will even move you forward. That's why I kept going.

[15:39] When I hit the second roadblock of having to take her out of the care that was helping her to prove a negative, it would be so detrimental to her health, which is the opposite of what I'm paying for for insurance.

[15:58] Considering everything that we went through with insurance and the multiple appeals and denials and how crushing that was, within our family, we knew the right thing to do was for her to get help from our specialized therapist.

[16:13] We did everything we could to pull together our resources and manage to cover the costs. The idea of my daughter losing the progress that she had made was something that we weren't willing to risk. Fortunately, we had the ability to cover the costs, even though it was hard.

[16:36] Over the five years that my daughter saw this amazing therapist, she saved her life multiple times. My daughter is thriving now. She's doing amazing. She has a life that is productive. She's in school, and she's working.

[16:58] I know that without the specialized care, I'm not sure we would be where we are today and that so many families aren't as fortunate as ours. The result is tragedy.

Hannah: [17:14] Every family should have the chance for getting that help and getting the support and care that they need.

Richele: [17:21] Absolutely. The fact that no matter how hard you fight or advocate for your child, sometimes there is no option. Your options are the door gets slammed in your face and you've got to work around the system or outside of the system, which some of us can do and some of us can't do.

[17:45] The therapist saved her life multiple times because they had such a safe and open space for my daughter to be able to confide and know that she wasn't going to be judged and that she could share what was going on. We were able to get her help early before a crisis hit.

[18:06] If she had certain things happening or she was headed in a certain direction, we were able to head them off and provide support in a way that we could alleviate having to wait, which many families do, they have to wait till there's a crisis before they can get help.

[18:25] The value in the parity rules and reinforcing the need for people to have access to the right care is all about getting care early and not having someone to experience crisis. It would be like saying someone has to have a heart attack before they can see a cardiologist. We wouldn't do that.

Hannah: [18:46] That's not what we want for anyone, and we shouldn't want that for anyone. Fortunately, what the Biden Administration has proposed could help a lot. Let's talk about the rules a little bit that you were at the White House with the president to announce and kick off a little.

[19:07] In July, three different federal agencies, the Department of Health and Human Services, Department of Labor, and Department of Treasury, proposed some new regulations to increase enforcement of the existing federal parity law.

[19:20] The law that's already on the books but doesn't have a lot of teeth and so hasn't changed everything that we need to change to get people access to mental healthcare. It's pretty technical. It's 118 pages of new rules and regulations.

[19:35] Essentially, what it would do would address health insurers' use of limits that place more restrictions on mental health and substance use insurance benefits compared to how they treat other medical benefits.

[19:46] The goal here is to limit how insurers use these limits on mental health and substance use treatment, hoping that these changes will ensure greater coverage of mental healthcare for the millions of people across the country that need that support.

[19:59] Richele, I'd love to hear from you and your experience that day, and what you know about these rules, and what we're advocating for here at NAMI. What impact do you think this will have? Why do you think it's so important? Why is it so important now?

Richele: [20:16] Today, more than ever, everyone is affected by mental illness, whether it's someone in your family, it's someone you know, it's a friend. We all have loved ones who, to some degree or another, have been impacted with changes that we've all experienced over the last three years.

[20:35] We're all trying to navigate a system that wasn't created to provide care in a holistic way the same as we have for other aspects of care. You go to your primary care provider, you go to a specialist if you break your leg, that kind of thing.

[21:01] We go in, you've got something going on that you're dealing with, you might need help with a therapist, you've got to find a therapist on your own. Then, you have to go through multiple therapists to find the right person. You're left to your own devices.

[21:17] Even with insurance, going through your in‑network provider list and making phone calls and realizing that there's no one listed at that number anymore or there are what we call ghost networks, how many calls are you going to make where the doctor has retired or...?

Hannah: [21:39] Not taking new patients.

Richele: [21:40] not taking new patients? Exactly. Or, at this point, the waitlist is astronomical. There's a six‑month waitlist for pediatric psychiatrists and therapists, where they're not even taking names anymore because they don't want to provide false hope that people are actually going to get an appointment. We have a lack of providers.

[22:04] To have insurance without verified providers in their networks is this additional obstacle, given all the other obstacles and barriers that we're faced with in a situation that is incredibly difficult on so many levels.

[22:24] We have a loved one. We may not understand what they're going through. We may have difficulty connecting with them, but we're doing our best. The new laws and the parity to improve access hopefully will make one of those steps a little easier in order to move forward and start the process of their journey of recovery.

[22:49] Or, moving forward in a way where we don't always know the right thing to do but if we can at least find them the person who does, that can take a weight off your shoulders, as a parent or a loved one, that is unspeakable. To know that I can't help her, but I can find someone who can, it's so valuable.

[23:19] It helps me to move on to the next thing that I need to take care of. It's such a continuum of care and there's so many different components that you've got to keep an eye on. I don't think that we talk enough about all the different aspects that people are dealing with related to mental health conditions and mental illness.

[23:44] Incredibly valuable that we're starting to scratch the surface and break down the stigma that you can't have health without mental health. For all of us to understand that you can't separate the two.

[24:03] When we try to do that in a system, it creates a dysfunction of where you can have physical maladies that are related to your mental health condition and vice versa. By separating those, we're creating a situation that has barriers that aren't necessary.

[24:29] One of the wonderful things that we've experienced recently and with the Biden Administration, in addition to their work on parity, is to have a new surgeon general who has made it his mission to focus on mental health and so many different aspects.

[24:46] The mental health crisis with the youth, mental health in the workplace guidelines. To have, at such a high level, the awareness and the value placed on trying to tackle these issues and getting people health before they're in crisis so that we can not only help individuals, but not overtax our system.

[25:12] Not put people in systems where they're at a breaking point and they find themselves not in the healthcare system, but possibly in the justice system. There's no reason for that.

Hannah: [25:25] There isn't. We focus so much on when people get to the point of crisis, but we need to help people way before they get to that point. We can't leave people to the justice system. That's not where they're going to get care and nor should they be caught up in the criminal justice system.

[25:43] There's so much work that we have to do to improve things, but this is a huge step forward.

Richele: [25:48] Absolutely. One of the most valuable things that NAMI does, and that I've seen over the years, and that we've developed is we've focused on helping people get help early and trying to provide guidelines, and warning signs, and symptoms, and support groups for not only people who are living with conditions, but also their family members.

[26:11] To educate people on how they can provide support, and empathy, and compassion without having trying to fix anything. Just being there for your loved one and listening has so much value. Instead of feeling isolated and like they're alone, that they actually have support and that they're not a bad person because they have an illness.

[26:39] It's the only health condition that somehow has been turned on its ear and not seen as an actual imbalance of our physical being and somehow is a moral failing to a lot of people.

Hannah: [27:01] Thankfully, that conversation is starting to change. We see this with federal agencies putting out new rules. We see it with Congress, where there's so much bipartisan support to do something about mental health.

[27:11] Unfortunately, we had to get to a point of being in a crisis in this country and at the brink of a total mental health emergency. We are starting to see that tide change, and hopefully, these new rules help move us in the right direction.

[27:32] I would be remiss if I didn't thank you for sharing your story, because part of offering that support and building that community is hearing about other people's experiences.

[27:39] Thank you to you and to your daughter for sharing that story and for sharing what you've been through in hopes of helping others and certainly setting such a powerful message at the White House, which is incredible.

[27:55] I encourage folks to go to NAMI's website. There's a amazing shot of Richele with the President and Senator Debbie Stabenow. It's incredible. What a moment for all of us at NAMI.

Richele: [28:08] It was a surreal moment. We walked into the East Room to do the presentation, and "Hail to the Chief" was playing in the background. It was quite an amazing moment.

[28:20] I want to say I'm so grateful that we have President Biden as a champion for mental health for all Americans. That he's made this a priority and he understands the importance of leading with empathy and compassion in a way that we haven't seen in such a long time.

[28:44] It makes such difference to so many people. I really think that it's going to save lives, absolutely.

Hannah: [28:52] Absolutely.

Richele: [28:53] If there's just one thing I could say is that NAMI's ability to be nimble, to grow, to expand our resources, outreach, and to meet as many people as possible where they are, and being more inclusive to diverse populations and communities where there is a desert for psychiatric providers or therapists.

[29:25] To know that there are support groups available in local communities, I'm so proud to be part of an organization that is trying to make a difference in people's lives in a real way. As a parent, I know my daughter has benefited from me learning so much about lived experience and the wisdom of other people who've walked this path before me.

[29:54] Understanding that we don't have to have the answers. If we can just be there for them with non‑judgmental, unconditional love and hold on to the hope and light that will get us through the darkness, better times are ahead.

[30:17] My daughter is thriving now. She's doing great. I love her. I'm so proud of her. She's the strongest, bravest person I know.

[30:29] [crosstalk]

Hannah: [30:29] She's quite an advocate in her corner, too. [laughs]

Richele: [30:32] Yes, and I'm grateful for every day that she's here and we get to connect. She's taught me a lot. She's taught me a lot. I appreciate my time at NAMI and I appreciate being able to work for an organization that combines both my skill set and my purpose to fulfill me in a way that I feel like I can help others.

Hannah: [30:58] We're lucky we get to do that and bringing our work to our passion. Parity is an important issue and it's something where we all can get involved. I want to make sure folks know how they can share their parity stories and advance these new parity rules.

[31:18] First and foremost, these rules that we've been talking about that the administration has proposed, you have until October 17th to tell the Biden Administration, "Make these proposals permanent." Help reinforce the parity law and make sure that we all get better access to mental healthcare.

[31:37] You can go to nami.org\takeaction and click on Act. When you do that, it's the first thing you'll see, and you can add your voice to the more than 4,000 people who have already joined us in telling federal agencies, "Make these permanent. We need parity in our mental healthcare."

[31:54] You can also go to nami.org\parity to learn more about what parity is and what it is, and how we've gotten to where we are today and the fight that NAMI advocates have led for many decades now. Finally, tell us your story. Your stories power our advocacy. You can email us at mhpolicy, mh, like mental health policy, @nami.org to tell us about your parity experience.

[32:20] We encourage you to go to nami.org to sign up for our news alerts and follow NAMI on social media, including our advocacy handle on X, formerly Twitter, @namiadvocacy. You can learn about new opportunities to advocate when you sign up there.

[32:35] Together with united voices urging our leaders to do better, we can improve access to mental healthcare in this country.

[32:40] [background music]

Hannah: [32:44] The world can be a difficult place and sometimes it can be hard to hold on to hope. That's why each episode, we dedicate the last couple minutes of our podcast to a special segment called Hold On to Hope. Richele, can you tell us what helps you hold on to hope?

Richele: [32:58] The one constant anchor that I've found over the years is that I'm grateful for every day that I have with my daughter, whether it's a text, an emoji, a FaceTime, or just a call. Any of that connection fuels me and gives me hope to know that we can get through whatever the next hurdle is, but in this moment, we're good.

[33:28] To be present in that moment and appreciate it in a way that is sometimes difficult because we have so many things going on in our lives. It's taught me to slow down and pause and be present for those moments and be grateful for them in a way that I truly didn't understand previously.

Hannah: [33:53] That's beautiful.

Richele: [33:58] It's provided us with a way to pull through some difficult times, because we have a level of trust, but she knows I'm there to help her in ways that she needs help, not in ways that I want to help, and also advocate for her when she most needs it, and understand that it's not about what I think is right or wrong.

[34:26] It's about meeting her where she is and trying to find a way to listen with an open heart and be able to tell her that, "Maybe you need to go in and get a checkup, or go to the crisis center and let them evaluate you. Maybe you need to go in, maybe you need to get more help, maybe you don't."

[34:48] By giving her that feedback, and I use that very judiciously so that when I do say something along those lines, she's able to hear me and she does go in. She's been able to avoid some crisis because I've been able to provide her with a safe space to share things that I haven't judged her for.

[35:14] I know that's hard, and it's taken a long time, and nobody's perfect. I'm not perfect. We all make mistakes. To understand that dealing with a mental health condition or a mental illness, mistakes are part of the journey.

[35:33] You can't get to recovery without not only making mistakes, but learning from your mistakes, and turning your suffering into compassion and empathy, and using the wisdom that you learned from your last wound and using that to guide you when you go through the next barrier or obstacle in a way that it's smoother.

[36:01] I have to be open‑minded and not look at the experience through a lens that's very narrow, because mental illness and mental health conditions affect everyone differently.

Hannah: [36:14] No one's experience is alike.

Richele: [36:15] No, and someone may experience depression as tiredness and someone else may experience depression as anger.

[36:24] To understand that you can get to a point where you understand the symptoms and the specifics of your loved one through NAMI has Family‑To‑Family and we have other resources that can help you understand these nuances, is what I found to be incredibly useful and helpful in helping my daughter in ways that I had no idea even existed.

Hannah: [36:50] That's powerful.

Richele: [36:54] Every day is a gift, and I'm so grateful. I'm grateful for working at NAMI. I'm grateful for my daughter. We all have a role to play and we all have value.

[37:06] To help people find their purpose and their value regardless of their situation is a really important thing and something that NAMI provides to a lot of families and a lot of people across the United States or across the nation.

[37:21] [background music]

Hannah: [37:22] Thank you for leaving us on that note and telling us about your journey, because it is a journey and so important that people hear that, too. This has been Hope Starts With Us, a podcast by NAMI, the National Alliance on Mental Illness.

[37:35] To learn more about how to advocate with NAMI on important topics like mental health parity, visit our website at nami.org\advocacy. If you are looking for mental health resources, you are not alone.

[37:47] To connect with the NAMI helpline and find local resources, visit nami.org/help, text HELPLINE to 62640 or dial 800‑950‑NAMI. That's 800‑950‑6264. Or, if you're experiencing an immediate suicide, substance use, or mental health crisis, please call or text 988, the National Suicide & Crisis Lifeline, to speak with a trained support specialist or visit 988lifeline.org.

[38:18] Thank you for listening, and be well.

Transcription by CastingWords