Ashoke & Vinita Rampuria
In fall of 2010, our then 23-year-old elder son came home after completing his undergraduate studies at University of Pennsylvania. He told us that he had two incompletes which he needed to finish by submitting two papers and would start looking for a job. We were happy to have him at home and were looking forward to him completing the papers and finding a job.
However, we were quite surprised by his inability to complete small tasks. He had always been an excellent student and was accepted at 4 Ivy league Universities. At home, we could see that he was struggling. He would lay on the couch the entire day with no self-care and hardly eating anything.
On May, 2011, he was sectioned and taken to McLean Hospital. This began our family’s ordeal in navigating Massachusetts’ complex mental health system, as well as learning firsthand about the system’s shortcomings.
Our son’s first stay in a mental health hospital lasted a month. When he came home, he continued with his medications for a while. He even took a job, but could not hold it longer than two weeks. Soon after, he went off medication and started to go downhill again. This time he would not eat for days. On the 10th day of not eating, he was sectioned and taken once again to the hospital. After few weeks, he was again
released. However, the cycle of not eating and repeat hospitalizations went on for 6 more visits to the hospital over a relatively short period of time.
In October 2013, we came home to find that he had left a note on the kitchen counter saying that he was leaving home. In the note he asked that we simply tell people that he had found a job and had moved out. After a few days, we found him in Boston. The fact that he was not able to hold a job and maintain any social relationships, weighed heavily on him and he thought that people would think less of him because of that. The stigma attached to his illness was so strong and damaging that he decided to leave home.
We saw his mental illness take over his ability to function. He was not taking any medication, had no selfcare, was not able to engage in a conversation, and he lost touch with all his friends and family. We felt devastated and helpless.
From this point on, it started a downhill saga of group home, hospitalization, and then group home again. Wash, rinse, repeat.
For the next four years, despite our son's multiple hospitalizations, there were no positive outcomes upon his discharge. In 2019, he was admitted to Newton Wellesley Hospital and they treated him with an injectable medication. This medication really worked for him and he began to do much better. He started going out with his younger brother and began to spend hours talking to us. We were very pleased with his
progress. He kept telling us that he would like to get a job and live an independent life. He was supposed to take this medication once a month in the group home. However, he declined to take it. Like many, he suffers from Anosognosia, or lack of awareness of his illness. Anosognosia is the single largest reason why people with mental illness do not take their medications.
After about three months of doing well, he began to decline again due to lack of treatment. He was sent to Newton Wellesley Hospital again after about 9 months. They treated him for 4-5 weeks and sent him back to the group home. He did well for about three months and the cycle repeated itself, due to his refusing of treatment at the group home.
After his next hospitalization, he came back to group the home. We were pleasantly surprised that he took a job and was able to hold the job for 3-4 months. We were so pleased with his progress. We felt that we had our son back. However, since once again refused to take the medication in group home, he went downhill again.
At this point it became very clear to us, that if there was continuity of treatment for our son in the community, he could have his life back. He had a Roger’s guardian and a court approved treatment plan, but there was no way to treat him in the community. We started doing research on the internet and found that 47 states have AOT (Assisted Outpatient Treatment) laws and that Massachusetts is one of only three states which does not have it.
Following our research, we became convinced that such a law anf the continuity of care that it provides can save our son’s life.
This led us to launch the non-profit organization AOTNOW in fall of 2020, with the purpose of bringing an AOT law to MA. Since then, we have networked with family members and organizations, and have found countless other families who are struggling with the same issues as we are.
As we met with other families, we heard even more devastating stories. We have heard stories of people with SMI ending up in jail or worse, being killed.
We have heard people oppose AOT laws on the basis that they believe it takes away individual rights and freedom. But, under Roger’s guardianship and treatment plan in MA, we already have precedence of substituting judgement of the patient by a court ordered treatment plan. The only problem is that this treatment plan can only be implemented in an inpatient setting, with no follow through once the individual is released back into the community. It is the lack of treatment follow through, or continuity of care, which largely contributes to the failings of the mental health system here in Massachusetts
While not a one sized solution, AOT will allow treatment plans to be implemented in the community for continuum of care. Community-based treatment is the key to helping those suffering from SMI, such as our son, to lead happy, healthy independent lives – free from repeat hospitalizations and incarceration.
A strong continuum of care is proven to stop the endless revolving door of hospitalization, homelessness, substance abuse and incarceration of those suffering from SMI. AOT allows people to get treatment in the community on a continuous basis, recover from their illness, and live an independent and productive life with dignity.