I receive emails every week from parents frustrated by our broken mental health system. I believe these notes paint a more accurate picture of what is happening across our nation than the often optimistic reports that I hear from our elected leaders. Here’s an example of what a mother faced recently in Vermont after her son became ill and needed treatment.
My 19-year-old son was recently hospitalized and diagnosed with schizophrenia. We live in Burlington, Vermont. He had been seeing a psychiatrist at a local center here, and started on treatment with medication. We tried several different meds for him, with the doctor seeing him once a month. We soon realized we needed to either up the dosage or change all together because my son was not getting any better. I made numerous calls to the local mental health center, explaining his anxiety, delusions, anger, and the voices he stated he was hearing.
All fell on deaf ears.
On 11/19/2011, I received a phone call from the local police station. My son had been arrested for simple assault and was found wandering the town with a knife. I immediately called the center and they sent a crisis person to the police station, who in turn evaluated him and agreed he was in need of hospitalization.
Prior to this happening, our state mental health facility was flooded by the Irene storm and our local hospitals had to take in the patients from this facility, leaving not enough beds, not enough staff, and not enough doctors to handle the load of patients needing help and the incoming people who needed the help also.Because he was not a threat to anyone or himself, they could not help my son. That is the reasoning I got from everyone. Therefore, this terrible thing happened — with him being so full of anxiety that he felt he needed to carry a knife because people were following him.
Luckily, he had a great officer, who insisted he get help here in Burlington, VT and insisted they try to find him a bed at this hospital. My son sat in an ER for 2 days before a bed was available. During this time, he was in crisis, upset, angry, scared and unaware of what was going on. It had come to this.. he had to do something terrible, get picked up by law enforcement for them to help him.
He did spend 30 days in the hospital and although I feel it helped him, they really did not do anything for him other than give him medications and let him wander the hallways. There was no exercise room, no activities person, it was as though he was just waiting out his time.
Now he is out of the hospital and was discharged on 12/23/2011. We have been home almost 30 days, he has had no communication with his case worker. He has had one visit with the psychiatrist and there has been no contact from anyone at his mental health center in regards to what we do from here? He is just wandering aimlessly at home, pacing the floors (a habit he got while in the hospital) and just sadly slipping back into his old routines. Our community programs do not work here. We have very little housing for anyone in this situation. We have very little outside support.
I just wanted to let you know our status here in Vermont. Our Governeur Shumlin has decided we need to reopen another state mental health hospital, but it can take up to 3 years, as the old hospital is not going to be reopened due to the storm damage. These people cannot wait 3 years. The prior hospital held 50 patients, the new hospital is going to hold 15. To me, that is not a help. I am just frustrated and angry at this point and feel like I was so ignorant to this subject and now that I am completely within the process, I see where we need the help and the state is not doing what it should for the mentally ill people here.
I want to thank you for your videos, I have recently started to watch many of the speeches you have made. They give me great hope that there is someone out there that understands!Thank you,
Lynn Sayyeau
Burlington, VT
Thank you Lynn for having the courage to speak out in public and for all that you are doing to help your son. Have hope, be well, help others and know that people do recover!
About the author:
Pete, I can really empathize with the mother in your post; I was in the same exact position here in L.A. over my son. My son had to be hospitalized 6 times in one year because he was continually a danger to himself and others, and treatment was completely inadequate.
Fortunately, I found help at Los Angeles Dept of Mental Health, which had a Transitional Age Youth program, a “Navigator” who helped us connect with a specific agency care provider, and a fairly full range of services – weekly therapist and weekly case worker appointment, weekly “art” group, and transportation provided. Monthly psychiatrist appointment.
My son stabilized over a year’s time and has been able to go back to school albeit in a very limited way, taking one or two classes per semester. We’ve been able to add piano lessons to further support the healing of his brain.
However, it’s not over yet. The program lasts a year and now my son is on a once a month visit to the psychiatrist only. Supposed to be a monthly caseworker visit but I’ve yet to see that happen. Since my son does not authorize me to participate in his case concerns, there’s nothing I can do besides keep loving him.
Being that there is a protocol that works, I’d like to see it adopted everywhere in the U.S. Being that most of those afflicted are young men in their late teens, we should be proactive in our health care, and have this protocol readily available in all communities.
Thanks for posting this letter; it really touched my heart.
I went through similar situation a year ago in Maryland. When the hospital was ready to release my son, I explained that he needed to be placed in a RRP. The hospital social worker told my son that she couldn’t find a ‘bed’ available, and he might have to go to a homeless shelter. Imagine telling a patient he might have to be homeless in the deep winter freezing weather!!! I talked and worked with our local public Mental Helath office, and he was eventually admitted to the TAY (Transitional Age Youth program). The service provider of his program has no clinic. However, since my son is on Medical Assistance, I have been able to help him find both therapist and psychiatrist. The good part about the residential program is that they work with my son and set goals. He is now back to college. He has also been taking classes offered by NAMI, peer-to-peer, to understand that he has brain disorder. The journey will be long and trying for all of us. As family members, sharing information such as how to find help could be a good support for us all. Also, joining NAMI’s local support groups for family members has been a great help for me. Thanks.