MOTFL 011 JAM 011: Finding Services – a mother’s journey

In this episode, we listen to a mother of three children with mental health diagnoses who works as a Family Partner with North Carolina Families United. She discusses the barriers families face when trying to get their children services and her own experience of moving her family to another county in order to get mental health services for her child. Transcription [music] Female Speaker: Mothers On The Frontline is a non-profit organization, founded by mothers of children with mental illness. We are dedicated to storytelling as a method of both children’s mental health advocacy and caregiver healing. Our podcasts consist of interviews of caregivers by caregivers out in the community. This results in less polished production quality but more intimate conversations rarely available to the public. Caregivers determine how they are introduced, and the stories they share. We bring these personal experiences to you with the aim of reducing stigma, increasing understanding, and helping policymakers recognize and solve the real unmet needs of families dealing with America’s current children’s mental health crisis. [music] Welcome to the ‘Just Ask Mom’ Podcast, where mothers share their experiences of raising children with mental illness. ‘Just Ask Mom’ is a ‘Mothers On The Frontline’ production. Today, we will speak with a mother of three children with mental health diagnoses. She works as a family partner in North Carolina, with North Carolina Families United. Tammy Nyden:  Well, hello. I’m just going to ask you to tell us a little bit about yourself, either before or outside of mothering, what are your passions? What do you love to do? Mother:  Family time. I love family time. I like spending time with my immediate family, like my at home family and my extended family. So family values mean a lot. My husband race, so we do go to the race track a lot because he race motorcycles. And sports. Because my kids do basketball, and soccer, and volleyball. They compete each year, and I used to run, so sports activities is things that I like to do.  Tammy:  Well, that sounds like fun. Like a lot of fun in the house. Mother:  Yes. Staying busy.  Tammy:  Staying really busy. That’s really cool. Mother:  Stay very busy. Tammy:  The racing would scare me a little bit. Mother:  It does. I don’t like for him to race if I’m not there, but I’m used to the race track. My uncle used to own a race track. My cousins race cars, so that’s something that I grew up with. Tammy:  So you’re used to it. Mother:  So it’s kind of you know, the fact that we met, and that’s his thing, and I grew up with it, so it’s something that we had in common. But, yeah, it bothers me if I’m not there. Tammy:  It sounds exciting too, though. Mother:  Yeah. It is. It’s an adrenaline high, basically, yeah.  Tammy:  Absolutely. Yeah. Cool. So, I want you to pretend that you’re talking to elected officials. What do you want them to know about your experience? What do you want them to understand? Mother:  It would be the difficult things that families go through to get services. That when they choose to cut funding in certain areas, how it affect families, especially families in rural areas. How hard that families and children fight for services. How they can be overlooked and/or mistreated because the service that they need is not available to them. To probably take themselves out of the equation when they’re making these decisions because they may or may not have had to experience the things that we have had to experience. So how could you make a judgment or make a decision based off of data? Because data doesn’t tell it all. Stories can tell you some things but data can only give you numbers, and numbers is not a good way of determining whether or not it’s beneficial for one particular area. Tammy:  Can you think about certain things that you’ve seen that have been cut or not cut or just programming that you could have used that weren’t available? Mother:  I mean, no, ’cause so my son is now seventeen, and we started this journey back when he was five weeks, basically. And when his diagnosis came into play and I actually moved from county to county to get services. And so I’m from a smaller county in North Carolina but then I moved to an even smaller county in North Carolina to get better services. Tammy:  Really?  Mother:  But I feel like I should not have had to uproot my family to go somewhere else to get services. And I stayed there for a while, and I mean because of the problems he was having, I owned my business and couldn’t run my own business. I had to be a stay at home mom because there were not people that could take care of him. Or the doctors didn’t feel comfortable with him going to a daycare, not even to my own if I couldn’t be in the room the whole time. Tammy:  That’s a lot of pressure on you too. Mother:  Yes. It is. So I became a stay-at-home mom when I really wasn’t ready to be a stay-at-home mom. And then that fact that you have people, I mean like the agencies that I was working with in the smaller country, they told me, “When you go back home, you’re not going to get these services.” Now, not to say that the services are not available, but you’re not going to get these services. And it is because of the fact that these agencies/organizations or governmental agencies have to right to hold onto funds, and if those funds are not used within a certain time frame at the end of the book fiscal year, they can use it however they see fit. So if it’s something, they won’t really get money for something else, then they can say it’s not available and/or needed for our children, and hold onto it, but then they can spend it somewhere else. Tammy: So they’re motivated? There’s– Mother:  You’re right. Right. So now in North Carolina, they are trying to pass a Bill where it’s going to prevent them from doing that, but that’s a process, but that’s now. So what’s going to say that when it’s time for this Bill to go through that the elected officials are still in play? Tammy:  Right. Mother:  If they’re gone, then we got to start all over again. So I mean, even though it’s uncomfortable, I mean, my daughter was in school so I had to uproot her to go somewhere else just so her little brother can get services. And then you know, you have families that they may make a dollar too much and they can’t get Medicaid. I feel like that these private sector insurance companies need to understand the importance of services. And I feel like if the government can make the insurance companies do so much as far as you know, the Affordable Care Act and all of that, then you need to have them to implement or demand that they do mental health services or IDD Services. Something, because these kids should not be without as well. The only way you can get services for your child like that if you deem your child a risk to society and then they would give them residential Medicaid for the time frame that they need to be put away to get the services to make them successful in the community. And they should be able to be successful in the community, in the community.   Tammy: Well here is the question. And we’re in different states, so I know it varies state to state, but even if they have residential and they come home if there are no community services… Mother:  Then they go home. Tammy:  …they’re starting all over again. Mother:  They’re starting all over again. Tammy: They’re starting over again Mother: Uh-hmm. And I think that requires a lot of advocacy work. Like my job, I’m a family partner so I advocate for the families in North Carolina. So who I work for is the state chapter for North Carolina. The family-ran state chapter. So we take care of all of North Carolina. So I advocate for those services. I attend these school meetings and these DSS meetings, and everything to make sure that the families voice is heard and that the families get what they need. I sit on Care Review because I’m going to be that voice that’s going to keep that child out of residential. They try to implement those services in the community and we stress the importance of giving that family a wrap-around service. Give them a family partner, get that youth a youth partner. Somebody that has been there, done that. That could help guide them through the community to help them be successful because, in the end, the government’s going to say, “Money”. It’s just getting them there. Tammy:  Exactly. Exactly. Mother:  I mean, every time something goes wrong it falls back on mental health. Tammy:  Yes it does. Mother: But you take away our money.  Tammy: What’s so hard too is kids, they’re like anyone else with mental health conditions, physical health conditions and ebbs and flows, and when the kid’s doing better, say, “Oh, you don’t need them anymore” Mother:  And you know, I see that it’s not that you don’t need it. Maybe you need to be put on maintenance. Tammy:  Yes.  Mother:  Put on maintenance. So that means that if my child is doing good, then he or she should not have to go see somebody every week. Put them on maintenance, but don’t say that if he has a flare up thirty days later, that we have to go back through that assessment program all over again. Tammy:  And start from the beginning. Mother:  Yes. So to me, that’s not fair, because nobody wants to have to continue to have to tell their story to somebody strange, over and over again. And it’s pertinent if you get them young, put the money where your mouth is, that you don’t have to worry about these older people. So I really feel like … Sometimes when we’re voting or when we choose not to vote, there’s a consequen...