Please join caregivers of those living with a serious mental illness in advocating to bring an Assistant Outpatient Treatment law to Massachusetts, a law that 47 other states have already passed. We are shattering the silence in coming together to have our voices heard.
This letter will be sent to the Joint Committee on the Judiciary where AOT legislation currently sits:
RE: Support for S.980/H.1694, An Act to provide critical community health services
Dear Chair Eldridge, Chair Day, and members of the Joint Committee on the Judiciary,
We are a coalition of caregivers and individual family members of those with a serious mental illness (SMI) who support Involuntary Outpatient Commitment (IOC). We write to express our support to S.980/H.1694.
Our caregivers are parents, family members, and loved ones of those with an SMI diagnosis. SMI includes many diagnoses, but this coalition mostly represents those falling under schizophrenia, schizoaffective, and bipolar disorders. One of our caregiver groups supports 90+ families dealing with SMI in their household.
Caregivers perform the daily work of caring for and advocating for the needs of their loved ones. They are the ones who attempt to cover the gaps in our current mental health systems that fail the most vulnerable of mental health patients. They work tirelessly to ensure their loved ones have the opportunity and access to treatment and services. They are the linchpin in the recovery of their loved ones. The state, professionals, treatment providers, and their loved ones depend on them. Yet, they are voice is almost universally ignored.
Caregivers for patients with SMI fight for the lives of their loved ones daily, fight to overcome the stigma, and fight to overcome all the barriers put before them by both the mental health system and even their loved ones. Family members playing the role have a long history and deep emotional ties to understand the needs and inherent intricacies of the behavior of their loved ones. Behaviors that can limit a person suffering from an SMI to get the treatment they need.
Caregivers are people like you reading this letter—spouses, mothers, fathers, daughters, brothers, aunts and uncles. We are ordinary folks caring for someone dear to us, whom we have nurtured and supported all their hopes and aspirations for their future. Somebody who is now thrashing around for a lifeline in a sea of bewilderment and doesn't recognize they have an illness and need treatment help. They need access to treatment to get them stable. To get forward movement and to get to a point where additional treatments can begin to recover some of who they were.
IOC provides a lifeline to caregivers to get the most non-compliant and stubborn of those with SMI to the safety of treatment. It is another tool in the box to get a loved one to avoid homelessness, incarceration, and being left as discarded by the current mental health system. It can help prevent them from becoming another statistic and heartbreak for us caregivers, and in some cases, avoid their demise to suicide or, historically, for some, the next family tragedy.
In reading opposition letters to S.980/H.1694 we have received, we feel it essential you are presented with all views of the arguments. So, we provide a few alternative takes for you on these arguments below.
Anosognosia
It's generally accepted that approx. 50% of those with psychosis disorders do not believe they have an illness. The term anosognosia is commonly used in describing this limitation, which impacts getting treatment and medication for the individual or staying on treatment. This term is also known as "lack of insight." In the most stubborn cases – where IOC is intended to be engaged - this is likely to be 100% of cases as if they were on medication, we would not anticipate needing IOC engagement. As an onlooker, you can call it what you want; we just use the terms others use to describe the condition. The fact remains they do not believe they have an illness. As a caregiver, this can be the primary barrier to getting a loved one the treatment they need.
It seems like a waste of time to argue over semantics and an unnecessary distraction and tactic to oppose IOC; we are after a more significant prize in this Act than getting at the correct term for not recognizing they have an illness.
Coercion and Civil Liberties
Coercion is a somewhat inflammatory term. It is about using threats to get to an outcome and ignoring free will or civil liberties. It is used in several letters we read, particularly from NAMI MA and some coalitions opposing IOC. The term coercion conjures up an image of people in white coats holding down an individual on a bed and forcing down a pill in their mouth or an injectable concoction into their body. Our reading of the ACT suggests that IOC does not support this "coercion." Indeed, there are processes identified in the bill for non-compliance of treatment and remediation. So, there is recognition that some people will not participate or lapse in their treatment.
As a caregiver, we know our loved ones are not criminals, but their behavior and refusal to accept treatment often escalate to the point where they are incarcerated. This profoundly disturbs us, and we'd want to use every mechanism to avoid this outcome. An outcome that would be more traumatic to our loved ones than being helped in the proposed IOC health service.
We've also seen opposition to the IOC citing the World Health Organization's (WHO) statements about coercion and its advocation for voluntary community services worldwide. Caregivers live in today's reality and what is available to them now or in the immediate future. WHO can and should take a world view and longer outlook perspective. Caregivers based in Massachusetts attempting to fulfill the needs of the most vulnerable here with SMI don't have that luxury, and there is much work from a national perspective to align with the goals of WHO before implementation to meet their goals. Again, IOC is today and maybe a stepping stone but a lifeline to what is needed now.
Alternatives to IOC
There are several alternatives identified to IOC – the NAMI letter identified a number. We applaud NAMI for recognizing these needed services. In reviewing these, it makes sense to provide environments for the continuation of treatment. Still, we are skeptical they can replace the focus and means of stabilizing somebody non-compliant with treatment. One could argue we need these today. If they are identified now, a caregiver could ask why they have not been implemented already. They provide ongoing services to people with SMI beyond crisis intervention. These should be available today for crisis prevention.
We have to focus on the realities of today. The IOC Act is all we have in front of us, so we need that to be our focus. Advocating hypothetical programs in Massachusetts feels like "kicking the can down the street." These alternatives may or may not happen. Funding may not become available. As caregivers, we urge the committees to focus on IOC for today and support it as the first step in addressing a failed system for non-compliant clients with an SMI diagnosis.
Conclusion
What is the outcome if this Act is not passed?
For those patients with SMI that this Act intends to help, they will continue to be "imprisoned" to living with psychosis for the rest of their lives or until circ*mstances change and treatment is accepted. As caregivers, we are also sentenced to watch our loved one’s struggle in an environment not able to support them in getting treatment and stability. The lifeboat to help them will have sunk before it made it out of the harbor. We are told by professionals that early intervention is essential for the best outcomes. So, for caregivers, waiting is not an option, as their loved one's behavior tends to get worse without treatment. IOC provides a mechanism to stop our loved ones' demise earlier than we have available today.
Please support this bill and give this resource to caregivers of a mentally ill person who desperately needs to help their loved one.
Sincerely,
Clifford Calderwood, Falmouth, MASupport for Parents/Caregivers: Schizophrenia Spectrum
Ann Corcoran, Swampscott,MA
Laura Craciun, Truro, MA
Ashoke and Vinita Rampuria, Acton, MA
Tanya Trevett, Newton, MA
Ellen Sullivan, LICSW
Lynn Nanos, LICSW, Shrewsbury, MA
Elizabeth Walker, Westwood, Ma
Rachael Tuleja, Westwood, MA
Diane Greeley, Waltham, MA
