The 988-crisis hotline has gained traction over the past two years with greater federal support and guidance to states and communities. It can become the bridge from crisis to life-saving support for many years. This blog will provide a realistic experience of dealing with a local 988 crisis response to increase knowledge and bring about meaningful change to improve the system. These thoughts are my own and do not indicate Change Matrix or any partners’ thoughts. It simply serves as a reminder that real people are behind the other line and how we can best meet their needs.
In 2023, I had a loved one who was in crisis. Though we were in the same state, I was hours away. My loved one was indeed in crisis with multiple 911 calls, and their mental health was dire. I could see my loved one spiraling out of control through the camera I had installed in their living room (for their and others’ safety). I could see the frustration on the police officers’ faces and in their tone as they responded to yet another emergency call from my loved one for the fifth time that evening, and this had occurred for several weeks. 911 call after 911 call resulted in the police chief offering advice to my loved one’s support system to have the court mandate our loved one be institutionalized. That was indeed a scary feeling to think the crisis had gotten that far. This was after a couple of short stints in psychiatric care, so it was even more heartbreaking to hear longer-term care was a recommendation from the police. I get it; it is taxing to have to continue to respond to someone having a mental health crisis repeatedly, so this is not placing blame on anyone. It simply illustrates the several layers of the crisis onion.
On this evening in 2023, my loved one’s support system and I racked our brains as to how to help and address our concerns. This is when I heard the worst words you could imagine someone you love so much saying (paraphrasing), “I guess I should kill myself since no one seems to want me here. Maybe I should just commit suicide!” Talk about a blow to the gut from miles and hours away! This is one of the most fearful events I have ever participated in. Instead, I would be involved in extreme turbulence in an airplane with nowhere to go than to hear those words again. I was at a loss. my loved one’s support system and I decided to contact the police once again for a wellness check.
Once again, a recommendation was made to get the court to mandate institutionalization. I asked, “How does this help the immediate crisis and ensure my loved one will not follow through with unaliving themselves?” There was no correct or helpful answer. After researching safe places our loved one could go, my sibling came across the 988 hotline. We agreed to call the hotline immediately, and within minutes of that dreadful night, a mobile crisis responder was dispatched. The biggest problem was that my loved one lived in a rural community with no local crisis responders, so the responder would take over an hour to drive there. My first thought was, I pray to God, that he buys us time for the responder to get there and for my loved one to not have gone through with their threat. Thankfully, the responder did get there, and my loved one was home and had not followed through with it. I could see from the camera what was happening and what was being said. This is when I noticed my loved one transforming their behavior into their best Christian behavior with pleasantries and bible verses. To my surprise, it worked as my loved one had hoped. There was no recommendation for them to be hospitalized or go under longer-term psychiatric supervision. My loved one had won this match of wits and was angry that we had even made the call. Their biggest complaint was, “I am not crazy. I do not have mental health issues!” even though they are clinically diagnosed and medicated. Still, we had to shift the conversation to it not being about any specific mental health conditions and all about their saying they wanted to kill themselves. That also did not sway my loved one. It was a roller coaster of emotions.
SEEING THIS FROM A TA PERSPECTIVE
As a life experience and a TA provider, there were some challenges I saw firsthand with the response (again, to no fault of anyone, but this serves as a reminder that all good things could still be better):
My loved one falls into several marginalized categories: severely physically disabled, deaf or hard of hearing, minority (gender and race), elderly, living in a rural community with minimal resources aside from first responders, hospitals are over 20–30 minutes away, and they do not accept their mental health clinical diagnosis and will often use religiosity as a way to not comply with a medical regimen especially when they are spiraling (stigma). The 988 responder drove over an hour to get to my loved one. What if that was too late? What if my loved one was truly serious about unaliving themselves? Why are there no responders within a 20-mile or less radius? Our most significant hospital system near my home area is 20 minutes away in a larger city. Why are there no responders there?
Essential Question: How do we engage and train the local workforce to participate in the 988-crisis response system? How do we engage local hospitals and behavioral health systems to participate as 988 mobile crisis responders instead of relying on scarce resources?
Due to them being hard of hearing, there are limited resources available, and responders do not know American Sign Language, even though the community has one of the most extended schools for the deaf! Local police and first responders do not know sign language. My loved one does as a former teacher at the local school for the deaf. This makes communication almost impossible, and messages are only sometimes interpreted correctly. The 988 responders did their best to communicate by speaking loudly, but my loved one will pretend to hear every word, but medically is hard of hearing due to an infection that took their hearing over three years ago! Having ASL interpretation would have been ideal, or using a speech-to-text app could have been another good option.
Essential Question: How do we support those with disabilities, such as the deaf and hard of hearing, to ensure clear and correct communication? Do we train the workforce, including first responders and police, in ASL, or are there other resources like talk-to-text apps that can be used as a standard when communicating with that population? Should this effort be standardized across systems of care since there is a likelihood, even if small, of engaging with someone who is deaf or hard of hearing?
Institutionalization was recommended, but is that always the best recommendation? When dealing with 911 and first responders, there are other things they can do with their time, but why is court-mandated institutionalization the first recourse?
Essential Question: How are first responders in rural communities being trained in mental health response? Are there other resources that could be combined with a first response to ensure all areas of a crisis response are addressed, such as training, integrating mental health experts in the response, etc.?
When the 988 mobile crisis responders interviewed my loved one, immediate family members were not a part of the conversation. Neither my immediate support system nor my loved one’s immediate support system were questioned about the events that warranted us to call 988. How do you get the complete picture before recommending continued care if you are not engaging others who have witnessed the crisis?
Essential Question: How can the 988-crisis service engage those directly witnessing the crisis of older individuals in the mobile response interview? Should this also be a part of the 988 mobile crisis response delivery?
I am thankful my loved one did not follow through with what they had pondered, and we found the 988 hotline. I am grateful because, as a TA provider, it did give me more insight into the barriers still facing marginalized, disabled, and rural communities. Even though I felt my loved one was not being fully transparent about their feelings during the 988 mobile response interview, I am happy they had “someone to talk to (face-to-face),” and maybe that was all they needed. In retrospect, even if there are some areas we can improve with the system, I am thankful that the 988 hotline exists, and month after month, SAMHSA and other care systems are working diligently to enhance response services! Rome, Italy, was not built in a day, and an extensive crisis system is the same. Still, listening to real experiences will help us, as TA providers, funders, and policymakers, to better serve communities that are often overlooked or need specialized services. I am thankful for the experience, the outcome (which is my loved one is still here and now taking responsibility for their mental health care), and that I am engaging in this work and can be a voice for the voices that are not always heard. There was no better time than now for me to join the ranks of Change Matrix in this work, and I hope these words inspire us to take this work seriously and keep moving the services forward for the greater good of all people!
If you or someone you know is experiencing emotional distress, know that there is support: 988 Suicide and Crisis Lifeline — call or text 988 for support
