Never thought I’d hear the words, “ Can’t Help You, You Are Too Unwell”

I try to imagine a time when a physical health provider would or can say- I am sorry, you're too ill, I need to decline treating you, and no, I don’t know where you can go for treatment. Sorry.

I further imagine being in an ER room and an ambulance bringing in a child with diabetes and gunshot wounds, and the admissions team saying… I am sorry, we are declining to treat due to acuity. Yes, acuity, the likelihood that you won’t heal well, and it will require more work than we are prepared to give at this hospital, more support than we can handle here, so we need you to find another hospital. You can use our phone in the lobby if you need to though.( acuity: danger of being sick, or who is very sick- how much “work” they need from a medical standpoint.)

Surely, if a hospital does not have a pediatric endocrinology unit, they would stabilize and would arrange transport to a facility that does, after stabilizing. Not turning over the search to the family, just hoping for the best. 

I don’t have to imagine intensely or earnestly,  as this is the exact scenario my family is experiencing. Our son has been declined services at every hospital across the state due to acuity, and neighboring states. I don’t have to imagine a hospital saying that they agree our 16 year old son is in need of a higher level of medical treatment and facility after facility declining him due to acuity. I don’t have to imagine, as that is what I have heard over, and over again in the last 11 days. 

Our son has been suffering from major depressive disorder for just under a year now, actually he has been diagnosed for just under a year, he has been living with MDD for much longer. He has participated in several programs both inpatient and outpatient and we have not been able to find the right balance of medication, therapy and strategies to help him live the life he deserves, we all deserve to live. He has a lot going on in his head and heart and it has been absolutely heartbreaking to bare witness to, as his struggle, like many teenagers struggle, has not been one that follow typical patterns of how one perceives depression and anxiety. He has gone straight to acting out in many ways, and burying his hurt deeply until it’s unbearable in other ways. He is an extremely intelligent, empathetic teenage boy who also makes some really poor decisions. He has made many mistakes and he will tell you. There are consequences for mistakes- we remind all of our children of that all the time. Not being able to secure the appropriate mental health care should never be one of them. His last mistake was swallowing magnets- yes you read this right, swallowing 3 round magnets. He is impulsive and as my mother often said to me growing up, “for all the book sense you have in that head, there is no room for common sense.” This was not an attempt to hurt himself or end his life, it was an impulsive, reckless action that has had unforeseen consequences on several levels. Most significantly, preventing him from receiving the appropriate mental health help he needs so that when he is stabilized he can get back to completing his junior year, his AP course work, in a healthy manner.

We are not fighting this alone, the hospital social worker has engaged pretty much every single mental health facility in our state. She sends the referral after a bed is discovered to be available. The reply over and over on a painful, hopeless loop? Declined, based on acuity. His doctor has shared this is not unique to our son, she has encountered this more times than she would like to admit. We have engaged our insurance provider for help. We have engaged the State Mental Health Agencies. We have engaged The National Alliance of Mental Illness (NAMI) National Advocacy and Local offices. We are now engaging with a Mental Health Lawyer. We are blessed and grateful for their assistance, help and services. However, should anyone require this much support to secure the appropriate health treatment? 

There are MANY reasons this is even a possibility. First and foremost the privatization of mental health facilities-while likely well intentioned to address underfunding- has had many unintentional and dangerous consequences. Privatizing caused a significant decrease in the amount of beds available for patients upwards of 14%. According to the Treatment Advocacy Center, 97% of “beds” have been eliminated over the past 50 plus years and over 50% of the beds that are available are reserved for mental health offenders (meaning patients who have not committed a crime have less likelihood of getting appropriate care). Privatizing has given mental health facilities the ability to accept, decline, and remove patients at will. This also allows facilities the leeway to accept or not accept private insurance. They can decide how low long or short a stay needs to be, based on the insurance they can collect and then require private pay in the tens of thousands per day/ week. There is much written and debated over the severe consequences of privatizing our mental health providers. Further, youth who are dependent on publicly funded health services (particularly poor and underserved) are disproportionately affected. Or in our case, a youth with a perceived unique/complicated need. What ends up happening, they are sent home without the appropriate support and care no matter how well intentioned the family may be- and then what- who is responsible for the potential deadly and life changing consequences. So much for protecting our most vulnerable.

The stigma mental health awareness and acknowledgment from those who do not know better, has become a personal and professional passion of my wife and I. We have been actively educating, training, advocating for mental health awareness in schools and districts across the country. We have been working diligently to do our part to stamp out stigma and help to create systems to remove barriers for school and families to access appropriate mental health care. So this stigma we are encountering within the mental health community feels impossible to swallow. 

This is not our first time dealing with the stigma, unjust, inequitable, downright criminal behavior/systems/actions of so many of the moving parts that consist of our mental health system. We have a very long history of navigating this dysfunctional mental health system, have yet to be surprised how broken it is, and with all of our training, knowledge, education, connections, means have had the most difficult time navigating it. I do not know how families who are still trying to navigate their understanding, identifying their support network, educate themselves on the implications of mental health challenges are ever expected to secure the help they or their loved one needs and deserves. This is criminal and this needs to change. How many of our children will we lose before we stand united to fight this battle.

Right now my son is still sitting, medically clear, waiting for appropriate treatment, slowly losing hope and, quite frankly, his will to be better- feeling like he is too broken for anyone to help him.  We keep fighting, advocating, and remaining hopeful and yet I can’t help and grow angry. I go to work and continue to train my students and staff in Mental Health First aid, practice healthy physical and mental health strategies for our overall school happiness agency, advise families when students are in crisis and yet am completely powerless in securing my son the help he deserves. This sucks!

If you are anything like me, you are probably wondering… well this is not right and how can I help? Honestly, I am not sure how anyone can help our son and our family at this time. ( unless you own a facility, are a director of admissions or attending psychiatrist at any mental health facility in PA, NJ, DE and MD and will review his referral without blanketly denying without consulting his therapist and team) We have been afforded many resources and are still stuck, and will continue to do our very best. I worry about the families that do not have the support system we have. I worry about the families that feel the shame I once felt about even asking for help or allowing others in on the journey. And there are things we all can be doing as we fight the battle in our country of securing appropriate mental health, ending stigma and promoting awareness. 

What can you do?

  • Share your story- sharing your personal experiences of living with or being impacted by mental health can provide support to others, destigmatize mental health and can be a key component of maintaining your own wellness. 

  • Share this story- awareness is power and when we know better we can do better ( thanks Maya!)

 https://www.thenationalcouncil.org/capitol-connector/ 

  • Become A Leader In The Mental Health Movement: Make a change in your local community/ school by being an advocate for mental health awareness. Connecting with your local NAMI office can provide you with opportunities to address cultural barriers, receive education, raise awareness, join an event, and connect others to resources. https://www.nami.org/#

#aBedInstead #endSTIGMA #StampOUTStigma #mentalHEALTHmatters

Kristina MacBuryMental health, mental health awareness, End StigmaComment