There are so many things I want to say, and feel like I need to share, with the world. If I can make a policymaker see how critical the issues facing children struggling to achieve mental wellness in Texas are, or teach a parent or family member something about the system they are trying to get help from, or help a youth understand why it is so hard to overcome serious challenges to being happy for Texas kids (and that it is not their fault, their parent’s fault or even their school’s or therapist’s fault, but a failure of the system overall), then I will have accomplished at least in some small part the ultimate goal: safe, effective, sustainable mental health care for the children of Texas. Realizing this is my first blog post, the inaugural installation, I also realize I have dreams and ideals of how people will use this blog, and the reality of it all will be much different. However, my goal is to be able to impart the knowledge that I have gained through live experience raising my own children and research I have done for personal and professional reasons, and sometimes a combination of these. At the onset I would say this will be 10% “mommy blog”, 90% relevant children’s mental health advocacy content. It will be fun to look back at this 6 months, a year, 2 years from now, and see if I was just inspired or delusional. Only time and active blogging will tell.
My plan is to very actively blog on resources, evidence based practices (EBPs), cutting edge research on mental health diagnoses, and advocacy vehicles and structure at the state level between now and when the next legislative session begins in January 2015. I then hope to very actively blog during session about issues that come up related to children’s mental health and family engagement, hopefully referring back to the resources on which I blogged leading up to session. This will ultimately serve to catalog my journey as a mom going through a legislative session and all the hearings and processes involved, for the first time. Hopefully by this time next year I will have created either a really great resource for parents and policy makers, or another chapter for my memoirs later in life.
Why now? I have considered writing in many forms for years. I’m sure I’ll pen my memoirs one day, but for now there is a much more timely objective: change. As I become more involved in advocacy at the state level for public policies that make sense for families, I see the potential for the sharing of information to be able to make a very real difference in my state. If I can share with you what I know and understand about the systems in Texas, and how they play a significant role in the success or failure of our efforts to help our children thrive, maybe you’ll get motivated to act. Whether acting on an individual, community or state level, any amount of informed action towards change will add to a collection of actions all across this great state. Texas is huge, and we have a bunch of kiddos to care for. According to U.S. Census projections and Texas Health and Human Services Commission, we will have a child population just over 7.5 million by 2015. There are 254 counties in Texas, and serving them are just 38 Local Mental Health Authorities, or LMHAs, formerly MHMRs. These community mental health centers provide a range of services, which I will blog about, and they do not account for countless private mental health providers in Texas. The communities in which we care for the mental wellness needs of millions of children in Texas spans a vast landscape that includes every ecosystem, including cultures which are just as diverse. And yet, I feel a responsibility to each of these 7.5 million children in the 38 LMHAs covering 254 counties.
I literally feel a sense of responsibility to the children of my beloved Texas. Almost as an extension of my own two girls and the knowledge that I have gained through fighting for them for many years, like a better understanding of how to navigate the different systems that impact their lives and the policy decisions that have been made along the way that impact the ways in which those systems currently operate, suddenly brought me to a place where I felt I needed other families to understand both their rights and their responsibilities. The point that tipped the scales for me was when I really began to study and learn and feel the true gravity of “evidence based practice”. One thing I can without question commit to you, my readers, is that if I bring you information, I will back it up. If I tell you about trauma-informed care, and I will, you can bet I will not just tell you what I know from my own research, I’ll show you where you can find the evidence from the National Child Traumatic Stress Network (NCTSN). When I start talking about Systems of Care, you can bet there will be proof and explanations from the Substance Abuse and Mental Health Services Administration, or SAMHSA. Included in all of the ideas and concepts I want to share with you will be their impact to families. I want families to understand how they can, in turn, light a torch in their communities, and bring awareness to their families and communities about what truly can and should happen for the mental wellness of our children.
Now this may seem like a tall order. I can tell you my closest mentors and friends have mentioned to me a few times, “We love you’re energy and we know you’re passionate… we just don’t want you to burn out!” I often tend to blow these well-meaning comments off with comments like, “This work is my self-care!” However, as important as self-care is, this work, in truth, is my constant reality. I think about children’s mental health every waking moment, and many of my sleeping moments as well. I can’t escape the realities I’ve lived and witnessed, experiencing the loss of my children’s innocence at the hands of the “system”, as if playing out on a screen, helpless to stop it. Like watching a horror movie, when the scared girl runs into the closet while you’re screaming from your assigned seat, “Run!” Sometimes I’m the girl in the closet, too. For families that have experienced the perils of the mental health system for our children in Texas, be it public health care or private funded insurance systems (and I’ve been through both) the results are unanimously the same in Texas: substandard. On this point I am sure many would disagree. Some will want to share with me their children’s stories of success. I cannot speak for anyone else. Maybe it was the complexity of our families circumstance that lead to poor outcomes. Maybe it was my knowledge as a clinical nurse, allowing me to question where others did not know they could, or should, that lead to poor outcomes. Maybe it was that I allowed my children to speak freely. I will tell you what they have told me: any child that tells you they got “all better” by being inpatient is probably lying to you, in the ways in which the system conditioned them to.
These issues most often involve those complex cases that include multiple or complex conditions. This is often referred to as Severe Emotional Disturbance (SED) in children, or Serious Mental Illness (SMI) in adults, and I will discuss that more broadly. Some of the specific conditions I plan to cover are depression, bipolar disorder, schizophrenia, personality disorders, and conduct disorders, and how some of these can ultimately be misdiagnosed as each other, or worse, diagnosed in lieu of an understanding of children traumatic stress. PTSD for kids, or Child Traumatic Stress, is, in my opinion, one of the least understood and most under-diagnosed conditions with which our children struggle. Their struggle is for survival, and I will do my best to cover this issue as well: suicide. Unfortunately, it is not as easy as calling a 1-800 number for help. I am not discounting this invaluable resource, but I do think it is much more complicated than that. I know this from talking to my children, and I think (and research shows) we should be talking to our children much more. We should get their input on every issue that impacts their care from an individual basis to state policy decisions. So I will cover the need for Youth Voice, the Youth Bill of Rights, and current youth lead advocacy efforts such as YouthMOVE and ACCEPT.
I will also more broadly talk about Family Voice and family engagement at all levels, like our newly formed Texas Family Voice Network, a strong coalition of the family lead organizations like the Texas Federation of Families for Children’s Mental Health and Texas Parent to Parent, and our advocacy partners such as viaHope (Texas Mental Health Resource), the National Alliance on Mental Illness, Mental Health America, Texans Care for Children, the Hogg Foundation, the Meadows Foundation and many other community organizations across the state. I will also discuss a family’s, and their child’s, right to choose their treatment, and what those options are today, such as inpatient hospitalization and residential treatment centers, and what options should be more often available, such as community mental health options currently provided through Medicaid waivers in Texas, but that should be available to all Texas’ children.
I will share my story of transformation from angry parent to fiercely passionate advocate, and explain my vision for how families can and should be infused throughout every level of every system that impacts our children with complex needs. This includes the LMHAs, which are administered by the Texas Department of State Health Services, the public school systems in Texas, or Independent School Districts, which are (loosely) administered by the Texas Education Agency, the Juvenile Justice system and the various ways public safety officers interact with our children, the Children Protective Services, which is administered by the Department of Family and Protective Services, and all the places in-between, like primary care providers, family members, teachers, neighbors. Sometime these interactions can be positive, sometimes the stigma that exists in our culture makes a potentially life changing experience turn devastating. Sometimes how we as parents handle a situation can make all the difference in the world, sometimes the best laid plans can crumble at the hands of a burnt out case worker. I’ll do my best to cover each of these scenarios, and many in-between.
The point is that there are many in-betweens. This is the essence of systems. Whether we are talking about your family system, or the systems of care that impact your family, they all have many moving parts. Figuring out how to fit together the moving parts is where policy can be our salvation or our demise. Some of the things I believe will lead us to success in children’s mental wellness are System of Care and Trauma Informed Care, including in-home treatment options and nontraditional approaches to therapeutic interventions that are driven by the client. I would like to challenge families to educate themselves, learn about current best practices, and learn how to advocate for those things they believe will change the systems. So I will discuss the legislative process, including the upcoming legislative session, but more urgent, the Sunset Commission reviews that I anticipate will be a huge influence on children’s mental health during this coming session. I will also discuss the various advisory committees, such as the System of Care Consortium, the Children’s Policy Council, the Task Force for Children with Special Needs, the Council of Children and Families, and how each of these plays a role in the policies that can either narrow or widen those gaps in the systems that impact our children that struggle for mental wellness.
So, yes, this is a tall order, a monumental task. This is the knowledge floating around in my mind, and I have this notion that maybe some of you out there might benefit from finding it cataloged all in one place. If it serves no other purpose, this blog will serve to organize all of this into one location for my own personal reference. However, my greatest hope is that families will find this in some way useful. My journey of statewide advocacy truly starts here and now, and I look forward to sharing in this journey with you, my readers. Please follow me in the places that work best for you:
Disclaimer: I am just a mom. Views expressed are only my observations as a mom, and are not in any way intended to be professional clinical advice. If you or someone you love is in crisis, please contact their healthcare provider, go to the emergency room, or call 911.