When a child is seriously ill or injured, the entire family is affected. While the child requires medical attention and effective treatments, their family also needs to be supported with compassion and care. Families can find this support at Ronald McDonald House Charities (RMHC), which works to ease the burdens of everyday life so families can focus on being with their children.
To expand the resources available to families, RMHC of the Intermountain Area has created a new family support program funded by the Cambia Health Foundation. This pioneering program includes a full-time staff person and provides crisis intervention, mental health support, grief and bereavement support, and collaborative case management to help address social determinants of health. This can include helping families at home after their stay by connecting them to community resources for job placement, food security, school, support groups and other services.
RMHC is a longtime community partner of Cambia Health Foundation, the philanthropic arm of Cambia Health Solutions. The new family support program aligns with the Foundation’s new strategic vision to advance equity through whole-person health in underserved communities. With this renewed focus on behavioral health and belief in building a just and inclusive health care system for all, the Foundation is amid a multi-year, $11.5 million community initiative to increase access, improve quality of care and reduce the stigma of mental health.
This episode of HealthChangers highlights the innovative family support program founded at RMHC Intermountain Area. Carrie Romano, CEO of RMHC Intermountain Area, and Maria Gamvroulas, Family Support Services Manager, talk with Jim Swayze, president of Regence BlueCross BlueShield of Utah, about the work of RMHC and the support of families. The episode concludes with reflections from Peggy Maguire, president of the Cambia Health Foundation.
Jim Swayze (JS): And a big welcome to you, Carrie and Maria. It is so great to have you here with us today. Carrie, can you get things started for us today by telling us about the Ronald McDonald House Charities of the Intermountain Area and what the organization does?
Carrie Romano (CR): Absolutely, Jim. Thank you for the opportunity. Ronald McDonald House Charities of the Intermountain Area is an autonomous 501(c)(3) charitable organization. We're a mission-based business and our mission is to surround pediatric patient families with the support that they need to be near and to care for their seriously ill and injured children. We offer folks a soft-landing spot and lots of compassionate care when they're going through unimaginable circumstances and have a child that is seriously ill or injured that requires medical care.
JS: Carrie, could you talk a little bit about the timeline of support at the Ronald McDonald House? Where do the children mostly come from? How long do they stay? Can you give us just a little bit of an overview of that?
CR: Absolutely. Ronald McDonald House Charities of the Intermountain Area serves families who have a child 21 and under that is seriously ill or injured and requires some kind of medical care, usually medical care in a hospital and often medical care that's far from home. We tend to serve a group of high acuity patient families. Families that have a newborn baby or a child 21 and under, regardless of income, that needs some kind of medical care that is not available in their local hospital or local town so they must travel to access that care.
We tend to serve many families, from rural communities, tribal communities, and other outlying areas, who are traveling to access that care. The average length of stay is about two weeks for us. We have a group of families, roughly a third of our families, stay with us for many months. And some families may stay with us up to a year.
If it's a solid organ transplant or cancer treatments, they may be with us for a very long period of time. As opposed to a bone marrow transplant and then staying after the transplant, while the child is on the anti-rejection protocols. They need to be near the treatment center, but the child may be with mom and dad here at our Ronald McDonald House rather than inpatient. We serve families that come from a wonderfully diverse group of backgrounds and circumstances. They all share in this one heartbreaking circumstance of having a seriously ill or injured child.
Maria Gamvroulas (MG): I think another consideration is that we have families that come back very often. If they have a child who has a chronic illness that has to have constant medical attention or an injury, they have to have surgeries, or they've outgrown their prosthetic and they have to have a new prosthetic. There are some families that literally for years and years will come back and forth to the Ronald McDonald House. They might come and stay one time for a month for surgery. Then they may be back in three months for post-surgery check-ins. If it's a genetic illness, they're going to be followed probably lifelong so, while they're in the health care system, they're going to need to be coming back and forth. We definitely have that group of people who are often coming back to us.
JS: I've always been a big supporter and I'm also so impressed by how much is done at the House to support families while their children receive care at our great local hospitals that we have here in Utah. Let's talk about a newer program, the Family Support Services program. Can you tell us how that got started?
CR: You bet. Salt Lake City has become a regional hub for specialty neonatal and pediatric care. We are drawing families to our community from a broad geographic area, seven or nine states, in fact. They're coming to our community because we're fortunate to have world-class, often life-saving specialty care available to them. Often, they are traveling from rural communities. And as you well know, folks who live in rural communities often have challenges accessing needed medical care.
Our model is about helping to increase access to needed care for folks often coming from outlying rural communities, tribal communities, and surrounding states because they have a child that cannot be treated in their local or regional hospitals. In that, as you can imagine, folks are often in crisis because they have a child that is sick or injured enough that they cannot be treated at home. They have left their own home neighbors, church, backyard, and support systems, and they're navigating their way through a complex and challenging medical system.
We have wanted not only to serve more families but to serve families better. I think the need for skilled behavioral health support is evident for all of us. It has certainly been evident for our organization over many years.
So, the need to support folks with skilled behavioral health support has been growing over many years as we have witnessed people who are in crisis and without their support systems and who have very sick or injured children. We have wanted not only to serve more families but to serve families better. I think the need for skilled behavioral health support is evident for all of us. It has certainly been evident for our organization over many years.
We want to help address some of the social determinants of health and to increase access to health care.
We want to help address some of the social determinants of health and to increase access to health care. I think there's a mental health crisis in our community and our country. Families that have children with high-acuity circumstances, I think could greatly benefit from this type of skilled behavioral health support or connecting folks with resources locally or back home. If for example, you're traveling out of state for care for your child and then you are going back home with a new normal, with a child that may need a ramp to get into the house or a child that has complex equipment, you're going to need support and help navigating and integrating back home in a way that's going to stabilize the family and support the child to heal.
JS: Carrie, I remember the specific moment where I feel like this whole thing caught fire. We were at the board strategic planning meeting as you well remember. The one thing I really love about the Ronald McDonald House is it has such a big heart, but it's also run so tightly and so well. I remember during our board strategic planning meeting that this came up as a topic. I remember it being like a lightning bolt moment. I think you and I kind of caught each other's eye in the meeting. I looked at it and said, “We can solve this. We have the talent and the people and the passion to get this done.” I think that right after that is when this all got going. Shortly after that, we saw some effects that we'll talk about a little bit later in the discussion today.
CR: I so appreciate that you recognize this as a need and as an alignment for Cambia in terms of your values and what matters most to you. We were watching as our length of stay has increased over a period of years. We tend to be serving higher and higher acuity patient families. They're coming with more complex circumstances and situations and with that comes a growing stress. And so, the need to support people with skilled behavioral health, grief support, skilled grief support as folks navigate the unimaginable...
Of course, most people that we serve go home and they're over the moon excited because their child has been healed and they have been fortunate to access really exceptional medical care for their child. And some folks don't go home with their child. Their child passes away. Within our local Ronald McDonald House, we have children who may pass away every month or every week. Those families are grieving openly. We've always been good around Ronald McDonald House Charities at princess parties and superhero parties and all the fun, but we have not ever had skilled behavioral health support on-site and as part of our team. This is absolutely transformational for us, and we're so excited about it.
JS: That's great. Thank you, Carrie. We can't have a conversation without bringing the pandemic into things. And the pandemic has obviously had tremendous impacts on all of us in the state, in the country, and in the world, but I'd like you to talk about the effect the pandemic has had on the Ronald McDonald House.
CR: Yes. The idea of building out the qualitative family support we can offer for the pediatric patient families we serve has been brewing for a while, as you have said. The pandemic simply exaggerated and exacerbated what we have been experiencing and witnessing, which is this mental health crisis, and the need to connect families that have very, very high acuity children with really meaningful resources. Because having a very high acuity child or a child going through a solid organ transplant or cancer treatment can bankrupt a family. It can ruin a family.
We know there is unbelievable stress within households and families when they have a seriously ill or injured child. When you compound that experience with what we all experienced, which was COVID, the need for this position was so evident and obvious to us, and quite honestly, the value of what we could offer families and how we could connect them in meaningful ways to resources became all the more evident.
COVID for us simply helped to amplify what we already knew, which is if we can wrap family-centered care and qualitative support around families, we can improve outcomes and we can help kids heal.
So, COVID for us simply helped to amplify what we already knew, which is if we can wrap family-centered care and qualitative support around families, we can improve outcomes and we can help kids heal. It stands to reason that if their parents have basic needs met, economic stability, shelter, food, transportation and access, they're much better able to help their child heal, which is what we're all about.
We had several families prior to COVID that were staying with us that had become homeless as they navigated their child's experience in the medical system. We were faced with helping them navigate a way forward, a way to get into other temporary shelter or long-term transitional housing or establish an economic plan moving forward. We've helped lots of folks with the first month's rent and so forth. All of that was really amplified during COVID.
JS: Carrie, in 2020, during the pandemic, you talked to the Cambia Health Foundation. They really saw the brilliance and the need of this program, and they helped solve those needs by funding a pilot program. Can you talk about how it was established and how it helped families during the first year of this pilot?
What we found in that first year was that the program itself was transformative and that we were able to provide truly meaningful support for families during that year.
CR: We were so excited to earn support from Cambia to fund the first-year pilot program because the need had become so evident with the introduction of COVID in our communities. What we found in that first year, Jim, was that the program itself was transformative and that we were able to provide truly meaningful support for families during that year. This was a high-demand position. During COVID, we were serving a much higher acuity group of patient families and a subset of families that were traveling further distances to access that care. With that, we were able to create, I think, an immediate impact.
I believe this is going to be a long-term transformational impact because what this position has been able to do is to offer folks emotional support and tangible resources that relieve some of the economic stressors that I think probably disproportionately impacted rural communities in this country which happens to be where we serve lots of families in rural communities. And the physical and emotional stresses that we witnessed during that first year of the pilot program, this position was able to directly impact.
The first day on the job, this position was companioning the bereaved and offering really skilled grief support to a family.
And, in fact, I remember the first day when this pilot program was initiated, the first day that we hired a licensed certified social worker (LCSW), we had a family that had a child pass away. So, the first day on the job, this position was companioning the bereaved, was offering really skilled grief support to a family that day, the first day on the job. I remember thinking, “I'm glad that Cambia took a chance on us and supported this pilot.” It proved to us very quickly that there was value in this and that the value could be meaningful and lasting.
JS: Carrie, let's stay with this for another moment. I mean, based upon the tremendous success of that pilot program, the Cambia Health Foundation, they were very generous in extending the support of this program. Can you talk about the funding and how that helped families at the Ronald McDonald House? Can you talk about how that helps not just now but into the future?
CR: Absolutely. After we completed the pilot project in the first year and the need and the remarkable impact was evident, we then came back with an invitation to the Cambia Health Foundation to consider permanently endowing a family support specialist position. We made a few minor tweaks based on our learnings during the first year and made our best case to the Cambia Health Foundation. Fortunately, the Cambia Health Foundation cares about creating long-term impact. They're a transformative leader in the philanthropic world. Lucky for us, they said yes to funding this permanently endowed family support specialist position here at our Ronald McDonald House to offer skilled mental health support in terms of the immediate here and now crisis. Crisis de-escalation and kind of skilled behavioral health support in the moment that folks are in, then connecting them with resources in the community, both locally or back home, and grief support.
We were able to permanently endow this position, and it's remarkable, Jim, because this is a program and a gift that will go on forever and will support pediatric patient families for generations to come. I think it will have a really meaningful, long-range impact potentially on these social determinants of health and the disparities there are out there in health care, particularly, for rural communities. We're over the moon and thrilled about this.
JS: Carrie, it feels great to be part of something like this with the generous donation of Cambia Health Foundation to create, as you said, an ongoing, lasting legacy to serve people like they've never been served before for their mental health needs. I think it's really exciting.
JS: Maria, let's bring you into the conversation. As a licensed clinical social worker (LCSW) who provides mental health care and support services, you have such a key role in better serving families during their stay. I mean, in some ways, you're kind of the heart and soul of this and have the direct impact with families. Can you give us an overview of how you support the families?
I think in this role a big component of it is recognizing and acknowledging for these families that, yes, you really are in a stressful situation—giving it a voice.
MG: Sure. Thanks, Jim. I think it's all of the things that Carrie has talked about. It's recognizing that families are in tremendous stress when they have a sick or an injured child. And I think, let's be honest, everybody's got stress every day in their life. Then you throw in the bailiwick of that, a sick child or a child that went through a trauma, and now you're whisked away from your home and you don't have your support systems. I think in this role a big component of it is recognizing and acknowledging for these families that, yes, you really are in a stressful situation—giving it a voice. Yes, you have a reason to be upset. This is legitimate. This is unsettling and disturbing to your family ecosystem.
And then I think just being there with families. As the mission of the house is to embrace the families with support and with resources that they need, working with families and letting them know at an individual level and as a part of a larger population of people that are experiencing similar situations is you, it gives a lot of meaningfulness to families to feel like we're somewhere where they understand what we're going through and they're there to help us problem solve. They're going to help us kind of bring down the worries of the things that we have to address because we have a place to come home to when we can't stay at the hospital. They help us with... I think some of the things I've done is help families with some creative problem solving and how to stay in touch with your family at home.
And then again, resources. What are their needs? And I think that the grief and the bereavement part, a big piece of that is not that it's just when families lose a child physically to death, but when children are born with a congenital defect or a problem that's going to be lifelong, or they sustain an injury that's going to have an impact and change their life forever, there's a grieving component. There's a loss here for us. There's a real loss for us. How do we kind of step forward and march into a life knowing that it's not going to be the fullest life that we had dreams about? I think there's a lot to be had for the families in being able to have that connection with family support services.
JS: Wow, Maria. I mean, just hearing you talk, it is just so powerful the difference this is making in people's lives. You're making such a big difference. Could you really make this real for us by taking a few minutes and tell us a story about a family that stands out in your mind with the program's impact and your work with them?
MG: One of the families that comes to mind had a child born with a birth defect. It's a hypoplastic left heart. Essentially, what that means it's incompatible with life unless the child is able to, over a period of time and through a series of surgeries, is able to get to a point that they can have a heart transplant. So, this family had this. This was their first child. You can imagine the excitement and then all of a sudden the crash in, oh, what was supposed to be the most exciting time of our life has now become a traumatic event. Finding out that our child is in a highly critical situation.
The family spent six months with their little one in the newborn intensive care, and it was up and down, up and down for this family. The good days, the bad days, the period of bad days that just felt like they were an eternity. Those moments where they didn't think that the little one was going to make it. And then the optimism of, “Okay, we're going to get there. We're going to make it to the first surgery.” And then very, very sadly and tragically, the little one finally succumbed and couldn't make it.
In the period of time that the family stayed with us, the mom was here. Both parents were here staying with us. Father was working remotely. Mom had quit her job, and basically just devoted her time to spending her full days at the hospital with the little one. I got to meet with them and got to know them more so with mom because dad was busy with work. I spent time with mom and said, “What is something that would be just a little bit of an outlet for you? What would give you just a little piece of home and a sense of comfort?” She says, “You know, one of the things that I really go to when I'm having tough periods is baking and being in the kitchen. There is just something about that that's very therapeutic for me. I need to be in the kitchen, and I need to bake.” And she said, “I can't. I don't have that here. I don't have my kitchen.”
We worked through things with the staff here and got them to go over to the cottage and mom and grandma (her mother was here visiting). Mom and grandma had several hours where they just got to bake. We bought them the groceries that they needed, the baking goods that they needed, and they baked and sang and had a blast. Then the mother let me know the next day…she baked things and gave it to the staff. It was lovely. It was just lovely because she basically just shared her gratitude and her love back with the staff.
We did that a couple times with them. Then I would meet periodically with mom and basically do some emotional support sessions with her. She talked about... she was very realistic and talked about, “What if my little one doesn't make it? What if this... How am I going to cope?” In the end, the little one didn't make it, family left with empty hands. I was able to stay in contact and I'm actually still in contact with the family and just do check-ins with them and see how it's going. Mom talked about how hard it…kind of the double-edged sword of…how hard it was to go home after having been here at the house for six months, where she had developed this incredible support system and felt so understood and loved for what she was going through.
Then having to go back home where basically she had been away for six months and lost her connections with family and friends and not being able to have some of those people relate to her. We did some grief work with her and still do check-ins. There's a lovely fairy tale ending to this with this particular case. This mom happened to actually get a job with Ronald McDonald House (in Idaho).
JS: Maria, as I hear you tell these stories, I look at this and just say, “My goodness. How do you do what you do? How do you find the strength to work with these families?” With mental health being such a big deal right now, as a professional, how do you first take care of yourself and how do you find the motivation to really come to work and deal with all of these heavy types of situations?
All of the staff are really working as a huge team effort to support these families.
MG: I think the key part of it is I know that I'm not a one-man service. I'm surrounded by everybody in this house. All of the staff are really working as a huge team effort to support these families. I'm not in an isolated situation. Even though I might hear some individual stories privately with families, I know that I have a staff here that gets what's going on with families. And I have to remind myself. I mean, this is part of good mental health.
It’s the reminder that this is their story and it's heartbreaking and it's tragic to listen to it, but it's their story and it's not mine. We have to be very careful that we don't get into this mode of “this is mine and I have to carry it with me.” That can be easy to do, but I think we have to remind ourselves and we have to remind each other that this is this family story and we've had the privilege of walking with them through this period of time in their life and through this experience. But it's not ours and we have to be careful not to own it.
When you're in the service of helping people and supporting people, when you're in the human services, you have to have some healthy self-care. You have to find those things in your life that give you meaning and give you diversity in life because you can't just eat and breathe and live this stuff. It can definitely cause burnout. A big thing in the mental health profession is really trying to find that balance so that you can do your good work and you can find those outlets to rejuvenate yourself and refresh yourself so that you can come back the next day and do it. Then supporting the people that you work with and reminding them that they too have to take care of themselves and take care of each other. So, it’s a long answer, but that's what gives me the ability to keep going.
JS: Maria, I would just say we're lucky and blessed to have your leadership, your courage, and your clinical expertise. Thank you.
MG: Thank you. It's great work. It's a good mission to be attached to. It's a real privilege.
JS: Yeah. Maria, thank you for sharing. It's just so powerful and it's just so, again, amazing to hear. Carrie, let's wrap up our discussion with you today. Talk about what your hope is for the future of the Family Support Services Program for the Ronald McDonald House overall and how do you see this potentially evolving into the future.
CR: Thank you. We are excited about leading out with love here at Ronald McDonald House Charities. We're working hard to create more mission as in serve more families, better mission as in serve them better, and sustained mission so that as we grow our programs and mission, we're doing so responsibly. We are often running in that direction. The family support specialist position is absolutely essential for our organization going forward because as we look forward, we will continue to serve a high number of rural families who may have economic, emotional, and other stresses coming into their circumstances and situation.
We are growing our hospital-based programs. We're launching several new hospital-based Ronald McDonald family room programs. This new family support specialist position has focused efforts on families who are staying at the house but could potentially offer support to any family who accesses our services and resources within hospitals as well.
We are excited to integrate this position and quite honestly, I hope we can replicate it around the country. Because one of the wonderful pieces about our organization is we are each autonomous 501(c)(3) organizations in the Ronald McDonald House system, but there are hundreds of us around the world and in the US and Canada. I think this could be a model that we could share with our sister Ronald McDonald Houses around the country or other similar kinds of organizations. I have high hopes that we're going to continue to make transformational positive impact with more mission and better mission.
JS: Carrie, I couldn't agree with you more. When you look at this, the needs with behavioral health and how much that's in need today, and when you think about the difficulties and the challenges that the families at the Ronald McDonald Houses are going and enduring around the country. I see this as incredible potential and I'm so happy for the vision that you had and also the vision that the Cambia Health Foundation has to support this incredible program. I think the sky's the limit with this.
JS: We need to wrap up today's conversation. Carrie and Maria, I just want to thank you for a delightful conversation, for the insights, the information, and just the incredible passion that you showed around the Ronald McDonald House and this incredible new program. Thank you for today and thank you for the conversation.
MG: Thank you.
CR: Thank you, Cambia, and thank you, Jim. This is amazing.
Rachel Day (RD): Before we wrap up this episode of HealthChangers, we asked Peggy Maguire, president of Cambia Health Foundation to share a reflection on the episode and what she heard. Take a listen.
Peggy Maguire (PM): Wow. What a terrific conversation. I really loved listening to Jim interview Carrie and Maria. Jim is such an effective advocate for the Ronald McDonald House. He serves as a volunteer board member for them, and he is just so passionate about the organization. Carrie is such a strong leader and her energy is infectious. I love her energy and her sense of purpose. And then Maria. Her compassion, her experience, the way she serves and cares for families, it's just incredible.
What I really like about this investment that the Cambia Health Foundation made is that it takes a really effective hospitality model and turns it into something transformational. It takes a hospitality model and turns it into a direct services model, a wraparound model, a whole-person care model. And as you heard Carrie say, it's more mission and it's better mission. When families have to leave their homes and their support systems to care for a seriously ill or injured child, those families need support too. And this is what the Ronald McDonald House does.
If the parents' needs are met, they are better able to help the child heal. I think that's critically important to alleviate the stress on the parents and to support their emotional needs so they can focus on helping their child get well, instead of worrying about where their next meal is coming from or how they're going to pay their rent. All of our health is integrated from the mental health, the behavioral health, and even the social determinants of health. Think about how these are all connected, and they impact how a parent will be able to support their seriously ill or injured child.
This emotional support is absolutely critical in helping the entire family to heal.
The licensed clinical social worker (LCSW) also provides grief support to the parents as needed and to the siblings. This emotional support is absolutely critical in helping the entire family to heal. Cambia Health Foundation is committed to whole-person health in underserved communities. We want to make sure that everyone has access to what is needed to live their healthiest lives. This means supporting resilient children and families in our communities through their darkest times. We're so proud of this investment in the Ronald McDonald House. We know their leadership is passionate and committed to supporting families and making sure that they're treated, and their needs are met as whole people. Again, it's not just a place to stay. It's a place where people will be met with open arms. They will be supported in their emotional needs, and they will be connected to resources in the community.
We want to make sure that everyone has access to what is needed to live their healthiest lives. This means supporting resilient children and families in our communities through their darkest times.
This is such a revolution in the Ronald McDonald House model. This innovation can become a model for other Ronald McDonald's houses across the US and Canada. I want to applaud Carrie and Maria for the work that they're doing and Jim, for his advocacy of such a wonderful organization. Thank you for allowing me to listen to your conversation and offer my reflections.
RD: And that wraps up this episode of “HealthChangers.” You can find more information on all of our episodes at cambiahealth.com. You can also follow us on Twitter @Cambia (C-A-M-B-I-A). You can now find HealthChangers on all of your favorite platforms. Just search for “HealthChangers” on platforms like Apple Podcasts, Spotify, and Google Play. Please subscribe and leave a review. Thanks for listening.